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Female Genital Mutilation (FGM) affects 230 million women worldwide and more than 130,000 women in the UK ().  It causes significant physical and mental health consequences and is a human rights violation.  Although illegal in the UK, FGM is still practised in some other countries, and many women (and children), who have mostly been cut elsewhere, currently live in the UK. The cost of FGM in the UK is estimated at £100 million, 65% of which is spent on mental healthcare ().

There has been very little research on the needs of women with FGM and the specialist services available to them in the UK.  An À¶Ý®ÊÓƵ funded study published in 2019 showed that services for women with FGM are few and precarious, with funding and commissioning arrangements extremely variable.

Juliet Albert (Specialist FGM midwife) was awarded a À¶Ý®ÊÓƵ Pre-doctoral Clinical Academic Fellowship (PCAF) in 2018 to develop the foundations for this research, which included an evaluation of the first ever specialist service for non-pregnant women in the UK. This examined referrals and interventions provided over an 11 year period and found that significant numbers of women required FGM specialist care.  This work led to a successful application for a À¶Ý®ÊÓƵ Doctoral Clinical Academic Fellowship (DCAF).

This research was developed to understand specialist service provision across the global North, with a particular focus on UK specialist FGM services.  It has enabled the first ever mapping of UK specialist services, through a mixed methods approach involving a survey of FGM services, interview study with FGM service leads and in-depth interviews with 29 women from across the UK.

Interviewed women all come from underserved and minority ethnic communities, including Somali, Eritrea, Sudan, Iraqi Kurdish, Gambia, Ethiopia, Nigeria and others.  Many speak little English, therefore several interviews were conducted in native languages with an interpreter.

Juliet’s doctoral research has recruited women from 10 centres across the UK, involving R&D leads, Clinical Research Networks and clinicians from England, Wales and Scotland (NB there are no current services in Northern Ireland). It will make recommendations for optimal FGM specialist services, including skill mix and standardised care guidance, information and educational resources.  These will include stronger engagement with local communities through the expertise of FGM specialists and health advocates within gynaecology and maternity departments, who are not only able to translate but can also build trusted relationships with underserved communities.  If these recommendations are implemented, FGM champions will be available in every maternity department, holding up to date knowledge and understanding of women’s health information needs. Findings also demonstrate that barriers to access specialist services and safeguarding policies can alienate FGM survivors. Co-production of resources, extending existing holistic models and engaging with community organisations will lead to improved specialist care for women across the UK.  The research will also recommend a new prevalence report, since the existing 2014 report is outdated. Importantly, the recommendations of this research aim to strengthen efforts towards FGM prevention, with significant impact on women and children from sub-Saharan African origins.

This research has also identified a significant gap in service provision in the UK, in that currently there are no options for women with FGM to access reconstructive surgery.  More and more women attending specialist clinics are asking for reconstruction, which is already available in several other European countries, parts of U.S.A. and Africa.

As a result, Juliet has developed a research collective, ‘ACERS_UK’, () including women with lived experience, surgeons, midwives, trauma and psychosexual therapists, academics, NGO charity members, artists and campaigners. They have conducted over 300 PPIE consultations, (including three national stakeholder ‘Zero Tolerance to FGM Day’ events and two focus group consultations) and now have a webpage on the Royal College of Midwives FGM network platform. Two papers have been published from this work, and it has led to an À¶Ý®ÊÓƵ RFPB application to develop and test the feasibility of a reconstructive service for women with FGM. The ACERS-UK work has involved international collaborations including representing the UK at an FGM reconstruction masterclasses conference in Geneva and meeting other national teams from Germany, Switzerland, Egypt, France etc; setting up a knowledge sharing event with clinicians from Belgium who met with UK psychosexual and trauma therapy experts; and several co-authored papers.  It also led to an invitation to present to the Women and Equality committee at the House of Commons.  Moreover, a successful grant application from the Urology Foundation facilitated the above work.