UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

I have only had a quick skim of the main document. It seems to be encouraging.

There seems to be a clear message that if you are someone who thinks there were 'anomalies' in the NICE Guideline procedure, it might do to think again, ducky.

 

Had the same impression.

In my view, the main problem lies in the medical and research community and there is a limit to what governments and politicians can do to fix it. But the initiatives suggested in this document all seem quite useful even if they are unable to address the root problem.

 

For those who are having difficulties in reading the whole text, I suspect that section 5 is the most important one as it presents the suggested actions to take:

5. Agreed actions
To address the problems identified and achieve the impact proposed by our stakeholders, we have agreed the following actions.

Research
The UK Clinical Research Collaboration (UKCRC) Research Working Group has committed to rapid actions which will provide the foundation of evidence generation and insight into the medium and long term actions. These actions started in December 2022, with planned delivery before spring 2024. In parallel, the group will identify a plan for future actions and a sustainable legacy.

1. The Department of Health and Social Care (DHSC) will support the Research Strategy subgroup to hold workshops with funders, academics and people with ME/CFS on how to develop research questions to respond to the PSP Top 10+ priorities and initiate new clinical studies.  This will help increase research funded in this area by bringing new and existing researchers to the field to discuss feasible, clear and meaningful research applications.

2. DHSC will work with research funders to commission a landscaping review of national and international work underway in ME/CFS, map PSP research priorities against these and establish evidence gaps. This will enable researchers to target proposals at identified gaps and funders to consider which are most needed.

3. The Medical Research Council and the National Institute for Health and Care Research will raise awareness of research funding opportunities for researchers and highlight the PSP Top 10+ ME/CFS research priorities publicly and with decision-making bodies. This will provide further guidance to researchers, including those new to the field, as to how to find and apply for funding in a competitive process. Raising awareness of the PSP Top 10+ priorities will emphasise the value of those priorities to researchers, those involved in funding decisions, patients and the public to enable high-quality applications to be prioritised for funding.

4. As part of the Research Working Group, a charity and patient group collaboration will support funders to raise awareness of mechanisms for effective patient and public involvement and engagement (PPIE) in research, ensuring diversity across protected characteristics, geographical areas and severity and duration of disease. This will increase the co-production of research, ensure proposals are informed by personal experience, targeted to patient need, and increase competitiveness of proposals for funding.

5. DHSC will support the Research Working Group to develop case studies of research that show good practice, including effective PPIE. This will show exemplars to researchers and funders to improve future the research application and review process.

6. DHSC will support the Research Working Group to engage with the initiatives to educate clinicians and practitioners about ME/CFS (for example, the NHS England e-learning module to be developed on ME/CFS). This will ensure that researchers, researcher clinicians and research funders are supported to engage with new educational resources on ME/CFS.

Attitudes and education of professionals
7. DHSC will consider how to increase our knowledge of public sector professionals’ current attitudes towards ME/CFS, to help show where there are gaps in understanding that need to be targeted - by September 2024.

8. NHS England will develop an e-learning module on ME/CFS, which will be aimed at professional staff working in health and social care services but can also be accessed by other professionals and members of the public. The development process will involve a range of stakeholders, including professionals and people with personal experience of ME/CFS - by end March 2024.

9. NHS England and the NHS Health at Work Network will update their webpages on ME/CFS - by end March 2024.

10. On education about ME/CFS, DHSC will:

• ask relevant stakeholders to consider developing a shared learning resource (such as case studies or videos) on ME/CFS which could be held in an education hub, as a central resource for education and training purposes, by the end of March 2024
• request that the Medical Schools Council encourage shared learning and the NHS England e-learning package on ME/CFS to all UK medical schools and encourage medical schools to provide undergraduates with direct patient experience of ME/CFS, to raise awareness among medical students, by the end of March 2024
• use its networks to raise awareness of the new NHS England e-learning module on ME/CFS once completed and to encourage stakeholders to do this also along with the updated NICE guideline on ME/CFS (NG206)

11. DfE will:

• encourage special educational needs and disability (SEND) and medical condition organisations to signpost the NHS England e-learning on ME/CFS on their websites, once completed in 2023, so that staff who interact with those with ME/CFS in education can access it
• update the guidance on education for children with health needs who cannot attend school - primarily for local authorities - in 2023, to make clear the role that home schools play to deliver education to pupils with health needs and the duty of local authorities to arrange suitable education where the home school is unable to (the home school is the school at which the child was on roll before their health needs impacted upon their education)
• share guidance developed by Action for ME, informed by views of children’s social care professionals, with wider children’s social care professionals, by the end of March 2024
• signpost e-learning on ME/CFS, once developed by NHS England to providers

DfE has already updated remote education guidance to provide more information on the circumstances under which remote education should be considered, after it has already been established that a pupil is, or will be, absent from school

12. The British Association of Social Workers will support and promote the work of stakeholders to raise awareness and knowledge within the social work profession, about the needs of people with severe and very severe symptoms of ME/CFS, including unpaid carers, for example by sharing case studies, publishing articles and circulating guidance, by the end of March 2024.

13. The General Medical Council will include ME/CFS in the scope of the Medical Licensing Assessment that will be launched in 2023.

14. The Royal College of Physicians will ensure that their training on ME/CFS keeps pace with research and guidance in the core postgraduate training for primary and secondary care physicians, by the end of March 2024 and ongoing.

15. Healthcare practitioners from across disciplines and people with personal experience will come together to produce a ‘Language matters in ME/CFS’ guide to further the learning and insights gained from the interim delivery plan process. This will support both professional and patient understanding of effective use of language in the context of ME/CFS, while an aligned document will help people with personal experience get the best from their consultations. The work will be led by an independent clinician, supported by a DHSC secretariat, by the end of July 2024.

Broader actions to improve awareness and understanding
16. DHSC will collaborate with stakeholders to:

• increase awareness among people with ME/CFS and their unpaid carers of support available from adult social care and how to access it by collaborating with stakeholders to disseminate information and guidance (adult social care services), by September 2024.
• increase awareness among people with ME/CFS and their unpaid carers about how to feed back or make a complaint about care, treatment or service they have received by sharing information about their rights under the NHS Constitution and how to navigate the NHS complaints process (health services), by the end March 2024
• identify how best to raise public awareness of ME/CFS, by the end of March 2025

17. DHSC and DWP (where appropriate) will work with stakeholders to disseminate information and guidance to increase awareness among all disabled people, people with health conditions, employers and relevant organisations of support available and how to access it, by September 2024.

Improving statutory support
18. The Law Commission will review existing social care legislation relating to disabled children, to improve clarity for families about the support that they are legally entitled to, ensuring that local authorities know what they are expected to provide, and families know how to access support - timescale to be determined.

19. DHSC will work with stakeholders to consider how to better support health commissioners and providers to understand the needs of people with ME/CFS, what local service provision should be available and how existing national initiatives to improve accessibility of health services can be adapted or best utilised for people with severe or very severe ME/CFS - by July 2024.

20. DHSC will engage stakeholders to discuss timely diagnosis and support for children who have ME/CFS and their families as well as best practice in relation to safeguarding responsibilities - by July 2024.

21. DWP is committed to making its services easier to access for everyone, irrespective of their condition. How this will happen is set out in Transforming support: the health and disability white paper, published in March 2023. People with ME/CFS, as well as other people with disabilities, will benefit from the changes underway, which are intended to:

• make it easier for people to apply for benefits
• improve people’s experience of assessments by exploring ways to simplify the claim and assessment process to improve transparency, support greater understanding and increase trust in the system
• look at ways to enhance assessment expertise
• improve the information provided about benefits and the application process
• improve how evidence is used
• reduce unnecessary assessments

 

In my opinion to change healthcare provider attitudes it's important to teach them that the CBT/GET paradigm was wrong. The negative attitudes stem in large part from the idea that patients are kept in a state of disability by their own thoughts and behaviour. That's the message of the CBT/GET paradigm. When the patients refuse CBT/GET or withdraw from it, this is interpreted as patients not having the motivation to get better, which is despicable in the eyes of healthcare providers who believe patients could recover if they put in more effort. To quote an anonymous nurse from the FINE trial "the bastards don't want to get better".

Not all tensions between patients and doctors arise from the CBT/GET model but it's hard to believe that it didn't play a large part in the situation getting so bad.

To best change healthcare provider's views, it needs to be said plainly that the CBT/GET paradigm was wrong, and also explain why so that it is convincing and rational.

 

Who at NHS England will be responsible for the content of this? They have not been good on various matters re: the pandemic, and SW is on the board now.

Additionally will the NHS website ever be updated appropriately in line with the actual content of the NICE guidance? Is this what is meant by the NHS England webpage or is that something else? The NHS one was the top result when I searched for it.

I'm glad this was published today; it's at the point where you stop expecting anything to happen when anyone says it will!

 

quite; I don't see why they (ie NHS England) can't do it now; NHS Scotland have.
Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) | NHS inform

 

can someone put this into understandable language.

eta: which charity? I'm guessing AfME again.

 

It is an interesting question but if my experience with the working groups run by the Department of Health is anything to go by things have changed in a way that cannot really be reversed. There are two options for an e-learning module. One starts out like the NICE Guideline. The other starts out "Chronic fatigue, sometimes called ME, is best viewed as a biopsychosocial problem...". I do not see any way that a working party with patient representatives is going to come out with that.

The thing is that the BPS people, most recently in their "Anomalies in the NICE..." paper have shown that they want to stick to believing that the earth is not just flat but completely flat. Even the idea of changing diagnostic criteria is anathema. It is a bit like saying we want all fourth formers to go back to learning Latin.

I can see that there is a risk that things will be watered down and glossed over but if the BPS people are so intransigent there isn't that much room for them to negotiate a fudge. The absurdity of their claims came out at the Round Table. If they say that nobody does GET like that these days anyway they are simply admitting that their current approach is totally without evidence. They dig themselves into the ground. And in an e-learning module that tends to show.

Moreover, in a sense the BS position is that ME/CFS doesn't even exist, so how could they devise a module for it?

I may be wrong but I have a feeling they have painted themselves into a corner now.

 

I cannot work out quite if this is the Research Working Group I sit on. I guess it may be. There are several charities involved. The Groups I am involved with are entirely 'on message' as far as the S4ME position goes. The differences of opinion are entirely about the best way to push forward biomedical research and evidence based care.

 

You could be right. I just thought I’d share some historical observations.

Peter White was saying hardline things on the CMO Working Group (published in 2002) (the sort of comments he made on the draft 2007 NICE guidelines: https://meagenda.wordpress.com/2007...g-the-nice-guidelines-for-cfs-me-tom-kindlon/ ). I learned about them from someone on the committee before they were told the Official Secrets Act applied and nothing should be talked about with people not on the committee. Lots and lots of things were watered down to try to keep the BPS crowd on board. After getting all the concessions they could, the BPS crowd still resigned.

With the Task Force Services report in 1998, a model for services was designed by a team of charity reps and a few BPS people like Chalder. This compromise allowed the basically rehab-only service model to develop and flourish.

Anyway, BPS people like Peter White have been hardline as long as I can remember but have got plenty of “wins”.

 

How will funding of bad BPS research be prevented?

I think we need to assume that BPS people will exploit any loophole they can to get funding, and that they will have connections and friends that will overlook questionable behavior. Therefore tight rules to limit research efforts to biomedical aspects would be desirable.

I would not be surprised if CBT/GET people begin claiming that GET studies are biomedical research intended to advance knowledge of PEM. Or that the FND paradigm is about predictions by the brain, relevant to ME/CFS, and biomedical research.

One way to prevent funding of bad studies might be the Norwegian model where patients can veto research they don't like. The professionals already have systems in place to reject bad projects.

 

But maybe things have changed now that we live in the Twitter age, or maybe just the meme age. There is an official meme now out there that it is ME/CFS and not BPS. However much the BPS people want to manoeuvre, they are not the official meme any more. As to when that happened I am not sure. Maybe one day we will look back and see more clearly.

As much as anything I think that when two people like Peter Barry and Ilora Finlay with absolutely no axes to grind and a reputation for being honest straightforward individuals are put in a position of authority and say, "yes the patients are right, this was crap" something happens.