MINUTES OF THE MEMBER’S MEETING HELD ON 20th OCTOBER 2021
- Objective:
The meeting was held to provide feedback from those who attended the NICE roundtable meeting on Mon Oct 18th. The Chatham House Rule, which prohibits attributing comments, was respected.
- Feedback/Comments:
- The meeting was optimistic, constructive and well chaired.
- The team from NICE handled themselves very well.
- NICE responded to most of the comments and challenges and our representatives only needed to contribute when called upon (which was our agreed strategy).
- There appeared to be three overriding concerns: (1) ignorance – and the critical need for training and education across the medical establishment (2) semantics and words matter – the recommendation for some minor ‘tweaks’ to the language used (3) deep concerns about commissioning services and resources.
- Publication is likely to be sooner rather than later, although the final document may be sent to the attendees for comment which may mean further delays.
- Examples of best practice were recommended.
- ‘PEM’ was accepted.
- The possibility of a joint statement with the participants and an ongoing ‘forum’ to maintain momentum, collaboration and understanding.
- Our impression was that there was grudging acceptance of the guidance by the objectors.
- Ongoing concerns around safeguarding of children there was robust input from “our side” in response to the points raised, with provision of context; indications were that the final guideline will if anything be even clearer on this (hard to say more in view of CHR)1`
- Next Steps:
- Our preparation paid off and Peter White’s immense contribution was acknowledged and thanked.
- We now need to ready for imminent publication
- The immense task of ‘rolling-out’ the new guidelines is to become a priority and a plan and programme are to be agreed (NM).
- Case histories are to be published (WW).
- Explore a recommendation to introduce a ‘yellow card’ system.
- Approach BACME to foster greater co-operation.
- All policies, strategy and implementation are to put the patients’ care FIRST.
- A statement is to be published within the next 24 hours which members will have sight of first so their comments can be taken on board.
- PW is to distribute his comprehensive prep documents to members.
- AOB:
- The implications of Long Covid for ME are to be discussed further at the next meeting.
- Members are to be consulted on the introduction of SLACK to improve communication and consultation.