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 Clinic

HD Specialists

HD Clinical Lead

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

Care Homes (refer to HD Specialist for guidance on which homes have recent experience of working with HD Families).

Clinical psychology/Neuropsychology (through referral from GP or HD Clinical Lead )

Community Nursing (via GPs )

Dental Services

Dietetics ( Highland , Argyll & Bute )

Faith based organisations ( see Highland Chaplaincy Services  , Argyll & Bute Chaplaincy Services , Interfaith Scotland  )


Hospice/ Palliative Care Services

Occupational Therapy ( Highland , Argyll & Bute )

Pharmacy ( Highland , Argyll & Bute )


Speech & Language Therapy

Wheelchair & Specialist Seating Services ( HighlandArgyll & Bute )

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 services 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.


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