ME/CFS services in the United Kingdom

A standard pro-forma for patients to send, and FOI requests might be the way forward. Doctors 4 ME or Physios for ME may be able to help with this.

I am hoping that a care plan template will be designed by Doctors 4 ME so that it keeps things compliant with guidelines without showing them to veer into renamed GET or CBT on illness beliefs. Although since CBT is based on beliefs I don't see how it can reduce ME Symptoms.

 

Perhaps worth tweeting " qualification" of lead in your area for what is a serious multifaceted illness ( making the point that no " medical" input) or perhaps contrasting the " team" for ME with the "team" for MS/MND/pick your illness ( we don't have any clicnics here to make this point but we can point out the lack of specialists - we don't even have POTS specialists)

 

That's useful to know, a tight window over a "difficult" winter.

As individuals I suppose something we can do is keep eyes out for consultation processes and share them in the advocacy forum space, and support whatever work the charities do. Any other ideas?

The other trend seems to be the move to "self management" and services designed around that, I've yet to read up on what that means in practice.

In a tangent, I wonder how the localisation of service design and delivery affects the power of patient groups (such as, but not only charities) to influence service design.

 

Yes it means that things are heavily weighted towards continuing with the status quo, so keeping nothing where there is currently no service, and merely making paper alterations that require no significant re-negotiation of contracts where there is a current service. It needs external influence to change the inertia.

 

Presumably we need a good sales pitch for commissioning agents.

Though I was much less immersed in the ME world, it seemed to me that the move to establish the existing specialist services related to the belief, helped by the 2007 guidelines and the PACE study, that you just had to provide discrete time limited GET/CBT packages and that was ME/CFS solved.

However now, the argument for management and long term support will be a harder sell, especially as we lack easy to understand (simplistic) outcome studies. Though obviously Covid as well as the new guidelines creates a window of opportunity if we are able to put together the right sales pitch.

I wonder if our key selling points for a new approach are

• Responding to the whole condition not just fatigue, eg orthostatic intolerance, food intolerances, etc
• Maximise current functioning, whilst minimising further deterioration/impairment/disability
• Improved quality of life for patients
• Informing other services so they can more effectively met the needs of ME/CFS, particularly re severe ME
• Encourage patients currently excluded or self excluded from health care to return to the fold.

I suspect this could be best compiled at a national level, even if the pushing needs to be local.

 

Yes, it needs to have a common presentation that is adaptable (within strict limits) to the local commissioning area but the commissioners also need to have some expression of local patient demand rather a National statement, to respond to. They all, in one context or another, have a legal duty to provide services that meet patient's needs, the one thing we can do is remind them of this.

 

I think there may be reluctance to do this. The legal and financial and administrative issues present a lot of potential problems. Even just offering a 'how to' guide could land an organisation with liability if something were to go wrong where a group was set up following the advice.

There have been various changes over the years that have made the issues of local groups of larger organisation problematic - the Charity Commission required that all monies held by groups existing under an organisations umbrella be accounted for as part of the larger organisations accounts - this proved a nightmare as different groups laid claim to different monies and the MEA along with many other organsations across Charity sector closed down their groups, or withdrew their connection. There are also a whole raft of liability problems related to safety, including issues around abuse etc. The MEA has a disclaimer on its local support group page: https://meassociation.org.uk/information-and-support-line/localsupportgroups/

For the immediate challenge I would suggest that individuals writing letters is probably the best way forward - the ME organisations have a 8 -10,000 membership and although not evenly spread geographically, that membership ought to provide a good number of letter writers.

As to longer term setting up groups to feed in to/oversee services - I wonder whether co-operation with the Patients Association might be a way forward. I don't know how they work but they seem to have the relevant expertise https://www.patients-association.org.uk/Pages/Category/work-with-us

 

Absolutely agree about templates.

Doing things informally is difficult for a legally constituted body - every time you encourage someone to do something you have to consider what the ramifications are - a risk assessment ! This may seem mad but if you don't do that then insurance may be void etc. Of course a risk assessment of a letter writing campaign is not going to halt the process, but where you encourage people to meet others, share personal information etc then things get problematic.

 

All that has been happening makes me think that VES suggestion of a more centralised comms team (eg #MEComms) is more needed than ever.
If the different charities/support groups comms people could only communicate with each other on a more consistent basis and give the ME community as a whole one contact point (be it to report articles, misinformation, bad services or whatever) it would be far more efficient and effective.

 

MEA email Newsletter includes the following:

 

With the vague thought that it might be useful to have a breakdown of UK services I started going through the MEA specialist list - I soon found that a whole load of the links are out of date, so sending patients the MEA page is doubly deficient. Not to mention the MEA rider 'at your own risk' with the support groups. Worth a letter to the CCG Chair ?