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 and distress

Recognising and addressing depression/anxiety

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

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

Spiritual needs of person/ family

Appropriate setting in line with client choice

Key Services and People

HD Specialists

HD Clinical Lead/HD Clinic

Scottish Huntington’s Association Youth Project (SHAYP)/Specialist Youth Advisors

Hospice/Palliative Care Services

Hospice Services

Care Homes

GPs

Dental Services

Speech & Language Therapy (Aberdeen City & Aberdeenshire, Moray)

Dietetics (01224 557318)

Physiotherapy

Occupational Therapy (Aberdeen City, Aberdeenshire, Moray)

Clinical psychology/ neuropsychology

Community Nursing

Faith based organisations (see Grampian Chaplaincy Services, Interfaith Aberdeen and Interfaith Moray)

Pharmacy (Aberdeen City, Aberdeenshire, Moray)

Wheelchair & specialist seating services

GATE Project (Good At The End)

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 placements 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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