Leading UK children’s palliative care charity Together for Short Lives is urging MPs to maintain their focus on palliative care despite the Terminally Ill Adults (End of Life) Bill falling at second reading stage in the House of Commons.
A previous report we published identified huge differences across the UK in how children’s palliative care is planned, funded and provided.
Of particular concern is children and families’ access to end of life care at home, 24 hours a day, seven days a week, provided by nurses and supported by advice from consultant paediatricians specially trained in paediatric palliative medicine.
We found that just 31% of integrated care boards (ICBs) have a service specification or similar evidence requiring services to provide 24/7 end of life care at home which meets this standard. The charity has identified three main factors driving this postcode lottery:
- funding gaps;
- workforce shortages;
- and a lack of leadership and accountability from the UK and devolved governments.
For example, in England alone, the gap in NHS children’s palliative care funding across hospital, community and children’s hospice services in England is £310 million.
However we feel about the outcome of today’s vote, we should all welcome the focus on palliative care that the recent public debate on assisted dying has led to. As a result, many of us have a better understanding of what palliative care is, what it can achieve – and the unacceptable postcode lottery people face in accessing it.
Nick Carroll, Chief Executive of Together for Short Lives
Nick added: “This inequality of access means that many families of children with serious illness are not getting the palliative and end of life care they need because of where they live. This is care that is clearly set out in standards, guidance and even the law.
“MPs must not waste the energy and focus they have given to palliative care. I call on them to press the UK’s governments to fill the children’s palliative care funding gap, invest in education and training and hold local NHS bodies and councils to account. Failure to act will not only continue to put added strain on struggling families but will also continue to waste NHS money, at a time when it cannot afford to do so, through avoidable hospital admissions.”