A unique centre for palliative care is bringing together doctors and academics to create a “deeper body of research” to transform care for seriously ill children across the country.

Specialists at the Louis Dundas Centre for Children’s Palliative Care (LDC), based at Great Ormond Street Hospital (GOSH), are attempting to revolutionise the care of children with life-limiting and life-threatening illness.

In a wide-ranging interview with The Independent, Myra Bluebond-Langner, True Colours Chair in Palliative Care for Children and Young People and lead professor at the centre, said the LDC was dedicated to breaking down the misconception that paediatric palliative care was only focused on end-of-life care in children.

“Palliative care is not about end-of-life care,” she said. “It’s about living with the illness.”

That is why the professor and her team work to try to control symptoms and help children and their families to make decisions that yield the longest life with the best quality of life, whether it be a few weeks or many years.

Research and practice at the LDC follows three main guidelines, says Professor Bluebond-Langner. These are to “listen to the child”, to take their “concerns and wishes into account” and to make sure the difficult decisions are “not the child’s alone to make”.

Researchers have historically shied away from publicly discussing the harrowing subject of palliative care for young children, but the LDC, which is funded by grants and charitable donations, together with The True Colours Trust, is dedicated to kick-starting a revolution in research and sharing this with hospices and hospitals across the country and beyond.

Professor Bluebond-Langner and the LDC team regularly visit paediatric hospices across the country and speak at events worldwide. In the past year, LDC staff have spoken at 44 meetings, lectures and conferences as far afield as Rome and Mumbai.They have also published 12 journal articles and taken part in more than 30 national and international events.

The centre offers foundation courses in palliative care, and hosts doctors and academics from all over the world. It has also run intensive sessions at hospitals across London for healthcare professionals, breaking down the traditional model of doctors attending expensive and time-consuming events.

Professor Bluebond-Langner – author of the influential work The Private Worlds of Dying Children – is leading a study on decision-making for children with high-risk tumours. The study is designed to capture the entire days of a family’s life in treatment, in clinic, hospital and at home.

This involves the professor and her research team analysing 50,000 pages of verbatim transcripts of parent and clinician conversations. She said that while the work was “desperately sad” the “real burden” she felt was of the importance of giving a voice to parents, children, doctors and nurses, and transforming the way to meet their needs.

The LDC, which will be a main beneficiary of The Independent’s Give to GOSH appeal, was established in 2009 after businesswoman Ruth Kennedy and her husband, Bruce Dundas, had to watch their four-year-old son Louis die in unbearable pain after he was diagnosed with a brain tumour. Professor Bluebond-Langner said support from the couple had created a “critical mass” to augment the clinical team at GOSH but also to develop her academic unit.

She said: “Our goal is to make a tangible difference in the lives of children with life-limiting and life-threatening illnesses through an integrated programme of research, practice, education and policy.”

Ultimately, the professor and her team want to be able to conduct large, multi-site studies across the UK into children with life-limiting conditions. She said: “We are very much at the beginning of the journey, but that’s starting to happen. We are off to a good start.”

Professor Bluebond-Langner and the team at the LDC have also welcomed the attention The Independent’s Give to GOSH appeal has brought to the “nascent” world of paediatric palliative care, a field that is often neglected.

“As important as this campaign is to raise money for the children and their families at GOSH, to me the other major contribution of the Give to GOSH appeal is that this is the first public mass education on paediatric palliative care in the world,” she said. This would raise public awareness, she explained, so that those who have never had to live through the death of a child better understand what children and families go through and how palliative care is about treating the “whole child”, which means not only their physical but also their social, emotional and spiritual needs.

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