Awareness to Action – #BabyLossAwarenessWeek

In response to my semi-rant on the vagueness of awareness raising and the need to convert it into action I received a comment asking a not unreasonable question.

“So what can we do to transfer awareness in to action?”

I thought I had answered that question but looking back it was a semi-rant about asking questions but not necessarily about to whom they should be addressed.

A good question deserves a good answer.

How do we transfer awareness in to action?

First step is by talking about our children and our experiences. We have the difficult conversation with friends, family and beyond. They may not all understand (and some may, they just hadn’t mentioned it) but they may want to understand why this grief is different, why a ‘rainbow’ baby doesn’t magically reset our emotions or erase their brief lives from our memory.

Where we have received shabby or callous care, poor treatment or just been badly handled we speak up about it. Complaint is but one avenue (a draining one but sometimes necessary) but there are good people in maternity care that want to learn from experiences like ours, want to improve care at all levels and heal. Becoming part of that movement and alliance of medical professionals and parents can push for real changes in culture and practice.

Where there is an absence of support we can create our own networks, bereavement support groups, therapeutic retreats, even charities like Teddy’s Wish. Setting up a charity can be consuming so we can also work with existing charities like Sands, Tamba, Tommy’s, Miscarriage Association, Bliss, Simba and more to help them campaign for change.

We can raise the issue with our elected representatives so they can ask questions on our behalf of Government and find out what is happening to prevent more needless deaths and better support the bereaved.

It’s groups like the All-Party-Parliamanentary Group on BabyLoss working with charities and parents to drive change by holding debates in Parliament and identifying the next steps to turn awareness into action.

Beyond Awareness to Action: Tackling baby loss in the UK

It’s almost as though they read my mind…


This publication outlines the goals and approaches to achieve them.


  • Prevention – research, information and support are developed to promote a healthy pregnancy and reduce the risk of baby loss
  • Commissioning – appropriate bereavement services are commissioned to meet the needs of local populations
  • Clinical care – excellent clinical bereavement and prevention care and appropriate bereavement facilities are provided across all regions
  • Support – all bereaved families have access to high quality free bereavement support and advisory services.


  • Delivery of public information and health promotion campaigns
  • Better knowledge collection and usage
  • Development of a bereavement care pathway
  • Development of a national bereavement service
  • Ongoing staff education and training

This is big stuff and it’s only possible through the combined efforts of politicians, medical professionals, charities and bereaved parents. Its title much like The Lancet research series on stillbirth is a call to action and a clear view of what needs to be done and how it can happen. It takes our voices, our effort to keep the momentum going so as #BabyLossAwarenessWeek inevitably fades from public view to be replaced by the next awareness raising event, it doesn’t lose the place so hard fought for on the political agenda.

It is in doing all of this, both big acts and small that we can turn awareness into action.

4 Comments Add yours

  1. Chantal says:

    Thanks for this. I did write to my PM about ten days ago, asking whether she would attend the debate today. She didn’t write back and I don’t know whether she attended.

    Via MatExp I have connected with the Nobody’s Patient project to see if I can be of some help there.

    I have offered my (professional) help to SANDS wrt to their multidisciplinary project on reviewing deaths.

    I don’t know what it is exactly but this baby loss awareness week is really getting to me this year … I am finding it really hard and it’s three years ago now.

    The more time passes the more I start to think two things. First ‘do you know what, what happened to me is actually not OK’. The second thing is … At one point I will have to tell my daughter she had a twin sister who died in labour and didn’t need to die. She will then ask me ‘mum, what did you do about it?’. At the moment I don’t have a good answer yet I think and I need one.

    You mention that talking about our children and our experiences is the first step. How do you do it? I talk about it, now, this week, because we need to tell people that this stuff is important, this stuff matters, so that they can tell the people in government, the people who make policies, the people who fund research, that this stuff matters. But outside this week, I don’t really want to talk about it … How do you keep sane and still be able to push this important agenda?

    Liked by 1 person

    1. ShoeboxofM says:

      It is hard and I’ll be taking a break from it for the reasons you’ve outlined. I’ll come back to it when I’ve worked through some of the grief and questions about how I feel about my father’s death and what he meant to me. It doesn’t mean I don’t care, there are more people now starting to have those conversations and pick up the torch to push for change.

      From what you’ve described, you’re doing plenty to get started and if that helps you find meaning and helping others that’s good but self care must be the priority.

      Some of this is about starting the ball rolling by prompting the people you’ve outlined and reminding them this is an issue that matters and you have done that. It’s like the 38 degrees point where your snowflake helps trigger the avalanche.


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