Guest post: "We must end the IVF postcode lottery"

[MumsnetGuestPosts]

Women and couples are losing out on the chance to become parents, often by virtue of where they live and what their Clinical Commissioning Group (CCG) is paying per cycle of IVF. This is because of dramatic regional variations in the availability of IVF on the NHS. This has to change.

Equal and fair access to treatment is one of the founding principles of our National Health Service - but it's not something we're currently delivering when it comes to IVF. I see the devastating impact infertility can have on many women, couples and families every day. I also believe it would be possible to level the playing field without any extra cost to the government.

At the moment, the number of IVF cycles offered to people varies depending on where they live. A small change to the current system would make a huge difference to people's lives by doubling the number of IVF cycles in some regions and thus increasing access to IVF.

Fertility problems affect one in six couples in the UK. With a growing trend for women to have children later in life, coupled with an increase in male subfertility due to various lifestyle factors, this figure will rise.

At present, couples trying to conceive can access IVF treatment on the NHS – but a range of caveats exist for them to qualify. These include a woman's age, whether either partner has a child from a previous relationship, or whether a woman's egg reserve is normal enough to merit treatment.

The National Institute for Health and Clinical Excellence (NICE) guidelines recommend that women with fertility issues should be offered three full cycles of IVF on the NHS. But, due to a postcode lottery, less than 80% of Clinical Commissioning Groups (CCGs) in England meet the recommended standard of three cycles.

The cost to the NHS of providing fertility treatment is significant, with figures of more than £200 million per year cited for IVF alone, and this cost is likely to keep rising. Within the current system and with the known pressures on NHS budgets, offering a fair level of treatment around the country is almost impossible. The result is that women and couples are losing out on the chance to become parents, often by virtue of where they live.

However, I believe the solution to end this discriminatory postcode lottery is to introduce a national tariff for IVF. At present there is a wide disparity in the price paid per IVF cycle by CCGs in different areas - with the price ranging from £2500 to over £6000 per cycle for the same treatment.

The cost of a cycle has a direct bearing on the number of couples who can access treatment within a CCG budget. This price differential is not only unjustified, but is needlessly preventing thousands of couples every year from becoming parents.

A national IVF cap or tariff that sets an upper limit for the price any CCG pays for IVF treatment would not only save the NHS money but would also give more couples around the country access to treatment within the existing budget.

The NHS already uses this kind of national price cap with medical treatments such as hip replacements and other operations, so that wherever you are in the country your local CCG will pay a standard set cost for your treatment. An upper limit per cost of IVF treatment cycle is already employed across other European countries such as Belgium, where it contributes to a broader level of access to fertility treatment for those who need IVF.

I believe that the national cap per IVF cycle should not exceed £3000-£3500 (all inclusive), which is significantly below the price many CCGs are currently paying. With a cap in place, CCGs will be able to use their collaborative purchasing power to make sure they receive the best value treatment.

This principle already enjoys broad support amongst many patient support organisations, charities and professional bodies in the sector. Following my letter sent to Health Secretary Jeremy Hunt earlier this year I have now been granted a meeting to discuss the benefits a National IVF Tariff would bring – a great first step to levelling the playing field and helping our NHS to help more people. The time for action is not tomorrow, not someday in the future, but now.

[hawaiibaby]

Completely agree. It is massively unfair that some people don't get to access treatment at all, while others are offered the full 3 cycles. I'm in the East Midlands and we were offered one free cycle (which we were very grateful for) and no wait. Other people I know in different areas have been offered 0-3 and some with a huge wait, which would further negatively impact both their fertility and emotional and mental distress. There really needs to be a fairer system and I think this would also go some way towards acknowledging infertility as a medical condition which is deserving of treatment.

[BlueberrySquash]

We're in Essex and IVF has been completely withdrawn from the NHS. Are we less deserving because we live a few miles down the road from another couple paying the same taxes yet receiving IVF? It's totally unjust.

[wannaBe]

personally I think no IVF should be available on the nhs, and I speak as someone coming from a positiono f secondary infertility.

In a landscape where provision for existing conditions is over-stretched to the limit, we should be concentrating on saving existing lives not creating new ones.

£200million on a system which has on the whole around a 30% success rate is not money well spent and should be better appropriated elsewhere.

[maamalady]

Absolutely agree. We were lucky enough to be offered three IVF cycles - and as luck would have it we conceived DD on the first cycle. I think those misguided individuals who think IVF should not be NHS-funded would do well to remember that access to three cycles does not mean that every couple will need three cycles.

[boldlygoingsomewhere]

Part of the problem is the perception that the state of being childless is not an illness when in fact infertility is a medical issue in most cases. A healthy human being is fertile- infertility is often a symptom of a medical problem.

It would also help if the system of diagnosis worked more smoothly. I have PCOS but didn't find out until I tries to get pregnant and had struggled to conceive for 2 years. I then had to go through investigations before finally being offered IVF (1 cycle) 2 years after the original diagnosis. This then pushed me into the age bracket when success rates start to drop. It feels like the odds are stacked against you all the way through.

[boldlygoingsomewhere]

*tried

[Francoitalialan]

I agree there shouldn't be such a disparity in provision but a financial cap isn't the way forward. The reason being, IVF is one of the very few treatments which "pass or fail" and most are supplied by private providers delivering a service to the NHS. Therein is the problem. Commissioners are likely, in the face of a price cap, to choose the cheapest, not the best clinics. So even if the NHS is able to equalise the number of cycles provided, that doesn't mean they're giving couples a level playing field. The difference in results between the most successful and the least successful clinics is VAST even when factors such as age and previous medical history are taken into account.

The most equitable way to ensure that the highest number of couples get the best treatment is for the NHS to negotiate hard with the most successful clinics for a fixed price based on volume of patients referred and then funnel all patients to them.

Sending patients to clinics with consistently poor results is the greatest waste of money of all.

[sparechange]

WannaBe, that is a staggeringly over-simplistic view.
The NHS doesn't only exist to save lives. There are billions spent each year on improving lives, improving mental health, reducing pain and discomfort from chronic conditions.
If I can go to my GP with a knee, thyroid, kidney etc that isn't working properly and reasonably expect to be referred on to a specialist who will fix me, why can I not expect the same if it is an ovary that isn't working properly?

[StitchingMoss]

Hear hear sparechange! I'm so tired of hearing the hackneyed old argument that the NHS is only for saving lives. I've spoken to my brother about this who works in the NHS and he said if he only treated people who's lives needed saving he'd probably only need to work one day a week. It's nonsense.

The NHS is struggling but refusing IVF is not the answer to the funding crisis. My IVF conceived son (incidentally conceived without a penny of support from the NHS) will pay back in taxes many times more than he would have cost to conceive.

[Snowqueen2014]

I feel that everyone should get three rounds of ivf. As for those that think it shouldn't be available on the nhs I totally disagree we don't choose to be infertile and as people say it's a medical issue and I for one hardly ever use the nhs before this.

[Highlove]

What sparechange said. As others have eloquently pointed out, the argument that the NHS is only fit saving lives is fundamentally flawed. Ever hung out in A&E on a Sunday morning - it's full of football/rugby/whatever players.

More to the point, getting into a subjective debate about which medical treatments are of more intrinsic value than others will not end well, unless what you're after is a race to the bottom. which this government apparently are

[sparechange]

I wonder how much is spent by the NHS every year on treating Acne, for example.

It is something that doesn't need to be treated, other than to alleviate the anxiety caused by having bad skin. Mild eczema is the same.

I'll support the need to cut spending on IVF treatment when I see people campaigning that the NHS is too cash-strapped to treat acne and other skin complaints that are a 'lifestyle' issue.

[Francoitalialan]

Whenever I see people say that the NHS shouldn't fund IVF when there are people with cancer, I think about dickheads who say we shouldn't help refugees until "we have helped our own." And then do fuck all.

[Highlove]

Quite, spare. And where does it end - my uncle is very overweight a con a host of blood pressure, type 2 diabetes, etc, meds. He eats shit and doesn't exercise. Should the NHS treat him? Fwiw, I think they should. But is he any more deserving than somebody who's got a medical condition (which sub-fertility is) that probably isn't self-inflicted? And increasingly the evidence shows that many cancers are lifestyle-related.

That's why it's really really really unhelpful to get into a debate about what is and isn't a worthwhile treatment. Unless you want to help out a government hell-bent on royally fucking the NHS.

[yeOldeTrout]

I'm not debating, but if I'm allowed to state an opinion anyway, I would rather NHS did not fund IVF. Too poor success rate for the cost.

There are all kinds of reasons why postcode lottery comes into, and sometimes postcode lottery can allow innovation so not always bad.

[sparechange]

Trout, a couple of questions...
What is your cut-off success rate for NHS treatment? Will you apply the same logic to cancer treatment, or knee replacements?

Would a woman who has a 50% chance of having success with IVF get funding, but someone with a 20% chance not get it?

[london32]

I agree nhs shouldn't find Ivf

Success rates are abysmal and hard to correctly ascertain or compare like for like with providers

As there is clear private provision this enough

Just because someone is infertile
Doesn't mean they need fertility treatment as they may not want a baby. If they want a family, that is an additional want on top of the infertility issue. A bit like, an under active thyroid can make a person overweight. Doctor treats with medicine. But does not provide a full Lipo body overhaul.

[Highlove]

But on that basis the NHS shouldn't fund any sort of dietary or weight loss programmes because they have a far lower success rate than 30%.

Actually I think the 30% is a slightly outdated figure. And anyway, over the course of three treatments as recommended by NICE, the success rate rises to 60-70%.

It's also the case that widespread availability of a medical treatment increases the likelihood of research and development of new techniques. So NHS funding is also very likely to improve success rates in the long-run.

[Highlove]

Sorry london32 - success rates really aren't abysmal.

[sparechange]

London,
That makes absolutely no sense.
IVF isn't actually a 'cure' for any one problem. What it does is offer a fairly reliable get-around for a wide variety of sub-fertility and infertility issues. And success rates can be as high as 50% on any given cycle, depending on the age of the woman and quality of her partners sperm - I wouldn't call that 'abysmal'

An example... A woman finds out she has blocked tubes. Under your example with the thyroid, she should be presumably given an operation to unblock her tubes to allow her to conceive naturally in the future.
This operation ha a much much lower success rate than IVF, and is more expensive than IVF, so rather than using that as a cure, IVF would be used. Same end result of a pregnancy, more reliable.
Same for men with blocked testes or low sperm count. You can either treat them unreliably, or go to IVF.

So I'm afraid your example doesn't work.

And also bear in mind that IVF is a treatment of last resort for a lot of couples. They will have already been through investigations, potentially operations and possibly drug treatments.
Would you remove NHS funding for all those as well, or just IVF?

[LegoRuinedMyFinances]

The problem is that infertility may be a symptom of a medical problem but while the medical problem can be solved by removing a blocked tube, not becoming pregnant is upsetting but it isn't going to make you seriously ill.

However failure to eat properly while having diabetes causes serious medical problems which requires medical attention, as left untreated, it can cause potentially serious problems, unlike infertility.

Unfortunately, that does make the situation deeply unfair, and on that basis I would say that there should be a set number of IVF rounds per trust, and one set for each couple, with only the most serious cases of infertility being able to apply.

Then again, I think the NHS should charge for certain procedures such as treating drunk a&e patients for injuries from fighting for example or this free paracetamol for children etc.

The NHS is under serious strain and all medical departments should be under review with decisions being made as to what should be NHS funded and what may need to be cut from NHS services.

[tigerdog]

YES. The post code lottery must end. Setting prices might be a step, in my view, but as posters here show, there is plenty to do with attitudes and the view of so called women's issues, and fertility being viewed as not worthy of funding when competing for scarce NHS resources.

I had understood that, the reason IVF guidelines were not tackled as a national issue to ensure equity, was that it was unaffordable. Almost all other areas of healthcare follow NICE guidance when providing treatment, but when it comes fertility, CCGs are allowed to opt out of providing the recommended treatment to enable them to balance the books. So setting prices (and standards at the same time) may help.

I'm also very glad to see some familiar faces here challenging some of the poorly constructed arguments that IVF should not be funded on the NHS.

If a family is a 'want' rather than a 'need' then by the reasoning given above, mothers should be self-funding maternity care and paying for their own desires to have a family. Clearly that is ridiculous but where do you draw the line? The NHS is free at the point of use to treat the population according to its needs, whatever they may be. Discriminating based on the condition is simply not fair, and likewise why we don't make judgements about who does or does not 'deserve' treatment.

To those talking about success rates, did you see those recent programmes about Great Ormond Street hospital? One of the consultants talked about how they did everything they could for a sick child despite the low possibility of success. I know if it was my child, I would want them to do everything they could. Would you tell them not to bother because success rates were too low? Again, where do you draw the line on measuring success?

Anyway, thanks for speaking up for these issues and good luck with the upcoming meeting.

[Pixa]

As one half of an infertile couple, I really appreciate this thread. I'm so grateful to those who are in favour of IVF being funded through the NHS. Thank you.

[SpanglesGalloway]

As someone who was staring down the IVF route before conceiving naturally after a long wait and unexplained delays to getting pregnant I absolutely feel fairness for all. I'm thankful I didn't have to use the NHS IVF services but when this was a possibility it was devistating to me that me and my DH would not be given the same opportunities as friends in other regions. It should be equal fair and above all available for those who meet the criteria.

[maamalady]

Infertility and not getting pregnant can absolutely have serious effects on your health. Many, many people in this situation have their mental health severely affected, and take (NHS-funded) drugs to help combat it.