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Making every seriously ill child count

News and comment

Together for Short Lives is proud to announce an exciting new initiative for children’s palliative care across the UK. A new research study called “Make Every Child Count” 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 has secured funding for this 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-wide1, 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 20152.

The Make Every Child Count 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.

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.

 

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.

Lizzie Chamber, Director of Development for Together for Short Lives 

Lucy Sainsbury, Chair of the True Colours Trust added:
‘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 commented:
“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 five to ten years. These population-based data are vital for service planning and provision for these children and their families.”

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Comments

  1. Dear Tfsl, I am the Co-Founder of Life NoW, a charity that seeks to provide services for young adults. In the past we have had contact with Lorna Fraser concerning both the Leeds Report and the York Report, the latter presenting research on the age group 18-40yrs. My question is: what is the age range for this new study? And my hope is that it will go beyond the age of mid-twenties, as young people need to be well represented and this is clearly the opportunity for that to be done. The news is most welcome and we at Life NoW hope it has a significant impact on government and the general public. Yours sincerely, George Thomas

    Date
    25 June, 2018
    Author
    George Thomas
  2. Hi George, Nice to hear from you. Dr Fraser's new study will be for children and young people aged 0-25 as this is how children and young people are defined in government policy for SEND. So we won't be looking at data for the older young adults in this study.

    Date
    25 June, 2018
    Author
    Lizzie Chambers
  3. I am delighted to hear of this new study. We at Ty Hafan are very keen to be involved and support the ability to fully understand the population need in realtion to numbers of children with a LLC in Wales. Please can you advise who will be leading on this for Wales and how we can best support this work.

    Date
    26 June, 2018
    Author
    CAROL KILLA
  4. What a great study, we wish you well. Can you add me to the distribution list for updates and results please? Many thanks Amy

    Date
    26 June, 2018
    Author
    Amy Hunter
  5. Hi Amy - the best thing to do to stay in touch with updates on the project is to subscribe to our monthly e-Bulletin, which you can do here: https://www2.togetherforshortlives.org.uk/portal/public/register/group.aspx?group=g00001 Best wishes Tim Young Together for Short Lives

    Date
    27 June, 2018
    Author
    Tim Young
  6. Dear Doctor Lorna Fraser, I take the liberty of writing my comment in order to tell You that the title of Your study 'Make Every Child Count' must be hung at the entrance of every Pediatric Hospital of the World. Many Children are so vulnerable and invisible before the thoughts and eyes of many people. And Your title, Dr Fraser, must knock at those commissioners' and policy makers' heart and mind who, as Dr Lizzie Chambers wrote 'don't understand the number and needs of these vulnerable children'. Your title is the silent cry of Every Child in the World in need and in pain. Every day, when I approach to Children in need and in pain at the Italian Pediatric Hospitals I enter them and I listen to their needs, and I want to be and become prompt reply for each of them, and my first step is let them feel understood, if they feel understood this is the first Care, all the other cares are inside that. And, letting them feel undestood is being atmosphere for them, firstly with our voice, which is the articulation of our presence, and secondly with our sign, gesture, behaviour, and we create their space, ambience and atmosphere within their precious Time. Sincerely, Luisella Magnani www.luisellamagnani.it Linguist from Italy - Advocate for Paediatric Palliative Care in Italy from the International Children's Palliative Care Network -

    Date
    7 July, 2018
    Author
    Professor Luisella Magnani