We have just been through the reassesment and even the assessor agreed their script did not capture the reality of how cfs effects daily activity. They did not wish to discuss reliability repeatedly etc as it was off script. Saying ME was not an option it was called cfs . So I suggest you need to weave In to you answers ...I cannot do the question due to ME causing me to not be able to repeat x activity reliably or safely as occures and give an example. I felt the assessor was supportive but had no option to enter ME type replies on their form. But arthritis replies were readily accepted. We had a positive result but in no way did ME count for points in any category. I do to want to identify here but it's almost a case of Nelson I see no ships for ME. I despair of the work the charities say they do with the dwp it's clearly not reaching the script writers . I feel examples hammer home the reality and should be given during the assessment.
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- Thread starter John Mac
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That’s worrying that it’s being allowed to go backwards in such a way that specifically excludes me/cfs -
and I’m assuming maybe other conditions but it would be good to check if that is even the case , would these changes affect other conditions and are these issues in any way inadvertent?
Kitty
Senior Member (Voting Rights)
Absolutely, that's been the general advice since I applied first for DLA years ago.
Every response detailed that I couldn't do X for Y reasons, and the reasons I gave included the wording of the descriptors and were informed by the way DWP guidelines say they should be interpreted.
I also gave details of how long it had taken me to complete the application (I've never finished one in less than six months), what welfare advice I'd taken, and what help I'd received in gathering evidence, scanning and photocopying all documents and sending a copy Special Delivery to DWP. Anyone reading it could see it was the work of someone with enough cognitive function to research guidelines and caselaw and draft 6,000 words of cogent English, so I needed to underline that I couldn't do it in a few weeks.
But the next line after that from @yME where it says the assessor wasn’t then being allowed to enter those types of replies onto their form
Well that’s very significant
Kitty
Senior Member (Voting Rights)
Yeah, I wonder if it might partly depend on how you present, say, the reason you can't shower without an adaptation? For me it was muscle weakness, dizziness, and a documented tendency to faceplant if I attempted it standing up, I'm not sure I mentioned ME/CFS. *
My most recent assessment was done on paper without any interaction, though, so I don't have insight into what they thought.
* ETA: obviously as well as 'Needs to use an aid' I also gave that reason for 'Needs assistance' to shower reliably, safely and in a timely fashion, which was allowed even though I don't actually get help.
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MrMagoo
Senior Member (Voting Rights)
I see that successful PIP claims and appeals are dramatically down, according to benefits and work. I maintain my suspicions of “secret” rules behind the scenes.
Whilst I have not been assessed, at my tribunals it’s very clearly an exercise in “how to disregard” certain evidences. All of my submission was about unable to do repeatedly, reliably, to an acceptable standard etc. They just disregard it.
I can chop veg if I can brush my teeth even though 1) I use electrical toothbrush 2) I don’t brush them every day due to tiredness. When I tried to explain needling to lie down to wash hair due to weak arms, hence cant chop, I was stopped as we weren’t discussing washing, we were discussing cooking…
Whilst I have not been assessed, at my tribunals it’s very clearly an exercise in “how to disregard” certain evidences. All of my submission was about unable to do repeatedly, reliably, to an acceptable standard etc. They just disregard it.
I can chop veg if I can brush my teeth even though 1) I use electrical toothbrush 2) I don’t brush them every day due to tiredness. When I tried to explain needling to lie down to wash hair due to weak arms, hence cant chop, I was stopped as we weren’t discussing washing, we were discussing cooking…
Simbindi
Senior Member (Voting Rights)
The assessor was lying, they are able to add 'free text' to any of the basic script statements if they don't capture the claimant's issues.
See the PIPAT guidance here - https://www.whatdotheyknow.com/request/red_pipat_guidance_for_pip_asses#incoming-640064
I think ME/CFS is now considered under 'neurological conditions' by the DWP, although I may be wrong (but Google AI concurs...)
Claim PIP for ME and CFS
Get the benefits you're entitled to: help with personal independence payment (PIP), universal credit (UC), employment and support allowance (ESA),disability living allowance (DLA). Claims, assessments, reviews, appeals.
www.benefitsandwork.co.uk
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Simbindi
Senior Member (Voting Rights)
This is why it is so important to write your original PIP form with detailed answers. Write them as if you are going to have to go to tribunal. The tribunal will get a copy of them, so they will be able to see if the assessor gave your answers full consideration. When I was asked questions I just insisted my assessor read my written answers and use them on their report.
Simbindi
Senior Member (Voting Rights)
Yes. On my form (where applicable) I do write, 'the combination of my conditions/individually listed symptoms/PEM etc., cause x,y,z etc.)
Kitty
Senior Member (Voting Rights)
This.
Not least because if you do have to go to tribunal, what's in that application is a substantial part of what they're considering. Nothing that's happened or emerged or been clarified since is looked at, because they're reviewing the original evidence and the decision made about it.
If you make a really strong argument in the application, tribunals sometimes throw out the case anyway because the decision was clearly perverse. Not that it helps much, people still have to go through all the stress and waiting, but at least there's an award. And if it's taken away in future, the onus is on DWP to show why they were eligible then but aren't now.
If you filled out a PIP form, what did you tick for the questions where you need to provide further information? For example, 'Are you able to cook and prepare food? - yes or no'. The answer is yes to a degree but it has an impact. I don't know whether to tick yes or no. I will be providing extra notes about the impact. Is it ok to tick neither and say please refer to additional notes?
MrMagoo
Senior Member (Voting Rights)
Advice here
Q3: preparing and cooking a meal
Help to fill in Q3: preparing and cooking a meal for PIP. Find out what this means and get advice on how to complete the question.
I would say you should do a lot of research and join Benefits&Work if you can afford the £20, PIP is a different language to English and you’ll need to learn to speak it before filling in the form
Kitty
Senior Member (Voting Rights)
@Tia, if at any point you begin to think it's too hard to navigate the learning curve before the deadline for returning your form, don't be afraid to call them and say you'd like to close the claim because you haven't yet been able to get the help you need to complete it.
You can then work on answers to all the questions on the form they've sent you—which will be the latest version, so you can rely on the layout being accurate—and open a new claim when you're fully ready.
As @MrMagoo says, a Benefits & Work membership is well worth the money (they often offer a reduced rate if you sign up to their fortnightly email newsletter), and I recommend their PIP training course. It was very useful when I did my review form.
It's much less stressful to close a claim that than deal with the consequences of making a rushed application that might not be as strong as it could because you ran out of physical and emotional energy.
You can then work on answers to all the questions on the form they've sent you—which will be the latest version, so you can rely on the layout being accurate—and open a new claim when you're fully ready.
As @MrMagoo says, a Benefits & Work membership is well worth the money (they often offer a reduced rate if you sign up to their fortnightly email newsletter), and I recommend their PIP training course. It was very useful when I did my review form.
It's much less stressful to close a claim that than deal with the consequences of making a rushed application that might not be as strong as it could because you ran out of physical and emotional energy.
MrMagoo
Senior Member (Voting Rights)
Honestly just tell them you’re unwell and need an extension, I always do that, it’s fine. If anything it should help!
Kitty
Senior Member (Voting Rights)
I've never managed to get more than a fortnight, which I don't find enough. The forms take me months, as I need to keep putting them aside for a few weeks. I reach the point where I've spent so much time immersed in it that I can't spot weaknesses or inconsistencies unless I take a break. The process gets more and more demeaning as I describe all the things I can't do, so I also need mental wellbeing breaks.
I find it quite a task to rough it out and then check everything against guidelines, the decision makers' handbook, and any relevant caselaw to make sure I've presented it properly and not missed any opportunities. I've a theory (unproven and probably wrong) that some decision makers pick their battles, and if I show I understand the rules as well as they do they're less likely to think they could win a tribunal against me.
MrMagoo
Senior Member (Voting Rights)
I do the same but I do it ahead of time, then still need extra time! They don’t have to give actual reasons for their decisions though. I literally cited case law last time.
JellyBabyKid
Senior Member (Voting Rights)
JellyBabyKid
Senior Member (Voting Rights)
Same
My last submission was 108 pages.
I have kept and scanned every piece of evidence for the 17 years I have seen sick. I used Google lens to copy all the questions off the form to a Google document, used voice typing and included a complete copy as my continuation sheets, so it was easier to read. Because this was my ninth benefits review, I wasn't starting from scratch and could reuse past info.