Wait time after GP referral (NHS)

[Waitinggame42023]

Hi there, just looking for some wisdom and advice really from anyone who's been through. Going thtough or about to go through NHS-funded IVF.

DH and I have been TTC for 4.5 years. We had initial tests through GP (bloods, swabs and semen analysis plus ultrasound coming up in two weeks), all apparently 'fine' so far.

My GP messaged to advise she's processed our referral, she's been helpful so far but she couldn't answer any of my questions around possible wait times, timescales, what happens next etc.

Would anyone be happy to share their stories of NHS-funded IVF? We know that different areas vary hugely with wait times for the initial appointment, which is very concerning for us as I'm already 35. Would just be good to get an idea, feel like our lives have been on hold so long now 😕.

We're in the York area atm.

Bump- anyone happy to share their journeys?

@Waitinggame42023 hi, I’m not in York so can’t advise on their timelines but if you ring the appointment line of the clinic or hospital you’ve been referred to you can ask them where they are on the waiting list and they can advise roughly when you should be seen.

The waiting and feeling like everything is on hold is so awful, hopefully the list won’t be too long in your area!

Thanks for taking the time to reply @180monkeys 😊

I rang the hospital today and it turns out they haven't received my referral yet, so I rang the GP and it turns out it hasn't actually been sent. I'm now waiting for a phone call from the hospital consultant's secretary today, but I'm not holding out much hope.

They mentioned the consultant's name and a quick look-up I've done suggests a 40 week wait just for the initial appointment, I'll be 36 by then. So likely closer to 37 before even starting treatment.

In light of this, DH and I will have a discussion tonight about whether we still want to proceed. With the fact we only get one cycle, we know our chances of success would be slim anyway, a crazy wait time is only going to further reduce our chances. So thinking it might just be better for us to call time on having a family now and spend this time coming to terms with it, rather than going through 2 years of waiting and treatment first.

It feels like our lives have been on hold for nearly 5 years already; jobs, houses, holidays. To think that limbo will continue for so much longer whilst we watch our chances dwindle, is awful.

@Waitinggame42023 the waiting is horrible 😔my referral from GP to the hospital Gynae was 8 months, we had our appointment and they requested OH to have a repeat SA done then couldn't get another follow up appointment for another 3 months. After that though things have moved pretty quick regards to IVF referral, our referral was sent in November and I'm due to start my first cycle in the next few weeks, would of been sooner but the clinic shut down over Christmas. I'm Manchester based x

Thanks for replying @waitingforourmiracle , that's so exciting, and I'll keep my fingers crossed for you!

I think if we knew we'd go straight to treatment after the 40 week wait then that would be more reassuring, but no one (and no accessible resource for our area) clearly outlines their process.

We'd even have considered paying for a private consultation/additional tests to skip that crazy wait and referred for NHS finding sooner, but no one can (or will) tell us if this would be accepted.

DH is very much set on doing IVF as a last chance, so in the future we can tell ourselves we tried everything we could.

IVF itself is one thing but knowing the wait is pushing us in to a less than 25% shot is another entirely.

Sending you baby dust @waitingforourmiracle

@Waitinggame42023 I’m sorry you haven’t had a great experience so far. I would definitely make sure you keep ringing to make sure you know when you’re actually one the list!

Have you had all your investigations done yet? We did these privately whilst we waited on the initial NHS appointment (SA was done on NHS but no waiting list for it) but it meant that we had all our tests done at the first consultation and he was happy to put us straight on the treatment waiting list rather than have to do the tests then wait on a review appointment to look at results/wait on tests and then go on the treatment wait list. I know it isn’t an option for everyone but it was a lot cheaper than paying for private IVF and sped up the process a bit.

fingers crossed the consultants secretary will contact you today

@Waitinggame42023 sorry I just seen your recent post which sort of covers what I had said. A lot of private consultants work in the NHS also so it might be easier to ask them at their private clinic if they will accept the test for NHS.

our referral was actually done by a private consultant rather than our GP and it didn’t cause any issues

Thanks @180monkeys, the reason we're worried about them not accepting an 'IVF' treatment funding referral from private, is because CCG's policy states that prior private treatment makes you inelligible for NHS IVF. I've also read some stories on here from people who's referral from private was just not accepted by NHS.

The NHS consultant the my GP is meant to be referring me to no longer does private unfortunately (I learnt this from another Mumsnet thread from 2022!).

The two closest IVF clinics to us are both private and NHS, but neither technically falls within our specific 'CCG' area, so advice from them re. referrals and funding may not apply to us.

So far I've had day 3-5 bloods, 21 day progesterone bloods, swabs, and am booked for a pelvic ultrasound in 2 weeks- DH has had SA.

I'm not sure what other tests they'd want (possibly HyCoSy, AMH blood test?), but I'd also worry about paying privately for those and then the NHS still insisting on repeating. Or the wait being so long that the results are void and will need to be repeated anyway.

@Waitinggame42023 that’s so frustrating that it’s so hard to even get the information to make a decision on private tests or not.

the only test that we had that you haven’t was the AMH blood test. We had that done privately and the NHS accepted it but I’m sure some hospitals might be different. We are also MFI so I’m not sure if they were possibly more lenient with allowing my tests due to that.

Thank you @180monkeys, it's good to know they accepted your tests.

You've nailed it there, it's impossible to make a decision about what to do when they're so cryptic with everything.

Based on our most recent test results, I think we'll be classed as 'unexplained'

No one rung me back today, I'm hoping they do tomorrow though so I can ask if they'd accept private tests. I'm not holding my breath though.

Seems DH is still keen to continue. I told him such a long wait time is just another year (at minimum) of being 'on hold'- not applying for new jobs, not booking a holiday just in case an appointment comes up, not moving in case it messes up the process.

Maybe in a few months he'll see where I'm coming from.

Hi,

I have been in a similar situation recently. My partner and I have been ttc for 1.5 years. At the year mark we paid privately for tests because I thought the NHS wait list was going to be too long. We had tests and they diagnosed me with PCOS and recommended a course of letrozole however the costs of scans etc were quite expensive.

We thought there was no harm in trying NHS and see how long the wait times were. Our GP referred us in Aug and we had our first consultation appointment in November (we delayed our tests by 2 months for other reasons). The clinic would not accept our private tests because they wanted to check things themselves. We have had our repeated tests and they also want to do a HYCOSY which we didn't have privately. It's taking a little longer than private but not as long as we expected, I'm not sure what the wait time would be if we need IUI and IVF but my point is of you go down the private route, consider that you might need the tests again on the NHS.

Sending you lots of luck whichever route you take

Hi there, I know this is an old message but hoping you will see it and be happy to respond :) I have done the same thing, and paid for tests privately, hoping that the first consultant appointment would just be easy, and it was, they said they are referring me back to GP and will apply for funding. What happened for you in terms of next steps? Did you have forms to fill out, was something sent to GP etc.? Thank you!

@She1992 hi, that’s great you had your consultant appointment and it went well! I am in Northern Ireland so I can’t really help from here as we didn’t have to apply to funding the way it seems to be in England we were just told we were added to the treatment list and would be contacted when we were at the top but fingers crossed for you it won’t be too much of a wait for you from here!

we actually had our first round already which unfortunately was unsuccessful but we were very lucky to get 5 frozen embryos and got a letter today to say we are top of the list now for our frozen transfer

Thanks so much for coming back to me! Oh that's great that you don't need funding in Ireland!! Makes it that little bit quicker! Hoping it doesn't take too long for me to be contacted but we will see! Slightly strange that the hospital referred me back to GP now as I would have thought the Consultant/Hospital would deal with moving forwards. I am so sorry to hear it didn't work but happy to hear about the frozen embroyos - I do hear a lot of times that the first IVF is more common to not work but then the 2nd time (especially with frozen) can be a lot more positive! I hope this is the case for you, and wishing you all the luck!! Infertility is such a hard journey, but we will get there :)

@She1992 fingers crossed for you! Did they tell you any rough timescales or anything? We were really lucky that the NHS waitlists in Belfast are short atm. But yes we didn’t see our GP about anything once we had been to the hospital but hopefully someone in your health trust will be able to advise better!

thank you! It was really disappointing but just have to be happy for our frozen ones and fingers crossed it will work this time around 🤞🏼 I don’t really know the process for a FET so will be interesting to see what our plan will be!

Thank you!! No not really, I did ask for a time frame but they said it really does depend on how many referrals are going through. I hope that perhaps we will recieve a letter confirming next steps or something, as I would hate to have to wait for another consultant appointment (took around 5 months). I have booked in a doctors appointment in a few weeks so will hopefully be able to get some answers then! Do you know how long your wait could be to do the next round? Hopefully being on the top of the list now won't be too long before you can get started 🤞

@She1992 hopefully you will get more information soon, the waiting really is the hardest part. Once we were having our treatment I actually felt really positive that we were taking steps to work towards our end goal.

I need to ring tomorrow to accept the treatment offer and am hoping they will give me more info then but last time we were top of the list it all moved very quickly I think we started our injections a couple of weeks later but obviously it depends on cycles too. We are also meant to go on holiday in the next couple of weeks so not sure if that will happen now either!

Yes definitely, I can imagine once you get properly started it's very exciting and positive! Oh that's fab, hopefully a nice holiday and frozen transfer coming up around the same sort of time will be ideal and positive! I am really excited for you and will be great if you could keep in touch and let me know how it all goes! 😀

Hey - how are things?

Hi there! I thought I would get in touch as I am also in the system in York! How are you getting on with things?

Hi there! I am also in the York area and in a very similar situation. We were referred by the GP in June this year and we have an appointment at York hospital this December to see a fertility specialist. They did initially say 50 weeks but this is obviously much shorter. How are you getting on!? Any updates at all?

Hi all, I'm so sorry I haven't revisted this thread, I think I've had message notifications turned off.
It's now just over a year on since I sent that first message, a couple of weeks after (late Jan) I found out I was pregnant! It was such a shock to conceive naturally after nearly 5 years of nothing, I think I did about 16 tests in the end and we spent a fortune on private scans.

Our baby son was born in September and I can't put in to words how lucky I feel. I really hope you've had some positive updates. @OliveTurtle this might help to give an idea of timescales as the clinic still processed us through the wait list;
When I notified my GP surgery that I was pregnant in early Feb, I asked if I/they should let the IVF clinic I'd been referred to know, they gently suggested not. I got a text message in around June/July from Leeds NHS Trust with a link asking me to fill in some info and basically checking if I still needed the referral. I selected 'no'.

But I then got a call directly from the clinic the day I had a consultant appointment to book my induction (so mid September), saying they were ready to start our treatment and book our first appointment. I obviously told them I was very pregnant already! The man on the phone said they'd ring the next on the list. So if we hadn't had been so lucky to conceive without help, we'd have started treatment (as in initial appointment) around late Sept, early Oct.

Thank you everyone for your support on this thread when I needed it. I hope this thread is helpful to anyone reading, and I'm sending good luck to anyone out there hoping for their beautiful baby xx