Postcode lottery for FGM provision in largest UK study of survivor experiences of healthcare

Research with 141 participants across multiple perspectives found few examples of excellent care, and significant social and cultural barriers to accessing care

Close up of a pad of paper that a doctor is taking notes with for a patient lying on a bed next to them

Survivors of female genital mutilation (FGM) have expressed concern over deficiencies in healthcare provision in many parts of the UK, in the largest study of its kind.

Newly published research produced by the Institute of Applied Health Research at the University of Birmingham reveals how survivors of FGM highlight a ‘postcode lottery’ of inconsistent healthcare provision across the UK.

In-depth interviews with 44 survivors of FGM found that while some pockets of excellent care were available, there were widespread reports of sub-optimal provision for both physical and particularly with mental health needs.

The report highlights examples of good practice, including where mental health support is available co-located alongside physical and legal support for survivors. However, many more survivors pointed to a need for information and access to mental health provision given their often-traumatic experiences.

Survivors highlighted that deinfibulation, a surgery to try to improve the health and wellbeing of some women affected by FGM, should ideally be available prior to pregnancy, but in many cases care provision and surgery was only available in maternity settings. As a result, significant social and cultural barriers within their communities exist that deter women from accessing FGM-related surgery and associated healthcare provision until during pregnancy.

This study goes a long way to recognising that many FGM survivors aren’t coming forward for treatment until that point [during maternity services] due to the significant barriers associated with accessing care in a maternity setting.

Dr Laura Jones

Dr Laura Jones from the Institute of Applied Health Research at the University of Birmingham and lead author of the report said:

“To our knowledge, this is the largest study of its kind to assess healthcare provision for women affected by FGM, healthcare professionals and those in the community around them. Through interviews and discussion groups we have seen that there are some examples of excellent care, where physical and mental health support is joined up and is provided in a context that is right for survivors. However, it’s the exception and not the norm currently.

“We know that about 80% of women who have suffered FGM and go onto receive healthcare treatment are identified via maternity services. This study goes a long way to recognising that many FGM survivors aren’t coming forward for treatment until that point due to the significant barriers associated with accessing care in a maternity setting.”

Current provision leading to silencing of survivors’ preferences

While survivors who took part in the study expressed a variety of preferences when it came to healthcare provision, rigid care pathways often prevented women from having choice.

The report, published in the National Institute for Health and Care Research’s Health Technology Assessment journal, highlights that FGM provision in many places around the UK does not always meet the needs of survivors and their families due to a lack of understanding among healthcare professionals about cultural and societal perspectives.

In particular, misunderstandings about the experiences of FGM survivors and their partners in relation to sexual intimacy, as well as the complex trauma associated with it, were identified as contributing to care driven by care practicalities over survivor preferences.

Profile picture of Mama Sylla, an FGM survivor.

Mama Sylla, an FGM survivor and campaigner against the practice.

Sylla’s story

Mama Sylla is an FGM survivor, community support worker and a mother of three including twin girls. Born and raised in Guinea, a country with the highest FGM prevalence (97%), Sylla was subjected to FGM at age 9 and grew up never questioning it.

In 2015, after getting pregnant with her first child, Sylla went for antenatal appointments where the fact that she had been cut was first mentioned. However, her experience of healthcare support was clinical at best.

Sylla explained: “There was no real talk about my FGM – the healthcare professionals did not ask me anything about it. When I then had my twin girls, the only time it was even mentioned was when the person who visited me at home needed to tick a box to make sure I knew my girls should not be cut.”

Her experience led her to work with LA FRATERNITÉ GUINEENNE, a grassroot organisation registered in England & Wales set up by a group of Guinean students that has pledged to fight against FGM in the UK and in Guinea. Now, Sylla is chairlady of the organisation and her work has led to engaging with charities including the British Red Cross; the UK Government’s Home Office, and with Heathrow Airport to tackle FGM and honour-based abuse.

Sylla shared how FGM is often not discussed or well understood by healthcare professionals she has seen:

“Prior to me being a mum, I had vaginal infections for years and anytime I go to my GP she prescribes pessaries for me to use, and she even referred me to a sexual health clinic but nothing serious was found.

“In 2018 when the Home Office was doing the campaign to end the practice each GP was asked to provide the number of FGM survivors they have seen every six months. After that, my GP contacted me and said that I was the only survivor in that GP - and now she realises that I was often going to her for the vaginal infections because of the FGM.”

Pockets of excellent practice around the country are highlighted though the report. One such example is the Sunflower Clinic in London which has been used as a model for a holistic women-centred model of care.

The Sunflower Clinic was set up in 2008, (originally called the Acton community well woman clinic) by a Midwife from Imperial College Healthcare NHS Trust and a Somali community health advocate from Ealing Primary Care Trust. The clinic is a specialist service for non-pregnant women, designed to reduce barriers to accessing care for FGM survivors.

The service offers diagnosis of FGM Type; walk-in, same-day opening (deinfibulation) surgery under local anaesthetic; trauma therapy; language and emotional support; medical reports for asylum seekers; safeguarding assessments; FGM prevention/education about the health consequences of FGM; and discussion around UK law.

Juliet Albert, a Specialist FGM Midwife who runs the Sunflower Clinic for Imperial College London NHS Trust said:

“Our model consists of an all-female team where a Midwife, Health Advocate and Counsellor all work together to offer holistic woman-centred care. Our service grew up out of the Acton community well woman clinic in recognition of the need that the community had for the service. However, specialist services are mostly situated in areas where there is a high prevalence of local FGM-affected communities residing and often only provide care for pregnant women.”

The study was funded by the National Institute for Health and Care Research’s Health Technology Assessment programme.

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Notes for editors

  • Citation: Jones, L., et al, 2023, Female Genital Mutilation: a qualitative study exploring the views of survivors, male partners and healthcare professionals on the timing of deinfibulation surgery (the FGM Sister Study), Health Technology Assessment, DOI: 10.3310/JHWE4771
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