The MEA has not been at all clear as to what the assessment tools would be used for. But, yes, my understanding is that one of the uses will be to evaluate whether the clinics are delivering benefits. That will be a clinical audit, or at least part of an audit. Just not a very good one.
to evaluate clinics it needs a survey written and administered independently that focuses specifically on asking what is being received by patients and how useful they found it.
for example if there is support with forms or statements for employers, benefits, equipment. if they did what they can to describe pacing appropriately and make it more possible by these adjustments and so on. If they appeared to have a sufficient understanding or will to understand when at an individual level they were trying to help someone for example come up with a plan if they might need to make their house accessible or work out whether a wheelchair would be useful for them.
there is something quite specific about me/cfs in the type of disability and in how the patient themselves might understand it early on vs once they've done trial and error on pushing themselves or kidding themselves and so there is a real importance in how to tackle that problem where communication styles and 'telling people what they want to hear' by making fake promises of 'maybe this will help' are used.
So the art of the questions asked would need to be ruling out any ambiguity at all - no terms like 'pacing' (energy conservation) where everyone can be told a different idea of it is that. It needs to be made clear that twisting the expectation someone writes a letter to an employer to make it clear reasonable adjustments are needed into a clinic overstepping the mark and using that position to hold as power over the individual would go the opposite way. Same thing to capture the issue where we have heard of clinics using 'multidisciplinary meetings' to make up untruths and fake narratives about a patient and fake safeguarding etc. So there almost certainly need to be red-flag questions too.
The end result being whether the clinic is meeting the basic criteria for which they should be funded. ie level 1 = they just about manage to diagnose but to reach 4 or 'gold' they need to be providing good adjustment/benefits support at a reasonable level, autonomy and people feeling safe and not coerced.
ie it needs something very specific and very direct. And who and how it is administered is just as important.
But on the other hand it seems like this PROMS project appeared out of nowhere and then suddenly we were finding out there was something to do with datasets in the implementation plan etc.
where those datasets are more to do with things like the basic prognosis data we should have - what % recover in the 1st, 2nd, 3rd year of being ill
if they get suitable rest etc. and then once it is past that stage we believe it is 5%. But medical records were using silly assumptions like if people didn't come back to a GP for x years then it must have been because their 'cfs' had 'recovered' rather than they had it and it got worse but the GP had made it clear there was no help.
And yes if adjustmetns and support aren't put in place then unless that is coming from somehwere else then I think most of us will get more severe. But for some reason it seems the 'system' and almost all of those in it are doing everything to want to believe that we all just disappear off and don't get more debilitated and unwell but something else.
I don't fully understand how we can tackle that one - it needs a thread all on its own because the data input points are so compromised I suspect it is 2 parts in order to start uncompromising those input points eg how do you make a GP put accurate not inaccurate data on a record when beliefs get in the way etc. And why don't other conditions have this issue.
but putting it into the same project, along with loads of other promises just compromised what was being measured. So in some way I'd have sympathy if that expectation had been 'done to' Sarah and the team. Because you can't have a one size fits all and it do
anything appropriately. Quite simply because you then are basically dropping
all research design, as you can't truthfully have a research design for 'all possibilities' that's the point of research design is to answer a question. Accurately. By making sure the data pool is collected accurately to the question and intended usage etc.