Whether or not families can choose how or where their child receives palliative care depends on their condition and what is in their best interests. However, too often, families’ ability to choose depends on whether their local community children’s palliative care services are planned, funded and have enough staff. Together for Short Lives is calling on the UK Government to hold NHS organisations to account in implementing its end of life care choice commitment; take steps to make sure that the NHS and local authorities understand what they are responsible for commissioning; and make sure that there are enough professionals who can provide children’s palliative care.
We have found that while 93% of clinical commissioning groups (CCGs) in England commission community children’s nursing (CCN) teams, just two-thirds (67%) commission them to provide care out of hours and at weekends. Shortages in the CCN workforce are also likely to restrict families’ ability to choose palliative care for their child at home or in the community: the Royal College of Nursing (RCN) recommends that for an average-sized district, with a child population of 50,000, a minimum of 20 whole time equivalent (WTE) community children’s nurses are required to provide a holistic community children’s nursing service. The Office of National Statistics estimates that there are 13,770,873 children aged 0-18 in England. If the RCN recommendation were to be met, this would therefore require approximately 5,508 community children’s nurses. There are currently just 535 community children’s nurses in England.
Families can be left with huge guilt and sadness if their child dies in pain or in a setting where they do not feel comfortable and at peace. It can affect the memories they have of their child’s life. Children’s palliative care which is funded and provided effectively can support families to make plans to enable every child to have as good a death as possible, whether this is hospital, a children’s hospice or at home. This means that families can look back on their child’s life and death feeling confident that they did all that they could to make it as good as it can be.
What would Together for Short Lives like to happen?
We call on the UK Government to:
- Hold CCGs to account in implementing the commitments it has made on end-of-life care in its 2016 response to the Review of Choice.
- Take steps to make sure that CCGs understand what they are responsible for commissioning in terms of children’s palliative care.
- Make sure that there are enough nurses with the right skills and competencies to care for children who need palliative care in the voluntary sector.
- Make sure that clinical commissioning groups commission community children’s nursing teams out of hours and at weekends.
- Ensure a sustainable community children’s nursing workforce.
- Ensure that managed clinical networks are established across England.
What are the UK’s governments doing to give families more choice?
In its 2016 document ‘Our Commitment to you for end of life care: The Government Response to the Review of Choice’, the UK Government has recognised that children and young people in England with complex needs should enjoy the same independence and choice which we all expect. It states that it is essential that the voices of children and young people are heard, so that they are involved in their care, able to express their needs and preferences and make informed choices about their care.
The government has also explicitly recognised the role that Together for Short Lives has in securing joined-up palliative care for children and young people alongside other voluntary sector organisations.
This commitment applies to children in England only, but similar commitments to choice for children are also included in the children’s palliative care strategies of the devolved government’s of Northern Ireland and Wales:
- In Northern Ireland, the Department of Health’s ‘Providing High Quality Palliative Care for Our Children: A Strategy for Children’s Palliative and end-of-life care 2016-26’ states that a regional protocol should be developed to facilitate rapid discharge and transfer from hospital to home, hospice or any other chosen setting, to facilitate choice in relation to the child’s place of death.
- ‘Welsh Government’s End of Life Care Delivery Plan’ defines the percentage of people dying in their place of preference as an outcome measure.
Choice for children and young people at the end of their lives is also an important recommendation made by the National Institute for Health and Care Excellence (NICE) in its recent clinical guideline ‘End of life care for infants, children and young people with life-limiting conditions: planning and management’.