Thread by @KarenLHargrave

🧵 The results from the public consultation on the interim delivery plan were released this morning

I need time to properly read and digest - but a quick thread with some of the things that jumped out on first glance 👇

gov.uk/government/con…

First of all, consultation wrapped October 2023. That is a LONG wait but the report is finally out.

Decent responses - over 3k & most from ‘individuals’ (presumably patients/carers). Clear throughout that BPS proponents gave opinion. But hopefully outweighed by patient voice.

Clear disclaimer that this is just a summary of the consultation and not a government position.

Final delivery plan coming March 2025

Some really positive stuff coming out on research. So WELL DONE to everyone who stressed this in responding to the consultation.

Clear recommendation for ring-fenced funding. #ThereForME couldn’t agree more!

Respondents also pushed back against a problem statement around lack of trust in research.

Consultation highlighted how confidence has been eroded by flawed research, with a shoutout here for lack of evidence for efficacy of graded exercise 👌

Some respondents highlighted their worries about moving away from
BPS research (I can imagine losing a historic funding stream would be a worry 😅)

But headline seems clear on the need for biomedical research, bio markers and repurposing meds. Let’s hope @DHSCgovuk agree

@DHSCgovuk The consultation also makes very clear the total failure of the health system to provide care at present.

❌ Not using NICE Guidelines
❌ Private care as the only option
❌ Inaccessible care
❌ Patients dismissed

@DHSCgovuk The original draft of the plan did not capture the level of “stigma, disbelief, neglect and indifference” patients experience.

The vast majority of PwME have had bad experiences. Misuse of labels eg FND.

This what we already know but good to see it clear laid out here.

@DHSCgovuk Also highlights lack of provision for people with severe/v. severe ME. Urgent need for training and home care.

Again, what we all know but good to see it made clear.

Ref to assisted dying worries me (let’s fix care first!) but it must have been raised.

@DHSCgovuk Also clear that experiences have been noted here about inappropriate safeguarding referrals and accusations of fabricated illness when children are involved.

Glad to see this raised and noted in the report.

@DHSCgovuk And finally, an interesting mention here of moving away from the ‘CFS’ label - not surprised this came up in the consultation but again, good to see this made clear!

@DHSCgovuk Will stop here because I have a day job to 😅 But lots more in the consultation report - it’s long and pretty detailed.

I’m glad it’s finally seen the light of day. The main thing now is how this all translates into the final delivery plan. Let’s hope it’s ambitious 🤞