Format of NICE stakeholder meeting?

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.

 

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)

 

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)

 

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.

 

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....

https://www.actionforme.org.uk/news/nice-guideline-action-for-m.e.-attending-scoping-meeting/

 

I always confuse the organizations. Was Action for ME the one who contributed to Crawley and PACE? Or was that Association for ME or...?

 

Ignore the large patient-reported bump under the rug (coughPACEcough)

 

Yes, that was Action for ME.

 

Is it good they are involved with NICE? Can they be trusted?

Edit: Ah, I see @Skycloud answered it in part

 

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.

 

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.

 

There are links to two further letters, the reply from Mark Baker, and counter reply from IiME, on the front of the letter in the previous post.

 

Quite a positive feel about the meeting but also some other thoughts - which I will post when I get sorted - tonight or tomorrow.

Once people dispersed I left after sharing with Charles Shepherd 'cautious optimism'.

 

I also felt cautious optimism .

 

“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 ?

 

Watch out- that often lulls you into a false sense if security...from the other post re liME letters, confirmation bias and cognitive dissonance are still alive and well