The Scottish Huntington's Association identified a gap in service provision for young people growing up in families affected by Huntington's Disease. Historically the needs of the person affected by HD were cared for, however children and young people growing up in families affected by HD also required specialised support which the adult advisors could not offer. The SHA therefore developed a post for a Youth Advisor to support young people. Initially there was one worker employed by the SHA to cover all of Scotland. This has now increased to two workers. 

The SHA’s Youth Service works with children and young people aged 8-25 living in families with HD throughout Scotland. The service has four main aims:

1. To increase children and young people’s knowledge and awareness of HD.
2. To provide one-to-one/group support for children and young people living in a family with HD.  
3. To improve parent’s abilities to communicate with their children about HD.
4. To improve professional awareness of the impact of HD on children and young people.

Often young people living in a family with HD can feel: -

Isolated

Scared

Unable to talk to anyone about HD

Angry

Embarrassed

Confused

Stressed

Worried

Not have any information

Alone

And are often young carer’s  

Information

Advice

1-2-1 sessions

Group sessions

Befriending

Fun Activities e.g. summer camps, days out

Someone to listen to you

Advocacy

Counselling

Chatroom

Bebo page

Newsletter

Website

Provide parents with accurate age appropriate information

Support parents in telling children

Encourage open accurate communication in families

Raise awareness with professionals

Provide training to professionals