Infertility Treatment
The final item of business today is a members' business debate on motion S3M-3741, in the name of Helen Eadie, on inadequate infertility treatment.
Motion debated,
That the Parliament notes with concern that couples seeking fertility treatment in the NHS have to wait for 20 months in Glasgow, 13 months in Lanarkshire, 13 months in Ayrshire and Arran, 15 months in Dumfries and Galloway, three years in Lothian, six months for Lothian self-funding, up to 18 months in Grampian, up to 14 months in Highland, 12 months in Tayside, up to two years in Fife and up to two years in Forth Valley and that Orkney decides on a case-by-case basis; is pleased to learn that Shetland has no waiting restrictions; is extremely disturbed to note that Fife NHS board ranks among the worst providers of the service in Scotland in that each frozen embryo is counted as a cycle when other NHS boards require fresh and frozen embryo(s) to count as a cycle and that Fife NHS board only provides two cycles whereas other NHS boards provide three, thereby effectively giving Fife couples a third less of an opportunity for this treatment that some other couples in Scotland have; expresses particular concern that when a woman is in a relationship with a partner who has a child from a previous relationship she is denied access to any form of NHS provision in this area of specialism, and considers that NHS Lothian provides an example in increasing the age at which it accepts prospective fertility treatment candidates in consideration of the fact that many couples will not know that they need fertility treatment until their late 30s and are subsequently restricted by the unacceptable waiting times.
Why am I concerned about the inadequacy of assisted conception services in Scotland? In the 10 years during which I have been a member of the Scottish Parliament, a number of couples have raised with me their problems in trying to conceive a child. About one in six couples seeks specialist treatment for fertility problems, and infertility can have a profoundly distressing and devastating impact. However, excellent results can be achieved in providing assisted conception services if patients are rapidly investigated and referred for appropriate treatment.
What outcome am I hoping for from the debate? I hope that the Minister for Public Health and Sport will agree to more funding in order to eradicate the unacceptably long waiting lists for assisted conception services. I know that the Scottish Government has, in answers to my parliamentary questions, accepted that there is a postcode lottery as far as infertility services are concerned and it has agreed that that is simply not acceptable.
How can we fail to care about women who have been told, as one Edinburgh woman was, "Don't even try to join the waiting list. You're 36 years old now, and by the time you reach the top of the queue you'll be 39 and outwith the guidelines"? That young woman was typical of many, in that she studied hard at school, graduated, saved for a first home and then settled in. In the meantime, her biological clock was ticking and by the time she realised that there was a medical problem, it was too late. There was no possibility of treatment from Lothian NHS Board, because by that time she was 36. She and her partner raised the finance to go private, however, and the happy outcome was a child.
How can we fail to care about such couples and about the couples who cannot raise the finance to go private? The costs of private treatment range from £4,500 to more than £25,000, as in another case with which I am familiar. That couple now have two sons, but they also lost one baby in a miscarriage. A further outcome that I am looking for from the minister is for her to ensure that the recommendation of the expert advisory group on infertility services in Scotland that there be an age limit of 41 for infertility treatment is implemented across Scotland. That would partly alleviate what is in some ways a chaotic situation, with many health boards having different policies.
How can we tackle the problems and ensure equality of access for all? I know, from discussing the issues with a variety of professionals—including Professor Scott M Nelson, who is Muirhead chair of obstetrics and gynaecology at the University of Glasgow—that there exists the capacity to address infertility in national health service hospitals throughout Scotland. There is an informal network of relevant clinicians who are in contact with one another and can vouch for the infrastructure being able to cope. However, Professor Nelson advises me that the infertility units in various health boards are given fixed budgets each year and that they are instructed, when the money runs out, to stop treatments there and then and to restart them at the beginning of the next financial year. That could mean that treatments are stopped in the 10th month of the financial year, with units not operating for two months.
That situation has arisen because health boards have chosen to ignore the guidance that the Cabinet Secretary for Health and Wellbeing gave them. There has also been the EAGISS recommendations, the "Report of the Review of Infertility Services in Scotland" and the development at United Kingdom level of the National Institute for Health and Clinical Excellence guidelines. I understand that some health boards follow the EAGISS guidelines and some follow the NICE guidelines, while others do not follow any.
The previous Government sent out guidance in April 2007 in the shape of the "Report of the Review of Infertility Services in Scotland". A recap, with an update on the criteria, was issued by the health department in December 2008. Despite that, only seven health boards are attempting to meet the requirements of the guidance. In a response to a recent parliamentary question, I was advised that the minister is in discussions with another three health boards on application of the guidelines from her health department. The concern for members of the Scottish Parliament is that the other seven health boards can simply ignore the cabinet secretary and the health minister. In response to that point, the cabinet secretary said in a written answer:
"NHS boards are subject to on-going performance management by the Scottish Government Health Directorates and are required to formally account to ministers at their Annual Accountability Review."—[Official Report, Written Answers, 5 May 2009; S3W-22676.]
It seems to me that that job is not being tackled effectively, so I ask the minister this evening to give assurances to members that that item will be high on her agenda during each one of the reviews.
I will certainly undertake to do that. I agree that at issue is what we do on our watch, so I am more than happy to take responsibility for what we have done since 2007.
However, does Helen Eadie acknowledge that there is a question to be asked about what happened during the previous 10 years? Will she reflect on whether more progress could have been made during that time, which would have put us in a better place today?
The problem goes back a long way before that time. In reality, the Scottish Government is in the driving seat now and has given a commitment to the people of Scotland, so it is up to it to do more than pay lip service to the matter. I want action now.
I hope that members and supporters of Infertility Network UK will make it their business to turn up at the public reviews with the minister in towns this summer, having given advance notice to the minister of their questions. I shall certainly urge members of the network to do so.
There are other issues that I urge the cabinet secretary to tackle. Why have expert views in the 2007 review seemingly been dismissed? The clear preference of all respondents—including all the experts and voluntary organisations—was that it should be clear that the female should not have reached her 40th birthday at the time of treatment. Given that, why does NHS Lothian still have the nonsense of telling a young woman not to bother to go on the waiting list when she is 36 years old, because Lothian's age limit is 38 and she would have passed that deadline by the time she reached the top of the queue, as the waiting time is three years? If all that is not bad enough, some health boards send couples back to the end of the waiting list if the first treatment cycle is unsuccessful, which can be emotionally and psychologically devastating for them. The whole process is a rollercoaster of emotion for them.
Another issue is that in Fife NHS Board, not only is the waiting time two years, but treatment cycles are limited to three frozen embryos. That goes totally against the NICE and EAGISS guidelines. The EAGISS guidelines specify clearly a maximum of three embryo transfers, including two fresh cycles and one transfer of frozen embryos. If no frozen embryos are available, there should be one additional fresh cycle. I recognise that that is technical but, for the individuals who are concerned, it is crucial to treatment. One fresh cycle typically produces up to three embryos—one for fresh implantation and two for freezing. One treatment cycle has a minimum price tag of about £4,500. Each fresh treatment cycle requires another £4,500 and requires ovary stimulation, with the attendant risks for women from the drugs that are used. EAGISS recommended a limit of three fresh cycles. That was supported in the public consultation in 2007.
On social criteria, EAGISS recommended that neither partner should have been previously sterilised and that the couple should have no child living in the home. The NICE guidelines did not identify non-clinical criteria, but the Secretary of State for Health at Westminster said that priority should be given to childless couples. The response to the public consultation on the review group's report showed no clear preference for specific changes to criteria, but 70 per cent of respondents favoured some relaxation of non-clinical criteria.
I am grateful for having been given the opportunity by my colleagues to have this members' business debate and I am grateful for the support of colleagues in the chamber this evening. I respectfully urge the minister to respond meaningfully and not politically to the concerns that I have been asked to articulate on behalf of all those who are suffering throughout Scotland. On behalf of all the couples throughout Scotland who are waiting for treatment, I call for equal access for those with an established clinical need to a full range of services for the investigation and treatment of infertility on the NHS. I ask the Scottish Government to set targets to cut waiting lists in a phased way, in order to achieve a wait of not more than six months, and to put in place a special initiative urgently.
I thank Helen Eadie for giving me the opportunity to speak in the debate, as I would like to record my appreciation of the world-class work that the Simpson centre for reproductive health at the Edinburgh royal infirmary does to help and support childless couples.
Thousands of babies are born as a result of in vitro fertilisation treatment. The latest figures, from 2005, show that 10,000 babies were born throughout the UK as a result of IVF in that year, of whom 942 were born in Scotland. Of course, all children are special and all parents boast, but I have no doubt that the mothers of IVF babies have more bragging rights, because their miracle babies are a triumph not only of medical science, but of faith.
I have always believed that being a parent is a privilege and not a right, but everyone should have the same right to treatment. Equity of access is a founding principle of our national health service. I am therefore interested to hear from the minister what progress has been and will be made to ensure universal implementation of the recommendations of the expert advisory group on infertility services. As Mrs Eadie said, variations in the upper maternal age limit and in definitions of a treatment cycle are unacceptable. We know that, for clinical reasons, unexplained infertility will not be diagnosed until three years have elapsed. A woman living in the Lothians will then have an additional three-year wait for treatment. For a woman in her 30s, six years is far too long to wait.
If someone has unexplained infertility and is in their 20s, there is a 50:50 chance that treatment will be a success. If they are in their early to mid-30s, that reduces to one in three. If they are in their mid to late 30s, it reduces further, to one in four, and for those over 40, it reduces to one in 10. Speedy treatment is therefore imperative. I know of no couple who go into treatment blind to those statistics. To put oneself through treatment is to let the genie of hope out of the bottle when, for many people, there will be no baby at the end of the rainbow—only disappointment and despair. For that reason, I commend Infertility Network UK on the work that it does not only in assisting couples in accessing treatment but in supporting them to live with its consequences, good and bad. I hope that the minister can advise us what support is currently available to such organisations.
The funding and availability of fertility treatment—like all health services—invariably rightly becomes wrapped up in political issues of choice and priority, but it should not become a political football. As a back bencher, I want to do all that I can to push fertility treatment up the list of political priorities, but I have the luxury of not having to make the hard decisions for which the minister must account. However, for those who have had to work harder than most at conception and have eventually been blessed with the safe arrival of a real wee person who looks so unique but so familiar, we know how lucky we are. As Mrs Eadie stated, it costs approximately £4,000 per cycle of treatment, but our children are priceless. Fertility treatment may not be life saving, but it is certainly life giving, in more ways than one.
I, too, thank Helen Eadie for securing this debate.
I had a members' debate on infertility services and treatment on 27 January 2005. It has been interesting to look back at what motivated me to seek that debate and at my expectations for action following it. My motivation was based on the same issues that Helen Eadie and Angela Constance raised in their speeches. For example, couples now seeking fertility treatment can wait for 18 months in Grampian, 20 months in Glasgow and two years in Fife and Forth Valley. An even more disturbing fact is that people in Lothian who can afford to self-fund their treatment will get it in six months, whereas those who cannot must wait for three years. That hardly fits into the equality of access agenda—it is a clear example of a postcode lottery.
Another issue that was raised in the debate four and half years ago was the profoundly important role of male factors as a cause of infertility, with the average sperm count continuing to fall. Although many people assume that infertility is a female issue, male factors are responsible for 40 per cent of infertility cases; female factors are responsible for 60 per cent of cases.
Another serious issue is the continuing use by many health boards of a range of body mass index levels, either to ration treatment or for safety—who knows? Clarity is needed on the issue. Some health boards do not fund the treatment of anyone with a BMI of more than 30. Others set a BMI of 35 and channel patients to weight reduction before treatment is considered. However, being overweight and being very low weight enormously affect ovulation and mean that more people are presenting for treatment.
Infertility is now acknowledged as a medical problem. Previously, it was not given the same priority, because it was classified as a lifestyle choice. Women are still deferring childbirth, with clinics seeing a doubling of the number of women over 35 attending in the past 10 years while, over the same period, the proportion of women under 35 attending has halved. I imagine that that trend is likely to continue in the current economic situation.
The removal of the anonymity of sperm donors has drastically reduced the availability of sperm in Scotland, with many clinics purchasing from London at a cost to the NHS or the patient of £2,500 per course of treatment. I understand that all fertility clinics in Scotland are struggling to maintain a donor insemination service, with many waits of up to and over a year. Still, more than 5,000 couples present for infertility treatment each year.
The final point that I will mention, which arose in the previous debate and is as pertinent today, is the range of emotions that couples go through—fear, guilt, anger, shock, shame, isolation and inadequacy. That was highlighted previously by Infertility Network Scotland.
What has changed in four and a half years? The Westminster Government introduced an 18-week referral-to-treatment target in mid-2008, which has, understandably, had a dramatic effect on waiting times. In Scotland, we had a consultation and then a report on the review of infertility services, which was published in March 2007. On its back page, the review promised
"to consult with service providers and other stakeholders in developing the recommendations on waiting list management, which will be published in the summer of 2007."
We are now in the summer of 2009 and we are still waiting for those recommendations. As Helen Eadie said, there needs to be greater clarity on fertility issues such as the definition of IVF—whether fresh or frozen—a consistent age bar to treatment and an urgent look at donor insemination services, whether on a Scotland or UK-wide basis.
I welcome the debate and look forward to hearing the minister break the silence on infertility issues so that couples throughout Scotland who face such problems can be given some hope of parenting a child.
I congratulate Helen Eadie on obtaining this further debate on infertility. It is clearly an important issue. Indeed, the level of fertility appears to be declining, although the birth rate has gone up in the past five years. A number of factors are associated with that—as Mary Scanlon said, there is a general feeling that male fertility is declining—so it is important that we debate the issue.
I had the good fortune to serve under Dr John Ford on a commission in the 1990s that led to the publication of a report entitled "Infertility Services in Scotland". The report was written in 1992 and published in 1993, and I am sorry to say that the issues that are being debated today are broadly similar to those that were debated then. The only change is that the cause of infertility—when it can be established by a diagnosis—is something that couples are now entitled to know. There is a more rapid approach to that. However, in 1992, there was a huge postcode lottery even for access to a diagnosis. As Angela Constance said, as a first step, every patient and every couple should be entitled to a diagnosis when that is possible. Not knowing the situation that they are in is very difficult for them.
Much of the commission's work centred on some highly technical aspects of infertility. As the general practitioner and psychiatrist on the commission, I was particularly concerned about the psychological aspects of services. Among other things, the variation in waiting times throughout the country meant that many couples were being unduly stressed by the uncertainty of the situation. Indeed, the whole management of infertility was, at that time, characterised by massive uncertainty.
The commission, which was supported by the Scottish Health Advisory Service, made 27 recommendations, all but six of which were accepted by the then Conservative Government. Of those six, three were commended to health boards for their consideration and the remainder were passed on to a new clinical resource and audit group advisory committee.
The one recommendation that was not accepted was that reproductive services should receive centrally determined funding, and that remains the case. It is for health boards to decide what funding they allocate to infertility treatment. Inevitably, that leads to the postcode lottery that Helen Eadie and Mary Scanlon have ably described. When the commission produced its report, we had four Scottish centres for infertility services, and that is still the case. Consideration should be given to the direct funding of those centres on a regional basis. Looking back at the notes that I made at the time—my wife does not like the fact that I tend to hoard all my papers—it is interesting to discover that many of the centres were charitably supported because they did not have sufficient NHS funding even to provide a basic service.
As I have said, it is clear that without careful planning and the provision of effective support, couples can be left in a cycle of apparently never-ending investigations. When there is no closure, couples cannot deal with the sense of loss that they are bound to experience. The uncertainty means that depression is quite commonplace during that process. Our recommendation that an infertility network and a network of specialist nurses be established has been helpful.
I have concentrated on the history of the issue, but we are concerned about the future. It is true that NHS funding will always be limited, so it is difficult to provide adequate funding to cover all the new medical technologies that are available. Whatever we do, we must try to eliminate the postcode lottery. It is totally unfair that some couples have enormous waiting times simply because of where they live.
In January, I asked the Scottish Executive whether infertility treatment would be included in the 18-week waiting time initiative. The cabinet secretary's reply was that she was aware that some boards had invested in reproductive services in an effort to reduce waiting times and that the issue of waiting times was being considered. Four or five months on, I hope that the minister—the failings of any previous Administration notwithstanding—will be able to give us a clearer indication of whether the present unacceptable postcode lottery will be ended.
On behalf of the Scottish Government, I welcome the debate. I know that members of all parties have taken a strong interest in what is a complex and long-standing issue.
In 2007, we inherited some complex problems, which, unfortunately, were not addressed by the "Review of Infertility Services in Scotland" that was published in early 2007. The review did not address a range of issues, including the differences in waiting times in different board areas, the problems of gamete donation or the subject of data collection—I could continue.
However, we are making progress: boards are making progress, and a number are reviewing practice in their areas. I am pleased to inform members that NHS Grampian plans to implement the guidance fully by the end of this summer; this month, NHS Orkney has fully implemented the guidance; and NHS Shetland and NHS Western Isles fully implemented it at the beginning of the year. That means that nine boards have implemented, or are in the process of implementing, the guidance. I hope that members will welcome that progress.
Many areas have invested in order to provide a timely service for patients who need to access all levels of infertility services. In many areas, waiting times have improved since the expert advisory group on infertility services published its guidance back in 1999. For example, the average waiting time in the NHS Borders area is currently three months, whereas when the guidance was published it was five years. The wait had reduced to four years by 2001 and has been at three months for several years.
Over the same period, waiting times have reduced in many other board areas, including those of NHS Ayrshire and Arran, NHS Greater Glasgow and Clyde, NHS Grampian and NHS Lanarkshire. However, we accept that other boards still have considerable work to do. For example, average waiting times in NHS Fife have remained static, at around 24 months, since 1998. That prompts the question why we are beginning to get to grips with the issue only 10 years later.
We are giving the matter our attention, and I hope members will welcome that fact. We are considering options on various complex aspects of infertility services, including how best to ensure equity of access throughout Scotland. We are currently finalising a draft action plan that will cover data collection, waiting times, the definition of a cycle and single-embryo transfer, as well as other important issues that members have raised in this evening's debate. During the summer of this year, stakeholders—including clinicians, the Infertility Network UK in Scotland and the Royal College of Obstetricians and Gynaecologists—will be invited to form an expert advisory group on infertility services to consider the draft action plan. I will certainly ask for regular updates from the group as well as an interim report after six months, which I will be happy to share with Parliament.
Angela Constance made specific mention of the Infertility Network UK in Scotland and paid tribute to its work—I do likewise. We have had constructive discussions with the charity, which I am pleased to say has offered to work with NHS boards throughout Scotland so that they better understand the barriers that exist and to help them implement the infertility guidance in full. I hope that Helen Eadie will be reassured that we have been able to reach that position through constructive dialogue. The lobbying that she suggested will, I hope, not be needed because we will have made the progress that is required. I was delighted to accept the charity's offer of assistance, and over the next three years we will provide funding to it to work with boards to help them address the inequity of access that has existed in Scotland for too many years.
Particular emphasis will be placed, initially at least, on the boards that have very long waiting times and those that have not implemented the 2007 updated criteria in full. We very much hope that boards will see that development as a positive step that will assist and complement the work that is already on-going in individual board areas. We will be in touch with boards in the near future with further details.
I am pleased to be able to say that despite all the challenges that we have faced—and while I acknowledge the challenges ahead—Scotland is the only part of the UK that routinely follows NICE guidelines on the number of cycles of IVF treatment. A majority of our NHS boards allow three cycles of IVF treatment to those who are eligible. In Northern Ireland and Wales, only one cycle is routinely made available. In England, some primary care trusts did not refer patients for treatment at all until recently and the remainder offered only one cycle. As a result of the Infertility Network UK's work with primary care trusts in England, some trusts now offer more than one cycle, and in one area—in the east of England—trusts now offer three cycles of treatment and up to a maximum of six embryo transfers. When we talk about the situation in Scotland, it is important that we get an accurate picture.
We agree that action is required, but we must also recognise where progress has been made. I certainly agree that waiting times require attention and are too high in some areas, but we should recognise the improvements that have been made by the likes of NHS Borders and NHS Lanarkshire since the expert advisory group published the guidelines back in 1998.
As some members are aware, data from the four level-3 infertility clinics in Scotland are not collected by the Information Services Division as the data belong to the Human Fertilisation and Embryology Authority. As the information is not collected, a waiting time target could not be monitored at present. However, we believe that systems need to be established to allow confidential and sensitive patient information to be shared, and over the next few months we will engage with our key partners to discuss those issues to consider how they should be taken forward. We would like those who are eligible for NHS infertility treatment, wherever they are in Scotland, to receive timely NHS treatment.
We recognise that much remains to be done, but we believe that, on our watch, we have made a start in addressing issues that did not receive attention previously. We very much look forward to working in partnership with NHS boards and other stakeholders, particularly the Infertility Network UK in Scotland, to ensure that the Government at last takes seriously the subject of infertility. I do not doubt the difficulties faced by NHS boards with long waiting times, but we will work with them and support them to ensure that there is equity of access throughout Scotland.
I thank members for their speeches in the debate. I will respond to any points that have been raised during it that I have not been able to cover, but I hope that I have managed to give members some room for optimism for the future.
Meeting closed at 17:40.