Here is our group statement to the MPs who scrutinise the DWP, for their inquiry into the assessment of disability benefits. The last time they did this was in 2017-2018.
We want to share it now as we have been supporting bereaved relatives interviewed in last night’s Channel 4 Dispatches: Truth about disability benefits. The terrible events told are similar to how sick and disabled claimants are still treated, including women and girls who have come to us for support and help. We wanted to bring our experiences to the MPs’ Committee. Many have escaped a tragedy, winning benefit rights with our collective self-help, casework and peer support, but still went through an ordeal.
Individual claimants can still contribute your experiences to the Committee here, until mid-February 2022.
Easy Read survey here.
Work and Pensions Select Committee inquiry: Health assessments for benefits
- How DWP could improve the quality of its assessments;
- Lessons from the pandemic, including whether changes DWP made to the assessment processes then should continue;
- How DWP could make applying for benefits more straightforward for claimants.
Submission by WinVisible (women with visible & invisible disabilities)
We are a grassroots multi-racial organisation with a UK-wide network, enabling disabled women of different backgrounds and situations to have a voice. On benefits, we provide self-help information, peer support, advocacy and campaigning which has helped many disabled women win or keep hold of our benefit rights (see our blog). Immigration status should not be used to deny benefits – abolish No Recourse to Public Funds and reinstate benefit rights and the right to work for all.
We want to raise some experiences of women and teenagers who have come to us for help, and our experience generally with the assessments.
The inquiry questions – we have answered the questions relevant to us.
Suitability of assessments
1. How could DWP improve the quality of assessments for health-related benefits?
The current assessment system is discredited. The Work Capability Assessment (WCA) and Personal Independence Payments (PIP) test are designed to minimise needs and exclude people from benefit. These must be scrapped and replaced with supportive benefits enabling us to live in dignity.
Sick and disabled people are subjected to enormous intrusion into our lives to justify why we should get benefits and homecare (and our PIP daily living benefit is routinely taken by Councils in homecare charges). We are expected to answer questions about our toilet needs as part of both the WCA and PIP test. If we skip that, we can lose valuable points. We don’t know who is going to read our forms, which are scanned into the system at a “mail opening unit”. Women have to disclose about periods and gynaecological issues. Location trackers can be placed on our Motability cars.
Every day, claimants are cut off and mistreated by a brutal and automated system which is killing people. Elaine Morrall, Moira Drury, Errol Graham, Philippa Day, Jodey Whiting, are among thousands who died after being cut off for “failure to attend” disability benefit assessments. Bereaved relatives are having to go to court to fight for justice.
There is systemic sexism, racism and disability discrimination in the benefits system.
We are among those supporting Joy Dove, bereaved mother of Jodey Whiting. On her “good cause” form, Jodey Whiting explained that she had missed seeing the WCA appointment letter because she had pneumonia and was undergoing hospital treatment for a cyst on the brain. She wanted the DWP to contact her GP. But DWP decision-makers upheld the cut-off, saying she did not have good cause because she did not send proof from a medical professional with her form. Their default position was to treat her with suspicion.
We supported a refugee woman who survived genocide and being shot, who needed to be spared the WCA interview where you have to go over what happened to you. The assessor company, the Centre for Health and Disability Assessments (CHDA) — Maximus — dismissed as insufficient, a letter from the clinical physiotherapist referring her to the Pain Clinic and verifying shrapnel in her body from surviving a bomb blast. An in-depth report on her trauma from the PTSD lead doctor at the local hospital was similarly discounted. The doctor complained to Maximus that she is called as an expert witness in court cases and her professional opinion had never been dismissed before. After intensive advocacy, we were able to secure exemption from interview.
Elaine Morrall’s four children were left without a mother when she was too ill to attend a compulsory work-focussed appointment, was cut off and subsequently died of cold at home, aged 38. Her mother Linda said Elaine had been in and out of hospital with eating disorders and was cut off benefit numerous times. She could only afford to put the heating on when the children were home from school. At the time she died, the Council had started eviction proceedings as the family’s Housing Benefit had been stopped when her ESA/UC was cut. Disabled single mothers especially should never be cut off benefit, not least to protect the children.
Disabled mothers and disabled family carers are entitled to disability support. We are discriminated against on the basis that looking after children means we must be fit for work, or our caring disproves that we have support needs ourselves. Our Disabled Mothers’ Rights Campaign is pressing for support for disabled mothers from Councils and against widespread institutional discrimination.
Targets for refusal. Hand in glove with the DWP agenda of cutting overall spending on benefits — what the Green Paper calls “affordability of support” — the assessor companies profit from our ordeals, clearly working to targets for refusal, as well as time targets for completion of assessments which pressure us to comply even if we are in distress and do not allow us enough time to get medical evidence to support our claims – especially now that GPs’ surgeries can be unresponsive, which is then used against us.
The assessor companies pressure women and girls to undergo interviews when this is too stressful and many want a paper-based assessment. Medical evidence by doctors much more qualified than the assessor (who can be a physio or ambulance man) is often dismissed. Often, assessors only make a token effort to reach doctors and practitioners for their opinion to accompany the paper assessment. Hence they often don’t reach them and make decisions based on ignorance and bias.
Women’s own descriptions of our needs are routinely dismissed, even if verified by a medical professional. But often the GP factual reports are very skimpy. One FRR2 report to CHDA was fourteen words. Assessor companies say they are not allowed to commission more than one GP report per assessment, which is unreasonable CHDA told a woman on Universal Credit to get more evidence herself, but the GP surgery refused, saying they had already done a report and weren’t providing letters requested by patients, due to the pandemic. Women are also made to pay charges for letters which we can’t afford. These letters often don’t usefully describe needs but simply provide diagnoses which are already available in medical records.
We don’t know whether the DWP has in practice abolished targets for refusal of mandatory reconsiderations. They came under fire from the Committee’s last inquiry in 2017 for having a target of 80% refusals. But our experience is very much that they are still operated.
a. Have you seen any specific improvements in the process since the Committee last reported on PIP and ESA assessments, in 2018?
Our experience is that things have got worse since 2018. The DWP should have oversight and intervene where someone has been treated badly or wrongly by an assessor company.. But they don’t take action to remedy problems unless they are put under pressure by organisations and MPs for constituents or threatened with judicial review. They insist that women and girls “go through the process”, and if claimants ask the DWP for help, the DWP refers them back to the assessor. For example, the Universal Credit helpline and job coaches referred a disabled woman back to CHDA multiple times. This resulted in unreasonable delay of over a year, depriving her of UC LCWRA (Limited capability for work-related activity) disability element of over £4,000.
In 2017, 3,000 people sent evidence to the Committee inquiry into PIP and ESA about their bad experiences. From this unprecedented outpouring, the Committee published two reports, one entirely of claimant experiences. All three assessor companies were called to answer questions from the MPs.
Capita was in front of the Committee and clearly knew the issues, as well as being confronted with them by witnesses and MPs. But Capita has carried on in the same way. They have now had to pay compensation to the family of Philippa Day – for her son’s loss of his mother due to their gross negligence and brutality. From the Guardian report:
“In tears, [Philippa] Day had told the official: “I’ve been waiting for six months now. I’m literally starving, I can’t survive for much longer.” She added: “[I’m in] £5,000 debt. Nothing to eat. I’ve lost all my [benefit] premiums … I cannot survive … without any money. I need something to live for.”
After her benefits were finally reinstated, Day – who was agoraphobic – became increasingly terrified and anxious as DWP officials insisted she be retested at a face-to-face meeting at a benefits assessment centre or face losing her benefits. Her sister [Imogen Day] told the inquest this was the “straw that broke the camel’s back”.
In a statement about the settlement (3 November 2021), Imogen Day, Philippa’s sister said:
“Our family has always maintained that my sister’s treatment by Capita, on behalf of the DWP, directly impacted her mental state and in the end is the reason for her death. Capita’s wall of bureaucracy, with no consideration for Philippa’s mental state, exacerbated her despair at her debt and poverty. She was met with cold, uncaring call operators who would not listen to her cries for help.”
We bring to your attention that similar mistreatment is still happening all the time to women with mental distress and other severe disabilities, across all three assessor companies which are working to refusal targets and time targets, and by the DWP.
This is our daily experience supporting women and teenage girls up against the brutal disability benefits system, who describe us as a “lifeline”. The government’s announcement of ending needless reassessments of people with long-term conditions does not seem to have been implemented for anyone whom we have supported over some years and reassessment cycles.
More examples from our casework:
Ms A, who has PTSD from abuse, agoraphobia and serious physical health conditions, has suffered repeated stressful reassessments and being wrongly cut off multiple times.
ESA. Her ESA reassessment was under way in March 2019. But she was cut off after an assessor came to her front door even after the visit had been officially cancelled and replaced by paper-based assessment. In November 2019, she received another notice of a reassessment home visit, which caused her mental health to spiral down. We got the home visit cancelled once again – but she was then sent a BF223 “failure to attend” form threatening to cut her off. Although CHDA had emailed us that the visit was officially cancelled, and so no health professional actually went to the flat. After a battle, we got Ms A’s ESA reinstated and raised a complaint with CHDA, who stated they are allowed to issue the BF223 on behalf of the DWP.
PIP. In March 2021, Ms A was terrified when she received the DWP letter, and could not open the envelope. Some weeks later, she mustered enough energy to call us, and we provided remote support. It was a PIP continuation form and the deadline to get it in was 8 June 2021. In mid-May we sent representations to the DWP in place of the form, and spoke to a DWP case manager who accepted our report and sent it to IAS for assessment. However, Ms A then received a DWP letter dated 11 June, saying that her PIP was stopped from 10 June for not sending the form back.
DWP PIP staff told us that although our report was passed on to Independent Assessment Services (IAS) – Atos — and was received by them in time, the DWP case manager failed to log this on the system and didn’t issue a note about the arrangement. Cardiff Service Centre told us they would put the PIP payments back on, and stated they would accept her “good cause” for the delay not receiving the form. We explained that there hadn’t been a delay, our evidence was accepted weeks before the deadline. They also said they could only accept our evidence with an original signature from the claimant – Ms A has agoraphobia and this was during lockdown. No mental health marker was put on her file.
Knock-on effects: The PIP stop also caused Ms A’s ESA to be stopped again in June 2021. ESA staff explained that because Ms A gets severe disability premium tied to PIP, an ‘error message’ appeared on their ESA system and that’s why the payments stopped or they stopped the payments. When your ESA stops, the Council stops your Housing Benefit and Council Tax help which are tied to ESA.
Ms A comments: “Everything is deliberately made harder for those far from able . . . the DWP will continue to judge claimants as charlatans, guilty until proven innocent and entirely expendable. Your patience, kindness, tolerance and hard work are life-saving. Truly.”
Ms B was sent a Health Assessment Advisory Service (HAAS) Maximus letter saying she had to attend a face-to-face WCA assessment at an assessment centre and if she chooses not to (our emphasis), her benefit may be affected. This seemed to be a response six months after sending in-depth evidence and asking for a paper-based assessment. We complained that the HAAS letter to attend a face-to-face appointment was issued during official suspension of face-to-face assessments by the DWP. In October 2020, CHDA admitted that the appointment was “not appropriate” at that time but also that the GP surgery had not replied both times an ESA113 form was sent to them. Why was Ms B punished for this?
Ms C is aged 17 and her mother applied for PIP on her behalf after it was suggested by Great Ormond St Hospital. She was asked to travel to a face-to-face assessment by IAS despite her PTSD, physical disabilities and having had COVID three times due to low immunity. IAS eventually agreed to a paper-based assessment in November 2021. However, the DWP decision-maker (DM) seemed to seize on minor improvements against a background of Ms C being severely incapacitated by her immune system illness and after being hospitalised. She was refused PIP, the DM scoring her only a handful of points, saying there was no evidence of need. The doctors treating Ms C are horrified and said they had not been contacted for their opinion. Ms C’s mother has put in for mandatory reconsideration and meanwhile is skipping meals and using her own PIP to pay for her daughter’s disability expenses. She says: “. . . the whole year that passed after an application was made has been a nightmare for us”.
Jane, a severely disabled woman in the East Midlands was cut off benefit for “failure to attend” a home visit. The appointment times allocated by Capita were before she could get herself ready in the morning. She told us that the CAB said nothing could be done and made her feel bad that it was her own fault. She had gone over the age to make a fresh PIP claim, and Attendance Allowance for older people has no mobility component. She lost the first-tier tribunal which upheld the “failure to attend”, which she could not go to as it was in another town and she is virtually housebound. With help from the CPAG Upper Tribunal Project, we made a disability case about her ill-health to the Upper Tribunal judge as to why her appeal should be heard late. She was granted £10,500 arrears and ongoing PIP benefit.
Rita is a disabled Asian woman with cancer in Cambridgeshire, she found WinVisible online after a bad experience with advice locally. She had been similarly cut off by the DWP after problems with Capita, and due to illness she struggled to submit her appeal papers. These arrived to the tribunal one day after deadline, and the clerk said they would have to consider whether to accept her appeal. We couldn’t tolerate uncertainty or her waiting ages for appeal, and we contacted the DWP directly. She got £11,500 in PIP and severe disability premium payments. She said: “While some of the benefits staff were kind, most couldn’t care less. I was close to a complete breakdown, and if it weren’t for [WinVisible’s] help, I don’t know how I would have survived.” Rita was cruelly cut off when she needed benefits the most. We don’t know whether racism was a factor as well as sexism and disability discrimination, as officials often assume women are exaggerating illnesses. Being labelled unco-operative and cut off for ‘failure to attend’ interviews when we are ill, in mental distress or in hospital treatment is a huge problem.
S had to give up waged work. With an invisible disability, her interview for disability addition to Universal Credit was deemed ‘inconclusive’ and she was told she had to wait until face-to-face interviews restarted. She was bounced between DWP Universal Credit, the assessors Maximus, and her GP who declined to provide more medical evidence. We used welfare rights guidance to challenge unreasonable delay and she won £4,000 arrears. She said: “Thankfully after what felt like a never-ending nightmare, I have finally got what I had been entitled to. I feel so relieved that I can now afford the diet that I should have been on, I can focus on my health and my children without Jobcentre breathing down my neck about being sanctioned, me having to keep asking for sick notes from my GP and them pushing me to go back to work. I would like to continue with WinVisible support group to help others in any way that I can from my own personal experiences.”
*Names have been changed or anonymised.
2. Are there any international examples of good practice that the Department could draw on to improve the application and assessment processes for health-related benefits?
There may well be more humane practices in other countries, but there is already an outpouring of clear evidence showing exactly what the gross injustices are and where the system can be immediately improved.
As regards other nations in the UK, we know some changes are being made in Scotland, but also know that Inclusion Scotland has criticisms which we want to look into.
3. Do the descriptors for PIP accurately assess functional impairment? If not, how should they be changed?
No. Ms D writes:
I heard from DWP on [May 2021] (they now send out white envelopes!) and pleased to inform you that I have been awarded enhanced for both elements! I still feel in a state of shock about it . . . . I have attached my results. It does go to show how much they don’t know about Autism as I was scored 0 for communication?! This area is one of my biggest challenges and was the highest score in my Autism assessment. I don’t know any Autistic that is problem free.
4. Do the descriptors for ESA accurately assess claimants’ ability to work? If not, how should they be changed?
No – see above.
5. DLA (for children under the age of 16) and Attendance Allowance usually use paper-based rather than face-to-face assessments. How well is this working?
The rule that the child must need ‘substantially’ more care, attention or supervision than other children of the same age who do not have a disability or health condition, can be wrongly and harshly applied, resulting in disabled children being refused benefit. This has a knock-on effect of the mother losing out on additional Child Tax Credits or the UC disabled child addition.
a. Before PIP replaced DLA for adults, DLA was also assessed using a paper-based system. What were the benefits and drawbacks of this approach?
Under DLA, the claimant’s own statement about their situation had more weight, and the opinion of their own GP was more respected. Paper-based assessments avoid the stress of interviews, which have even led to suicides when refused.
Forms are harder for people who struggle with reading and writing, including people with learning disabilities, deaf people and other people whose first language is not English. Paper-based assessments can depend on being able to get appropriate written medical evidence, which is hard or expensive to get.
Claimants should be able to choose how to provide information for their claim and be treated fairly so any pitfalls of that method are not used against them.
6. How practical would it be for DWP’s decision makers to rely on clinician input, without a separate assessment, to make decisions on benefit entitlement? What are the benefits and the drawbacks of such an approach?
Each claimant must have say over the information which is submitted for their claim, it must not happen over our heads, and people are entitled to dispute how they have been diagnosed by a clinician. We are opposed to blanket sharing of confidential medical information between agencies. Most doctors are not geared to describing needs, only diagnoses, but the mostly unqualified/underqualified and biased DWP staff and assessors and the current WCA and PIP tests refuse to acknowledge that substantial needs must arise from a particular condition.
As GPs are pooled within a surgery, the GP who fills in a report is often not the one who knows the claimant best. And many more senior doctors and psychologists assert that it is not their job to deal with the benefits system. And many are prejudiced against women with invisible disabilities, certain conditions and/or are racist or exercise forced contraception and sterilisation. Some women don’t see doctors, because our disability is permanent, e.g. cerebral palsy, and there is no treatment, or our previous traumatic experiences as children mean we avoid doctors and hospitals as adults.
7. Appeals data shows that, for some health-related benefits, up to 76% of tribunals find in favour of the claimant. Why is that?
Shockingly, the tribunal can be the first time that claims are considered properly, all the evidence is looked at and where the person has a chance to make their case.
But first-tier tribunals have also been discriminatory to women unfairly cut off for “failure to attend”.
- What could DWP change earlier in the process to ensure that fewer cases go to appeal?
8. Is there a case for combining the assessment processes for different benefits? If not, how else could the Department streamline the application processes for people claiming more than one benefit (eg. PIP and ESA)?
In the current hostile environment, we are against the merger of assessments across different benefits which will leave claimants entirely destitute and deprived. Disabled people now may at least get the other disability benefit if denied either ESA/UC disability or PIP, which happened to many women contacting us.
In a combined process, incorrect or bad-quality information from one benefit application would influence decisions on the other. There must be no expansion of private assessor companies’ powers to “decide” our entitlements. We are opposed to the merger currently being piloted by the DWP with an Australian company.
9. What are your views on the Department’s “Health Transformation Programme”? What changes would you like to see under the programme?
In the current hostile environment, we are against a “single platform” and more power handed to the profit-driven assessor companies. And our response to the DWP Green Paper is here.
- (For people claiming) Would you like to be able to manage your benefit claim online?
Online is easier for a sector of claimants but excludes a substantial number of others. Claimants still need to speak to staff who can help and resolve problems, even if doing an online claim.
- What would be the benefits and drawbacks of DWP bringing assessments “in house”, rather than contracting them to external organisations (Capita, Atos and Maximus)? In particular, would this help to increase trust in the process?
There is no place for profiteers in the benefits system. There should be an accountable public service ethos in the benefits system, but the DWP itself must also observe this standard instead of treating claimants without compassion or taking responsibility.
The impact of the pandemic
We saw that PIP claims plummeted during the pandemic, for various reasons, including that DWP staff were transferred off PIP to deal with the surge in Universal Credit claims. And in relation to UC, we’re sure that many people, like Ms S above, were denied disability addition due to an “inconclusive” WCA phone interview and being told by Maximus to wait for face-to-face interviews to come back.
We dread that thousands of sick and disabled people have been cut off benefits or hit by delays, and are suffering and dying as a consequence, due to lack of DWP staff or GPs not replying to provide medical evidence.
10. What lessons should the Department learn from the way that it handled claims for health-related benefit claims during the pandemic: for example, relying to a greater extent on paper-based assessments, or using remote/telephone assessments?
a. Is there a case for making some of the changes permanent?
Yes, people should be able to choose whichever way suits them: paper assessment, phone or face-to-face, as well as accepting emails from people unable to go to the post office, and email from visually-impaired people for whom paper forms are not accessible. But all the ways have pitfalls (some GPs and psychologists won’t provide opinions for benefits or don’t know the claimant).
The basic problems are the unfairness of the tests, default suspicion of claimants and the whole system being stacked against fairness. Claimants should continue to get their benefits throughout the whole process of a dispute between the claimant and the DWP and its assessors.
We heard that the DWP wanted to test out telephone interviews to see whether it was an ‘advantage’ for them, that is, use of phone interviews led to more people being refused compared to face-to-face interviews.
The rest of the questions, we didn’t answer or only very briefly.
11. Most assessments for Industrial Injuries Disablement Benefit were suspended during the pandemic. What has been the impact on people trying to claim IIDB?
a. Some IIDB claimants will receive a lower award than they might have, due to the suspension of assessments, because IIDB awards are linked to age. Should the Department compensate these claimants? How?
b. What lessons could the Department learn for how it deals with these claims in future, in the event of further disruption to normal services?
Claims should be extended until they can be dealt with and not cut off.
12. DWP believes that applications for some benefits dropped sharply at the start of the pandemic because claimants weren’t able to access support (for example, from third sector organisations) to complete their applications. What are the implications of this for how the Department ensures people are able to access health-related benefits consistently?
a. How can the Department best help the third sector to support claimants in their applications?
The impact of assessment/application on claimants
13. DWP recently published research on the impact of applying for PIP or ESA on claimants’ mental and physical health. What would be the best way of addressing this?
Waits for assessments
14. What could the Department to do to shorten waits for health-related benefit assessments—especially for ESA/UC?
a. How effectively does the “assessment rate” for ESA cover disabled peoples’ living costs while they wait for an assessment? Is there a case for introducing an assessment rate for other health-related benefits?
Sick and disabled people should get their disability costs met straight away at the time of need. The ESA assessment rate is a pittance. We opposed the ESA WRAG £30 cut.
Health assessments in the devolved administrations
15. The Scottish Government intends to introduce its own assessment process for the Adult Disability Payment, which will replace PIP in Scotland from 2022. What could DWP learn from the approach of the Scottish Government?
Please also seek advice from Inclusion Scotland.
a. PIP started rolling out in Northern Ireland in 2016. Is there evidence that the Department learned from the experience of rolling out PIP in the rest of the UK?
16. How effectively does DWP work with stakeholders—including disabled people—to develop policy and monitor operational concerns about health-related benefits?
a. What steps could the Department take to improve its engagement with stakeholders?