The HERITAGE study (Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE)

[Kitty]

Something I have thought for some time would be useful is if a supportive ME organisation brought together a group of people, including someone who understands the weeds of the NHS service commissioning processes, to thrash out what a decent ME/CFS service would look like in practice, & produce and publish a model & design for a novel service offering supportive medical care, including details of the tailoring such a service would require for the needs of severe & very severe patients.

My main thought on that is, what happens if we find a good drug candidate in the next year or two? We seem to be closer than we've been before, and even if there could be a significant delay because strong initial trial results need replicating, it will have a major effect on the type of provision we'll need.

It's the difference between a treatable disease, for which there are various NHS models, and a disease with no treatment options, for which the usual practice is diagnose and discharge to GP.

 

[Amw66]

Something I have thought for some time would be useful is if a supportive ME organisation brought together a group of people, including someone who understands the weeds of the NHS service commissioning processes, to thrash out what a decent ME/CFS service would look like in practice, & produce and publish a model & design for a novel service offering supportive medical care, including details of the tailoring such a service would require for the needs of severe & very severe patients.

Those on the other side of this already have their own such resources, including commissioning guidance for a network of generic MUS/PPS clinics (link) that came out of a process involving the RCs - and, of course, BACME's guides.

A few posters here have discussed over the years what a decent service might look like, but AFAIK there are no published alternative service designs or resources anywhere to be found. The major national charities seem all too happy to collaborate with whatever BACME & the NHS cook up.

Is this not what @Suffolkres has been doing ?

 

[Suffolkres]

Is this not what @Suffolkres has been doing ?

I correct you. We have been trying to that very thing.
A model Spec
A model Pathway
The agreed contractual procurement time frame. 5 years
The agreed ring fenced money £5.4 million
An endorsed Co produced business plan
Preferred provider with suggested workforce model With suitablw clinical lead
Contractual award
Mobilisation
Handover
Service commencement .....
What could possibly go wrong...???