NHS Fertility Services

Justin Madders Excerpts

Thursday 19th January 2017 Westminster Hall

[Justin Madders (Ellesmere Port and Neston) (Lab)]

It is a pleasure to serve under your chairmanship, Mrs Gillan. I congratulate my hon. Friend the Member for Birmingham, Selly Oak (Steve McCabe), the right hon. Member for Wantage (Mr Vaizey)—they both made excellent contributions—and the right hon. Member for Carshalton and Wallington (Tom Brake) on securing this extremely important debate. My hon. Friend has been a keen campaigner on this issue, and his expertise and passion were clear when he described the urgent need for change. This is a huge issue that affects many couples up and down the country.

My hon. Friend described the rationing that CCGs are undertaking as crude and based on pseudo-moralistic prejudice. He rightly said that, in other areas of the health service, we would not base decisions on allowing access to treatment on such prejudices. He highlighted well the human aspects of this issue with personal accounts that I do not think any of us could have failed to be moved by, and he rightly highlighted the additional burden on the NHS of having to deal with complications from births resulting from treatments received abroad, where regulatory regimes may be less strict. I do not know whether the Minister is able to examine the cost of that for the health service, but that may be one way to build a financial argument for not rationing treatment. The moral argument has already been put extremely well.

The right hon. Member for Wantage also spoke in a measured and knowledgeable manner. He summed up the issue when he said that signals are being sent that the fertility service is a second-class service. He rightly pointed out that the cost of treatment has come down and its effectiveness has increased. In those circumstances, one would expect availability to improve, but that is clearly not the case. He spoke about the personal experiences of his constituents, one of whom said that infertility is not a choice. That is the perfect riposte to those who argue that IVF treatment is a lifestyle decision.

My hon. Friend the Member for Coventry North East (Colleen Fletcher) spoke about her own friends’ experience. She conveyed clearly how their hope evaporated as time went on, and how after five years that hope was finally dashed on the cruel and inhumane ground that they had suffered a miscarriage in the last three years. We know from other debates how hard it is for a couple to lose a child in that way, so it is surely unconscionable that we allow that to be a factor in denying people access to fertility treatment.

Since being appointed to the Front Bench, I have been involved in several debates about issues that traditionally have not received the attention that they deserve, perhaps because they have been seen as too difficult to discuss or seemed taboo. As my hon. Friend the Member for Birmingham, Selly Oak said, this issue was not debated at all in the previous Parliament, so we clearly do not talk about it enough, despite the fact, as Members have said, that it is the second most common reason for women to visit their GPs. As we have heard, one in seven, or one in six couples are affected by infertility. Whichever of those figures we want to stick with, that means that millions of people face a serious and lasting impact on their lives. Sadly, that results in stress, anxiety, depression and relationship breakdown. In some cases, infertility is the result of another serious condition, the impact of which couples are already having to deal with. I therefore welcome the opportunity to give a voice to people who often struggle silently with this disease and increasingly face the additional frustration of an unfair and unjustifiable postcode lottery.

Before I talk about the rationing and decommissioning of infertility treatment, I, too, want to talk about the human impact to put into context what we are talking about. Like other Members who have spoken, I have been contacted about this issue by a constituent. Her name is Zoey Evans, and she was denied IVF treatment by NHS West Cheshire clinical commissioning group, despite the fact that her infertility was caused by gynaecological treatment, part of which was undertaken without her express consent. The reason the CCG gave for her ineligibility is one that we have heard given by other CCGs—that her partner had a child from a previous relationship. The exceptional circumstances of her case and the cause of her infertility do not appear to have been adequately considered. I know from talking to Zoey how devastating the decision to refuse her the opportunity to become a mother has been for her, and the fact that she finds herself in that position only because of previous treatment on the NHS has made it even more difficult to deal with. Every avenue has been explored. I do not mind saying that I know that Zoey would make a great mum, and it is hugely frustrating to know that, if she had lived in a different area, she might have been given that chance.

Zoey’s situation, like many of the other personal tales we have heard today, demonstrates the point that has been raised already that infertility, as defined by the World Health Organisation, is a disease with an identified treatment—a treatment that is recommended by the National Institute for Health and Care Excellence. We are in a situation where, in some parts of the country, the NHS is allowed to ignore an individual’s healthcare needs as well as the NICE guidelines and effectively add another barrier to treatment by introducing further arbitrary criteria.

In the run-up to this debate, I was contacted by another individual, Richard, who also contacted my hon. Friend the Member for Birmingham, Selly Oak. As we have heard, Richard lives in Dunstable, and as such, he and his partner were entitled to only one cycle of NHS-funded treatment, which sadly was unsuccessful. He emailed me and described what it is like to deal with infertility. My hon. Friend read one quote, but I picked out another, about the human impact, that I thought was equally powerful. Richard said:

“It is very hard to explain to someone who has not experienced infertility the mental health struggle that you go through. If I had to describe our feelings with one statement, I would liken them to the emotion and turmoil that one goes through when a relative dies, the difference being with infertility, the feelings experienced do not slowly ease over time—they intensify.”

He told me of his anger about the fact that, if he lived just one mile from his current address, he would fall into the Luton CCG area, where he would have been entitled to three cycles of treatment rather than the one he received, which might have helped him to become a parent. That illustrates the perverse and cruel nature of the postcode lottery for treatment, which I will now address.

As we know, the NICE clinical guidance on infertility issued in 2004 is extremely clear. It says that

“all eligible couples should have access to three full cycles of IVF where the woman is aged below 40.”

Further guidance was issued in 2013, which recommended that women aged between 40 and 42 should have access to one full cycle. NICE, which was founded in 1999 to end the postcode lottery in prescribing, made those recommendations after deeming such interventions to be a reasonable cost and a clinically effective use of NHS resources. Incredibly, as we have heard, the charity Fertility Fairness found that, of the 209 clinical commissioning groups in England, just four follow the NICE guidance in full, despite CCGs having a legal duty to have regard to NICE guidelines when commissioning treatments. Again, the words of the right hon. Member for Wantage about a second-class service ring true.

When the previous public health Minister, the hon. Member for Battersea (Jane Ellison), was challenged on that in a written question, the response we got was:

“NHS England expects that all those involved in commissioning infertility treatment services to be fully aware of the importance of having regard to the National Institute for Health and Care Excellence fertility guidelines.”

The reality is, as we have heard, that there are enough caveats in that statement to render it meaningless. In another response, she went further and said:

“Blanket restrictions on procedures that do not take account of the individual healthcare needs of patients are unacceptable.”

We all agree with that. However, she stopped short of saying what the Government planned to do about the fact that 98% of CCGs are failing to apply the NICE recommendations in full. We know that at least 45% of them do not offer a full cycle and that more than 80% do not meet the recommendations on the number of cycles. If those restrictions are unacceptable—I think there is general agreement on that—we need to know what Ministers will do to change the situation. What is the point of having NICE recommendations if CCGs, facing huge financial pressures, can disregard them without any penalty?

As my hon. Friend the Member for Birmingham, Selly Oak said, access to treatment is being reduced, and about 10% of CCGs, including my own, West Cheshire, are consulting on that. What can we ask from the Government to stop the further slide away from recommending treatments? Does the Minister accept that something needs to be done? The impression given is that the guidelines can be routinely ignored. Does she accept that the impression can be given of an abrogation of responsibility? Does she accept that that raises real issues about accountability and legitimacy? It is called local decision making, but I do not think people on the receiving end feel that decisions are being made locally in their interests at all.

If the Government do not take a more robust stance when NICE guidance is being ignored by CCGs, they are not only accepting but entrenching the notion of a postcode lottery. We therefore need to look again at whether to strengthen NICE’s role in cases where there is clearly stated treatment that is affordable and effective but we see CCGs failing to implement that advice. I hope that the Minister will reflect on what has been said by me and other Members about how we can move that issue forward.

As we know, infertility treatments are far from the only example of NICE-recommended treatments not being commissioned. Postcode lotteries exist for a whole range of medical interventions such as hernia repair, hip and knee replacements, cataracts and varicose vein surgeries. Further rationings of treatments are being proposed by CCGs across the country as they struggle to cope with finances that simply are not keeping up with demand.

I have mentioned my CCG several times already. I do not wish to be over-critical of it because it is in a difficult position: its core funding allocation for the year is £9 million less than the funding formula says it should be. That gap is projected to close slowly in the next five years, but there will still be millions of pounds of shortfall every year over that period. At a time of increased demand, inevitably, it is being forced into this position, as are many other CCGs. Clearly, financial pressures are driving those decisions not just in my CCG but across the country. That does not chime with the claims we have heard that the health service has been given everything it has asked for.

As my hon. Friend the Member for Birmingham, Selly Oak and the right hon. Member for Wantage said, the postcode lottery is exacerbated by the huge variance in the amounts that CCGs pay for a single cycle of IVF, from as low as just over £2,000 to possibly three times as much in other parts of the country. In response to a written question on 21 April 2016, the previous public health Minister said that

“the Department and NHS England are considering options for addressing variation in the prices that CCGs are currently paying for in vitro fertilisation treatment.”

A report by an expert group on commissioning NHS infertility provision identified that

“a lack of knowledge and expertise in commissioning fertility services was a barrier to compliance with NICE guidelines”.

How close are we to a national benchmark on price? What support can be put in place to assist CCGs when they are commissioning fertility services?

I bring my remarks to a close by reminding us of the founding principles of the national health service: good healthcare, available to all and free at the point of use. Those founding principles came some 30 years before the first IVF birth, but, whatever the advances in medical science, they should apply to any treatments where a medical case is made for their use, not just to people living in certain parts of the country.

--- Later in debate ---

[Justin Madders]

The Minister has correctly identified that some CCGs are not providing any treatment at all. Does she think that blanket policy should be dealt with?

[Nicola Blackwood]

I am about to go on to work that we are doing to assist CCGs with better commissioning, including giving them advice on pricing, which the shadow Minister mentioned. Perhaps he will allow me to do that; I think it will be enlightening for him.

Work is under way to assist CCGs in better commissioning fertility services for their local community. It is right that we do that. My right hon. Friend the Member for Wantage was correct—the cost of IVF is falling, but not all CCGs are benefiting from that. We know that the prices that fertility clinics charge CCGs for an IVF cycle vary, and that some CCGs are not contracting in the most effective way.

The Fertility Fairness survey reported that the price being charged by service providers for an IVF cycle varied across the country, from around £2,000 at the bottom end to more than £6,000 at the top, although it is not clear what all of those treatment cycles involve. The Department of Health, NHS England and professional and stakeholder groups are working together to develop benchmark pricing for fertility services to ensure that CCGs get the best value for their money. That is obviously the first step to be taken before NHS England’s longer term work towards developing a national tariff, which my right hon. Friend called for.

In addition to that initiative, the national fertility regulator—the Human Fertilisation and Embryology Authority—is developing commissioning guidance that aims to improve the quality of commissioning, for example by encouraging greater use of single embryo transfers where appropriate for a patient. That does not reduce the chance of a woman having a baby but significantly reduces the incidence of multiple births, with their attendant risks and complications for mothers and their babies. NHS England has agreed to disseminate and promote that guidance to all CCGs in England.

Those approaches are intended to raise the level of knowledge and expertise within CCGs to ensure that they are able to commission services appropriately in what is a specialist area, exactly as my hon. Friend the Member for South West Bedfordshire (Andrew Selous)—who is no longer in his seat—called for. It would also be helpful for CCGs to pool their resources and expertise and collaborate more with each other to get a better deal for their patients. That has happened in the north of England, where members of two commissioning collaboratives are able to offer three IVF cycles to qualifying couples.

As I hope has been clear, it is the Government’s view that infertility is a serious medical condition. Those suffering from infertility who meet the criteria in the NICE fertility guidelines for NHS-funded treatment should be able to seek that treatment. We do not agree that clinical infertility should not be part of a comprehensive national health service. Reflecting on the strength of feeling expressed today, I will be writing to NHS England to ask that it communicates clearly to CCGs the expectation that NICE fertility guidelines should be followed by all.

The Department of Health, NHS England and professional and stakeholder groups will redouble efforts to develop the benchmark pricing for fertility services, which, as I have said, is a precursor to NHS England introducing a national tariff. NICE will continue with its review of fertility guidelines this year. I hope that series of actions demonstrates just how seriously the Government take this situation, and leaves all those watching the debate confident of our commitment to finding practical solutions to this serious problem.