PGD NHS waiting times

[rachdesign1]

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]

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]

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.

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]

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]

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]

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]

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]

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?

[Hopeful2021]

Hi hopeful19

Sorry for the delayed reply I’m not on here as much...

Yes I am under him too he’s fab!

So will you have your preconception counselling at Manchester genetics department? Or that somewhere different?

Happy to share my story
So I have been ttc for 3.5 years now. I went for tests all came back normal then referred for ivf april 2019 with NhS funding, my area would only fund one round. I had my first round at nurture in Dec 19- failed jan 2020. During this cycle I got two day 5 blastocysts.

Was due to start second round but covid happened. Nurture shut down very quickly right before I was about to start my stim injections so I moved to care who advised they couldn’t start a new cycle but were happy to do a frozen transfer. My lining was rubbish but long story short I asked for transfer anyway, dr Francis was my consultant from the start here.

Another round (my secon, privately funded) was in June 2020- July 2020 got two blasts again but they were top grade so was really happy, transferred one got my First BFp unfortunately ended as a chemical pregnancy. Second frozen transfer Oct 2020 again ended as a chemical pregnancy.

Dr Francis advised we go investigations for the recurrent miscarriages and I’m so glad he did - he said wait for nhs for this but being impatient and the fact that no where was holding the clinics due to covid meant we paid for the tests with cate privately - that’s how I found out I had a Balanced translocation causing my recurrent miscarriages. So in decmember dr Francis referred me to a geneticist to get NhS funding for ivf and PGD....

I’m happy to say I finally got my geneticist appointment in Feb so fingers crossed the ball can start rolling

How long did your funding take to get approved after your genetic counsellor appointment?

I guess I was lucky I ended up moving to a clinic that was a PGD centre so I’m already under them and am known to them .... I know there can normally be a wait to be seen on NhS but the clinics ..... xx

If u have any questions please do ask

I don’t have any children yet so hoping 2021 can bring some luck!

[Hopeful19]

Sorry for the late reply! Work has been so busy over last couple of weeks but it’s kept my mind occupied I suppose!

Oh that’s good to hear about the consultant! We haven’t spoken or met with him yet so that’s good

Thank you for sharing your story, im sorry to hear it sounds like you have had an emotional rollercoaster over the last few years, although the highs of having good quality blasts last summer is something really positive for next time!!

Although it’s a rough ride for us, I find it really helps to speak to others going through a similar thing so thank you. It’s all pretty unknown to us at the moment and I don’t have any friends / family who have been through similar.

I haven’t had the counselling appointment through yet, i was told it could possibly be a telephone appointment which would be better to help speed up the process, so will see. Just eager to get started as I know it’s not the quickest process and worried that my body clock is ticking!

I’m not sure what stage the funding is yet either, I will make some enquiries this week.

Wishing you lots of luck this time round, as you say it’s seems like you’ve found the best place for the treatment and hopefully it will be our year! Keep in touch xx

[rachdesign1]

So sorry for taking all this time to reply to you both. So glad we have a group now where we can share what we are going through.
I am waiting for a call back from the genetics team at st Mary’s in Manchester to confirm the wait time for us and see if we can use care instead.
We have actually already got one daughter who is now 7. We actually had her through ivf at care Manchester but since then we have found out she has the same genetic heart condition as myself and therefore we can now be offered pgd through the NHS to prevent it happening again. We were told you get 3 chances to conceive using pgd.
It sounds like we are all at a similar stage of the process too.
xx

[Hopeful2021]

Hi hopeful19 - it really does help having someone to talk to and it seems there are a few of us! Hopefully we can keep talking on here and give each other the motivation we need with this long journey? I am happy to answer any questions at all... I remember starting the ivf process and feeling so alone but actually these platforms gave me comfort in being able to talk people going through it. And now I discovered I had BT the community is even smaller so I have felt quite alone since finding out as there isn’t much information on the timeline/what to expect etc

I hope we can be each other’s support!

Hopeful19 what’s your story if you don’t mind me asking? Did you know you had a genetic problem needing PGD?

Any update on ur funding or preconception counselling?

X

[

[Hopeful2021]

Hi Rachel

Thanks for setting up this group! So helpful!
Sorry to hear you are also having to go through this long journey how did you find out you needed PGD/ had a genetic issue affecting you if you don’t mind me asking? You don’t have to answer!

So nice you have previously had a successful ivf that’s got to be a positive- at least you know your body can do it

Have you had your funding approved and seen a geneticist etc? That’s great u r legible for NHS funding!! (Unlike normal ivf where they are stricter if you already have a living child)

As far as I am aware it’s onto care Nottingham that does PGD from all the care clinics (I could be wrong).

xxx

So sorry for taking all this time to reply to you both. So glad we have a group now where we can share what we are going through.
I am waiting for a call back from the genetics team at st Mary’s in Manchester to confirm the wait time for us and see if we can use care instead.
We have actually already got one daughter who is now 7. We actually had her through ivf at care Manchester but since then we have found out she has the same genetic heart condition as myself and therefore we can now be offered pgd through the NHS to prevent it happening again. We were told you get 3 chances to conceive using pgd.
It sounds like we are all at a similar stage of the process too.
xx

[rachdesign1]

No worries at all.

After having my daughter genetically tested for the heart disease I have we were then told by the genetics team at Manchester that we could be eligible for pgd for any future attempts to get pregnant. This is due to the fact that we now have a living child with the disease and to reduce any further risk of other children having it. The chances for any future children getting the gene is 50% so fairly high.

The genetics team are now finding out waiting times for all the different NHS facilities including the private clinics that offer NHS funded pgd. She is going to come back to me this week so hopefully tomorrow and will let you both know when I hear.

I was told that first step after we decide which clinic we want to go for is to arrange a consultation at the clinic and they will arrange all the applications for funding.

Not sure if either of you are past this stage yet?

Take care xxx

[Hopeful2021]

Hi Rachel

Hope u hear this week fingers crossed! So good they tell u the waiting times!

And amazing u get funding! This process can be so expensive!!!

So I’m due to have my generic counselling appointment Monday then I think they apply for nhs funding?! Once funding secure and agreed I can start treatment at Care!

Fingers crossed not much of a wait for consultation then to get going! Xxx

[rachdesign1]

Yes they will apply for the funding for you.

My genetic counsellor has been amazing and has found out all the wait times for me. Nottingham and Leeds were over a year wait for the NHS hospitals.

Unfortunately care Nottingham have said that they wouldn’t offer my pgd as I have a heart condition with a defib fitted and as it’s a remote site they couldn’t ensure my safety when I have egg collection. We are going to back to them though as I have had it before at Manchester care with no issues.

I have started a referral for guys London with a 10 month wait to embryo transfer which isn’t as bad as I thought.

I would prefer care as the wait time is even shorter and I’m comfortable there but will have to see what they say.

Good luck for your appointment on Monday! Exciting to get things started! Xx

Hi Rachel

Hope u hear this week fingers crossed! So good they tell u the waiting times!

And amazing u get funding! This process can be so expensive!!!

So I’m due to have my generic counselling appointment Monday then I think they apply for nhs funding?! Once funding secure and agreed I can start treatment at Care!

Fingers crossed not much of a wait for consultation then to get going! Xxx

[Hopeful19]

Hello both!

Hope your both ok? Sorry it’s taken a while to reply, just been catching up with your messages.

Sorry to hear your little girl also has your heart condition, hopefully this can be managed and kept a close eye on now you are aware.

10 months sounds great though...much better than the 2 years they said originally. I’ve heard and read lots of good things about St Guys too so I’m sure you’ll be in good hands.

The reason I am having PGD is also to avoid a genetic heart condition too. Touch wood, I am only a carrier and I have annual scans and check ups to keep an eye on things. There is a 50% chance of passing it on though so that’s why we have chosen to take this route.

We have the pre conception counselling next week, all being well and Care is happy to take me on as a patient, I’ve been told the next step is funding which I’m told shouldn’t take too long, then a consultation.

Have you any updates hopeful2021? Did you have your genetic counselling appointment on Monday?

[Hopeful2021]

Hi both

Hope you are both keeping well!
Rachel hope care accept you! Like u said care Manchester did your first IVF!

Yay glad ur preconception counselling is next week hopeful19! Seems like the ball is rolling for you

I had my genetic counselling Monday they have given green light that I’m eligible for funding so have written back to Care but the person in charge of them applying for funding is on leave lol so I’ll chase next week- hopefully they can update me and then send me to Cooper genetics for a consult with them! Lots
Of to and froing!

Keep us updated hopeful19 and Rachel!

Hopefully we all get treatment this year! Xxx

[Hopeful19]

Hello!

Hope your both well! Sorry it’s been a while since I have posted, been keeping busy with work and then at weekends having long walks or doing bits of decorating... I always seem to be busy even when we can’t do much!

Where are you both up to in your journeys?

We have had the pre conception counselling, the cardiologist just wanted to check something with my usual doctor, then would be happy to give us the green light with care...eventually!

Nic at care said the funding doesn’t take long to come through so hopefully things will move along this month

[Hopeful19]

Also another thing I have been thinking about is the covid vaccine and how this will time around treatment? It will be a few months yet until it’s my turn for the vaccine but I can’t help but think that these things are going to come at the same time

[Hopeful10]

Hi Ladies,
I hope you don't mind me jumping in. I haven't been on here in ages. It's good to see some other 'hopefuls' and a few new PGDers. Great to have others in a similar situation to share the journey with. Timescales may be different now, especially with covid but thought it might help to share our timescale.
Our journey started a few years ago now. We knew we wanted PGD and basically asked out Genetics clinic to refer us. Paperwork complete in Nov 2017. First appointment with consultant in March 2018 and with PGD Counsellor with Care a couple of days later. Posted treatment consent back a couple of days later. Phone call from Genetics a couple of weeks later. Then sent DNA kits which were completed and sent back and test had been made in around 5 weeks later and arrangements made to start first treatment cycle. We were on the long protocol so this takes longer.
We essentially got two healthy blastocysts from our first egg collection. Had difficulty getting a thick enough lining so ended up stuck at this stage for ages whilst we tried different things and had some tests to look into this. Got a BFP from our first transfer but had a missed miscarriage at around 10 weeks which was really difficult and took us some time to recover from. The second blastocyst was a BFN. Needed to have another egg collection. Then covid hit! We were fortunate to be able to get going as soon as clinics were able to open. Got 2 healthy embryos again. Put one back in October and got a BFP. We were really cautious because of what had come before but things seem to be progressing and we're now 26 weeks and just hoping for our healthy miracle. It's a hard path but it will all be worth it in the end if we are successful.
Hope this is in some way helpful to you. We started ages ago so timescales could be very different now. Care apply for NHS funding for you prior to each round. Hoping you all have a smoother and much swifter run of things than us. Happy to help if I am able to x

[Hopeful19]

Thank you for sharing your journey hopeful...it’s certainly a common name here with us all ultimately hoping for the same thing.

I’m so sorry to hear of your miscarriage, life can be so tough.

As we are very much at the beginning, your successful result at the end does help to keep me positive though.

I assume you are under Care Nottingham? Are you also under the care of Dr Francis?

Was there anything aside from your treatment which you think may of helped with your BFP? I want to do all I can to help the process, which feels very much out of my control, so I want to feel like I’ve done all i can to help it. We have both recently started taking the pregnacare pre conception vitamins.

Do you mind me asking how old you all are? We are both 30 and hadn’t really considered my ticking fertility clock until we had decided to go ahead with PGD...sometimes wishing we had started the process earlier although unfortunately we can’t rewind time!

[Hopeful10]

Hi Hopeful19,
Remaining hopeful throughout the journey was probably the biggest challenge, especially in the toughest moments. It will all be worth it in the end though. I saw your reply on the other thread too so will respond to that here too.
We were under Dr Francis at Care Nottingham. Like you we aren't local (3.5 hours). Initially during our treatment we managed to get our local NHS clinic to do some of the scans and monitoring so just had to travel for the major appointments and procedures. However, after covid came along we had to Nottingham for all of our appointments and scans. It was because of clinic capacity especially with social distancing measures. We were just so happy to be able to progress through treatment when clinics opened that we managed it. As CharB says, it can be tricky managing work around it all and is so much easier with a supportive boss. The traveling back and forward every few days was tiring though before egg collection.
I completely relate to that feeling of endless waiting. I was driving myself up the wall with it! Best if you can learn to focus on the moment and find plenty of other stuff to keep yourself busy and happy. It's so very difficult but this new mindset has helped me cope with treatment and pregnancy. It's one wait after another throughout! And certainly not saying that I manage well all the time!!
I'm not sure that I believe there is much you can do to help with the BFP. Perhaps focus on being as healthy and happy as you can. Try to make sure you're a healthy BMI. We tried to eat healthily, focusing on 5 fruits/veg a day. I just took and continue to take folic acid and vitamin D. If you are on the pill, I would suggest coming off it to give your body a rest. See what your initial tests show and see if Dr Francis suggests anything.
I'm now 37 and will be considered a geriatric Mum!! I have certainly wished we started this journey earlier but you can't turn the clock back so what can you do. At 30 you're still young though. It also needs to be the right time in life so you are ready to take it on. Hoping you will hear about an initial appointment soon x

[Hopeful19]

Hi Hopeful19

It’s been a couple of weeks since your message, I hope things are all good with you and bump.

Thank you for taking the time to message me, it really does help to hear from others.

We have our initial consultation booked in for next Tuesday...we had some initial scans and tests last week so fingers crossed for some positive news

Thank you so much again, wishing you all the best in the rest of your pregnancy.

Take care

[Hopeful19]

Hi both

Hope you are both keeping well!
Rachel hope care accept you! Like u said care Manchester did your first IVF!

Yay glad ur preconception counselling is next week hopeful19! Seems like the ball is rolling for you

I had my genetic counselling Monday they have given green light that I’m eligible for funding so have written back to Care but the person in charge of them applying for funding is on leave lol so I’ll chase next week- hopefully they can update me and then send me to Cooper genetics for a consult with them! Lots
Of to and froing!

Keep us updated hopeful19 and Rachel!

Hopefully we all get treatment this year! Xxx

Hi Hopeful2021

How are you? I hope things have been progressing for you? Would be good to catch up with where are you upto? Did your funding come through ok?