NICE guidelines for referrals

[Luci20]

Hi everyone,

I found out recently that NICE (National Institute for Health and Care Excellence) have guidelines for GP’s to follow for endometriosis which were published in September 2017. I was unaware of these until recently and since these guidelines were published, I was still going to my GP with them dismissing me when they should have referred me straight to an endometriosis specialist due to my symptoms. I have finally last month asked to be referred to the endometriosis specialist as I have always suspected my endometriosis has spread to my bowels and possibly to my bladder. I wish I had known about the guidelines sooner as I would have insisted a long time ago for my GP to refer me to an endometriosis specialist.

These are the guidelines;

1.4 Referral for women with suspected or confirmed endometriosis

1.4.1 Consider referring women to a gynaecology service for an ultrasound or gynaecology opinion if:

they have severe, persistent or recurrent symptoms of endometriosis

they have pelvic signs of endometriosis or

initial management is not effective, not tolerated or is contraindicated.

1.4.2 Refer women to a specialist endometriosis service (endometriosis centre) if they have suspected or confirmed deep endometriosis involving the bowel, bladder or ureter.

For the full guidelines, the link is;

nice.org.uk/guidance/ng73/c...

[newstart2020]

The guidelines are only guidelines and they don't apply to Northern Ireland really. Any referral to NHS England from HSC Northern Ireland requires firstly the approval of a NI gyney consultant and secondly approval from the Health Board you are in. There are thousands of women with Stage IV endo living here in NI, and I have not come across a single one with a straightforward case who has successfully managed to get to England for NHS surgery. I believe there was one lady who might have managed to, but as far as I know, her case was exceptional. My case isn't exceptional, the endo is just ruining my life, the surgeons here aren't qualified to operate on it, but there you have it for the devolved health and social care system that we have in the UK. I could go to Europe to one of the brilliant surgeons out there in Romania or France, and use the Cross Border Healthcare scheme via my rights as an EU citizen (women have successfully done this to get back some money), but I'm too terrified to go abroad and I no longer have the mental energy to fight. Sorry for the misery, I just keep coming across 'NICE guidelines' and they mean actually nothing in reality in Northern Ireland for my treatment options.

[Luci20 in reply to newstart2020]

I didn’t know they didn’t apply to Northern Ireland! That’s really bad. I know they are only guidelines but hopefully they may help someone get a referral as they have helped me. A few months ago, I didn’t even know there were endometriosis specialists and I thought there were only the gynaecologists dealing with this. I hope things improve for Northern Ireland. You should try writing to your local MP if you haven’t done so already.

[Lucy_Goosey in reply to newstart2020]

Why is NI different to these? I need referred to eng and heard enough stories abiut the 'slecialist' who wont refer. My parents dont believe me and say ill get referred if its bad enough. I didnt know though NICE guidelines didnt get upheld in NI.

[newstart2020 in reply to Lucy_Goosey]

It's not that the guidelines don't get upheld, it's just that it's dependent entirely on a local consultant recommending the transfer to NHS England in the first place, and the local consultant has to make a case to the health board. We all know how hard this disease is to pin down, how consultants differ in their skill sets, knowledge and general approach... And sometimes they think they can do your surgery themselves, even though the NICE guidelines state that Stage IV with RV complications means we should be referred to a BSGE centre. Northern Ireland has no BSGE centres, neither does the south of Ireland. And a BSGE surgeon doesn't always mean an excellent surgeon, you still have to research them. It's different in England, you can go to a consultant privately, get them to request that you get referred to a BSGE centre out of area if need be, and it's not as complicated to get. The stumbling blocks are it seems the huge NHS waiting lists and dwindling numbers of excellent endo specialist surgeons who are still NHS (usually as well as private). Anyway, there are better-informed women than me about, (and less grumpy women than me too), to get advice off. I had heard about the NICE guidelines and got all hopeful at one point, only to see my hopes dashed. Unless I move to England to live, in which case I'd be entitled to join the NHS waiting list.

[newstart2020 in reply to newstart2020]

I'd say if you live in NI and aren't planning to move any time soon, start saving money, and if you have the stamina for it, look to spend £4k in Romania or (more in) France or somewhere with a proven international endo specialist and go there for surgery if you are in NI, unless you have £7-10k to spare for one of the surgeons in England. If you go the Europe route, contact the Cross Border Healthcare scheme and ask what their process is for getting some of the ££ back that you pay upfront for a European surgery. But in the first instance, I'd say go to England to get an initial assessment done (£3-400) by one of the good endo specialists, and get an MRI scan done (£3-600) if they recommend it. (Also some brilliant work being done in Romania on MRI scans, there's a specialist with a state of the art machine).

[Tallulah182 Moderator]

Hi Luci20,

The nice guidelines and other helpful endometriosis info can be found on the endometriosis UK website also:

endometriosis-uk.org/Nice

Best wishes,

Louise, endoUK Moderator

[newstart2020 in reply to Tallulah182]

Unfortunately there isn't really anything there on the site to help women with Stage IV RV endo in Northern Ireland. It's great to read information about the disease itself on your website (heaven knows there is a terrifying amount of misinformation about it out there), but hopefully you will put some info together at some point about what on earth women in NI can do to help themselves get rid of this terrible disease.