Healthy London Partnership is excited and proud to announce our Gathering feedback from families and carers when a child or young person dies, has won the Patient Experience Network National 2020 Award in Using Insight for Improvement category.

Launched in September 2019, gathering feedback from families and carers when a child or young person dies is a new resource designed to help support professionals in their work with bereaved families and carers. It sets out the key principles of ideal bereavement care, provides guidance as to how and when feedback may be collected and by whom. Importantly, it includes the Childhood Bereavement Experience Measure, a suite of questions to inform local questionnaires.

Approximately 5000 children across the UK and 700 in London die each year. Each death has a profound effect on the child’s family and wider network who are themselves at greater risk of deteriorating health outcomes and suicide. High-quality bereavement care can go some way towards mitigating the wider impact of such tragic loss. However, without an effective mechanism of evaluation, it is difficult to determine where improvements in care could be made.

Collecting feedback on the care provided to bereaved families and carers following the death of a child or young person is of critical importance to improving bereavement care. Whilst some local healthcare systems have well-established mechanisms and questionnaires for collecting such feedback, many have indicated that they do not and would value guidance in this area.

Kath Evans, Director of Children’s Nursing, Barts Health, said:

“It’s wonderful to see the work of the Healthy London Partnership team recognised in the 10^th Anniversary Year of the Patient Experience Network awards, supported by Sir Simon Stevens, CEO of the NHS and Ruth May Chief Nurse of England.

“Gathering feedback and insight from families who have experienced the death of a child is complex and health care professionals prior to this guidance were often baffled by where to start.

“Co-production with families who experienced these most difficult of circumstances was embedded from the outset via collaboration with the charity SANDS (who had previously supported the development of the maternity experience measure) along with a range of professionals including children’s bereavement nurses from across the country.

“I am so proud of the work that’s be done, led by the Healthy London Partnership Team, thanks to them seeking feedback is no longer in the ‘too difficult’ box, it can be sought sensitively and used so that together we keep improving services. It’s great the work has received national recognition! Well done!”

David McKinlay, Programme Manager, Healthy London Partnership, said:

“This is just another example of the excellent collaboration led by HLP, bringing together system experts to outline best practice and co-develop tools to support quality improvements to local services.

“It is our hope that local bereavement services will consider the principles outlined within this resource when developing or reviewing their feedback mechanisms, which will ultimately lead to improvements in bereavement care across London.

“We want to say a huge thank you to the parent contributors, the National Children’s Hospital Bereavement Network, bereavement leads across London and the stillbirth and neonatal charity Sands, thank you for your contributions and support in this project.”

Feedback to date has been overwhelmingly positive.

Daniel Devitt, Interim Children’s Commissioner, NHS Redbridge CCG, said:

“Gathering feedback is a significant and timely resource for those of us working on the End of Life and Child Death Review (CDR) agendas.

“We have not had a structured and replicable approach to capturing the real-life experiences that bereaved parents, carers and siblings have of the services we offer. Use of the resource has been built into the Barking, Havering, and Redbridge (BHR) CDR systems and shared with the bereavement services at BHRUT NHS Hospital Trust.

“The data that will flow from our questionnaires will be crucial in understanding the effectiveness and the development needs in the services we commission for those faced by the death of a child.”

For more information, visit www.transformationpartners.nhs.uk/gathering-feedback-from-families-and-carers-when-a-child-or-young-person-dies-new-resource