HD Routes - advising young people touched by HD
Huntington's disease is a devastating genetic disorder that causes profound physical disability, deterioration in cognitive function and severe mental ill-health. HD Routes is an interactive resource for all young people facing the significant challenges that are created by living in a HD family.
January 2017 - December 2022
Scottish Huntington's Association
Children living in a family affected by HD experience many challenges. 70% of relationships break down under the pressures of living with HD and many young people will experience separation from a parent or siblings. As the health of their resident parent becomes worse 80% of the young people we work with have to take on significant caring responsibilities. In addition everyone who has a parent with HD has a 50% chance of developing the condition themselves. The psychological strain is immense.
We worked with young people to produce the resource with their views at the centre of HD Routes. Packed with dozens of games and activities, HD Routes not only helps young people learn more about HD, but teaches them new ways to cope with the significant challenges that are created by living in a HD family.
Living in an HD family can be very confusing. This resource enables young people to access accurate and trustworthy HD information that is written in simple, easy to understand language.
Addressing lack of accurate information and resources which lead to misconceptions about HD
Activities» By providing a consistent and reliable point of contact and accurate information, the resource means young people are better equipped to cope.
Using the same channels we use to evaluate our youth service, we will ask for informal feedback from young people and more structured feedback from professionals and parents.
Dealing with stigma and discriminatio attached to HD.
Activities» The resource aims to highlight how to challenge negative and stereotypical images associated with HD.
We will evaluate on these outcomes through the channels we use to evaluate our youth service. We evaluate our youth service on a continuous basis.
To help families to talk openly about HD due to the stigma associated with the disease.
Activities» The resource can be used to coach parents about communicating with children and young people, helping families reduce barriers between them.
We evaluate our youth service through the Getting it Right for Every Child framework. We also evaluate against the National Curriculum for Excellence.
Coping with a caring role
Activities» The resources provides support and reassurance about the disease and advice on how to deal with difficult issues, from within a caring role.
Young people will be asked to complete an evaluation following one-to-one and group sessions over the course of the year and this will be compiled into a report.
Addressing the social disadvantage and poverty faced by young people affected by HD.
Activities» This resource aims to address the issues that lead to young people from HD families dropping out of education or struggling with employment.
We will also ask for feedback from parents and professionals.
Once this project is funded we will produce 250 copies of HD Routes, as well as promoting it online, which would provide us with a resource that could last potentially for at least the next five years.
We currently receive approximately 25-30 referrals of young people to the service, 80% of which will require long term support. We also support 170 young people across Scotland. We will continue to work with these young people, receiving ongoing feedback, to make this the resource they need.
In order for the project to go ahead we need to raise £6,000 to produce the additional three chapters of HD Routes. This cost includes the design and illustrations and printing of 250 copies.
If we cannot raise the full amount, the project cannot go ahead. However, we are actively seeking funds from a wide range of sources, including charitable trusts and our individual giving and community fundraising programmes. This diversity means we avoid becoming too dependent on any single source.
The project has been evaluated so far via informal feedback at one-to-one and group sessions with our young people, and after presentations and round table meetings with professionals. These will continue. We will also continue to update donors through optional regular email updates.
Budget - Project Cost: £6,000Loading graph....
Amount Heading Description £2,600 Design Producing the designs and illustrations for the project. £1,400 Binders (printing) Binding the additional 250 copies £2,000 Printing (inserts) Printing the additional 250 copies
This project will benefit young people across Scotland, and potentially further, as the online resource could be distributed to young people across the world.
Scottish Huntington's Association Youth Project is currently recognized as a world leader in this field and this is a UK first – no other organisation has developed such specialized information about the condition specifically for young people.
We believe there are currently potentially 5000 young people in Scotland at high genetic risk of inheriting the gene which causes HD. At the moment we are only able to work with 170 young people across Scotland, with 25-30 new referrals bringing more and more young people to us each year, 80% of which will need long term support from our youth service to help them access education or employment, and cope with their caring responsibilities.
We are currently the only charity in Scotland dedicated to working with families affected by Huntington's disease (HD).
SHAYP Life – Scottish Huntington’s Association Youth Service was established in 2001 and has been identified as being the most advanced in the world. “The only country to have a comprehensive care is Scotland where it has activities for ages 7-25 years” (Carina Hvalstedt, “Who cares about me?”, 2008)
Read more about the Charity running this project.
Kirsten Walker is the guiding light behind HD Routes; she's a youth worker and counselling psychologist who has worked with SHAYP since 2008.