ME/CFS services in the United Kingdom

CRG said:
This really is a time for co-ordinated action, at the very least many hundreds of letters need to be written, and ideally those letters need to reflect 'local stakeholding' (yes I know "yuk", but we need think in terms of bureaucratic audience we have to address). Even in NI, Scotland and Wales where commissioning is notionally at least, done at devolved Government level, local providers/potential providers need to be contacted to alert them to local concern/service demand. In England as a you say 'localism' rules with apprx 250 CCGs to be engaged with.

The NHS financial year runs April to March, with service contracts mirroring this. New contracts can be signed at any point but March is a target date for having service alterations in place and for having budget allocations for new contracts agreed ahead of the new Financial Year. The opportunity to get the provisions of the 2021 Guideline reflected in existing contracts really shouldn't be missed - allowing a roll over to future years will see a loss of momentum and further ossification of bad practice.

I'm not sure that any of the ME/CFS patient orgs are nimble enough or if they are, have the resources, to both agree on a strategy between them and to then push that out across four Governmental Administrations and 500 or so local commissioners/providers. It's going to be a major test of what the UK ME/CFS community is capable of.

Edit to add "further"
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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.
 
daftasabrush said:
Looks like there are a considerable number of doctor-less services, some appear to be Dr led but the "Dr" is s psychologist with a PhD - psychiatrists are medical doctors, clinical psychologists are never medically qualified.

Example - Harrogate and Skipton NHS
https://www.hdft.nhs.uk/services/li...tigue-syndrome-me-service/#how-the-team-works

Key staff
Physiotherapists: Steve Bathe and Gill Fearnley

Occupational Therapists: Julie Robinson and Susan Rathmell

Clinical Psychologists: Dr Georgina Caton, Dr Zoe Tillotson and Dr Sharon McKenna

Administrators: Anita Curtis, Krystyna Wappett

The MEA directory of CFS/ME Services is pretty useful in finding many of these.

The more people who can publicly mention this the better, my social media following is virtually nil thanks to severe ME.
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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)
 
CRG said:
This really is a time for co-ordinated action, at the very least many hundreds of letters need to be written, and ideally those letters need to reflect 'local stakeholding' (yes I know "yuk", but we need think in terms of bureaucratic audience we have to address). Even in NI, Scotland and Wales where commissioning is notionally at least, done at devolved Government level, local providers/potential providers need to be contacted to alert them to local concern/service demand. In England as a you say 'localism' rules with apprx 250 CCGs to be engaged with.

The NHS financial year runs April to March, with service contracts mirroring this. New contracts can be signed at any point but March is a target date for having service alterations in place and for having budget allocations for new contracts agreed ahead of the new Financial Year. The opportunity to get the provisions of the 2021 Guideline reflected in existing contracts really shouldn't be missed - allowing a roll over to future years will see a loss of momentum and further ossification of bad practice.

I'm not sure that any of the ME/CFS patient orgs are nimble enough or if they are, have the resources, to both agree on a strategy between them and to then push that out across four Governmental Administrations and 500 or so local commissioners/providers. It's going to be a major test of what the UK ME/CFS community is capable of.

Edit to add "further"
Click to expand...

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.
 
Haveyoutriedyoga said:
That's useful to know, a tight window over a "difficult" winter.
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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.
 
Peter Trewhitt said:
I suspect this could be best compiled at a national level, even if the pushing needs to be local.
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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.
 
Yes the ME organisations need to take a lead, in some places there are effective local charities/groups, eg Sheffield that are probably going to do a good job but they are relatively few and far between. Many locations have maybe a Facebook group, others like where I am no local support group at all. ME Organisations nationally need to develop some kind of advocacy capacity to support reinvigorating or starting up local groups. Clearly the central effort on advocacy to national organisations has correctly been a priority until now but implementation needs local advocacy capacity to be effective
 
This prompted me into a bit of action. I checked the MEA list and as I thought there is nothing on it with a link to a service where i live. I have written to the CCGs patient service email address asking what service do they provide…… nothing i suspect, it will be under MUS as Chew Graham is in this region.
 
NelliePledge said:
ME Organisations nationally need to develop some kind of advocacy capacity to support reinvigorating or starting up local groups.
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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
 
No I’m not suggesting branches of the National organisations. You don’t need to have a formal organisation structure to do advocacy activity. We did MillionsMissing 2019 based on a Facebook group Mentoring people on how to tap in to resources locally surely wouldn’t create any liability.

the problem with letter writing is that people tend to want to throw in the kitchen sink rather than focus on key demands, again the approach of templates would be most effective
 
NelliePledge said:
No I’m not suggesting branches of the National organisations. You don’t need to have a formal organisation structure to do advocacy activity. We did MillionsMissing 2019 based on a Facebook group Mentoring people on how to tap in to resources locally surely wouldn’t create any liability.

the problem with letter writing is that people tend to want to throw in the kitchen sink rather than focus on key demands, again the approach of templates would be most effective
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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.
 
Here’s a leaflet from the community based pain etc service in Nottinghamshire which covers ME/CFS as well.

I can’t copy from the pdf but there’s a reference there to providing individualised service so seems like despite also listing GET in what they provide i think they are likely to be using the we already work along the lines of the new guidelines

https://picsnhs.org.uk/wp-content/uploads/2019/09/PICS-Community-CFS-ME-leaflet.pdf
 
NelliePledge said:
This prompted me into a bit of action. I checked the MEA list and as I thought there is nothing on it with a link to a service where i live. I have written to the CCGs patient service email address asking what service do they provide…… nothing i suspect, it will be under MUS as Chew Graham is in this region.
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Heard back from them today, apparently a response to an email is please phone us. Replied saying I prefer to communicate by email will see what happens
 
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.
 
NelliePledge said:
This prompted me into a bit of action. I checked the MEA list and as I thought there is nothing on it with a link to a service where i live. I have written to the CCGs patient service email address asking what service do they provide…… nothing i suspect, it will be under MUS as Chew Graham is in this region.
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Heard back from patient services at the CCG apparently sending a link to the ME Association website pointing out there’s a list of services and support groups is a suitable response to a request for what services are available to people with ME/CFS in my city. Which is interesting as there is no listing for this area on either list. Which I have of course pointed out in my response and asked the CCG to provide the information. :banghead:
 
NelliePledge said:
Heard back from patient services at the CCG apparently sending a link to the ME Association website pointing out there’s a list of services and support groups is a suitable response to a request for what services are available to people with ME/CFS in my city. Which is interesting as there is no listing for this area on either list. Which I have of course pointed out in my response and asked the CCG to provide the information. :banghead:
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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 ?
 
CRG said:
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 ?
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Oh not yet I haven’t finished with patient services yet. I want them to do the work asking the questions within the organisation then when they have provided a written reply that there’s nothing available i will have something more substantial to escalate.

Eta the MEA list of services is out of date because the hospital based clinic is a model that has gone out of favour as the NHS subsumed CFS into more general MUS services. And obviously the MEA can only know contacts have changed if they are notified. The community based pain service approach is taking over. Now being community based isn’t necessarily a bad thing as the hospital based services meant people had to travel quite far to get to CFS clinic which made it even more limited towards people with milder level of ME. And then there are areas that haven commissioned any service for MECFS. In a way they are right because it is hard if not impossible to justify cost benefits of pace-light. But I suspect they are doing it more from the ethos of ignoring ‘CFS’ so not giving that diagnosis and just treating symptoms with tricyclics etc and generic CBT.
 
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