UK: Disability benefits (UC, ESA and PIP) - news and updates 2023 (including government plans to scrap the work capability assessment)

Merged thread

MEA report: Budget 2023 Update: What Does It Mean For M.E.?

March 16, 2023
ME Association Comment

The biggest news coming out of the Budget announcements for disabled people is the confirmation that the Government intends to abolish the Work Capability Assessment (WCA). Other announcements relate to a new voluntary employment scheme, named “Universal Support”; aimed at encouraging disabled people to seek work with potential support of up to £4,000 per individual available; and a £400 million scheme to support those with mental and physical problems to improve their health.

In contrast to this help, sanctions are to be applied “more effectively” for those who are deemed to be capable of work but “choose” not to seek it. Other issues that may be relevant to those with M.E. are changes to minimum expectations for job seekers, the extension of the Energy Support Scheme, the expansion of childcare provisions and extra help for over-50s to retrain.

Ella Smith, Welfare Rights Adviser, The ME Association

full report: https://meassociation.org.uk/2023/03/budget-2023-update-what-does-it-mean-for-m-e/?

 

PIP can be applied for in a new way as DWP announces important change

DWP trials new PIP digital application process | Personal Finance | Finance | Express.co.uk

 

Disability News Service article dd 30.3.2023 covers many excellent points.

https://www.disabilitynewsservice.c...ents-benefit-reforms-are-not-fit-for-purpose/

It covers the evidence given to Women & Equalities Committee on 29.3.23

https://www.parliamentlive.tv/Event/Index/3e240585-9c37-4e28-9946-e75379ad13fa

Fran Springfield (co chair of Chronic Illness Inclusion), in particular,

“I don’t think there has been any input into this from disabled people and this is going to make life much more difficult for those of us with invisible disabilities.

“We have to find a system that is compassionate and encourages people if they are well enough to go into work but accept that there are some people who will never be well enough to go into work, and those people deserve support and help.”

 

The whole thing's barking. For a start, I bet there are a good many people who would qualify for PIP on a fair assessment but don't currently get it, either because they can't face the application process or they didn't have support to appeal when an initial application was turned down. This is likely to force them into applying again, and some of them will be successful. So we'll end up with another reform that, from the government's point of view, was designed to cut the costs of benefits bill and ended up increasing them.

Still, the reforms are a good way off and won't even affect current claimants in the foreseeable future, so there's time for the whole thing to be changed again before it's fully rolled out.

 

^ This.

But also: there’s never been greater need for an ME biomarker, to protect us from inevitable squeezes on claimants with invisible conditions.

 

Diagnosis has not served as a substantial weighting factor in awarding UK disability/sickness benefits - the focus even back in the days of the Invalidity Pension was on degree of incapacity as identified by test/assessment, although support of GP and or Specialist did have some weight. For example having cancer was not in itself a basis for an award, only the degree to which the cancer was debilitating at a specified point, although by contrast the Industrial Diseases Pension (now IIDB )was driven by medical opinion.

Every benefit change in the last forty years has involved new 'gatekeeping' measures that are fundamentally about physical and mental performance, and the role of medical evidence has been progressively reduced. We might say that the importance of bio has been diminished while psycho and social have been elevated.

Having a more objective ME/CFS diagnosis would obviously add some weight to a benefit application but issues of mild>moderate>severe would still be in the gatekeeper's jurisdiction.

 

It may not be a formally substantial weighting factor but it informs the prejudices and assumptions of GPs, assessors and policymakers, which in turn have been given more scope for discretion by the policy changes you mention. It’s a vital part of the realpolitik underlying fitness-to-work judgements.

You’re relying too much on the letter of the law, which is all very well until it conflicts with headline-chasing, Treasury-friendly policy agendas. It’s like trying to predict HMG treatment of asylum seekers by perusing the 1951 Refugee Convention.

 

theoretically yes, its not the diagnosis but the assessment of function. But in practice the dx is at the heart of the assessors decision. If they dont believe ME can cause the difficutlies we have then they simply discount them.

My initial PIP assessment was littered with 'claimant says _______ but this is not consistent with a CFS dx'. It was consistent with severe ME but since the assessor clearly didnt believe it could cause anything but mild fatigue (because it was mental health dx), they couldnt accept the difficulties it causes me & gave me woefully less points than i should have received, & from the assessors report it seems i would have been given, had they simply believed it was organic.

So i'd agree that a biomarker a test result proving there is actually a biological abnormality, would make a great deal of difference.

Its supposed to be all about your functional capacity, but an assessment of that given over 30mins, is always going to feature the assessor's pre-conceived ideas & prejudices which any testimony or evidence will be filtered through. Its about whether the assessor believes that X condition can make you as ill as you say you are, & without a biomarker that leaves us vulnerable in the extreme.

 

It would be an advance if the decision makers (the DWP employees who are charged with collating the evidence and rendering or refusing an award) were to accord to the letter of the law, it would reduce the number of unnecessary appeals - currently about 1 in 20 decisions are appealed of which 60% are found in the claimants favour. The 1 in 20 appealed is claimed by the Government as 95% success but no one knows how many of the 19 out 20 involve refusals or lower payments where the claimant doesn't have the mental, physical or social resources to make an appeal.

There's some evidence re: physical/versus psychological, which is where the 'non visible' disabilities arise, though that really means mental health: Discrediting experiences: outcomes of eligibility assessments for claimants with psychiatric compared with non-psychiatric conditions transferring to personal independence payments in England However that study still shows that some 7k claimants per year with musculoskeletal conditions were being refused benefit on review - at least a proportion of those will have medical substantive medical evidence.

It shouldn't be underestimated how ingrained the bureaucratic process of decision making is: Decision makers’ guide: staff guide and Decision makers’ guide: Vol 1: Decision making and appeals: staff guide - there is specific guidance for individual conditions but as far as I can tell there's nothing new for ME/CFS since 2007: New DPW medical guidance on ME/CFS (DWPv10) but the sections on CBT and GET are now subject to NICE update.

A more secure diagnosis may make benefits claims easier for people with ME/CFS but unless the system changes it won't impact dramatically because the system isn't about sympathetic appreciation of disease, it's about judging capacity and that happens in the opaque decision maker office.

 

DWP PIP warning as thousands of benefit claimants have their payments stopped

Thousands have lost their disability benefit because of issues over returning their review forms, the Department of Work and Pensions (DWP) has revealed.

As our colleagues at Chronicle Live report, Up to 42,000 claimants had their Personal Independence Payment (PIP) award stopped in 2021, an increase of almost 300 per cent - in just two years. Elsewhere, 25,400 claims were disallowed in 2020.

The figures come from Tom Pursglove, DWP minister for disabled people, in response to a written parliamentary question. These stats make reference to those people who allegedly failed to return their AR1 PIP review form.

It is unknown whether non-return includes forms that were returned late. It is also not clear how many people challenged the decision.

Mr Pursglove's response shows that the number of claims disallowed each year for non-return of the AR1 review form have increased steadily year on year since 2017, when there were 7,500 claims disallowed. Benefits rights website Benefits and Work said it was concerned that the number of claimants allegedly failing to return their forms seemed to be increasing at an extraordinary rate. A spokesperson said: "At Benefits and Work our concern is that the number of claimants allegedly failing to return their forms seems to be far outstripping any rises in awards that had taken place at the time. We know that the DWP’s post handling and call management is dire and getting ever worse. It seems very possible that many disallowed claimants are returning their forms on time, but the DWP is either losing them or taking far too long before recording that they have been received.

More at link: https://www.examinerlive.co.uk/news/uk-world-news/dwp-pip-warning-thousands-benefit-26332150

 

The DWP decision makers a1most a1ways just give an award based on the contracted company's hea1th professiona1's report. The pressure to down grade the points seems to be taken at the 1atter's 1eve1. My 1atest PIP medica1 report shows this. I can see that the written statements don't correspond with the points 'recommended' on the report (i.e. it interna11y contradicts itse1f). I reca11 the (actua11y 1ove1y) nurse I had visit me (in the presence of an independent advocate and a Rethink support worker) to1d me what she was going to recommend in each category. I suspect her manager went through her draft report and reduced the points because they were too 'generous'. Tota11y unnecessary as I scored way above the 12 point thresho1d anyway. It's as if these contracted companies seem to think they must reduce the scores in their medica1 report to the very minimum they can 'get away with'.

It made no difference to my award, but it does mean the report/scores aren't an accurate ref1ection of my 1imitations, so for examp1e, it wou1dn't show the true extent of these if I were to submit it as evidence for a socia1 care assessment. That said, previous1y (when I had one once upon a time) my autism socia1 worker to1d me the county don't even have to regard the PIP evidence when they are doing their socia1 care assessments!

Edit - I did have my 1ast PIP assessment 1ying in bed. I think this he1ped make the point about the severity of my ME to the assessor. But I a1so have other disabi1ities that have NHS reports (such as autism and ADHD) as we11 as other medica1 conditions which are much easier to evidence than my ME.

 

it certainly would!

it isnt supposedly about sympathetic appreciation, but these are human beings and their preconceived ideas cannot help but be the filter through which all information they here is run. Regardless of what any guidance says.

As @Simbindi says, in my experience the DWP Decision Makers simply rubber stamp what the assessors say, which gives good/bad outcomes depending on the assessors report.

 

In mine, too, even when what the assessor has said is demonstrably untrue.

 

Including my caree, shortly before Covid - she lost her appeal because, being housebound and semi-bed-bound at the time, as we had pointed out on the paperwork, she had been unable to attend the appeal tribunal

 

Appea1s are rare1y won if you can't attend in person. Technica11y you can ask for the appea1 to be heard in your home, but this is rare1y approved. I've not heard of anyone who's managed this (or even tried to get one). It's the reason I recommend fi11ing out the origina1 PIP/ESA forms in a great dea1 of detai1, as the tribuna1 wi11 receive a copy of this in the evidence bund1e.

See - https://www.nottinghamshire.gov.uk/media/132464/challengingbenefitsdecision.pdf

 

It's another reason to insist on home visits by the GP, as at 1east they can confirm that you're housebound to a tribuna1 (or in the PIP/ESA medica1 evidence).

 

Surely one issue here is lockdown/vulnerability added to anyone either applying or needing to submit a review who needed help to fill in the form.

I don't know what the current vs before lockdown set-up is across all geographic areas but get the impression access to home visit support for form-filling has not been possible for many. If you are too ill to write then what do people do? And how does that work? Ditto I guess for getting forms to the post.

COuld that piece of work theoretically not be something that could be being surveyed and checked? Although I'm aware that there is the added layer of ME being a tricky disability vs some others regarding filling in the form itself and what to put down

 

Re: the last para, I think that speaks to how poor ME care and management is vs where it could be as exampled by other things? I find it hard to justify that they cannot do 'tests'/reports that show the extent of disability in ME - particularly psychometric type - and I also don't think that staffing issues would be a problem given it would require scientific psychologists rather than the type in the NHS already, so not 'drawing on a pool of medical staff needed for other things already' there.

I suspect that with the right will the same might be true for genuine scientists-types or just good OTs etc in the physical too. It isn't at all as invisible, even in those who seem very capable in their good days, as the PR likes to make out.

As an aside this would surely be useful for research and moving the area forward re: whether treatments work if clinics focused on that basic. Just beginning with getting clinics to see/meet the most severely affected (yes home visits, and maybe having to work out how to do that without causing harm if they are disturbed by entering the room etc) instead of the other way around might change the literature somewhat.

But if assessors are drawn from a pool of allied and medical professionals and those rarely see those severe due to this issue then it is a bigger problem than biomarker alone.

 

Yes. I think, for me at 1east, the main prob1em with getting up to date medica1 evidence for the severe ME is that I am not under any consu1tant 1eve1 care for this. My GP doesn't think it's 'her job' to supp1y any evidence for either benefits or other issues, such as socia1 care or the DFG. This puts PWME in a 'Catch 22' situation, because these assessments DO require medica1 evidence. It's something I sti11 have to take up in writing with her. I need to cha11enge some of the things she's said to me when I've asked about this in the past, but of course I've been too i11 to do this over the 1ast year!

 

This was even after I made the point that 'of course' I'd pay any fee for a supporting 1etter!