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
HD Specialist Service ( HD Specialist, HD Clinical Lead, Specialist Youth Advisors, Financial Wellbeing Officer )
Neuropsychology
Mental Health Services ( Angus, Dundee City , Dundee East , Dundee West , Perth & Kinross )
Social Work ( Angus , Dundee City , Perth & Kinross )
NHS Inform ( Health Information Service )
HD Buzz ( Research information )
Health Literacy Place ( Assistance to understand information and choices )
General Dental Services (Specialist services at Dundee Dental Hospital & Broxden Dental Centre )
TORT Centre (Wheelchair, Seating, Assistive Technologies and Orthotics)
Palliative Care Services/ Hospices
Integrated Multi Agency Arrangements, Referral Pathways and Resources
Anyone can make a 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.
Clients with a new diagnosis of HD should be directed to the HD Road Map , where appropriate
SCI Gateway should clearly identify HD Specialists as main point of contact for information and advice about HD.
There are clear links with Social Work ( Angus , Dundee City , Perth & Kinross ) 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.