Getting information and advice about HD and someone to support you
Examples of Support
Signposting to trusted sources and provision of information and support (e.g. career planning, employment issues, carer support, finances, welfare rights, insurance, planning ahead, power of attorney, living wills, wills and testaments, keeping healthy, research, condition specific information, driving, housing)
Key Services and People
Clinical psychology/neuropsychology
Scottish Huntington’s Association
Scottish Huntington’s Association Youth Project (SHAYP)/Specialist Youth Advisors
Advocacy Services (e.g. Aims Advocacy (North Ayrshire), Circles Network (South Ayrshire), East Ayrshire Advocacy Service, Barnardo’s, Who Cares? Scotland)
Social Work (North Ayrshire, South Ayrshire, East Ayrshire)
Integrated Multi Agency Arrangements, Referral Pathways and Resources
Open referral to HD Specialists or Specialist Youth Advisors
All clients should be provided with a referral pack appropriate to their needs, including a service leaflet detailing available specialist support
All clients with a new diagnosis of HD should be directed to the HD Road Map
G.P. information services, such as SCI Gateway and/or local alternative, should clearly identify HD Specialists as main point of contact for information and advice about HD.
North Ayrshire, South Ayrshire and East Ayrshire Social Work departments have close links with mental health teams.
Standards
A summary letter should be provided to GP and client within one month of completion of assessment
Every client should have a named HD Specialist
Referral to individual service standards
Outcomes
People living with HD and their families are provided with timely and accurate information about their condition and the choices, services and support available to them.