#ThereForME campaign / Building an NHS that’s there for Long Covid and ME

I've been looking at the DHSC "Task and Finish" list of involved organisations posted by #ThereForME. Strangely, BACME appears to be listed twice. There is also no indication of which departments or clinicians are actually involved; just a list of universities, organisations & state bodies, which makes it impossible to determine how weighted the group is towards psychobehaviouralism (University of Edinburgh, for instance, could be someone sensible from the genetics group, or it could be one of the FND-specialising neurologists). The involvement of a "national champion for social prescribing" doesn't seem like a positive sign: there's no evidence for "social prescribing" in ME/CFS and we're trying to move towards a position of avoiding NHS-prescribed exertion of various forms.

Why are the established charities completely silent about all of this? If it weren't for the tiny #ThereForME posting this list we wouldn't have any idea whatsoever of what or who was involved. NICE was a fairly closed process but at least there was a public comment period, with open, published responses to organisations' comments on the draft, and the names of committee members were made public. With the DHSC process the usual secrecy & opacity seems to have returned - rarely a good thing for pwME.

 

You're right. It's just appalling.

 

I think it may be that the charities think that if they jolly this Plan along they are more likely to be heard when it comes to real wheeling and dealing behind the scenes. They may be right about that and the outcome may be useful but price paid may be continued waste of vast amounts of money on useless rehab services.

Years back we had a conversation about what would happen if GET and CBT were ditched - would that mean scrapping all ME/CFS services and a worse situation than before. We concluded that nothing could be worse than rehab style treatment, so no service would be better. I don't think the charities have been prepared to think that unthinkable.

 

They’re only guidelines where the illness is of unknown eitology and there’s no diagnostic test or treatment, that’s for sure. Probably a bit different for your Cancer etc.

 

Social prescribing is another myth - housebound people cant really join arts club, physical exercise or whatever. Connecting you to community groups - Ive only ever had negative experiences of self-organised patient type initiatives, I’m afraid. MLM, black market drugs, illegal drugs, stalkerish behaviour….not on my social media thanks. That’s apart from them trying to “get you out” and having you walking, going to chair yoga etc.

In fact I’d really like someone to challenge the Social Prescibing champion on how pwME are catered for and how they’re protected from harms.

 

Yeah, I've come across some good schemes, but they work because they're set up for the right groups. Most people with ME/CFS just aren't. Our local support group has cafe meet-ups that people value, but inevitably it's the less severely affected folk who attend.

I've taken a couple of local women round wildlife sites to show them that there is wheelchair access at a lot of places, and even if you find paths that are iffy after heavy rain, you can just turn round and look for another one. That was about building confidence in using powered mobility, though, not ME/CFS specifically.

 

Hospital units mostly have regular audit meetings where adherence to guidelines is checked systematically. The problem here is that this is now run by GPs. They can tick the box for sending for 'activity management by a multidisciplinary team. But community services probably have virtually no auditing. Other tha of course the sort of thing Sarah Tyson has been providing input to, which is guaranteed to tick all the boxes I guess.

The underlying problem is that the NICE guideline actually recommends multidisciplinary care. And activity management and care plans and all that. If I had been on the committee I don't think I would have let that through without a fight but others perhaps thought it was a fair compromise.

 

Exactly, it’s dependent on what’s available in any local area which a local charity or group has set up. The chances are that a social prescription for a pwME is a lot of talking to and reading through offers we can’t access - various local community gardening, crochet and crafts and chair yoga at 9am on the other side of town in a draughty church hall. Thanks, I feel really isolated now.

So I’d really like the social prescribing champion to explain how this helps people who are housebound, without wasting their energy being told about activities that exclude them? Also, if they reply “you should set one up yourself” I shall implode.

 

It’s ok, nobody is doing care plans or following the guidelines.

 

That’s not a good sign if there is a chance that could have been considered the wrong way when choosing who is on this ‘final’ part

 

Agreed 100%

 

They don’t seem to get that’s a never never con

and that whatever they say and how they say it people like BACME would tactfully act offended as if they weee the victim rather than needing to apologise for past actions etc because that’s their M.O - it will never go away just because‘you pleased them’ and there is no quid pro who or compromise with this type in denial

there is no way forward that doesn’t involve conflict - even if we did what they wanted our bodies would break and we’d be in the wrong for that in te mind of that type (external blamers) as we found out.

in fact the only way to reduce or manage such conflict involves standing up to them, just like going into a rough situation looking like a victim and being apologetic makes a fight more likely to happen than if you walk in looking not to be messed with

they don’t seem to understand they are being conned into a fib that not doing their job and sticking to the truth must be done ‘otherwise it’s out of order to BACME’ - it’s not personal for a patient to tell of the outcome of what something did to them and how dare they still think those harmed should still be silenced ‘lest they have an uncomfortable few minutes’ . But the person there face to face being up in her face with threats always ends up getting their way with most people over the ones disabled by then so much they aren’t even on the phone/online. Even if that’s who your ‘customer’ is. Perspective isn’t held by BACME and they are pretty good from what I’ve seen at making people be under the impression‘don’t dare upset us because we are going to go away and you’ll be stuck with us’ whether that is true or not, ironically to silence people who might suggest they need to change significantly or be shipped out

which is that sane coercion habit they used (I think such habit its inadvertent to them and they don’t realise it’s manipulative because it’s the normal etc) on patients through those years of clinics

I despair frankly that we aren’t freed from this issue during seriously important discussions and we’ve got such lobbying of actual patient groups happening from just one arm - it feels inappropriate

 

What actually is a care plan? Should we all have one? No one has ever mentioned one to me. Who does them? GPs? Practioners in the clinics?

Would we want one if there is no care?

 

It’s the usual issue of a position created as an excuse that it ‘Will cover these most serious things’ but then the reality not at all checking supply is led by urgency/seriousness or even ‘need’ and what helps.

So funding needed for eg hospital patients to be advocated for or the most severe to be helped to access basic support services being set up ends up with a box tick of referral to something that finds a dead end to signpost to, but has ticked the box of ‘having tried’ because they are not required to report that there are 25choirs but nothing for what is ‘seriously needed’

no one is being required to do a thing when they see and realise ‘oh fir me/cfs, we don’t cover that’ other than to have triaged someone with ME into that anyone so they end up cup de sac out but at least ‘off the plate’ of eg the GP ‘because they are now under social prescriber’

I think chucking us under people who can offer nothing, even if they wanted to go above and beyond other than remove us from the list of those who could raise the flag or actually do something, but are told only ‘for those deemed worthy’ is how the dirty work is being done.

it’s heartbreaking going through each channel to find ‘oh it’s a come up dry for me again’ and to realise the person who ‘helped you find it’ to also get yo that point isn’t writing back up the chain or even paying testimony to how unusual that is.

the existence of crap clinics is used to allow GPs to say ‘we don’t offer medical care because usually - fir any other condition- there would be check ups and services and medication suggestions from that specialist , as well as the funding from that clinic covering specialist support services’

and the crap clinic staffs’ view very severe people who they’ve never seen don’t need all this additional stuff - how do they fill in all these forms for example or get a referral if on their own and can’t travel to an appointment or even call to ask for one - influences whether anyone thinks they need to be catered for or ‘doubted’ etc

it seems of recent times too a sense of increasing policy people are being sold the idea even young very severe should be left to die , and it’s not even misinformation but I think conscious choice of ‘because we will not be back productive within a short enough timespan’

I think the old cfs-CBT was about gaslighting is that our big issue was that we wouldn’t accept being treated bigoted ly was what we deserve and to realise it. I actually think this ‘embeddded’ new beliefs is even worse and to a new level - that we must understand’people have decided they don’t want to do things things for you’ and accept that is our fate and it’s correct etc

but it’s happened behind the scenes or in these peoples minds over the last few years alone

and is now getting spread outwards to population just like the old bigotry of the tropey old 2007 flase beliefs stuff took about ten years for the general public to move from thinking it was so preposterous that was what a guideline said ‘we must have misunderstood or be paranoid’ to suddenly overnight so many going straight from that to ‘believing it’. Both of which making us mad, but for opposite reasons.

now we are mad for ever having expected any care even if made so sick we need care that would be life-saving and is generic ie other people in similar situations but with different causes

 

Indeed.
We have nothing here . When my daughter was first diagnosed I could not comprehend that .
Now I consider it a lucky escape .

 

It is also the old “silo” problem. Everyone does their particular part, and if they can’t help they pass you on to some other part. In reality, no part can help you.

 

As far as I can tell, this has been haphazard tracking--individuals finding out what their local NHS trusts are doing and passing on the info, and the ME Association sending letters to individual trusts requesting changes, sometimes to some effect and other times I gather not. I certainly don't think NHS is tracking it.

 

I doubt the NHS spends money tracking whether they meet “guideline” standards. Although they do probably employ as many quality assurance posts as they do doctors, who knows?