United Kingdom - Suffolk and Norfolk ME/CFS services

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.

 

Well you certainly seem ahead of the game ! It was the co-ordination across the UK I was thinking of, unfortunately there doesn't seem anything like the level activity on the ground that you have going in many other places.

 

Well. Re the 3 intra Norfolk ccgs. I have the misfortune to live right on the border of 2 of the 3 Norfolk services (my home in one and GP surgery the other) and it's a nightmare. On pretty much everything Practitioners from each look where I live, decide its too far for them to travel and chuck my case over the fence at the other lot and walk away. I often then never hear back and have to start all over again get new referral specifying a different group or location. I also have grave concerns about the competence of certain teams in certain hospitals though there are pockets of excellence or good practice.

There was apparently a meeting on an oversight of health services committee where 2 questions
1 whether the current ME service was compliant with new NICE and
2 whether GPS were aware was added as an extra agenda item.
I wrote an open letter describing my recent pretty hopeless experience (in a nutshell a firm no to both) which a contact then gave to several of the attending councillors I believe.
I just pray it made a difference and prevented any Norfolk complacency as the current 6 OT slots and you're out "service" was utterly ineffective, and now falling apart due to over demand and under resource as it stands and in dire need of upgrade.
I think it was videod but to ill to investigate further. None of the councillors were near my district /
Fingers crossed.

 

Moved post

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!

 

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

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?

 

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.

 

their rough guide is so badly done the person responsible should be sacked along with the muppets who signed it of .

 

Can I quote you on that and send it to them.....?
They won't listen to us!

 

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'

 

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.

 

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?

 

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.