Hull and the East Riding is at the forefront of offering specialist support to pregnant women frightened of giving birth – having become one of the first areas outside London to provide dedicated care.
Humber Teaching NHS Foundation Trust, Hull University Teaching Hospitals NHS Trust, and perinatal mental health researchers at the University of Hull have worked in collaboration with patient representatives to develop an evidence informed pathway of care to help women with tokophobia, which is a debilitating and overwhelming fear of giving birth.
Women who express significant fear of childbirth at their booking appointment may have symptoms of tokophobia and will be seen by midwives who can offer advice and education, refer them to specialist midwives, for psychological/emotional help, or to the specialist perinatal mental health team.
These women may benefit from birth education classes or one-to-one support to prepare them for birth, with continued input from maternity and mental health services.
A consultant obstetrician will review the woman’s care at around 28 weeks into the pregnancy. This is to begin planning and reach a decision over the best way for her to give birth. This decision will be made jointly with the woman and the health teams looking after her.
Lesley Robson, Specialist Midwife for Vulnerable Women at Hull Women and Children’s Hospital, said: “We want to show women that we know this condition exists and that we take it very seriously. We are the second place in the country to have this pathway in place for women with a deep-seated and very real fear of giving birth. Women with tokophobia should be assured that Hull and the East Riding have the skills, understanding and expertise to support them throughout their pregnancies.”
Fear of birth exists on a continuum and whilst it is common for women to feel anxious or afraid of giving birth, tokophobia is a rare and severe, but recognised, mental health condition. It can make women so frightened of giving birth that they don’t want to go through with the pregnancy, even though they long for a baby.
Tokophobia appears to be more common in women who have experienced anxiety or depression in the past, had gynaecological problems, neonatal loss, experienced sexual abuse, or if they have heard worrying birth stories from people in their own family or in the media.
Current research suggests that around seven per cent of women may experience this condition.
Although some women have a severe fear of childbirth after a previous traumatic birth experience, these women may be experiencing post-traumatic stress disorder, dependent upon their symptoms. The experienced clinicians within the Humber Teaching NHS Foundation Trusts perinatal mental health liaison team are able to help determine the nature of the woman’s problems and develop a supportive treatment plan with her and her family, and in collaboration with the other specialists involved in the woman’s care.
Midwives will be given additional training to follow a consistent approach which ensures the women get the help they need at the earliest opportunity.
The Tokophobia pathway will be launched at a training event for professionals at the Medical Education Centre in Hull, on Wednesday 11th September 2019 with the event being opened by Julie Jomeen, Professor of Midwifery and Dean of the Faculty of Health Sciences, and Colin Martin, Professor of Perinatal Mental Health, both from the University of Hull. The event has been collaboratively funded by University of Hull’s Ferens Education Trust, the Society for Reproductive and Infant Psychology (SRIP) and Hull University Teaching Hospital NHS.
A further event has been arranged, hosted and funded by the University of Hull and SRIP to be held on Thursday 12 September 2019, which will be an international panel of fear of childbirth experts (including researchers, experts by experience, academics, and clinicians) to develop clear agreement on tokophobia assessment/ diagnosis and treatment and identify research priorities and service development.
Catriona Jones, Senior Research Fellow in Maternal and Reproductive Health at the University of Hull, said: “Ultimately, this pioneering work, which is at the forefront of fear of childbirth service provision and research in the UK, aims to ensure that women get the right support, and that their psychological and pregnancy needs are addressed. The aim of the pathway is not to reduce caesarean section rates directly, however, based on previous recent cases of tokophobia, we should not rule out the potential of the pathway in terms of helping women with an overwhelming fear to rethink the idea that caesarean section is their only option.”
Women and their partners will also be able to find out more about the treatment pathway and how the trust can help to support women with the condition at the monthly HEY Baby Carousel events, which take place on the last Wednesday of every month at the Clinical Skills Building.
Lesley Robson said: “Despite recent advances, there is still stigma surrounding mental health support and women are often too frightened to tell us about the extent of their feelings and fears. Working with both the perinatal mental health and primary mental health teams can be of great help to a woman with tokophobia, which could hopefully lead to a more positive experience in pregnancy and post-natal period.”
The development of the tokophobia pathway is part of a larger programme of perinatal mental health research, operating between Humber Teaching NHS Foundation Trust, University of Hull and Hull University Teaching Hospitals NHS Trust for 15 years. This programme of work, overseen by Professor Julie Jomeen, Dean of Faculty of Health Sciences at the University, has distinct relevance to contemporary clinical and service development. The University of Hull has an international reputation for research and strategy work in perinatal mental health supported by a strong record of publication, conference and invited papers.
The main messages coming from this work should be the provision of consistently high quality care for all women, with collaboration from partner agencies to ensure the best outcomes for women and their families when it comes to their maternity and birth experience, taking into account short and long term needs of the woman and her family.