‘Heartless’ reforms to disability benefits ‘defy logic’
“Heartless” government reforms that will eventually scrap the “fitness for work” assessment “defy logic” and pose significant risks to sick and disabled people who cannot work, say activists who have fought for years to highlight the test’s fatal flaws.
The decision to scrap the work capability assessment (WCA), which has been blamed for countless deaths and years of harm caused to claimants since its introduction in 2008, was the centrepiece of a new disability benefits white paper published yesterday afternoon (Wednesday).
The decision will mean disabled people who were previously assessed as not needing to carry out any work-related activity will in the future have to rely on the judgement of jobcentre work coaches to “determine what, if any, work-related activities an individual can participate in”.
This raises the prospect of claimants with significant impairments or long-term health conditions facing strict conditions imposed by their work coach, including potential benefit sanctions if they are unable to meet them.
The white paper confirms that its new approach “will mean both voluntary and mandatory work-related requirements may be set for health and disability benefit claimants, where this is appropriate, with requirements added at a pace that is appropriate for the individual”.
The long-awaited white paper, Transforming Support, was published nearly four years after the government first announced it intended to reform support for disabled people who rely on the social security system.
If and when the WCA is eventually scrapped, eligibility for the extra element of support paid to those currently assessed as having limited capability for work-related activity – either under universal credit (UC) or through the support group of employment and support allowance – will instead be awarded to anyone who receives both UC and personal independence payment (PIP).
Department for Work and Pensions (DWP) figures reported by DNS this week (see separate story) show that 632,000 people are receiving out-of-work disability benefits that only those with the highest support needs are eligible for, but not receiving PIP or disability living allowance, which PIP is gradually replacing for working-age claimants.
The reforms mean the government plans to fulfil its long-promised plans to – in effect – merge the WCA with the PIP assessment, which has also been associated with years of harm, flawed and dishonest assessments and claimant deaths.
Ministers stressed that PIP and universal credit would not merge and that PIP would remain a benefit people receive “whether they are in or out of work” and would “not be means-tested”.
Scrapping the WCA would need to be included in new legislation, which the government says is not likely until after the next election.
Even then, it would likely only be rolled out to all new claimants by 2029 at the earliest, with the process of moving existing recipients onto the new system probably not starting until 2029, or even later.
In a phrase used repeatedly by ministers as far back as 2007, work and pensions secretary Mel Stride and disability minister Tom Pursglove said their reforms would focus “on what people can do rather than on what they cannot”.
But Ellen Clifford, disabled activist and author of the award-winning The War On Disabled People, was among many who raised serious safety concerns about their plans.
She told Disability News Service last night: “After over a decade of fighting against the WCA, disabled campaigners should be celebrating the news.
“But we’re not – we are terrified of what is next.
“Scrapping [it] is not being done to stop the grave harms inflicted through the WCA.
“If that was a concern, the WCA wouldn’t have got past the awful suicide of Stephen Carré in 2010.”
She said the measures were instead being introduced because of the failure of the WCA to reduce the number of disabled people who are not in work, and the government’s concerns about the high number of people who are not working or seeking work.
Clifford said the “deeply flawed strategy” would “inevitably result in enormous pressures in communities already pushed to their limits” after more than a decade of austerity, social security reform and personal tragedies.
She said the Conservatives wanted “a social security system so punitive there is no safety net enabling anyone long term out of work for any reason to have anything near a semblance of a bearable life.
“That way, people will keep pushing themselves to stay in the most body-, soul- and mind- destroying jobs.
“Meanwhile, disabled people will be facing new nightmares with all their income dependent upon a single assessment known for wrongful decisions and at the mercy of a conditionality and sanctions regime that is known to discriminate against disabled people.”
Activist and researcher Caroline Richardson, a member of the Spartacus Network of disabled campaigners, said the government’s move was an attempt to silence critics of the WCA.
She said: “However, disabled people are often in work, and sick people are not, so this effectively cuts the financial support to sick people who cannot access [PIP].
“So, working disabled people can access a sickness benefit, and sick people cannot.
“It defies logic to leave people who are sick without support and subject to the whims of work coaches under universal credit.”
Paula Peters, a member of the national steering group of Disabled People Against Cuts (DPAC), said the reforms would mean disabled people “previously protected by the support group will be facing the grim prospect of conditionality and the constant bombardment of tasks and demands set by work coaches.
“As a result, benefit sanctions will rocket under universal credit.
“This is a callous, heartless, punitive move by the Conservative government which has shown once again it doesn’t give a damn about disabled people.
“This will cause untold stress, distress and harm.”
DPAC co-founder Linda Burnip added: “Basically, I’d say having unqualified job coaches decide if you’re not fit for work is even worse than having an ex-physio or occupational therapist making that decision [through the existing WCA system].”
Ken Butler, welfare rights and policy officer for Disability Rights UK, said the proposals would “completely remove the protection of no work conditionality, with instead a system geared to driving disabled claimants into seeking and applying for jobs.
“This conditionality would be enforced by a benefit sanctions regime.”
He added: “Those disabled people who can work need support to do so, backed up by the provision of reasonable adjustments by employers.
“However, those disabled people who can’t work or can only work limited hours need protection from sanctions.”
Although the WCA would not be scrapped for several years – and even then, only if the Conservatives win the next general election – concerns about the welfare of sick and disabled claimants over the next few years were heightened by other measures announced in yesterday’s budget.
Budget documents pledge to strengthen the DWP sanctions regime and ensure “that Work Coaches have the tools and training to implement sanctions as effectively as possible”.
The documents also show the government plans to spend an extra £90 million in 2023-24 on “additional work coach time for incapacity benefits claimants”, with £145 million in 2024-25 and £240 million in 2025-26.
16 March 2023
DWP white paper offers mix of ‘human catastrophe’ and overdue reforms
Nearly four years after announcing plans to reform support for disabled people, work and pensions ministers have published proposals for sweeping changes to disability benefits and employment support.
Some of the proposals – including plans to scrap the work capability assessment and expose severely ill people to the “whims of work coaches” – were greeted with anger and frustration by activists, who warned that they pose significant risks of harm.
Other measures, which could make the benefits assessment system fairer, are likely to be welcomed – if they are ever implemented – although questions will be asked over why it has taken so many years for the Department for Work and Pensions (DWP) to agree to introduce them.
Ministers said this week that they wanted to “improve the overall experience of, and trust in, the benefits system for disabled people” through the white paper, Transforming Support.
But as chancellor Jeremy Hunt had also announced plans to toughen the sanctions regime, that pledge was dismissed by many disabled activists.
Dr Jay Watts said on Twitter that building this trust was impossible when “sanctions that deprive people of their capacity to eat, heat and have housing are on the table, let alone with the back cloth of abuse that the DWP has and does to claimants”.
Most of the media attention was focused on the plans to scrap the work capability assessment (WCA) and rely instead on the assessment for personal independence payment (PIP) to decide eligibility for out-of-work disability benefits, a move which disabled activists said would pose significant risks to sick and disabled people who were unable to work (see separate story).
But other proposals in the white paper affect areas such as Access to Work, the accessibility of jobcentres and the PIP assessment system itself.
The white paper says DWP is testing a new Access to Work package for disabled people “who need more support than the existing scheme can provide”.
It will offer “increased personal support, supervision in excess of what is usually required to perform work tasks” and ongoing support from a work coach.
The government also plans to expand the use of employment advisers as part of psychological therapy, through the NHS Talking Therapies service, another idea likely to prove controversial among disabled activists concerned about the government’s insistence that finding a job or returning to work is an important health “outcome” for those with mental distress.
The white paper promises to create “a more efficient service and a vastly improved claimant experience” for its PIP assessment system.
DWP is developing targeted help for those claimants of disability benefits “who need it most”, including those who do not have family or friends to support them, through a new Enhanced Support Service.
This has been tested in Kent, and will also now be piloted in Birmingham, Blackpool and King’s Lynn, and if it proves successful and “good value for money”, could be expanded into areas of high demand next year.
The white paper includes several other measures to improve benefit assessments that may be well received but are also likely to spark questions over why they have taken so long to be accepted by DWP.
It is testing the idea of sharing benefit assessment reports with disabled people before a decision is made on their claim, “offering them the opportunity to clarify evidence so that we can make the right decision as early as possible”.
The white paper says DWP wants to increase the number of decisions on benefits such as PIP that it gets right first time “by engaging people throughout their journey and ensuring we are obtaining more relevant evidence earlier”, including medical evidence.
It says: “This should lead to a reduction in mandatory reconsiderations and appeals and make it more straightforward to challenge the outcome of a claim.”
These suggested improvements are likely to anger and frustrate mental health system survivors, who fought for years through the courts to try to force DWP to address flaws in the assessment system that meant relevant medical evidence was often not collected before a decision was made on a claim.
These flaws were associated with countless deaths.
DWP is also moving to an IT system that will be able to record all assessments, including those carried out by telephone and on video, if requested by the claimant.
And it says that, later this year, it will begin testing how to match people’s primary health condition to an assessor who specialises in that condition, another demand long made by many disabled people.
DWP has also appointed architects to develop a new jobcentre design guide so that new and refurbished sites “will be accessible environments for customers, visitors and employees”.
The white paper was published soon after the chancellor’s budget speech.
The move to scrap the WCA had been announced by Jeremy Hunt, who claimed it meant “disabled benefit claimants will always be able to seek work without fear of losing financial support”.
He also announced a new voluntary disability employment programme, Universal Support, with the government spending up to £4,000 per person to support 50,000 disabled people a year to find appropriate jobs.
But details in budget documents released yesterday are likely to alarm disabled activists, with the warning that the Office for Budget Responsibility has forecast that the welfare cap will be breached by £4.1 billion in 2024-25.
The Treasury says in the documents that the government “remains committed to ensuring welfare spending is sustainable and is focused on meeting the welfare cap” by 2024-25, which suggests there will be further DWP efforts to cut social security spending over the next two years.
The budget documents also pledge to strengthen the DWP sanctions regime and ensure “that Work Coaches have the tools and training to implement sanctions as effectively as possible”.
The documents show the government plans to spend an extra £90 million in 2023-24 on “additional work coach time for incapacity benefits claimants”, with £145 million in 2024-25 and £240 million in 2025-26.
The measures mirror announcements made by previous governments seeking to clamp down on social security spending and cut the numbers on out-of-work benefits.
About 15 years ago, New Labour work and pensions secretary James Purnell warned that jobcentre advisers would be given more powers to impose sanctions on claimants and said those advisers wanted “greater freedom to use the sanctions that currently exist”.
That was taken up by the 2010 Tory-led coalition government, with employment minister Esther McVey bragging in November 2013 of how she wanted to end the “something for nothing” culture and that jobseeker’s allowance claimants had had their payments suspended 580,000 times in the first nine months after “new tougher rules” had been introduced in October 2012.
Just months earlier, in July 2013, David Clapson had died from diabetic ketoacidosis, an acute lack of insulin, three weeks after having his benefits sanctioned.
His electricity key had run out of credit because he had no money, so the fridge where he kept his insulin was not working.
An autopsy found his stomach was empty, and the only food left in his flat was six tea bags, a tin of soup and an out-of-date can of sardines. He had just £3.44 left in his bank account.
Mark Harrison, a member of the steering group of Reclaiming Our Futures Alliance (ROFA), said: “Benefit sanctions are at record levels and are used as a blunt instrument to bully and intimidate claimants to take slave labour jobs.
“The scrapping of the WCA will drag sick and disabled people into this brutal system where people can lose all their benefits/income at the whim of an unqualified job coach or an artificial intelligence computer programme.
“The DWP treats claimants far harsher than the criminal justice system, where if you are convicted and fined your income and ability to pay is taken into account.
“How can this be a compassionate and fair welfare system when it fails to provide a safety net for sick and disabled people?
“The UN was right, this is a ‘human catastrophe’ from a government which continues to commit grave and systematic violations of our human rights.”
Ken Butler, welfare rights and policy officer for Disability Rights UK, said: “Those disabled people who can work need support to do so, backed up by the provision of reasonable adjustments by employers.
“However, those disabled people who can’t work or can only work limited hours need protection from sanctions.
“The new employment programmes targeted at disabled people are welcomed but these need to be co-produced by disabled people with disabled people’s organisations involved in their implementation.
“What is not needed is the removal of no work conditionality with its replacement by a sanctions regime.”
16 March 2023
DWP figures show 600,000 could be missing out on disability benefits
More than 600,000 disabled people could be missing out on thousands of pounds a year of disability benefits they are entitled to, according to new figures released by the minister for disabled people.
They show that 632,000 people are receiving out-of-work disability benefits that only those with the highest support needs are eligible for, but not receiving the extra costs disability benefits disability living allowance (DLA) or personal independence payment (PIP).
The figures could mean that tens or even hundreds of thousands of disabled people could be eligible for up to £156 a week more in benefits than they currently receive.
The figures, released by Tom Pursglove, show that, as of August 2022, 259,000 disabled people who were in the employment and support allowance (ESA) support group were not receiving any PIP or DLA.
Another 373,000 disabled people were receiving the limited capability for work-related activity element (LCWRA) of universal credit without receiving PIP or DLA.
Both the ESA support group and the LCWRA group are for those with limited capability for work-related activity because of their impairment or health condition, so it is highly likely that many of them would also be entitled to some level of PIP or DLA.
Some of these disabled people could be receiving the new adult disability payment from the Scottish government, but that is likely to apply to only a few thousand claimants, as only 3,470 disabled people were receiving that benefit in October 2022.
The figures were obtained by Labour’s shadow minister for disabled people, Vicky Foxcroft, who has called on the Department for Work and Pensions (DWP) to take action, including writing to every one of the 632,000 claimants to ask if they have considered applying for PIP, a move which could help drag hundreds of thousands of disabled people out of poverty.
She said: “I am concerned to see that 600,000 people who are in the ESA support group or claiming universal credit with LCWRA are not receiving PIP or DLA.
“Ministers need to urgently investigate the discrepancy to establish the reasons behind it.
“The government must do all it can to ensure people are aware that they may be entitled to further non-means tested support.”
Anela Anwar, chief executive of the poverty charity Z2K, told Disability News Service: “This data suggests that hundreds of thousands of low-income disabled people could be missing out on money they’re due.
“Disabled people are more likely to be in poverty than the general population, and the cost-of-living crisis is hitting hard.
“DWP must take greater responsibility for making sure people can access their full legal entitlements – not just put the onus on disabled people themselves.”
DWP refused to say what action it had taken to ensure disabled people in the two groups were claiming all the benefits they were entitled to.
But a DWP spokesperson said: “Take-up may be affected by broad factors such as the attractiveness of the benefit, awareness of the benefit/application procedure, awareness of entitlement, and the perceived stigma of receiving a benefit.
“PIP/DLA can help with some of the extra costs if your health condition or disability is expected to last 12 months, while ESA/UC can provide financial support to people whose disability or health condition affects how much they can work.
“Receiving one benefit does not mean an individual will be eligible for the other.”
16 March 2023
DLA ‘disallowances’ plummeted after death of Philippa Day, DWP figures show
The number of people who had their disability benefits stopped for failing to return a reassessment form plummeted following the death of a young disabled mum in 2019, new figures have revealed.
The figures show that, from 2016 to 2019, there were roughly 20,000 “disallowances” a year of disability living allowance (DLA) from disabled people who had failed to return the PIP2 re-assessment form to apply for the new personal independence payment (PIP) benefit.
The number of monthly disallowances reached nearly 3,000 in September 2019, according to the figures obtained by Disability News Service following a freedom of information request.
The following month, 27-year-old Philippa Day, from Nottingham, died in hospital after falling into a coma on 7 or 8 August 2019.
A coroner later concluded that flaws in the PIP system were “the predominant factor and the only acute factor” that led to her taking her own life.
Her life had begun to spiral out of control in January 2019 when DWP stopped her DLA after it did not receive the PIP2 form she had posted to the department.
From November 2019, the number of DLA disallowances for failing to return the PIP2 form began to fall.
The following year, there were less than 9,000 DLA disallowances – a fall of more than 10,000 in just one year – in 2021 there were about 5,000, and in the year to October 2022 there were just 4,000, with an average of about 400 a month, compared with 2,898 in September 2019.
DWP refused to say this week if it took action in late 2019 or early 2020 as a direct result of Philippa Day’s death.
Marsha De Cordova, the disabled Labour MP who has been asking parliamentary questions about disallowances, said: “It is completely wrong and unacceptable that nearly 20,000 people a year between 2016 and 2019 had their DLA and PIP disallowed due to them not returning their reassessment forms.
“This has led to hardship for many ill and disabled people and in some cases death, such as that of Philippa Day.
“By failing to implement safeguards until 2019, it shows the level of disdain the government have for disabled people.
“All the evidence shows how the Conservatives in government have created a hostile environment for disabled people.
“The government must apologise to everyone that has been impacted by this cruel policy, commit to greater transparency and ensuring that no-one is left worse off for not returning their reassessment forms.”
Philippa Day’s sister Imogen said the number of disallowances in the years before her sister’s death was “horrifying” and “shocking”.
She said she was “terrified” by the thought that other disabled people could have lost their lives because they had unfairly lost their DLA.
She said the figures appeared to show a clear decline in disallowances in the months after her sister’s death.
She said: “I am pleased that it’s downward trending but it’s still not enough.”
DWP refused to say if it took action on DLA disallowances after it learned of Philippa Day’s death; refused to apologise for those who lost their lives after having their DLA removed for not returning their PIP2 forms; and refused to say how many other claimants it believed had lost their lives in similar circumstances.
But a DWP spokesperson said in a statement: “To ensure we continue to provide the necessary protection and support to our most vulnerable customers we keep our processes under constant review and ensure all staff are provided with appropriate guidance and training.”
16 March 2023
Activists accuse NHS England of ‘betrayal’ over StopSIM co-production
Disabled activists have accused NHS England of “betrayal” after it went back on its promise to publish a policy – developed with service-users – that would have put an end to a mental health scheme branded discriminatory, coercive and punitive.
Members of the StopSIM coalition said service-users would feel “anger, disappointment and fear” at NHS England’s decision to publish a pared-down letter rather than the full policy, and its failure to include an apology or a commitment to change.
The coalition had been working on the “rigorous and detailed” policy with NHS England for 15 months after its members exposed the dangers posed by the multi-agency Serenity Integrated Mentoring (SIM) scheme.
They say the failure to publish the document “means service-users will be left without access to a policy that could help protect them from SIM and SIM-like approaches”.
And they say it shows NHS England (NHSE) has “a greater interest in protecting their reputation than protecting service users’ lives”.
One member of the coalition said they had been left “physically sick” by NHSE’s actions after 15 months of tireless, unpaid work that had put their and their colleagues’ health – and lives – at risk.
They said on Twitter that they had lost the “hope of ever being heard no matter how hard we try”, and told NHSE that they did not “have any more words for the pain and hurt I’m feeling”.
SIM-type schemes focus on users of mental health services – often those at high risk of suicide and self-harm – who have not committed a crime but are seen as “high intensity users” of emergency services.
The coalition’s campaigning revealed the flaws in the “sinister” and “disturbing” scheme and persuaded NHSE to order local reviews of how it had been implemented by trusts across the country, seven years after it was first piloted on the Isle of Wight.
For the last 15 months, the coalition has been working with NHS England on a new policy document and had been expecting it to be published in full by 10 March.
But on Friday (10 March), Professor Tim Kendall, NHSE’s national clinical director for mental health, published only a short letter that had not been approved by the coalition, stripped the policy “down to the bare minimum”, and used the coalition’s words without its members’ consent.
Among the elements missing from the policy, said the coalition, was an acknowledgement from NHS England that its endorsement of SIM had caused harm to patients, an apology, and “commitments to make changes to prevent this from happening again”.
The coalition said it had been told that NHSE’s communications department had refused to sign off the new policy because it was “politically inconvenient”, despite it having been approved by NHSE’s legal team and chief executive.
The coalition also criticised the “obstinance and unprofessionalism” shown by the Academic Health Science Network – set up by NHSE to “spread innovation” and link the NHS with academic organisations, local authorities, the third sector and industry – which it said had supported and promoted the SIM scheme and disrupted the coalition’s role in developing the new policy.
The StopSIM coalition said in a statement: “Our experience with NHS England shows that their commitment to ‘co-production’ and embedding experiential knowledge is nothing more than rhetoric.
“Indeed, this will have a ripple effect on wider lived experience involvement in deterring other service user/survivor groups from seeking to work with NHS England at all levels.”
SIM was first trialled in 2013 on the Isle of Wight, but was eventually rolled out to nearly half the mental health trusts in England, and had been backed by NHS England and recognised with national awards.
But an increasing number of disabled activists began to warn that it was based on coercion and denial of potentially life-saving support and was causing some service-users to live in fear of arrest or prosecution when they were in mental health crisis.
Documents obtained by Disability News Service revealed last September that reviews carried out by NHS trusts into the use of SIM-type schemes raised multiple concerns about its use, and showed that many of the trusts had continued with practices that campaigners had described as “harmful” and “inappropriate”.
In Kendall’s 10 March letter, he says that SIM or similar models “must no longer be used in NHS mental health services”.
He says there must be an end to the involvement of police officers in delivering “therapeutic interventions in planned, non-emergency, community mental health care”.
And he says the use of coercion, sanctions, withholding care and other “punitive approaches” must also end, including making patients sign contracts about how they will behave or arresting or prosecuting them for regularly appearing at mental health services.
Kendall also demands the end of “discriminatory practices and attitudes” towards patients who express self-harm or suicidality or are seen as “high intensity users”, including labelling them “manipulative” and “attention seeking” or telling them they “have capacity to take their own life”.
NHSE refused this week to say why it had reneged on its promise to publish the policy; and whether it agreed with the concerns about AHSN’s actions.
It also refused to say if its actions would deter other service-user and survivor groups from working with NHSE, and if they showed its commitment to co-production was “nothing more than rhetoric”.
And it refused to say if the absence of a robust statement outlining the existence of SIM teams across England and the decisions which enabled SIM to be implemented showed “an egregious lack of transparency and accountability”.
NHSE has denied that its communications department refused to sign off the policy.
An NHSE spokesperson said in a statement: “NHS England has taken this matter very seriously and is grateful to the StopSIM coalition for initially highlighting concerns about the SIM model and for giving them a platform via their campaign.
“Following the local reviews, engagement, and review of the evidence it is NHS England’s position that SIM or similar models must no longer be used in NHS mental health services.
“While mental health services will continue to work in partnership with the police where appropriate, any approach that seeks to punish or withhold care from patients who are experiencing distress is deeply unethical.”
AHSN had not responded to questions about its actions by noon today (Thursday).
16 March 2023
NHS England’s StopSIM ‘betrayal’ is ‘ticking time bomb’ on co-production
NHS England has been warned that its actions could “plunge co-production into crisis”, after it went back on a promise to publish a mental health policy that disabled campaigners had been working on for 15 months.
Grassroots groups and disabled activists spoke out this week after the decision of NHS England to prevent the release of a document drawn up with detailed input from members of the StopSIM coalition, who had worked “tirelessly” – without payment – on the policy.
The coalition had been working on the “rigorous and detailed” policy with NHS England (NHSE) after exposing the dangers posed by the multi-agency Serenity Integrated Mentoring (SIM) scheme.
But last Friday, Professor Tim Kendall, NHSE’s national clinical director for mental health, published only a short letter that had not been approved by the coalition and which stripped the policy “down to the bare minimum” and used the coalition’s words without its members’ consent (see separate story).
Now StopSIM and other campaigners have expressed their frustration at the “betrayal” and have warned that it could have serious consequences for co-production across the mental health sector, particularly within the NHS.
The StopSIM coalition said: “Our experience with NHS England shows that their commitment to ‘co-production’ and embedding experiential knowledge is nothing more than rhetoric.
“Indeed, this will have a ripple effect on wider lived experience involvement in deterring other service user/survivor groups from seeking to work with NHS England at all levels.”
The grassroots, user-led mental health group Recovery in the Bin (RITB) said NHSE’s move was “the final nail in the coffin” for any confidence that NHS positivity towards co-production “was anything more than virtue-signalling rhetoric”.
An RITB spokesperson said there were “serious ethical and safeguarding concerns around the continued promotion of co-production in the NHS until there are better processes in place to make sure patients aren’t pouring their heart and soul into tokenistic activities that will block any real change and facilitate continuation of the status quo.
“Insincere ‘co-production’ and involvement is profoundly damaging to patients’ mental health and heart-breaking on a personal level, creating disillusionment and loss of hope, not just in the NHS but in society.”
They said that seeing a campaign with the profile of StopSIM “get screwed over so publicly” was “crushing”.
They added: “It may not have such a big effect on people new to involvement but for those of us who have been doing it for a while, seeing what’s happened even when there’s such support for the cause and so much public scrutiny is deeply discouraging.
“On the upside, it makes me more confident that activism outside the NHS is the right way forward.”
Dr Jay Watts, a disabled activist and consultant clinical psychologist, said NHS England’s “sudden reversal of its commitment to publish the full StopSIM statement” was “a ticking time bomb that threatens to plunge co-production both nationally and locally into crisis”.
She said: “Building trust is crucial in the early stages of co-production because patients and activist groups often have valid reasons to be cautious about professionals’ commitment to shared work.
“Far too often, decision-making has been taken out of their hands, whether it’s in individual care or systemic decision-making that claims to value their opinions.”
She said professionals had “appeared to be making genuine progress in making co-production something more than just lip service, thanks to the hard work, at considerable cost, of countless survivors who had shown the game-changing benefits of truly learning from patient expertise and innovation.
“The principles of co-production had begun to be enshrined in national policy, at trust board levels, and were even being spearheaded by NHSE themselves.
“The decision not to publish the co-authored statement puts this progress in real jeopardy.”
She questioned how patient groups could trust they were not being “used” for political purposes “if genuine joint work can be pulled by the powers that be, in this case after 15 months of shared working.
“Acts of genuine collaboration linger long in the hearts and minds of activist groups, betrayal longer still.
“It’s crucial that NHS England realise the potential domino effects of their decision, and make a U-turn, publishing the full co-authored #StopSIM statement.”
Akiko Hart, chief executive of The National Survivor User Network (NSUN), also expressed concern at NHSE’s actions.
She said: “NSUN is deeply disappointed by NHS England’s failure to publish this policy after 15 months of intensive labour from service-users and allies.
“This betrayal contributes to an already heavy history of mismanaged initiatives which co-opt or erase survivor and service-user work.
“We call on NHS England to urgently rethink this decision or risk embedding further distrust in the system and co-production work.”
NHS England’s decision also appears to have left some NHS executives bemused.
Bobby Pratap, former deputy head of mental health for NHS England and still working within the NHS, said on Twitter that he did not know why the policy had not been published but he believed it was “the most genuinely coproduced work” he had seen in 16 years of national policy, and that it had “rare” near-universal support from stakeholders.
NHSE refused to say why it had reneged on its promise to publish the policy; whether its actions would deter other service-user and survivor groups from working with NHSE; and whether its actions showed its commitment to co-production was “nothing more than rhetoric”.
But an NHSE spokesperson said in a statement: “NHS England has taken this matter very seriously and is grateful to the StopSIM coalition for initially highlighting concerns about the SIM model and for giving them a platform via their campaign.
“Following the local reviews, engagement, and review of the evidence it is NHS England’s position that SIM or similar models must no longer be used in NHS mental health services.
“While mental health services will continue to work in partnership with the police where appropriate, any approach that seeks to punish or withhold care from patients who are experiencing distress is deeply unethical.”
SIM-type schemes focus on users of mental health services – often those at high risk of suicide and self-harm – who have not committed a crime but are seen as “high intensity users” of emergency services.
SIM was eventually rolled out to nearly half the mental health trusts in England, and was backed by NHS England and recognised with national awards.
But an increasing number of disabled activists began to warn that it was based on coercion and denial of potentially life-saving support and was causing some service-users to live in fear of arrest or prosecution when they were in mental health crisis.
The coalition’s campaigning revealed the flaws in the “sinister” and “disturbing” scheme and persuaded NHS England to order local reviews of how it had been implemented by trusts across the country.
Documents obtained by Disability News Service revealed last September that those reviews raised multiple concerns about its use, and showed that many of the trusts had continued with practices that campaigners had described as “harmful” and “inappropriate”.
16 March 2023
MPs hear of deep concern over energy companies’ forced installations
Energy companies will not be allowed to restart the forcible installation of prepayment meters in the homes of “vulnerable” and other customers until they can prove they are complying with a new code of practice, the regulator has told MPs.
Jonathan Brearley, chief executive of the energy regulator Ofgem, told MPs that the watchdog was “deeply concerned” by widespread reports about the behaviour of energy companies such as British Gas.
He said: “We are very clear vulnerable customers need to be treated fairly and that means vulnerable customers need to be treated with respect.”
He was speaking to a joint hearing of the business, energy and industrial strategy (BEIS) committee and the justice committee.
It followed media reports – initially in the i newspaper and then The Times – about the forced installation of pre payment meters (PPMs) by energy companies.
A four-month investigation by i found that courts were processing hundreds of warrants in just minutes, allowing debt agencies working for energy suppliers to forcibly fit the meters, despite concerns over insufficient checks on the “vulnerability” of disabled and other customers.
Lord Justice Edis, the senior presiding judge of England and Wales, told magistrates’ courts last month to stop listing applications from energy companies for the warrants.
And Ofgem launched a review investigating the rapid growth in prepayment meter installations following the “extremely serious allegations” in The Times about forced installations by British Gas.
The industry had been told it could not restart forced installations until the end of this month, but Ofgem now says they will not restart until energy companies can prove they are treating disabled and other customers fairly.
Brearley told the MPs: “We are deeply concerned about, not only the reports in The Times, but the reports that have been appearing for some time around the behaviour of energy companies with regards to the forced installation of pre-payment meters.”
He said Ofgem had been clear through the last year of huge energy price rises that the energy sector’s focus “needs to be on its most vulnerable customers”.
He said Ofgem had launched a review in January to look at the systems, processes and outcomes for customers who have had PPMs installed.
A new code of practice is now expected by the end of this month.
Brearley said forced installation of PPMs would only restart “when and if they can establish they are acting in accordance with that new code of practice”.
Labour’s Darren Jones, chair of the BEIS committee, pointed out that Ofgem had announced action on the issue as far back as 2018 and promised then to “take tough action if the suppliers fail to treat their vulnerable customers in the right way”.
Brearley claimed Ofgem was now working more proactively.
Chris O’Shea, chief executive of Centrica, which owns British Gas, had earlier been asked by the committee if its agents breached rules by breaking into the homes of disabled and other “vulnerable” people to forcibly install PPMs.
Among the cases of forcible installation reported by The Times and raised by the committee this week were those of a woman with mental distress, and a partially-sighted woman with arthritis.
But O’Shea said he did “not have the details” of either case.
He said: “It’s sometimes not possible to identify a vulnerability because customers will simply refuse to engage. If we identify a vulnerability, we don’t install PPMs.”
But Jones said: “All of the cases that have been reported, and these are only some of them, are to me a very clear breach of your licence conditions.”
O’Shea said he was waiting for British Gas’s own investigation before he could conclude if the incidents reported by The Times were “isolated or systemic”.
Asked if British Gas would compensate the victims of its actions, he said: “If we identify that we acted incorrectly we will make that right.
“I can only answer that question when we have the results of that investigation.”
But he said that, since The Times allegations were published, 300 customers have written to British Gas to say they believe they were wrongly moved onto PPMs.
British Gas forcibly installed more than 20,000 PPMs last year after obtaining warrants from magistrates’ courts, the committee heard.
Labour’s Karl Turner, a member of the justice committee, said that between July 2021 and December 2022, magistrates granted a “staggering” 536,139 PPM warrants to agents acting for energy companies and refused just 75.
Many of the warrants that are granted do not end up with PPMs being installed, the MPs were told.
Robin Cantrill-Fenwick, a former magistrate, told the committee that the process of obtaining the warrants had altered in favour of the energy companies in 2019, making it much harder for magistrates to reject a PPM warrant.
Some magistrates’ courts were dealing with as many as 1,000 applications to forcibly install PPMs in a single day, he said.
The applications were dealt with by magistrates over the phone, and the occupants of the homes had no idea when or at what court the applications were being dealt with.
Cantrill-Fenwick eventually resigned as a magistrate in protest at the changes.
He said: “My strong suspicion is that there were conversations around how we balance the interests of an efficient process in the courts with an efficient process for the energy companies, and somewhere in that the interests of the person, the occupier, got lost.”
He said he believed it had been presumed that the energy companies could balance their interests and those of the occupier “and they would be the people who would exercise restraint on whether or not to put a warrant application in”.
But he said that that expectation “has been shown to be quite naïve”.
He told the committee that nobody in the justice system “has accepted wrongdoing” for what had happened with the PPM warrants.
He said this “poses a very real danger that when the media attention moves on, the parliamentary attention must inevitably move on, [and] this snaps back to the way it was before, which would be a tremendous injustice”.
16 March 2023
DWP backs down in legal case over release of secret death reports
The Department for Work and Pensions (DWP) has backed down in its fight to hide recommendations made in 22 secret reports into the deaths of benefit claimants.
Ministers had been told by the information commissioner to release the recommendations to Disability News Service (DNS), but they appealed against the ruling.
The case was due to be heard later this year by the information rights tribunal, but DWP told DNS last week that it has now withdrawn its appeal.
The recommendations were made by DWP’s own civil servants in secret reports completed between April 2019 and September 2020 and should show what advice was given to ministers on how to improve safety and reduce the number of suicides and other deaths of disabled people claiming benefits.
The DNS bid to secure the information was made in September 2020, but DWP has been resisting its release for more than two years. It is now likely to be released early next month.
DWP had argued that releasing the reports would interfere with the formation or development of government policy.
But DNS has argued that releasing the recommendations made by the internal process reviews (IPRs) – previously known as peer reviews – is vital in ensuring DWP can be held to account for how it has responded to deaths linked to the social security system.
The information commissioner decided last October that DWP had “failed to consider the strong public interest in the timely understanding, and scrutiny of, the recommendations made in the IPRs” and that releasing them would “allow scrutiny of whether the actions taken were sufficient or timely enough to prevent the harm identified occurring again”.
The commissioner said he had decided there was “a strong public interest in understanding DWP’s approach to preventing future errors and safeguarding issues”.
The decision should have meant that ministers released recommendations from 22 IPRs that were completed between March 2019 and September 2020 and have until now been kept secret.
John Pring, editor of DNS, submitted a lengthy witness statement to the tribunal.
In his statement, he referred to DNS news stories which he said showed “that DWP’s actions continue to cause the deaths of claimants”.
He added: “By continuing to secure access to the recommendations made in IPRs we can at least secure some information that will help to hold the department to account and force it to offer a public explanation if it fails to act on recommendations made in its own reviews that could prevent further deaths.”
He said he believed DWP was only seeking to avoid the release of IPR recommendations to avoid embarrassment and to make it easier to prevent being held to account for its failures.
He said: “Preventing the release of further IPRs will make it easier for DWP to hide its fatal errors and will put the lives of countless disabled people claiming benefits at risk.”
It is the latest episode of a near decade-long battle by DNS to force DWP to release information about deaths linked to flaws in the benefits system.
The tribunal previously ruled in 2016 that redacted versions of reviews carried out between 2012 and 2014 should be released.
But in recent years, particularly under the last work and pensions secretary, Therese Coffey, the department has tried to rely on exemptions contained within the Freedom of Information Act to prevent the release of further reviews.
The reviews that have been released have revealed key safety failings by the department.
The first batch of reviews, when they were eventually released in 2016 after a 21-month legal battle, showed that at least 13 reports had explicitly raised concerns about the way that “vulnerable” benefit claimants were being treated by DWP.
Another review obtained by DNS, in 2018, helped show how DWP had been forced to soften the “threatening” tone of the agreement that universal credit claimants must sign to receive their benefits.
And in December 2020, another freedom of information request allowed DNS to show that DWP staff had had to be repeatedly reminded what to do when claimants said they may take their own lives, following reviews into as many as six suicides.
Those reviews suggested that a series of suicides between 2014 and 2019 were linked to the failure of DWP staff to follow basic rules that had been introduced years earlier.
DWP refused this week to say why it had withdrawn its appeal, and whether it would apologise for delaying the freedom of information process and wasting money on the appeal.
16 March 2023
Other disability-related stories covered by mainstream media this week
Thousands of people with learning difficulties are stuck in long-stay hospitals because of a lack of psychological support and overly complicated treatment systems, according to research. The report from the University of Birmingham has been released in conjunction with an exhibition from the subversive street artist Foka Wolf titled Why Are We Stuck In Hospital? The Birmingham-based artist, known for his billboard pranks, has created a gallery installation to illustrate the invisibility of people in long-stay hospitals such as assessment and treatment units or secure units: https://www.theguardian.com/society/2023/mar/14/thousands-learning-disabilities-trapped-long-stay-hospitals
Baroness Masham, a retired Paralympian and the longest-serving female member of the House of Lords ever, has died aged 87. Baroness Masham won medals in swimming and table-tennis at the 1960, 1964 and 1968 games and was created a life peer in 1970. She spent much of her career campaigning for disability rights. The Spinal Injuries Association, which she founded in 1974, said it was “devastated to have lost our greatest champion”: https://www.bbc.co.uk/news/uk-politics-64947909
The Department for Work and Pensions (DWP) has been ordered to release “sensitive” research into whether fining benefit claimants is effective in getting them to take a job or work more hours. The internal DWP study was commissioned in 2019 after a cross party committee of MPs concluded that while there was no evidence benefit sanctions incentivised people to get work, they did have a negative effect on claimants’ health and finances: https://www.theguardian.com/politics/2023/mar/14/dwp-ordered-to-release-sensitive-research-into-effects-of-benefit-sanctions
16 March 2023
News provided by John Pring at www.disabilitynewsservice.com