Getting support for children, young people and parents
Examples of Support
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
School Guidance Teachers/ Pastoral Care Workers
Young carer & young adult carers’ services ( Lothian, Edinburgh City , Midlothian , East Lothian , West Lothian , Children First , Carers Trust )
Child & Adolescent Mental Health Services ( CAMHS )
Social Work – Children’s Services ( Edinburgh City , Midlothian , East Lothian , West Lothian )
Clinical Genetics
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
Social Care Services ( Adults ) ( Edinburgh City , Midlothian , East Lothian , West Lothian )
HD Routes ( interactive resource for young people )
Huntington’s Disease Youth Organisation ( HDYO )
Scottish Huntington’s Association Carers’ Forum
Integrated Multi Agency Arrangements, Referral Pathways and Resources
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.
Standards
All support is delivered within the GIRFEC framework and in accordance with the Children’s Act 2014, the Curriculum for Excellence and