Links to further information
The following are links to some sites which may be useful if you are searching for information on Palliative Care.
Resources to support good palliative and end of life care
- Scottish Government Guidance on caring for people in the last days and hours of life: Guidance: Caring for People in the last days and hours of life
- Future Care Planning: The Scottish Government and Healthcare Improvement Scotland have published information about Future Care Planning, which is available here: Future Care Planning Toolkit
- The Supportive and Palliative Care Action Register (SPAR)
- The Key Information Summary.
- Recommended Summary Plan for Emergency Care and Treatment (ReSPECT), a UK-wide initiative to support Future Care Planning (FCP) and the FCP process.
- The Good Life, Good Death, Good Grief initiative has a website providing links to further information, resources and support for professionals, carers and anyone directly affected by death, dying and bereavement.
- The Supportive and Palliative Care Indicators Tool (SPICT)
- The Scottish Palliative Care Guidelines
- Information about Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) policy for adults: for staff; for members of the public
- General Medical Council guidance: Treatment and care towards the end of life: good practice in decision making.
- Royal College of General Practitioners: Palliative and end of life care toolkit.
- Macmillan Cancer Support: Best practice in palliative and end of life care for cancer
Available data and evidence
- The Marie Curie End of Life Care Atlas is designed to provide insights into care provision in local areas.
- The Nuffield Trust are running several projects looking at patterns of care at the end of life.
Measurement and Impact
- NHS Healthcare Improvement Scotland (HIS) has published a set of Palliative Care Indicators.
- A Joint Improvement Team Webex on palliative and end of life care explores evidencing impact.
Education and Information
- The NHS Education Scotland TURAS website includes resources relating to palliative and end of life care.
- NHS Education Scotland has published: Palliative and end of life care: enriching and improving experience, a framework to support the learning and development needs of the health and social service workforce in Scotland
- End of life care for all (e-ELCA) was developed in England but is available to NHSScotland staff, and aims to enhance the training and education of health and social care staff involved in delivering end of life care.
- The Scottish Partnership for Palliative Care produces a monthly e-bulletin providing up-to-date information about policy, practice, education, research and news relating to palliative care in Scotland.
- The NHS Greater Glasgow and Clyde Managed Clinical Network website provides palliative care information for professionals.
- NHS Education Scotland Resources for Professionals on Bereavement – Support Around Death
Palliative Care in Care Homes
- Relevant resources on palliative care for those working in Care Homes have been signposted on the Pearl Trees website.
- Making Good Care Better, national practice statements for general palliative care in adult care homes in Scotland.
Also relating to palliative care in care homes, the following resources were published by the English National End of Life Care Programme, and provide some information and background:
- Supporting people to live and die well: A framework for social care at the end of life
- The route to success in end of life care – achieving quality for social work
- End of Life Care in extra care housing - a practical toolkit for managers and care and support workers in extra care housing schemes illustrating how extra care housing staff can talk about end of life care with residents and work to ensure their wishes and preferences are met.
The Association of Palliative Care Social Workers (APCSW) website outlines the role of a palliative care social worker.
Policy Context
- Scottish Government web pages on Illness and Long-term Conditions
- Strategic Framework for Action for Palliative and End of Life Care
- Living and Dying Well, a national action plan for palliative and end of life care in Scotland
- Living and Dying Well, building on progress
- Good Life, Good Death, Good Grief is an alliance of individuals and organisations who believe that Scotland should be a place where people can be open about death, dying and bereavement. The Good Life, Good Death, Good Grief websiteexplains the rationale for ‘health promoting palliative care’ – the need for more openness about death, dying and bereavement.
Children and young people
- ACT
- Children and Teenagers Scottish Cancer Network (CATSCAN)
- Children and Young Persons Acute Deterioration Management (CYPADM)
- Children’s Hospice Association Scotland (CHAS)
- CLIC Sargent
- Managed Knowledge Network: palliative care of children and young people in Scotland
- Babies,Children & Young People’s Palliative Care Community of Practice
- REACT - charity working to improve quality of life for children with life-limiting illnesses living in financially disadvantaged households
- Together for short lives
- Winston’s Wish
Information, support and networking for patients and carers
- Patient information about drugs used within palliative care
- Alzheimer Scotland – Action on Dementia
- Beatson West of Scotland Cancer Centre
- Breast Cancer Now
- British Association for Counselling and Psychotherapy
- British Heart Foundation Scotland
- British Lung Foundation Scotland
- Chest, Heart and Stroke Scotland
- Cruse Scotland Bereavement Support
- Dementia Services Development Centre, University of Stirling
- Good Life, Good Death, Good Grief
- Health and Social Care Alliance Scotland
- Macmillan Cancer Support
- Maggie’s Cancer Caring Centres
- Marie Curie
- MND Scotland
- Multiple Sclerosis Society Scotland
- NHS Inform Palliative Care Zone
- North of Scotland Cancer Network
- Pain Association Scotland
- Pancreatic Cancer UK
- Parkinson’s UK
- Roy Castle Lung Foundation
- Scottish Huntington’s Association
- Scottish Kidney Federation
- Solicitors for Older People in Scotland (SOPS)
- South East Scotland Cancer Network
- Sue Ryder Care
- To Absent Friends: a people’s festival of storytelling and remembrance
- Widowed and Young
Information, support and networking for professionals
- British Heart Foundation Scotland
- Child Bereavement Charity
- Dementia Services Development Centre, University of Stirling
- Do Not Attempt Cardiopulmonary Resuscitation: (DNACPR) Integrated Adult Policy
- Good Life, Good Death, Good Grief
- Hospice Information
- Long Term Conditions Alliance Scotland (The ALLIANCE)
- Marie Curie
- The National Council for Palliative Care
- North of Scotland Cancer Network
- Pain Talk
- Palliative Care on the NES Managed Knowledge Network
- Palliative Care Greater Glasgow and Clyde
- Parkinson’s Disease Society
- Resuscitation Planning Policy for Children and Young People (under 16 years)
- Royal College of General Practioners
- South East Scotland Cancer Network
- WHO Pain and Palliative Care Communications Program
Professional Associations
- The Association for Palliative Medicine of Great Britain and Ireland (APM)
- Association of Bereavement Service Co-ordinators
- Association of Hospice & Palliative Care Chaplains
- Association of Palliative Care Social Workers
- European Association for Palliative Care
- RCN Palliative Nursing Group
- Scottish Palliative Care Pharmacists Association
Related National Workstreams
- Scottish Patient Safety Programe
- Living and Dying Well - A National Action Plan for Palliative and End of Life Care
- Living and Dying Well Building on Progress
- Long-Term Conditions Collaborative Programme
- Reshaping Care for Older People
- Shifting the Balance of Care
Research
- Cancer Care Research Centre, University of Stirling
- Cancer Research UK
- Centre for Public Health Sciences
- Edinburgh Cancer Research Centre
- National End of Life Care Intelligence Network
- Queen’s Nursing Institute for Scotland (QNIS)
- University of Glasgow Centre for Oncology and Applied Pharmacology
- The Compass Collaborative
- The Cancer Experience Collaborative
Standards, Guidelines and Regulation
- Healthcare Improvement Scotland (HIS)
- National Care Standards
- Scottish Intercollegiate Guideline Network (SIGN)
