Understanding the growing number of children who need palliative care

How can you effectively plan and fund services for children and young people with life-limiting conditions if no one knows where they are? This ignorance must be challenged.

The number of children and young people with life-limiting conditions is increasing. Children’s palliative care charities want to provide vital care for every child who needs it, but state funding is not keeping pace with demand.

For example, a 2015 report showed a 50% increase over a 10-year period in the number of children and young people with life-limiting conditions in Scotland; their numbers have risen from 4,334 in 2004 to 6,661 in 2014.1 This is a dramatic rise; if it had been replicated across the UK as a whole, the number of children and young people with life-limiting conditions could be much more than the current estimate of nearly 50,000.

Worryingly, the number has never been monitored. As a result, the UK Government, the NHS and local councils are failing to plan and budget to meet the needs of children and young people.

The SEND Code of Practice, which provides practical advice on how to carry out statutory duties to identify, assess and provide services for children and young people with special educational needs and disabilities (SEND), was approved by Parliament in July 2014. It makes two specific references to children's palliative care:

  • Health and wellbeing boards should consider the needs of vulnerable groups 
    including those with SEN and disabled children and young people, those needing 
    palliative care and looked after children.
  • Building on the Joint Strategic Needs Assessment (JSNA) the local offer must include 
    information about health care provision for children and young people with SEN. This 
    should include palliative and respite care and other provision for children with complex health 
    needs.

We want the UK government to make sure that the number and needs of children and young people with life-limiting conditions are more accurately monitored. This will mean that we can:

  • understand the true demand for children’s palliative care
  • map and identify the gaps in care for children with life-limiting conditions
  • make sure that care is planned and funded more effectively to meet the needs of these children.