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

Jonathan Edwards said:
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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Yes. Jo.
You were perfectly right and clear. ..
That's been our stance as coproducers.

That's what we have stuck out for and insisted, clinic/ Consultant led MDT.

We have been in complaints process with CEO ICB Board since this became a red line issue in July.
Spec and Pathway was agreed in draft
Version 7?
Friday last...told it would be out as Prior Information Notice but gone down another black hole....:nailbiting:

Just had conversation with patient rep lead who will do a ,' look here sunshine' request as today still isn't on contract finder...

May be more on this later after today's request.

Our service in good old days, used to focus on Severely Affected house bound with 30% of referrals in receipt of consultation at home..... ddomiciliary is vital we say.
 
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Suffolkres said:
Yes. Jo.
You were perfectly right and clear. ..
That's been our stance as coproducers.

That's what we have stuck out for and insisted, clinic/ Consultant led MDT.

We have been in complaints process with CEO ICB Board since this became a red line issue in July.
Spec and Pathway was agreed in draft
Version 7?
Friday last...told it would be out as Prior Information Notice but gone down another black hole....:nailbiting:

Just had conversation with patient rep lead who will do a ,' look here sunshine' request as ttoday t still isn't on contract finder...

May be more on this later after today's request.

Our service in good old days, used to focus on Severely Affected house bound with 30% of referrals in receipt of consultation at home..... ddomiciliary is vital we say.
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Is the ICB in question relying on a different NHS org to put out the PIN?
 
We had home visits from our local ME service about 13 years ago. It was the same OT who ran the outpatient clinic groups recommending the same diary keeping and add a new activity each week. Completely useless.
 
18 years ago we had our Consultant Dr Mitchell doing home or acute hospital MDT interventions.
Patients were happy, GPs were reassured, hospitals happy......
What possibly could have gone wrong and stopped it.....?

Medico politics locally.
Been trying to run clock back for 18 years ...
 
Suffolkres said:
That's what we have stuck out for and insisted, clinic/ Consultant led MDT.
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Yes but we don't want an MDT, surely. In my view we want a physician and someone with nursing training who has acquired OT skills. If other people are (occasionally) needed they can be brought in as for any patient. As soon as you have the MDT mentality you have the BACME approach.
 
Jonathan Edwards said:
So what is Chales Shepherd claiming to have been achieved? Sorry, I haven't had a chance to look at the source material.


Edit: I listened to Charles. I am unclear what he thinks has been achieved as yet.
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Lots of chat and feedback. He has been very supportive over 2 years.
Did a cracking job with the crap Topic Paper/ Public Health 'needs' assessment. 2022, commissioned by our medical director.... as did late Derek Pheby. RIP Derek.
 
@admin.

Given that Norfolk and Waveny have split from Suffolk and NE Essex and the former aren't cooperating with a nice compliant recommissioning project, we should probably now have two separate threads - one for Suffolk res's work and one where I can post the underwhelming Norfolk and Waveny ICB responses to my complaint / questions for posterity....
 
Kiristar said:
@admin.

Given that Norfolk and Waveny have split from Suffolk and NE Essex and the former aren't cooperating with a nice compliant recommissioning project, we should probably now have two separate threads - one for Suffolk res's work and one where I can post the underwhelming Norfolk and Waveny ICB responses to my complaint / questions for posterity....
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I totally agree.
It's confusing for all, as Waveney is in Suffolk!
And NE Essex isn't in Suffolk....:facepalm:
Suffolk Commissioning have been fantastic, and who broke away from collaborative commissioning with Waveney in 2017.

but Waveney (PCT/CCG) have led us a merry dance for 2 decades......Shame on them!
Norfolk CCGs area was good from 2010- 2014.....
I believe it was NHS England who decided these misaligned boundary ICSs.
Every meeting was a 100 mile round trip for me. 2006 to 2019......
I can't do that any more.... too old now.
 
Kiristar said:
@admin.

Given that Norfolk and Waveny have split from Suffolk and NE Essex and the former aren't cooperating with a nice compliant recommissioning project, we should probably now have two separate threads - one for Suffolk res's work and one where I can post the underwhelming Norfolk and Waveny ICB responses to my complaint / questions for posterity....
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There isn't a person called admin who will respond to this.

If you want to start a new thread, you are free to do so.

If you want some specific posts moved from this thread to a new thread, please use the contact moderators button on those posts and explain in the pop up box what you want done.
 
Will post both here and on other thread for Norfolk Waveney ICS. .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 for Norfolk Waveney ICS. .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”.
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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
 
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