When the Chancellor delivers the Budget on Wednesday 28 October, families of children with serious illnesses will be hoping the government backs up its commitment to improve palliative and end of life care with the investment needed to turn ambition into reality.
At Together for Short Lives, we hear from families every day who rely on children’s palliative care services to help them make the most of every precious moment together. These services provide expert clinical care, symptom management, short breaks, emotional support and bereavement care, supporting families through the most challenging times.
Yet demand is growing, children’s needs are becoming increasingly complex and funding is failing to keep pace. As a result, too many families still face a postcode lottery when it comes to accessing the care and support they need. This is simply unacceptable.
Children’s palliative care is different – and needs specific, targeted action
Ahead of the Budget, we support calls from Marie Curie, Sue Ryder and Hospice UK for a £200 million annual transformation fund to reform and improve palliative and end of life care services for adults in England. Their campaign rightly highlights the urgent need for sustained investment in care closer to home and recognises that high-quality palliative care benefits patients, families and the wider health system.
But children with serious illnesses and their families have distinct needs. The conditions which mean children need palliative care are often rare, require long-term use of life-sustaining technology, and affect a small number of children who are still developing physically, emotionally and cognitively.
Care must support children's rights and wellbeing, including opportunities to play, learn and take part in family life.
Too often, these children are overlooked in a palliative care system focused on older adults at the end of their lives. We are very concerned that the forthcoming Modern Service Framework (MSF) for Palliative and End of Life Care will not adequately address their needs. While broader investment in palliative and end of life care is important, specific, urgent action is needed to ensure that children’s palliative care services in England are sustainably funded and equipped to meet growing demand.
That is why we are urging the Treasury to commit to long-term, sustainable investment in children’s palliative care now. Every baby, child and young person with a life-shortening or life-threatening condition – or who is living with severe medical complexity – should be able to access high-quality care wherever they live, whether that is at home, in hospital or in a children’s hospice.
This is about economics, not just quality of care
This investment must include fair and sustainable funding that fills the £310 million annual gap in NHS funding for children’s palliative care. 100% of the costs incurred by children’s hospices in providing clinical care, that would otherwise fall to the NHS, should be covered by the state.
When introduced at the right time, children’s palliative care prevents pressure on hospitals, supports families to care for their children at home and helps them to make the most of their lives together. This means vital resources can be freed up to support others.
Skilled and experienced professionals are key
The Budget should also bring about investment in the workforce needed to care for children with serious illnesses. Without enough community children’s nurses, specialist paediatric palliative medicine consultants and other professionals, families will continue to struggle to access the support they need when and where they need it. Ministers should increase spending on specialist paediatric palliative medicine GRID and SPIN training by £2.4 million per year.
Rising costs are hitting these families hardest
Alongside investment in services, the government must address the financial pressures many families face. The news that the government is ending the Carer’s Allowance ‘cliff edge’, so unpaid carers no longer lose their entire allowance simply for earning a penny over the Weekly Earnings Limit, is very welcome. But much more is needed.
Energy costs are a major concern for households caring for children with complex health conditions. Families often have no choice but to use large amounts of electricity to power medical equipment, maintain safe temperatures or run specialist devices around the clock. These are essential costs, not nice-to-haves.
We want the UK Government to explore introducing social energy tariffs as a long-term solution for households with high energy usage due to disability. We also want better access to rebate and support schemes so that families of children and young people who need palliative care are not left paying the additional costs of running essential medical equipment.
The Chancellor must act now
The UK Government has repeatedly said it aims to improve palliative and end of life care through the forthcoming MSF for Palliative and End of Life Care. The Prime Minister has spoken about fixing broken hospice funding. Now is the moment to support those ambitions with meaningful investment.
This Budget presents an opportunity to do just that. By funding services, investing in the workforce and helping families meet unavoidable energy costs, ministers can ensure that every child with a serious illness and every family receives support they can depend on.