THE BLOG

Families Of Seriously-Ill Children Feeling The Strain Of Funding Cuts

22/11/2016 08:48
Ed Freeman via Getty Images

As the Chancellor rises to his feet to give his much-anticipated Autumn Statement tomorrow, there will be much jeering and cheering from all sides of the House of Commons. In the detail of the important announcements that will be made on Wednesday there is a danger that one voice won't be heard. The voice of children and young people with life-shortening conditions.

There are 40,000 children and young people with life-shortening conditions across England. That's the equivalent of one child in every school who is unlikely to live into adulthood. These children are the most vulnerable in society, they have the weakest voice, and it is clear from the survey results Together for Short Lives publishes today, that their voice is either not heard or is being ignored.

Our joint survey with Hospice UK, makes grim and uncomfortable reading. And as a society we should be deeply disturbed by what it says. It says that funding for children's charities, including children's hospices, from local authorities has dropped by a staggering 61% in the past year. This means that, despite a legal duty, funding to support important services like respite support through short breaks is being cut. The knock-on effect of a reduction in these services is devastating; fragmenting and destroying families under severe stress and strain, who depend on that support to help them simply cope with the demands of providing 24/7 care for their much loved, but seriously ill, children.

This is but one example. The health and social care and support provided by children's palliative care charities at home or in hospice is vital. And the number of children with life-shortening conditions who need their support is growing and the complexity and cost of their care is increasing. Yet despite this increase in need, funding to support these children, young people and families is decreasing. Overall funding for children's palliative care charities is on a downward trajectory. State funding now only contributes on average to just 22% of their costs. This compares to 33% for adult hospices.

Children's palliative care charities help take the pressure off an already overloaded NHS. The reduction in funding to children's hospices and other children's palliative care charities means that these organisations are having to make difficult decisions to reduce services and the necessary holistic care these children and families need. The net impact is multiple - more time spent in A&E, more time spent occupying hospital beds and more time and money wasted when many of these children and families, sadly, do not have time on their side. We are facing a funding crisis.

I believe this is a moral outrage and I think the public, who do so much to support children's palliative care charities, would agree. A recent survey by Together for Short Lives found that 81% of the public think that children's hospices receive too little funding from statutory sources - when asked they think children's hospices should receive 73% of their funding from statutory sources.

There are beacons of hope and precedent for positive change. The Scottish Government recently announced £30 million of funding over five years to Children's Hospice Association Scotland. This will make a huge difference to children with life-shortening conditions in Scotland. We want that same moral and monetary commitment to be made by respective governments in England, Northern Ireland and Wales.

I encourage readers to think about your own child or children you know. These conditions can sadly strike any family. At a very minimum you would expect the state to play a key role in supporting them in time of serious illness, you would want to know that help and support was there for you when you needed it. You would want to know that, despite life-limiting or life-threatening illness, you were able to minimise pain for your child, provide a quality of life and, sadly, death for the short time you were together. All we are asking is that appropriate funding is made available so that we do not fail these children, we do not fail these families and we make sure that services that are there, built on compassion, are funded appropriately so that they can continue to do that.

I encourage readers to read our report, and hope that the Chancellor also has the opportunity to do the same, so we can ensure that we can encourage the Prime Minister to make good on her commitment to support people for whom life can be a struggle, to gives a fair chance to those who are just getting by - while still helping those who are even more disadvantaged. I cannot think of a more deserving group than those we, and our members, are here to support.

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