Thursday 24 March 2011

Howe did he do?

Late last year, Baroness Smith of Basildon asked questions about endometriosis in the House of Lords. Earl Howe provided answers. I don't think them to be satisfactory. So, I wrote and told him so. Here is my letter:

Friday 11th March 2011

Dear Earl Howe,

I write regarding your answers in response to Baroness Smith of Basildon in the House of Lords, on 20th December 2010, regarding endometriosis.

Concerning your answer to her first question, it’s not clear what the government is doing to ensure greater awareness. The online solution only works for people who have Internet access and know about this terrible condition. A purely online solution is not considered an adequate way of informing the public.

In the UK’s Endometriosis Awareness Week, which ran from 2nd to 8th March, there was no apparent plan to increase the extraordinary lack of public knowledge and awareness.
There was no mention (on 2nd March 2011) to be found of anything about the Endometriosis Awareness Week on any of the NHS websites you mentioned in your answer.
The NHS Choices and NHS Direct websites do feature very informative advice about endometriosis but they are online.

The Department of Health’s website features nothing at all about endometriosis. This can only add to the number of ill informed GPs, obstetricians, and gynaecologists, when the government’s own dedicated website of guidance for NHS professionals does not even mention endometriosis.

I would like to know what the government will do to greater enhance the public awareness of endometriosis among those without Internet access, and to better signpost for those that do, the online material on the NHS websites you mentioned in your response.

I would like to know what the government will do to ensure that the guidelines for healthcare professionals will be used by those for whom it is intended.

Your response to Baroness Smith’s second question doesn’t seem to take in to account that some gynaecologists still suggest the unreliable transabdominal ultrasound scans to determine, conclusively, the presence (or, indeed, absence) of endometriosis in a woman or girl’s pelvic region. As the Royal College of Obstetricians and Gynaecologists states in its “What you need to know” information leaflet for patients, published November 2007, “A normal scan does not rule out endometriosis”.

Without a gold standard laparoscopy having taken place, women and girls are continually being told that, from results of a transabdominal ultrasound, and sometimes, equally unreliable blood tests for CA-125, they “do not have endometriosis”.

I am collecting a growing number of case studies to show that women are suffering unnecessarily due to GP and, at times, gynaecologist ignorance; each one was told that, because the ultrasound scans were “clear” and/or blood tests were “normal”, there was nothing wrong with them. This sentences countless women and girls to years of neglectful agony because some gynaecologists and GPs ignore the guidelines by which they should work.
I would like to know what data the Department of Health has on:

i) The number and percentage of patients diagnosed with endometriosis (compared with other countries, if possible);
ii) The number and percentage of patients diagnosed with endometriosis using the gold standard of a laparoscopy; and,
iii) The average waiting times for treatment after diagnosis of endometriosis.

I would like to know if these findings have been published, and, if so, when and where. If not, I would like to know why.

With regards to your answer to the final question, despite endometriosis being a specific topic within the undergraduate medical curriculum and in core specialist medical training for obstetricians and gynaecologists, many among them seem staggeringly unfamiliar with the disease. This is true of GPs, too, about the symptoms of endometriosis, visible presence of it during laparoscopy, as well as treatments, and overall impact on the health of those directly affected. Comparisons with, for example, the French system suggest that we are lagging behind and have a poor performance, and are severely letting down and prolonging the suffering of our women and girls.

There is a growing feeling amongst those who suffer that the training for GPs is inadequate and very far from satisfactory, based on the experiences of women and girls who have suffered the most horrific pains. Time and time again, doctors do not apply what they have learnt, and what they have learnt seems gravely insufficient for the patients in their care.

Fortunately for me, and quite rare among the women to whom I have spoken about this, my own GP has been very good in listening to me through the years and has acted efficiently and with empathy. I am exceptionally grateful to him and his continuing high standard of care. Conversely, since I first sought help with my own “bad periods”, aged 18, I have seen 6 gynaecologists before last year finally being diagnosed with extensive endometriosis, aged 28. In all, I have suffered with period troubles for over 16 years, and the outlook for me is not one of a pain-free life ahead.

I would like to know what checks are undertaken, by whom, and how often, to ensure that what doctors are taught about endometriosis goes on to be practised. So often, correct diagnoses and treatments, that are required to prevent lives being ruled and destroyed by endometriosis and its unforgiving symptoms, are unnecessarily delayed, sometimes for over a decade, during which time severe irreversible internal damage occurs, not forgetting the all too frequently mentioned cyclic and chronic excruciating pain.

For your information, I am copying this letter to Baroness Smith of Basildon, Jane Hughes at the BBC, BBC Look East, Endometriosis UK, Royal College of Obstetricians and Gynaecologists, and Fiona Godlee, the editor of the BMJ.

I look forward to your reply.

Yours sincerely,

Miss Lucy Palmer.