“I won’t ever get to experience carrying a child. I won’t get to have my baby that I grow and that I feel move, and that’s really hard.”
These are the words of Steph Coath, a 38-year-old woman who is unable to access NHS IVF because of her age.
Despite official recommendations stating women should be eligible for IVF up to the age of 42, Steph’s local clinical commissioning group (CCG) has decided it will only offer treatment to women under 35.
But Steph is not alone. HuffPost UK can reveal that one-in-nine CCGs that offer IVF in England has opted to block women under the age of 40 from receiving treatment.
In many cases these commissioning groups, which decide how money is spent on healthcare locally, rule that women who need IVF must be referred – or even start treatment – before their 35th birthday.
While most CCGs say they will reconsider otherwise ineligible women in “exceptional circumstances”, these rules still mean a woman’s window to access fertility treatment – and ultimately have a baby – can differ by as much as seven years depending on where she lives.
It is a postcode lottery charities have slammed as “shocking” and “desperately unfair”.
CCGs Implementing Their Own IVF Age Limits For Women Under 40
Bath and North East Somerset – IVF should start before a woman’s 38th birthday
Berkshire West – Women must be referred by their 35th birthday and treatment must be completed within six months
Buckinghamshire – Women must be referred by their 35th birthday and treatment must be completed within six months
Cannock Chase – Women must start treatment before their 39th birthday
East Berkshire – Women must be referred by their 35th birthday and treatment must be completed within six months
East Staffordshire – Women must start treatment before their 39th birthday
Fareham and Gosport – Women must be referred before they turn 35 and in enough time to start treatment before their 35th birthday
Isle of Wight – Women must be referred before they turn 35 and in enough time to start treatment before their 35th birthday
North East Hampshire and Farnham – Women must be referred before they turn 35 and in enough time to start treatment before their 35th birthday
North Hampshire - Women must be referred before they turn 35 and in enough time to start treatment before their 35th birthday
North Staffordshire – Women must be referred for treatment before they turn 35 and undergo treatment within six months of their 35th birthday
Oxfordshire – Women can access treatment up to the age of 35
Portsmouth – Women must be referred before they turn 35 and in enough time to start treatment before their 35th birthday
Richmond – Women must be referred before they are 38.5 years old in order to complete treatment before their 39th birthday
Shropshire – Women must be younger than 37.5 years at the time of treatment
South East Staffordshire and Seisdon Peninsula – Women must start treatment before their 39th birthday
South Eastern Hampshire – Women must be referred before they turn 35 and in enough time to start treatment before their 35th birthday
Southampton City – Women must be referred before they turn 35 and in enough time to start treatment before their 35th birthday
Stafford and Surrounds – Women must start treatment before their 39th birthday
West Hampshire – Women must be referred before they turn 35 and in enough time to start treatment before their 35th birthday
Steph and her partner Tom Bier, who are based in Buckinghamshire, have recently started considering adoption.
Steph has polycystic ovary syndrome, which can make it extremely difficult, or even impossible, to conceive without treatment.
To make matters more complicated, Tom has two teenage children from a previous relationship. Many CCGs – including Buckinghamshire – say couples seeking treatment must not already have children, including from previous relationships.
The couple say private treatment is “not financially viable” for them, and moving to an area without restrictions would jeopardise their jobs.
“I could move to an area where I get three goes [of IVF], but there’s no guarantees they’ll work, so I can’t jeopardise the rest of my life for that,” says Steph.
“People say: ‘You can get a loan out for the treatment’ – but there’s no point having a baby if I’m financially bankrupt.”
HuffPost UK found that, of the 191 clinical commissioning groups in England, 20 have implemented their own age limits on IVF.
Of these, 13 insist women must be referred for, or even start treatment before, their 35th birthday.
Despite narrowing the age range for treatment, all 20 CCGs only offer women one round of IVF.
Meanwhile, five CCGs – Basildon and Brentwood, Cambridgeshire and Peterborough, Croydon, Mid Essex, and North East Essex, which is set to offer IVF again from April following a five-year break – do not currently offer the treatment at all.
The data was collected from IVF policies available on CCGs’ websites, while others were obtained through FOI requests.
Charlotte Nowik and her husband, Greg, have borrowed money from friends, family and credit cards to afford private IVF treatment.
In 2014, Charlotte visited her GP aged 34 for fertility advice after two years of trying to get pregnant. She claims that, at this stage, she was told to “carry on trying naturally” as it “can take up to four years”.
She says she was not told when her local CCG, Southampton City, brought in an age restriction later that year, stipulating that women must be referred for IVF by the age of 35 and start treatment by their 35th birthday.
As such, by the next time she visited her GP for help, and had a series of fertility tests aged 37, she was considered too old for IVF.
Hearing she wasn’t eligible was “an unbelievable shock”.
“It was just shit, to be honest with you,” she says. “It was a sunny day, we were really happy and we thought it was going to be the day we were going to start the treatment process that we’d been waiting so long for.
“The doctor turned around and said: ‘No one’s spoken to you about this, have they? You don’t meet the criteria.’ We were floored.”
Charlotte temporally moved to Brighton for six weeks in a bid to access IVF, renting a house while her husband, Greg, moved in with his parents to continue working locally.
But after having another round of blood tests, she was denied IVF again, this time on the grounds that her AMH level (a hormone tested to indicate ovarian reserve) was too low.
Frustrated, Charlotte moved back to Southampton and paid for private treatment, which sadly ended in her miscarrying twins at 16 weeks. She’s now preparing to try again privately, racking up debt in the process.
“It’s a continuous mental drain,” she says. “Personally, I don’t think it’s the right way round. I think they should only offer IVF to women over 35 – older women need help to get pregnant.
“Times are changing. Women aren’t leaving school, getting married and having children – they actually have a life.”
Guidelines set out by the National Institute for Health and Care Excellence (NICE) say women under the age of 40 should be offered three full cycles of IVF, while those aged 40 to 42 should receive one.
But the guidance is just that, and has no legal weight. And analysis by HuffPost UK reveals that the vast majority of CCGs fail to follow these recommendations, with just 15% both offering IVF to women over 40 and making three cycles of treatment available to younger patients.
In fact, almost half of CCGs (45%) do not offer IVF to women over 40 at all.
Meanwhile, only 29 commissioning groups offer three cycles of IVF on the NHS – just 15%.
The majority of CCGs (62%) only offer one cycle of IVF to women under 40, while one-in-five (20%) provide two cycles to those in need. And – despite widespread local outrage – almost 3% of CCGs do not offer this kind of fertility treatment at all.
Sarah Norcross, director of fertility charity Progress Educational Trust, called the restrictions on NHS IVF “shocking”.
“The impact on infertile couples is devastating,” she told HuffPost UK. “Facing fertility struggles is distressing enough without being told that, because you’re over 35, you won’t be able to access medical help – but if you lived in another part of the country you would be able to.
“It is a desperately unfair situation and one which needs to change now.”
She added that four of the CCGs that have imposed female age criteria, Cannock Chase, East Staffordshire, South East Staffordshire and Seisdon Peninsula, and North Staffordshire, are currently consulting on changing their IVF policy.
“We urge them to take this opportunity to think again and bring their policies in line with national guidance and treat women fairly,” she said.
Helen George, a psychotherapist specialising in therapy for women impacted by infertility, says infertility is one of the most distressing experiences for anyone who had planned to have children.
“Everyone should be entitled to treatment on the NHS and no one should be denied the chance to have a baby simply because of cost and by virtue of where they live,” she said.
“The funding cuts and postcode lottery have been devastating for many women and couples, and the mental health implications are huge, impacting on all areas of an individual’s life – including relationships, quality of life and overall emotional wellbeing.”
That has certainly been the case for Steph.
“Infertility is hard enough to deal with and come to terms with anyway, but then to find out that you won’t be helped is soul-destroying,” she says.
“I have struggled with depression and this doesn’t help. I have to now face the future childless and all because I live in the wrong postcode. I don’t know how to come to terms with this.”
In a statement to HuffPost UK, Buckinghamshire CCG said it “continues to operate in challenging financial times and we face increasing demand on our services, as do CCGs nationwide”.
It is vital that the CCG provides quality services “that benefit the greatest number of patients with the resources we have available”, they said.
“This is why we, with other CCGs in the Thames Valley area, have the current policy by which IVF treatments are managed.
“While we have every sympathy with anyone who may not be eligible for referral for this treatment under this policy, this difficult decision was made with the good of the overall population of Buckinghamshire in mind.”
Meanwhile, Southampton City CCG said its IVF policy had been developed with local health professionals and with evidence about “clinical and cost effectiveness” in mind.
“As commissioners we are responsible for making the best use of our available resources to look after the health and care needs of people in the city,” a spokesperson said.
“This involves balancing the chances of a successful outcome with the clinical risks, and also taking into account the relative cost effectiveness compared to other treatments that could be funded with the resources we have available.”
For patients who do not meet the CCG’s IVF criteria, their doctor can ask local authorities to consider exceptional circumstances.
Infographics provided by Statista.
This article originally appeared on HuffPost.