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 Specialists

HD Clinical Lead

Clinical Genetics

Speech & Language Therapy

Dietetics

Physiotherapy

Occupational Therapy

Clinical psychology/ neuropsychology

Scottish Huntington’s Association

Scottish Huntington’s Association Youth Project (SHAYP) / Specialist Youth Advisors

Advocacy

Podiatry

Mental Health Services

Social Work

NHS Choices

HD Buzz

Health Literacy Place

Dental Services

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.

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.

 

National Care Framework for Huntington's Disease