Thursday’s Autumn Statement could be the defining moment in Rishi Sunak’s fledgling premiership. But the spending decisions he makes could mean a lifetime of difference for seriously ill children and their families.
James Cooper, our Head of Public Affairs and Policy, sets out the action we would like the Chancellor of the Exchequer to take.
1. Secure and affordable energy supplies
This winter many families caring for a seriously ill child who are dependent on equipment to stay alive are struggling to pay their rising energy bills. No family should have to face difficult choices between feeding their family or heating their home.
For many seriously ill children, their life-saving equipment helps them to breathe. There are 3,000 children in the UK who need a ventilator, and their families are facing soaring debt to keep machines running. Families face unbearable decisions of whether they can continue to care for their child at home or transfer them to hospital when their energy bills become unaffordable.
We are urging the Chancellor to:
- provide an energy assistance payment for families of serious ill children to replace or supplement the inconsistent access to local NHS medical grants and reimbursement schemes
- double the £150 disability payment to reflect their higher household and energy costs
- uprate benefits urgently in line with current inflation rates
- extend the Energy Price Guarantee for families of seriously ill children – and the Energy Bill Relief Scheme for children’s hospice and palliative care charities – beyond March 2023
- explore the idea of social tariffs as a long-term solution to reducing energy bills for household with high energy usage due to disability.
2. Overcoming the workforce crisis
The children’s palliative care sector is facing a workforce crisis: there are too few professionals with the skills and experience needed to provide children’s palliative care in hospitals, children’s hospices and in the community.
There are too few community children’s nurses (CCNs) employed by the NHS: The Royal College of Nursing recommended 5,500 CCNs employed and working in England as safe staffing levels, however there are only 700 CCNs employed by the NHS.
There are too few specialist children’s palliative care consultants: The Royal College of Paediatrics and Child Health (RCPCH) estimates that 40-60 specialist children’s palliative care consultants are needed in the UK. Worryingly, there are currently only 18 in England. This suggests a significant deficit of 22-42 consultants.
The growing vacancy rate in the non-medical care and support vacancy rate in children’s hospice charities is higher than in the NHS – and posts are increasingly difficult to fill: in 2022, the average vacancy rate for roles equivalent to Agenda for Change bands 5-9 inclusive is over 18%, compared to 12% in 2019 and 10% in 2015.
We are calling on the Chancellor to settle a health workforce education and training budget with the NHS to include funding to expand the children’s palliative care workforce. This should include an aspiration to increase spending on specialist paediatric palliative medicine GRID and SPIN training to £2.26million per year, proportionate to an expansion in the overall medical education and training budget.
The workforce plan should also include securing children’s nurses with the skills and experience to provide palliative care to children in hospitals, children’s hospices and at home.
3. Sustainable funding
We have calculated that NHS should spend approximately £385million every year to meet the NICE children’s palliative care standards.
Yet it will be spending only £84million every year on children’s palliative care by 2023/24. We therefore estimate that there will be a £301million gap in NHS spending on children’s palliative care in 2023/24.
Children’s hospices are heavily reliant on the annual Children’s Hospice Grant, the grant paid directly to children’s hospices by NHS England to provide sustainable care and support to seriously ill children and young people. The total grant for the whole of England will increase to £25 million next year, which children’s hospices are incredibly grateful for.
However, NHS England will not commit to directly providing the grant to children’s hospices beyond 2023/24. As inflation soars, children’s hospices expect to spend more during 2022/23 meeting the increasingly complex needs of the children and families they care for.
Children’s hospices are already warning that if they were unable to access the grant in 2024/25 and beyond, they would be forced to cut vital care and support for children and families:
- nearly one in five (18%) would cut end of life care
- over a quarter (27%) would cut symptom management services
- nearly two thirds (64%) would cut short breaks for respite.
We are asking the Chancellor to make sure that the NHS invests an additional £301million in children’s palliative care in England every year to meet the funding gap for services. The NHS should also maintain existing funding streams for the long term, including children’s palliative care match funding and the Children’s Hospice Grant beyond 2023/24.
We understand the acute pressure on the public finances. But without these key investments, too many families will be forced to use expensive, unplanned emergency services as they reach crisis point.
Time is short for seriously ill children. The decisions the government make could define the help they receive for the rest of their lives. The Prime Minister and Chancellor must act urgently to ensure they receive the care and support they need to make the most of the time they have.
