Moving to supported accommodation and long term care

Examples of Support

Making advance directives

Anticipatory Care Plans (including conflicting views)

Wills

Guardianship

Power of Attorney (Putting in place legal measures to help plan for the future)

Funeral planning

Cultural considerations

Choosing care placement

Organ Donation & Brain Donation

Childcare

Financial planning

Key Services and People

HD Specialists

HD Clinical Lead

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

Advocacy Services ( Highland , Argyll & Bute )

Clinical psychology/Neuropsychology (through referral from GP or HD Clinical Lead )

GPs

Health & Social Care Services, esp. Allied Health Professionals e.g.  Speech & Language Therapy re PEG feeding, Occupational Therapy ( Highland , Argyll & Bute ), Dietetics ( Highland , Argyll & Bute ) , Physiotherapy

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

Office of Public Guardian

Palliative Care Services

Psychiatry & Community Mental Health Team/ Mental Health Officer ( Highland , Argyll & Bute )

Scottish Huntington’s Association Financial Wellbeing Service

Integrated Multi Agency Arrangements, Referral Pathways and Resources

HD Specialists provide the lead 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.

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. HD Specialists will refer and liaise with the client’s GP

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

Individual future plans should be revisited as part of an annual review of care and support.

Standards

Advice and support is consistent with Royal College of Nursing and General Medical Council 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)

Outcomes

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

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