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

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....

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.

 

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 ...

 

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.

 

I would entirely agreed. We can take an ICB horse to water, but you can't make them drink!
We want a clinical medical Service, not a therapy service.

 

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.

 

Don't think so. Government one, due to size of the tender. (Over £1 million....)

 

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.

 

Jo, you may be approached by ICB to sit on a procurement panel as you are a 'local' medical!
Promise it won't be a League of Gentleman style!

 

Spoiler: comedy video

https://www.youtube.com/watch?v=-P69Pia_t94

 

Always happy to oblige.

 

@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....

 

I totally agree.
It's confusing for all, as Waveney is in Suffolk!
And NE Essex isn't in Suffolk....
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.

 

I really hope your trailblaizer project works out. N&W claim to be watching.

 

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”.

 

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

 

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