Waiting for IVF on NHS

[NHSivfhopeful]

Hi all, I am currently awaiting IVF on the NHS, we have been through all the testing SA etc and have been advised we need ICSI. We have now submitted the NHS funding forms and are awaiting to hear back, does anyone have any experience to how long this wait is and whats next?

Our consultant said that in our area it takes 4-6 weeks to process the funding forms, after which we will be scheduled in (doesn't say how long that will be) for an appointment to talk about starting the treatment.

I have just been told though our appointment to get the funding forms submitted won't be for another 6 weeks and for the life of me I do not understand why. We have all the test results. We know exactly what we need. Why wait 6 weeks for a telephone confirmation to send off the forms, which will then take another 6 weeks to be approved? (Just got off the phone about that so still processing. What?!!!)

We only waited a couple of weeks and then had an appointment for signing all the consent forms. After that there was no waiting list to start treatment so just had to wait for period to start, unfortunately that came over Christmas so had to postpone til January and then our clinic closed in January for lockdown but hopefully reopens to start treatment again in March. Hope you don’t have too long to wait!

@AnonymousXXIX @orchid10 thank you both for your responses. I have been fretting for weeks as I hadn’t heard anything and googling the process (which I can’t find anywhere!) also it’s nice to know I’m not alone in this wait!

It was a bit different for us, our clinic did the application for NHS funding on our behalf so there was literally no waiting. Had an appointment to discuss our issues and treatment plan and as soon as we signed the consent forms, it was good to go. Decided on the clinic early May, started IVF cycle end of June. Hope you'll hear from them soon OP!

(Pre-pandemic, that was...)

@Giraffaelina so we were told we need to do a bunch of tests before they can send off the funding forms (this is the second time; doing them the first time lead us to the fertility clinic in the first place, but apparently there is zero coordination between GP and clinic). Ok I understand that part. Ish. They need to be sure they have all the info; making funding requests for unnecessary treatments would be very bad!

But now, all tests completed, we have to wait 6 weeks to get a telephone consultation for them to consider sending the funding forms off for us.

Should I call them again to insist they send the funding forms off sooner than that? I am so worried someone there is just going to get angry with me for calling them about it all the time. I must sound like the most impatient patient they have ever had. (But I just don't know why we would waste 6 weeks waiting right now.)

Just to be clear: I am one step before @NHSivfhopeful in this process. I am not waiting for the funding confirmation, I am waiting for the funding forms to be sent off. (As I said, after that, I was quoted a 4-6 week wait for confirmation of the funding, with 'no wait to then start the treatment'.)

[quote AnonymousXXIX]@Giraffaelina so we were told we need to do a bunch of tests before they can send off the funding forms (this is the second time; doing them the first time lead us to the fertility clinic in the first place, but apparently there is zero coordination between GP and clinic). Ok I understand that part. Ish. They need to be sure they have all the info; making funding requests for unnecessary treatments would be very bad!

But now, all tests completed, we have to wait 6 weeks to get a telephone consultation for them to consider sending the funding forms off for us.

Should I call them again to insist they send the funding forms off sooner than that? I am so worried someone there is just going to get angry with me for calling them about it all the time. I must sound like the most impatient patient they have ever had. (But I just don't know why we would waste 6 weeks waiting right now.)

Just to be clear: I am one step before @NHSivfhopeful in this process. I am not waiting for the funding confirmation, I am waiting for the funding forms to be sent off. (As I said, after that, I was quoted a 4-6 week wait for confirmation of the funding, with 'no wait to then start the treatment'.)[/quote]
I'm so sorry, I didn't mean to cause confusion! So to be clear, it initially started with us going to the GP who did blood tests for both me and DH (and sperm analysing) and then got referred to the infertility department of our local hospital where they did a whole bunch of other tests (Blood, more sperm, ultrasounds, pelvic x-ray etc). Once it was determined we needed to do IVF (once they diagnosed the issue), we were told to choose a clinic - whether NHS funded or private was up to us of course. So once we chose the Fertility clinic, there wasn't any more tests that needed to be done as all our results were sent over from the hospital. And the clinic accepted NHS funded patients and they took over all the application of funds etc so we didn't have to worry about any of that. I hope that makes more sense now. I again apologise, I completely side stepped the whole testing part!! So sorry!!!

@Giraffaelina that is totally clear! I was just going over it again because that sounds like your process was totally different than what they are trying to do with us here... so maybe I am justified in calling them to follow up?

We're MFI looking for ICSI on the NHS after a GP referral, just for reference.

@AnonymousXXIX @Giraffaelina thank you for explaining. This process is so confusing and the fact its different all over the country really doesn't help. I called the IVF clinic again today to find out timings and they advised to wait 2 more weeks until we get a letter about an appointment (still not sure what this appointment will be). Hopefully some news will come soon.

@NHSivfhopeful good luck! Keep calling them ; ) And apologies for somewhat hijacking your thread.

[quote AnonymousXXIX]@Giraffaelina that is totally clear! I was just going over it again because that sounds like your process was totally different than what they are trying to do with us here... so maybe I am justified in calling them to follow up?

We're MFI looking for ICSI on the NHS after a GP referral, just for reference.[/quote]
We too had MFI and ICSI.

Ahhhh, it is indeed so confusing!! So you had all your tests done first time around, approved for funding and now second time around you have to do them again? Is this a completely new cycle or are you trying with same embryos form the first cycle? Sorry if I misunderstood 🙈 But yeah, that's for certain that the test results of our investigations at the hospital were directly sent to the clinic, seems that's the part that is different for you...?

We never had to repeat testing as the two embryos we tried with (1 fresh and 1 frozen) were from the same (first) cycle.

Gosh, I'm not the right person to give advice as I'd literally be hounding them with phone calls 🙈 I'm so impatient, I want to know everything YESTERDAY! Haha! Wishing you all the best! X

[quote NHSivfhopeful]**@AnonymousXXIX* @Giraffaelina* thank you for explaining. This process is so confusing and the fact its different all over the country really doesn't help. I called the IVF clinic again today to find out timings and they advised to wait 2 more weeks until we get a letter about an appointment (still not sure what this appointment will be). Hopefully some news will come soon.[/quote]
So I guess once funding is approved, and you already know what treatment you need, the next appointment could be the consultation to get the ball rolling and agree on a treatment plan, protocol etc..I certainly have my fingers crossed for you, it's so exciting (terrifying too I know) to be able to finally get started after all the paperwork and testing! Good luck OP :) x

@Giraffaelina we haven't had any rounds yet at all.

We found out (by coincidence, long story) that DH has disastrous sperm count, morphology, etc. etc. Since then he's has 2 more SA, 1 US, and seen an andrologist, and done a load of bloodtests. All through his GP, apart from the 3rd SA. I also had a load of bloodtests and an US, through my GP (all fine, for now).

GP then referred us to fertility clinic to get started on the ICSI journey. Confusingly, this had to go through my GP rather than his (even though he has the 'issue'). We were assigned to the clinic with the earliest available appointment in January - but upon going there found out it was too far from where we lived, so needed to be transferred. We did speak to a consultant for over an hour there (phone), and filled out a large stack of forms.

New clinic is the one that booked us in 6 weeks from now. Initially, they want to have a 'transfer consultation' and discuss the latest SA results (again). But really, what they need to do, is sign off on the funding forms and send them off! We have been diagnosed, well and truly. And we were recommended ICSI back in October already. Not much else to say there, bring on the treatment! But that looks like 6 weeks (sending off funding forms) + 6 weeks (funding approval) + waiting for initial treatment consultation (who knows how long?) + then waiting for my period of course.

We won't go private, because waiting 3 months is worth all that money. But also wow if we had gone privately we could have started in December...

• should add, I am glad there is not a waiting list! Delay is just administrative. For anyone reading this thread who came for the original question.

[quote AnonymousXXIX]@Giraffaelina we haven't had any rounds yet at all.

We found out (by coincidence, long story) that DH has disastrous sperm count, morphology, etc. etc. Since then he's has 2 more SA, 1 US, and seen an andrologist, and done a load of bloodtests. All through his GP, apart from the 3rd SA. I also had a load of bloodtests and an US, through my GP (all fine, for now).

GP then referred us to fertility clinic to get started on the ICSI journey. Confusingly, this had to go through my GP rather than his (even though he has the 'issue'). We were assigned to the clinic with the earliest available appointment in January - but upon going there found out it was too far from where we lived, so needed to be transferred. We did speak to a consultant for over an hour there (phone), and filled out a large stack of forms.

New clinic is the one that booked us in 6 weeks from now. Initially, they want to have a 'transfer consultation' and discuss the latest SA results (again). But really, what they need to do, is sign off on the funding forms and send them off! We have been diagnosed, well and truly. And we were recommended ICSI back in October already. Not much else to say there, bring on the treatment! But that looks like 6 weeks (sending off funding forms) + 6 weeks (funding approval) + waiting for initial treatment consultation (who knows how long?) + then waiting for my period of course.

We won't go private, because waiting 3 months is worth all that money. But also wow if we had gone privately we could have started in December...[/quote]
Talk about complicated!!!

I think it went through your GP rather than his as even though it's MFI, you will be the one receiving treatment, therefore you will be the patient at the clinic. It was the same for us as well.

I'm sorry this has turned out to be so complicated and long winded for you, like it's not stressful and consuming enough! I do completely understand the reluctance of going private though. Unfortunately it does seem (unfairly!) like all the clinics have different procedures and best practices but this 6+6 weeks is a bit nuts and excessive!

At the moment I was told wait is 4-5 months