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

Suffolkres

Suffolkres

Senior Member (Voting Rights)
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Edit November 2024, this thread has been renamed to reflect changes in areas served.

UK campaign for better ME services in Suffolk and Norfolk

dave30th said:
I have trained myself not to get excited even with purported good news--for the very reason many patients are so skeptical.
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Exactly DT, in 2009, we convincingly proved our case locally for a new service (or reinstatement of the lost consultant one).

We even had suitable candidates waiting in the wings.....
In 2013- 2014, the new service specification was agreed by all and by proper co production.

Then the Tories and the Landsley reforms kicked in,.... and the CCG shit hit the proverbial fan.
(I am of DT persuasion when it comes to direct language.)

Roll onto 2018, .........when we finally salvaged a little from the endless fire of meetings, formal complaints, media interest etc....... well something for Suffolk at least.

Norfolk is a tad trickier but we will be having a go!

MPs have been useless, local elected members have been very good and supportive. Some of them have also talked in very direct language- (which I have recorded!)
I am drafting a letter as we speak, to the chair of the Norfolk & Waveney Joint Strategic Commissioning Committee (sounds very grand- JSCC) -the JSCC who have failed to answer pertinent questions put to then in August.

I, not we, have received a "Strictly Private and Confidential" missive from the chair (the most highly paid CCG head in Norfolk). http://www.edp24.co.uk/news/health/norfolk-nhs-ccg-chief-paid-200-000-for-nine-months-work-1-5252287 NHS chief paid up to £200,000 for nine months work as staff costs soar at Norfolk’s Clinical Commissioning Groups
PUBLISHED: 15:59 26 October 2017 |
Not sure if this was in addition to above £200,000
"North Norfolk’s chair, meanwhile, Dr Anoop Dhesi, was the best paid chair of all Norfolk CCGs earning £120,000 from the CCG last year. He was given a £30,000 pay rise on the previous year."


I am not the one who should have been written to thought............. as the Report was not drafted by me nor the questions put to committee by me......

So a DT Special is being prepared as an Open Letter- sent to press as well who recently published the "post code lottery" article.

I will, draft in as many direct phrases and sayings as I think I can get away with, 'cos frankly, the time for pleasantries and polite talk is past!!
 
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Normal for Norfolk..Forget the fighters, Norfolk had NHS Billions.....
About the CCGs in Norfolk and Waveney

Local need – local choice
With a population exceeding 1.1 million, Norfolk and Waveney’s CCG arrangements are in step with other areas of the country.
In 2011, GP practices were asked by the Department of Health to form CCGs that best suited local need. Local GP Practices were very well placed to say what was needed and in Norfolk the five CCGs emerged; there was public engagement on the geographies and a rigorous assessment process. Each CCG has very different populations, so having a local CCG means commissioning can be more closely tailored to local need.
Health services are run in localities
There are three very distinct health ‘systems’ within Norfolk, each with its own acute hospital. West Norfolk has a distinct system around QEHKL, Great Yarmouth and Waveney has long been recognised as having a unique and distinct system around the James Paget University Hospital and in central Norfolk, the NNUH sits at the geographical centre.
CCGs work to patients’ local areas
The three CCGs in central Norfolk have differing needs – Norwich has all the issues of an urban centre not seen in rural north and south; North Norfolk has a much larger retired population; South Norfolk not only has specific demographic needs but it also has long-established relationships and ways of working which suit its local area. Each CCG engages closely with its local population and meets locally with public participation.
Finances
Each CCG has a programme budget in excess of a quarter of a billion pounds yet they are very small, lean organisations, led by local doctors and nurses. They are supported by small teams who are paid according to national rates. CCG running costs are less than 2% of total budget.
Collaboration
The CCGs collaborate and share commissioning at scale where it makes economic and clinical sense. For example, where services are shared, one CCG will often co-ordinate commissioning – such as South Norfolk CCG co-ordinating commissioning of the new Wellbeing Service across Norfolk and Waveney. CCGs share many services to save money and to work in a more joined up way – for example many back office functions, commissioning, contracting and finance functions are provided by a local commissioning support unit based in Norfolk.
In central Norfolk, the three CCGs have established a Joint Commissioning Committee and a Joint Contracting Executive to further strengthen collaboration and there is also one System Resilience Group to manage the all-year-round pressures on the NHS, which is led and coordinated by North Norfolk CCG.

Only yesterday (Tues Jan 12th 2016) Chief Officers from health, social care and partner organisations from across Norfolk met to discuss closer working.
 
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Sasha said:
I'm very impressed with how hard you've all worked to try to make progress towards a biomed-led service in your local NHS. :thumbup:
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It would be good to show our "Open Letter' and show how £ billion service provision is being run by headless chickens and turkeys -albeit highly paid ones..... What would Bernard Matthews say?
Just post about CQC failing to deal with Duty of Candour (medical negligence) - has important for both NICE and GMC issues.
 
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The point is about "skepticism" and delivery of promise.... ( MRC) CMRC etc... and to illustrate a point, be wary!
 
About to finalise an Open Letter about the patient safety and patient risk from "insufficiency of services for ME" within Waveney (Suffolk) and Norfolk (5 CCGs).

Waveney (Suffolk) and Norfolk (5 CCGs) have a new Joint Strategic Commissioning Committee who meet bi monthly- next meeting is the 16th in North Norfolk.

Suffolk CCGs (2 CCGs) had made an effort at least and are to be praised for that.

Letter will be posted as soon as it is signed off.
 
Another installment in the lengthy process attempting to improve service provision in Norfolk and Suffolk.

The Joint HOSC has requested a great deal of information from both the CCG's and the provider of the service ECCH.

The report written by the Joint HOSC in preparation for the meeting and appendix A which details the information provided by the NHS are both worth a read as they give an insight into local service provision.
http://nandsme.blogspot.com/2018/10/meeting-of-joint-health-overview-and.html?m=1
 
Merged thread

Moderator note: new thread created from posts originally here


Resources for GPs by Norfolk & Suffolk ME and CFS Services

We also developed some "training" material and info for GPs.
Hven't properly rolled this out as yet but did get a clinical overview from Jo Edwards a while back.
Will post for comments later.

http://nandsme.blogspot.com/p/blog-page_23.html

Resources

GP Awareness
During meetings with Suffolk Commissioning it was agreed that the Patient / Carer Group would prepare information for GP's to raise awareness regarding ME & CFS in our region. Clinical advice was kindly provided by Professor Jonathan Edwards. The mind maps can be downloaded as PDF's, just click on the links:

ME and CFS: Referral booklet for GP's and patients

ME and CFS: Key Information

ME and CFS: What Patients Say Helps

Guide to the Care Act 2014 and implications for Providers
PDF can be downloaded from here
 
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Suffolkres said:
ME and CFS: Referral booklet for GP's and patients
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this is exactly the sort of thing that should be part of the new NICE guidelines.

I have asked the question many times as to how exactly pwME are split into Mild Moderate and Severe (NICE amalgamated Severe and Very Severe which I think was a mistake). The NICE guidelines do suggest 3 descriptions which are quite woolly.

It would appear from most of their literature that AfME, only count 'some people' as severe and then the rest as mild, and the MEA definitions are only marginally better.

But I don't think that in practice, GPs who diagnose ME/CFS differentiate re: severity.
They certainly don't seem to have any tools to help them assess severity.

The CCC severity checklist is the best I have seen that could be easily implemented.

@adambeyoncelowe @Keela Too
 
NelliePledge said:
No they might be nominally under a Dr but the person who saw me in 2016 was a physio. There was also an occupational therapist who saw people on initial assessment as well. In some areas there isn’t a CFS clinic at all. Very few have a specialist of any kind most likely to be overseen by a psychologist. The one I went to is closed to new referrals people go to a generic pain clinic. A decent well informed GP would do a better job.
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Greetings,

I canne work the multi-quote thingimebob, but in answer perhaps to those who were talking about the inadequacies of a GP making a good diagnosis.

The NICE guideline is a framework for the NHS and in the ME/CFS guideline it says that 'primary care' i.e. frontline GPs should be capable of making a diagnosis based on the criteria and exclusionary testing etc.

Some ME/CFS specialist clinics do have 'primary care' physicians as part of the service, be they 'GPs with special interest' or consultants (immunologists and neurologists have been examples as well as psychiatrists), all of whom should be capable of second opinions and/or making a diagnosis.

But I suspect for most specialist services/clinics their primary function is to facilitate 'management advice' and to monitor. The number of sessions varies across England (where the NICE guideline was orginally directed and the provision for a network of clinics was made).

When the guideline was published, NICE also published a 'costing template' that provided the recommended number of sessions with cost implications for the NHS. The guideline itself also carries recommended number of sessions for e.g. CBT, GET, Activity Management, Sleep Management, Relaxation etc. etc.

It would be useful to learn which of the remaining NHS clinics offer the recommended number of sessions before discharge, because again I think this number various considerably.

Follow-up after discharge is yet another area that could form part of a discussion with NICE. Responsibility should pass back to primary care and the GP. But as we know, a lot of people with M.E. have little or nothing to do with their GPs for various reasons, and hence nobody is in charge of their care.

My reason for mentioning costing and sessions, was to consider how the network of clinics has declined in recent years primarily I think because of NHS cost-cutting.

My own local clinic in Cornwall was threatened with closure on the grounds of cost and it was only due to a large outpouring of patient concern - and support for the service - that the hospital bean-counters changed their minds.

Cost implications are also perhaps a factor when it comes to staffing a clinic. And we also perhaps need to consider the attractiveness of ME/CFS when it comes to recruiting doctors/consultants to take a lead role.

Sorry. Bit garbled.

Russell

Thank you to everyone who has taken part in Dr Muirhead's survey and to all the feedback being sent to my email address which I will forward to her when the survey closes on 31st January.

Edited: For clarity. Probably failed. Need me bed... :)
 
Russell Fleming said:
When the guideline was published, NICE also published a 'costing template' that provided the recommended number of sessions with cost implications for the NHS. The guideline itself also carries recommended number of sessions for e.g. CBT, GET, Activity Management, Sleep Management, Relaxation etc. etc.
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Here is this historic NICE costing which I prepared and put on my Google drive site. It was for our "negotiation" (argument) with Norfolk and Waveney CCGS......
To Commissioner at Waveney;

"Attached, as agreed is a short 3 pages of context which lists the links to the key documents I suggested you may find helpful.
I have also attached the ‘Inequalities’ paper sent to JSCC and the questions for which we await some feedback.
We, the Service Development Working Group, look forward to meeting with you in the New Year.
NHS Suffolk can hand over all the contact details, Terms of Reference etc to allow this to be taken forward.
With regards to patient surveys, details of the past and current Healthwatch arrangement is provided.
I have the data regarding both Norfolk and Suffolk’s returns from the published report.
These were shared with Maureen Orr of Jt HOSC."

regards,.......


NICE Costs and Savings and sensitivity analysis from 2007 Guidelines (2 pages) https://drive.google.com/file/d/1M2wp_C6ZTe3SXnxI_sHoK6uNx4X_gDyu/view?ts=5c1ac8ce
 
Sly Saint said:
this is exactly the sort of thing that should be part of the new NICE guidelines.



@adambeyoncelowe @Keela Too
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@Suffolkres i agree with Sly this is a brilliant product for GPs and definitely needs to be put on the table at the NICE GDG to show doing the right thing is entirely possible with the right approach and materials.

I hope it is ok to give some constructive feedback. My last job was making web content on some pretty technical topics as user friendly as possible. Reading Appendix 1, which is for patients to fill in, i feel the language could benefit from being more plain English to be accessible. We are used to the terminology around ME but I think people new to ME may struggle with some of the wording. Also when writing for a general audience it helps to bear in mind that to make their content accessible a lot of organisations work to a reading age of around 9. https://contentdesign.london/reading/specifying-a-reading-age-for-web-content/.
 
Sorry Adam. What is CCC? Sorry, not too sharp this morning! Canadian Consensu.....!
 
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