Support to plan for the future
Examples of Support
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
HD Family & Friends ( HD Support Groups )
Psychiatry & Community Mental Health Team
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.