Chris Downer [CC-BY-SA-2.0 (http://creativecommons.org/licenses/by-sa/2.0)], via Wikimedia Commons

Chris Downer [CC-BY-SA-2.0 (http://creativecommons.org/licenses/by-sa/2.0)], via Wikimedia Commons

Minutes of All Party Parliamentary Group on ME AGM held on Tuesday, 1 July, at 1pm, in Room N, Portcullis House, Westminster

Present :

Parliamentarians – Annette Brooke, MP – Chair; Ian Swales, MP – Joint Chair; Countess of Mar – Joint Chair; Russell Brown, MP – Secretary

Secretariat – Sonya Chowdhury (Action for M.E.) and Charles Shepherd (ME Association)

Parliamentary Observers – work experience placement students
Oliver/Becky (Luciana Berger’s office)

All Party Parliamentary Group Members – Janice and Bill Kent (reMEmber); Doris Jones (25% Group); Phillida Bunkle (Invest in M.E.) and Mary Jane (AYME)

Apologies – Jimmy Hood MP; David Amess MP; Robert Walter MP; Roger Williams MP
Jim Dobbin MP; Kerry McCarthy MP; Caroline Lucas MP; Grahame Morris MP; Sue Waddle (ME Research UK) and Christine Harrison (BRAME) – comments sent via email and included in discussion

1. Welcome by the Chair
The Chair welcomed officers and members of the Group to the meeting. The Chair reflected that despite considerable effort, there has been slow progress with health and benefit-related issues. However, with additional input during the forthcoming year, a concerted effort will be made to address this.
2. Minutes of last AGM held on 12 June 2013
The minutes were approved as an accurate record of the meeting.
3. Matters arising
There were no matters arising that have not been completed or are not addressed below.
a) Research Collaborative
Sonya provided an update on progress over the last year. There has been progress made in bringing researchers together. There have been two meetings where
MRC-funded researchers have presented their work which were then followed by an exploration of any potential overlaps and the possibility of further collaboration.
In September, the first science conference will be held. This is being supported by the MRC and provides an opportunity for researchers to come together to share their work and explore synergies and work on common areas of interest with a view to creating new partnerships/collaborations for new research projects.
In the afternoon of the first day, there is a joint researcher/Associate Member session (non-researchers/stakeholders) which will be facilitated by Sally Crowe. The focus is on how meaningful involvement can help shape and contribute to the research agenda. This session is being funded by the MRC and is therefore free for Associate Members. Information about the conference and becoming an Associate Member is available on the Action for M.E. website.
b) Benefits
Charles provided an update on benefits issues:
i) ESA/WCA and evidence-based review – the fluctuating conditions group is continuing to meet and met with Paul Litchfield in May to press him and DWP to move on a number of actions. The fifth and final review is now in progress and will be presented in November. It is unlikely that there will be any radical changes despite the high level of input and lobbying. There is a further meeting with James Bolton on Thursday where the group will also be discussing the Work Programme and the labour market. Additionally, they will explore how best to support people with M.E. who are well enough to work. MIND has produced a very good report which highlights a number of issues regarding experience of people with mental health issues.
ii) DWP Guidance – Sonya was sent a copy of the guide recently and subsequently and shared it with the group. There are a number of factual inaccuracies (including re: the classifications) as well as some gaps such as PIP. Charles and Christine are the representatives from APPG working with DWP. They gave input into previous drafts of the document at various stages but there have been changes made that they have not been consulted on. A letter from Countess of Mar has been sent to Lord Freud raising a number of concerns – a response is awaited. It was agreed that the APPG would seek to arrange an urgent meeting with Mark Allerton. Sonya will liaise with Annette to arrange this.
iii) PIP delays with assessments – this is being experienced across illness groups. It was agreed that Mike Penning be invited to provide an update re: benefits and any progress made to the group and will be invited to meet with the group at the end of the year. Annette outlined that she has been made aware of local constituents who are new claimants (they have not previously been in receipt of DLA) and have been waiting 9 months or more for their PIP assessment. This means they are left with no money at all. There is a need for APPGs to join together to challenge ministers and challenge PIP and it was agreed that Sonya would take this forward.
c) Health
i) Diagnosis: There has been little progress in securing a meeting with the Royal College of GPs (RCGP) to discuss concerns about diagnosis/misdiagnosis, amongst other things. Agreed that Sonya will liaise with Annette to send an invitation.
ii) Access to specialists: The Countess has had a response to her letter regarding access to specialists out of area from Lord Howe which has been shared with the community.
iii) NICE Guideline: Prof Mark Baker met with Forward M.E. last week and outlined issues with the NICE Guidelines, but also confirmed that there is no scope for the Guidelines to be removed from the static list. Sonya provided feedback at the meeting about the work that they are doing with a guide for patients and suggested that this could be built on. One option would be to produce a patient decision-making aid in the way the newly produced atrial fibrillation one recently launched by NICE. This could be a collaborative piece of work across Forward M.E. This suggestion was welcomed.
d) ICD-11
Sonya led on a joint letter also signed by Annette, Countess of Mar and Charles which was sent to key WHO and ICD-11 revision personnel on 18 March 2014, requesting specific clarifications. No response has been forthcoming from anyone at WHO or ICD-11 revision despite a follow-up letter being sent a month ago. It was agreed that Annette would liaise with Sonya and would write again requesting a response.
e) Education
Mary Jane informed the group that AYME has been working with three other charities on the Statutory Education Guidance for Students with Medical Needs. This has included a survey which produced some interesting findings. One issue that was highlighted by a number of people was the lack of clarity regarding the definition of full-time education in the SEN Code. It was agreed that the Countess will ask a question about this.
4. Election of Officers
All officers indicated their intention to stand again for election. It was unanimously agreed to reappoint all Officers.
• Chair: Annette Brooke MP (proposed by Countess of Mar; seconded by Ian Swales MP)
• Joint Vice Chairs: Countess of Mar and Ian Swales MP (proposed by Annette Brooke MP; seconded by Russell Brown MP)
• Secretary: Russell Brown MP (proposed by Countess of Mar; seconded by Annette Brooke MP)
• Treasurer: Note – the vacant treasurer post does not need to be filled in order for the Group to remain properly constituted. No funds are managed by this Group.
Members of the group formally acknowledged the hard work and commitment of Annette and the officers. Mary Jane also thanked the secretariat for their coordination and support.
5. Forward planning: looking ahead
There are a number of plans outlined above:
• Meeting with Mark Atwood – to be arranged as soon as possible
• Meeting with RCGP – possibly October
• Meeting with Mike Penning – December
• Liaison with other APPGs re PIP
• Continue to clarify the situation with ICD-11
6. Date of next meeting
The next meeting will be held after summer recess; date to be confirmed.
7. Any other business
There was no other business