Palliative care strategy: Palliative Care Matters for All

Outcome 7: Babies, children and young people living with serious health conditions, and their families and carers, will experience improved support as their distinctive needs are recognised and addressed by paediatric palliative care, including care around dying, or as they transition into adult services.

It is essential that any child or young person – no matter where they live or their diagnosis – has timely access to high quality palliative care and care around dying, and that their family and carers are also supported.

Parents and carers with parental responsibility say how important it is for them to fulfil their parental role. They need support to do this amongst their caring responsibilities, and to make the most of precious time with their child, creating memories and having space and privacy to be a family. They need to be fully informed, share responsibility for decisions, and advocate for their child's best interests. Palliative care needs to include direct care and emotional support for the parents and wider family, including siblings.

Paediatric palliative care

Paediatric palliative care is provided mainly by specialists from other paediatric specialties, as well as general and community paediatrics. Children with palliative care needs often have unpredictable health, with significant roles for paediatric and neonatal intensive care specialists. While all these clinicians have experience and skills in the delivery of palliative care, it is rarely recognised in their role or job plan. In addition to medical and nursing services, paediatric palliative care draws on a wide range of support from allied health professionals, social work, family support, spiritual care, psychology, play therapy, advocacy, benefits advice, pharmacy and bereavement services.

Specialist paediatric palliative care

Hospital specialist paediatric palliative care is delivered by expert multidisciplinary teams, with a lead consultant in paediatric palliative medicine. There are two hospital-based specialist services in NHS Greater Glasgow and Clyde and NHS Lothian. The teams have expertise in symptom management, future care planning and complex decision-making, as well as coordination and delivery of care around dying across paediatric services.

The specialist staff work alongside other teams involved in a child's care to provide an extra layer of support to both families and professionals where symptoms are hard to manage or where care is highly complex. Specialist paediatric palliative care teams work across hospital and community settings, and in collaboration with other services, including Children's Hospices Across Scotland (CHAS), to support families in their preferred place of care.

Perinatal palliative care

Perinatal palliative care is the delivery of palliative care during pregnancy, birth and neonatal care for babies with serious health or life-threatening conditions. Recognition of the need for palliative care may be from before birth; soon after birth; or further into the postnatal period.

Perinatal palliative care should be delivered by a wide multi-disciplinary team, which may include medical staff, midwives, nurses, allied health professionals and social workers, usually alongside neonatal intensive care teams. This may include additional support from perinatal professionals (nurses and doctors) with a special interest and training in perinatal palliative care. The expertise of specialist paediatric palliative care teams may be required to support some families.

Hospice care

In Scotland, there is one children's hospice provider – CHAS – with two hospices. CHAS provides specialist multi-disciplinary care for children and young people, families, parents and other carers with parental responsibility.

CHAS supports babies, children and young people from pre-birth to 21 years, working in partnership with Health Boards and Local Authorities to provide care and support for the whole family in their own homes, in hospital or in a hospice.

The focus of CHAS' work is to support families through the three critical stages of their child's palliative care journey – learning their child is seriously ill and may die young; living well; and dying well and bereavement.^[28] CHAS supports the whole family to live well with uncertainty and complexity, and offers holistic care, including activities sessions; sibling support; and advocacy (financial, legal and wellbeing). As a child's health deteriorates, or during periods of crisis (or to prevent crisis), hospices can support care at home through hospice at home services.

Hospice care can be short, planned breaks during periods of stability; crisis/hospital step-down care after a long hospital admission; specialist care when a child's health is more unstable or deteriorating; and care around dying, including a rainbow room, which isa cold room where a child who has died can stay until the time of their funeral.

There is ongoing collaboration between CHAS and Health Boards to support the funding and delivery of paediatric palliative care across all settings. CHAS contributes to funding for paediatric palliative care teams in NHS Ayrshire and Arran, NHS Grampian, NHS Greater Glasgow and Clyde and NHS Lothian. This partnership working – together with collaboration with social care and education – supports families to access holistic paediatric palliative care, with the aim of supporting seamless care delivery across all places of care.

Care at home

When a child's condition is unstable, deteriorating, or they are dying, and the family would like care at home, staff and teams strive to support this choice. Care at home can be challenging to provide or sustain, and often relies on bespoke, multi-agency collaboration (hospital, community teams and hospice) and additional input from staff on a 'good will' basis. Children may have symptom management plans and 'just in case' medication boxes, like those for adults.

24/7 models of paediatric palliative care

There are a range of service models within and across Health Boards in Scotland for paediatric palliative care, but our paediatric survey found inequities in provision, especially outside standard working hours. This can be improved through a national 24/7 on-call specialist paediatric palliative medical and nursing model.

CHAS and Health Boards are working together to develop a national specialist clinical advisory service with 24/7 access, and a specialist multi-disciplinary team, initially through utilising the current paediatric palliative care medical workforce across CHAS and the NHS. However, further resources will be required to ensure expansion to include specialist nursing advice and support. A national, specialist team can offer an additional level of support and expert advice to colleagues across Scotland.

Identifying children and young people for palliative care

There is a need to consider the use and further development of tools to help staff to identify babies, children and young people with palliative care needs in hospitals and at home. Examples include the Paediatric Palliative Screening Scale (PaPaS Scale)^[29] and the British Maternal and Fetal Medicine Framework^[30].

Transition from paediatric to adult services

The move from paediatric palliative care services into adult services can be a distressing time for many young people, as the people and services that they have relied on for care and support for years change or fall away. Those involved in the care of a child or young person as they transition from one service to another need to work together, alongside the young person and their family, to ensure that transition is as smooth and seamless as possible. Adult hospices have a role in the transition and support of individual young people who are living with serious health conditions, and it is recognised that this is a growing area of need to be addressed by wider adult services, including adult specialist palliative care services, which requires relevant processes, training and support.

Children's hospitals and CHAS provide timely transition support to wider adult services, including health and social care (from multi-disciplinary teams); legal (e.g. Power of Attorney, guardianship, advocacy); financial (benefits, self-directed support); and social support (friendships, leisure, further education and access). The age of transition will vary according to individual needs. CHAS work with young people up to the age of 21.

Prince and Princess of Wales Hospice Transition Programme

This adult hospice works collaboratively with CHAS to transition and support young adults from the age of 16, and has developed a transition pathway. There is a specific young adult service, which provides symptom management, future care planning and care around dying, as well as social and education opportunities, carer support, and short break stays.

Bereavement support

While principles and good practice recommendations for bereavement care and support are relevant when a baby or child dies, loss and grief may have multiple overlapping phases at different times, from diagnosis through survival, to living as well as possible, then dying, death and memory making. Grief reactions affect many individuals and groups, including the child, parents, carers, other children in the family, friends from school and social networks.

The Scottish Government funds a National Hub to review and learn from the deaths of children and young people up to the age of 18, and to improve the support offered to bereaved families and carers. Produced in collaboration with third sector colleagues, its first survey of families and carers in When a child dies: Learning from the experiences of bereaved families and carers demonstrated that bereavement support, and how it is accessed, varies across Scotland.

In relation to bereavement support for siblings and other family members, a small number of families commented on the support provided by staff in schools; and families and bereaved brothers or sisters had also benefited from support provided by charities and hospices, including telephone support, interactions with play specialists, group support, one-to-one support, and helpful literature. The value of third sector organisations and independent hospices was clearly felt.

Clinical ethics

Health and social care staff providing palliative care to children and young people can face increasingly complex decisions around the care of babies and children within the principles of family-centred care, Realistic Medicine and inclusion of parental views. This can lead to complex ethical dilemmas. Support for staff in this position may be available through registered chaplains and peer networks.

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:

7.1. Work with key partners to develop a national approach to service planning for all paediatric palliative care, through a multi-agency steering group, to ensure children and families across Scotland have access to the services they need, wherever and whenever these are required, and to ensure that these services are equitable.

7.2. Work with CHAS and Health Boards to review current models and develop a national specialist paediatric palliative care service, available at all times (24/7) to meet the needs of children, families and staff across Scotland in all places of care.

7.3. Support and develop improved transitions for young people with serious health conditions based on Getting It Right For Everyone (GIRFE) practice model, and the co-designed GIRFE 'team around the person' toolkit for young people in transition from GIRFEC (Getting it Right for Every Child) to GIRFE.

7.4. Draw on best practice models to develop and agree paediatric palliative care standards to ensure children and families across Scotland have equitable access to high quality general and specialist paediatric palliative care services wherever and whenever these are required.

7.5. Explore options for a national approach to providing ethical clinical review of decision making in paediatric palliative care.