Our Autumn Get Together was held on Saturday 17th at the CMS Conference Centre Oxford. Over eighty members attended the venue which was modern, light and airy with good disabled access to all parts.

The day commenced with registration and coffee, at 10 am Sheila Hawkins’s opened the day with a short welcome and an introduction to the day’s events. The first speaker was Nic Bungay from the MDC, Nic spoke about the importance of campaigning and how work was going on at parliamentary level in both the Houses of Commons and Lords to raise awareness of the issues and short falls in services for people with Neuromuscular conditions.

Since the publication of the Walton Report, which highlighted the problems we are asking MPs why more is not being done. The All Party Group on MD in parliament is chaired by Dave Anderson MP, Lord John Walton, and Baroness Celia Thomas. The MDC have set up 10 regional muscle groups

which are campaigning for improvements in local services. Reports are available from MDC for each region for campaigners to pass onto MPs, the Press, and PCT’s. The West Midlands is awaiting the outcome of a recent neuromuscular review. The South East coast and Oxford areas are also being reviewed.Nic has met with the Health Minister to ask what support and care is being given to MD sufferers. He has appeared on the Today Programme and in the Independent on Sunday. We also heard updates on the Trailblazer Group for 16-30 year olds their campaigns and new facebook network page.

Jane Stein regional care advisor for Oxford spoke about the adult Self-Management packs. The Joseph Patrick Trust and how they can help with grants towards equipment more information. Jane also did the scapular fixation workshop in the afternoon http://www.muscular-dystrophy.org/how_we_help_you/equipment_grants

Les Sutton (Disability Consultant/ Social Worker trainer and ILF assessor) gave a very detailed and informative talk on Community Care, Assessments, Direct Payments and the Independent Living Fund. Les ended his talk by saying that the most important aspect of all the assessments he talked about is the “outcome for you!”

During the Lunch break there was time to visit the Display room to see

• Easy Care Products: With the Genie wheelchair
• Gowrings Mobility: Blue badge sat nav and adapted vehicle.
• Mountway: Bath chair to promote independent living in the bathroom.
• Emma Mowatt from MDC manned their support and information stand.

After lunch Marita Pohlschmidt (MDC Research) spoke firstly on the research grant programme which is currently funding 25 live projects covering 16 MD diseases. Marita also spoke about new initiatives and translational research. Two cheques totaling £3000 were presented to Marita by Sheila Hawkins, from the group to be used for research into FSH-MD

The final speaker of the day was Lisa Barker from the Derbyshire Carer’s Association who spoke about ‘Caring for Carers’ (Health Perspective). .Statistics shows that 52% of carers suffer with stress or depression, so it is important for carers to have breaks. Funds and help are available, it is

• NHS
• The Princess Royal Trust
• Carers UK

This was followed by a choice of workshops to learn more about the topics that most interested us.

After a short coffee break we all reassembled in the main conference room for the FSH Support Group UK AGM chaired by the outgoing chair Sheila Hawkins. The accounts for the year were

presented Moira Findlay the groups treasurer and Traceyanne Pilato gave the Secretary’s report.

The groups new proposed constitution was presented to attending members for their consideration. Comments can be sent to the group’s secretary at traceyanne-fsh@hotmail.co.uk

to be received by 10th January 2010 (the original deadline has been extended) copies can be obtained from the Secretary.

Mr. Les Sutton and Mr. Jason Baxter were elected to the committee as member’s representatives and Karen Bayliss was elected as the groups new Chairman

Andy Findlay Vice chairman thanked Sheila Hawkins for all her work over the past five years and presented her with a bouquet from the group.

The date of the next AGM will be decided at a later date and members will be informed. The day ended with Andy giving closing thanks and goodbyes. The group would like to thank the guest speakers and the companies who supported us and the CMS Conference Centre for making the day a great success.

Gill Manning