Time to change the IVF postcode lottery
Bleats · 14/11/2013 16:44
I started on the baby buses two years ago on Mumsnet and then gave up. I am now back and I am going to start my first IVF round in January next year. Like many of you I will be going private due to the postcode lottery that I face in my local Clinical Commissioning Group. While I can get one round of IVF it is at a clinic which has barely a 20% success rate, well below the national average. This is STRESSFUL!
I think that the NHS should provide free and fair access to treatment. Since 2004 NICE has recommended 3 rounds of IVF treatment for people qualifying for treatment, yet only a quarter of us will be able to secure funding for this. There are too many people receiving no support or only one round. Also what constitutes a round varies. Who will receive treatment is inconsistent. People do not necessarily get to choose the NHS centre that will treat them. This postcode lottery is unfair
Am I the only one annoyed by the fact that I pay taxes, but can’t get treatment that others do. Just over 62,000 rounds of IVF took place in 2011 and the majority of them were privately funded. Assuming that all of those would be eligible for NHS treatment (unlikely) and that each round cost £5,000 (probably less), it would have cost the NHS £310,000,000 to fund all rounds of treatment. Expensive, yes - but this is just a drop in the ocean for NHS England's £95.6 billion budget. To have funded all IVF in the whole of the UK (not just England), it would have cost just 0.003% of the overall NHS budget.
What do you think? I am setting up a campaign on the issue and I am hoping for the support of Mumsnet. I would really like to know if you agree that something should be done.
FeatherFeather11 · 14/11/2013 17:33
Count me in. Where do I sign up? I think the system should be at least consistent - two rounds for everyone regardless of where you live, perhaps? I'm lucky that I live in an area where two rounds is given, but the current system is screwed.
Also, it's ridiculously unfair that a woman who has never had a child is turned down for treatment on the grounds that her partner has children from a previous relationship. That's not the position I'm in, but I keep reading about women who are in that situation and it makes me furious.
eurochick · 14/11/2013 17:45
I agree with you on all counts. However I note that IVF threads outside the Infertility and Conception boards tend to bring out the "it's unnatural/why don't you just adopt" crew (who of course already have children and have no idea about the pain of infertility and no perception that adoption should not be considered some second best choice for the childless), so be prepared for that if you want it to be a MN campaign.
sansissu · 14/11/2013 17:46
Yup, I'm in the category that doesn't have the right to any funding because someone else met my husband before I did so he has a child. I understand there has to be a limit somewhere but why do I have less right to have a child than a single woman? Technically (leaving love and whatever aside), I would be in a better position if I divorced him, moved out and just asked him to donate sperm. How's that a logical position?!
NoCupcakesOrCocktails · 15/11/2013 05:49
I completely agree. I am lucky as I'm entitled to 3 cycles on the NHS. However I had to appeal to my CCG a number of times before I secured the funding. I'm also struggling to get my treatment transferred from an nhs clinic with a success rate of 19.5% to a private clinic of 36%. The private clinic has contracts with some CCGs in the area but not mine.
I read a research article a while back about the long term effects of infertility. It concluded that due to health issues and long term mental health issues it would cost the NHS less in the long term to fund IVF as recommended by NICE.
I strongly believe infertility is a medical condition not a lifestyle choice. I agree with Euro that out of infertility/conception there may not be a lot of support. I too have had the misfortune of stumbling across some of these threads on AIBU. Some of the comments I've read by people with children (and no experience of infertility) have been really upsetting.
I know I would never have spouted crap like "it's natures way" or "just adopt" even before going through this.
MabelBee · 15/11/2013 06:03
I thought the cost to the NHS was closer to 3 grand a round.
rabbitonthemoon · 15/11/2013 11:42
I'm fully with this. When I first went to my NHS fertility clinic my area wa not funding any ivf. If I had lived 0.8 miles down the road I would have been entitled to one round and in a nearby county three rounds. Luckily for me, the rules got changed and I became eligible for 2 rounds. It's probably the only lucky thing to happen to me in the three year TTc journey but that's another story. Round number one just failed.
In terms of a mumsnet campaign, well I can only imagine the kind of comments that this will attract as already said here. Eg there are so many unwanted babies just in need of a loving home (maybe spend a day reading up on adoption and all the implications) and what's meant to be is meant to be, which frankly is pretty easy to say if you haven't gone through years of infertility. What irritates me even more are those that say I can imagine how I would have dealt with it and I would never have done ivf. Well I thought that once, more fool me. And even of you have gone through infertility and feel those things that does not mean other peos grief and needs matter less or should be the same as yours.
The parity between different pcts is highly problematic. My own PCT three years ago put together an argument that the psychological impact of infertility was a tad cheaper to address than the costs of ivf. That was very thoughtful of them. My same PCT no longer offers infertility counselling.
I'm currently faced with the option of donor eggs or adoption. This is after the NHS spectacularly failed to diagnose the true cause of my infertility (very low ovarian reserve) because my consultant 'didn't believe' in amh or antral follicle counts. Do I feel remotely bad that the NHS is stumping up money for my treatment when I was under their care for two years undiagnosed and also misdiagnosed with a condition I turned out not to have (after major surgery) - no I do not.
rabbitonthemoon · 15/11/2013 11:51
Just re-read my post and want to clarify. I'm not anti adoption by any means and may well embark upon that path. However, my chances of experiencing a newborn are almost zero, I will have to justify our want to be parents in great great detail in a (so people tell me) gruelling process, the child will have very different and complex needs that I will need to be prepared for and I also have to be one year on from any attempt to be one pregnant meaning I will have to use contraception. The 'why don't you just adopt' comments makes me very frustrated.
TheFabulousIdiot · 15/11/2013 11:53
I just wanted to post as someone who had successful IVF on the NHS in 2010 just after my board upped their number of rounds from one to two.
I was initially refused treatment on the grounds of my age but I successfully appealed. Although it took me months to get round to appealing I was actually told that they had reviewed my case and would now offer me a round within about a month of writing the letter! Had I known it would have been successful I would have done it earlier.
If anyone ever wants to know what kind of letter I wrote I am happy to share.
My reasons for appeal were that I thought the GP had delayed referring me to my NHS clinic and because of that, by the time they had seen me and put me on clomid for a few months I was approaching the age cut-off. I felt that had they referred me sooner I would have been within the age-range.
Good luck to all those going through a cycle.
enderwoman · 15/11/2013 12:05
This popped up on active conversations so I had a read.
Although I'm not going through IVF I fully support your ideas. There shouldn't be a postcode lottery for any NHS medical treatment.
Bleats · 15/11/2013 18:13
Thanks for the strong response. I have a website, but I can't share here but if you want to be in the campaign can you email me I am on [email protected]
Feathers, so glad to have you on board.
Eurochick and Rabbit I know what you mean on adoption. If the consensus is against on the ivf then mumsnet will not run it, which I understand. Adoption is really important and such a valuable thing to do. I may well adopt whether we conceive or not, it is not a second prize but equally mothers who can conceive naturally lecturing on others about adopting is crass. Let's see and I will check out the threads.
Sansissu, fabulous and cupcakes great stories. If I can share them it would be helpful.
MabelBee - I am being deliberately cautious on money. I think it will cost less (even if more access the cost of treatments are falling). You are right the nhs budget it around £3,000 or £4,000.
Enderwoman - Thank you, much appreciated.
I hope I haven't missed anyone. Heading to a wedding for the w/e so will check in on Sunday.
Bleats · 17/11/2013 15:19
Hmmm I have just reread my comment. Sansissu, fabulous and cupcakes apols if I sounded flippant by "great stories". They are just strike me as highly illustrative of what is going on and it is clear that nothing is simple when it comes to IVF on the NHS.
Feathers thanks for the email - I will reply asap.
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