Today is the start of Baby Loss Awareness Week 2019. A week to remember babies who were lost in pregnancy, during birth or soon afterwards. I wanted to write something in honour of little Sprout whom we lost in August. Sprout was only on the brink of being – a seven-week-old embryo whose heart had barely started beating before it went still. But they were also a tiny bundle of hope and, as those first three months passed, dreams and plans.
The impact of a hidden grief
Miscarriage is often a hidden grief. Around one in four pregnancies will end in miscarriage. Most of these happen in the first trimester. Many of us choose not to share until after the dating scan. But when things go wrong we suffer in private, without the support of family and friends.
There are thousands of us trying to make sense of these feelings alone when we could be helping each other through. Pregnancy loss is ignored in policy and in the workplace. Women and their partners are not given the right psychological and physical support. The Miscarriage Association and other charities involved in Baby Loss Awareness Week are trying to change this. I recently wrote a report on pregnancy loss, mental health and the NHS and new mental health resources for the Miscarriage Association. I’m currently working on new information for employers and I’m involved in a cross-government working group to improve guidance around workplace policies relating to fertility, miscarriage and baby loss.
In 2017 I developed a content plan and wrote 26 articles for Bupa’s new workplace mental health hub. I used to be a workplace ‘health check’ consultant for Time to Change and I enjoyed using my knowledge and experience of the issues involved to create resources that would help organisations make positive change.
All the articles were written to the Information Standard – an NHS kitemark that requires them to be based on the latest evidence and regularly reviewed.
Last time my work was nominated (and came runner up in two special categories), I was 37 weeks pregnant and didn’t want to risk a trip to London. This time, I was recovering from a missed miscarriage and was again unable to attend. One day I’ll make it – it’s a good opportunity to catch up with old colleagues and meet people doing wonderful and innovative things in the world of patient information.
I recently worked with Hemihelp (now part of Contact) to help them train volunteer moderators for their peer support group on Facebook.
The group was established in 2007 and became more active in 2011. It has over 5,000 members and over 11,000 interactions each month. It seems to be a strong community with a lot of peer support offered (there is little need for moderator input on this front). There is debate among members over the nature of the group and how it should be used.
I offered some advice around consultation with the community to help ensure the guidelines and moderation approach are based on the needs of the group. This can also be a really good way to introduce and embed changes.
Hemihelp planned to recruit volunteer moderators to help them manage the group moderation during office hours. I am usually a little wary about using volunteer moderators especially ones who are still active members of the group but this can depend very much on the community in question.
Initial response to the advert was quite low. This was perhaps understandable given the nature of the group (busy parents from all over the UK, many of whom couldn’t make it to London for training). I recommended that they emphasise the transferable skills volunteers might gain as well as the opportunity to help the community. This helped them recruit a few additional trainees but I think they would need to offer comprehensive online training to really increase their numbers.
I did extensive desk research and conducted a survey of the Miscarriage Associations supporters and stakeholders. In one week we received 1716 responses from people who self-identified as having had mental health problems as a result of their loss or losses.
Report and recommendations
I wrote a detailed report and provided recommendations.
Review of existing guidelines and quality standards showed that mental health support around pregnancy loss is limited and not always followed. Research highlights the association between early pregnancy loss and PTSD symptoms, OCD, depression and anxiety symptoms in particular – although studies are small, difficult to synchronise and limited in scope.
96% of all respondents to the survey reported that they had experienced difficult feelings, emotions or reactions that were caused by or related to their loss or losses in some way. 74% felt alone or isolated, 69% experienced persistent low mood, tearful or unable to find pleasure in things you used to enjoy and 61% felt numb or shut off from other people. 39% of all respondents had existing mental health problems that were made worse by their loss or losses. As well as the statistics we had almost 10,000 individual pieces of qualitative data to read and collate.
I’m writing this to make sense of how I felt yesterday. I’m sharing it because I’m sure I’m not alone. Parenting is really hard and parenting with mental health problems can sometimes be a real struggle.
I became a mum in October 2017. In some ways, it’s made me more resilient. But those dark and anxious thoughts have always found my most vulnerable spot to poke away at – and now that’s my gorgeous, loveable, wakeful, clingy, frustrating, exhausting, friendly, kind, smiley little boy.
Uncertainty, blame, guilt and comparison
When I’m really struggling with my mental health, all those normal parenting concerns are magnified. I lose all perspective. I question everything. I blame myself for his tears and worries. I get frustrated that he rarely wants to get down from my arms and play, when there’s so much I want to explore with him. Then I feel so guilty for wanting him to be even the tiniest bit different. He’ll have enough of that in his lifetime without me doing it too.
I compare myself to others and find myself wanting. I overthink his naps, the amount he breastfeeds, the time he sleeps, the little he eats. I wish I could have his Dad’s strength and calm.
I struggle to find the energy to bounce him through the day. On the very worst days, I hold him with tears in my eyes, unable to see my way through the next ten minutes of parenting tasks, let alone the hours until bedtime. And then I feel pathetic – and guilty that he saw me cry.
My heart feels raw when I think of him. I hurt for the pain he’s bound to feel, for the upsets and the bullies and the difficulties I can’t protect him from. And when my defences are low, I get horrible intrusive images of him falling, or drowning, or burning. Images that send my adrenalin soaring and leave me shaky and tight chested.
Fundamental emotions, twisted and distorted
It doesn’t get to this point too often, thank goodness. Usually, I have more perspective. I’m more resilient, patient and practical. But when I do spiral down, it’s faster and harder than before.
Those fundamental mum emotions of intense love, protectiveness and wanting the best for him get twisted and distorted into guilt, sadness, fear and negativity about myself and my ability to cope. And these emotions are so strong, so deeply fundamental, that their distortions are powerful and destructive too.
Strength and love
The love I feel for Oaklan is incredible. When I’m not with him, I feel as if I’m slightly holding my breath until we are back together (even if I’m also desperate for a break!). These feelings will never fade. I never want them too. Perhaps part of being a parent is accepting that I’ll always be dealing with deeper and stronger emotions than ever before. But I hope that by starting to recognise how they interact with my mental health, I can stop letting the worries and fears take over too easily.
We’re never alone
Almost as soon as I posted on Twitter I got this response from another mum. I knew it wasn’t just me but sometimes it feels very lonely in my head. It’s good to be reminded that we’re not alone.
But this is nothing new. Reports in 2018 said existing guidance leads to misdiagnosis and harmful long-term prescribing. Thousands of people have reported huge difficulties coming off antidepressants. The longer you’ve been on them, the harder it seems to be to come off. Yet many healthcare professionals take a pretty casual approach to these brain altering chemicals.
I have recently licensed my community moderation training package to Cardiff Women’s Aid. As part of this three-year licence, they received an initial training session and feedback on participants practice activities, bespoke training resources and trainer’s notes, a train the trainer Skype session and a draft moderation handbook for their ongoing use. I have also been happy to offer ad hoc suggestions and support around moderation and management as they develop their new online community SHOUT.
SHOUT is for survivors of violence against women in Cardiff and the surrounding areas. The name stands for Surviving through Hope, Openness, Understanding and Trust, with these values as their guiding principles.
I ran the initial training session for seven survivors and the community engagement project worker (who will be running the training in future).
After introductions we covered:
An exploration of the advantages and disadvantages of online support for both moderators and members.
An introduction to community moderation – thinking about what it is, what moderators do and how community members might be involved in moderation too.
Skills for moderation – emotional support and listening online.
Skills for moderation – using language effectively.
Skills for moderation – signposting and awareness of barriers to support.
Using personal experience effectively.
Community guidelines and managing posts and reports.
Looking after yourself while moderating.
Identifying bad practice.
Although we touched on safeguarding and confidentiality, this will be covered in more detail in a further training session run by CWA. In this session, they will also look at the technical side of the community (something that wasn’t finalised at this stage).
I also provided a practice activity that participants could do in their own time for some extra feedback.
It was a great day and the volunteers were all really enthusiastic and engaged. I’m really looking forward to hearing more about how it goes when CWA launch the community in a few weeks.
Clare created fantastic bespoke moderator training and helped us develop our brand-new survivors’ community. She went out of her way to ensure that the training met our needs exactly by engaging in various in-depth discussions and learning about our sector. But beyond that, she also helped us to build our vision for the community and the community guidelines; created an editable handbook for our future use and changing needs as the community grows; and offered ongoing support with tweaking the training as the forum develops.
The training itself was simple to understand but well-rounded and very comprehensive. Our moderators told us they thought the session was very positive, interesting, inclusive and approachable, and that the mix between group discussions and presentation was very helpful.
Clare was great to work with: patient, understanding and thorough. The training she developed and delivered was exactly what we needed. I couldn’t recommend her highly enough.
Venice Fielding – Community Engagement Project Worker – Women’s Aid Cardiff
The WRISK project is a collaboration between the British Pregnancy Advisory Service (bpas) and Heather Trickey at the School of Social Sciences at Cardiff University. They are aiming to draw on women’s experiences to understand and improve the development and communication of risk messages in pregnancy.
They asked me to blog about my experience of taking (and trying to stop) antidepressants before conception, during and after pregnancy. I was happy to oblige. I was given conflicting and simplistic advice from various GPs. They failed to give proper weight to the complexity of my experience and used the concept of risk to make me feel guilty and disempowered. This needs to change and I’m glad to support the WRISK project in trying to do so.
In 2013 I ran a training session for Action on Postpartum Psychosis on giving peer support online as part of their award-winning peer support programme. I’ve been working with them ever since. I’ve done a further five training sessions, including one when heavily pregnant and another four months after Oaklan was born.
Now my maternity leave is over, I’m doing some more long-term projects with them. I’m developing a new Insider Guide ‘Being a Parent after Postpartum Psychosis’. As part of this guide, we hope to create some resources to help parents talk to their children about their experience. We will publish the resources to coincide with the general release of the film Irene’s Ghost (a documentary I have been lucky enough to see already and very much recommend).