‘Families at the heart of all that we do’
Huntington’s Disease Association Northern Ireland Strategy 2010 – 2015
About Huntington’s Disease Huntington’s Disease is a degenerative neurological disorder causing cognitive impairment and severe physical incapacity. It affects both male and female alike and usually in the prime of mid-life. Normally, the duration of the illness is 10-15 years. Available information in Northern Ireland indicates approximately 200 individuals at any one time are affected by the disease, but for every one person with the illness there are four people at risk from developing it. However this is likely to be a gross underestimation. Recent research by Professor Sir Michael Rawlins published in the medical journal ‘The Lancet’ (June 2010) concluded that in the UK there is a significant underestimation of the prevalence of Huntington’s Disease and it is now accepted that the incidence is at least double the previous estimates. According to Professor Rawlins, one of the major factors in this under-reporting is the stigma that traditionally attaches to this disease. The consequences of Huntington’s disease are numerous and daunting. Huntington’s is not an ‘individual’ illness. It affects the whole family. It is hereditary and each child of an affected parent has a 50% risk of developing the disease. Frequently, there is more than one person with Huntington’s Disease in the family needing 24 hour care. This round the clock nursing can take as much as 40 years of a carers life, nursing a spouse and then one or more children. This often leads to isolation, helplessness, guilt, stress and fatigue. As yet, there is no cure.
The Amaryllis The ‘Amaryllis’, the international symbol of Huntington’s Disease, represents a double image of a head and shoulders as the flower of a growing and vibrant plant. The reduced size of the head of the inner plant and shoulders image symbolises the diminution in a person caused by Huntington’s Disease. The leaves represent the protection, purpose, growth and development of the Huntington’s community worldwide in its search for a cure and treatment.
Foreword I am proud to be the Patron of the Huntington’s Disease Association Northern Ireland, and admire the courage, determination, and leadership shown by the Association and its members, all “ordinary” people, in tackling the immense challenges posed by Huntington’s Disease, day in and day out. In getting together and working to produce this Strategy, I believe The Huntington’s Disease Association Northern Ireland has demonstrated initiative and pragmatism. It isn’t enough to simply wish for improvements. If there is to be change, it has to be planned; priorities have to be decided and efforts have to be focused. The Association’s members have worked hard over the past months to produce their Strategy, and I am sure those efforts will prove to be worthwhile. The focus on local support groups, and on the essential social support network that is so important to all those affected by Huntington’s Disease, is a wise one. So is the decision to connect with and support research efforts to combat the disease. It is through such scientific efforts and the better understanding that a cure may be found, and that in the meantime, day-to-day treatments can be improved. Individuals with Huntington’s Disease can make a vital contribution to this work, and I am sure that the Association’s work will provide the essential link with such researchers. I am convinced that there is wisdom too in the focus on strengthening the voice of the Huntington’s community; and in increasing awareness and understanding in the political arena as well as in the medical and social care professions. Now that money is so tight, and hard decisions are being taken on public services, a strong voice for the vulnerable is essential. So I am particularly glad to support your efforts in producing this first Strategy, and making the UK and Ireland Huntington’s Alliance a reality, and working in partnership with other neurological charities here in Northern Ireland to improve the voice of all those affected by Huntington’s Disease and other neurological conditions. I look forward to seeing the results flowing from this work. Baroness May Blood MBE (Patron)
Introduction It gives me a feeling of great pride to write this, the introduction to our first Strategy. When I look back to the beginnings of our Association in 1985, and reflect on all that has happened since then, it feels almost like a dream. A nightmare, with much suffering and the loss of so many dear ones, but also such great progress in understanding and awareness of Huntington’s Disease, and with medical advances bringing the prospect of better medications, better treatments, and even we hope a cure. And such great progress too, in the Association itself. From a position where people affected by Huntington’s Disease in Northern Ireland were literally “on their own” to the point where today we have not only our own Association here in Northern Ireland, but links to strong and growing sister organisations in Scotland, England and Wales and Ireland; and links with organisations across the world. We have our support line; we have 4 regional support groups; and we have a growing group of interested professionals. Our Annual Conference is a valuable and valued opportunity for all our members to meet and hear at first hand the latest news from a variety of experts, as well as to enjoy some good cheer and companionship. Some of our young people have benefited greatly from attending summer camps in Scotland, and individuals or groups attend events in Ireland, England and further afield. We are now incorporated as a company limited by guarantee with a Board, and we are well placed to register with the new Northern Ireland Charity Commission when the requirement to do so comes into force. But simply patting ourselves on the back isn’t enough. We see the continuing devastation which Huntington’s Disease causes; we learn that there is a serious underestimate of the numbers of people affected; and we are determined to up our game, to make even more of an impact in the interests of our members, and of all those affected by Huntington’s Disease. To do this, to work towards our Vision of Huntington’s Disease Families remaining active, involved, connected, valued and supported, and leading as independent and normal a life as possible, we must become more effective, and better organised. We must make sure we get the best results out of all our efforts. We have worked hard, involving our members, to draw together this Strategy. It describes how we will work over the next 5 years to deliver our Mission To sustain a high quality of life for existing sufferers and their families and to work with others to find a cure for Huntington’s Disease. It is going to be the basis for all that we do; for the requests we make for funding and for support; and for the work on raising awareness and understanding of Huntington’s Disease in the community, among the medical and social care professionals, and amongst politicians. I am passionate about the need for us to continue working to improve the lives of all those affected by Huntington’s Disease. We have made tremendous progress; we have consolidated that progress; and this Strategy sets out how we will build on those foundations over the next five years, which we know will be times of unprecedented financial difficulty. We all have so much at stake; we have built this strategy; and I know we will make it work. Pat McKay (Chair)
Strategic Planning Process This Strategy was developed through the commitment and hard work of Association members who participated in a number of interactive workshops. They talked with honesty and openness about the current reality and impact of living with Huntington’s Disease and about their dreams of what the future could look like and what needs to be done to make this happen. From these workshops a wide range of ideas was generated and recorded. In a further workshop members reviewed all of the information gathered and grouped this into key themes and agreed priority areas. This process produced the headline 5 strategic themes along with their strategic objectives. Following a period of redrafting and further consultation the Strategy was agreed and signed off by the members of the Association. A sincere thanks goes to all the contributors.
Mission Statement Huntington’s Disease Association Northern Ireland’s mission is
to sustain a high quality of life for sufferers and their families and to work with others to find a cure for Huntington’s Disease.
Vision Statement Huntington’s Disease Association Northern Ireland’s vision is
for Huntington’s Disease families to remain active, involved, connected, valued and supported and leading as independent and normal a life as possible.
Strategic theme one
connecting families To develop social activities and opportunities to reduce isolation and ensure families remain connected, supported, informed and active within communities.
Strategic objectives 1. To grow the number of Support Groups, increasing social opportunities to connect Huntington’s Disease families to each other.
2. To explore and develop peer advice and support and direct to appropriate services.
3. To explore and develop youth education and peer support programmes.
4. To develop the annual conference into a key calendar event of the Association.
5. To grow the small grants programme, focussing on supporting social activities and families experiencing hardship.
Strategic theme two
building a strong voice To harness the experience and expertise of Huntington’s Disease families to become a strong and authoritative advocate, campaigning for appropriate legislation and support services.
Strategic objectives 6. To significantly raise public awareness and understanding of Huntington’s Disease and its impact on individuals, carers and families.
7. To campaign for excellence in care, respite and support services.
8. To campaign and advocate wherever Huntington’s Disease families experience discrimination.
9. To advocate on behalf of our membership through partnerships
Strategic theme three
improving professional support To raise awareness among professionals to improve understanding of Huntington’s Disease, its impact and the complexity of treatment, care and supports required.
Strategic objectives
10. To develop and deliver appropriate educational training programmes.
11. To develop the website as a key and trusted resource.
12. To increase access to information, knowledge and support for Huntington’s Disease families.
Strategic theme four
finding a cure To work with researchers to find a cure for Huntington’s Disease.
Strategic objectives 13. To work with partner organisation especially in Europe, England/Wales, Scotland and Ireland to encourage and support research and use of new scientific and medical advances.
Strategic theme five
developing the Association To develop the staff team, systems and resources to ensure continuous improvement and development of the Huntington’s Disease Association Northern Ireland.
Strategic objectives 14. To grow the membership of the Association to increase opportunities to educate, connect and support Huntington’s Disease families. 15. To generate a diverse income base to sustain the development of the Association and its strategic intentions. 16. To continuously promote the work of Huntington’s Disease Association Northern Ireland.
Contact Details Huntington’s Disease Association Northern Ireland 74 Lisburn Square Lisburn, BT28 1TS T: (028) 21771812 E: info@hdani.org.uk W: www.hdani.org.uk
Huntington’s Disease Association Northern Ireland is a company limited by guarantee registered in Northern Ireland and recognised as a charity by HM Revenue and Custom: registered office address, 74 Lisburn Square, Lisburn, BT28 1TS. Company number NI074057, HMRC Charity reference number XT14084.
Huntington’s Disease Association Northern Ireland