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

[Simbindi]

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)

The new guidelines have separated out the 'Care and support plan' from the 'Management plan'. So you should still have the former even if you decide you don't want the latter specialist input for things like activity management or exercise plans. The former is the one that should be initially done by the specialist service (for people with all severity levels) and then reviewed at least annually by the GP (the latter is monitored under the specialist clinics). That is where the new guidelines put the onus on the GP to at the very least monitor our symptoms. This is what will be important as medical evidence to submit in any benefit claim applications and reviews.

 

[Simbindi]

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

It was really not possible to push the 'good parts' of the old guideline in terms of getting better care, as there was so much bad in them. Particularly the implication that 'CFS/ME' was being perpetuated by activity avoidance and could therefore by cured by GET and CBT. However, now it is clear in the new guidelines that this is not the case, PWME can push their GPs to get an appropriate Care and Support Plan set up, and have their symptoms (and other conditions) properly monitored. That may help with getting longer term benefit awards as you would then have good medical evidence to send in with claims and reviews.

 

[Peter T]

That is where the new guidelines put the onus on the GP to at the very least monitor our symptoms. This is what will be important as medical evidence to submit in any benefit claim applications and reviews.

My GP flatly refuse to provide any information for benefits claims, to me, to my CAB support worker and to my social worker, not even when I offered to pay for them to do this privately.

 

[Simbindi]

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

Yes, but most PWME learnt they needed to avoid the specialist clinics under the old guidelines, and GPs ignored the other parts of the guideline. The new guideline is written in a completely different way, and the emphasis and ordering of advice has changed significantly in such a way that GPs wouldn't be justified in ignoring it (and we can work with our CCGs to get the clinics to fulfil their responsibilities to provide services for those who cannot travel to the centres).

 

[Simbindi]

My GP flatly refuse to provide any information for benefits claims, to me, to my CAB support worker and to my social worker, not even when I offered to pay for them to do this privately.

That's why I would push for a formal Care and Support Plan and an annual review, because this then can be submitted as evidence.

 

[Ash]

That's why I would push for a formal Care and Support Plan and an annual review, because this then can be submitted as evidence.

Also if at all possible replace your GP with a less monstrous one?

 

[CRG]

They should no longer be able to deny people benefits on the grounds that they have refused the NICE recommended treatment, since the new guideline makes it clear there isn't one.

I don't think there ever was a legal basis for refusal on those grounds, though I'm sure it happened.

There was a conflation of (at least) two separate problems - one was the introduction of the work coach system along with dodgy privatisation of that system, the other was PM Cameron's big play in 2015 about reducing benefits if people on ESA didn't accept help [1]. It was implicitly medical help, because he focused on addiction and obesity.

A report was commissioned from er .... Dame Carol Black (who she ?), in the end her report [2] said nothing about removal of benefits but did recommend that claimants had to declare if they have a substance abuse issue and that does impact what they have to commit to in their claimant contract (or whatever it is called). Those provisions came in in 2017 (?)

The second problem was the creation of the work coach system and the involvement of dodgy private companies. One of things ESA claimants had to commit to unless you were in the most seriously ill category (now called Limited capacity for work and work-related activity) was undertaking training courses.

I can't find any details but I'm sure that early on there were CBT like elements in some of the 'motivational' courses and possibly GET type elements as well. Not participating in a course recommended by a work coach could see your benefits suspended, I'm not clear whether this would lead to refusal of benefit on a new claim.

The 2021 Guideline should provide an unequivocal protection for ME/CFS patients who are in the Limited Capacity for Work category from being forced on to any training course that involves physical exercise as part of their required "work preparation" activities.

ESA is being rolled into UC [3], but the process is years behind schedule.

[1] https://www.bbc.co.uk/news/uk-31464897
[2] https://assets.publishing.service.g...-of-drug-or-alcohol-addiction-and-obesity.pdf
[3] https://www.turn2us.org.uk/Benefit-guides/Universal-Credit/Claimant-Commitment-Conditionality#Ill

Edit to break up paragraphs.

 

[meg22]

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.

Yes that's right @JemPD - when you've received the copy of the HCP's report but before you've got the decision if there is anything in the report that doesn't look right then you can write to the Decision Maker but you have to do it fairly quickly.

I used to spend a lot of time on the Benefits & Work forum and the mods on there seemed to be always suggesting this to people when they were complaining about things in their assessment reports - that they had a small window in which to write to the Decision Maker before the decision was made, so when I got the copy of my assessment report through and saw what the HCP had recommended about reassessment I decided it was worth a try. I wrote a letter saying why I thought this statement in the HCP report was wrong and then referred to things I'd included in my claim form as well as sending a copy of the section on prognosis from the Chief Medical Officer's report. I just addressed the letter to the Decision Maker and sent it to the PIP office dealing with my claim. Maybe I would have been given a 10 year award anyway but it seems easier to try and influence the Decision Maker before they've made the decision.

I know what you mean about challenging them - it might depend how many points you've been given. There is a very small risk they might deduct points so if you're just hovering around the threshold for the higher rate you might not want to risk it but if you've got plenty of points then I'd say it's definitely worth doing. I was just so fed up of worrying about assessments that I think I would have even gone to appeal to get a longer award. Atos had made a mistake with my assessment so I was able to challenge them using the Equality Act and the HCP seemed to go a bit mad with the number of points to try and pacify me so I thought even if the DM deducted points I'd still get an enhanced award.

 

[JemPD]

Under the new NICE guidelines the Care Plan is supposed to be drawn up by a specialist ME/CFS clinic, not the GP.

That is where the new guidelines put the onus on the GP to at the very least monitor our symptoms. This is what will be important as medical evidence to submit in any benefit claim applications and reviews.

Well that is all very worrying frankly. Very worrying indeed.

I have never been to a specialist clinic and i dont intend ever to go to one, well not until the entire CBT/GET,GAT,GAM or whatever crap they want to call it next has been thoroughly dismantled.


I still have my original dx letters, and a letter from a psychologist saying that due to aspects of my history CBT could be harmful to me, and up to date letters from neuro of my functional abilities and a great GP letter, so hopefully that should be enough. It'll have to be because i aint riskin a clinic. Better to be penniless than sectioned.

Edited - forgot it was a public thread

 

[JemPD]

Thanks for that info @meg22 very helpful. I also use that forum a lot but i somehow must have gotten the 'short window' mixed up with the short window for MR.
Just to clarify - so you addressed it to 'Dear Decision Maker, please would you consider... etc'
How did you address the envolope? IIRC the mail i got just went to a sorting centre. Sorry Meg ignore this if it too detailed/ demanding, i will ask on the B&W forum when the time comes, its just i've noticed that with the loss of Gordon, who was a complete Godsend, the mods are not all quite as knowledgeable/experienced.

 

[Simbindi]

I still have my original dx letters, and a letter from a psychologist saying that due to aspects of my history CBT could be harmful to me, and up to date letters from neuro of my functional abilities and a great GP letter, so hopefully that should be enough. It'll have to be because i aint riskin a clinic. Better to be penniless than sectioned.

I'm sure you will be fine if your GP is supportive and provides good medical evidence for you anyway. But lots of PWME have struggled to get their GP to support their benefit applications to date, so the new NICE guidelines should support them to get the medical evidence they require in a much safer way. They also make it very clear that the patient does not have to have an 'activity management or exercise plan' to have a 'Care and Support Plan'. I agree that in reality it may take a long time for the specialist ME/CFS clinics to become supportive of the person with ME/CFS in the way the new guidelines intend, but the changes do have the potential to help the people with ME who have historically struggled to get any appropriate medical evidence to support their benefit claim(s).

Many of us have no input from either any secondary care level consultants or our GPs and do not have access to a private ME specialist, so we are not having any changes or worsening of symptoms monitored or recorded on our medical records. Personally, I am much more frightened about being under a neurologist with all the FND clinics being set up (particularly across the West Country where I live) than I would be about having my ME/CFS monitored by my GP with a formal ME/CFS Care and Support Plan.

 

[JemPD]

Thanks @Simbindi thats reassuring, i see better what you mean now. I only saw that specialist once (it was Myhill, but she wrote an excellent letter at the time, she wasn't quite so 'out there' then).

It makes sense what you say about the neuro stuff nowadays.

Edited too much personal info

 

[Wits_End]

Yes that's right @JemPD - when you've received the copy of the HCP's report but before you've got the decision if there is anything in the report that doesn't look right then you can write to the Decision Maker but you have to do it fairly quickly.

But you have to actually request the copy of the report, usually a couple of days after the assessment. Unfortunately, I didn't find out about that bit in time, or I might have managed to get some of the inaccuracies corrected before it was too late.

 

[Wits_End]

The new guidelines have separated out the 'Care and support plan' from the 'Management plan'. So you should still have the former even if you decide you don't want the latter specialist input for things like activity management or exercise plans. The former is the one that should be initially done by the specialist service (for people with all severity levels) and then reviewed at least annually by the GP (the latter is monitored under the specialist clinics). That is where the new guidelines put the onus on the GP to at the very least monitor our symptoms. This is what will be important as medical evidence to submit in any benefit claim applications and reviews.

I have to say that I don't remember any questions ever being asked about plans under the old guidelines, and I can't see that things would be any different under the new ones.

 

[meg22]

I don't think I put it quite as politely as that @JemPD as I was pretty fed up by this point and yes I just addressed the envelope to the address in Wolverhampton that I'd sent the form to. I'd written quite a few letters by this point to both the DWP and ATOS as there had been problems with my assessment, all sent special delivery, such that the nice chap in the post office made some comment about how many more letters there was going to be and that it must be costing me a fortune!

This is how I addressed it and the opening paragraph of what I put which was then followed by a number of bullet points giving my reasons as to why I thought the HCP was wrong:

The Decision Maker,
Personal Independence Payment 9,
Post Handling Site B,
Wolverhampton

WV99 1AG


Dear Sir/Madam,

Reference:

With reference to my claim for Personal Independence Payment and the PA3 assessment report completed by ATOS Healthcare, I am writing to you concerning the information and justification in the report on the review period where the HP has indicated that it would be appropriate to review my PIP claim in 3 years stating that ME/CFS is not incurable. I think this is wrong and does not reflect current medical opinion regarding the prognosis of ME/CFS and that the HP should have indicated that there is no requirement to arrange a review of this claim as significant change is unlikely. My reasons for this are as follows:

 

[meg22]

I think if I was submitting a claim for ESA or PIP now I would at the very least include a copy of section 1.17 from the NICE guideline 'Care for people with severe or very severe ME/CFS' with my claim form.

I think that section would help with various descriptors particularly if you have to challenge the HCP report. For example I managed to get a paper based assessment for PIP and had gone into quite a lot of detail about the problems I have with communicating but the HCP wouldn't accept what I'd put on the form at all and gave me zero points for communicating. Hypersensitivity is a particular problem with me as well and they just don't seem to take that into account and how restrictive it is..

 

[JemPD]

I think the problem with issues with communicating & with cognitive dysfunction, (which can be very severe for me, such that even if i could physically leave the house alone it isnt safe for me to do so, because it can come on at a moments notice), is that they will only accpet you have such a problem if the formal dx says you should have. My assessors report repeatedly said 'does not have a dx of cognitive impairment' & 'does not have a dx that would affect communication'.

I havent read the new GL yet, i only have what i remember from the draft, but i seem to remember the dx/symptoms section mentions problems with speech? and is a bit more helpful with comments on cognitive issues than before? Perhaps that will also be helpful. Am not well enough to check it today, in fact i ought to be resting not typing lol, but i'll check at some point.

 

[Simbindi]

I have to say that I don't remember any questions ever being asked about plans under the old guidelines, and I can't see that things would be any different under the new ones.

The HCP doesn't directly ask to see a Care Plan, but rather they may make assumptions about the PWME if they haven't seen evidence of being under a 'specialist' for their ME with the associated documentation of function/prognosis/etc. (which a good care and support plan would cover). They may also not take what the PWME has written about themselves as accurate without seeing some medical opinion on it.

 

[Simbindi]

I think if I was submitting a claim for ESA or PIP now I would at the very least include a copy of section 1.17 from the NICE guideline 'Care for people with severe or very severe ME/CFS' with my claim form.

I think that section would help with various descriptors particularly if you have to challenge the HCP report. For example I managed to get a paper based assessment for PIP and had gone into quite a lot of detail about the problems I have with communicating but the HCP wouldn't accept what I'd put on the form at all and gave me zero points for communicating. Hypersensitivity is a particular problem with me as well and they just don't seem to take that into account and how restrictive it is..

Yes. I would definitely quote the relevant parts of the new NICE guideline in any form I do from now on as I wouldn't trust the HCP to have read them, and even if they had I wouldn't take it for granted that they would grasp the significance of the changes. The DWP directs DMs and HCP to the main NHS website to learn about various medical conditions. As we know, the information under ME/CFS is still very bad so it's very important the ME charities campaign for this to be properly updated.

 

[CRG]

is that they will only accpet you have such a problem if the formal dx says you should have. My assessors report repeatedly said 'does not have a dx of cognitive impairment' & 'does not have a dx that would affect communication'.

I'm not sure if the wording is different for ESA/UC but the guidance on PIP makes it very clear that explicit diagnosis of various bits of condition are not at issue:
https://assets.publishing.service.g...ssessment-guide-part-1-assessment-process.pdf

The assessment for PIP looks at an individual’s ability to carry out a series of everyday activities. The assessment considers the overall impact of a claimant’s health condition or impairment on their functional ability, rather than focusing on a particular diagnosis. PIP is not a compensation payment for ill health / disability; it is to help people with the increased costs of daily living in cases of long term ill health or disability. PIP sits alongside support provided by the NHS and local authorities and is not meant to duplicate that support.

https://www.gov.uk/government/publi...sessment-guide-part-2-the-assessment-criteria

In choosing descriptors, the HP should use their specific knowledge of the health condition or impairment as a measure of the level of disability that would be expected from the claimant's condition.

The part 2 page only refers to diagnosis once and that in relation to incontinence:

There is no requirement for claimants to have a formal diagnosis, but there should be enough evidence to be confident that the reported needs are consistent.

If someone has a diagnosis of ME/CFS then at the absolute minimum both the assessor and the health professional should accept that unless there is evidence to the contrary that the person is affected by all the symptoms listed on the NHS ME/CFS page: https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/symptoms/

Problems with thinking, memory and concentration
If you have ME/CFS, it's also common to have:

• problems remembering certain words, names or numbers
• difficulty concentrating or difficulty focusing on more than one thing at a time
• problems remembering things that happened recently
• being slow to speak or react to things

These problems are sometimes described "brain fog".