Referral Question - I should know this, b... - Endometriosis UK

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Referral Question - I should know this, but...

Bettybloo profile image

Good morning, lovely people.

I've just spoken to the GP surgery to try to get a referral to a BSGE centre, having already had a diagnosis and surgery for deep endo. I don't currently have one of these centres in my notes as I went through insurance at previous job and had surgery privately.

The GP said they couldn't choose what sort of centre to send me to but they would refer me to local gynae and that the gynae service would send me wherever was appropriate. My understanding was that it is possible to refer directly to BSGE (for known or suspected severe endo) so I said this, but GP was insistent that it wasn't possible and that general gynae would direct me as appropriate.

If the GP is correct, do I need to do anything to ensure that I get seen by the right people? I accept that it will be a very long wait, so want to make sure I don't waste an appointment seeing the wrong people.

Thank you.

14 Replies

In my hospital, the route to the BSGE centre is via the general gynecologist. I have very large endometriomas and still was only able to get a referral to general gynecology. I think your GP is correct but maybe someone knows better :)

Oh thank you - I may well have misinterpreted the guidelines, so this is helpful!

Hi there, there is no BSGE centre in my area but I did manage to get my Gp to refer me to one outside our area last year (she did have to check with a more senior GP that she could do this but then it went through).

I too had had my previous surgery privately so had an endo diagnosis. Once the referral had been made I spoke to the consultants secretary and sent an email with my full history in to make sure I wasn’t going to end up in the wrong place - so maybe even if you do end up with a general referral you could do this to increase the chances of getting to the right place first time? Hope that helps, good luck xx

Bettybloo profile image
Bettybloo in reply to Pacman12

Interesting - I wonder if there are just different referral routes in different areas. I will try your suggestion of speaking to the secretary when something eventually comes through - thank you. Really appreciate the advice & support on here :)

HiLook at the NICE guidelines pretty sure GP can refer you.

Having had a hysterectomy under a BSGE registered gynaecologist, I’ve since had GP refer to a different centre, no issues at all. There are reasons for this. Centres aren’t necessarily all they are cracked up to be.

Good luck

Hi there - thanks for your reply. I had a (rather brief) look at the NICE guidelines a while back and seem to remember them saying that you should be referred to a specialist centre, but not specifying whether that was directly or via general gynae. I guess it may come down to which area you are in, as per Lindle's point.Thank you :)

I’m in England, GP’s can do much more than may happen. My first referral to a centre was initial gynae, second was GP. If you request your notes from the private hospital this may help your referral, they can’t charge for anything that’s electronic. Your previous consultant can also refer you, or if you were happy with them and do NHS add you to their list.

🤞 for you 🙂

Referral pathways vary depending on what part of the UK you are in - are you in England?

Bettybloo profile image
Bettybloo in reply to Lindle

Thank you Lindle - that's useful info. I am in England.

Lindle profile image
Lindle in reply to Bettybloo

The NICE guideline doesn't help with this as they give recommendations and aren't involved in setting standards or prescribing services.

So as you are in England the NHS England treatment specification applies for the treatment of severe endo in tertiary endo centres. This is actually a requirement set in law under the 2012 Health and Social Care Act. The link is below.

england.nhs.uk/wp-content/u...

The following sections apply. Since you have a history of known severe endo your GP refers you. I would copy the guideline and give them a copy for future use as well as insisting it is followed.

3.2 Service description/care pathway

3.2.1 Summary of the service provided is explained in the following steps:

Referral from Primary or secondary care (including detailed clinical information,

investigation results and laparoscopic images/video)

3.2.2 Referral

Patients with known severe disease, which has not been adequately treated or has recurred, are likely to be referred by primary care clinicians. Gynaecologists in secondary care, who identify severe deeply infiltrating endometriosis or recto-vaginal disease at laparoscopy, or open surgery, will refer patients from secondary care to an Endometriosis centre. Laparoscopic images and or video, of suitable quality and format will be included with the referral wherever they are available as this may prevent the need for repeat laparoscopic pelvic survey after referral.

3.4 Any acceptance and exclusion criteria and thresholds

The service will accept referrals from GPs and secondary care clinicians in Gynaecology, Colorectal surgery and Urology. The service will also accept referrals from other providers, particularly when the referring service is not accredited to undertake the clinical care the patient requires. The service will accept referrals for patients who meet one of the following criteria:

Women with a diagnosis of severe endometriosis

Non-severe endometriosis refractory to treatment

It is also covered by the RCOG Standards for Gynaecology Care, that covers the whole of the UK. Specialised treatment in centres is covered at section 3.

3.1.2 DIRECT REFERRAL TO

SPECIALIST GYNAECOLOGY

SERVICES

With conditions where there is a low probability

of successful management in general gynaecology

services, it may be appropriate for the primary

referring clinician to refer the woman directly to

specialist gynaecological services

rcog.org.uk/globalassets/do...

I run a UK endo guidance group if you would like to join. We can't give links but feel free to pm me.

Hi,

Just wanted to post and say I went to my bgse via my gynae consultant I am now post surgery all in all took about two yrs.

Good luck x

Bettybloo profile image
Bettybloo in reply to kelsbels88

Seems like it can go either way then! I'm sure I'll get something through eventually! Thanks so much for your good wishes - needed them today :)

kelsbels88 profile image
kelsbels88 in reply to Bettybloo

You’re very welcome it may seem far away but there is an end to the tunnel keep your chin up 😉 xx

The latest: I contacted the GP again armed with the info about the NHS service spec thanks to Lindle. Couldn't get through to the same GP (they're phone only at the moment) but this one also said that they couldn't refer to the specialist centre, but that general gynae would triage it as they saw fit. Had a call from the hospital yesterday (totally unexpected, I just assumed it would be about a year given the likely backlog) to book me in for an appointment with general gynae. I mentioned the referral pathway for known severe cases and the booking person said that it had been triaged to general gynae, so I politely asked why the specification hadn't been followed and they said they would check the triage decision with the consultant. Low and behold had another call today to book in for an appointment with the specialist centre.

So pleased as apart from anything else I don't want to waste an appointment that could go to someone else by having an extra one myself.

Thank you all for your help - a but of patience but also persistence with the regulations certainly seems to have paid off. Hope this is useful to someone else!

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