Category: Disability

  • Labour MP Kim Leadbeater’s Assisted Dying Bill will have its second reading, and vote, in parliament on 29 November. As the Canary has documented, the campaign in support of the bill is funded by some dubious backers – to the tune of millions. However, chronically ill and disabled people against the Assisted Dying Bill are coming together to voice their opposition, too. Here’s how you can get involved.

    The Assisted Dying Bill: not dead, yet

    As of 11 November, Leadbeater still had not published the text of the Assisted Dying Bill. Therefore, MPs still did not know what they were voting for. On the face of it, the legislation is intended for terminally ill people with less than six months to live. It will ensure that there is oversight of the decisions around a person’s wishes. And safeguards will reportedly be in place.

    As the Canary has previously said, assisted dying is an extremely sensitive, complex, and polarising issue. There surely must be few, if any topics that split the left and right so profoundly. There are course many who want to see it law as a compassionate option for those with terminal diagnosis.

    That’s understandable – to an extent.

    However, as we’ve underscored, that also brings up its own problems where economic burden narratives are concerned. The main problem is though, the buck doesn’t stop at terminally ill people. When you take the Assisted Dying Bill in the context of the corporate capitalist ideology politicians espouse, and the system we all live under, it’s clear this will become a slippery slope.

    A hostile environment for disabled people

    Disability rights activist Paula Peters has been vocal in her opposition to the Assisted Dying Bill. She told the Canary:

    It’s deeply shocking and concerning that MPs still have not had the text to Kim Leadbeater’s Assisted Dying Bill.

    MPs have no idea what they are voting on and very little time to scrutinise such an important bill as this.

    But this bill is deeply worrying when we have the NHS and social care broken and in crisis, hospice care centres closed due to lack of funds, and difficulty in accessing pain management and palliative care support.

    In countries across the world where assisted dying is legal it’s important to highlight to MPs that safeguards have been laxed over time. In Canada for example, assisted suicide under MAID process is the 5th highest cause of death

    After 15 years of austerity where poverty and homelessness are rising, there’s deep concern about disabled people being coerced and pressurised into ending their own lives prematurely. That we will be a burden on the state and too expensive to keep.

    This is terrifying especially in the hostile climate with the government we are under.

    So, campaign group Not Dead Yet has organised a two-pronged campaign.

    Assist us to live

    The action is being supported by other groups like Disabled People Against Cuts (DPAC). Not Dead Yet says people can do the following:

    Write to your MP over the Assisted Dying Bill. 

    “Write to your MP (you can do that here) and explain your concerns about the assisted suicide bill. Individualised emails rather than copy-pasted ones are best, and remember to ask your MP to vote against it.

    “If you don’t want to write your own email, you can copy this one.

    “When you contact them, attach a copy of the briefing paper Not Dead Yet UK has created to explain disabled people’s objections to this becoming law.

    Make a one-minute video.

    “Maybe writing is difficult for you or maybe you just prefer to express yourself differently. There are other ways to share your thoughts: a short video can be a really powerful way to communicate your views.

    “It doesn’t have to be fancy, just use your phone and record yourself talking for up to one minute about why you believe that bringing assisted suicide into law in England and Wales would be a grave mistake.

    “Once you have recorded it (and captioned it if you know how), send it to your MP and send us a copy at contact@NotDeadYetUK.co.uk so we can share it on our social media channels, too”.

    DPAC is doing similar. Paula Peters has created an example video:

    Protest at parliament over the Assisted Dying Bill

    The culmination of this, for now, will be a protest outside parliament on the day of the Assisted Dying Bill’s second reading (Friday 29 November).

    Not Dead Yet has written a blog post. It outlines the core reasons why it opposes the Assisted Dying Bill. The group says these are:

    • Coercion and feelings of being a burden.
    • Inadequate safeguards.
    • The need for better palliative and social care.
    • The role of doctors.
    • A dangerous precedent.

    There will be a slippery slope

    Overall, Leadbeater’s attempt at pushing through her Assisted Dying Bill – assisted suicide in all but name – on the face of it seems well-meaning. Maybe it is. But Leadbeater and others are being incredibly naive – or intentionally obtuse – if they believe this legislation won’t be the start of something similar to MAID in Canada.

    There are apparently still over 100 undecided MPs just in Labour. Meanwhile, Leadbeater herself has admitted she has no “personal connection” to the bill – which raises the question as to why she is in favour of it, and who influenced her decision to table it.

    She also claimed, without evidence, that her Assisted Dying Bill would not “be a slippery slope” to assisted suicide being available to chronically ill and disabled people, and those living with mental health conditions. Yet 54 MPs are already calling for exactly that to happen – including 38 Labour MPs, thirteen of which are in government positions.

    The Assisted Dying Bill must be stopped in its tracks

    Paula told the Canary that:

    We need disabled people and allies to raise concerns about Kim Leadbeater’s bill, why it’s important that we demand a fully funded NHS and social care system, easier access to palliative care and pain management, and publicly funded hospice care.

    We demand the government fix the foundations of our services and assist us to live so that we have autonomy and choice and be in control of our lives

    We urge everyone to contact their MP especially the 100 undecided Labour MPs and oppose this bill.

    Share your story with them and make your voice heard.

    The Assisted Dying Bill is not a done deal – yet. With so many MPs undecided, there is still time to ensure this does not get through parliament. So, record a video, email your MP, and use #AssistUsToLive to make sure everyone knows that this piece of legislation is dangerous – and should not be passed into law.

    Featured image via Not Dead Yet

    By Steve Topple

    This post was originally published on Canary.

  • A young woman, Nevra, who lives with severe myalgic encephalomyelitis (ME/CFS) is issuing an urgent call out for an in-person medically knowledgeable ME ally and advocate. She lives in Pakistan, where hospitals are unable to treat her for her various complex comorbidities.

    However, she’s still seeking medical support from clinicians in Karachi where she can for these. Yet currently, she has no-one in the country she can depend on to take her to vital hospital appointments and advocate for the necessary medical care.

    Until recently, she was also trapped in an abusive household with a family that has actively denied her chronic illnesses and prevented her from getting the help she needs.

    Severe ME/CFS and a constellation of comorbidities in Pakistan

    Nevra Liz Ahmed is a 29-year-old woman from Karachi, Pakistan. She has lived with ME/CFS since the age of six, after an unidentified virus caused her to come down with a high fever. Over the years, it has progressively worsened.

    ME is a chronic systemic neuroimmune disease which affects nearly every system in the body. It 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.

    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.

    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.

    This is what Nevra lives with. However, she also has multiple other devastating conditions impacting her daily. These include:

    • Postural Tachycardia Syndrome (POTS)
    • Hypermobility Spectrum Disorder with Marfanoid features
    • Craniocervical instability (CCI)
    • Mast Cell Activation Syndrome (MCAS)
    • Premenstrual Dysphoric Disorder (PMDD)
    • Gastroparesis
    • Vulvadynia and polycystic ovaries
    • Temporomandibular disorder (TMJ) with an underdeveloped lower jaw
    • Irritable Bowel Syndrome (IBS)
    • Complex post-traumatic stress disorder (CPTSD)
    • Hypertonic pelvic floor
    • Scoliosis
    • Asthma
    • Dyslexia
    • Dysgraphia
    • Intracranial hypertension

    Severe ME/CFS: a life-threatening chronic illness

    Severe ME/CFS can be fatal – and many patients with it also live with a number of these comorbidities which seems to increase this risk. Crucially, medical ignorance, gaps in official clinical guidance, psychologising stigma, and a culture of medical professional arrogance has endangered severe ME patients’ lives, as is currently the case with 24-year-old Carla Naoum in West Middlesex Hospital near London.

    Nevra too has come up against these walls in the medical system in Pakistan. And like Carla, it threatens her life, since she’s unable to even get tests and treatment that could stabilise, let alone improve her conditions.

    She told the Canary that the disease and her comorbid conditions are particularly “poorly understood and treated” in South Asia. There’s been little research into ME in South Asia, but a 2013 study suggested it is hugely underdiagnosed. Obviously, this is over a decade old, but the lack of more recent research implies it’s likely little changed since.

    Deteriorating fast

    On top of this, she has a number of other suspected conditions she has been unable to get diagnosed to date. Endometriosis is one of these, and it has been causing Nevra intense and agonising pain on a daily basis.

    Another suspected condition – Myasthenia Gravis (MG) – a neuromuscular disease that causes muscle weakness is causing intermittent paralysis for hours at a time and is making speech difficult for Nevra. She is experiencing significant breathing difficulties, choking, and problems swallowing, likely due to weakening muscles in her diaphragm.

    The severity of her MG symptoms means that she could require hospitalisation to stabilise her breathing.

    What’s more, Nevra emphasised that her PMDD is severely impacting her. It causes mood changes, severe anxiety, and other cognitive problems. Of course, the PMDD also exacerbates all her other comorbidities as well. Treatments have so far failed to alleviate it. So now, doctors have advised surgical intervention – including a hysterectomy and removal of her ovaries and fallopian tubes.

    Disbelief, denial, and domestic violence

    Despite her worsening condition, Nevra can’t rely on her family to get her to the hospital or support her with her health. In fact, it has been quite the opposite. This is because her family actively denies and dismisses her chronic illnesses.

    Nevra previously told the World ME Alliance that:

    My family doesn’t believe me. My Mum says if I end things, God will punish me more by sending me to hell over and over again. And that is why I’m sick, because God gets angry when I want to give up and makes me worse. My folks won’t help me fundraise either. They claim Allah will send money down from the sky in suitcases and that if I was a true believer I would be patient. I’m terrified that they’re not understanding how fast my ME and PMDD are progressing.

    She showed the Canary some of her exchanges with family members. They had trivialised her chronic health conditions and had been overtly gaslighting her. One told her not to mention Covid and said to her:

    Liz why are all your major signs never showing in tests and always hiding behind symptoms?

    In another, the same family member seemed to imply Nevra was faking her illnesses, stating:

    You don’t need to be seriously sick for people to care for you

    To make matters worse, another family member has been physically and emotionally abusive since Nevra was young. She detailed how his abuse and manipulative behaviour regularly ramps up after hospital stays. Obviously, this has hindered her recovery after surgeries and worsened her severe ME/CFS.

    Her family home was also an unsuitable environment for Nevra due to mould, loud traffic noise and fumes. These caused Nevra to relapse in March after a chest infection.

    She is now living in a hotel away from home to escape the domestic violence.

    Longer-term goals

    As a longer-term goal, Nevra hopes to travel abroad for surgeries she’s unable to get in Pakistan for her various conditions. For instance, she urgently needs surgery for her endometriosis, which has been causing her daily agonising pain and bleeding. However, due to her health worsening – and in particular, intracranial pressure – it’s unsafe for her to travel overseas in anything other than an air ambulance.

    Right now then, her most urgent priority is to get well enough to travel. And currently, she needs the local hospital to run a series of particular tests and offer potential treatment. However, due to her severe ME/CFS and comorbidities, Nevra can’t get to, or enter hospital alone.

    Moreover, as the Canary has consistently documented, hospital settings are dangerous for people living with severe ME. This is due to the noise, light, and other stimuli that trigger PEM and routinely cause severe ME patients to deteriorate. What’s more, it’s also down to the dismissive, and oftentimes abusive attitudes of medical staff that regularly mistreat and psychologise patients living with the condition.

    It’s why she’s issuing an urgent appeal for a medically and ME knowledgeable ally to fly out to Pakistan and support her for a short period.

    Calling for an ME knowledgeable advocate

    Specifically, Nevra is asking for someone who can stay in Pakistan with her for a minimum of two weeks to progress the tests and treatments she needs next.

    She explained that the person would need to:

    be my voice, help me pace, and be with me in hospital, especially as I’m going nonverbal. Keep in touch with ally drs internationally and locally and with you guys. Uber me to tests together and hospital. Help me arrange medical files. Make sure the tests that we need on the list are carried out and my comorbid conditions are always highlighted.

    Additionally, they would also need to:

    read up on my health history, keep all my meds on hand (med list will be provided), check for interactions on my app, and keep referring back to comorbid conditions and make sure the hospital doesn’t do anything without my consent such as psych ward.

    Nevra has been tirelessly fundraising for her various medical needs, and her escape from domestic violence. Thanks to the generous mutual aid of allies all over the world, she told the Canary that she could cover flight expenses, and provide a daily stipend for patient advocacy services. Nevra said she would also fund grocery costs for shared meals, transport, and household supplies, as well as provide accommodation, WiFi, and other basic amenities.

    Since Nevra is mostly non-verbal right now due to the severity of her interacting conditions, an international team of ME/CFS advocates has rallied round her. Largely, the team comprises caring allies – many chronically ill themselves with ME – who’ve stepped up to support Nevra voluntarily.

    Members of the team have said they can provide the advocate with all the information they would need.

    Nevra’s advocacy for the ME/CFS community

    Nevra herself has been an unwavering advocate for members of the ME/CFS community. While living with her worsening conditions, she has given huge amounts of her time and wellness to fellow patients.

    In a letter she penned to an EDS specialist doctor who has championed Nevra’s medical needs, she wrote to him that:

    I really do want to live because a lot of patients and friends are counting on me. They are my chosen family. There is a huge lack of help for SEPTAD patients, both financially and because of a knowledge gap. I am advocating for these patients to get help and I do not want to leave it halfway.

    SEPTAD refers to ME patients who live with a constellation of particular comorbidities, which include EDS, dysautonomia or POTS, MCAS, gastroparesis, neurosurgical conditions like CCI, among others.

    What’s more, Nevra self-taught fluency in multiple languages including English, Turkish, Azeri, Farsi, Urdu, Hindi, Bosnian/Croatian/Serbian, Irish Gaelic, and Greek. She has already used her incredible talent for languages to aid people in the ME community:

    She previously translated award-winning documentary Unrest into several languages to help spread awareness of ME. She wants to continue to use her skills like this, and to support other survivors of domestic abuse living with under-researched and abysmally supported chronic health conditions.

    Nevra emphasised this in her letter as well:

    I have lots of potential as a multilingual translator and patient advocate. I feel like I will have a lot to offer to disabled patients who are also experiencing DV in our community.

    Could you or someone you know help Nevra?

    She told the Canary that her article on the World ME Alliance website barely scratches the surface. She wants to tell her full story – but is currently too sick to do so. So for now, her priority is to get the help she can to treat some of her debilitating conditions.

    She’s afraid that if she doesn’t get this help soon, she could die. Therefore, it’s paramount she finds an advocate who can support her in Pakistan with her next steps as soon as possible.

    If you or someone you know might be able to take on this role for Nevra, please contact her via X, or email me at h.a.sharland@protonmail.com. Or if you can donate to support Nevra’s ongoing medical care and safe accommodation, please find her GoFundMe here.

    Nevra needs this help – and urgently – so she can not only tell her story, but continue to live it, and flourish.

    Featured image supplied

    By Hannah Sharland

    This post was originally published on Canary.

  • How much will you earn between now and the rest of the year? Well if you’re disabled it’s effectively nothing. Thursday 7 November is Disability Pay Gap Day, and due to the disparity in pay compared to non-disabled people, the Trades Union Congress (TUC) says that from today most disabled people will be working for free for the next 54 days.

    Disability Pay Gap Day

    While the Labour Party plows ahead with its plans to force disabled people into work, the union has revealed that disabled people earn on average a staggering £4,300 less a year.

    The TUC’s annual Disability Pay Gap Day report has revealed that non disabled people earn 17.2% more than disabled employees or around £2.35 more an hour. This adds up to on average £82.25 per week for 35 hour workers. This has widened by £700 since just 2022.

    It’s also even worse for disabled women, as usual, who the TUC found earn on average £4.05 less an hour than non-disabled men. That’s £141.75 less a week and over £7,300 less a year than a non-disabled man. 

    More than the weekly shop

    Disabled people are already struggling in the cost of living crisis and we know it costs significantly more to live life at the same standard if you’re disabled, but today the Disability Pay Gap report reveals it’s even harder – because the disparity in wages a week is more than the average weekly shop.

    A food shop for an average household is approximately £63.50, meaning more disabled people will struggle to feed themselves. This is reflected by the fact that the Joseph Rowntree Foundation found last year that 57% of households with a disabled person in them experienced food insecurity and seven in 10 went without essentials. 

    The TUC says that under the last government a toxic combination of lower earnings, the extra costs faced by disabled households and insecure working conditions increased hardship for disabled workers and their families. 

    Oh but wait it gets worse. We’re also more likely to be on zero-hour contracts

    Zero hours lives

    Disabled workers are also more likely to be on despicable zero-hours contracts compared to non-disabled people. And non-white disabled women are three times more likely than non-disabled white men to get stuck on them.

    Zero-hero contracts give awful bosses control over how much employees can earn and can be the only alternative for disabled people who find it harder to get and stay in employment than non-disabled people. Being stuck on low-wage contracts like these mean employees are stuck in a cycle of poverty as they can’t plan for the future. For disabled people, it means they have to work any hours they can despite the effect it will have on their conditions. 

    It also makes employees less likely to challenge unacceptable behaviour by their bosses as they have that threat of not getting shifts that they need to feed themselves. 

    Labour are apparently committed to ending zero-hour contracts, but we will wait and see what they have coming to force disabled people into work. 

    Whilst Labour are determined to force disabled people into work, they’re still showing very little commitment to actually supporting us to get and stay in work that won’t make our lives worse.

    Disability Pay Gap Day is not the only issue

    On top of no commitment to narrowing the pay gap, apart from mandatory pay gap reporting, there’s also still the backlog to Access to Work (AtW) which only getting bigger- that’s if you aren’t having your support cut.

    As Ellen Jones points out, AtW is so bad at the minute that you’re probably better off quitting your job and getting a new one. 

    This is due to AtW focussing on those starting new jobs over those already in work who need support. Ellen points out that the waiting list for freelancers is 38 weeks and for those already in a job it’s 30 weeks, yet we both heard from a mutual friend who was assessed in under a week when starting a new job.

    I suspect this is to both fight the backlog in some way and show their commitment to getting people into work- but it’s not enough to just get us into work, we have to be able to stay there too.

    Labour still committed to forcing disabled people into work

    If Labour are truly committed to getting disabled people into work, instead of using us as a spending scapegoat, they need to show it. And that starts by ensuring we earn a living wage in jobs that we can stay in safely and securely. 

    Featured image the Canary

    By Rachel Charlton-Dailey

    This post was originally published on Canary.

  • Disabled air passengers will benefit from better protections when flying thanks to a new expert group announced on Thursday 7 November by Labour Party transport secretary Louise Haigh at Manchester Airport.

    Disabled air passengers to get new task force

    The new Aviation Accessibility Task and Finish Group will run in partnership between industry and consumers and look at tackling the biggest barriers to air travel for disabled air passengers.

    The taskforce will include presenter Sophie Morgan, co-founder of global disability group Rights on Flights and pioneering campaigner for improved aviation accessibility.

    Sophie Morgan’s advocacy has led the push for more inclusivity within the aviation industry and played a pivotal part in raising awareness of the challenges disabled air passengers face. Sophie’s recent documentary ‘Fight to Fly’ highlighted the unacceptable treatment disabled passengers can often face when flying.

    The taskforce will engage directly with individuals who have first-hand experience of flying with a disability, ensuring the group can act as a platform to advocate for disabled passengers and that consumer voices are at the heart of progress.

    Rights on Flights

    Thanks to the group’s unique partnership bringing consumers and industry together, the taskforce will spend the next nine months reviewing how to tackle problems which impact disabled air passengers’ travel experience and dignity. This could include:

    • Being left onboard aircraft without timely assistance.
    • Poorly handled wheelchairs.
    • Inadequate service.
    • Lack of access to toilet facilities.
    • Limited access to clear information.

    The group is set to meet for the first time later this month and its membership will also include industry representation from Jet2, Virgin Atlantic, Ryanair, BA, travel agent association ABTA, assistance providers as well as London Stansted, East Midlands, Manchester, and Glasgow Airports.

    The group will agree short and long-term practical and achievable actions that can be implemented by the industry, the regulator or the government, and will lead to real improvements for disabled air passengers.

    An important milestone

    Transport secretary Louise Haigh said:

    Everyone has the right to travel with dignity and it is vital we ensure that flying is an accessible, safe and enjoyable experience for all.

    For too long, disabled passengers haven’t had the standard of assistance and service they need. That’s why we are bringing together this expert taskforce to drive forward change.

    Under the leadership of Baroness Grey-Thompson and with accomplished members like Sophie Morgan, this group will help break down barriers and deliver lasting and meaningful improvements to ensure passengers always comes first.

    Sophie Morgan, founder of Rights on Flights, said:

    This is an important milestone in the ongoing fight for rights on flights. For far too long disabled people have suffered when flying and enough is enough.

    By establishing The Aviation Accessibility Task and Finish Group the UK Government has sent a powerful message to the community and airline industry, that change is in the air.

    Rights On Flights said:

    With a new government, we see fresh opportunities for change. The formation of the Task & Finish group, following our discussions on the Assisted Air Travel Act (AATA), is a promising step. This group must remain transparent and accountable, driving progress towards holding airlines and airports responsible. While we welcome this initiative, it’s only the beginning. True change will come through legislative action and enforceable protections. We are committed to ensuring tangible outcomes that lead to greater accessibility and dignity for all travellers.

    Disabled air passengers must be able to travel with respect

    Tanni Grey-Thompson, who has extensive experience in campaigning for and delivering accessibility improvements across all modes of transport, will lead the group which will deliver a series of recommendations and proposed actions to the Transport Secretary next year for disabled air passengers.

    Chair Tanni Grey-Thompson said:

    I am looking forward to working with disabled people, industry experts and the Department for Transport to improve access to flying. It is essential that the rights of each passenger are protected at every aspect of their journey, so they can travel with the respect they deserve.

    As dedicated “Passenger in Chief”, the Transport Secretary is steadfast in her commitment to ensuring that all passengers can experience more inclusive, accessible and seamless journeys. While the industry has made improvements to ensure passengers are treated fairly and with dignity, concerning reports of damaged wheelchairs, poor service and lack of awareness are sadly still occurring.

    Featured image supplied

    By The Canary

    This post was originally published on Canary.

  • The following article is a comment piece from Simone Aspis, project manager for Free Our People Now – a project led by Autistic people and people with Learning Difficulties at Inclusion London

    On Wednesday 6 November, the government announced major reforms of the Mental Health Act.

    The bill focuses on keeping people in psychiatric hospitals against their wishes. We don’t think this bill will stop us from being locked up, abused, tortured, treated inhumanely, and left to die through neglect in psychiatric hospitals.

    Mental Health Act reforms: not good enough

    The new bill will introduce a 28-day limit for detention for Autistic people and people with Learning Difficulties who do not also have a mental health condition.

    But many of us are given another diagnosis or label that means we can still be detained for a long time. Or we are not formally recognised as being Autistic or having Learning Difficulties. We don’t think this will stop us from being locked up.

    Having Statutory Care and Treatment Plans for us will have limited impact if mental health professionals still have the power to lock us up, for years on end, without a release date.

    Increasing numbers of young people are being detained and we face widespread prejudice. It will take more than just involving more patients, families and carers to change this.

    Free Our People Now would welcome a Mental Health Bill that is in line with our UN human rights as Disabled people. This would focus on stopping us being locked up in the first place and keeping us out of psychiatric hospitals for good.

    We need a bill that focuses on giving people with Learning Difficulties and Autistic people the right to the support we need, to live great lives in the community.

    Our Bring People Home From Psychiatric Hospital network has created a list of Government Asks for what we need to see in the Mental Health Bill, to stop us being locked up and help us to thrive in our communities. It has been signed by 27 organisations.

    About Free Our People Now

    Free Our People Now is a project led by Autistic people and people with Learning Difficulties, to get us out of psychiatric hospitals.

    We are a part of Inclusion London, which is a Deaf and Disabled People-led Organisation (DDPO). We support other DDPOs across London and nationally, and campaign for change.

    Featured image via the Canary

    By The Canary

    This post was originally published on Canary.

  • Even as a growing number of organizations offer free or discounted rides to the polls on Election Day, they’re still under-equipped to serve voters with disabilities, particularly those who rely on wheelchairs and other mobility aids. In Georgia, one grassroots organization is working to bridge the gap and ensure that disabled voters are counted. Roll 2 the Polls was started by longtime…

    Source

  • The new Labour Party government has recently launched an NHS public consultation – to mixed responses. The Canary’s Dr Julia Grace Patterson approached it with caution, while some other media outlets have widely derided it. However, as always it’s people who use the NHS the most – chronically ill and disabled people – who have been left with a highly inaccessible process by Labour.

    The NHS public consultation is long and over-bearing, with more than 25 questions. If, like many chronically ill people, you live for example with cognitive impairment, then it may be hard to complete.

    So, the Canary has stepped in to try and make the process easier. It is crucial that some of the most marginalised people’s voices are heard – and heard loudly. You can get involved on social media, too. Share your responses to the NHS public consultation using #ChangeNHSForME.

    The NHS public consultation: not exactly accessible

    Our writer Nicola Jeffery is also a chronically ill and disabled person. She lives with myalgic encephalomyelitis (ME/CFS), Ehlers-Danlos syndrome (EDS), postural orthostatic tachycardia syndrome (PoTS), gastroparesis, dumping syndrome, epilepsy, and craniocervical and atlantoaxial instabilities (CCI and AAI). Quite a mouthful, we know.

    However, she understands the challenges faced by chronically ill people trying to access the NHS. Specifically, this is when the NHS does not properly treat, or even recognise, certain conditions – like many of the ones she lives with.

    So, Nicola has designed a template set of answers to the NHS public consultation from the point of view of several of her own chronic illnesses. You can add or expand on what she’s put – or just copy and paste into the questionnaire. There are several questions you will have to fill out yourself.

    You can access the NHS public consultation here.

    Below are the template answers. At the bottom is a pdf of the full questionnaire. So, you can see what’s needed and where the answers fit in.

    Questions one-nine

    Q1: the answer is up to you.

    Q2: answer each as follows: 1) “The continued privatisation of and selling off of services within the NHS”; 2) “The introduction of assisted dying, which potentially may extend to chronically ill and disabled people, after years of cuts to services”; 3) “The continued psychologisation of chronic illnesses like ME/CFS, EDS, fibromyalgia, long Covid, PoTS, epilepsy, etc”.

    Q3: tick any that apply to you, and then in “other” you could add the following “The complete dismissal of post-viral chronic illnesses like long Covid and ME/CFS, their recognised co-morbidities, and potential support and treatment”.

    Q4: select two, and then in “other” you could add “The implementation of protocols for care and treatment of post viral and other chronic illnesses like long Covid, ME/CFS, EDS, PoTS, avoidant restrictive food intake disorder (ARFID), gastroparesis, chronic Lyme, etc.”.

    Q5: “Improvements regarding delivering care in the community could improve the lives of many people with chronic illnesses or impairments if this was specifically tailored to their needs”.

    Q6: “My concerns regarding delivering more care in the community are that people with chronic illnesses and impairments may have less access to specific tests, treatments, and support that may not be offered to them in this setting”.

    Q7: “Some technologies like upright MRI scanners would be very important diagnostic tools across the NHS”.

    Q8: “My concern with the increased use of technology is that data protection may be compromised along with a loss of human intuition and care”.

    Q9: “An increased focus on prevention to help people stay healthy and independent for long would include a national focus on air quality both inside and out, and national access to thorough yet broad genetic testing to check for chronic illnesses and heritable conditions”.

    Data gathering

    Q10: “My concerns around an increased focus on prevention in the future would be around vaccinations (mandatory or not), which would further harm some patients and also continue the neglect of post-viral illnesses like vaccine-induced long Covid”.

    Q11: this is up to you.

    Q12 – 25: these are NHS data gathering questions, and it is up to you whether you complete them or not.

    Your experience

    The NHS public consultation questionnaire then asks about your experience. We have assumed that most people reading this will be a member of the public, not part of the NHS workforce.

    Q1: you can write your own, but Nicola said “My experience has been years of neglect from the NHS, due to living with post-viral illness and its co-morbidities that are not properly recognised, given any adequate protocols for support, and having no treatment options available under the NHS. This leaves many chronically ill and disabled people with little or no support – other than accusations around a possible psychiatric condition, leading to potential deprivations of liberty or sectionings, and forced treatments that are harmful. This has to change”.

    Your ideas for change

    The NHS public consultation questionnaire then asks for ‘your ideas for change‘. You can construct your own. Nicola did the following:

    Title: “Post-viral and chronic illnesses”.

    Description: “To stop the psychologisation of post-viral and chronic illnesses like ME/CFS, long Covid, chronic Lyme, PoTS, EDS, ARFID – and to make sure they are properly recognised, the patient’s support, and appropriate treatments offered”.

    More detail: “Since well before the part-DWP funded PACE trial, many people living with post-viral conditions like ME/CFS and long Covid have been dismissed and psychologised, along with their symptoms. They have been branded mental health patients. Not only does this cause a huge overload to our already struggling mental health services, but this – along with exercise therapy – have been proven to be harmful to these patients. All this also makes their symptoms worse, further deteriorating their health. These ideologies have not only caused the misunderstanding of post-viral chronic illnesses, but they have perpetuated delays in finding the right treatments for them. They have seriously affected the understanding of ither chronic illnesses like PoTS, gastroparesis, AAI, and CCI. Overall all this has caused years of neglect, misdiagnoses, and mistreatment to countless people living with other chronic illnesses – again, seeing them wrongly diagnosed as mental health patients. This needs to end, now”.

    Support on filling out the NHS public consultation questionnaire

    If you want any further support on filling out the NHS public consultation questionnaire as a chronically ill or disabled person, you can email editors(at)thecanary.co and one of the team will be in touch.

    Then, don’t forget to share with us what you told the NHS. you can post your answers online or create a discussion using #ChangeNHSForME.

    The full questionnaire is below:

    Featured image via UK government

    By The Canary

    This post was originally published on Canary.

  • For anyone seeing Super/Man: the Christopher Reeve Story, which has its UK Cinema release on Friday 1 November, prepare to be inspired and taken on an emotional rollercoaster. But does it show the realities of living with spinal cord injury? For those affected, the jury is out. However, Spinal Injuries Association says the film is stark reminder of the fact that for the 105,000 in the UK living with this cruel impairment, there is still a long way to go in terms of research, care, and treatment.

    Super/Man: the Christopher Reeve Story

    Super/Man: the Christopher Reeve Story is a tale of a movie star, a superhero of the screen, who one day had a freak accident that changed his life forever. His high-level spinal cord injury meant that he was paralysed below the neck, affecting his mobility, breathing, his bowels, bladder, and sexual function.

    Despite this, Christopher Reeve inspired countless others with how he continued to find purpose in the darkest of times as he fought for nine years to improve his condition and that of others until he died suddenly in 2004 of heart failure.

    His family, and in particular his wife Dana, have been described by many as equally heroic, as they provided endless support and care. Dana is credited with rescuing him from the depths of despair when he contemplated suicide following the accident.

    Reaching the depths of despair is something that many of the 105,000 living with spinal cord injury in the UK today have experienced, according to Spinal Injuries Association.

    The public’s perception of this life changing injury is little understood and is seen by many as defined by one word ‘paralysis’, yet those who live with spinal cord injury can live the life of their choosing despite the many barriers that they have to overcome just to manage their condition on a daily basis and many do.

    There are barriers

    However, as well as paralysis, those with spinal cord injury face a multitude of medical complications, including nerve damage, chronic pain, respiratory issues, and loss of bladder, bowel, and sexual function.

    Faced with such changes to their body, as well as isolation and loneliness, strained relationships, and lack of accessibility, many would have had the same thoughts as Christopher Reeve about ending it all. Spinal Injuries Association’s latest What Matters? report shows that nearly 70% of respondents had experienced mental health problems and 39% faced suicidal ideation following injury.

    According to Spinal Injuries Association, more and more people with spinal cord injury are facing a health and social care crisis due to the lack of specialist care available outside of the spinal centres.

    So, at the point that Christopher Reeve was pushing himself to find a cure, many were unable to access the right wheelchair, the benefits they needed or the specialist healthcare.

    Mixed opinions on Christopher Reeve’s approach to spinal cord injury

    Some of this has led to criticism by the disabled community about his focus on cure. Ella Beaumont, who worked as a researcher on Super/Man: The Christopher Reeve story and who was born with a spinal cord injury, said:

    I think the stem cell research was amazing because he changed a lot for spinal cord injury in that sense. But I think he spent, in my opinion, the last few years of his life just pushing his body so much because he wanted to walk again and with such a high level of injury, was that realistic?

    I don’t really think so. In that sense, it sometimes also gave people false hope because they saw that Christopher Reeve was aiming to walk again, so why can’t they aim to walk again? When realistically, was that going to be possible at that time?

    When you’re always striving to have what you don’t have, sometimes that implies to me that you’ve not accepted what you’ve got currently.

    Director Ian Bonhôte and producer Peter Ettedgui have a different take on Christopher Reeve’s actions, viewing his pursuit for a cure as heroic. Peter said:

    I read a paper that someone had written when we were just doing the research where basically they cast him as the ultimate all time villain. On a visceral level I couldn’t understand it because if you do suffer a horrific accident your first instinct is how do I recover from this? So of course you can understand that in his own life.

    But what is for sure is that he realised that he wasn’t just doing it for himself but for all the others in the US in a similar situation. To help make those advances available to people for the greater good.

    Ian added:

    Take his breathing, anything that meant he was able to breathe unassisted would have made a huge change to him and his family, to the costs involved and also some more privacy with his family without round the clock carers. My own opinion is that he may have shortened his life because he pushed himself too much. To find a solution he actually sacrificed himself. Is not that making him even more of a hero?

    Christopher Reeve spinal cord injury

    His work ‘benefitted the community’

    Martin Hibbert sustained a spinal cord injury in the Manchester Arena bombing and has since dedicated himself to disability advocacy, even climbing Kilimanjaro to show what is possible.

    After watching the film, he said:

    What’s striking about the film is its refusal to gloss over the realities of life after a spinal cord injury. Reeve’s story touches on everything from navigating relationships and family to confronting the physical pain and limitations he endured daily.

    The film doesn’t paint over these experiences with unrealistic optimism but instead shows how Reeve found purpose in working for the betterment of others in the spinal cord injury community. His work ultimately paved the way for significant advancements in rehabilitation, research, and awareness that have since benefited countless people.

    Spinal cord injury: a lasting legacy

    This is why the support that Spinal Injuries Association and all charities supporting people with spinal cord injury are more important than ever.

    Spinal Research, who has links with the Christopher and Dana Reeve Foundation, are at that forefront of research. Increased awareness about the potential year’s developments into the treatment of spinal cord injury are giving people hope that we will see ground breaking changes that can transform lives.

    But it is also important to support people in the UK living with spinal cord injury today to live the life of their choosing right now and support them to overcome the many barriers that are stopping them from achieving that.

    Featured image and additional images supplied

    By The Canary

    This post was originally published on Canary.

  • Chancellor Rachel Reeves has now confirmed in the Autumn Budget that the Labour Party government plan to follow through on dangerous DWP reforms set out by the former Conservative government. This concerns the Department for Work and Pensions (DWP) Work Capability Assessment (WCA) – which will strip nearly half a million claimants of their health-related benefits.

    Reeves made a brief reference to this in her Autumn budget speech on 30 October to the House of Commons. She said:

    First, we inherited the last government’s plans to reform the Work Capability Assessment.

    We will deliver those savings as part of fundamental reforms to the health and disability benefits system that the Work and Pensions Secretary (Liz Kendall) will bring forward.

    Of course, it means more harm is on its way for chronically ill and disabled claimants.

    DWP WCA reforms: Autumn budget confirms it

    Reeves’ was referring to the Tories planned reforms to the DWP WCA (Work Capability Assessment). It relates to which claimants will fall into the limited capability for work (LCW), and the limited capability for work related activity (LCWRA) groups of Universal Credit.

    A recent article in the Financial Times had previously suggested that the Labour government was planning to plough ahead with these reforms.

    It ran a consultation on these between September and October 2023. As the Canary’s Steve Topple previously detailed:

    the DWP is planning to change the WCA. Specifically, it’s planning on taking out or changing the following features:

    • Factoring in people’s mobility.
      Bladder or bowel incontinence.
    • The inability to cope in social situations.
      People’s ability to leave their homes.
    • Work being a risk to claimants or others – a clause which means that an individual is “treated as having limited capability for work and work related activity“

    In November, the then Tory-run DWP responded to the consultation. Notably, it laid out how it would proceed with a number of these. Specifically, it decided to take forward DWP WCA changes to:

    • Work being a risk to claimants. Specifically, it will tighten the criteria for this. Notably, it stated that: “We will specify the circumstances, and physical and mental health conditions, for which LCWRA Substantial Risk should apply.” In other words, the DWP will decide who this will apply to going forward – and will obviously move the goalposts.
    • People’s mobility – which it’s removing as a descriptor altogether.
    • People’s ability to leave their homes – which it will now reduce the points for in the assessment.

    Particularly with the last two, the DWP essentially decided that they should instead have to work from home. In both cases, it claimed it would “protect” people who this would harm. However, again, it’s the DWP that will decide who that is. That means to say, assessors with a history of denying benefits to people that need them, and linked to benefit-related deaths, will have the say on this in practice.

    So, Labour is now going to follow through on all this. Of course, it’s all part of its broader plans to coerce chronically ill and disabled people into work.

    Stripping hundreds of thousands of benefits

    However, it will implementing these DWP WCA (Work Capability Assessment) reforms in the full knowledge of its harmful impact. Specifically, these changes will mean that the DWP will strip health-related benefits from over 450,000 people.

    For each change, the DWP’s own figures showed a breakdown of just how many people would lose out due to DWP WCA changes. As Big Issue previously reported, this was:

    • 163,000 for tightening the criteria on work as a risk to claimants.
    • 260,000 for removing the mobility descriptor.
    • 33,000 for changing the points awarded for people’s ability to leave their homes.

    Specifically, this applies to new DWP WCA-related claimants, or those who’ve had to reapply for them.

    So, it means that hundreds of thousands of people will miss out on health-related benefits when it puts these changes in place.

    And contrary to Reeves’ big-talk about helping people back into work, this won’t actually do that.

    This is because the Office for Budget Responsibility (OBR) has said these would mean just 5,100, 8,800, and 1,500 more people finding work respectively as a result of these changes. In other words, out of 457,000 people the DWP would deny benefits, just over 15,000 of those would actually likely move into work. What’s more, this says nothing of the mental and physical health impacts it will have on people – either in losing their benefits, or being forced into employment.

    The cost: chronically ill and disabled people’s lives – again

    On top of this, as the Canary pointed out before, the DWP WCA changes are also another galling U-turn, because:

    At the Labour Party conference in 2023, then shadow minister for disabled people Vicky Foxcroft had told the Disability News Service (DNS) that it would not follow through on these. Of course, this was before Labour’s top brass snubbed Foxcroft for the role of disability minister. Instead, it installed her as a whip. In other words, it both sidelined her in the DWP, and curtailed her ability to hold its ministers to account in Parliament.

    It shouldn’t be a surprise at this point that the Labour government is punching down on chronically ill and disabled people in its ideological love affair with austerity.

    The Financial Times had suggested this would ‘save’ the government £1.3bn. It hardly shouts significant cost-savings. And of course, this says nothing of the true cost of its callous continuity-Tory benefit-bashing bent.

    The fact is, DWP WCA changes will put chronically ill and disabled people’s lives at risk – and after over a decade of benefit-related deaths – the DWP WCA reforms are an unconscionable cost these communities can ill-afford.

    Featured image via BBC iPlayer – screengrab

    By Hannah Sharland

    This post was originally published on Canary.

  • There’s a lot of fear among disabled people on DWP benefits like PIP at the moment and much of it is very warranted. With the Autumn Budget coming up and the government focusing on “working people”, many disabled people who can’t work are worried about what this will mean for their vital benefits.

    It’s not helped by the fact that the government appears to be pushing ahead with the dangerous DWP WCA changes as I reported. But the fear is elevated even more so by the lack of clarity around changes to PIP.

    Whilst the government still haven’t announced whether they will be reforming PIP, there’s been room for much speculation – especially from the tabloid press, like Reach-owned outlets, who rely on clicks to make money.

    DWP PIP clickbait from Reach outlets

    The Canary has previously reported on how tabloid and local news conglomerate Reach PLC has been whipping up fear with their constant stories on “DWP PIP”, with very little evidence to support that there actually is any news.

    If you Google the phrase “DWP PIP” and click “News” I can almost guarantee that your results will be full of the likes of the Mirror, Express, CambridgeLive and of course BirminghamLive.

    This is because the rags have figured out that while there’s so much uncertainty around the benefit changes that will affect our lives, many disabled people are frantically searching for any scrap of information.

    Instead of going to the heart of the matter and seeking the truth, Reach is doing what they apparently do best nowadays – mine people’s fear for clicks. They’re writing stories based on rumours and even old or abandoned plans that are designed to confuse and spread fear which are more likely to be shared and generate more ad revenue for them.

    It’s disinformation

    I rather kindly used to refer to this sort of “journalism” as misinformation. But when they’re generating so many stories around DWP PIP with clickbait headlines – but without giving the audience the full picture – it’s actually purposeful disinformation at this point. And while it isn’t for political gain in the same way that the scrounger narrative in right-wing press is, it’s definitely being used for their own gain.

    I don’t in any way blame disabled people for spreading and sharing this disinformation. When we’re all so desperate for news and fraught with the fear that our benefits will be cut yet again, it’s only natural to want to share any scrap of what seems like news with others who we also know are scared or struggling.

    Instead, I want to offer some reassurance.

    What it’s important to remember

    It’s true that we don’t know what’s going to come out of the Autumn Budget. We also don’t know when DWP PIP reforms will be announced – but it’s looking more likely that it will be spring at the earliest. While that isn’t much comfort, it at least means nothing is changing yet. There are also, as yet, no immediate plans to means-test DWP PIP, as my fantastic colleague Hannah pointed out yesterday.

    I also wanted to direct you to journalism around disability benefits that you can trust. Here at the Canary, we have many disabled journalists and allies who will only publish what we know to be true, as opposed to clickbait propaganda.

    There’s also the indomitable Disability News Service run by John Pring and of course the Big Issue. Some great people to follow on Twitter for disability benefits are DPAC, Paula Peters, Ben Claimant, and Dr Jay Watts.

    Take time for you

    Finally, times ahead might be bleak but remember you don’t have to constantly be consuming news about something which can be triggering. Whilst it is important to fight these changes, constantly fighting will only lead to burn out.

    So remember, check your sources on anything ‘DWP PIP’ related, consume media you can trust, and take time for you. The world won’t crumble if you delete the Twitter app or take some time away from the internet to eat some cake, watch some trashy TV, or spend some time with your loved ones.

    Featured image via the Canary

    By Rachel Charlton-Dailey

    This post was originally published on Canary.

  • Tuesday 29 October is an auspicious day for the myalgic encephalomyelitis (ME/CFS) community. Crucially, it marks three years to the day the National Institute for Health and Care Excellence (NICE) implemented its updated guideline for the devastating chronic illness.

    However, in that time, the NHS has continued to neglect, gaslight, and abuse people living with ME. A notable recent example of this is 23-year-old Carla Naoum – who West Middlesex University Hospital has just sectioned under the Mental Health Act. In other words, the state of healthcare services for people living with ME hasn’t improved.

    It’s why long-time ME campaigner Sally Callow is announcing the launch of a vital new ‘M.E.- Friendly Hospital Charter’.

    What does it call for? In Callow’s own words, “dignity and care in healthcare” – or in short – the very basics NHS hospitals should be affording patients. This is because, as it currently stands, they aren’t even giving ME patients this much.

    A hospital charter for ME/CFS

    On 21 October in 2021, NICE put new guidelines in place for people living with ME/CFS. In principle, these were a huge improvement on the former guidelines, since they removed treatments that had been causing harm to people living with the disease. Notably, it removed graded exercise therapy (GET), and downgraded cognitive behavioural therapy (CBT).

    However, as the Canary has previously noted, this hasn’t stopped clinicians from pushing these on ME patients regardless. Significantly, hospitals are still failing to adhere to the new guidelines more broadly – and even when they are, it still hasn’t been enough. This has been the case for Carla in West Middlesex hospital for instance.

    For this reason, through her social enterprises Callow has been working on two major projects to shake up the state of NHS care for people living with ME.

    Campaign group ME Foggy Dog and ME training organisation the Stripy Lighbulb CIC first launched their severe ME NHS Protocol campaign in February 2024. This calls for the creation of a protocol that sets out how clinicians are to implement the NICE guidelines and

    Callow penned an open letter to key government and shadow cabinet ministers across England, Scotland, and Wales. Over 5,000 people have signed it since its launch. You can add your name to this here.

    Now, Callow is also announcing the launch of ‘The M.E.-Friendly Hospital Charter’ alongside this.

    Five core principles – what’s missing from NHS ME/CFS hospital care

    Unlike the protocol, this encompasses hospital experiences of people living with ME/CFS more broadly. However, Callow pointed out that it will benefit anyone living with ME – including severe ME patients.

    To bring it together, the Stripy Lightbulb Club and ME Foggy Dog hosted a focus group with ME patients, carers, and members of the NHS, from all nations of the UK. In other words, the whole process put patients at the heart of drawing up the charter.

    Notably, they held a Zoom session with a diverse demographic of people from these groups. On top of this, Callow made sure to include ME patients of different severities. Vitally, she did so in a way to maximise their safety during the process. For instance, severe ME patients that couldn’t attend the video meeting could still participate via email, and over a time period that was appropriate for them.

    Essentially, the charter lays out the standards of care ME patients should encounter in hospital environments.

    More specifically, it sets out a series of key principles hospital staff should follow when treating ME patients. It has five core principles, which are:

    1. Patient and Carer Expertise: The individual with M.E. and their carers are the most knowledgeable about their condition. Their insights and experiences should be prioritised in care planning and delivery.
    2. First, Do No Harm: Hospital staff must be vigilant in avoiding actions or treatments that could exacerbate M.E. symptoms. Even seemingly minor interventions can have significant negative effects.
    3. Mandatory Reading of 2021 NICE Guidelines: All staff involved in the care of M.E. patients are required to familiarise themselves with the 2021 NICE Guideline as a minimum standard of practice.
    4. Avoid Encouraging Over-Exertion: Patients with M.E. should never be encouraged or forced into over-exertion. Staff must understand that even minor activities such as exposure to light, short conversations, or sitting up in bed, can be overwhelming.
    5. Comprehensive M.E.-Specific Care Plan: A detailed, individualised care plan must be developed for each M.E. patient as soon as possible and strictly followed to ensure their needs are met effectively.

    Crucially, Callow emphasised to the Canary that these principles in particular were “non-negotiable”. She explained how these were the five key things the focus group members all agreed needs to happen to improve ME patients’ experience on the NHS hospital estate.

    Patient-led and patient-centred

    There’s also further patient-led principles that expand on these. For instance, one stipulates that hospitals:

    Must create environments that are ME/CFS-appropriate. This includes providing quiet and dimly lit spaces, access to personal items like eye masks and ear defenders, and ensuring that all care is tailored to the needs of ME patients.

    Another spells out the simple, but regularly disregarded point that encouraging ME patients to be mobile:

    can be counter-productive or cause actual harm.

    Alongside the core document, the charter also includes a series of case studies from people living with ME. These detail their experiences of care in hospital settings.

    Callow came up with the concept of a charter following multiple meetings with NHS officials for her protocol campaign. She told the Canary that:

    I kept being told, there is no provision, our infrastructure means we can’t give you a side room, we’ve not got enough money for that, I kept getting the brush off from government. So, I started to think of things that could be implemented to improve healthcare, but on a basic level.

    Moreover, she explained that she feels this is vital in:

    the absence of commissioned services, protocols, and policies.

    Of course, this is all she is also fighting for in her protocol campaign. And those meetings with key NHS personnel were partly the result of a campaign she launched earlier this year.

    NHS already engaging

    As the Canary previously covered, the Stripy Lightbulb Club and ME Foggy Dog started the new Bed For Severe ME Day campaign in August.

    A key part of this was an online letter writing action. In effect, this asked members of the public to send a letter to their local NHS integrated care boards (ICBs). Callow had put together a template for people to use.

    The letter asked ICBs to get in touch with ME Foggy Dog regarding the NHS protocol for severe ME/CFS. And thanks to the efforts of people who got involved with the campaign, some ICBs did indeed contact Callow.

    She has since engaged with four ICBs, and had positive meetings with key staff at each. For the moment, she is keeping these ICBs anonymous while she continues to work with them. However, she feels that – while still early days with this engagement – it demonstrates clear appetite for the protocol and charter.

    Incidentally, Callow is also relaunching her Bed For Severe ME Day campaign to coincide with this. Going forward, she plans to host it annually on 29 October, as a significant date in the calendar for people living with ME. So, if you want to help her reach out to more ICBs, you can find the template here.

    A way forward

    Callow told the Canary that a common reaction she has encountered in many of these meetings with NHS staff has been shock. She said that:

    People in the NHS that I’ve spoken to have said reading the charter, it’s shocking how basic some of the things are.

    And they’re right to be. It is horrifying that in 2024, hospitals aren’t giving ME/CFS patients these basic levels of dignity and respect in care. Callow made the point that the five core principles are what all the charter stakeholders said vitally needs to change. In other words, these were missing from ME patients’ experiences of hospital care.

    So, she expressed to the Canary that:

    In the absence of commissioned services, policies, and protocols, this charter will ensure appropriate and adequate care and support for ME patients on the hospital estate.

    Callow’s new charter and protocol are part of the sorely needed action to implement change for people living with ME. And thanks to her persistent hard work and unwavering dedication to the ME community, it looks like that’s starting to pay off.

    Featured image supplied

    By Hannah Sharland

    This post was originally published on Canary.

  • Deaf and disabled people’s organisations (DDPOs) and trade unions have called on Rachel Reeves and Liz Kendall to rethink dangerous plans to cut Department for Work and Pensions (DWP) out-of-work benefits for severely disabled people. It comes amid speculation over changes to the so-called WCA.

    Labour: stop anymore cuts to DWP benefits

    Twenty-four DDPOs and unions have signed a letter to the secretary of state for work and pensions Kendall and chancellor Reeves demanding they cancel the Work Capability Assessment (WCA) changes which would see claimants’ benefits reduced by 50%.

    The letter states:

    The consequences of these measures will be devastating for the Disabled people affected. They will also add to already unreasonable workloads and working conditions for frontline [Department for Work and Pensions] staff.

    The WCA changes were first proposed by the previous Conservative government and many hoped the Labour Party would reverse this. However, media reports in the last few weeks have indicated that the government plans to go ahead with some of the changes, as part of Reeves’s package of savings.

    Although the changes would only apply to new claimants, that’s still a substantial amount of people. According to the DWP’s own figures, approximately 453,000 disabled people are estimated to be affected by 2028/29.

    Increasing the risk of “entrenched deprivation”

    The change will see 93% of those affected losing around £416 per month – or £4,990 per year. Around 290,000 of these will be subject to conditionality, where they are expected to engage in work search activity or risk having their DWP benefits stopped.

    This is despite many disabled people struggling to find work that is either accessible or will make them sicker. The DWP know that only 15,400 will be able to move into paid employment- as their own figures tell them this.

    The letter also says:

    It is clear that these measures will do nothing to address current labour shortages. They will however increase levels of entrenched deprivation.

    One of the two main groups of disabled people affected are those in the “substantial risk” group.

    These are people living with such severe mental distress they are assessed by medical professionals to be in serious danger of harm to themselves if  the DWP forced them to engage in work search activity. While new claimants in the substantial risk category will not be expected to find work, a cut of their benefits of 53% may force them to.

    DWP putting claimants at extreme risk

    John McArdle, a benefit claimant in the substantial risk group, said:

    Thinking how this would affect me personally is hard. Emotionally. All I know is that with more pressures on me to engage, I’d probably just fall. The effects of the loss of income on me would be catastrophic. Deadly. The inadequacy of benefit payment levels mean I am already finding it hard to keep my head above water right now. I honestly don’t think I’ll be able to survive.

    The letter comes as disabled activist and one of the founders of DPAC Ellen Clifford is due to begin challenging the government on the consultation in the High Court. Clifford argues that the consultation period was too short (four weeks shorter than usual), was not clear enough, not rational, and as a result people could not accurately respond.

    She said:

    The combination of these cuts – entailing a dramatic drop in income inflicted on those who are too disabled to escape poverty through paid work – alongside the attempt to legalise suicide through Kim Leadbeater’s Private Members’ Bill is terrifying for Disabled people.

    Both these measures coming at once feels like an assault on our right to exist. What sort of a society does that make Britain today?

    A disclosure hearing for Clifford’s case is scheduled for this Thursday 31 October, with the legal challenge being heard in the High Court on 10 and 11 December.

    Featured image via the Canary

    By Rachel Charlton-Dailey

    This post was originally published on Canary.

  • Corporate media conglomerate Reach is at its fearmongering, clickbait antics again over Department for Work and Pensions (DWP) Personal Independence Payment (PIP) plans. Its assemblage of local and national outlets have published a rush of news stories that the Labour government intend to reform PIP. This time, specifically it centres around potential means testing. However, behind the headlines there’s little substance to the stories.

    That hasn’t stopped them spinning these to imply the DWP will implement means-testing for the disability benefit – with no evidence.

    Of course, its all in pursuit of clicks for ad revenue – but its persistent nonsense like this unconscionably adds to chronically ill and disabled claimants distress.

    DWP PIP: a new survey doesn’t mean means-testing

    The originating outlet in question was the usual culprit: gutter pseudo-local news site BirminghamLive, which led with the headline:

    DWP PIP claimants will be asked to detail disability costs as Labour plans reforms

    As the name suggests, it concerned a new survey that the Labour-led DWP is carrying out. Minister for disabled people Stephen Timms referenced this in response to a written question by Poole MP Neil Duncan-Jordan.

    Duncan-Jordan was querying what assessments the department had made to assess the “adequacy” of PIP for supporting the “extra costs of disability.”

    As part of his reply, Timms said that:

    DWP pays close attention to the evidence base on the extra costs faced by disabled people; including academic research, analysis by Scope, and DWP’s own commissioned research on the Uses of Health and Disability Benefits from 2019. In order to understand more, DWP is now undertaking a new survey of Personal Independence Payment customers to understand more about their disability related needs. This project has an advisory group of experts including representatives of the disability charity Scope and academic experts.

    Essentially then, it looks as if the DWP is hosting a survey to find out the additional costs disabled people experience. Of course, this is yet another awful proposal from Labour, for numerous reasons – not least the fact it’s putting the emphasis on a marginalised group to quantify their additional costs.

    Obviously, it could suggest the department plan to cut the benefit, or means-test it. It could also mean that it wants to uprate it to better align with disabled people’s needs.

    In the context of chancellor Rachel Reeves’ austerity rampage, and DWP boss Liz Kendall’s rhetoric on long-term sickness, the former seems more likely.

    The point is though, there’s a lot you can infer from this – but we don’t currently have concrete information. In short: we can only surmise what it could all mean.

    Nothing new on DWP PIP reforms

    In a nutshell, this was the entire basis of BirminghamLive’s story. Of course, it’s not a lot to go on – and the Canary checked – the DWP has yet to publish any further information on the survey. What was notable was that it wasn’t even the first time Timms had mentioned the survey. He’d done so in a different written question response at the start of October. The Big Issue had already reported on this in another story mid-month. Yet naturally, BirminghamLive was presenting it as something new.

    Given the lack of detail, the outlet fleshed the article out with other information. And it was from this the scaremongering really took off.

    In particular, the article brought up examples of disability benefits in other countries. Specifically, it wrote that:

    In some other countries, specific costs are taken into account when deciding how much a person will receive in disability benefits, as outlined in the previous green paper to reform PIP. In New Zealand, the amount of disability allowance paid is based on actual extra costs that are verified by the person’s health practitioner, and these can include clothing, counselling, medical alarms, gym/swimming pool fees, energy/heating, special foods and prescriptions. All costs must have relevant evidence provided in the form of receipts, tickets and bills.

    It also gave other examples of disability benefit systems that operate similarly in Norway and Sweden.

    Of course, the implication of including this is obvious. Effectively, it linked Timms’ answer with information that made the implicit suggestion that this would mean means-testing PIP.

    However, it was how another corporate media outlet leaned into all this that became really problematic.

    Misrepresenting the DWP PIP survey

    Media conglomerate Reach Plc owns BirminghamLive among its enormous portfolio of pseudo-local media sites. Reach also operates a number of national media sites including the Express, the Mirror, the Daily Star, and the Daily Record.

    Alongside BirminghamLive, Reach faux local news publication Cambridge News covered the story. It linked to BirminghamLive’s original coverage as its source. And notably, in its version of events, it wrote how:

    The department also made reference to international approaches, explaining that in other countries, disability benefits consider specific costs as shown in a prior green paper on PIP reforms.

    You can read through the entire BirminghamLive article and there’s no suggestion that the international examples came from the DWP. However, here, Cambridge News is saying that it did. The error, or more likely, deliberate sleight of hand gives the impression that this is what the survey is really all about. But the news story it’s citing gives no firm evidence of this. Instead, the outlets have jumped to these conclusions seemingly of their own accord.

    What’s more, another Reach outlet – the Daily Recordhad already published news about the survey separately. This was days ahead of the BirminghamLive piece – and made no mention of the international examples.

    Search engines and shareholders

    And the misinformation is one thing, but the fear it could stoke for DWP PIP claimants is quite another. As the Canary has pointed out before, sensationalistic spin and preying on benefit claimants is Reach’s bread and butter.

    Moreover, it churns out a stream of baseless, non-stories like this to tap into search engine algorithms.

    The Canary’s Steve Topple has laid out how this works in practice. But crucially, there’s a reason for all this. And that’s its shareholders.

    This would be the likes of asset management companies and investment banks. Among these are big players in the financial sector such as Hargreaves Lansdown, BlackRock, and JP Morgan.

    So, it’s only natural these outlets – in bed with corporate capitalist interests – would punch down on DWP PIP claimants. This was just one of its latest clickbait pieces of drivel to makes money off the backs of chronically ill and disabled claimants’ fears. However, it certainly won’t be the last. Needless to say, if you want accurate information on PIP reforms, readers should steer clear of Reach’s sites.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • An opaque firm registered in an offshore tax haven that appeared in the Panama Papers is among the largest donors to a major lobby organisation pushing for UK MPs to legalise assisted dying.

    This was a donation totalling over £300,000 to Dignity in Dying’s sister charity Compassion in Dying. However, the group has refused to disclose the entity or person behind it. Despite this, information from the infamous 2016 leaks reveals a sprawling web of companies across numerous other tax havens connected to the murky donor, from a multitude of industries.

    While the Canary has been unable to track down who it ultimately originated from, the donation still underscores something vital about the groups lobbying for the new law. Specifically, that their enormous influence is a product of a series of obscure but exceedingly wealthy financiers’ exceptional funding towards their work.

    Meanwhile, grassroots disabled campaigners have no such substantial resources to deploy in opposing it. In other words, this is far from an equal fight. When chronically ill and disabled people’s lives are on the line – this could have profound and dangerous consequences.

    Assisted dying: lobby group’s tax haven company funding

    Between 2022 and 2023, an opaque donor titled ‘Church Street Trustees’ funnelled £300,000 to Compassion in Dying. The sizeable sum made it the nonprofit’s second largest donor during the period. As it turned out however, the secretive financier cropped up in the notorious 2016 Panama Papers leaks. It’s registered in St Helier, Jersey.

    The company is what’s known as a ‘trust corporation’. Essentially, this means that it acts as an ostensible corporate trustee on behalf of an individual or business trust. In Church Street’s case, it does so for hundreds of companies and trusts based in various offshore tax havens.

    Their registration in these jurisdictions doesn’t automatically imply criminality or corruption. However, money launderers regularly use trusts – especially with tax haven arrangements – to hide identities, dodge tax, and move money around in other illicit dealings. It’s therefore not beyond the realms of possibility that as administrator of these trusts, Church Street is facilitating these forms of financial skulduggery.

    Unfortunately, there’s not a whole lot of information on Church Street Trustees directly. The Panama Papers disclosures show most of the companies using it trace back to shareholders in South Africa. The Canary found over 200 instances of this. These were linked to hundreds of companies in offshore tax havens like the British Virgin Islands and Hong Kong.

    In the only major Panama Papers reveal for the company, it was embroiled in one of the largest agricultural land grabs in Africa. Again, this was through another convoluted matrix of offshore firms.

    Concealing a wealthy donor’s identity

    Largely though, the trail goes cold between Compassion in Dying, its sister organisation, and Church Street Trustees Ltd. Overall, there’s nothing concrete – that we could find – connecting them.

    Obviously however, the use of a trust company in itself raises significant questions. In particular, why has someone made the donation using this covert offshore trust vehicle? The simple answer is that: whoever donated through it has clearly done so to conceal their identity.

    We contacted Compassion in Dying and Dignity in Dying’s shared media officers for more information on this. The Canary impressed upon the organisations that their transparency over who’s funding them is surely within the public interest. Unsurprisingly, they failed to disclose any further information on Church Street Trustees, ignoring the basis of our enquiry altogether. Instead, they came back only with a generic response which read:

    Compassion in Dying’s funding sources are stated clearly in our public accounts and we are regularly audited, in line with charity law.

    Compassion in Dying is a registered charity in England and Wales (1120203) which supports people to make informed choices, start honest conversations about death and dying with loved ones, and record and revisit their wishes whenever they want to. The charity provides this service through an information line and through policy work to drive changes to the healthcare system so that people’s end-of-life decisions are heard, understood and respected when it matters most.

    We are proud to be a sister charity to Dignity in Dying, a not-for-profit membership organisation campaigning to change the law to allow the option of assisted dying for terminally ill, mentally competent adults in the UK. The two organisations share an aim of improving dying in the UK by putting people in charge of decisions about the end of their life. We work differently and are legally separate, with distinct governance, boards, and finances. This relationship is stated clearly on our respective websites. Our Chief Executive leads both organisations and some resources are shared, including an office and some staff. While Compassion in Dying supports law change in principle, it does not campaign on assisted dying.

    Of course, the Canary has already called their supposed degrees of separation into question. This is not least because contrary to its claim of financial independence, we exposed how some of Compassion in Dying’s funds were bleeding over into its sister organisation’s work.

    We also highlighted to Compassion in Dying a potential error in its accounts pertaining to Church Street Trustees. In its 2022 annual return, it displayed both that year’s and 2021’s funding from the trust company as £204,009. The same figure didn’t appear in its 2021 report. It confirmed to us that this was a “typo” and that it would rectify this.

    Vested pharmaceutical interests in assisted dying

    The sole tidbit of information of any relevance to Church Street Trustees’ donation comes in files from the US Securities Exchange Commission (SEC).

    It revolved around electric field cancer therapy corporation Novocure. The company is the brainchild of Yoram Palti, professor of physiology and biophysics at the Israel Institute of Technology. Another Jersey-based company known as Volati Limited seems to be the owner of Novocure. In turn, Volati is owned by the Oden Trust. And Church Street Trustees Ltd is a trustee for it.

    Most significantly, Oden Trust traces back to one Gert Lennart Perlhagen, who was the founding investor for Novocure. He’s both the settlor (the original owner of the trust’s wealth) and a beneficiary of the Oden Trust.

    Novocure itself doesn’t produce any euthanasia drugs. That said however, Perlhagen’s former employer was Italian pharma company Farmitalia SpA. In particular, he was CEO for its UK and Scandinavian branches. It’s now owned by Pfizer, which produces drugs that the Canadian Association of MAID Assessors and Providers recommends.

    The Canary isn’t suggesting that Perlhagen, Pfizer, or anyone in connection to them is behind the donation. The simple fact is, there’s no way to know with the information in the public domain. However, this is precisely the issue. The Church Street Trustees donation could be from a company or individual with interests or connections to the pharmaceutical corporations in the business of euthanasia drugs, and we wouldn’t know about it. The point is, the mystery donor behind the Church Street Trustees donation might just be someone who stands to gain from it.

    So, no matter how much pro-assisted dying organisations seek to frame it as a moral compassionate imperative, it’s not quite that simple. In a necrocapitalist society – that is, the socio-economic system reliant on death and debilitation of people and the planet for profit – the business of assisted dying is an industry too.

    Canada – a cautionary tale

    By the close of 2023, Dignity in Dying was sitting on £1.8m. That year, it had an income – largely donations – of £2.7m. It spent £1.5m of this on its so-called “campaign work” – or in other words, its political lobbying. Meanwhile, its charity arm Compassion in Dying had funds of nearly £700k by the end of 2023, with an income of £584,000. It spent nearly a million throughout the course of the year. So, where that immense money is coming from is obviously significant.

    Ultimately though, the problem isn’t just that a clandestine donor is funnelling large sums of cash to the charity concealing potential ulterior motives. It’s that the gargantuan funding from these wealthy donors gives it an outsized influence over policymakers.

    The work of Canada’s premier pro-assisted dying organisation should serve as a cautionary tale for what could happen as a result.

    Dying with Dignity Canada has been at the centre of the country’s controversial medical assistance in dying (MAID) laws. And it too has a gilded portfolio of elite backers. Its 2023 donor listing features companies like Google, Canadian fossil fuel firm Suncor, and life insurance company Sun Life.

    Incidentally, Pfizer has also sat among its donors – though it didn’t appear in Dying with Dignity’s most recent disclosure.

    With these funds, it has run extensive lobbying campaigns. For instance, as the Walrus reported, to promote the bill which would legalise assisted death for disabled people and those with non-terminal illnesses:

    the group sent over 50,000 letters to members of Parliament and hosted seven informational webinars on the bill which were attended by a total of 3,750 people. Its public records list nineteen communications with government officials that year, with subjects such as “Bill C-7” and “Five year review of Medical Assistance in Dying Legislation . . . with respect to advance requests, mature minors, and mental illness.”

    States failing to provide the basic tenets for life

    In 2021, Canada passed the bill on this. Since then, harrowing stories have emerged of chronically ill and disabled people turning to MAID due to poverty, homelessness, and a lack of quality healthcare. In other words, the state is pushing working class chronically ill and disabled people into the hands of MAID. It’s doing so because it’s failing in its core remits to ensure they have access to even the basic necessities – a livable wage, suitable housing, properly funded and equipped medical care – let alone a decent quality of life.

    Of course, healthcare is a postcode lottery, and both enormously underfunded and under-resourced here too. At the same time, the UK’s welfare system terrorises poor, chronically ill, and disabled people by design. The Canary’s Rachel Charlton-Dailey drew attention to the alarming juxtaposition of corporate media’s persistent tirade of scrounger, fraudster smears there to scapegoat and paint them as burdens to society. Seeing assisted dying and the perpetual punching down of chronically ill and disabled people side by side makes the idea of this slippery slope in the UK not so far-fetched.

    No, it’s probably not all part of some Machiavellian eugenicist plan. However, the capitalist forces backing it and a government ploughing more into the business of death, than the vital components of a decent life, show something alarming all the same. This is how the state and corporate interests intersect and view assisted dying as an exercise for the economy. That is, it’s cheaper to fund assisted suicide than it is to invest in the services people need to live. And let’s be clear: that means poor, chronically ill, disabled and marginalised people most of all.

    Political influence and power

    Moreover, much like Dying with Dignity Canada, the UK’s Dignity in Dying – unconnected despite the name similarities – has used its immense funding to shape public opinion and gain access to the halls of power.

    The Canary has already explored its intimate links to the Labour government, including the prime minister himself. However, this was really just the tip of the iceberg as far as its lobbying is concerned.

    Director Sarah Wootton hosted a fringe event at the recent Labour Party conference. The group had a stand in the conference’s main exhibition hall. Its website boasts how it regularly meets with parliamentarians and provides them with briefings. Now, with the bill in the House of Commons, it’s going to greater lengths to garner public support.

    To get a sense of the extent of its lobbying efforts, you need only look at the money it has thrown at ads across social media. Meta provides detailed information on Facebook and Instagram adverts through its Ad Library. It produces regular information reports to show the top spenders on ads across its platforms. Tellingly, Dignity in Dying shows up in its latest data.

    The Ad Library’s report currently only takes us up to 21 October. However, we can also see the most up-to-date ads until 26 October on the advertiser’s individual page.

    Nonetheless, the report paints a picture of the staggering scale of the organisation’s bid to influence the public. In the last three months, Dignity in Dying came in the top twenty in terms of spend on ads across Meta’s platforms.

    Dignity in Dying ramps up social media ads for the bill

    More specifically, between 24 July and 21 October, it splashed £87,651 on over 360 ads:

    Facebook Ad Library report showing Dignity in Dying at number 20 in the list of advertisers for the UK in the last 90 days. It shows its spending at £87,651, for 361 ads. List reads in order from top spend: Center for US Voters Abroad Turnout Project - £381,117 - 277. Oxfam Great Britain - £342,999 - 947. Greenpeace UK - £287,308 - 394. bp - £279,855 - 53. The Week Junior - £270,751 - 173. Save the Children UK - £230,055 - 145. WWF UK - £215,580 - 119. British Red Cross - £206,706 - 114. Transport for London - £188,968 -19. Fair Pay For All - £181,232 - 240. International Rescue Committee UK - £175,010 - 169. The Week UK - £129,091 - 249. World Vision UK - £124,450 - 280. The Children's Society - £109,652 - 191. Health Equals - £108,634 - 417. Agriculture and Horticulture Development Board - £103,993 - 244. Disasters Emergency Committee (DEC) - £93,520 - 93. Amnesty International UK - £90,573 - 402. IFAW - £90,299 - 344. Dignity in Dying - £87,651 - 361.

    In the last month alone – which the Ad Library currently shows as between 22 September to 21 October – it forked out £68,926 of this for 190 ads. In other words, Dignity in Dying has paid for the bulk of these ads since Leadbeater confirmed she would introduce the bill on 3 October.

    Unsurprisingly, it also ramped this up after the bill’s first reading on 16 October too. It topped the tables for ad spending in the last week displayed (15 – 21 October) – at nearly £30,000 in that time alone. As a result, for that period it came in at number four in the data. This was behind only the Disaster Emergency Committee (DEC), Save the Children UK, and Greenpeace UK.

    And since then, it has put out vast numbers more ads as well. The Canary identified a staggering 150 ads Dignity in Dying has launched just since 21 October. Invariably then, that spend figure has likely shot up considerably. As an example, we found it had launched 21 ads on 21 October (though not all of these remain active). According to Meta’s Ad Library, it spent £4,169 on them, so it is likely to have forked out tens of thousands of pounds in the mere days since.

    Naturally, these ads urge constituents to call on their MPs to back the bill. Some send social media users through to its petition, which currently has over half a million signatures. Others direct them to its email campaign for the public to write to their MPs.

    Assisted dying: not in a vacuum

    Dignity in Dying says it’s not in favour of expanding out assisted dying beyond terminally ill patients. The problem is though, even if we’re to take it at its word, the bill doesn’t sit in a vacuum.

    Already, 54 MPs are calling to widen the scope of the bill beyond terminal illness. According to the Telegraph, this includes 38 Labour MPs, thirteen of which are in government positions. The outlet didn’t confirm the identity of these MPs, with the exception of Labour MP for Morecambe and Lunesdale Lizzi Collinge.

    What’s more, Dignity in Dying isn’t the only lobby group pushing for the bill either. Humanists UK is another extraordinarily well-funded and connected organisation. And it is advocating for it to include adults who are:

    intolerably suffering from an incurable, physical condition

    The group had a stonking £3.16m in reserves by the close of 2023, with a donor income of £3.37m that year. Humanists isn’t a single issue organisation, so not all its funding is for this campaign. It had restricted funds ring-fenced for its assisted dying work totalling nearly £100,000 in 2023. Of this, it put over £65,000 to use. However, this won’t be the only funds it taps into for its lobbying on this. For instance, it poured nearly a million pounds into its overall public affairs and policy work for 2023 – so some of that invariably went to its assisted dying campaign.

    Again though, there’s little information on where Humanists gets its funding, since it simply doesn’t disclose this. The only funder we do have information on for its assisted dying campaign work is the A B Charitable Trust. It gave the organisation a £13,000 donation in 2014 for this work specifically, and has been a regular donor for its broader work. Yves Bonavero and wife Anne founded the trust in 1990. Bonavero is a hedge fund entrepreneur and founder of the Bonavero Institute of Human Rights at Oxford University.

    Notably, it was also the A B Charitable Trust that funded a supposedly impartial citizens jury project. This was purportedly to explore the views of the public on the issue. However, anti-assisted dying group Right to Life UK underscored a litany of issues with the jury’s claims to neutrality and expert balance. This is not least that the charitable body that conducted it, the Nuffield Council on Bioethics director Danielle Hamm was previously the director of Compassion in Dying. Unsurprisingly, Dignity in Dying and Humanists UK both championed its findings.

    But this also went even further than the two organisations. Jury members voted in favour of legislation including children, and for physician-assisted euthanasia as well. It’s more stark evidence of the potential for a slippery slope in action.

    Crowding out the voices of disabled people

    Humanists UK is also part of a broader network of organisations working towards an expanded law. It’s known as the Assisted Dying Coalition. My Death, My Decision is another of its members that wants a bill with a broader net.

    It describes itself as a “grassroots movement” – however, the company’s records tell a wholly different story. Financially, it is much smaller than Humanists UK, but it’s another case where organisational lines seem to blur. Specifically, the group has registered at the exact same London address as Humanists UK, and according to Humanists’ annual report, shares a staff member. Moreover, director and co-chair of the clinical advisory group for My Death, My Decision Dr Graham Winyard was previously a director of Dignity in Dying. This was for a stint between 2013 and 2016.

    Its grassroots framing is emblematic of the way in which these groups operate. They pitch themselves as in step with the public zeitgeist. Yet, they purposely downplay their inordinate role shaping, and manipulating the conversations on assisted suicide legislation. Through ads, the corporate media, and in parliament, they wield huge power and influence. With the massive funding at their disposal, they’re crowding out the voices of chronically ill and disabled people who oppose it.

    Time and again, neoliberal politicians and the corporate media have demonstrated that it views them as expendable. Now, on the possible cusp of legalising assisted suicide these are the people the public and parliament should be listening to most of all. That is, those with the least power, and the most to lose.

    Ultimately, if the clandestine moneyed interests driving these campaigns show one thing, it’s that this isn’t a level playing field.

    On 29 November, MPs would do well to remember that.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • One of the major lobby organisations calling for MPs to back a new assisted dying bill, Dignity in Dying, has significant ties to Labour Party prime minister Keir Starmer. On top of this, a board member of its sister charity has connections to none other than new Department of Health and Social Care (DHSC) head and prolific privatisation proponent Alan Milburn.

    A month ahead of the next reading of this in parliament, the group’s connections should send alarm bells ringing. Crucially, it raises the very real possibility that the well-funded organisation could sway ministers at the eleventh hour.

    Assisted dying bill: moving fast

    Labour MP Kim Leadbeater’s 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.

    On the 16 October, the House of Commons hosted its first reading of this. Now, it’s set to hold its second reading on the 29 November.

    As the Canary previously reported, Starmer had said he was prepared to fast-track the bill. He has made no secret of the fact that he personally supports it.

    Despite this, he has also indicated the government will not whip its MPs on this. What’s more, while Starmer backs it, there’s a notable split in his cabinet on this. Having previously voted for it in 2015, health secretary Wes Streeting has now confirmed he will vote against the bill.

    Even so, parliament passing the bill through to the next stage is a very real prospect. This is not least because influential groups calling for MPs to implement it in law have been running a comprehensive campaign to engage parliamentarians. Dignity in Dying, and its sister nonprofit Compassion in Dying are the key organisations in question.

    And crucially, the group appears to have direct lines to the ear of government.

    Dignity in Dying’s new chair and pal with PM

    Former Labour MP for Sheffield Central Paul Blomfield is a glaring case and point of this. According to Politico, Blomfield backs assisted dying for personal familial reasons. His dad took his own life aged 87 after a terminal lung cancer diagnosis, so has:

    spoken about how a more humane system could have given his family more time together.

    He was previously a vice chair to the Choice at the End of Life APPG between 2015 until March 2024. Who’s the secretariat – in other words, ultimately runs the APPG? Naturally, that would be Dignity in Dying.

    Fresh after Labour swept into power, Dignity in Dying appointed him a director and chair of the board. In fact, it did so quite literally days after the election, on the 10 July. Blomfield didn’t stand at the election, so has now shifted his focus to the new role.

    Blomfield’s bio on its website also isn’t shy about the fact that he worked alongside Starmer. This was as shadow Brexit minister between 2016 and 2020.

    That is, not long after Blomfield took up his new role as a director for Dignity in Dying, the prime minister – who he knows personally – decided to fast-track Leadbeater’s assisted dying bill.

    As Politico has pointed out, Starmer has been a long-time supporter of assisted dying. He voted for it the last time it was presented to parliament in 2015. What’s more, the outlet has highlighted how in his role as Chief Prosecutor and head of the Crown Prosecution Service, he had:

    overseen around 80 assisted dying cases in that role — and decided no prosecution should be brought in 79 of them.

    So it’s perhaps also little wonder he has vocally come out in support of passing the new law on this. However Blomfield’s connection shows how Dignity in Dying has sought to take its influence right to the heart of government.

    Blair-era advisor a trustee for Compassion in Dying

    Then, there’s Jo Gibbons. Gibbons has been a trustee for Compassion in Dying since 2016, and was previously a board member for Dignity in Dying between 2015 and 2021. However it’s Gibbon’s roles before that, which are notable in this. For one, Gibbons was a press officer for the Labour Party in the early Blair years.

    Then, she was SpAd to House of Lords peer Margaret Ann Jay for three years from 1998. Jay has been a staunch proponent of assisted dying. She has supported multiple bills, and was a vice chair to the Choice at the End of Life APPG between 2015 and 2019.

    Gibbons has held various other key roles with the Labour Party, including as director of corporate affairs for Tony Blair. Notably, her Compassion in Dying bio boasts that she:

    worked as a senior adviser for Tony Blair in Downing Street

    But it’s her role as SpAd for another notorious Blair-era minister that really stands out. For a year from 2004, she was a general election coordinator for none other than former health secretary Alan Milburn. Of course, that would be the same Alan Milburn that Wes Streeting has now officially drafted into his ranks as a lead non-executive director of the Department of Health and Social Care (DHSC).

    In December, despite the fact Milburn had no formal role within the Labour Party at the time, the Guardian’s Observer published an article airing his support for assisted dying, telling the outlet:

    When people today expect to have control over so many aspects of their lives, it feels paradoxical that we are denied the same about how we want to die. It’s perhaps the most important decision any of us can make. To deny that choice feels increasingly anachronistic. The time has come for a free vote in parliament on the issue.

    After standing down at the 2010 election, Milburn joined neoliberal think tank Demos. That just so happened to be right around the time it hosted the launch for the lord Falconer-led Commission on Assisted Dying.

    The Bernard Lewis Family Trust also funnelled over £80,000 to the think tank between 2010 and 2012. And that was the period in which the commission put together its report advocating for assisted dying.

    Coincidence? Quite likely not – as this seems to be the only period the trust donated to Demos. This is, as Canary previously highlighted, the philanthropic fund of the extremely wealthy Lewis Family. They’re known best as owners of the River Island clothing chain, but have sprawling interests across a range of investments.

    PR and lobbyist companies behind the campaign

    Outside Gibbon’s role as a trustee for Compassion in Dying, she has put her political experience and connections to good use in PR and marketing. She had a previous stint with infamous fossil fuel-shill Edelman, and was head of health industries marketing for PwC. The latter of these Milburn is also an advisor for. But it’s her own lobbying and consultancy companies that should make people sit up and take notice even more.

    One is Blackstock Communications, which Gibbons and fellow former Labour staffer Deb Hermer launched in 2022. The other is the Story Network, which Gibbons co-founded with former Labour councillor Alex Bigham, and Ed Owen – previous adviser to Labour foreign secretary Jack Straw in Blair’s government. All three have significant PR experience – and the DHSC even seconded Bigham to be head of NHS Test and Trace communications in 2021. On his LinkedIn, Bigham posted his attendance at Labour’s recent conference in Liverpool.

    Neither firm has joined the UK’s lobbyist register, so we don’t have direct lists of the companies and organisations they’ve lobbied for, or when they’ve done this. However, both have Dignity in Dying’s logo emblazoned on their webpages as previous clients.

    Given Bigham’s previous Test and Trace role, it’s also perhaps no surprise the Story Network lists the DHSC amongst these too. The point is, in multiple capacities, Gibbons has intimate connections to the Labour Party government, and perhaps most significantly, the DHSC in particular.

    Interestingly too, Blackstock has worked for the Labour Party itself as well. More specifically, it states that it has used:

    communications skills for delivering culture change to drive out antisemitism.

    It seems plausible then that Blackstock has been part of the Labour right’s purge of left-wing MPs through antisemitism smears.

    The icing on the cake though is probably that Blackstock Communications has testimonials for Gibbons splashed across its site. Unsurprisingly perhaps, one is from Dignity in Dying director Sarah Wootton. The other? It’s glowing praise from Alan Milburn.

    But for definitive proof the pair are, at minimum, still in touch – look no further than the who’s who of the Labour right’s little piss up in a brewery on Chancery Lane.

    In May 2022, all the Tony Blair top brass gathered there for 25 year anniversary celebrations of the 1997 election. Milburn was there, of course, as was Streeting, and now science and tech sec Peter Kyle. Crucially, listed among a handful of organisers Politico noted at the event was Jo Gibbons. We at least know then that the two have rubbed shoulders in recent years – and potentially Streeting too.

    A wake up call over assisted dying

    The point is, one of the most prominent campaign groups pushing for assisted dying is well connected to the party in government. Of course, it doesn’t necessarily mean it has it all sewn up. However, it does show the enormous access to the key levers of power the group wields. Over the next month, Dignity in Dying will invariably utilise these connections.

    So, this needs to be a wake up call. Without concerted action – there’s the very real possibility MPs could get behind the bill. And if that happens, it could open the dangerous floodgates to legalised assisted suicide that will put chronically ill and disabled people’s lives at risk even more than they already are.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • A key campaign organisation and its sister charity lobbying the Labour Party government to pass a new law on assisted dying has taken significant funds from a billionaire’s philanthropic fund that’s separately ploughed hundreds of thousands of pounds into shady right-wing, Islamophobic think tanks and pro-Israel lobby groups.

    As a new bill to introduce assisted dying starts to make its way through parliament, the stakes for chronically ill and disabled people are ramping up fast. However, donor details buried in financial accounts from various charities have revealed the scale of the neoliberal capitalist forces they could be up against.

    Assisted dying bill: a well-funded lobbying campaign

    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. Labour MP Kim Leadbeater’s 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.

    On the 16 October, the House of Commons hosted its first reading. Now, it’s set to hold its second reading on the 29 November. In other words, things are moving quickly on this.

    Dignity in Dying is amongst the most prolific of lobbying groups pushing for parliamentarians to make it law. And it has been throwing millions of pounds at trying to make it happen.

    Follow the money…

    According to its most recent annual account, the company had an income of over £2.6m in 2023 alone. This was up from £1.7m in 2022. It spent over £2m of this on a range of PR, media, research, and fundraising activities throughout the year.

    Of course, this means the organisation is well-funded for its lobbying efforts. Across the year, the group hosted a parliamentary event, launched an open letter to party leaders, and ran a slick campaign to push for a debate in parliament.

    However, if you wanted to know where that £2.6 funds came from, you’d be mostly out of luck. It only provides breakdowns for the types of donations, not who or what, any of it was from. So, all we do know is that:

    • Nearly £1.4m came from membership subscriptions and donations
    • Over £472,000 from legacies and bequests
    • More than £827,000 from “high value donors”
    • Around £23,000 marked as “other”

    Notably though, the accounts don’t define what constitutes a “high value donor” – so it’s possible donors it has lumped in the first category may also have made sizeable contributions. Regardless, it doesn’t disclose who any of these are at any rate.

    Dignity in Dying’s sister charity sheds light on its donors

    It does however have a sister organisation – Compassion in Dying – and there is some information on its donors available.

    Dignity in Dying set this up in 2008. Technically, it’s a legally separate organisation, but the degrees of separation really end there. It shares a number of the same staff, including chief executive Sarah Wootton, who leads both organisations. They operate out of the same offices on Oxford Street.

    Purportedly, the difference between the two lies in their work. Specifically Dignity in Dying states that:

    Dignity in Dying campaigns to change the law to allow the option of assisted dying for terminally ill, mentally competent adults in the UK. Compassion in Dying is a registered charity that supports people to be in control of their end-of-life decisions because there is no one better to make them. While the charity supports the law in principle, it does not campaign on assisted dying.

    For all intents and purposes though, the pair are inextricably linked. In Compassion in Dying’s latest accounts, it owed £139,000 to Dignity in Dying for “staff resource and accommodation overheads”. This was for the last quarter of 2023.

    So while it isn’t possible to see where Dignity in Dying’s donations are coming from, it was possible to glean some insight from its sister organisation. Considering Dignity in Dying had £139k due from it, some of Compassion in Dying’s funds are invariably making their way into its work.

    In other words, whoever’s funding Compassion in Dying, is indirectly funding Dignity in Dying as well. So, the fact they claim financial independence is really just semantics.

    Billionaire bungs to assisted dying campaign

    By far its biggest funding has come from the Bernard Lewis Charitable Trust. Since 2017, it has funnelled £1.2m to the organisation. Additionally, between 2010 and 2012, it had given Compassion in Dying £270,000.

    On top of this, it has also directly donated to Dignity in Dying too. It did so in 2009 with a £25,000 donation. The trust’s accounts for 2023 aren’t yet available. However, across 2021 and 2022, it funnelled £320,000 to Dignity in Dying, on top of its donations to the sister organisation.

    Who owns the trust? That would be the exceedingly wealthy Lewis family of River Island fame. Of course, like most corporate capitalists, the family has its fingers in multifarious pies.

    Founder Bernard Lewis is where it all began for the family’s fortunes. Companies House lists him alone as an active director of no fewer than 20 corporations. Another company called Cavendish Square Secretariat acts as secretary for 52 companies. It’s owned by the Lewis Trust Group. The group’s portfolio spans various investment companies in England, property development in Poland, and a chain of hotels in Israel and the US.

    And if the company it keeps – or rather, the other organisations it donates to – is anything to go by, it seems it sits comfortably amidst right-wing neoliberal circles.

    For one, it was a regular donor to the Conservative Party between 2008 and 2010 – though this was chump change to its billionaire owners at £52,000. Founder Bernard Lewis has also directly donated £46,000 to the Tories, with donations most recently in 2015.

    Dark money think tanks and Zionist organisations

    Some of its recipients just so happen to be right-wing, dark money think tanks. For instance, at different points, it has donated to the Islamophobic Henry Jackson Society, Iain Duncan Smith-founded the Centre for Social Justice (CSJ), Policy Exchange, and Demos.

    Alongside this, there’s a Who’s Who of pro-Israel and Zionist organisations raking in money from the trust. It includes the Community Security Trust (CST) and the Jewish Leadership Council, among other Zionist groups. It has provided £397,500 to the CST since 2009. To the Jewish Leadership Council it has also given nearly £300,000.

    So you might wonder what business a trust channelling funds to these Apartheid-and now genocide-apologist organisations has with pushing assisted dying in the UK. It’s a damn good question, but the most obvious is that the right wing of politics and Zionism have significant crossovers and connections.

    However, these links should be alarming for another reason too. That is, that the Labour Party government has been lurching to the right at every possible turn.

    So, it’s perhaps no surprise that prime minister Keir Starmer has opened the door wide to the assisted dying bill as well.

    The Canary asked both Dignity in Dying and Compassion in dying for comment. Interestingly, both groups had the same media officers. One of these came back to us with a short response, stating that:

    Compassion in Dying’s funding sources are stated clearly in our public accounts.

    Assisted dying campaign: a right-wing slippery slope

    Obviously, assisted dying is an extremely sensitive, complex, and polarising issue. There surely must be few, if any topics that split the left and right so profoundly. There are course many who want to see it law as a compassionate option for those with terminal diagnosis.

    That’s understandable – to an extent.

    However, as we’ve underscored, that also brings up its own problems where economic burden narratives are concerned. The main problem is though, the buck doesn’t stop at terminally ill people.

    The fact that Dignity in Dying and its sister organisation has courted donations from big billionaire capitalists funding right-wing think tanks somewhat proves the point disability rights campaigners have been making.

    That is, when you take the assisted dying campaign in the context of the corporate capitalist ideology they espouse, it’s clear this will become a slippery slope.

    The Canary’s Rachel Charlton-Dailey has pointed out how this is happening already. Many MPs have been calling for parliament to widen the net. Invariably this will put chronically ill and disabled people in particular at risk of coercion.

    Countries like Canada serve as a cautionary tale for what will come next – and it’s exactly this.

    That powerful capitalist forces are wrapped up in Dignity in Dying’s assisted dying campaign should send alarm bells ringing. These are the same opaquely-funded organisations punching down and devaluing sick, disabled, and Palestinian lives.

    When it comes down to it – these are the moneyed actors pushing for the bill – and that should be cause for immense concern.

    Featured image via France24 – YouTube

    By Hannah Sharland

    This post was originally published on Canary.

  • The Labour government’s latest plans at the Department for Work and Pensions (DWP) is a Post Office scandal-scale disaster waiting to happen. Specifically, the department – with a rapsheet of failures to its name – now wants to not only snoop on benefit claimant bank accounts, but snatch money straight from them. It’s over DWP benefit fraud. Merchant of death and demonising rhetoric Liz Kendall was hinting at all this in the Telegraph – but obviously hasn’t put the wheels in motion on it – at least not yet.

    However, it would be completely in character with this callous continuity Conservative government.

    DWP benefit fraud: another dangerous idea

    Of course, anyone who knows the DWP, knows what a catastrophically horrendous idea this is. That’s not least because the department hasn’t exactly got a track record of getting things right:

    Take housing benefit claimants for instance. It was only in June that campaign group Big Brother Watch exposed how the DWP had wrongfully forced 200,000 housing benefit claimants through fraud investigations.

    What’s more, as the Canary has repeatedly pointed out – benefit fraud is a fiction – fabricated by successive austerity-obsessed governments and fanned by right-wing corporate media shills to scapegoat marginalised communities.

    The Telegraph was getting in on the punching down action, with it’s little puerile ‘gotcha’ moment that isn’t. Fraud has soared (soared they tell you) during the pandemic to, wait for it, a whole 4%. Except, it really hasn’t anyway. For one, that includes its own errors too. YES, it lumps its OWN mistakes in these statistics.

    Furthermore, the Canary’s Steve Topple has spelled out the nonsense that is the DWP’s categorisation of benefit fraud before. Specifically, he’s underscored how much of it is based on “assumptions and guesswork”. It includes people who have forgone their benefit, rather than engage with benefit reviews for example. We can’t possibly think of another reason people would choose not to deal with the DWP than to commit fraud. Nothing to do with its degrading, punitive, and inaccessible processes at all.

    So even if we’re to take the fraud stats in isolation – a sizeable chunk of that isn’t actually fraud at all. Then, let’s talk Personal Independence Payment (PIP). Fraud rates were so infinitesmally small last year, the DWP literally rounded it down to zero. Zilch. Nada.

    When things go wrong…

    Naturally, none of these facts will stop the Labour government and Liz Kendall from ploughing ahead with this despicable DWP benefit fraud plan.

    However, as ever, it’ll be chronically ill, disabled, poor, and other oppressed communities at the sharp end of this:

    Some raised the fact that the DWP draining people’s bank accounts could leave people out of pocket. Crucially, this will be people already living in poverty thanks to the paltry support the DWP has provided anyway:

    Of course, it’s not all that different from the way the DWP has conducted disgraceful benefit deductions. That is, the DWP has long been raiding benefit claimant bank accounts on behalf of utility companies and landlords.

    So now, Labour look to be gearing up to roll out yet another scheme that could so very easily go tits up. Obviously, it’s a terrifying prospect.

    This is especially so when we also know it has a penchant for demonising disabled people as fraudsters. And most significantly, its blame and shame culture is invariably denying, removing, and accusing them of fraud –  completely wrongly.

    The fear over DWP benefit fraud is the point

    But of course, the fear is part of the point. It’s all wrapped up with a nice little bow in its back to work coercion agenda more broadly. In other words, it doesn’t want people to claim in the first place – and acting as a deterrent is what the DWP does best. Naturally, it’s all to save the government money it prefers to funnel off to the private sector.

    However, its new fraud pet project could cost many claimants their lives – and Labour knows it. After all, the fear the DWP instils already has actively made claimants physical and mental health worse:


    It’s a fucked up welfare system when it’s more focused on a cracking down on miniscule rates of fraud than providing people the support they need to live. Unfortunately, so far, that’s been Labour and Liz Kendall’s approach to DWP benefit fraud writ large. This would be the next Post Office scandal were it not for one appalling fact – the DWP’s “systemic violations” of people’s human rights pretty much already is.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • Today I get to write about my favourite topic – myself, Rachel Charlton-Dailey, of course. As you may have already seen on Twitter, I’m delighted to share some exciting news with you all. As I’ve been hinting for a while now, I’m currently in the middle of writing my latest book – Ramping Up Rights.

    This one plays right into two of my favourite things – my passion for disability rights and most importantly gassing to legends on Zoom.

    I’m hoping it’ll be something close to a lot of your hearts too.

    Ramping Up Rights: An Unfinished History of Disability Activism

    My publisher Hurst calls the book:

    “A vivid history of the 100-year battle for British disability rights, spotlighting enraging injustices and inspiring campaigns, past and present: this fight isn’t over.”

    Last May, I was beyond overjoyed to host a conversation with disability rights legend Barbara Lisicki. But it was whilst Barbara was talking that I realised something that made me quite uncomfortable. Despite devoting my work to disability rights now, I knew very little about the history of disability rights.

    But I soon realised this wasn’t all my fault. There’s a huge gap in knowledge of disability rights history and one that is sorely needed to be filled.

    After chatting with my incredible agent, I realised there wasn’t one book that encompassed the different ways disabled people have fought and continue to fight for our rights in the UK.

    Sure there were books that talked about disability specifically and books that talked about specific fights, but there was nothing that covered our vast history.

    But I’ll be honest with you, I’ve had a lot of imposter syndrome around writing this book. Am I, a fairly new activist, the right person to write this? While that may be true, I’m a journalist first and foremost, and one who’s passionate about highlighting how the government and society treats disabled people.

    Of course, I don’t know everything about this topic, but I’m very lucky that I know a lot of people who were there and continue to be there. So this book is basically me wanting to learn more, calling up my incredible friends, and letting you in on what we talked about (well not all of it!).

    I’ll be guiding you through the very colourful history of how our rights were won, what we fought for, those we lost, and what we continue to fight for.

    It’s all our stories

    Ramping Up Rights isn’t my story, it’s all of ours.

    It’s the story of the Blind March of 1920, punks chaining themselves to buses, disabled people expressing our pain and fears through art, and those who make waves for us online. It’s the story of how governments and society tried to silence and even kill us, and how disabled people have reclaimed and continue to reclaim our power.

    Whilst this is a history book, it’s also documenting what’s happening now, because we need a spotlight on that too. The ongoing fights to live our lives as we should be able to.

    My hope is that by looking at where we’ve been, and how our rights were won, more can be encouraged and emboldened to join our fight to ensure disabled people have a future too.

    If you’d like to support me and the book, you can preorder it via the link below. Preorders are super important for new authors but especially so for a book like this, when disabled voices are so quickly cast aside.

    Ramping Up Rights is out in July 2025 with Hurst and is available to preorder now from everywhere you buy books.

    Featured image via Rachel Charlton-Dailey/Hurst

    By Rachel Charlton-Dailey

    This post was originally published on Canary.

  • In yet another U-turn, the Labour Party-led Department for Work and Pensions (DWP) is set to press ahead with plans to ‘reform’ the WCA, outlined by the previous Tory administration. These will strip health-related benefits from nearly half a million claimants.

    It all comes amidst DWP boss Liz Kendall’s drive to coerce chronically ill and disabled claimants into work. The move will purportedly make annual cuts of £1.3bn to disability benefits. However, it will come at the cost of chronically ill and disabled people’s lives.

    DWP WCA reforms: Labour picking up where the Tories left off

    To date, the new Labour government has been tight-lipped about its plans for dangerous health-related benefit reforms to Universal Credit set out by the previous Tory administration.

    This was the former Conservative government’s planned reforms to the Work Capability Assessment (WCA). It ran a consultation on these between September and October 2023. As the Canary’s Steve Topple previously detailed:

    the DWP is planning to change the WCA. Specifically, it’s planning on taking out or changing the following features:

    • Factoring in people’s mobility.
    • Bladder or bowel incontinence.
    • The inability to cope in social situations.
    • People’s ability to leave their homes.
    • Work being a risk to claimants or others – a clause which means that an individual is “treated as having limited capability for work and work related activity “

    In November, the then Tory-run DWP responded to the consultation. Notably, it laid out how it would proceed with a number of these. Specifically, it decided to take forward changes to:

    • Work being a risk to claimants. Specifically, it will tighten the criteria for this. Notably, it stated that: “We will specify the circumstances, and physical and mental health conditions, for which LCWRA Substantial Risk should apply.” In other words, the DWP will decide who this will apply to going forward – and will obviously move the goalposts.
    • People’s mobility – which it’s removing as a descriptor altogether.
    • People’s ability to leave their homes – which it will now reduce the points for in the assessment.

    Particularly with the last two, the DWP essentially decided that they should instead have to work from home. In both cases, it claimed it would “protect” people who this would harm. However, again, it’s the DWP that will decide who that is. That means to say, assessors with a history of denying benefits to people that need them, and linked to benefit-related deaths, will have the say on this in practice.

    Overall, as Topple pointed out, it’s all in an attempt to:

    reduce the benefits bill by forcing more chronically ill and disabled people into work.

    Another alarming U-turn

    Of course, these DWP WCA reforms were all put in motion by the previous Tory government. Both before, and since Labour took power, disability rights campaigners and activists have called on Kendall and ministers at the DWP to drop these dangerous reforms.

    Now, “people briefed on the plans” – presumably civil servants at the DWP, or perhaps ministers – have leaked that it intends to plough ahead with these. So, it seems that, one year on from the Tories’ consultation, Labour will be picking up and running with all this. This is according to revelations from the Financial Times which wrote that:

    Work and pensions secretary Liz Kendall will press ahead with £1.3bn in annual cuts to UK sickness benefits announced by the previous Conservative government, according to people briefed on the plans.

    The Labour government is expected to retain contentious changes to the “work capability assessment” that were introduced last year by then-prime minister Rishi Sunak, in a move that is likely to cause concern among disability rights activists.

    At the Labour Party conference in 2023, then shadow minister for disabled people Vicky Foxcroft had told the Disability News Service (DNS) that it would not follow through on these. Of course, this was before Labour’s top brass snubbed Foxcroft for the role of disability minister. Instead, it installed her as a whip. In other words, it both sidelined her in the DWP, and curtailed her ability to hold its ministers to account in Parliament. Therefore, it’s perhaps little wonder seems it’s about to make another, massive U-turn over this.

    Most gallingly of all though is the fact Labour will be doing this, knowing full well the impact it will have.

    Labour to strip 450,000 people of health-related benefits

    In particular, these changes will mean that the DWP will strip health-related benefits from over 450,000 people. For each change, the DWP’s own figures showed a breakdown of just how many people would lose out due to DWP WCA changes. As Big Issue reported, this was:

    • 163,000 for tightening the criteria on work as a risk to claimants
    • 260,000 for removing the mobility descriptor
    • 33,000 for changing the points awarded for people’s ability to leave their homes

    Specifically, this applies to new DWP WCA-related claimants, or those who’ve had to reapply for them.

    What’s more, Big Issue highlighted that the Office for Budget Responsibility (OBR) had these would mean just 5,100, 8,800, and 1,500 more people finding work respectively as a result of these changes. In other words, out of 457,000 people the DWP would deny benefits, just over 15,000 of those would actually likely move into work. What’s more, this says nothing of the mental and physical health impacts it will have on people – either in losing their benefits, or being forced into employment.

    Of course, this should be obvious, given that there aren’t enough jobs available. Moreover, many employers don’t make roles accessible to chronically ill and disabled people anyway.

    Notably, as has been an ongoing trend after 14 years of the Tories wrecking the economy, job vacancy number continue to decline. So far, Labour hasn’t bucked this either – the Office for National Statistics (ONS)’s latest figures detailed that:

    The estimated number of vacancies in the UK in July to September 2024 was 841,000, a decrease of 34,000, or 3.8%, from April to June 2024.

    That is, there are only just over the number of jobs than there are those long-term sick and disabled Labour wants to force back to work.

    On top of this, the FT article also stated that:

    the Department for Work and Pensions intends to deliver savings through its own reforms in the coming months, including via support to help disabled people into work, the people said.

    Naturally, neither these briefed “people”, nor the FT elaborated on precisely what this would entail. However, it’s likely this will be things like Kendall’s job advisers in hospitals scheme. Ostensibly, this is yet another ploy to push disabled people with “serious” mental health problems into the workforce.

    Callous continuity Tory on DWP WCA

    Obviously, Labour’s DWP ministers couldn’t just come out and say what the government’s plans are with their chest. Instead, in what has so far been a persistent feature of the Labour-led DWP, we had to find this out from anonymous tip-offs.  And conveniently, these were to its biggest cheerleaders for repressive, callous DWP WCA and benefit reforms – the right-wing corporate media.

    Of course, the timing of this has slotted in alongside a sweep of other controversial announcements this week. In particular, these have been contentious moves to bring down the so-called benefits bill.

    At the end of the day though, Kendall is forging ahead with these new DWP WCA plans. She’s doing so in the full knowledge that it will deny hundreds of thousands of people vital benefits.

    At the same time, forecasts project that it will actually result in very few of those people actually entering employment. Therefore, it will leave the majority with no or less income as a result.

    Unsurprisingly, Labour has also separately refused to release a key document on the DWP WCA. This would show the recommendations that have been made over the last five years for its improvement. In particular, this would be in light of claimant benefit-related deaths.

    Ultimately, the Tory-led DWP refusing chronically ill and disabled people benefits led to tens of thousands of deaths.

    Now, the news about the DWP WCA shows that Labour will be doing more of this – and putting countless more lives at risk in the process.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • Campaigners have delivered a petition to parliament from over half a million people. It calls for the Labour Party government to scrap its cruel winter fuel payment cut to millions of pensioners.

    This was on the same day new charity polling revealed that the policy will put nearly half of those pensioners now losing out on the benefit’s health at risk.

    Winter fuel payment: putting pensioners health at risk

    As the Canary has previously detailed, the government’s means-testing of the winter fuel payment will mean it will now deny the benefit to:

    • 1.6 million -84% of pensioners in poverty
    • 1.6 million – 71% of disabled pensioners

    These statistics came from the government’s own data and Equality Analysis.

    Therefore, the loss of the benefit will likely have far-reaching ramifications for pensioners’ health this winter. Now, non-profit Independent Age has surveyed older people to find out just how pensioners expect it to impact them. And the results are damning. It found:

    • 44% of older people (65+) in England think losing the winter fuel payment will negatively impact their physical health.
    • 49% of older people in England who will lose their winter fuel payment said they were planning to only heat and spend time in one room. 20% were already planning to do this but now an additional 29% said they will resort to this measure because of the change.
    • 43% of older people in England who will lose their winter fuel payment said they were planning to wear outdoor clothes indoors, for example hats and coats. 15% were already planning to do this and now an additional 28% said they will make this change, which they hadn’t expected to do before losing the winter fuel payment.

    In short then, Labour slashing the winter fuel payment is going to force people into these unconscionable situations this winter. Of course, it’s little wonder nearly half of people its denying the payment to think it will harm their physical health. That’s because, the rest of the responses highlighted that many of these will struggle to afford to heat their homes.

    Given all this, more than 500,000 people signed a petition demanding the government reverse its policy. A coalition of groups headed to Westminster to deliver these to the government’s front door.

    Winter fuel payment petition goes to Westminster

    On Wednesday 16 October, campaigners took the signatures to Downing Street and the Treasury:

    These were from a series of combined petitions and open letters by charities and campaign groups including Independent Age, 38 Degrees, Silver Voices, and Organise:

    Chief executive of Independent Age Joanna Elson said that:

    Tying the Winter Fuel Payment to Pension Credit now will see far too many older people fall through the cracks. Pension Credit still has a stubbornly low take up and in addition there is a large group of older people living just above the entitlement’s threshold, sometimes by just a few pounds. People in this situation will now have this vital money taken away from them. That’s why we are heading to Downing Street to urge the UK Government to protect the payment for those in later life living on low incomes.

    With winter around the corner, now is the time to bring older people on a low income back in from the cold.

    Matthew Mcgregor, CEO of 38 Degrees echoed this, stating that:

    The message to the Government today is clear: don’t let vulnerable people fall through the cracks of our economy this winter

    That’s why so many hundreds of thousands of us have come together to demand that Chancellor Rachel Reeves doesn’t scrap winter fuel payments for struggling pensioners, just as energy bills have risen again.

    This petition hand-in should be a wake up call for the Prime Minister and Chancellor. Use this Autumn Budget to prove whose side you’re on.

    Campaign groups come together to call Labour out

    Other organisations also supported the hand-in. This included the Warm This Winter campaign:

    Fuel Poverty Action’s Jonathan Bean recorded a message to politician outside of Parliament:

    Age UK showed its support for the campaign on X:

    The End Fuel Poverty Coalition, and Uplift were also among the groups backing the petition hand-in.

    Half a million voices the government cannot ignore

    Cornwall resident 68-year old Robert Trewhella was there to hand in the box of signatures to Downing Street. He said that:

    It’s not right that so many older people will have money taken away from them this winter. My State Pension puts me just £2 above the Pension Credit threshold, meaning I will lose the Winter Fuel Payment. I only have a small income and in the past the extra money has helped keep my flat warm.

    Hopefully the UK Government listens and decides to protect the Winter Fuel Payment for older people that can’t afford to lose it. I am worried about the winter ahead, I hope it doesn’t get too cold as I don’t think I will be able to turn the heating on often

    Fuel Poverty Action’s Jonathan Bean summed up the callousness of the government’s move over the winter fuel payment:

    Over half a million people have joined the call to axe this cruel policy – and no wonder. The health and lives of low-income pensioners will be put at risk. As a direct impact of this policy, people will resort to switching off the heating and trying to survive in cold, damp homes.

    He expressed how he’d seen the devastating impacts of rising prices and unaffordable energy bills first-hand within his own family:

    I know only too well the dangers of cutting vital energy support: my own uncle switched off his heating when prices first rose without telling his family. He ended up in an ambulance with hypothermia and then spent a month in hospital and two months in respite care.

    So, Bean lambasted Labour’s decision which will push more pensioners into fuel poverty this winter:

    In an attempt to justify their plans, Labour are pointing to the £22bn ‘black hole’ in the country’s finances. But pushing vulnerable pensioners into it isn’t the solution. Tory economics got us into this mess, and Labour should be moving towards a new kind of economics that puts people before profit.

    Instead, he articulated that the government should guarantee the right to free energy for all:

    If this government wants to show that it listens to the concerns of ordinary people, they need to scrap this cruel policy and focus instead on fixing our broken energy pricing system and protecting everyone with an essential energy guarantee that keeps us all warm and safe this winter.

    Needless to say, no one should be risking their health or freezing to death in their homes this winter. However, the government slashing the winter fuel payment is set to do just that for hundreds of thousands of pensioners.

    Now though, more than half a million people have raised their voices to demand it stop its ruthless policy – and on Wednesday, the coalition of campaigners made sure that’s 500,000 plus voices it cannot ignore.

    Feature image via X – Fuel Poverty Action

    By Hannah Sharland

  • A report on the South London scheme that put job advisers into NHS hospitals is stacked with statistical biases. That being the case, it means that the positive findings from it are largely bogus. Of course, this happens to be the very same programme Department for Work and Pensions (DWP) boss Liz Kendall has lauded for its employment “results” and “dramatic” mental health outcomes.

    As it turns out then, the existing scheme Kendall has been parading as a pretext for rolling out job advisers for patients with “serious” mental health problems is not the resounding success the DWP secretary has quite made it out to be. Crucially, if anything, it pours cold water on the egregious notion that work is always good for people’s mental health.

    Of course, it’s not really surprising – since the Canary and others have repeatedly warned DWP-NHS integration like this is a dangerous and flawed idea. However, this bunk evidence should be another nail in the coffin of Kendall’s alarming project to put job advisers into more healthcare settings.

    DWP mental health ward infiltration

    On Wednesday 16 October, the BBC published a puff piece on Kendall’s plans to post job advisers in hospitals.

    Initially, the BBC gave over the entire article to Kendall, in what it boasted as an “exclusive interview” with the DWP boss. Presumably due to rightful backlash against the scheme and odious piece of fawning stenography, the Canary noticed it has since updated this. Now, the article carries quotes from disability charities challenging it.

    This included Scope’s executive director of strategy James Taylor, who underscored that:

    We need to see evidence that work coaches being sent to visit seriously ill people works, and doesn’t cause distress.

    Well, the Canary went in search of this so-called “evidence” for the DWP mental health plans. And let’s just say to start that it’s not exactly solid proof for Kendall’s claim to the BBC that:

    the results of getting people into work have been dramatic, and the evidence clearly shows that it is better for their mental health.

    Kendall and the DWP are basing this on a programme that South London and Maudsley NHS Foundation Trust have had in place.

    So, we dug out an evaluation of the Work Well scheme there. Researchers from mental health organisation the McPin Foundation carried out the independent analysis of the scheme. It’s from 2020, was updated in 2022, and reviewed three years of the programme from 2017 onwards. Obviously, it’s likely this is – at least in part – the ‘results’ Kendall was crooning over. However, they’re hardly anything to write home about. In particular, it found that out of 551 participants:

    • 28% (152) found employment by the time the project ended.
    • 25% (140) were in paid employment when it finished.
    • 10% (57) had stayed in this job for at least six months.

    Far from the “dramatic” results Kendall claimed then.

    Sly statistical selection bias

    By contrast, in terms of mental health outcomes, ostensibly, the programme did help. That is, until you scratch a little under the surface. This was where some sly statistical gymnastics came in to tell the story the programme clearly wanted to project.

    The report measured participants’ anxiety and depression over three separate periods in time. Notably, it found from the start of employment they both decreased at each time point. The evaluation isn’t completely clear here. It says it assessed people at three months on and then further at six, nine, and twelve months. Of course, it gives only two extra time points after the baseline, yet it doesn’t clarify which of these points in time they actually were.

    Furthermore, there was a ‘but’, and a significant one at that. Specifically, the evaluation applied this to only the 57 participants who were still in work at six months or more. In other words, it didn’t assess the mental health of nearly 500 participants on the scheme. These were people it said had “disengaged” or left the project altogether.

    What we don’t know then, is why those people dropped out or drew back their engagement with it. And of course, it’s very plausible that some of these people did so because the scheme – and work itself – was making their mental health worse.

    Basing results solely on the people who maintained employment beyond six months in itself is clear selection bias.

    DWP mental health plans: ignoring people who dropped out

    The report goes to little effort to find out why a) some people didn’t stay in employment, and b) the impact the programme had on their mental health. It simply noted that some had resigned, others had their contracts come to an end, a few were dismissed, and one hadn’t passed a training test.

    Nor did it really assess the mental health of those that participated in the scheme, but didn’t start a job, or dropped out altogether. It’s blatant selection bias to only look at the people staying in their jobs for six months or more – not least because it’s people with less severe mental health problems who are more likely to be able to work anyway.

    On top of this, the report conducted in-depth interviews with some participants. From these emerged a swathe of glowing praise for the programme.

    However, confirmation bias struck here again. For starters, out of a pool of 551 participants, it did these with only eleven of those. Once again, these were evidently among those who’d stayed engaged with the programme. At the time of the interviews, five of these were volunteering, three working, and one was studying part-time.

    Here too then, it ignored the fact that people who’d maintained contact with the scheme were more likely to have had positive experiences with it. It didn’t appear to interview people who’d dropped out of it, or attempt to find their reasons for doing so.

    The report also solicited the views of eight Work Well staff, and six stakeholders from organisations that referred or took people on from the project. Unsurprisingly, they too largely hailed the programme.

    Individual Placement and Support (IPS): more dodgy ‘evidence’

    Besides all these issues, the background to the report made the bold claim that:

    Individual Placement and Support (IPS) models for people with mental health problems are well evidenced

    Despite the brazen assertion, it doesn’t actually reference any of the said evidence for this. Much further down the report it states:

    Individual Placement and Support (IPS) models in the UK have achieved modest outcomes for people with severe mental health problems (Howard et al, 2010), where 13% of IPS clients retained competitive employment after one-year follow-up. In another UK study, 35% of people who saw an employment specialist within a mental health team after one year follow up (Marwaha et al, 2014).

    So, that would be, barely over a tenth in one instance, and little over a third in another one in employment a year after participating in the scheme. Of course, the year on review doesn’t exactly show long-term retention. Aside from that, these studies are now over a decade old. None of this exactly screams “well evidenced”.

    Yet funnily enough, this is exactly the guff claim its own creators have made about it too. The Canary’s Steve Topple has pointed out the problems with this before, highlighting that:

    The creators of IPS claim it’s evidence-based. However, one study found IPS only got people into work for a limited time. After six years, there was not a significant gap in employment outcomes between IPS and people who had standard psychiatric treatment.

    Additionally, he underscored another more recent study that found:

    Moreover, the success of IPS in the UK is questionable, too. Between January 2016 and March 2019:

    • 31% of IPS participants started a job.
    • 22% kept that job for at least six weeks.
    • 12% kept that job for at least six months.

    Hardly a resounding success.

    Most significantly though, these employment statistics tell us absolutely nothing about the mental health impacts of IPS on participants. Why? Because the studies haven’t measured it. This is, of course once again, precisely the problem.

    Care not job advisers in hospitals

    Ultimately then, the report doesn’t actually give us an accurate picture of participant’s experiences of the programme. So, Kendall’s claim that “the results have been dramatic” is quite a stretch at best. At worst, it’s wilful manipulation of reality.

    This is because, while this evaluation might be flawed, as we previously pointed out, other DWP reports HAVE shown the devastating impacts of linking work as a health outcome. And the picture they’ve painted has been one of harm – of actively making people sicker – and putting their lives at risk.

    The simple fact is, people accessing mental health services in hospitals categorically do not need DWP job advisers sticking their noses into their care.

    The government is pushing these DWP mental health plans, knowing full well it’s evidence for doing so is self-fulfilling bullshit. It’s hard to see it as anything less than the eugenicist urges of a DWP hell-bent on coercing mental health patients into work.

    However, people living with serious mental health problems do not need career advice. They need compassion and care. But that’s the two things that Kendall, Starmer and company hardly have a single fiber of between the lot of them.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • Jeremy Corbyn joins tens of thousands showing support for the Gaza Sunbirds and their goal to support Palestinians facing Israel’s brutal assault. On a bike ride through Caledonian park, the former Labour leader, recently re-elected independent Islington MP and avid cyclist meets with Karim Ali, co-founder of the Gaza para-cycling team. Corbyn sings Bob Marley with him, as well.

    Discussions around a year of current attacks, the movement against Israeli occupation and the Gaza Sunbirds’ courageous aid missions prompt reflections on the role of cycling, mobility justice and the relevance of wisdom from figures like Bob Marley in the conversation about Palestine.

    Israel’s actions are “disgusting”

    “First of all, everything that’s happening in Gaza is unbelievably disgusting…50,000 lives gone” said Corbyn.

    With a rising death toll as a result of Israel’s current assault on Palestinians and Lebanese people, 99,500 injured, nearly 10,000 missing and 1.9 million displaced, the pair look for hope in a positive shift in public sentiment over the last twelve months.

    Corbyn said:

    A lot of the people that have been protesting around the world, including a lot of those students in the U.S.A. have probably never given Palestine or Gaza a thought before and they did come out and do something. We had almost a million people in Britain on the big demonstration to the U.S. embassy. Extraordinary numbers.

    A long-standing champion of social justice, Jeremy has consistently advocated for the rights of the Palestinian people throughout his political career.

    He has played a pivotal role in various campaigns such as “Stop the War,” the Boycott, Divestment, Sanctions (BDS) movement and, most recently, an Independent Alliance group with other independent MPs opposing Israeli attacks on Gaza.

    His bike ride with Karim prompts reflections on the significance of complimenting this type of action with celebration of Palestinians and their right to self-expression. Corbyn said:

    It’s important that there be this cultural expression of Palestine and Palestinian people because anyone who’s not very involved or informed would say the Palestinians are always victims. Yes, of course they’re victims. But they’re also people with imagination, with ideas, with literature, with poetry, with music, with art. We need to see and hear that as well.

    Corbyn sings Marley, discusses disability, and more

    Topics like this are steered through seamlessly on the ride through Caledonian park, breaking briefly for a singalong to Redemption Song by Bob Marley, a shared idol for the two. They discuss amputations in Gaza as a result of attacks on the strip, life for those affected and how bikes can bring independence. As Corbyn noted:

    Mobility comes in many forms. It can come through depending on the condition. It comes from a wheelchair. It can come through crutches for walking or the liberation of cycling.

    These conversations are close to the hearts of the Gaza Sunbirds and its 20 athletes who have all lost limbs due to previous Israeli aggressions.

    The para-cycling team were forced to give up their training regime after 7 October 2023 and instead, have been distributing over $280,000 USD worth of food and supplies across Gaza supported by their funding partners Amos Trust and ASC ONG.

    As well as this, their captain Alaa al-Dali was able to realise the dream the squad were founded on by flying the Palestinian flag on the world sporting stage at the second biggest international para-cycling event last month.

    He was evacuated to race at the Zurich UCI World Championships. Seeing Alaa succeed on this incredible journey, Karim affirms, has been a ray of hope as he asks Jeremy to share his own hopeful symbol. Corbyn noted:

    To me it’s the inspiration of people who move between societies and then somehow or other, not just survive, but thrive, and their communities thrive…they did it because that’s what they believed in.

    Watch the full video below:

    By The Canary

    This post was originally published on Canary.

  • A tranche of reports the Department for Work and Pensions (DWP) buried – including one for nearly two years – has exposed how it has been utterly failing chronically ill claimants. In particular, DWP PIP health assessments are massively stacked against people living with chronic health problems. Not only this, but the DWP’s processes have been actively making claimants’ conditions worse – while regularly denying people disability benefits altogether. Notably, the DWP’s own reports have shown just how sorely not fit for purpose the system is for those with fluctuating health conditions like myalgic encephalomyelitis (ME/CFS) and Ehlers-Danlos syndrome (EDS).

    DWP PIP: reports sat on by the Tories as Labour sits on its hands too

    The Canary’s James Wright and Steve Topple have both highlighted a cache of 30 new DWP reports. Labour dumped these out all at once on Monday 7 October. The government has claimed the previous Tory administration sat on these instead of publishing them.

    Obviously, the timing and sudden glut of reports is highly suspect. It’s wholly plausible it published these like this on purpose. Specifically, this was to evade scrutiny, hoping the news cycle would move on before anyone could get their teeth into them.

    So, it’s hardly surprising that some contained damning evidence of the harm the DWP’s benefit system is causing to chronically ill and disabled people.

    Crucially, three of these reports had huge implications for prospective and current claimants living with certain chronic health conditions. In particular, chronic illnesses like myalgic encephalomyelitis (ME/CFS), and Ehlers-Danlos Syndrome.

    ME is a chronic systemic neuroimmune disease marked by the hallmark symptom post-exertional malaise (PEM): a worsening of symptoms after physical, mental, social, or emotional exertion. Meanwhile, EDS is a group of connective tissue disorders in which collagen doesn’t work. It’s characterised by joint hypermobility, skin hyperelasticity, and tissue fragility.

    Excluding people with fluctuating chronic health conditions

    The Canary’s Steve Topple has already summed up the gist of one 2022/early 2023 report titled:

    Barriers to Accessing Health Support for PIP, NS [new style] ESA, and UC Claimants

    In short, it centred round how the DWP can ‘support’ claimants to access NHS treatments. Topple highlighted some glaring problems with this, which you can read about here.

    Besides this one, there was another report called:

    Experiences of PIP applicants who received zero points at assessment

    It involved a series of interviews between Feb and March 2023. This was with 29 people that the DWP had awarded zero points to in their PIP applications. Disability News Service’s (DNS) John Pring has written about this report. As he articulated, the basic thrust of this was how once again, the entire process and outcome was “degrading” and left people feeling “numb” and “broken”.

    Finally, a third report went by the heading:

    The Impact of Fluctuating Health Conditions on Assessment

    It entailed a survey of 297 people with fluctuating health conditions. A further 46 chronically ill and disabled people participated in a four-week diary study, with 49 more involved in in-depth interviews. Overall, this one explored experiences of people living with fluctuating conditions and disability benefits.

    For instance, it highlighted some obvious but important things about the application and assessment processes, including:

    • That the long and complex forms are “daunting” and “draining” for chronically ill claimants, and can cause flare ups in their health conditions.
    • How time limits are wholly unsuitable for people with unpredictable fluctuating conditions that can vary in severity.
    • The forms and assessments asked all the wrong questions. These were often too binary, and focused on fixed points in time. They posed questions like “can it be done” rather than “can it be done safely” without knock-on impacts.

    It also drew attention to the fact that assessors often wouldn’t believe claimants lived realities. This fed into the feeling that assessors would use people’s so-called ‘good days’ against them – which we know they definitely do in practice.

    However, a key take away from all three was that DWP has set up the PIP assessment process to exclude people living with fluctuating chronic health conditions. Worse than that, participants in each underscored how the DWP is actively harming patients with them.

    Both ME and EDS have a long history of psychologisation, misdiagnosis, underfunded research, stigma, and abuse. What’s more, the DWP has long been at the forefront of all this in its drive to coerce patients with them into work. And what was clear in these reports was that the DWP doesn’t understand these conditions, or intend to support people living with them either.

    A minefield for ME/CFS and EDS patients

    Illustrating this directly, the reports included some truly abysmal accounts from people with these devastating health conditions.

    One was 40-year-old John (not his real name) who lives with ME/CFS. The DWP’s PIP zero points report painted the stark picture of his experience applying for the disability benefit. It described how John is bedbound all but half an hour a day, and:

    unable to read, watch TV, listen to music, or eat on his own.

    Yet despite the fact John appears to live with severe ME, the DWP awarded him zero points. Accordingly, it denied him PIP altogether.

    What’s more, the DWP assessor forced John to hold his assessment over two separate half hour sessions over the telephone. Apparently, it split this to “accommodate his fatigue” – but didn’t let him reschedule these when he was:

    feeling particularly drained and unwell during his assessment… as he had done so once already.

    John’s account suggests he’s hypersensitive to sound, as is the case for many severe ME patients. Given this, it’s likely the telephone appointments would have sent John into a severe crash.

    Additionally, his case study also articulated the inaccessibility of the complex, lengthy PIP application form as well. John took three months to complete this due to the PEM impact of spending five minutes per day doing voice dictations to fill it in.

    In short then, not only did the DWP determine John was ineligible for PIP, but it also made his health worse in the process.

    DWP PIP process actively harming people with ME/CFS

    Naturally, John was far from the only person living with complex chronic health conditions the DWP had denied disability benefits to either.

    The fluctuating health conditions report introduced Aditi – a young woman living with fibromyalgia, hypermobility, ADHD, and dyslexia. Of course, Aditi’s so-called hypermobility – an unhelpfully non-specific term – is probably hypermobile EDS.

    The report doesn’t elaborate, however, given that health professionals often misdiagnose hEDS as fibromyalgia, it could very well be the case. There’s also increasing evidence of the crossovers between neurodivergence and chronic health conditions like EDS and ME/CFS.

    In a diary spanning four weeks, Aditi recorded her physical and mental health. For the most part, she rated it poorly, and had difficulty carrying out daily self care activities due to constant pain and fatigue. In one entry, she penned that:

    I’m not even eaten yet. I’ve not left my bedroom today. I’ve just been trapped in my body and brain.

    Aditi had applied twice for PIP, and both times the DWP had rejected her.

    Then, a case study in the barriers report highlighted Caroline’s story of applying for PIP. It stated that she lives with severe arthritis and chronic fatigue.

    Of course, it’s unclear if this means ME/CFS – but it’s plausible given the way the report seems to use “CFS” and “chronic fatigue” interchangeably. It was only on her second attempt that the DWP awarded her PIP. Unsurprisingly, the initial rejection adversely impacted Caroline as well:

    The experience of being denied support despite the profound difficulties she faced had a severe impact on Caroline’s mental health at the time.

    So, three SEPARATE reports depicted the damage DWP PIP assessments are doing to people living with fluctuating health conditions like EDS and ME. Of course, this is no coincidence – nor an accident either. As the Canary’s Steve Topple pointed out about the barrier report, there’s nothing ‘inadvertent’ about it.

    This is the DWP making people physically and mentally sicker by design.

    DWP still stuck in the past

    What’s more, the reports themselves – and the conclusions they drew from these findings – were also particularly problematic.

    For one, they were emblematic of a key problem they themselves had highlighted. That is, that the DWP is completely out of touch with these fluctuating chronic illnesses.

    This was glaringly apparent in the terminology multiple reports used for conditions like ME/CFS and EDS.

    Instead of the long-established patient community preferred term myalgic encephalomyelitis (ME) – reports typically used ‘chronic fatigue syndrome (CFS)’. Of course, it’s not entirely surprising they did this, given the corporate media still routinely call it this too.

    Throughout though, the reports lazily conflated “chronic fatigue” – a symptom of many different health conditions, with CFS. This perfectly underlines one of the major bugbears ME patients have with this misleading diagnostic term.

    Aside from massively misrepresenting it as a fatigue-based condition, CFS regularly gets confused with chronic fatigue as the symptom, when it’s its own distinct disease. In 2023, DWP researchers should know this – yet in at least three separate reports, it makes this oversight.

    The fluctuating conditions report was among the most illustrative of this. Forget CFS, it simply stated “chronic fatigue conditions”, which presumably meant lumping ME amidst multiple health conditions with fatigue symptoms.

    Archaic diagnostic terms in DWP PIP processes

    On top of this, it dumped these patients into an umbrella category spanning mental health and other long-term health conditions. In fact, the appendix breakdown of conditions revealed it was actually much worse than this.

    If we’re to assume participants living with ME/CFS fell under its hugely problematic “chronic fatigue conditions”, these didn’t actually even go in the “long-term health condition” categorisation at all. They would have come under “chronic pain or chronic fatigue”. Again, this was a broad and non-specific classification that would encompass many entirely unrelated and considerably different conditions.

    Similarly, reports used out-of-date terms for EDS as well. In the PIP Zero Points report produced in 2023, it adopted the outdated diagnosis ‘Joint Hypermobility Syndrome’ (JHS). This was reclassified as hypermobile EDS or a type of hypermobility spectrum disorder (HSD) in 2017 – yet six years on, DWP researchers are still using this archaic term.

    Worse yet, the barriers report – which DWP researchers also completed in 2023 – didn’t even bother with specific connective tissue disorder conditions. It simply listed ‘hypermobility’ in the annex – a broad symptom, rather than any particular condition in and of itself. Again though, much as it had with CFS and chronic fatigue, it used this interchangeably throughout the report with JHS.

    Of course, this is precisely the problem. The DWP doesn’t understand or differentiate these and other chronic illnesses. It’s demonstrative of the broader unwillingness of the department to recognise them and the daily realities for patients.

    Skirting round the real problem

    However, the anachronistic terms were only part of the problem. It was what the reports recommended that really typified how DWP PIP fails chronically ill people – not least their incessant insistence that the processes themselves were the main issue, rather than the blatant systemic ableism they were documenting.

    Ultimately, after all their findings, the best the reports could propose boiled down to:

    • Enhancing the questions asked at assessments to better take account of fluctuating health.
    • More time and flexibility in the application and assessment process.
    • Upskill health disability assessors and other staff. This is mainly about improving disability and awareness training about fluctuating conditions, and giving staff a guide to work from.
    • Give claimants a guide and more support help them describe their conditions better. Because evidently, claimants failing to put their daily lived reality into words is the problem here.

    One especially vital oversight was the fact that it emphasised ‘improving’ all these processes. However, if you don’t also change the corresponding way the DWP awards points, it’s, for want of a better word, pointless.

    Another issue was that the barriers to health support report seemed to be one big puff piece for NHS Talking Therapies. This is the already well established practice of putting job coaches in therapy settings.

    Needless to say, this glorified cognitive behaviour therapy (CBT) – think yourself better type guff – heralds more harmful psychologisation for people living with ME/CFS, EDS, and other chronic health conditions.

    Funnily enough, Labour is already seeking to take this approach further to hospitals more broadly. As the Canary pointed out, it’s all based on a hospital that’s already doing it.

    That hospital just so happens to be headed by a notorious psychologist – Simon Wessely – who has pushed harmful psychologising treatments for people living with ME. Not to mention he was also central to promoting the flawed PACE trial part-funded by the DWP. It’s ostensible aim looked to be at least partly about aiding the department’s back-to-work coercion agenda.

    And notably, in one telling paragraph that report states:

    mental health support should be a priority, even where no mental health issues are known. The impact of condition management can be detrimental to mental health, whilst declining mental health can make it difficult to maintain condition management

    In other words, it’s psychologising by any other name.

    Labour will lap these up

    So ultimately, the reports showed that the DWP’s benefits system is making severely chronically ill ME/CFS and EDS patients – and people with other similarly fluctuating chronic health conditions – sicker. At the same time it’s doing that, it’s regularly denying disability benefits to them.

    These are chronically ill and disabled people that are bedbound, in constant pain, and entirely unable to look after their own daily care needs. Yet, as far as the DWP is concerned, they’re also the people who can and should be in work. It almost goes without saying then, Labour is going to lap that up.

    Quite obviously, this tinkering around at the edges approach will suit the new government down the ground. It means the DWP – under new management – can continue forcing sick and disabled people into work. It simply has to slap on a few half-assed reforms like these to feign inclusivity.

    All the while, it can avoid the real problem these reports and others have repeatedly shown. That it’s the DWP’s toxic systemically ableist culture that’s harming chronically ill claimants and leaving them behind.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • The Department for Work and Pensions (DWP) sat on a report for nearly two years that evidenced how its own processes quite literally make claimants’ health worse. It comes just as a coroner has flagged the department’s actions during the inquest of a claimant who lay dead for nearly three years, alone in her flat.

    DWP: buried reports, but not surprising news

    As the Canary’s James Wright wrote, the new Labour Party government has released a cache of 30 DWP internal reports. The government claims the previous Tory administration sat on these instead of publishing them.

    One report that already stands out is called:

    Barriers to Accessing Health Support for PIP, NS [new style] ESA, and UC Claimants

    The thrust of this report is about how the DWP can ‘support’ claimants to access treatment in the NHS. It involved interviews with 76 claimants during late 2022/early 2023. As an idea, this is problematic for several reasons:

    • NHS services for chronically ill and disabled people are already broken.
    • The DWP integrating itself with the NHS is a recipe for disaster, as the Canary has repeatedly documented.
    • DWP services are already stretched at best – and at worst, actively working against claimants – without more points added to the process.

    Failing processes highlighted again

    However, it was the idea of DWP processes themselves which really stood out – not least how the claimants it interviewed viewed them.

    As the DWP report itself says, it

    highlighted those aspects of the claims journey that might adversely impact claimants’ health…

    Support should consider the elements of the claims journey which are inadvertently impacting claimants’ health in a negative way too. For example, difficulties participants described around the complexity of the application form.

    Linked to this, claimants stressed that they would not want any support offer to increase the complexity of the application process or add additional stages to the journey, which was already felt to be cumbersome.

    The problem with this statement is that there’s nothing ‘inadvertent’ about the DWP making claimants even physically sicker or increasing their mental distress.

    Prevention of Future Deaths reports

    Less than a year ago in November 2023, a coroner issued a Prevention of Future Deaths report to the DWP over one claimant’s death. As the Guardian reported:

    “Current DWP procedures may not be practical for those with mental health illness and can exacerbate symptoms,” she wrote. “I heard evidence that … the number of and length of DWP forms required to be completed can be overwhelming for someone with a mental health illness.”

    She also expressed concern over long telephone queues to speak to a DWP adviser, and added that “having to travel long distances for appointments can be detrimental for those with a mental health illness”.

    The DWP dismissed the coroner’s concerns. This came after numerous other coroners’ reports expressing the same sentiments. John Pring at Disability News Service documented seven other Prevention of Future Deaths reports in recent years – yet only took action on two.

    Yet the buried DWP report released by Labour proves that the department knows it makes people sick. It states:

    The application process itself was highlighted as lengthy and complex. This posed significant challenges, particularly for participants experiencing fatigue, poor mental health, memory difficulties, and learning disabilities. They described completing the form as physically and mentally exhausting, which for some led to heightened anxiety and, in some cases, had triggered periods of ill health.

    Laura Winham: a horrific case in point

    Only last week, a coroner was conducting the inquest into the death of Laura Winham. She was deaf and lived with schizophrenia. Laura may have died of starvation, and her remains went undiscovered for nearly three years. The harrowing inquest so far has heard of multiple failings by social services, Laura’s council, and police.

    However, one telling line in the Guardian noted that the DWP:

    sent Winham letters in February 2016 asking her to make a claim for the new personal independence payment, which replaced the disability living allowance (DLA).

    They explained that she may be required to attend a medical. Winham responded to Woking council expressing alarm. She wrote: “I have only lived on my savings and DLA benefit,” the court heard. These concerns were not passed on to the DWP…

    What the court hasn’t seemed to concern itself with is why the DWP failed to follow up on the fact that Laura, who must have been classed as a vulnerable claimant on its records, had not responded to its letters.

    The departments complete failure to enact anything remotely looking like safeguarding is a systemic problem – as the Canary and John Pring at Disability News Service have repeatedly documented. It seems the stress of the DWP’s processes compounded Laura’s situation and may well have contributed to her lack of money, therefore her death.

    DWP: intentional failures

    Yet here we are, with another internal report that shows the DWP is making people’s mental and physical health worse. And here we are, seeing that not only did the DWP not act on it – but it actively buried it.

    As the DWP report itself summed up, some research participants:

    wanted DWP to focus on ensuring claimants would feel better supported through the claims process itself. They suggested that if DWP truly wants to improve wellbeing, it should focus on improving its own processes first.

    Of course, none of this is by accident.

    The Canary has repeatedly reminded readers that it is the DWP’s job to make people NOT want to claim. By making life for chronically ill and disabled people as hard as possible, the government ultimately saves money.

    In 2016, the UN issued a scathing report on UK government violations of disabled people’s human rights. It noted that the DWP “processed rather than listened to or understood” disabled people during benefit assessments. The UN said these gave disabled people significant “anxiety” and “financial, material, and psychological hardship”.

    Nothing has changed in eight years; the DWP knows this, and it is unlikely anything is changing any time soon.

    Featured image via the Canary

    By Steve Topple

    This post was originally published on Canary.

  • If we are to create the new innovative industries that will solve problems and create innovative products, services, and jobs, then we need to include people with disabilities who have abilities, so they can participate and contribute their diverse experiences, knowledge and skills. Diversity Equity Inclusion (DEI) is a great initiative because it gives people…

    The post People with disabilities also have abilities. They want to contribute appeared first on InnovationAus.com.

    This post was originally published on InnovationAus.com.

  • A new independent media outlet, London Centric, has broken the news that an NHS trust is charging people to hire wheelchairs – showing that creeping privatisation of healthcare is never too far away.

    London Centric: quite a scoop on the NHS

    Former Guardian and Buzzfeed journalist Jim Waterson has recently launched London Centric: a new media outlet focusing solely on the capital. Now, the Canary and Jim Waterson have history – but to be fair to him, London Centric looks like a good project. Not least this is because it’s already highlighted a story most of the corporate media would not bother to investigate.

    As Waterson wrote:

    Rather than have a stock of hospital owned-and-operated wheelchairs King’s College Hospital in Lambeth has installed a Boris Bike-style hiring service run by Wheelshare, a private healthcare business. Unless patients have come in an ambulance, people arriving at the hospital and unable to walk to A&E are pointed towards a hiring dock full of wheelchairs unlocked by a credit card machine.

    Although the first four hours are free, after that each wheelchair costs patients £2/hour, with the cost being automatically charged to the user’s credit card. King’s has some of the worst waiting times in country, with some patients waiting up to 12 hours to be seen in A&E.

    So, not only is the NHS in a dire state – with chronically ill and disabled people disproportionately affected – but now some trusts want to charge these same, marginalised people to have accessible healthcare.

    NHS privatisation is a myth, though – right?

    RIGHT?

    Refunds, blah, blah, blah

    Meanwhile, you can’t launch a new media outlet without the corporate media ripping you off. So, enter the Telegraph to cover Waterson’s scoop. It did give credit to him – but failed to link to his original piece. For shame. We all love a good backlink, after all.

    What the Telegraph did note, though, was King College’s response to Waterson’s story. It said:

    Wheelchairs are available for patients to access free of charge at King’s College Hospital for four hours, after which each additional hour or part of it costs £2. The scheme helps ensure that every patient who needs a wheelchair can find one when they arrive at hospital.

    Patients using a wheelchair who experience longer waits for treatment are able to have these costs refunded by contacting Wheelshare directly.

    London Centric found that refunds were not advertised anywhere in the scheme. Surprise, surprise.

    Overall, the NHS charging for wheelchairs is just another thin end of a wedge when it comes to the degradation of healthcare in the UK.

    NHS wheelchair charges: privatisation by stealth

    Who remembers when TV used to be free in hospital? Well, you only would if you stayed prior to 2004. Free eye tests were also a thing in the 1960s – as were prescriptions.

    All this coupled with sky-high waiting times show an NHS buckling under the strain of corporate capitalism – and that’s just the experience if you’re non-disabled. Chronically ill and disabled people face systemic barriers in accessing healthcare. Now, Kings want to make that even more difficult.

    As one person summed up to London Centric:

    You can’t call an ambulance because of the waiting times. If you get to the hospital in a car you need to pay for transport while you wait in A&E. There’s literally a wheelchair shortage in a hospital

    And now, you’ll have to pay for that, too.

    Whether or not this constitutes discrimination under the Equality Act 2010 remains to be seen. However, what it does constitute is managers privatising the NHS via stealth after politicians have starved it of money. And with another trust in London also rolling this out, it seems that wheelchair charges may be the shape of things to come.

    Featured image via the Canary

    By Steve Topple

    This post was originally published on Canary.

  • New articles in the Times and the Guardian look to be little more than a cut and paste job from a government press release. What were both servile client media lapdogs banging on about on behalf of the new Labour cabinet ministers on the block? Well, that would be yet another back-to-work scheme, courtesy of the Department for Work and Pensions (DWP) tightening its grip further over the NHS. This is by putting job advisors in hospitals, via DWP NHS co-working.

    Most significantly though, the pair of outlets missed something important about the new plans. Crucially, this vital detail regards a notorious psychologist and his harmful model for trivialising patients living with certain chronic physical illnesses: in particular, myalgic encephalomyelitis (ME).

    DWP NHS co-working: Labour’s plan for job advisors in hospitals

    On 3 October, both the Guardian and the Times announced the Labour government’s new scheme to post job advisors into NHS hospitals. Of course, this is part of its broader plans for pushing long-term sick people back to work.

    So once again, the government is blurring the lines between the DWP and the NHS. Obviously, its latest ploy will mean people medical support for mental health conditions will face the prospect of employment advisors telling them to get a job to fix their problems.

    However, the timing of the two articles also revealed something else. That is, the extent of the mainstream media’s complicity in manufacturing consent for the government’s back to work agenda. For one, it seems that the outlets plucked it all straight out of a government press release.

    Firstly, the phrasing in parts of the two articles are almost carbon copies of one another. Compare and contrast, from the Times:

    Liz Kendall, the work and pensions secretary, and Wes Streeting, the health secretary, want to expand a model in place at the Maudsley hospital in south London, which uses employment advisers to offer its patients help looking for work, writing CVs, doing interviews and linking them with local employers.

    And from the Guardian article:

    Wes Streeting, the health secretary, and Liz Kendall, the work and pensions secretary, are understood to want to expand a model used at the Maudsley psychiatric hospital, in south London, which deploys employment support, such as job seeking, CV writing and interview training.

    Then, there’s the fact the outlets both use some of the very same quotes. And of course, the two articles went out on the exact same day. Parroting a strategically-timed government press release then? It seems extremely likely.

    Obviously, the Guardian counterweighted some of the cut and paste back-to-work rhetoric with commentary from disability charity Scope director James Taylor. So, it at least tried, or attempted to appear like it’s pushing back against the new Labour government for maligning chronically ill and disabled people out of work. We’ll give it that much – though it hardly makes up for the damage uncritically promoting this will do.

    Work as a health outcome guff again

    Predictably however, both articles were full of the kind of perverse, social security claimant-shaming rhetoric we’ve been seeing the corporate media ramp up in recent months.

    There was the work as a health outcome malarkey, naturally. Primarily, this came in a quote from the chair of South London and Maudsley NHS foundation, Norman Lamb, who said:

    every clinical team across the country [should be] thinking employment is a legitimate and important goal of recovery for people

    Next came more disabled claimant-bashing. He followed it up with the fact the scheme was:

    not about forcing people into employment or doing anything that’s not right for them

    But instead about:

    recognising the importance to people of the dignity and self-worth that employment brings

    So, shaming people not in work as having no dignity, then? Got it. And if that sounds familiar, that’s because everyone from the new PM to the NHS director of mental health have been bleating on with this ableist dogwhistle.

    Largely then, both the right-wing Murdoch mouthpiece the Times, and liberal outlet the Guardian are serving as dutiful stenographers for the government’s bid to coerce chronically ill and disabled people into work.

    Most notably however, neither paper picked up on one key detail about the job advisors in hospitals scheme the likely government press release was lauding. This was in relation to the fact that it was a model from Maudsley psychiatric hospital.

    The hospital of psychologist Simon Wessely

    Crucially, what the Guardian, and the Times failed to mention about this DWP NHS co-working is that this happens to be the hospital where a notorious psychologist practices, and is a non-executive director.

    This would be one Simon Wessely – whose name is only all too familiar for people living with myalgic encephalomyelitis (ME) – and not in a good way. He’s the infamous psychologist who supported and shaped the flawed PACE trial. This was, as the Canary’s Steve Topple has previously explained:

    a study, part-funded by the UK government, into treatment for ME. It found that people could recover from the disease by having cognitive behavioural therapy (CBT). In other words, people living with a very-real, viral-based illness should just ‘think themselves better’. Essentially, the trial pushed the notion that the disease was part-psychosomatic or ‘made up’ by patients.

    Wessely was central to pushing out the PACE trial through the media. And as I’ve reported:

    it was also Wessely and his band of biopsychosocial science chums who first started tarring ME as something psychological. Specifically, in the 1980s, he and his colleagues began pumping out articles that promulgated the cognitive behavioural model of ME.

    This entrenched its psychosomatic origin and pushed cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as the dominant treatment methods.

    Wessely did all this, and has a chequered history of psychologising physical illnesses to boot.

    Punching down on mental health patients for a past-time

    But that’s not all. In 2017, Theresa May’s government got him to review the Mental Health Act. He punched down on mental health patients in this, as Topple wrote on this too:

    In it, he pushed the emphasis on the patient leading what treatment they had; ‘self-management’ if you like. This seems good on paper. But in reality, it could leave patients vulnerable. Because if treatments don’t work, then the blame for this can be pushed onto the patient for ‘not trying hard enough’. This absolves medical professionals, and ultimately the system, of responsibility.

    In light of the fact this ‘employment support’ scheme at Maudsley is to help people with mental health problems, this clearly raises some red flags right away.

    Now, Wessely sits at the top of the NHS’s decision-making structure. In January 2023, the NHS appointed him to its board. In other words, Wessely has an outsized role calling the shots across the entire healthcare service.

    Moreover, South London and Maudsley NHS Trust itself is an infamous actor in this biopsychosocial scandal as well. This is the trust which runs the existing scheme across four boroughs in London.

    But, it’s also this NHS trust that has been central to promoting the harmful approach to ME. Specifically, with King’s College London, it has run the NIHR Biomedical Research Centre. There, the service has long pushed GET and CBT for people living with ME. Wessely is once again the common denominator in this too – since he’s a professor at the university. Moreover, he also works as a consultant psychologist at King’s College hospital, alongside Maudsley.

    Maudsley says ‘everyone can work’

    So, what does this scheme at the hospital right at the very centre of the ME psychologising medical scandal entail?

    It’s own website sums this up best:

    Work Well is a network of nine employment support teams based across South London and Maudsley.

    Our teams are embedded within clinical services, working closely with clinicians and therapists to improve the wellbeing and mental health of our clients.

    Firstly, it’s worth noting that this is different from the WorkWell work programme the Canary has previously written about. You can read more about that here.

    However, it still mostly appears to be a rehash and collation of other existing programmes. The two key ones it highlights is Individual Placement and Support (IPS), and NHS Talking Therapies. The Canary’s Steve Topple has written about both of these, and how they signal the DWP sinking its claws further into the NHS. Significantly, he highlighted how it was the Blair era Labour government who instigated this idea. However, it was the Tories that implemented it. So, it’s hardly a surprise that the new Labour government – with Blair’s health secretary Alan Milburn as its advisor – is also running with and making plans to expand on it.

    On this type of DWP NHS co-working arrangement, clinical psychologist Dr Jay Watts previously told the Canary that:

    This ‘back to work’ obsession places huge demand on patients to fulfil the neoliberal dream. One whereby health is linked to how much one can contribute to the public purse. But this is foreclosing the reality of long-term disability… So we must refuse the insistence that work is a meaningful health outcome in mental health services. We must instead recommit to patient (not government) centred care.

    Most tellingly of all then, the Work Well service describes its mission as:

    to support people in achieving their own career goals. We believe everyone can work, and people should have choice about the type of work they want to do, and when to do it.

    Of course, that pretty much says it all. The NHS trust has founded the scheme on the belief that “everyone can work”. And that’s precisely the problem – because that quite literally isn’t the case at all.

    What it suggests is that the service is there to push mental health patients – and chronically ill people with physical illnesses it psychologises – back to work. Vitally, it implies it will do so even if this means their health will deteriorate as a result.

    DWP NHS co-working: the end goal is capitalism

    If that weren’t alarming enough, the website talks of the services it provides to employers. Specifically, it offers a:

    free recruitment and workplace wellbeing service for local employers (Employ Well)

    Crucially, it states that it will support employers:

    with recruitment needs by matching your vacancies with our skilled, talented and motivated clients

    So, there we have it: this is what the so-called employment support is really all for. It’s designed to place mental health patients at the mercy of parasitic capitalist employers. The website helpfully gives two examples of the sorts of predatory corporations involved in this already. One was big polluter Gatwick Airport. The other is the profiteering Royal Mail Group, that makes big money for its bosses, while shitting on its employees.

    At the end of the day, this is what these types of so-called employment support schemes really boil down to. It’s what the PACE trial and the overall psychologisation of ME was always about too. Wherever the government can, it will push people into work, no matter the risks to their health. And all so it can deny people health-related social security while forcing them into the hands of vulture health insurance companies.

    Most of all, job advisors in hospitals is to the benefit of rich corporate capitalist extortionists everywhere. That is, companies ready to squeeze every last drop of profit from the chronically ill and disabled people these government schemes prey upon, relentlessly, and seemingly without remorse.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • The Department for Work and Pensions (DWP) will be putting more decisions on Personal Independence Payment (PIP) reviews into the hands of Jobcentre staff.

    It means that non-medically trained DWP staff could soon be presiding over whether the department will continue paying the disability benefit to some claimants.

    DWP PIP: changes ahead for award reviews

    The department subjects some people claiming DWP PIP to a review. This is to determine whether it will continue paying them the disability benefit, or whether it will increase or decrease the amount of it the claimant receives. How often and when the DWP carries this out will depend on the length of a claimants award.

    However, currently, the department has a huge backlog of these. Benefits and Work submitted a Freedom of Information (FOI) request to find out the numbers of DWP PIP claimants the department has outstanding reviews for. It stood at 392,000 at the end of May 2024.

    Based on the current rate the department is processing these, the outlet pointed out it could take nearly ten years to clear these. Given this, the DWP has been recruiting additional case managers to carry them out.

    On top of this, the new Labour-led DWP is making a series of changes designed to:

    increase efficiency and move cases through the system more quickly

    For instance, one measure to streamline the process it is introducing is to reduce in-person assessments. It will do so by allowing healthcare professionals to carry them out over the telephone instead. In addition to this, Timms also indicated the DWP has introduced a:

    change for customers with the most severe conditions, on the highest level of support, who now receive an ongoing PIP award which is only subject to a light touch review every 10 years.

    Currently, the DWP will implement a review after ten years for some claimants. This is for those where it has determined their condition is unlikely to change in the long-term. Evidently, these were the DWP PIP claimants Timms was referring here. However, he didn’t disclose quite what this “change” has or will entail for these claimants.

    Most notable among the new plans however, was Timms’ revelation that the DWP intends to give case managers more power over award reviews.

    Putting decisions in the hands of DWP staff

    DWP minister Stephen Timms revealed this in an answer to a parliamentary written question. Labour MP Katie White tabled this at the start of September. Specifically, he told White that:

    Where sufficient evidence/information is available, Case Managers can make decisions on reviews, avoiding the need for a functional assessment, which means many customers receive a decision faster.

    In other words, it means that DWP Jobcentre staff could soon be deciding whether a claimants PIP will continue or not.

    Timms suggested that this could only take place where these case managers already have sufficient health-related information to make this call. However, the fact remains that Jobcentre staff do not typically have medical training.

    Therefore, it means that non-medically trained staff will be interpreting the health evidence of DWP PIP claimants. Ultimately, from this, they will decide whether they will continue getting the benefit.

    Purportedly, Timms’ response implied the move is to reduce the need for full assessments.

    A broader shift for DWP PIP

    Benefits and Work has pointed out that the decision follows pilots that the department carried out. It did so between February and June this year. In these, case managers made decisions on claims, without PIP applicants attending full assessments.

    However, it should be noted that this was for new DWP PIP claims, rather than award reviews.

    As the outlet reported:

    In the first pilot the case managers only contacted a health professional for advice about a claim if they felt they needed to.

    In the second pilot the case manager had to consult with a health professional in every case.

    The claimant was not involved in the consultation in either pilot.

    As a result of the pilots, the DWP concluded that the system worked best if consultation with a health professional took place in every case.

    They also concluded that case managers “could potentially make more decisions without a health assessment if they had more information.”

    The next step in the project, which may be happening now, was to look at allowing case managers to also contact claimants to gather more information.

    Ostensibly then, Timms’ disclosure of the new DWP PIP plans for reviews seems to be part of a broader shift. In particular, this is to place more power into the hands of DWP Jobcentre staff. Obviously, this could be cause for concern.

    While this may mean the department forcing fewer claimants through lengthy, intrusive assessments, it may also mean more cases where the DWP wrongly denies PIP claimants the continuation of their benefits. If this is the case, more chronically ill and disabled people could soon be losing this vital benefit.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • Almost as soon as in office the Labour Party government picked on poor children with their refusal to reverse the two-child benefit cap, then they selected pensioners for a winter fuel allowance cut. Now, to their shame, Waltham Forest Labour council is picking on disabled people at the Markhouse Centre.

    Waltham Forest Labour: cutting disabled people’s services

    As the Waltham Forest Echo reported, the Labour council is closing a day centre for learning disabled adults:

    Waltham Forest Council is looking to close the Markhouse Centre and move to a system that prioritises “individual needs,” after it was found that it would cost almost £1.3million to restore the building…

    Councillor Louise Mitchell, the cabinet member for adult social care, said the authority was looking at shifting from a “building-based” approach to a “people-based” approach.

    If Markhouse was to close, then attendees would instead go to day centres nearer to where they live and where the council says they would be catered for.

    This centre has for many years provided activities for disabled people. On average, 28 people attend each day.

    The council say the cost of refurbishing the centre would be too costly, so 53 users are potentially subject to having this precious service taken away and being offered another form of “care in the community”, which may well result in simply making their hard-working carers shoulder the burden completely.

    Save the Markhouse Centre

    Kevin Parslow, secretary of Waltham Forest Trade Union council (WFTC), said:

    The trade unions are part of this campaign to save the Centre. Already meetings have been held to resist closure. The response to the consultation has resulted in the council delaying their decision from November to December.

    But we are not stepping back.

    We have planned a Lobby of the Scrutiny Committee at the town hall at 6pm on Wednesday October 9th. We will put our objections as forcefully as we can to councillors.

    This will be followed up by a local meeting on 24th October at the Wiliam Morris Centre. Greenleaf Road, E17 for all Markhouse carers, users and supporters, and extended to all parents of Special Educational Needs and Disabled (SEND) children who are fighting for specialist provision for their children in Waltham Forest schools; and of course, we will be making a special call for all to come to that crucial 3 December council cabinet meeting.

    Nancy Taaffe (deputy secretary WFTC) added:

    We sincerely hope our words and arguments will be effective; but people are so desperate that, if that fails, then more direct action may well have to become an option. We know the source of the financial problems comes from 14 years of Tory austerity, but we also know the money does exist in the tops of society.

    It’s the billionaires that have the broadest shoulders. If the Waltham Forest councillors were to launch a serious mass campaign to get more funding from the Labour government to match the needs of local people, then we would wholeheartedly support that line of resistance.

    Featured image supplied

    By The Canary

    This post was originally published on Canary.

  • 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.