MINUTES OF A MEETING OF THE FORWARD-ME STEERING GROUP

HELD ON WED JUNE 15th 2022

1. Actions from previous meetings:
   a. Nina’s replacement: It was agreed that we need a practicing medical voice in the group but are still awaiting a recommendation from Opal. Members are also to consider other relevant individuals.
   b. Millions Missing: Denise confirmed the date as Tues Sept 13^th in Parliament Square, between 1300 – 1500. Further information will be forwarded to members in due course along with a call for volunteers to assist with specific tasks on the day.
   c. NICE Guideline service specification: We are still awaiting recommendations from Bill Kent.
   d. RCGP forthcoming meeting: This was held on Thurs June 16^th and Charles will be preparing a summary of key points of the meeting to distribute to our members shortly. We requested that they make introductions to colleagues at other Royal Colleges, and we will be sending them our ‘wish list’ aimed at better informing GP’s about diagnosis, support and care, with special attention to the new NICE guidelines.
   e. Approach to RCPCH re: F11 guidance: Tony Crouch summarised his ongoing concerns and the consequences around false accusations of ‘fabricated illness.’ This is a very serious issue that will now be addressed by a sub-group, led by Tony in order to develop an action plan, comprising Denise and Nigel Speight amongst others. Catherine offered to ask Carol Monaghan if she would also take part.
   f. Funding and investment: Following the last members meeting, when Peter presented his research report on comparable giving against other niche charities, Andrew voiced his doubts around the appetite of our main charities to merge in the foreseeable future, whilst, in his opinion, this remains desirable in the longer term. As a next step, and following a recommendation by Neil Riley, a meeting has been arranged with some of the MEA Trustees to see whether our strategic thinking around significant funding growth could be adopted by them as a potential model for the future. Sonya urged us to maintain a spirit of collaboration during these discussions and to transparently share the outcomes of any future strategy, which was acknowledged.

2. DHSC:
   g. Sub-group representatives: This appears to be finalised and meetings will begin very shortly and FME has secured a number of places on the various groups.
   h. FME role, relationship and contribution: Sonya has led this initiative and was thanked for the major step forward in at last recognising the needs of PWME, and the role that government and the health services can play in working towards a far greater focus on research, advocacy, education, support and care.
   i. Comms plan: A communication plan is emerging on how best to keep all relevant parties informed of progress

Next Meetings – Members 10am Wed July 13^th; SG 10am Aug 10th

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