‘The IVF postcode lottery is not fair’

Hannah Newby has a chance to have the family she’s “always dreamed of” on the NHS.

The 33-year-old was diagnosed with Turner syndrome in 2023, a genetic disorder that had unknowingly caused her to go through early menopause in her teenage years and subsequently led to her infertility.

Living in Southwell in Nottinghamshire, Mrs Newby has access to only one cycle of IVF under the local NHS integrated care board (ICB) policy – but if she lived about 20 miles (32km) away in the Bassetlaw district, she would get three cycles.

As health bosses propose changes to this policy, Mrs Newby is urging them to end the “postcode lottery” and make the system more fair.

The Nottingham and Nottinghamshire Integrated Care Board (ICB) is calling on residents to share their views on the policies surrounding fertility services by responding to an online survey.

Under its current policy, Bassetlaw is the only area in the county where residents have access to three rounds of IVF on the NHS.

Guidance by National Institute for Health and Care Excellence (NICE) says women aged under 40 should be offered three cycles if they meet certain conditions.

“I think it’s crazy that we could live in the same region but we could have differences,” said Mrs Newby. “I feel it’s a right to have a family.”

Access to NHS fertility services is also dependent on other criteria, such as health, age, those with children from a previous relationship amongst others.

And there are significant differences in fertility services policy across the five integrated care boards in the East Midlands – which cover Derbyshire, Leicestershire and Rutland, Northamptonshire and Lincolnshire.

Mrs Newby said: “It’s a real mess. Why it’s all so separate in regions I don’t understand.

“You do feel upset, angry and all the emotions. It’s such a sensitive subject because you want it so badly.

“Just because of where you live, why should someone have a better chance?”

These policy gaps have prompted “listening exercises” across the region, like the one in Nottinghamshire, with the ambition to create one fair policy for the East Midlands.

Mrs Newby will start treatment in January and although she said she and her husband Dave were trying not to put “too much pressure” on themselves, they had had to start thinking about what happens if that cycle is unsuccessful.

“It’s something we’ve already had to start talking about. What do we do if this doesn’t work?” she said.

“Do you keep going? How far do you go to achieve having the child you’ve always dreamed of?

“We hear of people that have completely bankrupted themselves trying to have a family.”

Going down the private treatment route could cost the couple up to about £9,000 per cycle, according to Dr James Hopkisson, medical director of TFP Nurture Fertility Clinic across the border in Sandiacre, Derbyshire.

“Unfortunately there has been a postcode lottery in terms of IVF funding and fertility funding for some time,” he told the BBC.

The private clinic is contracted by the NHS with about 40% of its cycles being NHS-funded for patients mostly from Nottinghamshire, Derbyshire, Leicestershire and Lincolnshire.

Dr Hopkisson said the differences in access criteria across the region were causing unhappiness.

“Personally I think any decent civilised society should be looking at helping people to achieve their family,” he said.

“And in a time where we are seeing national and international birth rates falling, actually it becomes more important that we help people have the families that they so desire.”

But under the East Midlands-wide proposal to standardise the policy, people wanting to start a family could only be offered one cycle of IVF on the NHS.

Dr Dave Briggs, medical director at Nottingham and Nottinghamshire ICB, said NICE guidance to offer women under 40 three cycles of IVF should be taken “alongside” the priorities of the local area.

“That doesn’t mean to say that we don’t recognise the importance of IVF and fertility services but we also need to ensure that delivers within our financial means and also a lot of other services at the same time,” he said.

Dr Briggs added the “vast majority” of the region was only offered one cycle.

“This proposal is looking for a single policy across the entire East Midlands to ensure it doesn’t matter if you live in the city centre or out in Bassetlaw or in Newark – you get exactly the same access to this important service, regardless of where you live,” he said.

Residents can respond to the proposal by completing an online survey on the ICB website, joining online public meetings or sharing feedback on the phone.

The engagement period will run until 10 January 2025.