The fertility gap

Because like thousands of others they have found that the promise of free fertility treatment has been broken by lack of resources, punitive rules, chaos and confusion. By Severin Carrell and Steve Bloomfield

Nicola Dawson thought her quest for a child was over. She had been told by her doctor that she was an ideal candidate for free fertility treatment to help start the family she and her husband Nigel had longed for.

Their GP had carefully checked the government guidelines. She was in the right age group, and had a proven problem with naturally conceiving a child. And to underline their case, the Dawsons had just heard the then Health Secretary, John Reid, announce that every health trust in the country should give eligible women at least one free cycle of in-vitro fertilisation.

Like thousands of childless couples across England, the Dawsons, from Berkshire, were ecstatic.

But then came the twist. Mrs Dawson, 32, quickly discovered that what the Health Secretary commands, local health trusts do not necessarily have to obey. The country's 402 primary care trusts (PCTs) can even ignore rulings from the National Institute for Clinical Excellence (Nice), the agency set up to assess which drugs and treatments should be available nationwide.

Windsor, Ascot and Maidenhead health trust told Mrs Dawson she was ineligible. Like scores of primary care trusts across the country, it had devised its own rules on eligibility for free IVF, introducing strict age limits and a subtle form of means-testing.

"We couldn't believe it. We had been under the misapprehension for a year after Mr Reid made his big announcement that everyone meeting the criteria would be eligible," said Mrs Dawson.

Theoretically, she was the ideal age - between 23 and 39 - but her trust said she was too young and would have to wait another four years to qualify under its age criterion of 36 to 39. But even if she did wait until her late thirties, Mrs Dawson had inadvertently ruled herself out. She had made the mistake of paying £10,000 at a private clinic for two IVF cycles that had failed, which made her ineligible according to her trust's criteria.

"I felt very angry to start with, and very, very miserable afterwards," she said. "Once the realisation kicks in that even if you do try and fight it, you're going to lose, you feel very miserable indeed. It sounds so childish, but it just wasn't fair. It just wasn't."

The Dawsons are not alone. An investigation by The Independent on Sunday has revealed that at least a third of England's PCTs are still failing to give free IVF cycles - a year after Mr Reid's deadline. And the Health Secretary's request was given the authority of the Prime Minister, when Tony Blair confirmed in early 2004 that he too wanted to end the "postcode lottery" in IVF treatment.

However, many PCTs simply cannot afford to meet the costs of the Prime Minister's promises, estimated at £85m.

As a financial crisis begins to grip primary care trusts, low-priority treatments such as IVF are among the first to suffer. A snapshot of the availability of IVF treatment across the country by the IoS last week has found that a third of all PCTs have age restrictions that ignore the Nice guidelines.

In Tameside and Glossop, in north-west England, treatment is restricted to women under the age of 32. Yet in Portsmouth it is limited to women aged 36 to 39. And in Luton, the trust does not offer treatment to women over 35, but said it "fully intended" to extend the service to women aged up to 39.

In several areas, policy for health trusts has been set at a regional level. All 10 trusts in Hampshire and the Isle of Wight and all 15 in Thames Valley refuse to offer IVF to women under the age of 36. In most of Somerset, treatment is restricted to women aged between 35 and 39, yet in one local trust, South Somerset, the age range is 30 to 39.

Other trusts manage to meet the Nice criteria, although fail to offer three cycles. Welwyn Hatfield trust, while limiting treatment to one cycle, follows the Nice guidelines to the letter when it comes to eligibility.

Waiting times also vary enormously. While Western Sussex and Exeter trusts have waiting periods of just three months, couples in Bury and Dorset must wait three years. In Cannock Chase in the West Midlands it can take up to five years for treatment on the NHS.

This problem has been grudgingly acknowledged by the Department of Health. In January, the Health minister Caroline Flint conceded that only about 40 per cent of all PCTs have confirmed that they are now offering free IVF. She admitted that more than 60 per cent of the country's trusts had failed to respond to the survey by Nice asking about their fertility services - raising suspicions that they had ignored Mr Reid's request or were uncertain about when they could meet it.

It is thought that a number of additional trusts are offering free IVF, but frequently with much stricter eligibility rules attached to them, or are working to very strict cash limits.

Cambridge City and South Cambridgeshire PCT is a case in point. Last September, its financial problems forced it to suspend all its IVF services for six months. Last month, the trust's board decided to restart its programme, but with a fixed budget. Once the £200,000 it has allocated for IVF has been spent, patients will be turned away.

Fertility experts believe that the NHS undervalues the seriousness of a woman's inability to conceive naturally. Health trusts do not see it as an illness needing treatment, but almost as a lifestyle issue. They also look at the costs of the treatment, which on average requires three cycles at £3,000 each.

Clare Brown, chief executive of Infertility Network UK, said: "Infertility and the treatment of it is incredibly complicated, and a lot of people in the primary care trusts don't have a huge understanding of it. They don't see it as an illness. They really don't.

"They don't understand the efficacy of a lot of the treatments. They just see IVF as not offering a 100 per cent chance of success. We also suffer because patients historically see it as a very private illness. You don't go around telling everybody that you've got fertility problems. It's very easy to put fertility as a low priority, and not to fund it, simply because there's a not a huge stampede of patients publicly demanding these treatments."

This "postcode lottery", Ms Brown said, is absurd. "I can't see the point in the Government referring something to Nice for national guidelines, explicitly saying that this will end treatment by postcode. But when they come in, they are not worth the paper they are written on. They need to do something to make these guidelines mandatory."

The situation in England, she said, contrasted strongly with IVF services in Scotland and Wales. There, the centrally devised guidelines are very largely followed by local trusts.

Across much of England, funding of IVF treatments has begun decreasing. Dr Mark Hamilton, chairman of the British Fertility Society, which represents NHS fertility consultants and private clinics, said: "The constant message that comes across from our members is that funding is patchy and in some areas funding has decreased. In others, they're just not implementing Mr Reid's recommendations at all. Local resources don't permit these priorities - that's the standard providers' excuse. They say they're not getting extra resources to provide what they see as extra medical treatments."

Both the British Fertility Society and Infertility Network UK are in talks with DoH officials and the NHS on trying to harmonise the eligibility rules for IVF and ensure that local trusts realise the pressing medical case for infertility treatment.

In the meantime, more and more couples are choosing to remortgage their homes or spend their life savings to pay for private treatment at the UK's burgeoning fertility clinics. At present, only a quarter of IVF treatments are done by the NHS.

Going private is not cheap: a single treatment cycle can easily cost over £5,000, a 60 per cent mark-up on the cost to the NHS.

The Bridge Centre in London, one of the best-known fertility centres, lists nine pages of prices on its website. The initial 45-minute consultation alone costs £150. Each cycle of IVF costs £2,785, but this excludes the cost of drugs. Additional charges can include £340 for a nominated doctor, £220 for an anaesthetist and £475 for hospital charges.

The Dawsons, defeated by bureaucracy and unsuccessful with their IVF treatments, have now decided to stop their infertility treatment. While some couples continue scrimping and saving to meet the £5,000 costs of each IVF cycle, sometimes paying for up to 11 cycles, the Dawsons are now going to adopt their children. So, for one couple at least, there is a way out of the infertility labyrinth.

'We had gone through so much, it wasn't a hard decision'

Michelle and Terry Harvey paid more than £5,000 for IVF treatment after being told they would have to wait at least 18 months on the NHS.

"We had gone through so much that, at the time, it wasn't a hard decision. You pay for what you want to get in life. It is very difficult when it is so important to you to have children and you are not able to do it.

"The treatment cost us £5,200 in total. Everything you do you pay for - it's £150 for the scan, £145 for two days of drugs. Halfway through, the doctors were going to abandon the cycle because it wasn't producing eggs. We were going to book another appointment to have more IVF, but then I got a phone call from the hospital saying I was pregnant. I couldn't believe it. My husband was in Asda shopping when I found out. I rang him when he was at the checkout and he stood there and cried his eyes out.

"Joshua was born in November 2004. A month later I got a letter from the NHS saying I had an appointment. I had completely forgotten about it.

"It is frustrating. There are lots of people out there who don't have to pay to get pregnant - some people don't even have to try. Lots of people don't have the money to go private.

"Joshua is a joy. Every day has been fantastic. He gets lots of attention. Because he was a long time coming everyone has spoilt him rotten."

COMMENT: Lord Winston

"We need to reappraise how we pay for the health service. The time has now come to look very critically at how it's funded. There's a lot of money being poured into the system, but there's not a lot of evidence that it's greatly benefiting patient care.

"I think the whole infertility system would be far better regulated if it was brought into the NHS ... I would like to see the private sector brought down to size because I think that it is often quite exploitative. There are very good private clinics, but there's evidence of overcharging.

"Then we would find very large numbers of infertile patients who would be prepared to pay towards the cost of treatment on the NHS, and then we would bring that income into the health service.

"People seem to feel it's a disreputable treatment which ought to be regulated. But it's a medical treatment like any other, which Nice [the National Institute for Health and Clinical Excellence] has recognised is a normal treatment and ought to be in the NHS.

"Infertility is a symptom of an underlying disease. It's like a pain in the chest. You can't single it out as a mystical 'want' - that's a totally wrong perception ... If we lived in a different society, we would value the family more than we currently do.

"We know there isn't enough money in the system, because the method of funding the health service at the moment leaves things to be desired. The problem is that the primary care trusts find it very difficult to balance the books.

"The health trusts have a difficult decision. They probably don't have any other choice. There is effectively de facto rationing, and the rationing is in all sorts of ways - rationing is always because of finance. We live in an imperfect world, but there should be a greater desire to make things a bit more equitable."

Lord Winston, Professor of Fertility Studies, Imperial College School of Medicine, London University, was talking to Severin Carrell