Care at the end of life

Examples of Support

Advanced symptom management

Anticipatory care planning

Reviewing living wills

Managing risks around swallowing and maintaining good nutrition

Managing oral health

Maintaining communication

Recognising and addressing pain

Recognising and addressing depression/anxiety

Assessment for specialist equipment ( e.g. seating, wheelchairs )

Ensuring emotional support for families & recognising their expert knowledge of the client

Spiritual needs of person/ family

Key Services and People

HD Clinic ( HD Clinical Lead, HD Specialists, Specialist Youth Advisor, Financial Wellbeing Officer )

Hospice/ Palliative Care Services ( Also see: St Andrew’s Hospice , Strathcarron Hospice , Kilbryde Hospice , The HavenSpecialist Palliative Care Nurses & Teams )

Care Homes ( All care homes , Care homes suitable for younger adults )

GPs

Dental Services

Speech & Language Therapy / Augmentative & Alternative Communication

Dietetics

Physiotherapy

Occupational Therapy ( North Lanarkshire  ,  South Lanarkshire )

Neuropsychology 01236 712 564 )

Community Nursing ( via GP )

Faith based organisations ( see  Chaplaincy Services or  Interfaith Forum )

Moving and Handling Team

Community Mental Health Teams ( North Lanarkshire , South Lanarkshire )

Wheelchair & Seating Services

Integrated Multi Agency Arrangements, Referral Pathways and Resources

There are clear links to specialist community palliative care services who can provide input and advice when required for people with HD who have complex needs.

Hospice ( Also see: St Andrew’s Hospice , Strathcarron Hospice , Kilbryde Hospice , The HavenSpecialist Palliative Care Nurses & Teams ) placements and Hospital at Home are available and there are clear criteria for referral.

GPs are aware and involved in end of life care and act as the Responsible Medical Officer when appropriate.

Relevant faith organisations are involved, in line with client’s belief system and with their consent

GP to ensure that the Key Information Summary (KIS) is updated following any significant change or clinical deterioration to enable relevant clinical information to be shared with health professionals providing care during the out of hours period.

Outcomes

People with symptoms of HD and their families receive good health and social care support that promotes their physical and emotional wellbeing throughout life

National Care Framework for Huntington's Disease

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