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Putting children and families at the heart of children’s palliative care

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I am very excited to have in my hands a hot-off-the-press copy of The Guide to Children’s Palliative Care. This is now the fourth edition of the Guide – and, can you believe it, the third edition I have been involved with. Developing this has been a labour of love – bringing together the very best knowledge and experience of world-class children’s palliative care clinicians, researchers and practitioners. Seriously ill babies, children, young people and their families are at the heart of the Guide, with a passion to make sure that every child and family get the very best care and support from diagnosis to end of life and into bereavement.

ACT published the first edition of A Guide to the Development of Children’s Palliative Care Services in 1997. It was the first time that the definitions of children’s palliative care and the numbers and needs of life-limited and life-threatened children, young people and their families had been documented in the newly emerging field of children and young people’s palliative care. A second edition was published in 2003 and a third edition in 2009.

We still have a mountain to climb in our collective journey to ensure every child and family get the care that is right for them.

Thankfully so much has been achieved since ACT first published the Guide. This fourth edition comes as children’s palliative care provision is relatively well established in the UK. But we still have a mountain to climb in our collective journey to ensure every child and family get the care that is right for them. And children’s palliative care is ever changing – thankfully advances in medicine and technology mean more babies are surviving and more children are living longer – but often require increasingly complex care. We must keep pace with increasing numbers of children who need children’s palliative care and adapt our services to their unique needs.

The new Guide describes the current state of the field and advocates for the next phase of its development, in particular, calling for an increase in research as the evidence base has not kept pace with the developments in clinical provision and practice of children’s palliative care.

It was such a privilege to work again with Dr Ann Goldman on this latest edition.  Ann may have retired from practice, but she remains an absolute champion for children’s palliative care and a rigorous editor!

What’s new in the Guide

The new edition of the Guide will have much familiar content to those who work in children’s palliative care.  This is intentional as the definition and the four categories of life-limiting or life-threatening illness are such important fixtures for those of us who work in the sector.  We have changed some of the exemplar conditions to reflect the fact the treatment and life-expectancy for some conditions has changed over the past decade.

The changes you will see:

  1. It has been written from the standpoint that children’s palliative care is no longer ‘in development’ but is now a recognised speciality
  2.  It has a greater focus on enabling all professionals to better understand the value of a children’s palliative care approach – the care of life-limited children is everybody’s business
  3. There has been considerable research published, including a study by Dr Lorna Fraser on the prevalence of life-limiting conditions in children. This epidemiological study is key to the better understanding of the need for and planning of children’s palliative care services
  4. NICE have published guidelines on palliative care for children in the last year and we have matched these recommendations within sections in the Guide to make it a useful tool

We were all delighted that the Guide not only achieved endorsement from the Royal College of Paediatrics and Child Health, but also from NICE itself – no mean feat!

Download A Guide to Children’s Palliative Care here

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