ME/CFS services in the United Kingdom

The Royal London Hospital for Integrated Medicine - as of 06/11/21

https://www.uclh.nhs.uk/patients-an...mation-pages/chronic-fatigue-syndrome-service

 

Maybe you should specifically ask what services the CCG commissions (rather than 'provides')? Everything has got so woolly with the use of council funded 'community services' and voluntary organisations now providing so much of the community support available for chronic health conditions, rather than the NHS.

 

A co produced MC and CFS service model; ( hopefully NG206 compliant)

I have extracted any identifying info, but have attached a proposal from October 2019 for a co produced ME and CFS service model;

• delivered as a 9 page power point;

• a then statement of intent from Commissioning at a Community Engagement Partnership meeting in public, of a co produced MC and CFS service model which took into account NICE CG53 and it's inherent flaws.

• The timetable was suspended due to Covid.

It is being revisited ahead of Winter Plans and Governing Body Foreword Plans plus October 2021 reissue of NICE Guidelines NG206.

Be interested for any comments, suggestions and feedback please.

 

Rebranding!

 

https://www.cpft.nhs.uk/service-det...omyelitis-me-chronic-fatigue-syndrome-cfs-70/
How our service can help you
Although the National Institute for Health and Care Excellence (NICE) 2007 guidelines for the management of ME/CFS are under review, there is evidence that activity management, relaxation, improving sleep and diet, exercise/physical activity, managing stress, unhelpful thinking patterns and setbacks can support improvement.
Useful documents

Patients

CPFT COVID-19 Patient Education Pack.pdf [pdf] 986KB
CPFT Information Regarding the MECFS Programme.pdf [pdf] 454KB
CPFT Patient Self Help Booklet.pdf [pdf] 516KB
CPFT Post Viral Fatigue Steps to Recovery Poster.pdf [pdf] 68KB

Covid-19

Practical advice for people during and after having COVID-19
Practical advice for people treated in hospital
Practical advice for people who have recovered at home
Post Viral Fatigue and Post Viral Fatigue Syndrome Following Coronavirus Infection
Post Viral Fatigue A Guide to Management
Covid 19 Vaccine update
Your Covid Recovery

Professionals

CPFT GP Booklet.pdf [pdf] 434KB
CPFT How to refer to CPFT Neighbourhood Team for Patients with Generalised Fatigue.pdf [pdf] 317KB
General Fatigue Management advice.pdf [pdf] 828KB
CPFT Post Viral Fatigue Booklet.pdf [pdf] 421KB
CPFT Post Viral Fatigue Post Viral Fatigue Syndrome and MECFS.pdf [pdf] 273KB
Adult CFS / ME Service

Tel: 0330 7260077
Press 2 for Huntingdon area
Press 3 for East Cambs and Fenland area Press 4 for Peterborough area
Press 5 for Cambridge area

Email: cpm-tr.cfsme@nhs.net

.....................................................................................

Leaflet published: October 2020 Leaflet review date: October 2021

 

https://twitter.com/user/status/1456965310100221955

 

Dated 08/11/2021
Reply to an email addressed to the Health Minister, Welsh Government, asking what action she will take following publication of the new Guideline.

 

Is it just me or does that appear to suggest that they plan on handing/leaving control to the very 'experts' who have been abusing pwME for decades?

i.e. not good, really quite not good.

 

Non committal bureaucrat language, at this stage I'm not sure it means anything other than if there are to be services for ME/CFS then from the funding perspective they're going to be rolled into the unhappily named Adferiad programme - English translation is Recovery, which of course sets up an inappropriate expectation. But I doubt that, as yet there's much substance on the Government side as to what they expect to happen, other than having something they can point to when the citizenry ask what the are doing about Long Covid etc

I think there are some positives in the reply, there is going to be some effort at the Government level to at least understand what the new Guideline means, rather than just leaving it on a digital shelf somewhere. Also they are going to write to the Boards and to GPs, which should add to the weight given by any NICE promotion, and removes any possibilities that the Boards and GPs could plead ignorance that the new Guideline exists.

Unfortunately there's a history of the Welsh Government making decrees which are then lost in translation through the Boards to Primary Care where the promised money never quite matches the promised services.

The sentence: "We need to understand the definition of specialist as NICE determines as there are many dedication(sic) healthcare professionals across Wales who do consider themselves experienced in providing support and treatment for those living with long term conditions such as ME/CFS." is confusing as the 'many professionals' seem to have been notably absent up until now, with just two small services in North Wales and one in Mid Wales and as far I can see there is no other info on specialists for ME/CFS in the other five health boards which cover the vast majority of the Welsh population. Maybe one thing to come out of this will be an uncovering of just where patients are being directed to - if anywhere.

Publishing the 2021 Guideline was only ever going to be a start, I think this reply is mostly just evidence of slowly grinding gears.

 

I haven't looked into this much but there are 'compliance audits' carried out re various changes for health issues. But there doesn't appear to be any central body who controls or implements this and I don't think it's in the CQC (Care quality commission) 's remit.

Does anyone know how this works or who to ask? I would have thought that the charities might have been ahead of the game on this and had a plan for what to do after publication of the guidelines to ensure its implementation.

 

Do you mean this ? https://www.england.nhs.uk/clinaudit/ Sorry I know nothing about it.

 

2010... APPG Services for ME in UK

 

I've had a brief look at it. I think it's the sort of thing that Forward ME could focus on. There could be a precedent here: https://www.hqip.org.uk/a-z-of-nca/#.YYlz6LrLfV8

It could be argued that following a suitable period of time for the new Guideline to bed in, say 6- 9 months and recognising the historic deficiency in care for ME/CFS patients that there should be a nationwide review of what is being provided and where improvements should be made. I think it certainly would need a political push, I guess we'd have to accept a Long Covid linkage for that.

 

Probably prefer not to create records that can be FOI'd.

 

This is essential! If we could just add 200k for a decent PR company to create a solid strategy and plan..
In all seriousness, we absolutely need this, we need support to local groups who can do the local activism, in line with the place based NHS model, we need somebody bringing together what is learned at the local level and using that to help other groups, pushing consistent messaging, providing advocacy toolkits.

Some of this might be happening already, I know I wouldn't release a PR campaign plan to the public if I could help it.

As somebody else has mentioned again, accountability is fuzzy in the new layout, this is where the ME organisations can help - as a patient group we want to know how accountability works now, who it's best to send our questions and comments to, who to complain to, who is making the decisions, where to find out about the opportunities to be a part of genuine patient consultations.


Changes might be made without decent consultations and will probably be made with the long covid service in mind, but it's probably not going to be as "medical" as the long covid offer (I was going to say "because there's less evidence for medical interventions for ME" but if you add it up there's got to be a lot more for ME than long covid given the time frame, surely).

I don't really know what community based means, but there is definitely a move towards including more charities and other community organisations in commissioning (ie for running support groups, which are run by non-clinicians and peers) and a big push towards making GPs better at managing long term conditions. Not sure how that will be done. I think the community based approach involves making 'interventions' more available from GP surgeries where possible so people get faster access to some of the more basic stuff and that in theory reduces the wait for the more "complex" stuff...provided the funding for that doesn't then magically disappear due to 'reduced demand'...

There is also a huge movement towards ***self management***. I'm really keen to know more about what the self management approach will look like in practice. It feels like a buzzword that could justify a wide range of commissioning decisions.

 

SORRY for the multiple, long posts! This one might belong elsewhere.

Just reading up on 'self management', 'coproduction' and service design and found "Shared responsibility for health: the cultural change we need" by the Kings Fund. Lots of context explaining what self management is supposed to be, a mention of service codesign (bold, below) and some links to more practical case studies from within the article

There is good evidence for people taking greater responsibility to manage their own health where they have the capabilities and motivation to do so. ...Putting shared responsibility into practice requires people to be offered support tailored to their needs, preferences...

There are many examples of expert patients who are denied requests for protected tests and treatment despite that the request is often rooted in evidence - often denial is because the test/treatment isn't the most evidence based intervention for a population, but it might well be worth a try and worth the risk for the individual patient when weighed against their individual circumstances. If going all in for 'self-management', we need individualised decisions and better access to resources for those individuals.

They do say that the old model where "professionals control care" needs to become "the patient as a source of control" but I wonder where they feel the line is drawn, and where indeed it ought to be drawn.

They also point out that;

Improving health and wellbeing is far easier for some individuals and communities than others, as demonstrated by work on patient activation (Hibbard and Gilburt 2014).

Indeed. And far easier for those with conditions that have a range of treatment options.

There is evidence that health coaching can support self-management and behaviour change, although evidence of its impact on physical outcomes is mixed.

Physical functioning is particularly valuable to those who don't have enough of it. Like money.

Goal setting has to recognise that for patients with multiple health problems functional status and social participation may matter more than clinical targets.

Yes, important for *clinicians* to recognise this where patients are less interested in their X levels and more interested in whether they have the ability to leave the house. I guess I could say my goals have been ignored and dismissed by GPs who have been far more interested in celebrating my normal test results, or in ordering a test that I personally don't feel is needed, and remaining disinterested in other requests for help that would help me reach my goal to be able to leave the house more.

Much of the knowledge and expertise required to self-manage long-term conditions is not held by professionals, but by people with experience of the condition. Peer-based approaches can be a powerful tool in building people’s capabilities to manage their health.

Yes, and a lot of us are getting on with that (and professionals don't always like to hear it!). But the point to note here is that patients are often the experts and should be listened to.

It does then go on to say that;

People with first-hand experience of a mental or physical health condition can also play a vital role in educating professionals. This requires a shift in the prevailing view of the professional as the expert, to one where both patients and professionals recognise and value the skills and expertise that they each bring.

And says that this is crucial;

Having patient leaders on system redesign boards, running co-production workshops with members of the public or using specific methods such as experience-based co-design.

I think that's where we want to be getting stuck in.

Lastly, here's a quote for the bank;

...the most important cultural change is in the relationship between patients and the health care professionals who care for them. For this to happen, all involved must fundamentally change their behaviours and attitudes by moving to genuine partnerships in which patients and professionals engage with each other as equals.

Will somebody let the RCPSYCH (or other) reps who worked on the NICE guidelines know? You know, the ones who felt the process relied too heavily on patients.

Here's a nice graphic that explains everything..I mean nothing
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