#FindingYourWay – Notes from the Sands Conference 2019

Finding my way to #FindingOurWay

I woke at 3am with a mix of anticipation and dread.  I’ve spoken many, many times on stillbirth and pregnancy loss but not of my sons, not directly.  In blogs, yes but in events I’d always preferred to stick to the higher levels and themes rather than the specifics.

As I walked to the station to travel to the Sands conference, my brain fizzed with the many, many possible things to raise all the while conscious I had about half an hour to do it.  I wanted to speak about so many aspects of loss and what is to be done.

And I did.  Not necessarily in my speech at the panel but with every bereaved parent and all those there working to support them.  Speaking in the margins, in coffee breaks and even the toilet(!), sharing stories, sharing ideas.  It was a great day, speaking with so many great people, tempered by the knowledge why each of us was there while building a sense of community and support.

Stats and the spectre of Shrewsbury

There was some comfort to be taken in the recent statistics showing a reduction in stillbirth and neonatal death from 15 a day to 14 a day.  That’s a lot to celebrate but amongst those headline figures there are some worrying findings around the increase in neo-natal deaths and the increased risk of stillbirth in multiple pregnancies

Dr Asma Khalil’s research presentation was a hard one to listen to especially with that focus and seeing the starkness of increased risk associated with late term pregnancies.  I found it difficult when she described some of the research around this as controversial having seen what can happen when medical intervention like induction or c-sections are seen as somehow a shortcoming or sub optimal result for a trust.   

In 2011, the Shrewsbury hospital issued a press release celebrating the fact its caesarean section rates were the lowest in the country, and telling local media the success was down to “having an environment which encourages natural childbirth and a wide range of strategies to keep caesarean deliveries low”.

While not referenced directly in the presentations the news of Shrewsbury was there in the background.  After the horrors of Morecombe Bay the emerging news is a fresh insult.

News like this strengthens resolve to prevent avoidable deaths and support parents fighting for justice and to make sure that this never happens again.

Update: Since writing this more is coming to light and keeps on coming

Young mothers

Every conversation revealed something new and a combination of hope and horror at every turn.  Much of the discussion was a deepening of the main theme of the event and how to reach different groups.  I heard accounts where following loss, teenage parents were told that it was for the best as they weren’t ready to be parents anyway.

Caroline Lloyd is researching experiences in this area to help improve understanding and support, please share this link with any groups or individuals you think may be able to help.

Workplace support

In the discussions around improving workplace support I heard both good and bad stories.  One recurring theme was around groups and professions geared for supporting others, such as the police force, teachers and carers, failing to support their own staff after loss.  Where loss charities have been active in supporting health care professionals to understand the impact on bereaved parents, it seems like there is a gap in terms of those same healthcare organisations supporting their own staff in their loss.

When I’ve been working on support at work I’ve made the links with the mental health support networks and mental health first aiders, not to medicalise grief and bereavement but to highlight the crossover and shared areas so baby loss is not seen as a niche area and can be part of the wider understanding and conversation.  I was surprised to hear that when one of the bereaved parents had a similar discussion at the Mind conference, she was met with blank stares and bewilderment. On a related point, I was not the only one disappointed by the lack of media pick up on the main theme of this year’s Baby Loss Awareness Week and the woeful state of access to mental health for bereaved parents.

Need for diversity in loss voices

The conference had various places for attendees to celebrate their successes and look at what more needed to be done.  It was good to see the focus of many tags and conversations being on diversity in loss.  This was a good opportunity to provide a signal boost for Jess’ #DiversityInLoss blog series and the #BabyLossHours on this topic, Amneet Graham’s work as part of Willow’s Rainbow Box and her role in Maternity Voices Partnership and the new Twitterchat #BAMEMaternity

If you haven’t already done so, you still have time to listen to Mobeen Azhar’s fantastic radio show on BBC Asian Network on the topic of stillbirth.  He’s a very skilled interviewer handling a difficult topic sensitively and with real curiosity, leaning into the awkwardness and showing openness to learn. 

There is also a Channel 4 documentary on the higher rate of maternal and infant mortality available here.

Bereaved fathers

The panel discussion was really good and it was great to meet Rob Allen and Jonathan Bird.  David Haig was a true gentleman taking the time to talk with us before the session to learn more of our stories and guide us through the process.  I was nervous about talking about my sons.  Most of the time I tend to stay away from the specifics almost to the point where people may mistake me as an ally rather than bereaved father.  I’m glad I did talk because I spoke to parents afterwards that had had similar experiences.

David made good use of the short time we had together to focus us all on the different ways we found our own way to live with our grief and the way that changes over time.  Hearing the story of Sands United and how it has grown so quickly and the impact it had was incredible.  When it came to Q&A so many of the speakers gave personal accounts of the difference it had made to them and their partners.  It helped highlight the value of not only considering diversity in loss but in support structures too.  Providing non-talking based options rooted in a shared interest can be a powerful way to allow bereaved parents the space to talk if they find it helpful.  Not everyone wants to talk, we can still create the space to allow them to should they change their mind.

I was grateful for David to allow me the prompt to talk of the importance of suicide prevention and accessing help early without waiting for it to be ‘bad enough’ to seek support.  I also spoke of how many different forms of support there are out there and to keep exploring if you find one that doesn’t work for you.  Grief is highly individualised experience and what may comfort others offers nothing for me.  Language can be a big part of that as well as tone.  We can offer our help in finding those different voices, ones that resonate with our own.   

Resources for fathers and partners can be found here.

One more thing…

I had a good discussion on resurrecting the pregnancy and baby loss organisations online (PABLO?) directory and will hopefully get that moving again in the new year.  If you can spare some time to help as a volunteer with capturing support groups or categorising what is already there to help understand what is being offered to whom and where I would be grateful.

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