Annual Report - 31st October 2009
Introduction from our Chairperson
We are very pleased to extend a warm welcome and to say thank you for coming along to the Annual General Meeting of Tourette Scotland.
This has been a year of unprecedented achievement, marked by the realisation of many developments; essentially due to the dedicated and sterling efforts of the staff, volunteers, trustees and advisory committee. Indeed, Tourette Scotland has reached a significant milestone on its journey to delivering excellence in its objectives and overarching strategic aims; as stated in our Business Development Plan 2009-2011:
• Providing information, advice and support for children and adults with Tourette Syndrome and everyone involved in their lives
• Bringing together individuals with Tourette Syndrome and associated disorders to share information and to build much needed peer support systems
• Raising awareness amongst the public and professionals across Scotland
• Working in partnership with allied agencies and organisations; promoting best practice and high quality training to professionals in the field.
In the year ahead, we plan to further consolidate and enhance the good reputation of Tourette Scotland. This will serve to secure the role of the organisation as the ‘first national point of contact’ for statutory health and social care services seeking information, expert advice and guidance to enable them to deliver better services to people withTourette Syndrome and their families.
It is our intention to build further strategic alliances with key partnership organisations and research facilities that will enhance the standing of Tourette Scotland as an authority on the condition. We will strive for wider recognition as a trustworthy and leading authority on developments to improve the life situation for people with this condition.
Furthermore, we acknowledge the increasing importance of widening and strengthening the infrastructure of local networks of support across Scotland; and in so doing, to improve communication and dissemination of information to the public and allied organisations alike.
However, these aims will not be achieved without securing a sustainable revenue income. Accordingly, we intend to direct much of our efforts through the ensuing year to reviewing our work, attaining funding, and formalise our training services and exploring other opportunities for generating new income streams. One of the reviews that I propose for our Committee will be to look at a reduction or cessation of the membership fees, once sufficient funding is in place.
With regard to personnel changes, Janice Mylan, my predecessor in this Chair, directly proceeded to undertake the role of acting manager; and along with the Ruth Smith, along with Pat Sinclair and Tony Lambert, kept the ‘the show on the road’ through 2009. For their steadfast commitment, we are indebted to them and the many volunteers whose services are invaluable to the organisation. Having successfully secured additional longer term funding from the Lloyds TSB Foundation to recruit a salaried Development Manager, we were very pleased to welcome Judy Barrow into a part time post on 21st September.
This was made possible by donations from the Lloyds TSB Foundation, The Soutar Foundation and The Stafford Trust to whom we extend our grateful thanks. We are currently seeking additional, longer term funding to make this a full time position.
In progressing Tourette Scotland’s’ vision and aim to ‘educate and inform... to promote empathy not sympathy’, our redesigned website was launched in March of this year. To date there have been 8000 visitors logged; an average of 1000 each month. We continue to publish the bi-annual newsletter which contains a diverse range of articles as well as issuing numerous Information Packs’ which are customised for each person’s need; i.e. a professional pack and one for carers/parents. There is a small library at the office which is frequently updated. Each publication is read and reviewed which enables us to make informed suggestions should people enquire about suitable reading material. Our website has a link to Amazon which generates a small donation for each sale.
The office received an increased number of enquiries by email and telephone throughout the last year. A total of 258 were recorded with a high proportion of these from health staff, educationalists and employment professionals. We recognise this to be an encouraging indicator of the organisations increasing profile and reputation as a reliable source of information and a trusted authority in the field.
Tourette Scotland membership has increased to a total of 235 registered on the database; with 120 of these joining for the first time or renewing in the previous 2 years.
In our role as a national training provider, we have continued to deliver the popular “Introduction to Tourette Syndrome” courses throughout the year. 11 sessions were conducted for a total of 250 trainees. On completion, all participants were surveyed to ensure the good quality and continuous improvement of our training services. The evaluation results are currently under analysis, but the following quotes speak for themselves:
“Excellent, one of the best in-services I’ve ever been to”
“It’s great that organisations like yourselves exist to raise social awareness, educate….and give support to people with this condition….there is more understanding and tolerance towards Tourette Syndrome. This allows people to live better lives.”
“This session, more than any other gave us clear ideas of how to live and cope with this in the classrooms.”
“We really appreciate all the work and effort that you all put in for not only meetings and weekends, but for all you do to make sure that as many people as possible find out about Tourette Syndrome. Tourette Scotland has been a godsend for us; don’t know where we would be without it. I really believe that my son would not be as confident and adjusted as he is if it wasn’t for the help I got…”
The further development of training services is a strategic priority in our Business Development Plan. Accordingly we are working with local educational partner agencies to achieve the necessary standards to gain certified accreditation for the course. This award will be granted by a nationally recognized accrediting agency; officially recognised as a reliable authority on the quality of training offered by educational institutions. In achieving this status, we will then review our marketing plan and the pricing structure for the training services.
We are keen to improve accessibility by extending our reach to people in their local communities. Developing a locality focus is now underway by means of four ‘pilot’ networks; these have been implemented in Fife, West of Scotland, Lothian & Borders and in August 2009 within the Highland region. Early signs are very encouraging with regular and increasing attendance at these meetings to date. Having now identified and demonstrated a demand, the intention is to seek funding to support sustainability and further development of the groups as permanent local support networks.
A range of social events along with the Spring and Autumn Meetings continue to be very popular; much valued by members and families. Activity weekends which are financed with a grant from ‘Children in Need’ attract a high number of participants. 80 people participated in a recent event at the Scottish Outdoor Centre in Meigle, Perthshire. Those who attended enjoyed the opportunity to get involved in archery, tree climbing, zip wire, drumming workshop, art work, music & sound workshops, photography, relaxation sessions and coping techniques. Remaining funds have enabled us to plan future events such as a Teen Weekend in 2010.
Tourette Scotland is recognised as having an important role in furthering research and we regularly receive requests for assistance. Consequently, we have been involved in various consultations over the year, as well as collaborating with our new medical advisor. Indeed, we are very pleased to welcome Dr Michael Morton, Child and Adolescent Psychiatrist at Yorkhill Hospital, Glasgow. We recently supported a medical student who conducted a care review of paediatric services for patients with TS. Additionally, adult members from one of our groups participated in a research project concerned with ‘Quality of Life’ which was carried out by a psychology student from England.
Campaigning and lobbying government is another important role for the organisation. In so doing, we aim to raise awareness of how few statistics are officially held on record. By addressing this issue, we hope to establish better evidence to qualify for, and attract funding for further research and provision of support and education services. We have on occasion joined up with allied agencies in our campaigning efforts; Mindroom - www.mindroom.org being a recent collaborator with whom we partnered in spring of this year.
We welcomed a significant increase in general enquiries, requests from journalists for information, messages of support and donations following the excellent BBC1 Documentary “I Swear I Can’t Help It” (May 2009). This programme starred John Davidson, Greg Storey and others from the Adult Group. Indeed, we are indebted to the people who took part in the documentary which undoubtedly raised awareness of the challenges facing people living with the condition. Suffice to say a huge ‘thank you’ to all involved for putting their heads above the parapet.
We are grateful for additional resources made available by the Lloyds TSB Capacity Building Fund which has enabled us to formulate and produce the Business Development Plan 2009-2011. We wish to extend thanks to Jo Clifton and Karen Winning who assisted with funding matters and more recently, Garry Lees for his help with forthcoming marketing strategy.
Our funders are vital to the continuing success of Tourette Scotland and so we wish to reiterate our gratitude to all of the following for their support, especially donations of various amounts from many small organisations and individuals; unfortunately too numerous to name all of them here. Thanks to the Scottish Community Foundation we are exploring how we work with all age groups, and as a result we were able to engage further with adults and siblings ; this is demonstrated successfully at the activity weekends, where older members supported our young people. We will make a fuller evaluation of this project in Spring 2010.
Our main funding contributors include:
• Workload Financial Advisors - £10,000 in March 2009.
• Lloyds TSB Foundation
• Soutar Foundation
• Scottish Community Foundation, Intergenerational Fund
• Stafford Trust
• Children in Need
• Tesco
• Local Fundraisers - Golf Event 3rd year running at Craigie Hill, Perth
• Bingo Teas – held in Comrie to name but one.
I wish to conclude by expressing my gratitude once again to everyone, who in their various ways has contributed to the continued and growing success of Tourette Scotland as a leading authority and a valued support to everyone who lives with and experiences the challenge of Tourette Syndrome.
Olav Skretteberg
Chair - Tourette Scotland
27th October, 2009
Postscript: Development Manager Report
I have been involved as a volunteer with Tourette Scotland since 2002, through all our moves and changes, and, consequently, feel very much at home here!
Olav has outlined above his proposals for the year ahead, especially with regard to enabling better services, tailored training courses, and in securing income for the organisation.
My first duties have been to look at what is needed to carry out tasks for the Business Development Plan during 2009-2011, and what resources we need to carry out our aims and objectives. The key to this is writing funding bids to secure the long-term funding of our organisation.
As such, I have been researching and devising funding bids, looking at the marketing strategy, and working within the office team, Janice, Tony, Pat and Ruth, to devise a series of funding applications that I will bring to the committee at their next meeting. These include sustaining the core office team, money for the networks, and for developing a wider ranging training programme.
By increasing knowledge about Tourette Syndrome, and using our skills to overcome barriers that our members face in education, health and day to day life, we can build on our reputation as the foremost provider of services for those with TS.
I am looking forward to working with our Committee to take forward our plans for the future, and to meeting with more of our members throughout the next few months.
Judy Barrow