Claimant deaths still linked to systemic flaws in benefits system, DWP document shows
Scores of deaths of claimants in the last three years have been linked to persistent, systemic flaws in the way benefits are managed by the Department for Work and Pensions (DWP), an official document has shown.
The DWP document, released to Disability News Service (DNS) following a freedom of information request, shows numerous deaths have been linked by the department’s own civil servants to flaws in the universal credit, complaints, personal independence payment (PIP) and work capability assessment systems.
The document lists some of the recommendations for improvements made by secret DWP internal process reviews (IPRs) that were completed between 1 September 2020 and 14 November 2022 following the deaths of 46 claimants of PIP, universal credit and other benefits.
DWP is still refusing to release scores of other recommendations made by IPRs completed between April 2019 and November 2022, because it claims that releasing them would interfere with the formation or development of government policy.
But the recommendations that have been released suggest close links between numerous deaths and key parts of the benefits system, despite more than a decade of such tragedies.
They include repeated recommendations about DWP’s complaints system, including at least two that suggest deaths have been linked to a failure to correct “factual inaccuracies” in responses to concerns raised by claimants; another suggesting a link to a failure to provide a “comprehensive and factually accurate” response to a complaint; and a third relating to the handling of a PIP complaint.
Another IPR, examined by DWP’s IPR group in January 2021, suggests there were still flaws in the system for visiting claimants in their own homes, despite such failings being closely linked to the deaths of claimants such as Errol Graham, who starved to death in 2018 after DWP wrongly stopped his out-of-work benefits.
A reference in one recommendation to “the correct gathering of information prior to claim closure” suggests serious continuing problems with the work capability assessment system, which has been linked to countless deaths over the last 13 years, while another recommendation suggests a failure to accurately record changes to a claimant’s account on the employment and support allowance system.
There are about 20 recommendations relating to universal credit (UC) – all of them linked to deaths of UC claimants – including a reference to messages on a claimant’s online journal not being replied to “in a timeous manner”; another to a failure to respond correctly to a claimant’s journal message; and a reference to “the importance of checking system notes prior to sending journal messages”.
These are all issues that have been raised with Disability News Service by disabled people receiving universal credit, which again suggests systemic flaws in the system.
There is also a concern raised about the inappropriate use of “No Reply Needed” markings made by DWP staff in response to online journal messages from UC claimants.
The document shows numerous recommendations made in IPRs relating to the PIP system.
One IPR recommendation calls for the need to improve “correspondence accuracy”, and for changes reported by claimants to be “accurately and adequately recorded on the system notes”.
This recommendation was examined by DWP’s IPR group in July 2021, several months after a coroner had highlighted how 28 separate “problems” with the PIP system helped cause the death of 27-year-old Philippa Day, and so might have been made in DWP’s final IPR report into her death.
One of the most concerning recommendations – made in an IPR examined in January 2022 – is a call for DWP’s PIP department to assure the team overseeing IPRs that “they will explore opportunities for improving compassionate call handling techniques for telephony agents”.
The inquest into Philippa Day’s death heard a DWP “telephony agent” had listened to Philippa sobbing as she described how she was “literally starving and cold”, “genuinely can’t survive like this for much longer”, was “in so much debt”, “literally cannot leave the house”, and needed “a reason to live”.
But the agent offered no reassurance or acknowledgement of Philippa’s distress, and made no attempt – during the call in the summer of 2019 – to “escalate” any concerns to senior colleagues.
This reference to a lack of compassion again suggests systemic problems.
Another PIP recommendation – examined by the IPR group in March 2022 – raises a concern about the “importance of recording accurate notes of information received from customers or their representatives during telephone calls”, another issue raised during Philippa Day’s inquest, which again suggests systemic problems.
A DWP spokesperson declined this week to say why the department believed the many recommendations did not demonstrate systemic flaws, and declined to explain how DWP could be seen as fit for purpose when claimants were still dying due to such serious flaws in the social security system.
But the spokesperson said in a statement: “We support millions of people every year and our priority is they get the benefits they are entitled to as soon as possible and they receive a supportive and compassionate service.
“In the minority of instances where this does not happen, we have established procedures to investigate and learn lessons through, for instance, the serious case panel and internal process reviews.”
*The Deaths by Welfare project yesterday (Wednesday) released a new podcast which features Imogen Day, Philippa’s sister, and John Pring, editor of DNS, discussing the IPR system and the fight for an independent inquiry into benefit-related deaths
26 January 2023
Coffey scrapped plan for independent review of sanctions, DWP admits
The government abandoned proposals for an independent review of its much-criticised sanctions policy, the latest example of how a minister watered down plans to prevent suicides and learn lessons from the deaths of benefit claimants.
The decision to further limit the effectiveness of the so-called DWP Excellence Plan was taken by work and pensions secretary Therese Coffey, shortly after she took over from Amber Rudd in September 2019.
A document secured by a welfare rights expert through a freedom of information request shows Rudd wanted her Department for Work and Pensions (DWP) to commission an “independent review of sanctions policy”, which could have included a review of both policy and delivery of sanctions by her department.
The review was one of the “activities” listed in a draft document – dated 19 September 2019 – that showed “phase one activities” for the DWP Excellence Plan.
But in response to a separate request from Disability News Service (DNS), DWP has confirmed that the plans for an independent review of sanctions policy were subsequently abandoned.
In its response, DWP says that “ideas on sanctions policy were discussed which resulted in a submission proposing an independent review of sanctions” in 2019.
It adds: “The Secretary of State at that time [Amber Rudd] was interested in taking this forward however the work was initially paused when [she] resigned shortly after, and then did not take place due to the emergence of the COVID-19 pandemic and differing priorities at that time.
“As the review did not progress, there are no documents that can be shared.”
Public Law Project (PLP), which last year published a report that found the system for challenging benefit sanctions posed “significant harm” to claimants, said DWP’s decision to scrap the review was “deeply disappointing”.
Caroline Selman, a PLP research fellow, said: “The finding is especially concerning amid growing evidence that sanctions pose harm to the health and finances of claimants and can damage their relationship with their work coach.
“Research published last year by Public Law Project revealed that people who try to question their sanctions face a complex, punitive, and unaccountable system in which legitimate challenge can feel futile.
“The secretary of state for work and pensions [Mel Stride] has pointed to the importance of having an ‘honest appraisal’ of everything the DWP does – he must now commit to re-establishing this review alongside publishing the DWP’s existing internal review so that the findings can be properly scrutinised and shaped into much-needed system reform.”
Last year, the Guardian reported how DWP had carried out its own internal research on the effectiveness of sanctions, and promised to publish the findings, but then blocked a request by sanctions expert Dr David Webster to release the report.
Webster, an honorary senior research fellow at the University of Glasgow’s School of Social and Political Sciences, has been publishing regular, influential briefings on DWP sanctions for more than nine years.
He told DNS that the independent review scrapped by Coffey “would have highlighted some of the most serious problems with the current sanctions regime”.
A decade on from the introduction of a new sanctions regime by the coalition government, there has still not been a “comprehensive review” of how it is working, he said.
He called on ministers to think again and commission an independent review.
He said: “What this tells us is that Therese Coffey escalated sanctions to a level higher than we had before the pandemic without having the evidence that an independent review would have given her, and that is very disappointing.”
Among the most serious problems with the regime, he said, was the difficulty many claimants face in repaying hardship payments they often receive after they are sanctioned, which he said was “responsible for a great deal of hardship” later on.
He has estimated that the average duration of a sanction was now about 11 weeks.
An independent report, commissioned by DWP, was carried out by Matthew Oakley and published in 2014, but it only examined sanctions for jobseeker’s allowance claimants who failed to take part in back to work schemes.
Webster said: “I think Amber Rudd had the right idea, and it’s a great pity that she lost the job of secretary of state before she had the chance to carry this good idea through.”
A DWP spokesperson declined to justify the decision not to carry out an independent review now the worst of the pandemic was over, or to explain why it believed there should not be proper research into DWP’s sanctions policy and delivery.
But the spokesperson said in a statement: “People are only sanctioned if they fail, without good reason, to meet the conditions they agree, and emphasis is placed on protecting vulnerable claimants.
“If a claimant disagrees with a sanction, they can ask for this to be reconsidered and can appeal to an independent tribunal.”
Among those disabled people whose deaths have been closely linked to the sanctions regime was David Clapson, who died in July 2013 after being left destitute by having his benefits sanctioned.
In 2015, DWP admitted that 10 of 49 benefit claimants whose deaths had been investigated through secret “peer reviews” between 2012 and 2014 had had their payments sanctioned.
And in December 2022, MPs were warned that the “aggressive attitude” on benefit sanctions that was taken by DWP in the coalition years of 2013 to 2015 was “back with a vengeance”.
The latest documents are likely to add to concerns that DWP has no interest in improving the safety of its sanctions regime.
DNS has previously shown how the DWP Excellence Plan, and Rudd’s apparent attempts to create a safer culture within DWP, were watered down in at least six ways in the three years Coffey was secretary of state for work and pensions.
The new documents released by DWP now show a seventh significant way in which the plan was watered down by Coffey.
She left the post in September 2022 when she became health and social care secretary and deputy prime minister under prime minister Liz Truss, although she was later sacked from both posts when Truss resigned and is now environment secretary.
26 January 2023
Second Labour-led inquiry in two months fails to demand end to care charges
A second inquiry in two months has issued a call for wholesale reform of the social care system without delivering a clear and urgent demand for an end to care charges.
Reimagining Care was commissioned by the Archbishops of Canterbury and York, and this week its report called for investment in communities, a stronger role for the state, a “new deal” for unpaid carers, and an “acceptance of our mutual responsibilities as citizens”.
It calls on the government to restore the level of local authority funding for social care to “at least the levels that would have been spent if funding had kept pace with inflation and changing demography over the past decade”, so more disabled and older people with “moderate needs” would receive care and support.
And it says the state should “define more clearly the rights and entitlements people can expect”.
But the report makes almost no mention of the demand from the disabled people’s movement for an end to all charges, even though research shows tens of thousands of disabled people every year are having debt collection action taken against them by their councils over unpaid charges.
The press release issued alongside the report makes no mention of care charges, and the report itself makes only a brief reference to charging.
Although it calls for an independent review of charges, the report suggests only that such a review should set out a timetable for reducing and “eventually” ending care charges.
It is now the second inquiry led by a Labour politician that has reported in the last two months and has all but ignored calls for an end to charging.
The Archbishops’ Commission on Reimagining Care was co-chaired by Dr Anna Dixon, who is fighting a seat for Labour at the next general election.
Last month, the Lords adult social care committee – chaired by Labour peer Baroness [Kay] Andrews – focused heavily on the needs of unpaid carers and ignored the issue of care charging.
Labour’s shadow health and social care secretary Wes Streeting has made it clear that the party will prioritise increasing the wages of care workers above the need to eliminate care charges, if it wins power at the next general election.
This week’s report also angered disabled activists by highlighting a segregated institution for disabled people – one of the Camphill “communities” – as an example of what “reimagined care” looks like.
And there was concern over some of the language in the report, including the statement: “Sin is a form of cognitive blindness.”
The commission appears to have carried out a certain level of consultation before writing its report, including a survey, discussions with the DPO Forum England, a series of round-table events, including one organised by Disability Rights UK (DR UK), and a meeting with the Church of England’s own Diocesan Disability Advisers’ Network.
Mark Harrison, from Disabled People Against Cuts (DPAC) Norfolk, who has played a leading role in drawing up plans for an end to care charging through a National Independent Living Support Service (NILSS), said: “The report is disappointing because they consulted disabled people’s organisations (DPOs) as part of the process.
“It is less reimagining, more tinkering around the edges.
“We all know social care is broken beyond repair and is a 20th century response to 21st century challenges.
“They rejected DPOs’ vision for a National Independent Living Support Service based on the UN Convention on the Rights of Disabled People, in favour of protecting the profits of the private sector and keeping the tax on disability that is social care charging.
“What disabled people of all ages need is a right to independent living, a national independent living service funded through direct progressive taxation, free at the point of use and delivered through peer support and public not-for-profit organisations.”
Paula Peters, a member of DPAC’s national steering group, said the use of language in the report was “appalling”.
She said: “The Church of England is a rich institution which has no idea about social care and would be quite happy to put disabled people in institutions.
“Why are they not demanding the immediate end of care charging?
“The appalling levels of social care charging in England are pushing disabled people into further poverty, chased by local authorities for money disabled people simply haven’t got.”
But Fazilet Hadi, head of policy for DR UK, was more supportive of the report.
She said: “Disabled people are, for want of a better phrase, a broad church.
“The bulk of the report is overwhelmingly positive – a radical vision for the right to truly dignified care which is strongly seen as the right to a high quality life, not just basic washing, toileting, eating and drinking – life in all its fullness – robustly researched by allies who want to see a better world for disabled people.
“While some of us may object to the language used in places, and some of the points made, it would be detrimental to the national conversation on social care to focus on these aspects rather than the deep and pressing need for huge amounts of funding to completely transform a hideously failing system.”
Anna Severwright, a disabled member of the commission and a convenor of Social Care Future, said she could not speak for the commission but supported the report’s general findings.
Asked why the commission failed to call for an immediate end to care charges, a spokesperson for the Reimagining Care Commission pointed to remarks made by the Archbishop of Canterbury, Justin Welby, at the report’s launch.
He told the launch: “Before we think about how to fund social care, we need to step back and consider the nature and purpose of care and support.
“In other words what do we want to fund? What are the values which underpin care?
“How do we support one another to live well and participate in our communities, regardless of our age or ability?”
Asked about the language used in the report, including describing sin as a “form of cognitive blindness”, she said: “As you would expect from a commission tasked with looking at care and support, the draft was shared before it was published with a range of stakeholders with lived experience for their feedback on the content of the report.”
And she said the commission had seen examples “of all kinds of care”, with Esk Valley Camphill Community “one such of excellent practice which was selected for inclusion in the report”.
26 January 2023
Silent vigil will mark latest stage in fight for second Jodey Whiting inquest
Disabled activists and allies will hold a silent vigil outside the Royal Courts of Justice on Tuesday to mark the latest stage in the fight for a second inquest into the death of Jodey Whiting.
Joy Dove, Jodey’s mother, has been fighting for justice for her daughter for nearly six years, and remains convinced that the actions of the Department for Work and Pensions (DWP) pushed her to take her own life.
The mother-of-nine and grandmother, from Stockton-on-Tees, took her own life in February 2017, 15 days after her employment and support allowance (ESA) was mistakenly stopped by DWP for missing a work capability assessment.
The first inquest into her death lasted just 37 minutes, but no evidence was taken on DWP’s role in causing her death.
Her mother had tried to raise concerns about her daughter’s death with the coroner’s office, arguing in two letters that she believed DWP played a key part in her daughter’s decision to take her own life.
Dove’s letters were read out at the inquest and she gave brief oral evidence, but there was no probing of DWP’s role in the death by the coroner, and there were no DWP witnesses.
The coroner mentioned the ESA claim and the family’s concerns, but said it was not the inquest’s role to investigate or comment upon DWP’s failings, or to question its decisions.
Although she ruled that Jodey Whiting had taken her own life, there was no criticism of DWP.
Dove has now spent years fighting for a second inquest that would investigate the impact of DWP’s failings.
When the case reached the high court 19 months ago, DWP claimed Jodey Whiting’s death was not part of a widespread “systemic” problem, despite years of evidence to the contrary.
This includes nearly a decade of high-profile tragedies, legal cases, campaigns, research, protests, television exposés, parliamentary debates, and reports by MPs and other organisations into deaths linked to the department’s “fitness for work” regime.
Evidence of the systemic flaws within DWP’s benefits systems has continued to emerge since the hearing.
Last September, Disability News Service reported how a disabled woman whose body was found in her flat months after all her benefits had been removed had been hounded for years by DWP.
Last November, DNS reported how another disabled woman who was left traumatised by the daily demands of universal credit took her own life, just four days after being told she would need to attend a face-to-face meeting with a work coach.
And this week (see separate story), DNS is reporting how the deaths of scores of claimants in the last three years have been linked to persistent, systemic flaws in the way their benefits have been managed by DWP.
A document, released by DWP following a freedom of information request, shows numerous deaths of claimants have been linked to flaws in the universal credit, complaints, personal independence payment (PIP) and work capability assessment systems.
The document lists recommendations made by secret DWP internal process reviews (IPRs) that were completed between 1 September 2020 and 14 November 2022 following the deaths of 46 claimants.
On Tuesday (31 January), a two-day appeal will begin into the high court’s decision not to grant a second inquest into Jodey Whiting’s death. The hearing can be watched online.
Disabled People Against Cuts has organised a silent vigil that will take place outside London’s Royal Courts of Justice on Tuesday, from 9.15am, with those attending asked to wear dark clothes and bring a white flower.
Joy Dove told DNS today (Thursday) that she was pleased and grateful that disabled activists were holding the vigil.
She said: “It’s a really good tribute to Jodey. It will mean that it’s not just me on my own, because I know that other people are fighting for rights for everyone.
“I feel extremely privileged to have them there and thank them very much.”
She said she still could not believe how many people have supported her fight for justice over the last six years.
She said she would not give up her fight. “It’s just the same as when I started. I need to carry it on.”
Asked if she had ever stopped feeling that DWP was to blame for Jodey’s death, she said: “No, and I never will.”
She also continues to back calls for a public inquiry into deaths linked to DWP’s actions.
She said earlier this week: “I have always been convinced that the original inquest into Jodey’s death just did not sufficiently answer the questions about how Jodey came by her death and I have always been convinced that the DWP decision to cancel her benefits was a key factor in Jodey’s decision to end her own life.
“The DWP’s actions and lack of action has now been described as shocking, yet the impact on Jodey and my belief that this caused her death has never been investigated and I want a second inquest to do that.
“I was devastated by the high court’s decision and I am grateful that there will be a Court of Appeal hearing.
“I am looking forward to the hearing and trust the judges to make the just and right decision when they have heard the arguments from my legal team.”
Her solicitor, Merry Varney, a partner in Leigh Day’s human rights department, said: “It is beyond doubt that the Department for Work and Pensions acted woefully in their administration of and ultimately cancellation of Jodey’s benefits, and we hope the Court of Appeal will agree it is necessary in the interests of justice for there to be a second inquest into Jodey’s death.”
DWP does not comment on ongoing legal cases.
26 January 2023
Disability poverty campaign calls on PM to act urgently on prepayment meters
Disabled people’s organisations and allies have written to the prime minister to call for an immediate ban on energy companies forcibly installing pre-payment meters in the homes of disabled customers who have fallen into debt.
The Disability Poverty Campaign Group (DPCG) says the consequences of the government failing to act immediately on the widespread practice would be “devastating” for disabled people.
DPCG believes there are now about one million homes where someone is disabled and paying for gas or electricity through a prepayment meter.
If they cannot afford to top up their prepayment meter, they are not able to access energy in their homes, a process known as “self-disconnecting”.
DPCG points out in this week’s letter to the prime minister, Rishi Sunak, that disabled people in the UK are far more likely to be living in poverty than non-disabled people, with a recent survey finding two-fifths of them say they could not afford to keep their homes warm, compared with one-fifth of the non-disabled population.
And it says there is mounting evidence of energy companies seeking warrants – which must be signed by magistrates – giving them permission to forcibly install prepayment meters in the homes of disabled customers who have fallen into debt.
DPCG told Sunak that such a process “must be terrifying” for their customers.
Debt collection agents working for gas and electricity supply companies have used more than 490,000 warrants to forcibly install prepayment meters since July 2021, the letter says.
Energy companies are also automatically switching smart meters to prepayment mode when a customer falls into debt on their bill.
Earlier this month, Citizens Advice said its research showed 3.2 million people across Britain ran out of credit on their prepayment meters in 2022 because they could not afford to top them up.
One disabled mother of a disabled daughter described how her supplier switched her smart meter to prepayment mode without warning after she struggled to cope with rising energy bills and got into debt.
She said: “One evening just before Christmas my power went off. I assumed it was a power cut.
“I had no way to make any calls, so my daughter and I were left in the dark all night with no heating, lights or means of making any food. I was really anxious.
“I went to my local Citizens Advice when the power didn’t come back on the next morning.
“They spoke to my supplier and found out they’d switched my smart meter to prepayment mode.
“I explained that I was on the priority services register.
“I also said I’m in a wheelchair and unable to access my meter, but none of it made a difference.
“I’m now reliant on my sister or her husband to go to the post office to help me top up my meter.
“Over Christmas I went without energy because the credit ran out, and the post office was closed, so my daughter and I sat there cold, in the dark. How can I live like this?”
The Disability Poverty Campaign Group told the prime minister this week in its letter that it accepts that business secretary Grant Shapps has now asked energy companies to stop forcing financially vulnerable households to switch to prepayment meters – which are also more expensive – but they say this stops short of an outright ban.
It also wants a ban on energy companies automatically switching smart meters to prepayment mode when a customer falls into debt on their bill.
And it wants the industry to stop collecting customers’ debts via their prepayment meters.
DPCG wants legislation to end forced prepayment meters by the beginning of next winter.
And it wants increased penalties for energy companies that breach their duties to disabled customers.
The letter also calls on the government to increase cost-of-living payments to disabled people, accusing ministers of being “out of touch with the reality” of disabled people’s lives.
It says in the letter: “We are writing to call your urgent attention to the deepening and devastating levels of poverty faced by disabled people in the UK and the fact that Government financial support, in the shape of cost-of-living payments and the energy price guarantee, are nowhere near enough to counter the now undisputed depths of disability poverty.”
It warns that disabled people are rationing how often they use medical equipment such as oxygen concentrators, and how frequently they charge their wheelchairs and mobility hoists.
Some are turning off the heating, even if they cannot regulate their own body temperature, which can cause health problems that lead to hospitalisation.
The energy regulator, Ofgem, has rules that mean disabled people and other groups should not be forced onto a prepayment meter.
After Citizens Advice raised concerns to the regulator and the government that it had seen evidence of suppliers forcing people in these groups onto prepayment meters, Ofgem warned suppliers that it must do more to identify customers in vulnerable circumstances before installing a prepayment meter.
But in the month following that intervention, more than a third of prepayment meter households that included a disabled person or someone with a long-term health condition – 470,000 households – were cut off from their supply at least once.
A government spokesperson told Disability News Service yesterday (Wednesday): “Last week, the business secretary wrote to energy suppliers calling on them to stop moving customers over to prepayment meters without taking every step to support those in difficulty.
“Switching users onto a prepayment plan should only ever be a very last resort and suppliers have a duty to exhaust all other avenues.”
The Department for Business, Energy and Industrial Strategy (BEIS) said Shapps had asked suppliers to provide data showing how many warrants they have each requested to allow them to forcibly install prepayment meters, so ministers can name and shame the worst offenders.
Energy and climate minister Graham Stuart met energy suppliers, Ofgem, Energy UK – the trade association for the energy industry – and Citizens Advice yesterday at BEIS to ask suppliers why they were forcibly fitting so many homes with prepayment meters.
He was set to tell them they must instead offer struggling customers more help first, and to commit to end this practice for the remainder of this winter.
BEIS also insists that there are strong regulatory protections in place to support prepayment meter customers.
But BEIS had not said by noon today if it was ruling out an outright ban on forcing households which include disabled people to switch to prepayment meters, and the other calls made by DPCG.
DPCG is now asking supporters to write to their MPs, asking them to press the government to act on pre-payment meters.
Among the members of DPCG are Inclusion Barnet, Bristol Reclaiming Independent Living, Disability Rights UK, Chronic Illness Inclusion, Disability Positive, Inclusion Scotland, WinVisible, The Disability Union, Real, Merton Centre for Independent Living, Harrow Association of Disabled People, and Greenwich Disabled People Against Cuts.
26 January 2023
‘Halt new mental health bill until there is a public inquiry into deaths and abuse’
Disabled campaigners are calling on the government to halt its reform of the Mental Health Act until there is a public inquiry into the “appalling failings, abuse and high levels of deaths” in mental health services across England.
They say that no effective reform can be carried out until the “dreadful state of affairs is both investigated and addressed decisively”.
Last week, a report on the draft mental health bill by a joint committee of MPs and peers was described as “seriously flawed and discriminatory” after it failed to call on the government to deliver immediate “root and branch reform”.
The rights-based organisation Liberation is now leading other disabled-led organisations in a demand for a halt to work on the bill until the failings, abuse and deaths are investigated by an independent inquiry.
They point to a series of scandals relating to care in mental health units.
They include an ongoing independent inquiry into 2,000 deaths linked to mental health wards run by Essex Partnership University Trust over a 21-year period.
Among many other scandals, there have been allegations relating to mental health services for teenagers run by the former Huntercombe Group; claims uncovered by a BBC Panorama documentary about abuse at the Edenfield Centre near Manchester; and the deaths of three teenage girls let down by “systemic failings and dangerous and coercive culture and practice” at services run by Tees, Esk and Wear Valleys NHS Foundation Trust.
Disabled-led organisations supporting Liberation’s call for a halt to work on the draft bill include Disabled People Against Cuts (DPAC), Disability Rights UK, Community Navigator Services and Speak Out Against Psychiatry (SOAP).
Dorothy Gould, founder of Liberation, told Disability News Service this week that evidence from these scandals “fits all too closely with other emerging evidence, experiences of my own and experiences described by peers of mine elsewhere”.
She said: “Unless this dreadful state of affairs is both investigated and addressed decisively, there can be no effective reform of mental health law.”
She said that the recommendations made by the joint parliamentary committee in last week’s report “barely touch on abuse in these services” and that such abuse, neglect and resulting suicides are “all too likely to happen” until people in mental distress, people with learning difficulties and neurodivergent people secure their full human rights.
She said: “By continuing to allow at least some involuntary detention in psychiatric hospitals, forced treatment and community treatment orders, the draft mental health bill does just that.”
This week, the government announced a “rapid review” of patient safety in mental health inpatient settings in England, which it said was “an essential first step in improving safety”.
Gould said the review was “something of a step forward” but would need to be heavily influenced by people with experience of being detained under the Mental Health Act.
Last week, the joint committee called for an “ongoing process” of reform in the long-term that leads in the direction of more rights-based mental health legislation, but it argued against such major reforms in the short-term because key reforms were too urgent to wait.
Gould said: “The flaw with their approach is that, if you adopt half-baked solutions, improvements to abusive services will be half-baked as well.
“At the very least, what we need is a halt to reform plans until the rapid review is complete and its findings have been taken into account.
“This needs to be followed by legal reform which will genuinely give people in mental distress, neurodivergent people and people with learning difficulties the full human rights that are an essential foundation for preventing abuse, the human rights set out so clearly in the UN Convention on the Rights of Persons with Disabilities (UNCRPD).”
Ellen Clifford, a member of DPAC’s national steering group, said: “The government must undertake a public inquiry into the appalling conditions and treatment of people with mental distress within secure facilities at the earliest opportunity.
“Pushing on with the mental health bill will not solve the deep-rooted rot within the mental health system.
“Abuse, mistreatment and gross neglect are all symptomatic of a system that is structured around unequal power dynamics, discriminatory attitudes, coercion and force.
“The bill must be halted for an inquiry to happen and for this to then lead to fundamental reform of the system and a radical shift in how mental distress is understood and treated.
“To stress, DPAC is not saying that improvements in the mental health system should be stopped meanwhile.
“Services should be reviewing how they work and ensuring patient safety and well-being, regardless of where the new bill is up to.”
Cheryl Prax, from SOAP, also supported the call for a halt to work on the mental health bill.
She said: “There needs to be a radical overhaul of the Mental Health Act.
“Small changes cannot be considered urgent if they do not alter the inhumane treatment that so many people suffer from in the mental health system as it has been for many years under the hands of psychiatry.
“Stories of inhumane treatment of patients in the press recently show the urgency of a radical reform.
“The draft mental health bill can and must also be delayed until findings from the rapid review are available.
“The current approach to mental health reform brings to mind the old saying, ‘to put lipstick on a pig’. It is not going to make the pig any prettier, or more useful.
“The fundamental human right of freedom to choose is still not addressed by the changes.
“You can choose whether or not to have physical treatment and criminals cannot be locked up for something they might do but as soon as a psychiatrist decides, in his opinion, that you are incapable of knowing what is best for you, you can be locked up, forcibly given brain- and body-damaging drugs and ECT [electroconvulsive therapy] against your will, and against the will of your relatives, time and time again.
“Some people caught up in this non-compassionate merry-go-round see no way out and kill themselves because of it.
“Absolutely fundamental change is needed.”
Clenton Farquharson, from Community Navigator Services (CNS), a user-led community interest company that works in areas such as advocacy, co-production and inclusion, also supported Liberation’s call.
Farquharson, who is chair of Think Local Act Personal – although not speaking in that capacity – said CNS “supports Liberation very strongly”.
He said the draft bill “falls well short of the fundamental human rights” set out in UNCRPD.
He said that any mental health bill “must start from the assumption that people given a mental health diagnosis, people with learning difficulties and people with autism should have the same human rights as anyone else, including the right to live in the community, with whatever support is needed, free from detention on the basis of disability and institutionalisation”.
Inclusion London said work on the new mental health bill should be halted until it was made compliant with UNCRPD.
It welcomed the announcement of a rapid review, which it said should investigate the failings of patient safety in hospitals, and whether hospitals were safe places, as well as examining alternative community provision, which was “more likely to promote safety and wellbeing”.
An Inclusion London spokesperson said: “The investigation must be led by disabled people with lived experience of hospital detention.
“We hope it will expose how existing system is not fit for purpose and show again how urgently we need a radical reform.”
But it said the rapid review “should not be used as an excuse to do nothing.
“Actions such as redrafting of the bill to make it compliant with UNCRPD, as well as taking steps to fund and put support in the community, could and should be taken now.”
The joint committee on the draft mental health bill was set up to produce the report and so no longer exists, and its chair, the Tory peer Baroness Buscombe, declined to comment this week.
A spokesperson for the Department of Health and Social Care said: “We have announced an eight-week rapid review into patient safety in mental health inpatient settings in England, which is an essential first step in improving safety in mental health inpatient settings.
“It will focus on what data and evidence is currently available to healthcare services, including information provided by patients and families, and how we can use this data and evidence more effectively to identify patient safety risks and failures in care.
“We are reviewing the joint committee’s recommendations for the draft mental health bill and will respond in due course, before bringing forward a revised bill when parliamentary time allows.”
DHSC said it had not ruled out a public inquiry, despite the rapid review.
It said the Essex inquiry would produce recommendations to improve mental health care not only within Essex, but also across the NHS and the wider system.
NHS England has commissioned investigations into the allegations relating to the Tees, Esk and Wear Valleys NHS Foundation Trust and those at the Edenfield Centre.
And it says two hospitals run by Active Care (formerly the Huntercombe Group) are subject to close and ongoing monitoring by the Care Quality Commission and NHS England, while local trusts are working with the two hospitals to improve their services.
26 January 2023
Investigation reveals ‘discrimination and hostility’ faced by disabled parents
Parents with learning difficulties in England are more than 50 times more likely to have their child taken into care than other parents, an investigation has found.
Channel 5 News worked closely with the disabled women’s organisation WinVisible and fellow campaign group Support Not Separation (SNS) on the investigation, which was broadcast last night (Wednesday).
The results are based on freedom of information responses from 116 local education authorities in England.
In 5,820 cases of a child being taken into care, social workers had been concerned that the parent had a learning difficulty; and in 5,405 cases, social workers had been concerned that the parent had a physical impairment.
The investigation found that 8.1 per cent of all children taken into care were removed from their family home after social workers identified their parent’s learning difficulty as a factor of concern during an assessment.
Channel 5 News said that, as estimates suggest that only 0.15 per cent of adults have a learning difficulty and are parents, this means they are more than 50 times more likely to have their child removed than a parent without learning difficulties.
Anna, a parent with learning difficulties, has had all three of her children adopted, with the youngest adopted last year when just nine months old.
Anna told the programme: “I find it really upsetting and I’m hurt because I’m not going to see my children now until they are 18.
“I feel like there is a lot of people out there that have got their kids and got a chance because of the support they got, so I wish I had the right support.
“I wouldn’t have any more children, because since having my third child I’ve realised I can’t keep putting myself through it, it’s too much pain and it’s hurting.”
WinVisible and SNS said the results of the investigation confirmed the “discrimination and hostility” faced by disabled mothers, single and working-class mothers, and mothers of colour, who “face an uphill battle to stop social workers and the family courts taking our children from us”.
Tracey Norton, coordinator of WinVisible’s Disabled Mothers’ Rights Campaign, told Disability News Service: “The research helps to quantify the discrimination that we have been protesting against, which wrecks the lives of disabled mothers and our children.
“Councils refuse mothers the support we are entitled to under the Children Act and the Care Act but spend many more millions on taking our children from us and placing them in institutions run mostly by private companies profiteering from our pain.”
She said that mothers with learning difficulties, mothers with invisible impairments such as ME and Ehlers-Danlos Syndrome, and autistic mothers, were being targeted, “especially if we are working-class and those of us who are mothers of colour are particularly vulnerable as we are more likely to have a disability and ill health due to health inequality”.
She said: “Disabled children removed from their disabled mothers, despite never suffering any harm in their mothers’ care, are four times more likely to be abused in care.”
She added: “Disabled mothers and single mothers generally are more likely to be living in poverty, and social services use our poverty as ‘neglect’ to remove our children.
“Living costs are higher for disabled mothers, made worse if our child also has a disability, and we often have to cut back on food to feed our children.
“We must be able to ask social services for the financial and other support we are entitled to but many of us do not because we know we will be judged and discriminated against and our children removed.
“No child should ever be removed because government policies have impoverished their mothers.”
WinVisible and SNS are calling for an overhaul of children’s social care to prioritise support for mothers and other primary carers to keep children and families together.
They are also demanding a “care income” for mothers (and other carers) who care for and raise children.
They say there are now more than 80,000 children in state care, with millions of pounds being poured into the private companies that dominate the fostering and adoption industry.
And they say that some multinational companies charge councils up to £1 million a year to keep a child in care, while mothers and children “are impoverished and discriminated against, refused the support we are entitled to”.
Anne Neale, from SNS, said: “Our experience is that mothers are targeted for child removal by sexism, racism, disability discrimination and pervasive class bias in the ‘child protection’ system and in family courts.”
Channel 5 News spoke to Jean, who has a physical impairment and had her baby taken into care 18 years ago and was then adopted at the age of two.
She told 5 News: “Every appointment that I went to, the first thing that was put on the table was the abortion paperwork. All I had to do is sign it… but I don’t believe in abortion.”
After her child was born, she was “still fighting social services to try and be able to look after her, get the right help and support I needed to do what everybody was telling me that I couldn’t”.
Her child Tye is now 19 and although Jean won an appeal five years after the adoption, she was not allowed any contact with Tye because the adoption order could not be overturned.
Tye found their birth mum on Facebook last year and they have now met face-to-face for the first time.
Jean said: “Time was stolen from us where we’re being punished for something that was not my fault.
“And we now have a lot of work to try to do, to try and get to that normal parent child relationship.”
Tye said: “That was a good 18 years. That’s my whole existence. I can’t get that back. But I could have had her growing up.
“I could have had someone that fought for me relentlessly, and I didn’t get that, and I should have.”
Andy Bilson, a professor of social work, told 5 News: “It’s difficult in an environment in which there is massive reductions in support and in services.
“Social workers are busy and they’re making decisions quickly… increasingly what they do is take what appears to be a safe option, which is to remove the children.”
The Department for Education told 5 News: “We want every child to be in a loving, stable home that’s right for them, and any instance of a child being removed from their parents is deeply distressing.
“In most cases children are best looked after by their families and courts will only remove children as a last resort, when it is in the child’s best interests.
“These decisions are based on the needs of the child, and local authorities cannot discriminate based on any protected characteristic, including disability.
“We are bringing forward wide-ranging reforms to children’s social care to ensure families receive appropriate and timely decisions from family courts and to make sure we have a system that works for all.”
26 January 2023
Other disability-related stories covered by mainstream media this week
Soaring energy bills are forcing people with severe disabilities and chronic health conditions to choose in extreme cases between “eating or breathing” as they struggle to navigate the cost-of-living crisis, research shows. According to a survey by the charity Euan’s Guide, people are either opting to reduce their use of vital, energy-intensive electrical medical aids and equipment – putting their health in jeopardy – or where this is impossible, cutting back drastically on food, heating and travel: https://www.theguardian.com/business/2023/jan/22/energy-costs-disabled-people-cost-of-living-crisis
An “inaccessible” railway station is to get a new bridge and three lifts installed after a long-running campaign. Work on the Access for All project at Flitwick in Bedfordshire will start in the summer and should be complete by March 2024, the train operator Govia Thameslink said. Currently passengers who wish to travel south from the station – but cannot cross the railway bridge – have had to be taxied to Luton Parkway, according to Ian Cook, who leads the Step Free Access group for disabled people: https://www.bbc.co.uk/news/articles/c72qj230xg3o
26 January 2023
News provided by John Pring at www.disabilitynewsservice.com
Dear DPAC:
This tells me that disabled people’s lives are cheap, and not enough people care about our suffering. And there is little we can do about it.
How I manage to continue wanting to live in the face of such grim reading, is beyond me.
Keep the pressure up…
Best wishes,
Rona Topaz