Getting support with day-to-day living and reducing isolation
Examples of Support
Social Work – Children’s Services
Support from family & friends
Local community groups & organisations
Reducing isolation
Disease progression
Loss/ bereavement
Relationships
Social isolation
Dealing with prejudice & stigma
Coping strategies
Spiritual needs
Specialist clothing (e.g. Limon Attire)
Financial worries
Impact of behavioural changes on wider family
Dealing with feelings of guilt
Concerns about suicide or feeling suicidal
Pressures of being a caregiver
Worries about the future
Key Services and People
Scottish Huntington’s Association Youth Project (SHAYP)/Specialist Youth Advisors
Health & Community Care Services (North Ayrshire HSCP, South Ayrshire HSCP, East Ayrshire HSCP)
Appropriate recreational & leisure opportunities (see Capability Scotland & Focus on Disability)
HD Support Groups
Advocacy services (e.g. Aims Advocacy (North Ayrshire), Circles Network (South Ayrshire), East Ayrshire Advocacy Service, Barnardo’s, Who Cares? Scotland)
Specialist clothing (e.g. Limon Attire)
Children’s Services, including third sector (e.g. Childline, Barnardo’s, Children 1st, NSPCC, Action for Children, Breathing Space)
Family Services, including third sector (e.g. Turning Point, Breathing Space, Richmond Fellowship, Parentline)
Carer Support Services (e.g. Carers Trust, Carers Scotland, Shared Care Scotland, Care Information Scotland)
Faith based organisations (see Chaplaincy Services, Ayrshire Interfaith Forum)
Speech & Language Therapy
Integrated Multi Agency Arrangements, Referral Pathways and Resources
Standards
Individuals should have support to be part of their local community in line with Health & Social Care Standards.
Police to keep people with HD on Vulnerable Adults Database, where appropriate.
Fire Brigade to offer risk assessment to all people with HD, where appropriate.
Health & Social Care Partnerships to provide an allocated worker to link with specialist team for all HD clients, where appropriate.