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

[Jonathan Edwards]

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

So the MEA PROMS project was a complete waste of time?

 

[Jonathan Edwards]

Who does them? GPs? Practioners in the clinics?

Multidisciplinary teams do them so that it is always someone else's job.

 

[Trish]

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?

Discussion on these threads might help:
We had a long discussion of care plans that led up to this.
Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template

My understanding is that a care and support plan is written by a clinician during a consultation and focuses on what support they need from clinicians and carers. Practical stuff, like home visits, carers do help with personal care, OT assessment for home adaptations and aids, specialist support such as dietician or counsellor, and particular things the carers need to be aware of like sensory problems.

What ME/CFS clinics seem to be providing, if anything, is the pwME filling in reams of questionnaires about symptoms and hour by hour activity plans and other stuff no clinician would waste their time reading.

So the MEA PROMS project was a complete waste of time?

Worse than that, a major step backwards, from what we've seen so far.

 

[Sasha]

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.

Would there be any value in doing a survey of clinics to find out what they're doing? With a view to publishing it?

 

[Nightsong]

Back in 2019 ME Action ran a survey of patients' experiences of the NHS CFS clinics. A repeat of this survey would, I think, be a very worthwhile project; it may show if anything substantial has changed as a result of the NICE guideline.

BACME also ran a survey of their members in 2021 that has some interesting data.

 

[MrMagoo]

So the MEA PROMS project was a complete waste of time?

I don’t see how the PROMS project has any crossover with ensuring the NICE guidelines are implemented, lol

 

[Trish]

I don’t see how the PROMS project has any crossover with ensuring the NICE guidelines are implemented, lol

Sadly the authors of it sold it in their blurb as a key part of producing a toolkit for clinics for implementing NICE. I just hope the MEA have seen sense and called a halt to funding.

 

[Jonathan Edwards]

I don’t see how the PROMS project has any crossover with ensuring the NICE guidelines are implemented, lol

As Trish indicates, I think this is precisely what it was for, with the aim of retaining therapist jobs.

 

[MrMagoo]

As Trish indicates, I think this is precisely what it was for, with the aim of retaining therapist jobs.

Retaining therapist jobs, yes.

 

[Kiristar]

There For ME have launched a campaign called "#FundThePlan" in response to the Ashley Judd Response to the parliamentary questions about (not) funding for the UK MECFS Delivery Plan .

Text from FB Post below

Today we’re launching our #FundThePlan campaign!

With over a month until the delivery plan is finalised, ministers can still reconsider the resources behind it.
We want to show them why it is important to #FundThePlan.

Share a video on social media using our template. For inspiration, see our pinned reel for one we made earlier with help from Nicky Proctor!

We know this won't be feasible for all. Our hope is that those able to can advocate for others. If you’re too ill to make a video, please know there's zero obligation to do so.

If you have a friend or loved one who could help, our reel also shares a vid @karenlhargrave made for her husband James.

We'd also love to see your creative ways to get involved if making a video of yourself isn't possible - whether that's recording a video without your face in shot or sharing a message in writing.

Don't forget to tag us, use the hashtag and make some noise! #FundThePlan

 

[Trish]

Does anyone know what is going to be in the plan?
I worry that a fund the plan campaign may end up asking for funds for more BACME style clinics.

 

[Sean]

Yes, seems prudent to hold off demanding funding until we see what it will be paying for.

 

[bobbler]

Does anyone know what is going to be in the plan?
I worry that a fund the plan campaign may end up asking for funds for more BACME style clinics.

I was confused too

these are two separate issues

we needing funding so something half sensible is possible

but either way we don’t want more kingdoms being built

BACME or bps is worse than nothing - the misinformation is devastating to the choices people have to make and eg employers being misinformed or using wrong info to pace people up and out the on CBT course doing more instead of giving adjustments someone would need

we can’t have other patients of any kind signing off the wrong staff being in charge snd naive that said staff who if they are going to change would have by now will do after they’ve been handed control over patients

 

[Jonathan Edwards]

I worry that a fund the plan campaign may end up asking for funds for more BACME style clinics.

It will, for sure, whether intended or not.

Thinly thing that the plan could fund specifically is a hospital based physician run outpatient plus domiciliary service. That is not going to be in the plan.

 

[bobbler]

Does anyone know what is going to be in the plan?
I worry that a fund the plan campaign may end up asking for funds for more BACME style clinics.

And what is it meaning for those like James who are more severe? The misinformation and treatment seems to be getting worse for this group and the situation in hospitals even more scary due to this - BACME who have never really even met me/cfs other than mild hence being able to hold their false beliefs get doesn’t harm (and very strange and terrifying terms like ‘self neglect’ are part of inciting the attitude those more severe are getting very hurt by)

so why do they think this will make things better for that group rather than worse, there needs to be detail in this as if us so vital to get right that we have clinics that are staffed by proper medics who can take responsibility for the most ill snd learning about what helps or doesn’t and I haven’t seen that coming thru?

 

[Cinders66]

Dr Charles Shepherd words on subject

 

[MrMagoo]

I’m horribly cynical, but why would I put my face and name to this campaign when it probably won’t work?

Actually, I don’t want to put my face and name to things, I enjoy being a private citizen. When will this trend of showing “the reality of the illness” pass?

 

[Nightsong]

I obviously haven't seen the plan, but I'm very sceptical of this. Giving more money to the existing clinics will simply allow them to hire more physios, OTs and CBT therapists, entrenching the psychobehavioural worldview further and making it harder to dislodge; in fact, I would have pitched the Government on saving money by removing the unnecessary & unwanted therapists. Has anyone involved in this process actually lobbied for a fundamentally different service model of supportive care?

Similarly, there are dangers in an open-ended demand to fund research: we all saw what happened in the Netherlands, where a chunk of money was set aside for biomedical research by their Government but the medical establishment ensured that it went to Rosmalen for psychosomatic nonsense.

One of the previous #ThereForME updates included a list of the organisations involved; well, if ABN, BACME, RCP and RCPsych have all signed off on the plan then either it is useless fluff or it contains elements that are not in our interests.

Perhaps the lack of funding is a blessing in disguise.

 

[MrMagoo]

Since the Wust paper, the Decode ME side project with the blood signature, and Decode ME about to conclude, I’d prefer to keep any campaigning powder dry until the medical evidence picture is clearer.

NICE is a dead duck and always will be until we have the medical evidence.

 

[Yann04]

Since the Wust paper, the Decode ME side project with the blood signature, and Decode ME about to conclude, I’d prefer to keep any campaigning powder dry until the medical evidence picture is clearer.

NICE is a dead duck and always will be until we have the medical evidence.

What Wüst paper? Is he attempting to replicate his long COVID findings in ME?