Lincoln mum’s campaign to end NHS IVF postcode lottery gets results for parents in Lincolnshire, Rutland and further afield

For many couples struggling to conceive, in vitro fertilisation (IVF) can be the answer to their prayers.

However, the treatment available free of charge on the NHS can vary from county to county, depending on the guidelines set down by the NHS integrated care board where you live.

It’s a postcode lottery which can add further uncertainty and heartache to an already difficult journey. We spoke to two mums about their contrasting experiences.

Sarah Curtiss launched the My Fertility Matters campaign in April 2021, determined to remove the NHS postcode lottery which barred her from having a child of her own.

A doting stepmum to Lily, Sarah, from Lincoln, struggled to have a child with her husband because of polycystic ovary syndrome.

But when she turned to help, she was horrified to discover that current guidelines in Lincolnshire make couples with children from a previous relationship ineligible for funded IVF treatment through the NHS.

The policy is shared across all five ICBs in the East Midlands - but not in every part of the country.

“We realised there was a massive postcode lottery across the country,” said Sarah.

“I know there are certain locations across the country already that if you’re a stepparent and your partner has a child from a previous relationship you’re still eligible, but there are some locations, including Lincolnshire, where at the moment you’re not.

“So we wanted to make that difference so we launched the campaign and it gained a lot of traction very, very quickly.”

The My Fertility Matters campaign attracted celebrity and MPs backing, and eventually got results, with ICBs across the East Midlands agreeing to remove this restriction as part of a wider review.

For Sarah, the relief was overwhelming.

“I think I sat and cried for a good 10 minutes - it was an unreal experience,” she recalled.

“Knowing that I can change the lives, not just of my family but for families across the East Midlands, is massive and very rewarding.

“It’s a massive achievement, not for me, but for all the women who have previously gone through this change. And men as well.

“In our situation it’s me with the infertility, but it could be the other way around with the stepdad that’s having the issue.”

But it is, she insists ‘just the start’.

“We’re hoping that once we can have this change set and in place then we can pass this on to others across the country and make sure that there isn’t that postcode lottery.

“To have an equal opportunity no matter where you live is really important.

“Some people have had to move to be able to be eligible and you shouldn’t have to move your entire life to be eligible for something that is really life-changing like that.”

The changes to eligibility in the East Midlands will ultimately create one uniform set of criteria for all of its ICBs - Leicestershire and Rutland, Lincolnshire, Nottinghamshire, Derbyshire and Northamptonshire.

“NHS Lincolnshire ICB is part of an East Midlands-wide IVF policy and we are working with colleagues in these ICBs to review this policy,” said a spokesperson.

The review is yet to be complete after delays in updated guidance from NICE, the National Institute for Health and Care Excellence.

NHS Leicester, Leicestershire and Rutland said they hoped the updated NICE guidance would be available in May this year, but were told it had been considerably delayed.

An initial target date for the new policy, set for the end of summer 2024, has now been pushed back to April 2025, with consultation likely to take place later this year.

While the East Midlands boards look to follow the same guidelines, just over the border there are differences in neighbouring Cambridgeshire and Peterborough.

Across the East Midlands one full cycle is funded, but Cambridgeshire and Peterborough do not currently offer a full cycle.

Patients there were also not eligible to free cryopreservation - the freezing and storage of fertilised eggs.

It was a different story for those living just a short drive away, with all East Midlands ICBs funding this for up to three years.

For now, 29-year-old Sarah’s seven-year wait for a baby goes on.

She has lost count of the disappointments and false starts, but the magnitude of what could be is a huge spur.

“The amount of negative tests that I’ve seen is probably ridiculous at this point,” she said.

“To one day see that positive test is what keeps us going.”

She added: “I love my stepdaughter Lily to absolute pieces.

“She’s a big part of our family and me and her are best friends, but to have my own would fill the missing piece in our family and join us all together.

“Ever since I was little I’ve played with dolls and always wanted to be a mum.

“Being a stepmum is one of the biggest honours in the world, but to have my own as well and to have that process of the pregnancy - the first scan, those things that I’ve missed not going through the whole pregnancy and labour - it’s just something that I crave and it’s natural to do so.”

Sarah dreams of a similar outcome to Rutland teacher Jane (her name has been changed to protect her identity).

Her journey through NHS IVF ended positively, with a baby daughter in July 2022, but the extraordinary high did not come without emotional low points and uncertainty.

“My husband and I were trying and didn’t have any luck naturally so we went to see the doctor,” she said.

“Because I had endometriosis they said don’t wait for a year - which is the normal length of time - wait six months before coming to us.

“Birth control is a very good way of controlling endometriosis, but you obviously come off that to get pregnant.

“After six months of trying, my symptoms started to get worse so that’s why they said six months.

“You have to push sometimes with things like that. Even though one doctor has told you to come back after six months, someone else may tell you ‘our policy is a year’.

“I definitely feel sometimes you need to be the sort of person that doesn’t mind being forthright at times, and I’m sure there are people out there who aren’t like that.”

While prospective parents must have treatment in their allotted postcode area, Jane could at least leave the confines of her postcode for tests.

It proved a blessing.

“I had the tests all done at Peterborough because the waiting list at Leicester at that time was huge,” she recalled.

“They were really rapid which was fantastic.”

After qualifying, Jane, then 38, began treatment in Leicester around seven months later.

Then she faced a different kind of lottery - the nagging uncertainty and high stress of whether treatment would actually work.

At first it seemed their hopes would be dashed.

“They started doing the long protocol, all the injections to shut your body down, and then you boost it back up again and that takes a few weeks,” she explained.

“When they started to boost it back up, they do a blood test. They said I wasn’t really responding to the boosting drugs, then the scan showed follicles weren’t really growing.”

After persisting with injections for a few more days, the next scan showed no improvement.

“They then said, basically, the consultant wanted to cancel it, and that was devastating,” she said.

“I just assumed that was it, that my body wasn’t going to be able to do anything with IVF.”

But then came a lifeline.

“They rang me back and said the consultant will give it another try because they didn't get to egg collection, the actual operation - they’d just done the drugs.

“The consultant agreed to give it another try administering the drugs differently so we did a short protocol.”

A decision made at one consultant’s discretion.

A different consultant may not have leant this way. More lottery.

“We ended up starting it in October,” Jane continued.

“Instead of shutting your body down they wait until your cycle starts and then you stop boosting your natural hormones and that one just worked.

“We got six eggs, which isn’t loads, four of them were viable, three were mature and fertilised, two were put in and one of them was our little girl!”

She added: “It’s a massive game of diminishing numbers when you get a bit older.

“We just had those two - the third one we couldn’t freeze because it wasn’t good quality, so we are just incredibly lucky that it worked.

“Our experience on the NHS was very positive.

“I feel very lucky that our consultant said ‘no, we are going to try administering this a different way, we’re not counting that as a try’.”

Jane and her husband Simon are going down the route again, trying for a second child, but this time must pay.

She appreciates that not everyone can afford the option of a second attempt.

No NHS lottery this time, but still the lottery of life.

“The process takes about a month but there’s so much more to it than that,” she explained.

“The problem is you’ve probably got into a mindset before then that whatever you’re doing is the thing preventing you from getting pregnant.

“Am I doing too much exercise, am I not exercising enough, am I drinking too much caffeine? Do I not drink enough water?

“You change your life to try and get the best outcome and that’s really hard.

“And then each month you get your period it’s just awful.

“It’s the days before you start to get that sensation, but then you’re still hopeful at the same time. I think that’s probably the hardest.

“Every cramp, every little pain is really emotionally wrought.”

But the pay-off is beyond value - the consolation of every parent’s endless to-do list and sacrifice.

“She’s great. As a baby she was really good, pretty chilled, and slept well.

“She is starting to say words, which is fun. She is starting to tantrum, less fun, but she's just really good fun to hang out with. We feel incredibly lucky.”

An emotional rollercoaster with no guarantee of success

A fertility nurse has described the emotional rollercoaster patients experience when going through IVF treatment.

Bev Kimminau manages the Bourn Hall Fertility Health Suite which recently opened at The Broad Street Practice in Stamford.

For many people the emotional and financial burden of IVF weighs heavy - particularly when it has a success rate of just 30 to 40%.

To be referred for NHS treatment, patients must usually have been actively trying to conceive for 12 months whereas private patients can seek help at any time.

Bev said: “Most people have already been on a huge journey before they even get through the door and the NHS is so overstretched that there is an inevitable wait after that. Some people will wait months before they get a first appointment.

“Taking on new patients can be challenging because they are often well-informed by the time we see them and know exactly what they want. We have to manage their expectations.

“It’s a huge emotional rollercoaster and there are so many hurdles for them to jump.”

Bev has previously worked for the NHS but now works for Bourn Hall, which was the world’s first assisted conception clinic and was responsible for the birth of the first “test-tube baby” Louise Brown.

Whichever route people take, the process is the same although those seeking treatment privately will pay between £7,000 and £10,000 for each round. Women will undergo blood tests and scans and men will submit a sperm sample before their first appointment. After that the treatment continues in stages:

• Women will self-administer daily injections to suppress their natural menstrual cycle.

• Fertility hormones are taken to stimulate the production of eggs.

• Scans and blood tests are performed to monitor egg production.

• A 30-minute procedure under sedation sees eggs collected using a needle passed through the vagina into each ovary.

• The eggs are fertilised in the laboratory using the sperm sample.

• Embryos are transferred into the womb using a catheter in a 30-minute procedure.

• A pregnancy test can be taken after 11 days.

In cases where the treatment has been unsuccessful, nurses will continue to support their patients.

Bev said: “From a clinical point of view, we want everyone to be successful and we try our hardest to make that happen. When it doesn’t happen we offer support and a counselling service, and will always recommend a review to see what we could do differently if the couple chooses to try again.

“I’ve been through IVF myself and had successful and unsuccessful treatments. When I say to couples that I understand what they are going through, I really do. I think I can offer really heartfelt empathy and provide the support that I experienced and also the support I think I would have benefited from.”

Bev is keen to see fertility spoken about more openly so people can feel less isolated when going through IVF treatment.

She said: “Women are more open than men about their fertility journey. Men will often bury their heads in the sand because there seems to be a stigma about male fertility and we need to change that.

“Times are changing but I think we need to be really proactive in making it acceptable for people to talk about what’s happening. One in six couple will have fertility issues and we all need to be more open about that.”