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PGD @ Guys

3 replies

Kit82 · 11/12/2020 18:07

Hi everyone! This is my first time on here. Don’t know all of the abbreviations as yet so bear with me!!

We had our first consultation with Guys ACU yesterday. We’ve been TTC for nearly 3 years with miscarriages at early stages and loads of chemical pregnancies. I had all the tests you can imagine, all clear, but the last blood test that was done for my husband showed he has a translocated reciprocal gene arrangement which could be causing our miscarriages. Therefore we’ve been offered PGD at Guys ACU.

We were seen by Cambridge hospital first who were said they’d referred us to Guys on 1st March but our referral somehow went missing (for a second time in this long process by different hospitals) and ended up being sent 5th May. We complained about this and asked to have our initial consultation sooner but Guys said no so we were given the date of 10th Dec.

Feeling incredibly down and hopeless after yesterday, don’t want to put too much on here about our experience yesterday as don’t want to upset or put others off as I’m sure there are more good experiences than bad but it wasn’t what I expected, I don’t know maybe I was expecting too much, I hoped to feel excited that the ball was rolling but left feeling worse than when i went in.

I was originally told the wait to start treatment from our initial appointment would be 3-4 months so in my mind I thought March at latest which is fine as we’ve just moved house and need to do a few bits to get it how we want so can occupy ourselves whilst we wait and it will soon whizz by. However, we were told yesterday 6-8 month wait, just feel so upset. I’m 39 in July and was told although we are entitled to 3 rounds I’ll probably only get 1, 2 if we’re lucky. Not sure the extra wait is because we’re having PGD on top of IVF.

Anyone else going through this

OP posts:
mr092 · 24/03/2021 12:23

Hi, we started the PGD process with Guy's last year, around June time, and we've only just been referred to the ACU. Just wondering how long it took for you to get an ACU appointment once you'd be referred? Based on what you said, we're going to have to wait for the ACU appointment and then another 6-8 months on top of that?
Would like to hear more about your appointment so I know what to expect!

Kit82 · 24/03/2021 20:54

Hi @mr092

Went to GP beginning of 2019 who referred us to our local hospital for tests, the very last yet we had showed my husbands BT so we were then referred to Addenbrooks to talk to a Genetic Counsellor who we saw in Feb 2020.

Following that appointment Addenbrooks then referred us over to Guys or so we thought! I chased Guys May 2020 as we hadn't heard anything and they said they never received our referral which was so upsetting and stressful so Addenbrooks referred us beginning of May.

We then saw Guys own Genetic Counsellor August 2020 via Zoom, then first ACU appointment was beginning of Dec 2020.

I'm afraid it took a complaint from us for them to get back to us with firm dates to start treatment, age is most definitely not on my side which I highlighted and also the 'lost' referral from Addenbrooks, I know that's not Guys mistake but they are both NHS and along with Guys shocking communication I had no choice but to complain!

Should hopefully start treatment end of May with egg collection beginning of June. We were on the brink of trying to transfer our funding to a private clinic that takes NHS with shorter wait times but then Guys dangled this carrot in front of us with the May date so we decided to stick with them for now.

There's a Guys PGD specific support group on Facebook that you may find useful.

Wishing you all the best in your journey, all I would say is be strong and persistent with Guys. They have a great success rate so I'm trying to ignore their terrible communication xxx

OP posts:
53rds · 25/03/2021 06:35

We are also due to start PGD soon although not at Guys and for a different reason. We have also been waiting to get started for over a year. We were told recently by our consultant that the reason for the delay is that they have to develop the genetic test ahead of time and that some of the substances used in that process are also being used for Covid testing so in short supply. I may not have all the details correct but I thought I would let you know anyway as we felt a bit reassured that we hadn’t been forgotten.

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