Support to plan for the future
Examples of Support
Making advance directives
Anticipatory Care Plans
Wills
Guardianship
Power of Attorney
Funeral planning
Conflicting views
Cultural considerations
Choosing care placement
Organ Donation & Brain Donation
Childcare
Financial planning
Key Services and People
Scottish Huntington’s Association Youth Project (SHAYP)/Specialist Youth Advisors
Clinical psychology/neuropsychology
Health & Social Care Services, esp. Allied Health Professionals (e.g. Speech & Language Therapist, Dietician, Occupational Therapist, Physiotherapist)
Scottish Huntington’s Association Financial Wellbeing Service
Legal Services (contact Citizen’s Advice, Scottish Huntington’s Association or Law Society of Scotland for initial for assistance)
Advocacy
HD Family & Friends (HD Support Groups)
Psychiatry & Community Mental Health Team
Mental Health Officer
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 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.