Scottish ME/CFS clinical service provision

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Amw66

Senior Member (Voting Rights)
Post copied from the News from Scotland thread


When there's the chance to start from scratch this is what we seemingly need .
MEA seems to be the go to


The H4ME team met with a Scottish Health Board to discuss a new, patient-centred service for ME/CFS/LC funded by the Scottish Government.
This symptom-focused service will be delivered by a multidisciplinary team, primarily through remote assessments in the Highlands. Patient feedback emphasised the need for validation, education on post-exertional malaise, and holistic support.
We're hopeful that all previous H4ME recommendations can be applied to this new framework.
Read more: meassociation.org.uk/41du
#Healthcare4ME #MECFS #LongCovid #ScotlandHealth
 
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Posts moved from the News from Scotland thread

the tweet said:
This symptom-focused service will be delivered by a multidisciplinary team, primarily through remote assessments in the Highlands.
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That reads oddly - it makes it sound as though the multidisciplinary team will be assessing everyone including Glaswegians primarily through remote assessments in the Highlands. I imagined a retreat with the physio and the OT at some remote but pleasant highland hunting lodge.

This is what the MEA document actually says:
To ensure equitable access across a very large geographic area, the service will primarily operate via remote assessments, with potential outreach clinics. Initial coverage will focus on the Highland region, with possible future expansion.
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'Holistic support' could mean all sorts of things. The explanation in the MEA document sounds a bit better:
  • Holistic support, including help with welfare benefits, social care, employment or education adjustments, and practical daily needs
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Hutan said:
See my post just before yours. It's worth clicking through to the MEA document, but 'remote assessment' is still vague. A video call?
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Again , severe at a disadvantage.
It's probably zoom as covering Highlands medically is a challenge . Phonecalls potentially - audio dial in on teams/ zoom are how pwME with less capacity have contributed to research / advocacy previously .
 
Hutan said:
See my post just before yours. It's worth clicking through to the MEA document, but 'remote assessment' is still vague. A video call?
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Access to symptom specific specialists will be worth watching - there is now I believe 1 pots specialist in Scotland in the Highlands .
Who will step into the breach - this looks like a potential pilot for PROMS and their app ....

Interestingly the patient input was from English areas , who would bring preconceptions re service provision based on their experience.
Could be a good or bad thing, but potentially better to start with a blank page

This is one that should be followed as it will form the model which will be rolled out elsewhere .
 
I wonder if the ME HASC liaised with the very active, well informed MEAction Sciotland Group that have had numerous discussios with the Scottish Parliament and key people involved in provision of health services.
Or have they just barged in and ignored local groups as in Suffolk.
 
My observation is linked with reference to the Scottish Parliament's Long Covid Inquiry. That needs a lot of quoting:

Long Covid Inquiry

MEMarge said:
I wonder if the ME HASC liaised with the very active, well informed MEAction Sciotland Group that have had numerous discussios with the Scottish Parliament and key people involved in provision of health services.
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Not likely since the Long Covid Inquiry examined and assessed rehab being unsuitable for some patients, with remote clinics being distinctly inadequate for clinical purposes, also distinctly inadequate for the integration of clinics with research. Dr Janet Scott et al gave this evidence.

But that didn't suit the MEAs unmet need to sell its oddly "validated" tool.

MEMarge said:
Or have they just barged in and ignored local groups as in Suffolk.
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The statistical probability is very likely the adept MEA just barged in as in Suffolk.

Since it plainly decided to rule the market instead of serving the market.

Looks like it was unspeakably ashamed to be found - discreetly - mis-using Suffolk's co-production to promote its digital substitution

But it still can't validate the MEA-branded tool of its incredible trade.

It looks like its toolkit was approved by a sample of unrepresentative patients supposed to represent everyone else, inexplicably. It was ill-advised for marketing purposes aspiring to sophisticated national registrations, as a valid, highly regulated medical software device.

Development and content validity of the Clinical Needs Assessment for Myalgic Encephalomyelitis (CNAME)

Pre-print still being reviewed by Science for ME, here

"The main limitation lies in the representativeness of the sample.

Our sample was predominantly middle-aged women with prolonged lived experience who are moderately affected.

This is consistent with other large cross-sectional surveys of people with ME/CFS

so we are confident the sample is representative.

However, the recruitment methods may have biased towards English speakers who are active on social media and in ME organisations.

The main strength of this study lies in its large sample size, co-production with people with ME/CFS and clinicians and rigorous adherence to best practice research reporting guidance."

The toolkit was also "validated" by consulting wayward "specialist" clinics, still exempted from NICE compliance, still refusing to refer malnourished patients. So the renewal of their contracts had to be assisted by the MEA, BACME and 25%. In Scotland. Because its rural.

Content validity of the Clinical Needs Assessment

"Discussion: For example, few services have dietetic input so the ability to address nutritional needs are limited

Anecdotally, some services would deal with this by developing relationships with other services to support referrals, while others would consider it beyond their remit.

There is an ethical and pragmatic dilemma about whether to ask patients about needs if the resources to address them are unavailable.

Not only could this raise unachievable hopes and expectations but also could give an inaccurate picture of how effectively the service was working within the resources available to them.

There is an argument that clinical needs assessments could be individualised to the services’ provision, i.e. to only ask about needs the service feels able to meet.

However, we advise against this, as it would limit the CNAME’s scope to support service benchmarking and improvement.

We urge services which are not resourced to meet some of the CNAME’s needs to investigate what resources are available from other services locally, so that patients can be advised and referred onwards, and/or to work with managers and service commissioners to develop services to address those unmet needs."

I see no NICE-compliant corrective advice from MEA's own dietician, and its 25% rep.
 
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MEMarge said:
I wonder if the ME HASC liaised with the very active, well informed MEAction Sciotland Group that have had numerous discussios with the Scottish Parliament and key people involved in provision of health services.
Or have they just barged in and ignored local groups as in Suffolk.
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I believe that MEAction Scotland have been in touch with the clinicians from the LC service this month ( so a fait accompli) .

Elsewhere there was talk of a grant application by the LC lead to set up a platform for trials for treatments - establishing clinical support would feed into this.
Theres a £4.5m fund for long covid which was a political embarrassment as it wasn't being spent and has been prioritized and now includes ME/CFS So that probably has attracted MEA, Elaros, BACME et al.
 
Amw66 said:
Theres a £4.5m fund for long covid which was a political embarrassment as it wasn't being spent and has been prioritized and now includes ME/CFS

So that probably has attracted MEA, Elaros, BACME et al.
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The Government was reminded that this fund obviously needs to be an annual commitment. A new Lead had re-oriented the Long Covid Network, committing it to sustainable provision, with a broader post-viral remit.

So now its an annual budget - still open to a rehab remit. No doubt coveted by competing parties - MEA et al, and the FND cohort last seen courting the new Long Covid Network lead, Dr Scott, who was quite polite and by now assesssed it

I had judged Dr Scott upon her trusty report to the Long Covid Inquiry, and its provenance. After that she stepped into the political embarrassment, appointed to lead the LC Network, maybe to end its embarrassment, just before it was outed by the vastly distressed resignations of Long Covid Scotland & Long Covid Kids.

Their joint announcement is here. The LCS video for sharing is here. A detailed LCK statement by text is here. All this news, and more, on page 6 of this thread.
 
Hutan said:
Thanks to all the posters. That's looking pretty worrying for ME/CFS and Long Covid care in Scotland - possibly many steps backwards?
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No, according to the news from Scotland, I think more steps forward than backward regressors can drag down. Its just not clear to me how Long Covid Kids and Long Covid Support got on with the new Long Covid Network Lead.

And if she is achieving what she set out to achieve in 2023, since everyone spelt out all the problems to solve. Surely Parliament is better informed than the MEA:

MEMarge said:
... the very active, well informed MEAction Sciotland Group that have had numerous discussios with the Scottish Parliament and key people involved in provision of health services.
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Maybe also the commissioners are so close to the edge they will not forget "Buyer beware". Plainly face-to-face, hands-on clinics are required.

Amw66 said:
Again , severe at a disadvantage. It's probably zoom as covering Highlands medically is a challenge .
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The Scottish Long Covid Enquiry already examined this medical challenge in isolated rural areas. Obviously the trading MEA and trading partners determined a strategy to overturn the Inquiry's 2023 advice, then claim victory as if its all done for us
 
Amw66 said:
Phonecalls potentially - audio dial in on teams/ zoom are how pwME with less capacity have contributed to research / advocacy previously .
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Big problem with bulk-processing systems requiring communication. Phoning or surfing into digital meetings requires technical know-how and technical support. Not available from the remote teams operating such meetings. They often don't even know if - or how - its possible to phone into a video conference.

Its luck of the draw if there is someone with extra technical competence on the team. Then people phoning in must be shepherded, and especially facilitated as they do not have any of the cues the surfers have. This too can go beyond the competence of teams offering remote meetings. Its a lot of trial and error

Such digital trial and error is vastly inappropriate as a national health service.

All sorts of severe conditions may also need help in the home to note and use entry codes for phone-ins, but these details do not concern greedy people trading in digital platforms on a post-pandemic scale still set to increase for ever.

And the NHS will not pay staff to spend time on digital platforms reading patient reports. Competing digital platforms already got the hospital and GP contracts for the outpatient interface. Notably, the NHS won't read any outpatient's "self-help" reports.

So in many ways, an ME/CFS/LC app cannot be the saving its made out to be, by ambitious trading partners speculating in our brave new NHS. And - pssst - up to 25% don't do apps anyway. Do I hiss or can I cackle?

Then there are complex evolving protocols & industry standards for data protection, recording, record-keeping, accuracy, amendment, transparency, and the digital replacement of human operators, eg offering companionship to isolated targets.

Not to mention access, diversity, equality and inclusion, all things notoriouly banned in some places. Eg "specialist" clinics distinctly excluded ALL severe cases for decades to date. So they think MEA's Project Manager can help renew their choosy contracts.

Even Colin Barton (MEASussex), the high-society ace, said severe cases are insupportable. I heard he even helped Professor Tyson with her trials and tribulations.

All I've seen of recent MEA designs says its way out of its digital depth, since mutating into one of the few remaining bureacracies with priviliged position, a captive market and all designed for its own convenience only, while mouthing off about superb customer services being currently improved due to some blips.
 
bicentennial said:
The Government was reminded that this fund obviously needs to be an annual commitment. A new Lead had re-oriented the Long Covid Network, committing it to sustainable provision, with a broader post-viral remit.

So now its an annual budget - still open to a rehab remit. No doubt coveted by competing parties - MEA et al, and the FND cohort last seen courting the new Long Covid Network lead, Dr Scott, who was quite polite and by now assesssed it

I had judged Dr Scott upon her trusty report to the Long Covid Inquiry, and its provenance. After that she stepped into the political embarrassment, appointed to lead the LC Network, maybe to end its embarrassment, just before it was outed by the vastly distressed resignations of Long Covid Scotland & Long Covid Kids.

Their joint announcement is here. The LCS video for sharing is here. A detailed LCK statement by text is here. All this news, and more, on page 6 of this thread.
Click to expand...
Was Dr Scott not part of a research team who published a paper recently.
I think from memory that there were issues discussed here , but with 2 hours sleep I could be wrong .

The trials platform proposal raised red flags for me due to the blurb on lead researcher - trained under mike beardsworth and peto.
 
Preceding posts have been moved from the News from Scotland thread

I'm starting a thread , kicking off from my post in News from Scotland.

A

Post in thread 'News from Scotland'

When there's the chance to start from scratch this is what we seemingly need .
MEA seems to be the go to


The H4ME team met with a Scottish Health Board to discuss a new, patient-centred service for ME/CFS/LC funded by the Scottish Government.
This symptom-focused service will be delivered by a multidisciplinary team, primarily through remote assessments in the Highlands. Patient feedback emphasised the need for validation, education on post-exertional malaise, and holistic support.
We're hopeful that all previous H4ME recommendations can be applied to this new...
  • Like


Given there is virtually no service provision here this is a huge opportunity -it's my understanding that NHS Highland with Janet Scott are also looking to investigate treatment options; clinical services establishes a cohort .If done well could be a gamechanger.

Given timing though, it may also be the testing ground for the MEA app and BACME current model. It may also feed into implementation of the Delivery Plan so it's worth keeping an eye on and following how this is procured and how it beds in.

If anyone finds info relative to this, please post to this thread.

Tagging @dave30th, @Jonathan Edwards as it may be of interest.
 
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Jonathan Edwards said:
This looks very much like a rollout of the usual BACME stuff - multidisciplinary, holistic, patient centred - all the wrong buzzwords. And no substance. What treatment options?
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It sounds like an opportunity to grab a share of the funding for...well, something, we can work out the details later.

If they promised access to basic healthcare and twice yearly review I'd be genuinely excited.
 
Jonathan Edwards said:
I don't know Janet Scott. Are there any trials to do? Do they need a 'platform'?
Have we got threads on this.
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No. Not yet. This is partly why I started this thread as there seems to be various initiatives that could coalesce , and it may not be positive , though folks don't seem to want to be aware of pitfalls. I'm probably one of those categorised as " overly negative" .

It's not really been announced as far as I'm aware . There was a funding application and it seems to have been successful . Perhaps Sonya can fill you in as AfME were supporting it. I raised issues and didn't hear any further when they were looking for PPI input, so was probably backfilled.

Janet Scott heads up the NHS Scotland Long COVID team , she was appointed / stepped in when it was a political disaster area . The remit now includes ME/ CFS .
She has an infectious disease background . Her training mentors are questionable . She may of course not be anything like them. ( Hopefully) .
 
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