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A crisis in palliative care for children

News and comment

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

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  1. This is sadly not unsurprising news, but should be. 25 years ago, when I was seeking support for my daughter (never hoped to get support for the rest of the family devastated by her diagnosis, and the unknown future before us all), I thought I had a fight on, as did other members of ACT, but apparently no-one listened to the voices of parents or those providing specialist services in education, health and social services, and despite the comprehensive, comprehensible clear evidence based guidance issued by ACT (before its amalgamation to form TFSL) apparently no-one seems willing to revisit this issue. I seem to have managed to negotiate the best arrangement available for my daughter (firstly in specialist education locally with support at home, then later in specialist residential care). Briefly, her needs are met. Didn't Gandhi say something about the measure of a country's civilisation is expressed by the way it treats the disadvantaged and vulnerable? Shame on succeeding governments for ignoring the huge amount of research, development, teaching, staff training and expectation of consideration for those who need support in their daily lives

    27 February, 2018
    Sheila Barton
  2. All children should have access to and be referred to a palliative care service. I volunteer in Robin House and see the wonderful work they do, no child be should be scared or have to go through it without this much needed service. CHAS offers professional, physical, psychosocial and spiritual help to the whole family, parents, siblings and other close family when they need it most. All staff and volunteers are compassionate, caring and have great dignity, respect and are committed to doing their best for everyone. Robin House is such a happy place and in sad times it is a calm serene environment. I feel this is what the children and their loved ones need most.

    27 February, 2018