Implementation statement in support of ME/CFS diagnosis and management, NICE, draft published for consultation

InitialConditions said:
@Jonathan Edwards are you involved with the NICE implementation plan going forward, or has your involvement finished? I am a little apprehensive that this is being done behind closed doors. I believe on the patient side this is being coordinated by Forward-ME and invovles a service specification that Nina Muirhead started work on.
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I really think that patients should be consulted in service specifications. What are patients looking for from a service, what would be most helpful etc. A survey of patients would be good. I have a suspicion that one of the most important things a service could do is help with benefits - but that is just a guess. Its frustrating that so much gets done behind closed doors.
 
Adrian said:
I really think that patients should be consulted in service specifications. What are patients looking for from a service, what would be most helpful etc. A survey of patients would be good. I have a suspicion that one of the most important things a service could do is help with benefits - but that is just a guess. Its frustrating that so much gets done behind closed doors.
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'I really think that patients should be consulted in service specifications' -On a Suffolk Heathwatch course recently, https://healthwatchsuffolk.co.uk/co-production/, I was advised that this is now a 'mandatory' requirement under the 2014 Health & Care Act!
New Service Specification- over a period of 7 years we did that through robust co production! It's there ready and waiting to drive the new pathway locally.
'A survey of patients would be good' -We did that!
'I have a suspicion that one of the most important things a service could do is help with benefits'- yes it was, but ME Specialst Clinic and provider cut it even though it was part of the contracted service spec! We made a formal complaint but they evaded it......!
 
I'm not sure I'd like the local patients I met some years ago to be consulted over service provision. I suspect they would just say they were happy with the current totally inadequate provision. That's not a criticism of individuals, but I think we here tend to over estimate the knowledge of the majority of sick people who accept that 'doctor knows best'. A bit of kindness and apparent understanding from an OT with some good or bad advice, and they think that's all that's possible.
 
Trish said:
I'm not sure I'd like the local patients I met some years ago to be consulted over service provision. I suspect they would just say they were happy with the current totally inadequate provision. That's not a criticism of individuals, but I think we here tend to over estimate the knowledge of the majority of sick people who accept that 'doctor knows best'. A bit of kindness and apparent understanding from an OT with some good or bad advice, and they think that's all that's possible.
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I agree that characterises some ( like in Sussex!) but we were the proverbial pains in the nether region.... arguing and complaining and refusing them to sign up to NICE in 2007....
I do believe we wore the aberrant PCT/CCG down in the end!
 
Trish said:
I'm not sure I'd like the local patients I met some years ago to be consulted over service provision. I suspect they would just say they were happy with the current totally inadequate provision. That's not a criticism of individuals, but I think we here tend to over estimate the knowledge of the majority of sick people who accept that 'doctor knows best'. A bit of kindness and apparent understanding from an OT with some good or bad advice, and they think that's all that's possible.
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I think even what people want to get out of a service can be really important and putting some of the different things that could be offered and asking what is most important (and are there other things that would be good). The basic service and what can be offered is defined by the NICE guidelines anyway.

I can see things that don't necessarily rely on any knowlegde just asking what possible elements would be most valued.
 
I am on this forum a lot (!) but I would not like to be asked what I want from a service without discussing it here. I need other people to point out problems and meanings because my thinking has deteriorated over the decades.

I remember a piece of research, maybe a service review, that had patient involvement but the patients involved were quoted as saying things like how it was an honour to work with researchers, that sort of thing.

So we do not need any old patient involvement but people who understand the patient or maybe the biological, point of view even if they are not patients. Better to ask Jonathon Edwards or Dave Tuller than me.
 
Letter from NICE today:

Dear Jonathan,


Re: NICE statement on the implementation of the ME/CFS guideline


Many thanks for submitting your comments on the GRIP implementation statement. This is now going through our review and approval process.


We are aiming for a publication date of 12th May. We will be in touch to advise you of any changes to the publication date.


Kind regards,


Cheryl Pace (implementation manager) & Gail Allsopp (interim chief medical officer)
 
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