Tourette Scotland Annual Report 2008
Tourette Scotland is a small organisation that covers the whole of Scotland (and often receives queries from further afield). This is a mammoth task, especially given that we are such a small team and mainly volunteers. We have now, however, been in existence for 15 years. The fact that we are now aware that it is expected that there are 1 in 100 schoolchildren with TS (Dr Jeremy Stern 2005) and because of increased demand for our services we are reviewing our work. What is obvious is that we have achieved so much over the last 15 years but we must now look to the future and plan how we intend to move forward. It was with this in mind that we applied to Lloyds TSB Foundation for an Organisational Review at the end of last year which was successful. This then led onto a successful application for assistance to enable us to produce a 3 year strategic plan, a funding programme and marketing strategy. We have been working with consultants over the last few months looking at these issues. We also consulted with the membership at the Spring Meeting where we set up workshops including one for young people. We sent out questionnaires to the membership. It was vitally important that we had our members' views heard as it is the people who live with TS that really understand and know what could improve their lives. Everyone's views will be taken into account. We now have a draft strategic plan which we hope to finalise early next year. This will help us focus on the priorities so that we may tackle the main issues that affect people and families living with Tourette Syndrome (TS). Thank you to all who have contributed to this.
In the meantime, we have not been resting on our laurels and continue with our main activities. We have 200 members and a mailing list of over 500 individuals and organisations. Information Packs are sent out on joining the organisation and professional packs are also sent out on request. We continue to produce a regular newsletter and are working on revamping the website that Lauren Strachan and Jon Carlos have worked so hard on. We are again looking for members input into what they would like to see in the website and will be discussing this later today.
We continue to get contact from individuals and families looking for support, information and advice. It is so obvious that there are still so many obstacles, barriers and battles to overcome when people are trying to get the help they require. Education still remains a great problem as does negotiating around any of the local authority services including health. We spend some time advising people of their rights as well as signposting to other appropriate organisations or authority. This of course entails a lot of research and updating by Janice, Patricia and Ruth on a regular basis and we continue to do this work week in week out. We also appreciate any information and evidence of good practice that our members have to share.
The media also contact us on a regular basis and there have been some newspaper and magazine articles as a result and a programme is in the making as we speak which you will learn about soon.
The Spring Meeting was held in April and was a great success. It was well attended which we were particularly pleased about as this was the time of the petrol shortages! The feedback was very good and we got the message that people felt valued and involved so we hope that we can continue with that ethos.
We have now 3 local networks as we recognised the need for more local contact for people. Debbie Barnett is co-cordinating the West of Scotland network. This is going particularly well. They have had several meetings including a family day which I understand was enjoyed by all. Fundraising has also been carried out by some people in the area to help the group develop which is heartening. The Fife network is co-ordinated by Patricia Sinclair and Janice Mylan. Again we have had several meetings including a visit to the pub (adults only of course), a picnic in Burntisland and an Information Evening at Elmwood College in Cupar, Fife. This was well attended, particularly by education professionals all keen to learn about TS. A fundraising evening is being planned soon and we then hope to have a family day too, early in 2009, along with other events to attract all ages. Dot Achenbach and Mags Henderson are co-ordinating the Lothian and Borders network and have sent out posters and have held a couple of meetings. They hope to attract more people in the near future.
Patricia and Janice have been piloting a training session "Introduction to Tourette Syndrome" over the last year or so. We have done 10 presentations so far and this is without advertising this widely. These presentations have been all over Scotland and mainly to professionals. These have mostly been education staff but we also presented to youth workers and various therapists in Stirling and just this week to clinicians from 5 Children and Mental Health Teams from across Lanarkshire. John Davidson and Dot Achenbach along with Pat and I also did a joint presentation at a school in Dunbar. The evaluations have been very good and we intend developing this side of the work that Tourette Scotland does. As part of this process we are to give a "wee" taster of the presentation to the members today for your valuable feedback and suggestions.
Funding continues to be of concern. Core costs such as rent for the office, utility bills, insurance etc alone are on the increase and have to be paid. We also have to find so much more to keep our projects afloat, salary and volunteer expenses along with new ideas etc. We are working with a consultant via Lloyds TSB in order to put together a fundraising strategy and hopefully raise funding for the various projects. We have secured funding towards a salary for a Development Manager over 3 years from Lloyds TSB through their Standard Grant scheme and are actively seeking the shortfall. It will be part of the new worker's remit to apply for funds through grants etc once in post. Scottish Community Foundation also kindly granted us £5,000 towards a salary for a co-ordinator to investigate the possibility of developing the work we do with people across all ages. Ruth, who also does our administration, now also works on this for part of the week. Plans are being worked on and you will hear more about how we hope to include more people across the generations shortly. We are grateful to both Lloyds TSB Foundation and Scottish Community Foundation for their continuing support.
We also appreciate the support of Workload for their generous donation again this year. This meant so much and has been a part of enabling us to continue. There have also been a number of donations including £2,000 left by Duncan Logan who sadly passed away at the end of last year. He was the treasurer for the group for a number of years and will be sadly missed. Janice's sister-in-law asked for guests at her 50th birthday party to give to Tourette Scotland and Cancer Research and Patricia's Auntie Janet and Uncle Jim also did the same for their Golden Wedding Anniversary celebration. Various individuals also organised fundraisers including Olav Skretteberg and Crawford Buchan "Tee Off" golfing event at Craigie Hill Golf Club, Perth for the third year running where funds raised were shared with the Dystonia Society. Money was raised through the Great Scottish Walk by Duncan Dyker (one of our Dads) and Janice, her sons David and Michael and friend Korine along with youngsters at the Perth Great "wee" Scottish Walk. Dave Barnett, Adam Barnett and brother-in-law Stephen Vallance and ably supported by Debbie Barnett impressed us all as they walked the West Highland Way in August in mainly pretty grotty weather. Dave came near to getting hyperthermia and no doubt ached in places he didn't know he had! Hannah McLafferty raised £500 by running in the Sheffield Half Marathon. Liz Rowan's sister Val Kelly completed the Loch Ness 10k run recently. A coffee morning in Comrie organised by Patricia was also a resounding success. There are too many people to mention but we are truly grateful to you all. These and all fundraisers are so important not only for monetary reasons but also in raising awareness on TS. If anyone is interested in organising or taking part in a fundraiser you should contact the office to see if we can be of any help. We also have a small supply of T-shirts and other items should you wish to advertise your support.
Patricia, Janice and Ruth have attended a few conferences/consultations on your behalf this year. We have been particularly interested in the moves towards improvement of Children and Mental Health services. We attended "Finding the String" which shared and discussed some of the good practice that exists at present. We also have been staying up to date with the development of the Scottish Managed Clinical Network for children with complex mental health which has been formed this year. Although TS is not a psychological condition most people do get their health services through this forum so we felt this could not be ignored. We also keep up to date with the work of the Neurological Alliance Scotland and Long Term Conditions Alliance. Mindroom is another organisation we have good links with. John Davidson and ourselves worked with them in the past in being part of a brochure on a variety of additional needs including TS sent to workplaces and Job Centre Plus etc last year and this year David Mylan agreed to be "the face of TS" for youngsters for an education brochure sent to all schools across the UK. A survey has also been carried out by them across all schools and they are officially launching a campaign at the Scottish Parliament which Janice will be attending in November. Patricia and Janice were also part of a meeting with MSPs and councillors in Perth in September where we made some connections which we hope will come to some fruition. Patricia and Janice recently went down to Market Harborough in Leicestershire to a conference organised by Cerebra where there were presentations by a number of people on some of the spectrum of disorders that also can exist with TS. Dr Andrea Cavanna, a neurologist from the Institute of Neurology in London and co-author with Professor Mary Robertson on TS and The Facts (which is coming out in up-dated version shortly by the way) gave an interesting talk on TS including some of the up to date research. We made good links that day.
The TS Clinic, supported by Dorothy Taylor was still in existence up until May this year but as you are aware she has now retired. A few of us went along to her retirement celebration in Fife which was most enjoyable and we hope you enjoyed the poem that Dorothy shared with us all. We also had our own "wee" do for her as we felt that our members wanted to have the opportunity to thank her for all she has done for us over the years. She was thrilled with her gifts and a good time was had by all. She is currently abroad but is back in the country next year and she intends staying in touch with us.
Our Education Advisor also had to stand down recently as he is working abroad. We will be addressing the fact that we need to attract interest from professionals in a formal way in the near future.
Finally, we must say a huge thank you to all the committee, Ruth Smith our employee, especially for your patience, understanding and hard work and all our volunteers. We couldn't do this without you.
We look forward to the next twelve months and hope that we can grow in strength so that we can pass that strength on to people and families living with TS to enable them to lead a fulfilling life free of stigma and prejudice.