Beyond Peer Support: Twitter and Perinatal Mental Health

By Laura Wood, mum with lived experience who campaigns for better perinatal mental health, @cooksferryqueen

Laura has created a Twitter tutorial to help professionals working in the sector to make the most of Twitter for perinatal mental health. Here, she blogs about her story and how online peer support has helped her and others.

A month or so after my son’s traumatic birth in February 2014, I unravelled quite suddenly, and I had no idea what was happening to me. I was experiencing flashbacks, violent intrusive thoughts, and suicidal impulses. I was completely all over the place, and I was terrified. I was aware of postnatal depression, but I also knew that I wasn’t depressed. A friend introduced me to Rosey Adams on Twitter. Rosey, at that time, was solo parenting three small children on a remote Scottish island. After suffering from PND herself, she had established #PNDHour, a weekly Twitter chat which grew into a close network known as the #PNDFamily. It was Rosey, not any of the healthcare professionals supposedly caring for me, who explained to me about birth trauma. It was Rosey who persuaded me to go to a friend’s house where I would be safe, when I went AWOL in the middle of the night. It was Rosey, and other mums online, who walked with me through the terrifying fortnight before I was admitted to the Mother and Baby Unit.

The #PNDFamily community originated as online peer support for women and families who are or have been affected by perinatal mental illness. Many mums have since described this as a lifeline and have written about how this has assisted their recovery: you can find examples here, here, and here. Brené Brown wrote that the most powerful words in a struggle are “Me too,” and to know that we are not alone means so much. We have found connection, encouragement, and inspiration in one another. Over time, we have been joined by more and more midwives, health visitors, GPs, psychologists, psychiatrists, campaigners, and indeed people from all walks of life with an interest in parental mental health. The focus has shifted to campaigning, awareness-raising, and improving services, alongside peer support. Many other chats, hashtags, and projects have sprung up, and perinatal mental health on Twitter now extends far beyond any one initiative.

Six months after I left the Mother and Baby Unit, Rosey called for guest posts on her blog and I responded, full of self-doubt. I was completely overwhelmed by the responses to that blog post on social media, as strangers were sharing it and contacting me to say how it had struck a chord. From there, my own blog took off, and I have written for many other blogs and projects since, as well as given talks in person and helped out in various other ways. This work of improving care for mothers in the future has redeemed my own experience. The perinatal mental health community has given me a voice, as well as a close circle of friends who understand the unique challenges faced by mothers who battle with their mental health.

I was delighted to attend the MABIM masterclass on specialist perinatal mental health services in October 2016, and “Do you tweet?” was a question I overheard more than once amongst participants. When some at the masterclass mentioned that they were daunted or confused by Twitter, it was suggested that I wrote a Twitter tutorial to demystify it. The tutorial can be downloaded here. It’s intended as a step-by-step guide for those who just want to ‘have a look’ as well as those who are keen to jump in with both feet and start campaigning on perinatal mental health. It outlines some of the most popular regular chats and hashtags for perinatal mental health as well as the use of Twitter more generally. I hope it’s helpful, and I would love to hear your feedback and answer any questions.

The usefulness of an online perinatal mental health community extends beyond peer support. It helps healthcare professionals to share resources, contacts, and information. More than this, it facilitates collaboration between healthcare professionals and parents with lived experience, between two different types of expertise. Parents are being asked more and more to sit on advisory groups, to speak to NHS commissioners, and to help deliver training.

I hope, when I can find the time, to set up a tool to connect healthcare professionals who pioneer new or improved services, such as those at the MABIM leaders’ masterclass, with parent ambassadors in their local area. This is not just to ‘wheel them out’ because we must be wary of an ‘us vs. them’ attitude which undermines the contribution of either group. Respectful listening on both sides is key, as is understanding that the boundary between parents and professionals is a fluid one: many people are both!

I believe that, done well, this collaboration has tremendous potential to enhance our understanding of perinatal mental illness and to affect lasting change, both in the NHS and society as a whole. Together we will revolutionise the care we give to new mothers in this country and elsewhere.