United Kingdom: News from Forward-ME Group

I think that an understanding of this is probably v useful for making smart proposals.

I do think that things can move slowly and contracts don't tend to be longer than 3yrs - which might be the amount of time to persuade areas of alternatives. So I think that time to contract is a good way to categorise, but it probably is 'rush job' vs 'enough time'

I say this thinking that many of these contracts are not 'tweaks needed' - they have the wrong staff make-up entirely with contracts themselves being based on 'delivery of x course' rather than 'medical care/oversight of condition'.

They do need to get rid of these though. It seems like some decent documents could be used across all of these - tick boxes of what is needed as a proper service, and interim (1-2yrs) like a risk assessment.

For the non-interim the replacement is no small task, so defining a few options A, B, C with what might be involved with them and meetings that need to begin happening sounds like something that needs to be being fed through. That gives something for charities to check on as well - have you arranged your stakeholder meeting or whatever - progress on the 10 point plan. It hopefully ensures these things get 'put on the calendar'.

I do hope that these new working groups can come up with 'ideal set-ups' and interim OK ones. Without clear lines that this will move to something different the temptation is to backburner and hope it goes away vs all the other 'urgent' stuff. And these old services are probably v aware.

My gut is that really these services need to be based around severe/very severe so that it is proper medical care of the whole spectrum ie the 'person' with the condition. The solution to this is not of course asking services that are naff for mild/moderate to expand themselves to severe but to point out just how inappropriate they are that they aren't even watching whether and preventing deterioration.

I think that this 'gap' - even in articulation currently - is a big issue because it's about time for ME/CFS we got some 'this is' rather than 'this isn'ts' and worked towards some workable things rather than battling with something inappropriate to begin with who will use the 'continual compromise' strategy to not change.

 

I feel the same. Services seeing people who are primarily mild and still able to do quite a lot of things with careful management, indeed who are able to put other things on hold while attending an outpatient clinic, leads to a very different understanding of the condition than seeing people who are very severe, when just a single visit to their home has implications for their health over days, weeks or even longer. Also we need services that understand their main objective, given our current knowledge, is not to get people better but to stop more people becoming severe or very severe.

I suspect that we would achieve better results by scrapping existing services completely and starting again completely from scratch, but whether that is politically or financially feasible is another question.

 

Keeping the same clinics enables them to carry on as they always did, with CBT and GET, just by tweaking language and calling them something else.

 

It feels so out of reach to get to the basics that a severe patient if being seen in a hospital gets a darkened room that is quiet where they can lay safely and bring their own medication and then only one doctor ever comes in to make any essential conversations minimising concern and they do everything they need to in as short a time as possible with as minimal impact to the patient as possible, all the while never requiring them to exert. Its obviously what should be possible with the NHS but it feels like a complete fantasy when a severe ME patient can't even get seen at home by a specialist ME/CFS service and a GP wont even diagnose the condition at all. A tweak of the system is not going to be enough, starting again with specialists that aren't physiotherapists and psychologists is necessary.

 

I agree. There are some good ones that are medically-based, but perhaps these are identifiable in various ways and need work on to ensure that succession-planning (where often these services have historically changed significantly) improves rather than erodes good aspects.

I love an analogy and the issue is just how many you'd need to layer in to show how bad and silly most of the current ones are. The whole thing is ridiculous.

I struggle to see how things are made better by not announcing a clean break and allowing the hangers-on to redeploy and find somewhere their skills will be useful. It isn't as if most have even shown a change in attitude that makes one think they are capable, and business models based on 'fatigue' where their services aren't even attended by those who have the condition and fill bums on seats with those who don't aren't going to add up if they start having to care about who comes in and what state they are in following their 'care'.

They've been offering a transactional 'sales' model of short courses where they only had to get people in the door via selling to referrers based on claims it 'recovers' people that are emperor's new clothes - both 'reality of the illness and how people do' and 'their service being worth the money' cannot co-exist and the former will continue to be attacked and sacrificed to the needs of pretending the latter. It's snake oil all this 'recovery' talk and they won't even see it, just write a new psuedophil manifesto to justify carrying on regardless. There is a safeguarding and power issue putting a vulnerable group 'under' people who will need to do this.

Why is noone insisting that this (medical assessment over lifecycle/lifetime) is the core of any service? And I do think that a service needs to be set up to step in when they are those key points of illness to offer intensive one-stop-shop support in a way a GP couldn't which will often be when someone changes severity. So the idea of somewhere doing a short course and breaking up severities is a laugh when that should be the mainstay of where a difference could be made, and learning (from someone genuinely curious) could happen quickly.

If staffing is the issue then get scientists trained with enough ME/CFS relevant medicine (biomed area + clinical skills requirement) that they have the weight to be heard on this. Without independents seeing all patients and whether they go up or down vs changes in treatment or lifestyle without the politics and allegiances, it'll just carry on being people focused on justifying the worth of what they do rather than focusing on patients or the condition.

 

The main challenge to 'business as usual' is budgets, but I don't think anyone yet has a grasp of how the new Commissioning bodies are dealing with the challenges that face them. Given the current cost of fuel crisis in the UK, from which as yet the NHS is unprotected, and the somewhat confused situation prior to a new Prime Minister taking up their post, it is not unreasonable to consider that wholesale service cuts are a possibility.

I suspect things are going to be pretty messy, and while there maybe a strong inertial influence to keep things as they are, the opportunity to simply discontinue contracts as they come up for renewal may be very attractive to Commissioners who are struggling to meet Government demands to shorten waiting lists and support hospital managers faced with slashing costs just to keep the lights on in A&E.

 

Anyone know what this refers to?

 

I think this probably refers to some work Peter White (F-ME) was doing looking at other (non-ME) charities and how they raise funds and invest. If you search recent minutes you might find exactly what it refers to.

I suspect trying to get MEA to do anything radically different is a lost cause!

 

this

https://forward-me.co.uk/july-13th-2022/

 

Indeed - and as the King's response suggested even 'covering themselves' by saying there are 'not for ME/CFS' - well what are they being funded by then and how is that pot of money working. Because I suspect historically they were set up under that 'guise' but expanded to cover 'fatigue' ... why are there not separate discussions on whether that is funded and how/what is best to serve that need then.

I assumed there would be gameplaying along the lines of certain people claiming 'whatabout those with 'our CFS' who are 'losing out' by not being able to access CBT+GET' even though there was no evidence they'd even tested such a category of people.

So I also expected those trying to get the guideline to work have a response and a plan regarding dealing with this.

A key thing/issue is where funding has got rolled in with long covid (what is going on with their guideline) and then 'other fatiguing conditions' - and our charities are not only having to try and sort out ME/CFS but that gravy train with little evidence that has snowballed (and I guess we need to know how and why there - is it really 'patient need' or 'GPs need somewhere to put these people' or 'supply-led bums on seats tactics from those running said centres').

If we don't resolve and make clear all of this it is going to be an ongoing nightmare - it's like MS being made responsible for by being attached to 'healthy eating' clinics under some pseudoname, and debates actually going on about healthy eating instead of the plight of people with that condition in meetings that will only ever be so long and trusts will just give up and side with the status quo. So yes these things need to be closed down and made to justify their worth on their own and completely separated from ME/CFS.

 

Not sure as we are well advanced in a new model and approach in Suffolk but that is not for Norfolk....

 

I think mods we might benefit from a private group to discuss freely like that set up for the NICE work?

I could then give feedback in confidence to what is being uncovered now in our local work and negotiations and before we hit the October DHSC Workshops?
All our work towards a new Pathway is 'work in progress' and not for public domain.

I and our group in Suffolk, are beginning to get to grips with an awful lot to do with the DHSC initiative etc and what it likely to happen and how.

https://www.england.nhs.uk/east-of-...ion-partnerships-and-integrated-care-systems/

All based on preceding stuff going on (under currents-restructuring of Health services 2016-2022 / Commissioning and ME' (or not) in the grand scheme of things.
It's complex convoluted and ever changing.)


If my understanding is correct, unless NHS England enshrine ME within their regional/national Specialised Services Programme, ICS Framework we are stuffed.....DHSC have no capacity having granted it to NHS. E

https://www.england.nhs.uk/commissi...lised_clinical_commissioning_document_library
https://www.england.nhs.uk/wp-content/uploads/2017/10/prescribed-specialised-services-manual.pdf

ICS's have not embraced ME... and won't till monies are made available.
NHS England » NHS England commissioning functions for delegation to Integrated Care Systems

 

Nor had I but now getting there.

 

Preparing for the DHSC next week and looking at bigger picture.

file:///Users/barb/Downloads/nhs-constitution-handbook-acc.pdf

I have trawled through the NHS Constitution and cut and pasted interesting relevant sections;
Especially in relation to NHS England's statutory obligations.

I have inserted two references;
1. to Healthwatch
2. to our local Joint Strategic Needs Assessment for ME Services (first in the country, Director of Commissioning and Public Health Norfolk stated)

 

Minutes for November's Members' Meeting. https://forward-me.co.uk/16th-november-2022/

 

Moved post

For clarity, Forward-ME is not a charity organisation, nor can it be described as a "main UK ME/CFS charity". The main ME/CFS registered charity orgs (by membership and income) are AfME and the MEA.

Forward-ME was set up by the Countess of Mar as an informal group, membership of which was controlled by the Countess of Mar. She set up this group partly because she did not approve of members of the public attending APPG on ME meetings. Members of the public are not able to attend Forward-ME meetings, either.

The Countess of Mar stepped down as Chair of Forward-ME in Spring 2021 but according to the website, she continues to actively serve on the group's Steering Group.

The current Chair is Andrew B Morris; the current Deputy-Chair is Carol Monaghan MP.

https://forward-me.co.uk/governance-meetings/

"FORWARD-ME GOVERNANCE

Context​

The ME community in the UK is served by a considerable range of charities, with even the largest being relatively small. Recognising the benefit of being able to speak with a louder voice, Forward-ME was established as a coordinating body to provide a unified and perhaps louder voice for the ME community to reach key influencers and stakeholders – government, medical bodies etc..."​

There have been no meeting minutes posted on the website since 16 November 2022. I cannot confirm whether any meetings have taken place since then or whether any minutes (or meeting summaries) have been circulated but not posted on the Forward-ME website.

I might contact Chair, Andrew Morris and ask whether the group is still operating and if so, why no minutes are being published. However, since I am persona non grata with the Countess of Mar, it might be more productive if someone else were to volunteer to contact him and ask what the status of the group is and why no minutes or summaries are being published. I can provide an email address.

 

What is the current status of Forward-ME?

There have been no meeting minutes posted on the Forward-ME website since 16 November 2022.

I cannot confirm whether any in person or virtual meetings have taken place since then, and if so, whether any minutes (or summaries of meetings) have been circulated but not posted on the Forward-ME website meetings page:

https://forward-me.co.uk/governance-meetings/


The Countess of Mar stepped down as Chair of Forward-ME in Spring 2021 but according to the website, she continues to actively serve on the group's Steering Group.

The current Chair is Andrew B Morris; the current Deputy-Chair is Carol Monaghan MP.

I could contact the Chair and ask whether the group is still operating and if so, why no minutes or summaries of meetings are being published.

However, since I am persona non grata with the Countess of Mar, it might be more productive if someone else were to volunteer to contact the Chair and ask for clarification re the group's status and why no minutes or summaries are being published.

If anyone would like to pursue this, I can provide an email address for Andrew Morris or there is a Contact form on the website: https://forward-me.co.uk/contact-us/

 

ForwardME and the APPGME are looking more and more like just a drain on us. They do nothing for us - but their existence makes it look as though official groups with parliamentarians are actively advocating for us, when they are simply 'Looking busy, doing nothing' - though not even looking busy these days