Making every seriously ill child count: UK-wide study to highlight the number of children with life-limiting or life-threatening conditions

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  • The way children’s palliative care in the UK is planned and funded is a postcode lottery for children and families.
  • Too little is known about the number of babies, children and young people with life-limiting or life-threatening conditions across the UK, which makes it hard to plan and fund services.
  • A new study being undertaken by a team at the University of York, funded by the True Colours Trust, will highlight the number of children with life-limiting and life-threatening conditions in the UK.

A new research study will give an up to date estimate of the number of babies, children and young people with life-limiting and life-threatening conditions across the UK and will help to predict levels of need in the future. Together for Short Lives, the UK charity for children’s palliative care, secured funding for the research from the True Colours Trust following a consultation with the children’s palliative care sector which identified this as a pressing need. The study is led by Dr Lorna Fraser, Director of the Martin House Research Centre at the University of York.

Little is known about the current number of children living with life-limiting and life-threatening conditions and new information is needed about their age, condition, ethnicity and where they live. A lack of accurate data on this population makes it difficult to plan, fund and deliver the right care and support that meets the needs of every child and their family.

The most recent estimate, from 2010, showed that there were at least 49,000 babies, children and young people with life-limiting conditions UK-wide[1], but service providers suspect that this is an under-estimate for two key reasons. Firstly, advances in medicine mean that more babies are surviving complications at birth, and young people with complex conditions are living longer. And secondly, a recent research study by Dr Lorna Fraser on the prevalence of these children across Scotland, showed that there has been a continued increase in the number of children with life-limiting conditions up to 2015[2].

The new research study will:

  • Estimate the number of babies, children and young people in the UK with life-limiting and life-threatening conditions.
  • Develop a model to predict the future number of these children.
  • Provide the evidence base to help policy makers, commissioners and service providers accurately plan, fund and deliver palliative care to all children and families who need it.

Lizzie Chambers, Director of Development for Together for Short Lives said:

“Together for Short Lives has spearheaded this vital research. After listening  carefully to the views of all those in the children’s palliative care world, we are delighted to be working in partnership with the True Colours Trust and the team at the University of York to deliver this foundation piece of our five-year strategy.  This research is a fantastic opportunity to get the support and care for seriously ill children and their families right. Currently, too many are failed because commissioners and policy makers don’t understand the number and needs of these vulnerable children. This ground-breaking new study could give us the evidence to unlock vital statutory funding, so in the future no child or family is left behind.”

Lucy Sainsbury, Chair of the True Colours Trust said:

‘We are very aware that the future development and success of children’s palliative care services relies on accurate data about the number of children with palliative care needs.

The University of York’s new study is particularly exciting because it will not only estimate the current size of the population but will also predict the numbers of children who will require children’s palliative care in the future.  We are delighted to be able to work with Together for Short Lives and support the sector by funding this important piece of work. This study will improve the evidence base for children’s palliative care and, we hope, lead to improvements in services for children and their families both now and in the future.’

Dr Lorna Fraser, University of York added:

“This study provides an opportunity to both update our previous estimates on the numbers of children and young people with life-limiting and life-threatening conditions in the UK, but also to predict the number of children who will require services over the next 5-10 years.  These population-based data are vital for service planning and provision for these children and their families.”

The research study, funded by the True Colours Trust, will get underway in May 2018 and will publish its findings at the end of October 2019. Together for Short Lives is working closely with the research team at the University of York and the charity is chairing an Advisory Committee of key stakeholders to help steer the project and ensure that its findings will have maximum impact on the future development of children’s palliative care services across the UK.

ENDS

For media enquiries contact Myra Johnson, Director of Communications 07775336460 or 0117 989 7820

Click here to view the press release on the Together for Short Lives website

Notes to Editors

About True Colours Trust

The True Colours Trust is passionate about making a difference to the lives of disabled children and children who need palliative care and their families.  The Trust was established in 2001 and works in the UK and Africa.

True Colours has developed a framework of grant-making which enables it to effect change in the short, medium and long-term.  This is done through small grants to local initiatives; multi-year grants to build sustainable organisations and sectors; commissioning research to gather information and identify solutions to complex issues; and, making long-term investments towards advocacy and policy change. The Trust’s framework enables it to make positive change today, tomorrow and in the future.

About Dr Lorna Fraser, the Martin House Research Centre and University of York

Dr Lorna Fraser is a Senior Lecturer and the Director of the Martin House Research Centre at the University of York (www.york.ac.uk/mhrc ). The Martin House Research Centre is a partnership between Martin House Children’s Hospice, the University of York (Department of Health Sciences and the Social Policy Research Unit) and the University of Leeds. It is a multi-disciplinary centre for research on the care and support of children and young people with life limiting conditions or medical complexity, their families and the workforce that care for them. The Centre is holistic in its scope, recognising that the care and support needs of children and families span clinical/medical, social, psychological, parenting/caring, spiritual, financial and practical domains.

About Together for Short Lives

There are at least 49,000 children and young people are living in the UK with conditions that are life-limiting or life-threatening.

Hearing the news that your child has a life-limiting 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.

[1] Fraser L, et al (2012). Life-limiting and Life-threatening Conditions in Children and Young People in the United Kingdom: Final Report for Together for Short Lives: Paediatric Epidemiology Unit, Leeds University.

[2] Fraser et al. (2015). Children in Scotland Requiring Palliative Care: identifying numbers and needs. Available to download from: http://bit.ly/1Krn2EU

 

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