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  1. Suffolkres

    NICE announces next steps in updating its guideline on ME/CFS

    No guesses for what I am talking about here! ( I also posted this on thread about closure of East London Service) Oh how the mighty have fallen- "Barts and services linked to it such as an in Essex..." I learnt that funding was cut by the CCGs by 50% last year, when I was researching for our...
  2. Suffolkres

    NICE announces next steps in updating its guideline on ME/CFS

    An addendum- most of the statements in the bubbles I took from NICE's own literature on their website. (Say it and it is/will be done)- ....or not as the case may be...! I did it in preparation for the Engagement meeting.
  3. Suffolkres

    The Chronic Fatigue Service run by East London NHS Foundation Trust (ELFT) is closing

    Oh how the mighty have fallen- "Barts and services linked to it such as an in Essex..." I learnt that funding was cut by the CCGs by 50% last year, when I was researching for our local dilemmas in Suffolk & Norfolk. In my view, the closure of services has nothing to do with NICE -(who I...
  4. Suffolkres

    NICE announces next steps in updating its guideline on ME/CFS

    I received no alert about this which is unacceptable! I registered as a Stakeholder then was told by NICE HR that I was not permitted as a local/ regional group! I guess it will be worth muscling in on the May Scoping just to give them a hard time….. NICE is all about the noise, not any...
  5. Suffolkres

    EDS and ME - is there a connection? hEDS

    Jo, I suggest a conundrum here! NICE need to catch up with "patient experience" even if the "science" at present is not there. They might actually learn something and be able to effect some positive change. People you have "close to you", I suggest may be part of the problem. They are...
  6. Suffolkres

    Format of NICE stakeholder meeting?

    From what I remember and what i'm checking through now, the legal challenge would be different this time due to changes in status of NICE since then, 2005 and in 2013, and to the new legislation and hierarchy of accountability and responsibility, 2012, 2014 and recently Accounting Officer...
  7. Suffolkres

    Format of NICE stakeholder meeting?

    Sally, I would be happy to share my final 3 pages with your two so we know we may be singing from the same hymn sheet.....? let me know. (my 3 pages sits alongside my submissions in both March, -via 125% group response to NICE Intermediate Care and reablement and my July response to the review...
  8. Suffolkres

    Format of NICE stakeholder meeting?

    I too have prepared "one I did earlier"- 3 pages! I suggest we also send them electronically and request written replies formally to any points not raised or covered tomorrow? This morning I have come across some useful background material about compliance and accountability.........DH...
  9. Suffolkres

    Format of NICE stakeholder meeting?

    I am grappling with a significant question I wish to have answered by NICE for tomorrow. I want to know if they are obliged to achieve legal compliance with the legislation, in particular the following; 2003 Health & Social Care Act (Community Health & Standards, ( Standards for Better Health)...
  10. Suffolkres

    Format of NICE stakeholder meeting?

    Are NICE to be toothless wonders?
  11. Suffolkres

    Format of NICE stakeholder meeting?

    Some of my thoughts for Tuesday........
  12. Suffolkres

    Format of NICE stakeholder meeting?

    I believe they, NICE are keeping their powder dry....
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