17 July 2003

Mr Peter Bowen-Simpkins
Honorary Treasurer
Royal College of Obstetricians and Gynaecologists
27 Sussex Place
Regent’s Park
LONDON
NW1 4RG

Dear Mr Bowen-Simpkins

Thank you for your previous letter approximately March 2003 and for assisting us as far as you can. You have not stated that you have any medical qualifications or experience. Could you please pass this letter to someone that has the required expertise. I am sure that you are extremely proficient at your position of Honorary Treasurer however that does not assist us.

Due to many previous references to individual circumstances many of our group have had a discussion regarding your previous correspondence and have compiled the following questions. A minimum of two different people have asked the following questions. These are asked of you, as the doctors/consultants have declined or refused to answer them. If you refuse or decline to answer the questions appropriately could you please advice us who will?

Before going into theatre some of our group told the doctors not to do a hysterectomy under any circumstances.
Question 1a We understand that it is the doctors responsibility to write this information in the notes not the patients. Is this correct?
Question 1b If this is correct, what procedures are in place for this to happen and what is done when this does not happen?
Question 1c When this is noted on the consent form and the doctor ignores this what should the patient do?

Many are not told the risk of a hysterectomy as an outcome of childbirth and or caesarean, why by your own admission it results in 1 in a 1000 births .
Question 1d Could you explain why patents are not given the correct information to allow them to make / re-iterate informed decisions?

We now understand from other gynaecologists that all gynaecologists perform hysterectomies when consent has been specifically withdrawn.
Question 2a Could you explain why your members do this?
Question 2b How can a woman stop this being done to her. I understand from your web site that verbal non-consent is as good as written, so how do the patents stop your members ignoring their instructions?

Many of us found out at a later date that their cervixes had also been removed. None of us have been given a medical reason for this.
Question 3a Why is a patients cervix also removed, especially when they have refused consent for their uterus to be removed?
Question 3b Why do we also only find this out accidentally?

Many of us find it very concerning that after years of published evidence of how important the cervix is and how much more damage is done to the abdomen by removing it, that it is still done. Originally, it was removed, as there was no screening for cervical cancer. However that is now no longer a problem. There is also published research of how it effects many other parts of a person’s life.
Information A If however you dispute this please fell free to send us information that gives justification why this has been done to many of us. It would also be interesting to know why some people come out of the operating theatre with their cervix and others without it, in this situation. If there is a standard practice it has alluded us.

Many of us withdraw consnet in the presence of certain doctors and then a consultant who was not there authorises it.
Question 4a What is the procedure for telling a doctor new on the scene what the patients instructions are as they are not written down?
Question 4b Or as every gynaecologist performs non-consented to hysterectomies is it not deemed necessary?

Information Bi Could you please supply information that explains the legal minimum that is required to save a uterus and how this is expected to work.
Information Bii We understand that one of the steps is manual massage of the uterus. We have been informed that this can cause more damage. Your explanation would be appreciated. Another step is a hot pack. This also confuses some of us, can you explain how that is expected to work.
Information Biii Also the figure of 8 procedure.

Many of us, who have had this done, are lay people and would like to know why other things are not done to save at least part of our uterus, for example cauterising/laser treatment or removal only of the part that is damaged. Having a little of our uterus removed is far preferable to all of it being taken and our cervix. To keep as much of organs and our body in place even though we may not be able to carry children is far more preferable to having them removed. As I am sure you are aware that when a uterus is removed damage is done to the ovaries as a lot of the nerves and blood supply is connected to it, therefore damage is done to them.
Information Ci Please explain to many of us why cauterising, removal of the damaged part of the uterus is not routinely done or part of standard medical practice. We have heard of it happening in a few cases AND some of these women have also had more children.
Information Cii If you say that damage is not done to the ovaries could you please supply this information. This is especially relevant to all of us that have undertaken IVF treatment and not had good results due to the condition of our ovaries.

We have also found on the internet, a procedure that is 100% effective for stopping pph without resorting to hysterectomy. This has been around for approximately 10 years.

Question 5a Can you explain why you will not teach and/or instruct your members to use this procedure.
Information D You stated in a previous letter that all your doctors regularly update their skills and knowledge. Could you therefore explain to us why many doctors who retire within about 3 – 5 years of hysterectomising many of our group state that they do the things they do ‘because that is how I was taught’ over 30 years ago!
Question 5b Do you find that reason and outcome acceptable?

Many of us have requested information on what has been done to us.
Information E We would like information on what has been done to us, every cut and every suture. If you will not provide this information can you pass to us the details of a good medical book that we can obtain to have this information?

We are educated people that wanted and still want to make informed decisions. We also want to know what, why and how this was done.

We have discovered that three of us have had a something called vaginal pleating done to us. We have only been able to find a little information about this from an American source. We understand that normally when a cervix is taken the top of the vagina is tied up like a draw string bag.
Question 6a We would like to know why vaginal pleating has been done to us. From our experience, that is fortunately for others.
Information F Again we would like information on this as it has been very difficult to locate. We especially would like to know exactly how this is done.
Question 6b Why is not put in patents notes that this has been done to them?
Question 6c If a vagina tears naturally, and has to be re-stitched during hysterectomy is this put in the notes?

When a man has a testicle removed they are offered a prosthesis purely for aesthetics.
Question 7 Why after a 100 years of hysterectomies do we not have a prostheses?
Considering the effects of this operation on our bodies, and what happens to our figure (it now flops around all over, when we move or lie down) why can’t the muscles and ligaments be attached to hooks on a prosthesis of some kind.

Question 8 Many of us would also like to know why our organs are not automatically stored so that when transplants are underway we can not have them put back hopefully in working order.

We have tried to obtain the statistics about how often this is happening, however even though this information is for the public domain why can we not obtain the statistics for this.
Question 9a How many are sub/total hysterectomies, how many have their ovaries removed, and how many are also vaginal pleated?
Question 9b Is it true that every hysterectomy after pregnancy does not have to be reported to a central unit with a detailed explanation?

We understand that after a hysterectomy that we are not supposed to lift objects, not even an iron for 6 weeks.
Question 10 Why are we put on a ward sometimes less than 24 after a hysterectomy, that we did not know we were going to have or had refused consent for. We have to look after ourselves and a new-born baby or in he case of twins, new-born babies. We have to lift feed, lift change and lift and cuddle our child/ren. Why do we to do this when planned hysterectomies are not to do that and they are not dealing with shock or trauma either?

Many of the people I have spoken to keep being told that they are not dealing with this matter the way that they should be. They are told that their feelings are wrong. That their views are wrong and they are not ‘allowed to think like that’. I have found from the people that I have spoken to that depending on what has been done to them and what instructions they gave that they deal with it in different ways. Due to this could we please have the details that have been decided for how we should deal with this and the time scale.
Information F
i a total hysterectomy
ii a sub total hysterectomy
iii with ovaries removed
iv with vaginal pleating
v where the person woke up after a caesarean with no prior discussion to find any of the above done
vi where the person has specifically refused consent before a general anaesthetic
vii where the person has refused consent whilst awake on he operating table

One final point for now… on the form that is completed for a caesarean, there is a box that is ticked for the reasons for the caesarean. Why when a mother to be is told that she will kill her baby and possibly herself if she has a vaginal birth, that that the box that the doctors tick is mothers choice! Hardly a choice after being told such a thing.

We will reiterate - this letter has been necessary as the hospitals and doctors refuse to give us answers even via your frequently mentioned complains procedure, they are not legally obliged to give us the above information so do not. It makes our grieving process a lot more difficult when we can not obtain answers and are not treated with compassion.

Thanking you in advance for your time taken in this matter.

Yours sincerely

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