The Acton Model: support for women with female genital mutilation

A typical consultation

For every consultation, the physical and psychological health consequences of each type of FGM are explained in detail using line drawings of the different types from the Daughters of Eve website. There is also discussion around UK law, that FGM is a human rights violation and form of child sexual abuse, of a woman's right to bodily integrity and sexual pleasure, and the difference between FGM and male circumcision. Barnardo's National FGM Centre world map is used to show the prevalence and law in the woman's country of origin.

Next, a detailed medical history is taken, documenting any symptoms related to FGM, and a genital assessment to diagnose the FGM type is offered. This can be done using a mirror if the woman wants to know exactly what has been cut. Questions asked include the following:

A safeguarding assessment is carried out to determine whether a children's social care or MR duty referral is required. The woman is asked:

The Serious Crime Act (2015) ‘failure to protect’ clause is also explained, to ensure parents are aware of their parental responsibility to protect their daughters from harm.

The next stage is completion of the NHS Enhanced dataset collection and sharing information with the woman's GP (with her consent).

Finally, management options are usually comprised of one or more of the following:

In September 2019, NHS England launched five new national FGM support clinics specifically for non-pregnant women, based upon the Acton model. They employ a health advocate and counsellor to work alongside the lead midwife, are community-based and women are seen within 2 weeks of referral. They are located in FGM high prevalence areas (Croydon, Brent, Waltham Forest, Birmingham and Leeds), and aim to provide services that are accessible and cost-effective. (NHS, 2019).

The Sunflower clinic data provides an important baseline for understanding referral and presentation to FGM clinics for non-pregnant women. To the authors' knowledge, no clinic data have been published since the introduction of the MR duty, which has changed the nature of FGM consultations for both healthcare professionals and members of the FGM practising community (Dixon et al, 2018). This service review was conducted to fill this gap and help inform the evaluation of the new national support clinics.

Sociodemographic characteristics

The majority of women lived locally but some women travelled considerable distances to attend the clinic. Nearly 16% (n=14) were from outside London, many of whom were recommended by relatives who were previous service users. Women came from as far as Plymouth (305km), Bolton (276km), Halifax (271km), Cardiff (244km) and Leicester (142km). Another 19% (n=17) came from south and east London, including Lewisham (22km), Bexley (31km) and Newham (23km). The majority (64%) came from the local catchment area of north and west London, 28% (n=25) from Ealing and 14% (n=13) from Brent.

The routes of referral into the clinic were recorded. A total of 29 women (33%) self-referred via the internet, telephone, WhatsApp or email, and were usually recommended by friends or family. Of the 32 referrals from healthcare professionals, 22 were from GPs (many of whom cited difficulties taking smear tests), and the remainder from midwives (n=6), psychologists (n=2), one health visitor and one from a British Pregnancy Advisory Service (BPAS) clinic. Additional referrals came from third sector organisations, including FORWARD (Foundation for Women's Health Research and Development), IKWRO (an Iranian and Kurdish Women's Rights organisation), Midaye (a Somali community charity), and Plymouth Migrant Legal Project and the Dahlia Project (a therapy service for FGM survivors). We also had seven social work referrals, five of which were from Barnardo'sNational FGM Centre.

Table 2 displays women's country of birth. Over half of the attendees were born in Somalia (54.5%). The next largest group was from Nigeria (12.5%), from various tribes, such as Yoruba, Agbo, Ebu, and Igbo. Both Iraqi women were of Kurdish origin. Two women were born in the UK and one was born in Holland. Most women had been living in the UK for many years. Overall, 11 women (12.5%) had been residents for between 26 and 30 years, whilst 19 women (21.6%) had lived in the UK for 5 years or less (Figure 2).

Women attending the clinic ranged from 18–61 years old (Table 3). The mean age was 34.5 years. One in every eight (12.5%) of the women spoke very little or no English. Nearly 60% of those asked said that they had never discussed FGM with a healthcare professional in detail before. Many were shocked, when looking at the diagrams of the different types of FGM, to discover the extent of damage that can be caused.

Diagnosis and clinical presentation

Over 52% (n=46) of women presenting to our clinic had intact type 3 FGM (Figure 3), whereas worldwide type 3 accounts for approximately 10% of all types of FGM (United Nations Population Fund [UNFPA], 2019). Many of the clients accessed the service because they wanted deinfibulation. All except one of the 46 women with type 3 FGM originated from East Africa. This correlates with WHO evidence demonstrating that infibulation is more common in parts of northeast Africa (WHO, 2020b). In common with other FGM analyses (Gordon et al, 2007), approximately 50% of the time the clitoral glans was intact for women with type 3. A total of 8 women were classified with having a ‘history of type 3’ as they had type 3 FGM initially as children but had since been deinfibulated, prior to attending the service. Some authors have talked of the FGM Type ‘changing to a Type 2’ (Abdulcadir et al, 2016) post-deinfibulation. However, recording this as ‘history of type 3’ ensures that other clinicians are immediately aware of the woman's history and the authors' believe that this therefore conveys a more accurate diagnosis. These eight women were also of east African origin and presented with FGM-related symptoms despite already having been deinfibulated.

Women usually didn't know what type of FGM they had, but often used the terms ‘sunna’ or ‘pharaonic’ to describe what they thought had happened to them. Two Somali women recalled that the cutter was praised for making the new introitus the ‘size of a grain of rice’. Three Somali women, who had a history of type 3 FGM, said that they had suffered years of forced penetration before accessing deinfibulation. One Somali woman had come to be deinfibulated in secret because her family believed that her new husband must ‘open’ her. Two women from Eritrea had two layers of scar tissue, where both labia majora and minora had been cut and stitched.

With the exception of one woman, all the clients underwent FGM under the age of 18 (Figure 4). Of the seven Eritrean women seen, six were cut as babies. When these women were asked how they knew that they had FGM, they replied that either everyone was cut or that their mother or other family member had told them. The three European-born women were of Somali ethnic origin and all underwent FGM in Somalia whilst on holiday. Two women had no memory of having FGM, but suspected that they had, as they were unable to enjoy sexual pleasure. In both instances, FGM was confirmed upon examination.

A total of 25 women recalled being cut by a traditional lady in their own home, and nine by a healthcare professional. This information was not documented for every woman. Family members, such as mother, father, aunt and/or grandmother were most often cited as arranging the ‘cutting’. Several women blamed themselves, as they recalled pressurising their parents into organising their FGM or running away to join other girls being cut. Many women had experienced extremely traumatic cutting experiences. Women recalled struggling while being held down by groups of women or sometimes men. Some were beaten with sharp objects. One woman remembered her mother screaming, shouting and crying, begging the men to leave her daughter alone.

Figure 5 illustrates the range of symptoms women were experiencing. The majority presented with more than one FGM-related symptom. Many women with type 3 initially said they had not experienced any health problems and when asked whether they had difficulty passing urine or painful intercourse, they replied ‘it is normal’. However they often described their urine as ‘dribbling out slowly’, sometimes taking 10 minutes to empty the bladder and ‘having to go backwards and forwards to the toilet’. They also described blood clots getting stuck behind the scar tissue when menstruating and needing to make repeated trips to the GP for antibiotics to treat urinary tract infections.

Free text notes recorded some of the phrases used by women to describe their symptoms, including: ‘severe pain and bleeding during sex’; ‘rashes and swelling of genitals’; ‘very dry and itchy and burning sensation after intercourse’; ‘sore, stuck, itchy labia’; ‘can't relax, tense, no lubrication, can't feel anything’; ‘unable to have sexual penetration’; ‘incontinence.’; ‘never experienced pleasure’; ‘don't feel whole’.

Clinic interventions and ongoing management

Table 4 describes the interventions that women received. The majority of women with Type 3 (26/31, 65%) chose to be deinfibulated on the same day at their first appointment. Five women returned two weeks later for the procedure. Four women who were booked to return for deinfibulation did not attend, despite being contacted several times. Of the nine women who opted for deinfibulation under general anaesthetic, two were touch phobic and two were needle phobic. Women of all different ages wanted deinfibulation (Table 3). Almost one third (11/40=27.5%) were about to get married or had recently got married. A small number of younger women chose to be opened outside of marriage but we also saw a group of older women who had experienced symptoms for many years. Women sometimes expressed Figure 4. The age at which women attending the clinic had experienced some urgency for same-day deinfibulation, often seeking us out only one or two weeks before their wedding, prior to travelling, or the day before Eid.

Several women requested clitoral and/or labial reconstruction and were disappointed to discover that this is not available in the UK. Overall, 12 women were referred to uro-gynaecology because they presented with symptoms as described above, or because they had type 3 FGM, with fused scar tissue anterior to the urinary meatus. These women could not be fully deinfibulated and often returned with dyspareunia post deinfibulation, because the size of the introitus was still considerably reduced. These women were referred for urogynaecological review, offered counselling and provided digital exercises and dilators to stretch the introitus.

As an exception, one pregnant woman attended the clinic. She was a late booker identified with type 3 at 39 weeks gestation. She was desperate to be deinfibulated prior to going into labour because a relative with type 3 FGM had a caesarean section during childbirth, which she believed was a result of the FGM. She was seen in the gynaecology service as an appointment for same day deinfibulation was available. Two other women, who had previously planned intrapartum deinfibulation but ended up with a caesarean section, chose to come for deinfibulation before getting pregnant again. The correlation between women with type 3 FGM choosing intrapartum deinfibulation yet ending up with an emergency caesarean is a phenomenon that is often discussed anecdotally, but has never been formally acknowledged as a reported reason for caesarean section (Albert et al, 2015).

Safeguarding interventions

A total of 21 women wanted an FGM diagnosis and clinical report to provide evidence for their asylum application. One asylum seeker told us that her first child had bled to death as a result of FGM in her country of origin. Other forms of gender-based violence were also disclosed. One woman, who requested an asylum seeker report, said that because she was an unmarried mother, her family would kill her and her daughter if she returned to her country of origin. Another woman told us that if she returned home she would be forced to marry a man of the family's choice and would be cut again as a precursor to marriage. Two women disclosed that they had been raped.

The majority of West African women described suffering other forms of abuse as well as FGM, such as being beaten, burnt, made to drink ‘potions’, forced into early marriage, subjected to domestic violence and/or exposed to ‘juju/witchcraft’. More than half 56% (n=9) attended at least one follow up counselling session. Two women from Sierra Leone said that if they spoke of what had happened to them they would die. One woman only realised that she would not die when she attended a lesson at school about FGM after having moved to the UK. All 18 women from west Africa said that their family/community are still cutting girls, and many described threatening letters, emails and phone calls from family members, putting pressure on them to return home to cut their daughters. Some even said that loved ones ‘back home’ were ‘in danger’ for speaking to them. In contrast, it was noticeable that the majority of Somali and Eritrean women said that their families are no longer cutting girls; that this was ‘old culture/tradition’ that no one believes in anymore and that FGM is only carried out in rural areas by people who are less educated.

One social care referral resulted in the MR duty (Gov.uk, 2015a). The woman disclosed that her younger sister, age 16, had also been cut. She gave a clear history that both girls had been living with their grandmother at the time and had only recently come to the UK to join their mother. In this case, the younger sister was not seen. The clinic is only for women over 18 years old. The sister did not disclose to the clinic directly that she had FGM, and the health professionals at the clinic did not see it for themselves, therefore, the MR Duty does not apply. However, a social care referral was carried out. In this case, it is Children's Social Care's responsibility to perform the MR Duty upon meeting the child, and to carry out a sensitive investigation jointly with police to verify that this is a historic case, to ensure that no younger siblings are at risk, and to check whether the girl requires a physical or psychological expert review.

A further two children's social care referrals were made for vulnerable mothers who were suffering domestic violence and who we believed were unable to protect their daughters from FGM. Both resulted in FGM Protection Orders. One of the women had a history of mental health problems and repeatedly said that her mother was pressurising her to bring her baby daughter to their country of origin to be cut. She attended our service for counselling and we provided evidence in court for the FGM Protection Order (Gov.uk, 2016).

Psychological support

A total of 35 women (40%) were identified during their initial consultation as having some psychological symptoms, such as flashbacks, nightmares, depression or anxiety. All were offered follow up 1-1 appointments with the counsellor, but women who had travelled a long way were referred to local counselling services. Nearly half (16/35) took up one or more 1-1 counselling sessions. Overall, the counsellor provided 56 sessions over the 12 month period. The counsellor and health advocate also provided support during the majority of deinfibulations. No women declined their support and all reported that they were very satisfied with the care they received. Three women had nine or more counselling sessions, and were reluctant to be referred to other services once they had built up a rapport with the clinic's counsellor. Although six initial 1-1 sessions are offered, the model of care used at the clinic allows flexibility with the number of sessions offered.

The touch-phobic women received counselling before and after deinfibulation to help them prepare for intimacy with their partners. One woman was cut as a baby. Although she could not remember the event, her body appeared to have memory of the trauma and she was unable to tolerate touch in the genital area. Both of the needle-phobic women remembered receiving injections when they were cut. This was unusual, as the majority of women said that no pain relief was used when they underwent FGM.

Influence of recent UK legislation and policy

These findings demonstrate the relevance of the ‘Failure to Protect’ clause in the Serious Crime Act, 2015 (Gov.uk, 2015b). Many women described an aunt or grandmother arranging for them to be cut against their parents' wishes. Two clients were seen who were born in the UK prior to being taken abroad to be cut. In both cases, FGM was carried out more than 14 years ago. In these instances, the women were advised that their parents could be prosecuted under UK law, under the FGM Act 2003 (The National Archives, 2003), and that they would be supported if they wanted to make a police report. Neither of the women wanted to inform against their own families and there were no younger siblings identified who might be at risk of FGM, therefore no social care referral was made. Such cases do not require reporting under the MR duty and, similar to cases of historic child sexual abuse, it is up to the adult woman to decide whether she wishes to give evidence to the police.

Professionals have raised concerns that the MR duty, along with fear of social services and police responses, may have introduced further barriers to women accessing care (Karlsen et al, 2019). The high self-referral rate at the Sunflower Clinic suggests that women are not necessarily deterred from accessing FGM services by this legislation. This may be because the clinic is well established, time is spent communicating with and reassuring women prior to their appointment and the health advocate role is pivotal to promoting community engagement.

The authors recommend FGM Protection Orders (FGMPOs) to women seeking asylum if they believe their daughters are at high risk of FGM, to substantiate their asylum claim (Gov.uk, 2016). On 16 June 2020, in a landmark case, the Home Office failed in their appeal to overturn a Family Court's deportation ruling (England and Wales Court of Appeal, 2020). If, in the future, FGMPOs are regularly overturned, this may render medical reports confirming FGM obsolete, and draws into question how to safeguard girls at risk of FGM from extended family members in the future.

Diagnosis and classification challenges

There are a number of clinical implications arising from this review. Women with fused anterior scar tissue could only be partially deinfibulated. This group of women are still at risk of experiencing problems such as dyspareunia, perineal tearing and haemorrhage during childbirth. This phenomenon is rarely described in FGM literature (Abdulcadir et al, 2011; Abdulcadir et al, 2018) and their management is unclear.

In general, women with type 1 and 2 FGM often expressed as much, if not greater, psychological distress than women with type 3. It would be useful to find out why this is the case. Perhaps they had more traumatic or brutal experiences of being cut? Or were more likely to have suffered other violence as well as FGM? Or is it because they are not offered surgery to treat/relieve their symptoms and therefore feel that there is no hope? They also may have greater social/cultural concerns, as if the practice still continues ‘back home’, their female children are at risk and they may be estranged from their extended families.

Two women with a double layer of scar tissue were identified. This can be classified under the broad classification of type 3 FGM, but the WHO subdivisions 3a and 3b (Table 1) do not appear to describe this phenomenon exactly, where 3a is stitching of the labia minor and 3b is stitching of the labia major. Some authors have suggested that 3b describes when the labia minor ‘and/or’ labia major have been cut (Abdulcadir et al, 2018). This requires clarification and it may be more appropriate to introduce a further subdivision, type 3c, to describe instances where both labia minor and major are stitched.

The WHO definition states that FGM is partial or total removal of the clitoris. ‘Total removal of the clitoris’ appears to be factually incorrect, with reference to the true anatomy of the clitoris (O'Connell et al, 2005) as the body and crus of the clitoris and vestibular bulbs are situated below the external skin surface and are very unlikely to have been removed during FGM. Often women have said that they don't feel ‘whole’ because they believe that their clitoris has been removed. It might be beneficial if the classification were changed to state partial or total removal of the ‘clitoral glans’ so that clinicians can reassure women that their whole clitoris has not been removed. It is possible this would reduce their psychological distress and/or lead to less sexual and marital dysfunction.

The request made by several women for access to clitoral and labial reconstruction suggests that the UK needs to consider how women requesting this can be supported, particularly as these services exist in several other European countries. Women from east Africa were less likely than other women to ask about labial and/or clitoral reconstruction, perhaps because it is taboo to discuss this or because their expectations of sexual pleasure are different. It would be interesting to investigate this further. From December 2018, the estimated size of introitus was documented (whether more or less than 1 cm), as was whether the clitoral glans was absent, partially cut or intact, so that a more accurate clinical description is recorded. Upon the authors' recommendation, this has been included in the case tracker to evaluate the new national FGM support clinics.

Cultural trends

The fact that the majority of women had never discussed FGM with anyone before suggests that issues of shame and silence may remain amongst FGM practising community members, but also that professionals are reluctant to broach the subject. Several studies with healthcare professionals have reported this and identified additional education and training needs (Evans et al, 2019).

It appears that some traditional views still prevail amongst FGM practicing communities, as several women said they were attending the clinic in secret and did not want letters sent home. Some women with type 3 FGM described years of painful sex before seeking deinfibulation and talked of men being required to ‘open’ women to prove their virility. However, there is evidence that cultural change is occurring. For instance, the number of unmarried women attending the clinic for deinfibulation suggests that it may be becoming more acceptable for the procedure to be carried out before/outside of marriage. Similarly, although a certificate to explain that deinfibulation was needed for medical reasons is offered, women rarely took up this offer, as they said there was no need for this.

Safeguarding

Clinic attendees had experienced considerable symptoms caused by FGM and all but one (which led to an FGMPO) said they had no intention of carrying out FGM on their daughters. On the whole there were very few safeguarding concerns. Occasionally, women said that they would not do the pharaonic type of FGM (type 3), which implied that they might believe that ‘just a bleed’ or ‘a small cut’ is okay. In fact, as recently as 2010 The American Academy of Paediatrics (American Association of Pediatrics, 2010) temporarily suggested that a ceremonial prick might be an acceptable form of FGM. For this reason, as part of the safeguarding assessment and FGM prevention work, it is explained to the women in detail that type 1 FGM can also have severe health consequences. For example, it could result in accidentally cutting the urinary meatus leading to lifelong urinary and/or neurological problems, the child bleeding to death or contracting HIV, tetanus or hepatitis from the use of non-sterilized equipment, or severe psychological trauma.

All the women who originated from west Africa said that FGM is still being practised by members of their community and that other forms of abuse often accompany FGM. Their daughters are at high risk of being cut if they are returned to their country of origin. In contrast, the majority of women from east Africa said that their communities no longer practice FGM (although they may have been referring to their own educated relatives or members of the diaspora communities). Further research should be carried out to establish whether other clinics have had similar findings.