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Somewhere in the NHS PROMS info, they said the data identified recovery time was quicker where a certain brand of replacement hip was used, so then other clinics changed to that brand. Still sounds a bit more “work appraisal” than “biomedical science”to me.

I was rooting around the published accounts, I see the MeA also employed an additional short term employee to “embed” the 2021 NICE guideance Edit- I can’t find that reference now...

I feel like they aren’t being transparent. Because they’re not.

I think there are at least two different things happening with this issue and this thread. 1. The MEA have funded Tyson et al to do a piece of work, apparently in relation to a gap identified by the NICE guidelines (core data set? we aren’t sure) developing PROMS to be used in NHS ME clinics...

Aren’t many ME clinics staffed by OTs and Physiotherapists anyway?

I’m convinced (my opinion only) there is more to this, the PROMS will be used in the Long Covid clinics and in a few years the NHSwill be crowing about how it runs such great ME &LC clinics.

Definition of madness, doing the same thing repeatedly and expecting a different outcome!

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...

but the clinic won’t accept them as a patient

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?

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?

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.

Sarah Tyson explained what the gold-standard techniques were earlier in the thread.I think they’re applying the gold to the outcome measurement methods.

We’re supposed to be able to give the data or health reports to our clinicians - like they care- so they can help us. Good luck with that.

I think the FUNCAP is supposed to gather like 12 months of data, it’s to give a view over time if things vary (or not) we all have better or worse months sometimes.

The health reports are different, they’re generated from your info. It should be above health report on the profile page. Maybe the monthly FUNCAP was rolled out to paid members first? I had trouble with opening it.

I thought the letters were brilliant, thank you for all your hard work!

And a discussion from the other thread - how does funding PROMS fit the MeA’s criteria. Some suggestions were made of how they might argue it fits, I for one am unhappy that my donations are being spent on this sort of “research” (and this researcher!) I’d expect the NHS make PROMS if they want...

Some PROMS info from NHS data https://digital.nhs.uk/data-and-information/data-tools-and-services/data-services/patient-reported-outcome-measures-proms#finalised-proms-data-releases They seem mainly to have been used for surgical procedures like hip replacement

Does anyone really measure how they’ve been in “a month” I can do days, maybe weeks as a summary of great/good/bad/awful or whatever scale, but a month contains at least two extremes for me. And measuring what I can’t do is useful too. The PIP process taught me that.