United Kingdom: UKCRC (UK Clinical Research Collaboration) Subgroup on ME (part of the UK Government ME/CFS Delivery Plan)

I would welcome a new thread on the ME/CFS Delivery Plan. ( is this a formal allocated name? I don't remember it but that is likely to be my cognitive functioning)

I am quite confused about the various aspects of Sajid Javid's project. This is probably due to being able to spend less time on the forum lately/ crashing because of what I have been doing instead ( some ME related others personal)/things moving quickly once they did start to move.

If anyone with a grasp of it ( hopefully that is you all and that I am an outlier) is able to summarise it in a new thread, I would find it most helpful and be very grateful.

(I don't think I will be back here today. Has taken me ages to write this)
edit: one word amended

 

I will once DHSC have agreed what can be shared,

 

Thank you very much. I'm not clear as to structures, participants etc and will be glad to be brought up to date. Exciting times.

 

I understand that a statement on the process will be agreed by a committee involved in the Delivery plan by the end of next week, outlining the process.

When it comes out depends on when it is then signed off/cleared at the relevant level.

When it does, it would be very useful to have a thread on it.

 

Sorry I’m a bit confused on which is the right thread, but if I understand properly, the DHSC is involved in / setting up various subgroups? I would like to once again bring up a Hospital Passport for ME. The autism hospital passport is one of the few things that usually gets taken seriously or at least semi-seriously when it comes to sensory sensitivities & other needs.

People with ME have lots of needs when accessing hospital (hence why many don’t even go to hospital, even when they need to), not only relating to sensory issues, and this could go a long way to helping if it is endorsed by the DHSC as the autism one is.

I know Dr Nina Muirhead was interested in doing it, had started the project, but then became too busy and stopped doing it. It was passed to me. I think I posted it here on the forum in another thread. I had been surprised at the general lack of interest in such a project until now eg by charities (but I think it might have been due to not having support of anyone in govt until now). Patients and other people can’t really do this project individually either - it’s not something that I could do alone (even if I was well enough to, which I’m not). So now picking it up during these DHSC subgroups seems like a really good idea. I think it’s really important that this project continues.

 

Yes Luna, I will follow this up.

I think that Graham had been working on it as well.

 

@lunarainbows @MEMarge
I think an ME Hospital Passport is a really valuable idea. I am on the severe / v severe boundary and any disruption to my routine dramatically increases my care needs with a huge impact not only on my health but also on those caring for me. The last time I was admitted to hospital I crashed for over a year and never recovered to my previous baseline.

Perhaps a new thread on S4ME (beyond Luna's excellent existing thread in Clinical Care) would be helpful, maybe in Advocacy, or @Trish could advise?

 

Seems there will be. I have accepted the invitation to join (suggested by CS).

 

Yes - great to hear you are participating and thank you for doing that.

 

I've heard back from my MP's assistant re this draft Parliamentary Question*. Can anyone provide me with a link to the current position re Sajid Javid's initiative on ME/CFS - I'd heard there's been an initial meeting (attended by Charles Shepherd?) - so a link to that stuff might help to illustrate the current position.
Thanks in advance.

*
https://www.s4me.info/threads/uk-house-of-lords-house-of-commons-questions.707/page-28#post-423260

 

The three working groups are up and running. I would direct the question to the ME/CFS Delivery Plan Research Working Group, which was initially called the UKCRC Subgroup on ME. I can't provide you with a link to a 'current position' because I'm not sure what exactly you're asking for, and I suspect it wouldn't exist anyway. There has been no public update since the initial research roundtable. I think they're still working on setting up comms.

EDIT: The Health Secretary has of course changed so your question will need editing.

FURTHER EDIT: The research working group is still run under the banner of the UKCRC. Given your question concerns research methedology and trials, I would also direct to someone at the UKCRC (if possible).

 

Thanks

Toying with the idea of copying the draft question to the APPGs (covid & ME/CFS) and the new Minister/Secretary of State for Health & Social Care and (now) UKCRC.

My MP's assistant contacted me yesterday evening, to advise that my draft question was 1st item on the agenda for todays meeting - just been re-contacted to advise me that since Parliaments in recess (summer holidays) they can't ask the question. Adopting the above approach (of circulating the draft question) might be a way of getting it out there - regardless of whether my MP wishes to ask the question!

 

Full content from the file that Adrian posted above for easier reading here.


INFORMATION FOR STAKEHOLDERS

Development of a Delivery Plan on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

17th August 2022


The purpose of this publication is to provide information about work underway to develop a Delivery Plan on ME/CFS.


Introduction

On the 12 May, World ME Day, the former Secretary of State for Health and Social Care (Sajid Javid) announced the Government’s intention to develop a cross-Government Delivery Plan on ME/CFS for England. This intention was published in a Written Ministerial Statement laid in Parliament (https://questions-statements.parliament.uk/written-statements/detail/2022-05-12/hcws23).

Development of the plan will build on the recently published ‘Rethinking ME’ report by the All-Party Parliamentary Group on ME /CFS, (Publications - All-Party Parliamentary Group on ME (appgme.co.uk)), the recently updated guidance from the National Institute for Health and Care Excellence (NICE) (http://www.nice.org.uk/guidance/ng206), and the recently announced top ten (plus) research priorities for ME/CFS (The full report - ME/CFS Priority Setting Partnership (psp-me.co.uk).



Governance structure

A set of working groups has been established to support development of a delivery plan.



APPG : All-Party Parliamentary Group on ME

The purpose of the Working Groups is set out below.

• The Delivery Plan Task & Finish Group oversees and monitors the progress of all the other groups to develop the delivery plan. Its job is to make sure that the groups work effectively together, to avoid duplication or resolve conflicts.

• The All-Party Parliamentary Group on ME consists of MPs and Peers and so is not directly connected into the Delivery Plan governance structure. It is shown with a dotted line on the diagram, to indicate that we will connect with the APPG on ME to keep the group updated and welcome any views or further information from its ongoing work. All-Party Parliamentary Group on ME (appgme.co.uk)

• The DHSC Co-ordinating Group co-ordinates all stages of the delivery plan development.

• The Engagement Advisory Group advises on options for engagement, to ensure that anyone who wants to is able to share their experiences of living with ME/CFS and working in services to support people with ME/CFS, to shape the Delivery Plan.

• The Research Working Group is responsible for looking at all aspects involved with research into ME/CFS, including funding, applications and the challenges and problems that exist for research into ME/CFS. They will also propose actions to address these and find ways forward for research in future.

• The Attitudes and Education Working Group is responsible for looking at the current problems and developing specific solutions to address the challenges surrounding attitudes towards ME/CFS, including by those involved in the care of people with ME/CFS and the education of healthcare professionals about ME/CFS.

• The Living with ME/CFS Working Group is responsible for looking at quality of life and the broad range of services including health and social care, education and training and the welfare system. Other aspects being considered include loneliness/social isolation, carers and support for people in/into paid and unpaid work.

Membership of the Groups

Chairs

• There are two co-chairs on each Working Group and the Engagement Advisory Group.

• One co-chair has been invited to represent people with lived experience of ME/CFS. These nominations have been made by Action for ME, as this organisation has previously been involved in recruiting people with lived experience to join national research projects into ME/CFS. All co-chairs invited to represent people with lived experience of ME/CFS have previously been recruited through one of these processes.

• The other co-chair has been invited into the role by the government because of their professional status and relevant expertise.

• The Delivery Plan Task and Finish Group is chaired by a Director from the Department of Health and Social Care.

People with lived experience of ME/CFS

• There are two places for people with lived experience of ME/CFS (which includes carers) on each of the Attitudes and Education and Living with ME/CFS Working Groups and the Engagement Advisory Group.

• These people have been nominated by Action for ME and BACME (British Association of Clinicians in ME) because they have already been through a national recruitment process to represent the ME/CFS community.

• The Patient Advisory Group as a whole group has a place on the Attitudes and Education Working Group and the Research Working Group. Different members rotate into this place depending on availability and capacity whilst another member supports by taking notes.

• There are also places on the Research Working Group for other people with lived experience, including carers.

ME/CFS charities and organisations

• There are three places for people nominated by Forward ME on each of the Attitudes and Education and Living with ME/CFS Working Groups and the Engagement Advisory Group. Forward ME is the recognised umbrella organisation for many ME/CFS charities and organisations.

Additional members

• Other members of the Attitudes and Education and Living with ME/CFS Working Groups have been invited to join for different reasons. Some have specialist expertise because they work in ME/CFS services. Others represent organisations such as professional bodies (e.g. Royal Colleges), the NHS (e.g. NHS England, commissioners of services), or Social Care. Some members are responsible for education and training (e.g. DHSC, General Medical Council, Health Education England). Others work in the relevant Government Departments for wider public services (e.g. Department for Education, Department for Work and Pensions) or Arms-Length Bodies (e.g. the National Institute for Health and Care Excellence).

• Other members of the Research Working Group represent organisations such as funders (e.g., the National Institute for Health and Care Research, Medical Research Council, ME Research UK), researchers and clinicians. Forward ME represents ME/CFS charities and organisations who don’t commission research.

• The members of the Delivery Plan Task & Finish group include all the co-chairs of the working groups, ME/CFS specialists, senior DHSC and cross government departmental officials, representatives from NICE, NHS England and three ME/CFS charity/organisation representatives nominated by Forward ME. The Scottish, Welsh and Northern Ireland Governments are also represented.

• The DHSC Coordinating Group consists of DHSC officials.

• Further detail about Working Group membership will be published once necessary consent for information sharing has been gathered.

Timescales for the work

• The Working Groups have been meeting regularly from June 2022 to discuss current problems, a vision for the future and proposals for action. These will be developed into a draft Delivery Plan.

• We intend to release the draft Delivery Plan later this year to support wider engagement on the plan and proposals for action.

• Everyone will have an opportunity to share their experience and give their views on the draft Delivery Plan at this point.

• All the evidence will be taken into account before the final Delivery Plan is published next year.

 

Thanks @Adrian . Have you got any further persuading them that they need a dedicated website or webpage for comms? I saw on the most recent Forward-ME meeting minutes that FME discussed PAG's 'objection' to ME/CFS Delivery Plan comms going through FME (which I also don't think is a good idea). They need to do this directly.