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

I agree with most of what has already been said. I actually was underwhelmed with the quality of the UK ME/CFS CPD module - I think it needs some work before it is as helpful as we would hope a CPD course to be. I don't think it should be recommended in its present form (my comment and thread here)
UK: ME/CFS CPD module from Study PRN and supporting podcasts

With my committee hat on, I think the committee and Jonathan needs to discuss how the response is formulated.
Whilst this is not a formal consultation process, we would welcome comment from stakeholders who were represented at the roundtable workshop held last October. Please could you respond on behalf of Science for ME?

Jonathan could reply in his personal capacity, as the person appointed to the Roundtable by S4ME and taking into account feedback here. Or the committee, as the elected representatives of members, might sign off on a drafted response. Given the very short time frame, personally I think trying to draft a response and then have eligible members vote on it is not going to be possible.

I mention this because I suspect that members will have different views on what should be said, not least because we have members who are also members of Doctors for ME. And, for documents that purport to represent S4ME, there needs to be some process for ensuring that they do in fact appropriately represent the views of S4ME members.
 
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On the subject of Doctors with ME, I think we should recommend removal of them as the main source of expertise and perhaps replace with Forward ME. The grounds for saying this could include that they are a new and as yet unproven organisation with mixed quality materials.

I am also concerned that they specify OT's, physios and CBT therapists to deliver services, without mentioning the possibility of specialist nurses, but I guess we lost that battle with NICE who did not take up that recommendation from our submission to the draft consultation.

1.agree DWME comms need big step improvement in quality before we could actively recommend.
2. I think it is worth making the point about specialist nurses again
 
is this document supposed to give covering those areas of the country where the CCGs don’t currently commission any specific services for PWME. Aren’t they going to try to push back? Should they be clear that there should be specific services in every CCG area?
 
Implementation Plan said:
The guideline committee identified three key recommendations for research around diagnostic tests, a core set of health outcome measures to be used for trials of treatments and managing symptoms of ME/CFS, and the effectiveness of the consensus-based diagnostic criteria.
They also made other recommendations for research on the clinical and cost effectiveness strategies for self-monitoring techniques in guiding energy management, sleep management and diet.
There's no indication of how these research recommendations are going to be implemented. For example, is any organisation on the implementation panel going to liaise with NIHR? Or is some other way of funding the research planned?


Implementation Plan said:
Doctors with M.E. is the international professional association for post-viral disease and has a curated education pagewhich includes aggregated and compliant resources from UK and other global providers.
International professional association for post-viral disease? How many members does Doctors with M.E. have, and how many of them are based outside the UK? That's an extraordinary claim. I agree with others that Doctors with M.E. is too young an organisation to be highlighted as a source of information. Given that this is a guideline to be implemented in the UK, I agree that Forward-ME is the most appropriate organisation to provide resources.


The examples of good practice are useful.


There's this - saying the guideline resource and implementation panel reviews NICE guidelines that have a substantial impact on NHS resources (i.e it will cost more than £5 million per year to implement the guideline)
The guideline resource and implementation panel reviews NICE guidelines that have a substantial impact on NHS resources. By ‘substantial’ we mean that:
· implementing a single guideline recommendation in England costs more than £1 million per year, or
· implementing the whole guideline in England costs more than £5 million per year.

Panel members are from NICE, NHS England, NHS Improvement, Health Education England, NHS Clinical Commissioners and when appropriate public health advice and Skills for Care.

And the letter to Jonathan said
These statements are produced following review by the guideline resource and implementation panel of NICE guidelines that have a substantial impact on NHS resources and workforce. P

But, the implementation statement says
We do not expect this guideline to have a significant impact on resources; that is:
...
the resource impact of implementing the whole guideline in England will be less than £5 million per year
So, I'm left wondering why this guideline was reviewed by the guideline resource and implementation panel.

I'm wondering if the point of the document is to effectively create a 'get out of jail free' card for the NHS and other agencies. That is, patients might complain about a lack of promised services, and the implementing agencies will simply point to this Implementation Plan where it says:
[the guideline] makes detailed recommendations which will represent a change to current practice in many areas and will, due to the nature of those changes take the NHS and social care systems some time to implement.
Sure, things take time, but there is no indication of when the changes should be made by. Will it be 1 year, or 5 years or 10 years? Will the next update of the Guideline be noting that really nothing has changed? If it is likely to take a long time, then, given the extreme need that the guideline committee identified, is there not a case for making funds available specifically to various agencies to make the needed changes quickly? Maybe there should be millions of pounds a year made available for a couple of years to develop and deliver training, and help create the new services? I think so.


And there's no mention of Long Covid here. There seems to be an approach of turning away and putting fingers in ears and chanting 'lah, lah, lah' loudly rather than recognising the obvious - that many people are developing ME/CFS after Covid-19 infections. S4ME's attempts to have this acknowledged in the Long Covid guideline, or even just to get ME/CFS mentioned at all in it, have been utterly ignored by NICE to date. But surely any sort of realistic implementation plan for the ME/CFS Guideline has to recognise the elephant in the room? ME/CFS and much of Long Covid are the same things. At the very least, it must be acknowledged that people with ME/CFS and Long Covid need the same sorts of services. It makes no sense whatsoever to develop parallel, separate services.

Do I think NICE and the other agencies involved in making the Implementation Plan will listen to us if we say that? No. But I still think it should be said. (Maybe without the 'lah, lah, lah' bit).
 
Hummmmm, ....as we are embroiled with actual "implementation" already in Suffolk NE Essex, ... it would be wise to alert the CCG Integrated Care System and Transformation Teams & Contracts Commissioning TEams who are organising new contracts NOW... to be aware of this and to use it to guide process....?

We have a trusted and responsible set of NHS officers here so could test the system, but not if they are unaware and being left to work in the dark, surely...?
THis very much strikes me as an afterthought cover our backs exercise..?

Am I right.

Not doing this until March 8th 2022.....( see document properties) is a bit back of a fag packet to me.
To not alert other Stakeholders directly is ill advised and very poor form in my view!

We have been Co producing ( a legal requirement for NHS under 2014 Health & Care Act, according to Healthwatch.....) now for 5 months- post NICE Guidance being published.
 

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Hummmmm, ....as we are embroiled with actual "implementation" already in Suffolk NE Essex, ... it would be wise to alert the CCG Integrated Care System and Transformation Teams & Contracts Commissioning TEams who are organising new contracts NOW... to be aware of this and to use it to guide process....?

We have a trusted and responsible set of NHS officers here so could test the system, but not if they are unaware and being left to work in the dark, surely...?
THis very much strikes me as an afterthought cover our backs exercise..?

Am I right.

Not doing this until March 8th 2022.....( see document properties) is a bit back of a fag packet to me.
To not alert other Stakeholders directly is ill advised and very poor form in my view!

We have been Co producing ( a legal requirement for NHS under 2014 Health & Care Act, according to Healthwatch.....) now for 5 months- post NICE Guidance being published.
I think if you create a copy of the document it sets that as the start date, if you had a rough draft and wanted to keep that for records, you'd create a new copy and work from that (well that's what I do).
 
So, I'm left wondering why this guideline was reviewed by the guideline resource and implementation panel.

It doesn't make sense for the guideline to be reviewed by the panel unless they overlooked significant higher costs than initially considered during development, but that comes across as sloppy on their part.

I'm wondering if the point of the document is to effectively create a 'get out of jail free' card for the NHS and other agencies. That is, patients might complain about a lack of promised services, and the implementing agencies will simply point to this Implementation Plan where it says:

Sure seems handy to be able to do that to large numbers of patients asserting their rights to overdue healthcare provisions NICE effectively created.

Sure, things take time, but there is no indication of when the changes should be made by. Will it be 1 year, or 5 years or 10 years? Will the next update of the Guideline be noting that really nothing has changed? If it is likely to take a long time, then, given the extreme need that the guideline committee identified, is there not a case for making funds available specifically to various agencies to make the needed changes quickly? Maybe there should be millions of pounds a year made available for a couple of years to develop and deliver training, and help create the new services? I think so.

Important points are raised here. Hopefully, NHS and friends will provide timeframes otherwise there is no plan. Just saying things will take time instead of identifying solutions indicates what's likely going on.
 
Not convinced demanding services is a good idea at this point. Or at least it is one fraught with dangers.

Simple shitty reality, that is clearly yet to sink into the medical profession, is that there is currently no explanation and no effective treatment. We don't even have a good handle on basic management yet.* Serious risk that any services will largely be trying to justify themselves in this vacuum.

Be careful what we wish for. Good chance we are going to get more of the same basic approach, just with a different hat on. That is clearly what the BPSers and rehabilitationists are shooting for.

We need to manage our expectations for the short-medium term. Our opponents have not conceded and given up. Quite the contrary, they are regrouping and redoubling their efforts at spin and marketing and political maneuvering. There is a long way to go yet.

(*Beyond that you can't exercise your way to health, and the more you do the sicker you will get. Learn to live with it.)
 
I agree in terms of services re treatment.

However the guideline, according to my memory, had a whole host of things about other services, of us getting parity with other conditions, things like getting appropriate social, acre, and financial support.

Implying that the current discrimination against ME and pwME, by the state and its institutions, should stop.

The financial implications, relative to any notional additional costs to the NHS (which as there is no treatments I would expect to be low), seemed potentially vast, as most pwME seem to get squat, relative to pwMS or pw stubbed toes.
 
Moved posts

I received this from NICE:

Dear Jonathan


You will be aware that following the roundtable workshop held on October 18th 2021, which you attended on behalf of Science for ME, Gill Leng, in summing up, stated that NICE would work with system partners and stakeholders to explore:


  • Issues around commissioning of services
  • Identifying training materials
  • Examples of good practice from the patient perspective.

I am writing to advise that we will be sharing an implementation statement with the attendees from the workshop, for comment, next week. This is not a formal consultation.


We are hoping to send you the statement by 5pm on Monday 14th March and would ask that you send any comments by noon on Monday 21st March.


Following input from stakeholders the statement will be presented to the guideline resource and implementation panel (membership from NICE, NHS England and NHS Improvement, Health Education England and, if appropriate, a public health perspective and Skills for Care), for final approval and it will then be published alongside the guidance.


Very kind regards


Heather



Heather Stephens

Senior Health Technology Adoption Manager
Have S4ME finalised their comments to be submitted by Jonathan?

I am a bit confused as a NICE Stakeholder independent of S4ME...
I was told elsewhere the Implementation Statement draft was 'confidential' and could not be shared or responded to.
As I was not advised of it as a formal stakeholder, what can or can't I do?
Please enlighten ME!
 
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Is this what it is all about?

file:///Users/barb/Downloads/agenda-and-papers-march-18-1.pdf

Adoption and impact March 2018

75.Implementation:

NICE guidance and advice needs to be effectively implemented to have any impact on the health and wellbeing of the population and the quality of care provided. Our job is to produce what is needed,when it is needed and then do all we can to encourage and support those who are in a position to apply it. This is a complex, challenging task for which an understanding of the evidence for effective ways of overcoming obstacles is an essential prerequisite. There is a growing body of research evidence and an accompanying literature on not merely what change is desirable in health systems but how to achieve it so it is embedded and sustained. It is possible that the messages about how to effect change may not be getting across to policy-makers and managers in ways which help them or in terms they find useful. NICE needs to be both a user of, and contributor to, the evidence on how to effect large-scale transformational change in complex health systems.To facilitate this process, NICE has an ongoing programme of implementation support to encourage the uptake of guidance and quality standards, including tailored advice for the sustainability and transformation partnerships (STPs).

76.The implementation strategy has five specific objectives. To:produce guidance and standards that are fit for the audience’s needsensure relevant audiences know about the guidance recommendationsmotivate and encourage improvementhighlight practical support to improve local capability and opportunityevaluate impact and uptake.

77.NICE has an Implementation Strategy Group comprised of academic leaders in the field of health, care and social science and public involvement who help us to achieve the aims of the implementation strategy. The group advises on new areas of implementation science and engaging with the research community to stimulate evaluation of significant areas of implementation and improvement science to inform our work.

78.NICE provides or endorses relevant implementation support products for a range of purposes, including support for commissioning, support for service improvement and audit,and support for education and learning, all with the aim of making implementation more straightforward at a local level. Some examples of support from NICE include the web based ‘Into practice’ guide for organisations on how to put evidence into practice,a forward planner updated monthly to summarise our future work programme, provide indicative costs and highlight links with the tariff, and a Local Practice Collection which includes Shared Learning examples and Quality and Productivity case studies on the NICE website.

79.We also have a regional field team that provides practical support and advice to NHS trusts, Academic Health Science Networks, CCGs, local authorities, social care providers, sustainability and transformation partnerships, and accountable care organisations and systems, particularly in relation to effective processes for implementation and information about NICE. During 2018-19 we will continue to align the work of the field team where relevant with the regional structures of NHS England and Public Health England along with prioritised local engagement activities. This will continue to facilitate a strategic approach of working more closely with partner organisations, and of using new technologies such as webinars, to increase the team’s impact.

80.We also have an active programme of strategic engagement at a national level, as well as locally and regionally. The focus of the national level programme is to ensure that the evidence base as set out in NICE guidance and quality standards is embedded inactivity with relevant third parties. Progress in engagement and its effect on the use of NICE guidance and standards will be reported against standard metrics and regular uptake reports. This will also include information that NICE has about how our recommendations for evidence-based and cost effective care are being used
 
I am a bit confused as a NICE Stakeholder independent of S4ME...
I was told elsewhere the Implementation Statement draft was 'confidential' and could not be shared or responded to.
As I was not advised of it as a formal stakeholder, what can or can't I do?
Please enlighten ME!

I had no message about confidentiality.
 
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In 'V for Vendetta', ...... 'This veritable vichyssoise of verbiage veers most verbose....' my husband says, (surely) the most appalling and abysmal avalanche of alliteration....

As for 'an extended session of imbibition of alcohol in a fermentation plant I cannot see the point of any of that verbiage." .... comes a close second!
 
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