The 40,000 babies, children and young people in England with life-limiting and life-threatening conditions have some of the most complex health needs - and rely on the NHS perhaps more than any other group of children. But if we get care wrong for these children and their families, they can experience profoundly poor outcomes: pain, distressing symptoms, anxiety, lack of choice and control - and exhausted parents who, without a break from the 24/7 care they provide, will eventually reach a physical or mental crisis point. As a result, many of these children and their families need multiple, unplanned and costly admissions to hospital.
With a £20 billion birthday present for the NHS, a new 10-year plan on the cards, and a promise from NHS England Chief Executive Simon Stevens for “a renewed focus on children’s services, and prevention and inequality as they affect children”, it is time for the government to get serious about proper funding for children’s palliative care.
Children’s palliative care which is well planned, funded and provided across hospitals, children’s hospices and in children’s homes by community teams, offers a lifeline to seriously ill children and their families - and has been proven by NICE to achieve cost-savings for the state because of the reductions in unplanned care that it can deliver. Investing just £12.7million would release non-cash savings worth £34.7 million back into the NHS in England.
So it is not only right that the government contributes more to the costs incurred by palliative care charities: it makes financial sense. Even more importantly, it means seriously ill children and their families have a better experience of care.
As the number of children with life-limiting conditions increases, demand for children’s palliative care is growing. But the funding for services hasn’t kept pace with this demand and is a postcode lottery. Whether or not families can access the care they need depends on where they live.
For example, children’s hospices are charities that only receive about 20% of their funding from the state, far less than adult hospices. On average, the overall amount of statutory funding they receive has been falling year on year since 2013. This real-terms cut in funding has already had a negative impact at the majority of children’s hospices.
This is why Together for Short Lives has launched a petition urging the government to use some of the NHS funding boost to:
• Increase the children’s hospice grant to £25 million per year. This would cover 14% of the cost of the clinical care provided by children’s hospices, equal to the contribution originally made by the Department of Health when the grant was first awarded in 2006.
• Address the funding disparity between children’s and adult hospices. Children’s hospices currently receive only 22% of their funding from statutory sources, compared to 33% in adult hospices.
• Put in place a funded children’s palliative care strategy which makes sure that seriously ill children can access the care and support they need, when and where they need it.
Please sign and share our petition, which we’ll be taking to 10 Downing Street in the autumn, calling on the government to fund, not fail, seriously ill children. If it does so, the government will begin to show that it is serious about an NHS which helps prevent and reduce wholly avoidable health inequalities for children over the next 10 years.
James Cooper is Public Affairs and Policy Manager at UK children’s palliative care charity Together for Short Lives