Our ‘must-dos’ for the UK Government

High quality children’s palliative care is vital and can make a real difference to the lives of seriously ill children and their families. But too many children experience palliative care that is disjointed, uncoordinated and which does not meet national standards.

To address the systemic problems that are stopping children getting the care they need, we believe the UK Government should take specific actions in three areas:

• Tackling workforce shortages

• Addressing funding shortfalls

• Improving commissioning, leadership and accountability

With the 10-Year Health Plan now published, a long-term workforce strategy forthcoming, and the Department of Health and Social Care (DHSC) exploring ways to enhance access, quality, and sustainability of palliative and end of life care for all ages, this is a pivotal moment for the government to take action and ensure the plan delivers for seriously ill children and their families.

Tackling workforce shortages

• DHSC should make sure that, using NHS England’s (NHSE) service specification for specialist palliative and end of life care services: children and young people, a plan is developed to use the existing children’s palliative care workforce as equitably as possible; this should include organising services into NHS-commissioned children’s palliative care operational delivery networks (ODNs), as is the case for neonatal critical care.
• DHSC should aspire to have 40-60 specialist paediatric palliative medicine consultants employed across the UK; to do so, it should increase spending on specialist paediatric palliative medicine GRID and SPIN training by £2.4 million per year, proportionate to an expansion in the overall medical education and training budget.
• DHSC should aspire for the NHS to employ 4,960 community children’s nurses (CCNs) across England. We join the Royal College of Nursing (RCN) in asking for the government to set nurse-to-patient ratios for all health and care settings, and to ensure these are measured and reported on.

Addressing funding shortfalls

• The government should commit to multi-year long-term NHS funding for the health elements of children’s hospice and palliative care in England that fills the £310 million gap that we have identified to sustain lifeline services provided in hospitals, the community and in children’s hospices.
• This funding should be scaled-up alongside investment to increase the number of professionals with the skills and experience to meet the needs of seriously ill children.
• DHSC should conduct its own modelling to determine how much local NHS bodies should spend on the health elements of children’s hospice and palliative care—and then hold them to account for the extent to which they spend money for this purpose.

Improving commissioning, leadership and accountability

• The government should examine whether children’s palliative care would be more effectively commissioned at a national or regional level to create economies of scale.
• DHSC should consider a model in which the seven new offices of pan ICB commissioning commission specialist paediatric palliative care equitably and sustainably as defined in the specialist tier of NHSE’s children’s palliative care service specification.
• DHSC should direct ICBs to work with neighbouring ICBs in their region to commission targeted and universal tiers of children’s palliative care as set out in NHSE’s service specification.
• DHSC should use the offices of pan ICB commissioning to regularly monitor whether ICBs are commissioning children’s palliative care effectively, and to hold them to account if they fail to do so.

Time is short for seriously ill children and their families. It is vital that the UK Government commits to this action to ensure they can make the most of every moment that they have left together.