Choice in palliative care for children and young people

You can read Together for Short Lives' briefing for Peers ahead of the House of Lords debate on 'Ensuring the Clinical Commissioners respect the undertakings made in 'Our Commitments to you for end of life care: The Government Response to the Review of Choice in End of Life Care'. This is due to take place in March 2017.

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 whole 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. 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.

Despite this, not all families get to choose how or where their child receives palliative care - whether in hospital, a children's hospice or at home. Families’ ability to choose where their child receives end of life care varies according to where they live, and depends on whether community-based services are available to provide palliative care around the clock. We have found that 73% of CCGs plan and fund community children’s nursing teams to provide care out of hours and at the weekend. This means that over a quarter do not, which is likely to restrict families’ ability to choose palliative care for their child at home or in the community.

In its 2016 document ‘Our Commitment to you for end of life care: The Government Response to the Review of Choice’, the government has recognised that children and young people 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. 

We call on the government to:

  • hold CCGs to account in implementing this commitment
  • 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.

A commitment to choice for children is included in other government children's palliative care strategies across the UK: 

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’.