Hearing from bereaved families

How we care for babies, children and young people at death, and the care we provide for families remains etched in memories forever. Parents including Chezelle Craig @whatsinakiss, Adam Bojelian’s @4AdsthePoet parents and Joanne Hughes @Mothers_Inst_UK, amongst many others have taught me so much over the years and I am so grateful to them all.

Seeking out parent insights is important in making care as good as it can be in such awful circumstances. Leigh @leighakendall mum to Hugo repeatedly reminds me that families want to help improve things for others.

Back in 2017 Jane @JbereavementUK a bereavement midwife at Imperial and Donna Ockenden @DOckendenLtd led work with SANDs and the London Maternity Network to compile the Maternity Bereavement Experience Measure (MBEM) here’s a blog about the work we did https://www.england.nhs.uk/blog/we-must-listen-to-parents-after-their-darkest-hour/ the resource can be found here http://www.londonscn.nhs.uk/wp-content/uploads/2017/06/mat-bereavement-mbem-062017.pdf

It was Ronny Chenug @CheungRonny a Paediatrician who rightly challenged us and said that if we had a suite of agreed sensitively tested questions to use when bereavement happens in maternity care, it would be helpful to have a suite of agreed questions for parents who experienced child bereavement too. SANDs once again supported the work and this week saw the publication of the Child Bereavement Experience Measure by the Healthy London Partnership Team @HealthyLDN, it can be found here https://www.healthylondon.org/our-work/children-young-people/child-death-review-programme/gathering-feedback-from-bereaved-families-and-carers/

Importantly families, healthcare professionals, the voluntary sector and staff working in roles supporting continuous improvement, have all worked collaboratively to compile these resources for us to use flexibly to gather feedback and use it in commissioning and delivery of services.

Complementing this work this week’s commutes have whizzed by as I’ve listened to Dr Matt Morgan’s @dr_mattmorgan welsh accent reading his reflections of working with people, ‘Critical’ https://www.audible.co.uk/pd/Critical-Audiobook/1471180417.

Lots of his reflections, including the long corridors and respiratory wards of Llandough Hospital resonated as it’s where I did my training back in the late 1980s. Yet it was Matt’s reflection on the work of Rhian Mannings @2wishupon http://www.2wishuponastar.org/ to create environments in hospitals where life changing news can be shared, that made my ears tune in even more intently. Rhian shared that her world changed in 2012 when her 1 year old baby son, George died, followed by the death of her husband Paul, 5 days later. When her son died Rhian paced the corridors looking for a quiet office to spend quiet time with her son who had died, there was no room allocated/created for this. Rhian’s charity now creates undisturbed spaces in hospitals for news to be shared and for families to absorb what’s ahead, in some shape or form.

I had the privilege of meeting Rhian as NHS England worked to improve Child Death processes https://www.gov.uk/government/publications/child-death-review-statutory-and-operational-guidance-england. Rhian’s strength and determination that her work would make a difference for other families infected us all that day. Her presence was unforgettable, please do follow and support the work of her charity.

The work at NHS England with the Department for Health and Social care restructuring Child Death processes, led to the Lullably Trust @LullabyTrust creating an information resource for families when a child dies http://https//www.lullabytrust.org.uk/bereavement-support/when-a-baby-dies/

The final words this week though goes to thanking the team at Child Bereavement UK as they celebrate 25years of rebuilding lives when awful things happen. It’s clear that it’s only when we all work together families, professionals, the public and the voluntary sector that we can really make a difference in people’s lives.

Author: @kathevans2

I’m a Children’s Nurse who is passionate about improving healthcare and life with people who use services. I love getting out in the countryside or to the seaside to promote my mental health and well-being. On a journey to doing 100 marathons (slowly!) & part of team #NHS1000miles (new members always welcome!) I also love charity shopping, cooking and healthy eating too 😉 Sharing thoughts on a range of things that interest me. Comments, challenge, links to further thinking and research are most welcome. Learning and thinking together is always more fun!

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