In May 2023, Shamsa Araweelo was in the A&E department of a London hospital in excruciating pain. It wasn’t the first time she had sought urgent treatment for the gynaecological damage caused by the female genital mutilation (FGM), or cutting, forced on her as a six-year-old. In fact, this was one of many such visits to emergency departments that Araweelo had made in her desperate attempt to find a surgeon who could help undo the damage done to her as a child and which has caused her so much pain and trauma as an adult.
Araweelo says that in A&E she was told that she had severe nerve damage and that it could be reversed through reconstructive surgery. But not in the UK.
“No doctor in the country will touch you, because you are an FGM survivor,” Araweelo says she was told. “I felt no compassion, no respect. Only in London did they tell me they wished they had the appropriate training to help me, and it breaks my heart. We are not valued in the UK.”
There are thousands of FGM survivors like Araweelo across the country. In 2011, the Home Office data estimated there were 137,000 people living with FGM in England and Wales, but with more than 5,800 survivors newly identified by the NHS between April 2022 and March 2023, the numbers could be much higher.
In 2014, the government and NHS England launched a £1.4m FGM prevention programme to educate healthcare professionals, and NHS guidance states that such professionals should seek to support women by “offering referral to community groups for support, clinical intervention or other services as appropriate, for example through an NHS FGM clinic”. Yet this year, nearly a decade later, an independent report carried out by the Vavengers – a London-based charity fighting FGM - showed that two thirds of the 670 NHS staff surveyed reported receiving either no or minimal training on how to deal with survivors.
Araweelo says that in all the years she has sought help she has never been offered any kind of support from medical professionals.
She was only six when she was subjected to type III FGM in a small town in Somalia. Otherwise known as infibulation, the cutting removed both her labia and clitoris and the remaining skin was then stitched together. For years, Araweelo thought that what she was subjected to as a child was an act of purification, yet years of pain, trauma and infection have blighted her life since.
At 14, when she first began to experience tearing and infections, her mother took her to a GP who examined her, identified her as a “likely” survivor of FGM and sent her home with paracetamol but no follow up or specialist referrals.
“I genuinely believe that I was failed as a teenager by medical professionals, by doctors who have physically examined me and did nothing about it,” says Araweelo. “I did not know that there are services out there that could have prevented me from ripping or could have helped with my mental wellbeing. I don’t know if they’re trying to be culturally appropriate, but they choose to turn a blind eye.”
As an adult, Araweelo has spent years trying to find options for reconstructive surgery, which for her and many other FGM survivors is the only solution for the ongoing physical, emotional, reproductive and mental health problems that can have catastrophic effects on their lives. Yet, unlike in other countries across the EU, there is no provision for reconstructive surgery in the UK.
Charities, pressure groups and FGM experts say that the UK is lagging far behind in offering survivors surgical reconstruction. There are now 26 clinics across 11 different European countries offering reconstructive surgery to FGM victims.
Many groups believe that British doctors already possess the required skills to perform such surgeries on survivors but that their injuries are simply not being considered a priority.
Dr Aurora Almadori is a plastic surgeon in the NHS, specialised in scar management and innovative therapy for treatment of vulva scarring: “From a technical and surgical point of view, it’s not very difficult to perform these surgeries. These surgical techniques are available, clitoris reconstruction and labia reconstruction are available in the NHS, in the UK, not only for gender affirming surgery but also for conditions like lichen sclerosus, but not for FGM. It’s discriminatory to not give access to certain surgical techniques.”
NHS England released a report in 2015 that said was not enough international evidence to support reconstructive surgery for FGM victims in England.
An NHS spokesperson told the Guardian: “The NHS has not commissioned FGM reconstructive surgery following recommendations from clinicians and due to the very limited research evidence available to safely offer this procedure. The NHS is committed to supporting FGM survivors, including rolling out specialist clinics which were designed with survivors and advocates so that they could offer a range of support to women and their families who had suffered from this awful abuse.”
Juliet Albert, an FGM specialist midwife who co-leads the UK FGM Restore project aimed at offering reconstructive surgeries for survivors, argues that surgeries carried out on UK citizens in foreign countries could still become an issue for the NHS if complications arise in aftercare.
“If something goes wrong, that’s a burden to the NHS, and if they can’t pay for the surgery, we have to care for the psychological consequences,” says Albert. “We have to challenge the current research leaders. A plastic surgeon on our project already does labia surgery, there’s a gender reassignment surgeon, it’s just a matter of putting them all in the same room, and having the surgery commissioned [by policy makers].”
Research in 2019 concluded that the cost to the NHS of patient care for those people who have sought plastic surgery services abroad is between £862 and £10,520 per patient.
“There is a lack of justice in health inequity,” says Albert. “Women with FGM don’t shout the loudest, they’re very often invisible. I’m sure if it was a different group of women who wanted the surgery we would have had it by now.”
UK FGM Restore is working towards offering survivors reconstructive surgery while also giving psychological and psychosexual support. Albert says she hopes this will convince policy makers in the NHS to establish a national centre of excellence to provide surgery as a treatment option for survivors.
Araweelo has finally had reconstructive surgery in Germany. She has fundraised and asked for donations to cover the costs.
From her hospital bed, Araweelo says she is finally getting closure. Her voice sounds hoarse but cheerful. “I can’t feel that [pain] and irritation that I used to feel, I am numb for now,” she says. “But the big difference is now I feel safe.”
• This article was amended on 21 and 22 December 2023. An earlier version said, “NHS rules state that if a health practitioner suspects a patient has been cut, they must report the case to the police”. In fact, this reporting duty applies only where FGM is identified in children under 18; there is no requirement for the automatic referral of adult women. The main image was also correctly credited to Josh Finche Photography.
