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.
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’ve written more about the work I did on the project here. The next step is to work with the Royal Colleges to accredit the resources. I’m currently researching the different options and approaches to accreditation at the different colleges.
Sorry about the picture…noone wants Trump on their blog…
Skimming through the British Medical Journal, I came across a blog called Breaking bad news in maternity care. It’s a lovely piece about the new learning resources I worked on with the Miscarriage Association.
I coordinated the development of these resources, working with the National Director of the Miscarriage Association, the Media Trust and lots of service users and health professionals. Mary Higgins describes them as strong, powerful, upsetting and thought provoking with important learning points. I’m pretty pleased with that.
The resources are online now although we’re not launching them officially until the new Miscarriage Association website is live. But it’s great to see that health professionals are finding them useful already.
There are six films – one each for ambulance crews, A&E staff, GPs and booking in staff supporting women with pregnancy loss and two for anyone talking to women about management of miscarriage and what happens to the remains of their baby. Each one is accompanied by a good practice guide.
I created a short survey for women and their partners. It asked them the top three things they would like to tell the relevant health professional about their care – and had a free text box too. In the BMJ blog Mary Higgins writes ‘what I say will be remembered for the rest of their life’. And it’s true. Most women who responded remembered exactly what they were told – good or bad – even after 10 or 15 years. It’s so important to get it right.
I also surveyed health professionals to find out what they and their colleagues found hardest about these situations and where they would like more training.
I wrote a report on each of these six areas, identifying key learning points and pulling out quotes and experiences we should highlight.
“People said it was lucky really. I don’t know how to deal with that”
This quote was one of many we gathered from young women we spoke to during the youth project consultation process I ran for the Miscarriage Association. It highlighted the need for additional support resources that reflected the experiences of younger people.
Young women told us about dealing with miscarriage after an unplanned pregnancy, finding themselves isolated and unable to speak to parents or partners, turning only to friends for support and experiencing difficult reactions from hospital and nursing staff.
And now I’m excited to help the Miscarriage Association launch the resources we developed as a result.
A soft launch at Primary Care 2015
It seemed appropriate to soft launch the resources at the Primary Care conference in Birmingham. It was here, last year, that community midwives and school nurses asked for more specialist resources for younger women. The Miscarriage Association’s National Director Ruth, some wonderful volunteers and I spent two days spreading the word about the Miscarriage Association and sharing our new resources.
They were universally well received and we sent boxes worth of leaflets out into the world as well as showing our new films (created for us by Rob Mitchell of MadCutta films) and chatting to anyone who would listen about what we were up to. It was wonderful to see how many people benefitted from the work the Miscarriage Association does – professionally but also in some cases personally. Continue reading →
Stage 1 – Online and face to face workshops with young people
“I’ve honestly literally never spoken about my experience with anyone since I left sixth form, this is the first (and possibly last) time – but I’m happy that I’m using it to hopefully help others”
I was recently approached by the Miscarriage Association to help them research and develop youth friendly online (and possibly offline) resources. Young peoples’ voices are missing and their needs are not being fully met by the Miscarriage Association’s current offering. But before we decided what to develop, we needed to do some research to find out a bit more about what young people were experiencing, what they want and – most importantly – why they want it.
Knowing WHY helps us get a deeper understanding of the need. Knowing that a young person wants online videos is one thing, knowing that they want them because they feel alone in their experience and want something to help reduce this isolation is much richer information. If we know this, we are in a position to find the very best way to meet this need.
Our hope was that the young people we worked with in this research phase would become engaged enough to stay involved and work with us through the development phases too.
Working in partnership
Our first step was to approach Brook. We’d identified that they had little online information about miscarriage and knew that for many young people Brook would be the first port of call when they needed help with pregnancy loss. Brook are redeveloping their website and resources so it made sense to work in partnership to share learning and ensure that young people were supported at every stage of their support-seeking journey. Continue reading →