The British NHS (National Health Service): “FGM is not the end. There is hope.”

Hoda Ali and friend attend

Hoda Ali and friend attend “FGM is not the end. There is hope” Ealing NHS Symposium.

“No, I’d rather you didn’t take my picture,” the speaker explained. At a Speak-out in St. Germain-en-Laye where Dr. Pierre Foldes gathers his satisfied patients to talk about their experience with others exploring restoration surgery, I had requested the photo to illustrate my report. “I know I’ll be exposed,” she went on, “but hope to mute my family’s embarrassment.” This dilemma confronts  many in the courageous ‘girl generation’ now taking personal risks to uncover FGM, aiming to save others from the blade and to stop the tradition for good.

On 21 October 2015 in Ealing Town Hall, I was privileged to attend another memorable symposium around developments concerning FGM. The  London event had  been organized by Nolan Victory, Equalities, Diversity & Human Rights Manager, London North West Healthcare NHS Trust together with a team of volunteers including FGM Specialist midwife Edon Aissa and her associates Deqa Dirie (Health advocate at Imperial College Hospital/ FGM African Well Women Clinic and London North West Hospital) and Bishara Hassan. (Delegate’s take-away carry-bags were sponsored by the Vavengers community association with support from the FGM Hope Clinic.)

The gathering coincided with the start of mandatory reporting of FGM whenever found by registered professionals, i.e. physicians, educators, social workers and police.

The directive, focused on patients under 18, enters into force on 31 October. The podium informed its audience, more than sixty strong, what this meant.

Nolan Victory opens the Symposium

Nolan Victory opens the Symposium

It also did much more. Given diverse attendees – many  from practicing communities, others represented NGOs engaged in fighting FGM or appeared out of empathy and interest – presentations ranged from straightforward (and broadly available) facts about the practice to ethical and practical dilemmas posed by the new mandate that would directly affect many participants’ work and lives.

Along with Dr. Isaac John, Chair of the Health & Social Care Black and Minority Ethnic Network, I was honoured to welcome participants by introducing the ‘hope’ announced in the symposium title. I had been asked to talk about Dr. Foldes’ success with 80% of roughly 5000 patients.  The physician who invented the procedure, he repairs old wounds but, more important, renews the confidence and sense of wholeness snatched when the blade struck. Hubert Prolongeau’s Undoing FGM: Pierre Foldes, the Surgeon Who Restores the Clitoris contains heartening testimony from survivors enthusiastically grateful for the new lease on life their regained birth anatomy brings them. The British NHS does not cover the costs of the operation, but a Clitoris Restoration Fund is in formation to enable UK residents to benefit from Foldes’ expertise.

I have attended several ‘speak-outs’ at the Institut en santé génésique in Paris where gratitude often manifests as a feeling of privilege to educate for prevention and enable others to work toward sparing little girls. Like Valentine Nkoyo (in Maria Kiminta and Tobe Levin. Kiminta. A Maasai’s Fight against FGM. UnCUT/VOICES 2015) who spoke to her father about the pain and complications of which he had been unaware, Foldes’ patients have also convinced their  households to stop excising. They are proud to be the last ones cut.

This is wonderful news. The sad part is, the pace is unacceptable. To accelerate men’s knowledge and commitment as well as to inform healthcare professionals, girls at risk and women suffering the consequences, a series of programmes “aimed at highlighting and educating the [public] on the dangers of the practice” preceded the symposium, as Nolan Victory reminded me in his invitation letter. “The London Boroughs of Ealing, Brent and Harrow have some of the largest communities … affected by … FGM.”

Should anyone doubt the urgency, clinical specialist nurse,  head of the African Well Woman’s Service for Waltham Forest, London, and my decades-long colleague in the EuroNet-FGM, Jennifer Bourne gave details from case studies illustrating long-term harm. One patient, for instance, presented in Jennifer’s practice with recurring panic attacks: suddenly overwhelmed by a sense of asphyxiation, her distress was traced to a flashback of the huge adult who descended upon her, crushing the six-year-old’s chest as her clitoris was cut. Similarly, de-infibulation, a service offered to sewn women by Well Woman Clinics in the UK, either under local anaesthesia or referral to a hospital, is not without its shadow side. “The term ‘reversal’ for opening the scar is incommensurate with the initial abuse,” Jennifer said, “since things will never be the same.”

De-infibulation was, however, the mandate of speaker Juliet Albert’s Acton African Well Woman Centre, the first midwifery-led community based institution outside a hospital setting to offer the service.  Juliet regretted that too many of her colleagues had received insufficient – and in many instances, no – training that would have prepared them for the crisis situations in which professionals often first become aware of FGM.  My friend Comfort I. Ottah, midwife and former managing director of FORWARD, once told a story like theirs. Without prior knowledge of FGM, she found herself facing an infant’s crowning skull impounded against a solid wall of sewn flesh – a life-threatening event – without a clue as to the cause or response. “Cut it! Cut it!” the panicked parturient shrieked, and when Comfort obeyed, the infant was hurled from the womb with such force that the midwife, who caught it, was propelled across the room.

To prevent scenes like the foregoing, reported as occurring with some regularity at Birmingham hospitals when untrained staff encounter excised birthing women, and in response to urging by campaigning groups of FGM survivors, the Department of Health is sponsoring FGM Prevention Programmes. To better assess community needs, however, data is required. To this end, an obligation to contribute to an “FGM Enhanced Dataset,” Juliet Albert informed us, will begin.  According to The Guardian, “Under the new law, health and social-care professionals and teachers in England and Wales will be obliged to report all cases of known FGM in under-18s, whether it is disclosed by the victim or seen by the professional.  Failure to report cases within a month, unless there are ‘exceptional’ safeguarding issues, could result in the professionals facing internal disciplinary action or referral to regulators, which could bar them from practice.” (1)

Though there appears to be little dissent regarding the capture of children’s data, the obligation to report adults’ cases is less clear, although, as Juliet reminds us, for adults “mandatory recording of data” is not the same as “mandatory reporting to police” even if it is, under the “Serious Crime Act” of 2015, for girls. And from the gynaecologist’s perspective, a questionnaire specifically asking about FGM will obviate some abuses in the doctor/patient interview. For instance, a general practitioner failed to ask anything about a woman’s infibulation scar although she suffered from recurrent urinary tract infections – evidence of the medical profession ignoring the issue, likely for being ignorant of it.Jennifer Bourne and Tobe Ealing Town Hall

Left, EuroNet-FGM colleagues’ reunion: Jennifer Bourne and Tobe Levin

Thus, given the mandate to report, education of health professionals will improve. For instance, girls having undergone FGM will be entered in a Risk Indicator System (RIS), an electronic health record, whose notation, however, will be removed when the child turns 18. Health Education England has also made available e-learning modules. (2) And the NHS Choices FGM webpage for professionals is worth consulting [http://www.nhs.uk/NHSEngland/AboutNHSservices/sexual-health-services/Pages/fgm-for-professionals.aspx]. The site is rich in guidance for the consultation that is ethical, frank, and courteous – despite the continuing taboo nature of the topic.

This sub rosa feature suggests an additional benefit of mandatory reporting, taking the onus of introducing the topic off of clinicians and passing it on to the government — where it belongs. The symposium revealed, for instance, the extent of secrecy surrounding FGM. Two sisters presented in the clinic, one having undergone clitoridectomy (type 1), the other infibulation (type 3). Even in their sibling intimacy, each remained ignorant of the other’s wound, assuming instead their vulvas were the same.

Difficult to believe, but one mother of eight really did present with an introitus very much the size of the infibulated sister. Because she had laboured outside the country (presumably in Somalia) where re-infibulation is routine, it was strongly recommended to give birth in the UK where this surplus stitching-up would be far less likely. (3)

Hence, to the public and practicing communities must be added the medical profession’s instructional needs. The mandatory reporting questionnaire helps here. Specific questions allow risk assessment. Have you been cut?  Have family members? Do you know about plans to cut others? Naturally children are reluctant to indict their parents because “99% of them,” Joy Clarke tells us, “come from loving families.”

Joy, an FGM specialist midwife who runs the FGM clinic at Whittingdon Hospital notes that all women she examines are asked about FGM, regardless of skin colour or national origin. “Two Portuguese sisters presented with infibulation.” Their mother had been Portuguese, father Somali.

Clearly, the father had it done, but increasing numbers of fathers refuse, as more men – like Pierre Foldes – come on board. In Q and A, one male member of the audience advised, “You should include more men.” “Where have you been?” the podium responded. “I’m here now,” he replied — and hopefully to stay.

Finally, targeting this ephemeral aspect of the fight to end FGM, a Somali filmmaker noted how the movement seemed to proceed “only from project to project, funder to funder, and when the funding ends, so does the project.” Aissa responded: “For me, it’s not a project. It’s my life.” … Just as the symposium foresaw: “FGM is not the end. There is hope.”

Fear, Force, Betrayal and Anguish, Diaspora Hands from Sierra Leone defy group censure to show it as it is ...

Fear, Force, Betrayal and Anguish, Diaspora Hands from Sierra Leone defy group censure to show it as it is …

In gratitude to Nolan and Cheryl-Ann Victory for inviting me to participate in an effective and inspiring event.

1 Karen McVeigh. “FGM. Reporting of Cases among Children becomes Mandatory.” http://www.theguardian.com/society/2015/oct/20/female-genital-mutilation-reporting-cases-children-mandatory Retrieved 25 October 2015.

2 FGM open access presentation now available via the e-lfh.org.uk/FGM programme page. Alternatively please visit http://www.e-lfh.org.uk/programmes/female-genital-mutilation/presentation/ For further information on the programme and how to access the e-learning please visit  http://www.e-lfh.org.uk/programmes/female-genital-mutilation/

3 It is therefore ironic that the first physician formally accused of performing FGM would be an “NHS doctor in a London maternity unit” (Sandra LaVille in The Guardian). Yet, confirming an egregious lack of preparation as the Ealing Symposium pointed out, “until that moment [Dr. Dhanuson] Dharmasena had never seen a woman who had undergone FGM, had never been given training on the subject in his undergraduate or postgraduate studies and had no experience of how to carry out a deinfibulation procedure to help women who have undergone FGM give birth safely. He was handed the mother’s notes, in which midwives had stated she was presenting with type 1 or 2 FGM. Hospital policy dictates that the mother should have been picked up by antenatal teams much earlier in her care, in order to be seen by a specialist team, and referred for a deinfibulation procedure in the months before her due date. But midwives had failed to pick up her condition and instead the doctor had to intervene surgically within minutes, with the birth progressing fast and the baby showing signs of distress.” The single, long figure-eight stitch he then inserted to stop the bleeding also united the labia, an act which, according to Comfort Momoh OBE, is legally FGM although she stresses the need for increased training of medical personnel. See Sandra LaVille, “First FGM Prosecution. How the Case Came to Court.” The Guardian. 4 February 2015. http://www.theguardian.com/society/2015/feb/04/first-female-genital-mutilation-prosecution-dhanuson-dharmasena-fgm accessed 25 October 2015.

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