The Reality Of Life On The IVF Waiting List: 'I Feel At A Constant Standstill'

Four women on the devastating impact it's had on their lives.

Women on long waiting lists for IVF on the NHS have told HuffPost UK about the “devastating” and “frustrating” impacts it has on their lives, with some waiting as long as two years between their first GP appointment and treatment.

Research by the organisation Fertility Fairness revealed a postcode lottery dictating those who are accepted for IVF, with women over 35 denied NHS treatment in some areas, but not others. But HuffPost UK has learned that even among women who are accepted, waiting times can vary.

Targets for waiting times are set by local clinical commissioning groups (CCGs), meaning there is no national guideline.

Emily, 27, from Hertfordshire, was told she’d be placed on a waiting list of around 12 months for a consultation at an IVF clinic. She and her partner had already spent three years trying to conceive naturally, and six months having fertility tests.

“We were devastated,” Emily, who works as a private nanny, tells HuffPost UK. “Hearing that it could take another year on top is horrible, because you’ve waited long enough to get to that stage as it is. Time is really of the essence in this situation.”

Emily, who was diagnosed with polycystic ovary syndrome at 16, always knew she might struggle to conceive naturally, but fertility tests revealed her partner also has low sperm mobility.

Because of this, the couple were particularly keen to get the process moving as quickly as possible and decided to abandon plans to undergo IVF for free. Instead, they’ve saved to have treatment privately, which tends to cost between £3000 and £5000 per cycle.

Lyubchik Prokopchuk via Getty Images

They’ve downsized their upcoming wedding plans and agreed to stay in their rented home, rather than buy, in order to cover the costs, with hopes to begin their first cycle in December.

It’s a real financial stress because when you’re younger and saving, you don’t think that’s all going to have to go on having a child. You just assume you’re going to be able to naturally,” says Emily. “But we’re very lucky that we’re in the position that we can even entertain the idea of private treatment.”

For Siobhan, a 32-year-old project manager from east London, the only option has been to sit and wait. She and her partner tried to conceive for a year before visiting their GP, but then had another three-month wait after being referred for tests. The results provided a “frustrating diagnosis of ‘unexplained infertility’”, and the couple were put on an IVF waiting list in January 2018. They’re due to start IVF at the end of December, a full 11 months later.

“In the time that we have been trying to have a baby, so many of our friends have announced pregnancies, and had their babies, and I constantly feel like I am at a standstill, with time just passing me by,” says Siobhan.

“Over the past two-and-a-half years, there’s not been a day where I haven’t thought about infertility and having a baby, and it’s draining. You try so hard to remain positive and not give up, but ultimately it does change you as a person.

“I’m definitely not as happy or relaxed as I was before we began seeking treatment, and don’t ever feel like the anxiety I have from this will ever go away.”

HuffPost UK

Almost half (48%) of clinical commissioning groups do not offer NHS IVF to women aged 40-42, according to the recent Fertility Fairness report, despite this going against guidelines set out by the National Institute for Health and Care Excellence (NICE). What’s more, 10% of CCGs refuse access to IVF on the NHS if women are over 35.

Claire, an IT Manager, from Birmingham, was hyper-aware of the passing of time when she first sought fertility support at her GP surgery in October 2017 at the age of 39. She’d been trying to conceive with her partner for more than two years, and had to wait until January 2018 for the referral for tests to come through. The results suggested the couple’s issues were likely “age-related”, only making the clock sound louder.

“We had to chase a lot to get things moving through the system,” Claire, now 40, says. “I was very concerned and worried due to my age, the length of time the process was taking and if we would be eligible for any NHS funding. It was a very stressful time for us both until a decision was reached by the NHS.”

She was accepted for IVF in March of this year, but had to wait until July for the first consultation. More than a year after her first GP appointment, she’s currently in the initial round of treatment.

For many women seeking IVF, the waiting game doesn’t end when their appointment date comes through. Kat Maguire, 37, from Belfast, says the fertility clinic at her local NHS hospital was right next to the area for expectant mothers, meaning she was surrounded by pregnant women and constantly worried about bumping into colleagues who were expecting. “The waiting times in the waiting room were always ridiculous,” she adds. “You sat for hours, often with an uncomfortable stomach from all the injections.

“Weirdly, the people in the waiting room didn’t talk to each other. [Maybe] this was because everyone was acutely aware of the reason we were all in the room together, and because people are embarrassed to talk about fertility issues.”

Kat and her partner have now been trying to conceive naturally for six years. Two of those years were spent trying to access treatment on the HSC (Northern Ireland’s NHS), with long gaps between tests and a wait for the green light. Unlike some areas, which offer up to three cycles of IVF for free, CGCs in Northern Ireland only offer one round. Kat’s initial cycle was unsuccessful, so she took out a loan of £8,000 to pay for two cycles of private treatment, which also failed.

For Emily, recent reports linking improvements in IVF to a decrease in adoptions provided another level of frustration. “Just because we can’t conceive naturally, it doesn’t mean we should be penalised for that and that we should be told ‘you should just adopt,’” she says. “It baffles me that they can try and lay the blame on people who are already going through something that’s quite horrific.”

She estimates private treatment will cost her around £11,000, but says she doesn’t regret a penny of the money spent to access faster treatment.

“It gets to that point of desperation where you’ll do anything,” she says. “It sounds crazy, I’m sure, to someone who’s not going through it. But you’d pay anything, and I’m sure people who’ve got a child would say they can’t put a price on what they’ve got.”