Appeals for further IVF funding - Anyone done it and won?

[Mrs_D]

Hi all,

Me and my husband are making an appeal to our local CCG (with the help of my GP) for further IVF funding. My borough only currently allows one cycle of free IVF NHS funded treatment, which we were sadly unsuccessful with back in June.

I was wondering if any of you has done the same and were successful?

If so, what arguments did you include to help when making your appeal?

Thanks!

[PurpleH]

Hi Mrs D,

I don't have any good news stories or advice really I'm afraid I just wanted to wish you luck. I also live in an area where we only got 1 funded NHS cycle but unfortunately an appeal wasn't an option. I did think a while back of approaching a local councillor to speak to them about the postcode lottery of IVF but decided against it. But maybe it's something you could consider for your appeal?

Anyway best of luck, I hope you win your appeal x

[Hidden in reply to PurpleH]

There is currently a petition going about IVF postcode lottery. It’s on fertility networks page on Facebook and here’s the link. We are fortunate and had the option of 2 fresh and 2 frozen and I can’t believe it’s not equal everywhere xx

petition.parliament.uk/peti...

[Mrs_D in reply to Hidden]

Totally agree. What ever happened to Equal Rights? xx

[PurpleH in reply to Hidden]

Is this a new petition? There was one that went round last year scream4ivf that reached the 100000 mark to be heard in parliament but so far no change. Unfortunately these things always take so long. We are unlikely to benefit from it if it is changed but I hope it is changed anyway x

[Mrs_D in reply to PurpleH]

Fingers crossed x

[Mrs_D in reply to PurpleH]

Thanks so much. Everyone one has the right to appeal to their local CCG, so I would definitely recommend it. It certainly can't hurt to try. I'm not expecting them to be generous but wanted to give it a go, as I can not help but feel this whole postcode lottery is just ridiculous and totally unfair. x

[PurpleH in reply to Mrs_D]

Unfortunately I live in Northern Ireland, we don't have CCGs so don't have any way of appealing. Works slightly different over here in that we arent approved for funding or anything, just referred by GP for tests etc.

Everyone gets 1 free funded go as long as they have a diagnosed infertility problem. Also people who already have children get 1 funded round here. Lots of different rules for everyone paying the same taxes unfortunately

Best of luck to you anyway x

[Mrs_D in reply to PurpleH]

Oh wow. I didn’t realise how different it was. Wishing you all the luck with whatever you chose to do next x

[embiemomma]

Our CCG only offered one cycle, our fresh cycle failed - probably because I was ill from an Infection following egg collection. I queried this and asked whether I should have been advised to freeze all due to the infection and the fact I was started on antibiotics the same day as embryo transfer. I'd also called them 2 times in the 3 days prior to transfer with my symptoms including pain and a temperature and was told to take paracetamol. Turns out this advice was wrong and my case went to the panel and I was called a few days later to say they were willing to offer me a FET as part of my funded cycle - they never actually admitted fault but did say it was because I was ill the first time (2+2=4) that FET was successful and is now our 2.5 year old!! Not sure of your circumstances, but just wanted to share a positive (in the end) story and let you know it is possible! And more importantly, if you feel you were let down at all, definitely speak to PALS!! Xx

[Mrs_D in reply to embiemomma]

Thank you. So nice to hear such a good news story. Hoping for some good news to come our way, feels like its never going to come! x

[asnew]

Hi Mrs D,

I have recently written to our CCG and appealed. I am just coming up 39 and our CCG only offers NHS funding up to the age of 37.5 so we don't qualify. The neighbouring CCG who are a joint hospital trust group with ours and the two are due to merge next year, are up to age 40. It's all so unfair.

Anyway I used a template letter from Fertility Networks website as my base and adjusted it to suit. I also added in that I am of the understanding that CCGs have a duty to reduce health inequality which includes age and pregnancy but with the other CCG offering a higher age threshold within our county I question that due regard for health inequality has been taken into account. I also mentioned that the National Health Minister has recently asked for the postcode lottery to be brought to an end and requested that all CCGs should move towards full implementation of the NICE guidelines.

I appreciate our circumstance is different to yours but it just gives you an idea of what we've done and I found the template letter a perfect starting point.

However I sent this on the 8th of July and have yet to hear back. To be honest I'm not holding out much hope, our CCG is in dire straights financially and the reason for the merge but it's worth a try and I do think the more people appeal the more pressure is being put on CCGs for the future. Even if it doesn't help us, I truly hope it helps people in the future as infertility is so heartbreaking alone without this ridiculous postcode lottery.

Good Luck x

[Mrs_D in reply to asnew]

Hi, Thank you so much for getting in touch. I found the same template myself and have sent a letter off direct but also have been liaising with my own GP who is helping with an appeal from her side also, but even she is finding it difficult when filling in the application form as it requires for her to outline, why our case is so exceptional for them to offer further funding and requires inclusion of facts and figures, which isn't as easy to find online as you would think.

I really do wish you all the luck in the world with your appeal. As you said it is heartbreaking enough, without going through this outrageous postcode lottery saga and having to appeal for them to follow guidelines that NICE recommends.

Best of luck xx

[Sarah83ap]

I did this. My partner and I had doctors in different catchment areas which meant we had to wait 3 years to be able to get funding and at the age of 36 I didn't want to wait. I appealed and wrote to our local MP and the National Health secretary but sadly got nowhere. I didn't even get one round funded which is so upsetting!

Good luck with your appeal. Hope you have better luck.

[Mrs_D in reply to Sarah83ap]

Oh goodness. I am sorry to hear that. I just find it crazy how they can treat you like that. Wishing you all the luck with whatever you do next x

[Melrey]

Have you heard an outcome yet? I wrote to my ccg two weeks back.

[Mrs_D in reply to Melrey]

Hiya, I have and unfortunately it was declined. Which was expected but we were still gutted nonetheless.

Wishing you lots of luck with yours!