Amber Izzo had been trying for a baby for two years when her doctors diagnosed her with two blocked fallopian tubes, and told her she would need to use IVF to conceive.
But a year later, the 24-year-old is no closer to becoming a parent – and not for medical reasons. Instead, it’s because her local NHS fertility clinic has cancelled services, after the funding was cut by the Cambridgeshire and Peterborough Clinical Commissioning Group (CCG).
This means couples like Amber and her husband Marco can have tests to diagnose infertility, but can no longer access the treatment recommended for free via the NHS.
“The infertility diagnosis is the hardest thing I had ever had to deal with. But knowing that if I lived 10 minutes up the road I’d get it on the NHS has made things harder,” Amber, 24, tells HuffPost UK.
The service was originally suspended in September 2017 to save money – a decision that was due to be reviewed in April 2019, but was repeatedly postponed. Last week, the CCG finally made its decision, by confirming it will not be reinstating services in the foreseeable future – cementing itself as the fifth CCG in England to cut all IVF services.
The long-awaited announcement came as a devastating blow to the couple, who have “always wanted children”.
“It felt like they had been dangling a carrot in front of our faces to then just snatch it away,” says Amber. “For such an emotional topic, it didn’t feel like they were being particularly sensitive about the way it was handled.”
People in Cambridgeshire wishing to undergo IVF now face the prospect of paying for private treatment, which costs between £5,000 and £7,000 per cycle. Of course, there are no guarantees a cycle will be successful and some patients may opt to repeat the process.
For Amber and Marco, private treatment will be even more expensive, because they will need to use intracytoplasmic sperm injection (ICSI), a special type of IVF recommended for some health conditions, which costs an additional £500-£1,000 per cycle on top.
“People keep asking why we don’t just move but financially we wouldn’t be better off doing that,” Amber explains. “My husband is self-employed, working from home with a very local clientele, so by moving we also jeopardise his business.”
Alongside Cambridgeshire and Peterborough, the CCGs of Croydon, Basildon and Brentwood, North East Essex and Mid Essex have all cancelled free fertility treatment in recent years, citing financial pressures.
But it’s not just the closure of services campaigners are concerned about. Data collected since 2013 by the campaign group Fertility Fairness illustrates a quiet and sustained disinvestment in NHS fertility services.
The vast majority of CCGs across the country (88%) do not currently offer three NHS-funded IVF cycles for women under 40 – directly contradicting guidelines set out by The National Institute for Health and Care Excellence (NICE).
In the last two and half years alone, one in five CCGs (21%) have slashed services by cutting the number of IVF cycles they offer, decommissioning services, or introducing prohibitive access criteria, such as withholding treatment if a man is over a certain weight.
Almost three-quarters (70%) of CCGs offer just one cycle; 15% provide two IVF cycles and just 12% provide the recommended three IVF cycles, according to the data.
[Read More: The reality of life on the IVF waiting list]
Tracey Bambrough, co-founder of the fertility magazine IVF babble, says the decisions made by CCGs can “be the difference between having a family and not having a family” for some people.
“We’ve heard so many stories from our followers and community, many of whom have said they have had to give up on their dream of becoming parents due to insufficient funds,” she tells HuffPost UK. “Others have put
themselves into thousands of pounds worth of debt to pay for private treatment.”
Eleanor Jordon and Richard Heeps are also now facing the financial burden of private IVF. The couple “seriously considered” moving from their central Cambridge home when the service was initially suspended, but say the money they’d lose during the upheaval “didn’t make sense in the end”. The pair, who are both artists, are now looking into fundraising options using the arts.
Eleanor, 33, had two ectopic pregnancies in 2014 and 2015 and needed to have both fallopian tubes removed. Because of this, she now requires IVF to conceive.
“The experience was very traumatic from a medical and emotional point of view,” says Eleanor, who has developed a fear of the doctor’s after her experience. “When I visit my GP for the simplest thing my heart races and I leave in tears. The uncertainty and waiting on the CCG has meant many emotional blows and each time it is difficult to lift up from them.”
As part of their review, members of the Cambridgeshire and Peterborough CCG say they monitored the potential impact experienced by mental health services as a result of the decision. The decision has had “no significant impact on the use of mental health provision”, they claim.
But Natalie Church, who is now considering private IVF treatment with her husband, Darren, finds that hard to believe.
“I will never be able to articulate fully how much this has effected us,” the 31-year-old from Peterborough says. “Imagine telling not only your partner but your families that you can’t have children, constantly avoiding the inevitable ‘so when are you having children’ question. Knowing that the choice has been taken away from not only us but other couples is truly awful.”
The postcode lottery has had a negative impact on her mental health and she worries about the impact on her relationship with her husband.
″[I’m] sat here in tears thinking he’d be better off without me as I’m the problem. Everywhere you look someone is pregnant and then you feel horrible about being so bitter,” she says. “Some days even getting out of bed is a struggle – the idea that this decision won’t affect their mental health resources is a joke.”
Amber Izzo has used mental health services while waiting for the recent review. She was prescribed anti-depressants around Christmas time when she “had hit an all time low”.
“I’d wake up every day and just not want to be here. It impacted my marriage, I was angry at the world, I cut myself off from a social life and I just constantly felt like life wasn’t worth it,” she recalls. “A life without children isn’t something I’m prepared to accept and I felt so guilty that my husband, his family, my family, were all having to go through this because of my diagnosis.”
Although she’s in a “better place now” and has blogged about her experience to help others, she adds: “I still have days where I just want to eat my weight in chocolate and cry because it’s so hard.”
Funding is, unsurprisingly, at the crux of the matter and it seems there is some debate about whose responsibility it is to implement change.
In June, former Health Minster Jackie Doyle-Price urged CCGs to abide by NICE’s IVF guidelines and end the “postcode lottery” in an open letter, saying: “It is unfair to patients with infertility, who have every right to expect NHS services based on clinical need… All CCGs should move towards full implementation of the NICE fertility guidelines recommendations.”
A Department of Health and Social Care spokesperson also placed the onus on CCGs, telling HuffPost UK: “Patients should have fair and equal access to NHS infertility treatment when they need it, no matter where they live.”
“While many areas are making progress, it is unacceptable for any local Clinical Commissioning Groups not to offer routine access to fertility services and we expect them to fully implement these guidelines,” they added.
But CCG executives say their hands are tied, due to lack of investment in the NHS. Following the latest announcement in Cambridgeshire, Dr Gary Howsam, clinical chair of the CCG, said in a statement: “Clinicians and managers alike acknowledge that this was a difficult decision to make and would have an impact on individuals and their families, but that in the current financial climate, it was not reasonable to reinstate the service.”
The original decision to pause fertility services has saved £598,000 in the last financial year and is forecast to save £700,000 per annum in the future, “which can be used to fund a range of other vital healthcare services”, the CCG added.
[Read More: This is what it’s like to navigate IVF at work]
The CCG declined to give further comment for this article. The governing body has committed to reviewing the decision as and when the CCG is operating in a financial surplus, but that could be some time.
The Cambridgeshire and Peterborough CCG is the third lowest funded CCG in England, receiving significantly less funding per head of population than all neighbouring counties. Heidi Allen, MP for South Cambridgeshire, has pointed out the formula used to dictate funding “has typically been unable to respond quickly to the demands of a rapidly growing local population”.
As such, Cambridgeshire, which has “seen its population growth rocket over the past five years” has experienced “a shortfall in per patient funding causing a cumulative shortfall over the past five years”, she said in June.
Sarah Norcross co-chair of Fertility Fairness has urged the new Health Minister Caroline Dinenage to take action. “A woman in Cambridge is no less deserving of treatment than one in Bury St Edmonds or Newcastle. When about 200 CCGs can offer at least some form of service one has to wonder why five cannot find the budget to do so,” she tells us.
For now, couples like Amber and Marco, Eleanor and Richard and Natalie and Darren can only hope someone somewhere will change their policy.
“Knowing that time is ticking away and worrying you won’t ever be a mum, won’t ever feel your child kicking won’t ever hold your new-born baby in your arms is awful,” says Natalie. “I can’t believe that they have decided this is the best way to save money. I hope not just for me, but for everyone, that they come to their senses and rethink their decision.”