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
Scottish Huntington’s Association Financial Wellbeing Service
Scottish Huntington’s Association Youth Project (SHAYP) / Specialist Youth Advisors / Scottish Huntington’s Association
Advocacy Services ( Highland , Argyll & Bute )
Clinical psychology/Neuropsychology (through referral from GP or HD Clinical Lead )
Dietetics ( Highland , Argyll & Bute )
Mental Health Services (through referral from GP or HD Clinical Lead )
Occupational Therapy ( Highland , Argyll & Bute )
Social Work ( Highland , Argyll & Bute )
Wheelchair & Specialist Seating Services ( Highland , Argyll & Bute )
Integrated Multi Agency Arrangements, Referral Pathways and Resources
Any staff or family member may refer 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 / TRAKCare, should clearly identify HD Specialists as main point of contact for information and advice about HD.
There are clear links with social work to provide assessment and care management
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.