We are fortunate to live in a country where end of life care is the best in the world.
Like many across the children’s palliative care sector, I’ve spent time reflecting on the Economist Intelligence Unit’s (EIU) Quality of Death Index and what it means for the 49,000 children across the UK with life shortening conditions.
The report itself is focussed on adults, not children, and states: “The lack of comparable data on the provision of such care to children reflects that their needs are too often ignored in this area.” The report continues: “Their [children] needs are diverse because of the widely different age groups, from babies to young people, and the complexity of their conditions demands more sophisticated services.”
So whilst the report is good news for the wider sector and provides public recognition of the skills, sensitivity and hard work of those that work in palliative care we should also guard against complacency.
Whilst the overall picture compares the UK very favourably with other countries, the headlines mask some significant inequalities and inconsistencies in how children’s palliative care is accessed, integrated and supported across the country.
Wider commentary around the report has typically been rather more focussed on end of life care for older people and the challenges of an ageing society. But there are 49,000 children across the UK with life shortening or life limiting conditions whose voice is not being heard in this debate.
That is why I was disappointed to hear the government’s response to the House of Commons Health Select Committee’s inquiry into palliative and end of life care. Following a thorough inquiry, including oral and written evidence from Together for Short Lives, the committee called for the government to set out how everyone can access 24/7 palliative care wherever they need it. However, the government’s response failed to commit to any action which might realise this for children and young people whose needs are complex and different to adults who are receiving palliative care.
As a society, it is vital that we recognise, tragically, that children and young people are living with serious illnesses which will shorten their lives. They also need the highest standard of care at the end of their lives. Together for Short Lives is working with the UK’s governments and statutory bodies to amplify the voice of children with life-limiting conditions and their families. We want to achieve the following five changes to secure the UK’s place as the leading country for palliative care for children as well as adults:
Investment in education and training to increase the number of professionals who have the skills, experience and competencies needed to care for children and young people with life-limiting and life-threatening conditions. For example, we urgently need more community children’s nurses who can provide children’s palliative care when and where children and families want and need it – 24 hours a day, seven days a week.
A fairer and more sustainable statutory funding settlement for children’s palliative care services.
A new statutory duty for all local authorities to fund a range of short breaks to disabled children which backs their existing duty to provide these services; short breaks are a lifeline for children and families – without them, families providing round the clock care for their children can reach breaking point.
Assessments, plans and services which are more integrated around children and families, jointly commissioned by education, health and social care.
Smoother and better planned transitions to adulthood for young people with life-limiting conditions – and better access to palliative care services which are appropriate to young people’s age and developmental stages.
There are opportunities to address some of these challenges. We await new strategies and frameworks for children’s palliative care in Northern Ireland and Scotland, and next year’s refresh of the Welsh Government’s end of life care delivery plan. We also look to the Comprehensive Spending Review to cement and reinforce support for children’s palliative care.
I am proud that adults in the UK can access the best palliative care in the world. Let’s now extend that to children so that we can say that we are the leading country in providing palliative care for everyone.
Barbara Gelb OBE is Chief Executive Officer of Together for Short Lives and has spent her career working to improve care services for children.