NHS IVF waiting times

[Jellyfish6]

Hello, I'm wondering if anyone can help. My husband and I have been ttc for over a year and have been referred to the NHS for tests. We've been told the wait is 34 weeks just for the first consultation. If we find out that we do have a fertility problem, is there then another waiting list for IVF? I can perhaps wait the 34 weeks for the first appointment but not sure I can then wait again. I suppose we are weighing up whether to wait it out or save for private.

I can't find out anything from my GP or online, so if anyone has any experience of how long you wait after the initial consultation (if there is a problem) I'd be really grateful to know. We are in Leeds.

Many thanks.

Currently about the start an IVF cycle via NHS.

Had bloods, chlamydia swab and SA done by GP before referral. That took about 6 months. Referral took a while as I had to have repeat bloods a couple of times. Eventually got referred early Jan 2022.

First appointment at fertility clinic March 2022, arranged scan, more bloods and HSG which were done March/April time.

Second appointment at fertility clinic in May. Referred for IVF and picked clinic May. Heard from clinic and had AFC scan and consultant appointment in June.

If my case had been straight forward I imagine I would have started August.

As it happened, I had to get thyroid sorted and had an endocrinologist appointment that ended up being delayed by a month. Clinic needed copy of paperwork and I didn’t get that until end of September.

Consents done October. Protocol received November and starting down reg this month.

It’s taken me about a year, to get to this point, but I reckon from referral if I didn’t have endocrinologist app/ thyroid stuff would have been about 8 months. Lots of stuff happen at once followed by lots of waiting!

@Jellyfish6 i am in the same position as you waiting for the initial referral appointment that the gp has made to come through. Been waiting for nearly 8 weeks now. Because of my age and the fact the nhs would only allow me 1 round of ivf (if that) we decided to get tests done privately to at least find out what the issue/s were. Not sure if that helps you but for me I felt by having tests privately at least I was moving forward

@Lauralozzle thanks so much, that's useful to know. Seems like I've still got a bit of a wait to go. @LF82 we've been thinking maybe about getting private tests, like you say it helps to feel like you're moving forwards as at the moment I just feel I'm at the mercy of the waiting list!

@Jellyfish6 totally know that feeling! Good luck 🤞

@LF82 you too!!

I’m in Leeds, I can’t tell you about the wait for referral now because I was referred in June 2020 - had my first appointment Feb 2021 (but COVID massively delayed it) and I’m not sure I was actually referred in June, because I chased GP in sept and they said they’d send it through.
I had scans between March 2021 and June 2021 and could have had IVF straight away in July 2021 but I needed a polyp removing (they weren’t doing polyp removal due to COVID) can’t remember when this was done, but had further scan probably late Oct 2021 and needed further polyp removal which was done week before Xmas 2021. Went straight on ivf list after clear scan early Jan 2022 but I delayed it because I was feeling so overwhelmed with all operations and scans and wasn’t in the right place iykwim (I think I had 8 scans, 2 ops and numerous appointments in about 5 months).
I delayed 6 months to august 2022, nurse appointment for ivf early Sept stated meds sept, EC Oct, transfer nov. Unfortunately it failed, I’ve got my review appointment next week, if Xmas wasn’t in the way they would do FET on next period.

Leeds admin is terrible but once you have started it does feel like they want to rush you through, when I spoke to them in august they said there was no waiting list for ivf. I was also told there is now no waiting list for polyps because they thought I might have one when they did my scans for ivf 😭

The only clinic in Leeds is Care so unless you go to Manchester it would be the same clinic as NHS for your tests. Also it is Leeds policy if you do private ivf you forfeit your NHS round. The nhs round includes all FET which makes a big difference because they are £3-4k a go (I have 3 in the freezer) a lot of CCGs only cover the first transfer so this is quite good.

has the clinic said the wait is 34 weeks for initial consultation? If so this is even longer than I waited at peak of covid when it was shut and the move to Care was to reduce lists. I know there is no wait for ivf as of late sept because I was told when I was processed.
You May be quite quick if your scans are all clear, it is the time if they discover “issues” like my polyp that drag it out because it is scan, review, operation, new scan, further review…..
comparing to some clinics (inc private) on the ivf oct/nov board Leeds seems a lot quicker with appointments.

@NorthernDuckling this is exactly what I needed to know - thank you so much.

You mentioned forfeiting the NHS round, do they only offer 1 round? I know some places to up to 3.

And yes the 34 weeks is just for the initial consulation. If that is the only wait I can live with that, it's if there is then another waiting list for IVF but it sounds like things move quickly once you get the first consultation done.

Thanks again - really appreciate it 🙏

Yes Leeds only do one round, but 1 round includes all frozen embryos from the stimulation - it is better than some which is only one transfer.
Leeds doesn’t allow you to use the nhs funding if you have done any previous ivf (nhs or private). If you google the ccg funding, you can look at what is covered.

@NorthernDuckling that's good to know thanks again for all your help!

Hello. I am wondering if any one could help myself and my partner have been trying to conceive for over 2 years now. We have been to the doctors had all the tests done, and referred to Leeds hospital, we have been waiting now 48 weeks for our first appointment, and we are still no we’re near as every time I get in contact with the hospital the waiting time has gone up it’s now to 60 weeks, I have been told that we can’t get the tests done private and if we do we will loose our place on the NHS waiting list. I feel really bad for regularly ringing or emailing them to see if their is any update or were any closer but every time I ring it’s like the carpet is pulled away from us.

how long have other people in the Leeds area been waiting? And what to expect at the first appointment? As the waiting is driving us crazy we just want to know what is wrong! 😊

Hi @Anonymous78 i am sorry you have had to wait so long. I don’t have any specific information re Leeds waiting times etc but have you looked at your local health authority rules around ivf? It should tell you for example how many rounds if any they have will let you have - some places it’s 3, some it’s 1 and it’s dependent on a lot of factors. Also, I don’t think there is anything stopping you have tests at a private clinic to try & understand what’s wrong… the clinic should be telling anyone you have visited them etc due to confidentiality

Thank you for your reply, I haven’t looked at the local health authority on IVF. I know with Leeds it’s only 1 round of the treatment. I spoke to receptionist and she confirmed that if we had tests private we would be taken off the nhs waiting list and would restart to week one, this has also been confirmed by someone else on this forum about that happening in the Leeds area, I said to receptionist, it wasn’t good for anyone’s mental health, we don’t know what’s wrong or even we’re to go next and your just extending the waiting for our first appointment, she said first appointment is up-to 60 weeks now, and will your first appointment could only be a phone call.

one of the only reasons we haven’t done it private for the tests is because we don’t dare risk it going to week one again as we have waited so long for this first appointment.

@Anonymous78 thats such a long wait, I understand why you are so anxious. Might be worth checking with a private clinic if you went to them for any tests would they share this with the nhs clinic? Wishing you lots of luck