ME/CFS services in the United Kingdom

New shiny IC Board is now an entity and they were confronted by question from us, on them giving endorsement and commitment to a new ME Service Development.

https://www.youtube.com/watch?v=sHrUzYg0UuY

48 minutes in........
* Anthony Dooley (who I know from NUT!)
and second, me - 4 questions......

 

I can't listen to this video right now, can some body please summarise it for me?

 

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A change to Health Service delivery under a new act 2022 Health & Care Act for Suffolk in Alliance with NE Essex.
We Patients & carers have been negotiating Health Service delivery for ME for years, decades!

We will continue to do so under a new regime.........
Watch this space

Questions and a statement to the new board as of today from patient/care reps.


'This Integrated Care Service (IC) (Integrated Care Board) change has come about so fast..How are the public expected to know about it and understand it is a mystery..?

NB- Community Engagement Partnership -(under former CCG) - Ipswich & East Suffolk CCG representative,Tina Rodwell will be attending in person to put the following question on vital ME Service development.


'After 16 years of solid co production work for ME Services, (with Excellent support from PCT/CCGs commissioners - now ICS Commissioning...)-
an imperative for the new ICB, must be to formally agree to take co produced ME Service health inequality and inadequacy onto agenda, verify & endorse it at board level fast.

Question 1
Will you give that commitment?


Question 2 Supplementary
Will you the new ICB appraise and give priority status to ME service development following minister Savid Javid recent April 25th 2022 keynote statement on needs for ME Services and research?


All we (patients, carers, Community Engagement Partnership -CEP Voluntary organisations) know is, after 16 years of solid co production work for ME Services in our area, an imperative for ICB.
(It is what we asked of CE Ed Garrett at recent ICB /ICS launch at University of Suffolk Ipswich.)'

 

So the overall trend I am seeing is that they are mostly adopting the concepts from the chronic illness community, and distorting them. Having spent decades pretending, or maybe believing, that it's the words and labels used that are problematic, rather than the intent and ideas behind, changing them without affecting the meaning, the latest fashion seems to simply appropriate everything we've built, and change its meaning to the opposite, creating maximum confusion, especially when people search for information. Now many people will search for pacing and find advice called pacing that is literally the opposite.

They seem to think that using the same terms, but meaning the exact opposite, so pacing is essentially GET, we won't tell the difference. I think this is all going to get so much stupider before this insanity ends. Decades of commitment to this ideology, millions of lives sacrificed to it, can't just be acknowledged and moved on. No matter how much harm it causes, they just call it something else.

At this point, the BPS ideology can honestly be thought of as a church, an organized religion. It exists for its own purpose, and doesn't care about outcomes, about what happens outside their temples.

 

my take on the situation is very little has changed.
a bit of tinkering and removal of the literature available, and the occasional use of ME/CFS in some instances, but more often than not ME/cfs still equated with 'chronic fatigue', described as 'extreme tiredness', Trudie Chalders book on 'chronic fatigue' still recommended reading by most services (which shows how little has changed).

the LC patients seem to either get told to pace (which seems to vary in interpretation) or try and get back to normal activities as soon as possible.
If they don't get better and are then diagnosed with ME/CFS, they then go back to essentially the same 'service' with almost exactly the same treatment.

 

The problem with this cult is that its members seem to be on a special operation for which they are equipped with the Royal College licensed "Knight Vision Optics" which enable them to detect the one true path when all around are cloaked in darkness and unable to see the light.

 

BBC Website Article

Freedom of Information requests submitted to health trusts in the North East and Cumbria by the BBC found some discharged patients within a few months.

Of the 122 referred to the North Cumbria trust in September 2021, 46 had stopped using the service by December, despite the condition usually being considered chronic, or long term.

Half of those in Newcastle (131 out of 260) and 40% of those in County Durham and Darlington (97 out of 242) had also been discharged in that time.

North Cumbria Integrated Care NHS Trust said it delivered care "in line with NICE guidelines" and patients who were discharged were given an "ongoing care plan and can refer back into the service if they feel their symptoms have worsened".

Newcastle Hospitals NHS trust said it sometimes referred patients for psychological therapy and wanted to help them manage their own condition on a long-term basis with their GP.

Those discharged could "self-refer back to the service if their circumstances change", it said.

County Durham and Darlington NHS Trust said patients usually had 12 therapy sessions, after which some felt "they have been sufficiently helped and some may feel that the sessions are not for them".

They were reviewed after six and 12 months "to ensure they remain empowered to manage their condition" or check if more sessions would be beneficial, it said.

https://www.bbc.co.uk/news/uk-england-cumbria-62013551

 

shouldn't this have it's own thread?

eta:
hah, "You can see further information about integrated care board leaders and links to the local integrated care system websites in the ICS leadership section of this website."
404 page not found.

 

https://www.england.nhs.uk/publication/integrated-care-systems-guidance/

These documents set out the headlines for how we will ask NHS leaders and organisations to operate with their partners in Integrated Care Systems (ICSs) from April 2022 and guidance in respect of what the employment commitment is, its application in practice and how it affects people.

Document

Guidance to Clinical Commissioning Groups on the preparation of Integrated Care Board constitutions
Guidance to Clinical Commissioning Groups on the preparation of Integrated Care Board constitutions

PDF
401 KB
45 pages
Summary

This guidance for CCGs on preparing ICB constitutions is issued by NHSEI following approval of the Health and Care Act 2022. It sets out the relevant requirements of that Act and NHSE policy, in line with preparatory guidance published first in summer 2021 and refined during the passage of the legislation, developed with partners and ICSs.

Published 13 May 2022.

Document

Guidance to Clinical Commissioning Groups on the preparation of Integrated Care Board constitutions - Annex
Guidance to Clinical Commissioning Groups on the preparation of Integrated Care Board constitutions - Annex

PDF
475 KB
70 pages
Summary

This annex, to the guidance for CCGs on preparing ICB constitutions, presents the model constitution for ICBs. It is has been produced to help ensure that ICB constitutions comply with legal and policy requirements, including appropriate local flexibility.

Published 13 May 2022.

Document

Thriving places: Guidance on the development of place-based partnerships as part of statutory integrated care systems
Thriving places: Guidance on the development of place-based partnerships as part of statutory integrated care systems

PDF
360 KB
34 pages
Summary

Published September 2021.

This co-produced NHS England and NHS Improvement and Local Government Association (LGA) document seeks to support all partner organisations in integrated care systems (ICSs) to collectively define their place-based partnership working, and to consider how they will evolve to support the transition to the new statutory ICS arrangements, anticipated from April 2022.

Document

ICS implementation guidance on working with people and communities
ICS implementation guidance on working with people and communities

PDF
415 KB
26 pages
Summary

Published September 2021.

The ICS Design Framework sets the expectation that partners in an integrated care system (ICS) should agree how to listen consistently to, and collectively act on, the experience and aspirations of local people and communities. This guidance sets out 10 principles for how integrated care boards (ICBs) can develop their approaches to working with people and communities, and the expectations.

Document

ICS implementation guidance on effective clinical and care professional leadership
ICS implementation guidance on effective clinical and care professional leadership

PDF
219 KB
24 pages
Summary

Published September 2021.

This guidance supports the development of distributed clinical and care professional leadership across integrated care systems (ICSs). It describes ‘what good looks like’ in this regard, based on an extensive engagement exercise involving over 2,000 clinical and care professional leaders from across the country, led by a multi-professional steering group.

Document

ICS implementation guidance on partnerships with the voluntary, community and social enterprise sector
ICS implementation guidance on partnerships with the voluntary, community and social enterprise sector

PDF
623 KB
23 pages
Summary

Published September 2021.

This guidance provides more detail on how to embed voluntary, community and social enterprise (VCSE) sector partnerships in ICSs, for health and care leaders from all organisations in ICSs that are developing partnerships across local government, health, housing, social care and the VCSE sector. The ICS Design Framework sets the expectation that integrated care board (ICB) governance and decision-making arrangements support close working with the VCSE sector as a strategic partner in shaping, improving and delivering services, and developing and delivering plans to tackle the wider determinants of health.

Document

HR framework for developing integrated care boards
HR framework for developing integrated care boards

PDF
465 KB
57 pages
Summary

Published August 2021 and updated March 2022.

The HR framework provides national policy ambition and practical support for NHS organisations affected by the proposed legislative changes as they develop and transition towards the new statutory integrated care boards.

Document

Building strong integrated care systems everywhere: guidance on the ICS people function
Building strong integrated care systems everywhere: guidance on the ICS people function

PDF
319 KB
34 pages
Summary

Published August 2021.

This guidance builds on the priorities set out in the People Plan. It is intended to help NHS system leaders and their partners support their ‘one workforce’ by delivering key outcome-based people functions from April 2022.

Document

Working together at scale: Guidance on Provider Collaboratives
Working together at scale: Guidance on Provider Collaboratives

PDF
464 KB
33 pages
Summary

Published 10 August 2021.

The ICS Design Framework set an expectation that provider collaboratives will be a key component in enabling ICSs to deliver their core purpose. This guidance outlines minimum expectations for how providers should work together in provider collaboratives, offering principles to support local decision-making and suggesting the function and form that systems and providers may wish to consider.

Document

Integrated Care Systems: Design framework
Integrated Care Systems: Design framework

PDF
404 KB
56 pages
Summary

Published 16 June 2021.

Document

Guidance on the employment commitment: Supporting the development and transition towards statutory Integrated Care Systems
Guidance on the employment commitment: Supporting the development and transition towards statutory Integrated Care Systems

PDF
352 KB
20 pages
Summary

Published 16 June 2021.

 

I can confirm fatigue clinic is only for stable ME/CFS patients who can self-manage and do not require medication. I've been told by two separate services. The second asked, "Who told you?"

The criteria sounds like it's for patients in remission in my opinion. Yet they were willing to accept my GPs referral without anyone checking my severity.

I've informed my GP as the service said my GP can contact them about policy information. My GP sounded shocked. Apparently, no one has told them about anywhere else to refer severe patients.

 

https://psnc.org.uk/lpcs-and-local/locally-commissioned-services/integrated-care-systems/

"In 2016, the NHS and local government came together in 44 areas across England to develop proposals to improve health and care. They formed new partnerships – Sustainability and Transformation Partnerships (STPs) – to run services in a more coordinated way, to agree system-wide priorities, and to plan collectively how to improve peoples’ day-to-day health.

STPs have subsequently evolved into 42 Integrated Care Systems (ICS), a new form of even closer collaboration between the NHS and local government.

* deliver Long Term Plan commitments on care delivery and redesign...".

watch this space for design & delivery of ME services.....

 

This is a big issue I think in a broader sense. I'd like to see a thread on it in wherever the relevant place would be - noting this one is for services that individually can be addressed - discussing whether what we currently have is a set up where lots of the services saying they are for ME are actually fatigue (and who they actually get through the door, and what policies they have for referral or indeed diagnosis - and how that all relates to funding. How many have been and are still 'generic'? How many actually have some sort of clinical staff or could even pick up what might be 'OK/good' in the future

I'm struggling to write it well but think we all know the services have tended to address the mild end vs the severe end, have set-ups and offerings that probably aren't useful to those more ill etc and this has likely influenced how those professionals who claim experience from working in them understand the condition.

 

Thanks for confirming re: thread.

Yes, that is certainly the impression coming through. Busy-work. I'd somehow missed the "was to allow the clinics to transition" confirmation I think but makes sense. I can't help read most of the many job descriptions, note the CBT or other specialism (CBT is NOT supposed to be embedded as per guidelines, or ethics, but only for those choosing it for 'coming to terms': so why are physios asked for it?) and think 'money for old rope'.

And agree it is starting to become clear that closure is the easiest way forward (including staff issues) for some. What have they been up to springs to mind.

These are millstones. Huge distractions from sorting what PwME need. Why on earth are some of the most under-resourced charities for the most neglected condition having to try and do the clean-up and beg job directly with them - whilst the very severe ME die in hospitals, and debilitated people no access to adjustments and essential-to-living functional support. Which seems at least as doable from scratch with funding just moved and ringfenced for the correct functions.

If most of these clinics are generic fatigue services. And most of their attendees (and certainly those who use it and aren't harmed) don't have ME/CFS. Why are they being funded and from what pot? I'm aware some seem to be private/ contracts

I do remember at the time the claims from BPS of 'whatabout those with CFS' - frankly obviously more concerned with that than those with ME. It sounded like unproven sophism.

For some reason noone asked them to 'prove it' ie come up with either a figure for that or how poorly they are. Does BPS CFS without PEM even exist in many and what actually is it and how many and how much debility is there without those with ME in it? What is it if you exclude other mixed up diagnoses (like depression)? Or is it things like post-cancer they are treating?

It feels like a serious audit of 2-3 of these places need to be done, confidentially, to find out how they are filling their places for funding, who these people are what diagnosis they are given/vs do have, when, and on what basis (from which tests or HCP type). How many of those with ME in a CCG are actually finding/would find benefit and with what?

AND Why really did anyone end up there? We know that plenty of 'nudges' or threats of it affecting key things were involved for ME patients, drop-outs are glossed over etc - is there actually anyone who has ended up at one of these places without other pressures from within the NHS who has any condition that actually considers what they offer directly useful or helpful ie in making their condition itself better? Not just meaning work/family is happier because 'they are helping themselves'.


And, as a side note:

The current form I'm seeing a picture of feels like potentially millstones in their own right even if it weren't in our name and were nothing to do with ME they seem like liabilities and 'of their time' 'initiatives' likely to backfire in some way. At best questionable value, at worst people recovering from cancer or missed diagnoses in clinics with far from a curious mindset. Do even they want to lift their own hood/car bonnet and tailor to account for that?

They seem to have a one-dimension, one-mode treatment with no diagnostic clinician for which they take any old hotch-potch of people and are kidding themselves that they are technical or measuring impact, safety or important other diagnoses. That might become more clear when they imagine removing ME from it. I'm thinking a local gym doing the same sort of thing might send for medical checks/clearance to cover their backs for all sorts of situations, what happens in these clinics etc?

 

I think the information ties back to what I discussed here.

https://www.s4me.info/threads/uk-sp...ine-services-for-me-cfs-and-long-covid.24903/

It doesn't seem to be popular opinion that ME is a CNS condition, but that is how the condition was described to me at the fatigue clinic - Luckily it is somewhat recorded. Plus any imagery of a brain and spine which is often used alongside ME criteria indicates (non) Traumatic injury/Acquired injury.

Unstable CNS conditions need level 2 neuro services. Level 1 is for major trauma. Fatigue clinic is a level 3 community service for those with fatigue and a bit of pain. It's a grand fobb-off for people who are severely ill.

My GP said they''ll find out where severe patients should be referred to. I'll chase up soon.

 

I think so. Patient criteria amongst other things should not be hidden.