IVF at Guy's & St. Thomas' & general process/timeline

[Lill02]

Hi all,

This is my first ever post, but I've been following for a while. :)

After having all the usual tests, including a hycosy and hysteroscopy, we were diagnosed with unexplained infertility a while ago. We have now finally waited long enough to be eligible for IVF on the NHS. We've got an appointment back at Guy's & St. Thomas' tomorrow (we had to see the GP and ask to be referred back as we've now waited the required time frame).
I'm not 100% sure what will happen tomorrow, but I'm basically hoping they will agree we've waited the required time and suggest we get the ball rolling for IVF, i.e. fill in our funding application, etc. I'm really hoping this will happen, I can't face being sent away again after we've waited so long...
What have your experiences been? Does that sound like realistic next steps? Has anyone been at Guy's & St. Thomas' and can share their timeline?

Thank you!

@Etonmess20 yes we'd previously had some investigations last year (including internal scan and husbands SA) but they just wanted more recent.

I believe once NHS funding agreed you can take it to any clinic that accepts NHS patients.

Best of luck xxx

Hi 🙋‍♀️

I am very worried that I am going to turn 40 soon . They might stop my treatment.

There’s been so many delays we waited almost 2 years. It will happen when it is meant to happen no point worrying about it.

@JadeS174 that makes sense, hopefully our investigations are recent enough that we won't need to repeat them but we'll see!
Thanks for the info about taking funding with you, I was initially thinking of doing that but think I'm leaning towards staying at guys for treatment now but we'll see once I've had an appointment with them.
Fingers crossed everything starts for you very soon, it does seem like they're getting back up & running again x

[quote Etonmess20]@Vparisi I've just reread your original message & you did say it was Wednesday sorry!! Ignore me!!
Is it a face to face or phone/zoom?
[/quote]
It is Zoom :) I am super excited. We thought there would be a much longer wait for NHS so we decided to do an initial consult with ABC this week that we booked last month but they turned me down as a patient post-scan due to complex medical history even though I am 28 yrs old, BMI 20 and had healthy uterus and good follicle count :( I am hoping the NHS will be kinder. My partner was always trying to stay positive and this really shocked him into reality a bit about the difficulty of the process. Does anyone have experience with NHS rejecting funding and for what reasons?

@Vparisi ah I bet you're excited!!
Oh gosh that's awful about ABC, especially if you have no other classic risk factors, that must have been really frightening for you both.
I'd hope that the NHS would take a different view than a private company such as ABC, really hopeful you get some good news.
I'm hopeful my appointment won't be too far away either though we may need to wait for a funding decision first so who knows

@Etonmess20 “Solid smiley, solid smiley” 😂😂 You know now that’s exactly what I’m going to be thinking the next time I get one! 🤣 As you say so nice to chat to people in the same boat, I don’t normally post that much on here but really glad I joined this thread!

Well what a difference an in person consultation makes in contrast to over the phone. I saw the same Dr but they were super nice this time! I had a scan, the Dr answered all of my many questions and reassured me about my age (36 in the summer), follicle count and lining. Such a relief!

I also had my AMH done, results next week along with repeat day 3 tests and am on the list to recheck my tubes when this is back up and running again but should hopefully be soon. So all in all, I feel like they’ve done everything they can now given the circumstances.

@notyetamumbuttrying I also remembered to ask about BMI. You have to be over 19 and under 30 so that’s good. 🥳

The only bad news that no one is going to want to hear I’m afraid is the backlog. I believe the waiting for funding is usually 6-8 weeks but the Dr said this is more like 3-4 months atm, then the wait to actually start IVF is around 6-8 months. So essentially it’s about a year in general but I don’t know if there’d be exceptions to this depending on circumstances. If there are we certainly wouldn’t qualify so we now have to think about whether to go private and if this would affect our one NHS round we’re currently allowed.

Good look on your Zoom consult @Vparisi I believe ABC have super strict criteria from what I’ve seen so I’m sure the NHS will be kinder. Let us know how it goes.

PS apologies for the essay! 🙈

@RiverRiot thank you so much for letting us know! Just told Dh and he said we'll go private. Thank god he's agreed! He was reluctant to give up the free treatment but no way can we wait another year! Thanks for asking about the bmi hun 😌 I still need to shift my lockdown weight anyway tho 😂 so glad to hear that all went well for you 🤗 so what were you told were the next steps? Wait for the funding to be approved?

@RiverRiot hopefully thinking of me doesn't put you off next time you see the solid smiley 🤣 it makes me laugh every time now too!
I'm not much of a poster either but feel like this group are actually all in a very similar boat at the same time which helps & it's good to talk, keeping it bottled up hasn't helped me so far!
I am so happy to hear you had a good experience & that you're moving in the right direction now, it's a shame you had to stamp your feet to get it but I bet you're glad you did now. It all sounds very reassuring too which I'm sure has helped put your mind at rest no end!
I'm not at all surprised to hear of additional delays if I'm honest, the only positive for us is that we'll have been TTC 3 years in October so we'll be so we'll be near enough at our CCG rules by then. After my hospital told me a year I had that in my head so 8 months is still better than that!

@Etonmess20 Phahaha!

Yeah I’m not surprised by the delays either but hopefully by the time October comes around they’ll have started catching up a bit for you.

@notyetamumbuttrying You’re totally welcome! Are you only entitled to the one round as well?
I just have a couple of month now til I reach the three year mark so can apply for funding then. The Dr said we could start the private process at the same time but we just have to double check if this affects our NHS round. Either way we are considering private too, I don’t really know how I’d cope with trying for over 4 years although I know some people have been trying for much longer than that and my heart truly goes out to them.

In the meantime it’s repeat bloods, HyCosy and results of my AMH then the ball’s in our court really as to whether to wait for NHS or go straight to private IVF. Both options feel quite daunting and I think it’ll be the most grown up decision I’ve ever made! Ha!

@RiverRiot have you looked at any clinics yet? I was always of the mind that I'd wait for the NHS round but now it's getting more likely we'll need IVF I'm in two minds about waiting. I think it's just the amount of money involved in private treatment that scares me 😬

@RiverRiot yep just the one round but that's three goes, as it's one fresh and two frozen. I think you've been very patient! 3 years is a very long time! I'm only 17 months and already going out my mind 😂 although I've calmed loads since getting the appointment date. How long until bloods and hycosy then?

@notyetamumbuttrying I think ours is the same. I’m just really hopeful that we’d be able to have a private round while waiting for NHS but I know in most cases this ‘forfeits’ some/all of the NHS entitlement. sigh

When is your appointment again, am I right in thinking it’s Feb sometime?
If/when you go private do you think you’ll stick with Guys or look at other options?

@Etonmess20 I think before IVF really solidified in my mind I was thinking Guys or Kings as they’re closest but have also been told Lister is good so will look into them too (I think they’re a bit more expensive though). Basically, I’m open to any and all recommendations atm so if anyone has any pls do fire them my way!

But yeah the cost is a bummer. From the research I’ve done I think you can expect around £5K minimum and that’s without the cost of drugs on top. And when you factor in around 30% success rate it gets even more depressing. But I guess we’ve got to do what we’ve got to do haven’t we.

@notyetamumbuttrying Oh and bloods this week and still waiting to hear about the Hycosy.

Hi everyone ! New to this! We were referred by Darenth Valley in Early November to Guys for IVF. Had my text in January and also my second email to complete what i think are the funding forms! I really hope the wait gets shorter ! About to start on an extension for the house and don’t want to go private! We’ve had private consultation with Harley street fertility but they’ve advised we would need fet and genetic testing as i’ve had a molar pregnancy ! so it’s upwards of 10 grand! Is great that you are updating each other on when appointments come through!

Hi @Welshpea welcome!!
I was also referred from Darent Valley just before Christmas!
Definitely feel your sentiment about not paying private, we moved house at the end of September & are just getting our garden done so could do without it too! Good luck with you extension, don't know about where you are but every other house on my street seems to have a skip in the garden at the mo!
Fingers crossed things are back up & running again & they start working through the backlog!

@RiverRiot I'd like this too. How would they know you went private unless you told them? I wonder if there's an agreement in place with private clinics or something?!
Yeah it's 22nd feb.
Already have a private appointment booked in for March now with care London. And it was only March as they want the amh result and second SA before they'd do a consultation.
Good you've got bloods soon then! Keep us posted with results and hycosy update.

For those ladies doing PGD, who are only just getting started. Have you asked about using your funding elsewhere? I know Oxford Fertility, Care Nottingham and CRGH in London also are able to take NHS patients, but this is not widely told to people. I have frozen embryos and I’m waiting for FET now, so I’m stuck where I am, had I known earlier I may have pushed to go elsewhere. Guy’s I believe are still the leaders results wise, but it’s a trade off in patience and lack of communication for the bonus % in success rates

@ThePurpleFairy - thanks for the tip. I believe our funding is only for Guys as they have the agreement with the NHS in Wales.

I have a friend who is an embryologist and she says they actually have all the kit in the clinic where she works which is on my way to work but the funding just isn’t in place.

That’s such a shame that you’re in that position and feeling that way about communication vs success rates.

Welcome @Welshpea!

Thanks for the update @ThePurpleFairy It’s such a shame about their communication, I would’ve hoped they’d be better now you’re further along in the process, that’s so frustrating!

@notyetamumbuttrying I don’t think they would know or ‘talk to each other’ but as far as I’m aware the first (and sometimes the 2nd and 3rd) round is often about trying to find out what medications/protocols work for you so you wouldn’t then be able to relay all you’ve learned without losing your funding.

Good luck for the 22nd, not long to go now, let us know how it goes!
It’d also be great to hear how your Care consult goes as well if you don’t mind?

@RiverRiot ah I see!
Thank you! So pleased it's feb, should whizz by now. Have the afternoon booked off for it. It's not until 430pm!
Yes will share how the care consultant goes too x

@RiverRiot

just saw your query around self funding and still being eligible for nhs. not sure which area you are in but i called guys and they told me over the phone that you can self fund once and still get your nhs as long as your self funded is unsuccessful. this is kent and medway ccg rules. But i’m sure if you call and tell them your area they will tell you.

@Etonmess20

I know ! everyone is getting work done to their houses. Gravesend area is where we are but i know Guys covers such a wide area ! that’s why there’s a back log . What annoyed me is kent and medway CCG has lots of approved clinics but didn’t even offer me a choice. CARE fertility tunbridge wells is one that is approved along with lots of others but they seem to send everyone to Guys which with covid makes the waiting lists crazy 😭

Thanks @Welshpea! They got back to me and said my CCG allows two private rounds before you lose your NHS round. I’m in London and was not expecting that at all so that’s a nice surprise!

@Etonmess20 Are you not allowed to move to a different if you want to? If they’re on the approved list anyway I don’t see why you wouldn’t be allowed a choice? The beaurocracy! 😫

So I got my AMH and AFC results back. Both good/normal for my age - not at all what I was led to believe from my first phone call based solely on my FSH. Feels like a weight has been lifted, I was pretty much a mess for two months worrying constantly about DOR. 😓 I still have to do another day 3 blood test so I’ll interested what it is next time, fingers crossed it’s better.

Good luck for your appointment on the 22nd @notyetamumbuttrying! Hoping it all goes well for you.

[quote Etonmess20]@Vparisi ah I bet you're excited!!
Oh gosh that's awful about ABC, especially if you have no other classic risk factors, that must have been really frightening for you both.
I'd hope that the NHS would take a different view than a private company such as ABC, really hopeful you get some good news.
I'm hopeful my appointment won't be too far away either though we may need to wait for a funding decision first so who knows [/quote]
Thanks @Etonmess20 , appreciate the kind words! My appt went well yesterday I think - they didn't have scans or anything to look at but based on no tubes he said he would put forward the request for funding and said at the end of the appt I should hear in 4-5 months as that is expected timeframe at the moment. Quite a long wait really!

@RiverRiot if I'm honest I'm not really sure how it all works!
Glad to hear you got some good news, I do get why they tell you a worst case scenario but surely it would have been helpful to do all tests before to give a complete picture?!

@Vparisi that is a long wait, especially just for the funding decision but I'm glad they're progressing it for you

I've had quite a week this week as my mum has had a serious accident so I've had to come back "up north" to take care of her horses & dogs (as well as my full time job WFH) while she recovers in hospital....it never rains but it pours eh?!

@Etonmess20 so sorry to hear about your mum. Hope you and she and the horses and dogs are holding up. That’s so much all at once.

We had a call from the ACU today offering us an appointment at the beginning of April. So a bit longer then originally promised but actually not so bad bearing everything in mind. I think we had the virtual genetics appointment in November.