Palliative care strategy: Palliative Care Matters for All

Our cornerstones

We have identified four cornerstones as the foundations of this strategy, which will underpin delivery and improvements to the understanding and experiences of palliative care for adults, children, and their families and carers. These are:

1. Working together to provide the care that's right for each adult or child, their family and carers

Person centred care and shared decision-making mean making sure that all decisions about a person's care are made jointly between them and their health and care team. We want people using health and care services, and those close to them, to feel empowered to discuss what matters to them, as well as their care and treatment options, fully with the staff caring for them. Involving people close to an adult or child, and anyone with legal responsibilities for their health and welfare, is central to palliative care.

This ethos sits at the heart of many of our existing programmes of work, including Realistic Medicine, which focusses on the delivery of Value Based Health and Care, meaning care that is not only of high quality, but delivers the outcomes and experiences that really matter to people. As part of this, palliative care aims to ensure that people have access to treatments that are of real value to them, improve their quality of life, and reflect their priorities, while keeping any hospital admissions as short as possible.

Getting it Right for Everyone (GIRFE) and Getting it Right for Every Child (GIRFEC) also seek to improve care across the whole life course by keeping the adult, child or young person, and their family and carers, at the centre of multi-agency care and all decision making, addressing inequities and giving equal value to their community support networks and access to wider public services, alongside health and social care services.

2. Taking a whole-system population health approach using data and people's experiences ^[6]

A population-based approach to palliative care helps us understand current and future palliative care needs nationally and locally, and uses population data to inform national and local strategies, delivery plans, actions and outcomes.

We know that Scotland has an ageing population with increasing numbers of people living and dying with multiple health conditions (multimorbidity). Around 90% of the 61,000 people dying each year (including over 200 children) will have one or more serious illnesses that mean they have palliative care needs. By 2040, the total number of people dying with palliative care needs is projected to rise by at least 12%. The greatest increase is expected in people aged 85 or over. A growing number of children are also living with serious health conditions for longer, and more young people will be transitioning to adult services.

National and local population data are essential to underpin local and regional planning of whole system approaches that are delivered across social care, primary health care, hospital care and with specialist palliative care; to plan for investment of services in supporting people to be in their preferred place of care wherever possible; and to ensure co-ordinated pathways into and between services as the person's needs change.

3. Ensuring equity and equality of access to palliative care for anyone who needs it

The right of everyone to the highest attainable standard of physical and mental health is enshrined in international human rights law in Article 12 of the International Covenant on Economic, Social and Cultural Rights. The World Health Organisation recognises palliative care, pain relief and bereavement support within these rights.

How adults and children, their families and carers, experience living and dying with different illnesses, and how they access health and care services and community support networks, is affected by a wide range of factors, including their health conditions, socio-economic situation, location, culture, beliefs and personal circumstances.^[7]

Through this strategy, we want to address inequities and respect diversity so that everyone in Scotland can access the right kinds of palliative care, care around dying and bereavement support for them.

4. Leadership across health and social care systems and with wider delivery partners, including third sector organisations (charities)

Palliative care is planned and delivered in a variety of settings, across a range of sectors, as outlined in Annex B. Within such a wide landscape, clear responsibilities, roles and accountability are essential for effective planning, resourcing, delivery and the monitoring and evaluation of palliative care. Leadership, collaboration and communication are paramount to make sure all partners are involved in a co-ordinated and comprehensive whole system approach to palliative care.

Going forward, the National Care Service (NCS) will provide opportunities to strengthen the delivery of integrated health and social care services, including palliative care, and to ensure greater consistency and quality of services for everyone.