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United Kingdom - Suffolk and Norfolk ME/CFS services

Discussion in 'UK clinics and doctors' started by Suffolkres, Oct 2, 2018.

  1. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    This thread has been formed by merging several threads

    This discussion has been split from this thread

    UK campaign for better ME services in Suffolk and Norfolk

    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!!
    Last edited by a moderator: Nov 3, 2021
    MEMarge likes this.
  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    re government spending:
    "BRITAIN'S £150million F-35b Lightning II fighter jets have touched down in Norfolk after crossing the Atlantic." (that's £150million each).
    MEMarge, MeSci, ladycatlover and 5 others like this.
  3. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    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.
    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.
    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.
    Last edited: Oct 2, 2018
    ladycatlover likes this.
  4. Sasha

    Sasha Senior Member (Voting Rights)

    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:
    Last edited by a moderator: Oct 2, 2018
    MeSci, ladycatlover and NelliePledge like this.
  5. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    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.
    Last edited by a moderator: Oct 2, 2018
    MEMarge, MeSci and ladycatlover like this.
  6. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    The point is about "skepticism" and delivery of promise.... ( MRC) CMRC etc... and to illustrate a point, be wary!
  7. Andy

    Andy Committee Member

    Hampshire, UK
    adambeyoncelowe and Wonko like this.
  8. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    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.
  9. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    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.



    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
    Last edited by a moderator: Nov 3, 2021
  10. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    That sounds very useful.
    Trish likes this.
  11. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    We looked at this in 2016 at the request of Commissioners in Suffolk and because the ME Service had not/could not/ would not have time to develop it themselves.
    It would be good to get some feedback and to send it onto Russ and the MEA?
  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    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
  13. Russell Fleming

    Russell Fleming Senior Member (Voting Rights)


    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.


    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... :)
    Gecko, Daisy, SallyC and 1 other person like this.
  14. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    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."


    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
  15. Suffolkres

    Suffolkres Senior Member (Voting Rights)


    Attached Files:

    Invisible Woman likes this.
  16. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    @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/.
    Andy, Sly Saint, Trish and 1 other person like this.
  17. Amw66

    Amw66 Senior Member (Voting Rights)

    Brilliant resource. Easy to read, graphics give " at a glance" info
    I think every practice should have a copy.
    Trish likes this.
  18. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    I've saved everything here for NICE, by the way! Not being a doctor, I can't say how appealing these docs are, but the checklist and images look useful for getting across the symptoms and properly weighting things.

    Is the checklist specifically designed for CCC?
  19. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Sorry Adam. What is CCC? Sorry, not too sharp this morning! Canadian Consensu.....!
    Last edited: Jan 11, 2019
  20. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    The Canadian Consensus Criteria.

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