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Panel Professor Neil Marlow, Dr Katie Gallagher, Jennifer Deeney, Lisa Leppard, Sarah Barclay, Vic Robinson (chair).

February 28, 2019

Child Bereavement UK hosts annual Neonatal Palliative and End of Life Care Conference

A bereaved couple has urged healthcare professionals to engage with parents with greater compassion and understanding at a conference organised by Child Bereavement UK. The couple shared the story of their baby daughter who died when she was just nine and a half weeks old.

Addressing professionals from the health sector at the ninth Neonatal Palliative and End of Life Care Conference about their experience in a neonatal intensive care unit, the couple said: "Nothing can prepare you for these moments in your life. What we have experienced has made us realise that what professionals say or do stays with you for the rest of your life."

The conference, which focused on helping professionals to build positive relationships with parents, took place at the Cavendish Conference Centre in London on 5 February and was attended by 200 healthcare professionals, including midwives, neonatal consultants and nurses. Delegates included 20 student midwives and 24 neonatal nurses who were sponsored by bereavement charities Abigail's Footsteps and 4Louis respectively.

The event focused on the challenges faced by families and professionals in neonatal units, including difficult conversations, breaking bad news and the need for good communication.

Professor of Neonatal Medicine Neil Marlow and Honorary Research Associate Dr Katie Gallagher, from University College London, spoke about parental involvement in neonatal critical care decision-making. Professor Marlow gave a summary of an analysis of conversations between healthcare professionals and parents in neonatal units and outlined ways in which healthcare professionals can engage more positively with families.

Dr Laura de Rooy, Consultant Neonatologist at St George's NHS Foundation Trust, gave her personal perspective on shared decision-making. She encouraged healthcare professionals to see parents not as visitors but as an important part of the team, saying: "Including parents in the decision-making isn't the icing on the cake, it is the cake."

The afternoon session included a panel discussion chaired by Vic Robinson, retired Consultant Obstetrician and former Chair of Trustees for Child Bereavement UK. The panel discussed ways in which healthcare professionals can communicate more effectively with parents, and the importance of empathy and understanding.

Speaking about the conference Jean Hartley, a neonatal nurse from John Hopkins Hospital, Baltimore, USA said: "The things that have been the most powerful that I'd like to bring back to my work are the subtleties, like the things the couple spoke about - things that had been said that were hurtful and not taken well. And thinking about the language we use when we're talking to families. It really informs the culture of your unit or ward, the way you talk about this sort of thing."


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