Format of NICE stakeholder meeting?

Keela Too said:
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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I too have prepared "one I did earlier"- 3 pages!
I suggest we also send them electronically and request written replies formally to any points not raised or covered tomorrow?

This morning I have come across some useful background material about compliance and accountability.........DH Accounting Officer's System Statements ( 21012 and 2017) This may inform as to what can be done when those responsible abdicate responsibility for delivery, for delivery and ensuing harm, and what rights we have to hold to account.
 

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Keela Too said:
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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Sally, I would be happy to share my final 3 pages with your two so we know we may be singing from the same hymn sheet.....? let me know. (my 3 pages sits alongside my submissions in both March, -via 125% group response to NICE Intermediate Care and reablement and my July response to the review for CG 35 consultation)
 
Trish said:
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.
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this is where categorising techniques would be useful - so it will be highly unlikely that cbt/get will disappear. So if they have to be mentioned then it would be betterto put caveats with them ie they coukd help with management, they are not treatments for the actual disease, they should only be used with mild cases (if at all)
 
Suffolkres said:
Sally, I would be happy to share my final 3 pages with your two so we know we may be singing from the same hymn sheet.....? let me know. (my 3 pages sits alongside my submissions in both March, -via 125% group response to NICE Intermediate Care and reablement and my July response to the review for CG 35 consultation)
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About to travel. Computer packed. I’ll back online tonight.. I hope
 
Further down the line it may also be worth looking back at the legal challenge that was mounted after the last guideline was put in place. To see what issues came up so that we could keep an eye out for anything similar happening this time adtry to preempt/ deal with in case it doesnt go to plan and there was a complaint process afterwards.
 
Sbag said:
Further down the line it may also be worth looking back at the legal challenge that was mounted after the last guideline was put in place. To see what issues came up so that we could keep an eye out for anything similar happening this time adtry to preempt/ deal with in case it doesnt go to plan and there was a complaint process afterwards.
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From what I remember and what i'm checking through now, the legal challenge would be different this time due to changes in status of NICE since then, 2005 and in 2013, and to the new legislation and hierarchy of accountability and responsibility,

2012, 2014 and recently Accounting Officer System Statement July 2017 under heading of "Devolution" -
Devolution"
  1. 4.28 The Cities and Local Government Devolution Act 2016 creates provision for the devolution of health and social care delivery to local and combined authorities, to allow a place-based approach to delivery of these services.""
Accountability for all providers

All providers are primarily accountable to their patients, and to commissioners, who hold them
to account through contracts for the services they deliver. This is the main way of ensuring that
providers are delivering high quality services that provide value for public money.
In addition, there is a system of independent regulation for providers, which will be further
extended by the Health and Social Care Bill:
 
We can all relax, AfME are on the ball and were addressing the big issues at the meeting....
Action for M.E. are attending a National Institute of Health and Care Excellence (NICE) meeting today to inform the scope of the updated NICE guideline on M.E.

The NICE guideline offers guidance, information and advice for health professionals and practitioners, and is being reviewed in light of evidence submitted to NICE by stakeholders in 2017, including Action for M.E. and other patient organisations.

The meeting is the first stage in the review process for the NICE guideline, and stakeholders have been invited to consider what topics ought to be included in the updated guidance.

Clare Ogden, Head of Communications and Policy at Action for M.E., is attending and will be highlighting the importance of including patient-reported evidence in the guideline. Currently, the guideline prioritises evidence from randomised control trials. Patient surveys have indicated that the treatments recommended in the guideline, cognitive behavioural therapy (CBT) and graded exercise therapy (GET), can worsen the symptoms of some people with M.E.

Once the scope of the new guideline has been finalised, a committee will be established which will be responsible for developing the review questions, reviewing the evidence relevant to the guideline, and drafting the proposed new guideline. Stakeholders will be consulted again on this draft before the guideline is finalised and published. NICE expect this process to be completed by October 2020.

Action for M.E. will continue engaging with NICE as the guideline is developed, and will post updates to share any information going forward.
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https://www.actionforme.org.uk/news/nice-guideline-action-for-m.e.-attending-scoping-meeting/
 
Clare Ogden, Head of Communications and Policy at Action for M.E., is attending and will be highlighting the importance of including patient-reported evidence in the guideline. Currently, the guideline prioritises evidence from randomised control trials. Patient surveys have indicated that the treatments recommended in the guideline, cognitive behavioural therapy (CBT) and graded exercise therapy (GET), can worsen the symptoms of some people with M.E.
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Ignore the large patient-reported bump under the rug (coughPACEcough)
 
Inara said:
Is it good they are involved with NICE? Can they be trusted?

Edit: Ah, I see @Skycloud answered it in part :)
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Broadly speaking, yes it's good they are involved in the stakeholder meeting as they represent a lot of patients. Broadly speaking, do I trust them to be of any use? No.

With this statement, they seem to be demonstrating that they are, at least, one step behind in addressing the issues surrounding the guidelines. Before a review was announced, we would have counted getting patients concerns taken into account in regard to treatments offered as a win. Now that an actual review is taking place, this is the opportunity to address the fact that the research actually shows that CBT and GET have no actual evidence base for being effective treatments, so getting rid of them as treatments offered is the most important thing to achieve. So AfME are pursuing a limp "you have to listen to the patients" line, instead of "look at the long term research evidence, CBT & GET don't do anything for people with ME so lets get rid of them" line.
 
@Andy-do you know if AfME is sending a patient rep to the meeting, or is Clare Ogden the only representative? I think stakeholders were allowed 2 places but they only name Clare.
I filled in a note from a NICE form to ask for names of MEA reps and the other place but no response. Anyone know?
I imagine Charles Shepherd is one rep for the MEA.

EDIT: crossposting with Andy.
 
Binkie4 said:
@Andy-do you know if AfME is sending a patient rep to the meeting, or is Clare Ogden the only representative? I think stakeholders were allowed 2 places but they only name Clare.
I filled in a note from a NICE form to ask for names of MEA reps and the other place but no response. Anyone know?
I imagine Charles Shepherd is one rep for the MEA.

EDIT: crossposting with Andy.
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In regard to AfME, I only know what that statement tells us. Stakeholders were allowed to nominate two representatives, but due to S4ME applying at the last minute we couldn't find a second to represent us in time (I know you didn't ask about that bit but thought I'd add it in).
 
Thanks @Andy

Have just been checking the charities' fb pages re the NICE meeting. AfME statement is as above: there wasn't one on MEA page. CS must be there?? Wonder if there is a second rep

I know Invest in ME have written to Mark Baker at Nice. I don't know if they are attending. Anyone?

http://www.investinme.org/IIMER-Newslet-1801-01.shtml


I believe there has already been a reply and counter reply.

EDIT: I don't actually know if CS is there but I assume he will be.
 
Andy said:
We can all relax, AfME are on the ball and were addressing the big issues at the meeting....

https://www.actionforme.org.uk/news/nice-guideline-action-for-m.e.-attending-scoping-meeting/
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“can worsen the symptoms of some people with M.E.” really ? Workwell Foundation said to totally do away with GET , graded aerobic exercise and that impaired aerobic system and oxygen utilisation applies to all levels of severity and uses to stratify severity . IOM report mentioned the harm of Exertion .

There’s is no place for GET and the special for of CBT to challenge illness behaviour for any adult or child with ME , which is a metabolic disease with impaired energy metabolism .

Why are Magenta partisipants and Fitnet participants then told their is no risks ?
 
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