Feeling let down

Feeling let down

We had a follow up appointment with the clinic yesterday. Before treatment I read up on the local CCG funding to see how many cycles we'd get; one. However due to the way it's worded we believed our one cycle would include any viable frozen transfers. Yesterday we were informed this is not the case. So now we will have to use our savings and also scrimp and borrow where we can. I provide a picture of documentation; just out of interest I'd like to see if anyone else would have made the same mistake in reading it..

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  • Hey,

    I can't believe your having to pay for a frozen cycle. That doesn't seem fair at all.

    When I read that to me it sounds like it's saying fresh and frozen embryos should be used before its classed as 1 cycle. It's very misleading xxx

  • I read that the same as we had but we had 2 fresh cycles BUT told any frozen embryos after each fresh collection are also included. ? How can they say its not including frozen when it says frozen? x

  • I would defo question this further or maybe with someone in authority at your clinic as it clearly says including frozen. I had 2 cycles on the nhs which both included any frozen ones (we never had any but the option was there) xx

  • The nurse we saw at our appointment yesterday read out the original letter we received from the clinic re; the funding and it did sound like they were saying in that letter that the cycle only included storage of frozen embryos but I admit I must have skipped over that part!! Anyway as she has nothing to do with the finances she was going to speak to head of finance and ring me back tomorrow or Thursday.. I can't see how we could change this if it's all down to the way it's worded. If this is indeed the case then it seems the CCG guidelines need to be much more clearly worded; perhaps instead of saying "and any frozen embryos" they should have said "OR any frozen embryos" 😡

  • Hopefully she will speak to someone and it will go in your favour x

  • I hope so too! Won't hold my breath we haven't had much luck lately with one thing and another 😕 X

  • it says fertilisation and transfer of any frozen embryos?? id kick off! worth a try!

  • I've emailed the clinic myself and the CCG but no response from either so far

  • I'm glad that others understood it to mean that frozen embryo transfer was included and not just me, I was beginning to feel like such a fool 😕

  • Your definitely not a fool! The wording is totally wrong if frozen isn't included in your cycle. It's something they definitely need to sort out.

    I hope you manage to get things sorted and I hope you might have some luck in appealing for it xxx

  • Thank you. We all face enough blows on the road of infertility without them being addded to 😞 X

  • Your right. It's a difficult enough situation without things like this coming up as well. Xxx

  • i deffo read that as the frozen ones are also included i would deffo question it. some of the nurses can be really hard faced. good luck with everything i hope you get it sorted.xxx

  • She was perfectly pleasant but I know what you mean. At the end of the day they are a business and they are in the business of making money 😕 X

  • yeah they certainly are im sure you will get it sorted out think positive :) xx

  • Thank you. If not we'll just have to find the rest of the money from somewhere.. x

  • its horrible to think how much money they make from people that struggle to have children. good luck! xxx

  • I'm only grateful that we are able to go down the fet route, that we have 4 healthy blastocysts waiting and it's going to cost about 50% less than a fresh cycle! X

  • yeah very true it will all work out dont let it get you down.

    xx

  • out of interest I looked at our areas (Somerset)

    Section A - Principles for All Patients

    1. One cycle of NHS funded in vitro fertilisation (IVF or ICSI) will be offered (a full

    cycle includes the transfer of frozen embryo(s)) where patients fulfil the criteria

    .

    We were 'lucky' as this new criteria came in this year and we got funded before this came in and got 2 gos. (currently on witing list for DE been A YEAR!!) so went abroad but had a chemical going again in Feb 2017 cant keep waiting for NHS there are still 20 people above us on the list so we need 10 donors to walk off the street and donate eggs?!

  • That ⬆️ is more clearly worded I'd say.. Maybe with our CCG what they're saying is that for whatever reason if we didn't have a fresh transfer and had to have our embryos frozen that we'd get one or the other but not both. Am I making sense? If that's what they mean it should be better worded because it's been a real kick in the teeth to be told we have to pay now X

  • we were also told we would get frozen goes if we had any covered under one fresh cycle. Its so rubbish all of it :(

  • How are you blondybooxx? Glad to hear you're going again is it booked?xx

  • No you book when medication starts so December. I'm good I'm just concentrating on that xx

  • That's great. I'm in a bit of a quandary over what to do next. My period is surprisingly nearly 4 days late so hoping this will be our time probably not but it's unusual. I was starting to think more about adoption rather than egg donation. Think I know what I want then it changes! !xx

  • I agree, it definitely reads including frozen! That's really bad wording on the guidelines if this isnt the case or is your hospital trying to be fly and have you fund the frozen transfers because money is tight. Definitey push for a proper explanation!x

  • It's a clinic. It's one of 7 in the West Midlands and is rated top. X

  • You're lucky you get freebies. Where I am you don't, with the added stress of having to get a flight to the UK once I have done the trigger shot. I do agree it is poorly worded and you absolutely question it!

  • Some areas do three cycles. Funding should be fair. Thank you and good luck in your journey 🍀

  • With my clinic any frozen Ines you get transferred included in the free go . My friends on her 3rd transfer still all included and she's at a different clinic to me. You don't need to pay for drugs and egg collection this time so what are they charging you for? I don't know why it's different at your clinic how strange . I have to pay as I have to start from the beginning again because I had no frozen ones.

  • I'd have to pay for the scans, bloods, transfer (meds to support lining) which has been estimated at about £1500.. on top of that either way, we are opting to pay for embryo glue @ £125. They have recommended a scratch which I think is about £250 and tests to determine why I seem to have implantation failure @ £800. x

  • And I've been recommended a "natural" IVF cycle this next time..

  • It should be the same in all clinics it's not fair. In some postcodes you even get two free goes. I don't have my follow up until 3.11 which is almost a month after my negative result . Good luck with everything x

  • And some get 3 😕 Great for them but not so great for us. Good luck to you too x

  • Just to say Tugs that this seems quite expensive for a natural fet cycle to me... I certainly didn't pay anything close to that for mine ... may be worth shopping around for the next cycle? Just a thought though hope this gets sorted in your favour s you don't need to xx

  • How would that work when the clinic have our embryos? x

  • I suppose I was thinking that if they are frozen then they can be transferred somewhere else? Although nothing in this process is as easy as it could /should be so probably not! It's all so cruel to have to deal with this 9n top of everything else x

  • You are so right! x

  • hmm, looks to me as though you should have all viable frozen embryo's too. The fertility fairness website also says the same for Herefordshire CCG. Is Hereford your GP location? As that is what it is based on, not the CCG of the fertility centre...

  • I know, the fertility fairness website actually says "and ALL viable frozen embryos" I don't know if it's out of date or?? My GP is in Herefordshire not actually in Hereford x

  • is your GP a different CCG to your clinic? My GP was one CCG and the clinic in another, the funding is from your GPs CCG not the clinics one... Not sure if this varies in your case?

  • This is why it was such a kick in the teeth to hear yesterday "You know that you have to fund the next treatment yourselves don't you?" I started to cry x

  • embiemomma No, I believe it's the same. Our GP referred us to Hereford hospital initially and Hereford hospital made the referral and filled in our application to the CCG x

  • We had our own upset with ccg guidelines. We were told by a fertility consultant we were eligible for 1 ivf cycle, but when the clinic received the referral, we were told we weren't due to slightly high fsh. It was so upsetting and unexpected, and when we read the guidelines, the wording in the eligibility criteria suggested we were eligible! After 2 complaints and referring it to the ombudsman we still had no luck in getting overturned. Really hard when you hadn't expected to get the money together and when you know others are getting funded. I'd still recommend challenging this as wording does seem to suggest it's included and you might get lucky, but be prepared for it not getting you anywhere too. Xx

  • It's difficult isn't it? I would fear huge delays in starting our next round especially if we get the same outcome as you x

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