Alexandra Norrish
Managing Director, Children’s Hospital Alliance
Palliative care for children and families plays a vital role in supporting those with life-limiting conditions. But services – delivered by hospitals, hospices and community services – are under strain.
Supporting every family
A held hand, a listening ear, support for siblings – every child and every family deserve dignity, comfort and compassion, especially those facing life-limiting conditions.
Unlike adult palliative care, which often focuses on end-of-life support, paediatric palliative care aims to provide a holistic approach from diagnosis through to bereavement, often supporting families for many years.
One mum describes the impact: “We were able to give Ethan a life filled with love, and we hold on tightly to the beautiful moments we shared as a family.”
The wide-ranging needs of CYP should be met by a multidisciplinary team, including paediatricians, nurses, social workers, pharmacy, therapists, chaplains, psychological support and respite care.
CYP with complex health conditions may require increased support such as 24/7 medical care, which can place families under enormous pressure, emotionally, financially and socially.
It is time to protect and invest
in care that supports every
family – and every childhood.
A fragile service
Despite its importance, paediatric palliative care services are fragile, with increasing numbers needing support – there are around 99,000 seriously ill children in the UK.
The Children’s Hospital Alliance (CHA) has identified inequalities in access and care, with many services unable to offer the support families desperately need, leading to families navigating a complex system by themselves. This inconsistency is driven by fragmented funding models, a shortage of specialist staff and limited training pathways.
Only a handful of services receive recurrent funding from the NHS, and many rely on charitable funding. This approach hampers long-term planning and results in postcode lotteries in care, worsening health inequalities, particularly across disadvantaged communities.
At the same time, workforce pressures are growing. Many consultants are nearing retirement and without a national training strategy, future recruitment is uncertain. Staff often work out of goodwill, but this is not sustainable.
A service fit for the future
The CHA wants to see a more consistent approach to funding across all settings, expanded training opportunities and improved national data collection to support service planning.
It is time to protect and invest in care that supports every family – and every childhood.
