Need advice urgently about frozen embryos

[advice10]

Thanks need advice and in a bit of a difficult situation
Had IVF over the last few years and all failed
Had 2 embryos left frozen
Clinic was a bit strange on some respects and we lost faith a bit at the end

Anyway, ended up pregnant and had a baby naturally bit still had the frozen embryos and we decided not to keep them due to finances etc
Contacted clinic
Filled in forms
Heard nothing and no bill sent so assumed they had been thawed as per our request
By chance a few months later I asked them for confirmation as they always wrote about everything else
They hadn’t done it ??????

We asked why and no
clear answer
We asked again are the embryos def still there ??? They replied “please st is know first if you want to keep them then we will inform you” wtf?
Also teingbis if we want to not keep them we have to fill in the form ‘properly’
But I KNOW I filled it in right last time
The way they are telling is to do it wrong ? They want us to it seems tick that they can be used as donated I think they’ve made a mistake somewhere in their instructions

Now I’m thinking maybe I should just pay and keep them because what if it was a mistake but for a reason?
Can I get actual proof they are still there and still exist ? Even when we did embryoscope they never gave us a picture like we requested

Where is the clinic?

It is a London clinic
But unsure if I should name it so just need to know what are rules around his I have tried to look in hfea site but not clear on there

I feel uneasy and want to check what’s our position as things seem wrong
Like they took our instructions and completely completed forms done correctly and then didn’t thaw and discard? Just left ? But when I asked by chance as hadn’t had any confirming letter they hadn’t done it but acted a big strange ?

I would be a little concerned that they had used them as donated and are now trying to cover their backs. I'm not sure what you can do though. Isn't their a regulatory authority at all?

I said
“Can you confirm embryos still there ?” And they say “first do you still want to keep them or not then we will confirm the position”

I worry are they there if we do now Renew are we being charged for nothing as never even had a photo previously
I worry why when the forms were filled in correctly did they say months later “actually forms were wrong” but only after if chased it up ? I KNOW I did the forms right and how they are now telling me to do them - it’s not correct as I filled in for them to be consent withdrawn for treatment for me and husband and to thaw and discard
Not for donation
Not for training
I am sure forms were all correct

Hfea but on the website I’m struggling to find the scenario we are in to check

That's weird. I would insist they tell you what is going on.

It’s not like I can get any proof they are still there or our actual embryos there seems nothing I can do
But I dont trust them
If as they say ‘forms were wrong’ why then didn’t they chase that up with us?
Why when every other stage was documented and we got letters did they not wrote to us saying either forms wrong please change or wishes carried out embryos discarded ?
Now telling us to pay but no actual real proof embryos there as they’ve acted odd
Or don’t pay but fill form in this way which is wrong as is saying we consented to donation ?? That’s a mistake

It was only by chance I thought funny we didn’t get a letter saying it had been done and this was months after we sent forms back so I checked to be told no nothing had been discarded ??

You should be asking them these questions!

I asked even for a photo as we used embryoscope but they did not give us one now I worry did they even use it for us ?

I’ve askwd they just say forms were filled in wrong
They def were correct
Now they want forms filled in differently (and wrong)

How can o get proof as to the status of embryos in a clinic if they actually exist I’ve asked multiple times for an email just saying

‘You have 2 embryo stored at X’

They won’t state embryos. Only ‘sample’ but dh has semen sample there sonit could mean that they won’t say ‘2 embryos’ and this makes me uneasy
All other letters etc was very specific now they are being vague

I feel like if I had an email dated today for example saying that then I’d probably now consider actually keeping them as that letter would be ‘proof’
I’d then transfer them to another clinic for Treatment if we ever needed it

But it’s all very strange
Something seems to be wrong ?

I'd be concerned that they have been wrongly donated.

There seems to be two possible explanations
1.They have donated them incorrectly.

1. They have kept them and don't want to admit that they didn't follow your instructions.

We lost faith in them on our last cycle
Felt that embryoscope possibly hadn’t been used as requested as no picture
They would not follow our explicit instructions each time about freezing we kept asking for Day 5 but they repeatedly froze on day 2 or 3 against our wishes
So we have little faith anyway and so many cycles and FET failed

Iam hoping that it’s just an admin mistake that they are just badly run and didn’t follow our wishes not to keep them but I feel so much that somethings wrong

So many consultations where we said we know the chance is we get no embryos by trying to get to Day 5 but felt it was our decision
Got loads of eggs each time too so thought it was no problem but they would call and say ‘ we froze x amount on day 2/3’ and I was so upset each time as not our wishes

I feel that surely if the forms were genuinely incorrect then why did they not contact us ? Not bill us once renewal date came ? Nothing?
Until I by chance asked for confirmation

I’d stop asking questions about the embryos and ask them to send you details of their complaints procedure and start researching regulatory bodies and push fir a formal answer on what happened.

If I now pay for renewal but transfer them to another clinic would that clinic on receipt of them actually look to see there are 2 embryos present ?

I can get no answers from them so yes, this seems to be the only way. I assume the hfea is who I need to speak with

If they are not giving you the answer you want and you're finding t difficult to communicate with them I'd get an external source to mediate.

In the nhs you could use the patient liaison service. Don't know the equivalent for private, even a lawyer?

My worry would be that if you say you want them are they really yours? If you say you don't want them will they dispose of them?

Yes this is my worries
-Have they already gone? For training or research or donation because we said to discard ? Did the clinic think rather than just discard they could make better use and thought we would just think forms sent in that they were trustworthy to do it
-if we now pay will we be paying for something that doesn’t now exist ? It’s not something we can see-which is why I wonder to pay and transfer them and get another clinic to look-are there two embryos but then -are they really mine
So many worries
Surely they make so much money they would not risk this?
It must be a serious admin mistake just that

I don't even know how they could prove to you that they have YOUR embryos. That would always be at the back of my mind.

Did you say you'd tried to contact hfea? I would have thought they'd be able to offer some guidance.

Try HEFA as suggested above and maybe the Care Quality Commission.