Making the 10 Year Health Plan a reality for seriously ill children in England

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 in England experience palliative care that is disjointed, uncoordinated and which does not meet national standards.

Recently, the UK Government has announced that a new Modern Service Framework (MSF) is being developed for all-age palliative and end of life care. The Minister of State for Care, Stephen Kinnock, has confirmed that the MSF will be aligned with the 10-Year Health Plan, and will include five core components:

1. Agreeing an aspirational long-term outcome goal — one that is focused, measurable and time-bound.
2. Identifying the best evidence interventions that will support progress towards the goal.
3. Outlining how the government will support consistent uptake of those interventions by ICBs, clinicians and providers, with a focus on reducing unwarranted variation.
4. Highlighting what innovation has the highest potential in the next 10 years.
5. Setting out how the government will work with others to develop, adopt and spread innovation in those domains, including making the shift from analogue to digital.

The development of an MSF is a pivotal moment to deliver meaningful change for seriously ill children and their families. However, it will only solve the challenges in accessing palliative care if it is implemented at local and regional level. To achieve this, it will need to be supported by action that:

• Tackles workforce shortages
• Addresses funding shortfalls, including the £310 million gap in NHS funding
• Improves commissioning, leadership and accountability

Our recommendations

Tackling workforce shortages

• The Department of Health and Social Care (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.