UK: Norfolk and Waveney ICB; ECCH ME/CFS Service

Kiristar

Kiristar

Senior Member (Voting Rights)
Moved post

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.
 
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Kiristar said:
Moved post

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.
Click to expand...
Kiristar...
I feel your frustration and pain....
I am so glad you are still champing at the bit.
Others like Jo B seemed to have disappeared from the media.
We have had ANOTHER frustrating day, still correcting ambiguities, mistakes and errors in the final draft of 'our' Specification and Pathway...... and ot went on Contract finder today with these problems...

I won't post it until they agree to correct as it will send put the wrong message.
Dawn is on the case!
 
Suffolkres said:
Kiristar...
I feel your frustration and pain....
I am so glad you are still champing at the bit.
Others like Jo B seemed to have disappeared from the media.
We have had ANOTHER frustrating day, still correcting ambiguities, mistakes and errors in the final draft of 'our' Specification and Pathway...... and ot went on Contract finder today with these problems...

I won't post it until they agree to correct as it will send put the wrong message.
Dawn is on the case!
Click to expand...

Sadly I'm a lone voice here and it all feels very fruitless. What little hope there is rests in your amazing work over the border.
 
It would if they would listen and act.
Tonight it seems they can't even get the service name right officially....
What if there is no one out there with competence and expertise to steer the service....

That ultimately is my worry.

This happened in 2017 when Suffolk tried to issue a Prior Information Notice for a new Suffolk CCG Service.....

What of there is no one willing or able to deliver the service? A poisoned challis..?
What if........????
 
Will post both here and on other thread our Prior Information Notice link.....issued by Suffolk and NE Essex ICS.

That is because SNEEICS covers Waveney Suffolk, Suffolk County Council Social Care/Education and Ofsted CQC matters..

via Integrated Community Partnership who will need to give endorsement...

Please note the incorrect title, we drew attention to ( amongst other mistakes), which we have been assured, will be dealt with.....
From Lead officer Deputy CEO,

'The PIN is locked down and cannot be changed having checked this morning. A correction can be added to signal the current name is: Myalgic Encephalomyelitis & Chronic Fatigue Syndrome and Long Covid Service and then in that order throughout”.
 
Suffolkres said:
Will post both here and on other thread our Prior Information Notice link.....issued by Suffolk and NE Essex ICS.

That is because SNEEICS covers Waveney Suffolk, Suffolk County Council Social Care/Education and Ofsted CQC matters..

via Integrated Community Partnership who will need to give endorsement...

Please note the incorrect title, we drew attention to ( amongst other mistakes), which we have been assured, will be dealt with.....
From Lead officer Deputy CEO,

'The PIN is locked down and cannot be changed having checked this morning. A correction can be added to signal the current name is: Myalgic Encephalomyelitis & Chronic Fatigue Syndrome and Long Covid Service and then in that order throughout”.
Click to expand...

Myalgic Encephalomyelitis & Chronic Fatigue Syndrome and Long Covid Service SNEEICS

This has now gone live today and can be found through the link below. The spec is available for anyone interested on request as opposed to putting it on there now.

Suffolk and North East Essex Long Covid and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME&CFS) Combined Service - Find a Tender
 
Suffolkres said:
Myalgic Encephalomyelitis & Chronic Fatigue Syndrome and Long Covid Service SNEEICS

This has now gone live today and can be found through the link below. The spec is available for anyone interested on request as opposed to putting it on there now.

Suffolk and North East Essex Long Covid and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME&CFS) Combined Service - Find a Tender
Click to expand...
FOCUS Groups Opportunity

'Thank you,

In regard to patient representation, while we do not have a designated patient representative, each focus group will include a diverse mix of past, current, and waiting patients.

These groups are facilitated by a co-production lead with additional strategic support to ensure all voices are heard and that each group remains focused on our goals.

We feel this structure allows us to capture a broad range of perspectives without relying on a single representative.

For those unable to attend the focus groups, we have requested that questions and comments be submitted via email in advance.

This allows us to review any key points ahead of time and incorporate them into the discussions where appropriate.

Kind regards

Lucy Ainsley (she/her)

Programme Manager – Long Term Conditions Population Health Management Lead for SNEE
My working hours are 8am – 6pm Monday to Thursday.

Website: suffolkandnortheastessex.icb.nhs.uk
 
ICB Board Question

So I started investigating the Norfolk ICB board online and discovered the public have the right to ask questions at their board meeting. So I submitted the following question for the September 24 ICB Board meeting.

Receipt was acknowledged and I will post their written reply below. Question was worded to fit their maximum word limit rule.

If anyone has the energy and can join the meeting in person or on video to check the question actually gets read out and to support the need do let me know. (Warning- they are long so no expectation of anyone to do this, I'm unable to myself I assume it would be at the end).

Public Question:
"I have the following question, which I wish to raise for the next board meeting on 24 September. I would be grateful if receipt could be acknowledged. With thanks in advance.

I am a severe ME/CFS patient not receiving any NHS medical care for it because my GP lacks the specialist expertise and there is no clinical, ongoing, specialist service commissioned.

Question: There is a big gap in provisioning for more severe ME/CFS patients and what exists (4 group sessions) is not NICE compliant, causing delayed diagnosis, no clinical monitoring or treatment and poor patient outcomes. There’s no provision at all for severe (housebound) and very severe (bedbound) patients. Given the Maeve Boothby inquest (died due to lack of commissioning) and this has been acknowledged by Minister Andrew Gwynn, what is Norfolk ICB doing to resolve the issue?

Supplemental: Please can Norfolk keep step with Suffolk and Essex in implementing their newly developed, cost neutral, clinical ME/CFS service pathway design? Failing to do so is turning ME/CFS healthcare into a postcode lottery and creating health inequality in East Anglia, which you are supposed to be fighting as part of your mission.

I am housebound and too severely ill to attend the meeting so look forward to the written reply. "
 
Answer to my questions received on 25th Sept 24

Dear Ms Stuart Clarke

Further to your question for our board meeting today, I am emailing to provide an answer in writing, which will be placed alongside the meeting's papers on our website.



The ICB currently commissions a service from East Coast Community Health (ECCH). This a specialist service that provides expertise in assessing, diagnosing and advising on the clinical management of ME/CFS, including symptom control, and provides a range of therapeutic and rehabilitative interventions. It raises awareness and improves the diagnosis, treatment and quality of life of patients with ME/CFS, and their carers. The service offers face to face clinic appointments, and well as video and telephone appointments for those unable to attend in person. They are unfortunately unable to routinely offer home visits due to resource constraints, however they do undertake them where they have identified a clinical need, which is assessed on a case-by-case basis. The service is responding to NICE guideline [NG206] Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management.



The ICB is actively working with ECCH to redesign the service to respond to NICE guideline NG206 and to ensure an optimum pathway for our patients within the available resources. As part of this redesign, contact will be made with NHS Suffolk and North East Essex ICB to ensure we learn from their experience, and understand and take into account the services recently redesigned and being implemented there to improve outcomes and reduce inequalities for our population.
 
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