Newbie - Appeal for 2nd round of IVF

Hi All!

New to the site and wanted some advice from anyone who has had to appeal a refusal for a second round at IVF.

I'm 26 DH is 24 but due to having cancer at 17 is infertile. Had the chance of storing sperm whilst undergoing his treatment and had our first attempt in 2011. Needless to say it was a bfn, both heartbroken and took us a while to compose and want to try again.

Now we're in a much better position to try, wrote to the local CCG who stated they give 1 cycle and thats it. Plus due to devious failed attempt they would not fund. Received that letter at the end of January and since then have done pretty much nothing but research second attempt success/failure rates with women of my age plus older and cannot find (unless I'm being really stupid) any correlation that what they have said is correct - if anything the opposite!!

Does anyone have any advise or hints of what to reply back as it's getting me down that the CCG's think that they can play "God" with people's lives!

Thanks in advance

[Katrina13]

Unfortunately this is how it is. The postcode lottery means that some CCGs only fund one cycle and there is no chance to appeal. You could look into how many cycles your neighbouring CCGs fund and if it is more than one perhaps try to register with a GP in that CCG. If you have a relative that lives in another CCG area with better funding you could look at moving in with them (on paper) to register with a GP in that area.

[Hidden]

I have had dealings with CCG too and was unsuccessful - sorry. My partner also had cancer, he was only 23 but had already had 2 children by in the previous relationship. He stored sperm before treatment but as he is already a Daddy we have been refused any help what so ever. I have consulted NICE about the guidelines they put in place and our CCG but have had no help at all. I also wrote to our local MP as I know some couples have had help from them (might be worth a try) but again she was useless. We are now egg sharing as this reduces our £5.5k cost down to £1.5k (would this be something you'd consider?)

I hope you have more success than us. It is a totally unfair and emotionless system especially when the NHS will pay for 'insecure' women to get boob jobs and lazy overweight people to have a gastric band in the blink of an eye!

I feel your frustration and will be thinking of you x

[DianeArnold]

Hi donnauk88. Unfortunately, you definitely didn’t get a good start with your fertility treatment. Such a shame when your husband has come through what must have been quite an ordeal at such a young age. I realise that it is doubtful that you will get another try on the NHS, but it’s always worth asking again. You might like to use the appeal template letter on our website, if it helps. Have a look at our website infertilitynetworkuk.com and go to the “NHS Funding” pages. Scroll right down to the bottom where you will find some “pink” writing. One of these is a template letter of appeal to fill in and send to your local CCG. If you don’t know their address, you can find it on the NHS Funding page, on the left hand side “CCG Funding Details”. Also, see if your husband can get any backup from his oncologist at the time – it just might help. At the risk of being a bit forward here, might I also suggest that if all else fails, have you given any thought to entering an egg sharing scheme in exchange for free/reduced rate treatment? Something maybe to think about. Meanwhile, I really do wish you well with all this, and let’s hope something positive comes of it all. Diane

[Hidden]

Katrina,

The closest CCG to offer more than 1 cycle is Essex or Hull, both quite some distance from my home. I also have underlying medical conditions so moving GP's wouldn't be an option unfortunately - if I didn't have the condition I would be more than happy to do so. Also, congratulations - saw some of your posts! sounds like you've had a journey and half!

Misssav,

I'm sorry that you have had no help. I think the guidelines should actually be enforced by al CCG's , to make it a fairer system. How can they stipulate that you are to be childless because of your partners previous relationship? It's so unfair.

I have thought about egg sharing but don't want to go down this route, I want to exhaust all opportunities before I possibly go down this path.

Good luck with your treatment, fingers, toes and everything crossed for you xx

Thank you Diane,

I have actually used the templates from the website and amended some parts to the reply I had from my CCG - the frames given on there are really good! I have thought about egg sharing schemes but do not want to go down this route.

There has got to be something more to the CCG's decisions surely? I find it hard to grasp why fertility treatment is still almost looked upon as taboo, yet people can go and get boob enlargements, tattoo removals and body changes completed on the NHS. It's unfair that I and so many others in my situation, have paid into the system for years to get nothing but negative approaches back from 'professionals' - that term used very loosely.

I haven't thought of speaking with my husbands Dr at the Haematology department; however it was him who said store you're sperm at the neighbouring hospital who do the IVF treatments. Feel very let down by the medics at the moment - if the GP's had listened to my husband and I's concerns previously, then he may not have developed cancer. Got to love "if's" eh.

[DianeArnold]

Hi. We are constantly arguing exactly what you are saying, and so the battle goes on! The only other suggestion I can make is for you to possibly write to your MP – there is a template letter for that too. I can fully understand you not wanting to go down the egg sharing route, when treatment should be available. I don’t know what else to say, except for to speak to your husband’s haematologist to see if he/she can back you up at all. Diane