Honest opinions - should I complain to/about my IVF clinic?

[Confuseddotcommm]

I’m a regular poster on these boards but have name changed for this as the info I’ll share is potentially outing.

Had a failed NHS funded cycle last autumn at a clinic located in an NHS hospital, but run as an independent unit and also accepts private payers.

A number of things went ‘wrong’ during our cycle, some of which were apparent at the time, others only now we are under the care of another clinic.

Firstly, they didn’t start me on stims until day 7 of my cycle. Prior to that I was on oestrogen supplements. No clinical reason given as to why they started me so late but they did say they try and ‘batch’ egg collections with other patients so they don’t need to do them each day. Me being naive and hopeful I didn’t question it. The knock on impact of this was that my embryo transfer took place on day 27 of my (28 day) cycle. I was told to take progesterone suppositories from the day of egg collection, but ultimately started bleeding 5 days after embryo transfer. Note - there was no down reg and although I reported the bleeding I was not offered a blood test for my progesterone levels. The bleeding continued and I was eventually offered a pregnancy blood test 13 days post transfer (original was scheduled at 16) to ‘confirm the inevitable’.

Issue 2. On the day of egg collection, they erroneously gave my husband a collection pot with somebody else’s name on. It was he who noticed and they apologised and replaced it with the correct one, but that really shouldn’t have happened!!! What if he had provided his sample into it??!

Issue 3: At blood tests I had prior to the commencement of treatment, it transpires my prolactin levels were sky high. As in - off the scale high. This has only been pointed out by my new consultant as a result of requesting my bloods from the prior clinic. I had not seen the report before. My new consultant has asked me to repeat the test but I am shocked and disappointed that this irregularity was not picked up or commented upon by my prior clinic.

Issue 4: Communication with the clinic was very poor. We got a call the day post egg collection to say we had 12 fertilised embryos, all looking good and to come in on day 5 for transfer. Heard nothing more until I am at the hospital, in a gown, on the bed awaiting transfer. Then the consultant comes in and says there is one 1 blastocyst and 1 emerging blast. Nothing else had progressed and we weren’t advised of this. I was shocked and a bit upset and we were also asked to decide on the spot whether to transfer 1 or 2. Ultimately it was our decision and I signed to say this but the clinic guided us towards 2 as ‘the chances are higher’. I’ve since read that the clinical evidence suggests that transferring 1 weaker embryo alongside a good quality one results in a lower pregnancy rate. I feel the advice we were given and the circumstances were just wrong. We don’t know why the embryos didn’t develop, it could be egg quality or lab conditions / human error, obviously one can be influenced and the other can’t. I guess I will know more after this next cycle.

Finally, it is 10 weeks since my blood test confirmed my negative result and we have had NO follow up from the clinic to speak to the consultant. I chased this prior to Christmas and we were told we’d be sent an appt 6-8 weeks after. I have felt very alone and like there has been no closure, other than the new consultant and clinic which we are paying a fortune for.

Honest opinions - are the above issues worth complaining about? If so - to the clinic directly or the HFEA? I just feel I want some answers, not all are ‘errors’ per se but collectively leave me feeling like I had a very bad experience and that the cycle was doomed to fail from the start. I should point out the clinic has far lower success rates than the national average and was only granted a limited (shorter) license by the HFEA at the last review date due to a number of issues.

[itwasalovelydreamwhileitlasted]

I've heard a few stories about NHS treatment lately - especially ones where they either manipulate your protocol to do collection on a day which is convenient for THEM or won't let you start unless you get your period on a certain day of the week 🤷‍♀️

I've done a couple of different treatment protocols - the one I'm doing at the moment you don't start stims until later and take an estrogen medication (tamoxifen) but i definitely started before day 7

At the end of the day you did get 2 blastocysts which actually is pretty good/the norm based on 12 eggs so the clinic will probably say that other issues aside you did have successful treatment

If I were you I would provide feedback to the HFEA in the hope that they continue to provide treatment that they are least improve but it sounds like you have moved on to a different clinic so you won't see the benefits directly

I have to be honest and say that you get what you pay for - when your paying its a completely different level of service to the NHS ones

[MrTumbleTumble]

I'm sorry to hear you had such a poor experience, and that the IVF failed.

I would absolutely recommend complaining to the clinic, from what you have described there were several errors. It might be that even if they don't see things as errors, they will explain the reasoning behind why certain things happened, which will help allay your worries.

We had 6 rounds of fertility treatment in total (3 each - same sex couple). The first three were DW at an NHS hospital, self-funded. They made a whole host of mistakes and like you, we felt left at sea after the third round failed and we had no contact from them for 3 months. We then moved to a private clinic, where they did further tests on DW and convinced us that the best chance of having a child was if we swapped and I had the treatment. They offered lots of counselling etc and were great initially but then a few problems started to arise, mainly with their admin. We complained and they came back very quickly with a full report of what had happened and why, and how they were going to change. It meant we were far more confident in having further treatment with them, and on cycle 3 I fell pregnant.

When I was around 35 weeks pregnant we coincidentally met the manager of the PALS service at the NHS hospital we had used previously. She convinced us to make a presentation to the board about our experiences. They really made us feel like they had listened, and again made changes based on our recommendations. Obviously the outcome of our treatment there was still the same, but we (and particularly DW) really felt some closure from having been heard, and happy that we had made a positive impact for other couples going through treatment.

It's so tough going through fertility treatment without the extra stress of feeling unsupported by your clinic, so whatever you do, remember to look after yourself

[Confuseddotcommm]

Thank you both for taking the time to reply, @mrtumbletumble it sounds like you have been through an awful lot so many congratulations on your success in the end.

I think I’m going to write to the clinic first, give them the right of reply, before raising with the HFEA. It is in the back of my mind that I’m just bitter because it was unsuccessful, but there are too many individual things that didn’t feel right, and I am a pretty rational (vs emotional) person, although I appreciate IVF is highly charged.

I think writing to the hospital / clinic will give me closure of sorts, otherwise I’m carrying anger and frustration into this next cycle. If I can improve the experience for others going though it it’s worth writing.

[Wintersun13]

Hello,

As someone who has zero emotional involvement with your treatment, I do feel like it's worth raising the issue. This isn't just a matter of not getting along with the doctor, serious mistakes were made, and more than one.

By all mean give them a chance to explain, justify and/or commit to change. If you're not happy with the response, you can push the issue further.

It won't change the outcome but it may give you peace and closure. And it may change the outcome for someone else, who knows.

[Willow4987]

I would also definitely complain. I guess the clinic and maybe PALS?

It does sound like a whole host of mistakes (avoidable ones at that) were made and it needs to be raised. Hopefully some good can come of it - closure and explanations for you and hopefully a change in their practice

[HavelockVetinari]

Definitely complain through PALS. I had a horrendous experience at Kings with all the issues you describe and then some. When I started at Guys the head of the ACU (Professor Khalaf) read my notes and sent them a letter absolutely roasting them for incompetence. NHS should not equal crap treatment, a principle which Guys are utterly loyal to (I know a couple of people who went there for NHS treatment).

[EL8888]

Another vote for you raise these complaints with them. It really doesn’t sound acceptable. With being NHS then it’s not “free”, you have paid for it indirectly

[Lemongrass1]

If I was in your position I would also be very disappointed in the treatment. The sperm pot issue should not have happened. It was lucky that your OH noticed himself but it shouldn’t have come to that, the staff should be double checking the correct sample goes into the correctly labeled pot. This is a big learning point for them. What if he hadn’t noticed and his sperm was used to fertilize someone else’s egg! It would have major ethical implications. I would also be very unhappy that they had found a very raised prolactin (which can be a cause of fertility issues by itself) and not communicated the result, nor bothered to investigate it further before starting IVF. I would agree with PP that it’s definitely worth bringing up these issues with the clinic via PALS. If mistakes are not highlighted then they will never learn from them. I think your concerns are absolutely valid and not a case of ‘bitterness’ that treatment didn’t work.

[Confuseddotcommm]

Thank you for your honest opinions.

You are right in that “it’s on the NHS” seems to be an excuse for poor treatment. Like we should be grateful regardless.

I pay an awful lot of tax, not that that should mean those who pay less get a lesser service, but you are right that we are indirectly paying. If the treatment is so poor with such a low success rate it is a waste of NHS funding. The crazy thing is I doubt it would cost them much more to do it properly! And if I was a self-funder at that clinic I’d be even more appalled.

Going to get a letter written, using my original post as the basis, and asking some direct questions, this week.

[GrumpyHoonMain]

The NHS has strict rules for IVF clinics during their cycles and you aren’t allowed a lot of things that might make the difference. For example I had totally different (weaker) drugs for my NHS cycle. By all means complain but nothing you have written about except the mistake with the pot is unusual. Yes it is possible to be told you have no embryos as you are preparing for the transfer, and yes starting stims on day 7 could be the right thing to do depending on the number of follicles you have.

[Confuseddotcommm]

Thanks @grumpyhoonmain. I feel that the discontent is emphasised by the fact I have had no follow up appt so I haven’t had the opportunity to ask those questions. Given we saw a different doctor each time we were there (in fact doctor time was limited, mainly nurses, which I guess is normal), I’m not confident in getting comprehensive answers at any such appt (if it does eventually transpire) hence the reason I want to address in a letter which means they have to specifically reply to each concern.

Wouldn’t the failing to follow up on the prolactin be a mistake, too?

[GrumpyHoonMain]

Not really - high prolactin levels by themselves don’t really mean anything. They are usually more problematic in combination with other ovlatorty/hormonal causes such as PCOS or hypothyroidism or pituary problems. In fact NICE recommends levels aren’t tested in women who don’t seem to have a set cause for their infertility

[Confuseddotcommm]

My infertility is tubal (in that I don’t have any tubes due to surgical removal) - I haven’t been diagnosed with PCOS or any other hormonal imbalance. Going to get a re-test tomorrow so I’m hoping the result has normalised.

[GrumpyHoonMain]

Yeah so in that cause it wouldn’t really mean anything. Don’t worry about it. The ‘good’ thing about Just having tubal infertilty is that IVF will probably work eventually. Of all my friends who did IVF the ones with tubal and MFI did seem to get pregnant far more quickly (usually in 2-3 transfers). So don’t lose hope.

[Confuseddotcommm]

Thank you

[EarlGreyT]

I agree with the other comments on here.

I just wanted to add, that I wouldn’t mention this The knock on impact of this was that my embryo transfer took place on day 27 of my (28 day) cycle as normal cycle days go out of the window with an IVF cycle so this is irrelevant.

The fact that you didn’t start stims until day 7 is a bit unusual, but it’s probably best if you ask the clinic about this from the angle of wanting an explanation and to understand why this was done, rather than asking them in a critical manner.

[Confuseddotcommm]

Thanks for the input @EarlGreyT and you’re probably right re querying that part rather than being accusatory. However, I’m still irked that I haven’t had the opportunity to ask questions via a follow up. >10 weeks is way too long to leave someone who has experienced failure waiting, NHS funded or not.

However, I still don’t understand how my natural cycle was switched off, as they didn’t down reg me. I was given oestrogen at the start and progesterone from day 22, both of which may have influenced my natural cycle but I’m unsure how it would have been switched off?

[Janefx40]

Sorry you had such a poor experience. IVF is stressful enough without all of that. And quite honestly the NHS pay a significant chunk for our treatment so it's a waste of their resources if the clinic screw up.

So yes, I would say you should complain if you want to and have the energy. IVF is stressful so do it if it is cathartic for you but don't feel you have to - do whatever is best for your state of mind which is far more important right now.

Incidentally I had massive screw ups and a terrible cycle at Guy's which a PP mentioned as a better NHS clinic (tho I should say for balance that I did get pregnant on that cycle - despite them not because of them but grateful nonetheless).

Not everyone down regs - I didn't - so you may have just been on a short protocol but obviously they ought to have explained this.

At one of my clinics they were not going to go ahead because of my high prolactin levels but luckily they came down before we started so this could be significant.

It's not unusual to be advised to transfer 2 or more. It depends on your situation. Although the HFEA have a strong preference for single transfers to avoid multiple births, if there is a low chance of the embryos being high quality (for example due to age or maybe very low AMH) clinics would often offer transferring more. I've not heard that this makes implantation less likely - I have read the opposite although I have no idea really about that.

Good luck whatever you decide and most of you, I hope things go well at your new clinic x