A contact tells me it's not really clear what I've found, so I'm planning to do a post with a bullet point summary of some key issues revealed by the Freedom of Information requests I've made.
In the meanwhile for anyone who may have the interest/energy, I've uploaded to Figshare a draft report of all my findings.
This dates from summer 2013 and has not been updated excepting a small clarification regarding non therapeutic circumcision (NTC) in Scotland, including numbers circumcised in the first 18 months of the formal infant NTC scheme, plus a reference to the apparent Scottish Government ignorance of its cost.
Any comments and feedback welcome, either below or at info@ukcircumcisionreport.org.
More returns and summaries, in word, excel and pdf are found at http://figshare.com/authors/Laura_Macdonald/654498
Thanks for reading.
The world of hospital/medical funder databases is a confusing one - even (I believe) to some of those familiar with the process. I was not familiar with any aspect of diagnostic coding, health resource group (HRG) coding, or even what the definition of an 'admission' is within the NHS*. I didn't know what a 'disposal' was, or to be wary of the difference between 'episodes' and 'patients'** when counting complications and calculating rates. So I've had to learn as I went along. And I've made lots of mistakes. One of the purposes of this blog is not just to share what I found, but also to help others to undertake similar research without such a steep learning curve.
While freedom of information legislation and hospital/funder databases will be different everywhere, some of the issues I've encountered will be similar.
Below is an example of a request I wrote around 18 months after beginning my research and in which I refined my original questions to generate more useful results.
Dear Sir/Madam,
Last year you kindly provided information on circumcisions and subsequent hospital presentations in 2009. I am now writing to ask if you would please provide the following:
1. a breakdown of all procedures funded under HRG codes: LB29B, LB30C, LB31Z, and LB32C in patients aged 0-17 in calendar year 2011, to include age, diagnosis, OPCS code, and length of stay.
2. what was the number and cost of non therapeutic circumcisions of male patients aged 0-17 in calendar year 2011?
3. please use a patient ID matching check to establish how many of the patients in question 2 presented in A&E within 30 days of the surgery, and provide age, presenting complaint and time in days from the surgery.
4. as above, please establish how many of the patients in question 2 were readmitted to hospital within 3 months, providing age, diagnosis on readmission, source of readmission (eg emergency or planned), time in days from the surgery and length of stay.
5. finally, as above, please tell me how many of the patients in question 2 have been subject to another urological procedure in the period from the surgery to the present date - please provide brief details including age, OPCS code and time between original surgery and the new procedure.
With many thanks for your help
Laura
The response to these questions can be found here and my annotated version of the main findings here. It reveals a substantial toll of harm, suggesting that relevant episodes in A&E were around 8% of original surgeries, with admission episodes at >3% and admission episodes with length of stay (LOS) of 1 day at >1%. This is relevant because it means complications were not rare; even the most serious complications were not rare***.
* The term 'admission' can include being held in an area of A&E for part of a day or spending part of a day in a ward - these admissions will be coded as having a LOS of 0 days. These shorter admissions matter because once in the system, the cost of being held in a hospital for treatment is significant, whether or not you actually spend the night.
** the difference between individuals experiencing complications and episodes of complication presentations seems an important one for analysing circ. adverse effect data. It seems that - perhaps particularly with little children - those who experience issues post circumcision may be brought to A&E or a doctor several times. Clearly this has emotional implications for the individual and the family, as well as resource implications for the funder who picks up the tab...I think it's also a way of showing just how invasive and painful male circumcision can be. In one case reported by a hospital, a small child repeatedly presented with genital pain post circumcision more than a year after the original operation.
*** A paediatric urologist informs me that rare generally means less than 1 in 100. If you understand otherwise, please tell me in the comments below, and ideally provide a link to guidance or a research paper.
I'm a member of the public who's interested in exposing the realities of infant and child circumcision. Between 2009-2013 I used the UK Freedom of Information Act 2000 to mine data from the UK National Health Service on circumcision incidence, diagnosis, and adverse effects*. I also collected information from the General Medical Council, local Safeguarding teams, A&E departments and police, medics, the coroners service and a leading pathologist - covering the morbidity/mortality seen following private/ritual child circumcisions.
As a lay person I didn't know how to publicise the data but knew it was highly relevant to the ongoing debate. Initial promising discussions with a medical journal faded away after a senior urology advisor raised concerns about a potential religious backlash and questioned the high rates of circumcision re-admissions which some hospitals had reported.
So I was asked to find a medic who would quality check my data. Having tried and failed to engage with several paediatricians I took annual leave from my job and wrote the paper myself. This submission failed to pass initial review, and though I was encouraged to try again, I was advised that publication was unlikely without the involvement of a doctor. At this point I gave up.
More than a year on, child circumcision is very much in the news again, with Denmark debating an age threshold, while the US Center for Disease Control is promoting child circumcision. Yet again, the information for funders and consent givers is highly misleading: the CDC suggest for example that neonatal cutting has only a 1.5% risk of complications, although US data suggests surgical follow up is common.. and many studies show a much higher rate of even early adverse effects. Religious commentators continue to assert that their ritual is very safe - even where this means covering up the results of their own audits...
So I feel it's time to put what I found on record, so that it might be cited, and secondly to try again with some new freedom of information requests, the results of which might be more formally published. I've registered an account at research portal Figshare, and over the coming days and weeks will upload returns from hospitals and commissioners across England, on circumcisions performed and subsequent issues treated in hospital. My data is incomplete but suggests that in 2009, the UK NHS spent c£2 million on the religious/cultural circumcision of around 4,000 children and may have since spent >£100k on treating complications**. It also dealt with the sometimes drastic consequences of private/ritual child circumcisions, including infants admitted to hospital with life-threatening haemorrhage. As a third and linked issue, the NHS performed far too many therapeutic-coded circumcisions in boys unlikely to require this surgery. There's a clear postcode lottery regarding whether a male child will grow up with his genitals intact...
Here is a first example of the kind of return I got regarding specifically religious circumcision on the NHS. It shows data from Oldham, in north west England from 2009: one of around 150 English NHS funders (as was) and one which in this period performed 254 religious child circumcisions. This funder was particularly willing to engage - not all were.
See http://figshare.com/authors/Laura_Macdonald/654498 for access to other uploaded NHS responses and analysis.
More to follow. Please comment and question - and leave me your email if you'd like me to get in touch directly.
* I began this process as a volunteer for NORM-UK, but completed it entirely independently and no longer have any involvement with the charity.
**some complications were so significant that a children's hospital raised concerns with local commissioners - to no response
