Palliative Care Matters for All: palliative care strategy - initial delivery plan 2025-2028

Delivery Plan Action Groups

Action Group 1: Enabling Communities

Why does this need to change?

• People say information about palliative care is not accessible and relevant for everyone with life shortening conditions from diagnosis or as their health is changing.
• Talking openly about living with life shortening conditions, death, dying and bereavement helps people to give and receive support from others, but people and communities choose to do this in different ways.
• Local communities and networks that support people of all ages with life shortening conditions and their families and carers need to be recognised, valued and included in local planning of whole system approaches to palliative care.

Action 1.1: Public information – Provide and promote inclusive, accessible public information for people of all ages, their families and carers about living with life shortening conditions, death, dying and bereavement with links to organisations offering more information and support.

Action 1.2: Living and dying well in communities – Support initiatives and community-led networks that promote conversations about living with life shortening conditions, dying, death and bereavement, so people of all ages and their communities are supported to help themselves and each other.

Action 1.3: Bereavement support – Publish and promote an updated, national information leaflet, ‘What to do when someone dies in Scotland’, alongside local information.

Strategy outcome delivered

Outcome 1: Supportive communities

People of all ages have the information and support they need to help themselves and others live well with life shortening conditions, and through death, dying and bereavement.

Delivery partners

• Scottish Partnership for Palliative Care
• Integration Authorities and Health Boards
• NHS inform (NHS 24)
• NHS Education for Scotland Bereavement Network
• Public Health Scotland
• Third sector organisations and independent service providers
• Local and national community groups and networks

Measuring delivery

• Annual reports from the NHS inform palliative care dashboard show increased site and page visits with more use across Health Board areas.
• Annual reports from the Scottish Partnership for Palliative Care show increased public engagement and involvement in their community-led palliative care groups and networks.
• Strategic plans and annual reports from Integration Authorities and Health Boards show partnership working with local communities and promotion of accessible and inclusive public information about palliative care and care around dying.

Action Group 2: Delivering Palliative Care

Why does this need to change?

• A 24/7 palliative care helpline gives people confidence and support whenever they need advice about palliative care or what to do when someone is ill or dying.
• People can receive earlier palliative care when specialist palliative care services are integrated with general palliative care in the community and hospital-based services.
• Health and social care staff providing general palliative care for people of all ages with life shortening conditions in all places of care need 24/7 access to specialist palliative care advice supported by a palliative medicine consultant.
• Coordinated support is needed for babies going into children’s services, and for increasing numbers of young people with life shortening conditions moving into adult services, and their families.
• Everyone in Scotland who is bereaved should have information about what to do and how to find more support for themselves and others.

Action 2.1: Telephone support – Build on existing local and national telephone services so that people of all ages, and their families and carers have 24/7 access to support and advice on palliative care.

Action 2.2: Integrated palliative care – Develop and strengthen approaches to support integration of specialist palliative care within other hospital-based and community services caring for people of all ages with life shortening conditions.

Action 2.3: Adult specialist palliative care advice – Develop local and national systems so healthcare staff providing palliative care for adults of all ages have 24/7 access to specialist palliative care telephone advice supported by a consultant in palliative medicine.

Action 2.4: Paediatric specialist palliative care advice – Further develop the national Paediatric Palliative Care Clinical Advisory Service across Scotland so staff providing palliative care for children have 24/7 access to specialist paediatric palliative care telephone advice supported by a consultant.

Action 2.5: Care transitions – Develop guidance to support improved care transitions for babies, and for young people who have life shortening conditions, including from adult specialist palliative care services, as needed.

Strategy outcome delivered

Outcome 1: Supportive communities

People of all ages have the information and support they need to help themselves and others live well with life shortening conditions, and through death, dying and bereavement

Outcome 2: Adult palliative care

Adults of all ages with life shortening conditions and their families and carers receive general palliative care tailored to their needs, with specialist palliative care if required.

Outcome 3: Paediatric palliative care

Babies, children and young people living with life shortening conditions, or those transitioning to adult services, and their families and carers receive paediatric palliative care tailored to their needs, with specialist paediatric palliative care if required.

Outcome 5: Care around dying

People of all ages who are dying are cared for and comfortable wherever they die, with people close to them involved and supported.

Delivery partners

• Integration Authorities and Health Boards
• Specialist palliative care services for adults (NHS services and independent hospice services)
• Specialist paediatric palliative care services (Children’s Hospices Across Scotland (CHAS) and NHS services)
• Third sector organisations and independent service providers
• NHS 24
• Scottish Ambulance Service
• Realistic medicine programmes
• Adult palliative care networks
• Paediatric palliative care networks
• Other relevant clinical or care networks
• Scottish Partnership for Palliative Care

Measuring delivery

• Strategic plans and annual reports from Integration Authorities and Health Boards on palliative care service delivery may include:
  • Adult specialist palliative care services providing 24/7 specialist palliative care telephone support for each Health Board area.
  • Recommended tools used to support early identification of people for palliative care.
  • Provision of integrated specialist palliative care services in the community and hospitals, and plans to develop these in line with local population needs.
  • Current and future plans to address inequalities and promote inclusion for local populations that receive less palliative care or need more flexible approaches to care.
• Consultation with NHS 24 identifies options for providing national palliative care telephone support and improving how calls are handled.
• Data sharing and joint reporting with wider children’s services on care transitions for babies, and for young people.
• Follow-up survey of specialist palliative care services (adult and paediatric) compared to previous survey data.

Action Group 3: Future Care Planning in Palliative Care

Why does this need to change?

• Future care planning as a person-centred and ongoing approach to help people of all ages manage changes in their life and care is not well understood.
• Public engagement and involvement are essential for future care planning and people want information that is accessible and relevant to them.
• People prefer to talk about future care planning with health and care staff they know, therefore staff will need training in having shared decision-making conversations and in how to create person-centred future care plans.
• What matters to a person and information from their care team to guide staff providing health and care in an emergency situation has to be kept up to date and should be shared securely through a national digital future care plan.
• The NHS Scotland Cardiopulmonary Resuscitation Integrated Adult Policy (2016) for Adults and the Children/Young People Acute Deterioration Management Guidance provide a consistent, national approach needing to be maintained and updated.

Action 3.1: Person-centred future care planning – Work collaboratively with stakeholders, including people of all ages and their communities, to develop and provide inclusive, accessible information about future care planning.

Action 3.2: Delivering future care planning – Promote future care planning widely across relevant policy areas and in collaboration with Integration Authorities, Health Boards and other delivery partners, including development of national education resources for health and social care staff.

Action 3.3: Digital future care plans – Work towards developing person-centred, digital future care plans for people of all ages that can be held by the person and shared securely across healthcare and social care record systems, so people get the right help and support in a health or care emergency.

Action 3.4: Cardiopulmonary resuscitation – Review and update the NHS Scotland Cardiopulmonary Resuscitation Integrated Adult Policy (2016) for Adults and the Children/Young People Acute Deterioration Management Guidance.

Strategy outcome delivered

Outcome 4: Future care planning in palliative care

People of all ages living with life shortening conditions, their families and carers are supported to have person-centred conversations themselves and with their health and social care team about managing and planning for changes in their life, health and care.

Delivery partners

• NHS Education for Scotland (NHS Delivery from 2026)
• Integration Authorities and Health Boards
• Third sector organisations and independent service providers
• NHS Education for Scotland Technology Service (NTS)
• NHS Inform
• NHS 24
• Scottish Ambulance Service
• Realistic medicine programmes
• Adult palliative care networks
• Paediatric palliative care networks
• Other relevant clinical or care networks
• Scottish Partnership for Palliative Care
• Local and national community groups and networks
• National future care planning group

Measuring delivery

• Annual reports from the NHS inform dashboard show increased future care planning page visits with more use across Health Board areas.
• NHS inform resources are reviewed, updated, and new content is added to improve inclusive future care planning in collaboration with community groups.
• Strategic plans and reports from Integration Authorities and Health Boards show that future care planning is being implemented in their area and offered to more people of all ages with public information about future care planning available and accessible.
• Key Information Summaries are recommended and used to support staff in recording and sharing future care plans in all Health Boards.
• Education resources for staff on future care planning are developed with NHS Education for Scotland, and available on their website.
• Annual reports of data from NHS Education for Scotland dashboards show increasing use of the future care planning education resources, including Having Realistic Conversations, by health and social care staff in all NHS Board areas.
• An updated policy and guidance on cardiopulmonary resuscitation for people of all ages is developed and published with a national implementation plan.

Action Group 4: Education and Learning in Palliative Care

Why does this need to change?

• Health and social care staff who deliver palliative care, care around dying and bereavement support as part of their roles in the NHS, social care, third sector or independent organisations do not have the education and training they need.
• The Scottish Palliative Care Guidelines need to reflect current best practice and be developed further, as needed, to support palliative care and care around dying for people of all ages in all places of care.
• A Palliative Care Learning Hub is needed to provide a single point of access to a wide range of recommended education and learning resources for health and social care staff, organisations and education providers.

Action 4.1: Scottish Palliative Care Guidelines – Maintain, improve and promote the Scottish Palliative Care Guidelines as recommended, national guidance for health and social care staff who provide palliative care and care around dying for people of all ages.

Action 4.2: Scottish Palliative Care Learning Hub – Develop, launch and promote a national online learning hub based on the national Palliative Care Education Framework so health and social care staff, students, and education providers can access recommended education and training resources on palliative care, care around dying and bereavement support for people of all ages.

Strategy outcome delivered

Outcome 2: Adult palliative care

Adults of all ages with life shortening conditions and their families and carers receive general palliative care tailored to their needs, with specialist palliative care if required.

Outcome 3: Paediatric palliative care

Babies, children and young people living with life shortening conditions, or those transitioning to adult services, and their families and carers, receive paediatric palliative care tailored to their needs, with specialist paediatric palliative care if required.

Outcome 5: Future care planning in palliative care

People of all ages living with life shortening conditions, their families and carers are supported to have person-centred conversations themselves and with their health and social care team about managing and planning for changes in their life, health and care.

Outcome 6: Education and learning

Health and social care staff caring for people of all ages with life shortening conditions have access to recommended education and learning resources, so they are trained and supported to provide palliative care and care around dying.

Delivery partners

• NHS Education for Scotland (NHS Delivery from 2026)
• Scottish Social Services Council
• Scottish Palliative Care Guidelines Group (Healthcare Improvement Scotland)
• Scottish Palliative Care Learning Hub Group (NHS Education for Scotland - NHS Delivery from 2026)
• Integration Authorities and Health Boards
• Specialist palliative care services for adults (NHS services and independent hospice services)
• Specialist paediatric palliative care services (CHAS and NHS services)
• Third sector organisations and independent service providers
• Adult palliative care networks
• Paediatric palliative care networks
• Other relevant clinical or care networks
• Education providers – undergraduate, postgraduate, vocational training

Measuring delivery

• Scottish Palliative Care Guidelines Group annual reports show increasing use of the Scottish Palliative Care Guidelines across Scotland based on Right Decision Service data.
• A Scottish Palliative Care Learning Hub is available and annual reports include NHS Education for Scotland dashboard data showing increased use of the learning resources by health and social care staff in all Health Boards, and by education providers.
• Strategic plans and reports from Integration Authorities and Health Boards show that education planning for their health and social care staff includes palliative care and care around dying, and promotes use of the Palliative Care Guidelines and Palliative Care Learning Hub.
• The Scottish Palliative Care Guidelines and Palliative Care Learning Hub include development of resources for staff that enables them to provide more inclusive palliative care and they refer to these actions in their annual workplans and reports.

Action Group 5: Palliative Care Data and Experiences

Why does this need to change?

• Experiences of palliative care and care around dying are not gathered, analysed or reported well enough across Scotland using person-centred approaches.
• National population palliative care data reports give information on causes, place of care and death but do not provide data on people’s journeys through the health and care system that can inform improvements in service delivery.
• There are gaps in population data from some service providers such as independent hospices, and limited local and national population palliative care data is available to support service planning, delivery and outcomes reporting.
• There are no national datasets or standards that can be used to plan, evaluate and report measurable outcomes for all adult specialist palliative care services, nor are these available for paediatric specialist palliative care services.

Action 5.1: Lived experiences – Develop national guidance on inclusive ways of hearing, gathering and reporting experiences of palliative care, care around dying and bereavement support from people of all ages, their families and carers.

Action 5.2: Population data – Develop improved systems for national and local population palliative care data collection, sharing, and reporting for people of all ages across the health and social care system, including care homes and independent hospices.

Action 5.3: Adult specialist palliative care data – Develop an agreed Scottish minimum dataset for all adult specialist palliative care services that is used to support local and national service commissioning, delivery, monitoring and reporting.

Action 5.4: Paediatric palliative care data – Develop an agreed Scottish minimum dataset for all paediatric palliative care services that is used to support service commissioning, delivery, monitoring, and reporting.

Strategy outcome delivered

Outcome 1: Supportive communities

People of all ages living with life shortening conditions, their families and carers are supported to have person-centred conversations themselves and with their health and social care team about managing and planning for changes in their life, health and care.

Outcome 2: Adult palliative care

Adults of all ages with life shortening conditions and their families and carers receive general palliative care tailored to their needs, with specialist palliative care if required.

Outcome 3: Paediatric palliative care

Babies, children and young people living with life shortening conditions, or those transitioning to adult services, and their families and carers, receive paediatric palliative care tailored to their needs, with specialist paediatric palliative care if required.

Outcome 5: Care around dying

People of all ages who are dying are cared for and comfortable wherever they die, with people close to them involved and supported.

Outcome 7: Palliative care data

National and local service providers gather, use and share palliative care data to inform service planning and delivery, monitoring, evaluation and reporting, including experiences of palliative care and care around dying.

Outcome 8: Governance

Organisations responsible for health and social care work together and with third sector partners to improve planning, delivery, reporting and accountability for general palliative care and specialist palliative care services.

Delivery partners

• Public Health Scotland (PHS)
• Integration Authorities and Health Boards
• Healthcare Improvement Scotland (HIS)
• Care Inspectorate
• Specialist palliative care services for adults (NHS services and independent hospice services)
• Specialist paediatric palliative care services (CHAS and NHS services)
• Third sector organisations and independent service providers
• Adult palliative care networks
• Paediatric palliative care networks
• Other relevant clinical or care networks
• Scottish Partnership for Palliative Care

Measuring delivery

Lived experiences

• Guidance on recommended ways of hearing, gathering, reporting and responding to people’s experiences of palliative care and care around dying is developed with key stakeholders, and shared as part of national guidance for Integration Authorities and Health Boards.
• Reports from Integration Authorities and Health Boards show that recommended approaches and local information sources are being used routinely to hear and improve experiences of care for people of all ages and their families and carers.
• Health Boards using Care Opinion collect and report feedback on people’s experiences of palliative care and care around dying.

Population data

• Public Health Scotland (PHS) dashboards for people of all ages are developed further to provide more relevant and inclusive national population palliative care data that is reported annually by PHS.
• Reports from Integration Authorities and Health Boards show they can access relevant local palliative care population data.
• Third sector and independent service providers (e.g., care home organisations, adult independent hospices, and CHAS) are supported to provide data to PHS, and are able to access relevant palliative care dashboards.
• Data from national websites and reports from Integration Authorities and Health Boards show increased use of recommended tools and guidelines to support earlier identification of people for palliative care reviews and/or future care planning by health and social care staff.

Minimum datasets for specialist palliative care services

• Scottish minimum datasets for all adult specialist palliative care services are developed with Healthcare Improvement Scotland and the Care Inspectorate, agreed and implemented by Integration Authorities, Health Boards and independent hospices to support delivery, monitoring and reporting on specialist palliative care services.
• Scottish minimum datasets for paediatric palliative care are developed, agreed and implemented to support delivery, monitoring and reporting on paediatric palliative care services.

Action Group 6: Governance and Reporting for Palliative Care

Why does this need to change?

• Integration Authorities, Health Boards, third sector organisations, independent hospices and independent service providers are central to delivery of palliative care. Relevant infrastructures can improve care delivery in line with local needs reflected in reports that focus on outcomes that matter for people.
• National guidance for planning and delivery of palliative care needs to be updated and improved in partnership with Integration Authorities and Health Boards to support them in developing their local strategies and delivery plans.
• National reporting templates on delivery of palliative care and care around dying need to be developed for inclusion in guidance for Integration Authorities and Health Boards.
• Sustainable arrangements for commissioning and funding specialist palliative care services from independent hospices, as well as for NHS services, are required to enable them to work together to deliver specialist palliative care services that meet current and future population needs in their areas.
• Managed care networks and designated executive leads for palliative care within each Health Board area can help to improve partnership working across organisations and services, and with local communities.

Action 6.1 Palliative care for adults – Develop national guidance and reporting templates with Integration Authorities, Health Boards, and key stakeholders to improve service planning, delivery, monitoring and reporting of measurable outcomes data for general adult palliative care in line with their population palliative care needs.

Action 6.2 Specialist palliative care services for adults – Develop national guidance and local systems to support commissioning, financial and services planning, delivery and reporting of measurable outcomes data for all adult specialist palliative care services in line with population palliative care needs.

Action 6.3 Paediatric palliative care – Establish a strategic collaborative planning group to support commissioning, financial and services planning, delivery and reporting of measurable outcomes data for paediatric palliative care services across Scotland.

Action 6.4 Executive lead for palliative care – Develop national guidance with Integration Authorities and Health Boards for a named executive lead responsible for palliative care and care around dying for people of all ages in each Health Board area.

Action 6.5 Managed care networks – Develop national guidance for a palliative care managed care network or similar network to coordinate improvements in general palliative care and specialist palliative care services for people of all ages and their families and carers, and to build partnerships with local communities in each Health Board area.

Strategy outcome delivered

Outcome 1: Supportive communities

People of all ages living with life shortening conditions, their families and carers are supported to have person-centred conversations themselves and with their health and social care team about managing and planning for changes in their life, health and care.

Outcome 2: Adult palliative care

Adults of all ages with life shortening conditions and their families and carers receive general palliative care tailored to their needs, with specialist palliative care if required.

Outcome 3: Paediatric palliative care

Babies, children and young people living with life shortening conditions, or those transitioning to adult services, and their families and carers, receive paediatric palliative care tailored to their needs, with specialist paediatric palliative care if required.

Outcome 4: Future care planning in palliative care

People of all ages living with life shortening conditions, their families and carers are supported to have person-centred conversations themselves and with their health and social care team about managing and planning for changes in their life, health, and care.

Outcome 5: Care around dying

People of all ages who are dying are cared for and comfortable wherever they die, with people close to them involved and supported.

Outcome 6: Education and learning

Health and social care staff caring for people of all ages with life shortening conditions have access to recommended education and learning resources, so they are trained and supported to provide palliative care and care around dying.

Outcome 7: Palliative care data

National and local service providers gather, use and share palliative care data to inform service planning and delivery, monitoring, evaluation and reporting, including experiences of palliative care and care around dying.

Outcome 8: Governance

Organisations responsible for health and social care work together and with third sector partners to improve planning, delivery, reporting and accountability for general palliative care and specialist palliative care services.

Delivery partners

• Integration Authorities and Health Boards
• Specialist palliative care services for adults (NHS services and independent hospice services)
• Specialist paediatric palliative care services (CHAS and NHS services)
• Adult hospices leadership group
• Third sector organisations and independent service providers
• Public Health Scotland
• Adult palliative care networks
• Paediatric palliative care networks
• Other relevant clinical or care networks
• Scottish Partnership for Palliative Care

Measuring delivery

Integration Authorities and Health Boards

• National guidance and reporting templates are agreed with Integration Authorities and Health Boards, and used increasingly to improve palliative care planning, delivery, monitoring and annual reporting of measurable outcomes data for people of all ages and their families and carers. These templates may include:
  • ways being used to hear and learn from people’s experiences.
  • partnership working with local communities and groups.
  • using and promoting inclusive public information.
  • recommended tools used to support early identification for palliative care.
  • improvements in delivery of palliative care and care around dying.
  • future care planning conversations being offered across health and social care.
  • Scottish Palliative Care Guidelines and Palliative Care Learning Hub being recommended and used..
  • local and national population data used to inform service improvements.

Planning

• National guidance and local systems to support commissioning, financial and services planning, delivery and reporting of measurable outcomes data for adult specialist palliative care services in line with local population palliative care needs are agreed with Integration Authorities, Health Boards, and independent hospices and used to improve adult specialist palliative care services.
• A strategic collaborative planning group is established and produces an agreed service plan for paediatric palliative care services.

Leadership

• National guidance for an executive lead for palliative care for people of all ages is developed with Integration Authorities and Health Boards, to provide local leadership in each Health Board area and contribute to national developments in palliative care.
• National guidance for a managed care network (or equivalent) providing leadership and coordination for palliative care and community-led support is developed with Integration Authorities, Health Boards, and key stakeholders, with such networks established in an increasing number of Health Board areas and included in annual reporting by Integration Authorities.