The Birth Trauma Association – a small charity punching above its weight
The Birth Trauma Association (BTA) began life in 2004 when two dedicated women, Debbie Sayers and Maureen Treadwell, decided it was time to tackle the lack of support for women experiencing postnatal PTSD. Maureen is still very active in the BTA and now has the role of research officer.
We’re a very small charity, relying entirely on volunteers, but we punch above our weight. Although there are other organisations that support women with perinatal mental health problems, as well as those that campaign on women’s rights during birth, there is no one performing exactly the same role as us. Our aims are to provide support for women who have had a traumatic birth and their partners, campaign for better treatment for women with birth trauma and work with policy makers to improve women’s experience of giving birth so that fewer women develop postnatal PTSD.
Most people who are aware of us know us through our Facebook group, which enables women who have experienced birth trauma, and their partners, to access peer support. The group has grown rapidly in the last year or so, and experienced a big membership boost after last year’s Awareness Week. It now has 6,200 members. We’ve become aware that health professionals sometimes signpost women to us – while we welcome that recognition from professionals, it is also a measure of the fact that there is currently so little support available from the NHS.
It can be very upsetting to read the stories our members post. Most have experienced very difficult births, typically, though not always, a lengthy labour ending with the baby being born by emergency caesarean section, or by forceps. Some have suffered debilitating physical injuries. When they tell their stories, however, it’s the lack of care that they most often emphasise: the dismissive attitude of health professionals when they tell them that something is wrong; an unwillingness to believe that a woman is in severe pain; the lack of kindness when a woman has been through a deeply traumatic experience, such as a postpartum haemorrhage; the failure to ask consent for certain procedures; and a reluctance to communicate, so that women often don’t know what is happening to them or why. It is no wonder that by the time women approach us, they have often reached a state of despair. We know that our members find the Facebook group find very helpful – they often tell us of their relief at finding they are not alone. Occasionally, women have said to us that the group saved their life.
Working for change
We’re much more than a Facebook group, however. We also answer emails that come into our enquiries inbox, responding to queries and offering advice about where people can seek therapeutic help. Longer-term, we would like to provide email and phone support and, eventually, face-to-face peer support groups.
An important part of our remit is to work for change, so we regularly make submissions to government consultations such as the National Maternity Review, or comment on proposals for changes to NICE guidelines. We also participate in the RCOG’s Women’s Voices Involvement Panel, and regularly give talks to midwives and obstetricians about birth trauma.
Currently one of our committee members, Gwyneth Eanor, sits as a lay member on the NICE working party for the postnatal care guideline (though not in an official BTA capacity, as this is against NICE rules). She is also a patient representative on the RCOG’s OASI (obstetric anal sphincter injury) care bundle project, which is looking at ways of reducing third and fourth-degree tears in childbirth.
Maureen Treadwell co-ordinates Maternity Outcomes Matter (MOMS), a national project to find ways of reducing adverse maternal and neonatal outcomes after childbirth. Other people involved in the project include Professor Michael Keighley, a clinician who specialises in treating anal sphincter injuries, Rosamund Rhodes-Kemp, a coroner, and Professor Alan Cameron, principal co-investigator on the RCOG’s Each Baby Counts project.
Raising awareness is a crucial part of what we do. Even now, a lot of people, including health professionals, aren’t aware that it’s possible to develop PTSD after a traumatic birth, so we work with the media to inform people about the condition. Last year’s Awareness Week was tremendously successful, and was covered by the Guardian, the BBC, HuffPo and Mumsnet, among others. We hope that this year’s Awareness Week, which runs from 1 July to 8 July, will again make more people aware of the condition and of the support we offer.
Finally, we are all conscious that, although we do our best, it isn’t enough: there is a huge unmet need out there. At a rough estimate, about 20,000 women a year experience postnatal PTSD, and most of those women aren’t receiving the help they need. We are working to raise funds and expand our offering, and we are always on the lookout for volunteers who can donate their time.
Kim is a member of the Make Birth Better network, you can contact her here