Martin House Children’s Hospice chief executive warns that a cultural refusal to talk about dying children is starving the sector of vital statutory funding.
For Clair Holdsworth, chief executive of Martin House Children’s Hospice, the crisis facing paediatric palliative care is as much a cultural failure as it is a financial one. Although the government has recently pledged more money, while the adult hospice sector commands widespread public advocacy and established statutory backing, providers caring for the UK’s most complex, life-limited children are fighting a quiet, desperate battle against a system built on avoidance.
After a career spanning more than 15 years in the sector, Holdsworth is issuing a stark warning: skyrocketing inflationary costs, fragmented NHS structures and a deep-seated societal denial of child mortality are forcing providers to risk cutting frontline clinical teams.
Here, she talks to Healthcare Today about why the current voluntary funding model is fundamentally unsustainable, the needs of the wider family and the importance of pushing into the community.
Children’s palliative care rarely gets the same policy attention as adult services. What are policymakers missing?
The fundamental challenge facing children’s palliative care stems from a societal reluctance to confront the reality of younger mortality, which directly impacts everything from public conversation to statutory funding.
The prevalence of children who die is, thankfully, significantly lower than that of adults. Consequently, when society does discuss death – something we are notoriously poor at doing in general – the focus is almost exclusively on older adults.
This difference in prevalence creates a significant disparity in advocacy. We see this reflected in recent legislative debates as well; for instance, the assisted dying bill was strictly focused on individuals over the age of 18.
This adult-centric focus is likely the reason why statutory funding has historically favoured adult services over children’s care. Recent data from Hospice UK indicates that nearly 30% of adult hospice funding comes from statutory sources, compared to just 20% for children’s services. While that gap has narrowed over the last ten to 15 years, the disparity remains.
While there is a growing acceptance of the vital need for children’s palliative care, we are still fighting a cultural aversion to the subject. For providers like us, this presents a direct operational challenge. It remains an incredibly difficult conversation to initiate – not just for families, but for medical and care professionals as well.
We have written a great deal about declining government funding for hospices. How much of a problem is this?
The financial pressures on the hospice sector have reached a tipping point, where severe inflationary demands and unsubsidised operational hikes are forcing charities to make agonising decisions regarding frontline clinical staff.
At Martin House, we have been incredibly fortunate in many respects. Our running costs are heavily underpinned by the remarkable generosity of the people of Yorkshire. Yet despite that local support, the cracks are undeniably beginning to show. Across the sector, 60% of adult hospices and a third of children’s hospices are currently cutting frontline staff.
We are running a deficit budget this year, a situation largely dictated by inflation. To secure a viable workforce, we must effectively compete with the NHS. We have to try to align our pay structures with NHS bands, otherwise recruiting and retaining skilled staff becomes an impossible task. Compounding this, skyrocketing energy bills have offered no relief. Furthermore, when the recent National Insurance hikes were implemented, the NHS received statutory financial support to offset the extra costs, but hospices were completely excluded. For Martin House alone, that policy gap landed us with an additional burden of just under £200,000 in a single year. To put that in perspective, our annual running costs have now risen to over £12 million.
Ultimately, if we are forced to find savings, the only way to do so is by reducing our clinical provision. Several hospices within Yorkshire have had to take that drastic step recently, and it directly and undeniably impacts frontline service provision.
“The pressure on modern families today is immense, compounded by contemporary economic and social demands.”
How has family need changed? What do families need now that they didn’t need 10 or 15 years ago?
The modern landscape of paediatric palliative care has been radically transformed by medical advancements; children with profound clinical complexities are living significantly longer, placing an unprecedented, high-dependency care burden on families navigating an increasingly stressful economic and social environment.
There is a fundamental misconception within society that palliative care is strictly synonymous with end-of-life care. End-of-life care is simply one component of a much broader palliative framework that establishes a supportive treatment intent from the very beginning.
Because modern medicine is so fabulous, children are living much longer with far more complex conditions. This medical shift has altered our scope entirely; we actually have to decline some conditions now because those specific children are now expected to survive well into adulthood.
The pressure on modern families today is immense, compounded by contemporary economic and social demands. In an era where flexible working is common, parents are already struggling to balance a career with standard childcare. When you throw the care of a highly complex child into that mix, the reality is staggering. Wider systemic factors add further weight to this burden. Suitable housing is increasingly difficult for families to secure, and multi-generational living has become much more common.
How do you balance clinical care with emotional and social support, not just for the child, but for parents and siblings?
Children’s hospice provision is never strictly about an illness, a diagnosis, or a medical condition, nor is it ever just about the child in isolation.
We do an immense amount of work with siblings. When a child has profound, complex medical needs, their siblings can naturally feel a bit pushed out as parental attention is dominated by clinical demands. For many of these brothers and sisters, their home life feels completely normal until they transition to secondary school and suddenly realise just how different their family dynamic is compared to their peers. We support these children actively while their brother or sister is on our caseload, and we continue that vital work through bereavement support if they lose them. The same dedicated care extends to parents and grandparents through tailored support groups.
The weight of responsibility placed on these parents is extraordinary. We are asking everyday families to manage clinical interventions that general practitioners and community pharmacists would normally approach with extreme caution.
This is a world away from adult hospice provision in many ways, specifically designed to wrap around the entire family and support them through a much more intense, protracted clinical journey.
“Culturally, some communities carry an expectation that families must cope entirely on their own… We are working hard to shift that narrative.”
Do you worry about inequity of access?
Expanding our reach has been a vital strategic priority for us.
When you look at the demographics of Yorkshire, it is incredibly broad. We cover vast rural areas alongside major built-up cities like Leeds and Bradford, each presenting entirely different educational and cultural barriers. Statistically, there is robust evidence linking lower socioeconomic status with a higher prevalence of life-shortening conditions in children. To address this directly, we have just secured our first National Lottery funding to launch a community liaison officer initiative. These officers will go directly into underserved areas to break down barriers.
Culturally, some communities carry an expectation that families must cope entirely on their own. We are working hard to shift that narrative, emphasising the true definition of palliative care and showing families what hospice support can actually offer them.
To make our care accessible, we are moving more of our services directly out into the community. For example, we have set up “Chai and Chat” sessions, which have been a brilliant way of connecting with South Asian mothers in specific urban areas where the prevalence of these conditions is statistically higher, but who might otherwise be reluctant to come forward.
We must continually adapt. Today, approximately 40% of our caseload at Martin House is from South Asian backgrounds. This is a stark contrast to adult hospice provision, which still frequently battles with an overwhelmingly white, middle-class demographic.
If you had one policy lever to pull tomorrow, what would it be?
The future of sustainable paediatric palliative care depends on central government ensuring that funding strictly follows policy, coupled with a systemic commitment to workforce education, because the clinical and emotional window to get a child’s end-of-life care right opens only once.
Ultimately, the necessary policies are almost where they need to be. What we need now is to ensure that funding is explicitly attached to these mandates, followed through, and properly monitored by central government. That accountability would make the single biggest difference to palliative care provision nationwide.