United Kingdom - Suffolk and North East Essex ME/CFS services

CRG said:
This really is a time for co-ordinated action, at the very least many hundreds of letters need to be written, and ideally those letters need to reflect 'local stakeholding' (yes I know "yuk", but we need think in terms of bureaucratic audience we have to address). Even in NI, Scotland and Wales where commissioning is notionally at least, done at devolved Government level, local providers/potential providers need to be contacted to alert them to local concern/service demand. In England as a you say 'localism' rules with apprx 250 CCGs to be engaged with.

The NHS financial year runs April to March, with service contracts mirroring this. New contracts can be signed at any point but March is a target date for having service alterations in place and for having budget allocations for new contracts agreed ahead of the new Financial Year. The opportunity to get the provisions of the 2021 Guideline reflected in existing contracts really shouldn't be missed - allowing a roll over to future years will see a loss of momentum and further ossification of bad practice.

I'm not sure that any of the ME/CFS patient orgs are nimble enough or if they are, have the resources, to both agree on a strategy between them and to then push that out across four Governmental Administrations and 500 or so local commissioners/providers. It's going to be a major test of what the UK ME/CFS community is capable of.

Edit to add "further"
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I think we in Suffolk are pretty nimble with contractual arrangements being discussed as we speak. Watch this space!
 
Jonathan Edwards said:
Do you know where this is from @Suffolkres ?

I agree that there are problems with information like this.

Maybe now is the time to try to bring some sense into information for ME.
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The website was very recently changed to this ahead of the anticipated NICE release.
I think they will not appreciate too close a scrutiny of their claims and statements......
We need them to be subject to formlised complaints about the inconsistency and poor comments and suggested unmet needs as measured against NG206.
 
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Moved post

Trish said:
I notice the list of training for the retiring OT included a brand of psychotherapy, and coaching and NLP. Which sounds awfully like quackery verging on LP.
I noticed someone employed by my local clinic is listed as doing mindfulness and NLP. The quacks are creeping in through the cracks.
Click to expand...

Not so we hope in our area......


Received today from ; Deputy Director of Performance and Contracts

"Good afternoon,

I’m pleased to welcome and introduce you to my colleague A. A will be helping us to redesign the ME&CFS service/ model across Suffolk and North East Essex. A works for our transformation team, and we are delighted to have her on board!

I’ve met with Al few times to share a brief history/ context around the ME&CFS service and our local plan to implement a clinically led, integrated MDT model.
I’ve briefed A on the paper we co-produced around two years ago which described the constraints of the current service and principles of a Multi-Disciplinary Team delivery model.
We have also recently met with some of our GP leads to outline the ambition and for their clinical support and advice. The GPs were supportive of the principles of the model we have suggested.

As now reviewing the NICE guidance to understand the potential impact on a ‘new/revised service,’ and thank you B for sharing information around this which I will share with A.



Is there value in arranging a form of meeting in January to reaffirm that we are still aiming towards the same goal/ outcome and check if anything has changed since we last met which was a long time ago! ?

How would you feel about a virtual meeting? I’d value your feedback.

Alternatively, if you feel nothing materially has changed in terms of the aim, then perhaps we don’t need to meet, or a quick phone call may suffice.

I’ll be guided by you. And are I say it…..Seasons Greetings - I know it’s a bit early!!

Kind regards, N"

Having watched the MEACTION interview with Caroline Kindon and Adam Lowe, I am hoping there will be a transcript available to provide the key messages to out local Commissioning Team and to GPs in the Clinical Executive.
The session was brilliant and will be so useful! Thanks Adam and Caroline and MEACTION!
 
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Merged thread

East Coast Community Healthcare ME/CFS service website


"
We are a specialist NHS service that seeks to meet the needs of people who have a diagnosis of Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) in Norfolk and Suffolk."

mixed bag of information quite different to other NHS sites.

Rough Guide to ME/CFS
Symptoms and what they mean.
There are many symptoms of ME/CFS. The following is a list of symptoms and what they mean.

Sudden onset fatigue, exhaustion and unrefreshing sleep.
This means that you start to feel exhausted and, no matter how much sleep you get, you still feel exhausted. People vary and just doing a little activity can make some feel ill/exhausted immediately. For others, the exhaustion may appear the next day or the day after. Even with lots of sleep you feel exhausted.

What causes exhaustion?
Energy for everything you do and feel comes in the form of something called ATP. Every cell in your body needs this.


Your oxygenated blood goes to each cell and the energy factories in the cell (Mitochondria) get to work to produce and store energy.


In ME/CFS the energy factories seem to struggle to recycle the energy or store it. So anything left over goes into the waste system and passes out of your body.


When you do activities with your mind and with your body, you will get to the stage where you simply don’t have enough ATP. Your ATP suddenly falls – ‘CRASH’.


It takes at least three days for you to build up the levels of ATP again for you to have a better day.
Click to expand...

active minds and anxiety

The Stress Response
When the brain detects a threat (a stress) it will react with a stress response. This response helps you deal with the immediate danger - your muscles tense, your heart pounds, blood whooshes around the body, your brain is stimulated and your immune system is suppressed. Afterwards you will feel anxious and shaky.

If you have lots of physical stress – like low levels of energy – and/or psychological stress your EMERGENCY STRESS RESPONSE will flick on most of the time and will be harder to shut off.

Through the day it will be triggered repeatedly – it loads your brain with more and more signals and chemicals to make your mind be active. At the end of the day there is so much of this stimulation in your brain that it really can’t shut up – it’s still whirring away whilst your body is exhausted.

The stress response can trigger a crash as it is ‘on’ too often for too long and eventually total physical exhaustion is overwhelming and you can hardly do anything!
Click to expand...
https://me.ecch.org/rough-guide-to-me-cfs/

https://me.ecch.org/

still no mention of PEM though(?)

@Suffolkres I think this is your area?
 
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Sly Saint said:
"
We are a specialist NHS service that seeks to meet the needs of people who have a diagnosis of Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) in Norfolk and Suffolk."

mixed bag of information quite different to other NHS sites.

Rough Guide to ME/CFS



https://me.ecch.org/rough-guide-to-me-cfs/

https://me.ecch.org/

still no mention of PEM though(?)

@Suffolkres I think this is your area?
Click to expand...

Yes - that's all that is now on offer ( after losing the consultant Suffolk service in 2018) and Suffolk buy into it from ECCH (Norfolk and Waveney Alliamce.)!

BUT there are plans afoot to be taken up in January 2022 to seek 'alternative multi disciplinary service' based in Suffolk NE Essex Alliance area......

There is likely to be an overlap in contacts for a while so we are still serviced by ECCH.

ECCH won't engage with us........ OT's are OK ish but senior management is crap and not to be trusted.
 
Two posts with details of local implementation of the NICE guideline have been moved from UK: UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group)

.....progress to date with the Delivery Plan on ME/CFS and a question sent to interested parties including APPG members.....
FYI

'Dear Wendy & Claire,


......I would like to provide you with a welcome update from us at SNEE ICB regarding progressing delivery of NICE NG206 for ME and CFS
within the SNEE area…..

As the first part of the journey, 'A' is taking a draft Joint Forward Plan proposal through the local due sub committee processes which she has co produced with us and other strategic partners including the ME Association.
It is hope she will be able to share this with you once the draft has been approved.


Additionally, the main patients and carers have been drafting a statement which shows appreciation and reflects on what she, as current Transformation Manager and NHS Suffolk Commissioning and former CCGs have done over some considerable time also in partnership with other strategic partners like Joint Health Overview and Scrutiny and to some extent, Healthwatch. I will attach what we wrote separately.


'A' wrote the following this morning;

'Thanks B
I hope the DHSC publish their report in the new year as promised. Other ICB’s are doing their strategy plan to submit to NHSE in March.
So would be interesting if other areas have mentioned ME&CFS in their joint forward plan.
I agree the resource from NHSE would be welcomed.
Thanks
'A'


So, we in Suffolk have a simple straightforward question for you to pose to the new ICSs (via NHS E?? rep on the DHSC working group- Profess A Williams ?) to help us get the 5 yr JFP over the line….and ahead of your finalisation of the DHSC Report!
* I have emailed and petitioned NHSE Eastern who have failed to provide timely information.


Question;

How many of the 42 new ICS have ME and CFS enshrined in their draft 5 Year Forward plans which will be due to go to NHSE in March 2023?


(Many will have draft 5 year plans 2019-2024 - which they are ‘revisiting’ redrafting under the new 2022 April Heath & care Act and creation of the ICSs.)
Because in our view, if it isn’t in the ICS5 Year Forward Plan plans for 2023, it could undermine all the good work you are doing….

regards,


B & D
Suffolk'
 
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Suffolkres said:
.....progress to date with the Delivery Plan on ME/CFS and a question sent to interested parties including APPG members.....
FYI

'Dear Wendy & Claire,

......I would like to provide you will a welcome update from us at SNEE ICB regarding progressing delivery of NICE NG206 for ME and CFS
within the SNEE area…..

As the first part of the journey, 'A' is taking a draft Joint Forward Plan proposal through the local due sub committee processes which she has co produced with us and other strategic partners including the ME Association.
It is hope she will be able to share this with you once the draft has been approved.


Additionally, the main patients and carers have been drafting a statement which shows appreciation and reflects on what she, as current Transformation Manager and NHS Suffolk Commissioning and former CCGs have done over some considerable time also in partnership with other strategic partners like Joint Health Overview and Scrutiny and to some extent, Healthwatch. I will attach what we wrote separately.


'A' wrote the following this morning;

'Thanks B
I hope the DHSC publish their report in the new year as promised. Other ICB’s are doing their strategy plan to submit to NHSE in March.
So would be interesting if other areas have mentioned ME&CFS in their joint forward plan.
I agree the resource from NHSE would be welcomed.
Thanks
'A'


So, we in Suffolk have a simple straightforward question for you to pose to the new ICSs (via NHS E?? rep on the DHSC working group- Profess A Williams ?) to help us get the 5 yr JFP over the line….and ahead of your finalisation of the DHSC Report!
* I have emailed and petitioned NHSE Eastern who have failed to provide timely information.


Question;

How many of the 42 new ICS have ME and CFS enshrined in their draft 5 Year Forward plans which will be due to go to NHSE in March 2023?


(Many will have draft 5 year plans 2019-2024 - which they are ‘revisiting’ redrafting under the new 2022 April Heath & care Act and creation of the ICSs.)
Because in our view, if it isn’t in the ICS5 Year Forward Plan plans for 2023, it could undermine all the good work you are doing….

regards,


B & D
Suffolk'
Click to expand...

Coproduction Statement
SNEE ICS - Coproduction driving Service development Change effectively
–
‘25 years of lived experience’ of a Suffolk carer and Severely Affected ME patient
Our local coproduction footprint story of ’following the due national Governmental NHSE /NICE established process’ towards Implementation of Specialist Services for ME and CFS via SNEE ICS Joint Forward 5 year Plan.

Following Suffolk & Norfolk ME and CFS coproduction work (embarked upon in 2005), the launch of the “Sustainability and Transformation Plan & Footprint” in 2016 allowed the Suffolk & Norfolk Patient/ Carer Service Development Working Group to anticipate an even more local based mechanism to drive ME and CFS services forward to Implementation.

To this end, we drove 100s of miles to argue our case from the outset at Board meetings and service development meetings. We engaged with Healthwatch and submitted extensively to the National Survey on ME & CFS by Healthwatch which was published in 2017.

This central tenant of our inequalities/unmet needs argument was submitted to the NICE 2017 review and has recently also been submitted to the Department of Health & Social Care Initiative by us, as an evidence base to oversee the implementation of the October 2021 rewritten ME and CFS NICE Guidelines NG206.

Joint Norfolk & Suffolk Health Overview & Scrutiny (JHOSC officer Maureen Orr and her team who we thank) have supported us since 2008. In 2017 & 2018 our patient/carer led petition was validated and we were supported by seminal JHOSC reports and debates which may lead to a future referral to the Independent Reconfiguration Panel for service change.

Only Suffolk Commissioning and CCG Boards have had the vision and wherewithall to truly work with us to support this Coproduced approach (which in 2018 resulted in a new Consultant led ME and CFS Service run by DR Luis Nacul in Suffolk for the severely affected unmet need.)

NHS Suffolk support has been crucial to this success.

Norfolk, CCGS lead by Waveney CCGS sadly deigned ME and CFS not to be a priority need therefore refused to work with us or Suffolk in a co-productive way.

In the submissions to the NICE Review Process in 2017 and 2020, we stated;


‘It is the widely held view amongst Group leaders, that whatever the new Guide Guideline might say on the label, it’s what’s in the tin that counts and may prove to be a mixed bag; the reality being that it is guidance, it is not mandated and comes with no real clear outcome measures.

Therefore we feel, whilst the change in steer and effective U turn by NICE is welcome, there appears little hope in the current crisis and circumstances of any new consistent national delivery for the foreseeable future. ‘

In answer to the 2020 NICE Review Questions & Scoping Process, ‘Which areas will have the biggest impact on practice and be challenging to implement?’ we further identified the following;

‘Lack of will & lack of political expediency, including lack of Governmental Non Government Bodies and Department of Health commitment, is a barrier and are major challenges as are the securing of new resources.’

Local processes are being explored which one would hope will lead to a substantive change of culture, but this improvement will be hard fought and measure if brought in likely to take in years to become embedded.

Nationally recognised accredited training and education of Health, Social Care & education staff as well as GPs and primary care specialist urgently need addressing.

Unless key partner Non Government Bodies, NHS England, NHS Improvements, NHS Public Health sign up and commit to support and fund change, CCGS, who hold 75% of the funding for service delivery, will procrastinate and delay for years, just has been the case since the 2004 roll out of national services under the Long Term Conditions programme.

Few CCGS/GP Federations or Transformation & Strategic Alliances (unlike Suffolk, who have led by example) have enshrined ME and CFS services in their 5 /(10) year NHS Forward Plans and have them discussed in the public domain.”


Summary

In our Eastern NHS England regional area of Suffolk & Norfolk Essex, we have fully followed the due Governmental, NICE and 2012 NHSE established process.

Before that we engaged with the Eastern Strategic Health Authority.

Over 25 years, we have a clear audit trail (which we attach & will make available), of all the coproduction work done by NHS Suffolk & us towards the necessary Implementation of a specialist Service for ME and CFS patients and their families.

We would like to thank all the Norfolk, Suffolk & Essex Support Groups & charities, members, patients & families of the ME local Community who have fully supported our Co production journey.
 

Attachments

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Posts moved from this thread

I am posting on another S4ME thread in relation to the 'bigger picture" and mus, but at some time soon will need to "go public" about our current 'spat' and outrage with local County Council Public Health etc over 'mus in relation to ME and CFS and 'related" conditions' etc ....

Hope that will be ok?
 
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Suffolkres said:
I am posting on another S4ME thread in relation to the 'bigger picture" and mus, but at some time soon will need to "go public" about our current 'spat' and outrage with local County Council Public Health etc over 'mus in relation to ME and CFS and 'related" conditions' etc ....

Hope that will be ok?
Click to expand...
Best done on this thread.

If it has wider relevance, best to post it on the local thread to keep it all in one place, and link to it from other threads if relevant.
 
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That seems sensible, though we are no longer Suffolk and Norfolk NHS, but separated 'ICSs Integrated Care Services'
It'd a total nightmare trying to track accountability!

.... part of Suffolk, Waveney has been "caste off" from the fold and gone to the dark side or underbelly.........

We are now 'separated';

NHS Suffolk (Waveney) plus NHS Norfolk ( ICS Integrated Care Service)

NHS Suffolk (without Waveney Suffolk) and North East Essex ICS

However, Suffolk County Council Public Health Heath & Wellbeing Board is all of Suffolk( without Essex or Norfolk!)
Essex similar

Confusing isn't it??

Plus current 'ME and CFS provider" is Norfolk & Suffolk Community Interest Company East Coast Community Health ECCH.

Essex has it's own provider.......Essex wide........

Unravel all that if you can!
 
* ONLY 2 days left to comment. All contributions welcome from S4ME?
It may also be useful for others working with their own commissioning ICS Teams and ICSs. Plus of course DHSC delivery plan!

https://sneeme.blogspot.com/2023/02/me-and-cfs-included-in-draft-joint.html

Saturday, 4 February 2023
M.E. and CFS included as a priority in NHS Draft Joint Forward Plan

Draft Joint Forward Plan
Our local NHS Integrated Care Board (ICB) for Suffolk and North East Essex has published their Draft Joint Forward Plan. This plan describes how the ICB plans to arrange and provide services to meet the health needs of people in Suffolk and North East Essex (SNEE) over the next 5 years.

M.E. and CFS has been included as a priority under the "Stay Well" domain on page 4 of the Executive Summary of the Draft Joint Forward Plan.

* The Let's Talk SNEE webpage has more information including the full version of the Draft Joint Forward Plan , and ME and CFS are included in more detail under Section 6.7.8 on page 157.
As part of the Co-production Team we had input into the wording of the M.E. and CFS section of the Plan.

We are very pleased that M.E. and CFS have been included as a priority in the Plan.
There are very longstanding inequalities of care in our area, especially for the severely affected which we would like to see addressed.

* On the Let's Talk SNEE webpage there is an opportunity to feedback your thoughts on the Draft Joint Forward Plan.

If you prefer audio there is a short YouTube clip about 2 minutes long explaining the role of the ICB and the purpose or the Joint Forward Plan. It is pretty dry stuff, but the Plan is very important in establishing the shape of healthcare in our area over the next 5 years. The level of funding which will be available to meet all the priorities is another matter though!

However, do comment if you can, or if you prefer you can message us, anonymously if you prefer, using the "Contact" page and we will pass on your thoughts to the ICB.
 
URGENT
Need to contact a small number of severely affected patients in N.E Essex, preferably anyone one in an area of identified ' disadvangae/ deprivation"!
NE Essex - don't provide any servive foer SAs.... never have!

By 13th June 2024 deadline (elections and other deadlines) Virtual meeting event/ patients or carer represenative, to secure from them what they want (and deserve).

Deprived areas -t hat gains more attention and 'brownie points' for commissioning and Transformation purposes.
Fighting hard to secure a severe for severly affected within our ICS
Message me and I will also check 25% Group and MEA. Happy to be phoned
 
For 2 years post NICE 2021 release, things were going swimmingly well in Sunny Suffolk and NE Essex SNEEICS shiny newly embedded ICB.
As of July 2021, questions were posed,
*questions were answered,
*ICB Board pinned down- before, during and after ICB ratification
- and medical directors duly challenged on confusion over ME/CFS being aligned with FND, dissociative disorder, MUS, (as were Public Health, 'Knowledge and Intelligence'......Thanks to Charles Shepherd zoom presence , intervention at a critical meeting - face to face for us!

Great, great, great Transformation manager Nurse Specialist, leading service development under formal ICB governance......
Terms of Reference, Task & Finish, Coproduction....
believing , responding.. GETting it. Excuse the pun!

ME finally embedded as a Priority LTC Health Inequality and unmet need in ICB 5 year Forward Plan..( details available)....

Sorted, except for 3 Local less enthusiastic Alliances .....who have their own priorities...... not necessarily aligned with ICB.......

Savid/o'Neill 2022 DoH Delivery Plan debate and invitations for us to take part.

SNEEICB invited, former consultant lead specialist services medical lead for SA ME, Luis Nacul invited..... looking promising......

Our Task and Finish model service, spec and pathway; Jo Edwards invited to contribute..Nigel Speight as well.... Social Care covered well by great Tymes Trust supporter.....thanks Tony!

Healthwatch engaged.

All boxes ticked....

So, What could possibly go wrong in SNEEICB?

Part 2 later!......
 
Suffolkres said:
For 2 years post NICE 2021 release, things were going swimmingly well in Sunny Suffolk and NE Essex SNEEICS shiny newly embedded ICB.
As of July 2021, questions were posed,
*questions were answered,
*ICB Board pinned down- before, during and after ICB ratification
- and medical directors duly challenged on confusion over ME/CFS being aligned with FND, dissociative disorder, MUS, (as were Public Health, 'Knowledge and Intelligence'......Thanks to Charles Shepherd zoom presence , intervention at a critical meeting - face to face for us!

Great, great, great Transformation manager Nurse Specialist, leading service development under formal ICB governance......
Terms and Finish, Task & Finish, Coproduction
believing , responding.. GETting it. Excuse the pun!

ME finally embedded as a Priority LTC Health Inequality and unmet need in ICB 5 year Forward Plan..( details available)....

Sorted, except for 3 Local less enthusiastic Alliances .....who have their own priorities...... not necessarily aligned with ICB.......

Savid/o'Neill 2022 DoH Delivery Plan debate and invitations for us to take part.

SNEEICB invited, former consultant lead specialist services medical lead for SA ME, Luis Nacul invited..... looking promising......

Oir Task andFinish model service, spec and pathway; Jo Edwards invited to contribute..Nigel Speight as well.... Social Care covered well by great Tymes Trust supporter.....thanka Tony!

Healthwatch engaged.

All boxes ticked....

So, What could possibly go wrong in SNEEICB?

Part 2 later!......
Click to expand...
Let me guess. Budget cuts, cuts to coproduction budgets, redundancies, everyone off sick or musical chairs for the rest of the staff so no continuity, priorities changed, urgent care programmes take priority, funding sucked into the bottom line to offset deficits, you haven’t spent your money at the moments notice we gave you so we’re taking it back, new person in charge doesn’t like the direction, there’s a split/merger/new collaborative that changes everything?
 
Haveyoutriedyoga said:
Let me guess. Budget cuts, cuts to coproduction budgets, redundancies, everyone off sick or musical chairs for the rest of the staff so no continuity, priorities changed, urgent care programmes take priority, funding sucked into the bottom line to offset deficits, you haven’t spent your money at the moments notice we gave you so we’re taking it back, new person in charge doesn’t like the direction, there’s a split/merger/new collaborative that changes everything?
Click to expand...
All of above!
 
Copied from the MEA news thread, and subsequent posts moved

I read the transcript. The fact that MEA is setting up a "Health and Social Care department" suggests that at least they know where to focus their efforts at the moment. And this sounds interesting:
And the one Integrated Care Board that I've been working with in particular on this, is Suffolk and Northeast Essex, where we've reached a point where we have - it's not in public domain - produced, what I think is a good clinical care plan which takes account of all aspects of the NICE guideline
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Anyone know anything more about it? The one criticism that I'd make - other than the fact that he places too much weight on poor-quality biomedical research - is:
but also from the point of view of the specialist services, which are, of course all outpatient services, and the fact that they should provide some sort of domiciliary home visiting service for people with severe ME
Click to expand...
Personally, I would be horrified if the existing "specialist services" set up domiciliary provision. There doesn't seem to be an understanding that what we need is an entirely new service model.
 
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Nightsong said:
Anyone know anything more about it?
Click to expand...

I have also been consulted on the Suffolk and North Essex plan. Suffolkres knows a lot about this.

Last time I spoke to a person drawing up a commissioning plan there was no guarantee of physician involvement and it looked very much like just buying in BACME services as far as I could gather. I voiced my concerns at that point.

The key problem here I see is the acceptance of the idea of a 'multidisciplinary team'. That is in this context a term used to diffuse and offload clinical responsibility to people with no idea what to do. You may well get something that looks like what is in the NICE guideline but even Charles has made it clear that that is not good enough - it needs to be physician led and to not involve people who therap for the sake of therapping.
 
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