One FGM Question for women accessing the NHS

Soon all women accessing NHS care in the UK may be asked whether they’ve been subjected to FGM. This comes at a time when the practice has all but disappeared from media headlines after a decade of disproportionate propagandising and scaremongering in regard to it. And limited evidence of the need for or the value of asking the question. But some campaigners and activists believe it’s necessary irrespective of the woman’s background, race or risk.

Termed the One Question campaign, it was developed by the charity The Vavengers, to demonstrate what they consider an easily implementable solution to FGM data poverty. And to help prevent new cases from occurring. All female patients would be invited to complete a confidential form to answer the question “I have been subjected to FGM.’ In return, the NHS would be expected to offer improved care to affected women including long-term mental health support and reconstruction surgery where necessary. 

But as FGM is a minority cultural practice among specific people, one wonders what asking all women would achieve apart from normalising myths in regard to prevalence and risk. And possibly triggering painful reminders of previous, insensitive FGM campaigns among others.

In preparation, Nursing Times and The Vavengers are conducting a survey of nurses – to find out their current knowledge and practices in relation to FGM.

One Question’s history

The question was reported to have been trialled successfully at Ealing Hospital, London. Four other questions were also asked to help normalise the experience. These included whether the women used a form of contraception, had a mental illness, had high blood pressure or rheumatoid arthritis. We don’t know why those specific questions were chosen or outcomes in regard to them.

But the tick box format chosen ‘ensured assumptions based on background were eliminated and no one was racially profiled’. It also avoided healthcare staff having to engage in ‘confronting conversations or traumatic consultations’. 

Significant data was reported to have been retrieved. “More than half of the survivors we work with reported not being asked this question, and a further 72% reported that they had never received healthcare support because of FGM/C.” Consequently, the question has now been incorporated in Ealing hospital’s safeguarding programme and the One Question continues to be asked.

The campaign has received high profile endorsements including from The House of Lords’ Baroness Boycott, Patron of The Vavengers. At a Lord’s event, The Vavengers team launched their report, UK healthcare inequalities outlining their perceived need for change. They also presented it to England’s chief nursing officer Dame Ruth May. Possibly generalising from Ealing’s findings, the report suggests that more than half of the survivors the charity works with had not been asked about FGM by health professionals. 

That the survey is now being promoted to Nursing Times readers may help Vavenger’s develop grassroot evidence of NHS staff support for it to be adopted in encounters with all women. 

FGM confusion

We are not told how FGM was/is defined in the Ealing or the current nurses’ survey, so presumably respondents decide this for themselves? And considering how ill-informed and confused many are in regard to the practice following the decade-long hype, how accurate will results be?

How many, possibly fearing repercussions, will honestly report a positive status unless it’s problematic for them, fearing the consequences? Self-declaring may induce fears of being reported to social care. Will under 18’s with FGM be told that staff are obliged to report them to the police?

And will the women and nurses surveyed know, accept or even care that genital cosmetic surgeries like genital piercings are classified Type IV FGM by the WHO? That all NHS Trusts and GP Practices are expected to reflect this classification when recording cases on the FGM Dataset? And will all Type IV’s, some merely symbolic, be given the same weight as e.g Type III, infibulation?

We already know that based on key information about FGM cases collected by the NHS over the past eight years, 90.9 per cent of the 545 women and girls who had undergone FGM in England had genital piercings as an adult. Yes, this is what is actually being officially reported to the public as FGM. But I doubt this is what they  believe FGM to be.

Presumably all of this will be clarified should the NHS agree to adopt the question? If not, and piercings are not reported, the data will still be inaccurate. Or maybe, on a more positive note, it’s potential collection will afford the NHS an opportunity to reconsider the value of adhering to the outdated and inaccurate WHO FGM classifications? 

Data reliability

The survey preamble says an estimated 137,000 survivors of FGM are living in England and Wales and 60K girls at risk of it. These figures were probably taken from a 2015 City University report.

But the report’s co-author Dr Macfarlane subsequently said they were unable to assess the actual numbers ‘at risk’ of it, saying “(i)t is important ……not to assume that their daughters are all at risk, as many families have given up FGM on migration and attitudes have changed in some of their countries of origin. On the other hand, others may have not given up FGM and it is important to safeguard their daughters.”

In 2019, Macfarlane reiterated the scale of the practice had been over-estimated and advised that a generic ‘at risk’ category should not be used in regard to FGM saying “Risks to girls have to be assessed through contacts with individual mothers and families.”

In 2019, University of Bristol research also assessed that despite serious inadequacies in the data available, there was sufficient evidence to indicate that the risk among those living in the UK was far lower than often suggested, with ‘the numbers of girls affected likely to be in the tens rather than the tens of thousands.’

Despite almost a decade of state sanctioned propagandising and eight years of inadequate data collection, the NHS still lacks data on the actual scale of FGM in the UK, or even in England. We know however that between April 2015 and March 2023, it was relevant to the NHS attendance of 33,590 women and girls in England. Data for other UK countries, if available, is not collated centrally and remains difficult to access.

Coincidentally, the NHS in England is finally considering a review of its data collection. It has hopefully taken note of the many justifiable criticisms made over the years about FGM data and how unethical the collection system is. It even intends launching a deferred consultation to help improve data quality and completeness.

In context

In 2015, soon after England’s trial of a Medical Doctor for allegedly carrying out FGM, the Royal College of Obstetrics and Gynaecology (RCOG) updated its guideline FGM and its Management. Possibly sensitive to accusations of racism, it advised members that all women, irrespective of their country of origin, should in future be asked about a history of FGM at their first antenatal visit, and the answer documented in their maternity record. This does not appear to have been deemed controversial then or subsequently.

This advice followed an earlier initiative by midwives from Barking, Havering and Redbridge University Hospitals NHS Trust. Soon after the doctor had been accused of the crime, they adopted the practice of asking all women at their first ante natal appointment whether they had undergone FGM. Even if the women initially answered no, they were asked again at a later stage of their pregnancy.

In 2019, an FGM specialist midwife confirmed that all pregnant women were being asked at antenatal bookings whether they have suffered any form of genital violence. Those who disclosed FGM were then referred to an appropriate service.

So, since 2012, despite FGM being a minority and declining cultural practice, all pregnant women seen in the NHS by Doctors and Midwives may have have been screened in regard to it. This initiative does not appear to have been evaluated. Yet, if One Question is adopted, it may be extended to all women, not just obstetric and gynaecological patients.

Damage caused by FGM safeguarding

Worryingly, research from Bristol in 2019 demonstarted that specific people who may need care have experienced FGM-safeguarding as stigmatising, exploitative and unjustified, and as an assault on belonging and citizenship. This should be of real concern to the authorities and to campaigners and an indictment of how problematic their anti-FGM approach has been. This is quite a legacy and a challenging problem that needs addressing. 

But the challenge will not begin to be addressed with the focus merely on a lack of data. And the campaigners have pre-decided that better mental health support and reconstructive surgery is what women who’ve undergone FGM may need. Their data collection approach is justified as not being based on assumptions of heritage or racial profiling. But race inequality was patently a factor in safeguarding interventions and poor provision of care in Bristol in 2019 and needs acknowledging.

Evidence of care poverty in Bristol

Since then, more evidence has been accrued in Bristol depicting the particular unmet care needs of people affected by FGM. Many relate to sexual functioning and its impact on spousal/partner relationships and families more broadly. The problem is not just data poverty but what’s been termed ‘care poverty’.

Care poverty ‘is due to the combined effects of a lack of awareness of services, barriers to accessing existing services including due to previous negative healthcare experiences in GP and hospital settings and a lack of provision of certain kinds of service to address the psycho-physiological needs arising from FGC/M.’ It’s unlikely that these are unique to Bristol.

This is despite that the UK was considered a world leader in tackling FGM after Prime Minister May announced a broad package of reforms during a Girl Summit in London in 2014. Part of an £1.4m FGM prevention programme helped establish a National FGM Centre. And charities received funding to create community “champions” with the “cultural knowledge and the connections necessary to challenge beliefs and behaviours”. An ‘FGM industry’ developed with awareness-raising initiatives like Let’s Protect our Girls.

Accurate Government spending in regard to FGM is hard to identify but £2,718,000 was allocated for work at home and abroad between April 2015-2016. Total domestic government spend on tackling FGM in the UK was reported in July 2020 as £1.8m up to April 2019, before falling. This fall was interpreted as putting girls ‘at risk’ because financial support to help end FGM in Britain was assessed to have been reduced by 84 per cent. 

The recent report “Care Poverty: the unmet needs of those living with FGC/M in Bristol”, previous research by the University of Bristol and FORWARD UK demonstrate that people who were targeted during the anti-FGM campaigns gained little but suffered a lot because of them. Some were left feeling more conscious of having undergone it (irrespective of how severe or problematic it was) and stigmatised without recourse to adequate care. Similar was reported by women in Cardiff who were perplexed by the FGM discourse which had come to dominate their lives so negatively.

What a terrible indictment of the the UK’s FGM Prevention Programme. And a continuing challenge for those wanting to address the problems it has caused. Sadly, the One Question campaign will not begin to go there.  Confronting conversations may have resulted from insensitive, over-the-top FGM propaganda and result driven campaigns and an apology should be offered to those at the receiving end in recognition of the damage they caused. Women still needing care may then come forward, voluntarily

Update

Six hundred and ninety (690) people responded to the survey and findings were published in the Nursing Times 12 09.2023.

The headline reported Nurses lacking training and confidence in FGM care. Yet the survey demonstrated that 73 per cent reported they would feel comfortable asking a patient about FGM if they had suspicions that they were a survivor.

The full survey findings can be accessed here.

My analysis of the survey findings can be accessed here.