The majority of children in England with life-shortening conditions, and their families, are being short changed or ignored, our recent survey has found. There are 40,000 children and young people with life-shortening conditions in England, and the number is rising. Many of these children have conditions that are complex and unpredictable and need specialist children’s palliative care.
Together for Short Lives is calling on the government and commissioners to work with them to address this shortfall and better plan and fund vital services for these seriously ill children, young people and their families.
The findings have been uncovered following a series of freedom of information (FOI) requests which we made to local authorities and NHS clinical commissioning groups (CCGs) in England during April 2016. The FOIs sought to establish how well these organisations are planning, funding and monitoring (a process known as ‘commissioning’) care for children with life-shortening conditions.
We have rated the councils and CCGs by the different aspects of the care needed by children with life-shortening conditions, including end of life care, short breaks and bereavement care. The ratings also take into account whether they commission vital local services for these children, including community children’s nurses, children’s hospices and specialist medical care. For the first time, the public can see how their local councils and CCGs are performing.
The findings show that most local authorities are failing these children:
- A staggering 4 in 5 (81%) councils are failing to plan and fund palliative care for children and young people
- Nearly half (49%) have received the charity’s zero or one-star rating for children’s palliative care
- Only 10 (7%) achieved the maximum of five stars
- Local authorities have a legal duty to provide short breaks for disabled children yet still around 1 in 7 (14%) are failing to commission these services
Overall CCGs performed better than local authorities. 120 (65%) of CCGs received a four or five-star rating with the majority 127 (93%) of CCGs stating that they commission children’s palliative care. However, too few were able to identify exactly how much funding was spent on children and young people with life-shortening conditions. Despite evidence of some good practice, the overall picture is inconsistent:
- More than a quarter (27%) of CCGs are failing to commission community children’s nursing out of hours, meaning that too many children with life-shortening conditions may have to be admitted to hospital if their health deteriorates during evenings and weekends – placing further unnecessary cost and burden on hospitals and families.
- Nearly 1 in 5 (17%) of CCGs do not commission children’s hospices. 4% (7 CCGs) refuse to commission children’s hospices to provide care because they are charities – despite the government and NHS England emphasising the important role of charities generally in providing health and social care services. Local authorities and CCGs have been legally obliged to jointly commission services for children with special educational needs and disabilities (SEND), including those with life-shortening conditions, since the introduction of the Children and Families Act 2014.
- Alarmingly there appears to be a responsibility vacuum with a number of CCGs confused about what they should be doing to support care for children with life-shortening conditions. Six (4%) wrongly say that only NHS England is the commissioning body for all children’s palliative care.
Commenting on the findings, Barbara Gelb OBE, Chief Executive of Together for Short Lives, said:
“These findings show that, despite some good examples, the overall approach to children’s palliative care is at best inconsistent and at worst typified by ignorance. It’s a postcode lottery, with many children and young people being denied the support they need.
“We already know that children’s hospices in England receive on average only 10% of their funding through CCGs, far less than the 30% adult hospices receive[v]. Yet children’s hospice services provide vital lifeline care that saves the NHS millions.
“This survey starkly reveals the shortfalls, whilst also recognising those instances where CCGs and local councils are getting it right. We need to see many more such examples and I make a personal plea to health and social care commissioners across England to work with us to better plan and fund lifeline services for children with life-shortening conditions. The public overwhelmingly supports more funding to help these children and I call on the government and NHS England to respond to this by writing to CCGs and local authorities to urge that they now commission care for these children and young people who frankly don’t have any time to wait.”
NB. Since this report was published in 2016, the results have been superseded by our more recent findings in 2017 – you can find out more about this research in the policy section of our website. If you are interested in accessing the full 2016 report or data set, pleased contact James Cooper for more details.
Hearing the news that your child has a life-shortening condition and is likely to die young is completely devastating. For tens of thousands of families in the UK this is the reality. These children have very complex and unpredictable conditions and often need round the clock care, seven days a week.
Together for Short Lives is a UK wide charity that, together with our members, speaks out for all children and young people who are expected to have short lives. We are here to help children and their families to access specialist children’s palliative care services when and where they need it. We provide information so families know where to go for support and have the help they need to make the right choices about their child’s care. Together for Short Lives supports all the professionals, children’s palliative care services and children’s hospices that deliver lifeline care to children and families across the UK.
Together with everyone who provides care and support to these children and families, we are here to help them have as fulfilling lives as possible and the very best care at the end of life. We can’t change the diagnosis, but we can help children and families make the most of their time together.
Together for Short Lives has calculated its star rating of CCGs and local authorities based on the number of ‘yes’ answers which they have given to the questions we asked them. The more ‘yes’ answers given, the higher their rating:
- 0% of ‘yes’ answers = 0 stars
- 1 – 20% = one star
- 21% – 40% = two stars
- 41% – 60% = three stars
- 61% – 80% = four stars
- 81% – 100% = five stars
Please note that areas which did not respond to our information requests have no rating. These areas are unshaded on the maps. If you would are a local authority or CCG and would like to update this data please contact email@example.com
We have not included the answers to our overarching question ‘Do you commission palliative care for children and young people with life-shortening conditions between the ages of 0 and 25’ in our rating calculation. This is because the questions which we do take into account seeks to explore whether CCGs and local authorities are commissioning the different elements which comprise children’s palliative care. We want to show cases where these organisations are not actually commissioning children’s palliative care when they are claiming to do so – and, conversely, if they are actually commissioning children’s palliative care when they think they are not. Our results have found that both scenarios are occurring. This could be because some commissioners do not understand what the term ‘children’s palliative care’ means. By publishing the results of our survey, we hope that CCGs and local authorities will better understand what children’s palliative care is and what their role in commissioning it is.
It is for this reason that Together for Short Lives has been able to give a star rating to CCGs and local authorities who have told us that they do not commission children’s palliative care.
In total, 187 (88%) CCGs and 144 (93%) local authorities provided some or all of the answers to the questions which we used in calculating the star rating.
Together for Short Lives has produced two unique interactive maps which allow the public to see how their clinical commissioning group and local authority is performing with a new rating system.
Hospice UK and Together for Short Lives, 2015. Commissioning and statutory funding arrangements for hospices in England: survey results 2015. [Accessed 17 May 2016]. This survey told us that children’s hospices receive on average 10% of their funding through CCGs and adult hospice receive 30%.
Together for Short Lives’ resource ‘Jointly Commissioning Palliative Care for Children and Young People’ is designed to support CCGs and local authorities in England to effectively commission palliative care for children and young people aged 0–25. Produced as part of our Department for Education-funded special educational needs and disability (SEND) project, our resource also supports health and wellbeing boards to understand their role in the commissioning process. It can be downloaded here
A survey of 1,682 adults in England conducted by YouGov on behalf of Together for Short Lives on 11 and 12 May 2016 has shown that:
- a survey carried out by YouGov for Together for Short Lives looked at public understanding of children’s hospice funding in England
- 81% of the public think that children’s hospices receive too little funding from statutory sources
- the public think that children’s hospices receive 38% of their funding from statutory sources – in reality they only receive 21%
- the public think that children’s hospices should receive more statutory funding (73%, of their total funding).