IVF fairness on the NHS - petition and campaign to end the IVF Postcode Lottery

[EJStrange]

Hi All

I've started this thread as I've set up a campaign to end the IVF postcode lottery on the NHS and I need your help with to get signatures on and share the parliamentary petition link below. It's not right that something as arbitrary as postcode should dictate the treatment we receive for infertility on the NHS. I started the campaign as I had to cancel a round of treatment halfway through when my GP misinformed DH and I that we could have 3 rounds of IVF on the NHS. As you can imagine, we were devastated. 3 months ago (after a year off due to depression) we paid to restart that round privately, but sadly my pregnancy ended in MC at just shy of 8 weeks.

The campaign has backing from Fertility Network UK, IVFBabble, The Dovecote.Org, and my MP Layla Moran who will be submitting an Early Day Motion to Parliament about this next week (Sept 2019).

The petition runs until Feb 2020 - please show your support for the campaign below, sign and share widely so we can get this issue heard. I'm very open for ideas about how to keep pushing this forward so do feel free to post these below!

If you're interested the campaign is also on Facebook and Twitter @IVFfairness.

petition.parliament.uk/petitions/266747

I wish you the best of luck OP, but petitions aren't allowed on the main boards!

I totally agree. Don't know what the correct rules should be but I do know it should be the same where ever you live.

I signed. Didn't know petitions weren't allowed on here either!

I presume that (understandably) you were ultimately hoping for all areas to offer more cycles in line with the areas with the highest IVF provision? I fear that by campaigning to make it equal in this way everywhere might be brought down to the lowest level of provision, i.e. no IVF funding at all

I agree the rules should be the same everywhere - but I wouldn't put it past the current government to make it the same everywhere by pulling all NHS fertility treatment funding :(

@artistofthefloatingworld The truth is that most places aren't offering more than 1(if any) at the moment, and with huge lobbying groups behind us and NICE Clinical Guidelines stipulating that 3 rounds of treatment are clinically effective and cost-effective we have a high chance of effecting positive change with more rounds for all. In any event, I personally would prefer to know that we have fairness on the NHS, rather than having 'more' - but as I say, I think we have a good chance of securing 3 across the board.

Genuinely wasn't aware that the petition link may not be allowed here, oops and apologies

I don't think it will be pulled altogether, at least not anytime soon. It isn't just the amount of cycles but other rules too. For example in my area you don't qualify if either of you has a living child, even if that child doesn't live with you and contact is minimal. However a friend in a different area had ivf despite her DH already having 2 children with ex wife. Very unfair

@PleaseSirMyGoat You're absolutely right, the current system is full on inequities. I intend to keep working on it, one small step at a time! All of your support is much appreciated.

I personally would prefer to know that we have fairness on the NHS, rather than having 'more’

What do you mean by this? You’d rather everyone had 1 round than some places have 3 rounds?

@LemonAddict As I said above, I don't think that we would be reduced to 1 round everywhere given clinical guidelines, lobbying power from clinics, practitioners, MPs, etc. But ultimately yes, if it came to it I personally feel that we pay in to the NHS system in the same way, and so we deserve equal treatment. BUT, as NICE states that 3 rounds to be clinically effective, this is likely to be the outcome, and this is what I'm working towards with the help of other campaigners and organisations. I have discussed this at length with my MP (Layla Moran) and Fertility Network UK who say all it would take is a small change to wording of current legislation allowing local CCGs to offer whatever they like! SO frustrating.

Thanks for clarifying.

I won’t be signing and I hope that anyone else reading this understands exactly what you’re campaigning for, before they sign it.

Ok, as long as you're aware provision might reduce rather than increase if we were to make things equitable! There are unfortunately several things deemed to be clinically effective and recommended by NICE, but are currently unfunded, and with NHS funding the way it is at present I'd worry that 3 cycles everywhere may be a struggle. My local CCG has recently reduced from 1 NHS funded cycle to none.

I don't disagree that it is terribly unfair

LemonAddict WOW. For absolute clarity, I'm campaigning for equality and fairness on our NATIONAL Health Service, and I'm OK with that. And I have the emphatic backing of several large lobbying groups, including Fertility Network UK, IVF Babble, and The Dovecote Org., so it can't be all bad. I assume you're a person who benefits from the current system and that's why the idea of equality frightens you. Any

BUT, as NICE states that 3 rounds to be clinically effective, this is likely to be the outcome

I would imagine whatever is cheapest is more likely to be the outcome...

I would imagine whatever is cheapest is more likely to be the outcome...

Agreed

This could surely apply to any health care on the nhs? I know that the waiting list for treatment for my sons much needed surgery was virtually non existent in some areas with patients being seen quickly and huge waits in others. Unfortunately for us, the latter.

All due to the postcode lottery. Why is IVF different to much needed medical care? I don't disagree by the way and there should be equal treatment throughout all areas. However I can't help but feel that other areas where people's health and lives are at risk should be priority and a lot of these areas aren't exactly excelling right now. I wish there was a never ending pot.

@BongosMingo Infertility is a disease according to the World Health Organisation. So should be treated like any other disease, including cancer. I'm surprised you should feel unable to sign given that you had to pay privately for treatment. But you do you.

Positive vibes only please - I experienced my first MC after 5 years of trying 3 months ago, and don't need to explain over and over again why fair access benefits everyone. I am trying to help everyone to access treatment on the NHS REGARDLESS OF WHERE THEY LIVE. I won't be personally responding to these negative comments or comments about who isn't signing it going forward for the good of my mental health, so please save your breath if you don't have positive, constructive or useful things to say.

Whilst your intentions are good, you're coming across as very naive. The NHS cannot fund vital, life saving treatments, where do you suggest the additional funding is going to come from for this? Have you worked out how much it will cost, and which service should have its funding reduced in order to cover it?

Are you honestly suggesting that IVF should have equal funding priority as cancer treatment?

I do get where you're coming from op. Infertility is shit and miscarriage even shitter and I really do sympathise However Baggy pants nails it in all honesty. It's a shit situation all round really.

The NHS cannot fund vital, life saving treatments, where do you suggest the additional funding is going to come from for this?

As someone who lives in Croydon - which funds zero IVF cycles - I don’t think it’s unreasonable to say all areas should get, for example, two cycles, rather than our friends across the country having three and is having none. We’re currently ttc and not at that stage yet but, should it come to it, we’d need to spend either £20k moving house or fund privately, and either way both are unaffordable right now (would need about 2 years to save that much, with the inevitable impact on success due to being older).

I don’t think there should be a place for postcode lotteries in anything provided by the NHS. Either it’s offered, or it’s not.

OP this does read like you expected 3 cycles because your GP misinformed you and found out it was only one so you don’t want others to get three.

You’re completely right that the postcode lottery is awful, it’s not just ivf where that’s the case, investigations and treatment for recurrent miscarriage are as confusing and varied across the country. In my area they suspended all funding for ivf and it’s unlikely they’ll bring it back. I’m with others about what the concept of fairness looks like in this case, that’s all.

I’m sorry for your loss and wish you every luck in getting your baby

@NoBaggyPants I don't think it's naive to expect a 21st Century healthcare system to fund equal levels of treatment in accordance with clinical guidelines. There is research to show that the benefits of providing 3 rounds actually outweighs the burden on the NHS around mental ill-health as a result of being unable to access treatment, among other things. Any suggestion that the NHS cannot provide this is, I'm afraid to say, a lie.

I am trying to help everyone to access treatment on the NHS REGARDLESS OF WHERE THEY LIVE.

I'm really not intending to be at all critical of you personally, but I just want you to be aware that this petition to make things more equitable may not do this.

I'm so sorry for all the difficulties you've faced, I wish you all the best going forwards

@AnneLovesGilbert 'OP this does read like you expected 3 cycles because your GP misinformed you and found out it was only one so you don’t want others to get three.'

I mean, the existence of the postcode lottery means that this kind of confusion can happen AND THAT EVEN OUR GP WAS CONFUSED BY IT. Isn't that outrageous? Don't you think this deserves addressing?

@Dollywilde Thank you - well said.