Trapped by the IVF tick list

Sarah Johnson
Sarah Johnson
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Sarah Johnson looks on longingly when she sees mums out for a stroll with their babies.

For years it’s been her dream to have a precious child of her own.

But the 34-year-old has a host of health problems which means her fertility is low.

She’s known for a long time that her chances of conceiving naturally are poor but that doesn’t make it easier to bear.

Starting a family has always been part of the plan for Sarah and husband Levi and they’ve been trying for a baby throughout their six year marriage.

Yet as each month has passed, any last hope they’ve had has been slipping away and Sarah now fears she’ll never be able to hold a baby of her own in her arms.

For thousands of desperate couples, the only route left open when fertility problems get in the way is IVF.

The Johnsons thought IVF was their only hope of having a child too.

But those hopes now lie in tatters because Sarah doesn’t meet the tough criteria set out on an NHS Portsmouth tick list.

‘I’m devastated,’ says Sarah. ‘I know I can’t have children naturally and IVF was my only option.

‘We had been going for tests and we thought we were going to be put forward for IVF but then the consultant just turned round and said “I’m sorry there’s nothing more I can do for you”. He said we didn’t meet the criteria.’

She adds: ‘They have a tick list you have to meet and if you fall down on any one that’s that. I think it’s completely unfair.

‘There are reasons I don’t meet the criteria. They should base it on the individual person, not a tick list.’

Sarah was told she had polycystic ovaries around 13 years ago and that means cysts on her ovaries stop her from ovulating frequently. That makes conceiving naturally harder and she also has endometriosis, which is a problem affecting the womb lining.

For a lot of the time she’s in pain and both conditions also make it hard for her to lose weight. To add to her problems, being overweight also makes it more difficult to conceive.

Yet it’s Sarah’s body mass index – or BMI – that means she’s failed one of the tick list checks and ruled her out of having IVF.

‘Having polycystic ovaries makes it more difficult to lose weight,’ explains Sarah. ‘I’ve tried every diet possible and just get to a certain point and can’t lose any more.

‘Also, because of the pain I’m in, there’s only so much exercise I can do. I can go for walks but I can’t go to the gym because it would be too much. Sometimes I can be laid up in bed for a couple of weeks.

‘My BMI is about 33 and the criteria says you have to be under 30.’

She adds: ‘The frustrating thing is that my gynaecologist said if I was to get pregnant it could probably help the conditions.’

The tick list check that Sarah from North End, Portsmouth, is most upset about though is the one that excludes a couple when one of the pair already has a child.

‘What really annoys me is that we’ve been excluded because my husband has a child from a previous relationship,’ she explains.

‘I’m the one with fertility problems, it’s not something I asked for. The fact my husband has a child has nothing to do with this. That was from a previous relationship. I can’t help that and nor can he.

‘Why should that affect us having a child together? Why should it mean I cannot have IVF? The criteria is ridiculous.’

Sarah and 36-year-old Levi went for lots of tests at Queen Alexandra Hospital, Cosham, before being told they couldn’t have funding for IVF on the NHS. Instead they were told to consider paying for IVF privately – but they say this isn’t an option.

‘Private IVF costs about £5,000,’ says Sarah. ‘But we just don’t have that kind of money.

‘I can’t work because of my conditions and the pain I’m in which means Levi is the only one bringing in the money.

‘His wages cover the cost of living, we don’t have enough left to save up £5,000.’

Frustrated, Sarah has now started a petition to try and get the local rules on IVF changed. She wants individual cases to be assessed on an individual basis. Only then, she argues, will the postcode lottery surrounding IVF be solved.

In the past, NHS Portsmouth has been accused of penalising couples who could get the IVF treatment if they lived in a different part of the country.

The NHS in the city has in fact only funded four rounds of IVF treatment in the last four years. Fourteen cases put forward for funding have been refused. Many more couples will have simply not been put forward because they fail to meet the criteria.

NHS Portsmouth’s criteria is the same as Hampshire, Southampton and all other areas in the South Central region.

The guidelines are set according to those laid out by the National Institute for Health and Clinical Excellence (NICE) – but, crucially, these guidelines don’t have to be adopted.

In fact, the NHS trusts in this region don’t follow some key pieces of NICE criteria, such as offering couples up to three cycles of the treatment if the woman is aged between 23 and 39 years.

Instead, the NHS in this area offers it to women aged between 30 and 35, and for only one treatment cycle.

The region’s NHS has defended this. Sarah Eastman, spokeswoman for NHS South Central, says: ‘The NHS South Central criteria are broadly in line with the NICE clinical guidelines.

‘However, in order to fund the number of cycles per couple recommended by NICE, or to offer treatment to the full age range recommended by NICE, the PCTs would need to make large cuts in other services, such as cancer services and heart services. It is estimated that the cost of full implementation of the NICE clinical guideline would be more than £16m across NHS South Central.’

Speaking about the criteria which eliminates couples if one person already has a child, she adds: ‘This criterion is in wide use in different parts of the country. It is deemed fair that priority is given to couples with no existing children.’

For Sarah, that’s no consolation. ‘I know I’m running out of time,’ she says. ‘I’m aware I’m getting older and I know fertility drops when you hit 30 anyway. I really want a baby. I want the experience of going out and pushing a pram but I’m worried I never will. I don’t know what to do really. I’m in limbo.’

IVF - who is eligible and who isn’t in Portsmouth

• Women must be aged between 30 and 35.

• The couple must have had unexplained infertility for more than three years, or have a diagnosed and permanent infertility problem for more than a year.

• The woman must have a BMI range between 19 and 29.9 for at least six months prior to treatment.

• If one of the couple has a living child (including adopted) the couple are excluded.

• Both partners must have been smoke-free for at least six months prior to treatment.

• Couple’s who have had private IVF are only eligible for NHS treatment as long as they have not had two self-funded cycles.

The rules in Portsmouth are the same for the rest of Hampshire, Southampton, the Isle of Wight, Berkshire, Buckinghamshire, Milton Keynes and Oxfordshire.

All these areas will fund only one cycle of IVF on the NHS.

The guidelines for IVF set by the National Institute for Health and Clinical Excellence (NICE) recommend offering three cycles of treatment to couples, and offering it to women who are aged between 23 and 39 years.

While NHS trusts in the South Central region do not do this, NHS West Sussex, which covers Chichester, has worked to a wider criteria.

NHS West Sussex’s IVF treatment is currently under review. It was suspended at the end of last year to save money and help balance the books.

But the criteria had been that women aged between 23 and 39 could get two cycles of IVF on the NHS.

PETITION

After realising she wasn’t alone in feeling that the IVF rules in this area were unfair, Sarah Johnson started a campaign to get those rules changed.

She wants rid of postcode lotteries when it comes to IVF. She also feels all couples should be assessed on an individual basis – not against a tick list drawn up by health officials.

In a bid to change the rules she’s started a petition and an online group.

To get in contact with Sarah and discuss your IVF problems with other women in the same position go to gopetition.co.uk and search ‘change the rules on IVF and stop the postcode lottery’.

More than 90 people have joined the group and signed the petition.