DWP hounded disabled woman for years before her ‘starvation’ death, papers show
A disabled woman whose body was found in her flat months after all her benefits had been removed had been hounded for years by the Department for Work and Pensions (DWP), and repeatedly failed by other public bodies, documents have shown.
Sophia Yuferev, a talented artist who lived with significant mental distress, had been living on a sandwich a day for the last few months of her life after both her employment and support allowance (ESA) and her personal independence payment (PIP) had been stopped.
Her body was discovered by police in her flat in Hornchurch, Essex, in November last year, weeks after she had died.
Her electricity had been cut off months earlier for non-payment of bills.
Two months before she died, Havering council sent her a summons for non-payment of council tax, and the previous year she had faced eviction by her housing association for non-payment of rent.
Although her family alerted her mental health team to the financial problems caused by DWP cutting off her benefits, they say nothing was done to help her.
DWP told Disability News Service (DNS) this week that it has carried out an internal process review (IPR) into the circumstances surrounding Sophia’s death and her benefit claims, although – as with all IPRs – this will be kept secret and not shared with her family.
The details surrounding Sophia’s death are being published by DNS just two days after work and pensions secretary Therese Coffey was promoted to deputy prime minister and health and social care secretary by her close friend, the new prime minister, Liz Truss.
DNS also learned this week that, due to the evidence of failures by several local agencies, a statutory safeguarding adults review (SAR) is likely to take place into her death.
The Care Act 2014 states that there should be an SAR if there is concern over the way local agencies worked together to safeguard an adult who died due to abuse or neglect.
Sophia’s is the latest of countless deaths over the last decade to have been linked to DWP’s actions and its failure to ensure the safety of its benefit claimants.
An inquest in July concluded that her death was due to ketoacidosis of “unknown” cause, but DWP was not asked to give evidence to the inquest.
The inquest had heard that one of the causes of ketoacidosis is starvation, and Sophia had told her mother that she had been living throughout the last summer of her life on one sandwich a day from a local café.
She dreamed of buying a rundown bungalow in Cornwall, so did everything she could to protect the small amount of savings she had, particularly as she was living in constant fear of DWP stopping her benefits.
After her death, her family discovered documents that showed how DWP had hounded Sophia over her benefit claims for several years, with the first documented removal of her ESA dating back to 2014, and evidence of a PIP removal in July 2017.
Although they have only been able to piece together a small part of her interactions with DWP, the documents her family have collected show both her PIP and ESA were repeatedly removed and then eventually reinstated.
DWP should have been aware of her significant mental distress, history of suicide attempts and detentions under the Mental Health Act.
Sophia had been sectioned on numerous occasions, including on 27 November 2019, just 10 days after DWP wrote to tell her that her PIP was ending because she had failed to return a review form on time.
Three months later, Swan Housing Association threatened her with eviction because of non-payment of rent.
It is believed this was because her ESA had again been stopped by DWP.
Documents suggest that her PIP was eventually reinstated in January 2020, and her ESA later that year, but her PIP was then removed again in February 2021 and her ESA removed again in April 2021.
Days after she is believed to have died, last October, DWP wrote to her to say that it was reinstating her PIP.
Months later, in March this year, Jobcentre Plus wrote to her mother to tell her that it would be making a back-payment for ESA from 17 April 2021 to 16 November 2021, the day Sophia’s dead body was discovered by police.
Sophia, who was 37 when she died, had a diagnosis of paranoid schizophrenia, and during her frequent periods of psychosis she would turn on her mother, who lived nearby, accusing her of collaborating with the police.
On several occasions she had run away – to local woodland, where she had lived for several months, to Siberia, in the middle of winter, and to Israel – to escape those she believed were conspiring against her.
Because of her paranoia, she had no television, rarely used her computer, and would often throw away her mobile phone and change her number because she thought it was being bugged.
Her family say she was forced to keep a phone by her mental health team so they could keep in contact with her.
During 2019, Sophia had accused her mother and female neighbours of being witches, and once accused a woman walking her dog of sending messages to the police.
She would turn up outside her mother’s house at 7am, screaming abuse, and threatening to burn the house down, and at one stage tried to climb the telegraph pole outside her house.
She was unable to shop or cook, and shopping online was difficult because she did not like to use the computer and was scared to open the door to deliveries.
Despite her enduring and significant mental distress, and inability to cope with day-to-day life, her benefits were still repeatedly stopped and then reinstated by DWP.
After living with her mother and step-father for many years, she had moved into nearby sheltered accommodation for two years, but was moved to a housing association flat without – her family say – any assessment of her needs being carried out by the local mental health trust, North East London Foundation NHS Trust (NELFT).
Despite attempting to take her own life several times when she was younger, and reporting how a “demon” in her head was telling her to take her own life, she was given a new flat yards from the A127 dual carriageway.
Her family say the flat was “uninhabitable” when she moved in: “very dirty”, with no working appliances, “full of rubbish and filth and with huge holes in the floor”.
They say it was completely unsuitable for someone with her levels of mental distress and instability, with the dual carriageway in front of the windows.
Her mother, Maria Stockdale, who is also disabled and unable to work, said her daughter had visited her regularly during the summer of 2021, and told her she was surviving on a sandwich and a cup of coffee a day because all her benefits had been removed by DWP.
Her mother would always feed Sophia when she visited, but the family believe the rapid fluctuations in her blood sugar levels caused by periods of near-starvation were linked to her death.
She was being given injections of flupenthixol – a powerful anti-psychotic, which is linked to an increased risk of diabetes – every two weeks, but the trust had failed for two years to ensure she received the three-monthly blood tests she needed, the family say.
They believe that the rapid fluctuations in her blood sugar levels, caused by not having enough money for a proper diet after her benefits were cut, led to the ketoacidosis and caused her death.
Her mother says Sophia had been complaining of extreme fatigue for the last year of her life – a symptom of diabetes – and had not had an in-person appointment with the psychiatrist who prescribed the flupenthixol for two years.
In late September 2021, Sophia had another psychotic episode and again cut off contact with her mother.
After 3 October, when she told Sophia that her grandmother had died, there was no reply to further messages, but NELFT refused to respond to her mother’s repeated calls raising concerns about her daughter.
The inquest heard that the trust had been significantly under-staffed, and the family believe that, because of staff sickness, Sophia did not have anyone acting as her care coordinator for months, with the trust relying on temporary staff who did not know the details of her case.
Her mother, who was unable to attend the inquest because she was in hospital, says NELFT had failed repeatedly to provide proper care for her daughter since the family moved to the area in about 2010.
The trust had failed to note her non-appearance for a fortnightly anti-psychotic injection on 26 October until a new coordinator examined her file on 8 November, tried unsuccessfully to contact her, and alerted the police a week later.
The coroner concluded, in a narrative verdict, that it “was not recognised” that she had failed to attend the 26 October appointment due to “Covid related work loads and staff sickness” but that it was “not possible to say if earlier follow up would have altered the outcome”.
Sophia’s mother, Maria, told DNS: “Every single one contributed to her death: DWP, the council, the housing association, the mental health trust, everyone. They all failed her.
“All of them contributed to killing my daughter, piece by piece. It is 10 months now, but still I can’t accept it.
“Everyone carries on working, everyone carries on getting wages. I am just crying every day.
“I lost my daughter. I have only tears and the graveyard.”
She provided permission for DWP, and the other agencies, to discuss Sophia’s case with DNS.
DWP confirmed that it has carried out an IPR into the circumstances surrounding Sophia’s benefit claims and would work with other public authorities to learn from the case.
It stressed that its decision to carry out an IPR did not mean that it had been found culpable in the circumstances or events leading to Sophia’s death.
It claimed that it did not have a statutory duty of care, although it said that this did not mean that it did not care about claimants, and that it recognised that engaging with other public authorities can help the department gather and share information about claimants who may be in vulnerable situations.
But DWP refused to answer other questions about the case, including how it justified repeatedly removing Sophia’s benefits; whether she was marked on its system as “vulnerable”; how many times it had removed and then reinstated Sophia’s PIP and ESA in the last five years of her life; whether it had been aware of her history of mental distress; and whether it accepted that her ESA and PIP had been wrongly removed in the last months of her life.
A DWP spokesperson said in a statement: “This is an incredibly sad and complex case, and our condolences are with Ms Yuferev’s family.”
NELFT also refused to answer questions about Sophia’s death, and its alleged failings.
Instead, a NELFT spokesperson said: “We would like to offer our sincere condolences to Sophia’s family and will continue to provide ongoing support and access to family liaison.
“The trust provided evidence of the care provided to Sophia at an inquest in July 2022 and have accepted the coroner’s conclusion.
“As per our trust’s serious incident process, we have undertaken a review of the care delivered and are implementing learning as a result of this review.”
Havering council said it had been unaware of Sophia’s “vulnerability”, and that she had not been known to the council’s adult social care community team.
It suggested that a safeguarding adults review would now take place.
The council accepted that it sent Sophia a summons for unpaid council tax on 16 August 2021 as a payment had not been received since June 2019, but that a payment was made on 26 August 2021.
It had failed by noon today (Thursday) to clarify who made this payment and what other action it took.
A council spokesperson said: “We send our heartfelt sympathies to Sophia’s family and friends following her tragic death.
“Had we been aware of Sophia’s vulnerability, we would have acted accordingly to stop the normal council tax recovery process.
“Sophia was not known to the council’s adult social care community team, she was receiving support from the integrated mental health service and social care team managed by the North East London NHS Foundation Trust (NELFT).
“We have taken on board the coroner’s conclusions and the outcomes of the inquest and will support NELFT colleagues with their serious incident review learning and action plan.”
Swan Housing Association refused to answer a series of questions about Sophia’s case, including why it sent letters threatening to evict her; whether it was aware of her history of mental distress; whether there was any contact with Sophia from its welfare officer in the last year of her life; if it carried out a proper assessment of her needs before she moved into the flat; and whether it had carried out an internal investigation into her death.
Instead, it released a statement stating what should have happened rather than what did happen.
Ian Haworth, Swan’s director of communities and home ownership, said: “We were deeply saddened to learn of Sophia’s death and our thoughts remain with her family.
“We are unable to comment specifically on individual cases, however, when our customers are allocated to us by local authorities, we review the customer information they provide and inspect the home to ensure it is of a good standard and meets their needs.
“When customers first receive a Swan home, and should they at any point fall into arrears, they are offered help and advice from our dedicated welfare benefits team.
“This specialist team can support Swan customers with budgeting and ensure that they are claiming all the state benefits that they are entitled to, as well as signposting them to specialised debt support services.
“They can also support customers who are struggling to pay their energy bills if the resident makes us aware of this issue; unfortunately Swan will not be informed of any issues by energy suppliers.
“Although we are required to inform customers that not paying their rent could eventually, as a last resort, lead to eviction, we will always work with customers who do fall behind in their rent to set up an affordable repayment plan.”
*The following organisations are among those that could be able to offer support if you have been affected by the issues raised in this article: Samaritans, Papyrus, Mind, SOS Silence of Suicide and Rethink
8 September 2022
New DWP boss faces claim she misled parliament over ‘fitness for work’ stats
Newly-promoted Chloe Smith faces a claim that she misled parliament about the failure of the Department for Work and Pensions (DWP) to publish “essential” figures about its “fitness for work” assessments.
The claim has emerged just days after Smith was appointed work and pensions secretary by the new prime minister, Liz Truss.
DWP has repeatedly refused calls from MPs and the UK statistics regulator to provide figures that would show how many universal credit (UC) claimants are being found “fit for work” through the work capability assessment (WCA) process.
Both Smith, previously the minister for disabled people, and Therese Coffey, until this week the work and pensions secretary, have dismissed calls to prepare and publish such statistics.
Smith told MPs on the work and pensions committee in July that it was too expensive and too much effort to produce the statistics about key parts of an assessment system linked to hundreds, and probably thousands, of deaths over the last decade.
Last December, she told Vicky Foxcroft*, Labour’s shadow minister for disabled people, in a written parliamentary answer that DWP was “unable to provide Universal Credit (UC) WCA statistics as these could only be provided at disproportionate cost”.
But yesterday, in response to a freedom of information request from Disability News Service (DNS), DWP admitted that it had no figures showing the cost of producing this new set of statistics.
It told DNS: “An appraisal of the resources needed to enable the publication of data on the Work Capability Assessment outcomes for Universal Credit claimants has not been made.”
This means that either Chloe Smith misled Foxcroft in her answer, or DWP is misleading DNS.
Smith was appointed by Truss this week to her new cabinet as work and pensions secretary, replacing Coffey, who has become health and social care secretary and deputy prime minister.
Despite ministers launching universal credit in 2013, DWP has yet to provide any statistics to show how many disabled claimants have been put through the WCA, how long they have had to wait for a WCA, what level of benefit they received following their assessment, and how many of them were being found fit for work.
Campaigners have previously described publication of the figures as “essential” and warned: “If the DWP isn’t collecting and measuring data about key aspects of universal credit then its claims that all is going well must ring hollow.”
Even though the WCA system has been closely linked to countless deaths of disabled people over the last decade, DWP produces only statistics relating to employment and support allowance (ESA) and the WCA.
Most non-working disabled people are now receiving universal credit rather than ESA, which is being phased out.
A DWP spokesperson said this afternoon (Thursday) that it “would not be appropriate for us to comment” as DNS had requested an internal review of the department’s response to the freedom of information request.
Meanwhile, the Office for Statistics Regulation (OSR) has failed to act over DWP’s continuing failure to publish the figures.
DWP told OSR last month that it will assess the “priorities” in its statistics development programme once it confirms the “resources available”.
OSR has now responded to DWP’s refusal to act but has failed to do anything except express disappointment at its position and urge it to fill the gap.
OSR’s head of casework, Siobhan Tuohy-Smith, said the failure to publish universal credit WCA statistics “leaves a gap in the information available”.
In a letter to DWP’s chief statistician, Steve Ellerd-Elliot, she added: “It is disappointing that, due to circumstances beyond your control, the Department is tolerating this significant data gap.”
But instead of demanding their publication, she only asked DWP to be “clear in its publications” about the existence of the gap.
She asked Ellerd-Elliot to ensure DWP’s “internal processes” were “progressed expeditiously”, bearing in mind the “wealth of evidence around the need for transparency around Universal Credit WCA statistics”.
Following publication of the letter, OSR told DNS: “We will continue to monitor the situation, to ensure the department makes it clear to users that this data gap exists and its impact on use and also to urge this data gap to be filled when resourcing issues become clearer.”
Asked by DNS why it had not taken stronger action, OSR had not responded by noon today.
OSR has been in discussions with DWP since DNS wrote to the regulator in March to question the department’s continuing failure to produce the figures.
*Foxcroft was not able to comment this week as she is unwell with Covid
8 September 2022
Labour faces legal action from disabled members over ‘institutional’ discrimination
Disabled activists have warned Labour that it faces possible legal action if it continues to refuse to act to end years of disability discrimination against party members.
Senior figures in the party – including leader Keir Starmer, deputy leader Angela Rayner and general secretary David Evans – have been promising for years to take action to address concerns raised by disabled members about discrimination.
But Disability Labour, which is affiliated to the party, has now lost patience at the lack of action, and this week it accused Labour of being “institutionally disablist”, and issued a series of demands.
It called on the Equality and Human Rights Commission (EHRC) to investigate the allegations, and it warned the party that legal action is likely to follow if it does not improve its treatment of its disabled members.
Disability Labour says it has received multiple complaints from its members that the party is rejecting requests for reasonable adjustments.
It has repeatedly offered to carry out disability equality training for the party at head office and regional level.
And it says that a response from the party’s Governance and Legal Unit (GLU) to one member’s request for a reasonable adjustment was “fundamentally flawed” and contradicted EHRC guidance.
The EHRC guidance (PDF) says the duty on political parties to make reasonable adjustments “is anticipatory” and that parties have a “positive and proactive duty to think about, and take steps to remove, any barriers which prevent disabled people from enjoying the rights and benefits that come with membership of the party”.
But in response to a complaint from a Constituency Labour Party (CLP) disability officer who had had a request for a reasonable adjustment rejected, Labour’s GLU claimed: “Insofar as the duty to make reasonable adjustments applies to associations such as the Labour Party, it is a reactive duty, rather than an anticipatory.”
For more than two years, Disability Labour chair Kathy Bole has been attending meetings of the party’s equalities sub-committee and has repeatedly presented it with a “long list of issues which prohibited disabled members from being able to participate fully in the party”.
These include a failure to make reasonable adjustments for members, meetings being held in inaccessible venues, discrimination within local CLPs, and the failure to commission disability equality training.
Many concerns relate to access at the party’s annual conferences, particularly those held in Brighton in 2017, 2019 and 2021.
Last year, Disability Labour received more than 100 complaints about access in the first two days of the conference.
At the party’s request, Disability Labour submitted a report on the problems at conference, but it says it received no response or feedback.
Disability Labour said this week that it continues to receive complaints from members on accessibility and discrimination within their local parties, including holding meetings in inaccessible venues, bullying, and reports of disabled members being subject to victimisation when making complaints.
Bole said: “Any disappointment I may have had at the lack of action by the party has turned into anger at the repeated refusal to accept that disabled members have a right to participate equally in political activity.
“Disability Labour continues to make offers of disability inclusion assistance and training to assist with eradicating ableism from the party.”
Disability Labour will be hosting a fringe meeting on the issue at this year’s annual conference in Liverpool.
Labour had not commented on the claims by noon today (Thursday).
Vicky Foxcroft, Labour’s shadow minister for disabled people, was not able to comment this week as she is unwell with Covid.
An EHRC spokesperson said: “People who are members of a political party and people wanting to be members must not be treated unfairly because they have a protected characteristic.
“The EHRC receives complaints each week about allegations of unlawful activity contrary to the Equality Act 2010.
“We consider each complaint carefully and take action where appropriate.”
8 September 2022
Outrage of trio of bereaved relatives as Coffey is elevated to deputy prime minister
Three disabled women who lost relatives because of Department for Work and Pensions (DWP) failings have expressed their shock and anger at the appointment of Therese Coffey as the new deputy prime minister.
Coffey, who was also appointed health and social care secretary, had been work and pensions secretary for almost exactly three years.
She has been replaced by Chloe Smith, who was minister for disabled people until this week and has been another high-profile supporter of the new prime minister, Liz Truss.
During her time as work and pensions secretary, Coffey was repeatedly criticised for her attitude to the families of benefit claimants whose deaths have been linked to her department, including refusing to meet the families to discuss their concerns.
She was also criticised for preventing the release of key details from scores of secret reports into claimant deaths.
And there has been repeated anger over her claims that her department has no statutory duty of care to benefit claimants, including those whose deaths have been caused by her department.
Today, in the week that Coffey was appointed deputy prime minister, Disability News Service has published details of the latest death of a claimant to be linked to her department’s continued failings.
The body of Sophia Yuferev was found in her flat months after all her benefits had been removed, but DNS reveals this week how she had been hounded for years by DWP (see separate story).
Public criticism of Coffey’s attitude to disabled people does not end with her failure to prevent the deaths of claimants.
She has been heavily criticised for hiding numerous DWP reports, and earlier this year MPs had to use their parliamentary powers to force the publication of a watered-down DWP report that found disabled benefit claimants had widespread “unmet needs”, and which Coffey had refused to release.
At last year’s Conservative party conference, she strongly signalled that DWP would launch a new bid to try to push more disabled people with high support needs into work, and would cut spending on disability benefits.
She even failed to sign up to her own much-criticised disability employment scheme, Disability Confident.
She also presided over the failure to offer recipients of so-called legacy benefits the same £20-a-week benefit increase given to those on universal credit.
This week, three disabled women who lost relatives because of DWP failings – Alison Burton, Imogen Day and Joy Dove – have each expressed alarm and shock at Coffey’s appointment as both deputy prime minister and health and social care secretary.
Alison Burton is the daughter-in-law of Errol Graham, who starved to death after DWP wrongly stopped his employment and support allowance, leaving him without any income.
She said Coffey’s appointment was “outrageous” and “disgusting”.
She highlighted Coffey’s repeated failure to show sympathy for the families of those who had died, and her lack of action to address DWP’s part in those deaths.
She said: “You need someone [as work and pensions secretary] who is willing to listen, whether changes were possible or not.
“It’s almost like she’s an emotionless person. She couldn’t care less what happened to Errol and she couldn’t care less what happened to the rest of them.
“If she did, she would have made an effort to meet the families, because that is the least her department owed us, to at least listen to what the families had to say.”
She said Coffey’s failure to listen and learn from her department’s mistakes had put other lives at risk.
She said: “You have to learn from mistakes that have been made. She’s not willing to do that.
“If she takes the same attitude [in her new job] she is going to destroy the NHS as well.”
Joy Dove’s daughter, Jodey Whiting, took her own life in February 2017, 15 days after she had her ESA wrongly stopped for missing a work capability assessment.
She said she was “disgusted” at Coffey’s appointment as deputy prime minister, and was another to point out how she had refused to meet the families of those who had died and discuss their call for a public inquiry into the deaths.
She said: “She has never tried to listen to what we have to say, despite what we have been through.
“I would love to meet her and say this to her face, but I think she’s a coward. She has no heart.
“I think the government will come crashing down if ever – God forbid – she’s in charge of the country.
“She has said that Jodey’s death was just a one-off, a slight hiccup, and that DWP was not responsible, despite all the deaths over the last 10 years. She knows this is not true.
“Now we are fighting back.”
Imogen Day is the sister of Philippa Day. An inquest in January 2021 uncovered 28 separate problems with the personal independence payment system that helped cause Philippa’s death in October 2019.
She said she was “disappointed” that Coffey had been appointed as deputy prime minister.
She said: “She has repeatedly refused to listen to the lived experience of bereaved families who lost their disabled family members due to issues with their benefits.
“We have been asking both personally and professionally to meet with her to discuss our concerns and offer insight. These requests have been ignored and denied.”
She said this “speaks volumes” about who Liz Truss is willing to trust as her deputy.
She added: “The pain of losing a family member due to errors of government departments is unimaginable and yet rather than grieve we have had to collectively campaign for change, and we see no end in sight to that, due to her refusal to act.”
Truss remained silent on disability policy during her leadership campaign, refusing to answer questions from Disability News Service or even from the Conservative Disability Group.
It is not yet clear who she will appoint as her new ministers for disabled people and for social care, although Gillian Keegan was still being described as the care minister on the DHSC website at noon today (Thursday).
The DWP website does not currently list a minister for disabled people, although former Department for Environment, Food and Rural Affairs minister Victoria Prentis has been appointed as a new DWP minister of state.
A DWP spokesperson declined to provide any information about the disability role this morning.
8 September 2022
PA employers cling to independence as minister tells of frustration at his own government
Disabled people have spoken this week of clinging onto their independence by their fingernails, because of a drastic and worsening shortage of personal assistants (PAs).
The shortage appears to be caused by a combination of continuing low wages, the Covid pandemic and the UK’s Brexit vote to leave the European Union (EU).
Disability News Service (DNS) has heard this week from three disabled women who have all described their fears for their independence because of the worrying shortage of PAs.
They spoke out as a government health and social care minister repeatedly expressed his frustration at the failure of different departments to work together to allow PAs from overseas to work in the UK post-Brexit.
Lord [Syed] Kamall told fellow peers that the Department of Health and Social Care (DHSC) and the Department for Work and Pensions (DWP) needed to work together on the issue, and he made it clear that “we need to look overseas” to address the shortage of PAs.
Under Home Office rules, individual disabled people cannot be the “sponsor” an overseas PA needs to be allowed to work in the UK.
But he said he had been “surprised” when he was briefed on the problem by DHSC officials and was told that it “falls between DWP and DHSC”.
Lord Kamall said DHSC officials were having conversations with DWP to “look at whether that can be rectified, or whether there is a way to find a trusted sponsor”.
He added: “Rather than thinking about whose responsibility it is, we should work together to find a common solution.”
He said the Lords debate, which had been secured by Labour’s health spokesperson, Baroness [Glenys] Thornton, would allow him to return to DHSC and “kick a few desks” and “make sure that government can look at this in a joined-up way”.
The disabled crossbench peer Baroness [Jane] Campbell had told him earlier that she had only been able to contribute in the Lords for the last 15 years because she has been supported by PAs.
She said: “Can the minister explain how the government are honouring their commitment to support disabled people’s UN convention rights to live independently, given the current PA employment crisis?
“Does he agree that fixing social care must include many different ways of attracting motivated PAs?”
Baroness Thornton said the lack of PAs was “a serious emergency” and was creating “huge anxiety” for working-age disabled people.
She said PAs from abroad must be made eligible for work in the UK, because “more than 32 per cent of them vanished as a result of Brexit”.
Baroness Campbell had told the BBC’s Nikki Fox earlier this week that the situation was so bad that she feared some disabled people would be forced back into living in institutions.
Disabled activists warned in January that it was only a matter of time before the government’s failure to address the “unprecedented” social care crisis resulted in the deaths of service-users.
Disabled People Against Cuts (DPAC) reported last year that disabled people across the country were facing serious problems in recruiting and retaining PAs and other social care staff because of the impact on staffing in the adult social care sector of Brexit and the end of EU freedom of movement.
Disabled employers of PAs told DNS this week that the situation had worsened.
Sarah Howard, who receives a package of 49 hours of support a week from Greenwich council in south-east London, said recruiting PAs was “a complete nightmare” and it had never been as bad as it is now.
She said: “I feel like I am clinging to my independence by my fingernails.”
She is having to rely on training friends to use the hoist she needs to transfer from her electric wheelchair.
At present, half of her hours are fulfilled by a care agency, and the other half by PAs she employs, but she has now been given 28 days’ notice by the agency because it no longer has the staff to provide the support she needs.
Howard, who works as access manager at Shakespeare’s Globe theatre, in London, said: “We lost hundreds of thousands of care workers due to Brexit and with Covid on top and with the appalling pay… the whole thing has just imploded.
“It’s just a constant worry and juggling act. There’s no stability. It’s a very lonely battle.
“I am relying on people doing me favours and I am trying desperately to recruit. The government have got to step up.”
She fears that if the situation does not improve, she will have to quit her job and will not be able to live independently.
She said: “I try everything I can to be as independent as possible and have a good career and help others and I just feel it’s completely out of my control.
“I am getting to the point where I just don’t know what to do next.”
She believes the solution is to allow care workers and PAs from Europe to return to the UK and ensure wages for PAs reflect the importance of the job.
She said: “I’m 51 and it feels like we are back in the 70s and 80s. I feel I am just at the bottom of the pile. You’re not treated equally. I’m not treated like an average human being.”
Solicitor Joanna Owen also told DNS that the shortage of PAs had never been as bad as it is currently.
She receives a personal health budget that essentially provides her with 24 hours a day of support and has been employing PAs for more than 30 years.
She works four days a week as legal manager at the new legal advice charity Access Social Care, which supports people with social care needs in England, and she also has an active social life.
She said: “When I have got good PAs I don’t need to worry about that side of my life.”
In previous years she was able to find a couple of suitable candidates within a week when she needed a new PA, but this time – four weeks into her search – she is struggling to find potential recruits with the skills and experience she needs.
She is trying to replace one of a team of two PAs and is having to use family members to fill in the gaps, which she said was “not ideal”.
She believes the shortage of PAs is due to the huge number of social care and other job vacancies, along with problems caused by Brexit and the pandemic, and salaries that are far too low in comparison with other jobs, as well as the way society under-values social care.
She believes Brexit is “definitely” part of the problem.
Owen said: “I lost one of my PAs because of Brexit, she went back to Poland. She was on duty when the vote happened and I could see the impact it had. It was a slap in the face for her.
“She left six or seven months after. She explained to me that she felt there was no future for her in continuing to work in the UK.”
She said her own worries about the shortage of PAs had only been increased by talking to other employers.
She said: “When I started talking to other people it made me feel more worried because I realised it is fairly widespread.
“There is so much in the media about the hundreds of thousands of vacancies in social care.
“I feels as though my grip on living independently is quite tenuous, fragile, which is obviously scary.”
Her back-up solution if she cannot find a suitable PA is to continue to ask her family to help, but she says this is “awkward” and “is not independent living”.
Even if she used an agency, she said, “they are really, really short-staffed too”.
Emma, from Cardiff, uses Dewis Centre for Independent Living to help her recruit and manage the PAs she uses for her 16-hour package of support.
She has been trying for months to find a new PA, but she says that none of the potential applicants being forwarded to her are appropriate for her needs, with many of them apparently “being forced to just apply for anything for their jobcentre quota”.
She became so desperate in February that she employed a friend of a friend, but that only lasted two weeks.
She said: “I’m left with friends trying to help out as best they can, but it’s causing them to burn out.
“There just don’t seem to be many people applying or willing to do the job of a PA, and with Brexit and Covid, numbers seem even lower.”
She has a friend who is struggling to find a PA for just three hours a week.
Now, at the age of nearly 50, she says she fears she will have to “seriously consider” moving back in with her family in Derbyshire and “giving up my independence”.
8 September 2022
Rail operator admits breaching Equality Act on access for more than a decade
The UK’s largest rail operator has admitted that it has been breaching access laws for more than 10 years across large parts of its rail network, a leaked document has revealed.
The Govia Thameslink Railway (GTR) document shows the company* has been breaching the Equality Act since 2010 because of insufficient staffing levels across its Thameslink, Southern and Great Northern rail franchise in England.
This relates to its policy of operating driver-only operated (DOO) trains to unstaffed stations, which prevents many disabled people enjoying “turn up and go” travel on an equal basis with non-disabled passengers.
It is the latest document to be obtained by the Association of British Commuters (ABC), which has repeatedly exposed the failures of the government and the rail industry to provide an accessible rail system.
The document, which probably dates from February 2021, is a copy of a communications and marketing plan drawn up by GTR to promote its 2021-22 Accessible Travel Policy, and now leaked to ABC.
GTR admits in the leaked document that its current approach of offering to pay for a taxi to take disabled passengers to the nearest accessible station if there are no staff on hand to help them access the train they wanted to catch “is frequently not a good option”.
This is because the taxi journey usually takes longer than the train, it is “generally less comfortable and there’s no toilet”, and “it’s quite often difficult to find an accessible taxi at short notice, especially in rural areas”.
The plan highlights how the company planned instead to introduce a “mobile staffing” service across 41 Great Northern, Southern and Thameslink stations that could not currently offer assistance with boarding and exiting trains at all times.
The service would send a staff member – probably by car – to the station, with a target response time of 20 minutes, to assist the disabled passenger with boarding the next train.
But GTR then warns in the document that promoting this new service would imply that the 41 stations are “currently not accessible”, and it adds: “…we have been in breach of our legal requirements since 2010”.
ABC believes that even this new service is still not a reasonable adjustment under the Equality Act, while scores of other stations will remain inaccessible to “turn up and go passengers” because of DOO trains running through unstaffed stations.
The leaked document also reveals GTR’s concerns about some of the public relations risks of its strategy, which it said included the campaigning activity of ABC and disabled activists such as Sam Jennings.
Jennings successfully sued Southern after she was left stranded on trains and station platforms more than 30 times.
She told Disability News Service (DNS) yesterday (Wednesday): “I am furious that we still have to fight for the basics in 2022, 12 years after the Equality Act allegedly tightened up the (1995) Disability Discrimination Act.
“I became a wheelchair-user in 2018 and should never have faced any of this.
“My wheelchair gives me freedom – but this also comes at a cost at being routinely disabled by inaccessibility.
“Public transport should be accessible for everyone, it is outrageous that seemingly no one is enforcing this from within government or regulatory bodies.
“I had hoped that after my legal challenge things would be fixed, but honestly the only improvement I have seen really is at Clapham Junction where they have now installed a dedicated assistance team as part of our agreement – something people were campaigning for for decades before I even became a wheelchair-user.
“I’m sick of it all. They shouldn’t be allowed to operate an inaccessible service. It’s meant to be unlawful to do so.”
In July, ABC published a draft report by the government’s accessible transport advisers, which examined the 20 stations on the Thameslink service from London Blackfriars to Sutton in south London and found that the current staffing levels on the route were “completely inadequate to deliver an accessible railway, and to ensure disabled people can use train services on the same terms as other passengers”.
And last month, campaigners wrote to the Equality and Human Rights Commission (EHRC) to call for it take “urgent action” to prevent an “escalating human rights crisis” for disabled passengers, caused by staffing issues on Britain’s rail system.
They said reports that the government planned mass ticket office closures meant this could be the last chance to act on rail accessibility, which they believed was in a “state of national emergency”.
EHRC warned three years ago that the move towards running DOO trains, and an increase in unstaffed stations, as well as the need for many disabled rail passengers to book assistance before their journeys, could be breaching the Equality Act.
An EHRC spokesperson said yesterday that the commission was still considering the letter sent last month, and that it would examine the leaked document.
GTR claimed this week that the extract from the leaked document – which DNS has seen –does not correctly represent its position.
It argued that offering disabled passengers a free accessible taxi to the nearest accessible station meant it had not been breaching the Equality Act, even though the leaked document makes it clear that this is “frequently not a good option”.
It said that 27 stations were currently part of its mobile staffing service across the Southern, Thameslink and Great Northern franchise.
But GTR declined to say how many stations will still be breaching the Equality Act, even after the service is available across the 41 stations mentioned in the leaked document.
A GTR spokesperson said in a statement: “This extract taken from an internal working document unfortunately does not represent our position correctly.
“We do comply with our reasonable adjustment duty under the Equality Act.
“For example, we offer passengers alternative transport to their nearest accessible station and we have launched mobile assistance teams.
“We remain firmly committed to making the railway more accessible to all.”
The Department for Transport (DfT) had not said by noon today (Thursday) if it accepted that GTR had been in breach of the Equality Act since 2010, or what action it would take to end the repeated breaches.
But a DfT spokesperson said: “Train operating companies have a duty to make railways accessible and effectively reduce the barriers for disabled passengers.”
The Office of Rail and Road (ORR), which is responsible for approving rail companies’ Accessible Travel Policies, had failed by noon today to explain why it appears to have condoned unlawful GTR policies for more than a decade.
Although it occasionally reminds train operating companies that they are subject to the Equality Act, it suggested this week that it was not responsible for enforcing compliance with the act.
This is despite EHRC stating clearly in its response to an ORR consultation in 2019 that public bodies have “obligations under the Human Rights Act 1998 and the Equality Act 2010” and that regulators such as ORR have “a particular responsibility to help ensure that their sectors meet these obligations”.
An ORR spokesperson said: “We pay particular attention to plans for providing assistance at unstaffed or part-staffed stations that may be serviced by trains where there will be no second member of staff on board.
“We engage with GTR on a regular basis to monitor the provision of accessible travel for their passengers.
“We hold them to account against the commitments set out in their Accessible Travel Policy, including their commitment to strengthen the existing provision at unstaffed or part-staffed stations through a trial to extend the use of mobile assistance teams.
“The trial is ongoing, and we will continue to monitor GTR’s rollout to further stations, the training they provide for staff and their approach to assessing the trial’s effectiveness.”
*GTR was formed in 2014, but the companies that became GTR were operating rail services in these areas before then
8 September 2022
Funding scheme set to help small user-led groups survive with pain-free grants
By Tom McDonough
A new funding programme launched by a disabled people’s organisation aims to help small user-led mental health groups in England continue providing “life-saving” support in the heart of the cost-of-living crisis.
National Survivor User Network (NSUN), a network of groups and people with experience of mental distress, says its Sustaining Spaces Fund (SSF) will offer user-led mental health groups a pain-free way of applying for small grants.
Its launch comes at a time of crisis for user-led mental health groups, with more than 200 of NSUN’s member organisations having closed down between 2019 and 2021, with their problems now worsened by the cost-of-living crisis.
NSUN says that groups led by people with mental health difficulties play a vital role supporting people in the bleakest and most difficult moments of their lives, and yet these groups are experiencing a crisis of their own.
It says: “Across the country, they are disappearing through lack of funding, lack of understanding and lack of support from both the public and from funders and the public sector.”
Ruairi White, project manager at NSUN, said the network had “tried to make the application process as simple and straightforward as possible – proportionate to the relatively small amount of funding on offer (grants of £500-£1,000).
“We know user-led mental health groups often find funding applications hard: they are time-consuming, full of jargon, and often require specialist knowledge on fundraising.”
He said the fund will instead set groups free from the burdensome application procedures and requirements of traditional grant-giving bodies.
White said: “It does not, for example, require groups to have extensive financial data or bank accounts and nor does it compel them to carry out ‘new and innovative’ projects that divert them away from their core – and often niche – work.”
He added: “User-led groups do not have a lot of capacity – many are run by a small number of volunteers and there is often no staff member whose sole focus is fundraising.
“This can make applying for traditional funding an arduous and daunting task.”
According to White, the Covid-19 emergency grants have not helped network members over the longer term and have even caused some to be more stretched than ever after enticing them to expand their activities in response to funding opportunities that were then discontinued.
Suicide Crisis, an award-winning centre providing 24/7 face-to-face and phone support in Gloucestershire to people at risk of taking their own lives, is one NSUN member challenged by the current funding system.
Joy Hibbins, founder and chief executive of Suicide Crisis, said: “Some of the most innovative and impactful work in mental health is being created and carried out by user-led organisations and yet user-groups often struggle to attract funding.
“There are often many barriers to us accessing funding from traditional funding providers.”
She added: “It’s particularly vital and relevant that the NSUN grants are available now at a time of increased need for our services because of the cost-of-living crisis.
“This will increase people’s suffering and vulnerability this autumn and winter and we are already seeing more people in crisis.”
While Suicide Crisis has managed to continue operating and remain independent of statutory funders, many other mental health user groups have folded.
Hearts and Minds, a user-led group dedicated to supporting younger people with mental distress in south-west London, is one of the grassroots groups that has had to close.
After four years of working with isolated and marginalised teenagers and young adults seeking an alternative to NHS mental health care, the group shut its doors for the last time in January this year owing to a lack of funds.
The group’s mid-2018 impact report quoted one 25-year-old man saying: “It’s provided me with a safe space where I feel like I can just be myself with my struggles.
“I’m a lot more confident. Out of my head and happier.”
The loss of such groups leaves some areas without a community-based alternative to NHS mental health care.
White said: “There is a mutuality and genuine compassion and understanding there [in user-led groups] that can be absent from the statutory services, where power imbalances between professionals and ‘service users’ are ever-present and the risk of coercion is very real.”
Hibbins also emphasised the importance of user-led groups’ independence and distinctiveness from statutory services.
She said many clients at Suicide Crisis are keen to know the service is not funded, controlled or influenced by the state in any way.
John, who accessed face-to-face appointments at Suicide Crisis and benefitted from its flexible and individualised support, said: “Suicide Crisis saved my life. There’s no two ways about it.
“They were always there for me – 24 hours a day. I am still here because of the help, support and encouragement that I have received from them.”
The £19,700 pot of money being distributed through the new fund was given to NSUN by Mind via its PeerFest event, an annual celebration of peer support.
The Sustaining Spaces Fund opened on 22 August and the deadline for applications is 5pm on Friday 16 September 2022
This news story is part of an ongoing Disability News Service series that draws attention to the vital work being carried out by the UK’s disabled people’s organisations
8 September 2022
Other disability-related stories covered by mainstream media this week
Households which include disabled people are particularly likely to have recently struggled to keep their home warm, have relied on friends and family for financial help, and had to make cutbacks on meals, showers or baths as living costs rise, research suggests. Half of households (48 per cent) containing disabled people have struggled to keep their home warm and comfortable at some point this year, compared with 30 per cent of households without any disabled members, a charitable foundation has found. And half (48 per cent) have reduced the use of their cooker or oven, compared with 30 per cent of households with no disabled members: https://www.independent.co.uk/news/uk/households-yougov-b2161359.html
A council in Somerset has voted to declare a “learning disability emergency”. The decision follows a 2019 report which showed a lack of improvements in outcomes for people with learning difficulties. Cllr Mark Blaker, who brought the motion to Somerset West and Taunton Council, said it was “a big social issue that’s being ignored”: https://www.bbc.co.uk/news/uk-england-somerset-62807951
8 September 2022
News provided by John Pring at www.disabilitynewsservice.com
