I welcome much of the UK Government’s new 10-Year Health Plan for England. But it raises a number of questions which ministers must answer soon if it is to lead to real improvements in access to high quality, sustainable palliative care for seriously ill children and their families.
I am encouraged by much of what the government has set out and firmly support the principle of ensuring care can be accessed closer to home. The plan provides many exciting opportunities to improve the way in which children’s palliative care is planned, funded and provided.
Children’s palliative care is not mentioned
However, I am disappointed that, in a document of more than 160 pages, palliative care for seriously ill children and young people is not specifically referred to once. Children’s palliative care is not a condition – it is an essential part of our health and care system which some of the most vulnerable children and families rely on.
Right now, many families caring for seriously ill children face an uphill battle when it comes to accessing high quality palliative care. Workforce gaps, a lack of funding and failures to properly hold NHS bodies to account are undermining access to – and the quality and sustainabilty of – these lifeline services. The postcode lottery in 24/7 access to end of life care at home for children and young people is a key example.
Together for Short Lives estimates that currently less than a fifth of integrated care boards (ICBs) in England commission services on a formal basis that meet the 24/7 end of life care at home standard. This is driven by significant workforce shortages, a lack of accountability among integrated care boards (ICBs) and a £310 million gap in NHS funding.
Without specific focus in the plan, I worry that local NHS bodies will not give children’s palliative care the priority that seriously ill children need and deserve it to have.
Funding
Looking at funding, the government’s commitment to provide universal access to personal health budgets, for all who would benefit from them by 2035, has the potential to improve choice and control for families of seriously ill children. Year of care payments could also help bring an end to the unsustainable way in which children’s palliative care is funded.
However, I am concerned that funding for children’s palliative care is not specifically addressed in the plan.
To realise their ambitions, I call on ministers to now urgently review children’s palliative care funding in England, fill the £310 million gap in NHS funding and commit to protecting and increasing ringfenced NHS funding for children’s hospices (formerly known as the Children’s Hospice Grant) to £30 million by 2030.
Only by doing so can they make sure that children’s palliative care services across the NHS and voluntary sector are sustainable and able to be part of the bold, community-based health service that ministers envision.
Neighbourhood health centres
I welcome ministers’ decision to state that neighbourhood health centres will provide end of life care in the community, including from professionals working in hospice outreach services, in addition to the thinking they have done about how these services can be contracted. However, questions remain about how palliative care for children will be part of these teams, and how it should be planned and funded.
The small number of children with life-limiting and life-threatening conditions mean that children’s palliative care should be done at a national or regional level to create economies of scale. I am concerned that, through such a hyper-local approach, the government could unintentionally make it harder to deliver the specialist care these children need, and more clarity is needed on this soon. It is vital that through the NHS regions, the government holds integrated care boards to account for the way in which they commission children’s palliative care.
Workforce
Workforce is a significant issue in children’s palliative care, with too few professionals having the skills and experience to deliver it. With a new 10-Year workforce plan on the way and an increased annual budget, the foundations should now be in place to tackle the shortages in the children’s palliative care workforce and address the shortfalls in funding for NHS and third sector services such as children’s hospices. Ministers must grasp this opportunity to end the children’s palliative care workforce crisis.
Joining up care and identifying children as early as possible
Care and support for seriously ill children often represents a maze that families are forced to navigate. I therefore welcome the commitment that people with complex needs will have an agreed care plan by 2027. Access to digital records, through My Children, My Care or My Carer, present real opportunities to reduce the number of times families have to tell their story to get the support they need.
The genomics population health service should also mean that many more babies and children who could benefit from palliative care will be identified and referred for support earlier.
In conclusion
The 10 Year Health Plan provides many opportunities, but also many pressing questions for children’s palliative care in England. It contains laudable ambitions for the long-term, but leaves many pressing questions for seriously ill children, their families and children’s palliative care professionals and services.
Yes, we must look at the structure of the NHS. Yes, we must build a sustainable healthcare system for the next decade. But we cannot avoid the urgent questions that need to be answered in the coming days and weeks – including when and how will funding shortfalls be addressed, how will we hold bodies to account for failing to meet statutory requirements – and how will we ensure that all seriously ill young adults can access high quality palliative care when and where they need it.
It’s not fair or right that access to crucial aspects of children’s palliative care still relies on bake sales, charity shops and parachute jumps.
I urge minsters to work with Together for Short Lives to make sure the voices of seriously ill children, their families and children’s palliative care professionals and services are heard as they implement this landmark plan.
Time is short for seriously ill children. Many will not have 10 years to wait for the government to get this right. They deserve much better.