Inspiration from Bea, whose life was too short.
The CYPACP was inspired by a child and her family. The aim was to create a document that was essentially child centred that would be easy to use in an emergency and covered all holistic aspects of the baby, child or young person and their family wherever they happened to be; home, school, hospice or hospital. Since then many families and young people have contributed to the document as it has progressed and we thank every one of them.
The experiences of Beatrice Lee and her family were central to the development of the CYPACP. During each critical illness, they had to watch doctors and nurses try to work out whether Bea was at the end of her life or not. However, difficult issues were often skirted over, resulting in no real decisions or plans being made or expressed out loud. Bea’s family felt strongly that transparent, honest discussions were needed and that all families should be given the opportunity to have their say. Their resounding message was that these conversations are never too early. Families need time to consider options while their child is stable; on-the-spot decisions can take away the opportunity to think things through and may lead to regrets.
Helen, her mother, explained that the birth of the current document was inspired by conversations about Bea’s medical care with Serena Cottrell, her close friend and godmother to her eldest daughter, who was also a paediatrician in the South Central region. At the time, it was Christmas 2004, Bea was seven years old, and she had just experienced a bout of severe pneumonia requiring intensive care treatment.
Sadly, Bea’s life was cut short at the age of nearly 13 years in March 2010. This was the same month that the document was launched for the whole of the South Central region, after several years of work from dedicated doctors and nurses from hospices, community nursing teams and hospitals, and it has become Bea’s legacy.
As Juliette, Bea’s twin, said ‘it is not just about the medical treatment; it is the little things such as knowing I am her twin and not just her sister, of knowing that Bea loved bright colour and brass band music, and that Christianity is a key part of our family life’. The fact that this could all go into one document would have ensured that the best and most personalised care could have been given to Bea. This care would have come not only from the nurses, doctors and other members of the multidisciplinary team who were so special to her in the hospice, hospital and community, but also from healthcare professionals who had never met her before.
This document is like having the clinician who knew Bea best at the side of the bed in a strange emergency department or in a new intensive care unit.
We are delighted to have Juliette as a patient advocate within the CYPACP team.
Dr Serena Cottrell, Consultant in Paediatric Emergency Medicine, Founder and Retiring Co-Chair with Dr Peter Mark Fortune of the CYPACP collaborative.
Dr Peter-Marc Fortune, Paediatric Intensive Care Consultant, Manchester Children’s Hospital, and Chairman of the Paediatric Intensive Care Society.
Dr Emily Harrop, previous Chair, Consultant in Paediatric Intensive Care at Helen & Douglas House Children’s Hospice, Oxford.
Input and consent from Juliette, Helen, Mark and Rosie Lee.