UK - Anyone know what the DWP/Capita etc are told about ME/CFS? assessors Decision MAkers

JemPD

JemPD

Senior Member (Voting Rights)
Years ago i read the guidance that DWP/ATOS/Capita assessors are given about ME/CFS, but i cant find it now & it's likely out of date anyway.

So does anyone have an updated (or even outdated) version (link etc please?)

I'm asking because i've got a review coming up, & throughout the previous assessment they refused to take anything related to memory/confusion/cognitive dysfunction into account because they kept saying " you state you ........ but you do not have a diagnosis of cognitive impairment that would impact on your ability to _____ "(cook/manage money etc)

But surely even the most basic dx criteria say we have brain fog. So i want to know what they are told about it. So i can gear my wording to what they are told - i have found historically that its much more difficult to challenge what they're told than to work within it.
 
Merged thread

Please help me find something in the NICE guideline

Sorry but i just looked at all the NICE threads & my brain just swimming.

Can somebody who's a bit more with-it please point me to the link for the published guideline.

I want to fill in the red blank below, so i can quote them in a benefit review saying something like....

'In my last PIP assessment you said i did not have a diagnosis of cognitive impairment that would impact my ability to cook/manage money etc, but ME/CFS includes symptoms of ......
Section ________ of the 2022 NICE guideline states _______________________

Thanks for any ehlp
 
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Yes but 'brain fog' is not very descriptive. It's a general term. My sister has Hashimoto and says she has 'brain fog' when she eats certain foods.

I use the term cognitive impairment which describes having difficulty concentrating/remembering, learning new things and making decisions that affect my everyday life.
 
The new NICE guideline may also be useful:
https://www.nice.org.uk/guidance/ng...e-diagnosis-and-management-pdf-66143718094021
Page 8 in the section on severity levels:
Severe ME/CFS People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound.

Page 12 key symptoms of ME/CFS:

Box 2
Symptoms for suspecting ME/CFS
All of these symptoms should be present:
• Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.
• Post-exertional malaise after activity in which the worsening of symptoms: － is often delayed in onset by hours or days － is disproportionate to the activity － has a prolonged recovery time that may last hours, days, weeks or longer.
• Unrefreshing sleep or sleep disturbance (or both), which may include: － feeling exhausted, feeling flu-like and stiff on waking － broken or shallow sleep, altered sleep pattern or hypersomnia.
• Cognitive difficulties (sometimes described as 'brain fog'), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.
 
Mij said:
Yes but 'brain fog' is not very descriptive. It's a general term. My sister has Hashimoto and says she has 'brain fog' when she eats certain foods.

I use the term cognitive impairment which describes having difficulty concentrating/remembering, learning new things and making decisions that affect my everyday life.
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InitialConditions said:
Yep, I use cognitive dysfunction/impairment.
Click to expand...

Mij said:
You could also add that physical energy expenditure negatively affects your cognitive impairment and vice versa.

I described this in more detail when I filled out my Disability Tax Credit form and my GP approved it.
Click to expand...

Yes, i did. I never use the term brain fog except within discussions with other PwME - as short hand. I always use cog impairment, and did so in my PIP form and at assessment. But their response was to refuse to recognise it because 'you dont have a diagnosis of cognitive impairment'. They disnt see cog impairment as being any part of ME/CFS. I got an award that was ok & the stress of appeal wasnt worth it, but since i have a review due i want to see if i can highlight that actually, (even in the most ignorant & unawre diagnostic criteria, 'brain fog' difficulty concentrating etc is rcognised.

It seems from my overall experience that if you use language they accept already it will be accepted if you dont they just fall into their defailt position of disbelief.

sorry about any speling mistaked i dont have enegry to proof post.


Trish said:
The new NICE guideline may also be useful:
https://www.nice.org.uk/guidance/ng...e-diagnosis-and-management-pdf-66143718094021
Page 8 in the section on severity levels:
Severe ME/CFS People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound.

Page 12 key symptoms of ME/CFS:

Box 2
Symptoms for suspecting ME/CFS
All of these symptoms should be present:
• Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.
• Post-exertional malaise after activity in which the worsening of symptoms: － is often delayed in onset by hours or days － is disproportionate to the activity － has a prolonged recovery time that may last hours, days, weeks or longer.
• Unrefreshing sleep or sleep disturbance (or both), which may include: － feeling exhausted, feeling flu-like and stiff on waking － broken or shallow sleep, altered sleep pattern or hypersomnia.
• Cognitive difficulties (sometimes described as 'brain fog'), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.
Click to expand...
FANTASTIC Trishh thanks so much will use that :)
 
@JemPD

I missed the point you made about proper wording and how it relates to M.E. My Disability Tax Credit renewal is not based on a diagnoses, but how my disability impairment affects my day to day life, so there isn't a specific guideline to M.E.
 
Mij said:
I missed the point you made about proper wording and how it relates to M.E. My Disability Tax Credit renewal is not based on a diagnoses, but how my disability impairment affects my day to day life, so there isn't a specific guideline to M.E.
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yes & thats how its * suppsoesd to work here too. But the issue is that their point of view is that if the dx you have doesnt include symptoms of a spficic thing then they deem you cant have that difficulty. So if they believe ME doesnt affect your cog ability then you cant have difficulies with it. Your difficulties have to be 'consistent with' your dx, or rather wth their opinion of it.
 
I think Charles Shepherd and the MEA were involved in discussions with the DWP and their contracted assessor companies about information and staff training relating to ME/CFS, but as always my memory is incomplete about what stage they got to and what has been shared on this.
 
in early 2020 i had a tribunal hearing for pip .at that time i had a small usb stick with the dwp rules and understanding of M E .unfortunately although they took the usb stick of me they never returned it but the dwp rules excepted that cognitive difficulties were a part of m e .. i won that appeal . the person representing the dwp seemed to have nothing to say i think case managers just want any reason to prevent people from receiving benefits . perhaps getting a pat on the back from their supervisors is worth destroying peoples lives .
 
alktipping said:
in early 2020 i had a tribunal hearing for pip .at that time i had a small usb stick with the dwp rules and understanding of M E .unfortunately although they took the usb stick of me they never returned it but the dwp rules excepted that cognitive difficulties were a part of m e .. i won that appeal . the person representing the dwp seemed to have nothing to say i think case managers just want any reason to prevent people from receiving benefits . perhaps getting a pat on the back from their supervisors is worth destroying peoples lives .
Click to expand...

Often the DWP do not send any representative to the PIP tribunal hearings just submitting the written reports from the previous stages.

It does seem fairly random as to which initial PIP applications are actually assessed on the evidence and which are rejected apparently out of hand, but whether they don’t defend many appeals in person is due to knowing the initial decision was indefensible or from insufficient staff I don’t know.
 
Focusing on the DWP tribunal process. I am not a lawyer but I would imagine that, post the 2021 NICE guidelines on ME, there could be room to bring a legal complaint against the very nature of that process.

I have not been through it myself but it sounds as if the demands of engaging with it would necessarily pose a health risk for someone with moderate or severe ME. It would seem to create demands that run counter to the NICE guidelines on mental and emotional energy management, which were of course created with the aim of avoiding a relapse, and potential permanent worsening of ones health.

At the very least someone with ME could submit a 'necessary adjustments' requirement document at the start of the process, citing the NICE guidelines on energy management and the serious potential consequences of not observing them, and thus explaining the need for substantial moderation of how the process is run in order to minimise the risk of it causing permanent damage to health. This is something that the Self Advocacy team at Action for ME would probably be able to help people with.
 
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