Referral Wait Times

[FlyOnTheWall89]

We were referred mid Jan and I've had a letter for a telephone appointment at the end of July. This just seems like a cripplingly long wait time just for a telephone appointment?!? What can I expect from this first telephone appointment and what would the process be after that? We are London based. Thank you!

I think it all depends on the clinic. We went to Kings and have been seen really quickly (just 1 month from referral to first appointment) from there a lot of it depends on your cycle as some tests need to happen on certain days. Essentially we were referred mid Dec, first appointment was 12th Jan and we started the cycle last Monday. We had had some of the tests already (sperm analysis and AMH) so that may have sped thing up but still I was pleasantly surprised at she short wait time!

Thanks @Sar7h - after the above I rang to see if the appointment would possibly be moved if there was ca cancellation and there happened to be one the following day so she booked me in. I've had that appt now, I have funding confirmed and have my next one, which I guess could be the start of everything on Friday. We have already got all our tests in place. 😊. Good luck with your cycle - that is a really quick turnaround. I think we want to try for a bit longer and then start things in the summer. X

Hi Sar7h, I am going to see if I can get a GP referral next week and if successful, I too would be looking at Kings. Can I ask what are the tests Kings had you do please (to confirm funding and get started on IVF)? I am thinking I may try and do them privately to try expediting/having things ready (especially if some tests need to happen on certain days of cycle adding to lead times).

I already have privately done SA (of OH's) and my AMH + AMC scan....

I think if your GP makes an NHS referral then that is all that is required for funding. We didn't have to do anything except provide proof of ID, they will also check if you or your partner have had children or prior fertility treatment.

Timeframe wise if you have had AMH and the SA (done within 12 months) I don't think having any additional tests will expedite things. They will also get you and your partner to do some standard screening blood tests - syphilis etc - but this wont push back the timeframes.
After my initial consultation and nurse consultation I had to wait until the next month for an ultrasound toward the end of my cycle to confirm I had ovulated. I then started taking the stimulation meds with my next cycle. My issues were mostly tubal (although I have also had multiple miscarriages and long gaps between conceiving) so this might be different for others depending on cause of infertility.

We actually ended up doing both an NHS and a private cycle both at Kings. I was at high risk of OHS so we needed to freeze our embryos to give my system some time to calm down before transfer and took the opportunity to do another round and "bank" some additional embryos while I am still young(ish). My experience was exactly the same both rounds - it seems like once you are in their system they treat everyone the same - same waiting times, same clinicians etc.

I found that they do somewhat drip feed you information and their protocols are a bit different to other protocols I read about on-line, but I felt in very safe hands throughout the process and I am currently 23 weeks pregnant with the first transferred embryo and have 4 four additional good quality and PGTA tested frozen embryos.

I hope this helps, I know I was very keen to get things moving asap and even a few weeks delay felt like the end of the world. Best of luck with everything!

Thank you very much for your reply @Sar7h . If you don't mind, a few more questions:

1. I'm curious they allowed you to do a private round as well as a NHS round at Kings, because I thought the NHS eligibility was only for people who had never had any treatments done privately (ie. if you have had private IVF, you are no longer eligible for NHS IVF). Is this not the case at Kings? I know the elgibility rules differ with every NHS CCG. Reason I ask is, I want to get started privately asap but have some NHS rounds as back up (as we can't possibly pay privately for several rounds if needed). I thought this wouldn't work if the NHS eligibilty rules us out for having had a private treatment.
2. How long did they take to schedule your egg extraction cycle, from first consultation?
3. How many months/cycles did you leave between extraction and transfer (I notice you said you took a break and did another round as well before transfer)? Was this your own choice, or on their advice, or due to the time it takes to do the embryo genetic testing?

Sorry to ask so many questions. We just found out about OH's Oligoasthenoteratozoospermia plus my own low AMH and AFC about 2 weeks ago. I'm in the early stages of processing it, trying to figure out timelines (private vs NHS), making lifetsyle changes, taking supplements, etc. A bit sad and daunted but trying to keep my hopes up.

1 - We started the NHS round first but as I was at high risk of OHSS (www.mayoclinic.org/diseases-conditions/ovarian-hyperstimulation-syndrome-ohss/symptoms-causes/syc-20354697) they had to freeze my embryos, so we took the opportunity to do a private round at this point, before transfer and while our initial embryos were on ice, to collect more eggs to "bank". This was totally our choice and a bit of an unusual thing to do but felt like the right decision for us as I am in my mid 30s and we want multiple children if possible. It is also worth noting that they wouldn't have transferred the "private" embryos on the NHS under the 3x transfer within 12 month rule.

If you have low AMH you are probably not at risk of OHSS so they will likely do a fresh transfer in the same month as your egg collection on your NHS cycle - this is the preferred option and on the NHS you don't get to opt for a frozen transfer at a later date unless you medically need to.

2 - We might have been very lucky with availability but for my NHS round the initial consultation was 12th Jan - less than 6 weeks after being referred - and the cycle started as soon as possible after this. I had to wait for my period, go for a scan at day 17 to check I had ovulated and then start medication with my next period which was on 1st March. Egg collection was 14th March. Timings were the same for the second (private) round but I didn't need to do the initial consultation. Essentially first egg collection - wait for period - wait for day 17 for scan to check ovaries - wait for period - start meds - egg collection c.day 14. My second egg collection was on the 7th May.

3 - I had to leave 1-2 months to allow my ovaries to "calm down" before they could transfer an embryo, but if you aren't at risk of OHSS they will do a fresh transfer 3-5 days after egg collection. Mine was a bit complicated as I initially wanted to do a natural frozen transfer cycle but my June/July cycle was extremely long - I think 45-50 days - so by the time I ovulated my womb lining was not optimal so they had to push back for another month. We opted to do a medicated transfer the next month instead which is much more predictable. Eventually we transferred an embryo at the end of August - who is currently 23 weeks and giving me a good kick!

FYI for the second cycle I was enrolled in the PGT-A genetic testing trial they are/were doing at kings which would have also meant they had to freeze the embryos and wait a month, but I would have had to freeze anyway so it was a no brainier.

I would recommend reading the book it starts with the egg - it could be complete coincidence but I started doing the supplements and eating better as it recommends in February, so less than 1 month before my first collection but 3 months before the second and I had much better results second time round. 18 eggs vs 13, twice as many fertilised and we ended up with 5x 5/6 day embryos instead vs just 2 from the first round.

I am happy to answer any questions but I can only tell you my own experience and as your causes are quite different to ours they might have you on completely different protocols. I hope your GP appointment goes well this week and you get a really speedy referral, the whole process is a bit of an ordeal but at least you know you are doing everything to push things forward. Good luck!

Thank you @Sar7h . So happy to hear you are pregnant, congrats!

Had our first appointment on Wednesday and they have accepted us onto NHS funded IVF; they said as for whether ICSI or not will be decided on the day looking at the sperm under microscope and they also said they didn't think PGT-A testing was necessary as my age (35) isnt too bad for egg quality. The private consultant we saw was very clear on ICSI + PGT-A so wondering what to make of this (and if i should isist on these). Any thoughts?

Alos shame because of the CCG they said they would only fund 1 round but any remaining eggs (or blasts? need to check!) will be covered for future transfers, however many left. Think you went to Kings too so i guess perhaps the same for you?

We are both taking supplements and I did read that book but the private consultant we saw seemed to think supplements dont work for all, so we were not looking to wait 3 months to get started; albeit, having started supplements early to mid Jan, we will be 2.5 months in if they do the first round in March (and March is what they were indicating at Kings, as they want to do baseline scans, blood tests, etc in Feb). If I have to wait another 0.5 months, the whole thing will have to go into mid April (and its SIL's wedding in May); I am finding the waiting game and uncertainity very stressful. The idea of being pregnant at the family wedding but too early to tell is scary; the idea of not being pregnant even by May at the wedding, is depressing. The idea this may all not work and I may not be pregnant all year and beyond is just.............. how do you get through this? I am not close enough with family to share what we are going through with them so the uncertainity makes every "diary" event so stressful and on the other hand also trying to remain grounded and not get hopes up. I feel like living under a rock for a few months; like disappearing from all social circles.

(I wont even talk about how I feel inside when I smile at the news of every other friend in their second, third, millionth pregnancy... )

Hi @CDiamond

Sorry I didn't reply sooner, I read this on my phone and then completely forgot!

Re PGT-A testing I had this for free as part of their clinical trial which was only open to women over 35. For me I felt it was worth doing as I have a history of miscarriage, however I don't think I would have paid for it as there is very limited clinical evidence of improved outcomes and there is a risk of damaging the embryo. I have no personal experience with ICSI however if it helps I do think they make judgements clinically on what is best for your case and not cost. For example I was at risk of OHSS on my NHS cycle and they elected to freeze the embryos rather than doing a fresh transfer which would have cost much less.

That was the case for me too, it was 1 fresh and/or up to an additional 3 frozen transfers within a 12 month period, it depends on how many embryo's you get though - if you only get 1 or 2 then that is it.

Yeah there isn't much proper evidence for the supplements - definitely not worth deferring treatment for! But they did seam to work for me so thought I would share.

I completely understand where you are coming from with the events thing - I can't help but think things like if it had all worked out to plan I would have a toddler running around at this wedding etc, and other peoples announcements, it is just so hard! If you can access counselling I would highly recommend it. I was lucky enough to get some sessions through my works healthcare scheme, I think you also get 1 session with the IVF treatment. Most of my immediate family and a few close friends knew what we were going through but it was still extremely helpful to talk to vent at an indifferent third party about my hopes/ fears/ dreams/ frustrations etc without any judgement or having to edit myself at all.

I hope everything is going well so far and best of luck for your first round next month!

@Sar7h thank you so much; yes I will be getting some counselling privately I think. Thank for all that info. and insight.