NHS bosses reject calls for specialist ME care, 2024, The Times (London)

From Sarah Boothby on social media - excerpt .
Full post on inquest thread

Professor Hemsley and his staff have worked very, very hard to prevent further deaths. Based on what they have learnt about ME since the inquest opened (October 2021) they have designed entirely innovative treatment plans, that are as safe as possible, exclusively to prevent malnutrition in very severe ME. These plans have been tested with several other patients at risk of death from malnutrition - throughout the UK - they work and they include IVF at home, in the community.

Hemsley has also tried to have these plans commissioned by NHS UK, so that every hospital would have instant access to them as soon as they are needed. His request has been rejected at every level. He said, ‘I have tried, I went to the very top in asking, and I will not stop trying - as I would try for any patient.'

Without strategic leadership at national level, future deaths can only be prevented if individual patients know they must apply directly to the head of patient safety at the RDUH. The person to contact there today is Donna Seccomb. These plans are not safe without a full risk-benefit analysis for each individual patient and a full assessment of their home circumstances. A high level of nursing skill is required before it is safe to be discharged home. Home is the best place for any person with very severe ME. Most families will want to take on that responsibility. Hemsley and his team have made that a real possibility.
 
Amw66 said:
From Sarah Boothby on social media - excerpt .
Full post on inquest thread

Professor Hemsley and his staff have worked very, very hard to prevent further deaths. Based on what they have learnt about ME since the inquest opened (October 2021) they have designed entirely innovative treatment plans, that are as safe as possible, exclusively to prevent malnutrition in very severe ME. These plans have been tested with several other patients at risk of death from malnutrition - throughout the UK - they work and they include IVF at home, in the community.

Hemsley has also tried to have these plans commissioned by NHS UK, so that every hospital would have instant access to them as soon as they are needed. His request has been rejected at every level. He said, ‘I have tried, I went to the very top in asking, and I will not stop trying - as I would try for any patient.'

Without strategic leadership at national level, future deaths can only be prevented if individual patients know they must apply directly to the head of patient safety at the RDUH. The person to contact there today is Donna Seccomb. These plans are not safe without a full risk-benefit analysis for each individual patient and a full assessment of their home circumstances. A high level of nursing skill is required before it is safe to be discharged home. Home is the best place for any person with very severe ME. Most families will want to take on that responsibility. Hemsley and his team have made that a real possibility.
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Oh no….
 
It is hard to pick up the pieces from all this confusion.

So it seems that what was rejected was specifically a proposal for a feeding support regimen for severe ME/CFS. We need to now what that proposal was. I presume IVF means intravenous fluid, which is probably not of central relevance to continuous nutritional support.

The coroner appears to have been unhelpful in the way the inquest was structured - either that or the rules are absurd. There was no chance of it providing maximum information and rational discussion of the issues involved it seems. It is almost as if there was a deliberate policy from somewhere to keep the lid on everything.

Hemsley's proposal may be useful but we need to know what it is and it needs to be an accepted protocol. I am unclear to what extent it could differ from what is already recommended by NICE in the context of BAPEN guidelines.
 
"Hemsley's proposal may be useful but we need to know what it is and it needs to be an accepted protocol. I am unclear to what extent it could differ from what is already recommended by NICE in the context of BAPEN guidelines."

Perhaps belief?

It would be good to know and get some push from main charities to bottom this out .
 
Amw66 said:
Perhaps belief?
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What are you suggesting a belief in - I am not clear. NICE206 and BAPEN believe in the need to keep people alive too.

Amw66 said:
It would be good to know and get some push from main charities to bottom this out .
Click to expand...

Exactly. I have been meaning to talk to Sonya and maybe I should now. Charles may well already be trying to find out what is behind it and let us know shortly.
 
Jonathan Edwards said:
What are you suggesting a belief in - I am not clear. NICE206 and BAPEN believe in the need to keep people alive too.



Exactly. I have been meaning to talk to Sonya and maybe I should now. Charles may well already be trying to find out what is behind it and let us know shortly.
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Belief in the potential severity of the illness .
It is still a huge problem .
If there is no belief, there is no appropriate action
 
Amw66 said:
Belief in the potential severity of the illness .
It is still a huge problem .
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I agree, but not a problem with NICE and BAPEN guidelines, I think. Following things like MUST assessment lead you to providing whatever support is needed. The severity can be measured in kilogram loss and so on.

It is the British Society for Gastroenterology literature that I see as dangerous.
 
Jonathan Edwards said: ↑
It is almost as if there was a deliberate policy from somewhere to keep the lid on everything.

Sean said:
Those opposed to reform still hold the reins.
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I still have a concern about SW sitting on the Board of NHS England and I am sure it would suit him to keep the lid on everything. Establishing ME as a non physical illness has been a large part of his life's work and that has been destroyed. Add in Insurance Companies and patient vilification and the air is looking very murky.
 
Sparkly Unicorn said:
Thank you, that's really informative.

It sounds like a consultant and nurse based on an outpatient and inpatient services sounds like a sensible first step. Could a pilot scheme be set up somewhere?

My mum has Parkinson's and I marvel at the care she has. It's based on a consultant, nurse set up out of the local small hospital and surgery. It works really well. The nurse provides continued care which is excellent for her mental/physical health and then consultant follow ups. She even gets at home visits even though she has c.98% of her mobility and is still travelling the world. Whereas I can hardly get out of bed and there's nothing.

The specialist centres sounds interesting but yes the risk of it descending into a BPS model looks strong if the Royal Colleges are involved.

I suppose this is where the chicken and egg situation happens as there isn't the research to give treatments. But with the NICE guidelines now present the first hurdle would be for them to stick to those and then at least there's some progress.

Rheumatology sounds sensible, especially to avoid the Neurologist FND hole.

Does anyone know if this is what the EDM, started by Clive Lewis, for a Centre of Excellence at the Quadram Centre is? Or is that more for research and not clinical services?

Just trying to get my head around what the practicalities are. I didn't see much in the #ThereForME policy document that looked at actual pathways to get what they want . Not sure if know that behind the scenes or if it's just not been though through. Hopefully yes if Binita is involved.
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What's EDM?
I live in Norfolk and Waveney.
Quadram is just research.
We have a very crappy community "specialist service" here with 4 group sessions by a occupational therapist and (at least when I went through it 5 years ago) it was BPS disguised as believing patients though tbf GET was already off the agenda..Nonetheless I had a very poor experience with it.

I would still have preferred a consultant rheumatology appointment because as it was there was not even minimal clinical monitoring which could trigger interventions if patients continue to decline as I did. I had nowhere to go back to say to try pots or sleep meds to manage the impact of symptoms on the disease course.

Getting ME a (non BPS) speciality home would be massive and so helpful from a research perspective. I just can't see it happening sadly.
 
@Kiristar EDM = early day motion - an MP put forward a personal parliamentary proposal to set up centres of excellence. I don't disagree with that but the big question is who best to run such centres and where. As you say, Quadram doesn't seem to have much on the clinical ME/CFS care side attached to it.
 
Dear healthcare workers

You ain't the victims here.

Stop your whining, and get on with facing up to and fixing the problem that is entirely of your making.

The sooner you do that, the sooner the pain goes away for you. And for us.

Yours etc
Very long-term patient with completely trashed life courtesy of your grotesque incompetence and cowardice.
 
Kiristar said:
What's EDM?
I live in Norfolk and Waveney.
Quadram is just research.
We have a very crappy community "specialist service" here with 4 group sessions by a occupational therapist and (at least when I went through it 5 years ago) it was BPS disguised as believing patients though tbf GET was already off the agenda..Nonetheless I had a very poor experience with it.

I would still have preferred a consultant rheumatology appointment because as it was there was not even minimal clinical monitoring which could trigger interventions if patients continue to decline as I did. I had nowhere to go back to say to try pots or sleep meds to manage the impact of symptoms on the disease course.

Getting ME a (non BPS) speciality home would be massive and so helpful from a research perspective. I just can't see it happening sadly.
Click to expand...

Eek curse of the acronyms! Apologies it's EDM Early Day Motion. The link is here

https://edm.parliament.uk/early-day-motion/61510/myalgic-encephalomyelitis-research-and-treatment

They are usually done to see what support a project/bill has.

Quadram is interesting, the driving force is Prof Simon Carding. Not sure what motivates him but he seems to havea good understanding of the illness and is trying to drive change. Yes, it does seem to be research and not care based
 
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