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Bad news to the MEA from NICE: no review considered necessary

Cinders66

Senior Member
Messages
494
I'm afraid I wouldn't trust AFME to go in lobbying for the complete overhaul we would want.

As it was basically the PACE trial being under question and the USA refining their definition and putting out new guidance etc that got this review even on the cards, I think focusing on these aspects, as well as the American verdict on CBT/GET and Oxford research generally should form the core.

Expecting a lot of those stake holders to promote change is unrealistic but pointing out the selfish, blinkered view of vested interest should help to undermine their influence.

I think going in assertive and positive with the strong case we already have, not already fearing defeat and accepting years more waiting is the way to go. Many other countries Australia, America and Canada have stricter criteria and better guidance. Someone posted on Facebook that the Swedish do too. I don't see why those excellent examples from around the world, and key bits of them can't be highlighted at the presentation.
The harm of NICE critiria allowing weak GETSET research etc, when it's not remotely recognised on the world stage as a criteria should be emphasised too. Patients deserve better and I hope the 25% group at least will highlight just how people are burning whilst this country fiddles.
I want to see the illness recognised as a serious systemic disease, post exertional malaise put at the fore of its definition and exercise put back in a place of great caution and uncertainty based on patient feedback, the weak results from CBT trials and emerging evidence suggesting of serious energy production issues.
 
Messages
2,391
Location
UK
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Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
A weird thing is NICE takes UK evidence more seriously than research from other countries. This seems ridiculous, particularly as UK ME research seems to have lower standards than most other countries!

Some big questions are: who are "the stakeholders"?; who gets to decide who they are?; and will a list of stakeholders be published before the consultation period begins?
The stakeholders aren't mysterious see https://www.nice.org.uk/guidance/cg...algic-encephalomyelitis-list-of-stakeholders4 though this isn't up to date, as I mentioned before ME Action Network UK and Hope should be be on there, so there maybe others who have registered and aren't yet on there.

The criteria is
"
  • National organisations for people who use health and social care services, their families and carers, and the public
  • Healthwatch organisations
  • National organisations that represent health and social care practitioners and other relevant professionals whose practice may be affected by the guideline
  • Companies that manufacture medicines, devices, equipment or adaptations, and commercial industries relevant to public health, e xcluding the tobacco industry
  • Tobacco industry organisations who register to participate are automatically registered as respondents
  • Public sector providers and commissioners of care or services
  • Private, voluntary sector and other independent providers of care or services
  • Government departments and national statutory agencies
  • Organisations that fund or carry out research
  • Overseas agencies with a remit covering England
  • Local or regional groups representing people who work in, or use health and social care services can register as stakeholders only when there is no national organisation that represents the group's specific interests."
https://www.nice.org.uk/get-involved/stakeholder-registration#register

If you know any orgs who fit this, and who would call for a review, please check they've registered. There's still time to do this.

I think going in assertive and positive with the strong case we already have, not already fearing defeat
Yes it is clear that there should be a review so we should be assertive about this.
 
Messages
66
I am struggling to keep up with everything on PR at present, not least because of the debilitating impact of trying to read/think/write coherently about subjects which are deeply concerning and highly emotive.

There is an immense sense of frustration that we, the ME patient community, are repeatedly being misrepresented and mistreated, and possibly misdiagnosed.

It is blatantly obvious that our concerns about the BPS/MUS hypothesis models, the PACE trial and its associated studies and personnel, and their influence on the NICE guidelines and how our illness is being treated are justified, but not being listened to.

It's also blatantly obvious that those connected with these models/studies and associated services are being disingenuous and provocative in the way they are representing and responding to patients, especially when they are supposedly experienced and professionally trained in the care and/or study of sick and vulnerable patients.

This has resulted in a complete breakdown of trust in what they say, and the evidence and care they offer, since it risks detriment/relapse and compromising subsequent care for those who engage.

This statement alone should be enough to justify a revision of the current NICE guidelines, since patient trust is fundamental to the NHS and the provision of healthcare.

The BBC ran this story yesterday: http://www.bbc.co.uk/news/health-40454684 about a mother (Rebecca) who raised concerns with Healthwatch about the care her son received for an unrelated medical issue, but which resulted in changes to the way a health service was provided and huge savings to NHS England.

This extract gives information on what may be a relevant avenue for this community to follow:

Healthwatch England has launched #ItStartsWithYou to highlight the difference patient feedback can make.
The campaign is encouraging members of the public to share their experiences of the NHS - good or bad - to help improve how things are done.

Imelda Redmond, national director of Healthwatch England, said the NHS was "increasingly keen to find out what people are feeding back".

"It can help the whole health and care sector understand what it is getting right and where things need to improve.

"I urge everyone to speak up and help us make the changes we all want to see," she said.

'Listen to patients'

Rebecca's feedback ultimately changed the way services were commissioned - not only in Staffordshire but across England. And in 2014, those processes were rolled out nationally.

"To have not acted would have been to accept defeat," says Rebecca. "I didn't want another family to go through what we did.

"Unless you listen to patients, you can't have a service that meets needs."
 

lilpink

Senior Member
Messages
988
Location
UK
PS I think this subject is off topic and would be far better discussed elsewhere on PR. There have, incidentally, been numerous discussions and explanations as to why we provide a COMPLETE list of all the UK NHS hospital-based referral centres - mainly because we believe that people with ME/CFS should have access to this information and the very clear health warning that accompanies it.

Given what we now know about CBT and GET and PACE, as a patient I'd personally (and this is my independent opinion) prefer to see patient charities clearly marking each centre as being 'CBT/GET based' or not including them at all. The information at your 'Specialist Services' page does include the disclaimer you have posted in your comment, but not every description attached to each clinic is clear about the types of services they offer. Bath for example is very careful (it would seem) not to mention CBT or GET. I appreciate that a comprehensive overview could be useful but I also think that (as I said earlier) the sorts of patients drawn to using this page will be those who have been recently diagnosed and it would be an extra burden for them to try to assess the calibre of these clinics without specific guidance. You imply you very much wish to give 'clear health warning(s)', so would it not be an idea to use an asterisk system at each clinic entry at the very least so that newcomers are provided with the most comprehensive information? This is now wandering slightly off topic I agree.
 
Messages
66
@suseq so is #itstartswithyou a # to use to get the attention of Healthwatch? The health watch orgs are potential stakeholders for NICE.

To be honest I don't have a clue as social media and all things Twitter are a bit of a mystery to me. You could try taking a look at the Healthwatch website: http://www.healthwatch.co.uk/ for more info, but it could be just another quango type set up along the lines of the SMC that's effectively a politicised road to nowhere. However, it was the BBC story that made me think it might be of use, but then that was most probably the aim!

Sorry if it's a non-starter, however, the wider point that patients feed back/experience should be listened to is still very much relevant.

EDIT - Apologies - clear thought gone after first post - on review realise being a potential stakeholder may be a positive thing!
 
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charles shepherd

Senior Member
Messages
2,239
http://www.meassociation.org.uk/shop/management-leaflets/cognitive-dysfunction/


@charles shepherd -cannot find the list of stakeholders on this link as described.

Please could you post the correct link. All I can think of as an individual with ME is to review the list and see if there is anyone I can contact.

Anyone else any bright ideas?


Try this link:

http://www.meassociation.org.uk/specialist-services-throughout-the-uk/

We are constantly updating this info on the MEA website and I think the link changes at the same time…

CS
 

charles shepherd

Senior Member
Messages
2,239
Given what we now know about CBT and GET and PACE, as a patient I'd personally (and this is my independent opinion) prefer to see patient charities clearly marking each centre as being 'CBT/GET based' or not including them at all. The information at your 'Specialist Services' page does include the disclaimer you have posted in your comment, but not every description attached to each clinic is clear about the types of services they offer. Bath for example is very careful (it would seem) not to mention CBT or GET. I appreciate that a comprehensive overview could be useful but I also think that (as I said earlier) the sorts of patients drawn to using this page will be those who have been recently diagnosed and it would be an extra burden for them to try to assess the calibre of these clinics without specific guidance. You imply you very much wish to give 'clear health warning(s)', so would it not be an idea to use an asterisk system at each clinic entry at the very least so that newcomers are provided with the most comprehensive information? This is now wandering slightly off topic I agree.

This is the most up to date link:

http://www.meassociation.org.uk/specialist-services-throughout-the-uk/

The MEA NHS services directory is constantly updated as new information comes in

All of these NHS services offer CBT and GET (although the latter is often closer to pacing than rigid GET) - so I don't think there is much point in tagging each service that provides CBT and GET

CS
 
Messages
2,125
NICE will obviously have to take note of what happens during the consultation with stakeholders

This is a link to the ME/CFS guideline stakeholders list
http://www.meassociation.org.uk/shop/management-leaflets/cognitive-dysfunction/

A significant proprtion of these stakeholders are hospitals and institutions where some of the employment is dependent on carrying out the sort of behaviour management programmes that are recommended by NICE (i.e. CBT and GET)

So it could be argued that there is conflict of interest here….

Other stakeholders include the various Royal Colleges and other institutions that will probably support the 'no update' decision

I fear that we are now fighting a losing battle….

CS
please see this thread:
http://forums.phoenixrising.me/index.php?threads/nice-question-time-basingstoke-19-july-2017.52669/

I would suggest that their (NICE) system is not geared to doing what is best for patients as it states that
"Local or regional groups representing people who work in, or use health and social care services can register as stakeholders only when there is no national organisation that represents the group's specific interests"

which would suggest that smaller representative groups would not be able to register as there are national organisations (eg MEA AfME) ?

But also for those who do/have register/ed as stakeholders, should there not be some kind of vetting?
(IE what exactly is their interest in the guidelines) to ascertain whether it is in the interest of patients.
"NICE's role is to improve outcomes for people using the NHS and other public health and social care services".

I would also question how they(NICE) can on the one hand say they support the definition of ME as 'neurological' and yet the majority of the research that they cite clearly states that it is based on the hypotheses that ME is psychosomatic, and merely deconditioning.
 
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