Time is short for seriously ill children. Many will not be alive when the next general election takes place. It is vital that the new Parliament acts urgently to make sure they can access the palliative care they need.
Seriously ill children can have complex and unpredictable conditions and often need round the clock care provided by their families, seven days a week. They may need palliative care from the point at which their condition is diagnosed or recognised until the end of their lives, in a mix of settings that include hospitals, their homes and children’s hospices. However:
- too few children and families can choose to access palliative care at home out of hours and at weekends
- too few children’s palliative care services are sustainably planned, funded or staffed
- assessments and plans are rarely joined up around children and families
- anomalies in the benefits system mean that some families miss out on crucial financial support.
This means that too many children and families are missing out on the care and support they need, when and where they need it. It also means that too many seriously ill children need unplanned, prolonged emergency hospital admissions, when their needs could potentially have been met elsewhere. As a result, the NHS is failing to achieve non-cash savings in the resources it spends on these children and their families.
The government can help seriously ill children and their families to achieve the best possible quality of life – and make sure they receive the best possible end of life care. Together for Short Lives asks ministers to commit to make sure that, by the end of the new Parliament:
- Seriously ill children can access the palliative care services they and their families need, when and where they need it, including out of hours and at weekends.
- Children’s palliative care is funded equitably and sustainably by the NHS, local authorities and voluntary sector providers.
- A workforce plan is in place to make sure seriously ill children can access professionals with the skills and experience needed to provide palliative care.
- Assessments, plans and services are joined up for seriously ill children and their families across health, social care and education.
- Seriously ill children receive the financial support they need from the benefits system.
We ask the government to implement the action we ask for in our document ‘Delivering high quality palliative care for seriously ill children in the next Parliament’.
As members of the Disabled Children’s Partnership, we also support its manifesto asks and reflect them in this document.