Getting information and advice about HD and someone to support you

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 )

Lothian HD Service ( HD Clinical Lead , HD Specialists , Specialist Youth Advisor , Financial Wellbeing Officer )

Clinical Genetics

Lanfine Service ( Specialist Team for Adults with Progressive Neurological Conditions )

Speech & Language Therapy

Dietetics

Physiotherapy

Occupational Therapy  ( also see Edinburgh City ,  Midlothian, East Lothian , West Lothian )

Neuropsychology

Scottish Huntington’s Association

Advocacy

Podiatry

Mental Health Services ( Edinburgh City , Midlothian , East Lothian , West Lothian )

Social Work ( Edinburgh City , Midlothian , East Lothian , West Lothian )

NHS Inform ( Health Information Service )

HD Buzz ( Research information )

Health Literacy Place ( Assistance to understand information and choices )

Dental Services

GPs

Wheelchair & seating services

Hospice/ Palliative Care Services

Driving Assessment Service

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

G.P. information services RefHelp should clearly identify HD Specialists as main point of contact for information and advice about HD.

There are clear links with social work  ( Edinburgh City , Midlothian , East Lothian , West Lothian ) to provide assessment and care management

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

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.