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:
The toolkit project can contribute to that by clarifying patients’ main difficulties and priorities, what they want/need from the service, and what services are (and are not) doing well.
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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.
 
If the "clinical toolkit" was actually just a survey asking users of NHS ME/CFS services if they felt the service was useful, if they felt that they had been treated with respect and asking for ideas for improvements, that would be fine and useful. But, that would not be clinical toolkit. And would not take 90,000 pounds to develop.


Sean said:
The information gained from this project and the toolkit will provide the essential bedrock for any effective change to clinical practice and service development.
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The information gained from the toolkit will primarily be gathered from people attending the clinics. These people will be new to the disease and won't have had time to understand the history of service provision or the requirements of the NICE Guideline. People with severe ME/CFS won't be making it to the clinics.

The project development process does not seem to involve asking people what changes to clinical practice and service development are needed. That did not seem to be part of the scope - and in fact there seems to be a distinct lack of openness to any ideas people have offered.

So, I'm not sure how the information gained from the toolkit and the project are going to provide 'the essential bedrock for any effective change to clinical practice and service development'. The development of a subjective PEM survey that may or may not end up being very flawed, for example, does not seem the most direct way to the information needed to change clinical practice and service development.


Perhaps we ask the MEA for a project update that provides some indication of what the project will now look like, what will be changed in response to the considerable concerns expressed about the project? Tyson's soon-to-be-delivered progress report to the MEA Trustees presumably will address the feedback she has received.
 
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The idea I have gleaned from the initial announcement of this project and the comments Sarah Tyson made on this thread is that the toolkit is supposed to be providing resources to be used in NHS clinics as part of their implementation of the NICE guideline.

It seems to be based on the model of rehabilitation clinics that Sarah Tyson is familiar with for other conditions such as stroke. The model, as far as I can glean from things said and written, is that patients will be subjected to a 'rehabilitation' program run by a multidisciplinary team of therapists, including those already running that model for the old CBT/GET based guideline.

The plan would be for the therapists to get the patients to fill in these new PROMs instead of the old ones at their first visit to a clinic, and after their rehab course they will fill them in again to see how well they have done. The aim at the beginning to be to find out from the PROMs what their specific version of ME is, so they can have 'personalised' care. And each time they have an annual review, they would fill them in again.

The outcomes of the PROMs would be collated for the clinic service evaluation.

The only changes would be new PROMs and energy management instead of GET as the core 'rehabilitation'.

And now we hear from Neil Riley that these PROMs and whatever training materials Sarah Tyson said they are going to produce will be the 'bedrock' of NHS clinical provision.

Which is exactly the failed model clinics have been running for years and we are begging them to get away from. I won't spell out all the problems with this. We did so in our letter.

Sigh! What on earth are the MEA thinking?

I would be really grateful if the MEA would spell out exactly what the intention of this project is.
 
Jonathan Edwards said:
None of them knows I am afraid.
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Then why the f*** did they fund it?

I think Peter Gladwell's involvement as co-lead researcher is significant. He's very senior in BACME, and it will be their therapist members who will presumably decide whether to use the 'toolkit'. If Tyson and Gladwell can persuade their members to use it, which seems quite likely, they will have ammunition for defending whatever their clinics do as having the backing of the MEA, and co-designed with patients.

My heart sinks. Is this AfME and PACE all over again?
 
MrMagoo said:
I thought there were no services for severe/very severe in the NHS?
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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.
 
Kitty said:
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.
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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?
 
Sean said:
The information gained from this project and the toolkit will provide the essential bedrock for any effective change to clinical practice and service development.

This is... disturbing.

I have never had any faith that PROMs are going to guide us to anything useful. Indeed, the over reliance on them so far is a large part of why the field is in the mess it is in.
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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
 
Kitty said:
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.
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I guess it depends how you define clinic. The point is there need to be services provided by the NHS for all severity levels. This may include an outpatient clinic for mild to moderate pwME, but also needs to include home and hospital services for those more severely affected.
 
Trish said:
This may include an outpatient clinic for mild to moderate pwME, but also needs to include home and hospital services for those more severely affected.
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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.
 
Kitty said:
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.
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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
 
MrMagoo said:
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
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Indeed - good spot/point

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