Support to plan for the future

Examples of Support

Making advance directives

Anticipatory Care Plans



Power of Attorney

Funeral planning

Conflicting views

Cultural considerations

Choosing care placement

Organ Donation & Brain Donation


Financial planning

Key Services and People

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

Neuropsychology 01236 712 564 )


Health & Social Care Services, esp. Allied Health Professionals e.g. Speech & Language Therapy / Augmentative & Alternative Communication  , Dietetics ,  Occupational Therapy ( North Lanarkshire  ,  South Lanarkshire ) , Physiotherapy

Office of Public Guardian

Legal Services ( contact Citizens Advice , Scottish Huntington’s Association of Law Society of Scotland for initial for assistance )

Advocacy ( North LanarkshireSouth Lanarkshire )

HD Family & Friends ( HD Support Groups )

Psychiatry & Community Mental Health Team

Mental Health Officer ( North LanarkshireSouth Lanarkshire )

Hospice/ Palliative Care Services ( Also see: St Andrew’s Hospice , Strathcarron Hospice , Kilbryde Hospice , The Haven )

Care Homes ( All care homes , Care homes suitable for younger adults )

Integrated Multi Agency Arrangements, Referral Pathways and Resources

Where appropriate every symptomatic client should be offered a discussion about having an anticipatory care plan, with one being put in place based on individual need. This should be done by the most appropriate member of the multi-disciplinary team who will refer and liaise with the client’s GP. The HD Specialist will provide advice on who this should be.

HD Specialists  will provide advice on future planning and will complete the Scottish Huntington’s Association future planning documentation with all clients who wish it. Clients will be made aware of their options regarding legal frameworks, advance statements, values history statements.

With consent of client a GP should complete a Key Information Summary ( KIS ) entry.

Individual future plans should be revisited to the needs of the individual, as appropriate, and to a minimum of once per year.

Out of hours clinical staff should ensure there is an anticipatory care plan and/or mental health advance statement, and clear plans are in place to ensure this can be accessed.


Advice and support is consistent with Royal College of Nursing and General Medical Guidance on conducting future care conversations and in line with Mental Health ( Care & Treatment ) ( Scotland ) Act 2003


Also see Standards of service used (e.g. Office of Public Guardian, Palliative Care Standards, H&SC Standards, Scot Gov/ SIGN standards)


People living with HD and their families feel empowered and are more confident that appropriate plans are in place to ensure their future wishes are respected and that their future care needs have been anticipated.

National Care Framework for Huntington's Disease