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ME/CFS services in the UK

Discussion in 'General ME/CFS News' started by Sly Saint, Sep 5, 2018.

  1. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Jonathan, we need need advice regarding services in Suffolk ( Rheumatology perhaps?)

    We have encountered a blip in Suffolk. Having some creative thoughts about service provision and a specialist service head.
    In order to maintain a two tier service- for adults primarily; 1. mild/ moderate, diagnosis and management- 2. on going review and moderate to severe patient needs.

    Putting together some evidence based and other documents in prep for conversation with commissioners and contract staff. Suffolk have the money via 'unmet need'- Independent funding request (IFR) so I bet they might jump at the chance for a resolution albeit another "suck it and see". With several experts in background as expert adviser and NICE CCG members and Jo Edward in the wings?.......

    I am looking at rheumatology departments locally, as long as they are not BSP inclined ...who see fibro cases regularly. Thoughts and comments welcome!
     
  2. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Don’t want to be negative about your idea @Suffolkres as I know you’re battling to come up with something workable that keeps people away from GET. But my immediate thoughts about basing it on rheumatology are:

    Fibro is also under the MUS umbrella so it may not in practice make any difference to the approach in CFS clinics.
    I believe that people with Fibro are encouraged to be as active as they can, so physios OTs etc would have to be able to take on board the impact of PEM on people with ME.
     
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  3. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Thank you for those comments and observations. Keep them coming! I don't see it as negative at all. We need all the advice we can GET, no, get!
    The problem we are grappling is not the approach in the ME Clinic (diagnosis and therapy service) , but the lack of the tier 2 service which covers review and some ongoing oversight of the severely affected locally.
     
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  4. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    A while back, NelliePLedge said, "Don’t want to be negative about your idea @Suffolkres as I know you’re battling to come up with something workable that keeps people away from GET........."

    Well by stealth of hand, Waveney CCG and Norfolk CCGS (5 in all), have shelved 10 years of co prodiction service work and are going for CBT within the service...AND propose not to revisit this until 2022!
    So there will be a mini demo in Norwich tomorrow at the Joint Strategic Commissioning Committee Meeting( JSCC) , with roller banner (and the May 11th Stuff on show to warn in advance).

    Press and the BBC alerted too.

    Is there no end to this nonsense?

    Questions at the ready, sent in advance, for what it's worth.


    "Dear JSCC Chair,

    I shall be attending the meeting to ask questions form the public tomorrow on behalf of,

    Norfolk and Suffolk ME and CFS Patient / Carer Group,
    ME Support Norfolk
    Suffolk Youth & Parent Support Group
    Elevate
    (together these groups represent over 600 ME & CFS group members/ Patients and Carers in Norfolk and Suffolk)

    We will be raising concerns re N&S service:specifically, the proposal to introduce CBT & continued failure to care for severely affected patients.





    Reference;

    April the Jt Health Overview & Scrutiny Committee & the Jt Strategic Commissioning Committee meeting papers.

    Questions,:

    Why does Agenda (Item 4 Unconfirmed Minutes of the Joint Strategic Commissioning Committee meetingTuesday 19th February 2019 / 18.Questions from the public on matters relating to the agenda) incorrectly state,

    "MC responded that GY&WCCG will respond in writing to the member of public and will give them a formal response and offer a meeting again.

    This has also been taken to the joint HOSC meeting and have explored the subject in detail and HOSC have stated that they don’t wish to look at the issue further.”?


    2. Why have you endorsed the introduction of CBT within the ME and CFS Service against recent best evidence? (See detailed critique- JSCC_&_HOSC_ME&CFS_Patients-Carers_Concerns_v1.10/Patient_carer_feedbackv1.4.pdf)

    3. What are you going to do about the evidenced severe unmet need for Severely Affected ME patients? (See detailed critique-(JSCC_&_HOSC_ME&CFS_Patients-Carers_Concerns_v1.10/Patient_carer_feedbackv1.4.pdf)

    4. Why has my question about the 5/10 year plans for each Norfolk and Waveney CCG regarding ME and CFS Services not been sent a response?


    Patients have formulated an official complaint document which we will release to each CCG individually after the JSCC April Meeting.

    See detailed critique;
    JSCC_&_HOSC_ME&CFS_Patients-Carers_Concerns_v1.10
    Patient_carer_feedbackv1.4.pdf

    After the meeting the documents will be sent to each CCG separately as an official complaint.
    ** on behalf of;

    Norfolk and Suffolk ME and CFS Patient / Carer Group,
    ME Support Norfolk
    Suffolk Youth & Parent Support Group
    Elevate

    (together these groups represent over 600 ME & CFS Patients and Carers in Norfolk and Suffolk)
     

    Attached Files:

    Last edited: Apr 15, 2019
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  5. Esther12

    Esther12 Senior Member (Voting Rights)

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    Sorry to hear that @Suffolkres, especially after you'd done so much good work.

    There seems to be so much set against us here in the UK.

    Thanks to you, and everyone else who is working to try to stop things being too terrible.
     
    Last edited: Apr 15, 2019
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  6. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Salford Royal (NHS)

    both assessments with psychologists; where's the biological?

    recommended websites, top of the list Action for ME and AYME.

    http://www.srft.nhs.uk/about-us/depts/clinical-health-psychology/patients/about-our-service-cfs-me/
     
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  8. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    https://nspccro.nihr.ac.uk/

    Who are the Research Office?
    We are the Norfolk and Suffolk Primary and Community Care Research Office.

    We work with the NHS, academics, health and social care practitioners and commissioners, patients and the public to develop, manage and support the delivery of healthcare research.

    We are hosted by NHS South Norfolk Clinical Commissioning Group (CCG) on behalf of all Norfolk and Waveney CCGs; we act on behalf of all CCGs in Norfolk and Suffolk, Norfolk Community Health and Care Trust (NCH&C) and East Coast Community Health Care CIC (ECCH).
    The above were asked by the CCGs a favour to produce a couple of "Evidence Briefings" at no cost!!

    The briefings are interesting and may help against the above- Salford Royal Statement!
    My marked up copy attached https://drive.google.com/file/d/1pISdG0mus4GFWqffkJ8O6VAfx3yO-O0q/view?usp=sharing! Look at ;

    6 Rehabilitation Therapies!
     
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  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Cambridgeshire and Peterborough NHS guide to Graded Exercise therapy
    "To equip people affected by CFS / ME with the skills for self-management towards a better quality of life’."
    Jan 2017, reviewed in Jan 2019
    http://www.cpft.nhs.uk/PDF/Miscellaneous/Graded Exercise Therapy Booklet May 2017.pdf

    eta: they really don't get it do they(?)
     
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  10. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    I am appalled at what this says. The service obviously has been taken over by aliens and is nothing like the one Terry Mitchell was in volved in. Terry would turn in his grave.......
     
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  11. JemPD

    JemPD Senior Member (Voting Rights)

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    "Thank you so much" - says the 6year old who has never done any exercise in his life prior to becoming ill....

    oh, i'm sorry is that not who this advice was intended for?

    Patronising *******!! Honestly do they think none of us were ever athletes before? that none of us had ever done any exercise - to be able to recognise the difference between the normal sensations experienced after unaccustomed exercise, and the sensations of illness?
    OMG i need to leave the forum my head is going to explode tonight
     
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  12. Trish

    Trish Moderator Staff Member

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    They are just making stuff up. Appalling lies.
     
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  13. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    I think there is something to consider in here.

    When there is a good and proper service it would be a good idea to spend some of the time in mentoring someone and nurturing the people around the decision making so as to have continuity in understanding and care when one inevitably leaves. I know that people are probably quite fully booked with things that need doing but it's something to consider.

    Although I may have got the wrong end of the stick with regards to how this works. But it seems to me every time there is a vacuum the BPS are ready and waiting to fill the space.
     
  14. jaded

    jaded Established Member (Voting Rights)

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    I’ve had first hand experience with the appalling “service” if you can call it that at Cambs and Peterborough.

    They pushed the whole fear of exercise/deconditioning model on to me. When I responded by saying that the theory has no logical scientific basis they got really angry and defensive.

    They didn’t want to hear about any of the biomedical research going on. They follow BACME so this was not surprising. They weren’t even aware that the NICE guidelines were up for review when I saw them in Jan-July 2017 despite it being published on the NICE website.

    They were very patronising, rude and very unknowledgable. Even telling me I focus too much on my PoTS when I was trying to explain my difficulties with exertion. When I also told them I have to retreat to my bed during crashes as I can barely walk by that point and the senses are on overload with intense body wide pain, they challenged me by saying ‘why do you go to your bed to rest, you must have a psychological attachment to it’ :banghead: :rofl:

    All of this was in front of a student OT. Extremely frustrating that misinformation was being perpetuated and I was probably labelled a typical non complaint patient who’s making myself ill!

    Just another typical story of medical abuse which shouldn’t be going on these days. I was/am an NHS healthcare professional and I don’t think they like it when there’s an expert patient in front of them. Oh and I was a national judo player once upon a time so am very familiar with the exercise I can no longer do.....
     
    Last edited: Apr 23, 2019
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  15. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    So sorry to hear this feedback about this fellow Eastern region service which has been abducted by BSP 'aliens'.
    What happened to the Cambs local support group who we used to liaise with?
    Back in 2004, we went to meetings in Cambridge to help knock the proposals into shape!
    Peterborough under Dr MItchell and nurse lead Barbara Boyden was ok?! Dr Riley GPwSi??
    She/he retired years ago so it's about turned it would appear.

    This Friday I will go and do battle with Joint Health Overview and Scrutiny... again. We have had this on their books for 10 years!
    Having invested 15 years of my life on this (I don't have ME) I am not about to throw the towel in yet.
     
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  16. SallyC

    SallyC Senior Member (Voting Rights)

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    Wow - this is breathtakingly bad. Useful evidence for medical negligence though.
     
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  17. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    And what better example to take to the NICE REVIEW and Committee!
     
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  18. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Cambridgeshire and Peterborough NHS guide to Graded Exercise therapy
    "To equip people affected by CFS / ME with the skills for self-management towards a better quality of life’."
    Jan 2017, reviewed in Jan 2019


    This Health Service News item on Patient Safety is interesting today and follows me calling the nurse lead for Cambs & Peterborough Service and having a 'full and frank' conversation with her.....!

    I will leave forum readers to use their imagination here! I have had contact with her before about 2 years ago when she was first in post.


    I said that a leading journalist ( Jerome B) had suggested harms from GET etc might lead to claims for compensation and if a service pushed this approach, or the CCGs Governance insist on it,( NICE Compliance....) there may be some liability.........

    She explained, CCGs insist on NICE compliance bah blah...., staff not empowered to argue... Blah blah, ......staff have to annually sign a document that they 'adhere' to NICE Blah blah......,
    Staff know GET doesn't work, staff don't push it ( allegedly)..... despite what's in their leaflet (that just covers their backs with senior CCG chiefs)..... bah blah, gently trying to change that info and get agreement from senior management CCG to do so.....

    Positive that NICE will change things!!!!!!!

    She seemed unaware that NICE is surrounded in controversy etc and said there were "moving gently towards 'anticipating' NICE removal of GET, in the new guidance!!!!!"
    She said that was the key impression as members of BACME.....Ahhhh!!!!!!

    I said sorry to bring her bad news but......
    I said from my involvement and perspective, I do not share her confidence in the system and it was NOT required to push all in 2007 guidance anyway! ( Suffolk CCGs don't, never have!)..
    NICE possibly only agreed to review as several people had suggested their non compliance for 2007 with current legislation and and the possibility and threat of a JR if they didn't reconsider.....

    Then said matters could not rest there and remain there until 2022!

    I would contact the Carol Anderson - Director of Quality, Patient Safety and Experience and say, as a member of the Eastern Region Clinical are involved with Cams and Peterborough many years ago.
    I had concerns from my group's " Benchmarking" service investigation needed to take to Joint Health Overview & Scrutiny tomorrow....... https://www.cambridgeshireandpeterboroughccg.nhs.uk/about-us/whos-who/carol-anderson/


    a couple of years ago

    They don't really do domiciliary and secured a consultant briefly for 2 severely affected patients ( psychiatrist!) to secure 'exceptional' in patient funding.

    She said all Independent Funding Requests are being refused routinely by the trust due to lack of £ ( ....lack of care, interest and understanding of the need it appears)

    There but for the 'grace of god' is where we could be too without patient carer group vigilance and fuss.......

    I also asked about the local support groups and it seems they have fallen by the wayside since 2009 ( and the HS reforms).

    Anyone in Cambs & Peterborough can contact me to set me right if I have got this wrong- ( private conversation or here0 but I was so mad about the S4ME postings, I felt I had to make a fuss!


    "Top CEO says government sending 'wrong signal' on safety
    By Lawrence Dunhill25 April 2019

    [​IMG]
    Sir David Dalton has urged health and social care secretary Matt Hancock to view patient safety as a “firm priority” for the NHS, warning progress made since the Mid Staffs scandal could quickly disappear."
    I alerted her to the fact that her service literature was being critically discussed on a key national forum and gave her the op to justify their stance........
     
    Last edited: Apr 28, 2019
  19. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    "What would you do in my shoes?" Doing battle at Joint Health Overview and Scrutiny!! ...for 600 local group members..
     
    Last edited: Apr 28, 2019
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  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    New ME/CFS clinic opens in Aylsham

    https://www.ecch.org/news/posts/2019/may/new-mecfs-clinic-opens-in-aylsham/

    don't know any more.
    anyone have any experience of this or their other clinics?
     

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