# Please help - how many FETs are funded by NHS?



## couple (Apr 3, 2012)

Please help - how many FETs are funded by NHS?
We are patients at Liverpool Women's Hospital, living in Wales, we received a letter last year saying we would be funded by NHS for two cycles of IVF treatment. Went ahead with first cycle in the summer, collected over 30 eggs in August 2015 and hence transfer was put off for my body to recover for a few months (over-stimulation). We were lucky enough to have 12 great quality day 6 blastocyst embryos frozen from that cycle. Unfortunately the first and second single frozen embryo transfers have both failed. These are natural frozen embryo transfers - no meds or hormones taken. I was getting ready ready to book in for the third one - thinking we will just go through all our embryos until we get lucky, hoping third time lucky, hoping to save some for future child number 2 maybe... I have had the consent form from the nursing team posted as usual. Got my ovulation kit ready to start testing on day 10 this weekend so I can phone in with ovulation, transfer eing 6 days later. But today we got a letter from the hospital in the post which is really confusing, and frankly upsetting. And at this point we are really confused. It was our understanding that NHS funded cycle of IVF treatment would include the transfers of all the embryos from that cycle? All covered by NHS? Is this true or not? I ask because without explanation, the letter says the following: "I write with regard to a decision that your Clinical Commissioning Group (CCG) has made in respect of frozen embryo storage arrangements here at the Hewitt Fertility Centre. Their policy states that they will only fund the storage of embryos for a maximum of one year. Should you find yourself in this situation, storage and treatment can be continued on a self-funded basis. The cost for three years embryo storage is currently £540 and a Frozen Embryo Transfer is £1150-£1300 per cycle depending on whether medication is required." The letter goes on about whom to contact to ask questions. Since it is Friday night and no one available to ask, I have just cried my eyes out dreading that this means any more FETs would have to be funded by us. Since two didn't work out, (and nor did our 3 prior IUIs), I am really worried that if we now have to pay to use the remaining embryos from our first IVF cycle, we will simply be unable to use them, as we can just about afford to pay for one transfer. Does anybody know hos this works? Anyone else out there funded by NHS having FET number 3, 4, 5, etc.., without having to pay? Please someone tell me all embryos from this cycle should be transferred without a cost. Otherwise I will have to accept already now, before we even get chance to use them, that we might not ever have children, due to lack of money...


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## Cloudy (Jan 26, 2012)

Hi honey, I'm really sorry you have got this letter  

Sadly no one can really answer this question for you unless they live in the same CCG area. You can find your CCG online and see what their funding details are. If you have a look on the IVF section there is a sticky about NHS CCG funding. Its probably advisable to email the CCG directly and ask them, and also ask them when a review of policy is due to take place.

In my area one only fresh cycle is funded but freezing is covered for 3 years and we are allowed unlimited FETs. Other areas only allow 2 FETs, in others its unlimited.

I know its hard, but really you are best to wait and see exactly what the CCG themselves say. Even ladies at the same clinic may be under different CCGs and under different rules.

With regards to the money, if you have to pay for the 3years storage, £540 is quite reasonable in comparison with what other places charge, but its always worth seeing what different clinics charge because you can move your embryos to different clinics (although would have to arrange to courier them yourself and probably pay and extra admin charge).

Good luck and try not to get too upset yet, it seems to me that they are just reiterating the policy, or a change in freezing policy.

Xxx


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## Carrie88 (Aug 2, 2015)

It's different everywhere I think. I'm sure Wirral is 2 funded cycles and Liverpool is 3 and that's just across the Mersey!  Try and not let it ruin your weekend Hun, like you said you can't do anything now because they are closed. Fingers crossed you get all your answers on Monday xx


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## Katie791 (Nov 1, 2013)

Hi couple,

Sorry to hear you're upset. In our area we only get 1 funded cycle and if you have Frosties (and the fresh cycle didn't work) then you get 1 funded FET. If it did work, which we know we were so lucky to be in that position, then any FETs are self funded. 1 year storage for us was £250 so as cloudy said, actually that price for 3 years is better than a lot of places. I know that probably doesn't come as much comfort though. It unfortunately does sound like any further FETs have to be self funded from what you copied and pasted. 

Like the others have said though, you need clarification on it just to make sure. Hope for your sake that you get more funded cycles xx


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## couple (Apr 3, 2012)

Thank you ladies for your replies. As hard it is, you are right I will have to wait and see what they say when I phone them on Monday. I is completely unclear from the letter if that cost information is there as a  'standard' just for information for the future or if it is to apply to us right away. The clinic never said anything about money or cost when I phoned with the Day 1 (period) to notify them the other day and when I said I would like to do transfer Number 3 this month, they sent out the consent form too, but then again who knows if it is the nursing staff's job to talk about money at all? Fingers crossed, I do truly hope frosties from this first IVF cycle will be transferred for free. Thank you for helping me pass this horrible uncertain waiting time.


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## Herts85 (Oct 10, 2014)

Hi Couple,

I know you've had a few responses now and as people have said you really need to see your own CCG's policy to know what is covered. I'm in Hertfordshire and we get a maximum of 2 fresh IVF cycles or 4 transfers (inc FET) depending on the situation with frosties. Storage is funded for one year then I think it's £375 per year at my clinic. 

Hope you find out the answer soon x


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## couple (Apr 3, 2012)

Thank you Herts. Any idea how you find out who your CCG is or what their policy is? I just dont understand why no one would have mentioned anything about any costs when telling us of the incredible result in getting 12 blastocysts from one cycle. They were all just saying oh haven't you done great! Well it's not that great if you can only use two of them...? :/


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## Lilly83 (Jan 19, 2012)

My CCG is Oldham near Manchester and its 2 frozen funded then you pay for any more after that but it's not the price of a full FET privately I think it's £450 set fee each transfer x


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## couple (Apr 3, 2012)

Thank you Lilly. I've just out our postcode in the CCG search and it says there is no CCG for our area (we are in Wales, are there none here?) your CCG's prices seem more acceptable!


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## Lilly83 (Jan 19, 2012)

Does it come up if you search PCT instead of CCG? It used to be primary care trust before it changed to clinical commissioning group a few years back, maybe that's just for England and you are still under a PCT? Same concept just different name? Xx


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## Cloudy (Jan 26, 2012)

Hey honey - If you are in Wales then it's slightly different as you come under NHS Wales rather than a CCG (like in Scotland and Northern Ireland where there are also no CCGs). The best thing to do is contact the clinic on Monday and they should be able to provide you with the right information, if not your GPs surgery. You could ask on the Wales regional board and see what the ladies there have received.

Good luck xxx


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## couple (Apr 3, 2012)

well I think I have just found it! on Liverpool Women's Hospital's Hewitt Fertility Centre, under funding options, then NHS, then Wales, it says The policy is set by Welsh Health Specialised Services Committee (WHSSC). Pays of staying up til 1am on Friday night researching things ... on WHSSC' website there is a downloadable document for fertility services.... and on there is says: 
A full cycle of IVF treatment, with or without ICSI, should comprise 1 episode
of ovarian stimulation and the transfer of any resultant fresh and frozen
embryo(s). This will include the storage of any frozen embryos for one year
following egg collection. Patients will need to be advised at the start of the
treatment that this is the level of service that is available on the NHS and
that the NHS will not fund storage following this period. Patients must be
counselled, and agree that storage of any frozen embryos following this
period will need to be funded by themselves, or allowed to perish.

I read that as all embryos should be transferred as part of the NHS funded cycle, but after one year, storage fee must be paid for. Dear god I do hope this is the truth. And if its is, I hate them for sending that horrible letter quoting fees for self funding further FETs!


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## Mogster (Nov 1, 2012)

It really is a postcode lottery isn't it. So unfair and so confusing for people. I hope you have it sorted soon so you can make the right decision for you. 

Ours was clear from the start and we were only allowed 1 cycle and freezing for a year. Any FET or future cycles had to be paid for. 

Good luck x


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## couple (Apr 3, 2012)

Thank you Mogster. I just don't understand why a clinic would charged for FETs from first cycle of IVF. In so many documents I have read the definition of 'a cycle of IVF' is stimming, egg collection and transfer of sll embryos from this cycle... I guess I will be wiser tomorrow...


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## couple (Apr 3, 2012)

Hi, for anyone wondering and to give this thread a closure, I phoned the clinic and found out that all frosties from first cycle are free of charge to transfer on NHS until live birth is achieved. (same with second cycle of IVF) What a relief. The lady agreed their letter could have been worded differently, and we found out the clinic somehow 'forgot' to send us an important 5 page document last year explaining in detail what is and what is not funded on NHS. It was meant to be attached to a letter we received back in April, apparently. I wish we had had that document as it would have saved all this worry. The cost of over a grand per FET they mentioned in their new letter apparently refers to the cost of using stored embryos for a second child (why on earth send us that?!). Anyway, good news after all, and hope this helps someone one day in a similar situation!


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