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

If a public service [NHS England] is launched then it's reasonable to ask that appropriate monitoring is included --- in fact that's Government policy (even if it rarely happens) i.e. to ensure the policy is an effective use of public money. I don't see this as low level --- this is the service which implements the NICE Guideline - correct? If there isn't (appropriate) monitoring of outcomes then we're back in the PACE position --- there is a service --- national patient group has monitored outcomes & the results are positive!
I could be wrong of course!

 

Most people with a 'proper' chronic illness have an annual review, don't they? I have them for two different conditions, neither of which impact me nearly as much as ME.

Might it make sense to recommend people are reviewed annually by their GP practice rather than by ME/CFS clinics, which substantial numbers will never have attended in the first place?

If treatments the person has had are captured, it would provide something of an evidence base for the long-term outcomes. Most of them will be on the person's medical record, it's not a case of individuals needing to remember the dates or details. And a short series of questions about any recent treatment and their current work/ education/ training/ parenting/ caring status could be completed quite quickly by phone or online, at least for people who are not severely ill.

 

If those are trained well, and not from some guideline eg put together by Clare Gerada, then it gets around clinics being able to claim they can't do long-term impact because they don't do long-term care (ridiculous). I think only doing short-term measures and claiming it must be that way 'because clinics just do short term' or suggesting it ends if someone drops out either because the clinic is so poor in what it offers or someone gets iller and there is no remote options is also unacceptable.

I just don't think it is right that there shouldn't be a proper clinic because that in itself is causing oppobrium towards patients probably by overworked GPs. And if you compare it to a clinic where there is a proper biomedical clinician, as there should be for ME/CFS there is noone they look up to and would respect the instructions of.

Maybe putting it as some sort of proper KPI (QOF? Ie like asthma has payment attached to eg x% completing a yearly review) theoretically might change things, but would we trust the GP power situation and controls to not use this opportunistically? How does all of that work, and when you think about the hierarchy and workload/career for those feeding into it then is it still far too early on in what is know regarding the condition and importantly getting a decent staff base together to even think about that - because I suspect the asthma guidelines were developed with asthma consultants behind it, and not 'the head of GPs' or the like.

Is there also an issue regarding research if we don't have measures that push clinics to start taking responsibility for patients and proper medical care and decent biomedical research, that we won't have that basis for eg someone to spot similarities and try out things that might work and maybe even get ideas for trials etc?

But I'm not sure from a political perspective of there should be long-term care in clinics, and said clinics should have ways with GPs of spotting when someone is at a 'moment of truth' point eg might be about to take a big nosedive unless adjustments are quickly rushed through and be able to have urgent appointments.

I really don't think the format of offering a course is of much use, and is just used to hide resources and time from professionals which would be better spent on eg writing letters to suggest adjustments that are needed.

Most importantly it relates to a sense of responsibility for the long-term care and outcome of patients. If you only have to see mild people short term you don't know what the condition is and begin lumping them in with treated cancer patients and other different things. So it is circular for education and the false beliefs issue for HCPs.

Sorry... lots of questions

 

Once a year review in primary care is the NICE recommendation
https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#review-in-primary-care

 

Care and support plans
https://www.nice.org.uk/guidance/ng...-support-planning-by-an-mecfs-specialist-team

 

Maybe there should be an annual review PROMS

 

Yes, I'm a big fan of the 'give money directly to patients' as a control group option.