Support to plan for the future
Examples of Support
Making advance directives
Anticipatory Care Planning (including conflicting views)
Wills
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 such as Speech & Language Therapy (re decisions about PEG feeding), Dietetics, Physiotherapy, Occupational Therapy ( 03451 55 15 03 or sw.contactctr@fife.gov.uk )
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
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
Also see Standards of service used (e.g. Office of Public Guardian, Palliative Care Standards, H&SC Standards, Scot Gov/ SIGN standards)