Tourette Scotland, Bridge Project
Tourette Scotland aims to provide a focal point for a network support service for members, including opportunities for one to one support sessions across the generations. A series of user-led meetings have been held, open to people with Tourette Syndrome (TS), their families and carers. Participants spoke about the issues affecting them, and began to identify possible solutions.
What is TS?
Tourette Syndrome (TS) is a much misunderstood neurological condition. It is more common than generally realised, with about 1% of school children identified as having it in some form. The more extreme cases have distorted public perception. Click here to watch a short video explanation from a NHS consultant neurologist. Although it is normally identified in childhood this is not always the case. Click here to watch Joanna’s story. She was diagnosed with Tourette’s syndrome in her 30s, and has had mild symptoms all her life. She describes the effects of different medications and how she manages now without any.
Through its country-wide meetings the project in Scotland has identified the following important issues affecting people of all ages:
- interacting in the wider world
An adult group has been set up catering for ages 18 to 80, along with four local networks covering Fife, the West of Scotland, Lothian and Borders, and Highland. All the meetings are user-led, involving recreational activities, speakers and discussion. An additional group has been set up to make recommendations to the government about the Disability Living Allowance. A training pack designed to raise awareness of TS has also been developed and is delivered to staff in local authorities by anyone with personal experience of TS.
Tourette Scotland secured funding from Lloyds TSB to develop a three year strategic plan, action plan, fund-raising and marketing strategy, all of which have been accomplished. A Project Development Worker started in her post in September 2009, and is working with the Management Committee, volunteers and networks in developing intergenerational work. She has been successful in obtaining further funding to enable activities to continue. Currently there is an adult group but local networks for all ages are planned, with the emphasis on how people can help each other. Tourette Scotland also received funding from Children in Need, and held an Activity Weekend for families and individuals affected by TS in August 2009, where adults with TS acted as Team Leaders at a Scottish Outdoor Centre. A Teen Weekend is planned for the spring 2010 to set up a Youth Forum.
A number of challenges arose when planning the project
- how to reach as many members as possible across the whole of Scotland
- communication had to be by post for many older members
- out of hours work was required
- planning was time-consuming.
The local networks now enable more face-to-face contact.
Some of the lessons learned were:
- be flexible and prepared for early setbacks
- arrange for clear and regular communication
- have a realistic plan and budget
- have funding in place from the start, if possible.
- the more volunteers the better – a cohort of older/younger members who became ‘buddies’ were intrinsic to the project’s success.
Tourette Scotland is a service for all ages. The project has reduced members’ sense of isolation and increased self-esteem. It has helped people (and their families and carers) to feel more confident in getting on with their personal lives and meeting with professionals, employers and the general public.