Referred to a different hospital! Don't know what to do?! Please help :(

[always_asleep]

I've just received a call from N&N Hospital where I have been on the waitlist for surgery since June 2023 (after being told my case was urgent). I spoke to someone a couple of weeks ago and was told I would be booked in over November time and someone would call to confirm a date. I've just gotten a call from the hospital to ask me if I would go elsewhere (a private clinic in Birmingham - I'm in Norwich) for my laparoscopy and excision surgery.

The place is called "Optimised Care" and is in Bromsgrove, Birmingham. That is the only information I was given over the phone and of course that is a lot to take in so I asked to get back to them in a couple of days so I can get my head around it.

I can't find much about "Optimised Care" online, who the endo surgeon/gynaecologist is and whether they are part of BSGE.

My symptoms get worse and worse as time goes on and I was told if I choose not to take this private practice surgery and want to wait for N&N then I would be looking at another 8-10 months.

To say I'm upset would be an understatement, I just had a big cry for half an hour and now I need to get to making a decision and figure out where I'm going to be in the best hands. It's my first surgery and I'm very nervous and scared.

Any help, advice or knowledge/experience of optimised care would be really really appreciated <3

[Tangoandmax]

Hello lovely, I’m so sorry to hear this. They honestly do not understand how difficult the waiting is when your life is so heavily impacted by this terrible disease.

Having had a google, I cannot see them on the accredited BSGE centre list on the BSGE website. It looks like a private hospital with a limited offering, if I were you, the only way I would be agreeing to this is if the BSGE centre consultant/surgeon does surgery privately there. It’s absolutely not worth having an op quicker if not under the right people. If you go on the BSGE site you can check who are the accredited team (at current hospital) and cross check on circle health where they hold appointments. A lot do NHS and private.

If there is no connection at all, I’d make a complaint to PALS at your current hospital. Reiterate the need for the BSGE specialist, the impact of symptoms to your day to day life (include how this is taking a toll mentally)!and ask why you have been previously advised a booking would be made in November when that’s not the case. It sounds like they’re outsourcing to protect their turnaround times as they are supposed to see/treat people in a certain timeframe. You have absolutely every right to say no (especially if the alternate hospital is not of BSGE status) I’m not sure on severity of endo or symptoms but the amount I read of general gynes missing all sorts, it’s not worth going through it without the assurance/confidence that an experienced surgeon is doing it.

You’ve unfortunately really got to fight them, please make sure you do if it’s not something you are happy/comfortable with xx

[Tangoandmax in reply to Tangoandmax]

I double checked, I can’t see that either surgeon listed works privately. Therefore, I assume it would be a general gyne carrying out the operation at Optimised Care x

[always_asleep in reply to Tangoandmax]

Wow, thank you so much for taking the time to reply to me. You've reinforced everything I was thinking and I feel a bit more empowered to continue fighting my corner, I'm going to recontact them on Monday and ask for much more detailed information from them about why they are sending me there and who it is they are sending me to.

You're exaclty right in the sense that I want this done properly and not to potentially have things missed or go wrong by someone who isn't a specialist (especially considering I have some bowel involvment seen on MRI as well as some supected bladder involvment after waiting for so long)

I truly really appreciate your help - my gut feeling is to decline and ask for a referral somewhere with a BSGE surgeon, I'm happy to go elsewhere but I want to make sure I'm in the best hands <3

[Tangoandmax in reply to always_asleep]

That would absolutely be my approach too. I find it so frustrating that they think they’re doing you a favour by offering when all it really does is add to your stress. Your feelings are completely valid, this surgery is a massive deal - they may be common but as someone who just had their first lap I can’t imagine getting mentally prepared/dealing with having to have a significant surgery for them to make a sudden change like this.

Absolutely ask the questions, I think it’s very fair of you to suggest a BSGE alternative instead - you aren’t saying no and showing you’re willing to work with them. Hopefully they’ll see that and find somewhere which can get you in soon. I had a similar remark flagged on my MRI, which was why I was referred to a BSGE centre as my general gyne stated they weren’t best equipped to handle the surgery, you’re right to ensure you’re treatment is carried out by the best people.

Just don’t be afraid to make a complaint if needed. I honestly wouldn’t be where I am now without doing so!

I hope the call goes well! Xx

[MrsPaddingtonBear]

Hello

Ok so firstly take a deep breath. Now, the hospital have advised you your treatment is urgent, they have asked if you would like to go elsewhere to get the help you need asap. The distance is a pain, it’s not like it’s just the neighbouring town or city. Get yourself a cup of tea, sit down with a piece of paper and write down all the reasons for and against going. Then look at them, try to look at the list objectively and calmly ( I know that’s hard). Seeing the facts in front of you can make things clearer and plainer to deal with. With the name of the hospital and surgeons name you should be able to find some information online about them. Good luck all will work out in the end, you will be fine.

[Giraffegreen]

Hi, I'm sorry this is happening. I have a question Norwich is a BSGE centre, if you waited would you actually be seen by one of the endometriosis specialists? It's definitley worth advocating for yourself to be seen by the right people. This might be something to keep in mind when making a decision so that you can get the best possible care.

[MaggieSylvie]

It looks like N & N have found a way to bring your surgery forward, and perhaps it is a good move. If it was me, I would be worried by the distance, but if you have someone to go with you (drive possibly) and you can afford the fee, I would take the opportunity. Go online and see if there is anything that worries you about the clinic, but if N & N have referred you and you trust them, then do it. You know you need the surgery. Good luck and hope this is an end to your suffering.

[Peptink]

So sorry you are going through all this pain. IMO, I would take the surgery at the new hospital. You’ve waited so long and the relief you could get is the main priority. If you get the surgery in November, let us know how it goes. My daughter has Stage 4 Endometriosis and has had an ostomy and now has an ileostomy. If you can avoid that it would be the best. Good luck!

[PrettyRainbows]

OMG!! The exact same thing has happend to me & I'm also waiting to have it 'urgently' at the N&N I've been on the list since last October & was told in April this year it would be December. Why is this happening to us!

I declined & the most annoying thing I was asked this about 2 months ago if I wanted to have it there in which I also declined 🙄 I couldn't see any reference either to them having endo specialists & I don't not want to be having a long car journey home after complex surgery !

[always_asleep in reply to PrettyRainbows]

Sorry I’ve only just seen your reply, thanks so much for sharing this with me! It’s crazy isn’t it . And I’m sorry you’re also going through this I still haven’t made a full decision on what to do, so stuck as I’m not sure whether to have it at this other place or have to wait even longer. Have you had any updates from them yourself? X

[PrettyRainbows in reply to always_asleep]

After I recieved this phone call, I phoned the following day to ask where I am on the list again (It was somebody different I spoke to) they advised another couple of months still so hopefully still on track for December. May pay you to do the same thing & see what they say to you!x

[lilyteru]

Hi Both  always_asleep and  PrettyRainbows . I feel sick reading both of your experiences. I just had my appointment with Mr S at the N&N last week, 1st Feb 2024. I wont go into the all here but like you both I have been suffering for 7 years. I was so happy to finally be seen at the N&N after a 14 month wait since the referral from my GP. Mr S told me he will put me on the wait list now for my laparoscopy surgery. I'll have a pelvic scan first. I told him I am currently off work since October 2024 and and my whole life is crumbling. I cant wait too long for this surgery and he assured me the waitlist isnt long, although he couldnt give me an answer. However reading both our your stories has we really worried, youve been waiting over a year and then told to go somewhere else!? As far as I am aware there is only Mr S and Mr P-S working there? Did you see one of them? How long were you initially told the wait time would be for your surgery?

thanks in advance

[PrettyRainbows in reply to lilyteru]

Hey! Just seen your reply. I ended up having my lap on the 30th Jan, a joint procedure with Mr Simpson & Prosser Snelling. The date was rescheduled 3 times and overall, I was waiting 15 months for my 'urgent' procedure. I was told the wait would be 15-18 months for urgent, and 18-24 months for non urgent but that was back In 2023.The communication is very poor during the waiting period In my experience, but Mr Simpsons' care was very good! Unfortunately, I've got to have another surgery in 6 months time however

Good luck! Feel free to message if you want to talk ♡