Getting support for children, young people and parents

Examples of Support

Finding out about, and telling others about, HD

Getting information and support when you need it (e.g. life in an HD family, education, career advice, being a young carer, living with a parent’s HD changes, emotional wellbeing & coping skills, inclusion, access to services, living with genetic risk & testing, family planning, loss and bereavement, being safe, fostering, adoption)

Key Services and People

Scottish Huntington’s Association Youth Project (SHAYP) / Specialist Youth Advisors

HD Specialists


Young carers services

Child & Adolescent Mental Health Services

Social Work – Children & Education Services

Clinical Genetics

Multi Disciplinary Teams /Allied Health Professional teams in the community

Social Care Services

HD Routes

Huntington’s Disease Youth Organisation (HDYO)

Integrated Multi Agency Arrangements, Referral Pathways and Resources

All young people living in a family with Huntington’s disease who need support should be offered a referral to an HD Specialist Youth Advisor  There is an open referral mechanism and young people, parents, health & social care professionals or family members may also make a referral.

Information about the Scottish Huntington’s Association Youth Service should be clearly identified on G.P. information services, such as SCI Gateway and/or local alternative

HD Specialist Youth Advisors will liaise appropriately with members of the multi-agency team.

Where parents or young people do not wish to be referred to Specialist Youth Advisors, information and advice may be provided by HD Specialists with the Youth Service providing support where required.

NB: All staff working have a responsibility to the protection and wellbeing of children and HD Specialists/ HD Specialist Youth Advisors in particular will participate in multi-agency working when required.


All enquiries to Scottish Huntington’s Association should have a response within 4 weeks.

All support is delivered within the GIRFEC framework and in accordance with the Children’s Act 2014 and the Curriculum for Excellence.


Children, young people, parents and their families have access to accurate information about HD, are well connected to support and services, feel less isolated and more able to cope with HD in their family.

National Care Framework for Huntington's Disease