How London’s postcode lottery for IVF treatment makes infertility even more painful

 "Trying to figure out why your body won’t do the one thing you are desperate for it to do is deeply upsetting; trying to figure out the vagaries of the fertility postcode lottery should be unnecessary," says Lynn Enright
Illustration by Shonagh Rae
Lynn Enright25 February 2019

On a cold, dark evening recently more than 100 people who had all tried, unsuccessfully, to conceive a baby, sat in a lecture at Homerton University Hospital, hoping to embark on IVF treatment.

All of us knew the disappointment of negative pregnancy-test results; the fatigue of countless blood tests, ultrasounds and hospital appointments; the devastation of an infertility diagnosis. The doctor whizzed through her Powerpoint presentation with practised briskness. At the end of her talk, the questions from the audience focused not on the specifics of treatment (we’d all googled those) but on the so-called ‘postcode lottery’.

My husband and I are registered with a GP a five-minute walk from where we live in Hackney. There, we are entitled to one cycle of IVF with a maximum of three embryo transfers — when an embryo is placed into the uterus — as long as one of us has no children (neither of us does). A couple from Redbridge in east London, attending the same clinic as us at the same hospital, is entitled to one cycle and just one transfer. A couple from Tower Hamlets accessing IVF at Homerton is entitled to one cycle and up to three transfers, but neither partner must have any living children, even grown-up ones, in order to qualify.

The system is baffling, arbitrary and unfair, with criteria for eligibility including number of previous children, age, body mass index and ovarian reserve (the capacity of the ovary to produce egg cells capable of fertilisation). Crucially, eligibility also depends on where your GP is located and what Clinical Commissioning Group — which decides who is eligible for IVF — is overseeing the funding.

The National Institute for Health and Care Excellence (Nice) recommends that the NHS provides three full cycles of IVF for couples (including same-sex) who haven’t been able to conceive naturally, if the female partner is under 40. When women are aged 40-42 one full cycle should be offered, it says, and for women older than 42, the chances are deemed too slim.

These guidelines are not mandatory and the majority of CCGs in England do not adhere to them. In Scotland, Wales and Northern Ireland, IVF eligibility is standardised. In England there is no standard.

Of London’s 32 boroughs only Camden meets the Nice criteria by offering three full cycles of IVF. Croydon on the other hand, only 10 miles away, has not funded IVF treatment since spring 2017. Samantha Anderson is a 28-year-old nanny living in Croydon. Shortly after she and her husband got married, their doctor told them that they would need IVF to conceive. ‘We were told, “You need help but we can’t give you help,”’ Anderson recalls. ‘We came out of the meeting and we sat in the car and cried. We just didn’t know what to do.’ Croydon CGC is now saving an estimated £836,000 annually by no longer offering the treatment, but at what cost?

Last month a petition signed by more than 100,000 people calling on the Government to end the postcode lottery was delivered to Number 10. A bill, sponsored by Steve McCabe, MP for Birmingham Selly Oak, calling for the fairer provision of IVF, is making its way through Parliament. But the trend is for areas to withdraw IVF services rather than increase them. IVF is expensive and with the NHS stretched nearly to the breaking point, CCGs are prioritising front-line services.

Almost two thirds of IVF patients in England pay for their treatment rather than access it via the NHS. One cycle can cost anywhere from £4,000 to £15,000 depending on the type of treatment and the location of the clinic. Anderson and her husband are using a small windfall from a car accident to pay for treatment on Harley Street. ‘We’ve gone for a clinic that’s the lowest possible cost,’ she says. ‘The ones with the best ratings were too expensive.’

Melanie Dunn*, a 34-year-old dietician living in Ealing, says that she and her boyfriend considered moving to an area with more generous IVF provision after they were diagnosed with unexplained infertility. Eventually they decided that it would be better to use the money a move would cost to access IVF abroad if the treatment they were eligible for — a partial cycle — at the Wolfson Fertility Centre at Hammersmith Hospital, did not work. ‘The odds are only 30 per cent,’ Dunn says. ‘So IVF abroad is the next step. It’s cheaper and I hear that the level of care and communication is better.’

“the system is Baffling, arbitrary and unfair, with criteria differing depending On where your GP is located”

Both Anderson and Dunn feel disappointed with their local area and the NHS; they have faced a health crisis and been let down by confusing criteria, by poor communication and in Anderson’s case, by her borough’s complete lack of funding.

Infertility is a painful and stressful experience: a 2016 British survey of 800 people affected by it found that a whopping 90 per cent reported feeling depressed. It takes its toll on relationships, too. Although male-factor infertility accounts for up to 50 per cent of cases in which IVF is needed, men often find it difficult to discuss. (Only women came forward to speak to me for this article.) When children from a previous relationship mean that a couple is ineligible for free fertility treatment, resentment can arise. There are reports of doctors adjusting patient records to help them meet criteria — amending their BMI, for example — and my husband and I have encountered several kind and compassionate medics during the process of being diagnosed and treated for infertility. However, we have also encountered baffling bureaucracy and unclear instructions.

At that meeting in Homerton, we were told that the current waiting list at the fertility clinic was nine months. I left that room knowing that it was going to be autumn before I would have IVF and that there would only be a 30 per cent chance of success. I would have turned 36 by then and I remembered the presentation slide that showed how quickly success rates diminish with age. Once I got home, I slumped to the floor, crying. Since then, my husband and I have decided to save money so that if the cycle offered at Homerton hospital doesn’t work, we can move on swiftly to a private option. But waiting isn’t for everyone.

Kate Meakin, 37, from Croydon, was eligible for IVF before the borough stopped funding it, but even so she decided to eschew the NHS in favour of private treatment. ‘I knew the success rates were so much better for under-35s and I knew if we waited we would miss that cut-off,’ she says. She and her husband now have a three-year-old son. ‘If we had waited in the NHS, I dread to think how long it would have taken and whether we would have been successful,’ she says. ‘I feel very privileged that we were able to say: “All right let’s fund it ourselves.” I know people who’ve had to borrow money, had to re-mortgage their houses. The average person on the average wage will struggle to afford it.’

Five in six couples will conceive with relative ease. The rest of us, the one in six, watch as our friends and colleagues get pregnant; we put whole weeks, months and years on hold as we attend hospital appointments and figure out the logistics of treatment. Trying to figure out why your body won’t do the one thing you are desperate for it to do is deeply upsetting; trying to figure out the vagaries of the fertility postcode lottery should be unnecessary.

*Melanie’s surname has been changed

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