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

[Kitty]

So how do people applying for benefits get reports from their specialist to include in their application?

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.

And who is supposed to do the liaising with employers and schools if not the specialist nurse?

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.

 

[Trish]

Specialist nurses might do it, but I'd be surprised if consultants did any kind of liaising beyond a prognosis letter for employers.

I guess that's what I meant. I agree I wouldn't expect ongoing liaising. A letter to my employer and later to the benefits agency would have been helpful.

 

[Felis Catus]

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]

The video from Binita Kane on the UK news thread is relevant.
She is essentially following the suggested physician-led model but does make use of off label drugs and non-evidence based non-pharmacological approaches.

 

[Sly Saint]

return to the service model prior to 2003

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'.

 

[Suffolkres]

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.

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...

 

[Robert 1973]

Very cost effective. Figures available.

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]

The video from Binita Kane on the UK news thread is relevant.
She is essentially following the suggested physician-led model but does make use of off label drugs and non-evidence based non-pharmacological approaches.

Thread: https://www.s4me.info/threads/unite...read-for-news-from-scotland.29404/post-677765

YouTube video:

 

[Utsikt]

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.

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.

 

[Jonathan Edwards]

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.

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.

 

[Suffolkres]

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, 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.

 

[Jonathan Edwards]

I would like to send a draft of the suggested service format to the others on the ForwardME service group on Wednesday morning. I think we may have a meeting in the afternoon and we had talked about proposals for a service format last week. I can say that it is something that has arisen on S4ME and which I am currently developing with input from others.

 

[Sean]

Looks good to me. Thanks to all who contributed.

One comment, and one suggested minor rewrite:

​

Simple advice on judging activity limits based on personal experience is all that is justified.​

This is the core of activity advice. Any activity. Explain to patients the basic concept of PEM and the importance of trying not to trigger or exacerbate it, without getting too detailed or 'advisory', and let the patients do the rest to figure out how it works for them. They will have to anyway, regardless of what the clinicians tell them. All clinicians can do is help reduce the initial steep learning curve for the patient, and then get out of the way.

Moreover, there are no evidence-based interventions. There are therefore no ‘goals of therapy’ to be set and no relevant assessments of ‘treatment success’ such as patient reported outcome measures.​

Suggested: Moreover, in the absence of evidence-based interventions there can be no ‘goals of therapy’ to be set and no relevant assessments of ‘treatment success’ such as patient reported outcome measures.

In short, the clinician's job at this stage is basically diagnosis and standard generic mitigation and support available for all chronic conditions.

 

[BrightCandle]

Its better with domicillary care but it still wont change how I am being (not) treated. Without self referral it all depends on a collosial culture change, and when my GP is refusing to read even the guidance let alone do a training on the disease despite admitting she has hundreds of such patients now that change is going to have to come forcefully from the top in a requirement or its not going to work for people who have GP offices like mine.

 

[Jonathan Edwards]

Its better with domicillary care but it still wont change how I am being (not) treated. Without self referral it all depends on a collosial culture change, and when my GP is refusing to read even the guidance let alone do a training on the disease despite admitting she has hundreds of such patients now that change is going to have to come forcefully from the top in a requirement or its not going to work for people who have GP offices like mine.

OK, but that is an issue outside the current suggestion for a service format. I am sure we are all keen to see a forceful edict from the top. This is just what we think might be useful if that edict is in place. Nobody is offering to discuss edicts about referring. They are offering to discuss what to refer to.

 

[bicentennial]

So it should at least include a clause of continuation of formerly effective treatment even if off label. Staff there love to go: “let’s first stop all your medication and see if that fixes things” in my experience which can cause real and immediate harm.

Is this only done to suspected patients? I had thought NHS hospitals routinely removed existing prescriptions from all patients upon admission.

It was a very problematical procedure: very stubborn when an unusual dosage or recipe is effectively relied on, but then replaced with a standard hospital prescription.

I guess that a hospital is liable for medicines allowed to inpatients, so it will prescribe as it sees fit, from scratch and without unpredictable combinations.

Also because many older patients accumulated large prescriptions of many drugs cobbled together piecemeal over years, with no GP able to keep track.

These patients were routinely admitted to hospital to review their cocktails. But then I heard that !! Rapid Access day-patient Clinics !! took on that remit.

The RAC has a gentle low-stimulus environment for fragile people and access to all the advanced test technology and expertise of Accident and Emergency. With a very interesting range of remits. One RAC in Sussex may be most accessible.

It is a massive problem if doctors cannot work out and monitor an optimal prescription. It needs much comprehension to tailor and apply a prescription formula achieving variable blood levels within a safe, effective range.

There are several potential problems particular to ME/CFS when prescribing drugs. I gather this potential must not be dangerously prohibitivem but it may need ascertaining, while some dictate a reduced dosage for everyone of everything for starters, and I just say no drugs for me.

Doctors will need clinical software to pool and develop the outline of procedure to proceed with caution on all sides. The decommissioned framework allowed a vast variety of experimental therapists a free hand making no safe sense at all, not monitored, taking diversity way too far.

 

[Trish]

Its better with domicillary care but it still wont change how I am being (not) treated. Without self referral it all depends on a collosial culture change, and when my GP is refusing to read even the guidance let alone do a training on the disease despite admitting she has hundreds of such patients now that change is going to have to come forcefully from the top in a requirement or its not going to work for people who have GP offices like mine.

I'm really sorry to hear your GP is so unhelpful. If you don't have the option where you live of changing GP, I still hope the sort of consultant led service we are suggesting might help. I would hope knowing there is a consultant service to refer pwME might prompt our GPs to start referring us, if only to get us off their hands.

 

[BrightCandle]

I'm really sorry to hear your GP is so unhelpful. If you don't have the option where you live of changing GP, I still hope the sort of consultant led service we are suggesting might help. I would hope knowing there is a consultant service to refer pwME might prompt our GPs to start referring us, if only to get us off their hands.

An ME service exists already, I have been refused referral. This is true across the country, its an extremely common problem and one we ought to be proposing to workaround as part of our wish list, if nothing else to say that any design that fails to address it will fail most patients.

 

[Jonathan Edwards]

An ME service exists already, I have been refused referral.

it doesn't really. A pretend service does. Refusal to refer to a pretend service is understandable. I would not refer to the current "service", to spare the person with ME/CFS the likely resulting grief.

The need to get referrals standard is a good point but I think it would distract from the object of this exercise - to indicate what service might be worth having.