Why I dare anyone to tell me the NHS was wrong to pay for my IVF
LAST night I crept upstairs to check on my sleeping children. Their room was in typical chaos. Chloe, who turns five next month, wasn’t in her bed — instead, rows of dolls and stuffed toys filled the space where her head should have been. She had climbed into 20-month-old Max’s cot.
They’d clearly been playing; toys and books were strewn around them. The two of them took up the whole mattress — limbs spreadeagled, blonde hair fanned out as they breathed in unison, fast asleep.
I paused, leaning over the cot, overwhelmed with gratitude that I’m their mother.
Most parents would feel the same, but perhaps the feeling is stronger for mums like me — because my children were born after I had endured years of illness which eventually necessitated IVF treatment.
To me, IVF is one of the greatest medical advancements of our age, one that brings so much hope and joy to those who, through no fault of their own, suffer the pain and devastation of infertility. So it was with sorrow that I read earlier this month how increasing numbers of women like me are being denied fertility treatment to save money.
Thirteen areas in England have introduced cuts or stopped providing fertility treatment since the start of the year. Eight more are consulting on restricting services, according to figures from Fertility Network UK.
Over the past four years, the number of clinical commissioning groups (CCGs) in England offering three full cycles of IVF has fallen by 46 per cent, from 50 in 2013 to 27 this year. The National Institute for Health and Care Excellence (NICE), which advises the NHS on best practice, recommends that women under 40 should be offered three cycles if they have been trying to conceive for two years, which means cost-cutting CCGs are defying advice set out by the NHS’s own advisers.
A study published in 2015 revealed that the chance of a live birth was 30 per cent for the first cycle, increasing to 45 per cent after two cycles and 54 per cent after three. So the more you have, the higher your chances of success.
It’s prompted fears of a postcode lottery for couples trying to have children.
In Bath, where I live, you only get one go on the NHS, costing around £5,000. And every day I am thankfulf l th that t money was available to me. Some may say, because I’m lucky enough to belong to the privileged middle classes and have access to private money, that it shouldn’t have been. But I believe IVF should be available to every woman who needs it.
Those who see IVF as a luxury have never experienced the pain of not being able to have a child, in my case by far the worst side- effect of my poor health.
Far more than a lifestyle choice, the desire for children is a biological need, a longing which, if it is denied, can cause untold pain.
And anyway, so much infertility is (as mine was) a side-effect of other illnesses and so should be treated by the NHS just like the condition which caused it.
I’ve known since I was a teenager that it was unlikely I’d ever conceive naturally: I was born with Hirschsprung’s Disease, a disorder of the abdomen that occurs when part or all of the large intestine has no nerves and so cannot function.
When I was three days old, they operated, removing the segment of my bowel that didn’t work and creating a colostomy that was reversed nine months later. I was supposed to be cured, but sadly I wasn’t, and major surgery was needed again when I was 12, 16, 17, 19 and, finally, 22.
These lifesaving operations left me with so much scar tissue that my fallopian tubes were mostly blocked. But I grew up, got better and moved to London, where I got a job on this newspaper and, at 25, fell in love with Ed, a handsome young soldier.
We married in 2009, and soon after I saw my GP, who referred me to Bath Fertility Centre for tests. The results were cautiously positive. Despite it being (the doctor’s words) ‘a bit of a mess in there’, my tubes were not 100 per cent blocked and the consultant said there was a chance I could conceive naturally.
STILL,it was so slim they were willing to proceed with IVF immediately. But after spending the best part of my formative years in hospital, I was determined to try for a baby without medical intervention.
Months went by with no pregnancy. I fought disappointment by throwing myself into other aspects of my life. I got a fulfilling job as head of PR for the charity Help for Heroes; I wrote a book; I taught myself to cook smart dinners and we hosted friends; we attended raucous Army parties; travelled, and got a gorgeous puppy. But there was something lacking at the centre of life.
Couples who had met long after us would announce their pregnancies and I would cry.
Only women who have been through infertility can really understand the mixed emotions. The loss you feel each month when your period comes, the physical pain of longing when you see a small baby and the guilt as friends tell you their good news. All you can think is: ‘When will it be my turn?’
We started the gruelling process in December 2011. My childhood spent in hospital was the perfect training, since the injections and examinations seemed easy in comparison. But intense hope makes the seven-week process very stressful. After drugs to suppress your own hormones, you start self-injecting for ten to 14 days to help your body produce multiple eggs. If this is successful, eggs are collected while you are sedated and fertilised with your husband’s sperm in the laboratory.
WEWERE lucky. Five days after egg collection we were told we had two viable blastocysts (the stage before the cells become an embryo), one of which was implanted, the second frozen for potential use in future.
Then came the agony of waiting. When I did a pregnancy test, I didn’t believe that faint line. It had worked! A difficult pregnancy followed, and frightening birth, but I was a mother — to the most perfect tiny girl.
That should have been it, but I couldn’t get our frozen embryo out of my mind — that tiny spark of life waiting for a chance to grow.
The odds were not in our favour: successful frozen transfer rates (those that survive the defrosting process and go on to become pregnancies) at Bath Fertility Centre are in the region of 31 per cent.
And our odds — to get two babies from one round of IVF and one frozen embryo transfer — were around 6 per cent. We didn’t believe it would work.
But in December 2015 Max was born, our precious second child, and we became a family of four. We had won the IVF lottery.
Because of the rule that restricted IVF to one round, we paid for the process which gave us Max. But because we already had an embryo, it cost around £1,000 (the expensive bit of IVF is creating the embryo).
It was obviously worth every penny. But that first round of IVF? Yes, we deserved to have it on the NHS, regardless of whether or not we could have afforded it.
Who could tell the women who can’t conceive due to cancer treatment; those with fibroids or endometritis; or the military couple for whom an explosion in Afghanistan ended their dreams of parenthood, that they don’t deserve NHS funding to try for one longed-for child?
After what I endured due to bad luck — an illness I was born with — is the existence of my children not worth the money spent? Infertility is
the hidden disease that those with children (or who don’t want to have them) don’t understand, and it’s seen as an easy target when funding decisions are being made.
But where do these cuts stop? What other treatments could soon be seen as a luxury, a choice?
So much of our NHS is burdened by people who have indirectly chosen to be in a hospital bed: smokers continuing to poison their lungs, people who eat their way to obesity getting diabetes or needing gastric band surgery.
At the weekend, A&Es are filled with drunken idiots ruining their livers, while injuring themselves in fights and falls. What about sports enthusiasts, who hurt themselves during dangerous activities? Is their plaster cast and morphine drip a luxury?
Or those seeking gender realignment. Controversial, perhaps, but I argue that not only is the mental anguish of infertility equal to theirs, but that the children born, as a result of IVF, into our aging society, offer a collective benefit, adding to the greater good.
Just before Max’s first Christmas, we made a very important visit to introduce him to the people who had helped ‘make’ him.
David Walker, our consultant, the embryologists, nurses, receptionists and counsellors — all the skilled, dedicated people at Bath Fertility Centre who had helped me and my husband become parents, and who did so with love and compassion.
Seeing both children with Mr Walker, and Max in the arms of the embryologist who had watched him grow when he was just a cluster of cells, I gave a silent prayer of thanks for the miracle of science, and those who work tirelessly to make dreams come true.
Thank you NHS.
HELEN MILLER
HElEN is a fertility nurse specialist who joined Bath Fertility in 2005 after 20 years as a midwife. Helen did the transfer of Chloe as an embryo into my uterus, and was there for the six-week scan that confirmed the pregnancy.
She says: ‘I feel very privileged to be part of the fertility process. The feeling of gratification never ceases — that you’ve had a hand in helping this couple create a family of their own. They have a real connection with us as fertility treatment is such an intimate part of their lives.’
EMMA NAPIER
EMMA joined Bath Fertility in 2012 as a clinical embryologist. Emma says: ‘It makes my day when patients return with their family. You realise you’ve played an amazing part in someone’s life.
‘Much of what I do is at the cutting edge of fertility science. Kitty and Ed’s son, Max, was created through frozen embryo transfer. We used a process called vitrification; this is where a series of specially designed solutions are used to freeze the embryo.
‘The solutions quickly dehydrate and stabilise the embryos before they are plunged directly into liquid nitrogen and stored.
‘Freezing embryos for future fertility treatment avoids the need to go through another round of IVF treatment.’
CAROLE KIRKWOOD
HEAlTHCArE assistant Carole was there every step of the way, warm and welcoming, reassuring. She has since retired.
DAVID WALKER
CONSulTANT obstetrician David Walker has been based in Bath since 1996. He was involved in my care from the initial consultation at the fertility clinic, to egg collection and helping us navigate two difficult pregnancies with superb ante-natal care.
David was due to deliver both my babies but, unfortunately, they had other ideas — making early arrivals via emergency Caesarean section both times.
He says: ‘ In no other branch of medicine do we gamble with our patients’ treatment and their lives. First, there is the lottery of the postcode to determine whether they can access any treatment on the NHS at all.
‘Then, in most cases in England now, they are allowed only one roll of the dice, to see if they get lucky and get pregnant.
‘NICE has carefully considered the provision of IVF, and rightly judged that three cycles constitutes a course of IVF treatment with a decent chance of having a baby. One cycle is just gambling.
‘But for me, seeing daily the desperate struggle that couples go through in their longing to have a family, and the financial and emotional costs they face, is more than compensated for by the utter joy on their faces when they introduce the team to the new member of their family.’