Support to plan for the future
Examples of Support
Anticipatory Care Plans ( including conflicting views )
Wills
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
Lothian HD Service ( HD Clinical Lead , HD Specialists , Specialist Youth Advisor , Financial Wellbeing Officer )
Health & Social Care Services, esp. Allied Health Professionals e.g. Speech & Language Therapy, Physiotherapy, Occupational Therapy ( also see Edinburgh City , Midlothian, East Lothian , West Lothian ), Dietetics
Carer Support Services ( Lanfine Service , Vocal ( Edinburgh City & Midlothian ) , Carers of East Lothian , Carers of West Lothian , Carers Trust , Carers Scotland , Shared Care Scotland , Care Information Scotland )
Legal Services ( contact Citizens Advice , Scottish Huntington’s Association or Law Society of Scotland for initial for assistance )
HD Family & Friends ( HD Support Groups )
Community Mental Health Team / Mental Health Officer ( Edinburgh City , Midlothian , East Lothian , West Lothian )
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.