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

Amw66 said:
So what is the process for sign off ?
Is it a case that the tick box has been ticked and there is no further input/ influence offered other than picking up typos?
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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.
 
Keela Too said:
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.
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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?
 
Keela Too said:
I was on one of the working groups for the delivery plan. Most of what I saw near the end of the process was really good. (With the understanding that there are always going to be some things I’d prefer worded another way).

So I wonder if the problem is not the process by which the information was collated, but rather that the patient voice ended up being heard, and that someone somewhere has not appreciated that and put obstacles in the way?
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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!
 
Amw66 said:
So what is the process for sign off ?
Is it a case that the tick box has been ticked and there is no further input/ influence offered other than picking up typos?
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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.'
 
Keela Too said:
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.
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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'
 
Keela Too said:
I was on one of the working groups for the delivery plan. Most of what I saw near the end of the process was really good. (With the understanding that there are always going to be some things I’d prefer worded another way).
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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.
 
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Jonathan Edwards said:
Which I read as the same. Nothing about care that might keep people from starving.
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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.
 
Jonathan Edwards said:
I am intrigued to know what sort of really good things you are referring to, @Keela Too.
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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.
 
Jonathan Edwards said:
Searching the net on RCP and ME/CFS under various words yields nothing since their objection to the 2021 guideline.
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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:
Pandora’s box – ME/CFS guidance

There have been a few comments on social media and in emails to me following the decision by NICE not to release the latest iteration of their guidance on ME/CFS. It may help to outline our (and my) position on these guidelines.

Firstly, the guidelines have been produced by the National Guideline Centre (NGC) that we host. That we have reservations about a guideline produced by the centre should not be surprising. We would hope both the RCP and the centre can remain independent of each other and it would be improper to have undue influence over any NGC committee.

The ME/CFS guidance has been long in gestation and a previous version was felt to be unacceptable by patient groups. The latest iteration was produced by a committee which included extensive patient representation. This is a good thing and any issues we have with the guideline must not focus on this.

The main bone of contention is around the roles of cognitive behavioural therapy and ‘graded exercise therapy’ or GET. Trials in this topic have been problematic to put it mildly with results as contested as these guidelines. Our response to previous drafts of the guidance has relied on the input of experts in the field and my views have been shaped by them, as they are on many topics on which I have limited experience (although I do have patients with ME/CFS in my clinic as well as personal experience through friends). I found a very recent meta-analysis on the safety of GET interesting. Like all treatments, ensuring it is properly prescribed and supervised seems critical.

We made substantial comments on the proposed guidance through our experts and our main worry is that the latest version that we have seen has not taken into account any of these comments. We have been criticised by some as lobbying hard to prevent the guidance coming out. This has not been the case but we do feel our comments are important.

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.
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Keela Too said:
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.
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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.....
 
Nightsong said:
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:
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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
 
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Keela Too said:
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.
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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.
 
Nightsong said:
While searching I also came across a old but detailed comment by Andrew Goddard in an RCP President's Bulletin
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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 'proning' technique when people found the arterial blood oxygen jumped up. That is called objective evidence, not clinical experience.
 
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