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
School Guidance Teachers/ Pastoral Care Workers
Multi-Disciplinary Teams esp. Allied Health Professionals e.g. Speech & Language Therapy, Physiotherapy, Occupational Therapy ( also see Edinburgh City , Midlothian, East Lothian , West Lothian ), Dietetics
HD Routes ( interactive resource for young people )
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 RefHelp
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.
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.