What does the BGSE actually do and why are their doctors recommended as being better than others ?
I just looked at their webiste and the small print states
"The BSGE defines standards for EndoCentre accreditation but this does not include any clinical assessment or regulation of the doctors who work in the Endocentres."
"If you have concerns about a doctor, or the quality of care received you should use the relevant Trust’s complaints procedure or contact the Medical Director of the Trust directly."
I take this to mean that the BSGE do zero assessment or rugulation of their doctors who are members and that they do not investigate any allegations of poor or malpractice amongst their members.
Does this mean that BSGE is just a group you pay to join and then you can market yourself as a better doctor but there is no actual foundation to these claims?
BSGE please explain what you do and why you members should be considrerd better than other doctors . Is it because they "share knowledge ". Or is there sme actual concrete assessment, exam, proof required to join ? Can someone enlighten me as to why BSGE doctors are classed as better ?
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Avourneen
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I guess what is shocking is that this organisation BSGE who advertise themsleves as being a society of high quality reputable endo specialists aren't. They are just a group of any old gynaecologists who pay a fee and dont have any special training , experience, exams to take relevent being a spcilaist gynae surgeon.
They basically just pay a fee to BSGE which is essentially a marketing group to say that they are better doctors than other people. In addition BSGE don't have any responsibilty for checking if their surgeons are accused of malpractice etc.
I think it's pretty shocking for a group that presents itslef as a sort of quality assurance/ regulatory body is actually just a bunch of people you pay money to and they get put on a list.
It's something like if the FSA 9financial services authority never checked their banks etc were following the law or properly qualified and then also ignored all requests to look into swindles.
Sorry - I didn't see where it said that BSGE definitely do just pay a fee to use the name. I thought it was a question you were asking as to whether this was the process, rather than evidence being presented that this was the case!
A very informed user ( @Lindle ) on this forum runs a endometriosis information group on Facebook that has a file on BSGE accredited endometriosis centres and what reporting and evidencing they have to submit to continue to be included on the accredited centres list. This is for centres only, and not the individual doctors. As far as I understand it the doctors have to abide by the BSGE endometriosis centre criteria while working in the centres, but are not necessarily held to the same regimen when working (often privately) elsewhere.
I'm still sifting through all the information myself, but the reality is that the BSGE only define the work of a centre overall and cannot take the legal implications of dealing with malpractice cases by recommending individual doctors - basically in the same way Endometriosis UK or any forum members here can not comment on specific doctors.
Happy to stand corrected if Lindle or someone else knows better/ more!
Have a look at the below though! very informative!
Thanks for your reply. I'm afraid I dont have facebook can you briefly sum up what BSGE endometriosis centre criteria are ?
I will have a better trawl through the BSGE website but it looks like for doctors they just pay some money then get to call themselves BSGE doctors. Not a very demanding set of criterea !!!
So my other question is if a doctor were guilty of repeated malpractice how would other victims get to find out about this? I remember at one private hospital in Birmingham a couple of years ago a private doctor had been carrying out private mastectomy operations which were enitirely unneeded by his patients. Basically mutilating patients because he wanted to make more money and telling every women he met they needed this operation.
If women are not allowed to discuss their surgical out comes how can such bad actors be detected by hospitals or patients?
If one patient has a bad experience and is silenced how can patterns of poor or malpractice be indentified ? Especially if the professional body in charge carrys out no assessment of surgeons practice or of allegations of malpractice?
In this case all that happens is the pateint goes to the priavte hospital and complains about a doctor who is paying them to use their space. That could mean that the compliant is over looked or brushed under the carpet and the complainant certainly would not be able to find any other victims of malpractice etc.
This is an extreme example but it shows that there is little or no oversight going on.
I'm afraid you are getting this all wrong. First of all there is a great difference between BSGE registered and BSGE accredited, the latter applying to endo centres.
The BSGE is an association open to any medical professional with an interest in gynaecological endoscopy from students/nurses to consultants. It is like any professional organisation attached to a profession that people in the profession can register with. So that is registration. The endo centres are accredited which is different. The BSGE isn't attached to the NHS or any regulatory body so can't assess surgeons.
The BSGE is linked to the RCOG - the Royal College of Obstetricians and Gynaecologists - and both are registered charities.
Quotes from the RCOG website:
'The British Society for Gynaecological Endoscopy (BSGE) exists to improve standards, promote training and encourage the exchange of information in minimal access surgery techniques for women with gynaecological problems.'
'The Royal College of Obstetricians and Gynaecologists (RCOG) works to improve health care for women everywhere, by setting standards for clinical practice, providing doctors with training and lifelong learning, and advocating for women’s health care worldwide.'
When it comes to BSGE centres, the BSGE sets the requirements to be a centre (link below) and the RCOG has developed the training curriculum. So effectively a framework is formed within which surgeons should operate. But as they are charities they have no role in regulation.
When it comes to the actual specification to be applied to actual surgery, in England this is set in law by NHS England (link below). They commission the treatment of severe endo (pay for it) and are the body to which complaints would be sent should the BSGE/RCOG standards not be followed. Also the GMC (General Medical Council) which is ultimately the regulatory body for all doctors, could become involved.
So you are saying BSGE centres have accreditation which does require surgeons to have an experienced team and to have carried out a certain number of operations per year and therefore be experienced in specialist cases but that BSGE registered it just a professional group surgeons can join that does not provide any assessment of their skills or require any special advances in the doctors skills etc They just pay a membership and join ?
Are you also saying that the BSGE and RCOG have no regulatory role ?
I am just trying to clarify who does what.
Lidle as you seem to be appearing on here and quoted by others an an expert could you tell me why you think so amny women are going through multiple excision surgeries with recommended doctors and having no improvement in the condition or it worsening ?
Surely when I read here about women have multiple surgeries and when I meet so many woman who have had their excision surgerys only to be told months later by another surgeon that they still have lots of endo left inside and need another operation there must be something not working.
At my last operation with one of these accredited centres I met 3 other girls all of whose operations failed and all of whom need a further operation not two years down the line.There was one girl there who had had 16 operations and who atill had endo.
If the system is so brilliant and the surgeons all shining examples of competence why are so many women on this site having laparoscopy after laparoscopy and are yet still in excruiating pain ?
I am trying to find out why this is happening because it doesnt seem right. Your views would be most appreciated.
Clearly as in any profession or industry feedback is very important and so if a woman feels that a surgeon has failed them they need to complain so that this can then be taken into account.
In addressing 'If the system is so brilliant and the surgeons all shining examples of competence why are so many women on this site having laparoscopy after laparoscopy and are yet still in excruciating pain ?' you seem to suggest that excision is or should be a magic cure but that is far from the case.
In terms of continuing pain there can be many pain generators present in a woman who has reached the severe stage of deep infiltrating endo that cannot be cured by removing the endo. A common source is pelvic floor dysfunction meaning that the woman has got so used to guarding against pain that the pelvic muscles are too tight and this can be excruciating. Once this is set in it can take a very long time to address with pelvic physio to down train the muscles. Removing the endo won't cure this. Endo can infiltrate nerves and removing the endo won't cure that if they are damaged. Sometimes nerves can recover but maybe not if they are too damaged. The advanced surgery required for excising deep endo is as complex as it gets and represents a significant trauma to the body and can in itself cause damage no matter how skilled the surgical team is. A woman could have excision by the most highly regarded surgeons (with no regard to what society they may be a member of) and end up in worse pain than they were before. The more surgeries there are the more adhesions there can be and this then adds to the complexity and invasiveness required by the surgeons that can then just cause an ongoing cycle of surgeries and unresolved or increased pain. Yes, we could say the surgery has failed but that isn't the same as saying the surgeons have failed. There will of course be cases where the surgeons have failed the patient by not following standards or making inappropriate decisions during surgery but in a large proportion of women with ongoing pain after excision it won't be the surgeons fault. A very frank discussion needs to take place prior to complex excision as to the risks involved even in the most capable of hands which balances the woman's current quality of life against the potential benefits and potential risks, which aside from the normal risks of surgery (infection, DVT, bleeding etc) include risks of further damage and pain and damage to healthy organs. We really shouldn't underestimate the scenario that faces a team of surgeons when they go in.
It should be said that many women will benefit greatly from excision but when meeting others in hospital with ongoing problems this doesn't take account of all those who have been helped.
Then there is the nature of endo itself. Severe endo is often retro/sub peritoneal so can't be visualised at a lap or at least the depth can't be assessed. This can be assessed my mapping the pelvis with pre-lap scans (MRI/TUS) but they don't always pick it all up. The only option then is to dig for it as it were and for obvious reasons cutting deep into muscular structures that have been invaded and replaced by deep fibrosis (that can be hard as concrete) is going to cause significant trauma no matter how skilled the team is with risk of nerve damage etc.
Excision is in any event no cure for endo and even if it does appear that all endo has been excised there can be endo cells present within structures that is not visible or is undetectable on scans so can then continue to grow down the line. And new endo can form altogether and continue to grow. The rate of progression of any retained/new endo depends on the woman as each woman's disease is as different as her DNA. Unfortunately it is the case that some women seem to have very aggressive endo which reoccurs quickly and in others one excision goes on to resolve their pain forever. It is a very inexact science and unfortunately the skill, experience and training of a given surgical team or effectiveness of a system are only parts of it with no guarantees of what we might define as 'success'. Ultimately, excision is what we have to 'manage' severe endo at one point in time with variable outcomes.
Thank you for your answer and explanation. Do you think then that surgeons are frequently misleading patients by telling them that their excision will definiely clear up the problem and once they have had the operation their pain will almost certainly be gone?
This is certainly what my private surgeon assured me of and the only riks he mentioned at all were the risk of infection or the risk of having the change to open surgery if things were worse than anticipated.
Non of the issues such as adhesions were brought up at all.
His advice was the same to the other three girls who also had unsuccessful operations.
But my main concern was that other doctors giving second opinions said it was not possible for so much endo to have grown back in such a short time and that only a faction had been removed.
Perhaps if excision is not a magic bullet surgeons should not be presenting it as such to patients?
Also perhaps there should be some research into which techniques are more effective for reducing adhesions. Various surgeons have techniches which they claim can really reduce them, shouldn't these techniques be studied and compared to reduce the problems caused by adhesions.
If excision is so hit and miss shouldn't patients be made aware of this ?
Surely advising people to have another operation after 15 previous ones and promising that only you as the doctor in question can take away that patients pain is just dishonest ?
I am just concerned as very few people are saying that they have had excision and that it has been successful. Perhaps there should be more appraisal of why some excisions work and why some don't to allow doctors to give better advice.
Unfortunately, in the private sector the more work the doctor can persuade you to have done the more he/she earns so there is an inherent conflict of interest.
I think that very many private endo centres present excision as a magic bullet with few rsks which will end the patients suffering. If patients were told honestly there are 101 reasons why it might not work and as surgeon I not at all responsible if it doesn't (which is what your answer is basically saying) far fewer women would sign up for excision surgeries.
I think it's important that the way surgery is carried out is improved and that breakthrough techniques are assessed and brought in if they do improve outcomes. I think surgeons performance/outcomes should be monitored as I am quite certain the way the operate must make some difference. Otherwise how will treatment ever improve ?
I’m under BSGE, excision has never been sold as a cure! In fact the opposite! I have been told it will unlikely cure me, and in some instances can make it worse! I’m on my second surgery after being managed medically for the last 5 years! This time it’s all coming out!.. So not everyone has lap after lap! Nor does each surgeon suggest such! My first surgery was so complex, repeated surgeries weren’t an option! Since almost dying from complications of Endo, they’re now going all out to get it back under control by total hyster!
You paid a private surgeon, what do you expect him to say(?). You wouldn’t get a car salesman calling his car a banger!
But don’t take the words of 3 girls! Because BSGE non private is nothing like that!
Hi Hello,The surgeon I am reffering to owns and works at a BSGE centre and is BGSE accredited. We have a facebook group with about 40 women now who have had terrible experiences with the same surgeon. He absolutely sold it to me and all these other women as a cure. Of course not every surgeon does this but pretending all BSGE surgeons and centres are fantastic is not realistic either. Thank God this chap is now retiring and will not be able to carry out other botched operations. This guy was on the NHS for years before going private. My point was that there are some surgeons who are doing a really bad job and very little is done to weed them out. BSGE have standards for their centres but no specail extra surgical tarining for their surgeons and no regulatory or monitoring role at all.
Tbh I find your response a bit harsh and extremely unsympathetic. Saying well you paid a private surgeon (who is BSGE registered and accredited) when he did an appaling job of my operation and so many others, sort of sounds as though you are blaming me for having had a botched op performed by someone who should frankly be struck off. Many of the women who have contacted me have had horrific experiences one having undergone 18 operations under his advice in 20 months.
personally I think women with endo should be sticking together and trying to get the best care for each other and that rogue surgeons should be identified and struck off. I hope the same guy isn't carrying out your next op.
I am not unsympathetic at all, but my point is still valid! You went private, for the ‘best’ treatment, treatment not cure, as Endo is a chronic illness, it is obvious he was going to sell you the dream! It is up to the patient, not the Dr to find something that works for you… I have tried everything 5 x over in a bid to control my disease. That includes Zoladex, god knows how many times, progesterone that hospitalised me, and the combined pill back to back. I eat clean and use natural remedies to keep my bowel functioning!
I would fully expect a private surgeon to throw the whole surgery option at me! His livelihood and job depends on it!
I don’t know how you can say his surgery was botched? Mine failed too under the NHS hence why I was on 3 monthly follow-ups for the last 5 years! It is common for Endometriosis to come back after surgery! Then additional risk of adhesions that worsen pain.
It really is important people educate themselves, and not look to sales people for answers! I’m not being unsympathetic, I am being real!
I hope you find relief from your chronic disease, and please do try everything 🤞🏻 you find your own management plan that works for you!!
You may regard it as stupid and naive which is what you are implying but I thought as a professional person he would offer the most sutable treatment and be honest. I think actually that doctors should be honest and held to decent treatment standards you clearly think this is the patient's responsibility.
I did read a great deal about this surgeon and he was recommended by many so called endo support sites and cited as one of the best in the country but I really can't understand why you seem to be desperately sticking up for surgeons who do a bad job and blaming their patients.
I don't really want to go into the details of my case with you it's with the GMC and pretty bad, but there areas many other women on this Facebook group of his previous patients who have had horrific experiences. Life changing accidents in several cases.
If patients do not demand better treatment and higher standards care for endo will never improve. I eat very carefully already and take various suppplements but it does not stop the disease progressing and does little to improve the pain.
I believe we need far more research, more awareness from GPs and the collection and comparison of data from surgeons to assess the effectiveness of individual surgeons and different techniques used.
I think that surgeons who are carrying out substandard operations and having repeated accidents, mixing up their patients scans and notes between patients, and suggesting repeated surgery in cases where it is not necessary should be called out and should be removed from practice.
You are quite entitled to disagree but it is pretty insulting to the women who have had their lives ruined in some of the cases. I did think this was a forum for endo sufferers to support each other and I'm pretty baffled by your stance.
I think we should first bear in mind that we are only likely to encounter women with problems on forums like this and in hospitals dealing with severe endo. So that isn't going to be representative of all women undergoing complex surgery. We can't really know how many are OK and never have need to come back.
Surgeons who tell women that they will remove all their endo, it will never come back and their pain will be relieved are absolutely misleading patients. Unfortunately this seems to be borne out of arrogance in some cases. The best surgeons should be completely honest about the risk of it not helping or potentially making it worse.
I appreciate your point that forums like this are going to play host to more women with serious problems that is indeed a fair point.
But if no records are kept of how excision surgeries help or don't help women how can we know full stop whether they are an effective means of treatment ?
Couldn't we tell how many women are okay and never have to come back for repeated operations if records of how each woman's outcomes were kept ?
Surely a national database could be set up where all endo operations were recorded with their outcomes followed up after 1 -5 years?
If we have no facts or figures available surely the proceudre is no longer evidence based?
For example a deacde or two ago it was the thing for shildren to have tonsils removed. When research was done on the effectiveness of the procedure it was found to be unneccsarry in the vast majority of cases.
If no evidence is recorded of womens experiences or outcomes because it's deemed to dificult to measure any outcomes as there are too many variables isn't that just washing your hands of all principles of evidence based medicine and saying well you can try surgery but there it's just pot luck. To me pot luck doesn't seem adequate.
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