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Fertility Network UK
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IVF - NHS funding question

My CCG funds one fresh an one frozen cicle

On the policy I read it also mentions that if we do a private cicle we loose our funding since the only fund 1 cicle? At least that’s what I believe it says.

Do you ladies think I interpreted this correctly? Was it the same with your CCGs?

My problem is that apparently the waiting time in my clinic is up to 1 year, so we were considering maybe going abroad and try 1 cycle before our NHS cycle, but we are unsure if that will make us loose the funding!

Any experiences you may have will be very welcome!

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I went private 7 years ago as I lived in wrong postcode and was under 30 so wasn’t entitled to nhs so we paid privately which was unsuccessful,

when I moved back to Kent I decided to try it once more and I went to the doctors and they forwarded us to nhs, we was at first told we was entitled to 3 goes but because in my history they see I had one private round they removed that from my nhs go and was told if I had any more private I’d lose my nhs, so we stuck we the nhs which took a year from test to operations and referrals, started my treatment July 2017 which was thankfully successful and I had my little big in March 2018 7 weeks early,

If I was you I’d hold out for the nhs free cycle and if that unfortunately fails you could do the private cycle rather than do private that possibly being unsuccessful and then you don’t have you free nhs cycle,

It is hard to wait but I’d found the nhs was so good they made sure your body was completely ready before you was allowed to startX

Wish you good luck what ever you choose to do x 🍀🍀🍀🍀

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Hi Leesalou!

Thank you for your reply.

Unfortunately that’s exactly what I’ve understood as well.

I wonder if I go abroad, if they would get any record at all of it at all... well, maybe better not risking it!

Congratulations on your pregnancy 😊😊(hope I am getting this right) hope everything is going well xxx

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I would imagine any reputable clinic abroad would write to your gp just as clinics here do, but someone else who has been abroad would be able to advise on this.

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I’m not sure how they would know mine only knew as I’d be the doctors and said and it was in my notes after me saying so,

Thank you I’ve had my son now he was born 7!weeks early

Should read my posts if you get the chance,

How far are you with the nhs have you been referred to a clinic yet as soon as that was done it moved really quickly x

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My first appointment was last Wednesday 23rd of May. I think that some clinics have shorter waiting list, but unfortunately mine seems to be quite long.

Will definitely read your posts 😊

All the best for you and your little one xxx

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It does come around quick

Good luck when you do start wish you lots of luck 🍀🍀🍀 x

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Also you would probably want the NHS to know about any unsuccessful treatment abroad as they can learn a lot from how you responded in previous treatment. Good luck xxx

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That’s a great point! Thank you xx

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I've not had treatment abroad, but as far as I know, in this country you have the form you fill in about who you want to know about your treatment. There are the tick boxes for - GP, other healthcare professionals, admin staff and auditors and there is even a box to say no one. On my private round, I ticked no one and as far as I'm aware my GP never knew until I told him about my private treatment and the same for my nhs consultant. Not sure how watertight it is, but you could always ask the clinic about their data protection, at the end if the day you should be asked how you want your data used. Good luck xx

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That’s interesting, my clinic didn’t have anything like this.

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That's also interesting because i signed the exact same form yesterday with the nhs clinic also. I will see if I have a copy somewhere and dig it out.

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I wonder whether I did it right back at the start and have forgotten about it. Although I had nhs and private rounds, and two clinics, both clinics were in the same chain so perhaps I just filled it in back at the beginning and just never got asked again.

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Thank you for your answer!

Very good points there.

I Will need to think carefully about everything you ladies are saying before making my decision xx

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Well there is no harm in asking any clinic how they use your personal data and whether they share this with anyone including your GP. The information clinics hold is very privileged and therefore you are entitled to know what is done with it and you are also entitled to tell your clinic how you want your personal data to be used xx

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From what I have read in the past, my understanding is that if you pay for a private round of ivf, you won't be entitled to any NHS funding.

Personally I would wait for your free go and then pay if you need to.. But hopefully you won't xx

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Hi Michelle.

I believe you are right...

We can just keep trying naturally until then, and pray for it to work ( it starts getting difficult to believe in that though...)

Thank you 😊

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I think all borough's must differ. I was told that only if I was pregnant via private ivf I would lose my 1 nhs round. Otherwise I still have my round left with the nhs.

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Hi Cryst4l,

Yes, it probably varies... everything about IVF seems to be different from CCG to CCG 😕

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I know, it does right. If you can wait on the nhs you might as well use the funding, then see how you go after. I had a few things going against me so I chose to go straight to private.

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My ccg allows up to two self funded cycles before an nhs cycle, then you lose your funding. It’s perfectly possible that your ccg won’t fund if you self fund- they have all sorts of rules to try to get out of paying for ivf. Maybe investigate whether you can self fund iui while you are waiting? Obviously if that’s suitable for your circumstances x

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They did mention IUI in our appointment and booked and appointment in September to discuss 😊

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Hi yes you are correct if you live in the UK and u get one or two on the NHS you can't go private as you will lose it if you have one in the UK and its not successful then when all your treatment is done then you can go ahead with the private clinic I was on the NHS a couple of years old and was told that me and my then partner would have 2 ivf Cycles but it broke us up and new I have to go to Greece as I don't fit the NHS criteria funding cos I am doing it myself. And it's the best decision I made. What I can also tell you is if you say to go private abroad then you will get no help from your GP as its the UK policy that they will not right up any prescriptions if I need any medication to help me hear that the doctor in Greece said I need I have to find a private doctor and that can cost for the consultation and prescription as I am finding out I hop this helps. X

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Thanks Amanda.

Best of luck for your journey xx

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No problem. It hard hard enough trying to work out the doctors and what they're say to you and in the letters it's like trying to decipher and cod best of luck on your ivf journey xx😊

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Hi

That’s exactly why we were told. We would lose a place on the NHS and it would be a years wait.

We were put on the list on June 6th and we commenced treatment on 22st of March so nowhere near the years wait.

When I found out it was going to be a year that’s when I crashed and really struggled to cope. Have to to try hard and put it in to perspective, just 12 more pay slips or it’s oky 2 mo this to holidays then it will only be x amount of months to such and suches wedding and then only x amount of months till Christmas etc.

It’s so difficult however private will always be an option NHS I’m not sure will x

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I am trying to think the same way.

I am also trying to convince my self that the wait is actually good, and it will allow us a few more months trying naturally. Maybe I am just lying to myself.... if something had to happen naturally it should have by now 🙁

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Sadly I didn’t know anything about this. As it took two years to sort out our NHS referral we did a self funded round during the wait. Then they took away one of our NHS funded rounds and I was devastated as I knew we would never be able to afford to pay for t again ourselves. I know I shouldn’t complain because I still got one stim round and two transfers from the NHS, but as nothing has worked yet, I feel like I may have lost my chance at a baby because I didn’t know about this policy. I would say wait!!

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Sorry to hear you have lost one of your funded cycles 😕

Wishing you good luck for your journey xxx

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If you went abroad they want your medical history to assess you but they don't write to your GP as another lady said they would only know if you told them. If can afford it go abroad and you will still get the nhs As back up xx

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I will be thinking about my possibilities carefully before making a decision.

When I have a definite date from my clinic I will see how I am dealing with the waiting time.

Thank you for your opinion! 😊

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Good luck xx

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I can understand your frustration with waiting times. It's been a year since we first started tests - I just want to get underway with treatment now!

My mother in law very kindly agreed to pay for us to go private but we were informed by our fertility nurse this would jeopardise our eligibility for NHS funding 😢 I was devastated but have come to terms with the waiting game now....It's for the best as I know we've got that money to see us through another cycle if our NHS one isn't successful

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The waiting, the waiting... 😕

I really can’t understand this rule...let’s say we go private before our nhs cicle and we do get pregnant. Wouldn’t we be saving nhs money ?! Why would they try to put us off trying privately first then? 🤷‍♀️

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This is exactly what I thought 🤷‍♀️ who knows?!?

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It is a mine field these CCG’s! What I would say is the wait may not be too long. It was 8 months from my first tests to my cycle starting, which wasn’t actually too bad a wait. Its always worth phoning the clinic where you are and speak to them directly about waiting times and see if there’s any cancellations? Xx

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Will try to do that when we are actually on the waiting list. At the moment I am waiting until our next appointment where they will go through our blood tests and tell us how long to wait. As far as I understand the next appointment will be towards September,.. 🙁

I am really hopping that it will be earlier that that

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