UCLH - has anyone restarted IVF?

[Jac119]

Hello,

Pre-lockdown I was due to have a FET but obviously this all got cancelled. I hadn’t started meds yet as was waiting for my next cycle.

I know UCLH is able to restart treatment but whenever I call I just get told they are still working on the waiting list?! So just wondering if anyone has heard any different and if anyone has been able to resume treatment.

I know I won’t be top of the list but just want to know that they are at least getting started

xx

Hi Jac119,

I’m with UCH RMU and was told they were hoping to restart in mid-June as they were concerned about a second wave and staff still redeployed.
I had a call from the bookings team yesterday and they’ve given me a telephone consult in 2 weeks.

@Corker123 that’s great you have a consultation scheduled - good to know things are moving forward. If you don’t mind me asking, what stage are you at in your treatment?x

My IVF cycle ended with a freeze all so I’m awaiting a FET now too. I’ve struggled to get information from them regarding prioritisation and where I am on the list. Perhaps they don’t yet themselves, I appreciate it must be difficult.

It’s hard not knowing and not being able to make plans. I hope you hear from them soon too.

Thanks, fingers crossed it’s not too much longer till they call. Hope your consultation appointment goes well!x

I am with UCLH RMU.

To be honest i have found them entirely unprofessional with their communication. Not getting back to me for days, or different nurses providing conflicting information, or them not even knowing what treatment is should be on. The doctor I saw was great, but the service is nurse led and you really have to chase and check everything. Try emailing the manger Kate if you are still in limbo.

Good luck.

Hi ladies,

I had a telephone appointment this week with UCH RMU and was told I could have a FET soon. Couldn’t say when exactly but was told within next 3 months.

I was supposed to start with the injections mid-March, but was phoned by the Dr and told not to, because of covid. The Dr told me to continue naturally ttc — we did, and I had a miscarriage, which was surgically managed in May.
I completely agree with you, @LondonIVF12, got so much conflictual information from both nurses and doctors. At the beginning they were not giving any - I was phoning them because I just went through a miscarriage and was concerned that it might delay me further - but it seems I'm infinitelly delayed anyway.

They definitely restarted treatments mid-June or so I've been told, but they are prioritising women who are 40 and have low ovarian reserve (5). It doesn't matter where you were in the process before the crisis, now new rules apply, which is quite a bummer for all of us who have been on the cusp of starting.
I have just received a letter telling me that my telephone(!) appointment for end of June (that anyway nobody informed me about despite my calls and e-mails) has been rescheduled for the end of September. I'd like to complain about the lack of communication and professionalism. Does anyone know where and how?
Good luck to you all!

@belangrijk I am so sorry for your miscarriage.

I am sorry you are experiencing this poor level of care and communication at this difficult time.

I made an informal complaint to the doctor head of the unit - Mavrelos. I haven't gotten as far as figuring out how to make a formal complaint - i think there is a central hospital complaint policy. I genuinely don't think the doctors are aware of the poor communication patients receive from the coordinators - so hopefully any feedback you send will provide some insight on how to improve things in the future.

Good luck for September. X

Thank you @LondonIVF12!

That is a very good idea. I'll do the same, for a start, straight to the top. Raising awareness is the least we can do.I'll post here if I find out more about the formal complaint policy. It does look convoluted so far.

Can I ask if you have a personal e-mail of the manager Kate, or is it the generic one from the forms?

Thanks again and good luck to you!

@belangrijk

No problem. It was just a generic one but she is good at replying.
[email protected]

X x

Thank you @LondonIVF12 , that's fab!
xx

Hya,

@belangrijk so so sorry to hear about your miscarriage, can’t imagine how difficult it is to process that while still having to struggle with the clinic.

Im sorry to hear how frustrating this is being for everyone Trying to get a clear update from the clinic. I’m in the same boat, got an appointment letter with a date in July, this was then cancelled and rescheduled to August, then got another letter this week saying that one had been cancelled and rescheduled to the end of September!! I called the clinic and it turns out none of those appointments was the one I actually needed, so I’m glad I didn’t wait until the date in September to say anything. I’ve now been given an appointment in August so I’m just hoping and praying it’s the right appointment and that it isn’t cancelled! The stress is unreal.

Kate is good at answering her direct phone line too (and doesn’t rush you off the phone either) - I’ve spoken to her a few times but it wasn’t until I spoke to one of the nurses that I got the correct info. So if you do speak to Kate, just double check she’s booking the correct appt for you. (I’m not trying to blame her, just think she has so much to manage at the mo that it isn’t all going as smoothly).

All in all I’m super frustrated and because I don’t have regular periods, I’m unable to try in the meantime

I had an appointment for end March that was postponed to a telephone appointment. Ended up having a face to face appointment late May. They found some cysts and recommended I get a check up in 6 weeks. I have not been able to get that check up despite calling / emailing.

I received a letter informing me of a telephone appointment to be held earlier this week. No one called. Eventually I got through to the central hospital booking team who told me that the appointment had been rescheduled due to COVID to September. I also received a telephone call informing me that my treatment would start in December :(
I'm worried there could be a 2nd wave in winter an my treatment will get postponed.

All in all very frustrating. I appreciate that IVF may be seen as a discretionary treatment in this environment but on a personal level delay is quite devastating especially when it has already been a long journey to get to this stage.

I'm thinking of exploring private options to get treatment sooner but it's very expensive.

Hi, just 'browsing' or falling into the IVF Internet hole while trying to pretend that in
I dont mind when my next cycle starts!
I am not sure if UCLH is NHS only or private too. Definitely if you are NHS funded if you have tried to talk to managers etc and feel like you are getting no where the next place would be to contact the PALS (patient advice liason service) whose job is to stop complaints before they happen. And if unable will give you advice on how to take the matter further.
Because of Covid I cant see anything actually moving any faster sadly. They can however highlight and make the team act on the lack of communication.
Hope you all hear more soon.

For those of you who are on the NHS at UCLH, would you mind sharing how long the process took? From waiting for first appt to getting to treatment stage?

We're just waiting for our first appt now and I know things might be even slower at the moment due to Covid, but keen to get an idea of timeframe through the whole process.

Thanks!

From my first face to face in May to scheduled treatment in December wait time for me is 7 months. Pre COVID I was told around 3 months

@RosemaryRosemary thank you for that info. it's a shame Covid has had such an impact on timelines. Did you have to have additional tests and things after your first appt? We have done a bunch of tests already so wondering if that could potentially reduce down the waiting time.

Hi @Luz192 before covid i barely had to wait. My first appointment was at the end of June last year, they did all of our tests within the next 6weeks and then we started treatment in September. They advised us to go straight for IVF but we wanted to give iui a try...it didn’t work so we started IVF in December last year.

Covid aside, I always found them to be pretty on the ball so I’m hoping things get back to normal soon!

Hi @Jac119 - thank you - that's really valuable info. Sounds like they are pretty good generally, also hoping things return to normal soon.

Hope things go well for your appointment in August too. May I ask would this be your second round of IVF coming up?

@Luz192 no, I’m still on my first round of IVF. I had my egg collection in feb but was a freeze all because I was high risk of OHSS. I was just about to start the process for a FET when we went into lockdown :-(

@Jac119 Ah that must have been so difficult and frustrating with the IVF being paused. I hope and pray for a successful transfer for you next month!

What were the reasons you were at risk of OHSS? I’m just getting my hormones tested for PCOS at the moment because my ultrasound showed polycystic ovaries, so I have a feeling I may also be at risk of OHSS too.

@Luz192 I have PCOS and my AMH was really high so they were really cautious with my dose for stims etc. I’m not sure if it’s the same for everyone, but I had a blood test every day I was stimming and a scan every other day so no matter what your test results say, I’m sure you’ll be in good hands.

In case anyone is reading this after - I've not received the letter yet but just logged onto my NHS e-referrals account, and I can see I have an initial fertility appt scheduled for Sept 9th. I got referred to UCLH about 2 weeks ago (after being referred initially to C&W but them not booking in an appointment for weeks on end). So about a 2 month wait for first appt from referral, not too bad given current Covid scenario. Just hope it doesn't get cancelled or anything now.

@Jac119 I hope things have been going well for you - have you had your August appt yet?

We found out the doctor had wrongly referred us to the Menopause clinic! The worst thing is it was under my husband's name, so not sure how they managed to do that.... So our appt has been a bit delayed but will still be in September luckily.

Can I ask, for AMH, did you get that tested at UCLH, and if so, was it covered by NHS or did you have to pay a cost? I'm just wondering if I should get it done privately to minimise any further delays with additional testing. Unless if it's something they would cover and do relatively easily as part of the treatment plan, then I'll wait...

Hya, I’ve changed my username since I last posted on this thread but I am @Jac119 lol!

I did have my appt earlier this month thanks and it went perfectly. I was able to start meds for my FET this cycle, so if all continues to go to plan I should be able to transfer an embryo around mid-September.

UCLH did test for AMH and we didn’t have to pay for this. It was all done as part of the standard blood tests.
I can’t imagine it would be any different for you but if you wanted 100% piece of mind, might be best to give them a quick call to double check.

Prior to IVF I didn’t even know what AMH was, so I didn’t know to ask what my levels were. So I’d say to make sure you ask the results one you have bloods done. They only mentioned my results when they were talking about my risk of OHSS. But the AMH test itself has been done months prior and was on the system, i just didn’t think to ask about it!

Hope that helps xx