Ataxia UK Sheffield Branch

    1) last meeting

     SHEFFIELD  AND  DISTRICT ATAXIA  BRANCH  NEWSLETTER

                          APRIL 2013

Our April meeting was different and a bit special, as we were pleased to welcome Sue Millman (Chief Exec) and Tina Thatcher (Branch Development Manager) from Ataxia UK. We had a very lively and interesting meeting, and I for one was really impressed with their tireless energy and enthusiasm, and with the enormous amount of work done by just a few people at AUK. Their visit really helped to make us feel part of a national and exciting organisation.

Sue told us that there are now over 60 branches, involving 1200 individuals across the country, and described some of the services AUK offers, for example, the advocacy service, which has helped to recover about half a million pounds for members from insurance companies who were ignorant about ataxia. She said how difficult it is to decide on AUK’s priorities - funding research or support for members – and maybe both are equally important. Money is always short, especially in these difficult economic times, and they have found that partnerships with similar organisations abroad makes money go further.

The results of the current member’s survey, featured in the latest edition of the Ataxian, will be important in finding out what we all think about this, and Sue and Tina urged us to complete and return ours.

The subject of fundraising and the necessity of extending existing projects or finding new ones led to the real purpose of the visit – to tell us about the proposed Peer Support Scheme for Sheffield. AUK recently won a competition (deservedly!) and is keen to spend the winning money on this. There are already schemes in London, Oxford and Newcastle, whereby trained volunteers meet newly-diagnosed patients and chat with them, and help with a survey form. Unfortunately, there is no convenient available space in the Sheffield department, so the scheme hasn’t been extended here in the same way. But now there are other ideas!

Three short videos have been made to give important clinicalinformation  - by Dr. (or rather Prof.) Hadjivassiliou, Diane Friend and the Neurological Enablement Service (OTs,physios, speech and language therapists and a psychologist) and it’s planned for these to be shown as the centre of a dayfor people with a recent diagnosis, run eventually by volunteers, who will also facilitate groups focussing on support. Thus there will be an informed response with a human connection for new patients, rather than the internet or nothing. There is already a draft programme for the day, and a professional trainer will be help to train the volunteers. Then when a suitable space is found, the support group can start.

Four of the group were interested in being involved with the scheme, and if you feel similarly interested, contact Sue atsmillman@ataxia.org.uk.

We also touched briefly on the idea of a regional conference in Sheffield, which some members of the group have raised. Sue assured us that we could do as much as we were able, and that AUK would do the rest. Finding suitable premises would be something that we could do.

Altogether a really interesting meeting, which showed how important connections with the centre are. We look forward to our next meeting, when Isobel, Toyah and Alex can tell us about the Branch Officer’s meeting, which they’re going to next weekend.

2) Future meetings

 Thursday May 2

A visit from Diane Friend, the specialist Ataxia Nurse.

 Thursday June 6

We hope to arrange a visit from a dietician who is particularly knowledgeable about gluten-free diets.

 Thursday July 4

Madison Bridgewater from AUK will come to talk about fund-raising.

3) New Members.

It would be really nice if more people could come to the meetings, or to hear from you if you can’t make it. Maybe we can do something  to make coming easier for you. If so, let us know.