Format of NICE stakeholder meeting?

I have been revisiting the CCC and ICC papers and it makes me wonder if anyone who was involved in the current NICE guidelines ever bothered to read either.

this is the overview of the CCC (2003):
http://www.name-us.org/defintionspages/DefinitionsArticles/ConsensusDocument Overview.pdf
and the whole ICC primer (2012) can be found here:
http://www.name-us.org/defintionspages/DefinitionsArticles/2012_ICC primer.pdf

By comparison the NICE guidelines look more like something EC would come up with after asking the children what they thought.

edit: just realised they couldn't have read the 2012 one:oops:
 
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There is an additional reason it is crucial to get the NICE guidelines right for ME, beyond treatment itself: State penision entitlement.

Entitlement to full state pension, once you reach state pension age, relies on having acquired sufficient NI contributions. For people on disability benefits, if they are on the 'right' benefits, then they will get NI credits, which count towards their state pension entitlement. There are two issues here that come to mind:-
  • It can be much harder for people with mental health conditions to get themselves onto those 'right' benefits. Not sure how that pans out for PwME, but the NICE illness classification will likely have a major impact.
  • Even for those who are able to access the right benefits, they are conditional on showing you are abiding to the NICE recommended treatments, and risk losing them if not, and thereby lose contributions towards state pension.
So for PwME there is a high risk they will not gain entitlement (due to NICE illness classifications) to anything like a full state pension when the get to state retirement age, along with the fact they may be crippled by the NICE recommended treatments long before they get there anyway.
 
Andy said:
A few points made to me elsewhere:
1. Activity management through the use of a heart rate monitor should be encouraged, as it's likely to be easy to underestimate the workload that a patient's heart is under, both by the GP and the patient. Not sure what, if any, supportive research there is for this though.
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I'm sceptical about the value of these sorts of 'management' techniques, at least until there's real evidence of benefit. It could be that this sort of thing is not worthwhile.
 
Andy said:
Received an agenda today:

  1. Welcome and introduction to NICE, Philip Alderson, Clinical Adviser, NICE, 10 minutes
  2. Introduction to the update of the guideline, Mark Baker, Centre for Guidelines Director, NICE, 10 minutes
  3. Introduction to the National Guideline Centre, developer, Norma O’Flynn, Chief Operating Officer, National Guideline Centre, 10 minutes
  4. Introduction to the Public Involvement Programme, NICE, Victoria Thomas, Head of the Public Involvement Programme, NICE, 10 minutes
  5. Group discussion, All – facilitated discussion session in small groups, 1 hour 40 minutes
  6. Closing remarks and next steps, Philip Alderson, Consultant Clinical Adviser, NICE, 10 minutes
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Note the clinical adviser is mentioned there . Clinical advisers are alos members of the GDG according to the Guidelines Development Manual
 
Jonathan Edwards said:
It looks fairly dire. The opening bureaucratic talks will take an hour. There will then be table discussions but it seems there will be no general discussion. Presumably there will just be hurried bullet point feedback from each table, probably from the NICE representatives. It looks a bit nominal as a stakeholder input session but may be better than nothing.
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Here are the past stakeholder comments on the original scope and also mention of what NICE did not include in the original scope . https://www.nice.org.uk/guidance/cg...algic-encephalomyelitis-scope-comments-table2

Pros and cons of what was and was not included in the previous scope and its past and future affects on patients prob a consideration . Stakeholder commmets on the importance of a return to work as important part of rehabilitation and thus the need to include work in the scope , as well as the emphasis on rehabilitation in the remit issued to NICE is alos concearning . Especially as this impacts the use of the psycho social model being used in welfare benifit assessments and psycho social therapies being used which was a concern of the UN , and NICE mentions in other areas of the commmets which are made in in patients defence , that NICE does not advise thr DWP yet stakhokders can share the guidlines with them .NICE says it would evaluate evidence with work as an outcome , yet this outcome is not used or did not show improvement in many studies ? NICE also evaluates treatments on quality of life ? Yet this outcome is not mentioned in the remit issued by the DOH and Welsh Assembly ? Nor is the prevention of iatrogenic PEM . And is not an outcome often used in studies of rehabilitation therapies ? The BMJ best practices mentioned outcomes often missing in these studies . Iatogenic PEM is harm and reduces quality of life of patients
 
Barry said:
Indeed. It might well mean that even if CBT might be applicable for comorbid issues, even standard CBT might be a risk factor for PwME, and might need to be something more bespoke to accomodate much reduced energy availability, and risks of harm.
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Indeed , and the commmets on the past scope mentioned that these interventions of often viewed as rehabilitation
 
Andy said:
If it is able to inform people in pacing efficiently then I think it's certainly something worth considering.
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And certainly will not be a one method fits all. For a lot of PwME, such as my wife, an intuitive approach alone will likely work best. For others, especially more severely affected I suspect, it may also need a more algorithmic approach, maybe with a bit of technology as well.
 
P
Esther12 said:
I'm sceptical about the value of these sorts of 'management' techniques, at least until there's real evidence of benefit. It could be that this sort of thing is not worthwhile.
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If anyone is inclined to try this I would suggest they look at the fb HR monitoring site.

There is so much information there. Just don't give up at the first view. Sometimes it could seem as if a lot of knowledge is assumed. Just ask your questions.

https://www.facebook.com/groups/ME.CFS.HRM/
 
Andy said:
If it is able to inform people in pacing efficiently then I think it's certainly something worth considering.
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The problem with considering HR monitoring is if there is no supporting evidence in terms of research then it should not be in the NICE guidelines. If patients push certain things without evidence other stakeholders will push for their favoured (exercise or CBT) things equally without evidence.
 
Adrian said:
The problem with considering HR monitoring is if there is no supporting evidence in terms of research then it should not be in the NICE guidelines. If patients push certain things without evidence other stakeholders will push for their favoured (exercise or CBT) things equally without evidence.
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This is one of the key points that I think isn't repeated enough (though I think I remember @Jonathan Edwards mentioning earlier in the thread).

I'm sure many of us have our own personal working theory as to what causes ME/CFS. However, too often I see (on forums, social media) those personal theories used as "evidence" of whatever mechanism is at play. The fact is, we do not know what causes this, and we do not know how to fix it. So anything that goes down the line of, for example, recommending antivirals via the NHS because "ME/CFS is a chronic reactivating viral infection" will only end badly for us because there simply isn't the evidence to support the statement, or indeed the dozen others that often come up.

Only one thing is clear - that CBT/GET are ineffective as treatments, and should be removed swiftly as first-line interventions for a serious illness. After that, it seems many things are up to debate, and I would expect that if sufficient patient pressure is applied then hopefully a lot of the management techniques we all use and agree could make it into the NICE guidelines.
 
Dr Carrot said:
After that, it seems many things are up to debate, and I would expect that if sufficient patient pressure is applied then hopefully a lot of the management techniques we all use and agree could make it into the NICE guidelines.
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The trouble is, if we ask to be included management techniques that we find helpful, but for which there is no clinical trial evidence, we open the door for others to claim that CBT and GET are equally good management techniques - after all, the PACE and FINE trials showed no significant difference in long term outcomes for CBT, GET, APT, supportive listening (the FINE trial control group) and standard care.

I'd rather they just said there is no treatment except symptomatic relief for pain and sleep.
If they are going to say anything about management, I'd rather they said clearly that there is no evidence to support the use of CBT or GET.
 
Adrian said:
The problem with considering HR monitoring is if there is no supporting evidence in terms of research then it should not be in the NICE guidelines. If patients push certain things without evidence other stakeholders will push for their favoured (exercise or CBT) things equally without evidence.
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Not disagreeing. My original post on this subject was passing on suggestions made to me elsewhere, and the quote of mine you use was in response to someone else doubting the value of HR monitoring at all. I completely understand that we need supporting research for anything that is suggested.
 
I am grappling with a significant question I wish to have answered by NICE for tomorrow.
I want to know if they are obliged to achieve legal compliance with the legislation, in particular the following;
2003 Health & Social Care Act (Community Health & Standards, ( Standards for Better Health)
2012 Health and Care Act
2014 Care Act
This is what I Googled,
"executive non-departmental public body of the Department of Health compliance with health care acts..."
This is what I found- looks like it might answer my question about who is accountable for harming NICE Guidance!
Any legal beagles out there who are willing to check out the significance of this with me for ME!?
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/215211/dh_132351.pdf

"
  1. Because the Government’s reforms to the NHS and public health will significantly affect the way accountability works, this statement focuses particularly on the period after April 2013, when the majority of the reforms are expected to be in place. Many of the details are therefore subject to the passage of the Health and Social Care Bill, currently before Parliament.

    While the NHS, public health and adult social care are funded and structured differently, and have different mechanisms for accountability, in future, and for the first time, they will all be covered by a consistent set of outcomes frameworks, describing the outcomes that need to be achieved. Collectively, these outcomes frameworks will provide a way of holding the Secretary of State and the Department to account for the results DH is achieving with its resources, working with and through the health and care delivery system.
 
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Andy said:
My guess is that kind of question will be outside the scope of the meeting tomorrow.
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I think I agree with that. NICE are in charge and we are not going to change that tomorrow. They have shown that they may be sympathetic to a major review of guidelines. I think we should take them at their word and stick to the evidence issues that have precipitated this review.
 
In case I am unable to say all that I wish to say at the meeting, I have prepared a 2 sided A4 sheet of points.

I will use this during the meeting to check whether all the points I consider important are covered by someone. Then I intend to leave my sheet with the NICE rep at the discussion table where I end up.

I suspect it may be difficult to get time to say all I would like to say! :P
 
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