Possible vast underestimation of the number of children with palliative care needs in the UK

Categories: Policy.

The latest newsletter from Together for Short Lives features a letter from their Chief Executive, Barbara Gelb OBE, indicating that a potential crisis situation in palliative care for children in the United Kingdom may be ahead. The letter calls for people to ‘wake up’ to the potential that there has been an underestimation of the possibly staggering number of children in the UK with palliative care needs. 

The letter, which can also be found on their website, is reproduced in full below:

These children have the weakest voice, their voice is not heard, they do not influence elections.

As we wake up to a new year we also need to wake up to the potential of a crisis in palliative care for children.

A recent report, Children in Scotland requiring Palliative Care, based on a study by University of York, showed a 50% increase in the number of children and young people with life-shortening conditions in Scotland over a ten-year period.

This is a dramatic increase and, if this increase has also occurred across the UK, it suggests that current estimates of 49,000 children with life-shortening conditions could be a substantial underestimate. It suggests that there are a staggering number of children whose needs are not being budgeted for or recognised.

The numbers are in the main increasing because of advances in medical science; a good news story. But it’s marred by the crisis in public funding. Families continue to lose their daily battles for the care they need and services, including children’s palliative care charities, are under growing pressure to support the 24/7 care needs of these children.

Together for Short Lives estimates that the UK cost of children’s palliative care is around £200 million a year and at least half of these funds come from charitable sources. The £11million Government grant to England’s children’s hospices is a critical source of funding, but its future certainty is far from nailed. And the lack of join up between budgets for adult services and those for children’s services means that adult hospices get 30% of their funding from statutory sources and clinical groups and children’s hospices only get an average of 11%.

This sorry state of affairs means that charities depend hugely on fundraising and public donations. This is why this campaign with The Independent is vital and timely.

Yes, it’s about funding, but it’s also about deepening understanding of the scale of need. That’s why the Louis Dundas Centre’s work is so pivotal -we must continue to invest in research and education and our understanding of children’s palliative care. It is imperative for those commissioning health, and social care to understand the number and needs of children with life-shortening conditions locally. Without this information how can informed decisions around budgets and support be made?


Barbara Gelb OBE


Chief Executive of Together for Short Lives

To learn more about Together for Short Lives please visit their website at www.togetherforshortlives.org.uk

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