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

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

 

Coproduction Lead ICB
I hope you are well and thank you for your patience. The engagement opportunity is now ready to share with patients and family carers for their input on the combined pathway, to help shape the service spec. This will be shared urgently with all patients and family carers on the current pathways, for their opportunity to feed in and share amongst their networks. We will also use wider communications.

You can find this using the Lets Talk SNEE platform, a dedicated place for people and communities to take part in discussions and service transformation. Please use the following link to view, share and take part: Transformation of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME & CFS) and Long COVID-19 service pathway | Lets Talk SNEE
You may notice that this has replaced the page which was started following the 2021 NICE guidance, that yourself and the group contributed to previously. The team will use this engagement, and all insights, research and reports available to inform the new service spec.

In the time and scope for this transformation, at this late stage, I have advised this is the most appropriate method for this opportunity, and further work can be undertaken with people with lived experience to commission and evaluate the services moving forward, as agreed and planned by ICB colleagues.

Best wishes,
Su

 

https://www.letstalksnee.co.uk/me-c...rome-me-cfs-and-long-covid-19-service-pathway

 

I wonder what people think of this.
It acknowledges a need to provide a service for severe patients.
But otherwise it looks very much like a whitewashed multidisciplinary BACME programme with a notional doctor somewhere in the background.
The amount of empty bureaucratic language is extraordinary but I guess standard now.

 

We said simply,
The work that B and I do is based on feedback from hundreds of service users over the years, mainly from local support groups, social media and ECCH Change Audits.
Common themes have emerged such as;

• the importance of seeing a doctor who specialises in ME&CFS,
• GP education and awareness,
• care for the severely affected,
• medications for symptom control,
• screening for coexisting conditions,
• care and support plans,
• the use of tech such as Visible,
• support for benefit claims etc.
• Also the need for service to be connected with or engaged in research.....

We have sought to address these concerns in the specification.
The funding is there available, but subject to conflictioning interests, and a clearly different emphasis steer and aspirations....
As well as overall direction of travel... and level of expertise of service medical lead ....
We want dedicated ME competent doctor...
They didn't...

(existing LC SNELCAS)

 

Feedback so far suggests the natives and responders to date are very displeased with current provision. ....
Well that's no surprise!

 

The link doesn't work for me @Suffolkres .
It is still all very opaque to me what is actually being proposed.
I am here to give a view if it is wanted.

 

One thing that seems inappropriate to me is that it looks as if the tender is asking for bidders to be ready to provide a complete service immediately. Since we have no real idea what a service ought to look like I cannot see how anyone can honestly do that. The likelihood is that bidders will appear who claim to provide what is needed but will simply recruit the same people as before.

 

That has always been our fear too.
So HOW to ensure that doesn't come to pass is the critical question....
How to effectively hold provider to account within NHS bureaurocratic systems is the test.
KPI's are often limited, tests like Friends & Family merely tread water...
All ideas on how to effect a real change would be welcomed!

 

It doesn’t mitigate the lack of actual medical options but..one piece of the puzzle could be having an ongoing budget for lived experience involvement, having a group of properly involved lived experience reps (as opposed to helicoptering people in for one question, where they don’t have enough of the context or the relationships with the staff to actually have any meaningful influence), having them on recruitment panels, involved in creating key ways of working (relevant parts of standard operating procedures, specific policies), having them involved in periodic contract monitoring meetings and steering groups. This requires budget (reps should be paid) and somebody good to support the reps in their role and with any accessibility needs. They need to have the chance to build relationships with the service staff.

I know I’m probably preaching to the choir!

 

I think it’s sneaky including a requirement to be able to stand a service up pretty much immediately, but who is going to challenge the ICB on compliance with procurement regulations if there isn’t anybody else who could deliver the service anyway?

 

Gosh I hate watching this

it looks like the all to familiar war of attrition for the illest to have a say - they put their health aside and do it once and that should be that unless it’s really well-planned additional reasonable questions with a big time lag. And their word should count for more and have proper independent advocate support to push it through not be down to the community exhausting itself if they even have good support from that

otherwise it’s the same old tricks whether deliberate or not of ‘unless you can sit in another room for two hours and try and fight against people who’ve 100 x more sitting hours than you do that week for a word in edgeways, but they just have to wait an hour til you’re collapsed inside …’

I just hate the facade and game playing so much at this illness

I do think we’ve ended up with these things no one else wants being dumped on us because we are vulnerable and all the horrible dynamics you watch that are cliches that happen (like some more healthy person waltzing in an speaking for them taking advantage because of resetting rules to ‘whoever can turn up to ten things gets the day’ not ‘whoever genuinely listens and represents’ etc)

 

It’s a real problem isn't it, I wish services and staff would just do the right thing and do it well without having to be guided and hand held.

Nobody should be asked to put their health aside to do lived experience work, in fact none of us should have to put our health aside to be advocates for ourselves, and people with more severe illness shouldn’t be forced to rely on people with less severe illness to advocate for them either.

This is not unique to this illness, unfortunately.

Lived experience reps often ask to be involved in the ways I listed above, design it that way (obviously that is not necessarily something to celebrate - it means they know it’s needed).

How would it look to you in an ideal world?

 

@Suffolkres is the link broken?

 

I’m sure I saw something in the spec about arranging independent advocates for individual patients, is that the sort of independent advocacy you were referring to?

 

For a start there is obviously something missing on the procurement side from what you describe having some dept that properly holds to account and liaises with the most in-need users (instead of the low hanging fruit to tick the box - there don’t seem to be enough regs on ‘who counts’ and then having to make adjustments to taking process down to being done in a way that is accessible to them and doesn’t take advantage)

as you’ve said it’s a vulnerability thing that on this occasion isn’t me specific but that ‘think they know what it is’ issue of the illness is a major problem. And splitting it across each trust having to be done individually and all the back and forth in bids means even a charity like 25% would have no chance and I can’t imagine how much funding you’d need to stay on ties and oversight a

 

We created the above over 2 decades. We were unequivocal and independant. Had good support from Overview and Scrutiny/ MPs/ APPG etc
But our preferred pathway and outcomes were not shared by all those within. Suffolk Commissioning have been fantastic.
If 'they', other Partners don't like the message, they shoot tbe message and organise a new less challenging one!