NHS referral Scotland - finding out about the 1st appointment

[Faramira92]

Together with my partner we were referred to the Glasgow Royal Fertility Clinic about 2 weeks ago. GP suggested to call to the Medical Records to find out what is the waiting list before we get the official letter with the appointment date.

What is your experience in finding out when the 1st appointment is? I realise that the NHS waiting lists are long, but would really like to know whether it's 3, 6 or 12 months:/ I can't seem to get through to the Medical Records and not knowing is just the worst ...

[Alexa2024]

Not sure about Glasgow as were at Ninewells but our timescale was: May 2023 referral from GP to fertility unit at FVRH, first appointment there was at the end of July and I had an HSG in August. We were then referred for IVF at Ninewells in October 2023. We got a letter in the November confirming our referral and our first appointment was in April 2024. We started IVF treatment in August. Hope this helps, as I know the waiting and uncertainty is horrible.

[Faramira92 in reply to Alexa2024]

Thanks for this info! Although I know it might be completely different, it's good to know what the approx timescales can be.

[Tnthketnf]

My experience is from a few years ago. My first appointment was about 12 weeks after referral but that was with a nurse to check eligibility criteria ( bmi, smoking, going over your history etc) and to tell me I am going on the waiting list. They gave me a rough estimate of 6-8 months to reach top of the list but this was to be backed to the referral. So the referral was June, my first appointment was end of August and I was told the 6-8 months would count from June. Also I was told to add another 1-2 months from top of the list to actual injections*. However covid happened just as we reached top of the list and we were delayed quite a bit longer. *GRI is oversubscribed and even when you are top of the list, it is doesn't mean that you will be starting with your next period. At least back then. You phoned up the booking line on the first day of your period and if they had space they booked you with your next period. So for example you phoned in May but your treatment took place in June. If they didn't have space in June they would most certainly take you in July. Back then it was the common thing to not get booked first time.

Even after I started my treatment there were quite a lot of unecessary delays, for example 2 months gap between having the AMH test and to get results and protocol. No explanation was ever given why that long.

Changing rules about rubella vaccination proof without informing me when I phoned to book and then suddenly at my baseline scan they brought it up "oh it's on the website you should have seen it" and another months delay to find the right proof.

Then for my second cycle doctors completely ignoring what happened in the first cycle, which meant repeating mistakes, and resulting in another month's delay.

[Woolooblue in reply to Tnthketnf]

I had similar experiences, it is just a lot of unnecessary delays and you have to spend a lot of time chasing them. And they are bad for not explaining things and expecting you to just know. I was about to start my 2nd cycle but it turns out I'm not allowed to for another 3 months because I went on holiday to disneyworld and florida has a zika risk that I wasn't aware of. That info isn't easy to find.

The team at the Royal infirmary are lovely and hard working, but the system is pretty rubbish. Be prepared to chase things if you haven't had confirmations through and be prepared for lots of hurdles and hoops they will have you jumping through.

[Faramira92 in reply to Tnthketnf]

Thank you, that's really useful to know. I know that everyone's journey will be slightly different, but it's also good to hear about others experiences

[Tnthketnf in reply to Faramira92]

I should have said that when the GP referred us we had already completed our tests and had been trying for 2 years, so the GRI-ACS didn't do any other tests, only put us on the waiting list for treatment, I can imagine that the wait would have been even longer if we had to do tests with them too.

[Faramira92 in reply to Tnthketnf]

Thanks! My partner already had his sperm test, which detected abnormally low count of sperm and I had private blood tests incl. AMH, which detected lower than average ovarian reserve :/ so hopefully the waiting won't be as long!

[Twiglet2]

hey you should get an appointment in a few months to get some tests first if you haven't had those that check your tubes are clear, amh etc (we were referred to Monklands for the tests as NLC so these could be at the royal or a local hospital) then we had a consultation about 3 months after that and bmi check etc they then discuss with you what waiting list you are actually going on (IUI or IVF) and how long that waiting list is (it’s usually between 6-12 months but does depend on what treatment and moves slightly all the time so I would allow about 9 months for that). Even when you reach the top there is then about 3 months of admin appointments and then you might not get booked in on your first cycle so this can take another 2-3 months to get booked in. So all in all from testing consultation, waiting list and admin/consents I would say give at least 15 months from now to starting any treatment. There is a closed Facebook page which is helpful too ‘Glasgow IVF and ICSI support group’ xx

[Faramira92 in reply to Twiglet2]

Thanks a lot! I'll definitely check the Facebook group too!

[Pinklily2]

Hey Faramira92! Welcome, you will find this community super helpful!

Just wanted to jump on to share my experience as same clinic, similar-ish to Twiglet2 . Original referral from GP took a few months, first app at Monklands in June 2022, found out partner had genetic condition which subsequently added us onto another waiting list before things could progress. App regarding genetics was September 2022 with further appointments. A few video and telephone calls spaced out, was told the waiting list at the time was longer due to Covid backlog and prioritising patients based on individual cases/age. Swabs and bloods done which were then repeated as out of date. Appointment December 2023 (3 months prior to treatment for egg collection), this protocol began mid-end February, egg collection March 2024, we required PGT and it would be frozen transfer due to this so more waiting. Further delays getting booked in for transfer as unknown at the time to me the lab actually closes down twice a year for maintenance (first one is July, unsure when the other is) which created a further backlog, finally booked in for treatment cycle (long protocol) August 2024, transfer September 2024.

My advice is stay hopeful, ensure yourself & your partner are within the criteria requirements and make sure your smear is up to date also. Sharing as I was not prepared for the waiting and delays and feel naive that I originally thought things would have progressed quicker. It’s a waiting game with plenty of hurdles, but like us all here - You gotta keep hope 🤞🏼 Good luck! ❤️

[Faramira92 in reply to Pinklily2]

Thank you! It's scary how long these things take, but I'm glad to know about it know as at least I can prepare myself mentally for it

[Pinklily2 in reply to Faramira92]

We had additional factors which caused delays so fingers crossed it won’t be as long for you 🤞🏼 In hindsight I wish I’d been more mentally prepared for the waiting, there’s a lot of it! 🫣Good luck on your journey and hopefully you get some dates soon ❤️

[Megrumpy]

I would ring up the clinic you have been referred to and ask what their waiting lists are like. If you are going for the NHS funded cycle, make sure you tell them that as if they also take private patients, there is generally a shorter wait time.

We found out by ringing the clinic that someone had forgotten to refer us. So definitely worth checking.

[Faramira92 in reply to Megrumpy]

That's a good shout actually! I can't believe that things like this happen that someone actually forgotten to refer you...

[JA-fnuk Partner Nurse Fertility Network UK]

As the last post says called your clinic up and ask them roughly what the waiting time is and also do they have a cancellation list For more information about the unit take a look at nhsggc.scot " Your visit to ACS "

good luck for the future

Janet-Partner

[Faramira92 in reply to JA-fnuk]

Thank you! That's very useful to know!