The workshop held on Wednesday 2 October at the Friends? Meeting House , Euston Road covered campaigning/fundraising, partnership working, supporting people with MND.? E. Kent Group was asked to provide a talk about their support meetings and facilitate a group of people interested in discussing this area.
The morning session was a lengthy presentation by Raj Johal, the National Campaigns Manager about campaigns and campaigning.? Campaigns are the centrepiece of attempts by MNDA to create awareness of Motor Neurone Disease (MND) and to influence Government, local government and also various health services, about the diagnosis and treatment of MND.
The MND Charter campaign is seeking to get many thousands of signatures, which will help our association as it seeks to negotiate with Government, the NHS and other care providers.? The more people sign, the more influence we are likely to have.? Part of the campaign includes writing to MPs to make them more aware of MND and to gain their support both locally and nationally.
The deal a fair hand to Neurology campaign, see MNDA joining forces with Multiple Sclerosis Society, Parkinson?s UK and the Neurological Alliance to campaign for an end to the postcode lottery of care for people with MND, and other neurological conditions in England.? This is a great example of partnership working to achieve a common aim.
Judy Keay of East Kent Group spoke about support meetings.? Which are 6 times a year at 3 venues:? Canterbury (Sturry), Folkestone and Ramsgate.? The Canterbury meeting is held at the Sturry Scout Hall with refreshments being supplied by the Beavers.? Folkestone?s meetings are held at the Red Cross Centre and Ramsgate uses a garden centre which is very popular with pw MND and carers as it provides an extra bonus of retail therapy.? ?Local politicians and other dignitaries, such as the Lord Mayor of Canterbury and Medical Professionals are invited to attend the support meetings, ?which helps to raise awareness. The Group regularly reviews venues and attendance at its regular meetings and is always open to change. ?We recently carried out a survey of the wishes/needs of those attending and a significant number would like speakers or some form of therapy, e.g. reflexology, hand massage to be offered at support meetings.
After these presentations, the workshop was divided into three groups; to discuss how we might use partnership working for support, campaigns and fundraising.
The group interested in discussing support meetings further looked at various ideas and shared current practice.? There were some new ideas for us all to take away with us.? One branch/group offered special parties for Christmas and another one for Valentine?s Day.? A further branch/group provided a monthly drop-in lunch and has increased numbers attending from 6-30 people (11 pw MND).? Provision of a lunch is a great winner with carers especially.? Another suggestion was that support meetings/parties/lunches could be publicised via OTs, SALTS, physios etc.
The Fund Raising Group had some experience of working together with other groups.? All agreed it was sometimes not possible due to geography and lack of suitable manpower.? There were however many interesting ideas discussed.? One of these involved working with other neurological groups in the same area, who might be willing to join together in major fund raising activity; another involved working together with other Branches at major events, such as The Kent Show, so that manning could be spread across a much larger group of volunteers.? Both seem worthy of consideration.
One of the most interesting points to arise at the workshop was as the result of discussions around how often people, including health professionals fail to recognise MND.? Several suggestions put forward were that the only way round this is always to start by saying Motor Neurone Disease in full before going to MND.? This helps clarification at the outset.