Palliative care strategy: Palliative Care Matters for All

Outcome 1: People have the understanding, information, skills and confidence to support themselves and others to live well with serious illnesses or health conditions; to plan for the future; and to support each other through dying and bereavement.

Understanding palliative care

Palliative care offers much more than care when adults or children are dying, but many people still think offering palliative care means someone is near death. The Gathering Views consultations carried out by HIS found a range of opinions and misconceptions but confirmed that those with experience of palliative care valued support and care focused on the adult or child's quality of life and wellbeing. People often talked about the importance of feeling cared for, treated as a person, and having their needs met.

"It (palliative care) provides support at a very emotional, stressful and scary time in your life."

When asked how best to raise awareness of, and promote, a better understanding of palliative care early on in someone's illness, many people said that information should be available around the time of diagnosis and be appropriate to a range of health conditions, cultures and localities. The need for information in many formats in a wide range of places was highlighted, including leaflets; social media; and information in GP surgeries, hospitals, community groups and schools; as well as from health and social care staff.

People have diverse and varying views about the value of talking openly about death and dying and the concept of a 'good' death. It helps to talk openly or comfortably about living with serious illnesses, dying and bereavement, so everyone is more able to give and receive support from others. However, people from different backgrounds may have diverse values, views and ways of coping. Discussions about what matters to adults and children, their families and carers are opportunities to make sure approaches to care and support are personal, respectful and sensitive to individual and cultural preferences. Health and care staff who provide person-centred palliative care without naming it as such could also think about explaining how this type of care can add value to life, health and care for adults and children.

NHS Inform provides a central point of information about palliative care, linked to a much wider range of information from other organisations. Third sector organisations also promote awareness and knowledge through public events, social media, online resources and national and local networks, (e.g. Good Life, Good Death, Good Grief; Demystifying Death Week; and To Absent Friends Festivals).

Wider support

Adults with serious illnesses and children or young people with serious health conditions, their families and carers need support and signposting, through health and social care staff and community support groups, to the right information about how to get practical help with financial benefits and housing or legal matters.

Some groups also need more flexible and tailored approaches to palliative care. For example, people living in insecure housing or who are homeless can often have multiple health problems and wider complex needs aggravated by serious illnesses, and the prison population is ageing, with older prisoners likely to have multiple health conditions and serious illnesses.

Palliative care in prisons

An independent hospice supports prisoners with palliative care needs in local prisons. David*, who had progressive blood cancer, was referred and visited regularly by the hospice community palliative care team providing support and advice to him, his care team and his family. His symptoms and function improved, and he talked about what mattered to him and what the future might hold. Working with the prison staff, social workers, his hospital specialist, chaplains and prison nurses, the hospice team coordinated conferences to plan for care when he was dying. When his health worsened, a planned transfer to the hospice enabled him to die, while still in custody, with his wife and daughter present.

The 'Spectrum of Palliative Care' education tool is improving palliative care for people in prisons across two Health Boards. Prison healthcare staff are trained to identify people who need palliative care and have reported improved confidence in providing it. This approach is now embedded in the prison healthcare programme. Palliative care needs are met earlier and more fully, including future care planning conversations, integration with frailty pathways, better access to rehabilitation and speech and language services, improved management of palliative care by prison nursing teams, and higher quality and more frequent discussions about palliative care at multidisciplinary team meetings.

*Not his real name

Living in poverty leads to earlier ill health with more multimorbidity and a shorter life span, with longer periods of poor health than for those living in more affluent areas. Further to this, we already know that households with a disabled adult or child are at greater risk of poverty, and the Dying in the Margins project^[8] highlighted the experiences of people from an urban area who were dying at home and living with financial hardship and deprivation. The Scottish Government is continuing to take action to reduce poverty, with the eradication of child poverty being the Scottish Government's top priority.

The Benefits Assessment Under Special Rules in Scotland (BASRiS) is specifically for adults and children with serious illnesses or health conditions that are 'advanced and progressive and not amenable to curative treatment, and who need additional care and support' in line with the Scottish definition of 'terminal illness.' BASRiS is the only supporting information required when someone is applying for disability benefits under the special rules. It is important for this rapid access to disability benefits to be accessible to everyone entitled to it and for professionals to have clear information about their role and responsibilities.^[9]

We also recognise the impacts of other, wider policies and legislation on the experiences of adults with serious or life-threatening illnesses and children with serious health conditions, their families and carers. These must be taken into consideration, with improvements made to the wider support available to people in this situation. This also applies to policies that seek to promote inclusion of communities who may be impacted in different ways.

Community networks and support

Local communities play a key role in supporting adults and children, as well as their families and carers, and their contributions should be better recognised, valued and included in local planning of whole system approaches to palliative care. This includes Compassionate Communities, which take a community development approach to supporting local people to take action to improve people's experiences of serious illness, dying, death, loss and care. ^[10] Local areas often have a wide range of third sector projects which directly or indirectly provide support.

Truacanta Project

This project was based on community led development, with a project manager supporting five projects across Scotland.^[11] A community asset-based approach allowed projects to grow naturally, with groups exploring for themselves how people can be supported to deal with deteriorating health, death, dying and bereavement. These were non-prescriptive, directed towards local needs, and developed at a pace reflecting local capacity. Being part of a national project with networking events gave groups access to support, peer learning/sharing and a sense of credibility and pride. However, community development approaches were time consuming, did not lend themselves to planning, and progress could feel intangible. There were clear benefits in building grass-roots insights and connections, but the need for ongoing collaboration and compromise brought challenges in terms of decision-making, relationships, action, people and money. Truacanta has left a legacy in all the communities it has touched, and there are plans for many aspects of the project's work to be sustained going forward, including the national network.

There are well-established training and community-led education opportunities covering the basics of providing palliative care and care for dying people. These enable people to be more comfortable and confident in supporting family, friends, neighbours and community members who are dying or bereaved. In Scotland, these include End of Life Aid Skills for Everyone (EASE)^[12] and Last Aid^[13]. Tailored support and training in managing medicines, medical devices and care equipment also help families and carers.

As part of the finalisation of the strategy and development of the delivery plan, Scottish Government will work with delivery partners to further develop the following proposed actions, timings and appropriate governance arrangements:

1.1. Take forward work across relevant policy areas to improve the wider experiences of people receiving palliative care and care around dying; remove barriers to access; and maximise support, including in areas related to children and young people, equalities, justice, fair work, housing and tackling poverty.

1.2. Explore ways to promote access to financial benefits for adults or children with serious illnesses or health conditions and increasing health and care needs under the Benefits Assessment for Special Rules in Scotland (BASRiS) application process through improved public information and professional education and guidance.

1.3. Work with agencies and statutory and third sector organisations responsible for housing and services for people who are homeless or vulnerably housed to develop and promote ways to enable adults and children living with serious illnesses or health conditions to access the social, practical and financial assessments and support they need.

1.4. Collaborate with NHS 24 and wider partners to make sure the NHS inform website provides relevant, up to date and accessible public information about future care planning, palliative care and care around dying for adults and children, families and carers, including links to support organisations and resources for people from diverse groups and communities.

1.5. Support the Scottish Partnership for Palliative Care (SPPC) to provide a sustainable, national infrastructure that enables statutory and third sector organisations palliative care providers, staff, community groups and individuals to work together to promote understanding and awareness of living and dying with serious or life-threatening illnesses and serious health conditions; and to contribute towards empowering people to be more informed and equipped to plan ahead and support each other through serious illness, dying, death and bereavement.

1.6. In partnership with the third sector, widen access to community-led public education opportunities which provide knowledge, skills, resources and training, to help more people be comfortable and confident in supporting family, friends and people in their local community when someone is dying, caring or bereaved.

1.7. Work with Integrated Joint Boards (IJBs) and Health and Social Care Partnerships (HSCPs) to explore options for their strategic plans for palliative care to recognise, and work collaboratively with, local community groups, networks and projects that offer support for adults with serious illnesses; children and young people with serious health conditions; and their families and carers.