Funding for IVF in the UK – over four years of waiting

I thank BioNews for giving me another opportunity to highlight the fact that not just one or two, not just a hundred or so, not just several hundred, but probably thousands of couples who need assisted conception treatment such as IVF or ICSI in order to have a child are not able to access that treatment on the NHS. STILL!

Infertility Network UK (INUK) has led the National Infertility Awareness Campaign (NIAC) for over 14 years and we are determined to end this unfair, unacceptable and unjustifiable situation in respect of the NHS funding for infertility treatment. The National Institute for Health and Clinical Excellence (NICE) published the Fertility guideline in February 2004 which, amongst many other recommendations, proposed that up to three full cycles of stimulated IVF or ICSI for couples fitting clinically agreed criteria should be made available on the NHS.

Q. Did that happen? A. No – well not everywhere! The NICE Guideline officially applies only to England and Wales. In England, PCTs are left to make their own decisions on how they spend their budget, leading to this shambolic funding for fertility treatment.

The Welsh Assembly instructed that 'one cycle of treatment' should be available from April 2005. They have made no movement towards implementing further NHS-funded cycles since that time.

Scotland was way ahead of the rest of the country in their funding arrangements. Patients fitting eligibility criteria have been able to access three cycles of IVF since 2000.

Northern Ireland currently funds just one cycle of IVF, however – unlike the rest of the UK – they recently announced that they will allow couples with children to access NHS funding for their treatment.

NIAC and INUK have continued their campaign relentlessly. We find it totally unacceptable that more progress has not been achieved in implementing the NICE guideline. But we are not the only ones. Last month, at the Royal College of Nursing (RCN) Congress, the RCN Lothian Branch were able to put forward the following resolution for the Congress to debate and vote upon: under the heading 'Left Holding No Baby' the resolution was 'That this meeting of the RCN Congress calls on Council to lobby for implementation of the 2004 NICE Guidelines on the availability of IVF'.

Before I sat down and wrote this Commentary for Bionews I re-watched the debate via the webcast facility on the RCN site (Congress 2008 Webcast) and I am in awe and congratulate those nurses who spoke to the resolution. It made compelling viewing and should be watched by anyone and everyone who needs persuading. There were some common themes in the statements made by those speaking to the resolution:

• Fairness
• Mental health issues arising from not offering treatment
• How you would feel if you couldn't achieve your dreams in life
• Not to know how it would feel to hold a child
• Infertility is a medical condition
• Implementation of the NICE guidance is essential, not just the three funded IVF cycles, but also prompt investigation and treatment of infertility

But perhaps the most compelling and persuasive speakers were those who talked from a very personal perspective. One was a nurse who had been through treatment several years ago and had had to pay. She said how she described her babies as 'The Credit Babies – Visa!'. The second speaker that really moved me was from a gentleman who held up a photograph of his granddaughter. He explained that she lived where patients can only have two funded IVF attempts, and could possibly have been denied the brother or sister that she will have (at the time) in two weeks if she and her parents had lived elsewhere. He went on to say that 'this grandpa is very lucky! I'd like other grandpas to be as lucky as I am!' – and kissed his granddaughter's photo. I would challenge any PCT to sit down with that gentleman and not be persuaded to fund fertility treatment.

And perhaps this is the moment to remind ourselves it is not just about couples having a family – it's also about grandparents, aunties and uncles, brothers and sisters. The impact of infertility resonates more widely than is often recognised.

I am delighted to say that the resolution was passed with a massive majority – 318 votes for the resolution with 37 against. I look forward to hopefully working with the RCN Council and taking this forward. Certainly the National Infertility Awareness Campaign welcomes their support.

INUK continues to work on the project we were invited to take forward by the Department of Health to try and standardise access to treatment. Our latest survey of PCTs in England continued to show huge variation in the levels of funding for fertility treatment and equally huge variation in the eligibility criteria being applied. Some of the criteria being applied can only be ways of rationing treatment. We are angry that this survey showed that many PCTs were not including frozen embryo transfers as part of their IVF cycles. This is vitally important given the move towards single embryo transfer (SET). In fact we can't believe that some areas are happy to fund a treatment which brings about something as special as an embryo, but only allows them to be transferred if the patient has the ability to pay. We challenge that decision wholeheartedly.

So what next? NIAC and INUK will continue to campaign to end what continues to be 'treatment by postcode' or 'treatment by bank balance' or 'treatment depending on what eligibility criteria your PCT has decided upon'. No more 'Credit Babies' – it simply cannot go on!

INUK are busy organising our fourth National Infertility Day, taking place on Saturday 19 July 2008 – a one day conference for patients and health professionals aimed at providing the best possible information for those affected by infertility but also aimed at raising awareness of just what suffering from infertility is like and how it is – or isn't – treated by the NHS. Go to the National Infertility Day website to find out more. A day not to be missed – this year in recognition of 30 years of IVF. Let's not hope it's another 30 years before we have proper NHS funding for IVF.