UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

I'm cognitively not awesome atm, but isn't the letter giving a somewhat different impression of what the project is?

The letter implies it's about a survey about "how the patients are treated" by the clinics in the sense of attitude, type of treatment, good/bad things about the service, like the letter suggests:

But I understood that this project was about using questionnaires for patient assessment, about "clinics assessing symptoms, severity levels and capacity to function physically and cognitively" about applying "a clinical assessment toolkit to monitor people with ME/CFS who use NHS specialist services", and that's where the issues lie, no? That it's not about what is offered at a clinic, but about "monitoring" patient's illness with a wonky questionnaire?

I'm sorry if I'm asking the obvious or something that has already been discussed at length.

 

I think the MEA needs to clarify why they funded this.

It’s becoming less and less like the biomedical research they claim to fund.

 

None of them knows I am afraid.

 

I haven't been able to follow all of this discussion, but it seems to me from the recent comments that there may be another issue arising, so I'll just leave this here.
What is valid consent? | ICO

 

I thought there were no services for severe/very severe in the NHS?
The first question on the PROMS Sarah showed was to categorise the level of severity. Why would you be at a clinic which doesn’t accept you, to answer that question?

 

Good point, but there are no services for most pwME in the NHS.

Once you've been diagnosed and gone through the pacing and management advice, that's it. Many long term patients have either never been referred to an ME clinic, or haven't attended one for years or decades.

There is no monitoring, there are no patient-reported outcomes. Only GPs ever see them, and they haven't time to do this.

 

This is true, but the point being - why are services which won’t accept severe/very severe patients asking a PROMS question about if your illness is severe or very severe?

How will these SVS patients get to the appointment - at a clinic which won’t take them?

 

Internet treatment/re-treatment?

 

but the clinic won’t accept them as a patient

 

I think we need to be a little careful here - I (I've just retired) worked at a very junior level in policy development and well -- I recall a retired colleague describing voluntary organisations (with an inflated sense of importance) as "busybody's" who basically had no more merit than private individuals. So MEA are going to define "clinical practice and service development" - surely that looks a lot like NICE's role?

I agree re PROMs, but I don't think scientists/researchers, or those (Government) bodies which commission research, can be excused - they're supposed to be professionals and their behavior has fallen way below what could reasonably be expected

 

Are there other diseases where NHS clinics deem some of the sufferers too ill to accept as patients? I can't think of any examples at the moment, but maybe there are.

 

Sure, but in the world of proper medicine I get the impression they'd be under the auspices of the same clinic. The mode of delivery might be different, but it's usually managed by the same consultant(s) even if additional specialisms are needed for severely ill patients.

I just worry these services for severely ill people might never materialise, because the clinics aren't envisaged as part of core hospital outpatient services. They might have few or even no doctors, meaning that (as @MrMagoo points out) they won't accept severe patients because they're not qualified to look after them. That would be bad for both patient care and service development, as clinicians who're specialising in ME need to encounter the full spectrum of the illness—not least because some of the mildly affected patients able to drive themselves to appointments and walk to the clinic from the car park might one day find themselves in the severe group.

I'll be delighted if I'm wrong, though, the provision's sorely needed.

 

Exactly

 

I feel like the “and long Covid” part of this whole thing is relevant, too.They’re rapidly being chucked in with us and having some tick-box “82% of patients improved” PROMS outcome, because of course the numbers are a “blend” of physical and emotional improvements
I hope I’ve paraphrased that right, although I am known to misremember

 

Indeed - good spot/point

What’s the cliche about the wheel turning or something? Just history repeating same error