Ben and I have been together for 14 years; of those, we’ve been married for 7, and have been trying to start a family for nearly 5 years. We’ve been through 2 rounds of IVF and have been significantly impacted by the postcode lottery implemented by the Oxfordshire Clinical Commissioning Group (CCG) who have chosen to ignore NICE guidance and do not currently provide three full cycles of IVF on the NHS. We’ve also experienced confusion on the part of our GP about how many rounds of IVF they could offer us on the NHS, which has had a significant impact on us both. We are now getting involved in campaigning against the postcode lottery in the hope of securing equality of provision across the UK.
Ben always said he’d love to have children by the time he was 30, and I was on board with this plan. For the first two years of trying Ben and I were both optimistic that we’d be able to start a family naturally, so we didn’t worry too much; besides, I was enjoying just having achieved my PhD, and Ben was focussing on settling in to his career in teaching, so at that point there wasn’t a great rush. I was also really happy to be able to finally have a physical relationship with my husband after years of struggling with pain, an issue which I only managed to overcome after finally receiving psychosexual therapy on the NHS.
After three years of trying we started to wonder if everything was OK physiologically and what our options were. In 2017 we had an appointment with our GP where we discussed whether we could be referred for investigative treatments or IVF on the NHS, at which time our GP told us that, “According to NICE guidelines 3 rounds of IVF offer the best odds of success, so that’s what we can offer you”. We were obviously thrilled at the prospect of finally having the opportunity to start our family, and immediately began preparing for what we thought would be the first of 3 NHS treatment cycles with the Oxford Fertility Clinic (OFC), a private clinic which also treats NHS patients.
The first round was physically gruelling, invasive and painful, and was incredibly challenging emotionally, but at the end of the initial procedures the OFC had managed to create 5 embryos for us. One of these was replaced back in to my body a few days later (when I was still recovering from the physical impact of the egg-retrieval process, which had left me in some pain), and the other 4 embryos were frozen. Sadly, that round ended in failure just before Christmas in 2017. We were devastated, but decided that we would go back for our next round as soon as we both felt emotionally ready so as not to lose momentum with the process.
I was two weeks in to what should have been my next treatment cycle when the OFC sent us a letter from out of the blue requesting that we transfer them the not inconsiderable sum of £1,995 as soon as possible for our treatment. As the OFC had not mentioned anything to do with payment up until this point, and because we had clearly heard our GP state that they could offer us 3 rounds of treatment on the NHS as per NICE guidelines, this was a significant and unwelcome shock for Ben, who intercepted the letter first. I was staying in London for work for a few days at that time, and had already been for two invasive ultrasound scans to establish whether my body was doing everything it should have been doing ahead of the next transfer.
Ben knew that – given his own reaction to this news (which he later described as feeling like a “kick in the stomach”) – this would come as a massive blow to me as we did not have the money to pay the OFC nearly £2000 at short notice. He first contacted the clinic to find out if there had been a mistake – there hadn’t, although they did apologise for their failure in communication to alert us to the fact that the second cycle wasn’t being funded by the NHS – so he then tried contacting the bank about a loan or a credit card to pay for the treatment. His intention was to keep this news from me so I could continue with the cycle without any stress, which could possibly impact the effectiveness of the treatment.
Despite his noble intentions, the situation became too much for Ben who felt so awful at the thought of secretly taking out a loan without my knowing that that he ended up showing me the letter requesting payment from the clinic. I was devastated, and cried a lot over the next few weeks as – despite the fact that we had been working hard to save money in the hope of providing any future child we might be lucky enough to have with a good start and security in their early life – we simply could not afford to pay out nearly £2,000 at short notice that time. We were left with no option but to cancel the treatment cycle half way through.
OFC were kind enough to waive their usual cancellation fee given the poor communication on their part, and Ben contacted our GP practice for an explanation. They denied that the GP we had seen had said anything about offering us three rounds of treatment on the NHS, despite the fact that both Ben and I were both present when the GP told us this. We were naturally stunned and felt powerless and depressed to have been let down by our ill-informed GP and the NHS.
We both spent the next year trying to get over what had happened and to come to terms with the shock and disappointment of the situation we found ourselves in. I felt a great sense of loss and injustice as a result of this experience, especially given that, at that time, the NHS wouldn’t consider giving me any additional tests (such as genetic testing) or treatment for my unexplained infertility. After I got up the strength to complain that the NHS was failing to support us I was prescribed a 6 month supply of Clomid to see if this would help us on our way, but we still didn’t have any luck. I felt adrift and unsupported, and believed I had reached the end of the road with regards to being able to start a family. I felt that there was no future for me and I started to believe that I was worthless. I eventually developed high-functioning depression and at one point was signed off from work for a short time.
It soon became apparent that I needed to find some proper support, so because the NHS also don’t offer support or counselling for people affected by infertility I decided to pay for private counselling. This was expensive as I went once a week for nearly a whole year, but without this I believe I would still feel hopeless.
Eventually Ben and I decided that neither of us are getting any younger – I am now 32 and he is 34 – so we decided that we would start again on our second round of IVF, even though we would need to pay for this on a credit card so we could retain some of our modest savings. We both felt (and still feel) very uncomfortable about the idea of starting our family using a credit card, but couldn’t see an alternative which wouldn’t leave us broke and unable to take care of a child if we were lucky enough for the treatment to work.
I started my second round of treatment in March this year. Again, it was intense – 4 rounds of high-dose hormones every day, and painful injections every evening – but it worked, and I finally got a positive test result. I was ecstatic, and Ben was over the moon. Finally it looked like we would be able to move on with our lives and our family, and put everything else behind us.
Unfortunately, I had some heavy bleeding at nearly 6 weeks and arranged a scan at the local Early Assessment Unit. On the ultrasound screen they showed us two sacs – one of which looked to contain a tiny, almost imperceptible embryo – and a haematoma (an area of bleeding) underneath. We were told that there was nothing we could do about it and that it might resolve itself, and were advised to go home and to try not to worry. A week later during a scan at nearly 7 weeks in, I learned that my pregnancy had sadly ended. We were reminded that, statistically, 1 in 4 pregnancies end in miscarriage before 12 weeks, and were told that we were ‘just unlucky’.
‘Unlucky’ is a word we are finding hard to swallow at the moment, as we are also ‘unlucky’ to live in an area which chooses to ignore NICE guidelines and the harsh realities and impact of the postcode lottery for people like us. Ben and I are getting through it but we still feel bereft as we are grieving for what we have lost and struggling with the uncertainty of our family’s future. We often feel like we’ve put our lives on hold, and are now in the process of paying off our credit card and its legacy of hope and sadness. We will again need to wait and save to be able to afford to pay for yet another round of treatment without bankrupting ourselves; even then, we are acutely aware of how privileged we are to be able to find a way to pay for our own treatment in the first place, even if we do have to wait for a while. We know that thousands of people experiencing infertility are unlikely to be in this position, which only fuels my frustration that the postcode lottery is perpetuating inequality but is most likely also alienating people who are not in a position to pay for treatment themselves.
Ultimately Ben and I have each other, and we have hope. We thank our lucky stars often for our family and friends who have been amazing sources of support. We are considering all our options at the moment, including adoption, and remind each other almost every day that our family will come to us one way or another. We are finding it really helpful to get involved with campaigning to end the postcode lottery and for equality of provision on the NHS; we have already written to our MP (Layla Moran), the current Health Minister (Matt Hancock), and to the Chief Executive of the Oxfordshire CCG (Louise Patten), and are determined to continue to campaign and to speak out about our experiences until equity of provision is implemented across the UK. We’re both very grateful to Fertility Network UK for helping us to share our story, and we hope that, at the very least, this will make anyone who is going through a similar experience feel less hopeless or alone.