I am considering asking for a referral to a specialist endo centre. My GP would be happy to refer me, so I'm very lucky in this respect. Unfortunately and disappointingly there isn't one in my city, which does have a very large teaching hospital. There are however four specialist centres within an hours drive. Is anyone aware of any data for comparing the clinical outcome of the different specialist centres? And possibly the outcomes at my local hospital?
I'm also not sure if I may not be better of having appointments and operations closer to home.
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Mtbeike
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you could contact the BSGE to see if they keep records comparing the endo centres, but there is also a list of provisional endo centres , have you checked that out to see if your hosp is on the list?
I have been to the provisional centres that impatient mentioned, and both accused me of being mentally ill. Recently I went to an accredited centre and they have been amazing so if I were you, I'd go to an accredited centre. My local hospital messed up and the provisional centres were no help. If there is an accredited centre near you then I'd go. I'm having surgery at one that is 4 hours away but he's the best I've seen in the UK so far.
I recently found out at my support group that to be registered as an endo centre they only have to have performed a low number of operations. Some other surgeons with great expertise in this area are not working at registered centres as they're simply too busy to have logged their operation stats and figures . Therefore I'd recommend looking at the surgeon rather than hospital in some cases.
They only have to report a low number of "complex surgeries" juebaloo - they don't report the standard endo ops, only the highly technical ones, plus the added bonus is they have endo specialist urologists and colorectal surgeons which complex endo surgery tends to need, rather than just gynaecology surgeons.
It is essential that there is sufficient throughput to maintain surgical skills for the most complex cases. Whilst all degrees of severity of endometriosis may be treated within the service it is a requirement that at least 12 cases of recto-vaginal endometriosis which require dissection of the para rectal space, are treated by surgery each year. This is defined by a procedure to remove rectovaginal endometriosis that requires dissection of the pararectal space and must be recorded on the BSGE database. Whilst this can include open surgery it is expected that this will usually be undertaken laparoscopically "
I was given this information by a surgeon and our local one performs over 150 complex surgeries a year (Imogen with urologists and bowel surgeons) and fits all the criteria listed but the hospital isn't registered. I just meant you can find a brilliant endo specialist who may not work in a registered endo centre.
It is fair to say that any accreditation scheme will have its drawbacks, but the BSGE scheme has an overwhemling majority of benefits. Centres to apply for provisional status have to complete at least 12 operations each year where they have to enter the recto-vaginal space - usually indicating highly complex surgergy. If they enter all the data for at least 12 operations in 1 year, and achieve all the other criteria, then they will be given full accredited status in Jan the following year.
However this is just one criteria and there are lots of others - including as has been pointed out, a multi-disciplinary team, which includes an Endometriosis Specialist Nurse. At Endo UK we have seen just how important a specialist nurse is in providing more support, information, guidance, etc than is available from the consultants.
One of the other criteria is that the centres are willing to share their data and monitor patients and do follow-ups according to the structure laid down by the BSGE. Some centres don't wish to do this. By analysing and monitoring patients from all centres, together with their outcomes and treatment paths then it will become clear how best to treat women to get the optimum outcomes. To have long-term, comparable information from large numbers of women is a key aim of the BSGE accreditation scheme and another reason as to why Endo UK supports the scheme as a whole.
Of course there is room for improvement and the BSGE Council is working hard to achieve this and Endo UK will aim to influence these where we can. There are centres who do not wish to join the BSGE scheme for a number of reasons but at Endo UK we firmly believe that it is better to work together and share best practice, to learn from what we can and then spread that knowledge to all centres both specialist and generalist. We want to see the best care available to all women wherever they live and not just for those who live close to a particular centre.
I would also highlight that the BSGE accreditation scheme played a very major part in identifying additional funds for endometriosis treatment. Complex Gynaecology: Severe Endometriosis (E10/S/a) is now part of the Specialised Commissioning set-up in NHS England and this follows almost exactly the criteria of the BSGE scheme. This recognition should enable specific funding to be available to these centres to pull in all the resources they need at a time where cash for health is under such close scrutiny. It should also be noted that as part of the development of the NHS England contract it has been estimated that each Specialist Centre would be likely to conduct around 100 operations in complex gynaecology: severe endometriosis each year.
Hi, I know this post was from 10 years ago and the posters may not be on here anymore, but just in case I wanted to say thank you for the information - currently on my own undiagnosed journey and looking into what options are available.
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