small advocacy project: replacement for CFS/ME clinic patient manual

NelliePledge

NelliePledge

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hi all on the thread about GET being camouflaged as pacing we were looking at the actual patient handbook that the NHS CFS/ME clinics use nowadays

At post #52 on the thread on this page https://www.s4me.info/threads/re-framing-get-as-pacing-or-vice-versa.4030/page-3 (sorry couldnt work out how to link to a specific post) I suggested it might be doable to do an overhaul of the manual to present an alternative, patient generated version to the NICE guidelines committee.

@JaimeS and @arewenearlythereyet have so far expressed an interest in getting involved in working on this if people think it is a worthwhile thing to do.

Im reposting here a link here to a version of the manual currently in use (they don't differ substantially from clinic to clinic) but please be warned this is BPS stuff so it has much that will make you angry https://www.ecch.org/media/16119/me-ot-pack-sept-2017.doc

My proposal is, over the next couple of months, to create a replacement patient manual which would be positioned as substituting directly for the existing one. It would be recognisable to CFS/ME clinic staff as it would cover largely the same subject areas. However no content would simply be lifted into the new document. It would all be either fully edited to remove lets call it "outdated terminology" or, where a complete rework is needed, new material would be created based on content by patients that already exists - about pacing for example.

The hope is such a product would be seen by NICE committee and indeed the CFS/ME clinics as positive, helping things move things on beyond the current situation. We would be highlighting that there is a demand for support from the NHS by ME patients, that there is information that can be imparted to patients in a non judgmental approach that will not cause harm and may help, particularly newly diagnosed patients.

Please share any thoughts you have on this idea:
- whether it is a useful activity and worth people spending some energy on or if you think it is not going to be worth the investment

- if it goes ahead - if you would be interested in working on edits/rewrites to part of the document or acting as a reviewer
 
Great idea in theory, and I don't want to pour cold water, but until the NICE guidelines change, I can't see any clinic being prepared to abandon their current practices.

I wish you well, and hope I'm proved wrong.


I'd like to get rid of the psychologists, OT's, physios, etc. who run these clinics, and replace them with:

1. A consultant physician who keeps up to date with current ME research and with best practice in diagnosis and symptomatic treatment, and who sees every patient once a year.

2. One or more specialist nurses who
a) supply every patient diagnosed with ME with a pulse and heart rate monitor and information on how to use it for pacing, and provides support for the patients learning to use this and monitors their progress,
b) can advise on symptomatic treatments
c) helps with any other problems that arise, including dealing with employers, social services and benefits agencies.

That's the model of service a friend with Parkinsons' disease is offered. It seems to work pretty well.

Edit: I may have misunderstood your purpose - is it to actually offer the new patient booklet to clinics to use instead of their present one, or to demonstrate to NICE an alternative version?
 
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May need to tread carefully around UK ME politics while the NICE guidelines are being reviewed? They are making noises about wanting to hear patient input so there could be a way to channel this into the process?

The other thread was too much for me to read so I don’t fully understand.
 
Trish said:
Edit: I may have misunderstood your purpose - is it to actually offer the new patient booklet to clinics to use instead of their present one, or to demonstrate to NICE an alternative version?
Click to expand...
@Trish I think it would be highly ambitious to achieve any sort of movement from the clinics until the new guidelines are completed as they have the shield of the NICE review to bounce suggestions for change off. (Unless of course NICE do take on board the questions over GET and issue a warning).

I thought that it could be helpful to show NICE and the guideline committee an alternative product that steps away from what CFS/ME clinics are doing now but, bearing in mind the politics of all this, keeps whatever elements can be used. It wouldnt be anything as full on as a proposal for the structure of the service, roles and the whole service that would be delivered as there has been work done on that already by the Suffolk folk for example. It would just be focussing on what this manual could look like.
 
NelliePledge said:
@Trish I think it would be highly ambitious to achieve any sort of movement from the clinics until the new guidelines are completed as they have the shield of the NICE review to bounce suggestions for change off. (Unless of course NICE do take on board the questions over GET and issue a warning).

I thought that it could be helpful to show NICE and the guideline committee an alternative product that steps away from what CFS/ME clinics are doing now but, bearing in mind the politics of all this, keeps whatever elements can be used. It wouldnt be anything as full on as a proposal for the structure of the service, roles and the whole service that would be delivered as there has been work done on that already by the Suffolk folk for example. It would just be focussing on what this manual could look like.
Click to expand...

It probably would be helpful. NICE has said it will include patient evidence because research is so poor in this area. A document created by patient consensus with a critical, scientific eye would be helpful to add into the mix.

That said, things like the 2014 IACFS primer will undoubtedly also be looked at, so it may be more useful/efficient to compile existing resources rather than spend all your energy making new ones. But don't let me put you off, because I know I'd use it if I were on the GDG as a lay rep.
 
It might be worth doing anyway for the benefit of new patients, regardless of what happens with NICE - i dont know about that, as long as we're sure there isnt something good already in use... has the MEA pacing leaflet been looked at i seem to remember it being quite helpful? and there was also a good pacing guide written by Ellen Goudsmit some time ago http://www.wames.org.uk/pacingweb.pdf which was great IIRC. I too foggy to re-read it at the moment.

If people do decide to do it i'm happy to offer proof reading (energy level at the time depending). I quite enjoy it.

For some reason I seem to be quite good at spotting errors in (other people's) written text - grammar, spellling, sentence structure etc, that i cant spot in what i've written myself (until enough time has passed for it to become unfamiliar).

I think since the cognitive difficulties arose, anything not quite smooth, accurate & grammatically correct in a text, really glares at me & trips me up, in a way that i possibly used to just absorb when i was well. I'm also a bit of a pedant lol.

So while i wouldn't be much good at writing the new guide from scratch, I think i could offer constructive help in proof reading near-finished drafts if that would be helpful. Sometimes fresh eyes can spot things not obvious to the author.
 
Thanks for comments so far

Here are the section titles

Activity management

Rest and relaxation

Analysing activity and energy conservation

Goal planning

Role of stress

Thoughts feelings and behaviour- challenging negative thinking

Sleep

Dealing with memory and managing diet

Illness and other people

Dealing with setbacks

Moving forward and summary

It’s a good point about whether there is something already existing rather than reinventing a wheel. I think there are places online where people can get useful information covering (to the extent that you would want to) these areas. I’m not sure there’s one place you could just say to NICE this is what NHS should be covering in their sessions.

AFME have some booklets but I already identified the CFS clinics seem to have had a substantial role in those so there are issues. I’ve not seen everything MEA have on these topics as you have to buy them and as a newly diagnosed person I relied on the free AFME stuff. But I will look into the MEA content. There is the CFIDS website in the US which has some good stuff but I’ve not reviewed the whole thing. Also I think I saw that Dr Montoyas clinic have some guidance. Etc etc.
 
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