The 3 cycle "rip off" - time to protest. - Fertility Network UK

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The 3 cycle "rip off" - time to protest.

andyRUK profile image
18 Replies

I see most people on here are posting about the actual process and medical matters. However as no doubt one of a huge many people struggling to pay for IVF I am still finding it difficult to find any business, no matter whether in private or public sector, that can "get away" with charging for something they do not carry out. We, as a couple, are in the situation where "gambling" on a 3 cycle IVF treatment where you get nothing back if the first one is successful is what we want to do. However we are in no financial position to do so. I cannot find anywhere within the NHS that has the same policy. Imagine being ill with cancer that only the most expensive drugs can treat and the drug company saying "well we will not provide it for you unless you buy a year's worth, but many people don't need to take them after 3 months as they work for at least 30% within that time - however sorry you have to buy a year's worth." There would be outrage. I am asking if there is, someone deep down in NHS policies, a statement that "you pay for what you get and nothing more." I hope that makes sense?

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andyRUK profile image
andyRUK
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18 Replies
Sorcha_H profile image
Sorcha_H

Hi there

In NIreland we only get one cycle.. Then its up to us to fund.

Imd123 profile image
Imd123

I think the whole idea of people making their fortunes out of anyone's despair is horrible.

Miroslava profile image
Miroslava

Hi me and my partner have to go private coz he has got vasectomy done in previous relationship and got kids too.. nhs didn't help us with nothing at all it's a joke same time I know someone who wants sex change in their 60 and nhs is funding their full body hair removal and all hormone treatment.. we had to take loan from bank and only pray to God that one of our 4 cycles we can afford will work or we will end up paying 10 years for something that didn't even work.. so don't need to even worry about what u mentioned in the post.. whole nhs is just joke x

lou79 profile image
lou79

Hi, I typed a long response but my phone acting up and I lost it all!! Anyway, the gist of it was to google Prof Robert Winston. He is in the media campaigning about couples going through IVF being exploiited by the private clinics and also against the post code lottery and ridiculous funding critera of the NHS. I have been on here several times lately on my soap box about these issues. I feel very strongly that we need to make a stand. It is so unethical and immoral of these clinics to charge what they do. Prof Robert Winston did an article in the daily mail a few weeks back and an article in the times last wkend. He also did some tv interviews last week. This morning on thurs 10th and the Wright stuff on 4th Sept. You might still be able to get them on catch up.

Olivia1980xxx profile image
Olivia1980xxx

Hi there . Look like doctor Winston make some of us to take step back and think twice ... I'm angry too . Where I live we get only one cycle on NHS . We was thinking to go thru with another cycle but then my hubby decide to wait and clinic was sending us bill for over £5k . We ring them few times that we didn't have any treatment and to stop sending the letters. Finally they stop. But my issue is that from last two month my left side where I got my only tube is hurting when I'm ovulating ,durning sex and when I got period. I went to my GP couple weeks ago asking her to referal me for ultrasound and her answers was I try ...not really what I expect. Then I went again last week saying that I'm worry about my left side and the only thing I ask is to do couple tests and scan . She respond I will call doc in Clinik to ask for it . 2day I sow doctor in my GP practice I told how we feel with my hubby that we being treated unfairly ...we don't want anything for free if they want us to pay for test we will but don't just leave us "like that "...just because we don't "pay £5k"...to go thru another cycle. We even wrote letter to CCG to help us but they replay my GP need to wright another form to them. I don't think so they going to do anything about anyway...but worth trying . I told GP 2day that we being trying after my operation in last December even after IVF cycle we still trying and nothing. I know my chances they 50% having just one tube but (I hope is just false alarm) my latest symptoms looking like I may have fibroid ...well I hope not... Did I ask for that much ? I'm only asking to do few test to check if I'm ok to do scan to see if I'm wrong because the only think I can be is being wrong in "my "symptoms... Doc Winston say They don't do enaf investigations and that what they should do... im not going to pay £5k if I don't know I'm fully OK to go thru cycle again ...

Hepzibah profile image
Hepzibah

Hello All. I think AndyR is referring to the package 'deals' offered by private clinics. There is a 3 cycle package deal offered at most clinics, which, if you buy it is cheaper than paying for 3 separate cycles.... However, the clinics are clever. For example, if you buy a 3 cycle package deal and during your first cycle you become pregnant and make it to 20 weeks, this is termed a 'success', and you cannot cash in on the next 2 cycles that you have paid for. So, hypothetically, I've made it to 20 weeks, but lose my baby at 21 weeks. That's it. I have lost all of my 3 cycles and have to find further monies to pay for my next cycle, if that is what I want to do. AndyR, I believe this practice to be illegal. Additionally, it is exploitative as it prays on the vulnerability of those seeking fertility treatment. I am more than happy to help you complain about these disgraceful practices. The HFEA is not interested in curtailing this either, it seems. Please send me a message if you would like to come together to do something. Always happy to help!

Imd123 profile image
Imd123

I love that there seems to be a movement towards ending the exploitative practices of many fertility clinics. I just feel we need a bigger voice. Prof Winston is a major figure but even he hasn't managed to bring the attention we need. I would love to hear from groups like infertility network and any other patient rights groups who can back up the work started by Prod Winston. As I have said in previous posts the best way to let clinics know that we are not happy about how we are being treated and that we feel exploited is to refuse to use their services until they change. However, time is a luxury many of us don't feel we have. I am in the process of choosing a clinic for our first private treatments and the costs at the moment look like £10,000. It makes my blood boil that I am being taken advantage of but I already feel robbed of 4 years of my life and just want something that will work for us.

How can we be heard?

Hepzibah profile image
Hepzibah in reply to Imd123

Hmm. Yes. We need to start something. I was thinking Facebook, but not everyone knows that we are having IVF, and I don't want them to, either. Let me think...

poochi profile image
poochi

Hi thought I would let you know a company do offer a funding program where you can pay for 3 rounds & a successful round is only on a live birth. If after 3 rounds no live birth then you are refunded 75% of costs.

Its not great but it might be worth looking at as they have a couple of options.

I agree the costs are extortion and preying on people at a time when they are vulnerable which would not be accepted in any other medical service offered!

tindog profile image
tindog in reply to poochi

Hiya, could u private message me the name of the company please? ;)

poshlady84 profile image
poshlady84 in reply to poochi

if company i think it is they have been very good and we thought the fact tht it is only deemed a success if you get a 'live' birth really good.

Hepzibah profile image
Hepzibah in reply to poochi

Hi Poochy. I think I know the company to which you refer. However, if you look closely, there is a limit on the package on the age of the female undergoing treatment. Again, this is discriminatory. There is no incentive to offer older women this type of chance, since clinical success rates are low. In my opinion, good practice in general can lead to better success rates for all ages. For example, a drug treatment protocol that is adjusted throughout the cycle to suit the individual. Also, better lab practices. For example, our clinic damaged three embryos - but of course are not liable. Also, freezing procedures and frozen embryo transfer later on can help increase pregnancy rates. But, they just want you in and out and money in the bank at the end of it. I have informed myself and I no longer take their word for it. For example. Due to my age, I am on the highest legal injection dose (450iu). This is more expensive (of course), can damage your ovaries, can cause OHSS (which I have suffered with) - all of which affects your ability to conceive in the long term. I am now telling my clinic what to do, as I don't trust them in the sense that I do not believe that they have my best interests at heart. I decided not to inject the full amount each day. As such, I ended up with three times the number of embryos on the lower dose than the previous cycle....

poochi profile image
poochi in reply to Hepzibah

I totally agree!! Fingers crossed you get your BFP soon x

AlisonO profile image
AlisonO

We are afraid that we have had to edit a post in this thread as it mentions a company, and we ask that names of clinics, companies and health professionals are not posted on the community.

Please see our posting guidelines healthunlocked.com/infertil...

Neetie8 profile image
Neetie8

Despite being referred on the NHS and wasting a precious year in their system turns out we get nothing on the NHS due to my age. However private clinics are happy to take our £6500 for one shot at IVF.

This whole process is exhausting, upsetting and downright morally wrong.

I have asked nothing of the NHS in the 26 years I have worked for it. I have defended it, praised it and when I need it, it has let me down. We have no children at all. I wanted a baby but with the right person for me... I just happened to meet the most wonderful man slightly later in life.

Having our first consultation on 7th October. Cashing in our endowment to fund it. Shame on the NHS to not even give us one go.

Feel angry with the whole world right now.

Good luck to you all. xx

Reply

Hepzibah profile image
Hepzibah in reply to Neetie8

Tell me about it...

Imd123 profile image
Imd123

I agree that something has to be done but also agree that infertility and the process that goes with it is an extremely private one. I have a select group of people who know what we are going through and Its my right to keep it that way. Which is why we need organisations to stand up for us.

lou79 profile image
lou79

I completely agree with you Imd123, I haven't been able to find anything on the Infertility network site regarding this. I would imagine the would want to support us this.

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