private vs endo centre?

[Mcyizml2]

hi, I’m in the fortunate position of having private healthcare through work. I had likely adenosis and long standing deep infiltrating endometriosis identified through an MRI about 9 weeks ago. Initially I said no to surgery (because I was a hit shocked on the call and didn’t know anything about it), then realised a laporoscopy is the way to go to avoid further damage and have been waiting since.

I have very odd pain patterns - it’s not during my period, I have months entirely pain free and others where most of the month I’m in pain and taking stronger pain killers.

My question is this. When I went private I didn’t suspect I had this and randomly chose the person I saw. She leads the local womens hospital so I think I’m in safe hands for a laporoscopy, but should a colorectal surgeon be there for the first surgery? Could I end up having two surgeries because she takes a look to confirm then ropes one in. Is it better to be in an nhs specialist centre?

[Lindle]

It's not a matter of private versus NHS endo centre. It is a matter of private endo centre versus NHS endo centre. You mustn't be disadvantaged in any way going private.

Endo centres are there for a reason - it is so that the most advanced expertise required for the most complex of endo surgery is concentrated in hubs where they operate on complex cases regularly in order to minimise risks for patient safety. There are standards set by the BSGE for centres they accredit (private and NHS) and in England the requirement for surgery for severe endo to be done in centres of excellence is prescribed by the Health and Social Care Act 2012. The ESHRE guideline 'recommends that women with deep endometriosis are referred to a centre of expertise' (11.3f) and the NICE guideline recommends that those with deep endo are referred to a specialist endo centre (1.4.2). Note that the NICE guideline refers to this as endo affecting the bowel, bladder or ureter but this is incorrect as it was drawn from an incorrect reference - all deep endo and rectovaginal endo must be referred to a centre. ESHRE and NICE can only 'recommend' as they are not governing bodies but all doctors must follow their guidelines.

Unless your gynaecologist is part of an advanced multidisciplinary team working in a private endo centre or equivalent setting then she won't be qualified to do your surgery. She can't just take any colorectal surgeon to work with her, they also need to be part of the multidisciplinary team with specialist expertise in supporting endo surgeons at such complex surgeries. There needs to be two suitably qualified/trained/experienced lap surgeons plus colorectal and urology if the bladder/ureters are involved. The ureters are usually involved with deep rectovaginal endo. This is all very expensive and not all private insurance covers it.

There wouldn't be a routine diagnostic lap - you have already been diagnosed by the MRI. That will 'map' your pelvis so that the required team can carefully plan the excision. Strictly speaking there would be an initial lap if endometriomas are involved in which case they are drained and stripped out followed by 3 months of GnRH agonists (such as prostap - if the patient consents) followed by the main excision. But I don't think this happens in all cases. Some will just plan the one main surgery.

We do come across people having complex laps privately with individual lap surgeons sometimes with colorectal surgeons on hand, sometimes without, and many have lived to regret it. The responsible surgeons decline to do it and say you must go to a centre. It is all about patient safety and really the question has to be asked - if the NHS prescribes that complex endo surgery must be done in tertiary centres of excellence why risk a lower standard privately?

So you first need to decide on a private centre or a few and then discuss with your insurance to see if they cover them.

The private centres that are accredited by the BSGE are included on their list. There are are couple not on the list as they don't have to be as long as they follow the required standards.

Note: we know some centres are not performing as they should be that is a different discussion.

[Mcyizml2 in reply to Lindle]

Thank you so much for such a knowledgeable response! It could be fine, I think I just haven’t asked and should. Is it a call to the consultants PA or should I call the insurance company?

[Mcyizml2 in reply to Mcyizml2]

Am I asking if the private hospital is a registered specialist centre?

[Lindle in reply to Mcyizml2]

You wouldn't ask the insurer that as they are unlikely to know. The first thing I would do is look on the BSGE list of accredited centres and the second list below which is of centres that have applied but not yet got accreditation. Sorry, the link didn't come through above.

Also googling your surgeon might give some info you need. The basic formal level of training an advanced surgeon in a centre needs is called ALAP. Or they might be a sub specialist in Reproductive Medicine. But if they work in a specialist centre with a team working with severe endo we would expect them to say so in a profile.

bsge.org.uk/centre/

bsge.org.uk/bsge-provisiona...

Also these are the requirements to be accredited by the BSGE:

bsge.org.uk/requirements-to...

And the NHS England treatment spec for severe endo that they should be following as private teams.

england.nhs.uk/commissionin...

[Mcyizml2]

Thanks, it looks like my private MRI was reviewed by a specialist Center radiologist and I think this surgeon does work in an nhs specialist centre, but isn’t listed as one of specialists on the bcrg website (and obviously the private hospital isn’t listed). I’ll give this all a read and then drop her a note, super helpful thank you!

[Rocket14]

Hiya, I had bupa through work and you have to call them to get a award of treatment. I went private and have been treated so well, my consultant is one of the best and totally understands what us women go through.