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

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

Spiritual needs of person/ family

Appropriate setting, in line with client choice

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. HD Clinical Lead & HD Specialists can refer to specialist community palliative care services who can provide required support for people with complex needs.

Hospice (see Dumfries & Galloway HSCP Palliative Care or Scottish Partnership for Palliative Care ) placements are available and there are good relations with HD Lead Clinician and HD Specialists allowing smooth referral.

GP 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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