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Category: Disability

  • The high cost of living in a disabling world

    For all the advances that have been made in recent decades, disabled people cannot yet participate in society ‘on an equal basis’ with others – and the pandemic has led to many protections being cruelly eroded

    At times, it feels as if the disability rights movement won. After years of groundwork, 1981 was declared the International Year of Disabled Persons. I was born that year, in Oslo, Norway, and though I did not receive my first diagnosis of muscular dystrophy until I was a toddler, the coincidence is apt enough: I was born into a world that was, at last, beginning to recognise this aspect of my being in it.

    Then, from 1983 to 1992, came the United Nations’ Decade of Disabled Persons. And the Americans With Disabilities Act, the UK’s Disability Discrimination Act and the UN Convention on the Rights of Persons with Disabilities. The turn of the millennium was marked by a litany of good intentions and disavowals of unequal treatment – by an endorsement, as the first article of the UN convention has it, of disabled people’s right to “full and effective participation in society on an equal basis with others”.

    Continue reading…

  • The DWP is facing court again over Jodey Whiting’s death

    A mother whose daughter took her own life after what she described as “obvious failings” by the Department for Work and Pensions (DWP) has hit another brick wall with the justice system. So, she’s having to go to the Court of Appeal to try and get answers about the DWP’s role in her daughter’s death.

    Jodey Whiting

    The Canary has been documenting the case of Jodey Whiting. The 42-year-old mother took her own life on 21 February 2017. It was three days after the DWP made her last social security payment. Whiting’s case involved numerous failings by the DWP. It stopped her Employment and Support Allowance (ESA) because she failed to go to a Work Capability Assessment (WCA), and as lawyers Leigh Day pointed out:

    • The DWP failed to arrange a home visit for Whiting for her WCA. It arranged an appointment at an assessment centre, despite Whiting’s request for a home assessment because she “rarely left the house due to her health”.
    • It also didn’t take into consideration that Whiting had made the department aware she lived with “suicidal thoughts a lot of the time and could not cope with work or looking for work”.
    • And it did not complete a Mandatory Reconsideration of its decision to stop Whiting’s ESA until after her death.

    The DWP, in stopping her ESA, also caused Whiting to lose her Housing Benefit and Council Tax Reduction. So, she was effectively destitute.

    Whiting’s health was poor. She lived with various physical health conditions and mental health issues. These included a brain cyst, curvature of the spine, and bipolar disorder. Whiting was taking 23 tablets a day for her illnesses and conditions. Yet the DWP stopped her money anyway.

    Numerous investigations

    Official bodies have looked at Whiting’s situation. In May 2017, a coroner failed to consider any role the DWP and its decisions had in Whiting’s death. But the Independent Case Examiner, the body which investigates the DWP in certain situations, found multiple failings in its handling of her case. Its report stated that:

    In total there have been five opportunities for DWP processes to prompt particular consideration of Jodey’s mental health status and give careful consideration to her case because of it – none of those were taken.

    Moreover, an independent investigation found that:

    the DWP’s failings would probably have had a substantial effect on Jodey’s mental state at the time she took her own life.

    Since then, Whiting’s mother Joy Dove has been fighting for a second inquest into her daughter’s death.

    Battling the legal system

    First, Dove (represented by Leigh Day) went to the High Court to ask for a second inquest. But three judges denied her application, saying that the first inquest was sufficient. One judge noted that:

    It is likely to remain a matter of speculation as to whether or not the department’s decision caused Ms Whiting’s suicide.

    In my judgment, it would be extremely difficult for a new inquest to conclude that the department caused Ms Whiting’s death.

    So, Dove appealed the High Court’s decision. This was lodged on 1 October. But on 11 October, the High Court refused Dove an appeal. Now, she’s lodged a second application to appeal the High Court’s decision. This is with the Court of Appeal.

    The DWP: “obvious failings”

    Dove said in a press release:

    My fight continues to have a fresh inquest that will examine the role of the DWP in Jodey’s death. It seems to me that there were obvious failings in the way the DWP treated Jodey, which were proved and documented by the Independent Case Examiner, and it is ridiculous that this has not been fully and publicly investigated. How can lessons be learned, and future tragedies prevented, if no one examines this properly?

    Merry Varney of law firm Leigh Day said:

    The possible link between the DWP making repeated errors in the handling of Jodey’s welfare benefits claim shortly before her death, which left her without income, housing benefit and council tax benefit, and her death has never been publicly investigated. Having obtained the Attorney-General’s permission to apply to the High Court for a second inquest, it is disappointing the High Court rejected our client’s application on all grounds and we hope the Court of Appeal will allow her the opportunity to overturn this decision.

    Now, Dove will have to wait once more to see if a court will agree that Whiting’s original inquest was inadequate.

    Featured image via StevovoB – Pixabay and Wikimedia 

    By Steve Topple

    This post was originally published on The Canary.

  • One DWP benefits decision is overturned ‘every minute of the working day’

    A disability charity has revealed that on average a Department for Work and Pensions (DWP) decision on someone’s benefits is overturned by the department itself or a tribunal every minute of the working day. The charity is calling for an overhaul of the process of claiming disability and sickness social security. But is it going far enough?

    DWP: a wrong decision every minute

    As PA reported, the charity Scope has revealed that a mistaken benefits decision is overturned on average every minute of the working day. It was looking at the social security benefit Personal Independence Payment (PIP). It can help people with the extra living costs associated with people’s long-term conditions. PIP is split into two parts: mobility and daily living. But often, DWP decisions on claimant’s entitlement to PIP are wrong.

    PA noted that applicants who are unhappy with a DWP decision can appeal through mandatory reconsideration. This is where a different DWP adviser looks at the case again. They then decide if the outcome should be changed. If it’s not changed, people can appeal the DWP’s decision to a tribunal that’s independent from the department. It’s mandatory reconsiderations and tribunals that Scope looked at.

    It analysed government data on mandatory reconsiderations and tribunals. It shows more than 12,000 disabled people are having wrong PIP decisions overturned every month. Between July 2019 and June 2021, on average, there have been 12,579 successful appeals every month. So, this equates to 1.3 decisions per minute of the working week, based on five eight-hour days.

    Specialist assessors?

    PA reported that Scope wants the assessment process for PIP changed. It’s calling for claimants to have the right to request a specialist assessor when they apply for PIP. More than 10,000 campaigners have backed the disability charity’s petition. Scope has launched a campaign called Disability Benefits Without The Fight. It wants the government to make sure disabled people get the right decision the first time around.

    James Taylor, executive director of strategy at Scope, told PA:

    These wrong decisions throw a person’s life into turmoil. Having to fight for financial support puts a huge toll on disabled people’s mental and physical health and can plunge families into poverty.

    Disabled people must be able to get disability benefits without the fight. [They] are being systematically failed. The benefits system should work for disabled people, not against them.

    We’ve heard from huge numbers of disabled people who felt their assessors did not understand their condition or how it affects their life. The system is getting it wrong far too many times.

    The DWP says…

    The DWP, however, is adamant that the system is working. It told PA that of 4.4 million initial decisions between April 2013 and March 2021, 9% had been appealed and 5% overturned at tribunal.

    A spokesperson said:

    For the majority of PIP claims, we get decisions right and all assessments are carried out by healthcare professionals trained to consider the impact of someone’s health condition or disability, but we are exploring what more we can do so the welfare system better meets the needs of disabled people through our Health and Disability Green Paper.

    But even Scope’s figures do not include the reported four in 10 PIP claimants who do not appeal the DWP’s decisions due to the mental distress of the process

    Tinkering around the edges

    However, some disabled people’s organisations (DPOs) think that simply tinkering with the DWP assessment process is not enough.

    Inclusion London and Disabled People Against Cuts (DPAC) believe that DWP processes need completely overhauling. In 2019, they made proposals based on the UN Convention on the Rights of Persons with Disabilities (UNCRPD). The two DPOs said that, among other things, the DWP needs to completely change assessments. Inclusion London and DPAC said:

    • The assessment / benefit process must be must user-led: a self assessment process (with external verification) delivered through peer-led DPOs
    • It must be based around the following three questions (drawn from personal budgets):
      a) How do you want to live and what do you want to achieve?
      b) What stops you living that life?
      c) What would help you live that life?
    • The assessment/benefit process must express and reflect the UNCRPD – it must explicitly support disabled people to live independently with choice and control.

    Scope’s proposals will do little more than keep the current system in place. If DWP processes are to truly reflect the support needs of chronically ill, sick, and disabled people, they need to place those people at their heart. Nothing less will do.

    Featured image and additional reporting via PA

    By Steve Topple

    This post was originally published on The Canary.

  • The shocking figures which show the devastating effects of the budget

    The effect of Rishi Sunak’s budget has potentially become clear. Several think tanks have calculated that despite measures around things like Universal Credit, the poorest people in the UK will still be worse off. And the picture is even bleaker for the most deprived of all of us. Because the think tanks have not even been able to quantify just how much worse off the most destitute in society will be.

    The budget: losers and losers?

    The Canary previously reported on Wednesday 27 October’s budget. It noted that Sunak made some changes to Universal Credit and the National Living Wage. These included reducing the Universal Credit taper rate from 63% to 55%. Sunak tweeted that the taper rate:

    withdraws support gradually as people work more hours. It is currently 63%, so for every extra £1 someone earns, their Universal Credit is reduced by 63p.

    As The Canary noted:

    Around 5.5 million families were hit by the £20-a-week cut to Universal Credit. So, over 3.6 million of them, including many sick and disabled people, are still worse off – because the changes to Universal Credit will only affect 1.9 million people. Moreover, as The Canary previously reported, the £20-a-week uplift was inadequate to begin with. With inflation continuing to rise, the value keeps diminishing.

    Think tank the Resolution Foundation has crunched the numbers further. As it summed up:

    Around 75 per cent of the 4.4 million households on Universal Credit will be worse off as a result of decisions to take away the £20 per week uplift despite the Chancellor’s new Universal Credit measures in the Budget.

    But the devil is in the detail. And the Resolution Foundation have found that the negative effect of the budget varies depending on how poor you are.

    Haemorrhaging money

    Overall, the changes in Universal Credit don’t fully make up for the loss of the £20-a-week uplift for many. The poorest people are set to lose the most:

    Affect of budget changes on rich and poor

    The budget also hits poorer lone parents on Universal Credit. The Resolution Foundation says that a lone parent with one child who works 20 hours at the minimum wage will actually be £5 a week worse off by April 2022:

    Affect of the budget on lone parent family

    A single adult not working will be £20 a week worse off:

    Affect of the budget for a single unemployed person

    A couple with two children, where one adult works full time on the minimum wage, will only see a £4 weekly increase in their money:

    Affect of the budget on a family

    However, the Resolution Foundation didn’t look at is the poorest 5% of households. It breaks its analysis down into 20 income brackets. But it says that:

    We exclude the bottom 5 per cent, due to concerns about the reliability and volatility of data for this group.

    Spiralling poverty?

    The New Economics Foundation’s analysis also paints a similar picture. It found that:

    the poorest fifth of people would have been £380 a year better off on average if the £20-a-week uplift had stayed in place instead

    And it said that if Sunak had kept the £20-a-week uplift, this:

    would have prevented 300,000 more people from being pushed into poverty this winter.

    But like the Resolution Foundation, the New Economics Foundation did no calculations for the bottom 5% poorest people. So, while the negative effects of the budget are stark for some of the poorest people, how it will hit the most destitute in society is still unclear.

    The most destitute, forgotten?

    The Institute for Fiscal Studies (IFS) gave some indication of who would be affected and the scale of it. As it noted:

    The position of those out of work, especially those without children, remains precarious indeed. No increase in out of work benefits [so-called legacy benefits like Jobseeker’s Allowance, JSA] for the childless unemployed for half a century leaves their living standards dramatically trailing those of the working majority. The gap between the generosity of the furlough scheme and the meanness of our out of work benefit system could hardly be more stark.

    In other words, people on social security like JSA and Employment and Support Allowance (ESA) are hit the hardest, and these people may well be in the other think tanks’ missing bottom 5% bracket. It’s of concern that neither the Resolution Foundation nor the New Economics Foundation gave this data. Because as The Canary previously reported, 1.9 million people on these legacy benefits are sick and disabled people – who should be protected by the Equality Act.

    More misery to come

    It seems that after over ten years of austerity and then the coronavirus (Covid-19) pandemic, the poorest people in the UK will now face another decade of misery. Sunak’s budget has done little for those lower down the UK’s economic pecking order. But it’s done the least for those that are on the bottom rungs of the system through no fault of their own. Sick and disabled people and the country’s poorest individuals have been thrown under the bus by a government intent on pushing people to the fringes of society.

    Featured image via Good Morning Britain – YouTube

    By Steve Topple

    This post was originally published on The Canary.

  • Allow us the option of a humane, painless death | Letters

    Readers share their perspectives on Baroness Meacher’s assisted dying bill

    Jane Campbell says disabled people need more help to live, not to die (22 October). As a disabled person myself, with a condition which will continue to deteriorate but which won’t kill me, I say we need both.

    We do need help to live and we may need help to die, if that’s what we want. People talk about dying with dignity; help with living doesn’t always include dignity. Having your arse wiped by someone else, whoever they are, isn’t very dignified and that is one of the aspects of my own future I don’t look forward to. What we need in help with living and with dying is humanity, kindness and, certainly for me, humour.
    Kathryn Hobson
    Stockton-on-Tees, County Durham

    Continue reading…

    This post was originally published on Human rights | The Guardian.

  • Rishi Sunak’s budget abandoned millions of sick and disabled people

    Rishi Sunak’s autumn budget made no mention of the Department for Work and Pensions (DWP) until the end. And when the chancellor did announce changes to social security as his grand finale, he threw millions of people off a financial cliff.

    The autumn budget: Sunak’s Universal Credit admission

    As Sunak tweeted, the Universal Credit taper rate:

    withdraws support gradually as people work more hours. It is currently 63%, so for every extra £1 someone earns, their Universal Credit is reduced by 63p.

    So, the chancellor has decided to cut the taper rate to 55p:

    This will be cold comfort to countless families.

    3.8 million families still worse off

    Around 5.5 million families were hit by the £20-a-week cut to Universal Credit. So, over 3.6 million of them, including many sick and disabled people, are still worse off – because the changes to Universal Credit will only affect 1.9 million people. Moreover, as The Canary previously reported, the £20-a-week uplift was inadequate to begin with. With inflation continuing to rise, the value keeps diminishing.

    Of course, the projected rate of inflation is set to rocket to 4.6% by April 2022 and energy costs are spiralling. Meanwhile, Sunak increasing the National Living Wage by 6.6% won’t necessarily help the hundreds of thousands of families with self-employed workers who claim Universal Credit. Couple that with the re-introduction of the Minimum Income Floor (what Universal Credit thinks people should earn and then assumes they do, adjusting their payment accordingly up or down) and Sunak’s increase in the taper rate may well be of cold comfort. Plus, an increase in Universal Credit may well reduce people’s other benefits like Council Tax Relief, because it’s based on your net Universal Credit award (the higher that is, the less council tax help you get).

    No support for sick and disabled people

    Additionally, Sunak has so far done nothing for people on legacy benefits like Employment and Support Allowance (ESA) and Carer’s Allowance. As one Twitter user pointed out:

    Around 1.9 million sick and disabled people on legacy benefits did not receive any more money during the coronavirus (Covid-19) pandemic. Nor did many carers. All they got was a tiny increase in their social security payments.

    But the government knows this. Moreover, its own analysis showed that with all the budget measures combined, the poorest people (including sick and disabled) would by no means benefit the most – despite the Universal Credit announcement:

    Impact of budget on cash for families

    Overall, the budget detailed a 1.3% real terms increase in the DWP budget. It also said the government would complete the rollout of Universal Credit by March 2025 – eight years later than planned. This coupled with the reduction in the taper rate perhaps shows how dire Universal Credit has become. The people who designed the system, including former DWP boss Iain Duncan Smith, predicted government savings – which have been marginal at best.

    The government has also contradicted its own logic for why it cut the £20 uplift in the first place: that it was just for the “economic shock” of the pandemic. Clearly, it knows that the financial strain on families is still there – but is still only willing to make minute changes.

    Millions left with just hot air

    So, overall, Sunak’s grand finale to the budget of tinkering with Universal Credit won’t actually help at least 5.5 million families – many of them sick and disabled. Moreover, it’s just a continuation of a system that has been doomed to failure from the outset.

    Of course, Sunak’s willingness to throw sick and disabled people over a financial cliff should not be a surprise. Previously, he made it explicitly clear that additional social security support during the pandemic was intentionally only for workers. But with the UN once again preparing to investigate the UK over sick and disabled people’s human rights, the chancellor intentionally making these people second-class citizens may not go unnoticed. For the time being, though, his budget was little more than hot air for some of the poorest people in the UK.

    Featured image via Guardian News – YouTube

    By Steve Topple

    This post was originally published on The Canary.

  • 2,000 Canary articles later, I have a message for you all

    I’m overwhelmed and somewhat perplexed to say that this is my 2,000th article for The Canary. That works out at, after I factor in the year I stopped writing, over one article every day since April 2016. So, for this “accomplishment” (my editor’s wording) I want to tell you about mine and The Canary‘s journey to this point. But I also want to talk about the idea of ‘hope’ – and how, even when all seems lost, it’s the one thing that we have to hold on to with all our might.

    The Canary: what a ‘journey’

    I’m not a fan of insipid, X Factor-style ‘journeys’. But The Canary‘s flight from its humble beginnings to this point has been quite the voyage of discovery.

    We started off with £500 and a vision of a different kind of media. After launching, things quickly progressed. I joined in April 2016 and soon realised that we were rattling a few cages. I’ll never forget former Unite the Union boss Len McCluskey mentioning one of my stories on the Andrew Marr Show. Things blew up – and the rest is kind of history. We had over eight million readers in the run up to the 2017 general election; my partner always reminds me of the time she watched me ‘sleep-typing’ in bed. I’ve had articles that have caused questions to be asked in parliament. My welfare coverage was being read by hundreds of thousands of people a month.

    So, The Canary and my time with it has been unforgettable. I have to extend a huge thanks to the editorial team. Throughout my time here they’ve supported me 100%. This is despite countless errors of judgement on my part.

    Life’s peaks and troughs

    But alongside all this, The Canary has also been a central part of my life through what have perhaps been my defining years: a period that saw me finally finding my path in life after being on-and-off benefits since 2008; managing my alcoholism after a very public relapse in 2016; finding a partner accepting of my bisexuality; moving to London and gaining a stepson; coming to terms with my mother’s dementia diagnosis – and within all this, finding and developing my voice and guiding mantra in life.

    But it can be exhausting living, observing, and then writing about the chaos that constantly engulfs our society. I live in appalling social housing. My family is answerable to the Department for Work and Pensions (DWP) via our reliance on Universal Credit. My partner is chronically ill and disabled and I’m her full-time carer. Money is a constant struggle. Ill-health permeates our lives. So, I know the dread that you feel every single morning when you wake up: wondering what pain, stress, or trauma the system and life will inflict upon you that day.

    Hope springs from the darkest of places

    But I also know that in the bleakest of times there can often be the faintest glimmer of hope; a chink of light piercing through the seemingly impenetrable dark. Moreover, life is transient, fluid, and in a constant state of flux. Whatever pain you currently feel will eventually wane. Whichever disaster has landed at your feet today will eventually be in the past – whether that be tomorrow, next week or in a year. And none of us definitely know what the future holds.

    Yet the notion of hope is not an individualised phenomenon. We rely on other humans to ignite it and keep it burning in us. I see hope in my stepson’s eyes. I’ve seen it when disabled people blockaded Westminster bridge. I hear it when I listen to music. And I feel it when I embrace my partner. Hope also fills me when I look at The Canary and enter our newsroom. Because behind the garish, little yellow bird, the bold and brash headlines, and the smears that have been levelled at us throughout our short existence, there’s a team of people who really do care.

    Seeking emancipation

    You may not always like the way we do things. Sometimes, you might not feel we live up to the expectations placed upon us. And you might not always agree with what we have to say. But we are a group of people who passionately hold dear the wellbeing of every other person and creature on this planet. We try every day to bring you the stories and information to start enacting change. So, we’re trying. And I know that each and every one of our actions come from a place of good.

    The Canary is all about hope. It’s what started us in 2015. Kerry-Anne, Nancy Mendoza and Drew Rose hoped for something better for the media. Society’s hope is what drove us to the unexpected heights we reached during the 2017 general election. It’s what kept us going when financially we nearly sunk. And hope is what gets each and every one of us into the newsroom every day – despite the challenges many of us face. But hope is also what needs to form the next stage of The Canary‘s and, maybe, my own journey.

    The Canary: where next?

    We have reached a defining moment. Kerry-Anne has left. We have perhaps our most diverse team of talent to date. But what next?

    For me, The Canary (and independent media more broadly) needs to be reaching the people that need it. Social media is all well and good. But we’re often only talking to the same people. It’s a club which needs more members; those we’re currently not engaging with. So, The Canary has to work out how we reach out into the most marginalised and oppressed communities in the UK. They’re communities like my own. Here, poverty and inequality are rife – but hope is often sparse.

    Our failed systems of economics, government, and politics have shown that for things to change in this country and around the world we need to take things back to basics. We have to go back to planting the seeds of change in the smallest of communities. Then, we nurture them to grow from there. The Canary has to be central to this. But how we position ourselves there is an ongoing conversation we need to have, not just with ourselves but with our readers too.

    We have to decide

    I’m privately a bit of a Lord of the Rings geek. Of the many passages from J.R.R. Tolkien’s work that stand out, one always comes to the forefront of my mind:

    ‘I wish it need not have happened in my time,’ said Frodo.

    ‘So do I,’ said Gandalf, ‘and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us’.

    I believe this is fitting for the times we currently live in. Humanity is perhaps at its most monumental crossroads since the dawn of civilisation. The struggles most of us face have not changed, but the backdrop of the climate catastrophe has shone a glaring light on them. Saving our species and the planet is one challenge. But with that comes another: not allowing ourselves to continue in the way we have before. We have to find a new way of existing. It must be one where everyone is truly equal and power is no longer in the hands of a few. Because it’s this which has led us to this point in the first place.

    One person is enough

    So, we need hope. The Canary has been and always will be a part of that. You, our readers, are too. I often feel hope is far easier to lose than it is to keep. It is too often out of reach. But those of us who can hold on to it, even fleetingly, have a responsibility over it. We need to spread hope as far as our eyes can see. It’s not some specific idea of what the world could look like. It’s the idea that the world can look different to the one we inhabit now. That’s up to all of us to achieve.

    My work has always been driven by one underlying hope. If I can reach one person and change their life, then my job is done. If one person can give someone else the hope to begin to enact change in their own lives, then with perseverance it can spread like wildfire. So far as a species we have failed to do that. But I believe we can, if we worry less about ourselves and those in power and start thinking more about the people around us. For my next 2,000 articles I commit to doing that. And I think in your daily lives, you should commit to spreading hope too.

    We can be better and we must be. It’s up to all of us to make that happen.

    Featured image via The Canary 

    By Steve Topple

    This post was originally published on The Canary.

  • The UN is preparing to investigate the UK government again

    A UN committee is gathering information ahead of another investigation into the UK government. It’s over its adherence to the human rights of chronically ill and disabled people. The UN’s last report found “grave” and “systematic” violations of people’s rights, calling it a “human catastrophe”. Now, deaf and disabled people’s organisations (DPOs) are asking for evidence to submit to the UN.

    The UNCRPD

    The UN Committee on the Rights of Persons with Disabilities (UNCRPD) is a human rights branch of the UN. It oversees the Convention on the Rights of Persons with Disabilities (CRPD). Many countries like the UK have signed up to it. Some, like the US, have not:

    Map of the UNCRPD

    The convention has a series of “articles” that the UNCRPD says countries should abide by to protect chronically ill and disabled people’s human rights. These include:

    • Accessibility.
    • Right to life.
    • Access to justice.
    • Freedom from torture or cruel, inhuman or degrading treatment or punishment.
    • Freedom from exploitation, violence and abuse.
    • Living independently and being included in the community.
    • Education.
    • Health.
    • Work and employment.
    • Adequate standard of living and social protection.
    • Participation in political and public life.
    • Participation in cultural life, recreation, leisure and sport.

    Every so often, the UNCRPD monitors countries to see if they are sticking to these articles or not. The last time the committee looked at the UK was in 2016. And the report was damning.

    “Grave” and “systematic” human rights violations

    The 2016 UNCRPD report accused successive governments of “grave” and “systematic” violations of disabled people’s human rights. In August 2017, the UNCRPD followed up on its report; this included its chair accusing the government of creating a “human catastrophe” for disabled people.

    Specifically, the UNCRPD found:

    • The UK government forced through reforms with no regard for the rights of disabled people.
    • The Department for Work and Pensions (DWP) “processed rather than listened to or understood” disabled people during Work Capability Assessments (WCA).
    • The WCA gave disabled people significant “anxiety” and “financial, material and psychological hardship”.
    • Successive governments introduced reforms that had evidently caused “high levels of stress, anxiety and depression”.

    The report also specifically noted the government had violated rights due to:

    • The Bedroom Tax.
    • Changes to Personal Independence Payments (PIP).
    • Cuts to social care.
    • The abolition of the Independent Living Fund (ILF).
    • Caps on benefits.

    Overall, the UN concluded that “systematic violations” of disabled people’s human rights in the UK had occurred. It stated that:

    • The government knew that welfare reforms would “disproportionately and adversely affect the rights of disabled people”, yet it did nothing. It also ignored evidence indicating this.
    • Measures introduced by the government were discriminatory.
    • The government had violated disabled people’s basic rights, including independent and community living and rights to life, social protection, and employment.
    • Over half a million people may have had their human rights abused by the government.

    Now, the UNCRPD is preparing for its next investigation. It is looking for chronically ill and disabled people to give evidence. In response, a group of organisations is going to start collating people’s lived experiences.

    Documenting people’s lives

    The Reclaiming Our Futures Alliance is a group of DPOs. It’s organising a shadow report to send to the UNCRPD documenting how well people think the UK government is sticking to the convention. As group member Inclusion London stated on its website:

    The Reclaiming Our Futures Alliance is working with partners in the DPO Forum, Disability Rights UK’s Our Voices and Disabled People Against Cuts to collect evidence and draft a shadow report for England. Disability Wales, Inclusion Scotland and Disability Action Northern Ireland are working on reports for their respective nations.

    We want Deaf and Disabled People, DDPOs and allies such as disability charities and human rights organisations to send us evidence that you think should be included in the England shadow report.

    It continued:

    Information that you send could be links to reports, statistics or other data. Every point we make in the report needs to be backed up by evidence that is properly referenced. Please make sure you include the source of any information you send us including title, author and date of publication.

    The Committee are also interested in the lived experiences of Deaf and Disabled people. If you or members of your group or organisation want to send us examples from your own lives, please be aware that everything we are sent in response to our call for evidence will be published online and will be publicly available.

    Time is short

    The group needs people’s evidence by 5pm on Monday 22 November. It held a launch event on 20 October:

    Ellen Clifford, the lead author for the shadow report, stated:

    At a time when DDPOs are still over-stretched from the pandemic and have enough to contend with trying to guarantee their own survival, the fact that so many organisations unhesitatingly offered time and resources to get involved shows how important the Convention is to Deaf and Disabled people. We’re hoping that the end result will be a report that Deaf and Disabled people across the country feel genuine ownership over. It’s a steep task, given that the world limit for the report is just 5350 words and we know people will have a lot to say, but collectively Deaf and Disabled people can do great things when come together in a spirit of unity.

    Another damning report?

    It will be interesting to see what the UNCRPD says when it reports on the UK again.

    The report will come against the backdrop of the coronavirus (Covid-19) pandemic. A recent parliamentary report branded the government’s response to the crisis “one of the most important public health failures the United Kingdom has ever experienced”. Disabled people suffered disproportionately throughout the pandemic – making up 58% of all deaths between 24 January 2020 and 28 February 2021. Furthermore, countless people experienced cuts to their care and support.

    Additionally, the roll out of Universal Credit has stepped up a gear since the UNCRPD’s 2016 report. Severely disabled people have repeatedly taken the DWP to court because they lost money when the department forced them on to Universal Credit. A judge agreed, saying the DWP discriminated against them.

    Chronically ill people and those living with mental health conditions also need to be included in the scope of the UNCRPD report. Many of them are classed as disabled, but they don’t always live with visible impairments. Recently, there has been controversy, and a legal challenge, over the official guidelines for the treatment of myalgic encephalomyelitis (ME). Also, in 2017, a court ruled the DWP discriminated against people living with mental health conditions regarding PIP.

    The waiting game

    So, many chronically ill and disabled people will be waiting to see what the UNCRPD says this time. The challenge with this new report is that previously the government effectively whitewashed its findings and failed to act on them. It’s currently in the process of producing a new strategy for disabled people, but DPOs have already criticised it. They’re also mounting a legal challenge to the process.

    It’s likely that this next UNCRPD report will be as damning as the previous one. To make sure chronically ill and disabled people have their voices heard, they must be included. So, if you want to have your say over how the government has treated you or someone you know, then get involved.

    Featured image via Sky News – YouTube and Wilifried Huss – Wikimedia

    By Steve Topple

    This post was originally published on The Canary.

  • Jodey Whiting’s mother is once again fighting the justice system and the DWP

    The mother of a woman who took her own life after the Department for Work and Pensions (DWP) stopped her social security is once again having to fight the justice system. And her battle with the courts is also a battle with the DWP.

    Another court battle looming?

    Jodey Whiting was a 42-year old mother. As The Canary previously reported, she took her own life after the DWP stopped her social security. Her mother has been fighting for justice ever since.

    The original inquest did not look at the DWP’s role in Whiting’s death. Then in September, the High Court refused to grant a new inquest. So, her mother is now appealing that decision.

    But it’s the background to the case which is crucial.

    DWP failings

    Because the DWP stopped Whiting’s Employment and Support Allowance (ESA), she also lost her Housing Benefit and Council Tax Reduction. Whiting lived with various physical health conditions and mental health issues. These included a brain cyst, curvature of the spine, and bipolar disorder. Whiting was taking 23 tablets a day for her illnesses and conditions.

    She took her own life on 21 February 2017, three days after the DWP made her last ESA payment. This was because she missed a Work Capability Assessment (WCA). According to solicitors Leigh Day:

    • The DWP failed to arrange a home visit for Whiting for her WCA. It arranged an appointment at an assessment centre, despite Whiting’s request for a home assessment because she “rarely left the house due to her health”.
    • It also didn’t take into consideration that Whiting had made the department aware she lived with “suicidal thoughts a lot of the time and could not cope with work or looking for work”.
    • And it did not complete a Mandatory Reconsideration of its decision to stop Whiting’s ESA until after her death.

    In May 2017, a coroner failed to consider any role the DWP and its decisions had in Whiting’s death. So her family and Leigh Day took the matter to the High Court. They were asking for a new inquest into her death. But on Friday 17 September, the court denied her family this justice.

    Denied justice?

    As The Canary previously reported, lord justice Warby, justice Farbey, and judge Thomas Teague QC – the chief coroner for England and Wales – dismissed Whiting’s family’s claim. They found the original inquest to be sufficient. Farbey said:

    It is not necessary and would not be in the public interest for a coroner to engage in an extensive inquiry into the department’s decision-making…

    The inquest conducted by the coroner was short but fair. It covered the legal ground and dealt with the evidence before the coroner including the views of Ms Whiting’s family.

    It is likely to remain a matter of speculation as to whether or not the department’s decision caused Ms Whiting’s suicide.

    In my judgment, it would be extremely difficult for a new inquest to conclude that the department caused Ms Whiting’s death.

    So now, Whiting’s mother Joy Dove is appealing this decision.

    Human rights and public interest

    Leigh Day said in a press release that the reasons for Dove’s appeal were that, contrary to the High Court’s decision, there was a public interest argument for a new inquest.

    The firm noted that Dove:

    also argues in her case that the duties under Article 2 of the Human Rights Act (the right to life) should be engaged due to the multiple serious and systematic failings of the DWP. She argues that the court was mistaken in concluding that to grant a fresh inquest it had to deem the first one insufficient.

    “For Jodey’s sake”

    Dove said in a press release that:

    I can’t accept that the first inquest into Jodey’s death was a thorough investigation into the reasons for her death. I believe that there should be a proper and full look at the way that she was let down by the DWP and that the public need to know what went wrong there. For Jodey’s sake, I have to appeal the refusal to grant us a second inquest.

    And as she previously said:

    More than four years on from losing Jodey the DWP has still not had to answer for the role that I believe they played in her death.

    DWP: systemic problems

    As The Canary previously reported, at least 35,000 people have died on the DWP’s watch since 2011. They died either waiting for the DWP to sort their claims or after it said they were well enough to work or start moving towards work.

    In 2018 alone there could have been 750 (if not more) people who took their own lives while claiming from the DWP. But across five years, the department only reviewed 69 cases of people taking their own lives.

    In Whiting’s legal case the DWP argued its problems were not systemic. All the evidence shows otherwise. And Whiting’s case, and her mother’s desperate legal battle, may be crucial in officially exposing this.

    Featured image via Wikimedia and Leigh Day

    By Steve Topple

    This post was originally published on The Canary.

  • NICE will now face court over the ME guidelines debacle

    The National Institute for Health and Care Excellence (NICE) is going to be in court over its delay in publishing new guidelines for the treatment of myalgic encephalomyelitis (ME). One barrister told The Canary that NICE’s actions could leave its guidelines process “irretrievably flawed”.

    The case is being brought by a child. They were previously harmed by treatment NICE had recommended. But the legal letters also expose that NICE, the guidelines process, and its overall role are looking utterly unfit for purpose. So, is it time for the government to step in?

    NICE: the debacle continues

    The Canary has been documenting the ongoing situation with NICE, ME (sometimes known as chronic fatigue syndrome (CFS)), and the community of people that’s built up around this debilitating neuroimmune disease. You can read our full analysis of the situation here and background to the story here. In short, NICE has been drawing up new ME treatment guidelines. These are the guidelines medical professionals are supposed to follow when treating someone with ME.

    It was supposed to publish the final version on 18 August, but at the last minute it pulled them. This was due to organisations like Royal Colleges and NHS England not agreeing with the new guidelines. So, NICE is holding a round table event with stakeholders on 18 October to try and reach an agreement.

    In the meantime, a legal case has been launched against NICE. The claimant is seeking a judicial review of its decision to not publish the guidelines. As The Canary previously reported, this is on the basis that NICE failed to follow its own procedures. Central to this story are treatments that many doctors and patients alike consider harmful. NICE’s old ME guidelines contained these treatments, but the update removed one and effectively downgraded the other. Some people feel that NICE delayed publication of the guidelines because of pressure from organisations that support the contentious and often harmful treatments it had removed or downgraded.

    A fast-moving story

    The lawyer representing the claimant, Peter Todd, has published the letter before claim – the first step in taking legal action – he sent to NICE. It outline’s the claimant’s case against the organisation. Todd initially gave NICE until 12pm on 6 October to respond to the claim.

    NICE didn’t respond by the deadline. Todd said on Twitter that he would now be applying for legal aid. Then, on Thursday 7 October. Todd tweeted that NICE had responded at 5:31pm the previous day. He published its response. Finally, on Friday 8 October, Todd confirmed that the application for a judicial review was going ahead and that the claimant had got legal aid. Todd hopes to serve proceedings by Friday 15 October.

    ‘Process not science’

    The Canary spoke with barrister and person living with ME Valerie Eliot Smith. She previously leaked NICE’s finalised guidelines. You can read The Canary‘s analysis of them here. Smith told us:

    This challenge to NICE’s decision to pause publication of the new guideline for “ME/CFS” is most welcome. Todd… has set out a clear, robust case on behalf of the claimant…

    The desired outcome of this claim is that NICE follows its own procedure by publishing the new guideline immediately, irrespective of the roundtable event on 18 October. It’s important to remember that this action is concerned with a judicial review of due process, not of the scientific evidence.

    NICE has instructed DAC Beachcroft solicitors, the firm which represented the organisation in a judicial review of the 2007 guideline for “CFS/ME”.

    So, what do the legal letters state? And more importantly, where do things now stand for people living with ME, their families, and their advocates?

    The judicial review

    The basis for the judicial review is, in short, that NICE failed to follow its own rules. The letter before claim outlines two areas where the claimant believes NICE has breached its legal obligations. In a section titled “Procedural impropriety”, it says that:

    NICE has broken out of its prescribed procedures and now intends to repudiate its procedures and engage in politics. This is a fundamental betrayal of NICE’s constitutional role and prescribed methods. The Claimant intends to ask the court to intervene to prevent this unlawful use of NICE’s powers.

    In a section titled “Irrationality”, it continues:

    public bodies such as NICE must use their legal powers rationally. …

    NICE have acted irrationally in that they have ceased to have regard to scientific evidence, but instead are being materially influenced by irrelevant factors such as whether those who may have commercial interests need to be persuaded to support a change which will adversely affect those interests.

    As Smith told The Canary:

    The crux of this case is that NICE has strayed so far outside its own prescribed procedures that it has exceeded its powers, thereby acting unlawfully and/or irrationally.

    Meanwhile, the response that NICE’s solicitor sent to Todd, which he subsequently published, has sparked anger.

    Incredulous?

    The response outlines why NICE’s lawyers believe there’s no case to answer. On procedural impropriety, it states that:

    NICE does not intend to “engage in politics” or “engage in any fundamental betrayal of its constitutional role and prescribed methods.” The Manual does not expressly provide circumstances justifying a pause in publication of guidelines, but nor does it expressly exclude this possibility

    On the issue of irrationality, the letter states that NICE delayed publication to “ensure the effectiveness” of the new guidelines. It noted how the legal claim was based on a “misconception” of this. The letter questions the claimant’s assertion that NICE was effectively kowtowed by “commercial interests”. It also denies that NICE’s decision to pause publication was influenced by “individual stakeholders”.

    One interesting point that NICE’s lawyer’s letter threw up was over the real-world impact of the guidelines. It states that:

    NICE guidelines are not binding. They inform the judgement of bodies providing NHS services and their clinicians, nothing more.

    In other words, the NHS and doctors don’t have to adhere to what NICE says in its guidelines. This shows a major discrepancy in NICE’s actions and casts doubt on its claims about wanting medical professionals to support the new guidelines – when it’s legally not necessary for them to do so, anyway.

    ‘Making up the rules’

    Smith told The Canary:

    The response to this current claim is predictably disingenuous. It is reduced to picking away at individual points in the hope of obscuring the significance of the new guideline which represents a radical shift away from harmful treatment recommendations.

    NICE’s main defence is that it has a wide discretion. This is quite true. Nevertheless, the sentence “[t]he Manual does not expressly provide circumstances justifying a pause in publication of guidelines, but nor does it expressly exclude this possibility” demonstrates a degree of desperation which would be comical if it were not so serious.

    Moreover, NICE is created and governed by statute. It has no power to make up the rules as it goes along.

    “Influenced by external interference”

    Smith explained further why NICE appears to be at fault:

    In Paragraph 14 of the response, NICE concedes three important points:

    • Because of the large number of comments on the draft guideline (issued in November 2020) NICE postponed its final publication date to 18 August 2021 in order to respond fully and complete all of the pre-publication processes.
    • Having done that, NICE then released a confidential advance copy to all stakeholders who had commented on the draft.
    • “Following that confidential release, NICE received a number of communications raising issues with the guideline from representatives of Royal Colleges and NHS England”.

    Point three is a clear admission that, at this stage, NICE allowed itself to be influenced by external interference. NICE is supposedly an independent body. By this stage, such interventions should simply not have been possible.

    So, it seems it is now up to a court to decide if there is a case for a judicial review. Meanwhile, at the centre of this story are people living with a life-changing disease that’s often severe and chronic.

    NICE: subjecting patients to further harm?

    The letter before claim outlines the situation for the claimant. It stated:

    The Claimant was well, until, in August 2012, he suffered a bout of sickness and diarrhoea which lasted about 2 months. His sister suffered the same illness at the same time and whereas she recovered, [he] remained unwell. In December 2013 he was admitted into hospital due to severe headaches and when discharged he was diagnosed with post-viral CFS/ME.

    He was given treatments according to the current NICE guidelines: CBT where he was instructed not to talk about his symptoms but just push through them and Graded Exercise Therapy [GET] which was a continual gradual increase in activity, regardless of the state he was in. This treatment caused him significant harm. By 5th March 2014 his Mum noted:

    “[he] is in a dreadful state now. Constant pain, visual problems, still at school and finding it hard to concentrate. They failed to record tiredness/exhaustion. He’s in constant pain, shaking in his sleep, mumbling, cold legs from knee to ankle, asking if he is going to die”.

    Encouraged by the guidelines, [his] post-exertional malaise [PEM] was ignored. Since that time he has been often bed-bound. He has come to understand the harm that the NICE recommended therapies caused to him. [He] is worried that if he seeks treatment from the NHS he will be further subject to the harmful regimen specified in the NHS by the current NICE guidance.

    His circumstance will ring true to many people living with ME.

    But there’s another factor in this story that has not yet been fully explored. And it’s that NICE is directly answerable to the government.

    Should the government intervene?

    NICE was established in its current form under the Health and Social Care Act 2012. Its framework agreement with the Department of Health and Social Care (DHSC) laid out how it would work with other bodies. Specifically, the agreement states firstly that:

    NICE’s legislative framework describes its general functions and provides that its work is commissioned by ministers or by NHS England. NICE’s work programmes are normally set by ministers and NHS England several years in advance and the development of individual pieces of guidance can take between 6 months to 2 years.

    It also states that the DHSC secretary of state (currently Sajid Javid) is “accountable to parliament” for NICE and its “performance”. And moreover, the agreement goes on to say that the DHSC permanent secretary (currently Chris Wormald) is responsible for making sure “arrangements are in place” to do the following:

    • address significant problems in NICE, making such interventions as are judged necessary. …
    • bring concerns about the activities of NICE which require explanations to the DHSC board and give assurances that appropriate action has been taken.

    In other words, the government could intervene over NICE’s actions in relation to the ME guidelines. It may require an MP to raise the issue formally via an “urgent question” in parliament first.

    ME guidelines process: “irretrievably flawed”?

    Smith summed up the situation to The Canary:

    NICE’s response completely fails to address the central issue raised by the claim. If it intends to publish the new guideline regardless of the outcome of the roundtable, then there is no justifiable reason why full publication has not already taken place.

    However, if NICE has not yet published the guideline on the basis that there might be some changes or tweaks as a result of the roundtable event, then this either reopens a process which has already been completed or it begins a whole new consultation and evidence review.

    There is no credible justification for those options. If either was to happen, it would confirm that this process is fundamentally and irretrievably flawed.

    Moreover, the legal wrangling has exposed NICE as seemingly less and less fit for purpose. Its own admission that doctors are under no obligation to follow its guidelines makes a mockery of not only this whole situation but also of NICE’s role in deciding clinical practice in England.

    Meanwhile, the waiting game for people living with ME, their families, and advocates continues. As The Canary previously stated, there is no guarantee the court will accept the grounds for a judicial review. But with each development of this story, more pressure is placed on NICE to take a long, hard look at its actions and the effect they have on chronically ill people.

    Featured image via NICE – YouTube 

    By Steve Topple

  • Disabled women have it worse than Britney Spears

    Britney Spears. We’ve all heard bits and pieces about her fight to regain guardianship of herself from her father. In the US they call this conservatorship and according to the BBC, it is “…granted by a court for individuals who are unable to make their own decisions, like those with dementia or other mental illnesses.”

    I must admit I’m not an expert on the details, but I see control. Lack of autonomy. Lack of decision making power. Being infantilized. Having not only her sense of control taken from her, but also in practicality. And I see the outpouring of human concern for her. The empathy, the sympathy, the worry.

    And then I think of Ann Marie Smith, the disabled woman in South Australia who was totally reliant, through physical disability, on other people. And her final days, months reliant on a carer who didn’t care. But she had no voice, no court to go to, no legal service to access. She was totally at this woman’s mercy. And a benevolent mercy it was not. So she was left, left to die from something that should never happen to any human. And would not happen, to a human who could walk.

    That’s it, the ability to walk and communicate. She was considered rubbish, superfluous, because she couldn’t walk or talk. But I’m sure she felt. I’m sure she felt every last terrifying moment. That, my friends, is ableism, in its cruelest form, and its most fatal. This is one reason why, Women With Disabilities Australia submitted to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability that all restrictive practices “are violent and are in violation of human rights” and should be abolished. A ‘restrictive practice’ means any practice or intervention that has the effect of restricting the rights or freedom of movement of a person with disability. It includes confining someone to a chair, like Anne Marie or imposing a guardianship, like in Britney Spears’ case. It’s ableism.

    Britney Spears at a Montreal Concert. Picture: Anirudh Koul. Posted here under a Creative Commons License (CC BY-NC 2.0)

    I see ableism every day, in a more insidious, hidden form. But at its very core, its an assumption that you know better for this person, that you understand their situation. But you don’t.

    Personally, I’ve been not disabled and disabled. I feel it’s a gift. It’s a gift to see the different ways in which the world treats you. It has illuminated for me a whole other world that I didn’t know existed, as I spent the first 35 years of my life being conditioned only to privilege.  I call it the straight up benevolent assumption.

    When you interact with people and institutions, the assumption that you mean well is in-built. And it teaches you that the world will mostly deliver. And it did. And again, with privilege, it still does, but since becoming disabled, I have a new lens. The in built assumption from others and institutions is not a forgone conclusion for so, so many. Being given this lens and sense of perception part way through life has been for me, like a light shining on the inner workings of the human race.

    When I woke from my stroke, I couldn’t physically talk. I could understand, make language if someone passed me a letter board, but I had lost the nerve to make the mechanics. It has gone offline, care of brain haemorrhage. All of a sudden, I was an infant. I was talked over, I was talked about in my presence.  What I wanted or needed was assumed. Until I started doing things like yanking really hard at people’s beards with my good hand because I was so furious.  And until I could start slowly talking again. I noticed even the rehabilitation doctor make more eye contact with me once I had a few words. I was like, wow, even you. (If you read academic research around disability, you will find the word “infantilized” used over and over again.)

    And because I lived a life of privilege, I was confused. What is going on? It was so stark, from one day to the next. Any ordinary day indeed.

    My days and months of losing my sense of autonomy is nothing on the years and lifetimes that so many humans experience. Feeling. No one doesn’t feel. The physical stuff is our mortal shell. But the feeling is what hurts our heart and heads. Or make it happy. I’m sorry we failed you Anne Marie, but I’m not surprised. And embrace your freedom Britney.

    Feature image: Ann Marie Smith, provided by the South Australian Police. 

    The post Disabled women have it worse than Britney Spears appeared first on BroadAgenda.

    This post was originally published on BroadAgenda.

  • A delayed court case is causing more DWP chaos

    A legal case against the Department for Work and Pensions (DWP) has been delayed. The court claims it’s due to a shortage of judges. And one of the claimants bringing the legal challenge has taken to Twitter to express their frustration.

    The DWP: ignoring legacy benefit claimants

    The £20 uplift for Universal Credit is coming to an end. As The Canary has been reporting, the Tories’ cut will plunge countless people into further poverty. And the move by chancellor Rishi Sunak and the DWP has been contentious for other reasons, too. This is because the government hasn’t helped people on things like Employment and Support Allowance (ESA). These are known as legacy benefit claimants.

    Campaign group Disabled People Against Cuts (DPAC) has been at the forefront protesting about this. As member and disability rights activist Paula Peters previously told The Canary:

    the Tories completely overlooked and ignored legacy benefit claimants during the pandemic. Many of these 2.2 million claimants are disabled people. Some were also shielding. Living costs rose and disabled people couldn’t afford the most basic standard of living. When you ask disabled people what £20 uplift would mean to them, you hear the same response: everything; life-changing; affording fresh fruit; buying the extra items you need.

    We just want to live with dignity and respect.

    The Tories’ neglect of legacy benefit claimants during the coronavirus (Covid-19) pandemic is facing legal action.

    A legal challenge

    As The Canary previously reported, two disabled people are using legal aid to mount a judicial review. This is over the DWP’s failure to uplift legacy benefits in line with Universal Credit and Working Tax Credits. Firm Osbornes Law is representing them, and it’s looking at the government’s decision not to give an uplift to ESA. The case will argue that this is discrimination under the European Convention on Human Rights, because the claimants are disabled people.

    Philip Wayland is one of the claimants. He told Disability News Service (DNS) that the DWP’s lack of action for ESA claimants was a “blatant discriminatory policy”. Wayland said:

    Their claim is ‘we have put our arms around the most vulnerable people’, when they have categorically not done that.

    After 10 years of it, that is what pushed me into it, because I have had enough.

    It was an accumulation of the last 10 years, feeling as though we were being treated as second-class citizens, of years of feeling ignored and treated badly.

    The first stage of the judicial review was supposed to be on 28 and 29 September. But now, the court has delayed the hearing.

    A shortage of judges

    The High Court has now pushed the date back to November. Osbornes Law told The Canary that the court claimed this was due to “judicial availability” – i.e. a shortage of judges.

    Previously, Wayland said the delay further highlighted “the decimation of public services”. When the new court dates were confirmed, he tweeted that:

    My solicitor has confirmed that our new court date will be the 17-18th November. I hope we can end this particular injustice & then focus on all the others we face.

    Writing about the problem in 2018, the Guardian reported that:

    The effective operation of the courts in England and Wales is under threat due to problems of judicial recruitment, increasingly heavy workloads and deteriorating working conditions, according to the lord chief justice.

    At the end of 2019, the Financial Times (FT) reported that the High Court was 10 judges short. There’s also a shortage of district judges. And now, because of the pandemic causing a backlog of court cases, the situation appears to be even worse.

    Years in the making

    But as Crest Advisory noted, the problems with the judicial system have ultimately been years in the making:

    During the ‘austerity’ years, when budgets for policing, the Crown Prosecution Service, probation and prisons contracted sharply, the Ministry of Justice also cut spending on the courts. Between 2010/11 and 2019/20, HMCTS saw its funding fall by 21% in real terms, so the agency had to make savings: it sold off court buildings – half of magistrates’ courts, a-third of county courts and eight Crown Courts were closed – and reduced staff numbers.

    In the 12 months before the first lockdown began, there were on average 16,264 staff employed by HMCTS, 22% less than in 2010/11. There were 3,174 judges at all levels of the civil and criminal courts – 13% down. There had been a particularly steep reduction in the number of judges who carry out the bulk of the work in Crown Courts, where the most serious criminal cases are heard, with 11 fewer circuit judges and 359 fewer recorders – a 29% decline. Over the same period, the number of magistrates – who are unpaid volunteers – plunged by 55%.

    Throwing millions of people under the bus

    As the Mirror wrote, the case affects millions of people. It noted that:

    If the court rules in favour of the claimants, one scenario could see the DWP issue back payments to those affected.

    This would be worth up to £1,500 if the DWP matched the level of support those on Universal Credit received during the pandemic.

    But even if the DWP loses, there is no guarantee of any sort of payout at all – and even if there is, it may not be worth as much as £1,500.

    This is because it would be down to the government to decide how it rectifies to situation, if the hearing goes against the DWP.

    Now, with the court’s delay, these millions of people will have to wait even longer to find out if they are entitled to equal support to other claimants.

    Featured image via Dan Perry – Flickr and Wikimedia 

    By Steve Topple

    This post was originally published on The Canary.

  • NICE is facing a legal challenge over its ME guidelines delay

    The National Institute for Health and Care Excellence (NICE) is facing a legal challenge. It’s over the body’s delay in publishing new treatment guidelines for a chronic and debilitating disease. But as the backstory to this potential court case shows, the chronically ill people at the centre of this scandal have already suffered enough at the hands of the medical and political establishment.

    NICE: in the dock?

    NICE is facing possible court action. It’s over treatment guidelines for myalgic encephalomyelitis (ME). The neuro-immune disease is sometimes called chronic fatigue syndrome (CFS). NICE was supposed to publish the update in August but cancelled the release at the last minute. NICE will be holding discussions with stakeholders and others involved in the guidelines in a few weeks. In the meantime, someone has launched a legal bid.

    Lawyer Peter Todd is representing a client over this. He tweeted that:

    I have today [Friday 1 October] sent NICE a letter before claim under the judicial review pre-action protocol regarding its decision of 17 August 2021 to pause publication of its updated guidelines on the diagnosis and management of ME/CFS…

    The letter before claims seeks agreement by NICE to revert to follow its procedures as set out in its manual no later than noon on Wednesday 6th October 2021, in default of which we intend to issue proceedings asking the High Court to intervene.

    Any roundtable must be held after publication of the guidelines

    What is a judicial review?

    The Courts and Tribunals Judiciary website says a judicial review is:

    a type of court proceeding in which a judge reviews the lawfulness of a decision or action made by a public body.

    In other words, judicial reviews are a challenge to the way in which a decision has been made, rather than the rights and wrongs of the conclusion reached.

    It is not really concerned with the conclusions of that process and whether those were ‘right’, as long as the right procedures have been followed. The court will not substitute what it thinks is the ‘correct’ decision.

    This may mean that the public body will be able to make the same decision again, so long as it does so in a lawful way.

    It should be noted that as The Canary previously reported, in the High Court some cases are being delayed due to a shortage of judges. So, how long this process will take is unclear. Also, if NICE does not adhere to the 6 October deadline, there is still no guarantee that a judge will grant a judicial review, anyway.

    But why is NICE facing this potential legal challenge in the first place?

    A catalogue of disasters

    As The Canary has been reporting, NICE’s delay has sparked anger among the chronic illness community. Its update of ME treatment guidelines has proven controversial. This is because its previous guidelines recommended two treatments based on flawed research. These were graded exercise therapy (GET) and cognitive behavioural therapy (CBT). You can read The Canary‘s full analysis of the NICE guideline update here.

    In November 2020, NICE published the draft of its new guidance. It had removed GET and downgraded CBT from a treatment to a supportive therapy to help patients deal with living with a chronic illness and its symptoms. On 18 August, it was due to publish the final version that medical professionals would have to adhere to. But media reports said that some professional medical bodies like the Royal College of Physicians had refused to endorse NICE’s new guidance. NICE itself said that its final guidelines were not “supported by all”. So it pulled the plug on publishing them.

    NICE later announced it would hold a roundtable meeting with stakeholders in September. This was to discuss how best to move forward. It’s since pushed this back until 18 October. On social media, there have been reports of who will be attending the event. Some people have alleged that certain reported members of the roundtable event, including its chair, have conflicts of interest over the PACE trail, GET, and CBT; that is, they’re proponents or supporters of them. So far, NICE has not confirmed who will be at the meeting.

    The guidelines, leaked

    After NICE announced the delay, a barrister leaked NICE’s finalised guidelines. You can read The Canary‘s full analysis here. In short, NICE’s delay in publication was seemingly due to pressure from people with contentious vested interests – ones which are at odds with the professional opinions of many others. And now, with the full guidelines in the public domain, it’s clear why those with certain agendas lobbied NICE to get the guidelines stopped. And this continuation of what many consider to be abuse of people living with ME has caused widespread distress in the community.

    These guidelines have been riddled with controversy for chronic illness communities. People living with ME have long campaigned against the distress and abuse they suffer from ME treatment options which were based on discredited research. The leak of these guidelines brings forward a whole host of issues:

    • NICE appears to have delayed the publication due to the influence of proponents of certain discredited treatments.
    • It referenced data-led research – potentially another reason why proponents of these treatments may have kicked off.
    • NICE appears to have watered-down its criticism of another one of these treatments.

    NICE’s own credibility hangs in the balance. But now the potential judicial review could once again change things.

    What could the legal challenge hold?

    At this stage, it seems Todd’s client is launching a judicial review on the basis NICE has not followed its own procedures. Many medical professionals have commented on NICE’s unprecedented actions. Professor Ron Davis, an expert in ME, wrote that:

    NICE has completed their objective scientific review. It is a travesty that NICE is being influenced by people with vested interest in maintaining their beliefs in treatments that have long been shown to lack evidence supporting them and have been shown to be harmful to patients. If NICE does not stick to their mission of unbiased evidence based guidelines, then it will lose its credibility.

    In other words, NICE appeared to follow its own protocols on the drawing up of guidelines. The review was complete and ready to be published. Then, due to external influences, NICE changed its mind. Research charity Invest in ME noted that this happened before – but in a different scenario:

    So great was the opposition to the 2007 NICE guidelines that NICE were taken to a judicial review – by patients – a case that was only lost due to machinations behind the scenes by NICE and its legal team. Yet despite the patient objections NICE decided to publish anyway. Therefore, a precedent was set to continue to publish despite one party disagreeing.

    The point being that the basis for the judicial review may be that NICE has not followed its own precedent around creating guidelines and then publishing them.

    NICE says nothing. A person with ME says…

    The Canary asked NICE for comment. But it had not responded at the time of publication.

    Meanwhile Sally Callow, who lives with ME and founded the social enterprise ME Foggy Dog, told The Canary:

    The ME/CFS patient community has experienced neglect and abuse from medical professionals and organisations for many decades. In recent years, the abuse our community has faced on a daily basis has been, and still is, relentless. The NICE ME/CFS guidelines delay was the last straw for many, myself included. To read that a solicitor has started possible legal proceedings is like the sun rising over the horizon. This gives us hope that change may be coming, the tide may finally be turning.

    Why our community needs legal representation to make a medical body abide by their own protocols is beyond comprehension. The updated guidelines are needed immediately; today, in CFS clinics around the UK, patients are being told to participate in GET and CBT. This is despite NICE advising against this in their November draft after reviewing the scientific evidence. This political posturing is entirely down to the proponents of GET and CBT, and nothing will change until NICE update their guidelines.

    While the legal wrangling begins and NICE continues to stall, in the real world people are at risk of harm.

    The harm continues

    On 1 October, The Canary was passed a leaflet from someone living with ME. It showed that a clinic was still offering GET as a treatment. Worse still, the clinic told the person that “CFS” (ME) was a “mental health condition”:

    An image of a treatment booklet for ME/CFS

    As one person asked on Twitter:

    Wondering as a lawyer: if NICE now knows for certain, based on its “rigorous methodology”, that #MECFS sufferers are being harmed by GET – how could they be able to argue in the future that they did not knowingly contribute to the continuation of this harm beyond [18 August]?

    NICE: continuing the abuse

    So now people living with ME, their families, and advocates must wait. Given that the scandal surrounding this disease has been decades in the making, a few weeks may not seem a lot to some people. But for the community subjected to stigma, disbelief, and dismissal by medical establishment, even a matter of weeks is far too long. It’s effectively the continuation of years of abuse.

    NICE must now do the right thing. It must publish the guidelines in full, immediately. Then, it must work to rebuild its reputation. And moreover, it needs to listen to the very legitimate concerns that people in the ME community have, not only about its conduct but about the guidelines overall. Nothing less will suffice.

    Featured image via StevovoB – Pixabay and NICE – YouTube

    By Steve Topple

    This post was originally published on The Canary.

  • Disabled people’s Universal Credit protest pulled no punches

    For the second time in a week, disabled people took to the streets over the Tories’ treatment of social security claimants. This time it was right outside Boris Johnson and Rishi Sunak’s front doors. The protest was partly about the Tories’ cut to Universal Credit – and DPAC’s actions also raise bigger points about the left as a whole.

    Disabled people stage an “audio riot”

    As The Canary previously reported, grassroots activist group Disabled People Against Cuts (DPAC) has been holding a week of action. It’s over the Tories’ £20-a-week cut to Universal Credit. DPAC was also protesting over the Tories’ failure to increase legacy benefits during the coronavirus (Covid-19) pandemic and the Department for Work and Pensions’ (DWP) treatment of social security claimants.

    On Tuesday 28 September, DPAC held an “audio riot”. It was outside Kings Cross station where protesters brought traffic to a standstill:

    A photo of disabled people blocking Euston Road

    The protest aimed to make the public aware of the impact of Tory social security policies on disabled people. It also showed the broader impact of the Tories’ £20 Universal Credit cut and their failure to support legacy benefit claimants. This includes people on Employment and Support Allowance (ESA).

    Universal Credit cut: “devastating”

    The Canary spoke to disability rights activist and DPAC member Paula Peters. She said:

    The £20 uplift cut to Universal Credit will a have devastating impact. With winter coming, mothers won’t be able to afford warm winter clothing and coats for their children, evictions will rise – as will poverty hunger and destitution. It’s the biggest cut to social security since WWII. It’s a travesty.

    But it needs to be also stressed that the Tories completely overlooked and ignored legacy benefit claimants during the pandemic. Many of these 2.2 million claimants are disabled people. Some were also shielding. Living costs rose and disabled people couldn’t afford the most basic standard of living. When you ask disabled people what £20 uplift would mean to them, you hear the same response: everything; life-changing; affording fresh fruit; buying the extra items you need.

    We just want to live with dignity and respect.

    On Thursday 30 September, DPAC went to Whitehall.

    Protest at the heart of government

    First, the group held a protest at the Treasury. It included artwork:

    Other campaign groups were there supporting DPAC too. These included branches of Unite Community and also People Before Profit.

    Outside Number 10

    Next, DPAC moved on to Downing Street. It had banners and signs. These showed what the party has done to social security and its claimants over the past decade:

    A selection of photos of DPAC banners from its protest

    The group blocked the road outside Number 10:

    Enter the disgraced Met

    The disgraced Met police were at DPAC’s demo:

    A photo of police at the DPAC demo

    The demo passed mostly without incident, but police did try and stop DPAC members on several occasions. For example, one officer tried to move them off the road:

    A photo of police trying to move a disability rights protester

    Another tried to stop DPAC speaking. They also tried to quote rules which aren’t even law yet. Peters told The Canary:

    Some Met police officers started quoting the anti-protest laws which are part of the new police and crime bill at us: no megaphones to make a nuisance or make a noise. One of them tried to take the microphone from me. I hung onto it and shouted out we will not be silenced. Officers then reminded their colleague that the anti-protest bill was going through parliament and is not law yet.

    The police and crime bill won’t stop DPAC or anyone else protesting to defend our rights. It will only make us more determined to speak out.

    Overall, the protest was peaceful and the police generally kept their distance.

    The continuing need for protest

    Throughout the week, DPAC has shown a few things. Firstly, and as Peters summed up:

    DPAC’s actions this past week show why it’s important to campaign. We must get the horrendous truth out to the wider public. It must know how devastating the removal of the £20-a-week uplift to Universal Credit will be.

    Our two street actions along with online activity have been for everyone to collectively raise their voices and join in campaigning. It’s important we join together; build a people’s grass roots movement and fight back. What we’ve seen on the streets and the feedback we’ve got is that everyone is in agreement: the cut to Universal Credit is wrong and must be stopped.

    This approach of both on- and offline protest is crucial – as is trying to raise public awareness of issues. But Peters had another point to make.

    How long must this continue?

    As she said on Twitter:

    On 3rd October 2010 [DPAC] marched in the rain at the Tory party conference in Birmingham. 11 years on… disabled people are [still] marching in the rain. Fighting for justice

    However, despite countless protests, UN accusations of abuses of disabled people’s human rights, and around 35,000 deaths on the DWP’s watch, the Tories’ toxic attitude to social security hasn’t changed. It’s the same for housing. The same for refugees. And the same for the NHS – and so on. So, does DPAC, and the left more broadly, need a new approach?

    Ken Loach: the time is now

    As filmmaker Ken Loach told The Canary in a recent interview, in campaign groups like DPAC:

    there’s a great wealth of anger at what is happening, of knowledge of what is happening, of understanding how we have to fight back. And it was united when Jeremy [Corbyn] was leading the Labour Party. The key question now, to me, is how we keep that movement coherent, both inside the party and outside. And I think that is not a political party to get seats, electoral seats, that’s not an electoral process, because that’s been tried and it will tend to fail. But keeping that movement coherent, and united, and identifiable. And to do that, it has to be led by recognisable people that the others will trust and recognise.

    Loach couldn’t answer what that movement would look like. DPAC’s protest showed a promising flicker of this, with other groups supporting it. But Loach warned that if the left doesn’t unite quickly, then the energy Corbyn harnessed:

    will evaporate, and the left will be back to sectarianism, to demonstrating and campaigning, and knocking on the door from the outside.

    Turning “anger into positive action”

    The left broadly needs to start looking at these issues. As Peters summed up:

    Tory government be warned: while we have no justice, you will have no peace. And we will be on the streets. There’s growing anger and hope we can turn that anger into positive action to effect change.

    Change across society is needed – and has been for a long time. Protests like DPAC’s are a crucial part of this. But the left also needs to look at just how we can remain united and map a path for the future. Because so far, it has failed to defeat the Tories. And as things stand, change is still a long way off.

    Featured image and additional images via Paula Peters

    By Steve Topple

    This post was originally published on The Canary.

  • Disabled people brought London to a standstill over Tory Universal Credit cut

    Disabled people brought central London to a standstill on Tuesday 28 September. They were protesting over the Tories’ cut to Universal Credit and the persecution of people claiming other social security benefits. The demo is just one part of a week of action, and the group will be protesting again on Thursday 30 September. This time, they’ll be at Boris Johnson’s front door.

    Disabled people: fighting Tory cuts

    Disabled People Against Cuts (DPAC) is a grassroots activist group. It’s been groundbreaking in terms of its approach to fighting for disability rights. From blocking Westminster Bridge to throwing balls at Boris Johnson via occupying parliament’s central lobby, DPAC has never shied away from taking direct action.

    Most recently, DPAC has been at the forefront of fighting against the DWP’s £20-a-week Universal Credit cut. It will hit various people hard, including 660,000 low-paid key workers, 3.4 million children, and six out of 10 lone parent families. The cut will plunge a further 500,000 people, including 200,000 children, into poverty. Trade unions and campaign groups have expressed fury over the cut.

    Universal Credit: enough is enough

    DPAC has been holding a week of action over the cut and Tory/DWP persecution of social security claimants more broadly. It started on Friday 24 September with an online rally:

    Since then, there have been local demos and events. And on 28 September, the group brought central London to a standstill.

    Rioting with noise

    DPAC held an ‘audio riot’ outside Kings Cross station. It was something that did what it says on the tin:

    Dozens of DPAC members brought banners and protest art:

    Former Labour leader Jeremy Corbyn MP sent a message of support:

    The group blocked Euston Road outside the station to draw attention to the Tories’ actions:

    Overall, the protest was peaceful and without incident. Unlike their conduct at recent Extinction Rebellion (XR) protests, the police seemed unsure what to do with DPAC:

    “United in one voice”

    Disability rights activist and DPAC member Paula Peters told The Canary:

    After 18 months DPAC are back. Loud, proud doing what they do best: being back out on the streets; highly visible to the public. We’re here to show the government that we will continue to speak out on the impact of the £20 uplift cut to Universal Credit. And we’re reminding them that legacy benefit claimants were completely ignored and overlooked in the £20 per week uplift during the pandemic. It was beautiful and overwhelming to have the solidarity from the RMT, Unite Community and many other grassroots campaigns: united in one voice.

    We will not be silenced or stopped from fighting back. It was a great feeling being out doing what DPAC do best: taking direct action to highlight the narrative of the impact of the government policies on disabled people’s lives. Everyone coming together in support and solidarity was wonderful.

    Hitting the streets again

    But DPAC isn’t stopping here. On 30 September at 5:30pm, it and other groups will protest outside Downing Street. As it wrote:

    On the eve of the £20 per week cut to Universal Credit join Disabled People Against Cuts and allies to protest against the government’s removal of the £20 per week uplift to Universal Credit and to demand a fundamental overhaul of the social security system.

    So, it seems DPAC is back with a bang. Given the Tories’ toxic attitude to social security claimants, the group’s direct action is needed now more than ever. And the more support we give, the better.

    Featured image via Paula Peters 

    By Steve Topple

    This post was originally published on The Canary.

  • Marcus Rashford’s Universal Credit intervention adds more pressure on the Tories

    Footballer-turned-campaigner Marcus Rashford has added his voice to the fight against the Tories’ Universal Credit cut. His intervention comes as activists plan protests and more evidence of the cut’s devastating effects has come to light.

    Universal Credit chaos

    The Canary has been documenting the chaos surrounding Universal Credit. The Department for Work and Pensions (DWP) will be cutting £20-a-week from claimants in a matter of days. It will hit various people hard, including 660,000 low-paid key workers, 3.4 million children, and six out of 10 lone parent families. The cut will plunge a further 500,000 people, including 200,000 children, into poverty. Trade unions and campaign groups have expressed fury over the cut.

    Meanwhile, The Canary recently reported that Citizens Advice has warned of more misery for claimants. Its research found that the cut could force as many as 1.5 million working people into hardship this winter. Citizens Advice found that two-thirds of working claimants are bracing themselves to face hardship when the Tories cut Universal Credit at the end of the month. Their financial fears include struggling to pay their bills, getting into debt, or being forced to sell belongings to make up for the shortfall in their income.

    Another quarter of working claimants could face even greater difficulties. Citizens Advice found that as many as 600,000 working claimants are worried they might not be able to afford food or other basic necessities like toiletries after the reduction in their income is introduced.

    Now, Rashford has intervened.

    Enter Rashford

    As part of a campaign with charity the Food Foundation, Rashford is encouraging people to write to their MPs and tell them to end child food poverty. You can use the Food Foundation’s online form to do that here. The letter encourages MPs to support Rashford and the charity’s plan. This includes expanding Free School Meals and funding more free holiday clubs.

    On the Tories’ Universal Credit cut, Rashford told the Mirror:

    Instead of removing vital support, we should be focusing on developing a long-term roadmap out of this child hunger pandemic.

    He added:

    On October 6, millions lose a lifeline. It’s a move that Child Poverty Action Group says will raise child poverty to one in three.

    Rashford is not the only one taking action.

    £20 more for everyone

    Grassroots disability rights group Disabled People Against Cuts (DPAC) is currently directing a week of action over the Tories’ governance. On Friday 24 September, it held an online rally. Speakers included filmmaker Ken Loach and disability rights activist Paula Peters. It’s also holding two protests in a matter of days. On Tuesday 28 September, DPAC is organising an “audio riot” outside Kings Cross station, in the courtyard in front of it, from 11:30am. Then, on Thursday 30 September at 5:30pm, it and other groups will be protesting outside Downing Street. You can find out more here.

    On top of all this, think tank the Resolution Foundation recently issued a stark warning. It said inflation, rising energy bills, the looming rise in National Insurance, and the Universal Credit cut could leave low-income households more than £1,000 a year worse off. That’s even after accounting for increases in the minimum wage. Plus, another study has found that councils could place 1,500 more children into care each year due to the cut. And there could also be 5,500 more children on child protection plans.

    The Tories: changing course?

    Currently, the Tories are not budging. Transport secretary Grant Shapps indicated on TV on 26 September that nothing had changed. But the DWP and the Treasury are reportedly considering changing the rules for working claimants. This could let them keep more of their earnings, though it’ll do nothing for sick and disabled people, carers and lone parents who can’t work, among others.

    However, collective action from Rashford, DPAC and others could well apply enough pressure for a last-minute Tory U-turn. Now, millions of families will wait to see if this happens.

    Featured image via B/R Football – YouTube

    By Steve Topple

    This post was originally published on The Canary.

  • Disabled people are staging a ‘riot’ over Tory and DWP persecution

    Disabled people will be holding a “riot” on Tuesday 28 September. It’s over persistent Tory and Department for Work and Pensions (DWP) attacks on chronically ill and disabled people and social security. But the group organising it won’t be smashing up the streets. Because, instead, this is an ‘audio riot’.

    DPAC is back

    Disabled People Against Cuts (DPAC) is a grassroots activist group. It’s been groundbreaking in terms of its approach to fighting for disability rights. From blocking Westminster Bridge to throwing balls at Boris Johnson via occupying parliament’s central lobby, DPAC has never shied away from taking direct action.

    Most recently, DPAC has been at the forefront of fighting against the DWP’s £20-a-week Universal Credit cut. It will hit various people hard, including 660,000 low-paid key workers, 3.4 million children, and six out of 10 lone parent families. The cut will plunge a further 500,000 people, including 200,000 children, into poverty. Trade unions and campaign groups have expressed fury over the cut.

    And DPAC isn’t happy either. It said that:

    The government isn’t listening… when we say Stop The Cuts to Universal Credit and give #20MoreForAll

    So, the group is back on the streets – and back telling the Tories that enough is enough.

    We predict an audio riot

    DPAC is staging its audio riot outside Kings Cross station on 28 September from 11:30am:

    It said:

    Join our #AudioRiot and make some noise about the devastating changes to benefits which will have a huge impact on millions of peoples lives, including disabled people.

    Bring everything you can that makes noise.

    DPAC will be providing materials for you to take part too – but don’t let that stop you bringing:

    Drums
    Whistles
    Cymbals
    Bells
    Klaxons
    Loudspeakers

    DPAC has issued a health warning about the demo. It said:

    We suggest that people joining in this action bring along ear protection such as ear plugs or ear defenders, it’s going to be extremely loud and it may damage your hearing without protection. We do will have some ear plugs to hand out to those who don’t have them but we only have a small number, so if you can, bring your own please.

    DWP chaos

    It’s targeting the audio riot around several topics, all DWP-related. It wants people to “make some noise about the”:

    • £20 cut to Universal Credit coming in September.
    • Reintroduction of sanctions and conditionality returning in October.
    • Discrimination against those on legacy benefits who never got the £20 to begin with.
    • Minimum income floor, the local area housing allowance and so much more
    • Disgraceful state of benefits in the UK overall.

    There will also be online actions people can take part in. The audio riot forms part of a week of action from DPAC. It starts with an online rally from 7:30pm on Friday 24 September. Local actions will be happening on other days. Then, after the demo on 28 September, DPAC will take the fight to Downing Street. On 30 September from 5:30pm, DPAC and other groups will rally outside Johnson’s front door over the Universal Credit cut. More details can be found here.

    A court case delayed

    Meanwhile, DPAC was meant to be staging a vigil outside the High Court. But this has been cancelled because the court case in question has been delayed:

    The vigil was in support of a legal case. As The Canary previously reported, two disabled people are taking the DWP to court. It’s over the department’s failure to apply the £20-a-week increase seen for Universal Credit to legacy benefits like Employment and Support Allowance (ESA). The case will argue that this is discrimination under the European Convention on Human Rights, because the claimants are disabled people. Osbornes Law is representing the claimants.

    But the hearing has now been delayed. It was supposed to be on 28 and 29 September. But the High Court has now pushed this back to November. Osbornes Law told The Canary that the court claimed this was due to “judicial availability”; a shortage of judges. The Canary will be looking into this further.

    Enough is enough

    DPAC member and disability rights activist Paula Peters told The Canary:

    DPAC has called an #AudioRiot series of online rallies, social media activity and street protest to collectively raise our voices. We want to force the government to listen to the impact of £20 per week uplift cut to Universal Credit will have on millions of families. Also, we want to force it to listen to the #20More4All campaign. Because 2.2 million legacy benefit claimants were not included in £20 uplift during the pandemic.

    Three quarters of legacy benefit claimants are disabled people, many of whom were shielding. Yet the cost of living rose very high: food prices, energy prices, PPE equipment and online delivery shopping costs. This left disabled people having to make stark choices whether to heat their homes or eat. Being unable to meet the most basic of living costs caused further distress when isolated while shielding.

    We are telling the government we will not be silenced on the appalling impact of 12 years of austerity, and the impact of the pandemic which has cost many lives – especially disabled people. So, however people can, support us online and on the street. Let’s make lots of noise and tell this government enough is enough.

    DPAC has a history of inventive direct action. It’s able to raise the profile of surrounding disability rights and social security issues in a way many other groups can’t. So, if you can take to the streets on the 28 and 30 September in solidarity, then do so. Because the Tories and DWP need to know that we won’t take their callousness lying down.

    Featured image via DPAC

    By Steve Topple

    This post was originally published on The Canary.

  • Homeschooling as feminist resistance

    You read that title and choked, right? That’s because, when you think about homeschoolers, you probably think of a conservative family trying to shelter their kids from the pernicious influence of the wider community. You likely imagine a wife who stays home while her husband earns the money.

    So, when I say it’s a feminist decision to homeschool your kids, your immediate response is, “umm, no”.

    In the interests of full disclosure: I consider myself a feminist, and I homeschool. I’m also a researcher who’s interested in why highly educated woman homeschool their children.

    But, this isn’t all about me. It’s about the growing number of feminists who find themselves homeschooling.

    Let’s start with what homeschooling is. Homeschooling is one of the fastest growing educational choices in Australia. The numbers are growing rapidly; in 2020, almost 26,000 young people or approximately six in every 1,000 school aged children in Australia homeschooled. Most homeschoolers have, at some stage, been to school. Families change to homeschool because children have bad experiences ranging from “a bully beat up my kid and nobody helped” to “my kid is Autistic but the school couldn’t help them”. After trying to make it right with the school/s, they end up homeschooling. These points are troubling.

    Most people who wind up homeschooling end up there quite by accident. It could happen to you.

    Interestingly, but probably not unexpectedly, most homeschoolers are women, probably because it’s considered women’s work to educate children. Women do most of the education stuff, such as teaching reading, managing homework and organising children’s social calendars. It’s fair to say, as Waring did, most of this work is unpaid and under undervalued, but should be counted in GDP.

    But, surely homeschooling is even worse? I disagree. One of the main reasons for my disagreement is gender; you can break gender stereotypes if you homeschool. LGBTIQ+ kids homeschool because gender and sexuality are so heavily policed in schools. In everything from the refrain, “that’s gay Miss” to school uniforms, subject selection and teachers’ gender balance, schools teach young people only cis-gendered and straight is acceptable and privileged and being male is the crème-de-la-crème. I met a homeschooling mum a few years ago whose son identified as male but wore the girls’ uniform. She told me he’d been bullied, culminating in his being pushed into the girls’ toilets and urinated on. She brought him home to express his identity freely and without prejudice.

    Rebecca English

    “I consider myself a feminist, and I homeschool,” says Rebecca English. Picture: Supplied

    The biggest issue that is raised in feminist discussions of homeschool is paid work. It’s assumed homeschool mums quit work and depend on their husbands and that affects things like retirement savings but, as research suggests, women who have kids and keep working also suffer. A big myth is that all women quit paid work to homeschool, that’s not true, there are single mums who homeschool, work, and finish graduate degrees. If you have a community, like say other families who homeschool ¯\_(ツ)_/¯, it facilitates women homeschooling and working. I think of the mum, a trained ESL teacher, whose son was still not reading in year 8, in spite of going to one the best private schools in her town, so she did a tutoring course and started her own business to help her son. But, not everyone wants to work outside the home, and isn’t that okay too

    My final point builds on the idea that there are horses for courses, it’s the mantra ‘girls can do anything’. And sometimes that anything is to make the best of your situation.

    If your child is in the position where you have no choice but to homeschool to keep them safe, then you are exercising agency and courage in the face of difficult circumstances.

    I think of the mother whose five-year-old’s severe anaphylaxis meant that even touching the classroom railing caused her to stop breathing. She told me the school’s response was to suggest the child wear five or six gloves and pull them off progressively throughout the day. She took ownership of her situation and decided, if they won’t protect my child, I will.

    Maybe the problem then isn’t homeschoolers; the problem is school not keeping children safe?

    That sounds like a variation on the meme, “you don’t hate Mondays, you hate capitalism”. Because, most of the problems with homeschool are problems with neo-liberal capitalism, with the way the system is organised. Doesn’t that suggest that, if schools were safe and effective, these families wouldn’t be homeschool statistics? But, if families are happy homeschooling, why is it a problem?

    So, rather than going homeschoolers for being anti-feminist and complicit in their own patriarchal oppression, let’s learn a bit about why families do it. And, while we’re at it, let’s unpick the patriarchy in the schooling system, the power dynamic that turns learning into competition, something these homeschoolers are fighting. Let’s reflect on ways we could do education better, and provide options for women who choose to homeschool, so that the agency and power in a decision that radically alters the family – economically, socially and culturally – can be appreciated and applauded.

    Please note: Feature image is a stock photo.

    The post Homeschooling as feminist resistance appeared first on BroadAgenda.

    This post was originally published on BroadAgenda.

  • ‘We are people too’, disabled adults tell government after social care failures

    Disabled working-age adults have said the government needs to recognise they “are people too”, after failures in social care left some with a choice between “heating and eating”.

    Social care

    The government has pledged to invest £36bn to help the NHS recover and reform the adult social care system over the next three years – with social care receiving £5.4bn.

    The plan includes an extension of the Disabled Facilities Grant, which currently offers funding for changes to disabled people’s homes such as adding ramps or a stairlift, but many feel the proposals will offer them little support.

    Emma Blackmore from Bristol was born with congenital rubella syndrome and is deafblind, and said she feels disabled care users have been “put on the back burner”.

    Emma Blackmore (Emma Blackmore/Sense/PA)

    She told the PA news agency:

    Obviously we were given a commitment a few years back and it’s not been followed and when the information came out with what’s been going on with the latest plan, it just shows that we’ve been put on the backburner again

    It could result in people in the social care sector being put in the health sector. It could put our lives at risk because of cuts in services.

    Blackmore volunteers and works for Sense, a charity that supports those with disabilities. She runs an inclusive group for children with disabilities and children of any pre-school age, which had to stop during the pandemic.

    The pandemic also impacted the support she was getting from Guide Dogs UK, such as learning to use a cane to get around, amongst other social care services she used. This resulted in her becoming “really withdrawn” and “anxious”. She added:

    The Government don’t seem to understand that we are people too

    I think the Government should maybe come out and talk to disabled people and see how it is actually affecting us.

    It seems like local charities have done what they can – I have been supported by one in Bristol for sight support… but there is only so much that they can do.

    Blackmore also stressed the importance of making plans and documents accessible to everyone, as she had to ask her boss to simplify the government’s recent plan.

    Dementia study
    Some disabled adults fear the focus of the Government’s plan to tackle social care issues is for the elderly, not disabled people of working age (Yui Mok/PA)

    “Absolute nightmare”

    Deborah, who did not share her second name, told PA she thinks that the government’s social care plan is “concentrated on old people and people who may have their own homes”.

    The 51-year-old from Bury has auto-immune diseases, as well as autism and ADHD, and has been seeking care since 2004. She worked at a probation service office until 2005, when she was medically retired, and said the cost of care has left her with a choice between “heating and eating”.

    She told PA:

    The system for charging is an absolute nightmare – it’s so complex. The councils can charge what they like up to a certain amount and that’s the contribution that people pay for the social care.

    I cannot access any kind of care because I just cannot afford it.

    I became suicidal thinking life just doesn’t have any purpose or meaning for me anymore because I’m sort of trapped at home. I haven’t got a support network and this system is just so brutal.

    A department of Health and Social Care spokesperson said:

    We are investing an additional £5.4 billion over three years to reform adult social care which includes an extension of the Disabled Facilities Grant, enabling more people with disabilities to live independently and in their own homes.

    The Government recognises there is more to do and our objective is to join up the health and care systems through the use of personalised care, which will better meet the needs of individuals and help them live more fulfilling lives.

    We cannot do this alone and are committed to working with care users, providers, and other partners to deliver and build on these plans.

    By The Canary

    This post was originally published on The Canary.

  • Jodey Whiting took her own life after the DWP stopped her benefits. Her family still awaits justice.

    The mother of a disabled woman who took her own life, after the Department for Work and Pensions (DWP) stopped her social security, has expressed her ‘bitter disappointment’ that the High Court will not launch a fresh inquest into her daughter’s death.

    Jodey Whiting

    Jodey Whiting was a 42-year old mother. As The Canary previously reported, she took her own life after the DWP stopped her social security.

    Because the DWP stopped Whiting’s Employment and Support Allowance (ESA), she also lost her Housing Benefit and Council Tax Reduction. Whiting lived with various physical health conditions and mental health issues. These included a brain cyst, curvature of the spine, and bipolar disorder. Whiting was taking 23 tablets a day for her illnesses and conditions.

    She took her own life on 21 February 2017, three days after the DWP made her last ESA payment. This was because she missed a Work Capability Assessment (WCA). According to solicitors Leigh Day:

    • The DWP failed to arrange a home visit for Whiting for her WCA. It arranged an appointment at an assessment centre, despite Whiting’s request for a home assessment because she “rarely left the house due to her health”.
    • It also didn’t take into consideration that Whiting had made the department aware she lived with “suicidal thoughts a lot of the time and could not cope with work or looking for work”.
    • And it did not complete a Mandatory Reconsideration of its decision to stop Whiting’s ESA until after her death.

    In May 2017, a coroner failed to consider any role the DWP and its decisions had in Whiting’s death. So her family and Leigh Day took the matter to the High Court. They were asking for a new inquest into her death. But on Friday 17 September, the court denied her family this justice.

    Denied justice?

    As PA reported, lord justice Warby, justice Farbey and judge Thomas Teague QC – the chief coroner for England and Wales – dismissed Whiting’s family’s claim. They found the original inquest to be sufficient. Farbey said:

    It is not necessary and would not be in the public interest for a coroner to engage in an extensive inquiry into the department’s decision-making…

    The inquest conducted by the coroner was short but fair. It covered the legal ground and dealt with the evidence before the coroner including the views of Ms Whiting’s family.

    It is likely to remain a matter of speculation as to whether or not the department’s decision caused Ms Whiting’s suicide.

    In my judgment, it would be extremely difficult for a new inquest to conclude that the department caused Ms Whiting’s death.

    However, the DWP’s defence of itself during the case was highly troubling.

    35,000 deaths later

    As The Canary previously reported, the department claimed that the mistakes it made in Whiting’s case were not caused by flaws in the benefits system itself. The DWP’s solicitor said:

    People make mistakes. I can understand in this arena and with the tragic events that happened that those failures are highlighted, and rightly so. The system has failed but it does not fail a great many times.

    But as The Canary documented, at least 35,000 people have died on the DWP’s watch since 2011. They died either waiting for the DWP to sort their claims or after it said they were well enough to work or start moving towards work. Moreover, in 2018 alone there could have been 750 (if not more) people who took their own lives while claiming from the DWP. But across five years, the department only reviewed 69 cases of people taking their own lives.

    “Bitterly disappointed”

    PA reported that Whiting’s mother Joy Dove said of the judges’ decision:

    I am bitterly disappointed by the High Court’s ruling.

    More than four years on from losing Jodey the DWP has still not had to answer for the role that I believe they played in her death.

    Despite dismissing my application the judgment makes it clear that the behaviour of the DWP has been shocking and I welcome the High Court ruling that Jodey’s ESA should never been withdrawn.

    This is not the end. I am not giving up and I will continue to fight for justice for Jodey. Thank you to all those that have supported me in this fight so far.

    It’s unclear what the next steps will be for Jodey’s family. But it is clear that the problems within the DWP are systemic – despite what it claims.

    Featured image and additional reporting via PA

    By Steve Topple

    This post was originally published on The Canary.

  • Boris Johnson’s reshuffle is a distraction from the Tories’ war on the working class

    On 15 September, prime minister Boris Johnson began reshuffling his cabinet of senior ministers. This dramatic turn of events coincided with the parliamentary debate on the government’s proposed £20 per week cut to universal credit. Some have speculated that the cabinet reshuffle was a technique to distract the public from the government’s drastic cuts.

    All change
    In spite of the significant changes to the prime minister’s cabinet, people took to Twitter to point out that replacing one Tory with another is fairly inconsequential, as there is no such thing as a good Tory. Rosie Holt shared:

    Another Twitter user simply said:

    Possibly referring to Raab’s comments suggesting that the UK should trade with nations known to violate the European Convention on Human Rights in the name of growth, David Osland said:

    Tweeting a potted history of Truss’ corruption, rapper Lowkey shared:

    Drawing attention to Dorries’ stoking of Britain’s culture wars, Ash Sarkar shared:

    Distraction technique

    The dramatic turn of events coincided with a parliamentary debate on the government’s plan to cut an uplift to universal credit by £20 per week. Arguing that the prime minister’s cabinet reshuffle is simply a distraction from the Tories’ cut to universal credit, Rachel Wearmouth shared:

    National secretary of The People’s Assembly Laura Pidcock added:

    UN special rapporteur on extreme poverty and human rights Olivier De Schutter has written a letter urging the UK government to reconsider the proposed cut. He argues that it may be in breach of international human rights law and is likely to push an estimated half a million households into poverty:

    Sharing a video of her speech at the House of Commons debate – in which she recounted correspondence from constituents on the potentially devastating impact of the cut on their lives – Coventry South MP Zarah Sultana tweeted:

    Highlighting that the £20 per week cut to universal credit will disproportionately impact poor and disabled people, Labour MP for Hemsworth John Trickett tweeted:

    Setting out the impact of the planned cut coupled with the rise in national insurance tax on disadvantaged young people, Howard Beckett shared:

    Summarising the government’s war on the working-class, senior economist Sarah Arnold shared:

    Changes…now the campaign

    On 15 September, Liz Truss replaced Dominic Raab as foreign secretary. The prime minister appointed Raab justice secretary and deputy prime minister. Former education secretary Gavin Williamson, former housing, communities and local government secretary Robert Jenrick, and former justice secretary Robert Buckland lost their roles as cabinet ministers, having all faced scandals over the course of the pandemic. 

    Meanwhile, chancellor Rishi Sunak and home secretary Priti Patel remain in place. Other ministers, including newly appointed housing secretary Michael Gove and culture secretary Nadine Dorries, have moved positions.

    Campaigners from organisations including the People’s Assembly, Black Lives Matter, the National Education Union and Campaign For Nuclear Disarmament are coming together. They’re holding a national demonstration against the government’s “corruption, cronyism and exploitation” during the Tory party conference in Manchester on 3rd October.

    Featured image via Youtube – ITV News 

    By Sophia Purdy-Moore

    This post was originally published on The Canary.

  • The leak of NICE’s finalised ME guidelines exposes the ‘psych lobby’ scandal

    A barrister has leaked controversial guidelines from a government body. The National Institute for Health and Care Excellence (NICE) has been at the centre of a growing storm. This is because it delayed the publication of guidelines for a debilitating illness known as ME, at the last minute.

    NICE’s delay in publication was seemingly due to pressure from people with contentious vested interests; ones which are at odds with the professional opinions of many others. And now, with the full guidelines in the public domain – it’s clear why those with certain agendas lobbied NICE to get the guidelines stopped. But this continuation of what many people consider the abuse of people living with ME has caused widespread distress in the community.

    In short…

    These guidelines have been riddled with controversy for chronic illness communities. People living with ME have long campaigned against the distress and abuse they suffer from ME treatment options which were based on discredited research. The leak of these guidelines brings forward a whole host of issues:

    • NICE appear to have delayed the publication due to the influence of proponents of certain discredited treatments.
    • It has now referenced data-led research – potentially another reason why proponents of these treatments may have kicked off.
    • NICE appears to have bowed-down somewhat over another one of these treatments.
    • There could now be questions over potential legal action.
    • NICE’s own credibility hangs in the balance.
    NICE and ME: a history of controversy

    As The Canary has been reporting, NICE has sparked anger among the chronic illness community. This is because it delayed publication of new guidelines into the treatment of myalgic encephalomyelitis (ME). The neuro-immune disease is sometimes called chronic fatigue syndrome (CFS).

    NICE updating its ME treatment guidelines has proven controversial. This is because its previous guidelines recommended two treatments based on flawed research. These were graded exercise therapy (GET) and cognitive behavioural therapy (CBT). You can read The Canary‘s full analysis of the NICE guideline update here.

    PACE trial

    As we previously wrote:

    GET has been marred by controversy. It was based on the PACE trial. This was a clinical study into ME that the Lancet published in 2011. Its findings into GET and (CBT) as treatment for ME have been widely disputed. One prominent ME doctor called it “scientific and financial fraud”. An MP said it was potentially one of the “biggest medical scandals of the 21st century”. Some of the trial’s authors had conflicts of interest with private insurance companies. The UK social security body the Department for Work and Pensions (DWP) part-funded the trial. This led the MP to say:

    ‘One wonders why the DWP would fund such a trial, unless of course it was seen as a way of removing people on long-term benefits and reducing the welfare bill’.

    Its original authors disagree with the criticisms. But along with the scientific evidence, many patients say that GET and CBT did not help them. Some say it made them worse. In 2017, the US Center for Disease Control (CDC) removed CBT and GET as recommended treatments.

    Leaked: the finalised guidance

    In November 2020, NICE published the draft of its new guidance. It had removed GET and downgraded CBT from a treatment to a supportive therapy to help patients deal with living with a chronic illness and its symptoms. On 18 August, it was due to publish the final version that medical professionals would have to adhere to. But media reports said that some professional medical bodies like the Royal College of Physicians had refused to endorse NICE’s new guidance. NICE itself said that its final guidelines were not “supported by all”. So, it pulled the plug on publishing them.

    NICE later announced it would hold a roundtable meeting with stakeholders in September. This was to discuss how best to move forward. It’s since pushed this back until October. On social media, there have been reports of who will be attending the event. Some people have alleged that certain reported members of the roundtable event, including its chair, have conflicts of interest over the PACE trail, GET, and CBT; that is, they are proponents or supporters of them. So far, NICE has not confirmed who will be at the meeting.

    Now, a former barrister who is also visiting scholar and person with ME, Valerie Eliot Smith, has published the NICE finalised guidelines. You can read her blog here, and the guidelines here. She does not say who gave them to her, but she wrote that she warned NICE she would be publishing them. The guidelines appear genuine. And while some parts haven’t changed from the draft, one major area has.

    Sweeping changes?

    The Canary has analysed both the draft and finalised versions. On a first reading, it appears that NICE’s approach and treatment recommendations for ME have broadly stayed the same; albeit for some changes of phrasing and wording. For example, NICE has expanded the section on pain slightly in the final guidance compared to the draft. The draft section on nausea has been removed completely from the final version.

    But something big has changed between the draft and finalised guidelines – namely NICE’s own reasoning for removing GET and downgrading CBT. At the end of each copy it laid out how it came to its recommendations. And these revisions are perhaps some of the most telling aspects of this story. Because in short, in the final version NICE has been more critical of GET. But it has also watered-down its comments on CBT.

    GET, gone

    For example, the draft guidelines consisted of three paragraphs of NICE’s reasons for its decision to remove GET as a treatment. In the final document, this had increased to six paragraphs. But the stand out difference was in NICE’s view of GET. The draft guidelines stated that:

    the committee considered the benefits and harms associated with graded exercise therapy that had been identified in the qualitative evidence and their own experiences of these types of interventions. They recommended not to offer any programme based on fixed incremental physical activity or exercise, for example graded exercise therapy or structured activity or exercise programmes that are based on deconditioning as the cause of ME/CFS.

    But the final version went much further. For example, it stated that NICE had drawn on both “quantitative” (measurable, data-led) and “qualitative” (patient self-reported) evidence when looking at the “benefits and harms” of GET. The draft guidelines only stated qualitative.

    This is a big change. It could indicate NICE believed come the final version that the data-led, research-based evidence was strong enough to ban GET. Previously, it was relying on patient-led information. NICE also added treatments that are based on “exercise intolerance theories” as being banned, as well as those based on “deconditioning” theories; in the draft it was just the latter.

    CBT: watering-down

    But NICE has done the opposite with its reasoning for downgrading CBT.

    The draft contained five paragraphs of NICE’s reasoning for its changing of guidance on CBT. But the finalised version was reduced to four with some changes. Interestingly, the final guidance included an extra rationale for NICE recommending CBT as a supportive therapy. It stated that it should be used to:

    reduce the distress associated with having a chronic illness

    Also, crucially, the main section on CBT where NICE detailed how it should be delivered has also been watered-down. The final version removed a section where NICE had said in the draft that medical professionals must explain to people with ME that CBT:

    does not assume people have ‘abnormal’ illness beliefs and behaviours as an underlying cause of their ME/CFS, but recognises that thoughts, feelings, behaviours and physiology interact with each other

    takes a non-judgemental, supportive approach to the person’s experience of their symptoms and the challenges these present.

    So, why did NICE increase their criticism of GET? And why did it reduce its criticism of CBT?

    Opening the legal floodgates?

    One possible explanation could be that NICE believed its draft reasoning wasn’t robust enough around GET. The anecdotal harm this therapy has caused patients is well-known (qualitative). There are also the re-evaluations of the PACE trail (some from nearly five years ago) which found GET not to work (quantitative). So, maybe NICE thought it needed to be seen to be giving stronger clarity on why it’s banning GET; possibly to protect itself.

    This would then also explain why certain medical professionals kicked-back against the final guidelines. NICE admitting that there’s quantitative (and historical) evidence that GET is harmful could potentially open up the floodgates for compensation claims against medical professionals. The research on harm is not new. As Lib Dem leader Ed Davey said in 2019:

    Shouldn’t graded exercise therapy be removed as a treatment option even before the NICE guidelines are reviewed? Given the evidence that people are being harmed, isn’t it a possibility that a future court could compensate ME sufferers if they continue to be prescribed GET given we know that evidence, the minister knows that evidence, and medical professionals know that evidence? The idea that the current NICE guidelines are in practice till October 2020, I find quite scary

    He said at the time that the government and its chief medical officer should intervene in NICE. Davey continued:

    There will be a case, in future if [GET] continues… [for] people who are harmed to go to court and to seek compensation.

    CBT: the easy option

    The opposite could be true of CBT. Given it’s a talking therapy where the emphasis is placed on the patient to ‘become their own therapist’, then the likelihood of any successful legal claims could be lower. In the context of ME and GET, CBT has been wrongly (and often harmfully) used to try and cure a non-existent fear of exercise in patients. But CBT as a supportive intervention in ME is not always a bad thing. Prominent ME and CFS practitioner Dr Sarah Myhill noted she has seen patients made worse by CBT, but:

    There is a place for CBT, but only when the underlying physical issues have been identified and only when these physical issues have been, for the most part, resolved. Some patients won’t ever ‘need’ CBT and will happily progress to good fitness levels without this intervention.

    But still, NICE made clear that CBT is not a cure or treatment for the disease. This, combined with its comments on GET and the overall thrust of the finalised guidelines, may show the other reason why some medical professionals kicked-back against it.

    Blowing the ‘all in your head’ argument open

    With its finalised guidelines, NICE essentially said that telling people to exercise (GET) and ‘think happy thoughts’ (CBT) is not a cure for ME. That is, the guidelines have gone some way to dispelling the notion that ME is a psychomatic condition. As The Canary previously reported, this goes against many people with vested interests in keeping ME as ‘all in people’s heads’:

    the story of why exercise and CBT is pushed onto people who are chronically ill is two-fold. Firstly… it’s part of a drive by successive governments to use the NHS to force as many sick and disabled people back to work as possible… GET, CBT, and the idea that if those methods fail the patient isn’t trying hard enough, fits into this. The DWP [Department for Work and Pensions] and doctors can say ‘It’s your fault you’re still ill; therefore we won’t support you any more’. Peak corporate capitalism, you could say. Also, CBT is relatively cheap to deliver – so it’s a win-win in the age of austerity.

    But as well as this, there is the “psychologisation” of physical illness…

    This idea has been around for many years. Essentially, psychologisation means that when a doctor can’t find a physical cause for a person’s illness, then it must be psychiatric. That is, the person’s mental health is causing a physical illness; ‘psychosomatic‘ or, it is ‘all in their heads’.

    The “psych lobby”

    As we noted, many other illness and conditions aside from ME are now treated in the same way: that there is a psychological aspect as to why patients are so ill, and that they need psychiatry to get better. Historically, psychiatrists tried this on AIDS patients, among others.

    In terms of ME, researchers who say GET and CBT work as a treatment have driven this idea. There’s a “boom” industry around treating physical illness with mental health approaches. And we’re now seeing the same for long Covid. As Sarah Graham wrote for iNews:

    Already we’re seeing anecdotal reports from long Covid patients whose alarming and debilitating physical symptoms have been dismissed as “anxiety” or “stress”. Respiratory consultant Dr Asad Khan tells me he and others have been advised to “push through” their long Covid symptoms with exercise, despite the evidence that this approach is ineffective for similar energy limiting conditions like ME.

    Meanwhile, the British Psychological Society proposed, and then withdrew, plans for “psychological screening that might predict long Covid”; seemingly retracting this after push-back from social media and its own member networks.

    So, for NICE to undermine what some people call the “psych lobby” in the UK was always going to be contentious.

    NICE says…

    The finalised NICE guidelines are not without fault. You can read The Canary‘s full analysis of them here (when NICE published the draft version).

    The Canary asked NICE for comment. We specifically wanted to know more about why it delayed both the publication of the guidelines and the round table event and what its criteria was for appointing members to the round table event and a general comment on the leak. A spokesperson told us:

    We are aware of the level of interest from the myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) community and are bringing together representatives from patient organisations and charities, relevant professional societies and from NHS England and NHS Improvement, NICE and the guideline committee next month to discuss a way forward.

    NICE is keen to move forwards as quickly as possible. However, we recognise that in order for the meeting to be effective, it is important to fully understand the issues and concerns that all groups attending wish to raise. We are also aware the difficulty of holding a meeting at short notice in September created for attendees who would have been unable to make the original date.

    The roundtable event will have an independent chair and its aim is to allow us to better understand the issues raised and determine how to ensure effective implementation for the guideline.

    We remain optimistic that we can reach a way forward to publish a guideline that will have the support of people living with ME/CFS, the people who care for them and the professionals who treat them.

    NICE: “fatally flawed”

    With the delay of the publication and the kick-back from some medical professionals, it’s clear that even NICE’s light-touch approach to altering views on ME was a step too far for some. And its delay in publishing the final guidelines have caused further anger and distress to an already traumatised community. Eliot-Smith told The Canary:

    Four years ago, NICE began the process of updating the existing 2007 guideline for “ME/CFS”. Reports from those involved suggest that NICE has made great efforts to facilitate a fair and transparent process from the outset. However, that approach changed abruptly when general publication of the final version of the new guideline was “paused” at the eleventh hour on 17 August 2021.

    The process was instantly thrown into chaos and confusion. Media reports suggest that this sudden change of attitude occurred as a result of external interference, something which NICE had previously resisted. Of even greater concern is the imposition of a complete information blackout on everything that takes place from now on.

    Despite the wide discretion it enjoys as a public body, NICE has now sacrificed its independence. In the absence of an adequate explanation clarifying and justifying its extraordinary actions, the entire process has now become fatally flawed.

    This leaves an already traumatised international ME patient community in a state of extreme distress with no end in sight to the long wait for a guideline which better reflects the devastating illness that many have lived with for decades.

    Eroded trust

    Eliot-Smith continued:

    A new guideline does not become operative unless and until it is published by NICE.

    The purpose of [me] making this “final” version of the guideline available now is to provide essential information to the public about the guideline as it stood on 17 August 2021 and as a comparator with any future versions that may be released at a later date.

    It’s difficult to see how NICE can resolve this situation. Either it bows down to the “psych lobby” and completely discredits itself, or it become a rogue unit in the eyes of parts of the establishment. As Eliot-Smith wrote, its decision to delay publication could have huge implications:

    • How many ME patients will have started a programme of treatment, as recommended by the “current” (ie. 2007) NICE guideline for “CFS/ME”?
    • How many of these patients will go on to experience severe harm and setback as a result of undertaking such treatment?
    • How will NICE compensate those patients for the harm caused by the delay in publication?

    Moreover, NICE has eroded people’s trust in it. As journalist George Monbiot said, it:

    has to decide whether it’s a science-based organisation, or whether it’s beholden to a lobby group that refuses to let go of dangerous and long-discredited quack “treatments” for ME/CFS. Its credibility hangs on the outcome.

    There are wider issues too. Not least is that some frontline patient advocacy groups have signed gagging clauses in contracts with NICE process. It was so they could be stakeholders in the guideline process. But now, with the situation critical, these advocacy groups can no longer effectively advocate for people with ME.

    Lobbying: infecting every corner of society

    Ultimately, what the situation with NICE and the guidelines show is the power that’s exerted by a small group of people. In some respects, this is another example of how lobbying by people with vested interests infects every area of our democracy. But moreover, it represents a continuation of the abuse by the medical establishment towards people with ME; abuse they have suffered for decades. NICE seems either completely ambivalent to this, or intentionally exacerbating it.

    Now, with the final guidance in the public domain – the next move is NICE’s. Will they capitulate to those who want ME and countless other illness psychologised? Or will the organisation stick to standards of rigour, evidence, and independence? At this point, it’s hard to tell either way.

    Featured image via Valerie Eliot-Smith – screengrab and NICE – YouTube

    By Steve Topple

    This post was originally published on The Canary.

  • DWP boss ‘lies’ about Universal Credit cut live on TV

    Department for Work and Pensions (DWP) boss Thérèse Coffey sparked anger on Monday 13 September after appearing on BBC Breakfast. She was talking about the Tories’ £20 a week cut to Universal Credit, and one of her comments stood out. That’s because people accused her of either lying or not understanding the social security system.

    Universal Credit chaos

    As The Canary previously reported, in April 2020 the DWP increased Universal Credit by £20 a week. This was due to the coronavirus (Covid-19) pandemic. But chancellor Rishi Sunak and the DWP only made the increase temporary. From 6 October, the Tories will cut £20 a week from Universal Credit claimants.

    This cut will hit various people hard, including 660,000 low-paid key workers, 3.4 million children, and six out of ten lone parent families. The Joseph Rowntree Foundation (JRF) warned that:

    Half a million more people are set to be pulled into poverty, including 200,000 children.

    But so far, the DWP has refused to budge. Most recently, as The Canary reported, even the government’s own analysis shows that homelessness, poverty, and foodbank use will all rise because of the cut. Yet on 13 September, Coffey was still defending the indefensible.

    Coffey: defending the indefensible

    She was on BBC Breakfast essentially telling those affected by the cut to work more. She said:

    £20 a week is about two hours extra work every week. We’ll be seeing what we can do to help people perhaps secure those extra hours.

    Coffey then rambled about the £20 a week being a “temporary uplift”. So suck it up, poor people:

    Coffey left social media users unimpressed.

    Lies? Or just clueless?

    Several people accused her of lying. And one Labour politician summed up why. As Trafford councillor James Wright explained:

    Wright was not the only person who spotted this. Torsten Bell from think tank the Resolution Foundation put the number of hours even higher. He said if someone was on the National Living Wage (NLW) they’d have to work nine extra hours a week to make up for the £20 cut:

    And it’s true for many claimants. As the DWP notes, Universal Credit has Work Allowances built in:

    A work allowance is the amount that you can earn before your Universal Credit payment is affected.

    The monthly work allowances are set at:

    £293 If your Universal Credit includes housing support

    £515 If you do not receive housing support.

    The DWP says:

    for every £1 you earn over your work allowance (if you are eligible for one) your Universal Credit will be reduced by 63p.

    This is what Wright, Bell and others were talking about. So, either Coffey was lying, or she forgot about her own social security rules.

    DWP: conscious cruelty

    DWP work allowances and deductions won’t affect some people. For example, people who are not working and who the DWP says don’t have to carry out or look for work. Often these are chronically ill and disabled people. So for them, they have no way of even starting to make up the loss of the £20 a week cut. None of this includes people on other social security like Employment and Support Allowance (ESA). The DWP didn’t give them any more money in the first place.

    Despite all evidence for the awful position in which the Universal Credit cut will put countless people, the DWP and Tories look set to go ahead with it. This is also despite the original £20 uplift itself being inadequate to begin with. Moreover, when former DWP boss Iain Duncan Smith began launching Universal Credit in 2010, he shouted about how it means:

    it will always pay for you to take a job.

    The fact that people will have to work up to nine hours to make up a loss of £20 shows what a nonsense this was.

    The Tories’ cut can only be called conscious cruelty, and a looming disaster, for potentially millions of people.

    Featured image via VideoBlogg Productions/The Canary, Wikimedia and Sky News – YouTube

    By Steve Topple

    This post was originally published on The Canary.

  • The DWP faces a third court case over Universal Credit discrimination

    The Department for Work and Pensions (DWP) is facing court action over Universal Credit. The legal challenge by claimants is the third such time the department will have been in the dock on this specific issue.

    Four years of Universal Credit chaos

    Enhanced Disability Premiums (EDP) and Severe Disability Premiums (SDP) are social security payments. The DWP gives them to disabled people with high support needs. But, if you have to start claiming Universal Credit, these allowances don’t exist. Instead, claimants get different payments based on their circumstances. For some people, this meant they lost money. As The Canary first reported in 2017, there could be claimants losing thousands of pounds a year. So, two disabled claimants have repeatedly taken the DWP to court over this.

    As The Canary reported back in 2018, the initial case was brought by two claimants, known only as TP and AR. Law firm Leigh Day represented them. TP is terminally ill, living with non-Hodgkin’s lymphoma and Castleman’s disease. In November 2016, the DWP started paying him EDP and SDP. This was because he lived alone with no support. On his doctors’ advice, he moved to London. Because he had a change of circumstance (his address), he had to make a new claim to the DWP which saw him moved on to Universal Credit. Leigh Day claims TP then lost around £180 a month.

    The DWP had put in place so-called ‘transitional protections‘. It claimed these would protect claimants from losing money by topping up their payments. But these ‘protections’ don’t protect everyone. Not least, they don’t apply to claimants who’ve had a change of circumstance. Nor do they apply to new claimants. And they never covered the full £180.

    The DWP in the dock

    So, court cases and appeals followed. A judge in the first case ruled that the DWP was discriminating against some severely disabled people. The judge in the case said:

    The implementing arrangements do at present give rise to unlawful discrimination contrary to article 14 ECHR… A declaration will be granted that there is unlawful discrimination.

    The DWP tried to appeal the ruling twice and lost both times. So, it had to change its policy and made backdated payments to people affected. But it only added an extra £80 a month to Universal Credit and people affected. TP, AR, and Leigh Day challenged this in court and won again. The DWP was forced to increase the amount to £120. But this still doesn’t cover the full loss of social security for some claimants. So, TP, AR, and Leigh Day are taking the DWP back to court once again.

    A judicial review

    They’re bringing a judicial review against the department. It will look at whether the DWP’s decision to only increase some severely disabled people’s Universal Credit payments by £120 is lawful. The claimants argue it should be the full £180. This would mean that financially no-one loses out by moving on to Universal Credit.  As Leigh Day said in 2020:

    The issue in this third claim is whether £120 a month in transitional payments constitutes unlawful discrimination because those people who moved onto UC before 16 January 2019 are still around £60 a month worse off. On 16 January 2019 the SDP Gateway came into force which prevents any further severely disabled benefits claimants from being forced to move onto Universal Credit until they are subject to a managed migration process which maintains their level of benefits.

    The High Court will hear the case between 19-21 October 2021. But TP and AR’s action has also sparked a larger court case.

    An ongoing group claim

    Leigh Day is representing 275 severely disabled people who lost out in similar ways to TP and AR. As The Canary previously reported, it’s specifically for people who made a claim for Universal Credit before 16 January 2019 and were claiming EDP or SDP before that (16 January 2019 was when the DWP brought in new rules under the SDP Gateway). Leigh Day said of the group claim:

    The claimants are asking the [DWP] for compensation equal to the amount of money they have lost following their transfer to universal credit, for their previous level of benefits to be restored and maintained until a lawful migration scheme is established, and for compensation for the stress they have been caused.

    “Difficult to believe”

    Leigh Day told The Canary that the group claim was ongoing but paused (‘stayed’) while TP and AR’s new cases is heard. AR said in a press release:

    Yet again I am having to go to court and fight for what is fair. Over the last years I should have had much needed support in place to help me get through the challenges I face on a daily basis as a result of my disabilities, but instead I have had to put time and energy into fighting for that support. I hope this is the last time we have to fight the [DWP] for support that is so obviously needed.

    Leigh Day solicitor Tessa Gregory said:

    It is difficult to believe that our clients have been forced to bring a third set of legal proceedings against the government in order to ensure they and thousands of other severely disabled persons are not unlawfully discriminated against following their move on to Universal Credit. Those affected are some of the most vulnerable individuals in society and the Government should be ensuring they are fully supported, not seeking to again short change them, this time by around £60 per month.

    If in October a judge agrees with TP, AR, and Leigh Day, then once more the DWP could be facing pay-outs to countless severely disabled people. So, this case is important and The Canary will continue to monitor the situation.

    Featured image via StevovoB – Pixabay and Wikimedia

    By Steve Topple

    This post was originally published on The Canary.

  • A court case just forced the DWP to change Universal Credit rules

    A court case has forced the Department for Work and Pensions (DWP) to changes its rules. It surrounds the department issuing sanctions and taking money off people. But in reality – it was the DWP not following its own rules in the first place.

    Hardship payments

    The DWP offers hardship payments to some claimants. As the website Turn2Us noted:

    Hardship payments are reduced-rate payments of jobseeker’s allowance (JSA), employment and support allowance (ESA) and universal credit (UC) that are made in limited circumstances, including if you have been sanctioned.

    In short, hardship payments are what the DWP gives you if it sanctions but you’re too poor to live without money. For Universal Credit claimants, the DWP calculates a daily rate for hardship payments. In the case of sanctions, Turn2Us noted this as 60% of the sanction amount and that:

    Important: Hardship payments… are recoverable so you must pay them back.

    But now, a court case led to the DWP admitting this is not necessarily always the case.

    The DWP: rogue sanctions

    The Public Law Project (PLP) took on the case of a Universal Credit claimant who the DWP had sanctioned six times. As it noted, its client was:

    a vulnerable care-leaver with physical and mental health problems and experience of domestic abuse.

    The PLP said the DWP “unfairly sanctioned” her. It left her to live “on reduced benefits for over a year and a half”. Some of the DWP’s actions included sanctioning her for:

    • Not attending an appointment when she was at a funeral.
    • Missing appointments because she couldn’t afford the bus fare. This was due to Universal Credit’s built-in five week wait for a first payment.

    So, the PLP supported the claimant with an appeal in 2020. She won this and the DWP had to pay her back the money. But then, there was another issue.

    Waiving debt

    During the time the DWP sanctioned her, the claimant applied for and received hardship payments. As the PLP said:

    she was left in debt which included [hardship payments] that were taken on to cover her basic needs during the period of sanctioning.

    So, the PLP started judicial review proceedings over this. At first, the DWP refused to waive its client’s debt. But after the PLP threatened to take the judicial review further, the DWP caved in. It wrote off the hardship payment debt.

    Because of the case, the DWP changed its guidance. And this is the crucial part for countless claimants.

    An important move for claimants

    The DWP has admitted that its recovery of hardship payments due to sanctions was always discretionary. That is, claimants can ask it to waive the debt caused by them. This is even if a claimant has signed a declaration saying they will pay the DWP back the hardship payments. As the PLP noted:

    This choice applies in all cases, including where the individual’s sanction has been subsequently overturned, for example following mandatory reconsideration or a tribunal appeal.

    But the DWP’s own guidance did not previously say this. So, it was giving out the wrong information to both claimants and staff.

    Thanks to both the PLP and the claimant in its case – everyone claiming Universal Credit should now be aware that the DWP’s recovery of hardship payments is discretionary. And if the DWP still refuses to waive them? Then the PLP said it may be able to help. You can email them via enquiries(at)publiclawproject.org.uk

    Featured image via Dan Perry – Flickr and Wikimedia 

    By Steve Topple

    This post was originally published on The Canary.

  • Spending on disabled care in the North £2,700 less than national average

    Social care spending on disabled people in northern England is almost £3,000 less per person than the national average, a new report has said.

    Levelling down

    In the North, councils spend £21,254 per person on social care for disabled, working-age people, according to a report from think tank the Institute for Public Policy Research North (IPPR North). This figure is £2,736 less than the average for the whole of England. That gap reaches £9,256 per person when comparing the North East, where spending is lowest, with the East of England, where it’s highest.

    The report, which examines the effect of coronavirus (Covid-19) on regional inequalities, noted that regional differences in wages may be partially responsible for the gap between North and South, but added it’s “unlikely to be the only rationale for the significantly lower spend in the North”.

    The report said there were “numerous other variables at play”, including:

    the role of increasingly cash-strapped local authorities in making decisions about budgets and services, as well as the lack of national oversight to ensure consistent commissioning of services.

    These differences amounted to a “postcode lottery”, the report added, which may have been exacerbated by differing responses to the pandemic.

    Failure to protect

    Erica Roscoe, one of the report’s authors, said:

    National policy in the UK has failed to protect people who need it most.

    For decades, disabled people across the country have found themselves disproportionately affected by multiple inequalities, including our undervalued and under-resourced social care system, and our alarming regional divides.

    Now, during the pandemic, those injustices are deepening. This is bad news for everyone, whether disabled people or not.

    She added:

    It is incumbent upon every single decision-maker, from local councillors to the prime minister, to recognise the unique experiences of disabled people living in regions like the North.

    It is time to ensure that disabled people have the opportunity to live a good life.

    As well as the impact on social care spending, the IPPR North report said the pandemic had exacerbated inequalities in disabled people’s access to healthcare, employment, and education.

    By The Canary

    This post was originally published on The Canary.

  • If you live with ME, long Covid, or other chronic illness, it’s time to fight back

    THE AUTHOR OF THIS ARTICLE IS A CO-FOUNDER OF THE CHRONIC ILLNESS CAMPAIGN GROUP

    There’s been scandal in recent weeks over the National Institute for Health and Care Excellence (NICE) delaying the publication of guidelines for the treatment of people living with myalgic encephalomyelitis (ME). This kind of abuse is nothing new in the chronic illness and disabled communities. So, a new campaign group aims to tackle this systemic problem with direct political action – starting on 20 September outside NICE’s front door.  And here’s why chronic illness is a totally political issue.

    The Chronic Collaboration

    Myself and my partner Nicola Jeffery have launched the Chronic Collaboration (website coming soon). It’s a new campaign group – check out its Twitter here. As we stated on Twitter, it aims to be:

    A new resistance movement for chronically ill & disabled people. Joining the dots between conditions. Resisting psychologisation. Fighting for justice & equity.

    It’s early days yet. But through lived experience of chronic illness and learned approaches from other types of activism, we aim to change the way our community fights for its rights. First in our sights is NICE delaying the guidelines.

    NICE: causing anger and distress

    NICE has caused anger and distress across the ME community. In short, there appears to be a problem over a contentious treatment for ME. It seems that some medical professionals who support a controversial style of treatment have objected to NICE removing it from its new guidelines. That treatment is called graded exercise therapy (GET). You can read The Canary‘s full report on the delay of the ME guidelines here.

    GET is at the centre of this story. It’s where doctors tell people living with ME to do gradual increases in exercise to improve their condition, but it’s been marred by controversy. It was based on the PACE trial, which was a clinical study into ME that the Lancet published in 2011. It said GET and cognitive behavioural therapy (CBT) worked as treatments for ME. But its findings have been widely disputed. Many patients and doctors have said that both treatments are potentially harmful or did not improve people’s conditions. You can read more about GET, CBT, and the PACE trial here.

    “The tail wagging the dog”

    So, as Sian Leary wrote for Disability Rights UK:

    just a few hours before it was due, the NICE Executive put out a statement saying they needed to “pause” publication. It became apparent that two Royal Colleges (the membership organisations for UK health professionals) were opposing implementation of the new guideline. They believe that graded exercise therapy should be recommended in the guideline, despite the committee’s thorough review of the evidence. …

    Why are NICE allowing the Royal Colleges to have this sway when they have completed their own full, systematic review? It is the tail wagging the dog.

    Part of the problem surrounding the PACE trial and ME is arrogant doctors thinking that they know better than anyone else and being unable to admit they were wrong.

    But this is only one aspect of it. Because the story is ultimately a political one. And if you think it isn’t, then you really need to think again.

    Chronic illness: a political issue

    For example, one prominent ME doctor reported the PACE trial authors to the regulatory body, accusing them of “scientific and financial fraud”. An MP said it was potentially one of the “biggest medical scandals of the 21st century”. Some of the trial’s authors had conflicts of interest with private insurance companies. The UK social security body the Department for Work and Pensions (DWP) part-funded the trial. This led one MP to say:

    One wonders why the DWP would fund such a trial, unless of course it was seen as a way of removing people on long-term benefits and reducing the welfare bill.

    PACE trial’s science was so bad that some university lecturers teach it as an example of how not to conduct research. Yet its approach has infested other areas of medicine. As I previously wrote, the NHS says that doctors should treat numerous (sometimes genetic) illnesses and conditions with CBT and exercise therapy. Now, doctors are also subjecting people with long Covid to PACE trial-style treatment. The common theme? Most of these illnesses (and ME) have no recognised cure. So, the NHS lumps everyone in together and offers exercise and CBT.

    Much of the corporate media also toes the line over the PACE trial. As I previously wrote, PR organisation the Science Media Centre (SMC) is central to UK press coverage of ME. It issues statements in response to medical research. But it also ‘seeds’ (plants) stories in the media (including the BBC). It has a network of journalists it works with. Major corporate media outlets also fund it. So, from articles defending the PACE trial authors to supporting its findings, the SMC and the corporate media often work hand-in-glove.

    All these are examples of ‘how’ ME and PACE trial are political issues. But why?

    Again: it’s political

    For me, the story has various parts. You can read more about them via the links below:

    • As I have repeatedly written, PACE trial is part of a drive by successive governments to reduce the UK social security bill.
    • CBT is relatively cheap, so it reduces the NHS bill. It also puts the responsibility on the patient for their recovery – so when they don’t get better, ‘it’s their fault’.
    • It’s an issue of class: poor chronically ill and disabled people are not useful to the capitalist system.
    • Systemic misogyny: allegedly ‘hysterical‘ women make up the majority of ME patients.
    • The ruling class in bed with each other: the PACE trial proponent Simon Wessely has a knighthood and led the UK-government’s 2018 review of the Mental Health Act.

    So, ME and PACE trial are political issues. And political problems need political approaches.

    Enough is enough

    The time for just doing petitions and letter-writing is over. Given that NICE has seemingly bowed down to the vested interests of the system, what’s been done before this point clearly hasn’t worked. The situation is similar in the US, where ME advocacy groups have been petitioning and letter-writing to the Centers for Disease Control and Prevention (CDC) over it’s views on the PACE trial – and it did little, if nothing, to change the CDC’s mind.

    So, the approach to NICE – and the scandal of ME and chronic illness more broadly – needs to be more like the direct action carried out by other groups like Disabled People Against Cuts (DPAC), Extinction Rebellion, and so on. Being ‘nice’, for want of a better phrase, has so far not worked. Disruption is needed. Change has seldom been won by writing letters and signing petitions.

    That’s partly why we’ve formed the Chronic Collaboration; it’s also going to be about more than this, but that will follow.

    On 20 September, we and our allies will be protesting outside NICE HQ in Stratford, East London. Note the use of the word ‘protest’. This is not a vigil where we’ll be having a minute’s silence or reading poetry. This is a demo to make it very clear to NICE the physical and emotional hurt, distress, and anger it has caused chronically ill people.

    A poster which says the following: #ProtestNICE4ME: DELAYING THE ME/CFS GUIDELINES IS UNACCEPTABLE! MONDAY 20 SEPTEMBER. 1PM. 2 REDMAN PLACE, LONDON, E20 1JQ. CAN YOU MAKE IT? CAN SOMEONE BE THERE FOR YOU? IF NOT, TAKE A PHOTO OF YOURSELF FOR US TO USE. SHARE USING #ProtestNICE4ME #PublishThatGuideline EMAIL IT TO US: hello@thechroniccollaboration.com

    More details will be announced soon.

    The community needs allies

    But of course, people living with ME and other chronic illnesses often can’t protest in person. If you can’t attend, and someone can’t attend on your behalf, we still want to see you there. Email a picture of yourself to hello(at)thechroniccollaboration.com and we’ll make sure NICE sees your face.

    The community needs allies. This is why we want as many people to support this as possible: from NHS workers to other chronically ill and disabled people via non-disabled campaign groups, MPs, and well-wishers. Chronic illness doesn’t discriminate (even if the system does). With the emergence of long Covid, more and more people are affected. It could be you next – or someone you know and love.

    Moreover, the abuse of people living with ME and other chronic illnesses sums up the problems with the system: where an elite few have power over the rest of us – ultimately to all of our detriment.

    So, we ask you to join us on 20 September at 1pm outside NICE HQ. Enough really is enough. Let the fightback against the PACE trail – and the system’s treatment of chronically ill people – begin now.

    Featured image via the Chronic Collaboration 

    By Steve Topple

    This post was originally published on The Canary.

  • Meet the secretive DWP ‘hit squad’ trawling through Universal Credit claims

    There’s scandal brewing around the Department for Work and Pensions (DWP). This is due to a secretive, newly formed ‘unit’ reportedly taking money due to overpayments from Universal Credit claimants. But it seems the DWP may be flouting the law when clawing back money from people – in some cases to the tune of nearly £14,000.

    DWP coronavirus chaos

    At the start of the pandemic, the DWP limited claimant access to its Jobcentres. As The Canary reported at the time, this had implications. For example, people may not have been able to prove how many children they had, what their housing costs were, and so on. This is because usually would take documents into a Jobcentre to prove these things. So, the DWP accepted what claimants told them online.

    Now, it’s come to light that the DWP is starting to trawl through its records. It’s set up a dedicated unit to do this. It’s checking people who didn’t physically prove elements of their claim. And this information only came to light because of a Freedom of Information (FOI) request.

    Enter the “Repair Team”

    In March, someone called Andy Pennington asked the DWP about its so-called “Repair Team” or the “Retrospective Verification Team”. He wanted to know what information it held on this unit which was checking people’s claims. Pennington noted that the Repair Team was:

    tasked with looking at every single claim and asking for the information to now be provided [that couldn’t be physically proven before].

    The DWP responded. It said that it could not give Pennington all the information. This was because if it did it:

    would be likely to prejudice the prevention and detection of fraud and crime.

    But the DWP did say that:

    when Universal Credit applications were made in the initial period of the pandemic, customers were advised that their application was being accepted under specific COVID 19 regulations and that the Department would contact them at a later date and ask for evidence to support their application.

    We are now re-visiting those cases and are re-applying the verification standards that would have been in place at the time, had it not been for COVID-19. If the evidence does not support the application it will be reviewed and revised to the correct entitlement and, where appropriate, an overpayment calculated and put into recovery.

    1,400 snoopers

    In June 2021, the DWP gave more detail on this to parliament. The Public Accounts Committee noted that the DWP said that of Universal Credit claims:

    those early cases where payments were made without having satisfactory data were flagged for review and it now has a team of 1,400 people methodically going through those cases, one by one, to put them right.

    So, the Repair Team does exist and has about 1,400 DWP staff working for it. Since then, reports have come to light of the unit’s work. And people are already flagging concerns over it.

    A “hit squad”

    The website rightsnet is a social security forum and news site. Among others, it’s used by welfare advisers from charities like Citizens Advice Bureau to share information and best practice. It’s there that a discussion among advisers has started over the Repair Team. People are talking about clients who the unit has taken money from.

    One Citizens Advice advisor called it a “hit squad”. Others shared examples of cases where the Repair Team had got involved. One claimant had to pay back over £4,000. The DWP told another claimant that it had overpaid them by nearly £14,000 – and they had to pay this back.

    People are already questioning the legality and procedural correctness of the Repair Team’s actions. For example, the claimant hit with a £4,000 bill asked the DWP for a Mandatory Reconsideration of its decision. It didn’t grant them one. So, the Citizens Advice advisor has taken the claimant’s case straight to the Tribunal Service. This case points to the potential wider problems with the Repair Team.

    Ignoring the rules? Or no rules at all?

    Some of the Citizens Advice advisors think the DWP is ignoring or not following legislation; that is that it’s acting unlawfully. As the DWP claimed, people not having to provide physical proof (verify) parts of their claim was in line with Covid-19 emergency legislation; as was the DWP saying that it would be checking people’s claims eventually.

    An FOI has shown that the DWP appears to either not know, or is – as one Citizens Advice advisor put it – ‘refusing to answer’ exactly what legislation its referring to. Because, in response to an FOI, it pointed to coronavirus legislation which makes no mention of the easing of verification processes. So, The Canary searched for the correct legislation. But it appears not to exist. As Elliot Kent from the charity Shelter noted on rightsnet, the easement of the claimant verification process:

    was not based on any new statutory power or decision making process; it was just updated guidance.

    So, if there was no coronavirus legislation for claimants being able to claim Universal Credit without providing evidence, under what laws is the DWP now trying to recover overpayments from people?

    Grey areas

    This is where the Repair Team appears to be treading on thin ice. Because it seems to be flouting existing rules. As Kent pointed out:

    where DWP has simply failed to request evidence which it now considers appropriate, it is difficult to see what legal basis exists for the awarding decisions to be revised if that evidence is not now provided…

    Additionally, whilst the DWP is entitled to request evidence in relation to a past period, the failure to provide that evidence does not, of itself, entitle the DWP to revise the award or generate an overpayment.

    Unlawful actions?

    He then went further, highlighting the fact that the Social Security Administration Act 1992:

    authorises the recovery of amounts in excess of entitlement (i.e. overpayments). What it does not do is to authorise revision of decisions so as to change the claimant’s entitlement and therefore create an overpayment. If the underlying entitlement decision has not been lawfully revised, then there is no payment in excess of entitlement so there is no overpayment to recover.

    In other words, the DWP cannot claw money back from claimants by simply changing their social security award. That is, the DWP should be following the rules around changes of circumstance, reviews, Mandatory Reconsiderations, and so on. Instead, it’s simply telling claimants their awards are wrong, changing them, and then hitting them with an overpayment bill.

    Kent did highlight one instance where this may not be the case – in terms of, for example, a claimant claiming they didn’t have capital over £16,000 when they actually did. But even with this, he noted that the regulations state:

    the failure to provide the information could provide sufficient grounds to end the entitlement going forward but not to create an overpayment; however the claimant actually possessing the capital may provide a basis for revision of the earlier entitlement decisions and the imposition of an overpayment.

    Moreover, it appears that the DWP is going back on a pledge it previously made.

    Backtracking on pledges

    Legally, the DWP is allowed to collect overpayments that are its fault. But in 2011, it said it didn’t have to do this.

    At the time, the process of starting Universal Credit was in motion. In May 2011, former DWP minister Chris Grayling gave evidence to parliament’s Public Bill Committee. He said that for overpayments which were the DWP’s fault (known as “official error”):

    The practical reality is that we do not have to recover money from people where official error has been made, and we do not intend, in many cases, to recover money where official error has been made. There will be an absolutely clear code of practice that will govern the circumstances in which recovery action will or will not be taken, to ensure consistent, considered decision making.

    Fast forward to August 2021.

    Millions in mistakes

    The DWP revealed in an FOI that between 1 April 2020 and 31 March 2021 the DWP made a staggering 337,000 overpayments where the mistake was its own. The value of these was over £228m. But the DWP also revealed that it only waived around 10 of the 337,000 overpayment recoveries. This is despite what its former minister told parliament in 2011. The value of these waivers was £22,000. So, that’s 0.0096% of overpayments where the DWP was at fault. Moreover, it seems that claimants have a right to request a waiver. But as head of policy at the charity Advice NI Kevin Higgins noted, there seems to be a lack of awareness around this.

    The DWP says…?

    The Canary asked the DWP for comment. A spokesperson told us:

    At the onset of the pandemic we rightly suspended certain verification processes as we could no longer see customers face-to-face. However, we made customers aware that we may return to seek this verification in the future.

    If claimants have been paid money that they are not entitled to, then it is right that we seek to correct this on behalf of the taxpayer, whilst also offering support to ensure that any repayments are affordable.

    So, what can we do?

    A potential class action?

    The campaign groups Black Triangle and Disabled People Against Cuts (DPAC) are asking for evidence of the situation. They said they’re:

    calling for evidence regarding retrospective Overpayments. Have you received a letter telling you you have been overpaid either from DWP or HMRC since you claimed or moved to Universal Credit?

    If so can you please contact us… with evidence of overpayment and your contact details for a potential class action to take the DWP or HMRC challenge to court.

    It seems that the DWP has been in chaos since the pandemic hit. But what’s really going on here?

    Chaos or cruelty?

    Is the DWP now desperately trying to catch up with the millions of additional claims it fast-tracked, and therefore the Repair Unit is carrying out its duties without realising it’s not following basic rules?

    Or is it intentionally playing fast and loose with legislation; doing so in an attempt to claw-back as much of its budget as possible? DWP spending on Universal Credit went up to over £38bn in 2020/21 compared to just over £18bn 2019/20. This is an increase of around 111%.

    Either way, the DWP appears to be penalising claimants without following the law. Not that this is new – as the department has repeatedly been in court in recent years. But as always – it’s people who can least afford it which end up suffering.

    Featured image via VideoBlogg Productions/The Canary and Wikimedia 

    By Steve Topple

    This post was originally published on The Canary.

  • Campaigners and families demand action on police use of tasers

    On 25 August, the Independent Office for Police Conduct (IOPC) published a review of the police’s use of taser in England and Wales. The report raises concerns about officers’ disproportionate and inappropriate use of the electronic weapon against Black people, people with mental ill health and learning disabilities, and children. Families of people killed by taser have spoken out, calling for a ban on the use of the electric weapon. And campaigners argue that the police watchdog’s recommendations seeking improvements should go further in order to prevent further harm.

    Excessive and disproportionate use of taser

    For its report, the IOPC reviewed 101 taser investigation cases. It found that between 2015 and 2020 police in England and Wales were more likely to taser Black people for prolonged periods than their white counterparts. The watchdog also found a pattern of inappropriate tasering against people experiencing mental health crises. It highlighted five cases of police allegedly firing the electrical weapon wrongfully. IOPC director general Michael Lockwood concluded by saying that “policing has to change and be more responsive to community concern or risk losing legitimacy in the eyes of the public”.

    Responding to the report’s findings, the IOPC highlighted concerns about the police’s use of the electronic weapon. It set out 17 recommendations to the College of Policing, the National Police Chiefs’ Council, the Association of Police and Crime Commissioners, and the Home Office. These include “improvements to national guidance and training; scrutiny and monitoring of taser use; and data and research”.

    The IOPC’s findings are in line with concerns raised by rights organisations including The Children’s Rights Alliance for England, Amnesty UK, and the Omega Research Foundation.

    In 2020, the coroner investigating the death of Marc Cole following repeated police tasering warned about the increasing use of the weapon. In spite of evidence of the harm they can cause, the Home Office announced in 2019 that it would spend £10m on arming more police officers with the electronic weapon.

    Bereaved families speak out

    The families of people who have died after being tasered by police spoke out following the IOPC’s report. Some are calling for a ban on the use of taser against people experiencing mental health crises. In 2017, Cornwall police tasered Marc Cole while he was experiencing a mental health crisis. His sister Lisa Cole told the Guardian:

    They should immediately ban the repeated and prolonged use of Taser against people clearly exhibiting the symptoms of mental ill health until and if they have robust medical data showing that it is safe.

    In 2017, police repeatedly tasered, beat, and sprayed Darren Cumberbatch while he was experiencing a mental health crisis. Although the police’s excessive use of force contributed to his premature death, none of the officers involved have faced disciplinary action. Cumberbatch’s sister said:

    We’ve already had numerous shoddy reports and unimplemented recommendations since the Macpherson review. Our families are ending up ruined from fighting for justice against a system built against us.

    Time for action and accountability

    Calling for accountability for the death of her brother – as well as the deaths of Cumberbatch, Adrian McDonald, and others who have died following police tasering – Lisa Cole said:

    Our families urge the IOPC to now look at the key finding patterns in all the cases listed in the deaths and injuries section of the report and to urgently review and robustly reinvestigate all these cases.

    In a statement responding to the IOPC’s review, INQUEST director Deborah Coles said:

    This review is welcome but the recommendations do not go far enough to create the systemic change needed. Tasers are highly dangerous weapons which have resulted in serious injuries, harm, and deaths. They are increasingly used as a first not last resort.

    She added:

    We don’t just need more scrutiny, community oversight, or training or guidance. We need the IOPC, police chiefs and oversight bodies to hold police officers to account when they abuse their powers and to confront the reality presented by this evidence. We need strong action: stop the further rollout of Tasers to more officers now.

    Police reject the findings

    While campaigners say the IOPC’s recommendations should go further, police chiefs have condemned the report. Responding to the watchdog’s findings, National Police Chiefs’ Council lead for Less Lethal Weapons and chief constable Lucy D’Orsi said:

    Unfortunately, this report by the IOPC is vague, lacks detail, does not have a substantive evidence base and regrettably ignores extensive pieces of work that are already well underway and, indeed, other areas where improvement could be made.

    She added:

    Only 101 Taser uses over a five year period were reviewed and these were all ones that had been investigated by the IOPC. It is concerning that this only represents 0.1 per cent of all Taser uses in the same period, which totals 94,045.

    National vice chair of the Police Federation Ché Donald called the IOPC’s findings “statistically insignificant”, adding:

    We are naturally disappointed our 130,000 members were not consulted and this study is based on 0.1 per cent of Taser uses over a five-year period.

    But action is needed

    Campaigners and families remain steadfast in their calls for institutional change and accountability. Many are urging the state to halt the rollout of more tasers, and instead invest in communities, health and mental health services, and welfare and education to reduce harm at the hands of police.

    Featured image via Ehimetalor Akhere Unuabona/Unsplash 

    By Sophia Purdy-Moore

    This post was originally published on The Canary.

  • Biden Forgiving Student Debt of Disabled People, Totaling $5.8 Billion

    President Joe Biden gestures as he gives remarks in the White House on August 16, 2021.

    The Biden administration announced Thursday that it is cancelling student debt for people who have been diagnosed with certain disabilities, affecting more than 323,000 borrowers. This latest slate of cancellations will wipe out more than $5.8 billion in debt, according to the administration.

    “We’ve heard loud and clear from borrowers with disabilities and advocates about the need for this change and we are excited to follow through on it,” said Education Miguel Cardona in a statement.

    The Department of Education sought to make the student loan forgiveness process simpler for severely disabled borrowers.

    The federal government has a program for disabled borrowers to have their loans forgiven, but the process is often cumbersome and has been widely criticized for its lack of accessibility. Currently, disabled people seeking debt forgiveness have to navigate documentation barriers and undergo three years of monitoring to ensure that their income does not exceed the poverty line.

    Large swaths of people have been dropped from the program over the years for simply failing to file proof of income, critics point out. This can lead to people having their loans reinstated if they forget to file paperwork. The monitoring program provides an extra burden for people who hope to qualify.

    “The irony is that you have to work really hard to prove that you’re unable to work,” Persis Yu, an attorney at the National Consumer Law Center, told NPR in 2019. Hundreds of thousands of people at the time who could qualify for the program weren’t receiving the benefit, according to NPR.

    The new guidance will allow people who have been diagnosed by a physician, the Social Security Administration or Department of Veterans Affairs to be totally and permanently disabled to have their loans forgiven automatically, without having to navigate a complicated system of paperwork.

    The Biden administration is extending an income waiver indefinitely after dropping the paperwork requirement retroactively for the course of the pandemic. It is planning to pursue a rule to eliminate the requirement altogether in October, according to the Education Department.

    “The Department of Education is evolving practices to make sure that we’re keeping the borrowers first and that we’re providing relief without having them jump through hoops,” Cardona said in a call with reporters, according to The Washington Post. “I’ve heard from borrowers over the last six months that the processes are too difficult so we’re simplifying it.”

    President Joe Biden has come under scrutiny from the left for failing to follow through with campaign promises to cancel student debt for all. He has only offered limited debt cancellation programs that target specific groups. Progressives offered limited praise for Thursday’s move, though noted that Biden can and should do more on the issue.

    “I’m very glad that [the Education Department] is taking this important step to provide long-overdue relief to borrowers with disabilities. This announcement will change thousands of lives for the better,” said Sen. Elizabeth Warren (D-Massachusetts) in a tweet on Thursday. Warren has been one of Congress’s largest advocates for cancelling student loans.

    “Grateful that the Biden Administration has formally recognized its authority to cancel student debt,” wrote Rep. Mondaire Jones (D-New York) on Twitter Thursday. “He must now do this for everyone.”

    Activist group The Debt Collective noted on Twitter that the administration’s move was a very limited step to resolving this economic burden on millions of former students and their families. “The Biden administration announced student debt cancellation for 300,000 people today — a major policy win that took essentially no effort. He can, and should, do the same for every borrower,” the organization wrote.

    “The student debt crisis was $1.8 trillion yesterday,” the Debt Collective continued in a separate tweet on Friday, “but thankfully Biden canceled nearly $6 billion, which means the student debt crisis is at $1.8 trillion.”

    This post was originally published on Latest – Truthout.