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
NHS Inform ( Health Information Service )
HD Buzz ( Research information )
Health Literacy Place ( Assistance to understand information and choices )
Integrated Multi Agency Arrangements, Referral Pathways and Resources
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.
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.