A thread on what people with ME/CFS need in the way of service

Trish said:
So how do people applying for benefits get reports from their specialist to include in their application?
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That's what I meant by info about the condition and prognosis. The routine letters that are sent to the GP after every appointment would form part of the evidence base, and the consultant might provide a letter setting out the prognosis to the employer. That happens in cancers requiring chemo, surgery and radiotherapy, where people are expected to be absent from work for at least a year.

Trish said:
And who is supposed to do the liaising with employers and schools if not the specialist nurse?
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I don't know, I didn't have a specialist nurse whilst I was still working and am not aware of anyone else who did. Specialist nurses might do it, but I'd be surprised if consultants did any kind of liaising beyond a prognosis letter for employers. Schools might be different; we don't have any children in our family so I've no experience.
 
A couple of long letters which described well how I was affected were written by private consultants. The rest of the letters (NHS or private) are rather brief and don't go much beyond diagnosis, main symptoms and prescriptions. They certainly prove the presence of a problem or problems but not how that translates to daily life. Reading that someone experiences fatigue can be almost meaningless to a healthy individual reading the letter and thinking the employee/kid/benefit claimant just needs to take a longer lunch break and chill in the evening.
 
Jonathan Edwards said:
return to the service model prior to 2003
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Which was do nothing other than maybe prescribe anti-depressants. My GP (2001-2006) completely relied on me to tell him what if anything I wanted to try. But even then he either had to invent reasons for any tests or prescriptions which were regularly refused by the NHS. And all I had to go on was 'information' via AfMEs magazine, and an old book that someone lent me.

The first few years were consumed with dealing the practicalities of no longer being able to work , navigating the benefits system and assessments, the constant guilt that brought with it, and dealing with an unpredictable illness that would not improve no matter how hard I 'tried'.
 
Jonathan Edwards said:
It is almost certainly unrealistic, although even that i am not entirely sure of. Things may suddenly start changing. I am assuming that it is unrealistic to think that policy will shift directly to what is suggested but the current DHSC proposal is actually extremely vague - so vague that in fact it could probably allow the suggested format to be set up by a commissioning group. I think there is at least a chance that the DHSC will shift to a position where it is more explicitly allowed.

If not, the goal is to try to get everyone involved to have some appreciation of the absurdity of the current DHSC wording of a rehab-ish service for mild/moderate and forget the others. And moreover, to appreciate the absurdity of the rehab model. I think that provides a chance for getting a better result from any local negotiations that follow. In one sense the whole thing is a juggernaut. But, as Suffolkres has established, it is also a fabric of individuals, some of whom can make sensible decisions.

There is a lever, in that if, as the DHSC say, they will look again at severe services, they may realise that you cannot really do that without a different format.

At the moment we have very few physician-run services, but there are just a few. There might be more soon. Getting physicians with a hospital base rather than community trusts may be the biggest sticking point but I don't think that should be allowed to slide without making it clear that it is not the best answer.

This suggested proposal is not a demand, or even an ask, so much as a suggestion of what seems to make sense. This is only a 'consultation' process. I see no point in watering anything down. That is what has happened up until now and it has been a disaster.
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Contracts for Services
To avoid formal Tendering by going Direct Award.
(Cheaper and more convenient to avoid public scrutiny!)

There are 3 formal tendering routes ICB use foremost as commissioning authority, as per new Procurement rules 2025.


1. Trust Hospital Based and Hospital Community services.

2. Divested Community Services in the form of Community Interest Companies (CICs) who report to Companies House annually. Do not hold meetings in public or release minutes......

3. GP Consoria (also CICs) Who have their own contracts for Community Services (often serviced by outreach Hospital Consultants, eg Cardiology.)

4. Private Prividors can also bid for tender during formal procurement.

Dr Mitchell ran a hospital based Specialist Service from Pajet Hospital under haematology. Till around 2005.
His model worked, served SAs and 30% domiciliary visits. Ongoing care and review with reports for follow up and benefits.

Very cost effective. Figures available.

Provided education and training.

That's what we had till the powers that be ignored all coproduction and Lived Experience from 2006.
20 years later, we in Suffolk are in with a chance again...
 
Suffolkres said:
Very cost effective. Figures available.
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I’m thinking that it would be useful to estimate the cost of our proposal as accurately as possible and compare that with the cost of existing services.

Would anyone here like to volunteer? If not, perhaps someone from FME or one of the organisations they represent may be able to do it – if there is agreement about the proposal.
 
Robert 1973 said:
I’m thinking that it would be useful to estimate the cost of our proposal as accurately as possible and compare that with the cost of existing services.
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For what purpose?

It will depend on so many assumptions that it’s probably very difficult to estimate. My guess is that it will be cheaper than MS because there are no treatments to pay for yet.
 
Utsikt said:
It will depend on so many assumptions that it’s probably very difficult to estimate. My guess is that it will be cheaper than MS because there are no treatments to pay for yet.
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I agree. It will be ridiculously cheap in comparison to most other disabling diseases, however one does it. But the Suffolk experience may well provide the costings.

It has been argued that commissioning from a hospital will be more expensive than from a 'community' authority. That may be true because of finance artefacts but it seems to me such artefacts should not kybosh a decent service. Asking for a community based service because it is cheap and cheerful seems to me an admission of defeat.
 
Robert 1973 said:
I’m thinking that it would be useful to estimate the cost of our proposal as accurately as possible and compare that with the cost of existing services.

Would anyone here like to volunteer? If not, perhaps someone from FME or one of the organisations they represent may be able to do it – if there is agreement about the proposal.
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Robert, MELN have people attending FME.
On the MELN internal delivery group, work has been progressing on these issues.

One of our members (who is an SA), has an intimate understanding of preparing the framework process to present a costed, business framework and spec to be presented to our clinical Exec in 2024.

I was not involved with that detail, so can say no more.
This exercise was under co-production TOR.
No need to reinvent the wheel!
The necessary knowledge is out there.
The model has been tested through due process. It delivered a creditable result.
 
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