ME/CFS services in the United Kingdom

Suffolkres said:

mild to moderate and rehabilitation......
Only 1 year
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'The contract covers the delivery of specialist

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

assessment, treatment, and rehabilitation services for those with a mild to moderate diagnosis, including:

• Clinical assessment and diagnosis support.

• Symptom management and pacing education.

• Multidisciplinary therapeutic interventions.

• Ongoing patient support and review.

• Collaboration with primary and secondary care partners.

• Data reporting and service evaluation.'





'The ME/CFS service supports people to achieve their management and recovery goals and needs, whilst improving their mental health. The service aims to support and prevent a decline in a person's health condition, delivering structured yet flexible recovery programmes based on each individual's recovery goals.

South Coast Fatigue, the existing provider has been selected due to its specialist expertise, established service model, and proven capability in delivering high‑quality ME/CFS services across NHS Hampshire, Southampton and Isle of Wight.

The ICB intends to award a contract following direct award process C, the approximate lifetime value of the contract is £1,475,100

The service will commence on the 1st of April 2026 until the 31st of March 2028 with a 1 year (12 month) extension option.'





Proven how?

'proven capability in delivering high‑quality ME/CFS services'

.
 
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Suffolkres said:
Maintaining their status quo!?
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Interesting that they’ve put the amount the contract is worth in.

How much is it to deliver ongoing (given if a patient is sorted with letters for equipment/adjustments etc this could be every few years after those first more intense appointments then option of appointment if someone gets worse) medical care versions per year ie could something more sensible be done for the same amount ?
 
Sean said:
recovery programmes based on each individual's recovery goals.
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Amw66 said:
And where is the support when goals are not met ?
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Exactly, but people have been discharged by then so they don't see the damage and harm done - also because there's no long term follow up.

I was asked to set a goal at the clinic (I wanted to be able to go to the supermarket and do my own grocery shopping) and I had no idea how they expected me to get there from what they were saying to me, no matter how kind the person I saw was.

I had been able to do it but my health was deteriorating, which was why I needed the referral. I had been pushed back into work and was already having to walk there and back several times a week, which was a very short distance but still more than I could manage. But "adding in a short walk every day" was one of the key tools they were using at the time, so this wasn't appropriate.

There was nothing offered to stop the free fall and I crashed out of work and went from mild/moderate to moderate/severe.
 
JellyBabyKid said:
Exactly, but people have been discharged by then so they don't see the damage and harm done - also because there's no long term follow up.

I was asked to set a goal at the clinic (I wanted to be able to go to the supermarket and do my own grocery shopping) and I had no idea how they expected me to get there from what they were saying to me, no matter how kind the person I saw was.

I had been able to do it but my health was deteriorating, which was why I needed the referral. I had been pushed back into work and was already having to walk there and back several times a week, which was a very short distance but still more than I could manage. But "adding in a short walk every day" was one of the key tools they were using at the time, so this wasn't appropriate.

There was nothing offered to stop the free fall and I crashed out of work and went from mild/moderate to moderate/severe.
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Setting goals also implies that recovery is possible, and if you don't recover then it's your moral failing for not putting in enough effort, or as they like to say, doing it wrong.
 
JellyBabyKid said:
Setting goals also implies that recovery is possible, and if you don't recover then it's your moral failing for not putting in enough effort, or as they like to say, doing it wrong.
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Another great point and one of the problems with the reality of ‘some people recover’ being tied to a fallacy of effectiveness of an intervention. Rather than accepting we know as little about why some people recover as we do for why some people stay sick. Getting to the explanation there would be useful.

It’s the survival bias we see in so many fields from wellness through to millionaires, “if you too did what I did you could have all this”. Fine for those who end up on top but cruel for everyone else.
 
JellyBabyKid said:
I was asked to set a goal at the clinic
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I've been receiving care for another condition since 2012. The consultant has never once asked me to set a goal.

There are treatment goals, but they're the clinic's. Damping down the disease with as few risks and side effects as possible, and offering me what support they can (self-referral, access to the flare clinic, etc).

They've never tried to hand the responsibility for treating the disease to me.
 
Yes well put @Kitty
They also often try to frame it as e powering patients. But it is a confusion of responsibility and accountability. A problem I’ve seen occurs in different organisations which fail and it’s incredibly frustrating for all involved.

As a bit of an aside there’s an interesting book called The Unaccountability Machine which talks about “accountability sinks” where in big complex organisations nobody has responsibility for decisions making it difficult to fix things. I think it’s a problem we see in various bits of the NHS but has particular relevance to how people with ME/CFS are handled. Nobody is responsible for us, everyone gets to say it’s somebody else’s fault when things go wrong, so nothing improves.
 
JellyBabyKid said:
Exactly, but people have been discharged by then so they don't see the damage and harm done - also because there's no long term follow up.

I was asked to set a goal at the clinic (I wanted to be able to go to the supermarket and do my own grocery shopping) and I had no idea how they expected me to get there from what they were saying to me, no matter how kind the person I saw was.

I had been able to do it but my health was deteriorating, which was why I needed the referral. I had been pushed back into work and was already having to walk there and back several times a week, which was a very short distance but still more than I could manage. But "adding in a short walk every day" was one of the key tools they were using at the time, so this wasn't appropriate.

There was nothing offered to stop the free fall and I crashed out of work and went from mild/moderate to moderate/severe.
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I can’t think of a more failed treatment ethos and specialism. This is basically the blueprint of exactly what happens to everyone they do it to who has the illness they are funded to ‘treat’.

So unless the goal deliberately is to take people struggling and make them bedbound forevermore (which has to be considered as a possibility when something becomes so obvious from doing it and achieving that outcome so many thousands of times and declaring oneself a success and getting not just funded but a kingdom grown for it) the consequences are horrific.

No wonder they want to write down claiming something else as a goal and keep being on the books to eg 6weeks, use the ‘goal’ as ‘the treatment’ and then never record the consequences/outcome. Which is like a diabetes clinic declaring they have an aim of getting people to eat 6 chocolate cakes in a row . And being quiet about what happened to patients as a consequence. Claiming that was ‘curing diabetes’
 
bobbler said:
unless the goal deliberately is to take people struggling and make them bedbound forevermore (which has to be considered as a possibility when something becomes so obvious from doing it and achieving that outcome so many thousands of times and declaring oneself a success
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It's so obvious when you say it like that. Which raises its own questions.

bobbler said:
like a diabetes clinic declaring they have an aim of getting people to eat 6 chocolate cakes in a row . And being quiet about what happened to patients as a consequence. Claiming that was ‘curing diabetes’
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They can't possibly deny it at this point; it would have to be willful blindness.

But, as has been pointed out is elsewhere, on this thread, or elsewhere on this forum, they think it is those other therapists who are doing it wrong never them, as they "don't do GET" and somehow failing to see that adaptive pacing upwards is the same thing.
 
bobbler said:
So unless the goal deliberately is to take people struggling and make them bedbound forevermore (which has to be considered as a possibility when something becomes so obvious from doing it and achieving that outcome so many thousands of times and declaring oneself a success and getting not just funded but a kingdom grown for it) the consequences are horrific.
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I don't think it is a goal but considering the stats on the amount of people who have ASPD in medicine and psychiatry and the disingenuous arguments the BPS people use e.g. about Maeve Boothby O Neills death, I think its likely that some of these people know they are causing harm to us and do not care. I think perhaps some others realised along the way it doesn't help but are in denial about the extent of the harm caused and desperately protecting their professional legacies.

But there's that line of thought that the function of a system is what it does, not what it claims to do. And from that line of thought, the function of the rehab approach to MECFS is to cripple us.
 
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