Improve reporting of female genital mutilation, MPs tell doctorsBMJ 2015; 350 doi: https://doi.org/10.1136/bmj.h1467 (Published 18 March 2015) Cite this as: BMJ 2015;350:h1467
All rapid responses
While FGM is a heinous crime, the ethical reason why compulsory reporting cannot work and the reason for the principle of medical confidentiality is that if patients know that seeking medical help will result in police action, they will not attend. As a profession we cannot deny these unfortunate women treatment so they must be assured privacy. For many years all RAF medical officers had to sign a document that they would report homosexuals to the security services. There were of course many homosexuals serving loyally but to my knowledge none were ever reported. Doctors will simply ignore this requirement to report. Ultimately the CPS might have to consider that if a doctor is prosecuted, whether a jury is likely to convict.
Competing interests: No competing interests
Members of the FGM Specialist Interest Group for community health professionals in Oxfordshire have been working hard to embrace the work involved in the prevention of FGM, protection of girls from FGM and provision of support for women who have experienced FGM. Significant progress has been made in Oxfordshire. While women have received care and girls are safeguarded, we have done so by maintaining their confidentiality and following the Caldicott Principles.
Prevalence data is useful and we support data collection to provide evidence of need to commission services.
The dataset approach to data collection, however, breaks confidentiality, threatens the therapeutic relationship and puts at risk patient/client engagement with our services.
Many of the women affected by FGM do not speak English well enough nor have the understanding of the government legislation to opt out or speak out about this.
We feel this is counterproductive and jeopardises the good work done across the country. We agree with the authors of the above article. We recommend a review to consider an alternative method of how this data can be collected.
Competing interests: No competing interests
We would like to state our agreement with the issues raised in the letter from Professor Bewley and colleagues.
We share grave concerns about the proposed FGM enhanced data-set. The submission of patient identifiable personal information to a third party without consent breaches patient doctor confidentiality. We believe that trust is central and vital to the doctor patient relationship, and that the requirement to disclose personal data about our patients potentially against their wishes could damage this irrevocably. Furthermore, we believe that the requirement to do so may deter GPs from asking women about FGM, or prevent women from being willing to disclose their FGM, in order to avoid being in such a situation. Thus opportunities for protecting and supporting women and safeguarding them and their families may be lost. The responsibility for communicating with women about where their data will be sent and what may happen to their data is devolved to clinicians.
The documents we have been sent by the department of health in preparation for this data-set inform us that consent is not required for this data submission, but that fair processing is. The Department of Health guidance refers us to their leaflet “more information about FGM 2015” and tells us that “Giving the patient this leaflet fully meets the requirement for ‘fair processing’ and this action alone is sufficient. There is no requirement to discuss the FGM data-set in detail, or to ask a patient for explicit consent to collect their information, although clinicians will need to answer any questions that a patient has and know to whom they might need to refer the patient for additional information.” (https://www.gov.uk/government/uploads/system/uploads/attachment_data/fil...)
We do not think that this patient information leaflet gives enough information to clinicians or women about the amount of personally identifiable data that will be collected about them, nor does it give clear or adequate information about the options a woman has if she wishes to opt out of the data-set collection process. We do not believe it is clear whether a woman can opt out of data extraction from her GP practice or only to the onward use of her data, though it is clearly vital that we understand this in order to be able to adequately counsel women. Having tried to follow the guidance and follow the suggested web-links, we note that any further information to support this process are in English only, and are very confusing, which will impact on many women’s ability to exercise their right to object.
Therefore, we do not believe that just giving women this leaflet will fulfill our fair processing responsibilities, or that we are enabled to support this process.
In summary, we remain deeply concerned regarding the proposals to extract confidential data from patients records under these circumstances without any evidence of benefit and with what we believe are real and enduring risks to patient doctor relationships, and we ask that the department of health urgently re-consider this matter before implementation.
Competing interests: No competing interests
Today I attended a multidisciplinary workshop to discuss how we implement the new statutory guidance locally. There was much confusion about the purpose of the Enhanced Dataset; many felt it was aimed at assisting the government to achieve a prosecution, rather than reducing young girls' risk. Work to reduce the incidence of FGM must come from within communities, supported by informed supportive and committed professionals in health & education, who can offer confidential proactive advice and help. A robust safeguarding team with comprehensive communication strategies, along with FGM Champions from practising communities, will achieve this far better than a pile of guidelines and rules that will involve a ridiculous amount of work for GPs who have no spare time as it is and are unaware of the reality of what is landing on their desks on October 1.
If we are conscientious we should read: http://www.hscic.gov.uk/media/16204/FGM-Frequently-Asked-Questions-Enhan...
12 pages tell us what we should be doing - item 8 on page 12 alludes to the Kafkaesque procedure for women who do not want their personal information to go to HSCIC. We give them a leaflet on FGM (available in 11 languages) which contains a link to info re how to remove their name - a 6 page document only available in HSCIC English, which, as mentioned by Dr Katrina Darke, is a challenge for us to understand and would also be extremely intimidating to anyone whose main contacts with authority have been negative.
I have attached the FGM information governance statement - barely comprehensible and certainly not something I can do in a consultation.
This whole business also threatens the doctor - patient relationship in the extreme, and thus risks driving FGM underground. Victims require support, regardless of their own views on the practice. The majority do not wish to inflict it on their children and want us to help them, not give their personal information to 'the authorities'. Those who are in favour are not even going to tell us they are pregnant if they think we might go straight to the police.
There is also no commitment to ongoing anonymity for women if their information goes to HSCIC, so the guarantee of lifelong anonymity to victims is disingenuous.
I, like Dr Darke, will not engage with this legislation, and will be recommending through my LMC that GPs do not involve themselves with the Enhanced Dataset demands. The money would have been better spent on funding specialist midwives in antenatal clinics - something Coventry, despite its high number of FGM victims, lacks. As GPs our limited time is better spent educating and informing ourselves about FGM, working closely with midwives, health visitors and our local safeguarding team, to ensure that our patients feel they can trust us with this most personal and controversial of health information, for the sake of their daughters both born and unborn.
Competing interests: GP Member of FGM National Clinical Group. My views are not theirs on this topic.
As a clinician working in a GP practice with many women who have been subjected to FGM, and also as clinical lead of a service dedicated to helping women who have health complications as a result of FGM, Bristol Community Rose Clinic, I have huge concerns about the FGM Enhanced Dataset Collection.
For many women who seek help at the Bristol Community Rose Clinic, it has taken weeks or months to build up the confidence to contact the clinic for help and advise around FGM. I frequently come across women who worry about being seen in the waiting room, for fear that others may guess why they are there. Privacy and confidentiality are huge issues for these women.
The latest documents around the FGM enhanced dataset collection state that this data will not be shared with other agencies. The DOH have, however, failed to confirm that this position will be guaranteed not to change in the future. With the recent headline case involving the mistaken sharing of ‘HIV’ data, our patients will undoubtedly need reassurance over this. It is vital that we are able to inform our patients correctly on this issue. Without this reassurance, we are failing in our duty as guardians of our patient’s medical data.
There is a defined process by which patients can object to having their data shared with HSCIC. As a native english speaker, however, I confess I find the process confusing. The on-line link for objection (a deterrent for some in itself) leads to a generic HSCIC form. ( http://www.hscic.gov.uk/media/14700/Preventing-the-use-of-your-informati... )
In order to remove identifying information about yourself, it is necessary to provide the HSCIC with even more personal information including name, dob, address and documents such as birth certificate/ driving licence/utility statements/benefit books. I doubt this will allay fears for those concerned that their personal data is not in safe hands.
The DOH guidance to doctors states that there is no obligation to obtain consent, however ‘fair processing’ is required i.e. informing patients about the sharing of information. At our GP practice, we have several hundred patients who are already recorded as having had FGM. The abuse is historical, not new, and for women beyond child bearing age may not be relevant to current health concerns. The DOH have failed to answer the question as to whether the data on these women will automatically be collected as part of the dataset, or whether the dataset only includes patients who have been seen each quarter. Despite the silence from DOH, it is in fact vital that we understand the answer to this question. If retrospective data are used, we will need to give appropriate information to the patients concerned, so that they have an opportunity to opt out if they so wish. With the numbers of patients this involves at Lawrence Hill Health Centre alone, this could be extremely complex and time heavy.
I had hoped that the DOH would be able to respond to some of my concerns before the Enhanced dataset collection begins on October 1st. Sadly, my queries remain unanswered due to a wall of silence from the DOH. As a result, the GP practice I work in have decided we will not be sharing these data until and unless we are satisfied that the data is in safe hands and will remain so.
As I understand it, the FGM Enhanced Dataset is primarily being set up to enable commissioning of services. Personally, I do not believe that the collection of individual data is likely to increase the accuracy of estimates of FGM, as the coverage each quarter will not be complete. It is my belief that accurate data about ethnicity would in fact be far more useful, as, in general terms, the behaviour of communities is more predictable than that of individuals, both historically and now.
Competing interests: No competing interests
Susan Bewley draws attention to "much commendable work" by the government in attempting to tackle FGM, while expressing concern about the damage to confidentiality that will follow the introduction of FGM Enhanced Data Collection across the NHS, next month.
Issues of confidentiality and the government's positive noises are not the immediate concerns of many women whose interests are increasingly at risk.
Colleagues who regularly advise and treat female asylum seekers will be aware that among these women there are many for whom the traumas of FGM, in all its aspects, remain an everyday threat.
Many female asylum seekers fear being returned to their own countries because they have fled to the UK when they face marriage, not of their own free will, to a man whose family will insist they be subjected to FGM.
Women who have been victims of FGM themselves in childhood, and are now seeking asylum with their own daughters in the UK, fear that their daughters will be subjected to FGM if they are forced to return.
The decision making processes in these instances are seldom made public. Anecdotal reports are discouraging, and do not reflect the positive intentions of the government.
My own, limited and anecdotal experience in writing reports for female asylum seekers who appear before Tribunals is that the information the Tribunals rely on, from their own Foreign Office sources, citing the risk of FGM in particular countries, is markedly different from the up to date information that specialist colleagues in those countries willingly provide.
One recent, negative written judgement suggested that a single woman and her two at risk daughters could return to a different part of the country concerned. A suggestion that betrays a serious lack of understanding of the cultural and societal dynamics that would make such a decision difficult and dangerous.
How can the Foreign Office and Judiciary become better informed ?
Asylum seekers are widely spread across the UK. Many are out of reach of Medical Justice, the Medical Foundation for Victims of Torture, and other NGOs who might help in a few large cities. They already struggle with their workload.
GPs may, unknowingly, have such potential victims of FGM as patients.
Recent changes in legal aid make it even more difficult for women to access legal assistance.
All the more important for GPs who become aware of their situation, to be prepared to offer supporting evidence for women, and in the process, move Tribunals in the direction of better understanding.
Competing interests: No competing interests
The government has done much commendable work over the past year to tackle Female Genital Mutilation (FGM) including a drive to improve service provision nationally for survivors and develop more robust multiagency strategies to protect children at risk(1,2).
Reporting cases of FGM in girls under 18 to the Police becomes mandatory for all health and social care professionals in England and Wales from October under the Serious Crime Act 2015. Whilst implementation concerns have been raised(3), this mandatory reporting duty is consistent with existing GMC child protection guidance(4).
Notably, mandatory reporting of FGM to the police does not extend to over 18s. The obvious concern that this would conflict with healthcare professionals’ duty of patient confidentiality and would deter women seeking medical help was highlighted during the Home Office-led consultation(5).
Consideration of these same issues is utterly lacking from the planned roll-out of the Department of Health’s (DoH) FGM Enhanced Data Collection across the NHS in October 2015: All healthcare professionals will be legally obliged to submit highly sensitive, patient-identifiable information to the DoH on every woman with FGM attending the NHS for whatever reason. A woeful DoH consultation preceded this ministerial direction which also says patient consent is not required. Whilst stating that no patient-identifiable information will be published, the reassurance given that confidential data will not be released to third parties (e.g. Police/ Crown Prosecution Service) through other legal/statutory means is inadequate and not future-proofed(6). Additionally, the legal responsibility for communicating with women that this information will be collected, where it will be sent and what may happen to the data is devolved to frontline clinicians(7,8). This ill-considered initiative has no evidence of benefit, wastes precious clinical time, and will profoundly damage trust in health professionals who will either collude or ignore the imperative.
Correspondence with the Minister of Public Health and civil servants from concerned clinicians remains unanswered. The DoH seems willfully unaware of the wider ramifications of breaching confidentiality and the impact on the human and healthcare rights of already disadvantaged women and their families. Rather than actually tackling FGM, this measure is likely to hinder eradication strategies. Such disclosures will inhibit women from speaking up about this abuse and other health concerns. In addition, the push to implement Enhanced Data Collection with an electronic infrastructure and opt-out that is not fit for purpose will bring already compromised patient confidence in confidentiality closer to breaking point(9,10).
Confidentiality is not absolute, but it underpins the doctor-patient relationship. The GMC recently emailed all doctors pointing out their obligation to breach confidentiality if the government has made a law compelling them to do so(11). But such law is unnecessary and wrong-headed. The GMC did not remind doctors of their countervailing ethical and professional obligations. The stakes are higher than simply FGM. The government still has time to reflect and pull back from a policy that wrecks the basic medical promise of confidentiality. A profession that wishes to retain trust(12,13) must speak out about the threat to the general public.
References (all websites last accessed 19th June 2015)
1 Safeguarding women and girls at risk of FGM (DoH, 2015)
2 Services for girls and women with FGM (DoH, 2015)
3 Royal College of Paediatrics and Child Health: Consultation response submitted by the Royal College of Paediatrics and Child Health http://www.rcpch.ac.uk/system/files/protected/consultation/RCPCH%20Final...
4 Protecting children and young people: the responsibilities of all doctors (GMC, 2012)
5 Introducing mandatory reporting for female genital mutilation consultation – summary of responses (Home Office Publications, February 2015)
6 Female Genital Mutilation Enhanced Dataset – Information Governance Statement http://www.hscic.gov.uk/fgm
7 Data Protection Act, 1998 https://www.gov.uk/data-protection/the-data-protection-act
8 Female Genital Mutilation (FGM) Enhanced Dataset: Requirements Specification April 2015 (p48) http://www.hscic.gov.uk/media/16781/2026122014spec/pdf/2026122014spec.pdf
9 London clinic leaks HIV status of patients
10. RCGP voices concerns over care.data http://www.rcgp.org.uk/news/2014/february/rcgp-voices-concerns-about-car...
11 GMC News: Email dated September 10th 2015 “New mandatory duty to report cases of FGM”
12 Royal College of Physicians. Future physician: changing doctors in changing times. Report of a working party. London: RCP, 2010.
13 McCartney M. For better primary care, pay GPs for service. BMJ 2015;351:h4839 http://www.bmj.com/content/351/bmj.h4839
Competing interests: Set up or run FGM clinics since 1996 (SB, KD, KE, BK); Publications about FGM (SB, KE, KD, BK, PZ); Defence expert in FGM trial 2014 (SB). Other authors none declared.