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Category: Disability

  • Parliament sees protests and petitions over outrageous energy company profiteering

    Campaign group Fuel Poverty Action took to parliament on 1 October. It was to hand in its #EnergyForAll petition signed by over half a million people. This calls for the guaranteed right to free energy to cover universal basic needs. Notably, the group coincided the hand-in with the day so-called energy regulator Ofgem was increasing the energy price cap, sending bills spiralling ahead of winter.

    It marks the start of a winter of rising and unaffordable bills for millions of UK households.

    ‘Energy For All’: bills rising with the energy price cap

    Ofgem has now implemented a higher energy price cap of:

    £1,717 per year for a typical household who use electricity and gas and pay by Direct Debit. This is an increase of 10% compared to the cap set between 1 July to 30 September 2024 (£1,568).

    This is lower than the same period last year – but means energy bills will rise on average by 10% – or £149 a year.

    It also means energy bills will still be well above pre-pandemic prices. The 10% increase makes them them 65% higher than in 2020.

    Campaigners are therefore warning that rising prices will cause many to switch off their heating and risk serious health problems this winter.

    Jonathan Bean of Fuel Poverty Action said that:

    this is extra money people can ill afford – especially the millions of low-income pensioners who will be plunged into fuel poverty as a result of Rachel Reeves axing winter fuel payments for two million pensioners who are already struggling.

    A huge number of people will resort to turning off the heating and trying to survive in cold, damp homes. Many will end up in hospital, and thousands will die.

    Of course, as the Canary has already highlighted, the energy price cap increase will hit marginalised households the hardest. In particular, the bill hike will hurt people who need a lot of energy, because the 10% rise only applies to the average household.

    What really matters is how much the unit price – the amount per kilowatt hour of energy – the cost is going up by. In reality then, for some, bills will shoot up a lot more than this.

    For instance, this will include chronically ill and disabled people who typically have greater energy needs for aids and equipment to help manage their conditions. Alongside this, people in less energy efficient housing will invariably pay more for their fuel costs as well. Naturally, many pensioners will also be among those with larger energy demands too.

    Fuel Poverty Action take the petition to Parliament

    It’s why Fuel Poverty Action launched its #EnergyForAll campaign. This demands that the government introduce a universal basic energy allowance called Energy For All. Specifically, as the petition itself stated:

    #EnergyForAll means guaranteeing everyone enough energy, free – to cover the basics like heating, cooking, and lighting – to give us all the security we need, taking account of people’s actual needs related to their age, health, and housing.

    To pay for this new pricing system, Energy for All, we’re urging the Government to introduce proper taxation on the profits of oil and gas producers, traders and suppliers, and to STOP subsidising fossil fuels with millions of pounds every day.

    The group delivered these calls from over 662,000 people to parliament on Tuesday 1 October, with banners and placards:

    Group of campaigners with banners that read: 662,000 demand Energy For All. And: Fuel Poverty Action.

    They took their message right to the prime minister’s front door:

    Group of campaigners preparing to knock the front door at Number 10 Downing Street.

    A campaigner preparing to knock the front door at Number 10 Downing Street, with a box carrying the petition reading: 662,506 demand Energy For All - the right to energy for heating, cooking, and light. Energy price cap

    Campaigners gather together with their petition outside Number 10 Downing Street.

    They also handed out information postcards to passers-by to keep building the momentum for these demands:

    Campaigner hands out and information postcard to a member of the public.

    Meanwhile, over by parliament Unite Community and Unite London and East were also taking action. The group did banner drops to highlight rising energy costs:

    Tax the rich companies profiteering off the energy price cap

    Several groups campaigning for protections for pensioners this winter are also supporting the campaign.

    General Secretary of the National Pensioners Convention Jan Shortt said:

    Energy For All would mean that older people would have a level of energy for warmth, light, hot water and cooking without worrying about falling into debt.

    Alongside this, Shortt highlighted that it could pay for this by properly taxing the profiteering fossil fuel companies and suppliers:

    The petition calls for “proper taxation on the profits of oil and gas producers, traders and suppliers” and an end to “fossil fuel subsidies” of “millions of pounds every day.

    Because, as the Canary’s James Wright has pointed out:

    At the same time as the price hike, energy companies Iberdrola (owners of Scottish Power), Equinor, Centrica (British Gas), EDF and Drax alone have made £240bn in profit since 2020.

    Despite this, as Wright also highlighted, Ofgem’s CEO has made out that the energy price cap hike is enabling these greedy companies to make a “small profit”. Instead, campaigners have argued the reality is that they are make eye-watering sums from the privatised energy racket.

    Tommy Vickerstaff at 350.org therefore argued that:

    Our energy system is broken and the government is dithering on fixing it. It’s currently focussed on lining the pockets of fossil fuel CEOs, but the solutions are clear.

    We need an immediate extreme wealth tax to unlock millions of pounds for a renewable energy system to ensure everyone in the UK is guaranteed clean, reliable energy in our homes. In doing so we can both provide security and safety for UK households as well as advancing our international climate goals by minimising the impact the UK energy system has on communities around the world and on our planet.

    An energy guarantee to keep people warm and safe this winter

    As Green New Deal Rising’s head of campaigns Mel Kee expressed, their rampant profiteering off the back of the energy price cap will be at the public’s expense:

    Our energy system must be run for the good of our communities, rather than to line the pockets of shareholders. Being able to heat our homes, or cook our meals should not be a luxury – these are basic needs.

    This Government must show us they are serious about ‘change’ by improving ordinary people’s lives, not protecting energy giants’ profits.

    In particular, campaigners honed in on the staggering profits of British Gas, which made over £750m in 2023 alone. They argued that Ofgem has “no excuse” for inaction to protect billpayers.

    Fuel Poverty Action’s Jonathan Bean said of this:

    Ofgem gave British Gas an extra £500 million in profits last year. So where is the action from the regulator to protect the most vulnerable?” asks Jonathan Bean of Fuel Poverty Action.

    Given this, he also argued for the abolishment of cruel standing charges. These are the flat-rate daily charge suppliers levy on energy bills – regardless of energy usage. He said that:

    One thing they can do right now is to abolish cruel standing charges, which see people up and down the country pay a charge just for the privilege of purchasing energy.

    Imagine being asked for £6 each time just to enter the supermarket to do your weekly shop. Standing charges are inhumane.

    The winter fuel payment was used by many pensioners to offset the high standing charges they face. With this protection gone, standing charges may force many more to turn off their heating, and millions on prepayment meters risk being cut off completely.

    Fuel Poverty Action has also highlighted that Ofgem electricity prices are four times higher than gas prices. This exposes the 8% of households with only electric heating to higher bills, including older people with only storage heating and families in low-quality private rented homes.

    Given this, the group is calling for removal of unfair government levies, and market reform so households benefit from cheap renewables. Therefore, Bean said:

    The terrible human suffering and devastating impact on our NHS we will see this winter results from misguided government policy and energy firm profiteering”, says Bean.

    We should instead be protecting everyone with an essential energy guarantee that keeps us all warm and safe this winter.

    Featured and in-text images via Angela Christofilou

    By Hannah Sharland

    This post was originally published on Canary.

  • It’s Dysautonomia Awareness Month – but we need to talk about EDS and ME/CFS

    Every October, it’s Dysautonomia Awareness Month: shedding light on a group of conditions that involve dysfunction of the autonomic nervous system (ANS). One of the most discussed conditions under the dysautonomia umbrella is Postural Orthostatic Tachycardia Syndrome (POTS), a disorder that significantly impacts patients’ quality of life, often leaving them with debilitating fatigue, dizziness, and difficulty standing upright. POTS supposedly can exist on its own, but it is frequently linked to other conditions – notably the Ehlers-Danlos syndromes (EDS) and myalgic encephalomyelitis (ME/CFS), and consequently many long Covid patients.

    What is POTS?

    POTS is a type of dysautonomia characterised by an exaggerated increase in heart rate when transitioning from lying down to standing up. Normally, when someone stands, the body’s autonomic nervous system adjusts blood flow and heart rate to counteract the effects of gravity.

    In people with POTS, these mechanisms are dysfunctional, causing an abnormal increase in heart rate by at least 30 beats per minute (or to over 120 beats per minute) within the first 10 minutes of standing. This abnormal response can lead to symptoms such as lightheadedness, dizziness, fatigue, nausea and vomiting, palpitations, cognitive impairment, and sometimes even fainting (syncope) or seizures.

    The connection between POTS, Ehlers-Danlos syndromes, and ME/CFS

    POTS is often found in conjunction with other medical conditions, particularly Ehlers-Danlos syndromes (EDS) and myalgic encephalomyelitis (ME/CFS).

    EDS is a group of connective tissue disorders characterised by joint hypermobility, skin hyperelasticity, and tissue fragility. A significant proportion of people with EDS, particularly the hypermobile type (hEDS), also have POTS.

    ME/CFS is a debilitating disorder characterised by post-exertional malaise: a worsening of many if not all symptoms after physical, mental, or emotional exertion. Many patients with ME/CFS also suffer from orthostatic intolerance, and POTS is a common subtype of this intolerance.

    In severe or very severe ME/CFS, POTS can be extremely dangerous – yet in the UK, it is still poorly recognised and treated. While the latest National Institute for Clinical Excellence (NICE) guidelines on ME/CFS recognise orthostatic intolerance as a complication of the illness, conversely there are no NICE guidelines on POTS.

    This leads to the severest ME/CFS patients becoming even more dangerously ill, due to the effect POTS has on all their body systems – not least cardiopulmonary and gastrointestinal.

    What causes POTS?

    The exact cause of POTS is still not fully understood, but researchers have identified several potential contributing factors:

    1. Autoimmune dysfunction: recent studies suggest that POTS may have an autoimmune component. Many patients with POTS have been found to have autoantibodies that affect the autonomic nervous system, particularly those that target receptors responsible for regulating heart rate and blood vessel constriction. This has led to the theory that POTS could be an autoimmune disorder in some cases, which could explain its overlap with other autoimmune diseases.
    2. Hypovolemia (low blood volume): a significant number of POTS patients have been found to have low blood volume, particularly a reduced volume of plasma (the liquid portion of the blood). This hypovolemia makes it harder for the body to pump blood efficiently, especially when transitioning to an upright position, leading to the characteristic symptoms of POTS. The body tries to compensate for this by increasing the heart rate, but this compensatory mechanism often fails, resulting in dizziness and fatigue.
    3. Neuropathic factors: in some POTS patients, there is evidence of small fiber neuropathy—damage to the small nerve fibers that help regulate autonomic functions like heart rate and blood pressure. This neuropathy can impair the body’s ability to properly constrict blood vessels, especially in the lower limbs, causing blood to pool in the legs when standing, which can contribute to orthostatic intolerance.
    4. Genetic predisposition: there is increasing evidence that genetics may play a role in POTS, especially in individuals who have both POTS and EDS. The connective tissue abnormalities seen in EDS may be inherited, and some genetic mutations that affect collagen and other components of connective tissue could also affect the function of blood vessels and the autonomic nervous system.

    The EDS and ME/CFS link

    However, in EDS and ME/CFS there may be another potential underlying cause: the vagus nerve.

    The vagus nerve, also known as cranial nerve X, extends from the brainstem through the neck, chest, and abdomen, innervating multiple organs along its path. It plays a major role in the parasympathetic nervous system. This is responsible for the body’s “rest and digest” functions. This system works to counterbalance the sympathetic nervous system, which governs the body’s “fight or flight” responses. The vagus nerve helps to slow the heart rate, regulate blood pressure, control digestion, and manage immune responses.

    Given its extensive influence over these critical functions, any damage or compression to the vagus nerve can have widespread consequences. This includes the potential development of autonomic disorders like POTS.

    One of the hallmark symptoms of POTS is an abnormally high heart rate when transitioning from a seated or lying position to standing. This tachycardia is believed to result from a failure of the autonomic nervous system to properly regulate heart function. Normally, when a person stands, the body adjusts by slightly increasing heart rate and constricting blood vessels to maintain blood pressure and adequate blood flow to the brain. The vagus nerve plays a key role in this process by slowing the heart rate when necessary and preventing it from overcompensating.

    If the vagus nerve is damaged or compressed, its ability to regulate heart rate becomes impaired. This can lead to an exaggerated heart rate response upon standing, a defining feature of POTS. The damage may also affect blood vessel constriction. This leads to poor circulation and blood pooling in the lower extremities. In turn, this can further exacerbate dizziness, fainting, and fatigue.

    Causes of vagus nerve dysfunction

    Vagus nerve dysfunction can result from a variety of causes, including trauma, surgery, infection, or chronic inflammation. In some cases, physical compression of the nerve by structures such as tumors, cysts, or even muscle spasms can impair its function. Additionally, autoimmune conditions like lupus or Guillain-Barré syndrome, which cause widespread nerve damage, can also affect the vagus nerve.

    Chronic inflammation or injury to the vagus nerve can disrupt its ability to send signals properly, leading to an imbalance in the autonomic nervous system. This imbalance can manifest as POTS symptoms, as the body struggles to regulate heart rate, blood pressure, and other key functions that are typically controlled by the vagus nerve.

    However, crucially in EDS one of the main causes of vagus nerve dysfunction may be craniocervical and atlantoaxial instabilities (CCI and AAI). These conditions are where the joints in the cervical junction move in ways they wouldn’t in someone not living with EDS. It means that often, blood flow to the head is restricted, and nerves in the neck are compressed or even damaged.

    In the worst cases, any injury to a person’s neck or head can cause cerebral spinal fluid leaks from either the neck or head areas. Crucially, CCI and AAI can be so severe that a person’s brain and skull begin to sink onto their cervical junction – which can be life-threatening.

    So, given people with EDS may also live with CCI and AAI, it is likely that compression or damage to the vagus nerve could cause POTS in these patients. Moreover, a large portion on people living with ME/CFS also live with EDS and/or CCI and AAI. Ergo, the same applies.

    How is POTS treated?

    Currently, there is no cure for POTS, but various treatments can help manage symptoms and improve quality of life. Treatment is usually multifaceted and tailored to the individual, focusing on lifestyle changes, medications, and sometimes physical therapy.

    1. Lifestyle modifications:
      • Increasing salt and fluid intake: many POTS patients benefit from increasing their salt intake. This helps to retain more water in the body, increasing blood volume. Drinking plenty of fluids, particularly electrolyte-rich beverages, is also essential.
      • Compression garments: wearing compression stockings or abdominal binders can help reduce blood pooling in the legs and abdomen. This makes it easier for the body to maintain blood pressure when standing.
    2. Medications:
      • Beta-blockers: these can help reduce heart rate and are often prescribed for POTS patients with excessive tachycardia.
      • Fludrocortisone: this medication helps the body retain sodium and water, increasing blood volume.
      • Midodrine: midodrine is a vasoconstrictor that can help increase blood pressure and reduce the pooling of blood in the lower extremities.
      • Ivabradine: ivabradine specifically reduces heart rate and has been shown to be effective in some POTS patients.

    Dysautonomia Awareness Month: not just about POTS

    Dysautonomia Awareness Month provides an opportunity to highlight the complexities of conditions like POTS, which often remain under-recognised and misunderstood. For patients with EDS and ME/CFS, POTS can significantly impact daily life.

    Sadly, research into the causes of POTS, including its potential autoimmune, genetic, and neuropathic origins, is still limited – and the recognition of it in EDS and ME/CFS still poor. Moreover, organisations like the NHS do not even recognised CCI and AAI as conditions.

    So, for now, more research is still needed – especially into CCI, AAI, and the role the vagus nerve plays in POTS. These may well be the medical holy grail for EDS and ME/CFS patients.

    Featured image via the Canary

    By Steve Topple

    This post was originally published on Canary.

  • The 10% energy price cap increase will hit poor and disabled people the hardest

    Winter energy bills are about to bite for households across the country. This is because on 1 October so-called energy regulator Ofgem will be raising the energy price cap. Obviously, this is just the tip of the iceberg when it comes to households struggling to survive this winter. It comes alongside the Labour Party’s cut to winter fuel payments, as well as the cruel standing charges the regulator has so far refused to scrap despite clear public appetite for this.

    Tomorrow, Ofgem’s price cap change is kicking off a winter of fuel poverty for millions of UK households.

    Energy price cap about to rise for winter

    As the Canary has previously reported, Ofgem will be increasing the energy price cap.

    Specifically, it will implement a higher price cap of:

    £1,717 per year for a typical household who use electricity and gas and pay by Direct Debit. This is an increase of 10% compared to the cap set between 1 July to 30 September 2024 (£1,568).

    This is lower than the same period last year – but means energy bills will rise on average by 10% – or £149 a year.

    As the End Fuel Poverty Coalition has pointed out, it also means energy bills will still be well above pre-pandemic prices.

    Unsurprisingly, this will hit the most vulnerable households hardest. Notably, the £1,717 energy price cap is just the amount an average household’s bills will rise. It means in reality, bills will actually increase by a lot more than this. In particular, this applies to those whose typical energy bill sits above this average. Because what really matters is how much the unit price – the price per kilowatt hour of energy – the cost is going up by.

    Of course, this includes chronically ill and disabled people who typically have greater energy needs for aids and equipment to help manage their conditions. Alongside this, people in less energy efficient housing will invariably pay more for their fuel costs as well. Naturally, many pensioners will also be among those with larger energy demands too.

    Unsurprisingly then, the energy price cap rise alone will plunge hundreds of thousands more households into fuel poverty this winter. Specifically, nonprofit National Energy Action (NEA) has calculated that this will be 400,000 more UK households. It estimated that this means that at least six million households will be trapped in fuel poverty this winter.

    Winter fuel payment cut and standing charges

    Naturally, NEA put this out as the new Labour government also announced its plan to strip the majority of pensioners of winter fuel payments – on top of the increasing energy price cap.

    As a result, fuel poor pensioners are losing out twice. First, the government has stripped them of up to £600 in winter fuel allowance. Now, their energy bills will shoot up again from 1 October – all while they now have less income for it.

    In addition to this, the government’s own figures have shown how it’s disproportionately marginalised households that are set to lose the winter fuel payment. In particular, this will be:

    Moreover, if all this weren’t enough, cruel standing charges will make winter inordinately worse for pensioners and people Ofgem’s energy price cap is forcing into fuel poverty this winter. This is the flat-rate daily cost energy suppliers charge people – even when they’re not using any energy.

    The energy price cap rise means this is also going up too – and means it will be over £330 a year on average. Again, the standing charge can also be much higher for some households. This is because it can vary based on supplier, the area you live, and the type of tariff you’re on.

    Ofgem failing households in poverty

    Obviously, this means the energy price cap could in fact hit some households twice. Firstly, for the unit price. Then, the increased inflated standing charge adds an extra layer to this. This is particularly the case for those in certain areas, or on prepayment meters for instance.

    Most significantly though, the point is that the standing charge makes up a disproportionate amount of low energy users’ bills.

    Naturally, these typically tend to be poorer households who can’t afford to use as much in the first place. In other words, it’s likely to be many among the 1.6 million pensioners living in poverty – as well as the 6 million households in fuel poverty as well.

    Yet, despite this, Ofgem has so far refused to put forward scrapping the standing charge as a solution.

    Energy price cap: rationing power to get by

    Now, a new survey has revealed the devastating impacts of all this even further. As the Guardian reported:

    Almost half of British adults will ration their energy use this winter, a survey has found, as energy bills will rise again by 10% this week.

    In particular, it highlighted that:

    According to the YouGov survey on behalf of the fuel poverty charity National Energy Action, 46% of adults are likely to use less energy than they need to maintain comfort and wellbeing.

    Forty-five per cent of those on low incomes said they had already found it difficult to pay for their energy in the last year, while more than a third of those on prepayment meters said they had gone without power or heating when they needed it.

    So, what energy bill rises, the winter fuel payment cut, and cruel standing charges mean, is that vast numbers of households will go without energy when they need it this winter.

    As ever, it’s poor and disabled people that the government and supposed regulators’ decisions will hurt most. However, it’s little wonder when the career politicians at Westminster are as far removed from these realities as their hedge fund donor, MP heating expenses, and freebie-gilded lives can get.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • It is now clear Iain Duncan Smith is influencing Labour’s DWP policies. Here’s why.

    To little notice on social media, Iain Duncan Smith’s notorious dark money think tank the Centre for Social Justice (CSJ) posted up at the Labour Party conference. On Sunday 22 September, it hosted an official fringe event around DWP-related issues.

    Unsurprisingly, this was as the Canary already anticipated – specifically, the CSJ plugging its latest reports to the new Labour government. And it appeared to be exactly what we predicted too. That is, a lobbying affair for laying into chronically ill and disabled people claiming benefits.

    Worst of all, as the CSJ cosied up to Labour, who was flogging its very same reports in the rightwing corporate media? None other than Iain Duncan Smith himself of course.

    Iain Duncan Smith’s think tank schmoozing with Labour

    The CSJ’s fringe event in question was disingenuously titled:

    How Can We Re-Unite Britain?

    Its CEO Andy Cook chaired the session, with speakers including Department for Work and Pensions (DWP) minister Stephen Timms and Labour mayor of Greater Manchester Andy Burnham:

    The Progressive Policy Institute’s Claire Ainsley, as well as Times journalist Rachel Sylvester also sat on the panel:

    In other words, it was the CSJ’s usual circus of centre-right schemes on show:

    Notably, as the Canary pointed out ahead of the fringe event, the CSJ and its panellists were promoting the think tanks latest reports.

    The main report offers 50 recommendations for the new Labour government. These cover policy ideas in multiple areas across work, housing, crime, education, and family. Predictably, it put tackling so-called “health related economic inactivity” as one of the priorities under its work umbrella.

    The second report pushed a work programme model – which the Canary has found highly contentious – not least due to the likely harm it could do to chronically ill and disabled people.

    Bogus DWP fit for work figures

    What’s more, like clockwork, as the CSJ was schmoozing with Labour at conference one of the think tanks right-wing press lapdogs was laundering its DWP reports to the public.

    Enter CSJ corporate media mouthpiece the Telegraph. The very same day, it put out an article harping on about long-term sickness and unemployment. Its headline proclaimed:

    Up to one million people wrongly classed as too sick to work

    In the article, the outlet unveiled the supposed “hidden unemployment” figure. This, it suggested is:

    at least 800,000 people who are out of work but want to get a job

    Specifically, it argued that these were:

    missing from the headline unemployment rate in 2022

    However, its basis for this is entirely bogus. Where, pray tell, did its hit piece on chronically ill and disabled benefit claimants come from? You guessed it – the CSJ reports, naturally.

    Previously, the Canary pulled apart more CSJ-fed corporate media spin with this figure – unsurprisingly, in both the Times and the Telegraph. As we noted then, this used wildly extrapolating assumptions, from a flawed survey of just 2,012 benefit claimants. You can read more about its blatantly erroneous calculations here.

    However, in this instance, the Telegraph and CSJ have leaned into another study to back up its bullshit claims. Here again, both the study itself, and the CSJ’s interpretation of it, are enormously problematic.

    More flawed assumptions from the CSJ

    Specifically, it concerns a 2022 analysis from the Centre for Regional Economic and Social Research at Sheffield Hallam University. This purports to calculate the “real level of unemployment” in the UK for 2022.

    In particular, it estimated that:

    there are some 790,000 ‘hidden unemployed’ on incapacity benefits. These are men and women who might have been expected to be in work in a genuinely fully employed economy.

    Obviously, for one, this is a far cry from the CSJ and Telegraph’s supposed “800,000 people who are out of work but want to get a job”. Moreover, these people are not, as they also claim, missing from headline employment figures at all. The Office for National Statistics (ONS) has simply included these amongst those off work owing to long-term sickness.

    Clearly, the CSJ has an agenda here. It wants to shunt this group of people into the workforce. To do this, it’s suggesting the ONS has wrongly categorised them. This is patently false, for a whole host of reasons.

    For one, the ONS classes them among its “economically inactive” category – specifically sub-divided off as owing to long-term sickness. This simply means people out of work, who aren’t actively looking for it, because they have health conditions or disabilities impacting them. The CSJ’s notion is that if the ONS could recategorise some of these as “unemployed” – then the government can coerce them into work.

    Most alarmingly of all however, the study uses standardised mortality rates (SMRs) as a measure for calculating the number of long-term sick people who are unable to work. Essentially, any number of people on ill health-related benefits above the SMR for each area of the UK, it considers the so-called “hidden unemployed”. These are people claiming these DWP benefits it suggests would be capable of employment.

    What this means is that it only classifies those with life-limiting illnesses as too sick to work.

    Of course, this is clearly a ludicrous assumption in itself. There will be many chronically ill and disabled people living with conditions considered non-life threatening who won’t be able to work.

    Nonetheless, the CSJ is pushing this botched analysis anyway. In short then, unless you’re on deaths door, the CSJ is saying you can and should be in employment.

    Iain Duncan Smith rears his DWP ‘grim reaper’ head again

    Crucially, it’s apparent what will result from this series of flawed, yet dangerous claims from the CSJ.

    Cue, a certain DWP “grim reaper” and CSJ founder to double-down with his disgusting ableist rhetoric. The article quoted Duncan-Smith in response to the reports. It said that:

    Former Tory leader Sir Iain Duncan Smith said the Government must do more to get people back into work.

    He said: “Too many people on sickness benefits are written off”, he said, adding that the current benefits system did not have the right incentives for people to even start looking.

    The former work and pensions secretary added: “Just let them go to work, for God’s sake. Help them get into work, get better pay, and then they will come off benefits naturally.”

    The implication of the CSJ’s “hidden unemployed” propaganda is precisely this. It’s a pretext for another wave of IDS style repressive benefit reforms squarely aimed at chronically ill and disabled people.

    Where he says “the right incentives” – he means more punitive sanctions. When he bleats on about getting people into work so they “come off benefits naturally”, he’s playing into the constant drip of right-wing rags and politicians trivialising chronic illness and mental health conditions.

    What’s more, the Telegraph revealed his and the CSJ’s hand. It wrote that:

    The think tank is urging the Government to continue to invest in programmes such as Universal Support, which offers tailored help for the long term sick and disabled.

    Again, it was exactly as the Canary said – pushing for the right-wing’s repackaged work programmes. Of course, as we delved into, there’s hardly anything progressive about these schemes, and they’re likely to ramp up the harm to chronically ill and disabled people.

    Starmer’s IDS DWP tribute act

    There’s now little doubt the new Labour government is in the thrall of Iain Duncan Smith’s wildly oxymoronically-titled DWP trojan horse-tank.

    It was painfully evident in both the lead up to, and during Starmer’s keynote speech at conference. There was the usual crackdown crock of shit on benefit fraud – with hints of Labour resurrecting one of the most oppressive ideas in recent Tory benefit claimant-bashing times. In particular, this was its mass surveillance plans for the bank accounts of social security claimants.

    More than this however was as the conflation of DWP benefit fraud with people who can’t work from long-term sickness, as the Canary’s Rachel Charlton-Dailey pointed out. You can bet it’s the CSJ’s bogus 800,000 to a million long-term sick he was talking about here.

    There was also no coincidence the CSJ, and one of its key corporate media mouthpieces was banging on about  “economically inactive” people days before the prime minister slipped that very concept into his speech. Again, the excellent Charlton-Dailey completely eviscerated this too, writing how it is:

    the most bullshit phrase for those not working as it’s not as if we stop paying bills when we’re on benefits.

    Then, before the dust could settle after his speech, the prime minister went near full-on IDS on this to the BBC’s Today programme. He opined that the:

    basic proposition that you should look for work is right

    People need to look for work, but they also need support.

    That’s why I’ve gone out to look at schemes where businesses are supporting people back into work from long-term sickness.

    Needless to say, the insidious ideology of Iain Duncan Smith is now front and centre of this “changed” Labour government. The CSJ spouting its agenda at the party’s conference plainly demonstrated this.

    What it all means for chronically ill and disabled people is only too obvious. It’s continuity callous Tory Labour picking up where the last cruel and viciously ableist government left off.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • Starmer’s Labour Party is now just as dangerous for disabled people as the Tories were

    “We are rebuilding a Britain that belongs to you”.

    Those were the words tweeted by Keir Starmer hours before his first Labour conference speech as prime minister. Though after hearing the speech it’s clear he left a few words off the end:

    “…unless you’re disabled”.

    Starmer: coming after vulnerable people

    Disabled people have long feared that a Labour government would treat them no better than a Tory one. And so far, Starmer’s team have done nothing to prove otherwise.

    It may have only been 12 weeks since the election and just three weeks since the end of summer recess, but in that time their intentions have been made clear.

    They could’ve shown us they cared about disabled people straight out of the bat – but instead, they allowed the PIP and Universal Credit consultations to carry on, and Liz Kendall has said she’ll be reviewing them. We’ve also had endless rhetoric from her and Reeves about “economic inactivity” – the most bullshit phrase for those not working as it’s not as if we stop paying bills when we’re on benefits.

    In the last few weeks, we’ve also seen the number of articles on “workshy” Britain amped up, which is exactly what the government usually does before cutting our benefits.

    It was also revealed by my brilliant colleague Hannah Sharland that Iain Duncan Smith’s grubby little think tank has already gotten itself into bed with Labour’s DWP.

    Much of the first few weeks of Keir’s cruel rule has been focused on him freezing pensioners. Whilst the winter fuel payments cuts are bad enough, the fact that 71% of disabled pensioners will lose it is even worse. And it’s no coincidence that the DWP snuck that little nugget out late on a Friday evening.

    On top of the winter fuel payments cut we’ve also seen a new task force formed to get Britain back to work that doesn’t include a single disabled person, because, for all their talk of wanting to get those of sickness benefits back into work, they’re not actually doing anything to really support us.

    Cutting benefits once again

    In the run-up to Starmer’s speech, we had reports that Rachel Reeves is looking to cut “sickness” benefits in order to help get people back into work.

    Because starving to death is obviously an incentive.

    Kendall also told a fringe event that the government were preparing for big benefits and Jobcentre reforms that would coincide with the budget.

    As if we weren’t all anxious enough.

    Just before his speech, several outlets reported that Starmer would outline plans to continue the crackdown on “benefit fraud” that the Tories started

    A reminder disability benefit fraud is 0%.

    This includes plans to bring in legislation that will give DWP benefit inspectors the power to snoop into benefit claimants’ bank accounts. This sounds awfully like Tory plans from 2023 that were scrapped in the last administration’s wash-up period.

    This is also horrifically hypocritical, because Labour fought the Tories against this bill last year, with the now-minister for disabled people Stephen Timms saying at the time:

    I think it’s surprising that the Conservative Party is bringing forward such a major expansion of state powers to pry into the affairs of private citizens.

    Dark sentiment lurks under Starmer and the smarminess

    So what did Starmer actually say in his speech? Well under the smarminess and cliche on top of cliche were a lot of big promises that are going to cost a lot. Then finally came the time for a measly mention of benefits:

    If we want to maintain support for the welfare state, then we will legislate to stop benefit fraud. Do everything we can to tackle worklessness.

    This should’ve set alarm bells ringing for many, but he threw it in amongst a promise-heavy paragraph next to something about pylons hoping people wouldn’t notice. If only you hadn’t given it to the press – making benefits a big focus hours before – eh Keir?

    He went on to say:

    We will get the welfare bill down because we will tackle long-term sickness and get people back to work. We will make every penny work for you because we will root out waste and go after tax avoiders. There will be no stone left unturned.

    The implications of course of using this bullshit phrase “worklessness” alongside benefit fraud is that it’s people who are out of work.

    By bringing up specifically those who can’t work because of long-term sickness, Starmer is hoping 2+2 will equal 5 for the British public and they’ll think those are the ones wasting their hard-earned taxes.

    The use of words such as “no stone unturned” perpetuates the lies that many slip through the net because disability benefits are so easy to claim – despite many being hounded by awful assessments and of course the dehumanising work capability assessments.

    And if they want to talk about tackling DWP waste they could start with the millions spent trying to deny disabled people the right to benefits a year or all the money wasted in their own error.

    Failing to support disabled people

    What’s a coincidence, I’m sure, is that whilst he mentioned tax avoiders in the welfare section, he didn’t mention how much is unpaid in tax a year by the wealthiest.

    There were also lots of instances in his speech that he could’ve used to show his support for disabled people and just didn’t – even when he mentioned his brother, who he said “had difficulties learning”.

    This would’ve been a great place to talk about SEND. His mother who needed care when she got sick would’ve been an opportunity to pledge to support those who need care or indeed carers.

    The most noticeable thing we were missing, hurt the most for me.

    When Starmer pledged that they would bring in a “Hillsborough Law” meaning all public officials have a duty of candour, he mentioned many cases where this would apply and victims and their families would get justice – Grenfell, the postmasters, and the infected blood scandal.

    However, he didn’t mention the Covid inquiry, in which six in 10 deaths were disabled people.

    He also didn’t mention disabled benefit deaths, of which an inquiry is due to start soon. But this comes as no surprise when disabled activists had to stage a sit-in just three weeks ago to get parliament to accept copies of John Pring’s The Department which exposes how the DWP is responsible for so many dead disabled people.

    What he did do, however, was continuously mention working people and how much this was a government for them, making it clear that labour is not for those who can’t work. He focused heavily on the sacrifices working-class people would have to make – whilst subtly making those on benefits sound like a burden:

    I have to warn you, working people do want more decisive government. They do want us to rebuild our public services. But their pockets are not deep — not at all. So we have to be a great reforming government.

    Starmer: no ‘change’, just the same old shit

    It’s really terrifying that the man accused of taking hundreds of thousands of pounds of freebies can so readily make it seem like the most vulnerable in society are scroungers.

    At the end of the day, despite successive governments trying to paint us all as workshy layabouts who sponge off taxpayers, disabled benefits claimants are some of the poorest people in society who struggle to eat and pay their bills on the paltry amount of benefits they receive.

    Labour are just Tories in a different colour in many ways, but the most obvious is the way they’re trying to paint disabled people and other minorities as the enemy so that the public won’t look at them.

    They might’ve campaigned as the party of change, but it’s just the same old shit – now in red.

    Featured image via the Canary

    By Rachel Charlton-Dailey

    This post was originally published on Canary.

  • DWP just ADMITTED it’s cutting winter fuel payments from 1.6 million people in poverty

    The new Labour Party government is stripping winter fuel payments from 1.6 million pensioners living in poverty this winter. This is according to a Department for Work and Pensions (DWP) minister – showing that Labour knew this – but are ploughing ahead anyway.

    Winter fuel payments cut: hitting the poorest households

    Previously, charity Age UK revealed that Labour’s callous winter fuel payments cut would deny 1.6 million pensioners in poverty the vital benefit this winter.

    As the Canary has already pointed out, this will be right as energy bills increase. This is because regulator Ofgem is raising the energy price cap from 1 October.

    Now, the DWP’s own figures corroborate this estimate exactly – showing that the Labour government knew this all along.

    Specifically, the DWP detailed that:

    • 1.6 million pensioners living in relative poverty after housing costs – 84% – were not claiming Pension Credits.
    • 1.2 million pensioners living in absolute poverty after housing costs – 85% – were not claiming them.

    DWP minister Emma Reynolds disclosed the information in response to two written questions from MPs. The first was from Labour MP for Lowestoft Jess Asato. She tabled the question on 30 August. Of course, this was a little under two weeks before she voted with the government to strip pensioners of it.

    The second was from former DWP boss Mel Stride. Obviously, this was ironic, given that during his time overseeing the department, he’d also put forward a sweep of similarly regressive reform proposals. Nonetheless, Stride submitted his question a few days after Asato, at the start of September.

    As Reynolds explained in her response to the winter fuel payments cut question:

    A household is in relative poverty if its income is less than 60 per cent of the median household income in a given financial year. ​A household is in absolute poverty if its income is less than 60% of median household income in 2010/11, uprated by inflation.​

    However, Age UK’s estimates already showed it’s worse than this. Its calculations went further than the DWP’s. Crucially, it identified a further 900,000 older people living no more than £55 a week above the relative poverty line who would also lose the benefit.

    Pension Credit uptake falling far short

    Of course, despite the fact that by the DWP’s own reckoning, this group of 2.8 million pensioners are living in poverty, many still won’t be eligible for Pension Credits. By its own estimates again, it calculated that 880,000 households with pensioners could claim this, but currently aren’t.

    Largely, this is because either they are unaware they’re eligible, or due to the complexity of applying for it – given the application form has over 240 questions.

    And so far, the government’s drive to increase uptake in Pension Credits has barely made a dent on this. Reynolds boasted in another response that its Pension Credit campaign had caused a 115% surge in applications. Specifically, this was in the five weeks after it launched this, compared to the five weeks prior to it.

    However, this equated to just 38,500 new claims. This is around 4% of the 880,000 it said are eligible in the wake of the winter fuel payments cut, but not yet claiming it. In other words, well over 800,000 households who should get Pension Credits – and by extension, the winter fuel payments – won’t now receive it this winter.

    That’s also before taking into account the process times for new claims. Notably, the DWP has been telling people it could take up to nine weeks to even process these new applications.

    Yet, the DWP newly confirmed figures now show the winter fuel payments cut will actually hit many more pensioners not able to claim Pension Credits, but also living in poverty.

    1.6 million: a reoccurring figure

    Naturally, this is just the tip of the iceberg. The DWP’s Friday night publication of the department’s winter fuel payments cut Equality Analysis also exposed the disproportionate impact of the cut on other marginalised groups.

    Not only is Labour slashing the payment to 1.6 million pensioners in poverty, but the same number of disabled people will also lose out. This was 71% of disabled pensioners entitled to the benefit. As well as this, the analysis revealed that the cut would hit women more than men. Approximately 5.2 million women will lose the winter fuel payments, to 4.8 million men this winter.

    Of course, multiple pensioner and disability rights charities have been highlighting the devastating toll since chancellor Rachel Reeves announced this. Now however, this is more proof that the Labour government will have been aware of all this beforehand.

    In other words, the new government has readily thrown poor and disabled pensioners under the bus. DWP minister Reynolds’ revelations about winter fuel payments should be damning. However, it’s unlikely to stop Starmer and co in their tracks. After all, it’s nothing they didn’t already know, and choose to deliberately ignore anyway.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • Tens of thousands of people call on Ofgem to scrap cruel standing charges

    Over 20,000 people have flooded energy regulator Ofgem’s inbox calling for it to scrap cruel standing charges on energy bills. As part of Energy For All’s letter-writing campaign, thousands have sent emails to demand it ditch the flat-rate daily charge that disproportionately impacts poorer households – on top of the cut to the winter fuel payments.

    20,000 call for Ofgem to ditch cruel standing charges

    With energy bills set to rise 10% on 1 October, Fuel Poverty Action, Green New Deal Rising, and the Peace and Justice Project have been urging the public to take action.

    The campaign is in response to Ofgem’s current consultation on standing charges, which closes on 20 September. As the regulator explained in this, standing charges are:

    set by your energy supplier and are also included in the energy price cap. Your supplier will charge you this cost each day, even if you do not use any energy on that day. The charge covers the cost to maintain the energy supply network, take meter readings, and support government social and environmental schemes.

    In January, Ofgem closed its first consultation on the standing charge. Over 30,000 members of the public responded to this, which the regulator itself acknowledged:

    demonstrated the strength of feeling among the public for change

    Crucially, prominent among these changes was for Ofgem to abolish the standing charge altogether. Instead, respondents said it should shift:

    these costs to energy suppliers to absorb using profits

    However, this is not what Ofgem has put forward in the new consultation. So, the Energy For All campaign is getting members of the public to call it out.

    Notably, 30,000 individuals engaged with the previous two-month consultation. This time, more than 20,000 people have directly added their name to the call to abolish the standing charges altogether- with many thousands joining the campaign in just the last week alone.

    Fuel Poverty Action’s Jonathan Bean said that:

    Ofgem proposing only minor tweaks in this latest consultation flies in the face of the clear verdict of the last consultation

    They’ve chosen to quietly consult again while winter fuel payments dominate the news. That’s why Fuel Poverty Action have teamed up with Green New Deal Rising and the Peace & Justice Project to make sure that this time Ofgem gets the message.

    The ‘cruelty of our current system’

    Due to Ofgem raising the energy price cap, these standing charges – set by suppliers – will also rise this winter. Crucially, it means the standing charge will be over £330 a year. Energy suppliers will charge this, even when people are not using any energy.

    Bean warned that this could push many into fuel poverty this winter. He argued that:

    the cruelty of our current system is that even those living in small flats using no energy at all are paying the same standing charge as high users living in mansions.

    The standing charge alone is enough to push many into fuel poverty, before they are allowed to buy any energy at all,’ says Bean.

    Energy is essential. We aren’t charged £7 at the supermarket door to be allowed in to do our weekly shop. This outrageous poll tax on energy hits the poorest hardest.

    Of course, this is also coming on top of Labour Party’s callous decision to cut the winter fuel payment to millions of pensioners.

    Given that many low-income pensioners are now set to lose out on the winter fuel payment, campaigners say standing charges will push many into ‘energy starvation’.

    Moreover, as the Canary previously highlighted, the winter fuel payment cut, alongside rising standing charges are a double-whammy for pensioners this winter. We wrote how the standing charges already make up a disproportionate amount of low energy users’ bills.

    General Secretary of the National Pensioner’s Convention Jan Shortt emphasised the impact this will have on elderly people:

    Standing charges have reached such a level that they now make up the bulk of household bills. For those older people who have cut down on their consumption due to the cost of energy, there is very little difference in savings.

    Therefore, Shortt argued that:

    The Regulator should get rid of them and work on a strategy to apply energy for all which is the fairest way to support those most in need.

    Echoing this, Bean also said that:

    Due to the energy price crisis, many older people resort to turning off their heating altogether, putting their health at risk.

    It’s especially brutal for single pensioners hit hard by both the £330 standing charge and losing their £300 winter fuel payment.

    Compounding the energy crisis for chronically ill and disabled people

    The Canary also underscored how the winter fuel payment, alongside soaring standing charges with rising energy bills will also disproportionately hit chronically ill and disabled people.

    Firstly, with the unit price going up, higher energy users will be hit. Obviously this includes:

    chronically ill and disabled people who typically have greater energy needs for aids and equipment to help manage their conditions.

    Then, the staggering standing charges will eat into disabled people’s – many of whom are on low-incomes to begin with – vital finances needed to look after their health.

    To make matters worse, the government’s equality analysis has intimated that 1.6 million disabled pensioners will now lose the winter fuel payment this winter.

    Naturally, each of these compound the impacts of the energy crisis for chronically ill and disabled people.

    It’s why members of Disabled People Against Cuts (DPAC) are also lending their support to the campaign. Rick Burgess from Manchester DPAC said:

    everyone paying a standing charge is subsidising failed companies in our failed privatised utility sector.

    Even before using a single unit of energy disabled people pay tens of pounds a month to cover over Ofgem’s shame. Money we actually need to avoid worsening health. Instead it is taken from us under threat by a failed utility system.

    Corbyn backs the standing charges campaign – and you can too

    However, Ofgem is only tinkering around at the edges of the problem – much like Labour has on the winter fuel payments.

    It’s consulting on ‘reform’ options to the standing charge.

    The regulator’s latest proposals include shifting some of the standing charge onto unit prices. However, campaigners say Ofgem is asking ‘all the wrong questions’.

    They have pointed to Ofgem’s decision last year to hand British Gas an extra £500m in profits. As a result, they argue that reducing standing charges should not mean higher bills.

    The campaign letter blasts Ofgem on this point, saying:

    it is plain wrong that your latest consultation suggests that savings on standing prices must mean increases in unit prices. You need to do your job to cut costs and profits, and work with Government to get rid of the levies and taxes that are a big chunk of the standing charges.

    Bean also summed this up, saying:

    We are paying for the bloated overheads and obscene profits of energy firms.

    But it doesn’t have to be this way. Ending standing charges is the first step towards implementing Energy For All, which has the backing of over 660,000 people.

    Ofgem and the government need to overhaul our broken energy system, so no one suffers energy starvation over winter.

    Politicians from multiple political parties have taken aim at standing charges. Labour has promised to reduce them, and both the Conservatives and Liberal Democrats have manifesto commitments to reform them.

    By contrast however, Independent Alliance MP Jeremy Corbyn has come out in support of the Energy For All’s demand to scrap them altogether. He said that:

    standing charges are intrinsically unfair as they charge everyone the same regardless of income or wealth.

    I first opposed standing charges when I entered Parliament in the 1980’s and still do now. It’s time for them to go and I’m proud that our Peace & Justice Project is supporting this campaign.

    There’s still time to join him and tens of thousands of others who’ve already spoken up against these cruel standing charges. Energy For All are sending the letters to Ofgem CEO Jonathan Brearley, Director General Tim Jarvis, and Energy Minister Miatta Fahnbulleh MP. Fuel Poverty Action will also highlight these in its official consultation response.  You can add your name and send an email as part of the campaign here.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • A doctor involved in PACE trial has influenced a DWP work programme targeting ME/CFS and long Covid

    A joint Department for Work and Pensions (DWP) and Department of Health and Social Care (DHSC) work programme – WorkWell – likely spells more bad news and harm to people living with myalgic encephalomyelitis (ME/CFS) and long Covid. Not least in this because someone involved in the notorious PACE trial had a hand in it.

    Moreover, the scheme is neck deep in a controversial model for disability that a vested lobby has long used to psychologise people with these devastating viral-onset conditions. Naturally, the DWP itself is wrapped up in this expansive medical scandal – and both previous Tory and Labour governments were involved.

    Now, a single contract has brought all this and more into sharp relief. It underscores how the new Labour government could continue with this catastrophic model through its back-to-work welfare reforms. Most significantly, it shows how Labour has ME and long Covid patients in it sights – but that it’s also nothing new – as it has long targeted them.

    DWP: farming out WorkWell again

    On Thursday 12 September, the government’s ‘Contracts Finder’ service published an award notice for a key component of an upcoming DWP and DHSC work programme.

    Specifically, the contract concerned the Tory-launched WorkWell pilot programme. You can read more about the programme and the red flags the Canary identified with it, here. In short though, it’s a repackaged work programme by any other name.

    Crucially, the Canary highlighted how the scheme could signal some significant problems for people living with ME/CFS and long Covid. Significantly, we wrote that:

    there’s one issue in particular that should send alarm bells ringing for people with ME and long Covid. This is the fact the review promotes a biopsychosocial model for treating people with the range of conditions it assessed.

    In a nutshell, the biopsychosocial model of disability both psychologises people’s chronic health conditions, and foists the onus for overcoming these on individuals. Essentially, it’s a con – but one which suits the DWP in its crusade to put sick and disabled people at the mercy of the capitalist economy.

    However, there was also actually more to this than first met the eye. Most notably, this is that it concealed a legacy of both Labour and Tory DWP co-option of this model. Now, this new WorkWell contract has helped to show how the new scheme and Labour’s broader back-to-work welfare reforms will operate in this context.

    A revealing WorkWell contract

    In this instance, the contract was for ‘WorkWell Work and Health Coach (WHC) Training’. As the notice itself explained:

    The requirement is for a training package to support the development the new WHC role covering three core elements:
    a) Identifying an individual’s work and health barriers
    b) Producing a return or thrive in work plan to support an individual to start and stay in work.
    c) Triage, signposting and referral onwards – covering the limits and remit of the WHC role and helping them to understand when it is important to refer an individual to more specialist expertise and ensuring they do not provide any advice that needs clinical expertise.

    This covers the WHC’s core duties, and the training will be essential to ensure that across the 15 areas there is consistency in the way that the core duties are delivered and this is done to high standard.

    In other words, the contract was for an organisation to run the training for WorkWell’s work and health coaches. As far as the Canary understands it, these would be the main point of contact that participants would meet with on the programme.

    So, who exactly will be doing this? The Vocational Rehabilitation Association (VRA). And straight away, there are some enormous red flags with this.

    Vocational Rehabilitation Association in bed with the DWP

    As the VRA website explains:

    Rehabilitation, in the health context, involves facilitating optimal participation for disadvantaged individuals in society. Furthermore vocational rehabilitation (VR) maximises participation in the workforce. Vocational rehabilitation practitioners (VRPs) are mostly health/rehabilitation professionals. However, they specialise in understanding the world of work. But a few other VRPs are employment experts with specialist knowledge of health and/or disability issues.

    In other words, these practitioners exist to make it so that chronically ill and disabled people are kept in, or pushed towards work. Notably, the VRA states that:

    The VRA represents all those involved in delivering VR services. Consequently a number of groups are involved from both health (NHS and private) and other government agencies e.g. the Department for Work and Pensions.

    Already then, it’s evident that the organisation acts in the interests of the DWP and government. However, it’s hardly surprising when their aims completely align. Significantly, the VRA describes its work supporting employers to “retain employees despite of ill health.” Here, the VRA really shows its hand, stating that:

    It also helps reduce sickness absence and aids the economy through reducing the costs of ill-health benefits.

    Ultimately, it suggests the VRA exists for a particular purpose. That is, aiding the state in denying chronically ill and disabled people benefits, and shunting them into the capitalist workforce.

    If this implication weren’t bad enough, its entanglement in the history of the psychologisation of ME/CFS positions it even more problematically. This is especially the case in the context of the WorkWell work and health coach training contract.

    A certain notorious psychologiser as patron

    Until recently, a notorious forefather of the biopsychosocial model stood as the VRA’s patron. This was Mansel Alyward – who acted in the role up until his death in May 2024.

    Alyward was chief medical adviser, medical director, and chief scientist for the DWP between 1995 and 2005. Of course, he therefore served in this role mostly during Tony Blair’s Labour government. Crucially, Alyward and orthopaedic surgeon Gordon Waddell were the architects of the biopsychosocial model of disability.

    And it was Alyward who set the ball rolling on Labour embedding this throughout the UK’s social security system. As the Disability News Service’s (DNS) John Pring wrote in 2016, he did this to devastating effect:

    The BPS [biopsychosocial model] under-pinned Labour’s out-of-work disability benefit employment and support allowance (ESA) and the work capability assessment (WCA), which has since been linked repeatedly to relapses, episodes of self-harm, and even suicides and other deaths, among those who have been assessed and found fit for work.

    BPS has also “played a key role” in the tightening of eligibility criteria for ESA and other disability benefits by the subsequent coalition and Tory governments, including the new personal independence payment and universal credit

    In addition to this, Waddell was also the co-author of the vocational rehabilitation review the DWP’s WorkWell prospectus has based its approach on.

    Alyward and the PACE Trial

    However, for people living with ME/CFS, the former DWP medical adviser had an especially nefarious role in what one parliamentarian previously branded one of:

    the biggest medical scandals of the 21st century

    Part of this was the DWP-part-funded PACE Trial – an infamously flawed study into treatment for people living with ME. You can find out more about this here. In short, it pushed graded exercise therapy (GET) and cognitive behavioural therapy (CBT) as the primary treatments for people living with the disease.

    However, the National Institute for Health and Care Excellence (NICE) removed GET from its guidelines in 2021, and downgraded CBT. This was because the former has proven actively harmful for ME patients. Meanwhile, healthcare professionals promoted the latter under the notion that patients could just practically think themselves better. For obvious reasons – namely that ME is a physiological illness – this too was hugely problematic, and embodied the prevalent psychologisation of the disease in the medical establishment’s psyche. Needless to say, this has also caused immense harm to people living with ME.

    So what was Alyward’s part in all this?

    As DWP chief medical adviser, he committed the department to part-fund the PACE Trial. Not only this, but Alyward sat on the steering committee for it as well.

    Alyward has also worked for health insurance giant Unum and headed the originally Unum-funded Centre for Psychosocial and Disability Research at Cardiff University. And the company is up to its neck in the psychologisation history of ME. Part of this involved the PACE Trial, since Unum had paid multiple authors on the study as advisors on ME claims. This included principal investigator Michael Sharpe.

    Unum’s DWP profiteering

    So, it was under New Labour that Alyward unleashed the biopsychosocial model and rooted it in the DWP’s approach to welfare. Of course, his work for Unum exposed the vested agenda for doing so. As Conrad Bower wrote for the Canary in 2016, Unum:

    is one of the UK’s biggest providers of income protection insurance (IPI) . As a consequence of more holes appearing in the social security safety net, more people are likely to take out IPI, increasing UPI’s profits.

    In other words, Labour’s DWP biopsychosocial-driven welfare reforms denying chronically ill and disabled people benefits, pushed them into the hands of insurance companies like Unum.

    But more than this, the insurance giant stood to gain from the psychologisation of ME/CFS too. In its 1995 ‘CFS Management Plan’, Unum called ME “neurosis with a new banner”. Of course, the not so subtle implication is obvious – trivialising the disease would enable the insurance company to not pay out on policies taken out by ME patients.

    Essentially then, New Labour’s welfare reforms helped facilitate this paradigm where health insurance companies could profiteer off of ME patients.

    Naturally, the Tories carried on this war against people living with ME. The PACE Trial part-funded by the DWP, punitive, ruthless social security reform after reform, and its persistent attacks on long-term sick people outside the workforce, have all been part of this.

    Throughout, the biopsychosocial model is the common thread, weaving it all together, and laying cover for their trivialisation of ME, and now, long Covid patients too.

    VRA corporate membership stuffed with vested interests

    Incidentally, Unum just so happens to also be a corporate member of the VRA too.

    Naturally though, it isn’t the only corporation with a vested interest in psychologising chronic health conditions like ME/CFS. Predictably, plenty of these grace the VRA corporate membership page of infamy.

    First up, there’s Swiss Re. PACE Trial lead investigator Peter White provided paid consultancy to the re-insurance company, alongside work for Unum. White held a web lecture with Swiss Re describing the findings of the PACE Trial. In this, he discussed the role of the insurer in pushing ME patients into work and how to manage ME claims. Among a litany of problematic things throughout, this stated that practitioners should deliver:

    active rehabilitation therapies… as opposed to sick role adaptation.

    Obviously, this was GET and CBT by any other name.

    However, these also weren’t the only corporations wrapped up in the biopsychosocial lobby for ME that appeared in the list. Alongside them was another notable company: Vitality 360.

    It’s a private fatigue clinic company – which purportedly treats people living with ME. As I previously reported for the Canary:

    Tellingly, the company’s core focus is on ‘rehabilitation’ – or in other words, getting people living with chronic conditions back to work. So of course, insurance companies aren’t amiss among its clients.

    But most significantly, PACE Trial author Jessica Bavinton owns it.

    ME/CFS and long Covid: Vitality 360 again

    Yet, this isn’t the only place Vitality 360 has cropped up in relation to the VRA either.

    Occupational therapist Beverly Knops is a trustee for the VRA, and works as an associate therapist for Vitality 360. What’s more, she previously held a role in the Bristol ME/CFS service. As if this wasn’t enough, her VRA bio states that she’s a trustee of the British Association of Clinicians in ME/CFS (BACME) – though its website doesn’t currently have her listed among its board.

    BACME is a controversial organisation the Canary previously wrote that:

    exists to underpin ME clinics and their clinicians operating across the UK. In January 2021, it registered as a charity. Currently, the non-profit has around 200 professional members who pay yearly fees [Pdf, p8]. It regularly hosts webinars and conferences for these members to network and exchange knowledge.

    BACME boasts that its charitable objective is the “relief of sickness for the public benefit”.

    However, its laudable-sounding aims obfuscate a contentious history in upholding a harmful status quo. For one, the organisation was the machination of notorious members of a lobby of medical professionals hell-bent on psychologising the chronic systemic disease. Members of the ME community sometimes refer to them as the “biopsychosocial” or “psych” lobby.

    The Canary has also written about the serious problems with the Bristol ME/CFS service. In particular, fellow BACME member Peter Gladwell runs it. He continues to push a “pacing up” – GET-lite approach to treatment for patients in contravention of the new NICE guidelines.

    On top of this, Knops and none other than Alyward rubbed shoulders at a BACME conference in 2009. BACME was then the CFS/ME Clinical & Research Network & Collaborative (CCRNC). Knops co-led a talk on “Helping people retain and return to work”. Meanwhile, Alyward gave the keynote on “Pathways to work”. Evidently, there’s a common theme in all this – and once again – it’s forcing chronically ill people into work.

    Shills for the insurance industry

    Yet, Knops also wasn’t the singular link to Vitality 360 and the insurance industry. Health insurance industry consultant Monica Garcia is also a VRA trustee, and notably, the Canary had previously flagged her appearing on Vitality 360’s website. Specifically, we wrote how:

    The company’s website doesn’t specify which insurance companies it has worked for. However, it does quote independent disability insurance consultant Monica Garcia. Garcia has worked in various roles for the UK’s Department for Work and Pensions (DWP). On top of this, she also held a senior medical claims role with major insurance firm Swiss Re.

    On Garcia’s LinkedIn profile, she wrote of her multiple roles with the DWP across a seven year timespan between 2003 and 2009. In one part, she revealed her biopsychosocial leanings, stating how she had:

    applied my Health Psychology Masters learnings to ensure disability is managed within a biopsychosocial framework of rehabilitation.

    Then, in another passage she explained one of her roles:

    supporting individuals in receipt of government income support benefits.

    Disconcertingly, she went on to express how doing this job “enabled” her to:

    then apply my learnings and develop bespoke strategies for the protection insurance industry.

    For nearly a decade after her DWP stint, she ascended the claims ladder at Swiss Re. She now runs her own consultancy firm for insurance companies and employers. Doing what exactly? You guessed it – trying to get sick and disabled people back to work. There too, Garcia has peppered the company’s website with references to the biopsychosocial model.

    Oddly enough, the bulk of her testimonials are from Vitality 360, including one from Beverly Knops. One of these is headed: ‘Early Intervention programme for Long-Covid’. It reads:

    We are thrilled to be launching our new long covid early intervention rehabilitation programmes for the income protection market. We have a sign posting template for assessors to use and case stories we can share as part of this package. Thanks to Monica Garcia for your support with this.

    It’s clear who Garcia and Vitality 360 are working in the interests of – and it’s certainly not long Covid patients.

    Coercing chronically ill people back to work

    Underpinning both the Tories and Labour’s back-to-work bluster for chronically ill and disabled people, it’s clear the biopsychosocial model has continued to rear its ugly head. Ultimately then, the new WorkWell programme shows just how little that is about to change under the new Labour government now too.

    Labour DWP boss Liz Kendall has been clamouring about getting long-term sick “economically inactive” people back to work. Routinely, she has couched this in the context of the post-pandemic surge in people going off sick.

    Naturally, many of these will be new ME/CFS and long Covid patients due to the coronavirus pandemic. In April, the Office for National Statistics (ONS) showed that over two million people in the UK were living with long Covid. However, this is probably an underestimate anyway. It’s likely there are many more living with it in reality.

    Despite this, the upshot is that this surge in post-viral chronic illness could well account for a significant proportion of the rise in long-term sick people not able to work. It’s these people living with ME and long Covid that Kendall and co at the DWP are aiming the WorkWell programme at.

    Yet, the VRA stacked with the biopsychosocial lobby will have its fingerprints all over it. If that’s anything to go by, the DWP and the DHSC – so the NHS, working in tandem with it – will do what it has done for multiple Labour and Tory governments. That is, mete out more abuse and harm to people living with ME/CFS – and now with long Covid patients in the firing line too.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • We should not allow assisted dying to sacrifice disabled people on the altar of the economy

    Prime minister Keir Starmer appears to be gearing up to fast-track new legislation to legalise assisted dying. This could see parliament holding a vote within weeks on this. However, the bill remains highly controversial – namely for the enormous danger it poses to chronically ill and disabled people.

    Assisted dying: Starmer to fast-track bill

    Currently, it is a criminal offence in the UK to aid someone in taking their own life via assisted dying – also known as assisted suicide or voluntary euthanasia. However, this could be about to change – and fast. The private members ‘Assisted Dying for Terminally Ill Adults Bills [HL]‘ would allow terminally ill adults with a life expectancy of less than six months to seek medical assistance to end their own life.

    Now, as News Hub has reported:

    Keir Starmer is privately preparing to push the legislation through by Christmas, much sooner than initially thought.

    Moreover, it detailed that:

     Although Sir Keir Starmer had avoided setting a specific timescale for a vote, a successful Private Members’ Bill ballot, which enables backbench MPs to introduce legislation, has sped up the process.

    Supporters of the bill have argued that giving terminally ill patients the choice to end their life is the empathetic and right thing to do.

    However, many also oppose the bill. Notably, many chronic illness and disabled campaigners have repeatedly resisted and spoken out against it.

    This is because, in a system that predominantly demonises chronically ill and disabled people, they argue it is a slippery slope.

    Crucially, this has been the case in other countries that have legalised it. While the current bill would legalise assisted dying for terminally ill people only at this point, it could pave the way to expanding the provision. And it could do this to dangerous effect.

    The Netherlands extended assisted dying to people with mental health problems, including children.

    Meanwhile, Canada extended its medically assisted in death (MAID) policy to chronically ill and disabled people. Most alarmingly, Canada offers this as an option to those who cannot afford care. There are anecdotal accounts of poverty and a lack of healthcare options driving disabled people to take their lives under MAID.

    All for the economy

    Moreover, even without these extensions, the current bill already plays into problematic narratives. Specifically, this is the idea that terminally ill patients are a drain on the economy.

    In fact, as the Canary’s Steve Topple previously highlighted, the poorly-worded framing of one such petition used this argument. Until change.org removed it due to an influx of complaints, this read:

    For those without compassion and reading this asking what the benefit besides letting people end things on their own terms, perhaps look at this as a way to save the NHS and DWP millions of pounds every year.

    Of course, if that rhetoric is also familiar, that’s because it should be. It’s this precise message that has been on the lips of DWP boss Liz Kendall as she has declared her war against the post-pandemic “economic inactivity” of long-term sick people.

    And behind the back-to-work bluster on reducing the benefits bill is the implication that chronically ill and disabled people cost too much money to support.

    Already, we’re seeing the results of this callous economy first mantra. First, Labour refused to scrap the two child limit on benefits that’s entrenching staggering levels of poverty.

    Then, it cut the winter fuel payment for millions of pensioners. It did this knowing it would likely kill thousands of elderly people this winter, as shown by the party’s previous estimations. Even the government’s own equality analysis identified how this will disproportionately harm disabled people. Specifically, it will cause 1.6 million of them to lose out on the vital support.

    What’s more, Labour is also staying wedded to a Tory-esque sanction regime for social security. The Tory-led DWP’s ruthlessly punitive benefit system has caused tens of thousands of deaths on its watch. Now, Labour look set to pick up where the Conservatives left off with this.

    In other words, Labour is implementing all these deadly policies in the name of saving money. Therefore, it’s easy to see how the government and right-wing actors that equate dignity with work, will push dignity in dying for those who can’t.

    No safe assisted deaths in a cruel, capitalist system

    The reality right now is that while the government and NHS are failing to provide access to adequate care, legalising assisted dying will put chronically ill and disabled people at risk. So long as that same system continues to vilify them, there’s every chance it’ll directly – or subliminally – push people to end their lives.

    In a compassionate, caring society, terminally ill people could choose to die with dignity. At the same, chronically ill and disabled people would have sufficient medical research, treatments, and support to live with dignity.

    There’d be no danger that the government or healthcare system would coerce them to end their lives. Currently however, we live in a cruel, capitalist society where it’s perfectly plausible that could happen.

    Featured image via the Canary

    By The Canary

    This post was originally published on Canary.

  • Deafblind UK to hold groundbreaking conference to smash stereotypes around the combined conditions

    Deafblind UK is proud to announce its highly anticipated 2024 conference, ‘Standing Out and Fitting In’, set to take place online on 3 October 2024.

    Deafblind UK: a groundbreaking conference

    This free, pivotal event will bring together individuals, professionals, and organisations dedicated to enhancing the quality of life for deafblind people. The conference will feature an impressive lineup of speakers, including a keynote from politician and supporter, Lord David Blunkett, and a session from HSBC Accessibility.

    Deafblind UK is a national charity supporting people with sight and hearing loss, enabling them to lead the lives they want. It is estimated that there are over 450,000 people living in the UK with deafblindness today.

    Combined sight and hearing loss is a growing issue in the UK, and predictions suggest that by 2030 there could be as many as 600,000 people in the UK struggling with it. This could be the fastest growing disability in the UK, yet many of us don’t realise that we’re affected by it or that there is support available.

    As the number of people living with deafblindness continues to rise, bringing awareness to their unique experiences and the societal barriers they encounter is both critical and timely. ‘Standing Out and Fitting In’ will offer a platform for enlightening discussions on the importance of community, accessibility, and the right for every individual to participate fully in society.

    Attendees can expect engaging talks, discussions, and networking opportunities that will highlight best practices and innovative strategies.

    A fully accessible conference

    Lord David Blunkett will open the conference with a keynote address. His experiences both personally and politically provide a unique perspective on the societal changes required to create inclusive environments for individuals with dual sensory loss.

    Senior Accessibility Manager of HSBC, Chris Bailey’s participation further underscores the event’s focus on collaboration between the public, private, and voluntary sectors to cultivate an understanding of best practices for inclusion in various settings.

    Also speaking at the conference are creator of Mixmups, Rebecca Atkinson, who will be talking about her story of combining the journey of sight and hearing loss with a successful career in children’s media, and Mirko Bauer, president of Deafblind International, who will be introducing Deafblind International’s Global Education Campaign.

    As part of its mission to amplify the voices of the deafblind community, Deafblind UK encourages individuals affected by deafblindness, family members, professionals, and anyone interested in disability advocacy to attend this virtual event. Attendance is free, and registration is now open via www.deafblind.org.uk/conference .

    To ensure everyone has a great experience at the Deafblind UK Conference, BSL interpreters, lip speakers, and captions will be available at all talks on the day.

    Deafblind UK: fostering an inclusive environment

    Nikki Morris, CEO of Deafblind UK, said:

    At Deafblind UK, we believe that every deafblind person has the right to fully participate in society, and this conference is an opportunity to highlight both the challenges and successes within the community.

    Through shared experiences, informative sessions, and collaboration, we aim to foster a more inclusive environment where everyone can thrive.

    Book your free place here.

    Featured image via Deafblind UK

    By The Canary

    This post was originally published on Canary.

  • Iain Duncan Smith think tank WILL be at the Labour Party conference – as WorkWell scheme embeds in DWP

    Iain Duncan-Smith’s notorious think tank the Centre for Social Justice (CSJ) looks to be behind a flagship pilot work programme the Tories set in motion during the last gasps of their decaying government. Crucially, the WorkWell scheme was one of the previous government’s major programmes hastening the Department for Work and Pension’s (DWP) invasion of the NHS. This was purportedly in a bid to drive down the numbers of unemployed long-term sick and disabled people.

    Now, local authorities are pressing ahead with the joint DWP and Department for Health and Social Care (DHSC) project – and it’s looking increasingly likely the new Labour government will pick up where the Tories left off and expand the programme. This is because the Canary can confirm the CSJ will be at the party’s conference.

    This is the final part of a three-article series exploring the influence of the dark money think tank the Centre for Social Justice, on the previous Conservative and current Labour government’s welfare programmes and policies. You can find part one here, and part two here. 

    DWP WorkWell: another work programme dressed up like caring

    In the Tories Spring budget of March 2023, it first introduced the novel health-linked work programme WorkWell. The government invited local care boards and authorities to apply to host the first round of these.

    So, just weeks before then prime minister Rishi Sunak announced the general election in May 2024, his government declared the launch of 15 WorkWell pilots. It stated that these would be set to start from October.

    However, it’s not clear if these will actually begin rolling out from October as planned. Notably, the government’s tender service lists just three local authority contracts for WorkWell pilots at present. Two of these only closed their tender applications towards the end of August – though for at least one, the award notice is due any day now.

    Largely, the scheme purports to focus on addressing chronically ill and disabled people’s “health-related barriers to work”.

    However, as the Canary’s Rachel Charlton-Dailey previously noted, this doesn’t appear to be what WorkWell will actually do in practice.

    Instead, as Charlton-Dailey pointed out, it boils down to a handful of physio sessions, some financial advice, and a support group for loneliness.

    It won’t address woefully inadequate, inaccessible, and punitive social security benefits. It doesn’t tackle poverty wage-paying capitalists parasitising profits from workers pushed into the precarious gig economy. The scheme does nothing to address enormous NHS underfunding, ballooning waiting lists, and the dangers of privatisation.

    In other words, it’s a similar story to its predecessor programme, Working Well.

    Welfare conditionality?

    Currently, the DWP appears to imply WorkWell will be a voluntary programme. However, there are sparse details on this at present.

    In theory, its devolved nature from the DWP suggests that linking benefits to participation in this isn’t necessarily the intention. Certainly, its prospectus doesn’t mention making the scheme mandatory for any particular group.

    Despite this, there are still a number of potential red flags which make it hard to fully rule it out. For one, while referrals can come through a number of places, one of course remains the DWP-run Jobcentres.

    There’s also the issue that this could be a pretext for the DWP sinking its claws into a number of public spaces. In other words, it could outsource the policing aspects of the welfare state to these public services.

    As the Canary has pointed out before, it’s similar to how the Home Office has co-opted health, and charity support spaces to target irregular migrants for detention and deportation. Specifically, the DWP lists how referrals could include:

    • GPs, and Primary care services
    • Employers in the area
    • Voluntary and Community Sector (VCS) services
    • Local authorities
    • Social workers
    • Other health related services in the area

    Therefore, if the DWP chooses to make WorkWell a mandatory work commitment for some Universal Credit claimants for instance, the department could invade these public spaces for this.

    In fact, if its predecessor is anything to go by, making benefits conditional on participation in the programme is also not a wholly unlikely possibility.

    WorkWell and the WCA

    That’s because Working Well did involve some mandatory participants. Long-term sick and disabled participants were voluntary. This was also the case for people the programme called ‘early entrants’. For instance, this included ex-offenders, homeless people, carers, and people living with alcoholism or drug addiction.

    By contrast, for those long-term unemployed for more than two years in the Universal Credit Intensive Work Search (IWS) group or receiving JSA, the DWP mandated the programme. However, the DWP did drop this requirement due to the pandemic and hasn’t implemented this since.

    Obviously, if WorkWell follows a similar approach, it won’t automatically coerce chronically ill and disabled people to work. Nevertheless, this could still pose a red flag in the context of broader reforms. Crucially, at the same time the Tory government announced the WorkWell scheme, it set out its plans to abolish the Work Capability Assessment (WCA).

    This would see the DWP roll its eligibility test for multiple benefits under one umbrella. In other words, it would mean people would need to get Personal Independence Payment (PIP) or Disability Living Allowance (DLA) to receive the health component of out-of-work benefits. However, as the Canary’s Steve Topple has previously reported, there are significant issues with this approach. He has highlighted that:

    The WCA and PIP criteria are completely different, as are the benefits. The DWP may be asking people for the same information about their illnesses or impairments. But the context is completely different. The WCA looks at what sick and disabled people can do regarding work. The PIP health assessment looks at what support people need. To combine both these assessments is simplifying people’s health. But more often than not, people’s health is not simple at all.

    Ultimately, what this could mean is that the DWP could in fact deny over 600,000 people their benefits. To date however, the new Labour government has yet to illuminate on its plans for this possible reform.

    Supposing it does follow through on the Tories’ proposal, it could potentially mean the DWP will therefore deny health-related out-of-work benefits to many long-term sick and disabled claimants. In effect then, they might fall in the DWP’s IWS group. And if the DWP mandates WorkWell for this group, it would mean some of those people will be chronically ill and/or disabled as well.

    Not in a vacuum

    Of course, the Tories didn’t introduce the new WorkWell scheme in a vacuum either. It accompanied a sweep of other repressive plans to ramp up sanctions and surveillance apparatus of the DWP.

    However, one notorious proposal stands out. This was Sunak’s so-called “sick note culture” guff. What does this have to do with WorkWell? Potentially, quite a lot.

    In the WorkWell prospectus, it details how the Tories intended to push fit note assessments under its remit. It stated that:

    in the Autumn Statement we set out plans for new ways of providing people receiving a fit note with timely access to work and health support, and our intention is that a small number of WorkWell Vanguard Partnerships will have the opportunity to support this work through small-scale pilots.

    It calls the areas set to pilot this “fit note trailblazers” and its ostensible aim is quite apparent. That is, to make it harder for people to obtain fit notes to be signed off work. It doesn’t take a lot to read between the lines to see that this was the Tories’ plan for this. It wrote that the pilot areas are:

    to ensure people who request a fit note have a work and health conversation and are signposted to local employment support services so they can remain in work. The trailblazers will trial better ways of triaging, signposting, and supporting people looking to receive a fit note and will be used to test a transformed process to help prevent people with long term health conditions falling out of work, including referral to support through their local WorkWell service.

    Outsourcing DWP contracts to private companies

    A poster on X has highlighted that this could also simply mean more of the same privatisation of welfare by the backdoor:

    So far, just one area – which happens to be Greater Manchester – has announced who it has awarded its WorkWell contract to. This was multinational services and accounting firm PricewaterhouseCoopers (PwC). However, this doesn’t appear to be for running the local programme. In this instance, it’s a contract for the design of the local scheme.

    And as the poster on X pointed out however, it could be similar private contractors who assess people for fit notes. That is, instead of a qualified GP, an assessor without medical credentials could determine if a person is fit for work.

    Similarly, while the Working Well programme ultimately signposted people to some local services as part of the scheme, the combined authority handed the main contract primarily to private outsourcing firms. This included Ingeus and Seetec Pluss – two companies regular to the DWP’s work programme and assessment service contract roster.

    So once again, private companies will likely profiteer from new DWP contracts. The main difference is that local authorities will be the ones handing them the reins.

    The DWP also awarded consultancy firm PA Consulting a contract to support the scheme at the national level. And interestingly, the company is heading to the 2024 Labour Party conference. It will be sponsoring a talk on AI in the public sector.

    Talking therapies via the DWP

    Of course, the ostensible justification for putting the fit notes process in the hands of WorkWell is supposedly to alleviate pressure from overstretched GPs.

    The irony here then, is that if WorkWell follows the pattern of its predecessor, where will the service signpost participants most often? Their GPs.

    But significantly, it’s possible that those GPs could then hand participants off to yet another service. Specifically, Working Well aligned GPs referrals to the programme with an expansion of:

    a bespoke ‘talking therapies’ service.

    It’s easy to see how this could have also worked the other way round in practice too. In other words, Working Well referred participants to their GP. Then GPs might have pushed some of these patients to the Talking Therapies service.

    Moreover, the Canary’s Steve Topple has extensively explored how the DWP has infiltrated the sanctity of healthcare spaces. This is where the Tories have overseen the process of a de facto DWP-NHS integration. Since 2014, it has been doing so with Improving Access to Psychological Therapies (IAPT) – the former name for Talking Therapies. Specifically, it has placed Jobcentre work coaches into therapy settings.

    What we could see then is WorkWell doing the same. Of course, this seems a significant possibility given the fact the Tories expanded Talking Therapies in tandem with announcing WorkWell in the first place.

    ME and long Covid participants

    Worse still, the nexus between GPs, Talking Therapies, and WorkWell could come at the harm of one significant patient group of over two million, likely more, and growing. These are myalgic encephalomyelitis (ME), and long Covid patients.

    Topple has underscored how NHS trusts already use Talking Therapies to treat people living with ME. He noted also how it’s likely they’ll do the same for long Covid patients. In particular, he wrote that:

    The potential with NHS England deprioritising long Covid treatment is that patients will end up with primary care practitioners offering CBT – which some trusts already do. Moreover, the cheaper version of this – called ‘behavioural activation‘, is already being trialled. As is the case with ME, CBT/talking therapies are cost-effective for the NHS, so it would be of little surprise if it pushed them for long Covid, too.

    However, it’s unlikely to stop there. At least not now there’s a new NHS-DWP back-to-work brainchild on the block – namely, WorkWell.

    Its prospectus references a vocational rehabilitation review as the main basis for its health interventions helping long-term sick people back to work. The DWP, alongside employers, unions, and insurers commissioned this.

    But notably, this only analysed studies on musculoskeletal, cardio-respiratory, or mental health conditions. Of course, ME and long Covid fall under none of these.

    Similarly, until the 2023 evaluation, the Working Well reviews had also solely considered various musculoskeletal problems in their analysis of physical health, alongside mental health conditions. These had included people having problems with their back, legs, feet, heart/blood pressure, breathing problems, diabetes, or forms of arthritis.

    In other words, there was no appropriate physical illness category that encompassed people living with ME or long Covid, and indeed a range of other chronic health conditions. Given the long history of clinicians and scientists dismissing ME – and now long Covid – as psychological, this poses a serious red flag.

    Psychologisation of chronic illnesses

    It was only the latest evaluation that acknowledged a range of chronic health conditions participants lived with, including ME. Again, it stopped well short of a full evaluation of the scheme’s impact on people living with these different health conditions. Tellingly however, it did identify one significant fact. That is, that participants living with ME had among the lowest:

    sustainment rates relative to their job entry rate

    Essentially, this meant that people with ME were among the least likely to sustain a job that paid the National Living Wage, proportional to the number that started in one.

    Therefore, people living with ME or long Covid may be understandably wary of the potential for psychologisation under WorkWell.

    And WorkWell’s vocational rehabilitation review also wouldn’t be the only study the DWP has commissioned to push sick people into work. Notably the flawed 2011 DWP-funded PACE trial set over a decade of psychologisation in motion for people living with ME, and now long Covid too.

    Biopsychosocial model

    However, there’s one issue in particular that should send alarm bells ringing for people with ME and long Covid. This is the fact the review promotes a biopsychosocial model for treating people with the range of conditions it assessed.

    In fact, the DWP discloses this much in WorkWell’s own prospectus, which says that:

    There is good evidence that we can support faster returns to work through interventions that take a holistic view of the barriers an individual experiences through their physical health, their psychological situation and their social situation – often referred to as biopsychosocial interventions.

    For people living with ME, a vested lobby of clinicians and scientists have pushed this treatment approach. It has embedded this psychologisation – and enabled healthcare professionals to force a harmful exercise therapy and cognitive behavioral therapy (CBT) on them.

    Of course, the review is applying this to musculoskeletal, cardio-respiratory, and mental health conditions – not ME or long Covid. Even so, the basic premise for it is no different. This rehabilitative dogma revolves around the idea of ‘patient beliefs’. In short, that a person’s very real physical pain and resulting disability is in their heads.

    Evidencing this, the review listed the World Health Organization’s (WHO) 2001 definition of BPS model. Notably, one part of this said that:

    the individual must take some measure of personal responsibility for his or her behaviour.

    Meanwhile, a narrative review it cited also stated that:

    Individuals with chronic illness and disability are among the most difficult patients to treat. The health-care provider is faced with an array of physical, psychological, and social factors, requiring adoption of a biopsychosocial approach to treatment. This approach necessitates consideration of the benefits for the patient of remaining ill and disabled. These benefits have been termed the ‘secondary gains’ of illness, and they may serve to perpetuate disability and illness behaviour

    So, this particular narrative review was ostensibly suggesting that some chronically ill and disabled people are choosing to stay sick. This will sound only too familiar for countless ME patients who healthcare professionals have gaslit, dismissed, and abused for years.

    Labour running with the CSJ’s ideas

    While the previous Tory government introduced WorkWell, the scheme will now proceed with Labour at the helm of the DWP and DHSC.

    Moreover, on 10 September, the DWP said in a press release that:

    The Secretary of State is also expected to outline her plans to devolve power to local areas so they can tackle inactivity with bespoke work, health, and skills plans, which are expected in a White Paper in the autumn.

    Obviously, it sounds a lot like more WorkWell. But then, given that Labour appear to be listening to the same dark money think tank seemingly behind the Tory pilot programme, it’s little wonder. At the end of the day then, it’s abundantly clear that Labour will be implementing the policies cooked up by the former DWP ‘grim reaper’ Iain Duncan-Smith’s infamous think tank. Labour can dress it up however it likes – but it’s simply wedded to more callous anti-welfare policies raring to compound the harms of repeatedly repressive Tory reforms – showing in reality, there’s really no difference between them.

    In fact, the Canary can now confirm that the CSJ is indeed headed to the Labour Party’s 2024 conference. It will be hosting a series of fringe events. Currently, the CSJ and the Labour Party’s conference agenda platform is light on the details for these. However, one is an event with both Greater Manchester mayor Andy Burnham, and DWP minister Stephen Timms as speakers. As we’ve already noted, both were commissioners for the CSJ reports calling for the new government to expand WorkWell style schemes. Crucially, the CSJ’s has listed it with the same name as its recent launch event for both reports.

    Ultimately, WorkWell looks like more of the same DWP infiltration of the NHS, outsourcing to the private sector, and pushing the onus of ‘overcoming’ work barriers on chronically ill and disabled individuals. The new Labour government’s Tory-esque fixation on the numbers of economically inactive speaks volumes. And what it says is – more WorkWell sham solutions are probably on their way to ‘fix’ the economy no matter the cost to sick and disabled peoples’ lives.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • DWP-backed, IDS-inspired Working Well scheme in Manchester is NOT actually working at all

    A fresh report from the notorious Iain Duncan Smith-founded think tank the Centre for Social Justice has called for the new Labour Party government to expand so-called devolution policies the Tories set in motion at the Department for Work and Pensions (DWP).

    In part one of this three article series, the Canary explored the CSJ’s influence over the previous Conservative government, and Labour’s welfare policies while in opposition.

    Specifically, the CSJ report touted the success of Greater Manchester’s Working Well programme. Crucially however, the think tank has vaunted this as a model for its potential to do one thing in particular. Unsurprisingly, that is – to save the government money.

    A devolved DWP work programme

    The CSJ’s report highlighted a £2.68 return on investment to every £1 over ten years which a 2019 evaluation of the programme had estimated. The CSJ report therefore argued that:

    The results suggest that not only could devolving employment support be a cost-neutral change in provision, but its success would actually save the Exchequer money over time as people returned to work – potentially billions of pounds if success is replicated nationally

    This appeared to apply to an earlier version of the programme – the expansion that the Greater Manchester Combined Authority (GMCA) ran until the end of 2019. By contrast, the GMCA told the Canary that:

    cost benefit analysis shows that there is a £1.75 return for every £1 invested.

    As such, it too emphasised the CSJ’s assertion that:

    The scheme delivered value for money

    However, this might be one of only things going for this ostensible work programme. That’s because, besides the return on investment for the government, it didn’t appear to actually help the bulk of the participants into fair-paying and rewarding work.

    What’s more, contrary to the regular right-wing rhetoric conflating work with wellbeing, the programme also hasn’t improved the health of the majority of participants who’ve taken part to date. In fact, it may have actually worsened the health of some who engaged with the scheme.

    Working Well: Work and Health programme

    So, what did the Working Well programme much-lauded and pushed by the CSJ actually achieve? Well, it was hardly the resounding success the CSJ and others have made it out to be. The Canary will focus on the third and ongoing version of the scheme – Working Well: Work and Health programme. This is because there’s more recent data and evaluations for this, with more in-depth analysis than for the pilot and expansion programmes.

    Largely, it involved appointments with a key worker, who would primarily refer participants for “support interventions” that were:

    delivered in-house, by external organisations within Greater Manchester’s support ecosystem or through access to online resources

    In practice then, this largely meant passing participants round to other services. Among the top were GPs – accounting for 10% of referrals, and the government’s National Career Service (NCS) amounting to 7%. Job search sites Indeed and the CV Library came in third and tenth at 6% and 1% of all signposts respectively. The programme also handed participants off to Transport for Greater Manchester in 4% of referrals. Citizen’s Advice also featured in the top organisations. Naturally, the Jobcentre also sat alongside these at 3% of referrals.

    In other words, the programme palmed participants off to a range of services they could already access. So, if it seems like a glorified work programme, that’s because it very much is.

    However, GMCA argued that:

    Everyone who is referred to the Work and Health programme is supported through a dedicated, personalised approach. The programme is designed to act as a one-stop-shop for employment support, connecting people to the right support at the right time, without duplicating existing services. Referrals can be made through different routes, including Jobcentre Plus, primary care, and community organisations.

    The programme is just one of many that delivers social, health, and employment support to residents in Greater Manchester. Since 2014 these programmes have supported more than 76,500 people in our city-region and helped 27,500 into jobs, performing strongly when compared to national contracts and despite higher rates of deprivation relative to other areas.

    Despite GMCA’s claims, its “one-stop-shop” did make nearly a third of referrals to just these large pre-existing services alone.

    In effect, it still meant key workers were telling participants to talk to their GPs about a health problem, or to look online on Indeed for job vacancies, or go to the Jobcentre.

    Of course, this begs an important question. That is, what precisely was the point of adding another middleman that sent participants back to the Jobcentre that likely referred them in the first place? Nonetheless, this was largely what Working Well comprised of.

    Passing the DWP buck?

    There was one community interest company among the organisations – though the evaluation included it twice due to its separate services for physical and mental health. This was Pathways CIC. Its website describes the help it provides to unemployed individuals as including:

    advice and guidance on looking for jobs, CV writing, job-keeping skills, job brokerage, employment law, and fast access to treatments including physiotherapy and psychological therapies as well as culturally sensitive services. We also provide services to help people deal with social issues including finances.

    Ultimately then, the programme placed the onus of economic inactivity on participants’ own failures. If disabled people couldn’t find an appropriately accessible vacancy in a job market where hundreds are applying to the same role, it’s their own lack of skills, qualification, and CVs to blame. If they’re unable to stay in inaccessible, non-inclusive workplaces, the individual must be doing something wrong. Unable to afford essentials in the spiralling cost of living? Nothing to do with the pitiful poverty pay from employers – it’s on you for your lack of budgeting.

    Moreover, the “fast access” to health services implies placing people in the hands of private providers. Essentially, it suggests the programme is giving priority access to healthcare to people seeking work.

    Energy supplier SSE also appeared in the top ten organisations the programme referred participants to. In a previous evaluation from 2020, water company United Utilities also featured high in the list of referral organisations. That is, Working Well got individuals to talk to the very private profiteering corporations lumping them with unconscionably unaffordable utility bills in the first place.

    A ‘range of services’?

    GMCA didn’t directly contest that the programme hadn’t addressed these systemic problems impacting marginalised communities the most. Instead it told the Canary that:

    the Working Well programme’s focus is on people’s personal journeys towards and ultimately into work. Societal and workplace barriers are tackled through other work by GMCA.

    Different people will have different needs, which may include skills gaps but also health concerns, housing issues, and any other barriers they may face to finding and sustaining employment. The Work and Health Programme recognises these challenges, which is why it takes an integrated approach to providing support.

    One example across a decade of delivery is how Working Well has acknowledged unmet need in relation to oral health and employment. Difficulties accessing dental treatment – a national issue – have left people living in pain, embarrassed, feeling judged, and unable to find work. In response, we set up Roots to Dental in collaboration with the NHS University Dental Hospital of Manchester to help people on the programme with quick and easy access to the dental care they need.

    The Working Well Work and Health Programme is one of a range of services and is not the only way through which the GMCA works to address societal or structural inequalities.

    Largely though, it’s clear the scheme itself has done little, if anything to address the actual societal barriers that exist for chronically ill and disabled people, and those in poverty.

    DWP back-to-work results fall short

    Not that this fact mattered to the CSJ or the DWP.

    That’s because, it all came down to the programme’s results. In short, the number of people it ‘helped’ into work. The problem is however, like countless other DWP work programmes, the scheme failed even on its own terms.

    Specifically, it had originally set targets for people starting jobs at a little under three-quarters of participants – 74%. As well as this, it aimed for 47% to achieve what it called its ‘Earnings Outcome’. It determined this as:

    Equivalent to working for 16 hours per week for 182 days at the adult rate (aged 25 or over) of the Real Living Wage.

    However, by the end of March 2023 it had met just 43% of job starts and 22% of the Earnings Outcome targets overall. But, you wouldn’t know that the programme fell so far short. Why? Because that’s not the story the evaluation is telling.

    In fact, the report claimed that the programme has so far met 96% of the job start target. For Earnings Outcome, it stated that it had hit 90% of the target.

    Naturally, this required quite the feat of mental maths gymnastics arrive at. And it did this like all great statistics soothsayers – by shifting the goalposts. Before changing these, it was only 58% on target for job starts and just 48% of the Earnings Outcome.

    Again however, GMCA contested this, stating that:

    It is incorrect to say that the programme is not meeting its targets. Greater Manchester is meeting the delivery targets agreed with central government.

    Programmes like this adapt and evolve over time, both at national and local level, in response to changing economic and social challenges. These adjustments have been made throughout the life of the programme, and if people face complex or multiple barriers to employment, they may require more time and support to find employment.

    Working Well not keeping people well

    Nonetheless, the measure of success for the Working Well WHP revolved almost solely around the rates of unemployed people the scheme has supposedly helped into work.

    The government, local authority, and corporate media have had much to say about this – despite these figures. They’ve said less – in fact, practically nothing – about the impacts it may have had on chronically ill and disabled people’s health and wellbeing. This is because in all the impact assessments and evaluations of the various iterations of the programme, none have actually properly explored this.

    The closest any of these come to doing so is in the most recent evaluation from 2023. In this, it held a survey of WHP participants’ “perception of their general health”. A similar number of participants reported improvement to the number that reported that their health had worsened while on the scheme – around 4% in each case. Therefore, it noted that there was “ close to no net change”. Overall, the vast majority indicated no change to their health.

    Notably however, just 8% of the participants – 732 – actually completed the survey, from the 38% of total participants – 8,878 – who started it. Of course, there’s no information on why so many participants dropped out of the survey.

    There could be a number of reasons for this, but one might be that some participants’ health deteriorated to the point where they couldn’t engage. As such, the results are neither a representative, or reliable measure of the scheme’s impact on participant’s health. In short: it’s a strong reminder that work should never be considered a health outcome.

    Barriers to work

    The Canary put this to GMCA, but it strongly refuted that the no one had evaluated the programme’s impact on participants health and wellbeing. It said that:

    This is not correct. All of Greater Manchester’s Working Well programmes are evaluated independently and published on the GMCA website. These evaluations include information on people’s health progression, both before and after participating in the programme.

    Moreover, it pointed the Canary to a table in one of the earlier evaluations we’ve accessed in the process of researching for this article. It showed how participants had ranked a range of barriers and whether they reported improvements as a result of the programme. According to this, 76% of clients with severe mental health and 69% with severe physical said this “barrier to work” had improved.

    However, there were two major issues with this.

    Firstly, the Canary had seen this but felt this did not constitute a proper evaluation of the impacts the scheme had on people’s health. All this shows is that participant’s health as a “barrier to work” had improved, which isn’t the same as saying that person’s health has. Moreover, the data was from a participant’s most recent ‘intermediate assessment’ – which take place every three months. Obviously, this only captures a snapshot and doesn’t look at participant’s health over the long-term or after the programme.

    But crucially, the GMCA had signposted us to a table for the ‘Working Well: Expansion’ programme – not the ‘Working Well: Work and Health’ programme we were enquiring about. As such, the data in the table wasn’t actually applicable.

    GMCA says…

    The Canary contacted the CSJ, GMCA, and the DWP Working Well providers. Only GMCA came back to the allegations.

    A spokesperson told the Canary that:

    Greater Manchester’s Working Well programmes are designed to provide personalised, dedicated support and advice to people who face complex or multiple barriers to finding work or sustaining employment.

    While Working Well helps people to overcome obstacles they face as individuals, we recognise the need to tackle societal and workplace barriers too. For example, through our Good Employment Charter we work with businesses to improve working conditions and access to employment, including promoting the benefits of equality, diversity, and inclusion.

    We’re also taking action to address social and economic factors that impact on people’s health and wellbeing, making it harder for them to access education, training and employment. Through our Good Landlord Charter and free Property Check service for renters we will drive up standards in social and private rented housing.

    To date the Working Well programmes have been defined at a national level, and Greater Manchester has managed them in accordance with these conditions. We are now setting out our ambitions for more devolved powers and responsibilities over housing, public health, and employment support, so that we can better join the dots between public service provision, work more closely with voluntary sector and community partners, and tackle the structural inequalities that people across our city-region face.

    Of course, this practically made the Canary’s point. Specifically, this is that Working Well did operate on the basis of asking individuals to “overcome” barriers. That is, instead of removing these systemic obstacles, the onus is once again on chronically ill and disabled people to deal with them. What’s more, it very well might be the GMCA has other schemes and plans to tackle these barriers – but the fact remains that Working Well has not largely done this.

    On top of that, it pointed us to written evidence the GMCA had provided to the Work and Pensions Committee. It outlined a number of achievements from the scheme, highlighting the following:

    • Integration with the wider Greater Manchester ecosystem (including referrals to external/other services including health, housing, skills &c.) was 10 times greater that through equivalent national DWP led programmes.
    • That despite disproportionately high levels of deprivation, the disproportionate impact of the COVID pandemic, and the doubling of the scale of programmes due to local matched investment, Greater Manchester performed well compared with other DWP provision. The devolved Working Well Work and Health Programme currently ranks 2nd out of the 11 contracts across the country in terms of job outcomes to date for the extension period since November 2022.

    The Canary assumes that the GMCA is referring to the DWP’s national Work and Health programmes across the UK. The DWP’s most recent data on this revealed a different story. This showed that in the year up to the end of May 2024, GMCA was ranking third for job outcomes. Overall, it placed much lower than this. Obviously, this calls into question whether the model has really set it apart from other work programmes.

    A thin veneer of progressiveness

    Even if the GMCA’s devolved DWP scheme had performed better than other national programmes, it still had plenty of shortcomings. One was that nearly 50% of the people who entered employment during the programme left their initial job anyway.

    Admittedly, around a third of these did start a second or third job. Despite this, they were far less likely to meet the programme’s so-called ‘Earnings Outcome’. In other words, it indicated that largely these were low-paying, insecure jobs. For instance, 7% of participants ended up in zero hour contracts as a result of the programme.

    Ultimately though, this is the model the CSJ is flaunting regardless.

    Nevertheless, its thin veneer of progressiveness can’t hide one crucial fact. That is, that its end goal has little, if anything to do with actually helping chronically ill, disabled, and other sidelined groups. In reality, it appears simply a new way of forcing them into the hands of the capitalist workforce. All without ever dealing with the capitalist system disabling and entrenching chronic illness in the first place.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • EXCLUSIVE: Iain Duncan Smith think tank behind latest DWP reforms targeting disabled people

    This is part one of a three-article investigation into the CSJ’s influence over the previous Conservative government, and Labour’s welfare policies while in opposition. In particular, it explores how the CSJ shaped the narrative over coercing chronically ill and disabled people into work.
    Part one will unpack the think tank’s role in pushing a particular work programme model. Part two will explore a UK scheme the CSJ has promoted as a basis for this. The final part will look at a new scheme the Tories launched over the past year inspired by that programme.

    Iain Duncan Smith’s think tank the Centre for Social Justice (CSJ) is peddling a model for Department for Work and Pensions (DWP) devolution of employment support. However, it looks to be little more than a progressive-sounding red herring. In reality, it seems like simply another repackaged work programme to coerce chronically ill, disabled, and other marginalised groups into work.

    Of course, it’s precisely why the supposed centre right CSJ has been playing the field with the Tories and the Labour Party to promote this. In fact, one Tory-introduced pilot programme exposes the extent of the CSJ’s influence on the previous government’s back-to-work reforms.

    Now that Labour has come to power, and just weeks ahead of the party’s conference, the think tank has thrown its lobbying machinery into gear. Specifically, it has drawn up a new report demanding Labour expand the Tories’ work on this.

    CSJ is lobbying Labour with new DWP reports

    On 3 September, the CSJ hosted a live event for the launch of two new reports. As the Canary previously noted, it coincided publishing these with the end of the summer parliamentary recess. The main report offers 50 recommendations for the new Labour government. These cover policy ideas in multiple areas across work, housing, crime, education, and family. Predictably, it put tackling so-called “health related economic inactivity” as one of the priorities under its work umbrella.

    By contrast, the other report targeted this directly, and the CSJ titled it:

    ‘Going Dutch: Devolving employment support and adult education to tackle economic inactivity’

    It explores three examples of this supposed devolved model implemented in different places. As the name suggests, one is in Holland. Another is based in Denmark. The final of these is in the UK – Greater Manchester’s ‘Working Well’ programme.

    The combined authority has run three main iterations of this since 2014. The first was a two-year pilot. Then, Greater Manchester followed this up with the expansion programme, running until December 2019. The latest of these, known as the ‘Working Well: Work and Health’ programme, is still operating until 2026.

    Greater Manchester have also hosted a number of additional spin-off versions of the programme targeting particular vulnerable groups.

    Crucially, the CSJ report boasted the scheme as a “roadmap” for greater devolution of the DWP’s so-called employment support. However, it isn’t the first time the CSJ has promoted Working Well. And significantly, its lobbying efforts have already led to the Tories introducing a new scheme with “its roots” in this.

    The ‘often forgotten sister to Universal Credit’

    Notably, it has made brief references to the scheme in previous reports too. It did so in an October 2022 CSJ publication named:

    Feeling the Benefit: how Universal Support can help get Britain working

    This called for the government to reallocate overspend on its failing Restart Scheme work programme to Universal Support. It has described this as the “often forgotten ‘sister’ to Universal Credit” and explains that it is:

    designed to help those facing barriers to the labour market into work and to overcome complex challenges holding them back in their lives.

    In principle, Universal Support sounds like a positive thing since it supposedly centres round removing societal barriers for disabled people.

    However, this doesn’t actually appear to be what the Universal Support programme the CSJ has highlighted genuinely entailed – but more on this later.

    CSJ calling to ‘roll-out a revamped’ work programme

    While it didn’t explicitly spell out the Working Well programme in the 2022 report, it did use it as a basis for its cost calculations for the roll out of Universal Support. In particular, this concerned the number of long-term sick “economically inactive” benefit claimants the CSJ has estimated want to work. However, as the Canary previously detailed, its methodology and information basis for producing the figure were significantly flawed. However, that aside, it wrote in the report that:

    This estimate is made using spending on the comparable Key Worker scheme in Manchester, Working Well, taking an individual cost-estimate and multiplying by the 700,000 people who would most obviously benefit from Universal Support if rolled out nationally

    Then, in an article for Tory news site Conservative Home, CSJ CEO Andy Cook wrote about Working Well, saying that:

    This programme is remarkably similar to the original design for Universal Support – the long-forgotten sister to Universal Credit. Now is the time to roll out a revamped Universal Support, using the huge underspend on the poorly targeted Restart scheme.

    In other words, it’s evident that Working Well encapsulates the CSJ’s vision for what Universal Support should look like. And crucially, long before its latest reports, it has been calling for more programmes just like Greater Manchester’s purportedly pioneering scheme.

    Tories take CSJ ideas forward

    The timing of Cook’s article was also telling. He penned this a week before the Tories’ Spring budget in March 2023.

    Why was this significant? Because, low and behold the Tories launched a sweep of new programmes just like those the CSJ had been calling for.

    A little on the nose, one is quite literally unoriginally-named Universal Support. To date, the details on this are few and far between. Primarily though, it seems to simply be a rebrand, or potential expansion of two existing schemes. The first was the government’s Work and Health programme. This was essentially the DWP’s non-devolved answer to Greater Manchester’s third Working Well programme.

    The second was the Individual Placement and Support in Primary Care (IPSPC). As the Canary’s Steve Topple noted on this before:

    the scheme isn’t actually being run by the NHS. Local authorities are applying for funding from the DWP. Then, they can use the cash to outsource the running of IPSPC to private companies or charities.

    Moreover, he pointed out that this US model of healthcare-based employment support was intended for people living with mental health conditions. Nevertheless, the DWP’s IPSPC programme would expand this out to chronically ill and disabled people. Coincidentally, or perhaps not, Greater Manchester also hosted the pilot for this. What’s more, Topple highlighted how a previous IPS scheme the DWP and NHS had already implemented for people living with mental health issues had been an abject failure.

    Enter DWP WorkWell

    Alongside these rehashed schemes posing as Universal Support was a pilot scheme supposedly devolving aspects of the DWP to 15 local authority areas. This is called WorkWell, and as its name suggests, Greater Manchester’s Working Well programmes inspired it. That’s according to the CSJ itself by the way – because evidently, it would know.

    From all this, it’s clear to see how the CSJ had a hand in shaping the Tories’ welfare agenda. Oddly enough, the think tank hasn’t exactly been shy about this either. In fact, it produced a whole infographic boasting its influence over the Tories’ spring budget announcement.

    On a page dedicated to showing off its ‘policy impact’, the CSJ pronounced it had:

    recommended a policy of Universal Support to help the hundreds of thousands of people who are not in work but wish to work. Working with the government we helped to design the programme that was announced by Chancellor Jeremy Hunt with a commitment of £1 billion investment.

    In short, the CSJ has been lobbying recent Tory administrations to implement this model en masse. And it appears as if the previous Tory government was listening.

    Labour listening too

    However, the Tories weren’t exactly the only ones taking input from the think tank. Notably, the infographic also detailed that the CSJ had engaged Labour alongside the Tory government to “pursue the issue”. It led to Labour’s then-shadow DWP secretary Jonathan Ashworth giving a speech at the CSJ in January, which the think tank also gloated about in its infographic.

    During the keynote, Ashworth mentioned Working Well too, calling the programme “inspirational”. He set out Labour’s plans to expand this approach, purportedly so:

    local areas themselves can build the integrated employment and skills support they need to stimulate economic growth, get more inactive adults including the long term sick and over 50s back into the labour force, help more adults into high-skilled, better paid work, and address the labour market needs of businesses and the local economy.

    Now, the CSJ’s latest reports have pushed for this again – and as the Canary has already noted, it published these just in time for conference season. Naturally, the CSJ is heading to the Labour Party conference – though currently, it has suspiciously removed its webpage advertising this.

    Moreover, we also highlighted Labour DWP minister Stephen Timms was among the people who commissioned the report. Alongside him sat none other than Labour mayor of Greater Manchester Andy Burnham. Burnham virtually Zoomed into the CSJ reports’ launch event. Unsurprisingly, he plugged the combined authority’s flagship scheme – along with the ideas in the CSJ’s report.

    CSJ holds sway over both parties’ DWP reforms

    Once again then, the lobbying attempts of an infamous DWP think tank show how there’s not really a fag paper between the Tories and the Labour Party when it comes to welfare.

    Of course, it should be no surprise that Iain Duncan-Smith vanity-tank and architect of the DWP’s disastrous Universal Credit benefit has continued to hold significant sway over the Tory-led department.

    Now, however, it’s clear it sees Starmer’s Labour as a new partner for its ‘workfare’ reforms at the DWP. But then, it’s hardly a surprise.

    That’s because, the party’s right has been in step with the vested capitalist-driven interests of this shadowy right-wing think tank all along. After all, it was the Tony Blair Labour government that started the war on sick and disabled people in the first place.

    That is, as the Canary’s Steve Topple has previously pointed out, in the late noughties, Labour did the thinking on health-linked welfare reforms to coerce chronically ill and disabled into work.

    For all current DWP boss Liz Kendall’s bluster about ending the “blame culture”, it sure looks like Labour will be largely singing from the same hymn sheet – one that the CSJ composed.

    Feature image via YouTube – the Centre for Social Justice

    By Hannah Sharland

    This post was originally published on Canary.

  • Remote working in decline – which once again ignores chronically ill and disabled people

    Over two thirds (64%) of professional services firms in the UK have stated that as of 2024, new job adverts will not feature the option of being ‘fully-remote.’ This marks a trend in the decline of remote working. However, as usual it’s chronically ill and disabled people who’ll bear the brunt of the shift. 

    The end of remote working?

    The decision, according to business leaders, is to encourage professionals to come back into the office – with close to half of hiring managers (42%) stating that they are ‘willing to wait’ for the right applicant who is able to commute into the office.

    The findings – from a survey by global talent solutions business Robert Walters, of 500 professional services companies in the UK – come amidst an all-time low in the number of fully-remote job adverts posted in the UK.

    According to data from LinkedIn, the share of remote positions posted on the job site has plummeted in the last 12 months. In the UK, remote job postings have dipped more than 13% since February last year – higher than in Germany, France, and the Netherlands.

    Gerrit Bouckaert, CEO of Robert Walters, said:

    Looking back to the jobs market a few years ago and employers were desperate for talent as they tried to navigate the post-pandemic bounce back. Companies were forced to meet applicants’ demands – which included accommodating remote work.

    Fast forward to 2024, and the power dynamic has shifted back in favor of employers – who have introduced a range of changes including true flexibility in hours, hybrid working, office refurbs, enhanced digital infrastructure, as well as endless soft perks such as free lunches.

    With that, employers want some give and take – and it seems the ‘take’ is fully remote working.

    Return to office or a rushed decision?

    According to the survey from Robert Walters, almost a quarter of professional services (23%) firms have stated that they have increased the number of compulsory days in the office in the past 12 months – by at least one additional day.

    A further fifth (19%) admit that ‘conversations are ‘on-going’ on whether they will increase in-office time to 4-5 days.

    Such a move will mimic the likes of Boots – who have requested administrative staff back into the office for five days a week from this month, and Santander who announced earlier this week that they intend to formalised a minimum three-day a week office attendance.

    Gerrit adds:

    What has been interesting to observe is the U-turn from big firms – such as Meta – who have typically led the way on workplace trends including being early adopters of remote working.

    Given it is too early to tell whether this method will result in increased productivity – other organizations should be mindful of jumping on the ‘bandwagon’ of a full return-to-office, without considering the impact this will have to your ability to attract and retain employees.

    Pressure builds on management

    Robert Walters analysts note the prominence of a ‘top-down approach’ to return-to-office – where managers are being asked to do more days in the office compared to their team.

    Recently, Barclays bank in London announced that it would follow its US-counterparts and push for a five-day return to office – with a number of VPs reportedly being told to come back to the workplace full-time from 1 June this year to help set a precedent. IBM informed their managers that they must be at the office, or meeting a client, for a minimum of three days a week. If not, they could leave the company.

    Gerrit adds:

    Whilst I am a complete advocate for management leading from the front, a ‘one size fits all approach’ to working practices does not lend itself well to diversity or inclusion.

    For example, with hybrid (or remote) working, managers who are working parents or carers get to reap the benefits of increased time with family whilst continuing to do their job effectively. Forcing them back into the office could be a significant disruption to their family life – both personally and financially if you consider childcare.

    Tracking your whereabouts

    For large, multi-site organisations the deterrent to increasing more days in the office has been the inability to keep-track of whether policies are being followed – according to the research from Robert Walters.

    Interestingly, the survey found that a fifth of company leaders (18%) would not be against linking pay and promotions to workplace attendance.

    Google made a similar move recently – with a memo revealing it will now track how often employees badge in and include in-person attendance in employees’ performance reviews. PwC – one of the world’s biggest consulting and accounting firms – announced plans to monitor its employees locations to ensure compliance with a stricter return-to-office policy that requires staff to spend at least three days a week, or 60% of their time, in the office or with clients.

    However, all this is also ignoring the accessibility needs of chronically ill and disabled people.

    Chronically ill and disabled people must not become an afterthought again

    One of the most significant advantages of remote working for chronically ill and disabled employees is increased accessibility. Traditional office environments often pose physical and logistical challenges that can exacerbate health issues.

    Commutes, office layouts, and inflexible schedules can all create barriers to success. Working from home allows employees to customise their workspaces to meet their needs, whether it’s having ergonomic equipment, access to medication, or simply creating a quiet, low-stress environment.

    Remote working also provides flexibility in managing health.

    Many chronic illnesses and disabilities require regular medical appointments or unpredictable rest periods due to flare-ups. In a remote setting, employees can often work around their health needs more effectively, without the added stress of explaining frequent absences or adjusting to rigid office hours. This flexibility not only boosts productivity but also improves job satisfaction, as employees feel more in control of their work-life balance.

    Another benefit is reduced fatigue and stress. For individuals dealing with chronic illness, the physical and mental energy required to commute, navigate office politics, or meet in-person demands can be overwhelming. Remote work eliminates the need for daily travel and allows for pacing throughout the day. Employees can take breaks when needed without feeling scrutinized, which is critical in maintaining both physical health and mental well-being.

    Remote working: going back to the past

    Gerrit concludes:

    The desire for companies to push for a return-to-office is born from economic instability and stalling growth. Employers are looking at ways they can improve their productivity and output – one of these being to go back to ways of working when ‘times were good.’ 

    However, in the increasing age of global-working and digital proficiency employers need to ensure they consider all the options available rather than returning immediately to the past for the answers.

    Featured image via Envato Elements

    By The Canary

    This post was originally published on Canary.

  • Maximus is co-hosting a talk at the Labour Party conference with DWP boss Liz Kendall

    Infamous Department for Work and Pensions (DWP) outsourcing company Maximus will be attending the Labour Party’s 2024 conference. Not only that, but the private firm will be co-hosting a talk with the Fabian society on ‘The Future for Work’. If it wasn’t bad enough that a US corporation with a torrid history of profiteering off the backs of disabled people thanks to DWP PIP is sponsoring an event on this, it only gets worse.

    That’s because Maximus will be in conversation with none other than ardent right-winger and Labour DWP boss Liz Kendall.

    Maximus: company heading to Labour’s annual conference

    Between Sunday 22 and Wednesday 25 September, the Labour Party is hosting its annual conference in Liverpool.

    Unsurprisingly, it’s a Who’s Who of private corporations schmoozing with Labour ministers and officials. Arms company BAE Systems is sponsoring a talk on the ‘Future challenges to defence’ with defence secretary John Healey. Naturally, it isn’t the only arms company sponsoring fringe events on Labour’s defence policy either. Others include for instance Northrop Grumman, and Babcock at two further talks.

    Big pharma companies have muscled their way in on fringe events from everything to do the ‘role of self-care’ in saving on GP appointments, to the NHS winter vaccine programme.

    Housing developers are sponsoring talks on Labour’s plans for more house-building. There are bigwigs from the finance sector in droves, and health insurance companies partnering on numerous events. Carbon sequestration corporation 1PointFive is funding a talk on ‘Working Together for a Net Zero Future’. It’s a subsidiary of fossil fuel firm Occidental.

    In short then, the 2024 Labour Party conference will be a display of the prominent corporate capture that’s become a fixture under Starmer’s leadership and Labour right.

    Given all these partnerships, Maximus looks right at home sponsoring an event on ‘The Future for Work’. The Fabian Society programme details how this will involve a conversation between DWP boss Liz Kendall, the Fabian Society’s general secretary Andrew Harrop, and Maximus’s UK president Dr Paul Williams.

    However, there’s a expansive litany of damning reasons the privatisation giant should be nowhere near a talk on Labour’s plans for work.

    A torrid history of Maximus and DWP PIP

    Maximus has long had its claws in the DWP. In less than the last decade alone, the DWP has handed the outsourcing giant 12 separate contracts.

    Of these, five are currently active. This includes a contract for running the DWP’s ‘functional assessment services’. Essentially, this means Maximus will conduct Work Capability Assessments (WCA) for Universal Credit, as well as Personal Independence Payment (DWP PIP) assessments.

    It also has contracts for multiple government work programmes, and a key government mental health service that purports to support people in the workplace.

    However, the company’s reputation precedes it – but notably, not in a good way. The Canary reported recently on this, writing that:

    If its name rings (alarm) bells, that’s because it should. For one, Maximus was the infamous company behind the 2017 Work Capability Assessment ‘Kill Yourself’ scandal. This was where the benefit assessor had been asking claimants why they hadn’t taken their own lives.

    But its record didn’t get better from there. Crucially, Maximus has overseen the process for many vulnerable claimants – and sometimes to fatal effect. Notably, this includes the claimant deaths of Alan McArdle, Jodey Whiting, and more recently, Philip Pakree.

    We detailed this in the context of the DWP handing the routinely disgraced DWP PIP provider yet more contracts. In particular, this was an extension for one of the department’s flagship work programmes, the Restart Scheme. Significantly, across two contracts, the DWP is funnelling over £200m to Maximus for this.

    However, here too Maximus has made a mess of things. Firstly, the Canary identified how providers, including Maximus, were failing even on the scheme’s own terms. Specifically, they weren’t hitting the programme’s already unambitious targets for helping participants into work.

    Even more telling however, was the fact that its vehement preoccupation with doing this actually harmed chronically ill people on the scheme. It perfectly encapsulated the glaring problem with the Tories – and now Starmerite Labour’s – fixation on work as a health outcome.

    Given all this, you’d think Maximus should have no business giving this talk at Labour’s conference. Only, its role in the welfare system to date may in fact perfectly align with Labour’s punitive plans for social security and work.

    DWP boss Liz Kendall’s back-to-work agenda

    Of course, we already know some of Kendall’s vision for the future of work and welfare. Primarily, she is picking up where the Tories left off.

    So far, Kendall has bandied about her plans to:

    reform so the department for welfare becomes a genuine department for work.

    Naturally, it panders to the right-wing rhetoric demonising benefit claimants as “scroungers”. This is the disgusting trope pushed vociferously by right-wing politicians and their corporate mouthpiece media.

    Largely, Labour’s focus has been on extending the Tories’ assault on the chronically ill and disabled people outside the workforce.

    In fact, Kendall wasted no time in getting started with this. Days after election, she was at a Jobcentre in Leeds. There, she pronounced the party’s agenda for tackling the soaring numbers of “economically inactive”.

    Ostensibly, this simply refers to unemployed people who aren’t actively looking for work. Crucially, Kendall herself pinpointed the 2.8 million of these who are off work due to long-term sickness.

    DWP PIP and the NHS

    Then, there’s the fact Kendall appears poised to sink the DWP’s teeth deeper into the NHS to help with this. As the Canary previously reported, since coming into power, Kendall has already met with former Blair health secretary-turned-Wes Streeting advisor Alan Milburn, and health secretary Streeting himself to hash out these plans.

    In a nutshell, Milburn was articulating the findings of a report he’d headed into “economic inactivity” and the benefits system. It called for the new Labour government to:

    integrate health services into job centres to unlock a hidden workforce of about 3 million “economically inactive” people who are without jobs

    Now, Kendall will be rubbing shoulders with a company that oversees social security ‘functional assessment services’ for the DWP. Obviously, with these, Maximus ultimately determines who’s fit for work. However, as we’ve set out above, it often gets this wrong – and caused claimant deaths in the process.

    Maximus is doing this in conjunction with its DWP work programme contracts. The DWP has long-designed these schemes to push people back to work, no matter the impact to participants.

    Cementing Labour’s lurch to the right on welfare and DWP PIP

    What’s more, it also isn’t the first time that Maximus has hosted an event at a Labour Party conference. In 2023, it sponsored a fringe event with then shadow health minister Andrew Gwynne. This was a discussion on how Labour could “improve the performance of health and care services?”

    Of course, Gwynne is now a full health minister at the Department for Health and Social Care. Obviously, in the broader context of Kendall’s plans for greater DWP-NHS integration, the privatisation giant with its claws in both, should be cause for concern.

    Under the Tories, Maximus has had its podgy profiteering fingers in numerous DWP pies. Already, the Canary has shown that under the new Labour government, the DWP has flogged a work programme contract extension to the dangerous company.

    Now, its appearance at Labour’s conference with DWP PIP boss Kendall in tow signals that Labour is probably set to continue the trend of handing the profiteering company enormous, multi-million pound contracts.

    Naturally, Labour knows the firm’s chequered record on the rights of chronically ill and disabled people. That it’s in bed with Maximus at its party conference anyway, shows where its allegiance lies. As ever, it’s with the parasitic corporate capitalists. In other words, it’s likely a sign of more of the same “hostile environment for welfare” that is to come under the new Labour government. The government can change hands, but the DWP and its outsourced services are as unfit for purpose as they ever were.

    Feature image via Youtube – Sky News/ the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • EXPOSED: Good Law Project reveals disabled children’s charity funnelling cash to Tufton Street

    The Good Law project has uncovered a donor to the shadowy network of right-wing dark money think tanks based at Tufton Street. Joining the ranks of its usual band of malign clandestine donors from fossil fuel firms, to tobacco corporations is UK nonprofit the Street Foundation. What does it exist to do? Help disabled children.

    Because nothing says disabled kids’ charity more than ploughing cash into the covert coffers of a bunch of Tufton Street cunts poisoning our politics and secretively backed by an infamous syndicate of planet-wrecking industries.

    Tufton Street: disabled children’s charity

    The Street Foundation’s page on the Charity Commission says that it makes:

    grants to individuals and organisations involved with children/young people with a disability/special needs.

    There’s no website (that I can find), so fuck knows how individuals and orgs are meant to go about applying for these grants. Of course, if you’re in the know, you’re in the know. And the scheming sycophants at 55 Tufton Street are tapping their noses all the way to the bank.

    That would be because, the Good Law Project found the so-called charity funnelling £749,000 – more than 40% of its funding over the last five years – to a conniving congregation of just such dark money think tanks at the notorious London address.

    The Street Foundation threw a nice chunk – over a third – of this dosh to the New Culture Forum (NCF). It’s helping disabled kiddos out by seeking the abolishment of the Equality Act. Because why would a disabled child need protection from discrimination across any realm of public life?

    But don’t say it hasn’t got disabled children’s back at school. The NCF is countering the “left-wing bias” evidently rife in academia and the media.

    Lining up for the Street Foundation to line its pockets next? The shady Institute of Economic Affairs (IEA). Notably, the Street Foundation gave the free market think tank with the best worst history of political influence £55,000. Quietly likely the largest lobbying force behind Thatcher’s neoliberalism, the think tank has a nefarious rap-sheet of promoting capitalist vested policies.

    As the Good Law Project has pointed out, the IEA’s work has been the literal antithesis of championing disabled children’s rights. In particular, it noted how:

    Speaking on the institute’s podcast in May, editorial and research fellow Professor Len Shackleton tried to make a contrast between people with “genuine problems” and “areas in which it’s really not possible to get inside people’s heads” such as back health and mental health. The group also published a report in 2016 which suggested people could opt out of Employment and Support Allowance, and “take out private disability insurance instead”.

    As for the rest, the Street Foundation poured it into a murky mix of right-wing pressure groups. This included climate denial and Brexit-pushing organisations like Civitas, the Global Warming Policy Foundation (GWPF), The Politics and Economics Research Trust (PERT), and the Hampden Trust.

    In bed with the Tories and Reform

    However, if you thought that was the end of this whole despicable fiasco, buckle up.

    The Good Law Project identified that the Street Foundation gets the bulk of its funding from aerospace company HR Smith Group.

    So, a corporation supplying equipment to military planes is a Tufton Street front-charity’s biggest benefactor – go figure. But the social-washing implications are just the start. Significantly, as it turned out:

    one of its subsidiaries, TechTest. HR Smith Group has also given £50,000 to Reform UK and £10,000 to the Conservatives, while TechTest has given £890,000 to Reform, UKIP, the Tories, and campaigns to leave the European Union.

    Lets get this straight then. An aerospace company is donating to a supposed disabled children’s charity. At the same time, that very corporation has been donating to the right-wing goons at Reform UK and the Conservative Party. That charity is then funnelling a sizeable wedge of its funding to a unscrupulous assemblage of right-wing think tanks. Those think tanks are surreptitiously lobbying the same hard right parties and politicians.

    One person on X wondered if the ostensible slush fund set-up might have something to do tax deductions:

    A new scummy right-wing corruption term just dropped:

    Funnily enough, or perhaps not so much, TechTest CEO Richard Smith and his immediate family are the trustees of the Street Foundation. He also just so happens to own the building that hosts this group of shadowy think tanks.

    In the tangled web he’s woven, Smith also serves on the NCF’s advisory committee. What’s more, the Good Law Project pinpointed his membership of yet another notorious Tufton Street heavyweight – the Taxpayers’ Alliance.

    Charities a ‘slush fund’ for capitalist interests at Tufton Street

    Given the absolute state of all this, people on X were calling for the Charity Commission to intervene. However, some understandably didn’t have much faith in the spineless body:

    One reason for this was a beneficiary of the Street Foundation’s right-wing funding frenzy. Specifically, the GWPF:

    Notably, the Good Law Project has also been challenging the GWPF’s status as an education charity. In October 2022, a cross-party group of MPs lodged a complaint against it. This was for pouring thousands of pounds into climate denial campaign group Net Zero Watch, and research downplaying the climate crisis.

    Ultimately, the Charity Commission took GWPF trustees at their word about its funding. It ignored extensive evidence of the ‘charity’s’ fossil fuel-linked financiers. Naturally, it imposed no sanctions on the group for its dodgy activities.

    Of course, this is the same GWPF that longtime Labour MP Graham Stringer is a trustee.

    Similarly, the Charity Commission gave the IEA just a light slap on the wrist for its duplicitous work in 2018. This was for the IEA – again marked an educational charity – publishing a report calling for a hard Brexit. Crucially, this constituted a “political activity” in breach of its charity status. For its illicit manoeuvre? Just a legal warning.

    Bigots boasting charity status

    Moreover, speaking of dubious charitable credentials, some astute posters highlighted a certain hate group that also sits on the ill-reputed London lane:

    Of course, despite its vehement campaign of transphobia, the Charity Commission awarded the group charity status in 2021.

    Given the Charity Commission’s half-assed response to a slate of the Street Foundation’s Tufton Street donees then, there seems a fat chance it’ll come down on the charity with any real force.

    A poster on X summed up the whole fiasco in a nutshell:

    Just when you think the evil actors at the infamous London location couldn’t get any worse, they go one step further. Using a purported disabled children’s charity as a front for funnelling cash into its toxic network is a new, disgusting low.

    Feature image via Youtube – Led By Donkeys

    By Hannah Sharland

    This post was originally published on Canary.

  • 3D room scans show the harrowing reality of life with severe ME, trapped in a neglectful household

    A former architecture student living with severe myalgic encephalomyelitis (ME/CFS) has created a series of 3D room scans to show what life with the devastating disease is like. From the small world that is her bedroom, 26-year-old Katiana has produced the series of images to illustrate how Greece’s dire lack of services for people with her chronic illness is trapping her in an increasingly dangerous situation.

    Unconscionably, this is that Katiana’s abusive parents are putting the life of their daughter at enormous risk. Most alarming of all, if things don’t change – and fast – Katiana is scared she’s going to die.

    A life ‘full of promise’ lost to ME/CFS

    Katiana reached out to the Canary with her story, in what she described as her “last attempt to be heard”. She told us that:

    At just twenty-three years old, my life was full of promise. I was an architecture student, an athlete, and a high achiever, on the brink of earning my degree and pursuing my master’s abroad.

    Katiana facing a bright sunset.
    Katiana’s life before.
    Katiana in yellow trousers and a black top clambering on large tumbling concrete bollards.
    Katiana adventuring before she got sick with ME and long Covid.

    Then, the pandemic struck, and everything changed. Ever since, Katiana has been battling the relentless, life-altering symptoms of long Covid and ME/CFS.

    ME is a chronic systemic neuroimmune disease which impacts around tens, if not hundreds of millions people worldwide. Similar to, and sometimes overlapping with long Covid, it affects nearly every system in the body and causes a range of symptoms that impact patients’ daily lives. These include influenza-like symptoms, cognitive impairment, multiple forms of pain, and heart, lung, blood pressure, and digestive dysfunctions, among other significantly debilitating symptoms.

    Eight squares showing a range of Katiana's symptoms. Top left displays her smartwatch showing her heart rate at 154 bpm while standing. Next over shows a rash on her foreleg. Across from that shows the palm of her hand going bright red. Top image on the right is Katiana's closed eye looking swollen. In the bottom left, Katiana is holding a clump of her hair that's fallen out. Next over is her stomach bloating. Then, the picture alongside this shows her swollen lymph nodes in her neck. Final image is more blotchy skin with hives on her arm ME/CFS severe ME
    Some of Katiana’s symptoms.

    Significantly, post-exertional-malaise (PEM) is the hallmark feature of ME, which entails a disproportionate worsening of other symptoms after even minimal physical, social, or mental activities.

    Meanwhile, long Covid shares many pathological overlaps with ME. Both are viral onset illnesses – meaning that they’re typically triggered by a viral infection. Studies have shown already that over 50% of people living with long Covid meet the diagnostic criteria for ME.

    To make matters worse, these aren’t the only chronic health conditions Katiana lives with either. Like many people living with ME, she also experiences a number of other comorbidities. This includes mast cell activation syndrome (MCAS), and craniocervical instability (CCI), postural orthostatic tachycardia syndrome (POTS), dysautomnomia, and probable Ehlers Danlos Syndrome (EDS).

    Severe ME/CFS strikes

    At least 25% of people with the ME/CFS live at the severe end of the scale.

    In these cases, people living severe ME are mostly, if not entirely permanently bed-bound or hospitalised. On top of this, they are often unable to digest food, communicate, or process information and are fully dependent on others for their care.

    For the last year and a half, this has been Katiana’s reality. She told the Canary that:

    My condition has been very severe to the point that I’m in agony and pain everyday. I’m almost entirely bedbound – only getting up to go to the bathroom. This causes a lot of distress, pain, and struggle. I can’t tolerate light or sound and I’m unable to speak most of the time. Doing so makes me worse as I’m in a constant crash, since I’m not able to pace myself.

    She described how she lives in constant pain. Katiana wanted to drive home that:

    I can’t even bathe or take care of my basic hygiene.

    Crucially, severe ME can be fatal – as the recent inquest into the death of Maeve Boothby-O’Neill is a harrowing reminder of. Maeve came up against an uncaring, unequipped, abusive healthcare system in the UK which ultimately killed her. Now, Katiana is afraid that the apathy of the Greek government and healthcare authorities towards people with chronic health conditions like hers will do the same.

    Despite the widespread impact of long Covid and ME, she explained to the Canary that there is a significant lack of resources and assistance for those suffering from its long-term effects. A 2021 survey of clinical experts across Europe sought to establish GP knowledge and understanding of ME. It found that:

    Widespread disbelief in the existence of ME/CFS was reported as a factor limiting provision of specialist care in Greece.

    Largely, this has been her experience too. Notably, she expressed how – much like Maeve and others including Millie and Carla battling the NHS in the UK – clinical care staff have mistreated her during many hospitalisations in Greece’s healthcare system. And like Maeve, Millie, and Carla too, the hospital clinical staff have made her condition significantly worse. Katiana explained that:

    I went from moderate ME to severe in a year.

    Boxed in from all sides

    However, Katiana’s home environment is no safer. Using her architecture skills, Katiana has generated 3D scans of the bedroom in which she ekes out the daily realities of life with severe ME/CFS and her other devastating conditions:

    Aerial view 3D scan of Katiana's bedroom. Alternating square tiled floor. A bed with scrunched up blankets and pillows in the top left corner, with a small bedside table cluttered with items. More cluttered furniture along the bottom of the room. A window along the centre of the left wall and a door in the centre of the right wall. Posters and pictures above Katiana's bed along the top wall ME/CFS severe ME
    Aerial view 3D scan of Katiana’s bedroom. Alternating square tiled floor. A bed with scrunched up blankets and pillows in the top left corner, with a small bedside table cluttered with items. More cluttered furniture along the bottom of the room. A window along the centre of the left wall and a door in the centre of the right wall. Posters and pictures above Katiana’s bed along the top wall
    View inside Katiana's room from a 3D scan. Alternating square tiled floor. A bed with scrunched up blankets and pillows in the top left corner, with a small bedside table cluttered with items. More cluttered furniture along the bottom of the room. A window along the centre of the left wall and a door in the centre of the right wall. Posters and pictures above Katiana's bed along the top wall ME/CFS
    View inside Katiana’s room from a 3D scan. Alternating square tiled floor. A bed with scrunched up blankets and pillows in the top left corner, with a small bedside table cluttered with items. More cluttered furniture along the bottom of the room. A window along the centre of the left wall and a door in the centre of the right wall. Posters and pictures above Katiana’s bed along the top wall

    Of course, as for many people living with it, this is her whole world. It’s a stark, but poignant depiction of life with severe ME. Katiana’s cuboid room could be a metaphor for the walled existence, boxed in by intensely debilitating illness and a medical establishment that gaslights, neglects, and seals lives away under a psychologising lid. Or, the repeated rectangular patterns throughout her bedroom could pose as an allegory for the way clinicians try to force multi-faceted chronic illnesses into square-shaped holes.

    But Katiana’s haunting images conceal a particular, vital message: her urgent plea for help. Because the Greek government and healthcare system aren’t the only ones putting her life at enormous risk. Katiana’s parents are too. Currently, she is trapped in their abusive household.

    She told the Canary how:

    My parents use their little financial support as a tool of manipulation, choosing which doctors I can see and refusing to cover the specialists I need. This form of control extends to every aspect of my care, as they deny me access to necessary medical aids like a wheelchair or commode, equating their use with giving up. This forces me to rely entirely on their approval for my basic needs, stripping me of autonomy.

    Alongside this, she explained that they consistently gaslight her. She said that they do so:

    by dismissing my legitimate health concerns, questioning the severity of my illness, and accusing me of overreacting. They also gaslight my nurse, denying that they do anything harmful, even when confronted with evidence of their actions.

    However, their gaslighting is just the tip of iceberg. For Katiana, her MCAS can cause symptoms like hives, swelling, difficulty breathing, fainting, severe gastrointestinal issues, and anaphylaxis. She said that:

    Despite having explained this, my parents continue to use products that trigger my symptoms, putting my life in danger.

    And disregard for her condition is a recurring theme. Her parents refuse to acknowledge how external stimuli worsen her severe ME. This means they frequently expose Katiana to loud noises which exacerbate her condition. What’s more, they don’t take Covid precautions, putting Katiana at risk of contracting it and further endangering life.

    Besides this, they’ve denied Katiana access to a commode, and have restricted her access to a nurse. She cooks suitable food that Katiana can tolerate with her multiple gastrointestinal problems. To date, she has been the only person able to help Katiana. She regularly challenges Katiana’s parents on their abusive, neglectful treatment. However, she’s come up against a brick wall in petitioning them for the necessary environmental adjustments that Katiana desperately needs.

    Katiana therefore feels that:

    Their care oscillates between neglect and harmful intervention, making my condition deteriorate further. In other words, they’re exhibiting all the characteristics of narcissistic abuse, and with it, making my health inordinately worse.

    Ignoring and threatening medical professionals that try to help

    Katiana wanted the Canary to see some of her medical reports. These were from the various doctors she has gone to for support. None of these were based in Greece, because she has only found one doctor knowledgeable on ME/CFS in the country. However, her father dismissed and threatened them when they tried to help Katiana.

    In the reports she shared with the Canary from multiple international clinicians, including severe ME specialist Dr William Weir in the UK, the “irreversible” impact of her parents maltreatment and abuse, and the fact they’ve stopped her getting crucial treatment, was a recurrent issue they raised.

    New York-based ME specialist Dr Susan Levine is one such doctor who has evaluated Katiana’s condition. In her medical report, Levine emphasised that:

    Katiana is extremely disabled and can barely walk two steps out of her bed due to her profound fatigue. Furthermore, it can cause her irreversible harm to attempt to do more even on her betters days”

    Another, from a neurosurgeon in Barcelona identified the danger of leaving Katiana’s CCI untreated. CCI presents as increased mobility at junctions in the neck and causes a range of devastating symptoms. The specialist has advised Katiana she needs urgent treatment for this, but she’s unable to get there for care. He impressed in his email that Katiana needs the operation “as soon as possible” to:

    avoid arriving to a state of irreversible damage.

    Despite the comprehensive notes from these international experts, her parents have continued to ignore their advice. Instead, Katiana explained that they have taken the word of doctors that confirm their own preconceptions of her illnesses and needs.

    To make matters worse, her father has sought to cut her off from those trying to help her. She explained how he’s threatened legal action against doctors, her psychologist, and organisations who’ve tried to advocate for her needs. She said that:

    They are trying to manipulate people into thinking that I am a mental patient.

    Severe ME/CFS and narcissistic abuse: a life ‘already dead’

    Katiana wanted to make clear that her parents aren’t physically abusive. However, their neglect and psychological abuse has made her life increasingly unbearable. Katiana told the Canary that the stark contrast between her life and her parents’ has made her situation profoundly more distressing:

    I feel as if I’m already dead. My parents go on with their lives, completely in denial of the seriousness of my illness. While I struggle to survive each day, they continue to enjoy life without any sense of guilt, as if my suffering doesn’t exist.

    My parents act as of what they can see. They’re not asking how I feel and what I experience.

    Of course, she isn’t the only person living with this devastating disease whose families’ have gaslighted, abused, and trivialised their condition.

    The Canary previously reported on Anna’s appalling situation in Australia. Similarly there, abusive healthcare professionals, woefully unequipped domestic abuse services, and gargantuan gaps in state social care support continue to trap Anna in an abusive household. Like Katiana, her abusers are dangerously worsening her severe ME/CFS by the day.

    There are many other anecdotal stories from people living with ME who’ve come up against stigma, disbelief, and active harm from family and friends.

    Once again, Katiana’s experience underscores the global scandal that is the abysmal treatment of people living with ME and other stigmatised chronic health conditions.

    Katiana summed up the desperate circumstances the lack of state and medical support is forcing her into:

    My situation is dire. I desperately need to get away from my family, who have been gaslighting psychologically abusing me even before my illness. Now that I am so ill, that narcissistic behaviour is putting my life in danger.

    I want you to tell the world that I’ve tried everything. It has been almost three years. I have a strong will for life but I’m suffering a lot. I’ve asked organisations and people for help, but nobody listens, nobody helps.

    For some like Katiana, the dangers of abusive medical care are matched equally by the abuse and neglect of narcissistic family care-givers at home. When neither home, nor hospital is safe, where can drastically chronically ill severe ME patients like Katiana go? Currently, nowhere exists. This urgently needs to change before Katiana, Anna, and many others lose their lives to the society that has abandoned them for far too long.

    How you can help

    What Katiana needs:

    • A carer, nurse, and advocate for at least twelve hours a day.
    • A safe place to stay, with an environment appropriate for her severe ME/CFS (low light, sounds, chemical free etc.)
    • A specialist or knowledgable doctor
    • Financial Support for both her living and medical supplies, doctors appointments, future interventions

    Therefore, there are a number of ways people might be able to assist Katiana:

    • If you are, or know of a service provider for family abuse specifically for disabled people or other services equipped to help Katiana, please contact her. Katiana has already tried social services. Unfortunately, for patients with ME and long Covid, those organisations can sometimes institutionalise them.
    • Support her financially as she tries to access medical supplies, doctors’ appointments, and most importantly, a chance to leave her household with access to hire a full-time carer. You can donate to Katiana’s fundraiser here.
    • If you can provide a quiet place to stay, please contact her.
    • If you know of any specialist or doctor who is willing to advocate for Katiana, please speak with them and let her know.

    You can reach Katiana via her profile on X.

    Featured image via Katiana/the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • The DWP is HARASSING vulnerable claimants via text message – despite a recent scandal

    The Department for Work and Pensions (DWP) has been under fire for pursuing unpaid carers over alleged overpayments of DWP Carer’s Allowance. It was a decision that has sparked outrage among advocacy groups and the carers themselves. However, now thanks to a parliamentary question from a Lib Dem MP, we also know that the DWP has been piloting harassing unpaid carers via text message, too.

    What is DWP Carer’s Allowance and the overpayment scandal?

    DWP Carer’s Allowance provides just £81.90 a week to those who care for someone for at least 35 hours a week. However, if a carer earns even slightly more than £151 per week from other employment, the DWP deems the entire allowance an overpayment and demands repayment, often in lump sums or monthly deductions.

    As of mid-2024, around 134,000 unpaid carers will have to repay a cumulative total of £250m, adding further strain to already vulnerable households.

    These individuals, who provide vital, unpaid care for loved ones, are being asked to repay millions of pounds after unintentionally exceeding income thresholds. This has caused significant financial distress for thousands of carers, many of whom are already struggling to make ends meet.

    Harassing unpaid carers

    Yet still, the government saw fit to trial a scheme of text messaging DWP Carer’s Allowance claimants when they either had been overpaid or were at risk of being. The trial for this originally began in May. Then, in August Lib Dem MP Wendy Chamberlain asked DWP boss Liz Kendall:

    with reference to her Department’s strategy entitled Fighting Fraud in the Welfare System: Going Further, updated on 13 May 2024, whether she plans to continue the roll out of alerts telling carers that they have a possible overpayment of Carer’s Allowance.

    DWP minister Stephen Timms said:

    The Department is currently assessing the results of a recent trial that issued an SMS message to prompt Carer’s Allowance recipients, to remind them to contact the department to report a change of earning. Changes of circumstances can be reported through Gov.uk, telephony and post.

    In May, Carers UK welcomed the move – albeit with some caveats.

    Of course, in reality harassing already at-risk claimants via their phones – instead of investing in a system that actually functions properly – it simply not good enough. It serves little more than to strike fear and worry into claimants – and, as always, is putting the onus and blame onto them for the DWP not being fit for purpose.

    In reality, the fault here is the DWP’s.

    The DWP Carer’s Allowance scandal is its fault

    As MoneyWellness reported:

    Most overpayments were made because of people going over the earnings limit, while others were mistakes by the Department for Work and Pensions (DWP). Fewer than 500 cases were due to fraud.

    Over two thirds of overpayments (70%) happened when people went over the earnings limit because of:

    • fluctuating earnings, like zero-hours contracts, being self-employed or doing shift work
    • working extra time, for example by covering a colleague or working slightly over your shift
    • getting a pay rise or minimum wage increase
    • getting extra pay one month, such as holiday pay or a bonus
    • employer mistakes

    Carers UK say many carers don’t understand the rules around the earnings limit.

    So, in reality only 0.4% of DWP Carer’s Allowance overpayments were due to fraud. The rest were ultimately the DWP’s fault – either through it’s mistakes or through a system that is impossible to navigate. None of this accounts for the 500,000 people not claiming Carer’s Allowance – worth over £2bn. Nor does it factor in the institutionalised misogyny, here – as 73% of unpaid carers are women.

    Overall, the impact of the Carer’s Allowance repayment scandal on unpaid carers cannot be overstated.

    A devastating impact on unpaid carers

    Many carers, already battling financial hardship, now face the prospect of being pushed deeper into poverty due to DWP Carer’s Allowance demands. According to Carers UK, around 44% of working age unpaid carers live in poverty. It also found 36% of unpaid carers have had thoughts of suicide or self-harm. This is among carers who reported having bad or very bad mental health. Other findings from Carers UK include:

    • 28% of carers have bad or very bad mental health.
    • 54% of carers have suffered physical health problems because of their caring role.
    • 20% of carers have suffered a physical injury from caring.
    • 88% of carers have difficulty sleeping.
    • 85% of carers have continuous low mood.
    • 82% of carers have feelings of hopelessness.

    These figures underscore the extreme emotional and financial toll on people who are simply trying to provide care to their family members, often at great personal sacrifice.

    Personal testimonies further illustrate the devastating impact of these overpayment claims.

    Losing homes and suspended prison sentences

    One carer, a mother looking after two disabled sons, was asked to repay £17,000. Another carer, juggling part-time work with the care of a disabled parent, described how the unexpected debt had left her “on the verge of losing [her] home.” In one case, an unpaid carer was given a suspended prison sentence and required to wear an electronic tag.

    The recurring theme among these carers is a sense of betrayal by the DWP, which they feel is punishing them for honest mistakes or oversights in navigating the complex rules of Carer’s Allowance eligibility.

    Critics argue that the DWP Carer’s Allowance pursuit for overpayments is not only cruel but counterproductive. Unpaid carers save the UK economy an estimated £160bn annually by reducing the strain on formal healthcare services. To penalize them for earning a few pounds over the threshold, especially when these earnings are often necessary for basic survival, seems both harsh and illogical.

    Moreover, many carers report that the process of calculating earnings and allowance eligibility is far from straightforward, leading to unintentional errors that the DWP could prevent with better communication and support systems.

    The DWP: undermining our very social fabric

    The DWP’s decision to recover overpayments from carers is not only morally questionable but also an inefficient approach to managing public funds.

    Rather than punishing carers who are already contributing immense value to society, the government should focus on providing clearer guidance and proper financial support.

    At the very least, the system should be reformed to offer leniency for minor infractions, particularly given the enormous financial and emotional burden many carers already bear. By targeting these unpaid carers, the DWP is not only worsening their hardship but also undermining the very social fabric that relies on their unpaid labor.

    Featured image via the Canary

    By Steve Topple

    This post was originally published on Canary.

  • An ME/CFS charity has just shamed itself again. So why do people still support it?

    One of the biggest UK myalgic encephalomyelitis (ME/CFS) charities Action for ME (AFME) has been promoting a document pushing misinformation based on a notorious harmful psychologising model for treating people living with the devastating disease.

    However, it’s unsurprising when you learn where – and more specifically, who – the document came from.

    Action for ME

    On 13 August, AFME posted a link to download a so-called ‘Care and Support Plan template’ for people living with ME/CFS.

    In a news post on its website, it originally stated that:

    People living with ME/CFS have worked with Dr Pete Gladwell, Clinical Specialist Physiotherapist and North Bristol NHS Trust’s Bristol M.E. Service Lead to develop a Care and Support Plan template with input from Action for M.E.

    However, it quickly came under fire from people in the ME community – and for good reason. This is because it was riddled with false and misleading information on the chronic illness.

    So, members of an ME forum took action. They wrote an open letter to AFME. In this, they highlighted a number of issues with the document. You can read the full open letter here.

    For one, they noted how the 24-page document wasn’t even what AFME claimed it to be. That is, it wasn’t actually a care plan in any real sense of the term. Crucially, they highlighted how contrary to advice from the official 2021 guidelines from the National Institute of Health and Care Excellence (NICE), the supposed care plan doesn’t involve input from clinicians at all.

    In other words, the lengthy document pushes the onus on the patient to detail their care needs. But this wasn’t the only – nor worst place – where the document flouted the NICE guidelines. In some parts, S4ME argued the purported care plan would actively harm people living with ME.

    Misunderstanding and misinformation

    Most prominently, the document displayed a shocking misunderstanding of the hallmark feature of ME/CFS.

    Post-exertional malaise (PEM) entails a disproportionate worsening of other symptoms after even minimal physical, social, or mental activities.

    But crucially, this is from cumulative exertion, and is a delayed response. As S4ME pointed out, it’s not simply the immediate onset of symptoms after exertion. Instead, it’s the result of people with ME going over their limit, as S4ME explained in their letter:

    The effects of a single activity and/or the cumulative effects of multiple exertions over hours, a day or longer may take the pwME over their limit, and result in PEM.

    PEM has specific features including a delay of 12 hours or more, typically a duration of longer than a day, sometimes much longer, a significant increase in the pwME’s regular symptoms with additional symptoms, and a significant reduction in the capacity to function. PEM is not a few hours of fatigue, as this document suggests.

    Given its conflation of PEM with fatigue, it’s perhaps not surprising that the document makes another appalling error.

    The so-called care plan stated that:

    Baselines change over time and for some people – but not everyone – they can be slowly increased by consistently undertaking an activity. Baselines will also need to be adjusted during a setback in the M.E.

    This is veritable nonsense on a number of levels – and as S4ME noted here again, contradicts the NICE guidelines. Ostensibly, the forum members argued that this amounted to the Graded Exercise Therapy (GET)-lite approach of “pacing up”.

    This was where the role of a certain physiotherapist and board member of an infamous organisation fomenting the psychologisation of ME came into sharp relief.

    The BACME board member and physiotherapist behind it

    ‘Bristol M.E. Service’ lead Peter Gladwell compiled the AFME-supported care and support plan. He’s also a board member of the British Association of Clinicians in ME/CFS (BACME).

    The Canary has previously pointed out how the organisation has:

    a contentious history in upholding a harmful status quo.

    Notably, we highlighted that:

    the organisation was the machination of notorious members of a lobby of medical professionals hell-bent on psychologising the chronic systemic disease. Members of the ME community sometimes refer to them as the “biopsychosocial” or “psych” lobby.

    Specifically, at its outset, professor Esther Crawley chaired the group. Crawley has a prolific record of endorsing treatments geared towards a psychosomatic basis for the disease. These include graded exercise therapy (GET) and cognitive behaviour therapy (CBT).

    In 2021, NICE updated its guidelines to downgrade CBT, and remove GET as a treatment altogether. And while Gladwell himself has publicly distanced himself from GET, his record suggests he practices otherwise.

    His new care plan’s ostensible “pacing up” focus is a case and point. Significantly, the document references AFME’s controversial pacing guide for this. Who wrote it? None other than Gladwell himself.

    The Canary has also previously unpacked some of the enormous issues around this guide. In particular, it details gradually increasing activity “following the establishment of a sustainable baseline”. Moreover, it gives an example of this, stating:

    If you decide to extend an activity, do this by up to 10% and no more. For example, if you can currently manage walking for 10 minutes, try increasing it to 11 minutes

    Yet this distinctly flies in the face of the new NICE guidelines. We wrote that:

    Firstly, these advise that people living with ME should reduce their physical activity “to be below their baseline level”. Vitally, it briefs that they should only attempt increases that stay within their “energy limits”. By contrast, ‘pacing up’ suggests a GET-lite increase of 10% straight off the bat.

    What’s more, if that wasn’t problematic enough, the document doubles down on defending this approach. We explained how:

    the document goes to great length to demonstrate how ‘pacing up’ isn’t GET. Ultimately however, it splits hairs over the underpinning theory. As such, it fails to acknowledge that it too involves increasing activity beyond a patient’s energy envelope.

    In a condition where post exertional malaise (PEM) – a disproportionate worsening of other symptoms after even minimal physical, social, or mental activities is the hallmark symptom, this is clearly a prospectively highly harmful approach.

    Gladwell’s GET-lite ‘pacing up’ approach

    When all is said and done, the key issue here is that Gladwell’s GET-lite “pacing up” approach is actively harmful to people with ME/CFS.

    In fact, the impact is plain to see. Crucially, we detailed how Gladwell has likely put this strategy into practice at his Bristol service. We wrote that:

    Patients of the clinic responded to a 2019 survey that #MEAction conducted on the state of ME services across the UK. The Bristol-based service garnered the largest number of respondents, with 76 of its patients taking part in the survey.

    Two results stood out. Just 13 – 17% – of Bristol service users said that attending the clinic had helped them. Meanwhile, 27 – 35% – said they saw no change to their condition. The larger remaining 34 participants – nearly 45% – stated that their experience at the service had in fact made them worse.

    Alongside this, a separate question identified the type of treatment the service prescribed patients. On this, the largest proportion of respondents – 28, or nearly 37% – said that the clinic encouraged them to:

    first find a sustainable level of daily activities, and then to increase my activities week by week

    Naturally, this chimes with Gladwell’s “pacing up” approach.

    Of course, this is also salient given how Gladwell used input from patients at the service to develop the care plan. As S4ME noted, these are likely to be newly diagnosed people living with mild ME. Crucially, it expressed how:

    People who are neither experienced in managing an illness nor educated about the nature of evidence may be especially vulnerable to misinformation and manipulation. They need charities like AfME to advise and advocate for them, not to collude with Peter Gladwell in misusing their goodwill to perpetuate his own ideas about ME/CFS.

    Not the first time, likely not the last

    Ultimately, the whole saga shows how out-of-touch AFME STILL is with the chronic illness and people living with it. Action for ME CEO Sonya Chowdhury responded to the open letter. She apologised for the document, and announced the charity would remove it from AFME’s website.

    She also detailed that AFME is in the process of reviewing its resources to ensure they comply with the 2021 NICE guideline. In other words, the charity is aware some of its guides perpetuate the abuse of ME/CFS patients. Nearly three years on, it hasn’t removed these – including Gladwell’s pacing guide. Worse still, it’s publishing more by him, knowing full well the harm his approach has had on people living with ME.

    And while the forum welcomed Chowdhury’s apology and decision, the ME community shouldn’t have had to fight a charity claiming to represent them in the first place.

    Crucially, this is hardly an isolated incident where AFME and the major UK ME charities are concerned in general. One person on X compared AFME’s swift response to the ME Association digging its heels over concerns S4ME raised on a project the charity is funding:

    Unsurprisingly, Gladwell is co-leading this. As the Canary highlighted at the time, the ME Association broadly dismissed these concerns. What’s more, it doubled down in backing one of the researchers after she unleashed a torrent of gaslighting and abuse at S4ME members raising valid criticisms of the project.

    Action for ME: still in bed with BACME

    As such, Action for ME’s response hardly signals an end to this debacle either. AFME might have removed the care plan, but this underpinning pacing ‘guide’ from Gladwell is still floating around on its website.

    Most notably, Chowdhury and AFME stopped short of cutting ties with Gladwell. In its letter, S4ME argued that AFME’s relationship with the BACME board member and Bristol clinic lead invariably led to this whole issue. They stated that:

    ME organisations should be campaigning for a new model of NICE-compliant clinics, which are led by a doctor, are supported by specialist nurses, and cater for all severity levels including the most severe. While clinics continue to be led by therapists steeped in old, ineffective, potentially harmful models of care who have little or no real understanding of ME/CFS, we will continue to be subject to inappropriate resources such as this.

    And this perfectly underscores the problem. AFME remains wedded to just such clinicians espousing the same old biopsychosocial ideas wrapped up in shiny new terms to give the surface-level appearance of NICE guidelines compliance. In reality, these ideas – as S4ME demonstrated – are palpably not.

    After AFME published its response, one forum member aptly summed this up:

    What we now need to hear is that AFME full stop finish ‘their reliance’ on Peter Gladwell, the North Bristol Clinic, and most definitely BACME. Those orgs/individuals must in future be nowhere near ME guidelines, projects etc. The idea of slowly slowly educating BACME is just fantasy – we don’t have any more time for that.

    That the UK’s largest ME/CFS charities maintain a relationship with BACME and its clinical members is an absolute scandal. That it takes money from people with ME while doing this, is a disgusting affront to all those living with the devastating disease.

    However it’s hardly surprising after over a decade of the charity’s gaslighting and abuse of people living with ME, and its long history of complicity in cosying up with the psychiatric lobby.

    The S4ME letter signed off stating:

    AFME can and should do better.

    Given all that, this is generous to say the least.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • Iain Duncan Smith’s notorious DWP think tank already lobbying Labour government

    Notorious dark money think tank the Centre for Social Justice (CSJ) – founded by former head of the Department for Work and Pensions (DWP) Iain Duncan-Smith – is at its old lobbying tricks again. Now of course, it has turned its main attention towards Labour as the new party in power.

    Notably, just weeks ahead of the Labour Party conference, it has launched two new reports bursting with recommendations for the new government to take up. Alongside them, the CSJ has also kicked the rightwing corporate media machine into gear to seed these ideas in the public consciousness.

    As usual, these promote a panoply of policy ideas for punching down on chronically ill and disabled people. The worrying part is, there are signs the Labour government is already listening.

    CSJ and Labour: Times touts the ‘evil of worklessness’

    1 September 2024 marked the end of the summer parliamentary recess. So naturally, just as the new Labour government gears up to begin the business of parliament, the Sunday Times threw down the gauntlet – and at the same time, chronically ill and disabled people under the bus.

    Its headline blared that:

    Sir Keir Starmer must confront the crisis of idle Britain

    Cue an incorrigible article packed full of demonising tropes and benefit claimant-bashing rhetoric. Spiralling rates of people out of work to long-term sickness and burgeoning benefit claims? People have simply lost “the habit of work”.

    That’s according to former Times and Sunday Times editor Martin Ivens who penned the offending piece for the right-wing rag. Throughout, Iven’s espoused what he describes as the “evil of worklessness”.

    More disgustingly still, it seemed to tap into a recent astonishingly vile Telegraph comment article. This blamed chronically ill and disabled people for the recent race riots. In fact, Iven’s article and this previous hit-piece had a lot of anti-welfare buzzwords and phrases in common. Both decry the so-called “long-tail of worklessness” and call for a “carrot” conditionality approach to benefits.

    Most significantly though, Iven’s also bandied about the idea that at least 700,000 long-term sick people:

    say they want to go back to work given the right encouragement.

    If it seems that Iven’s pulled the figure out of his arse, that’s because he largely did. It’s based on a calculation by the CSJ using a DWP survey of just 2,012 claimants of various benefits. This found that 20% of respondents:

    did have a desire to work and thought they could work at some point in the future

    Using this, the CSJ extrapolated it outwards to the number of claimants which fall in the ‘No Work Requirements’ group for benefits. Of course, it’s likely the majority of long-term sick people want to work. However, this doesn’t mean they can. Crucially, the survey didn’t seem to make this distinction in its interpretation of the responses. Notably, the survey question actually framed the answer as:

    I am currently unable to work, but might be able to in the future if my health condition/ disability improves

    This is quite different from saying that these respondents felt they “could work at some point in the future”. Crucially, this is because it leaves out the major caveat of “if my health condition/ disability improves”. So for one, the 700,000 figure is based on a survey of a tiny proportion of claimants. Moreover, it also makes assumptions from this poorly interpreted multiple choice answer.

    Contrary to Iven’s 700,000 people on benefits saying they want to go back to work then, just 400 said they might, if their health improves, in a miniscule DWP survey.

    The CSJ’s corporate media mouthpieces

    However, if the disparaging and ableist message and misinformation in the articles wasn’t bad enough – when you dig down to where it originated, it gets distinctly worse. Specifically, it’s here that the sinister influence of the CSJ comes into play.

    Notably, if Iven’s article reads almost like a cut and paste job from a carefully-curated CSJ press release – there’s a reason for that. Because he has in fact lifted paragraphs almost verbatim from the two freshly published CSJ reports he refers to.

    It might constitute plagiarism if it weren’t for one simple fact. That is, what the Times article doesn’t disclose is Iven’s significant conflict of interest. Because, it just so happens he’s also chair of the Centre for Social Justice’s (CSJ) so-called Social Justice Commission. And this is the organisation behind the reports.

    This was of course, founded by Iain Duncan-Smith in 2004. Since then, the think-tank has shaped Conservative welfare policy and was the mastermind behind Universal Credit.

    In fact, the CSJ has repeatedly proudly boasted its role as architect Universal Credit and unleashing its devastating effects on benefit claimants. For the CSJ, Universal Credit is its headline success story, and it isn’t shy about pronouncing it. Naturally, it typically skirts over the literal hundreds of thousands the DWP have denied it to in its forced migration process over to the new-style benefit – meaning they’ve entirely lost their vital social security. Tens of thousands of Universal Credit-related deaths? Funnily enough, not something you’ll read about in a CSJ report either

    And Iven’s CSJ puff piece is characteristic of the blurred lines and revolving door between the right-wing corporate media and the CSJ.

    Separately, a 31 August article in the Telegraph also touched on elements of these reports. Primarily, the piece focuses on Sunak’s national service publicity stunt – which the CSJ report calls for. However, it also dredges up the so-described “economically inactive” population, also underscored in the reports. Of course, these are just the latest examples of the corporate media shilling for the dark money think tank.

    The CSJ and corporate press have long held a cosy relationship. A quick search reveals hundreds of articles stretching back from its inception laundering the findings of repeated CSJ report after CSJ report.

    But crucially, the two latest articles shilling for the CSJ reference the pair of new reports the think-tank has published this September. The main report offers 50 recommendations for the new Labour government. These cover policy ideas in multiple areas across work, housing, crime, education, and family. Predictably, it has put tackling so-called “health related economic inactivity” as one of the priorities under its work umbrella.

    Just in time for Labour’s annual conference

    Naturally, the CSJ appears to have perfectly timed their publication to coincide with conference season. Of course, in all likelihood, it did this deliberately.

    For one, it’s probable the CSJ will feature these ideas heavily in its own fringe programme at the Labour Party conference. Until 2 September, the CSJ was advertising its attendance at this. The Canary had sight of the page, but the CSJ has since taken it down. However, it’s still possible to see that this did exist on Google search results.

    Google search result showing that the CSJ did have a page listing for its attendance at the upcoming Labour Party conference.

    Page cannot be found for the URL that hosted the CSJ's page for the upcoming Labour Party conference.

    It appeared largely as a holding page hosting limited information on the CSJ’s location on each day at the event. What’s more, it didn’t display information on the CSJ’s programme at the conference. Theoretically it would later update this closer to the conference date. Unfortunately, the Canary doesn’t have a screenshot of the page and it hasn’t been archived.

    It may well be the case that it will post a new page for this before the party conference commences, with additional details. Alternatively, it’s possible that it’s seeking to minimise scrutiny of its presence and programme at the upcoming lobby-fest. And the very reason could be its publication of these new reports.

    But the CSJ has already been angling to influence a potential rightwing Labour government on welfare.

    In January 2023, the CSJ hosted Jonathan Ashworth – then in his role as shadow secretary for the DWP to:

    discuss Labour’s strategy for welfare reform and economic inactivity

    Of course, it also wouldn’t be the CSJ’s first Labour Party conference rodeo either. In 2023, the CSJ had Ashworth back again, then as shadow paymaster general to deliver a keynote speaker on, of all things:

    what social justice would look like in a new Labour government

    Needless to say, an independent MP opposing a literal genocide booting him out at the election was not likely part of his vision.

    Also co-leading the keynote was Telegraph editor and GB News presenter Camilla Tominey. In an April 2024 article, Tominey regurgitated the CSJ’s persistent obsession about work being “good for” people off to long-term sickness. Notably, she even namechecked CSJ CEO Andy Cook in her tirade on economically inactive people. Largely though, it was a love letter to the right’s “lazy” scrounger narrative, with Tominey’s incongruous view that Sunak’s administration:

    fostered a culture in which some people still expect to receive something for nothing

    Obviously, this spoke volumes for Tominey’s brand of supposed ‘social justice’. Ironically, while she proclaimed Starmer’s Labour as “air-fried socialism”, his shadow DWP cabinet was right in step with Tominey’s anti-welfare rhetoric all along. Naturally, this is more apparent than ever now Labour has taken power.

    Embedding itself in the DWP

    While Ashworth is out of the picture, the CSJ has embedded itself into the new Labour government’s DWP through an unlikely minister.

    Labour appointed Stephen Timms as minister of state for social security and disability. However, Timms is also a commissioner on the CSJ’s Social Justice Commission. Again, this is the organisation behind the CSJ’s two latest reports.

    Of course, many in the chronically ill and disabled community welcomed Timm’s appointment as de facto disability minister. Given his history of allyship, it’s therefore likely Timms is in the commission to push for the CSJ’s more progressive proposals.

    Nevertheless, it’s arguable that Timm’s role on the commission loans its entire agenda legitimacy, even if he himself endorses only the better ideas it puts forward. This is evident in the Telegraph article, where it highlighted him as a commissioner behind the reports. Essentially, it implies his support for the national service guff the Telegraph piece sets out.

    It’s also true that so far, Timms hasn’t exactly proven the ally in government disabled people had hoped for, given his voting record and work as chair of the Commons work and pensions select committee. Despite consistently calling for greater transparency at the DWP while Labour were in opposition, now it’s tumbleweed from Timms. Notably, this is just as his department appeals a transparency ruling by the information commissioner. Specifically, this concerns the department’s internal investigations into deaths linked to the DWP’s own actions – something which Timms himself lambasted the previous government for withholding.

    Now, his role with the CSJ brings his commitment to chronically ill and disabled people further into question.

    Labour CSJ donors and lobbyist MPs

    However, these aren’t the only alarm bells signalling the new Labour government’s tight relationship with the CSJ. Millionaire pro-Israel venture capitalist Stuart Roden donated over half a million to Labour for its election campaign. Most notably, he sits on the board of the CSJ.

    Meanwhile, amongst the Party’s large pool of lobbyists standing for election in July, four worked for private corporate consultancy firm Hanbury Strategy. This included Hanbury director Chris Ward. Ward replaced leftwing MP Lloyd Russell-Moyles after Labour deselected and blocked him from standing as a candidate. In 2021, Ward was Starmer’s deputy chief of staff, after a six year stint as his staffer. Two of the four candidates with roles at Hanbury, including Ward, were elected in July.

    But in the last year, Hanbury has also lobbied for the CSJ. This included the period up to 31 May 2024 – the most recent lobbying register that’s available. At this point, all four candidates were active employees.

    In 2022, Hanbury launched its dedicated Labour Unit at the party’s annual conference, which it declared was to:

    help clients engage with the opposition and prepare for the possibility of a Labour government.

    Ward led this unit, and fellow previous Labour staffer Joe Morris worked alongside him until his recent election.

    Red rosette Tories

    Of course, the CSJ’s and its corporate media lapdogs have successfully entrenched “economic inactivity” as a pretext for punching down on chronically ill and disabled people across the Labour right.

    DWP boss Liz Kendall is already at it, spouting at a Jobcentre in Leeds days after election that:

    rising levels of economic inactivity are unacceptable and that immediate action must be taken.

    Infamously callous former DWP boss IDS may have fired the anti-welfare starting gun with the CSJ, but a Tory in red rosette will finish the think-tank’s work. And needless to say, there’ll likely be nothing socially just about it.

    Feature image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • Paralympics under fire for #EveryBodyMoves campaign – that EXCLUDES millions of disabled people

    Sally Callow is the founder of campaigning social enterprise ME Foggy Dog which raises funds for a chronic illness. Currently, she is on a mission about the Paralympic Games. This is because, believe it or not, the British Paralympic Association (Paralympics GB) has made one of its own campaigns inaccessible to over four million disabled people.

    Callow has penned an open letter to the Paralympics GB. You can sign it here. Part of it says:

    I wish to address a matter of significant concern regarding your #EveryBodyMoves campaign, which I believe warrants urgent attention and rectification.

    But what is #EveryBodyMoves?

    #EveryBodyMoves for the Paralympics

    As Channel 4 wrote, it:

    has teamed up with ParalympicsGB to launch a major, on-air campaign to encourage disabled people across the UK to take up a sport… [that] will drive viewers to the Every Body Moves initiative – a project run by ParalympicsGB to match disabled people with a local sports club.

    [Channel 4 will] highlight the initiative through an onscreen QR code that, when scanned on a smartphone links directly to sports clubs in a viewer’s local area. As the QR code appears, there will also be studio discussions about the project and features profiling the work and participants.

    On the Every Body Moves portal, users can tap in their postcode and the site will show a range of inclusive sports and activities.

    I thought I’d tap the QR code to see if I could match my disabled partner Nicola with a “local sports club”. I tapped the “physical impairment” option (as that was the nearest one to what Nicola lives with) and everything was physical sport. Broaden the search away from just “physical impairment”, and seated exercise classes came up, over one mile from where we live.

    Sadly, even this wouldn’t be suitable for Nicola. And she certainly couldn’t compete in anything at the Paralympics. Why?

    As Callow wrote:

    While the campaign’s intention to encourage physical activity and promote inclusivity is commendable, it unfortunately overlooks a critical reality: there are a large number of disabled people who are physically unable to engage in exercise or physical activity due to the nature of their disabilities.

    For these individuals, the campaign’s message can be both exclusionary and inadvertently stigmatising.

    Callow is right, and this applies to Nicola – because she lives with several chronic illnesses which would be classes as ELCs.

    Energy-limiting conditions

    Energy-limiting conditions (ELCs) refer to a group of chronic illnesses that significantly reduce a person’s ability to carry out daily activities due to overwhelming and persistent fatigue. This fatigue is not merely tiredness that can be remedied by rest; it is profound, disabling, and can be exacerbated by physical or mental exertion. Unlike the normal fatigue that everyone experiences after a long day or a strenuous workout, the fatigue associated with ELCs does not improve with rest and can worsen after even minor activities.

    For many with ELCs, the physical limitations are among the most challenging aspects. Simple activities such as showering, cooking, or walking can become physically debilitating tasks. The unpredictability of energy levels from day to day makes it difficult for individuals to plan or engage in regular activities, contributing to a loss of independence.

    Several chronic illnesses are categorized as ELCs, with myalgic encephalomyelitis (ME/CFS) being one of the most well-known. It is a very severe condition, that in some cases can kill, and often leaves people house-or bedbound. Energy limitation is not the most major symptom in ME/CFS, though. This is post-exertional malaise (PEM) – which is a severe worsening of many/all of the person’s other symptoms after any kind of exertion – be that physical, mental, or emotional.

    Other ELCs are the Ehlers-Danlos syndromes (EDS) – genetic, hereditary connective tissue disorders, which again in some cases can kill. Multiple sclerosis is another, and so is long Covid. Overall, over four million people (if not more) live with ELCs in the UK. They’d be highly unlikely to say that #EveryBodyMoves. Yet the British Paralympic Association seems to believe that’s true.

    Chronically ill people excluded from the disabled community

    As Callow wrote of Paralympics GB:

    The slogan #EveryBodyMoves, though well-meaning, implies a universality that simply does not exist. It risks reinforcing harmful stereotypes by suggesting that everyone, regardless of their physical condition, should be able to move or exercise. For those whose disabilities prevent them from doing so, this can lead to feelings of inadequacy, frustration, and a sense of being misunderstood or overlooked by the very community that is supposed to represent and support them.

    Of course, chronically ill people being misunderstood or overlooked in the wider disabled community is hardly new.

    Just this year for example, there have been numerous Disabled People’s Organisation (DPO)-led protests and events. However, organisers have often given little or no consideration to accessibility for chronically ill disabled people.

    Livestreaming disabled people’s protests is one such example. It would allow chronically ill, housebound or bedbound people to get involved online. However, this is often not done or even considered – despite chronically ill people bringing the matter up themselves with DPOs.

    Little wonder that this lack of inclusion in the disabled community then extends to the British Paralympic Association.

    Paralympics GB needs to step up (metaphorically)

    Some of it is probably lack of thought from organisers of the event; the exact same problem that disabled people with physical impairments campaigned hard to stop via the Equality Act 2010.

    Part of the problem is probably also that old adage that ‘Oh! Well, you don’t look ill!”. Chronically ill people have historically been excluded from DPOs, sometimes with prejudice, because they’re ‘not disabled enough’.

    However, ultimately it’s an issue of representation. Because there are probably few, if no chronically ill disabled people involved in the British Paralympic Association, then organisers would not even realise they being ableist with #EveryBodyMoves.

    Equality and inclusion for some

    Callow said she wants the British Paralympic Association to include:

    a caveat in your partnership promotional material… acknowledging that while physical activity is beneficial for many, there are individuals with disabilities who are physically unable to engage in such activities.

    It is past time that chronically ill people were given the same accessibility as disabled people with physical impairments. They are one of the most marginalised groups in the UK, and also one of the most stigmatised against.

    It’s telling that the organisation charged with the UK contribution to one of the biggest disabled people’s events on the planet can’t even get its inclusivity right – and it sums up the societal-level problem we have more broadly.

    You can sign Sally Callow’s letter here. 

    Featured image via the Canary

    By Steve Topple

    This post was originally published on Canary.

  • Disabled people stage SIT-IN at parliament as security BLOCK delivery of DWP exposé ‘The Department’

    Disabled people staged a sit-in outside parliament on Monday 2 September. It happened after security denied them entry to the building (which they’d previously been given permission for) to deliver copies of a book which is a damning exposé of the Department for Work and Pensions (DWP).

    The (DWP) Department: not for Portcullis House, clearly

    Representatives from UK Coalition of Deaf and Disabled People’s Organisations were originally at Portcullis House to deliver copies of John Pring’s damning DWP book The Department. Despite previously arranging this with parliament they were told by security that they would not be allowed to enter as books are not allowed to be distributed within the parliamentary estate.

    This is however not what the activists were there to do. They only intended to deliver the books to Labour Party MPs, which had been pre-arranged. They were then going to move onto an event focusing on DWP disability benefit cuts inside Portcullis House, which had also been booked and approved.

    After trying to resolve the issue with security the activists had no choice but to stage a sit in outside Portcullis House.

    ‘We’re just gonna sit here, then’

    Paula Peters of DPAC announced in the pouring rain:

    They wont let us in, so we’re gonna sit here. This is your building. Lets take the entrances until this is sorted out.

    This is disabled people’s response to the denial of our democratic rights. Disabled people are now having a sit in outside Portcullis House.

    Upon being told that they would have to post the books individually, something they were assured Parliament would do, activists stacked them outside the entrance of Portcullis house. The Canary is now hearing that Police are trying to remove bags and boxes containing all 650 books from the entrance.

    DWP

    DWP and disability activists chanted “no more deaths from benefit cuts” as police tried to move them on:

    Inclusion London tweeted:

    No access for Disabled people who had legitimately booked a meeting room in Parliament? About deaths linked to government actions? Not allowed to bring books we’d had permission to bring. No access for anyone, then, we suppose.

    Activists were originally there to deliver 650 copies of The Department, after raising over £7,000 to be able to send each Labour MP a copy of the book. This is in the hope that the new Labour government will take notice of disabled people and not allow more of us to die under the DWP’s watch.

    The books were all individually addressed to Labour MPs in black envelopes. Organisers were told prior to today that books would need to be scanned but that could be done at Portcullis House. But today they were told the opposite.

    An event on the DWP and benefit-related deaths, trauma, and injuries was supposed to follow the delivery. This would’ve been a vital event for MPs.

    Instead the group were joined on the pavement outside Portcullis House by some MPs who were sympathetic to the cause.

    A dialogue over the DWP that didn’t even happen

    The event was to be an open meeting with disabled activists, family members of those who died due to benefits, cuts and those who almost died. MPs were invited to attend the meeting, which was due to be hosted by Coronation Street actor and activist Cherylee Houston.

    Houston told the Canary:

    I’m astounded that something that has been prearranged with security to deliver John Pring’s book, yet now we’re sat outside Portcullis House being refused entrance.

    We’re trying to have a dialogue with the government about the devastating and life threatening impact further cuts will have on disabled people. And they’re not even letting disabled people into a building that had been prearranged.

    Activist and former EastEnders actor Lisa Hammond was also there at parliament. She told the Canary:

    We are here to deliver John Pring’s book to all the MPs today here at Portcullis House. They are now not allowing us to do this despite it being pre-arranged and organised. We are not moving until we can get this issue resolved.

    Lisa Hammond and Cherylee Houston holding a copy of The Department by John Pring

    Róisín from Disability Rights UK told the Canary:

    Whilst hundreds of Disabled people have died at the hands of the DWP, they have done everything in their power to invisibilise us and hide their complicity. We are currently sitting here, Disabled activists and family members of those who died as a result of benefits sanctions, with Parliament refusing to even let us in to deliver this damning evidence of DWP-sanctioned deaths of Disabled people. After over a decade of austerity, Governmental contempt for Disabled and marginalised people comes as little surprise – but at each step the blows continues to harm our communities more. We will continue to resist the systems that deem Disabled lives as disposable.

    The group of over 30 people were warned by police that arrests would be made if they didn’t move, but this wasn’t followed through:

    Disabled activist Paula Peters talking to a cop outside Portcullis House

    Instead as bags of books were blocking the doors to Portcullis House, security arranged for a van to collect the DWP-related books.

    The event, which was again pre-approved with booked room, has since been cancelled by parliament.

    Featured image and additional images supplied

    By Rachel Charlton-Dailey

    This post was originally published on Canary.

  • Could a major DWP PIP change mean Labour is about to follow through on Tory reforms?

    In September, the Department for Work and Pensions (DWP) will roll its suite of functional health assessments into one. Specifically, this means that DWP contractors will look at claims for Personal Independence Payment (PIP), as well as the health-based component of Universal Credit and Employment and Support Allowance (ESA) through one singular assessment. While the move in isolation isn’t specifically a cause for concern, what it signals might well be. That’s because previous Tory governments planned to use it as a pretext setting the stage for other harmful DWP reforms. In particular, this involves its plans to scrap the Work Capability Assessment (WCA). Significantly, to date, the new Labour government has failed to rule out these reforms.

    DWP PIP: change coming in September

    On 29 August, the Independent reported on a key change the DWP is set to make to disability benefit assessments in September. It wrote that:

    The change will see all benefits that require a functional health assessment rolled into a ‘single assessment’ as part of the DWP’s Health Transformation programme. This means PIP assessments, as well as Work Capability Assessments for ESA and Universal Credit, will all be assessed in the same way and at the same time.

    Purportedly, the government is doing this to:

    create a seamless customer experience. By improving how we gather evidence and by enabling the re-use of information, the new integrated service will provide DWP agents and Healthcare Professionals with easier access to relevant information. This will reduce the burden on customers to provide complex information and reduce the need for them to provide it more than once.

    However, this is not the only reason – nor likely the main one. The Tory-led DWP set this in motion as part of its broader plans to reform the WCA and PIP. In particular, rolling these assessments together was a stage of its goal to scrap the WCA entirely.

    Crucially though, this was set to deny hundreds of thousands of chronically ill and disabled claimants their vital benefits. This is because, as policy adviser Ken Butler at Disability Rights UK told the Disability News Service (DNS):

    The health element proposals will mean that around 632,000 disabled people who receive the employment and support allowance or universal credit support component will lose this as they do not receive PIP or DLA.

    Specifically, as the Canary’s Steve Topple detailed, this will most likely impact chronically ill people and those living with mental health conditions. He explained that the reason for this is that many of these people:

    do not fit into PIP’s rigid criteria box.

    Notorious private contractors crop up again

    Now, under the new Labour government, the DWP is commencing this initial step as originally planned. Specifically, the Tory-led DWP had intended to initiate this when new assessment providers took over the contracts this year.

    As the Independent reported, this includes:

    • Scotland and North England: Maximus UK Services Limited (currently Atos)
    • Midlands and Wales: Capita Business Services (currently Capita)
    • South West England: Serco (currently Atos)
    • South East England, London and East Anglia: Ingeus UK Limited (currently Atos)
    • Northern Ireland: Capita Business Services (currently Capita)

    Naturally, many of these companies have taken over from disgraced DWP PIP contractor Atos. However, as the Canary has also pointed out before, these private outsourcing firms are also notorious – and not in a good way either. Crucially, the likes of Serco and Maximus have a long history of harm towards asylum seekers, chronically ill, and disabled people.

    In Maximus’s case, it has overseen some of the government’s WCAs. As we previously underscored however it has done so to sometimes fatal effect, including running the process leading to the deaths of multiple people.

    On top of this, Serco, Maximus, and Ingeus have all run a key government back to work programme. Not only have they failed to meet low government-set targets, but they’ve also harmed chronically ill people in the process.

    A sign of Labour’s plans for DWP PIP and the WCA?

    Despite calls from disability rights campaigners for the new government to ditch the Tories’ plans, Labour has yet to signal it will indeed do this. To the contrary, it has in fact somewhat rebutted their efforts to challenge the former government’s reforms.

    Significantly, as the Disability New Service (DNS) revealed, government lawyers are still planning to appeal the information commissioners order to release the previous government’s assessment on its plans to do away with the WCA. Therefore, as the DNS noted:

    This could add to fears that the new government has no plans to scrap Conservative work and pensions policies such as abolishing the WCA, tightening the assessment in the short term, or reforming personal independent payment.

    So while the DWP shunting the functional health assessments into one this September was always part of the department’s plan, it might also indicate the new Labour government will stick to – at least some of – the Tories’ dangerous reforms for the WCA. In particular, its plan to scrap it altogether.

    Topple also pointed out how the then Tory government might use this to push chronically ill people into work. Critically, he wrote that:

    there are now over 360,000 more people who are chronically ill and not working than before the coronavirus (Covid-19) pandemic. The government classes these people as “economically inactive”. It’s currently on a drive to get some of the nine million people who are economically inactive into work.

    Given this, he suggested that:

    So, by removing the WCA and just relying on PIP entitlement, the DWP will be able to strip some of these economically inactive people of their entitlements. This will leave many with little choice but to try and work.

    Of course, this rhetoric now neatly aligns with DWP PIP boss Liz Kendall’s back to work agenda. Early on post-election, Kendall also raised the 2.8 million “economically inactive” people off work due to long-term sickness.

    In other words, the seemingly innocuous DWP PIP and WCA change could be a sign of dangerous reforms yet to come under Labour.

    Feature image via Youtube- the Times and Sunday Times/the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • Tanni Grey-Thompson’s transport nightmare is a waking reality for most disabled people

    On Monday night Tanni Grey-Thompson had to do something she’s unfortunately accustomed to now – crawl off a train. She had the same experience 12 year ago, too.

    Tanni Grey-Thompson’s experience is the norm

    The paralympian who uses a wheelchair had once again been abandoned by passenger assistance and after waiting 15 minutes on an empty train after 10pm in London. She had no other choice but to take matters into her own hands – literally.

    Yesterday morning, after listening to Grey-Thompson recant her experience on Radio 4, baroness Sal Brinton tweeted about how she’d also had this experience, but she also made an interesting point.

    Brinton said:

    If the new Labour Government wants more disabled people in work… then barriers to getting to work (getting on and off trains, lifts working, priority on buses, recognising PIP helps with additional costs only faced by disabled people) must be addressed.

    Brinton as usual is spot on here. If this government is as intent on forcing disabled people back to work as the last, they have to actually invest in making sure we can physically get to work.

    Barely accessible: the UK’s transport network

    Tanni Grey-Thompson is far from the only wheelchair user this happens to. Many regularly tweet their frustration using the hashtag #DisabledByTheRailway that they’ve been left on trains, not been able to get on them due to ramps, or abused by other passengers who were using the wheelchair space for luggage storage.

    From travelling with wheelchair-using friends I’ve witnessed rage from other passengers who’ve tried to push onto trains first, and flippant train staff. On the flipside I’ve also seen the kindness of strangers who’ve had to help us off tubes we were told had level boarding.

    And that’s just wheelchair users. As someone who regularly uses buses and trains I have to sacrifice my energy by using a cane instead of a walker as there’s more chance I’ll be able to board and have a space without jostling with mothers and prams.

    And of course there’s only one mobility aid space on most buses, meaning that only one disabled person gets to travel at once. Because nobody who’s disabled could possibly have friends, family, or partners who are also disabled.

    On my local buses the dedicated pushchair space has been replaced with extra seating so now parents have to share the space with wheelchair users. While wheelchair users are supposed to have priority many just refuse to move and drivers don’t advocate for disabled passengers.

    And that shouldn’t be a decision disabled people or indeed parents should have to make. We all deserve to be able to get to where we want to go. But when services deprioritise disabled people we all lose.

    Labour must take seriously disabled people’s transport woes

    I’m lucky to be able to work from home. But I’ve heard countless stories from people who’ve missed important meetings, been unable to get to their jobs, or even been sanctioned by the DWP because they couldn’t get on a bus, nobody arrived to help them on the train, the lift was out at the station or it didn’t even have one, or they were given wrong or unsafe support from staff who were adequately trained.

    Brinton also pointed out that PIP enables a lot of people to pay for the extra things they need to get to work. For me, the fallback of PIP enables me to only work the amount of hours I know won’t leave me exhausted and in too much pain. How are vouchers going to help support me in that way?

    In all the flurry of getting back to work panic, there’s also been nothing on how they’ll tackle the two-year-plus Access to Work backlog. Many are risking losing job offers or putting themselves through more pain whilst the support they were promised doesn’t materialise. There’s also no mention of training employers on how best to support disabled people. That and the fact that disabled people earn six times less than non-disabled people.

    Stop the ‘scrounger’ narrative

    There’s so much more that needs to be done to actually support disabled people into work than just job coaches and threatening to cut their benefits.

    One thing’s for sure, if Labour continues to allow the scrounger narrative to spread and plough ahead with cruel welfare reforms, without support disabled people will be forced into jobs that could kill them.

    If Labour are actually passionate about supporting disabled people back into work and not just using us as a welfare scapegoat they’ll actually invest in physically getting us there.

    Featured image via the Canary

    By Rachel Charlton-Dailey

    This post was originally published on Canary.

  • DWP denied thousands of people PIP back-payments – make sure you’re not one of them

    The Department for Work and Pensions (DWP) could potentially owe hundreds of thousands of personal independence payment (PIP) claimants thousands in back-payments.

    This is thanks to a high court ruling from 2019. Specifically, it found that the DWP should have awarded many disabled claimants the higher rate of PIP. Notably, the court ruling will particularly affect people claiming PIP with mental health conditions – who it has wrongly denied greater disability benefits.

    The department is currently in the process of contacting claimants about this potential entitlement. However, already, the DWP has denied this enhanced rate to the majority of claimants – and without claimants taking action, this could be the case for many more.

    DWP PIP back-payments

    The DWP divides PIP into two separate parts. These are the ‘daily living’ component, and the ‘mobility’ component. Crucially, the 2019 court ruling means that the DWP should have awarded claimants the higher rate for the daily living component of PIP.

    As the Big Issue has previously detailed:

    The ruling was made following a challenge by a PIP claimant, a 47-year-old man known as MM. It concerned the definition of “social support” when engaging with other people face to face.

    The Supreme Court ordered the DWP to clearly define what counts as support and not dismiss the help that many people with mental health problems need in social situations.

    Specifically, it means that the department is reviewing hundreds of thousands of cases dating back to 2016. As the Mirror reported, claimants who the DWP may owe this back-dated enhanced rate include:

    • People who have regular meetings with a mental health professional, without which they would not be able to manage face-to-face encounters
    • People who need the input of particular friends or relatives with experience of supporting them in social situations – rather than just any well-meaning friend or relative – to help them manage face-to-face encounters

    The DWP didn’t start looking at claimants’ PIP until late 2021 – two years after the ruling. Since then, it has been reviewing these. But, by 31 August 2023, it had done so for 79,000 claimants – less than 20% of cases it had identified.

    DWP denying the higher rate to most claimants

    Crucially, despite the fact the ruling means that the department has to review over 400,000 claimants’ benefits, this doesn’t mean it will award all these claimants back-dated pay. Notably, the DWP has so far denied this higher rate to the majority of claimants it has reviewed.

    Its most recent progress report in October 2023 showed that:

    • It had reviewed 79,000 cases.
    • Out of these, it had awarded just 14,000 – under 18% – the higher rate and made back-payments.
    • In total, it has paid out £74m to these claimants. This would amount to around £5,285 per claimant, but the DWP owed some less, and others more than this.

    Most of the claimants the DWP had denied the uprating to hadn’t challenged its decision. Just 390 people had applied for a mandatory reconsideration of the DWP’s review for their cases. Significantly however, as a result, the DWP had to award 100 claimants – over 25% of these – the higher rate of PIP. It meant the department paid out £420,000 to these claimants.

    In other words, the DWP had wrongly denied the higher rate back-payments to a significant proportion of claimants. Naturally, it’s likely to be the case for many other claimants it has dismissed in this review so far too.

    DWP could owe 284,000 more people money

    On top of this, the DWP isn’t automatically reviewing all claimants that could be entitled to the enhanced payment.

    In particular, this applies to people affected by the “timing” element of the court’s judgement. The judge stated that:

    In short, I do not consider that descriptor 9c is limited to cases where a claimant needs social support actually during the face to face engagement

    This refers to the ruling’s decision that claimants needn’t have social support at the time of a DWP’s assessment to qualify for the higher rate benefits. Former Tory DWP minister Tom Pursglove said in a statement to parliament in October that 284,000 people could be entitled to higher rate PIP because of this.

    Instead of reviewing these cases, he said that the DWP will send letters out to these claimants. This letter would encourage them to contact the DWP about this.

    Of course, it likely means many more could lose out. This is because the DWP has a notoriously long wait times for its telephone contact lines. Obviously, this makes it hugely inaccessible to chronically ill and disabled claimants. Notably, as the Canary previously reported, its in-house lines had failed to field a third of calls in 2023-2024.

    However, given the high rates of awards after mandatory reconsiderations, claimants the DWP has rejected at review should this follow up. The DWP could owe many it has so far denied enhanced PIP to thousands in back-dated payments.

    Feature image via Youtube – Tracey Media/the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • Putting work coaches in mental health services will only lead to more disabled deaths

    Can’t work due to bad mental health? You’re a selfish scrounger with no self respect according to the NHS director of mental health Claire Murdoch in the Times On Friday, the Times published a piece lauding the government’s new DWP plan to tackle the supposed ‘worklessness crisis’ by putting work coaches in mental health services.

    Not only will this put more pressure on an already struggling NHS (which the government regularly blames disabled people for), but it will also mean anyone seeking support for mental health issues will be forced to focus on getting a job.

    Work coaches in NHS mental health services

    The Times explained that mental health services will be stocked with teams of employment advisors offering everything from help with CVs to mock interviews. Because when you want to die due to the mounting fear of having your benefits cut, you actually don’t need a therapist – you need someone to show you how to format a CV.

    The most perverse thing about the article is the jovial attitude and use of words like ‘offer” which make it seem like this will in any way be a choice. There’s of course no mention of what will happen if disabled people turn down this “offer”.

    With the government refusing to remove conditionality from the welfare equation you can only assume that benefits will be dependent on whether patients ‘engage’ with these new work coaches in the same way the current system does.

    The article also focused on how services help those who have been unemployed for a long time and seek mental health services have been supported into work. But it doesn’t address the reality that many can’t work and that schemes like this will force them into jobs that could cause their conditions to deteriorate and their mental health to worsen.

    Work is NOT a health outcome

    So you’d think that mental health practitioners would be against this right? Lol, here’s what Claire Murdoch, director of mental health at NHS England, had to say:

    As the NHS, we want to help people find work or keep work. The NHS can, should and does think of itself as a contributor to economic growth.

    She continued, by making disabled people feel like a burden:

    The NHS is really clear that work is good for you. It’s a way of making a contribution, putting food on your table, being connected to something bigger than just yourself or your own life.

    Oh but it got much worse. She finished with:

    Work is part of self-respect and self-worth, using your talents, and having structure and meaning to a day.

    Nothing instills confidence in those struggling with their mental health like being told by the people running the services that are supposed to help you that they have no self-respect.

    As consultant clinical psychologist and activist Dr Jay Watts put it best on Twitter:

    Er no. The NHS can, should and does think of itself as a contributor to health.

    Dr Watts continued

    Mental health staff have a moral duty to reject any ‘health as work’ agenda involving the DWP. DWP sanctions take away respect and the means to survive; integration destroys trust. Fear of DWP policies is so intense, it drives people to starvation. Informed consent is impossible.

    The DWP: infecting the NHS with work coaches

    The scheme won’t mean disabled people are supported into work. It will instead mean that less disabled people who desperately need these services will be more reluctant to access these services for fear of having their benefits cut.

    It will mean that those deemed ‘difficult” whilst having very real mental health crises will be marked as ‘not engaging’ and not only will they lose support, but they’ll also – you guessed it – have their benefits cut.

    There’s a lot of talk about Britain’s mental health crisis, but it’s too often through the lens of getting people back into work. If the government is actually committed to helping people with mental health issues it needs to stop seeing us as cogs in a machine and instead as people who are worthy of support.

    It’s dangerous to put DWP responsibilities on the NHS, as those two things should never be put together. Unfortunately, it has been going on for years – and the new Labour government appears hell-bent on ramping NHS-DWP integration up.

    But more than anything, it shows how blatantly callous the government is. They care more about work than they ever will about disabled people.

    So far I see no “change” from the last lot.

    Featured image via the Canary

    By Rachel Charlton-Dailey

    This post was originally published on Canary.

  • EXCLUSIVE: DWP just gave £1 BILLION MORE to private companies for harmful back-to-work scheme

    Not only did the Department for Work and Pensions (DWP) hand a harmful “back to work” contract extension to notorious private outsourcing company Serco, but it also awarded it to seven other controversial suppliers. Significantly, these companies have mostly been operating the government’s key Universal Credit work programme – the Restart Scheme – since 2021.

    However, to date the scheme has failed to help most participants into long-term work. Worse yet, it has harmed chronically ill people the DWP has forced onto the programme. Despite this, the department has awarded the same eight failing suppliers a total of over £1bn over the next two years.

    DWP: Serco and other private sector profiteers

    The Canary previously reported that the DWP had awarded a £175m contract extension to infamous private contractor Serco. Specifically, it did so for the firm to continue operating the department’s mandatory Universal Credit work programme – the Restart Scheme. We wrote that:

    In a nutshell, the DWP is contracting private sector providers to host twelve-month tailored employment support packages for certain benefit claimants. The DWP makes this a mandatory requirement for some claimants to participate in to receive their benefits. And notably, it can sanction those that do not comply with the scheme.

    Since June 2021, a slate of private firms, including other notorious names like Maximus and G4S, have run the scheme in different areas across England and Wales. Serco won the contracts for both the West Central region, and Wales. It was originally for three years. Now, the DWP is continuing the scheme for two further years, and has extended Serco’s contract for these areas.

    Now, the government has officially published the contracts for this extension. The DWP posted these on the government’s ‘contracts finder’ portal. However, it has redacted much of the information throughout the documents. As such, they provide just one figure: the ‘Anticipated Contract Value’.

    Notably, this isn’t the amount the DWP will pay the suppliers solely for the new extension. Instead, it’s the total value of the contracts to date, including this additional award. In other words, it’s an estimate of the full value the DWP will have paid each contractor by the close of the scheme. As such, it also factors in what the DWP has paid each supplier up to this point.

    Yet while the government’s newly published contracts doesn’t disclose the amount it’s funnelling to these companies for the extension contracts, its public tender service does.

    As a result, the Canary identified that the DWP is paying the eight private outsourcing companies the following:

    Underperforming for killer profits

    In total then, it means the DWP is paying these eight private sector companies over £1bn. This is on top of the more than £1.5bn it has already awarded to them before the extension.

    Crucially, the department is throwing this new gargantuan sum at these companies after their repeated failures to date. Notably, we previously highlighted how these firms weren’t hitting performance targets set by the DWP.

    Specifically, these set out the number of Universal Credit participants providers should help into sustained work – its so-called ‘job outcome’. It defines this as achieving the equivalent of 16 hours for 26 weeks at the National Living Wage. In 2022, it reviewed these targets, setting the ‘Minimum Performance Target (MPT)’ at 27% of participants.

    But, we identified that these companies hadn’t come near to meeting the bare minimum target threshold. Of the 610,000 people who have started the scheme to date, just 142,700 – 23% – of people have achieved the DWP’s ‘job outcome’. This means that the scheme has still failed to help 77% – more than three-quarters – of participants into a job paying the legal minimum wage.

    Now, the new Universal Credit contracts show that the DWP is setting the MPT for the next two years at 28% – just 1% above its previous base target. In other words, it’s STILL asking suppliers to help less than a third of scheme participants into work – but paying it exorbitant sums for it.

    More tellingly, the DWP has redacted information on the stretch goal – the Tender Performance Target (TPT) – from the new contracts. In particular, the DWP bases the TPT on:

    what providers claimed they could achieve in their bids for the contracts.

    In other words, here, the contracts would show what each company has pitched it can deliver. By obscuring these, the government has currently hidden what these companies are promising to the DWP. Previously, it set the TPT at a low 36% of participants getting into long-term work during or after the scheme. Given these private contractors have fallen far short of this measly target to date, it’d be surprising if the redacted figures revealed anything remotely more ambitious.

    Largely though, as the Canary pointed out before, the data on this is mostly inconsequential. This is because it doesn’t factor in the percentage of participants who would have entered long-term “sustained work” without the scheme’s help. In that way, the DWP provides no way of knowing how helpful the scheme actually is to people. Nevertheless, the department’s own estimates for the scheme suggested this would be pitifully low – just six in every 100 participants.

    Moreover, the DWP centres its so-called job outcomes on the government’s paltry National Living Wage. We highlighted that this falls well short of the real living wage – in other words – the true cost of living.

    Overall, Restart revolves around the premise that work is always a positive outcome. Exploitative employers paying poverty wages shows that this isn’t necessarily the case. But this wasn’t the only challenge to this misguided narrative either. The Canary also found that Restart had harmed chronically ill participants. Specifically, forcing people into work had actually made their health worse.

    Private companies with a history of harm

    Of course, while the Canary previously honed in on Serco since the company announced its new contract, the Universal Credit Restart Scheme failures apply to all these corporations as a whole. In short, all eight private outsourcing companies are underperforming on government targets. All eight are putting chronically ill participants at risk.

    Again however, this should come as no surprise. That’s because many of these profiteering corporations’ reputation precedes them.

    Like Serco, Maximus has long had its claws in the DWP. If its name rings (alarm) bells, that’s because it should. For one, Maximus was the infamous company behind the 2017 Work Capability Assessment ‘Kill Yourself’ scandal. This was where the benefit assessor had been asking claimants why they hadn’t taken their own lives.

    But its record didn’t get better from there. Crucially, Maximus has overseen the process for many vulnerable claimants – and sometimes to fatal effect. Notably, this includes the claimant deaths of Alan McArdle, Jodey Whiting, and more recently, Philip Pakree.

    However, despite repeated failures and scandal, the DWP just keeps flogging the company new contracts. Currently, aside from its Universal Credit Restart Scheme extension, it holds five active contracts with the department.

    Similarly, Seetec has had a long and torrid history with the DWP. In 2014, a disabled campaigner described a Seetec-run DWP work programme as having a “sanction first, ask questions later” approach to claimants. While a provider for the programme, Seetec had referred more claimants for sanctions than any other company. Unsurprisingly, this scheme too utterly failed disabled claimants.

    Granted, this Seetec scandal is from over a decade ago, but do profiteering corporate capitalists ever really change their stripes? More damning testimony from participants of a back-to-work scheme in Ireland suggests not really. As the Canary reported in 2019:

    A research group based at the Waterford Institute of Technology (WIT) recently gave evidence to a government committee about its investigations into the scheme…They described JobPath as “a system that actively and capriciously patronises, cajoles, threatens, manipulates and, at times, bullies”.

    Now, the glaring discrimination against chronically ill people and Restart’s dire results only evidence this all the more.

    Putting chronically ill and disabled people at risk for profits

    Then, there’s G4S. The firm has profiteered off of multiple arms of the UK’s carceral infrastructure – from immigration detention to the criminal justice system. In each instance, the company has been dogged by rap-sheet of scandal. From a violent and racist culture of abuse at its Brook House detention centre, to fines for multiple counts of fraud, it seems like a company the DWP shouldn’t touch with a barge pole.

    However, this is not the case. Right now, G4S has two further active contracts for services with the department. Currently the company is also embroiled in ongoing labour action with its Jobcentre security staff. The profiteering company’s exploitative labour practices for these employees has led to strike action and resulting Jobcentre closures. Consequently, as the Canary pointed out – once again, it’s claimants that suffer from this.

    In reality though, none of these scandal-hit private sector opportunists should be anywhere near welfare services. Repeated allegations, failures, and continued claimant harm should be reason enough the DWP ends this perpetual privatisation fiasco. However, with ardent neoliberal capitalist Liz Kendall at the helm, it’s not probable.

    Ultimately, Restart’s aims sit neatly with Labour’s back-to-work agenda. So far, the new Labour-led DWP has given little reason to believe the abuse of chronically ill and disabled claimants is going to change. Now, the DWP putting the same slate of failing, profiteering firms behind the wheel shows that this is only too likely the case.

    Feature image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • The Week in Ableist Bullsh*t: don’t worry, disabled TODDLERS are fair game to right-wing rags too

    The new Labour Party government might be in summer recess, but there’s no time like the present for throwing disabled people under the bus.

    It’s summer recess – but don’t let that stop you

    Keir and his pals might be on their summer holibobs, but since they conveniently forgot to throw out the previous lot’s vile and frankly abusive plans for disabled people before they went, they’ve been left to fester like the mould in JK Rowling’s castle.

    The prevailing theory on why Labour didn’t immediately cancel all plans for tougher work capability criterion and of course the infamous PIP vouchers consultation is because they will be going along with it. So, as is usually the case in the run-up to the Autumn Budget, the seeds of disability scrounger hatred are being sown so nobody feels bad for us when we have our vital benefits cut.

    In amongst other truly incredible headlines such as the Telegraph blaming disabled people for the riots and the Daily Mail making their front page about workshy DWP scroungers from seemingly the opinion of one unnamed Tory, the British media decided to take aim at disabled kids – because they’re apparently fair game too

    The Telegraph decided that making vulnerable disabled people the enemy wasn’t enough, they had to go one disgusting step further and try to turn people against disabled children. Of course not all disabled children though, no these aren’t the super bubbly inspo-porn brand of disabled kiddies we see on Children in Need – I’m of course talking about the ones with lying benefit-scrounger parents.

    Scrounging kids getting tax-free benefits to spend on fags and booze

    Figures released early this week showed that a record number of children received Disability Living Allowance. The Telegraph pointed out this was tax-free because I forgot kids pay taxes.

    Of course, the Torygraph’s take on this was that kids are being over-diagnosed with ADHD and autism so that their scrounger parents can claim for them.

    Despite linking the two and putting the main total of 730,000 kids with DLA – much, much further down, the article itself explains that less than half of claims (337,000) were for “neurodevelopmental conditions such as autism and Asperger’s syndrome”. They then pulled out that 72,500 kids claimed benefits for “hyperkinetic syndrome – also known as ADHD”, despite making it sound like a separate figure this will have actually gone in with the 337k.

    Along with deliberately using outdated terms to delegitimise the conditions, they were quick to point out that claims for these had risen by a third and a fifth respectively.

    The article claims that many are concerned that if they start receiving support this early it will encourage them to always stay on benefits and not work – because the children clearly yearn for the mines, and accessible jobs of course are in abundance.

    Or maybe, just maybe, support now means they will grow up with a support system and be helped throughout education and into a career that suits them. Or if they can’t work be supported regardless, because our right to live shouldn’t be determined by how much money we make for the economy.

    A something-for-nothing culture in pre-schools, apparently

    More infuriatingly, this wasn’t the only story the Telegraph ran on this.

    They followed it up by attacking toddlers.

    Yes, you read that right.

    This is the shocking news that nearly 30,000 kids under five are receiving support for “severe behavioural disorders” again with the outdated-as-fuck language.

    The article also claims parents only put themselves and their children through awful benefits assessments as it “doubles their benefit income” with the two-child tax credit benefit cap. Because again it’s scrounging parent’s fault and not the fact that the government are happy to let kids starve.

    I first became aware of this when I got a call from a producer at LBC to go on and talk about it, with about an hours notice. I tried to prepare for what I expected would be an “is everyone pretending to have ADHD and autism for benefits” onslaught but nothing could’ve prepared me for what I was actually up against.

    Corporate media running disabled people ragged

    Along with talking me in circles about why everyone deserved benefits who needed them, and constant talk of functioning labels, came the presenter’s baffling assumption that some schools forced diagnoses so that they could get extra funding. Despite no evidence for this, it was presented as fact. He even had the audacity to ask me if it was true. To which I replied the only way I could

    I don’t know and neither do you.

    I came out of this interview feeling absolutely awful, like I’d failed the disabled community.

    But I now realise that I couldn’t have done anything to “win” that, and there lies the problem. As I said on TikTok yesterday, I am sick of being asked on shows and told it won’t be a debate only for presenters to force me to defend disabled people’s right to support, and by extension life. My life and the lives of other disabled people shouldn’t be a debate – especially not kids.

    Disabled people: the media want you to be broken

    Despite trying this hard to disparage neurodivergent people for a long time, I think the takeaway should be this quote from the scrounging toddler’s piece

    A government spokesman said:

    We are committed to ensuring parents with children with disabilities are supported fairly.

    Awareness of neurodevelopmental conditions has increased over the past decade with a rise in the numbers of children seeking formal diagnoses reflected in those seeking support.

    This is what we need to be focusing on. Neurodivergent conditions aren’t being over-diagnosed, we just have more awareness of them now.

    The reason kids are getting more support is because they SHOULD be getting this support. As I always say, disabled children will likely grow into disabled adults, and it’s much more preferable that they get a diagnosis and support now than growing up thinking they’re wrong and broken.

    But that’s exactly what the media want.

    Featured image via the Canary

    By Rachel Charlton-Dailey

    This post was originally published on Canary.

  • Phantom healthcare for ‘real’ diseases: when will ME/CFS and long Covid get parity?

    Historically, medicine has had a problem with women, especially those who were not married. Sounds unrealistic? The nineteenth century wasn’t that long ago, and many diagnoses and treatments of physical illnesses were linked to women’s mental and emotional lives. Speculumism, clitoridectomy, and institutionalisation were all instigated because women’s testimonies were regarded as inherently unreliable. Today, medicine still has a problem with young women with severe ME/CFS and long Covid.

    We are at a crisis point in medicine

    We see Maeve Boothby O’Neill, Merryn Crofts, Alice Barrett, Carla Naoum, Karen Gordon, Millie McAnish, and Sophia Mizra all refused life-saving medical treatment because doctors convinced themselves that mental and emotional factors were involved in their ME/CFS, and their physical symptoms and personal accounts were disregarded.

    Yet, the nub of this is if a doctor can’t tell the difference between anorexia & very severe myalgic encephalomyelitis they shouldn’t be in charge of these patients. 

    We are at a crisis point within our society regarding illnesses labelled as ‘medically unexplainable’, nociplastic, functional, or having a mind-body interplay. There is a fault line, a black hole that too many people are falling into, due to the dynamics between personal, systemic, and ideological flaws.

    This is a morass where medicine is lost. Lost because it can’t treat or cure these illnesses. Lost because it can’t explain them. And many young women are paying the cost of this ignorance with their lives.

    The clash we are witnessing on a very human front is the divide between individual responsibility and systemic failure. 

    ME/CFS: the coalface of our medical morass

    Many in the ME/CFS community bore another scar when, last week, the coroner found no one to be to blame for Maeve Boothby O’Neill’s death from malnutrition caused by very severe ME. 

    One reason given was that no medic had a faulty view of ME or denied it was “a true illness”. Another because there was no institutional protocol in place for severe ME, so individual responsibility was excused.  

    Yet, this is the morass. It is practically impossible to find a doctor who will deny to a patient’s face that ME isn’t ‘real’. The get out of jail card is that they claim mental illness is real (which it is) or mental factors that contribute to a physical disease are also real. The problem is that ME isn’t a mental illness or a disease that is driven or sustained by psychological influences. These are the facts the coroner should have recognised.

    For ME, we have an industrial phantom healthcare system in place. It’s rooted in the faith that ME and MUS have mental and emotional driving factors in their etiology.

    There is training in MUS, in behavioural techniques for ME, long Covid, chronic pain.

    There is clinical guidance set by BACME, an organisation that is often closed, inaccessible, and supports outdated, even risky ideas about exercise and rehabilitation.

    There is a whole clinical network for ME and long Covid that seems to take pride in ignoring the NHS ME guidelines, medical investigations, and insisting on behavioural lifestyle interventions. It is changing slowly, with the introduction of the 2021 NICE guidelines, but not nearly fast enough.

    It is a mirage of medicine based on discredited research, ineffective clinics, and clinical guidance, and on beliefs in causal factors that are nothing more than vapours and miasms.

    History repeating itself with long Covid

    Unsurprisingly, it doesn’t work. Patients are not getting better, instead a modern day crisis grows by the hour. There are 400 million globally with Long Covid, two million in the UK. Half meet ME/CFS criteria.

    Medicine, like many humans, seeks a coherent, explainable system. We saw this at its peak with humoral medicine, which lasted for thousands of years and is complete guff. But it made sense of the world in the face of a lot of vast uncertainty. It took doctors until only recently in the grand scheme of things to stop bloodletting. The point of this is that the model in place for many chronic illnesses is coherent in the face of a lot of uncertainty, yet ineffective. 

    This phantom menace is also cheap.

    Giving ME and long Covid patients the care and treatment they need and deserve would be really, really expensive. The BPS got a foothold in the 80s and 90s in the halls of power because it offered a low-cost, explainable, coherent system. Patients were blamed, benefits didn’t have to be given, and no one had to take responsibility for finding an effective treatment.

    We see history repeating itself with the attitude and approach to long Covid: lifestyle interventions, behavioural research, and a useless farce of a clinical structure. Once again, neo–liberalism commodifies people and prioritises the power of money and the preservation of fortunes over people’s needs.

    The human result is that Maeve, Karen, Millie, Carla, and all those faced with ME, long Covid, fibro, Lyme and other ‘MUS’ (this isn’t a polite word in medicine) is a culture of medical silencing, incompetence, failure, and ultimately prejudice. 

    And almost nobody admits to prejudice.

    Doctors aren’t all bad. But they do need to take responsibility

    “Separate but equal” is an apt quote from ‘The Help’. Yet, we know it raises its head when sectioning, safeguarding, and the denial of medical care are even considered. Equal in that mental and physical illness are real but separate, just as ME/CFS, IBS, fibro, chronic pain are seen as separate from diseases with more prestige and medical recognition such as cancer or Parkinson’s.

    Inappropriate safeguarding, sectioning, and denial are tools of violence, subjugation, and silencing. Sounds harsh? There are many families who, when trying to fight for safe medical care for their loved ones, have these institutional forces enacted upon them.

    If these come into play without a doctor possessing a sound medical view of ME or long Covid, then the battle is already lost for the family and great harm can occur. This extra injustice can cause medical trauma and distrust for a lifetime.

    This phantasm’s greatest gift to doctors and those in authority is that it allows them to move the blame away from personal responsibility and onto the system. We saw this in the coroner’s verdict in Maeve’s case. This isn’t the only time that we see this power mechanism in play. We saw it in the banking crisis, where no one part of the machine was responsible.

    The doctors in charge of Maeve’s care aren’t ‘bad’ people. Yet, systemic change also requires individual responsibility, individual conscience. 

    What makes one doctor look at a severe ME patient and understand the immense suffering and want to help, engage and protect that person, and another to deny them life-saving medical care and section them?

    Believe patients

    One answer is quite simple. We need doctors to listen to patients, to believe them. Maeve’s doctors might have thought Maeve’s ME/CFS was ‘real’, but they didn’t believe or listen to her testimony, her mum’s, or other experts to understand how to stop her deteriorating or starving to death.

    At the heart of this dichotomy is medicine’s faith in the harmlessness of rehabilitation, both psychological and physical.

    From the patient’s perspective, lifestyle intervention can be ineffective; trite at best and harmful and woefully disproportionate at worse. Yet medics are reluctant to treat symptoms pharmacologically or even investigate symptoms medically. This is because of the deeply ingrained belief that these types of diseases do not have a fully physical disease process. The patient perceives symptoms because of functional or faulty perceptions in the brain or mental illness. What’s the use of investigating or treating that?

    It’s clear that we need change on personal and systemic levels. If only one wing is flapping, then we have medicine flying in circles, unable to function effectively and safely for patients.

    Doctors can’t change a system overnight but they can change their attitudes and take greater personal responsibility. They can research the science, they can listen to those experts who know.

    Will ME/CFS and long Covid finally see a sea change?

    Patients have sacrificed too much in trying to advocate for safe, life-changing treatment. It is time for medicine and the government to take the baton. Will Labour actually boost ME/CFS and long Covid funding? Will the UK get the moonshot we need?

    Andrew Gwynne MP states:

    My deepest sympathies go out to Maeve’s family. I’m committed to improving the care and support for all those with #ME. We’ll publish a plan which will focus on boosting research, improving attitudes and education & bettering the lives of people with this debilitating disease.

    In the nineteenth century, medicine’s understanding and treatment of many illnesses was delayed by false models of mental, emotional, and physical interaction. We must ensure doctors no longer hold the belief that many illnesses are ‘functional’ and not rooted in organic pathology.

    We need urgent biomedical research funding, quality medical education and a sea change that is based on listening and protecting patients with safe healthcare and clinical practice.

    Featured image via the Canary

    By Claire Every

    This post was originally published on Canary.

  • Grieving for loss of life: the untold ME/CFS – from silent, darkened rooms

    In silent darkened rooms where millions lie, the world turns unaware of profound loss of life. myalgic encephalomyelitis (ME/CFS) is not just a disease. It takes lives.

    While the stories that make the headlines often feature young, beautiful women whose promising lives are cut short, there is a vast ignored population of older sufferers whose lives have been equally devastated for much longer. Their stories too, deserve to be heard and acknowledged.

    ME/CFS is a long-term (chronic), fluctuating, neurological disease that causes symptoms affecting many body systems, more commonly the nervous and immune systems. ME/CFS affects at least 1.2 million people in the UK (likely an underestimate) and at least 65 million people worldwide – if not far more.

    Ruth’s story: a lifetime stolen by ME/CFS

    Ruth will turn 60 next year. As a runner and cyclist with dreams of becoming a marine biologist, her life was irrevocably altered at the age of 14.

    After contracting glandular fever, her future became decades of debilitating illness.

    For 45 years, Ruth has endured the relentless grip of ME/CFS, a fluctuating disease not only widely misunderstood but often dismissed as psychosomatic.

    Her journey through the healthcare system is marked by disbelief, misdiagnosis, and neglect. From being prescribed antidepressants to treatments like graded exercise therapy (GET) and cognitive behavioural therapy (CBT) that worsened her condition, Ruth’s story is the reality of systemic failure of a system that millions of ME/CFS sufferers face.

    In 2018, Ruth’s condition deteriorated to the point where she could no longer sit up or eat, or to tolerate light or sound. Hospitalized, she received no meaningful treatment or advice. Sent home, her plight continued in isolation, a common reality for many with ME/CFS who are forced to endure appalling symptoms alone, away from a medical profession that often gaslights and stigmatises them.

    The contrast: young faces in the media

    The media often gravitates understandably towards stories of young, beautiful women whose lives are suddenly and tragically halted by ME/CFS.

    The striking before-and-after images of vibrant dancers, skiers, and fashionistas transformed into small, grey shapes confined to darkened rooms evoke immediate sympathy and empathy. These narratives are powerful and poignant, and shed light on the severe impact of the disease.

    However, this focus leaves out a significant part of the ME/CFS community: the older women and men who have battled this illness for decades, whose stories are equally heartbreaking but never told. They were once young, vibrant people too, with dreams and aspirations that were crushed by ME/CFS. Their lives should not be diminished in value by age.

    A collective grief

    Ruth is not alone. Her story is typical of the unseen majority who retire to darkened rooms. Most sufferers learn to avoid seeking medical help, having learned first that there is none and second that disbelief and cruelty are often the response to their suffering.

    Decades of terrifying symptoms are borne in apparent silence.

    The energy required to protest or even ask for help is something many sufferers do not have.

    The advent of the internet has provided a valuable platform for shared experiences and hedge treatments. The voices of the voiceless are now there to be read.

    The loss experienced by those with ME/CFS is colossal. Not only do they lose their health, but they also lose the ability to participate in life’s joys and important milestones. Birthdays, weddings, and funerals pass without their presence, replaced by their daily struggle for survival. Families grieve for the lost potential of their loved ones. Alongside the loss of life of the carers who devote time, energy and resources sometimes for decades.

    Ruth lost the children she decided not to have as she was not well enough to look after them. She lost her career in marine biology as she was not well enough to go to university. She lost friends, a husband, and even a sister who eventually said, “I believe you believe you are ill.” This is a profound loss of a life.

    The scandal, not just the medical issue

    This is not just a medical issue; it is a profound scandal. Benefits are often withheld, and those with ME/CFS are left to navigate their debilitating condition with little to no support. Their poverty causes further physical suffering.

    Dr. Nancy Klimas, a renowned expert in the field, says:

    There’s evidence that ME/CFS patients experience a level of disability equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, or patients with multiple sclerosis. The only difference: NO treatment for ME/CFS.

    How much clearer could the need for recognition and action be made?

    Forty-five years after Ruth became ill, and even after a global pandemic highlighted the long-term consequences of viral infections, the architects of neglectful policies are often unchallenged. Even when they wilfully ignore NICE guidelines. Meanwhile, lives continue to be lost in the shadows, as those affected by ME/CFS and now Long COVID endure their lives half-lived.

    The parallels with other public health disasters are striking. Like the Horizon scandal, the contaminated blood scandal, and the Grenfell tragedy, the plight of ME/CFS sufferers is a humanitarian crisis that demands accountability.

    We must take action on ME/CFS

    As we grieve for the lifetimes lost to ME/CFS, action must be taken. It’s time to bring this tragedy into the light, to demand that the medical community, society, and policymakers address the suffering of millions. Only then can we begin to heal the profound wounds inflicted by decades of disbelief and neglect. The loss of life caused by ME/CFS is a tragedy that must no longer be ignored.

    Featured image via the Canary

    By Lisa Catherwood

    This post was originally published on Canary.