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 Service / Specialist Youth Advisors
School Guidance Teachers/Pastoral Care Workers (North Ayrshire, South Ayrshire, East Ayrshire)
Young carers services (Care & Support North Ayrshire/North Ayrshire Council (Carers), South Ayrshire Council (Carers), South Ayrshire Carers Centre, Crossroads, East Ayrshire Carers Centre, East Ayrshire Carers Centre Young Carers Group)
Child & Adolescent Mental Health Services
Social Work – Children & Education Services (North Ayrshire, South Ayrshire, East Ayrshire)
Multi Disciplinary Teams/Allied Health Professional teams in the community (Speech & Language Therapy, Dietetics, Physiotherapy, Occupation Therapy)
Social Care Services (Adults) (North Ayrshire, South Ayrshire, East Ayrshire)
HD Routes
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 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.
Standards
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.