UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

Sadly I am not entirely sure, though others maybe more on the ball than me.

While there was good communication during the time I was involved (I was a substitute into the process part way through), the lines of communication seemed to evaporate once our part was completed.

 

So if real knowledge manages to sneak in through them accidentally letting a qualified patient into the process who is heard then it is quietly getting removed at a later stage?

 

Yes!
Wendy was really helpful and understanding .....
But ultimately, has no capacity to effect change and force NHS England's hand.
Only a Government minister/ Parliament can do that I believe .....constitutionally and governance wise.
DoH lost it's control in 2012.......

I still hate the Miro boards though!

 

It's not on NHS E list! 12 years on.....


'The NHS Commissioning Board was established on October 1, 2012, as an independent body with executive powers and responsibilities. It was later renamed NHS England. The Health and Social Care Act 2012 delegated resource allocation and oversight to NHS England.'

 

Wiki
'George Stoye, senior research economist of the IFS, and said the annual increases since 2009-10 were "the lowest rate of increase over any similar period since the mid-1950s, since when the long-run annual growth rate has been 4.1%".[57]

This has led to cuts to some services, despite the overall increase in funding.[58] In 2017, funding increased by 1.3% while demand rose by 5%.[59] Ted Baker, Chief Inspector of Hospitals has said that the NHS is still running the model it had in the 1960s and 1970s and has not modernised due to lack of investment.[60'

 

I am intrigued to know what sort of really good things you are referring to, @Keela Too. Just curious. I was on the Research group and my impression at the end was that we had got pretty much nowhere. It may be that things are happening out of view but the Interim Report 'My Full Reality' seems to suggest just straightening the napkins on the dinner table.

For Living with ME it says:

'In response, there are broader actions proposed to improve awareness and understanding of the services that are available to people who need additional support, including carers. Other actions cover the improvement of this support, such as the Law Commission reviewing existing social care legislation relating to disabled children, and further discussions with stakeholders about health services and adaptations to support better access.'

Which I read as the same. Nothing about care that might keep people from starving.

The Education bit seems to focus on the e-learning module, which seems to be the solution to everything, not just GP education but medical schools. Yet it seems to have been written by someone who has no real understanding of the problem.

So I am wondering what good stuff may have got buried?

 

I note that the Education section mentions the Royal College of Physicians keeping up to speed on ME/CFS but I don't think the RCP people involved in training even bother with it or accept that it exists. It would be interesting to know who is supposed to be in charge of the topic.

Searching the net on RCP and ME/CFS under various words yields nothing since their objection to the 2021 guideline.

 

So window dressing .

 

Or any social care for those who can eat, but need support with other aspects of their lives to stay as well as they can.

There's been a growing trend of significant numbers of people having legal entitlement to services which are either already overwhelmed or effectively don't exist at all.

The Law Commission can review legislation all it likes, but it won't make provision appear until central government finds a way to give local authorities more money. It also needs to begin moving social carers towards equivalence with healthcare assistants and nurses—accredited training, pay structures, secure contracts, career advancement, pension provision.

 

I’m not good at keeping track of exact words, or records of ins & outs. However, I felt the patient position was being heard and generally being well supported. Sorry for being vague. It all seems quite a while ago now, and I’m not keen to say more. The point I wanted to make was that there was some good stuff happening.

 

Yes, pretty much nothing. In the AGM 2024 Annual Report of the Council there is a reference to the NHSE ME/CFS draft report being an item "tabled for information" (p22).

While searching I also came across a old but detailed comment by Andrew Goddard in an RCP President's Bulletin, from the time that the NICE guideline was delayed, which I had not read before and which I can't find a reference to on the forum - there is no public archive; I think they are usually emailed to members and fellows, but it now appears in this historic collection of Goddard's bulletins (pp218-219, entitled "Pandora's Box"). Quoting here for ease of future reference:

 

I must have missed it in Living With......It seemed to be a talking shop with lots of coloured stick it's moved around.
Sorry Miro board.....

 

Good find @Nightsong. I don't remember seeing this.

Two things strand out for me:

1. Here's the Peter White meta analysis he refers to which focuses on harm from treatment. It references ,Cochrane among other things.https://www.sciencedirect.com/science/article/abs/pii/S0022399921001781?via=ihub
2. This comment

"I have been personally criticised by some for commenting as ‘just a gastroenterologist’ and for citing clinical experience as relevant. I would respectfully point out that many ME/CFS patients attend GI clinics and it is important that all physicians understand the condition and what treatments are available.".
​

Wonder what he does when GI symptoms worsen to the point of malnutrition when putting clinical experience before ME/CFS guideline?​

Looks like my carers going to be reading this bullen to me over the next 20 days!

ETA. That article was written on 26 August 2021, 38 days before Maeve Boothby-O'Neill passed away.

Is the use of the Cochrane Review, via PW and the President of the RCP, now directly linked to a death in which a Regulation 28 report preventing future deaths has been issued? @Trish

 

I assume Andrew Goddard prescribes CBT for irritable bowel syndrome. Also clinical experience counts for very little if you only see tiny cohort and you do not follow them long-term.

 

Fair enough. In the Research Working Group there were a lot of helpful sounding noises but nobody could think of any new suggestions much so nothing seemed to come of it. I suspect that in the Living With or maybe Education groups there were actually some good suggestions being made and the same helpful sounding noises but I worry that the outcome will be the same.

 

Intriguing find. The last paragraph is hilarious.

I have been personally criticised by some for commenting as ‘just a gastroenterologist’ and for citing clinical experience as relevant. I would respectfully point out that many ME/CFS patients attend GI clinics and it is important that all physicians understand the condition and what treatments are available. In an area where there is a paucity of high-quality trial data I think clinical and patient experience has relevance. If we had not used clinical experience in the pandemic before trial data was available many more would have died.

I don't think I accused him of being just a gastroenterologist (it's possible) but the second bit was me. So he has never learnt that you cannot say 'I know they work' for your treatments unless you have decent trials. Talk of the blind leading the blind. If we used some common sense rather than clinical experience in the pandemic there would have been no more than a score of UK cases - as New Zealand showed. Ten times as many people died as needed to even after we had started the lockdown process. If this is what clinical experience provides God help us. All I can think that he is talking about is the rapid adoption of the 'pruning' technique when people found the arterial blood oxygen jumped up. That is called objective evidence, not clinical experience.