Commissioning children’s palliative care in England

Click here to watch a recording of a recent webinar on palliative and end of life care for children and young people which Together for Short Lives hosted jointly with NHS England.

Click here to read our recent presentation on Children's Palliative Care Commissioning in the North West of England.

Click here to read our guide to jointly commissioning children’s palliative care for NHS clinical commissioning groups (CCGs) and local authorities.

In England, CCGs, comprising GPs, doctors, nurses and other professionals, are responsible for commissioning local health services. CCGs are accountable to NHS England. Local authorities are responsible for commissioning local social care services for children and young people. The Children and Families Act 2014 places a duty on the NHS and local authorities to jointly commission care for children and young people with special educational needs and disabilities (SEND) between the ages of 0 - 25.

The government’s 2016 response to a review of choice in end of life care states that to support high quality personalised care for children and young people, commissioners and providers of services must prioritise children's palliative care in their strategic planning; this is so that services can work together seamlessly and advance care planning can be shared and acted upon.

The government’s commitment also sets out the range of services which children and young people with life-shortening conditions rely on from diagnosis until the end of their lives. It highlights the role of a range of services, including children’s hospices; community children’s nursing services; paediatric inpatient services, specialist palliative care consultant teams; GPs; and the wider network of supporting services such as school services.

Together for Short Lives wants to see children’s palliative care commissioned effectively so that children and families get the support they need. This means clarity about what is commissioned nationally and locally, and fair and transparent commissioning from all providers in the statutory and voluntary sectors, including children’s hospices.

Children with life-threatening and life-limiting conditions are small in number, but very often need highly complex care. This can make it challenging for commissioners to plan and commission effectively. We want to see CCGs collaborating to commission children’s palliative care across a larger population.

As well as holding CCGs to account, NHS England commissions specialised health services. You can read NHS England's specification for specialised children's palliative care services here. Specialised children's palliative care includes managing complex symptoms and prescribing unlicensed medicines.

NHS England is also currently piloting an Integrated Personal Commissioning (IPC) programme in local areas across England. This aims to bring health and social care commissioning together - identifying the total expenditure at the level of the individual, giving people more control over how this is used and enabling money to be spent in new ways. One of the groups for which the programme is being tested is children and young people with complex needs, including those eligible for education, health and care (EHC) plans.

To help bring about more effective commissioning for children's palliative care in England, Together for Short Lives is supporting the children's palliative care sector to build relationships with local commissioners. We also provide our joint commissioning guide to help CCGs and local authorities to plan and fund children's palliative care.

As an example of good local joint commissioning, Luton Clinical Commissioning Group Children and Young People’s Palliative Care Strategy 2016 – 2019 has been developed collaboratively with a working group which comprised members from Luton Clinical Commissioning Group; Luton Borough Council, Luton & Dunstable University Hospital, Keech Hospice and a local children’s charity.