PGD NHS waiting times

Forum for those considering or embarking on Pre-Implantation Genetic Diagnosis or Aneuploidy Screening

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rachdesign1
Posts: 30
Joined: Sat May 30, 2020 8:17 pm

PGD NHS waiting times

#1 Post by rachdesign1 » Sat Jan 09, 2021 11:27 pm

Hi, I wondered if anyone had any insight into the process and possibly timescales for pgd funded by nhs.
I’ve just found out we should quality due to a genetic condition but was informed the wait time could be up to 2 years due to covid.
Does anyone know if this is correct?
Also does anyone know if PGD is offered in Manchester as I wasn’t sure if it was only available at care Nottingham.

Any help or advise anyone can give would be really appreciated.

Thanks

Rachel

Hopeful19
Posts: 6
Joined: Sun Jan 10, 2021 1:18 pm

Re: PGD NHS waiting times

#2 Post by Hopeful19 » Mon Jan 11, 2021 12:28 pm

Hi Rachel

I am currently awaiting treatment for PGD IVF at Care Nottingham and I understand this is the only Care centre which offers this.

Like you I made enquiries within the NHS and they said the wait could be upwards of 2 years due to the COVID backlog at St Guys London and felt we couldn’t wait this long. All of the fertility side of the treatment can be done at a satellite clinic, which for us would be Leeds but I understand the egg retrieval, genetic testing and implantation is all done at St Guys.

If your eligible, the NHS will fund up to 3 cycles at Care and they use CooperGenomics for the genetic testing side of things.

We are hoping to start treatment soon, fingers crossed! 🤞🏼

rachdesign1
Posts: 30
Joined: Sat May 30, 2020 8:17 pm

Re: PGD NHS waiting times

#3 Post by rachdesign1 » Tue Jan 12, 2021 8:41 am

Thanks so much for your reply.

So did you decide the wait for NHS was too long and are now self funding?

Were you told the waiting list for care was shorter?

Thanks again for all your help.

Hopeful19 wrote:
Mon Jan 11, 2021 12:28 pm
Hi Rachel

I am currently awaiting treatment for PGD IVF at Care Nottingham and I understand this is the only Care centre which offers this.

Like you I made enquiries within the NHS and they said the wait could be upwards of 2 years due to the COVID backlog at St Guys London and felt we couldn’t wait this long. All of the fertility side of the treatment can be done at a satellite clinic, which for us would be Leeds but I understand the egg retrieval, genetic testing and implantation is all done at St Guys.

If your eligible, the NHS will fund up to 3 cycles at Care and they use CooperGenomics for the genetic testing side of things.

We are hoping to start treatment soon, fingers crossed! 🤞🏼

Hopeful19
Posts: 6
Joined: Sun Jan 10, 2021 1:18 pm

Re: PGD NHS waiting times

#4 Post by Hopeful19 » Tue Jan 12, 2021 10:04 am

At the point we were being referred by the NHS we were also given Care as an option. I spoke to Avril the CD at Nottingham and had a couple of telephone calls to go over the process and timescales so would recommend giving them a call to arrange that as it was really helpful.

Timescales at Care were months rather than years, although I know it can depend on a few things, but that made the decision for us really. We are lucky that at this stage we are eligible for NHS funding even with the treatment done at Care. Hope that helps! I guess you are trying to find out as much as you can at this stage? It’s good to talk to someone going through the same, let me know if you have any other questions 😊

Hopeful2021
Posts: 119
Joined: Sat Apr 18, 2020 11:39 pm

Re: PGD NHS waiting times

#5 Post by Hopeful2021 » Wed Jan 20, 2021 11:32 am

Hi both,

I thought I may jump in.... can I ask where you found out it would be 2 years wait on NhS for PGD funding?

So I have been under care Nottingham and after recurrent miscarriages during ivf I was investigated and found to have a BT in December 2020 and in the first week of Jan 2021 I have been referred to a geneticist at Birmingham hospital... which I am not sure the wait time and will be chasing next week.

I was told would be a max 3-6 month delay before I could start IVf by my consultant at care - maybe this is because I am already with care Nottingham (so not having to wait after seeing the geneticist and getting funding to wait to be referred to a PGD ivf centre on the NhS as I am already under one)?! Who knows

I did have a call with my consultant recently who advised financially better for me to wait for funding - although the wait is agonising 😔

Hopeful 19 did u apply for nHS funding for PGD via a geneticist? So exciting sounds like you are due to start soon :).

Xxx

There’s not much out there regarding PGD or times lines or anything so I think group is helpful for the few of us needing it

Hopeful19
Posts: 6
Joined: Sun Jan 10, 2021 1:18 pm

Re: PGD NHS waiting times

#6 Post by Hopeful19 » Wed Jan 20, 2021 9:52 pm

Hello Hopeful2021

Of course, it always helps to talk with others in a similar situation, sorry it’s not been successful for you previously, with the right investigations and tests you will be in a better position for next time I’m sure.

The 2 year wait for treatment at St Guys came from talks with a genetic counsellors at both Manchester and Leeds. In normal times, i don’t think it takes half as long, but I was told there were big backlogs at St Guys as this is the only NHS centre which can test. This was back in October so I can’t imagine it’s got any better recently.

The genetic counsellor then referred us to Care being our chosen centre, i believe it’s a lady in Care admin applies for the NHS funding.

I know how you feel, it’s such a waiting game! We are currently waiting for an appointment for pre conception counselling within NHS so will also be chasing this up soon too!

Hopeful2021
Posts: 119
Joined: Sat Apr 18, 2020 11:39 pm

Re: PGD NHS waiting times

#7 Post by Hopeful2021 » Sat Jan 23, 2021 9:04 pm

Hi hopeful19

Thanks for your reply..‘I don’t think there’s many of us in this situation on this forum...

I have been with care Nottingham so already under them and I only have good things to say about the consultant there that runs the pgd side
Of things :)

I am waiting the geneticist so going to chase that- was referred to Birmingham women’s hospital genetics department ... fingers crossed I have a date for that


You need a pre conception counselling session too?? I thought the geneticist would have gone through that- will that be at care too then?

Have you had an apppitnment with care yet?

So nice to speak to someone going through it all- although I am truly sorry you are going through it- not nice
Or easy at all! Xxx

Hopeful19
Posts: 6
Joined: Sun Jan 10, 2021 1:18 pm

Re: PGD NHS waiting times

#8 Post by Hopeful19 » Sun Jan 24, 2021 2:48 pm

Oh that’s really good to hear about the consultant ☺️...could I ask if you are registered under Dr Francis too then?

Hopefully it won’t take long to come through, I don’t think there is a big wait for the genetic councillors it was more for the treatment.

We had a meeting with a genetic councillor which was more around the risks of the genetics side of things and care have also asked for us to have pre conception counselling at Manchester before starting any treatment too which I think is more about the risks of having a pregnancy whilst carrying a genetic condition I think! I am going to ring them tomorrow to see when this might be.

No I haven’t had any consultations at care yet, would hope to have them in the next couple of months though. They mentioned family members having to take cheek swabs too in order to build a test so we still have that to do too. You said you only discovered you carried a genetic condition in December? Was that found out at care? Don’t feel like you need to discuss if you don’t want to though, I totally understand.

It’s definitely not an easy process at all and I’m impatient at the best of times haha but I am trying to keep positive, we don’t have any children so just hoping the fertility side of things is all ok too 🤞🏼 Have you any children? How many cycles of treatment have you had already if you don’t mind me asking?

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