Caroline45

[Caroline45]

Hi! I have stage 4 endometriosis and am wondering if it is possible to be referred on the NHS to see a consultant in England. I am particularly interested in Dr Edi-Osagie. I desperately want to find the best possible surgeon as soon as possible and have lost all faith in my own surgeon. I need colorectal surgery. If anyone has any experience of this , I would be really grateful for information. Also, does anyone know if there is any independent rating system for individual centres of excellence or for individual surgeons. I really want to make an informed decision.

Many thanks,

Caroline45

[katie1006]

Where are you writing from Caroline45?

[Caroline45 in reply to katie1006]

Hi Katie, I'm writing from Edinburgh. I know there is a centre of excellence there but I don't know much about it.

[MariBiscuits in reply to Caroline45]

Ahh I just noticed this. As you are in Scotland unfortunately Patient Choice doesn't apply, however I do know some people in Scotland who have been able to get cross border treatment. Unfortunately it's not straightforward and works differently depending on where you are (I'm in Wales where we have a similar problem), but I will ask someone I know who recently did it and if they have any suggestions for you.

[MariBiscuits]

Do you live in England? If so, Patient Choices gives you the right to request a referral to a consultant led team of your choice. However, I do know that the specialist you mentioned is very much in demand, and some people who recently requested referrals were told someone else from his team would be doing their surgery, as they are reserving him for severe cases. Obviously I have no idea if that would apply in your case, but that is something you could clarify with them.

nhs.uk/choiceintheNHS/Yourc...

I believe the rules here restrict recommending/mentioning specialists by name for legal reasons, so I can't really go into much detail about him, but I think you are definitely doing the right thing by researching reputable specialists.

[Caroline45]

Thank you so much for replying. I would be really, really grateful if you could ask the person you know who did it because I'm desperate. I've been told by a couple of consultants that my endometriosis is about as bad as it gets. Once again, thank you so much for replying

[MariBiscuits in reply to Caroline45]

Have sent you a message (you can access your inbox in the drop-down menu under your name at the top of the page).

[Sunflower846]

I had treatment in manchester and im from edinburgh and this was on the nhs, my doc agreed as i had received poor care here. Speak to ur gp and see what they say. any questions message me. x

[Caroline45 in reply to Sunflower846]

Thanks so much for getting back to me. I'm having problems submitting replies on this website,but I'll try sending this to see if it works. Fingers crossed.

[Caroline45]

That seems to have worked this time, so here goes. I'm actually a very desperate mum, trying to help my very sick daughter who has had severe stage 4 endo for six years .She has already had three laparoscopies and after the most recent one, which was last week, we started to do our own research online because we both had a gut feeling that her consultant wasn't very good, even though he is the lead consultant in our area, and the most senior. What we discovered has shocked us both. She has been on Zoladex nearly five years and at no point did he inform her of excision surgery as an alternative to ablation, nor was she not told about a centre of excellence in Edinburgh. She should have been treated there from the outset because her case is complex, needing a colorectal surgeon.

We paid to see someone privately a few days ago and says he will do excision surgery on the NHS, at the centre in Edinburgh. But we have since discovered that he works alongside her current consultant , as part of a small team at the Royal. She deeply distrusts her consultant now and is very concerned that the two are colleagues.

She has just graduated and is desperate to move on with her life but has had to turn down a job because she is so unwell. She desperately wants to find the best possible excision specialist and would be more than happy to travel if it would be possible to get cross border funding for England.

Any advice would be so very gratefully appreciated.many thanks again for replying

Caroline