The Budget delivered by the Chancellor of the Exchequer this afternoon was trailed as one which would mean Britain is ‘fit for the future’ however it represents a missed opportunity to improve palliative care and support for the 49,000+ seriously ill children and their families in the UK.
Together for Short Lives is disappointed that the Chancellor has ignored calls to help families of children with life-limiting or life-threatening conditions and those that work tirelessly to support them. We are disappointed that the Chancellor has not acted on the National Institute for Health and Care Excellence (NICE) recommendation, which shows that investing in children’s palliative care will not only improve the lives of some of the most vulnerable in society but will also save money in the long term. NICE calculates that by investing £12.7 million in implementing their ‘End of life care for children with life-limiting conditions’ guidance, non-cash savings worth £34.7 million would be released back into the NHS in England.
The Budget announced an additional £2.6bn funding for sustainability and transformation partnerships (STPs) ‘to deliver transformation schemes that improve their ability to meet demand for local services’. We are keen to understand more and inform the work of STPs in implementing these schemes, so that local health and social care services can deliver joined up care for children and families.
The Budget did not address the gaps in the nursing workforce in England. We are disappointed that there was nothing to address this as we know that the shortage of children’s nurses is undermining the ability of services to meet increasing demand for care and support for children with life-limiting and life-threatening conditions. We know from our own research that the average nurse vacancy rate at children’s hospices is going up each year. Children’s hospices reported an 11% vacancy rate in 2016, up 1% from the previous year.
In our submission to HM Treasury prior to the Budget, we called for the Chancellor to implement a range of measures to support these families who are all too often just about managing. They need an active government to step in to help them stay resilient, to make sure they do not break down or reach crisis point.
We know that these families are under tremendous strainBarbara Gelb OBE
We called for the government to provide additional funding for children’s palliative care charities and hospices to match the increased demand on these services both in volume and complexity of needs. Currently children’s hospices receive just 22% of their funding from the state while adult hospices receive 33%. We would like the UK Government to follow the example set by the Scottish Government, which has allocated £30million over five years for children’s hospices to achieve parity with funding for adult hospices.
We also asked that the government help to prevent family breakdown and reduce isolation for families. We regularly hear families say that caring for a child with a life-limiting condition can be isolating leading to breakdowns in their relationships and social life. Short breaks are critical in addressing this.
Our Budget submission asked the government to hold an inquiry into children’s social care funding, as too many parents of children with life-limiting and life-threatening conditions are unable to access the short breaks that they need. Since submitting our evidence, we have published research to show that this problem is getting worse with more than one in five (21%) local authorities not commissioning short breaks for these families.
Barbara Gelb OBE, Chief Executive of Together for Short Lives said:
“Sadly, this Budget fails to improve the paucity of support available to seriously ill children and their families across the UK. These families care for their children 24 hours a day, seven days a week and it is right that a civilised society steps in to support them to do so. Shockingly, their voices are not being heard and their needs have not been recognised by this Budget.”
Children with life-limiting and life-threatening conditions rely on a range of services to support and care for them and these services are not receiving the support that they need. Lifeline services such as children’s hospices still receive just a fraction of their costs from the state, despite the crucial role that they play in caring for children and their families.
Barbara Gelb OBE continued:
“We know that these families are under tremendous strain and it is all too common for families to face break down under the pressure of providing around the clock care. Our own research published this month shows that in many areas services for families are not commissioned to provide care out of hours or at weekends. This is not a 9 to 5 job for families – the state must provide support for them when and where they need it.”
You can read what Together for Short Lives called on the Chancellor to implement in the Budget here. We will continue to work with ministers to bring about the reforms necessary to support the 49,000 children who need palliative care across the UK. You can read more about our work to influence policy across the UK here.
In his speech, the Chancellor said ‘”As we invest in our country’s future I have a clear vision of what that Global Britain looks like…A civilised and tolerant place that cares for the vulnerable.”
It is time to make this a reality for the 49,000 children and young people with life limiting conditions and their families in the UK.