[mb2512cat]

I noticed that there are always plenty of queries about PGD funding from new members who want to know how the system works. I remember when I was first getting my head around the fact that PGD was now an option for us, finding out about funding was one of the issues that seemed like an impenetrable forest. So I thought it would be good to start a thread for those of us who have already gone through it to share our experiences. Were you eligible for funding? Did you apply? How long did the process take? Were you successful? If not, how did you fund it? You don't have to mention your PCT by name.

This might be a handy template for newbies to grab the essential info:

PGD Condition: Balanced Translocation
When did you did decide to pursue PGD?: September 2011
Did you apply for NHS funding? Yes
Time taken: from my diagnosis of BT to starting IVF, just over nine months. For the actual application, I heard back in about three months.
Application successful, yes/no? If yes, how many rounds were you approved for? Yes, approved for one round.
If you funded the PGD personally, how did you do this? n/a (so far)

Fuller details:
After four years during which I had a miscarriage and two pregnancies that developed abnormalities, I was diagnosed with a balanced translocation in September 2011. We told our NHS geneticist we wanted needed to do IVF/PGD and she recommended Guys in London. However, when we got a letter giving us our first appointment with Guys, it wasn't going to be until December. I wanted to see if I could speed things along, so, on my behalf, my GP applied to our PCT's special circumstances panel (our PCT stopped funding normal IVF a couple of years ago). We eventually got a reply back in early 2012 saying that they were the wrong panel to apply to and that anyway the application would have to come from an NHS PGD place like Guys.

Our initial appointment with Guys in December was a mutual 'is this ok for us/are they suitable for what we can offer'-type meeting. When we said we wanted to go ahead, they sent us forms and which we signed and sent back. Then we both gave blood for the 'probes' to be developed in January. We were told they would take 8-12 wks to develop, and they did take three months in the end. Then we got an appointment with the Assisted Conception Unit in April. Now we are due to start IVF at the end of June 2012, with a view, if it goes ok, for egg collection early August. In terms of the funding, Guys applied for us in early 2012 on the understanding that we would fund one round if the PCT didn't come back in time or rejected us. In the end, our PCT agreed to fund one round.

UPDATE JUNE 2013: Changes to UK PGD funding mean that we have been granted a further two rounds of PGD. [so far we have had one on the NHS and paid for one ourselves]

I hope this helps. Any great ideas, please let me know! Thanks

PS:
Resources for PGD:
This is the most comprehensive guide to PGD I have found online (either here or the US): http://www.pgd.org.uk/resources/pgdbooklet_main.pdf
List of conditions allowed to be tested for PGD in the UK by the HFEA: http://www.hfea.gov.uk/cps/hfea/gen/pgd-screening.htm
HFEA clinic search: http://guide.hfea.gov.uk/guide/AdvancedSearch.aspx
At a glance info about PGD clinics: http://www.pgd.org.uk/resources/PGDintheUnitedKingdom_October2011.pdf

This post contains an unconfirmed link/information and readers are reminded that FertilityFriends.co.uk or its owners are not responsible for the content of external internet sites

 

[AdoptionDreams]

Great idea MB!
PGD Condition: DH has a Balanced Translocation Y:6
When did you did decide to pursue PGD?: April 2010
Did you apply for NHS funding? Yes
Time taken: From 1st referral 3.5 years! Don't let this put you off we had many bumps along the way. Our probes also took 1 year to be made!Application successful, yes/no? If yes, how many rounds were you approved for? Yes, approved for two rounds on NHS.
If you funded the PGD personally, how did you do this? n/a (so far)
Fuller details:
We started trying to conceive in October 2008. After a year, we spoke to our Doctor and were referred for ICSI. After waiting two years with the hope that ICSI (Intracytoplasmic Sperm Injection) would be straightforward for us and allow us to conceive, we were due to begin treatment when we received the news that my husband has a Balanced Y Translocation (exchange of chromosome material between two or more chromosomes). This was a huge setback to us as it was yet another hurdle to get over and another delay to our dream of having a child together. We could continue with ICSI, which does not screen the embryos being implanted and would not reduce the risks for us in any way, or we could abort this route and opt for IVF PGD.

After a consultation with our Genetic Consultant she explained the challenges that our future child could face. We listened as she explained that our child had a 25% chance of leading a 'normal' healthy life. We were in total despair and our life crumbled around us. What was she saying? What does this mean? As we discussed it further the reality hit home - our child would probably have the following: blindness, deafness, poor mobility, breathing difficulties, growth problems ... the list goes on. Is this a life that we want for the most precious person in our world? Again this was another very difficult subject for us, we felt extremely guilty, we were realistically attempting to play 'god'.

DH and I know we are doing the right thing for us and for our child!

We recently completed our 1st round of ICSI PGD. However we sadly lost the twins we had concieved. It was a very difficult miscarriage. I had to be taken into hospital as it was making me poorly. Out of our 4 embryos that made it to biopsy 2 were 'normal' and the other 2 were 'abnormal'. This was a big eye opener to DH and I. How could we possibly take that chance for us and for our little baby?

We contunie to get stronger every day. We will keep going until we get our miracle.

If you want to find out more information about my journey please visit my blog - http://ivfpgd-hope2011.blogspot.co.uk/
xx

/links

 

[AdoptionDreams]

P.S

We had no problems gaining funding for IVF PGD. It is a bit of a postcode lottery though, we get 2 attempts but other towns get only 1 or 3. The hospital took to do with all the funding part, we only had to sign on the dotted line! x

 

[sharoon]

PGD Condition: I have a hereditary genetic condition. Don't want to pass it on.
When did you decide to pursue PGD?: First heard about it from a geneticist in Spring 2007. The ball started rolling then.
Did you apply for NHS funding? Yes (Guys did on our behalf)
Time taken: From first appointment with Guys in June 2010 we got confirmed news of funding in May 2011. We did get letters etc apologising for delay.
Application successful, yes/no? If yes, how many rounds were you approved for?: Yes, very very lucky. 3 rounds funded.
If you funded the PGD personally, how did you do this?: This is it for us. We could never afford to self fund.

It took so long for us I think because it wasn't easy to identify the affected gene, so the PGD test took the longest time to prepare.

 

[Meganlouise]

PGD Condition: DF - Balanced Translocation 6 & 20

When did you did decide to pursue PGD?: April 2012

Did you apply for NHS funding? Yes, after being initially turned down for funding for IVF we sent a very long letter (3 pages!) to our PCT. They came back with the criteria for PGD in our county.

Time taken: DH found out about his BT in 2006, (with his ex wife) they were granted 3 cycles of PGD on NHS but the marriage had already broken down. We applied for funding in April 2012, 2 weeks later we received a call to tell us we had got 1 cycle on the NHS - over the moon!

Application successful, yes/no? If yes, how many rounds were you approved for? Yes, approved for one round.

If you funded the PGD personally, how did you do this? n/a (so far)

Fuller details:
It's been a very very very long road for DF - almost 10 years of waiting for diagnosis, many miscarriages etc.
For me, the total time from first mc to nearly starting PGD is just over 2 years.

Megan xxx

 

[Chocolatebuttons]

PGD Condition: Inherited genetic condition - Fragile X - didn't want to pass on
When did you did decide to pursue PGD?: December 2010
Did you apply for NHS funding? Yes
Time taken: About three months from when the application was sent in
Application successful, yes/no? If yes, how many rounds were you approved for? Yes, approved for one round.
If you funded the PGD personally, how did you do this? n/a although I do know it costs £9,000 at Guys.

Fuller details:
I was diagnosed with Fragile X in 2004. As I wasn't thinking about kids at that stage I didn't investigate options until after marrying my husband in 2009. We started our investigations at the end of 2010 and were required to attend an appointment with a genetic counsellor as part of the process to be considered for NHS funding.

This appointment happened in January 2011. We then had to make an appointment with Guys hospital and that took about three months to come through. It was at this meeting we discussed the whole process - funding and treatment. Once we'd had that meeting we needed to confirm we were happy for Guys to apply for the funding on our behalf.

As we decided to self fund should we not be suitable for funding, they did all the blood work at the same time as the funding. This involved lots of form filling and sending off blood samples.

It took about three months for the blood work to be done. The funding however took longer. It short, it turned out that while Guys had sent the paper work to Wandsworth PCT, they hadn't received it. We only realised this when I called in early September to find out what was going on. We weren't in any hurry to start the treatment so hadn't chased… my advice - stay on top of your clinic where funding is concerned!!

It was then a waiting game of over another month before the PCT panel would review our case. We were then awarded one round of funding which we started in February of this year.

We are now very blessed to have a baby on board - 15 weeks old today. Fingers and toes crossed that all goes well for the rest of the pregnancy.

If you want to read more about my journey my diary is here http://www.fertilityfriends.co.uk/forum/index.php?topic=276712.0

Wishing you all the best of luck in your fights for a family xx

 

[-Susan-]

PGD Condition: Renal coloboma / Papillorenal syndrome (Pax 2 gene mutation). My husband has the condition.

When did you did decide to pursue PGD?: About November 2010 - and we contacted the genetics service directly, as they had already suggested the process to my husband a few years back, and he has their contact details.

Did you apply for NHS funding? I personally didn't, as it is all done for you in Lothian/Edinburgh for conditions approved for PGD. It seemed almost automatic, although I'm not too sure. You are given funding for one round, after which, if it is unsuccessful, they will reassess your situation and consider giving you a second round. Therefore the second round is not automatic, but from what I can tell they would be happy doing it as long as they thought there was a reasonable chance of success. Up to two rounds are funded by NHS Lothian. However, each 'round' includes using frozen embryos, if you have them, so you can get more than one transfer per 'round', increasing the likelihood of success

Time taken: I still haven't got to the stage of having the PGD. Likely it will take a total of about 2.5 years.

Fuller explanation - It has been a slower process for me because my husband's condition is extremely rare and wasn't already approved for PGD (it takes a few months to get the approval for new conditions), and now they're wanting DNA samples from two of his relatives for what they call 'assays'. I think this is when they study the faulty gene and compare it to relatives so they know what to look for when doing the PGD. For his mum, this isn't a problem because we know for certain she doesn't have the condition (he got it from his father), but for his sister who is giving the DNA, she hasn't been diagnosed either way so she is currently in that diagnosis process. They didn't take blood for testing at her initial genetic appointment because they wanted to give her the information about the testing and the potential consequences, and for her to go away for a month to consider whether she still wanted it. This will likely take about 4-5 months in total, including the wait for the initial appointment. The assays themselves generally take around six months. After that we're pretty much good to go, so hopefully we'll have started by this time next year.

 

[Onedaysomeday]

I am so pleased I got a call today from my local hospital to say im eligable for NHS funded IVF, worth the year and a bit wait! and they said our local PCT has added more funds or something and I got an appointment for saturday! this is such a big weight lifted as we had no idea about funding our next after 15k worth of debt so far with failed IVF since December 2011!

I know its not a magic wand and doesnt mean ill get pregnant but its a chance....

Anyway as I need to either have PGD or egg testing, I am praying they will fund this too, any advise on what to say and what NOT to say?

Im going to take all my paperwork and the letter from genetic councilor explaining the whole BT thing and last failed cycle.

xx

 

[mb2512cat]

Hopefully your IVF grant includes the PGD part; i guess you'll find out on Saturday... yes, do take along as much gumf as you can - you never know what piece of paper turns out to be the crucial one. Anyway, I hope it all works out for yoU!

 

[Onedaysomeday]

I will do and thank you so much xx

 

[cfb107]

PGD Condition: Balanced Translocation
When did you did decide to pursue PGD?: May 2011
Did you apply for NHS funding? Yes
Time taken: from initial referral to first appointment at fertility clinic, about a year. By the time we get to cycle, it will be about 18 months total.
Application successful, yes/no? If yes, how many rounds were you approved for? Yes, funding is complicated. We live in the East Midlands and provisionally have unlimited cycles funded. However, they review after two cycles: if we haven't produced 'good' embryos by that point, we are unlikely to get further funding.
If you funded the PGD personally, how did you do this? n/a. We wouldn't be able to afford even 1 cycle. If the funded cycles don't work, we're advised to look at donor eggs.

Further details: I have quite an unusual story in that I was diagnosed with BT at age 8. I had my initial genetic counselling appointment at 21. When I met hubby (23) we decided not to try naturally (after a lot of heartache on my part) but try PGD first.

 

[alliei80]

Hello!  I'm new here as just embarking on my journey but have been lurking for a few weeks and thought what I found out today might be of interest to you all.

We went for our first PGD appointment today at Guys and one of the things we talked about was funding.  The nurse we saw told us that there is a new report coming out on PGD and one of the things they are recommending, in order to make PGD funding fairer, is that all eligible couples should have three funded cycles.  If this recommendation is accepted this would then be rolled out across England (not sure about Wales, etc).  So fingers crossed!

 

[mb2512cat]

Thank you! We got one funded, so it would be great to have more goes in case the first one doesn't work. I will keep an eye out for the report.

 

[alliei80]

I managed to find the draft policy - you can take a look here:
http://www.engage.commissioningboard.nhs.uk/consultation/ssc-area-e/supporting_documents/e1policy.pdf

/links

 

[alliei80]

Thought it would be useful to put a link to the finalised policy up. Now everyone who meets the criteria will get three funded cycles of PGD.

This is for England only (although I understand Wales have just reviewed their policy and have a similar one in place):
http://www.england.nhs.uk/wp-content/uploads/2013/04/e01-p-a.pdf

 

[mb2512cat]

Thanks for that. Indeed, Guy's have just written to me saying I should re-apply because of the new rules. We got one go funded but another one or two goes would be appreciated.

 

[alliei80]

The policy says that even if you've paid for private cycles previously you should still get three NHS funded cycles so I'm sure you'll get an extra two.

 

[mb2512cat]

Have you got funded cycles?

 

[alliei80]

We're not quite at that stage yet but we meet all the current criteria as set out in the policy.  Just depends if they add more criteria, then we could be screwed!

 

[-Susan-]

Just wanted to add to this from the Scottish side of things - my consultant says funding seems to be staying the same in Scotland. That is, each LA sets the number of NHS funded cycles you can have, and I think it tends to be two funded cycles. I have heard the recommendations are being reviewed - but then, just because something is recommended doesn't mean it'll be implemented, particularly when money is tight.