Commissioning in England 2017

Girl in bed with mother at Martin House Children's HospiceOur ‘Commissioning children’s palliative care in England: 2017 edition’ report sets out what clinical commissioning groups (CCGs) and local authorities are claiming they do to plan, fund and monitor (a process known as ‘commissioning’) care for the 40,000 children with life-limiting and life-threatening conditions in England. 

Our ambition is to use this research to work with government and commissioners to help improve the commissioning process, to highlight gaps and start to identify where it is working well so others can learn how to improve commissioning.  

Read the report

Key Findings

Our research shows that families face a postcode lottery of support across England and that 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:

Are CCGs commissioning community children's nurses? 

Blue=yes, grey=no response received, white=noView the map

Are CCGs commissioning community children's nurses to provide care out of hours and at weekends? 

Blue=yes, grey=no response received, white=noView the map

We 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.

You can also see all of the responses that we received to our freedom of information requests from CCGs here and local authorities here.

Join our campaign

We want the government to undertake a review of the children’s palliative care currently available to children with life-limiting conditions in England as a matter of urgency.

You can play your part by emailing or writing to your local MP to ask them to help. We have created a template letter to help you to get involved.

You can find your MP's email address here.

Help us to do more

Together for Short Lives is a charity and relies on donations to continue our work to speak out for children and young people who are expected to have short lives. To help us with this work, and to help us tackle the issues we've uncovered in our report, please consider donating using the link below.