Written evidence from Juliet Albert, Specialist FGM Midwife, Imperial College Healthcare NHS Trust [FGM0002]
I am specialist Midwife and Trust lead for women with Female Genital Mutilation (FGM) at Imperial College Healthcare NHS Trust and run the Sunflower Clinics – for pregnant and non-pregnant FGM survivors. Our services see approximately 600 pregnant women annually and 100 non-pregnant women.
I have been campaigning to improve FGM services since 1998. In 2008, I set up the 1st community-based clinic dedicated solely to non-pregnant women, the Acton community well woman clinic. We have performed over 1000 deinfibulations under local anaesthetic and fast track women into hospital for deinfibulation under general anaesthetic. Women can self-refer and there are no geographical boundaries.
I was seconded as FGM project manager for the Department of Health’s FGM Prevention Programme from 2015 to 2017;
I worked for Barnardo’s National FGM Centre from 2017 -2019 and trained the NSPCC FGM helpline.
I currently co-chair the national FGM health network – an independent network of FGM experts that meet quarterly.
I founded and currently lead ACERS_UK – a female-led voluntary collective advocating for research and access to FGM reconstruction surgery in the UK
I am in my final year (write=up stage) of an NIHR funded Doctoral Clinical Academic Fellowship (PhD at Nottingham university) exploring UK FGM specialist service provision
PhD findings (unpublished) – Overview of UK FGM specialist service provision
Worldwide an estimated 230 million women and girls have FGM (5% of global female population) (1). More than 140,000 FGM survivors living in the UK, predominantly from racially minoritised under-served communities (2). FGM survivors are frequently asylum seekers or first-generation immigrants mostly originating from Africa, the Middle East, and parts of Asia. Some were born in the UK and taken abroad to be cut, but most women were cut prior to arriving in the UK. Between 2015 and 2023, NHS Digital identified 85,575 FGM-related healthcare attendances in England.(3)
Health problems caused by FGM cost the NHS approximately £100 million annually, approximately 65% from psychological and psychosexual problems and 33% attributed to long term health consequences (4).
Types 1 & 2 - Long-term consequences include urinary tract and genital infections, difficulty passing urine and menstrual blood, sexual health problems including decreased desire and pleasure, painful sexual intercourse, decreased lubrication, reduced frequency or absence of orgasm, excessive scar formation, childbirth complications, and psychological challenges, including post-traumatic stress disorder, anxiety and depression and body dysmorphia (5).
Type 3 - urinary tract and genital infections, difficulty passing urine and menstrual blood, painful sexual intercourse or unable to have sexual penetration.
Childbirth complications – obstruction of fetal head resulting in fetal death / asphyxiation / complex tearing – particularly women from East Africa - Sudan, Somalia, Eritrea, Ethiopia, Kenya
Deinfibulation = opening surgery for women with Type 3 (who are closed)
Many women also present with cysts and abscesses at the site where the clitoral glans (external tip of the clitoris) has been removed.
Psychological impacts - anxiety, depression, PTSD, touch and needle phobia, flashbacks, sexual dysfunction. Body image concerns (not feeling whole, normal, complete)
More than 30% of women have suffered other intersectional violence such as rape, forced early marriage, domestic violence, juju/witchcraft, torture and fleeing from war.
“A lot of shame and stigma. A lot of divorce in societies that practice circumcision and marital infidelity as women suffer pain during intercourse and feel that they don’t look whole or normal.“
• 28 specialist clinics across the UK. Services are focused upon maternity care for pregnant women. 75% Midwife-led; 25% Doctor-led. All Female-led; some diaspora-led.
• Geographical variability (e.g. No clinic in N. Ireland; 1 in Wales; 1 in Scotland; 13 in London;) Women sometimes having to travel long distances to access services
• 15 clinics for non-pregnant women (but 5 of these see < 2 non-pregnant women per year). Services often “cobbled together” = Not properly commissioned.
• 2 services are dedicated solely for adult non-pregnant women (Bristol Rose clinic & Leeds community clinic). Clinics see women across the life course from 18 to mid-60’s. Menopausal women. Service provision for teenagers is lacking. Paediatric care also variable as expertise limited.
In 2019 NHS England set up 5 new community-based clinics for non-pregnant women (based in high prevalence areas – Croydon community clinic, Birmingham Summerfield community, Leeds community clinic, Brent community clinic, Waaha clinic in Waltham Forest). modelled upon the Acton clinic. Tri-partite model (midwife/doctor service lead + health advocate + trauma counsellor) Accepting self-referrals, no geographical boundaries, female-led, fast-track, walk-in, - ACCESSIBLE
2021 NHSE withdrew funding for IBC’s to take over commissioning of services.
Since then, Waaha clinic closed. Brent clinic forced to move into the hospital setting. Birmingham clinic under threat of closure for a year of uncertainty – just been informed that has funding now until 2027.
• Provision of multidisciplinary care:-
• Variable standards of care across UK - Some examples of centres of excellence with a specialist multidisciplinary team (Service lead + trauma counsellor + health advocates/interpreters) e.g. Sunflower clinic, Croydon clinic, Birmingham Summerfield community clinic, Oxford Rose clinic, Bristol Rose GP clinic, Leeds community clinic.
• 1/3 of midwife-led services is midwife working alone
• 5 services have co-located trauma counsellor & 13 have a direct referral pathway to trauma counselling
• Only 3 services in UK have psychosexual therapist (Oxford, Manchester and Mile End)
• 10 services (35%) with NO counselling support
• Every woman should be offered FGM diagnosis + safeguarding assessments + FGM health consequences information. Some provide:- vulval & clitoral anatomy & physiology education; sexual relationships discussion, human rights, law in UK, Failure to Protect explanation, medical reports for asylum applications
• Treatment options – trauma counselling; psychosexual counselling; deinfibulation; cyst removal; reconstruction surgery (not available in UK)
• Most offer fast track deinfibulation (opening surgery) for Type 3 FGM – but some glaring disparities. In Sheffield pregnant women cannot access deinfibulation during pregnancy and have to wait until labour. In Edinburgh, Bristol and Cardiff women who want deinfibulation under general anaesthetic are referred from specialist service into general gynaecological surgery and have long wait on a general gynae waiting list.
• 1/3 of services offer cervical screening
• FGM survivors are not one homogenous group – women with all different Types of FGM and from all different ethnic backgrounds. Need person-centred care. Women are from minoritized populations, and many with English as a 2nd language.
We need 3 levels of training for health staff: -
(1) Admin & clerical & porters need basic training . E learning for health - but must be mandatory!
(2) All patient facing healthcare professionals need mandatory FGM training
(3) Expert FGM training for gynaecologist/obstetricians, Gum clinic staff, sexual health, midwives, health visitors
All interviewed women want safe female-led spaces with health advocates and expert trauma and psychosexual counsellors
Women often don’t know specialist services exist
Yes, women are already scared they will have to pay for deinfibulation
This is about informed choice and how we support women’s mental and physical health
At present reconstruction surgery does not exist within the UK but is available in many countries in Europe (Spain, France, Germany, Italy, Belgium, Switzerland, Sweden, Netherlands), Africa (Kenya, Burkina Faso, Egypt), and parts of USA. Reconstruction has been available in Europe since 1998 and, in France alone, more than 6,000 women have had reconstruction surgery. Some UK women have even travelled abroad to have this.
In the NHS, genital reconstruction is currently offered for gender reassignment / feminising surgery and vulval cancer survivors. We have the technical expertise already. This is about equity – why cannot FGM survivors’ access this? This is a necessity. It is not cosmetic.
Several studies have evaluated safety and clinical effectiveness (14-20)and there is increasing evidence that FGM reconstruction can treat genital pain, improve sexual pleasure, and help with body image concerns which in the long term may improve marital/sexual relationships, quality of life and reduce psychological problems.
Furthermore, several UK academic publications have reported that women want information and services relating to reconstructive surgery (21-24).
In 2016 the World Health Organisation (WHO) stated: -
“Evidence indicates that reconstructive clitoral surgery can improve chronic clitoral pain as well as dyspareunia among women who have had clitoral tissue damaged due to FGM. However, there is little evidence regarding the safety and effectiveness of this surgical procedure in improving women’s sexual health”.
They concluded “strongly encourage further research”.
The Royal College of Obstetricians and Gynaecologist (RCOG), 2023 stated: “The RCOG is supportive of further research into the role of reconstructive surgery for women affected by FGM.” (25)
In response to the statement that there isn’t enough evidence to support reconstruction surgery:
(1) What is enough evidence? This surgery has been in existence since 1998. Lots of other countries provide reconstruction surgery and have produced evidence proving that it often has benefits and complications are rare ; we have the technical know how - as we are doing reconstruction surgery already for vulval cancer patients and male to female gender reassignment
(2) If a man’s penis was cut in half (and this is the equivalent to the top of a woman’s clitoris being cut out, as it is during FGM) - and surgery was available to reconstruct it - I don’t suppose the men would appreciate being told to wait for more evidence!
(3)The only way to contribute to this research is by providing a service and researching it!
(4)The RCOG Vice President does not speak for all consultant obstetricians and gynaecologists.
In 2021 I set up ACERS-UK (Advocating for Access to Reconstruction Surgery and Emotional Support for FGM survivors).
We are a female-led voluntary collective of FGM experts, including FGM survivors, charity workers, and healthcare professionals. Our aim is to set up a national centre of excellence offering FGM reconstruction surgery integrated with psychosexual assessment and therapy for FGM survivors and to conduct a co-designed clinical trial so that we contribute towards the evidence base through stakeholder consultation, evidence publication, and parliamentary advocacy. We are supported by several FGM charities/NGO’s including FORWARDUK, Manor Gardens, IKWRO, Sister Circle, Oxford against Cutting, Midaye, Barnardo’s National FGM Centre and the Vavengers.
We published a Scoping review of the evidence around reconstruction surgery in 2024 in British Journal of Obstetricians and Gynaecologists (BJOG). We found “7,274 women underwent some form of reconstruction. Post- surgery improvement was reported in 94% of the cases. The complication rate was 3%” and concluded “reconstructive surgery improves quality of life, satisfaction with vulval appearance and sexual function in survivors of FGM. However, the level of evidence is low and more research is urgently needed.”(26)
We have partnered with Oxford Surgical Trials Unit and have applied for an National institute of Health Research (NIHR) Research for Patient Benefit (RfPB) grant proposing a feasibility study examining:
“Is it feasible to recruit and randomise women with Female Genital Mutilation (FGM) to a clinical trial comparing Best Conservative Care (BCC) with BCC plus clitoral reconstruction surgery?”
Best Conservative Care = 10 sessions of trauma therapy followed by 10 sessions of psychosexual therapy. (Therapy sessions include assessment and education with specialaist FGM health advocates acting as interpreters to translate as required).
There is evidence that when some women receive trauma and psychosexual therapy, they then no long want reconstruction surgery. This is why we have designed a study where all women will receive Best Conservative Care and where surgery is the last resort (called our ladder of intervention).(27)
Our stage 1 application was submitted on March 5th, 2025. We find out in July 2025 whether we have progressed to the second stage. We will hear in November 2025 whether the clinical trial will be funded.
Although the NIHR is a public funded body there is no guarantee that this funding application will be successful.
• Although not all women with FGM will want or benefit from reconstruction surgery, women should be informed of the benefits and risks of surgery and should be able to make an informed choice to access this if they wish.
• The UK should be contributing to this area of research, developing new surgical techniques, and keeping abreast with the rest of Europe.
• There are risks associated with women accessing surgery abroad or seeking unregulated reconstruction surgery in the UK private sector.
Other members of ACERS_UK: -
Janet Barter - President of the Faculty of Sexual and Reproductive Health leads Mile End FGM clinic
Dalia Saidan – Consultant Uro-gynaecologist leads Croydon Calabash FGM community clinic
Aurora Almadori – Consultant plastic surgeon, Royal Free Hospital
Huda Mohamed - FGM specialist midwife, Whittington Hospital
Alison Byrne – Specialist FGM midwife Birmingham Summerfield community clinic
Brenda Kelly – Consultant Obstetrician/Gynaecologist – Oxford Rose FGM clinic
Tina Rashid – Consultant Feminizing/Gender reassignment surgeon, Urologist- Chelsea & Westminster
Professor Vik Khullar –Consultant Uro-gynaecologist, Imperial College Healthcare NHS Trust
A reconstruction service is not expensive, this is day-case surgery that takes approximately one hour, is not life threatening and we already have the expertise!
Plan:
If the clinical trial is successful, we will apply for funding for a bigger definitive trial. This will involve setting up two national centres of excellent offering reconstruction surgery – one in London, one in Birmingham/Manchester
Care pathway includes 10 trauma plus 10 psychosexual assessment, education and therapy sessions (with specilaist health advocate interpreters to translate as required).
There is currently no tariff for FGM reconstruction surgery
We used this generic tariff to cost a serivce - Higher Tariff: MA04C (Intermediate Open Lower Genital Tract Procedures with CC Score 3+)
£2,585 * 1.176907 = £3,042.30 for recosntruction surgery for 1 person.
This includes the cost of theatre space, anaesethetist, surgeon, operating department assistant, day case surgery bed, theatre equpment etc.
We costed 10 traumasessions plus 10 psychosexual sessions @ £3,372.30 per person
Therefore for 50 patients = £6,414.60 per person x 50
= Total cost £320,730 potentially over one year.
• UK national prevlance statistics were collated in 2014 and have not been updated.
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March 2025