United Kingdom: ME Association news

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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....)

 

Aah…I wonder if that’s where the delay is

 

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.

 

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

 

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

 

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.

 

Copied from the thread on the PROM funded by MEA https://www.s4me.info/threads/uk-me...alist-services-2023.33221/page-64#post-565801

Not surprised.

MEA have an AGM coming in December. As a member we can vote on suggestions tabled and raise issues.

The way I see it is if they don't want to respond to us then we need to do something about that by attending the AGM and airing our grievances.

 

I agree, for strategic matters, unfortunately in this instance I feel too strongly about the lack of response to continue paying and wait for an AGM. They have been made aware of the issue, S4ME aren't a member and didn't raise it at an AGM but patients are still patients.

 

Understand and respect your decision Haveyoutriedyoga.


But I encourage each of us who are members to raise it at the AGM. Let MEA know "your silence is deafening". Until concerns are taken seriously & addressed not much will improve. This isn't the only issue with MEA but a symptom.

Plus we get a chance to have a say in the way MEA is being run & managed as members at the AGM. Something to consider, there's still a couple of weeks.