The new NICE guidelines - do they affect benefits at all?

Just wondering whether the new NICE ME/CFS guidelines can be beneficial at all in relation to all the various UK benefit applications? Haven't really thought this through yet.

 

I can't find the most up to date version but this was the training module in 2015

https://www.whatdotheyknow.com/requ...D S2 CMEP 0017 Mod 6 Chronic Fatigue.pdf.html

 

Given the new guidelines indicate there are no treatments for ME/CFS, is this grounds for arguing the people with ME/CFS are unlikely to see significant changes in their symptoms over time, suggesting that any benefits reassessments are unlikely to produce different results and so should be much less frequent?

 

The law says that ESA reassessments must occur at least once every 3 years.

The new guidelines do not change the law.

The law doesn't care what's wrong with people. Neither does the DWP, or the government.

They only care that sick people are ground to dust on the reassessment millstone as frequently as possible - this is after all how their subcontractors make massive profits.

Which means that I probably have 3-4 more to go before 'retirement'.

 

Do you know if this also applies to PIP?

[added - my original PIP award specified it was for three years, whereas my most recent did not indicate a time frame.]

 

It does not.

 

I dont think so @Peter Trewhitt because i know some people do get longer PIP awards.

I havent had an ESA reassessment in 6 yrs... it has been twice 'deferred'. so while an ESA 'award' may not be more than 3 yrs, they certainly dont do everyone every 3yrs regardless what the law says. I think the reason for my deferment was a hugebacklog on occasion 1 & a very recent PIP assessment on occasion 2 - I get enhanced mobility 'cant walk 20mtrs reliably repeatedly safely', so the highest ESA criteria (cant walk 50mtrs r,r,s) had already been confirmed as being met 3mnths previously.

 

The ESA work capability assessment disregards the actual illness you have and is based on how the illness affects you on a day to day basis. Two people with an identical health condition can be given quite different assessments.
So I don't think the NICE review will have much impact on assessments.

 

no but it may have an impact on the assessors, which would massively impact the assessments.

I dont know how that can be affected, but if we could change the attitude of many of the assessors it would help.

 

I think you could use it to try and get a longer PIP award @Peter Trewhitt particularly if you've been ill a while.

On the claim form you could make a case to indicate that the prognosis for you is poor because there are currently no treatments for ME/CFS, quoting the NICE guideline, and that you have been ill longer than 5 years and quote the section on prognosis from 'The Chief Medical Officers Report on CFS/ME 2002'. Then if the assessor ignores it and recommends your claim be reviewed in 3 years again you'd have to make a case to the Decision Maker.

When I was being transferred from DLA to PIP I learnt from Benefits & Work that there is a small window to write to the Decision Maker before you've actually got the decision to try and influence the outcome. The HCP had given me enough points for an enhanced award for care and mobility but had recommended that my claim be reviewed in 3 years with the justification 'ME/CFS is not incurable'. Had the NICE guideline been available then I would have been able to quote it but I had included some other helpful things in my claim as I thought prognosis/length of award might be an issue and so I wrote to the decision maker and thankfully got the 10 year award that I felt was appropriate.

According to Rightsnet you can actually appeal an award just on the length even if you've got enough points - I was considering doing this if need be. I've been thinking recently that had I been given a 3 year award I'd be facing going through it all again about now whereas having that horrible pressure removed as helped me such a lot to concentrate on other things that need doing.

I personally think you could use the NICE guideline for both PIP and ESA claims if there are parts that help you argue your case.

I've only had one ESA assessment in 2013 when I was transferred from IB but I was on higher rate care for DLA before PIP which I think helped.

 

In strict terms the guideline shouldn't have any effect, as awards are supposed to be based on how an illness affects the claimant, not what their diagnosis is or what any guidelines about it say.

I've heard reports of issues with assessors questioning whether people have or haven't taken part in GET/CBT treatments, and if this has been a widespread practice, it probably ought to stop it—or at least give claimants a way of challenging it.

 

When you talk about writing to the decision maker @meg22 i'm not sure what you mean... presumably you dont mean for a mandatory reconsideration- because otherwise you would have said so, but I wasnt aware you could write to a DWP DM independantly. I assume you're talking about after the assessment, you ask for a copy of the assessors report... so you mean writing to the decision maker as soon as you've seen the report but before they have made a decision. How does one do that? I follow the benefitsandwork guides & i never saw mention of it.

I ask because i have 2 conditions, i got enough points for enhanced rate with just the ME but they added points for the other condition too. They suggested after this many yrs i would be unlikely to recover from the ME, but that the other condition may improve so they gave me 3 yrs. I'd love to have pointed out that even if i recovered from my 2nd condition completely it wouldnt make any difference to the award as i had more than enough with the ME points alone, so a longer award would be fairer/more sensible.

But i didnt want to go through with an MR in case they got shirty & reduced my award when they looked at it again. If i'd have known i could flag the issue up with the DM before a decision was made it might have changed things. I had an indefinite award of DLA but they only gave me 3 yrs with PIP (which of course is reallly only 2 since they review it a yr before it ends). The NICE prognosis stuff may well help with that in future.

 

I think it would be wise to stipulate on any claim form that you are already using energy management techniques to the best of your ability because otherwise they may assume that your ME could be improved if you are seen by a specialist clinic, under the new NICE guidelines. These are still framed as 'treatments' to improve symptoms and functioning, so a HCP could take that to mean a claimant's ME is 'treatable' if not fully 'curable'.

They may also expect to see some sort of formal 'Care Plan' since the new guidelines imply all PWME should be given one. For this reason I do intend to write to my GP about this in the future (probably not until next year as I'm not expecting any DWP benefit reviews).

I think it is likely I am being given 'light touch' or paper reviews for my ESA since being given an 'indefinite' enhanced care and mobility PIP award (with the mandatory 10 year light touch review) as I haven't had an ESA review for around 8 years.

 

didnt the old guideline say we were supposed to have a care plan?

 

That would suggest that we were supposed to receive care.

No point in a care plan if there is no care available.

(for the purposes of, well everything, I do not, and did not, consider CBT/GET and related things to be treatments/care or......anything positive)

 

Under the new NICE guidelines the Care Plan is supposed to be drawn up by a specialist ME/CFS clinic, not the GP. Then the GP is able to do the annual reviews of it with input from the specialist clinic if and as required. This may mean that the HCP would expect for the PWME to have been seen by a specialist clinic at least once and also to have had their diagnosis at this level, plus have a Care Plan in their medical evidence bundle.

I've seen people's ME being denied by HCPs because they hadn't been seen by a specialist ME/CFS clinic - even when they weren't any in thier area that would see severe patients! So I think it is best to be proactive in this with one's GP. We don't yet know how Maximus, ATOS and Capita will revise how they see ME/CFS or what any of their training manuals will cover. So I'd always recommend claimants taking an over-cautious approach rather than making assumptions on these issues.

 

Yes the 2007 guidelines advised we should have a care plan with regular (annual??) reviews.

 

Mine is every 3 years too, but they contact me every 2 years. It’s very stressful. Same for ESA I think, although I need to check. At the first assessment they said it’d be every 3 years because people with ME can improve, so I could improve too. Then they just kept it as 3 years again in the second assessment. I think I’m coming up to my 3rd assessment soon.

I would also, like JemPD, be interested to know how to get an award for 10 years instead? They never asked me anything related to that at my assessment.