Access to FGM patient information is inadequate

NHS recording and centralising sensitive, patient-identifiable, FGM data has been of concern to professionals and some members of the public since the process began in April 2015.

But despite the concerns, the requirement became mandatory between July and October 2015. It applies to clinicians working in NHS acute healthcare trusts, mental health trusts and GP practices. The collected data are sent to the Health and Social Care Information Centre (HSCIC), where the ‘information is anonymised, analysed and published in aggregate form’.

We are told ‘Women and girls are advised information about their FGM will be collected by NHS Digital. And there is a patient information leaflet, available in several languages, to explain this to the patient. These can be ordered by visiting the Health and Social Care Publications Orderline.’

The responsibility on health professionals to ensure that patients, many of whom are non-English speakers, are well informed during these consultation weight heavily. So I visited the NHS site to view the material accessible to them for patients and the public. I will not be commenting on the content of the information in this post.

The introductory page lists the latest and most requested NHS publications. None related to FGM however but a message at the page end advises: ‘If the publication you require is not in the above list, please use the search facility.’

I did this, initially on 29/30 November and again on 2 December, first as a member of the public, then as a health professional, by putting ‘FGM’ into the search box. I was taken to the same page Welcome to the Publications Orderline each time. There it says ‘Copies of most printed publications can now be ordered online.

I chose the ‘view and download’ option. A number of FGM related leaflets are listed, beginning with ‘A statement opposing FGM Amharic (2015)’.

Introductions to all of the patient leaflets are in English and state: ‘Female Genital Mutilation (FGM) is child abuse and an extremely harmful practice with devastating health consequences for girls and women. Some girls die from blood loss or infection as a direct result of the procedure. Some women who have undergone FGM are also likely to find it difficult to give birth and many also suffer from long-term psychological trauma.

What this statement is for: You should take this statement with you when you go abroad. You can show it to your family. This makes it clear that FGM is a serious criminal offence in the UK with a maximum penalty of 14 years in prison for anyone found guilty.’

‘To place an order for hard copy, you need to be logged into the system. Clicking the order button while not logged in will give you options to do so. Alternatively, you can download a PDF if the download button appears on the page.”

The download button was initially available for the English version only but became available, in five languages, over the course of a few days. Perhaps I had chosen times that the information was being transferred from an old gov.uk site to this one because Amharic, Arabic, Farsi, French and English versions are now accessible as downloads.

But by clicking on No 2904069 (6th from the top) I was taken to the site where statements are still available in Turkish, Urdu, Farsi, French, Somali, Swahili, Arabic, Amharic and Tigrinya, although not in alphabetical order.

Because the introductory statement for all languages is in English a (big) assumption is being made about the IT literate, non-professional person’s ability to access the page, as well as their ability to search out a non-English version, through the medium of English.

Or perhaps it’s that the site is designed solely for professionals acting as gatekeepers, leaving patients reliant on accessing these leaflets through them? If so, surely they all need to be available as downloads, all of the time?

FGM Patient Information Leaflets are listed towards the end of the same page in 11 languages, including English. Indonesian seems to have been added most recently, perhaps in response to, or to coincide with concerns raised about the practice there?

Leaflets are described as ‘A leaflet to give to patientd (sic) as part of discussions about female genital mutilation (FGM). This is also for use in conjunction with FGM Enhanced Dataset. That link is not live (404 NOT FOUND).

The download link for the English version takes us to this NHS page: ‘More information about FGM’. And each language has translated versions available as pdf’s. But, as with the statements, introductions are all in English.

Does this back-up service for professionals through these official sites serve them well and reliably when dealing with patients who’ve undergone FGM? Does it serve patients well?  I leave it to you to judge but in my opinion, it doesn’t.

Update 22 Dec 2022

Female Genital Mutilation (FGM) enhanced dataset: GDPR information

A summary reporting why and how NHS Digital processes patient data in the FGM enhanced dataset and patients’ rights is accessible here.

The controller is NHS Digital

Data is kept for eight years minimum from no longer required.

Patients’ rights include: be informed, access to data, rectify or change it, restrict or stop processing it.

Rights do not include: object to it being processed, erase or remove it, move copy or transfer it, know if a decision was made by a computer rather than a person.

How the information is used: collection of data on women and girls who have had FGM or are at risk of it. This is to improve how the NHS supports them and plan the local NHS and other services needed now and in the future

How can a patient withdraw consent? They can’t because ‘consent is not the basis for processing’ data.

The legal basis for holding this data? It’s a legal obligation

The legal basis for collecting the data? A legal obligation (Direction)* and management of health and social care systems

Data comes from NHS Trusts and General Practices (GPs) via Clinical Audit Platform (CAP)

Is the data subject to decisions made solely by computers? (automated decision making). No

The data is not transferred outside the UK

Who are recipients of this data? None

Does this contain sensitive (special category) data such as health information? Yes