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

I wonder if ME/CFS is being accurate1y recorded on the DWP systems?

N.B Quote is from the 1ink -

https://www.gov.uk/government/stati...s-to-improve-the-design-of-the-benefit-system

 

https://www.disabilityrightsuk.org/...y-group-health-and-disability-benefit-receipt

So, did any of out ME charities get invo1ved in this? Somehow I doubt it. As others have mentioned, they focus on the mi1d end of the spectrum who are ab1e to work with adjustments. Moderate and severe sufferers who need the support of state benefits aren't being advocated for in any meaningfu1 way.

 

'This includes the proposal to remove the safety net criteria of “substantial risk” to physical or mental health if found not to have a LCWRA'


The meagre safety nets that were part of the awful WCA (but then only if you knew about them and how to argue your case) are being removed.

The savage sickness benefits 'reforms' from 2010 onwards did not save money for the government. The huge costs of ESA and PIP appeals were greater than the supposed savings. The cruel sanctions were/are just arbitrary punishments. It was all a spiteful charade which gave 'the public' soft target scapegoats.

The new proposals are monstrous.

 

Inhumane disability benefits assessments need reforms

Inhumane disability benefits assessments need reforms but not the way Tories think (msn.com)

 

Hello all...

Dispatch from the front line.

I just had a PIP telephone assessment today. This is the second time I've applied for PIP. The first time I was denied initially, denied at the Mandatory Reconsideration and then denied on appeal at Tribunal.

I made a new application in May this year (2023).

I learnt some lessons from my first application. The first time round I recorded the assessment, and more recently (after the tribunal etc) I actually got the recording transcribed.
I compared the transcription with the assessor's notes, and I saw that there were some questionable discrepancies between what I said in the assessment, and some things the assessor wrote in their notes.

For example, I spoke about the range of cognitive and sensory issues & and symptoms that I experience, and the assessor repeated them back to me in the assessment, and wrote most of them down in their notes,
but then at the end of the section wrote "The claimant did not report any cognitive or sensory problems".

They also wrote this:

"Claimant was able to speak clearly on the phone without assistance and tolerated the interview without difficulty.
Claimant was able to give a comprehensive account of their condition without prompting from the assessor or anyone else.
Spoke at a normal volume, rate and with a pleasant tone. Established good rapport.
They were oriented to date, time and place.
Demonstrated good insight"

I assume (though I don't know), that the assessor's assertion (which they did not discuss with me) that I tolerated the interview without difficulty, spoke with a pleasant tone and established good rapport, were points against me.. proof that I don't need assistance etc.

There were some other things as well.

So that was my first telephone assessment, in July 2022. Since then, predictably, my health has very slowly but very surely been declining, probably largely due to the fact that I'm having to keep working and constantly push my body way beyond the safe limits.

So I re-applied in May 2023, and today was the telephone assessment.. This time..

Oh boy.. it was 2hrs & 50m long! I made sure to have a friend on the line as well (that is something you're allowed to do), which was actually massively helpful.
I took two long breaks, which I really needed!
I made sure as often as possible / as often as I could remember, that when the assessor asked me whether or not I could do something, for them to confirm that they were asking whether I could do that thing reliably, safely, repeatedly, and in a reasonable time period.

( Reliably
To be assessed as able to carry out an activity to the level described in a descriptor, a claimant must satisfy the descriptor “reliably”, that is: safely, to an acceptable standard, repeatedly and in reasonable time.

Legislation
The meaning of "reliably" is defined in regulations.

Regulation 4(2A) of the main PIP regulations provides -

Where [a claimant's] ability to carry out an activity is assessed, [the claimant] is to be assessed as satisfying a descriptor only if [the claimant] can do so - (a) safely; (b) to an acceptable standard; (c) repeatedly; and (d) within a reasonable time period.
Regulation 4(4) of the main PIP regulations provides -

1. "safely” means in a manner unlikely to cause harm to [the claimant] or to another person, either during or after completion of the activity;
2. “repeatedly” means as often as the activity being assessed is reasonably required to be completed; and
3. “reasonable time period” means no more than twice as long as the maximum period that a person without a physical or mental condition which limits that person’s ability to carry out the activity in question would normally take to complete that activity.

Source: Regulation 4 of the Social Security (Personal Independence Payment) Regulations 2013 (SI.No.377/2013), and regulation 4 of SR.No.217/2016 in Northern Ireland. )


Unsurprisingly, they didn't like this, and eventually got so frustrated that they had a go at me, said I was trying to make their job difficult, complained that the assessment had already taken 1hr30m and there
was still a lot more to do, said that they understood that this was difficult for me, but it was also very difficult for them, and said that if I continued to not give them the information they were looking for, they could decide to abort the assessment, and reschedule it and start it all over again from scratch another day.

At which point my friend stepped in and gave them a bit of a talking to.

I also made sure to make it very clear that the process of doing the assessment, and preparing for it, was damaging and unsafe in itself.

There was this bizarre circular thing going on where they would ask me if I can do something (e.g cook regularly), I would say "no", they would say "why not?", I would say "it's unsafe", they would say "why", I would say "it causes damage to my health, I have to recover, it causes all the symptoms I've been talking about to get worse", and then they would say "which symptom?", and I would say "all of them", and they would say "but which one?", me: "all of them".. etc etc. This happened multiple times.. assessor was getting v frustrated.

Anyway, I recorded the whole thing again, and have sent it off to be transcribed... we'll see what happens this time.

 

I found that attitude @josepdelafuente - they want it answering in a certain way and you have to fit in with that or they get mad. Also found you have to repeat specifics of each symptom for every single question. I hope the outcome is good, its awful going through it i glad you had your friend there for support.

 

I wish you all the best, Josep. It's a nightmare.

There was a whole lot more bad stuff yesterday. I'm not up to linking to it.

I do wonder when they report mental health and musculo/skeletal problems issues as the main reasons for the increase in economic inactivity & sick leave. I don't believe the "unsuitable furniture for working at home" story. Wasn't the DWP coding "CFS" under musculo/skeletal? I think there was a question about it in Parliament & a promise to move it, but I don't know if that's happened.

Delayed treatment due to the pressure on the NHS obviously plays a large part & there's been an upward trajectory in mental illness over several years, & the sharp increase in poverty & poor working conditions will have an impact on that. However the largest impact on global health in the last 3 & a bit years, Covid-19 damage, seems to have almost been disappeared. I wonder if, building on all the existing factors that we are so aware of, this is deliberate policy.

 

I noticed that Benefits and Work are trying to encourage patient charities to submit a response to the WCA consu1tation and are offering free support for them to achieve this -

https://www.benefitsandwork.co.uk/news/take-the-worst-case-wca-test

I don't have any contact or membership of any UK ME/CFS charities (due not just to the severity of my ME, but a1so my autism) but if anyone on this forum does, it wou1d be worthwhi1e passing on this message.

 

I don't think people should take Benefits & Work's worst case wca test. It'd be too distressing & the comments includes people who have taken it & wish they hadn't.

• As things stand, spending on Employment Support Allowance and Universal Credit health support is due to rise 13% in real terms – from £25.9 billion in 2023/24 to £29.2 billion in 2027/28 – with over 500,000 more people brought into those benefits, taking the caseload over 3.5 million people.
  • This compares to £15.9 billion being spent on this support in 2013/14.

Well, of course spending will be higher over time, & inflation is extremely high at the moment. The UK also has an aging population & millions have been subject to years of delay in their retirement age, principally affecting women. Instead of having the security of their state pension, those with health problems have had to continue claiming out-of-work benefits or make new claims if health problems have developed after what used to be the retirement age. It's duplicitous of the UK Government not to take in consideration the much greater savings made by the increase in the pension age, not just to public spending in general, but within the same Department.

 

I agree, that's why I didn't mention the test in my above post, just the need for our charities to respond to the WCA consu1tation.

Edit - I suspect Benefits and Work created the test part1y to impress upon disabi1ity charities how significant1y some of their members wi11 be affected both by any changes in the WCA test itse1f and a1so what wi11 happen if it is removed comp1ete1y.

 

its in the link you posted.

Actually i prefer to be prepared so i did take it, but it only confirmed what i already knew ...that i and many others are royally screwed if the plans go ahead

 

This.

Many of those women will not be receiving £10.5k a year each in pension, and paying in tax and NICs. My neighbour's struggling by on slightly above minimum wage, but she's still chipping in over £2.5k a year.

There are said to be 3.8 million women affected by the age change, and even if only one million of them were contributing the £13k a year my friend is, that's ... not an insignificant amount of money. It's likely that more than a million are still contributing, some of them more than Anne.

 

I hadn't read a11 the news posts when I put the initia1 1ink in my above post but there is a more specific 1ink for charities here -

https://www.benefitsandwork.co.uk/news/free-wca-consultation-support-for-organisations

 

I did too, but mostly because I hadn't really got my head around the full implications. It made me realise I've probably never had a WCA because they already knew from my DLA assessment that I'd qualify for the support group under the mobility aspect. That would go if the proposals are enacted, and by answering pessimistically, I only scored enough points for LCW.

I doubt the changes would go ahead in their current form, as even if the same government were in power there's always some horse trading during the process of designing, drafting, and enacting new legislation. I hope organisations will take part in the consultation, though; even if they're not able to respond with detailed, legally-informed responses, sheer weight of opposition can make a difference.

 

I think it’s wonderful that B&W have done this work for charities. I think charities are obligated to work collectively in service of those who depend on them and it makes sense for them to follow the lead of the experts in this area of policy and law the specialists as B&W are. For smaller charities this will be their only opportunity to access such knowledge due to funding limitations. B&W need numbers to back their opposition. So it’s win win.

However it is sad that the charity sector including large well resourced organisations- at times all people in difficulty might access in a moment of personal crisis inflicted by the state- tend to take a passive or reactive stance on these issues.

Charities may support individuals after the fact of such legislation and may write stiff letters on the human costs of these policies and practices of government. But don’t tend to prioritise pro-active campaigns, vigilant monitoring of political and policy developments, spending on legal support, ongoing staff education on this subject, or professional communications on the matter.

But that’s not surprising. Charities are weary of being seen to bite the hand that feeds them or upon whom their charitable status depends. Status as “non-political.” Awkward. Health, disability and social care allocation occurs via policy. Policy is politics.

Unfortunately when clients and client self advocacy groups bring up the charity’s organisational failures to advocate effectively by charities these complaints and concerns are usually met by platitudes and stock answers ‘learning’ ‘on this occasion’ and ‘hands are tied’ ‘can’t do everything’ ‘funding constraints’. Individual workers may go out on limb for their clients but centrally the organisation comes first. This is publicly acknowledged under the premise that the charity may fail many or all clients to a degree but that this is inevitable, without their willingness to make such vast compromises they would not be allowed to exist, and
would help no one. So it’s a little something or a lot of nothing for the client.

Whereas
direct threats to organisational security tends to lead to more meaningful responses. These come only from higher up the power structure. ‘Look after your people but not too well… Not such that they can defend themselves or be defended to our inconvenience.’

With this context in mind. I am worried not enough people in the charity sectors will be ready to listen to this warning. Or to respond with necessary focus and sense of urgency. I do hope that they will.

 

This is super helpful, thank you. I have shared it with MEA, AfME and the Disability Benefits Consortium coordinator as well as my local group contacts. Hopefully this will help with numbers of responses.

 

Very depressing comments made at the Conservative conference about sick and disab1ed peop1e not rea11y being too i11 to work.

TRIGGER WARNING - I on1y read these updates myse1f because I want to be prepared for a worse case scenario, but it makes me sick to my stomach.

https://www.benefitsandwork.co.uk/n...rmer-sanctions-and-human-beings-freed-by-work