Recently on the UK endo guidance and support group I run we have had members being told by specialists at BSGE centres that the BSGE standards are just 'guidelines' and that anyone with just an interest in endo can operate on severe disease in general gynaecology departments. I was told something similar by another BSGE surgeon last year at an endo function. This is absolutely not the case otherwise what would be the point of the specialist centres?
I have just put on a detailed file giving all the formal evidence from organisations such as the GMC, RCOG/BSGE, NICE and NHS England which definitively confirms the legal requirements of centres in terms of treatment specification, the advanced skills required and the right of women all over the UK (including the devolved boards) to equal access to centres for severe disease.
Files can't be shared but the link to the group is below if anyone has been told similar:
Thanks Lindle for all that you do; a difficult and almost thankless task representing and keeping on top of new developments/information so to speak, to have all of us no matter whatever stage of Endo we are at knowledgeable in order to make our well rounded informed choices going forward. Such a necessary lifeline. x
Again another interesting post. I’m seen in a bsge endo centre but when I look up my gynea online I’m pretty sure it just said endometriosis special interest, so if a gynea is working in a specialist centre does that always mean they are an endo specialist?
It's all explained in the file on EndoRevisited - link in my post above. But basically, yes the NICE guideline is just that and as such not enforceable when standing alone. But if such a guideline then becomes included in an enforceable regulation then it becomes mandatory to follow it.
The GMC regulates all doctors in the UK and their standards must be applied by law - such as Good Medical Practice. In 2012 the GMC brought in re-validation of doctors' licenses every 5 years and one of the requirements of re-validation is that they apply Royal College Standards. So in the case of gynaecologists it means that they must follow RCOG Standards. The 2016 RCOG Standards for Gynaecology Care require that NICE guidelines are applied.
But its only the devolved boards that need to rely on the NICE guideline. In England it is covered by the manual of Prescribed Specialised Services and the corresponding NHS England treatment specification for the treatment of severe endo in centres that confirms the requirements.
I can tell you one thing. Even if a surgeon says they are specialised in laparoscopic surgery and endometriosis, they might be performing ablation and not excision for example and therefore that surgery might not be very effective.
Unfortunately it's almost impossible to pinpoint truly well-versed, well-trained and experienced endo excision surgeons with a lot of experience in depp-infiltrating and stage 4 endometriosis.
[This post has been edited in line with Endometriosis UK's code of conduct]
For anyone reading this, the group mentioned has a list of surgeons they 'vet', which basically seems to mean fulfilling certain criteria on paper. They in no way approve them and the list is based entirely on patient feedback, with only positive feedback allowed. We all know how subjective feedback is and it is vital to have both positive and negative for any surgeon and even then we really have to step back objectively and make up our own mind. If we were buying a washing machine and we knew the website blocked negative feedback would we trust them?
The last time I had access to the group there were 8 UK surgeons being promoted on there. The vast majority of our excellent advanced excision surgeons are not included on their 'list' and they do not allow any discussion of all the many others we have, getting the most excellent feedback elsewhere. Conversely some on their sparse list are getting very bad feedback elsewhere. Naturally there are some 'better' than others in any field and that applies to all surgeons taken collectively, including on there also.
With regard to UK regulations, the treatment of severe disease must only be treated in multidisciplinary centres for obvious patient safety reasons. This is based on the US model. However, they advise women to be referred to 'a surgeon' on their list when on the NHS it isn't possible to be referred to an individual surgeon - for severe disease referral is to a centre and unless there is only one surgeon at a centre or an individual surgeon invites a referral to themselves specifically, then they can be allocated to any lead surgeon on the BSGE list under the centre. Since women are given to believe they have access to so few skilled surgeons many are raising funds by whatever means they can, with reports of even remortgaging their homes, only to sometimes have complex surgeries carried out by one surgeon working alone completely against regulations. There can be the most terrible consequences.
With regard to ablation versus excision, all advanced surgeons will use both but it is a matter of knowing when to apply which method and tool. There are some areas that ablation should be used for safety when excision would be too dangerous. I was aware of one thread when it was said that one of the UK's longest standing and most highly skilled excision surgeons only uses ablation simply because on the online profile it said something along the lines of 'ablation of endometriosis' under the skills. This is based on computerised codes for procedures and there isn't one for excision! On my group there is a member who had a most complex case, who had an 11 hour excision with this same surgeon said on there to only use ablation - he would not give up until he excised it all, including total pelvic peritoneal excision, a procedure requiring the most advanced skills. Such discreditation on social media is defamation of character just the same as in the 'real' world and if the surgeon involved got wind of it he could probably sue.
World renowned excision surgeon and founder of video laparoscopy, Dr Camran Nezhat, cited by laparoendoscopic surgeons as the father of modern operative laparoscopy, has written a paper to dispel this myth that excision is always good and ablation always bad and all women with endo really should read it. It is clear that ultimately it is the skill of the surgeon that matters over and above method or tool. Deep endo can only realistically be removed by excision and this is acknowledged throughout - to suggest that some surgeons remove deep endo by ablation is stating the impossible. If they use laser ablation to remove mild endo then it is perfectly acceptable as the father of lap surgery confirms below in the right skilled hands.
Please, anyone getting private messages recommending the group be very wary and judge for yourself. The file above that I have written aims only to give the legal position with regard to rights to treatment for severe endo and not to recommend or discredit surgeons - I am not in a position to do that. But all those on the BSGE list have the required fundamental advanced excision skills, with some naturally being more experienced than others such that some centres/surgeons may be more suited to the most complex cases than others and the surgeons on that list are not immune to this variation either.
I’m really struggling with this exact problem and running out of time as my surgery is due soon. Does this criteria definitely apply to private centres as well as NHS and do any of them follow it? Is it only possible to get this standard of care on the NHS?
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I am so frustrated I want to cry .... 
Chronic back, hip, leg pain. Sharp, twinge pain in right side of groin Could it be Endo?
BSGE check?
severity of endo
