UK: Norfolk & Suffolk NHS ME/CFS center goes biomedical!!!

[Bob]

The clinic I attended ran their clinic strictly to the nice guidelines, but the therapists were extremely sympathetic when I said that their graded exercise therapy wasn't appropriate or suitable for me. They said it didn't suit everyone and I should feel free to try the course and drop out at any time. The therapists were very decent people. But the specialist doctor attached to the clinic, who assessed the patients, was an idiot and thought I should experience malaise only after exercise.

 

[ukxmrv]

Can I make a suggestion for next time the staff at a NHS CFS clinic tell you that they would like to offer more?

Ask them what they would like to offer if they could have a free hand.

( as an aside that's what I did and the answer surprised me as they were the doctors "pet" interests and nothing in the way of treatment that one would see on this forum unless it was on a fringe interest thread)

 

[Maggie21]

Thanks for taking the time to respond in so much detail, @elliepeabody! I'll print that off and have a read of it.

What you're describing is going to be beyond a lot of us (many of us would be unable to attend meetings, for example). But there seem to be some interesting pressure points there.

I agree Sasha. The information @elliepeabody is providing looks very detailed and useful and provides us all with at least a glimmer of hope. As a patient I would love to get involved in something like this as it could do so much good, or certainly be a lot more useful and effective than the current set up. But unfortunately as a patient I don't think I would maintain the cognitive abilities or energy necessary to be of any use. Still if anyone in my area (Gloucestershire) was considering trying something like this I would be more than happy to contribute the little bit I could.

 

[BurnA]

What does this mean for treatment though? My guess is nothing, for the moment anyway.

It might mean that when a biomedical treatment is available there will be a proper consultant in place ready to administer it rather than waiting another few years to find doctors knowledgable enough.

Its a big step in the right direction.

 

[elliepeabody]

A quick update. The minutes for the meeting our Patient / Carer group had with Commissioners and the Provider had in June have recently been uploaded.
http://nandsme.blogspot.co.uk/2015/05/meeting-with-nhs-commissioners-4-june.html

The September and December minutes will be posted as soon as they are agreed.

Work to develop the service continues to be undertaken on a number of fronts and the Patient / Carer group is working hard to hold the NHS to its promises to improve care for people with ME and CFS in Norfolk and Suffolk, despite a very challenging financial environment.

 

[sarah darwins]

A quick update. The minutes for the meeting our Patient / Carer group had with Commissioners and the Provider had in June have recently been uploaded.
http://nandsme.blogspot.co.uk/2015/05/meeting-with-nhs-commissioners-4-june.html

The September and December minutes will be posted as soon as they are agreed.

Work to develop the service continues to be undertaken on a number of fronts and the Patient / Carer group is working hard to hold the NHS to its promises to improve care for people with ME and CFS in Norfolk and Suffolk, despite a very challenging financial environment.

That's just awesome. Got a bit teary reading that, weirdly. People who actually want to help, not implement some pet theory. Bless them all.

The actual minutes are here: https://drive.google.com/file/d/0B2eUb8PoOndFX2RnNE01dGZiRVE/view

How cool is that, too, that they're being so transparent? Norfolk and Suffolk? Bloomin' cutting edge, that's what.

 

[elliepeabody]

Thanks for your kind words sarah.

Credit to NHS Suffolk Commissioning and the Provider East Coast Community Health for allowing the minutes to be uploaded to our website. NHS Suffolk Commissioning have been very supportive of this programme of work with our group and the Provider.

In case you missed it the report into the latest patient survey by the ME & CFS Service which is mentioned in the June 2015 minutes has also been uploaded.
http://nandsme.blogspot.co.uk/2015/09/patient-survey-carried-out-by-nhs-april.html
Direct link (the link from the website allows me to track hits on the website)
https://drive.google.com/file/d/0B_yBB-PNDPXeOVA4aGF4bWswQXc/view?pli=1

 

[elliepeabody]

Another update. A lot of work has been done in the past year.

A consultant has expressed an interest in leading and developing the service. I am not able to say who this is, but the Patient / Carer Group is delighted that this person is interested. A feasibility study was undertaken in the summer to determine whether or not cost-neutral service change could be delivered. The Patient / Carer Group attended meetings in September and earlier this month as part of this process.

The final report was released at the end of November, but we are not yet able to release it publicly. This is the entry on the Service Development website which summarises where we are as of the 15 December meeting (http://nandsme.blogspot.co.uk/)

The meeting was held between Suffolk & Gt Yarmouth & Waveney Commissioning and representatives from the Patient / Carer Group.

A final report has now been released following the feasibility study funded by 6 of the 7 CCG's who commission the service. The feasibility study concluded that cost neutral service change could be delivered to address the significant and longstanding inequalities of care, especially relating to the severely affected.

If implemented the service change would form the foundation for developing a biomedical service which is more in line with that delivered to people with other neurological conditions such as MS, and also with links to ME research projects.

The feasibility study is now being reviewed by the 7 CCG's and the Provider and a decision will be made in early January 2017.

The Patient / Carer Group fully endorse the recommendations of the final report.

This is an unprecedented opportunity to deliver a biomedical service in Norfolk and Suffolk which can be built on and expanded. However, I'd remind you that we are dealing with 8 NHS (7 CCG's and 1 Provider) organisations all of whom need to agree to the way forward. I think of it as the 'herding cats' model of commissioning although the Suffolk CCG's are working incredibly hard to deliver.

If anyone here has experience dealing with recalcitrant CCG's I'd be grateful if you could contact me backchannel asap.

 

[Esther12]

Thanks to everyone working their way thgouth these sorts of important bureaucratic processes.

 

[elliepeabody]

If you are interested a more detailed summary of what has happened regarding service development to date has been posted on our website. http://nandsme.blogspot.co.uk/p/the-story-so-far.html
Feel free to comment!

 

[elliepeabody]

Well, an update for you all. Limited as always in what I can say but no doubt you can read between the lines. Commissioning in Suffolk has issued a 'Prior Information Notice' seeking expressions of interest from Providers to deliver a biomedical consultant led service. https://www.contractsfinder.service.gov.uk/Notice/db55b813-34fd-4b64-ac44-03a26596180e?p=@08=UFQxUlRRPT0=NjJNT

The aim of the service will be to improve outcomes (particularly for those with severe ME), increase ongoing support and provide a more holistic multi-disciplinary team approach to care. The total annual budget for the community element is anticipated to be in the region of 500,000 GBP.