Suffolkres
Senior Member (Voting Rights)
Or it could be just a case of jobs for the boys ?
Either way, I still need to get a GRIP.
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Implementation statement in support of ME/CFS diagnosis and management, NICE, draft published for consultation
- Thread starter Jonathan Edwards
- Start date
Either way, I still need to get a GRIP.
If I understand correctly they have sent it for comment to those who attended the round table and i believe (but not sure) that they have been getting input from some of the charities in terms of the implementation statement.
Suffolkres
Senior Member (Voting Rights)
I believe as we progress through this new (and unexpected) phase from guideline development to 'Implementation'- GRIP , this document from 2018 is v important and worth scanning through.
The National Institute for Health and Care Excellence is an executive non-departmental public body of the Department of Health and Social Care in England that publishes guidelines in four areas: the ...
Wikipedia
It has certainly 'made sense' of the situation for me.
In 2017- in my response to NICE on whether there should be a review, (for LocalME/ Suffolk Y&PSG/ /Essex MESH etc)...... and they suggested NOT! - I reminded them of their compliance duty to the legislation and quoted that legislation.
I also spoke at Scope of need to adhere to 'Quality Standards' & 'Standards for Better Health' & Care (historic) and the 2014 Health & Social Care Act.
This was reiterated during the Engagement and Scoping Phase and Meetings..........
Reading this 2018 document makes me feel vindicated......
I warned in 2018 Scope - 'It's all very well for NICE to do their guideline- but what about NHS E and NHS.I ........and their legal compliance, moral and practical obligations? Where will the drive and money come from?( NHS E and NHS I hold the purse strings..)
I had no concept, until I read this 235 page doc today, that NICE were also victims of the unraveling of Government changes etc circumstance evolving and 'making this happen' as we merrily jogged along!
I suggested NICE were 'toothless giants'? - I withdraw that suggestion as of today; I feel they have listened , adapted and are firming ' with us, not 'agin' us'!
The National Institute for Health and Care Excellence is an executive non-departmental public body of the Department of Health and Social Care in England that publishes guidelines in four areas: the ...
Wikipedia
It has certainly 'made sense' of the situation for me.
In 2017- in my response to NICE on whether there should be a review, (for LocalME/ Suffolk Y&PSG/ /Essex MESH etc)...... and they suggested NOT! - I reminded them of their compliance duty to the legislation and quoted that legislation.
I also spoke at Scope of need to adhere to 'Quality Standards' & 'Standards for Better Health' & Care (historic) and the 2014 Health & Social Care Act.
This was reiterated during the Engagement and Scoping Phase and Meetings..........
Reading this 2018 document makes me feel vindicated......
I warned in 2018 Scope - 'It's all very well for NICE to do their guideline- but what about NHS E and NHS.I ........and their legal compliance, moral and practical obligations? Where will the drive and money come from?( NHS E and NHS I hold the purse strings..)
I had no concept, until I read this 235 page doc today, that NICE were also victims of the unraveling of Government changes etc circumstance evolving and 'making this happen' as we merrily jogged along!
I suggested NICE were 'toothless giants'? - I withdraw that suggestion as of today; I feel they have listened , adapted and are firming ' with us, not 'agin' us'!
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Arnie Pye
Senior Member (Voting Rights)
@Suffolkres
The link to the pdf file that you've posted twice is pointing at a file on your own PC (or whatever gadget you use). Nobody else can open it.
The link to the pdf file that you've posted twice is pointing at a file on your own PC (or whatever gadget you use). Nobody else can open it.
Suffolkres
Senior Member (Voting Rights)
Sorry, I thought I had used NICE URL...!
The National Institute for Health and Care Excellence is an executive non-departmental public body of the Department of Health and Social Care in England that publishes guidelines in four areas: the ...Wikipedia
Multi-system can mean two different things, in my view.
It can mean either something is wrong with each of the multiple systems themselves. Or it can mean that otherwise healthy multiple systems are having a pathological demand or restriction imposed on them, forcing them to operate outside their normal healthy sustainable limits.
I take the latter view for ME.
It can mean either something is wrong with each of the multiple systems themselves. Or it can mean that otherwise healthy multiple systems are having a pathological demand or restriction imposed on them, forcing them to operate outside their normal healthy sustainable limits.
I take the latter view for ME.
Suffolkres
Senior Member (Voting Rights)
Has an 'official" ..'unofficial" (survey) 'comment'/response been agreed by S4ME committee... and sent?
If so, when can we see it?
Suffolkres
Senior Member (Voting Rights)
https://forward-me.co.uk/9th-february-2022/
'NICE GRIP statement: Finalising the statement is inevitably taking longer than expected and both Nina and Sonya are liaising with Heather Stephens at NICE. The proposed workshops are in contention and more positive patient experiences are required from us.'
https://forward-me.co.uk/12th-january-2022/
NICE – GRIP Statement:
- A draft has been received regarding implementation by the medical community following the revised guidelines, which, on the whole, were empathetic and positive.
- This would involve workshops with relevant stakeholders to clarify changes to managing treatment.
- The draft has recently been commented upon by SG members although further points were made by C Shepherd which are to be forwarded to Heather Stephens at NICE.
- We will include medical insurers for both doctors and patients who potentially have significant influence.
Jonathan Edwards
Senior Member (Voting Rights)
This was the response letter to NICE:
Dear Heather,
Thanks for the implementation document draft. I have consulted with the S4ME committee and would like to convey the following comments:
Much of the implementation statement looks appropriate and we would support. Several issues came to our notice.
1. The section on Educational materials is likely to be contentious and we feel it could be significantly improved. Our suggestions are given in more detail below.
2. The document currently does not convey any sense of urgency for implementation and it is of significant concern that services may not properly implement the guideline for some time without impetus to make changes as soon as possible. This could be addressed to some extent with inclusion of target dates for implementation, a recommendation that local systems publish their own implementation timelines in consultation with commissioners, and with recommendations to consider funding allocations to fast-track implementation, training, and service changes and development, notably given the urgent need to address the historical dearth of adequate or safe care provided for this patient group.
It should be made clear that 'do not offer' recommendations should be implemented without delay (paragraph 4 of p.1 could lead to confusion in this regard). I.e., GET (for example) should no longer be offered, with immediate effect. Clarity could be provided as to how research recommendations will be implemented and whether any of the GRIP member organisations will liaise with NIHR on this.
3. The Lightning Process is misspelt and was not previously recommended so it would be best just to say not recommended.
4. It may be constructive to refer to the list of expertise a specialist team should cover, which is set out at guideline recommendation 1.10.1, and to remind that the guideline did not specify the professions that should make up a specialist team. This may aid providers and commissioners in working towards ME/CFS specialist teams comprised of professionals with a broader and more appropriate skillset, such as specialist nurses.
In developing specialist teams providers should bear in mind that home visiting provision for those severely and very severely affected needs to include medical clinicians who can assess needs for medical treatment, such as specialist nurses, GP's and consultants, not just therapists with more limited skills for whom performing such assessments would mean exceeding the bounds of their professional remit.
5. Under provision of services it would be good to mention aids and adaptions in the context of OT specifically. The mention of access to dietitians with a special interest in ME/CFS is supported by the guideline but may currently be unrealistic due to scarcity. People with severe and very severe ME/CFS will have greater access requirements, (e.g., home visits) so it could be noted this should be factored into funding and capacity considerations.
6. The document could include a paragraph recommending that providers and appropriate organisations update and review their information and literature, including online materials, to ensure that these are guideline compliant, which is to say consistent with the guideline, accurate in representing its content and not misleading in any regard.
Education considerations and resources
In relation to Educational Resources, our view is that it needs to be transparent that we have a current problem with a lack of consensus over appropriate materials. A number of patient support and advocacy groups (including Doctors with ME which is not in any usual sense a recognised professional organisation) have produced materials consistent with the new guideline. Some of the material from these groups is not ideal and we think it best not to highlight anything specifically. The professional organisation for therapists involved in ME/CFS care is BACME. BACME has attempted to redraft its materials in line with the new guidance but some of the background material is not well evidence-based and we do not feel it should be highlighted. Medical Colleges should be updating materials but in view of the way they have dragged their feet in accepting the new guidance this remains an unknown quantity.
What is needed is for patient support groups and all professional groups to get together to provide a consensus on what educational materials should look like. For other conditions this is usually unproblematic. Unfortunately, with ME/CFS, professional organisations seem to have difficulty in accepting the evidence base. In the present state of flux we suggest re-drafting the section on educational materials along the following lines:
“
Education considerations
The medical schools and royal colleges write their curricula in line with the GMC standards framework. All GMC registrants have a professional duty to remain up to date with the relevant areas within their scope of practice. A review of medical education with regard to ME/CFS will be needed, to ensure undergraduate and post graduate doctors have an up to date understanding of the diagnosis and management of the condition.
Education resources reflecting the guidance
Education resources on ME/CFS are currently undergoing rapid change and users should expect to see further changes in line with the guidance. There is an urgent need to develop a consensus between professional bodies and the main patient support organisations. Forward-ME is a coordinating body representing 11 charities and voluntary organisations. A number of them are updating their existing resources and guides aimed at GPs and other healthcare professionals to reflect the updated guideline. Several individual patient support organisations have produced resources to support people with pacing and energy management including Action for ME, the ME Association, and the Wellcome Public Engagement Award Funded Dialogues for ME/CFS. The recently formed Doctors with M.E. has an education page which attempts to collate compliant resources from UK and other global providers. In a survey of users of the linked case based online CPD module, 96.1% thought more education or training for medical professionals on ME/CFS is needed.
“
Yours sincerely,
Jonathan Edwards
Dear Heather,
Thanks for the implementation document draft. I have consulted with the S4ME committee and would like to convey the following comments:
Much of the implementation statement looks appropriate and we would support. Several issues came to our notice.
1. The section on Educational materials is likely to be contentious and we feel it could be significantly improved. Our suggestions are given in more detail below.
2. The document currently does not convey any sense of urgency for implementation and it is of significant concern that services may not properly implement the guideline for some time without impetus to make changes as soon as possible. This could be addressed to some extent with inclusion of target dates for implementation, a recommendation that local systems publish their own implementation timelines in consultation with commissioners, and with recommendations to consider funding allocations to fast-track implementation, training, and service changes and development, notably given the urgent need to address the historical dearth of adequate or safe care provided for this patient group.
It should be made clear that 'do not offer' recommendations should be implemented without delay (paragraph 4 of p.1 could lead to confusion in this regard). I.e., GET (for example) should no longer be offered, with immediate effect. Clarity could be provided as to how research recommendations will be implemented and whether any of the GRIP member organisations will liaise with NIHR on this.
3. The Lightning Process is misspelt and was not previously recommended so it would be best just to say not recommended.
4. It may be constructive to refer to the list of expertise a specialist team should cover, which is set out at guideline recommendation 1.10.1, and to remind that the guideline did not specify the professions that should make up a specialist team. This may aid providers and commissioners in working towards ME/CFS specialist teams comprised of professionals with a broader and more appropriate skillset, such as specialist nurses.
In developing specialist teams providers should bear in mind that home visiting provision for those severely and very severely affected needs to include medical clinicians who can assess needs for medical treatment, such as specialist nurses, GP's and consultants, not just therapists with more limited skills for whom performing such assessments would mean exceeding the bounds of their professional remit.
5. Under provision of services it would be good to mention aids and adaptions in the context of OT specifically. The mention of access to dietitians with a special interest in ME/CFS is supported by the guideline but may currently be unrealistic due to scarcity. People with severe and very severe ME/CFS will have greater access requirements, (e.g., home visits) so it could be noted this should be factored into funding and capacity considerations.
6. The document could include a paragraph recommending that providers and appropriate organisations update and review their information and literature, including online materials, to ensure that these are guideline compliant, which is to say consistent with the guideline, accurate in representing its content and not misleading in any regard.
Education considerations and resources
In relation to Educational Resources, our view is that it needs to be transparent that we have a current problem with a lack of consensus over appropriate materials. A number of patient support and advocacy groups (including Doctors with ME which is not in any usual sense a recognised professional organisation) have produced materials consistent with the new guideline. Some of the material from these groups is not ideal and we think it best not to highlight anything specifically. The professional organisation for therapists involved in ME/CFS care is BACME. BACME has attempted to redraft its materials in line with the new guidance but some of the background material is not well evidence-based and we do not feel it should be highlighted. Medical Colleges should be updating materials but in view of the way they have dragged their feet in accepting the new guidance this remains an unknown quantity.
What is needed is for patient support groups and all professional groups to get together to provide a consensus on what educational materials should look like. For other conditions this is usually unproblematic. Unfortunately, with ME/CFS, professional organisations seem to have difficulty in accepting the evidence base. In the present state of flux we suggest re-drafting the section on educational materials along the following lines:
“
Education considerations
The medical schools and royal colleges write their curricula in line with the GMC standards framework. All GMC registrants have a professional duty to remain up to date with the relevant areas within their scope of practice. A review of medical education with regard to ME/CFS will be needed, to ensure undergraduate and post graduate doctors have an up to date understanding of the diagnosis and management of the condition.
Education resources reflecting the guidance
Education resources on ME/CFS are currently undergoing rapid change and users should expect to see further changes in line with the guidance. There is an urgent need to develop a consensus between professional bodies and the main patient support organisations. Forward-ME is a coordinating body representing 11 charities and voluntary organisations. A number of them are updating their existing resources and guides aimed at GPs and other healthcare professionals to reflect the updated guideline. Several individual patient support organisations have produced resources to support people with pacing and energy management including Action for ME, the ME Association, and the Wellcome Public Engagement Award Funded Dialogues for ME/CFS. The recently formed Doctors with M.E. has an education page which attempts to collate compliant resources from UK and other global providers. In a survey of users of the linked case based online CPD module, 96.1% thought more education or training for medical professionals on ME/CFS is needed.
“
Yours sincerely,
Jonathan Edwards
Science For ME
Forum Announcements
From the committee:
The views expressed by members in this thread were summarised and considered as the letter was drafted by Jonathan in consultation with the committee and guideline group. Although the letter was submitted by Jonathan as the Roundtable participant, the committee endorse its contents.
The views expressed by members in this thread were summarised and considered as the letter was drafted by Jonathan in consultation with the committee and guideline group. Although the letter was submitted by Jonathan as the Roundtable participant, the committee endorse its contents.
Peter T
Senior Member (Voting Rights)
Thank you @Jonathan Edwards and @Science For ME (the Committee) for compiling this clear submission.
Suffolkres
Senior Member (Voting Rights)
Many thanks for this considered response.
Can the letter recommendations and S4ME consensus be discussed outside of S4ME? i.e. with my Suffolk NE Essex Transformation manager draft ME Pathway work?
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InitialConditions
Senior Member (Voting Rights)
@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 involves a service specification that Nina Muirhead started work on.
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Jonathan Edwards
Senior Member (Voting Rights)
I was only involved in the S4ME response to enquiry on the draft.
I agree that it looks as if the NICE GRIP committee is taking this forward with some people from ForwardME. Nina and I seem to be in quite good agreement as to what might be advised in terms of service planning but like you I have reservations about some further process at this stage muddying the waters.
I actually doubt that this implementation document will have any great impact. So I am not getting too bothered by it.