Scottish ME/CFS clinical service provision

[Amw66]

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

A

Post in thread 'News from Scotland'

Friday at 7:24 AM

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...

• Amw66

• 

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.

 

[Jonathan Edwards]

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?

 

[Kitty]

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?

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.

 

[Amw66]

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?

I believe Janet Scott has applied for funding to establish a platform for treatment trials .

 

[Jonathan Edwards]

I believe Janet Scott has applied for funding to establish a platform for treatment trials .

I don't know Janet Scott. Are there any trials to do? Do they need a 'platform'?
Have we got threads on this.

 

[Amw66]

I don't know Janet Scott. Are there any trials to do? Do they need a 'platform'?
Have we got threads on this.

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) .

 

[Amw66]

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?

This is the MEA s proposal . Given they seem to be working hand in hand with BACME and app developers it's a bit like the King is dead , long live the King .

 

[MEMarge]

This is the MEA s proposal . Given they seem to be working hand in hand with BACME and app developers it's a bit like the King is dead , long live the King .

Have you been in Touch with MEAction Scotland? They've been having discussions with Scottish Parliament for years.

 

[Amw66]

Yes.They are engaging re clinical service, but given the lack of involvement prior I don't know how much influence they could weild