NHS Fertility Services

Cheryl Gillan Excerpts

Thursday 19th January 2017 Westminster Hall

[Steve McCabe]

I certainly agree with the hon. Gentleman about a postcode lottery; there is a massive variation in service, so we must strive to achieve a cost-efficient system that is genuinely national in the way it is delivered. I agree with that absolutely.

This debate is about IVF and related services. At a time of so much concern about the NHS generally, the debate could easily drift towards becoming a series of questions about other aspects of the NHS, but I am clear that we asked for this debate to raise concerns associated with those who need treatment for infertility issues.

Infertility is a problem that does not get a lot of Government or parliamentary attention; in fact, it was not debated at all in the previous Parliament. Yet we know that it is an issue that affects one in six couples in the UK and is the second most common reason for a woman to visit her GP. The problems of infertility are recognised by the World Health Organisation as a condition for which medical treatment should be provided, but that is not how we approach the matter today in England.

I am immensely grateful to my constituent Louise Jackson for bringing this issue to my attention and for giving me permission to share some of her experience with people today. Louise and her partner have been together for more than 13 years and have been trying for a baby for nearly six years. After tests confirmed that they would need IVF treatment, they were refused it because Louise’s partner already had a child, as a result of a previous relationship in 1975. That child is actually older than Louise herself, who has said:

“Anyone who is experiencing fertility problems will understand the agonising pain and upset it brings on a daily basis. The fact that we have been refused treatment on the NHS just adds to the anguish. We cannot express enough how hard it is to not be able to have children naturally, never mind being faced with the fact we’ve been saving for years for the thousands needed for this treatment. I hope one day these laws will be changed for couples like us and others in the near future.”

My information is that four clinical commissioning groups in England—Mid Essex, North East Essex, Basildon and Brentwood, and South Norfolk—have already decommissioned their assisted conception services, essentially as a cost-saving measure. Also, more than one in 10 CCGs in England are currently consulting on reducing or entirely decommissioning NHS fertility treatment. That means that more than 60 Members of Parliament represent seats where the provision of IVF services is at risk.

The guidelines produced by the National Institute for Health and Care Excellence are fairly clear on the provision of IVF services. NICE recommends that all those women who are eligible for IVF should have access to three full cycles of IVF if the woman is aged under 40, and in 2013 it updated its guidance to recommend further that women aged between 40 and 42, and who meet some additional criteria, should have access to one full cycle.

Fertility Fairness is an umbrella body that has the support of several organisations, including the Royal College of Nursing, the Association of Clinical Embryologists, the British Fertility Society, the National Gamete Donation Trust and the Miscarriage Association. In 2016, it undertook an audit of every CCG in England and found that only 16% of CCGs offer three cycles of IVF, which is the NICE recommendation. That was down from 24% in 2013, while the number of CCGs offering just one cycle of NHS-funded IVF treatment has leapt to 60%. The Minister is on record as saying that she finds the decommissioning of such services “unacceptable”, so she will not be surprised if I ask her what she plans to do in response to these figures.

According to NICE, a full cycle of IVF treatment should include one round of ovarian stimulation and the transfer of all resultant fresh and frozen embryos, but only four out of 209 CCGs comply with the NICE definition of a “full cycle”. As a result, in many parts of England, these efforts to provide IVF on the cheap are—perversely—wasting resources, because this incomplete offer is rarely successful and compromises the cost-effectiveness of IVF as a treatment. It is a bit like giving less than the recommended dosage of any other drug or treatment.

As I have said, NICE offers guidance on age appropriateness for IVF. However, without being required to offer any kind of explanation, some CCGs have lowered the maximum age for IVF to 35; others have introduced non-medical criteria, such as refusing couples treatment if one of them has a child from a previous relationship, as happened in the case of my constituent, Louise Jackson; and apparently even more criteria are applied for same-sex couples, including a requirement to demonstrate that they have already paid privately for six cycles of treatment before they can be considered by the NHS. Those requirements do not look like medical criteria to me; they look like crude, discriminatory rationing, based on pseudo-moralistic prejudices.

In Birmingham, CCGs justify their approach by testing their proposals via public consultation, and in 2014 a consultation covering the criteria for eight CCGs across the west midlands was undertaken. Of the 351 people who responded, 40% were against providing IVF to a couple where one party has a child from a previous relationship; 40% disagreed with that view; and 20% did not know. Nevertheless, those proposals are now the criteria that must be met. I cannot imagine such a crude approach being adopted for determining treatment eligibility for any other medical condition, but that of course is part of the problem.

Too many people think, in defiance of the World Health Organisation, that it is a lifestyle issue and not a medical condition. That is not helped by the fact that the Department of Health merely asks that CCGs “have regard to” the NICE guidelines. This recognised medical condition can have a number of related impacts. If left untreated, it can result in stress, anxiety, depression and the breakdown of relationships. A recent survey of almost 1,000 people with infertility problems conducted by Middlesex University found that 90% of respondents reported feeling depressed and 42% reported feeling suicidal, which was up from 20% when a similar study was conducted in 1997. Some 70% reported a detrimental impact on their relationship, and 15% said that it had led to the break-up of their relationship.

The debate is not about statistics, though; it is about real people and the devastating impact that being denied treatment for infertility problems can have on their lives. On Monday afternoon, I took part in a digital debate with many members of the public, and they helped contribute to our debate today. Hundreds of people shared their experiences. I cannot name them all, but I would like to take this opportunity to thank them for their contributions. I want to briefly share just a few examples that illustrate the kind of problems that mean we need to see some significant change in the delivery of this service.

Kelly Da Silva from south Derbyshire said:

“This is such an important issue for me, the anxiety and depression caused as a direct result of infertility and involuntary childlessness has affected every aspect of my life and caused me to leave a successful 12-year teaching career. The emotional and social impacts are absolutely devastating.”

Becky Thomas is from Hertfordshire, and comes under the direction of a Cambridgeshire CCG. She said:

“My local CCG cut the amount of cycles they offer from three down to one and are considering getting rid altogether. I live in one area that actually offers three full cycles however I come under a completely different CCG. It shouldn’t be a postcode lottery. It’s not a lifestyle choice. It’s a medical condition.”

Erin Nina Desirae from Sheffield said:

“I am in a same-sex marriage. My wife and I have been together for six years and have always talked about having children. We assumed that the law in this country would support us and enable us to try for a family with help from the NHS. Unfortunately, we were surprised and hurt to find that same-sex couples are not offered fertility treatment on the NHS until we have first self-funded at least six cycles ourselves. Whilst a heterosexual couple can receive NHS treatment after two years of trying to conceive. This feels like discrimination. Why should we be treated differently?”

What of the costs? Evidence suggests that many of the decommissioning and service reduction decisions are driven largely by budget considerations. Reports show that the cost to CCGs of commissioning one cycle of IVF can range from £1,300 to £6,000. It varies dramatically across the country. For example, it is much cheaper in Newcastle than it is in Birmingham, without any obvious explanation. What kind of way is that to run a health service and provide a vital treatment? Is it not a classic example of the fragmentation of the NHS that many predicted would follow the Lansley reorganisation?

In England, more than 200 CCGs are responsible for setting their own criteria and commissioning their own IVF services. To make matters worse, research suggests that the high cost of IVF in the private sector is forcing people to travel to such countries as the Czech Republic, where IVF treatment is far cheaper. The problem is that IVF is not anywhere near as well regulated in those countries as it is in the UK. As a direct result of reducing services in the UK, the NHS is being saddled with the high cost of complicated multiple pregnancies and births and other postnatal issues. There is also the additional cost to mental health services, which I touched on earlier. [Interruption.] As you can see, Mrs Gillan, I have successfully transposed a page of my notes. I hope you will bear with me for one second.

[Mrs Cheryl Gillan (in the Chair)]

Mr McCabe, this sort of thing happens to people all the time. We will bear with you.

[Steve McCabe]

I cannot believe I have done it, but I am extremely grateful for your patience.

As I was saying, the costs of people having to go abroad fall on the NHS, and that leads to further complications that may impact on our mental health services.

In the course of my speech, I have concentrated on the impact on women, but the issue does not solely affect women. It affects couples, same-sex couples and men. I understand that CCGs that are cutting back on IVF generally are also cutting back on ICSI—I am told that it stands for intracytoplasmic sperm injection and is the most common treatment for men with infertility problems—and I worry that men’s experiences of infertility are not fully appreciated. They may also suffer hidden trauma and stress as a result of their problems. I am grateful to Richard Clothier from Dunstable who said:

“The emotional strain served to us when our infertility was confirmed was absolutely horrific and debilitating. However, this does not touch the sides when compared with the mental health deterioration we endured from the precise point at which we learned our entitlement has been slashed by two thirds. Luton, in the same county, has three cycles, the rest of us in Bedfordshire get just one cycle.”

What do I hope to get from this debate? I hope that the Minister, by the time she has had a chance to reflect on all the contributions and the terrible experiences of so many people, will have heard enough to be convinced that she should set up an investigation into the provision of IVF services in England. I hope she will be persuaded to offer much stronger guidance to clinical commissioning groups that in all normal circumstances they should be expected to comply with NICE guidelines and at the very least offer a clear and unambiguous explanation for their reasons when they choose not to follow NICE guidelines. I hope she will be persuaded to look again at the case for setting a national tariff for the provision of IVF. It is simply ludicrous that when NHS resources are so stretched, as the hon. Member for South West Bedfordshire (Andrew Selous) said earlier, the same treatment can vary in price between £1,300 and £6,000. Those who have suffered with this condition feel they have been ignored and mistreated for far too long. They are entitled to expect that we will now act to address the problem.

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[Colleen Fletcher (Coventry North East) (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) and the right hon. Members for Carshalton and Wallington (Tom Brake) and for Wantage (Mr Vaizey) on securing this extremely important and timely debate. As we have heard, difficulty conceiving is a problem that will affect around one in six couples in the UK. I want to highlight the experience of one couple whom I know personally, although many elements of their story will resonate with others who have been affected by fertility problems and experienced difficulties accessing IVF treatment on the NHS.

When that couple made the decision to start a family of their own, there was no doubt in their minds that they would have a child together. Even as the early months of trying yielded no success and as many of the people around them, their friends, family members and colleagues, started to fall pregnant, they remained hopeful and expected that it would simply be a matter of time until they themselves conceived. After more than a year without success, and as the doubts that were absent at the beginning started to emerge, the expected did not happen and a sense of heartache, frustration and anxiety began to replace the hope that had gone before. They visited their GP to ask for help and advice, and so ensued a lengthy process involving tests, hospital referrals, and invasive and non-invasive procedures alike, yet the root cause of the problem remained unexplained.

Just as the couple had all but given up hope of conceiving naturally, they fell pregnant, nearly three years after initially making the decision to start a family together. Here, amid the darkness of their difficult journey towards prospective parenthood, emerged a shining beacon of hope. Yet, as we know, beacons can be so easily and cruelly extinguished, and so it was that only 10 weeks later they endured a devastating and heartbreaking miscarriage. The almost one and a half years that followed the miscarriage were punctuated by a continued inability to conceive, further visits to their GP, more tests and, ultimately, referral back to the hospital. The couple were eventually told in November of last year, nearly five years after starting their journey, that their last, best hope of conceiving was through IVF treatment.

More devastating news was to follow, however, because the couple were told that, despite having a clear clinical need for treatment, they were ineligible to access IVF on the NHS in their area. The reason: their local CCG uses arbitrary access criteria that are not applied in other areas of the country in order to ration access to treatment for financial reasons. A miscarriage in the previous three years is one of the criteria used to deny funding—in essence penalising our couple for experiencing a tragic event over which they had absolutely no control.

The unfairness of the situation is further exacerbated by the knowledge that were the couple to live in a different part of the country—my own area of Coventry, for example—they would be eligible for at least one fully funded cycle of IVF on the NHS. In other areas, they would be eligible for three fully funded cycles. That inequitable postcode lottery adds insult to injury for a couple who, like many others, are already trying to cope with the distressing effects of infertility. The couple are now faced with a situation in which their only opportunity for treatment comes with an enormous financial outlay. Therefore, treatment is reduced to a simple financial decision: those who can afford it have the treatment they need, and those who cannot do not—hardly a just system.

That couple, like many other couples throughout the country who are experiencing fertility problems, deserve fair and equal access to treatment. They deserve an NHS that fulfils its guiding principle of delivering care and treatment free at the point of delivery and according to need. To achieve that, the Government must act to eliminate the regional variations in IVF treatment provision, including the use of arbitrary access criteria, and ultimately seek to ensure that all CCGs routinely commission fertility treatment in line with NICE guidelines. That would mean eligible couples having access to three full cycles of IVF, which would significantly increase the chance of successful conception. I hope that the Minister will make such a commitment.

[Mrs Cheryl Gillan (in the Chair)]

As no other Members are seeking to catch my eye, I will now move to the winding-up speeches. I call the Opposition spokesman, Mr Justin Madders.

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[Steve McCabe]

I thank the various Members who have taken part in this debate: the right hon. Member for Wantage (Mr Vaizey), my hon. Friends the Members for Coventry North East (Colleen Fletcher) and for Ellesmere Port and Neston (Justin Madders) and the hon. Member for South West Bedfordshire (Andrew Selous), who has now left. It is never easy on a Thursday afternoon, but I really felt we had to have some focus on this issue in this place today.

I am extremely grateful to the Minister for the tone she adopted in her response. One reason why I asked her to instigate an investigation into what is happening is that I understand, from a parliamentary question I submitted, that the Government do not, as a matter of routine, centrally collect information on the provision of infertility services. While I acknowledge her point about provision being locally determined, the extent of the disparity has been a revelation to me. It is difficult to believe we are talking about a national health service when we see that level of disparity. I gently say to her that there would still be some merit in a further investigation into the extent of the variation in England at present.

I am extremely pleased to hear that the Minister plans to write to NHS England. I interpret that as meaning she will put pressure on NHS England to put pressure on the CCGs that are not complying with the NICE guidelines. I will certainly take the opportunity to write to NICE about the experience of same-sex couples, as she suggested, although the key here is obviously that the NICE guidelines have to be followed. That is the central problem.

I was extremely pleased to hear that the Minister is taking steps on benchmark pricing, which may well lead to the construction of a national tariff. All I will say on that is: the sooner, the better. If she were able at some stage to offer us a realistic timescale for that, it would be some comfort to the very many people who have contacted all of us to explain the pain and anguish they have suffered as a result of this condition. I am grateful to Members for their contributions and to the Minister for a thoughtful response.

[Mrs Cheryl Gillan (in the Chair)]

This has been a very valuable and important debate.

Question put and agreed to.

Resolved,

That this House has considered decommissioning of in vitro fertilisation and other NHS fertility services.