Dianne Green knows the great emotional highs and desperate lows that come with fertility treatment. Living in Farsley, near Leeds, when she and her husband Martin found they were unable to have children naturally the one free IVF cycle they were entitled to on the NHS ended in an ectopic pregnancy.
A further three cycles, which the couple paid for privately, also failed to complete their family and Dianne admits that in 2011, at the end of what had been a gruelling two years, Martin wanted them both to walk away from any further treatment.
“I persuaded him we should get a second opinion,” says Dianne, who after researching various options contacted CARE Sheffield. “Maybe it was because we went to a private clinic which saw NHS patients, rather than an NHS clinic which saw private patients, but it immediately felt different. It still wasn’t an easy thing to go through. IVF takes its toll on everyone involved, but they did extra tests which revealed I had a problem with an over active immune system and after one cycle in Sheffield I became pregnant with our son William.
“Because I had miscarried on a previous occasion I didn’t have an immediate sense of elation. I knew just how much could go wrong and I don’t think it was until he was born safely and was in my arms that I really allowed myself to relax.”
The couple waited another four years before paying for a further cycle at CARE Sheffield which in autumn last year resulted in the birth of twins Sophie and Charlie.
“I had just been made redundant and the choice was, do we spend the money on us as a family of three or do we give IVF another shot? Again it was me who persuaded Martin to try again, but it was a big decision. We had the best possible care at Sheffield, but if I have learnt anything over the last few years it is just how inconsistent IVF treatment is.”
The postcode lottery which governs fertility treatment has long been discussed, but securing IVF treatment in some parts of the country may become even harder as Clinical Commissioning Groups, which have the final say in what treatment is available on the NHS, look to balance ever tightening budgets.
Guidelines produced by the National Institute of Clinical Excellence in 2004 recommended that eligible couples should be entitled to three free cycles of IVF on NHS. However, in Yorkshire just three of the 22 offer the full three cycles. Of the rest, 14 have already restricted treatment to just one.
And with a number of CCGs elsewhere in the country already consulting on ending fertility treatment on the NHS entirely there are fears that IVF may become the preserve of a financially comfortable minority.
“Infertility affects one in seven couples in the UK,” says Kate Young of Fertility Fairness. “The World Health Organisation has rightly classified it as a disease and as with any other medical condition it is deserving of treatment.
“The fact is that if it is left untreated, it can result in stress, anxiety, depression and the breakdown of relationships. Yet despite all this evidence, for a number of CCGs fertility treatment is seen as an easy saving and currently 10 per cent of them are consulting on reducing the amount of IVF provision. To ignore the plight of approximately 3.5m people in the UK who are unable to have children without medical help is not only cruel, it’s also unethical.”
Across the country the picture remains bleak. Just 16 per cent of CCGs provide three free cycles and the figures appear to be going in the wrong direction. Between 2016 and 2015 the number of areas offering just one free cycle roaw by five per cent.
When challenged, CCGs often cite the cost of IVF as the main barrier to offering treatment, with many claiming that the decision to offer one free cycle to women aged up to 40 offers best value for money. It’s a point disputed by Fertility Fairness which says the price tag put on an individual cycle also varies wildly.
“We all know that there is a postcode lottery for treatment, but it is further compounded by the fact that almost half of all CCGs do not use the correct NICE definition of an IVF cycle,” adds Young. “A full cycle is one in which one or two embryos are replaced, where possible, into the womb as fresh embryos with any remaining good-quality embryos frozen for use later. When these frozen embryos are used, this is still considered to be part of the same cycle.
“Sadly where this practice isn’t adopted it restricts the chance of successful treatment and compromises the cost effectiveness of the service the CCG offers.”
Over the last three years Fertility Fairness has conducted an annual audit of what CCGs pay for IVF and again there again there are massive discrepancies. Last year the price reported ranged from £1,379 to as much as £6,000 for a single cycle and as well as a standardisation of the eligibility criteria, the organisation is also calling for a national tariff for IVF treatment.
“We know that there are some CCGs which deny treatment to women over the age of 35 despite NICE’s recommendation that women up to 40 receive three cycles and women aged 40-42 receive at least one cycle,” adds Young. “It’s been done in Scotland, Wales and Northern Ireland, so there is no reason why it can’t be done in England.”
As a result of increasing concerns about the decommissioning of fertility services, MPs are set to discuss the issue in parliament this Thursday.
“Britain pioneered IVF treatment, but now we are falling behind the rest of Europe,” says Tasneem Hussain from Heckmondwike. He and his wife had been trying unsuccessfully for a child for three years before recently undergoing fertility tests. “The problem is with me and there is nothing I can do about it. It is just one of those things, so why shouldn’t we have the full treatment that NICE recommends?
“All medical treatments are expensive, but I don’t see how a panel of so called experts can come to the conclusion that couples like us should only be given one cycle. Of course there shouldn’t be unlimited treatment, but that’s not what we asking for. We are just asking to be treated fairly.”
For those like Adel Shaker who are on the frontline of fertility treatment an overhaul of the current system couldn’t come soon enough.
“The House of Commons debate is an opportunity to call for clarity and consistency in the provision of NHS funded IVF,” says the medical Director, CARE Fertility, Sheffield. “Whilst fully appreciative of the budgetary challenges facing the NHS, we would welcome a national strategy for fertility funding rather than the current local provision which is defined by postcode. The present uncertainty and inequity of NHS funded IVF is clearly deeply disappointing.”
Anyone interested in the House of Commons debate is invited to share their thoughts on a dedicated page at facebook.com/events/704170653091145/
CARE Sheffield has a free fertility information event at the Mercure Hotel, Sheffield Parkway, on January 22 at 10am. Everyone is welcome, but you need to reserve a place at carefertility.com.