FGM NHS data is neither accurate nor reliable

It will take the NHS 25 years, at this rate, to report all women and girls with FGM to the Department of Health.

The third FGM report, collected for the Department of Health and NHS England by the Health & Social Care Information Centre (HSCIC), was published on 8 March 2016. Despite that reporting is mandatory, few centres are complying.  The author suggests ‘caution is advised throughout any interpretation of these findings because data completeness is often low and varies by commissioning region and submitter.’

The period covered the three months between October and December 2015, for England, and was the third of the new, quarterly reports published since new NHS data collection began in April 2015. But because reporting centres are few, the data produced is, by HSCIC’s own admission, neither accurate nor reliable. And because there is no prevalence data specific to England (or the UK), it is difficult to benchmark or measure progress.

The enhanced dataset – a repository for individual level data collected by healthcare providers in England, has been used since April 2015 in an attempt to avoid the duplication that occurred when prevalence data was collected from September 2014 to March 2015.

Confusion about the differences between the two datasets persists however and has resulted in incorrect and sometimes sensational headlines such as ‘case of FGM reported in the UK every 96 minutes’. And if current reporting progress is anything to go by, there is still little clarity regarding the prevalence and extent of FGM in women and girls, in England.

Who collects data

Clinicians working across healthcare settings are expected to collect and centralise specific FGM related data since a Directive, signed by Jane Ellison, Parliamentary Under-Secretary of State for Public Health, was enforced in April 2015. Although any organisation (except Genito Urinary Medicine, HIV and Sexual Health Services) could have submitted data from April 2015, Acute Trusts have been expected to since July 2015. Mental Health Trusts and GP Practices should have  reported from October 2015, making this report the first one in which their data could be included.

What is collected

The FGM Enhanced Dataset Information Standard requires all clinicians across all NHS healthcare settings to record in the clinical notes, when a patient with FGM is identified. This should be done as part of the clinical examination during routine provision of care. The dataset includes patient demographics (including, controversially, their names), specific FGM information including type, referral and treatment information.

How many patients were seen

Between October and December, 1316 women and girls were seen. This figure is similar to the numbers seen in the previous quarters (April-June and July-Sept 2015): 1036 and 1385 respectively. This brings the total seen in the nine months from April to December 2015 to 3737.

The NHS estimates that 137,000 women are affected by FGM across the whole of the UK. This leaves 133,000 unaccounted for. If we look ahead and estimate that 1350 will be seen in quarter four, bringing the total for the year to just over 5000, it will, at this rate, take 27 years for the remaining women and girls to be seen and reported in the UK! But to be fair, because this estimate also includes women and girls from Scotland and Wales where different data collection systems operate, perhaps those years could be reduced to 25? How about that for another sensational headline?

Under 18’s

Because of the concerns that persist in regard to the number of children and young people deemed ‘at risk’ of FGM, the number of under 18’s seen is specifically reported and 35 were seen this quarter.

That figure is double the combined numbers seen in the previous quarters: 9 and 17 respectively. This brings the total over nine months to 61: approximately 1.63 per cent of all the women and girls seen. This figure is a long way from the epidemic projected among under 18’s.

FGM undergone in the UK

In this quarter, an interesting statistic was reported for the first time. Eleven women and girls who had undergone FGM were born in the UK and four were cut here. Additional information is not provided so we do not know at what age or when this happened. (Table 2.4c). Whichever, this tiny number is a far cry from the reports which suggest that FGM is a hidden problem that persists here.

Data accuracy

The number of data reporting centres remains low. Out of a possible 7875 GP practices in England who might have reported this time, only 17 did. And only 82 Trusts reported out of a possible 257. We know anecdotally that some clinicians are unable to centralise the data because their patients are refusing to consent to this.

The HSCIC does not appear unduly concerned, suggesting that the ‘number of organisations returning data for this collection will not be consistent in the early months of collection’. It also advises caution in interpreting the figures ‘because data completeness is often low and varies by region and submitter’.

Ongoing concerns

The report does not allude to the specific concerns that clinicians and others have expressed from the outset, and continue to have, in regard to the the collection and centralisation of this data. These include aspects like patient confidentiality, centralising patient identifiable data, consent and ‘slippery slope’ fears. The HSCIC explains (unconvincingly) that patient identifiable data is being collected as part of the current process to ensure data quality and to avoid duplication of records.

Even Caldicott Guardians, the senior people in NHS organisations responsible for protecting the confidentiality of patient information, are soon to consider the consequences of this system.

That is encouraging. If an NHS number and date of birth is enough for every other clinical condition reported, why are FGM patients treated differently? I doubt the justification is clinical.

Interestingly, a paragraph in the newly released Multi-agency statutory guidance on FGM (P34) says ‘It is important to note that the personal information held and collected under the FGM Enhanced Dataset Information Standard is not released to anyone outside of HSCIC. If these arrangements were to change, any information which was held prior to such a change would continue to be protected under the current arrangements.’ Does this suggest that a reporting change is being considered?

Why continue collecting data in this way

Double standards persist in the way the women and girls who have undergone FGM are dealt with in the NHS. Clinicians, with respect for their patients foremost in their minds, do not like having their ethical concerns ignored when collecting and centralising the required data, and this may help explain why the so few centres report.

GP’s are known to resent having to act as arms of the criminal justice system since a mandatory duty to report under 18’s with FGM direct to the police came into force in October 2015. They may well be choosing not to co-operate with the system.

While nobody doubts that accurate data needs to be collected about FGM, just as it is about other clinical conditions, this patently is not how it should be done.