Gathering feedback from parents following the death of their baby: launch event in London, 22/6/17

On 22 June 2017 health professionals, charities, and bereaved parents gathered at the Kia Oval in London for the launch of new guidelines about gathering feedback from families after the death of a baby.

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  1. The resource and guidelines can be downloaded through the link below.

  2. It is no exaggeration to say that the launch was an historic event: bereaved parents are routinely excluded from the national maternity and neonatal surveys. This exclusion is for understandable ethical reasons around sensitivity and appropriateness - but until now, no alternative existed.

  3. Seeking the views of bereaved parents is as valuable for safety and patient experience as for any other area of health and care. Feedback enables services to understand where they are doing well: and crucially, where they need to improve. That has resulted in huge disparity in the quality and availability of services and support across the country. Many bereavement services are provided through hospital charitable funds and by independent charities, rather than through standard hospital pathways. Bereavement services have for too long been seen as a low priority - and this must change.
  4. For too long, seeking the views of bereaved parents has been put on the 'too difficult' pile. These guidelines provide an easy-to-follow process that can be adapted by any hospital. I hope services will adopt these guidelines, and integrate them into their feedback processes just as they do with families of living babies. As you will read from discussions and points raised during the launch, bereaved families want to be heard. We do not want to be ignored or excluded. We want to help, and for our babies' memories to live on through helping other families. We want other families to be supported to create precious memories with their babies, and to receive psychological support. We do not want other families to fall between the cracks of services: nobody should feel like they are 'Nobody's Patient'.
  5. I am beyond proud that my campaigning following the death of my son, Hugo, has influenced the creation of these guidelines. I would like to thank everyone who has been involved, and who are so passionate about helping families at the worst time any parent can imagine.
  6. Please do take the time to read through these tweets, follow links to blogs and resources and share where appropriate. These guidelines demonstrate that change can happen through passion, determination, commitment, collaboration, and coproduction.


  7. Blogs from Kath Evans, Hannah Atherton, Donna Ockenden, Cheryl Titherly, and Jane Scott, the core team behind the guidelines on why they are so important:


  8. While the guidelines focus on maternity services, they are relevant to any specialty that may come into contact with bereaved parents: such as, but not limited to gynae (miscarriage notoriously falls between the cracks of services); neonatal; A&E; GPs; intensive care (for women like me made very ill by pregnancy).

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