For too long, the voices of bereaved parents have been hidden, not sought, excluded. That changed on Thursday 22 June 2017, with the launch of new NHS guidelines for Gathering Feedback from Parents Following the Death of their Baby.
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, as I wrote about with immense frustration, anger, and upset in this post.
This exclusion is for understandable ethical reasons around sensitivity and appropriateness – but until now, no alternative existed.
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.
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’.
I am beyond proud that my campaigning 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.
These guidelines show that passion, commitment, determination, collaboration, and coproduction can bring about positive change.
These guidelines are also an exemplar of the dynamic between ‘old power’ and ‘new power’ – as a patient leader, I am ‘new power’, not part of the traditional hierarchy but by collaborating with those who are (the ‘old power’), and by the old power respecting and listening to patient leaders like me change can happen.
There is a long way to go, but this is such a positive first step. I hope this – and other examples of people making a difference provides inspiration for others to make their voices heard, to find communities of like-minded people to support their work, to take action.
If you’d like to know more about the launch event, the discussions and issues raised please see this Storify summary. There was also interest in the bereavement cards I produced for St George’s – more information is in this post.