International Development CommitteeSupplementary written evidence submitted by Alison Macfarlane, Professor of Perinatal Health, City University London

1. Background

This note has been prepared to supplement oral evidence given to the Select Committee by Efua Dorkenoo of Equality Now, with whom I have been working for some years on estimates of the prevalence of female genital mutilation in England and Wales.

2. Data Recorded About Birth and Maternity Care in England

When a baby is born in England, three sets of data are collected:

2.1 The parents register the baby’s birth at their local register office and the information they give is analysed by the Office for National Statistics. Birth registration is a legal process, so no clinical information is recorded, but the parents give their place of usual residence, their dates of birth and their countries of birth. Data from this have been used in conjunction with surveys of the prevalence of female genital mutilation (FGM) in countries where it is practised, to estimate the numbers of women born in these countries and giving birth in England who are likely to have been affected by FGM.¹

2.2 The baby is allocated an NHS Number and a small set of data is recorded, including the baby’s ethnicity as reported by parents’ or clinicians. These are now linked routinely to the baby’s birth registration data.

2.3 If the birth took place in an NHS hospital and for about 12% of home births, a set of data about the delivery are recorded in the Maternity Hospital Episode Statistics (HES). This has a field to record clinical diagnoses of complications in the mother, coded according to the International Classification of Diseases, but this classification has no code for FGM. If it had such a code, or if a special code were allocated, midwives and obstetricians could be encouraged to use it to record information which could be used to produce national statistics on the subject. Maternity HES does not record the mother’s country of birth but it would be possible to get this information by linkage with birth registration records and produce estimates of prevalence of FGM at birth tabulated by mothers’ countries of birth.

3. Towards Better Data on the Prevalence of FGM

3.1 Up until now, estimates of the prevalence of FGM in England and Wales have been derived by applying data about prevalence of FGM in countries of origin to women born in those countries who have migrated to England and Wales. This means that women born here or who have migrated here from other countries are not included and is also limited by lack of data about the actual prevalence of FGM in these groups.

3.2 The Department of Health has suggested that data about FGM might be collected through the new maternity dataset it will start collecting from hospital IT systems from April 1 onwards. Instead of using codes from an international system, this datasets uses tick lists for the presence or absence of pre-specified items. FGM is not one of these, so if it were to be included, an application would have to be made to the Information Standards Board, a committee which governs NHS data collection. As this new system has yet to start, no one knows how complete or otherwise it will be and whether the data in it will be fit for purpose.

3.3 Therefore in order to collect national data on the prevalence of FGM, the best approach would be to do a one-off audit of FGM among women giving birth, for a fixed period in order to test potential ways of collecting data routinely about the prevalence of FGM among women who migrated to the UK from FGM practising countries and among second generation women born in the UK or other non practising countries.

3.4 A revision of the International Classification of Diseases is currently under way, so it is important to lobby WHO to include codes for female genital mutilation, subdivided according to agreed definitions. This would facilitate the routine collection of data about FGM more widely, not just in the UK.

3.5 Meanwhile, an update of previous estimates¹ using data from the 2011 census would give more timely estimates of the prevalence of FGM than the previous estimates based on data for 2001, but funds are needed to do this.

Reference

1. Dorkenoo E, Morison L, Macfarlane A. A statistical study to estimate the prevalence of female genital mutilation in England and Wales. Summary report. London: FORWARD, 2007. Foundation for Women’s Health, Research and Development (FORWARD). 2007.

19 February 2013