UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 and 2025

I use aids for medication and supplements, daily pill boxes, alarms that list exactly what to take. And still I sometimes take the wrong thing.

 

I've got three for an eating related one, but they've re-awarded the same for an assessment done years ago. The scoring might have changed now.

I don't know the rationale as I never asked for that first assessment report. I meant to request it—benefits advisors usually recommend people do, even if they get an award—but the process was so challenging that afterwards I couldn't even face thinking about it, let alone reading it.

 

Yeah that’s not a thing any more. I guess having (most) scores being an even number helps because 8 is the first threshold.

 

This is a post from the PEM Discussion thread—hope @MrMagoo doesn't mind me answering it here!

I wonder if we sometimes understate how devastating PEM is. If we do slip into self-gaslighting, there's a risk it could come through in how we word our applications.

I started drafting mine not long after PIP was introduced, because I knew I'd struggle if my 'invitation' arrived when I was really unwell. I wrote answers to most of the questions, stuck it in a drawer for a few months, and when I looked at it with fresh eyes I could see how weak my case was on the effects of PEM.

So I imagined Chris, a boyfriend from years ago who went through an awful few months after a road accident, and drafted an answer to one of the questions as if I were him. Obviously I'd no intention of submitting it; I just wanted to see what happened to my language when I described how the injuries affected his ability to do things, and that if he tried to do them he'd have a long setback afterwards.

It was noticeably different. Something in my brain seemed to view being knocked off your bike as more real and more disabling than PEM—even though overall I'm more impaired than Chris was, he got a lot of help that I don't get, and he'd had morphine to help him cope.

I also realised I was writing as if I fully expected to be believed. It was a really interesting exercise.

 

When I did my first one I thought being totally accurate would be understood. But instead they picked out little things and drew conclusions from them that weren't accurate at all.

For the mandatory reconsideration I researched how to use language appropriately specifically for PIP applications and even then they still drew completely different conclusions than what I was saying.

I don't even understand if they listen or read properly. Before my trubunal the case worker read and heard everything and could see exactly what I was saying and even said he could see there was ongoing stuff yet to be figured out.

I have no confidence that getting the language perfectly works.

And they throw in casual off script questions that are designed to throw you off guard, like do you have a pet, do you feed it etc.

 

It's the luck of the draw to some extent, and our approaches all differ anyway. I just know mine was stronger for being written in a different frame of mind and thought it might it be useful to others.

It didn't stop me being put through a hideous assessment first time round, but they did award both components.

 

PS: I was advised to head off questions about pets in advance. When I first claimed mobility allowance in 2002 I told them I had a cat; luckily cats are really good at jumping onto tables, so I never have to reach down to pick up a food bowl...

 

My cat is the thing that makes me get up when I wouldn't otherwise but I wouldn't mention that.

 

I'm only watching this mess from afar and haven't read enough to see if someone did, but in all those discussions about the way the system was designed this way, it seems that no one ever points out or is concerned that it was explicitly designed this way. Despite ample evidence about this very thing, which they seem to have discovered yesterday. And decades of complaints, protests, studies and papers showing how such a design is incompatible with reality. Medicine claims to recognize this problem, but almost never in reality. They recognize the idea of it, but every instance is disputed based on the idea that it doesn't exist, where "if you can walk 50M, you can work full time, run marathons, the whole nine yards".

Because it was designed this way. By choice. By people, most of them medical experts, many of which currently still hold positions of influence over this process, several who no doubt hold even more influence. And yet the way it's described is always with this passive voice, as if it may as well have been handed down from heaven on stone tablets, divine orders that can only be strictly followed.

It's like everything in health care that happens beyond the limits of what they can handle happens in a state of perpetual amnesia and a sort of fog of war, where no one ever does anything, things just happen, no one is responsible for anything and no one ever asks questions about any of those things. They just follow orders. Or give out orders. But no one is ever responsible. Because no one ordered this. Well, they did, but it all happens in secret behind closed doors so whatever.

Those systems were designed this way on the explicit advice of many physicians, mostly adopting the awful biopsychosocial ideology, which remains for all intents and purposes the law of medicineland. Despite massive evidence that it's nonsense. And now that this system is breaking down, predictably, it's so obvious that they will simply double down, using the same language and aims, while somehow pretending otherwise, not going right anymore, instead going the opposite way of left.

It's all manufactured reality with barely any connection to the real world. Like they keep talking about those people who could work if they had accommodations, but of course almost no employer is interested in that, in most cases it's far below a living wage anyway, which no one ever seems to be bothered with. And work from home has been massively discouraged. Telehealth is being removed. All the accommodations have been scaled back. All the necessary conditions for this to work out have been weakened or removed entirely.

We truly are living in a sort of QAnon fantasy world. People get serious about things when their interest is at stake, but otherwise it's delusional fantasy all around, everywhere, all the time.

 

It's funny you mention marathons. I actually read in some cfs article who knows where "and some people can run marathons". Who? How? These can't be average people with cfs. And it absolutely feels like that's the reality with assessments.

 

I just want to pop-in here and send solidarity to anyone affected by the recent news. It sounds awful. I don’t have the energy to read this thread, but I really really feel awful for those of you affected, and send hugs and solidarity.

 

Yes it's all very distressing to read even for someone like me who won't be affected by the changes. I reach that "magic number" in less than a year when I will be given even more money without having to prove I can't work and will be viewed by the rest of society as deserving of that money "because I earned the right to it" as the newspaper comments section always points out, instead of being viewed as a scrounger even though I earned the right to it by paying the same National Insurance for both benefits.

 

My point was that I think this is the only illness where you have to stop doing things before they make you unwell (induce fatigue or PEM). Benefits aren’t set up for that. Nothing is, really.

 

I agree, my language and reasoning and citing of the law were brilliant, but they still found (ridiculous) ways to justify their decision.

 

They actually looked annoyed at my tribunal when I said I didn’t drive (never took the test) and didn’t have a blue badge (don’t drive, don’t get driven anywhere except the supermarket, which has a car park). I guess these are the usual areas where they “catch people out” and I accidentally wasn’t playing ball.

 

Really, is that right?? That's a bit more hopeful than my impression as I thought they were abolishing the WCA altogether and making no distinction between LCW and/ or LCWRA (whichever of those limited capability groups) and those who are able to work; and the only way to get any health component added to out-of-work benefits would be to take the PIP assessment. So I assumed that the LCW tier was disappearing altogether and it would then be either just the standard allowance of Universal Credit (currently, only £393.45 a month) or that plus the full LCWRA health component (an extra £416.19 a month) for people that qualify through PIP daily living? This seemed problematic to me.

 

I think that's how I read it too, although they are talking about an increase in the basic rate of UC to give some compensation (a fair bet that it won't be nearly enough).

But some of it needs legislation, so it's not cut and dried yet.

There are comparable situations.

Looking at it through the eyes of someone who'd had an accident helped me realise that it should be possible to make the argument. No one would have expected Chris to try walking to the shop—he would have been in a lot of pain whilst doing it, but more importantly it would have caused new damage that meant he couldn't do essential self-care until he recovered. Very different to PEM, but the principle was similar.

I've since worked with someone with cerebral palsy who had to manage their impairment like that. For them, it was to do with getting severe muscle cramps by going over an activity threshold, which would leave them struggling for quite some time to do anything else.

PEM's much harder to explain, but it's not unique for people to have to limit activity to avoid worse disability. Still the luck of the flaming draw who you get as a decision maker, though...

 

The government said they would increase the Standard Allowance for Universal Credit by £775 a year by 2029/30, that will amount to an extra £64.58 per month bringing it up to £458.03 per month.

 

Great—not even as much as the Covid uplift.

 

From what I understand stand, they will-

Increase UC for everyone claiming, from about £400 per month to about £775 per month

Get rid of the WCA assessment (with its different criteria and points from PIP)

Merge LCWRA and LC to form the “health group” and receive the “health” payment on top of UC
-I’d assume the payment will be a very low one, the LC is currently £156 per month (vs the LWCRA of £416)

argue that previously LCWRA claimants now receive about 931.00, which is more than the previous UC + LCWRA amount, therefore supporting disabled people with money, and into work;

Allow some people with “severe lifelong disabilities who won’t improve” to be excused from preparing to find work (presumably these people should also get PIP), whilst the rest of the “health group” are expected to “prepare” to work (my concern here is being sanctioned for failing to attend CV writing courses etc)

Make PIP more difficult to get - unsure yet if the PIP assessment will relate to the UC “health group” anything is possible.