The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

Hutan said:
The outcomes seem to be patient satisfaction with the clinic/app i.e. (paraphrased from memory) 'Do you feel you know more about your condition now? Do you feel better able to manage your condition?'
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That seems about as useful as doing all the same things for a homeopathic clinic. The clinics don't have anything to offer, so how can their performance be achieved? The very best they can do is give out the equivalent of a one-page pamphlet that contains accurate information.

Of course I say this with the hindsight that I likely made myself disabled by not actually being careful, something that would likely be different if I has been given accurate information, but I can hardly see those sorry excuses for clinics to have the kind of effect that is needed here. They would have to be able to learn, and so far almost no one in the profession even seems able to.

It's just impossible to trust any health care system to do the right thing with the data. Not without a full reset on everything that recognizes the disastrous mishandling and forces real change. This is basically a coat of plaster on a wound, not even the medical kind.
 
Out of interest, does anyone know of any ME clinics doing 1-1 work with patients?
Having gone around the referral route recently, the two at opposite ends of the country were both offering online group sessions. I think there was an initial assessment and diagnosis appointment but after that, you’re just one of the group.

How many burning individual personal progress questions are these OTs and Physios answering currently if all the work is with “the online group”?

Is anyone (who isn’t ourselves) going to produce a care plan for us?
 
Another thing I gleaned from the webinar that I want to record before I forget. The session was started with a short introduction from Russell Fleming who has a senior role in the MEA. He spoke about about the origins of the Clinical Assessment Toolkit project. The MEA was involved in some way in advising on the setting up of the ME/CFS service in the Isle of Man.

The IOM funding authority or health authority, I'm not sure which, wanted there to be a way of assessing the effectiveness and cost effectiveness of this new ME/CFS service. The MEA decided there needed to be a new ME/CFS specific set of tools to assess ME/CFS clinics. Sarah Tyson wrote the bid for funding and submitted it to the MEA and they funded it.

So it sounds like all the blather about it being designed to make provide better symptom and activity management and to support care planning etc. is a smokescreen. It's really intended for clinicians' benefit so they can 'prove' they are worth funding.

Hence pehaps the long list of symptoms in the first questionnaire, many of which if they are helped at all are likely to be by the person's GP - sleep, pain, nausea, allergy meds, eyedrops for dry eyes, minor dietary changes for flatulence, etc. So they get ticked off on the list as improved and hey presto the clinic is effective. And lots of hopium in the clinicians guide that hasn't worn off by the end of the short rehab course, so patients give the clinic a good rating.

Sorry to be so cynical. All this time spent digging into the BACME stuff and this toolkit is so shattering, even 4 years on from peak hope for better services with NICE.
 
Trish said:
Another thing I gleaned from the webinar that I want to record before I forget. The session was started with a short introduction from Russell Fleming who has a senior role in the MEA. He spoke about about the origins of the Clinical Assessment Toolkit project. The MEA was involved in some way in advising on the setting up of the ME/CFS service in the Isle of Man.

The IOM funding authority or health authority, I'm not sure which, wanted there to be a way of assessing the effectiveness and cost effectiveness of this new ME/CFS service. The MEA decided there needed to be a new ME/CFS specific set of tools to assess ME/CFS clinics. Sarah Tyson wrote the bid for funding and submitted it to the MEA and they funded it.

So it sounds like all the blather about it being designed to make provide better symptom and activity management and to support care planning etc. is a smokescreen. It's really intended for clinicians' benefit so they can 'prove' they are worth funding.

Hence pehaps the long list of symptoms in the first questionnaire, many of which if they are helped at all are likely to be by the person's GP - sleep, pain, nausea, allergy meds, eyedrops for dry eyes, minor dietary changes for flatulence, etc. So they get ticked off on the list as improved and hey presto the clinic is effective. And lots of hopium in the clinicians guide that hasn't worn off by the end of the short rehab course, so patients give the clinic a good rating.

Sorry to be so cynical. All this time spent digging into the BACME stuff and this toolkit is so shattering, even 4 years on from peak hope for better services with NICE.
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Nope not cynical. I agree this loop is part of it all

and remember the post from sarah talking about knowing someone involved with IOM earlier in this thread - oh actually it was the PROMs thread where initially she was replying to lots of posts until...

Just always stand back if someone has pointed to it who is also on the inside to make sure the pieces have been put together right - when something is ‘made to seem simple’ and all.

For example wasn’t the Iom a long eventually hard-won by those involved situation ie for those outside it but interested I don’t know how quickly or knee jerk that meant anything was

And of course the same with the new guidelines and those with power having years of writing on wall deciding how much to do right thing vs … well what they’ve done etc happening during an overlapping time period
 
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Trish said:
Another thing I gleaned from the webinar that I want to record before I forget. The session was started with a short introduction from Russell Fleming who has a senior role in the MEA. He spoke about about the origins of the Clinical Assessment Toolkit project. The MEA was involved in some way in advising on the setting up of the ME/CFS service in the Isle of Man.

The IOM funding authority or health authority, I'm not sure which, wanted there to be a way of assessing the effectiveness and cost effectiveness of this new ME/CFS service. The MEA decided there needed to be a new ME/CFS specific set of tools to assess ME/CFS clinics. Sarah Tyson wrote the bid for funding and submitted it to the MEA and they funded it.

So it sounds like all the blather about it being designed to make provide better symptom and activity management and to support care planning etc. is a smokescreen. It's really intended for clinicians' benefit so they can 'prove' they are worth funding.

Hence pehaps the long list of symptoms in the first questionnaire, many of which if they are helped at all are likely to be by the person's GP - sleep, pain, nausea, allergy meds, eyedrops for dry eyes, minor dietary changes for flatulence, etc. So they get ticked off on the list as improved and hey presto the clinic is effective. And lots of hopium in the clinicians guide that hasn't worn off by the end of the short rehab course, so patients give the clinic a good rating.

Sorry to be so cynical. All this time spent digging into the BACME stuff and this toolkit is so shattering, even 4 years on from peak hope for better services with NICE.
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That’s really interesting Trish. I always said the comms around the Tyson project felt like there was stuff in the background we weren’t being told - and not in a paranoid way, it just didn’t quite gel together properly so there had to be some facts or background missing. It never seemed like an organic thing. Now we know why - there was a whole organic background in IOM and many conversations and agreements from long before the “look what we are funding” announcement.

In fact it seems rather odd they didn’t tell that story, because why not?
 
MrMagoo said:
Is this a story for The Canary? I feel like this needs to be widely known.
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Which bit of it needs to be widely known? The MEA funding questionnaires designed to prop up NHS clinics, the MEA supporting NHS clinics run on BACME lines, the questionnares being designed more to enable clinics to claim cost effectiveness rather than to genuinely help pwME? They would doubtless challenge all that with their boasts about thousands of pwME being involved and lots of positive feedback.

When the questionnaire project was first introduced by the MEA some of us welcomed the possibility of something better than the Chalder, SF36, HADS and other inappropriate PROMs. It was only when we saw the mess being made of it we started protesting. I think NICE had better PROMs as one of the research areas needig funding. So the MEA may have been justified in its ambition to have a truly patient led set of PROMs. Sadly it has backfired with the wrong people leading it.

So no, I don't think now is the moment for a Canary article. If we manage to get together a really good article and/or position statement challenging BACME, and add the clinical assessment toolkit to it, then maybe the Canary could draw attention to it.
 
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