Endometriosis UK
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Referral from GP - really need help with official protocol wording

Can anyone point me in the right direction to find a copy of the protocol in this helpful reply to my last desperate post. My GP is refusing an NHS referral even though I had endometriosis and rectovaginal thethering and nodules diagnosed and mismanaged during a hysterectomy. I am in constant pain 5 months on, dull during the day and chronic at night. My husband has demanded an appointment for me with a senior GP at my surgery this morning and is not leaving until we have their assurance of a referral. Any help appreciated.

'There is an official 'protocol' that GPs are supposed to follow - 'to the letter' !! - about referring women with sufficiently bad Endo to a BSGE clinic. It may take ages as a lot of women are suffering, there are not enough clinics to meet the demand, and yes ... the poor old NHS is being starved of cash, but, it is a requirement.

I really think your GP may well be at risk, if he doesn't smarten up his act.'

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Is the bottom bit your wording? I wouldn't say anything about the NHS being starved of cash and I would take out the GP bit at the bottom. If you want to say something about the GP, do it as a formal complaint, and stick to exactly what the problem is and don't make vague threats.

I would print out a copy of the NHS contract for severe endo to take with you, plus the details of the centre you want to be referred to. Go in assuming you're going to get the referral and simply say I was diagnosed with X, I've had this surgery, my pain is like this, I want to be referred here. If this is then questioned, refer to the NHS contract. If the referral is still refused, ask for the reason to be written on your notes, including a statement that you've asked for the referral and had it refused, then immediately ask to see the practice manager and tell them you want to make a formal complaint. My experience has been that doctors don't necessarily stick together when one is shown to be incompetent, if anything, once I've told other docs about it (even at the same practice) they've bent over backwards to be helpful. I'm still being seen at the same practice where one of the GP's told me back in 2015 that I didn't have endo because I didn't have the symptoms. All other staff at the practice that i now see are aware that he screwed up and have never tried to justify his failure or back him up.

I hope you get a good outcome. x.

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Hi Joreilly

The wording at the bottom is the reply from someone here that made me aware there must be some formal protocol. I really need a pointer the actual NHS contract. Is it on the endometriosis UK site or NHS site? I be looked and can't see anything. My husband and I are off at 11.00 am to see my doctor for one last attempt. My GP wrote a flimsy letter in case I wanted to take it to a private specialist, he describes my pain as colicky, so we already have an uphill struggle ahead of us this morning.

Thank you in advance.

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Oh sorry! I think this is what you're looking for

england.nhs.uk/commissionin...

Colicky, FFS.

But please don't assume it's an uphill struggle. The next GP I saw at my practice (after the one who told me I didn't have endo because I didn't have the symptoms) said straight away it's endo, you need a gynae referral. Even after I told her what the previous one had said, she just shook her head and said it's endo. It might not be difficult. Good luck.

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Thank you so much.

I found the link just now but wasn't sure. I am so tired today.

I think my surgery appear to have joined ranks over a verbal complaint I made about my former GP of 7 years. I was allowed to change GP to see her boss and he is the one who refers to her misdiagnosis of IBS and other misdiagnosed symptoms as fact. We are seeing him this morning. He is equally unenlightened on the subject of endometriosis and hadn't heard of BSGE clinic before I mentioned it to him. He feels the hysterectomy by a general Gynae is job done and my pains are either healing pains or IBS related. He's prescribed a diabetic drug to cool me down at night in response to my concerns that no one is helping my menopause symptoms insomnia, night sweats and rage. I'm headed off every time I try to see another lovely senior GP there who is more likely to refer me and I have been told the practice manager is either away or in a meeting all day on several occasions. I am sure there is a flag on my name.

We are trying to be positive and look forward by getting a positive referral. But this is our last attempt before I look backwards and start a case for past misconduct.

Thank you for your help.

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Make sure you go in there and say you have endometriosis not had as they are referring to, make them aware that just because you have had surgery dose not mean the endometriosis has gone away, make a point of there is no cure for endometriosis which they probably don't even know that unless you make them aware of it. Good luck

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Thank you both so much for your replies this morning.

I believe we have been understood. I was able to take along the NHS report and mentioned that surgery was not a cure and I should be offered the same referral as everyone else with suspected or confirmed endometriosis. I am expecting my GP to make a referral.

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