Children and families face an unacceptable postcode lottery of support as a result of the way in which children’s palliative care is planned and funded by CCGs and local authorities. We call on the UK government to hold CCGs and local authorities to account for the way in which they commission children’s palliative care – and make it clearer what they are responsible for planning and funding.
What do we know about children’s palliative care commissioning in England?
In England, healthcare is planned, funded and monitored (a process known as “commissioning”) by organisations called clinical commissioning groups (CCGs). Social care is commissioned by England’s 152 upper-tier local authorities. Both CCGs and local authorities have a crucial part to play in making sure children and young people with life-limiting conditions and their families get the lifeline care they need. Sadly, our research shows that families face a postcode lottery of support across England because of the different ways in which CCGs and local authorities commission children’s palliative care.
For example, many families cannot access the community children’s palliative care they need out of hours and at weekends – caring for these children is not a 9 till 5 job:
- While 93% of CCGs commission community children’s nursing teams, just two-thirds (67%) commission them to provide care out of hours and at weekends. See the maps below for further detail.
- Although 63% of CCGs commission services to provide community paediatricians, only 29% commission them to provide out of hours and weekend care.
- While nearly all (95%) of CCGs commission equipment services for children with life-limiting conditions, just over half (52%) commission them out of hours and at weekends.
Blue=yes, grey=no response received, white=no
Are CCGs commissioning community children’s nurses to provide care out of hours and at weekends?
Blue=yes, grey=no response received, white=no
We have also found that:
- Most CCGs have not implemented the new clinical guidance for children who need palliative care. Fewer than a third (31%) of CCGs stated that they are currently implementing the new NICE guideline on ‘End of life care for infants, children and young people with life-limiting conditions: planning and management’. A further 27% stated that their plans to implement this guidance are ‘in development’.
- The government’s end of life care choice commitment is not being fulfilled in almost half of local areas in England. Almost half (46%) of CCGs are failing to implement the commitment and have no plans to do so.
You can read the full findings of the research in our ‘Commissioning children’s palliative care in England: 2017 edition’ report, which you can access from the resources bar on this page.
You can also access spreadsheets of all of the responses that we received to our freedom of information requests from CCGs and local authorities from the resources bar.
What are UK Government departments and NHS England doing to improve the way in which children’s palliative care is commissioned?
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.
What would Together for Short Lives like to happen?
We want to end the postcode lottery of care and make sure that all children with life-limiting and life-threatening conditions – and their families – are given the support they deserve.:
- The government should undertake a review of the children’s palliative care currently available to children with life-limiting conditions in England as a matter of urgency. This should lead to a cross-departmental children’s palliative care strategy for achieving outcomes for children and families.
- CCGs and local authorities should implement the existing policy framework which describes how children’s palliative care services should be planned, funded and provided. This includes: the government’s end of life care choice commitment for children; the NICE guideline and quality standard on end of life care for children; the Ambitions for Palliative and End of Life Care Framework
- Together for Short Lives’ guide to jointly commissioning palliative care for children and young people aged 0 – 25
- Commissioners should make sure that families can access care and support around the clock. We would like CCGs and local authorities to recognise the importance of out of hours support for families who have a child with a life-limiting or life-threatening condition and commission services accordingly. Many of these families care for their child 24/7 and need out of hours support from community children’s nurses, community paediatricians, equipment services and others.
- CCGs and local authorities should adopt the recommendations of the NICE guidance. In particular, commissioners should support the development of Managed Clinical Networks, as has happened in Wales, which will help the planning and commissioning of services to meet the needs of children and families.
- The government and NHS England should communicate commissioning responsibilities more clearly. We would like the government and NHS England to urgently write to CCGs and local authorities to make clear which parts of the health and care system in England are responsible for commissioning palliative care for children and young people aged 0 – 25. This communication should set out the difference between specialised and general children’s palliative care and also promote our joint commissioning guidance.
- The government and NHS England should consider appropriate mechanisms to bridge the children’s palliative care accountability gap. They should develop a system to monitor how CCGs and local authorities are supporting children’s palliative care in accordance with their legal duties.
How can I get involved?
You can play an important role in pressing the government, the NHS and your local authorities to make sure that seriously ill children have access to lifeline palliative care that is well planned, funded and provided. Please visit our #fundnotfail campaign page to find out what you can do to help.