United Kingdom: Social Prescribing - a potential part of ME/CFS services

There is a potentially very serious issue about the likely direction of travel for ME Service - its likely reliance on UK initiative, Social Prescribing. It is a threat to NICE NG206.

I just Googled 'Social Prescribing images' and was really concerned at what I found. It's shocking in relation to ME/CFS services for patient care. It effectively ignores the NICE approach.


Social Prescribing
‘Putting people at the centre of health care’




Home of the Social Prescribing Network


What is social prescribing?
Social prescribing is a means of enabling professionals (often healthcare practitioners) to refer their people to ‘link workers’ or ‘social prescribers’ who are specially trained to support people in identifying and designing their own personalised solutions to help with social, emotional or practical needs to improve their health and wellbeing. This often utilises voluntary, community, faith and social enterprise services such as choirs, gardening clubs, exercises classes, art groups and many more.'



The picture was from one of the King's Fund https://www.kingsfund.org.uk/publications/social-prescribingnominated providers website. I did not draw it! Here: https://collegeofmedicine.org.uk/social-prescribing/

The Academy rep GP did this video on it a while ago. https://www.kingsfund.org.uk/audio-video/helen-stokes-lampard-social-prescribing (Dr Helen Stokes-Lampard, Chair of the Royal College of General Practitioners, discusses how the use of social prescribing supports general practice to deliver high quality, holistic care.

This presentation was recorded at our conference, Social prescribing: from rhetoric to reality, on 18 May 2017.)
She co signed the awful letter effectively rejecting NICE in BMJ as well.

Our Local Clinic Executive have a lead who has already in 2019 suggested our ME Proposed service incorporates this initiative (with MUS, FND and IAPT).....

 

I am conflicted about this. When I first became housebound I took it very hard and felt useless, lonely and despairing. The OT referred me to a local initiative for the disabled where they took me in a taxi to a centre where I did silk painting.

It changed my life. As someone who had never been well enough to have a job I was able to look at my artwork and see that it was as good as anyone else's when I had become certain that I was intrinsically a failure. And I made a friend who became like a sister to me. She had cerebral palsy but was able to drive so could visit me.

When my children were young I could have done with a volunteer who would visit me or even better, I knew of some children who were taken to school by volunteers because their mothers had recognised diseases.

If we can steer it away from exercise programs there may be some benefits for people with ME.

 

I see your concern. That the things those who have ME generally all need is medical checks and functional support - ie the last thing they are is thick and needing the concept of 'pacing' described in detail, they do however often live in a world that actively makes that impossible unless someone is going to help with adjustments, ensuring those around said person behave and don't do things that are detrimental (ie suck up the BPS stuff wholesale and start making them run round - yes many do that) benefits, support, care.

Suggesting this as an 'instead', when it could have 'any of the above' e.g. might only offer painting somewhere isn't making sure that PwME receive ANY of the required aspects of the guidelines, because the place they are dumped can't offer them. Instead offering something that requires exertion to many who don't have that spare as a fundamental symptom of their condition shows utter misunderstanding and disregard. There are no guarantees said people are even going to know a thing about ME to ensure activities are indeed accommodating them.

I hate how so many people get away thanks to bystanders all doing it with saying 'I don't want to know' or 'I already know' and assuming ME is like any other condition where offering a bit of 'nice chat' or 'destress' is a good thing. It would take them a tenth of that time spent harming someone to read the doc they've been asked to and find out about exertion and hypersensitivity. But prefer to hold onto their ignorance - I suspect specifically due to the BPS spreading all their tosh around for so long making it a 'dirty subject'. How is that allowed and not seen as deliberately inducing heavy discrimination in all areas against a group of people?

 

RE Social P above.... see slides recently discovered....... re Long Covid.


https://twitter.com/user/status/1484884717111549953

See new Tweets
Conversation

'Robert Saunders (aka McMullen)
@RobertHMcMullen
I was invited to join this meeting to ask a question about #MECFS and #LongCovid. Because I have severe ME, I asked for a specific time so I could rest beforehand. Very disappointed that I was not invited to speak having made such an effort to attend......'
'Barbieloo@BarbR666

SAGE needs to agenda this. L Covid service provision scrutiny shows has been subsumed within existing ME special secondary clinics overwhelming them & rebounding as Rehabilitation-failing NICE competency & compliance.
Replying to
@BarbR666

@Daltmann10
and 6 others
Expanded clinics have recruited HCPs blissfully unaware & untrained in ME & PEM NICE CG205. It's clinical negligence endorsed & funded under NHS England NHS "Improvment" watch. It has to stop.
Replying to
@BarbR666

@Daltmann10
and 6 others
Gillian Leng needs to speak out & flag this. CG205 was reviewed and published under her NICE watch & tenure.'

 

Not sure if this systematic review wants a new thread?

I've not read up on the details but saw it getting some attention:

https://bmjopen.bmj.com/content/12/10/e062951

Press release:

https://www.eurekalert.org/news-releases/967865

SMC: https://www.sciencemediacentre.org/...comes-in-primary-care-and-community-settings/

 

Just anecdotal - I have a "social prescriber" that my GP sorted out for me.. In theory they were going to help me through the process of dealing with the DWP (applying for PIP & UC LCW), in reality I just got on with doing those things. The social prescriber was calling me every 2-3 weeks to check progress, but as I never had any updates due to DWP being so slow at the moment, they recently said I should email them when I got the decisions to let them know, and if I needed help/support with the applications at that point.
So my general impression so far has been harmless, but not useful, just a big 0 at this point.
If my DWP decisions come back negative, it will be interesting to see what kind of help and/or support the social prescriber can provide.

 

There seems to be an issue here (and I also imagine there are other services where there are similar parallels) in that SOcial Prescribers can only signpost. In an area where e.g. there seem to be lots of services, but actually for e.g. ME all those services don't meet the needs of those with ME

Plus underneath all those apparent services, all but one point back to/only signpost to one service - that has 2/3 volunteers trying to service a county or city - you have this situation where the number of signposters:services is ridiculous. None of the signposters can even report there are actually no services. Even if their research finds this is the case.

Are these signposters being funded instead of services (even if they'd be happy to offer said services)? If so it's just a big old hollow thing with nothing underneath.

EDIT*: I've just realised of course that this is the classic definition/example of the term failure-demand. e.g. where you end up with snowballing emails caused by not having enough resource to do the job so spend more and more time replying to 'where's my x' and complaints (which take time away from doing the job itself).

 

Yes now that you say that the SP has definitely said a few times that their role is "just to signpost"... I didn't really think much about what that meant when they said it.

 

Agree this is a big issue. I'm unaware of how it is 'planning services' rather than just being a signpost to whatever might already be out there. Which leaves huge accessibility gaps, and well as functional needs unmet.

Worse the fact is that it conceals this by its presence so people can't even just say there is nothing, or prove it. I think that those with ME/CFS (and probably a few other similar conditions) need specific services commissioned and designed otherwise there is an equality act issue on some pretty major things.

EDIT*:although if the right people were in place and they were enabled and not ignored they could indeed be collecting this 'user-side information' and be able to flag where certain things are well-resourced vs complete gaps e.g. for those who are home-based or have other difficulties, or certain functional services being over-subscribed etc.

ALso a funding inequality if, and I don't know how it is funded, a yearly budget isn't divided equally because noone is ring-fenced to be accessible or dedicated to certain essential things and all these choirs and gardening groups get funding 'because they are there' and it's just a yearly sum to be spent on whatever comes through.

Questions such as whether money that would otherwise go to services like the CAB is key. But even there the issue seems to be the voluntary nature of those who are 'the product' in current climates.

So there is more and more 'hollowing out' because the one bit that is essential isn't funded whilst all the 'surround and signposting' is.