Palliative care strategy: Palliative Care Matters for All

Introduction

People with serious or life-threatening illnesses, or with a child who has a serious health condition, often say that what matters most to them is living their life as well as possible.

We know that what makes a difference to people is person-centred care; clear and sensitive communication; information about what to expect and how to ask for help; being free of pain and other symptoms; and effective coordination of services. Just as important are wellbeing and social, practical and spiritual support from health and social care services and from wider social, personal and community networks.

Palliative care focuses on what matters to people in their lives, in the context of their own personal, family, social and cultural circumstances, as well as on their health conditions. It goes beyond treating illnesses, to supporting each adult or child, and their family and carers, to maintain their quality of life, wellbeing and independence.

Palliative care provides opportunities to respond to different people and situations over months or years, as well as when someone is dying. It is important to make sure each adult or child has equitable access to the right palliative care and support for them where and when they need it.

Adults and children with palliative care needs spend most of their lives at home, supported by their families, friends and neighbours, local communities, volunteers, and many different support groups, rather than by health and social care services. Those providing that support often need care and support themselves.

What is palliative care?

Palliative care prevents and relieves suffering through the early identification of people who need this care, individualised assessment and management of pain and other symptoms, along with mental health, social, family, or spiritual problems.^[1] It can be provided at home, in hospitals, in care homes and in any other place of care.

Person-centred palliative care, along with community-led support, can signpost people to help with practical issues like social isolation, financial benefits, housing issues, and legal advice. When an adult, child or young person is dying, palliative care shifts to making sure they are free of pain and other symptoms; well cared for; and that they have people who matter to them around.

While bereavement is the time after someone has died, grief is the emotional response to loss and can begin well before someone dies – sometimes from the point of diagnosis. Loss and anticipatory grief can be experienced by the person who is ill, as well as their families, friends and carers. There may be wider impacts for people who are bereaved, such as loss of future hopes, changes in family relationships, and financial or housing insecurity. Bereavement support is an essential part of palliative care.

When is palliative care delivered?

The best time and ways of providing palliative care will be different for each adult and child.

Palliative care can be introduced when a life-threatening illness or serious health condition is diagnosed, as soon as we recognise that an adult or child has increasing problems affecting their quality of life, or when it becomes clear that they will not recover from these serious illnesses and health conditions.

People who have experienced palliative care know that it can support adults and children, as well as their families and carers, to live well over years, and not just when someone is dying.

Many people still believe that introducing palliative care means someone will die soon, and some worry that starting palliative care may mean withdrawal of other treatments and care. However, people can, and do, continue to receive treatment for their underlying health conditions alongside palliative care.

Our aims

Through this strategy, we aim to ensure that, by 2030:

• adults and children in Scotland have more equitable access to well-coordinated, timely and high-quality palliative care, care around dying and bereavement support based on what matters to them, including support for families and carers.
• Scotland is a place where people, families and communities can support each other, take action and talk more openly about planning ahead, serious illnesses or health conditions, dying and bereavement.
• adults and children have opportunities to plan for future changes in their life, health and care with their families and carers.

Working in partnership across health and social care, and with local authorities, as well as local communities and wider support networks, will be key to achieving these aims, and leaders at national and local levels will need to have in place whole-system, population-based approaches to planning and delivering palliative care and community-led support.

Strategy development

This draft strategy has been developed through a Strategy Steering Group (SSG), representing the wide range of partners involved in palliative care, chaired by a National Clinical Lead for Palliative Care and supported by a Clinical and Professional Advisory Group (CPAG). Wider engagement through six working groups and with other key stakeholders, including Health Boards, Health and Social Care Partnerships, Primary Care and third sector delivery partners, has also contributed to the draft strategy.

The strategy has been informed by evidence gathering guided by the SSG and its working groups. Additional papers, which set out the data and evidence, have been published alongside it. This evidence includes:

• Lived Experience and Public Views: research with adults, children and their families and carers, from a wide range of backgrounds and circumstances, about their experiences and understandings of palliative care^[2].
• HIS Gathering Views: a new public consultation delivered by Healthcare Improvement Scotland (HIS) asking people across Scotland, including rural and island communities, to talk about their understanding and experiences of palliative care^[3].
• Population Data and Research: data on current and future Scottish population palliative care needs for adults and children^[4].
• Service Mapping Survey: surveys of palliative care delivery across Scotland^[5] followed by consultation and engagement meetings to validate and discuss the survey findings, and additional meetings with service providers to discuss palliative care in the community, urgent palliative care and palliative care in acute hospitals.

Strategy delivery

Work has already begun on the delivery of some of the actions within this draft strategy. Alongside the final version of the strategy, we will publish a delivery plan setting out our approach to actions within this strategy. The delivery plan will explain who will be responsible for delivery; the delivery steps to be taken, and the timescales for doing so; the outcomes they are expected to achieve; and how we will measure improvements. The final version of the strategy itself will also provide further clarity around responsibility and accountability for the delivery of each individual action.

The SSG will oversee our response to the consultation and will then evolve to oversee delivery of the actions. We will also review and develop the current working groups to make sure we have all the working groups and partnerships required to deliver the agreed aims, outcomes and actions in the final strategy.

This Strategy, and its delivery, will reflect the principles within the National Clinical Framework, which sets out a strategic approach to delivering the needs of the population in a safe and sustainable way. This strategic approach is based around portfolios of care, to ensure appropriate direction is provided to all aspects of care delivery. Palliative care is one of the categories of care.

As a key delivery mechanism, Strategic Networks will be responsible for supporting the development of the strategic direction, linked to the national vision across Scotland for the portfolio of care, for which they are responsible. They will establish service standards and outcomes, provide oversight for each clinical area within that portfolio, and will be the owners of the respective Operating Models.

We will publish a palliative care annual report on the Scottish Government website outlining progress on delivery of the final strategy outcomes and actions, including measures of access to palliative care and care quality indicators.