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IVF Fertility Waiting Lists

Private Members’ Business – in the Northern Ireland Assembly at 3:00 am on 25th October 2007.

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Photo of William Hay William Hay Speaker 3:00 am, 25th October 2007

The Business Committee has agreed to allow up to one and a half hours for the next debate. The proposer of the motion has 10 minutes to propose and 10 minutes for the winding-up speech. All other Members are allowed five minutes to speak. One amendment has been received and published on the Marshalled List. The proposer of the amendment will have 10 minutes to propose and five minutes for the winding-up speech.

Photo of Alex Attwood Alex Attwood Social Democratic and Labour Party

I beg to move

That this Assembly calls for a review of the policy on IVF fertility waiting lists, including urgent consideration of the introduction of age-weighting criteria.

I thank those who agreed to the motion’s being debated in the House. I give particular thanks to the British Medical Association (BMA), the researchers in this Building and the Infertility Network UK for their briefings.

I must walk gently when talking about IVF, because I walk on the hopes and disappointments of many families in this part of the world. At the start of the debate, it is important to record that, prior to 2001, there was no publicly funded fertility treatment in Britain or Northern Ireland. Therefore, the situation is much better now than in the latter years of the twentieth century. In the past year, changes to the criteria governing treatment mean that women up to the age of 40 can now receive treatment.

When the policy was changed a year ago, the Department stated that it would request that:

“Boards monitor referrals and waiting times for treatments over the next 12 months. This will facilitate assessment of the demand for services and the capacity of the RFC to meet that demand.”

I met the Minister in September to urge that his Department conduct that review. Earlier this month, he replied that he would ask the boards to review the impact of the new criteria for access to publicly funded fertility services and specifically report on referrals, patient activity and waiting times. Although I welcome that commitment, I urge the Minister to instruct his Department to conduct a fully fledged review into all matters arising from access to fertility services in the North, rather than leaving it to the boards. Whether the review is conducted by the Department or the boards, several matters must be addressed, and I ask the Minister to comment on them during the course of the debate.

The National Institute for Health and Clinical Excellence (NICE) recommends that couples receive three cycles of IVF treatment. However, in September 2007, the Department of Health, Social Services and Public Safety in Northern Ireland issued guidance that offered only one cycle. Therefore, I ask the Minister to confirm whether he and his Department will work to achieve the NICE recommendation of three cycles. In July 2007, the Department of Health in England sent a note to primary care trusts advising that they work to a three-cycle treatment programme. Has the Minister’s Department issued any similar advice here? The clinical evidence is that one cycle of treatment is often a trial run and that the second and subsequent treatment cycles are those that may deliver success.

I ask the Minister to explain what is meant by a cycle of treatment. When a woman’s eggs are being harvested, additional valid eggs are often stored for potential use.

There is a view that, in addition to a first implantation of an egg or eggs, a cycle of treatment should enable subsequent implantation of a further egg or eggs, given that they are in a valid state, where there is as a conse­quence limited cost to the Department’s budget as the subsequent treatments have reduced drug requirements. I ask the Minister to confirm whether the review, however it is constructed, will address that matter.

I also ask the Minister to confirm whether the review will deal with the issue of waiting lists generally. As of May, there were 27 patients in Northern Ireland who had been waiting for more than 24 months; 48 patients who had been waiting for between 18 and 24 months; and 63 patients who had been waiting for between 12 and 18 months. There is some guidance in England that there should be an 18-week waiting time for all medical interventions. Can the Minister confirm whether the review will address the length of waiting lists? Will it address the issue of an 18-week limit on waiting lists and, if not, will resources and capacity be built up to enable women who have been waiting for many more than 18 weeks for treatment to have it in much less than 18 or 24 months?

In September 2006, the Department confirmed that an additional £50,000 per annum would be allocated towards the enhancement of existing counselling services, with the requirement that access to the services be equitable across Northern Ireland. Some people who have knowledge of these matters advise me that that money may not have been spent. In any case, the intention behind building up money for counselling services to provide better services across Northern Ireland, and in particular in the north-west, has not been fulfilled, and is not fulfilled by having a counselling outreach facility in Cookstown.

My interest in this issue was prompted by a couple who came to me anxious that the woman in the relation­ship was approaching the age of 40 and would, therefore, be “discharged”, as hospital people say, from the medical regional waiting list. It so happens that, in the past two weeks, she has passed 40 and been discharged, when she was around tenth on a waiting list of 500. I have the authority to refer to those people’s circumstances in this debate. I have to say to the Minister, to the Department and to the House that that situation should not have arisen.

It seems to me that, during the stewardship of the current Minister and that of the previous, direct rule Minister, Paul Goggins, this issue was not properly addressed. Why do I say that? If the criteria were changed in September 2006 to enable women to get treatment up to the age of 40, when the previous limit was 38, it should have been anticipated that there would be a spike of people going on the waiting list who may have been over the age of 38, in advance of their turning 40. In those circumstances, it seems to me that the Department should have legislated to legally and properly accommodate those couples and those women. However, in correspondence to me, the Department maintains that:

 “a process that awarded priority to any particular group of women would have a negative impact on others awaiting treatment and would seriously compromise the ability to ensure that the population have equitable access to specialised fertility services.”

I agree with that. Of course, if you treat older women approaching the age of 40 before they fall off the list and ahead of any other age category, it has a negative impact on younger women, because they have to wait longer. However, the test is not about what the negative impact on younger women is; the test should be whether that impact is disproportionate compared with the impact on the older women who get treatment.

I have said to the Minister that earlier treatment of a woman because of her age, and who is, therefore, disadvantaged, does not have a disproportionate impact upon the treatment of a younger woman. If the older woman does not receive treatment, she will never receive it. Over recent months, I have put that issue to the Department of Health, Social Services and Public Safety, but there has been no concurrence.

I urged the Department to run a computer programme whereby all details and profiles of the women on the waiting list could be compared to determine whether there was indeed a disproportionate impact upon younger women. As far as I know, that simple exercise has not been conducted.

Moreover, I outlined a series of measures by which, legally and properly, women who approach the age of 40 could have treatment without significant disadvantage to women of any other age group. None of those proposals was accepted by the Department.

I urge Members to support the motion and encourage the Minister to introduce legal and proper mechanisms to ensure that the example of a couple who, two weeks ago, lost out on IVF treatment, is not duplicated in other parts of the North.

Photo of Michelle O'Neill Michelle O'Neill Sinn Féin

I beg to move the following amendment: Leave out all after “calls” and insert

“on the Minister of Health, Social Services and Public Safety to commence a comprehensive review into the current criteria used to assess eligibility, including the age weighting criteria, the ongoing problem with waiting lists, and the number of IVF treatments available on the NHS, with a view to establishing a more equitable and accessible policy.”

Go raibh maith agat, a Cheann Comhairle. I thank the Member for bringing this very important topic to the House. The amendment has been put forward with a view to establishing a more equitable and accessible policy. It enhances the motion, and calls for a comprehensive review of the criteria currently used to assess eligibility, including age-weighting, the ongoing problems with waiting lists, and the number of IVF treatments available on the NHS. I recognise, however, that there have been recent improvements in criteria and availability.

I immediately took an interest in the motion, because friends and members of my family have been in that situation. They have made numerous hospital visits and undergone test after test. They have described the experience as an emotional rollercoaster — a journey that was, from start to finish, painful.

It took six years for one couple that I know to find the courage to visit their GP. Surely that is not acceptable. We must ensure that that is not allowed to continue. The overall impact of a couple’s inability to conceive cannot be underestimated. We must be concerned about the effect on the couple’s mental health and the knock-on effect on their family circle. As elected representatives, we have a duty to ensure that an adequate support service is in place to meet their needs.

In 2001, my party colleague Bairbre de Brún announced her intention to consult on the future of fertility services and, thankfully, she introduced interim criteria to carry us through until the outcome of the consultation process. For the first time in the North, IVF became available as a publicly funded service.

Although those measures were not ideal, they were an improvement on the previous situation and were carried forward on the recommendation of the Regional Medical Services Consortium. They continued until 2006, when the British direct rule Minister Paul Goggins introduced revised criteria as the outcome of the process that had begun five years earlier.

The changes impacted on several areas; for example, the upper age limit for women who use their own eggs was changed from 37 years old to 39. That was a welcome improvement. Couples with dependent children who live with them are now able to access publicly funded services. That, too, must be a welcome develop­ment, because the previous criteria led to an inequitable situation that discriminated against a partner in a new relationship who had no children from a previous relationship.

Another welcome development is that couples who have been diagnosed as infertile will no longer be subject to a qualifying period before being eligible for publicly funded treatment. However, those with unexplained infertility still have to complete the three-year waiting period, and that must be disappointing for them.

As Alex mentioned, one of the main downsides of the revised measures is that couples will be offered only one cycle of publicly funded IVF treatment.

The flexibility to provide more than one cycle of treatment will depend on the demand for the service and on the funding available. We should all share that concern, as it may mean a return to the postcode lottery for those who need to access the service. If there is a high demand in a trust area, couples may suffer. We should not stand by and allow that to happen: we must nip it in the bud now. The issue must be addressed through a review.

The Infertility Alliance has broadly welcomed the new changes. However, it is deeply disappointed that the NHS will now only guarantee one cycle in contrast to the two-cycle minimum under the interim arrangements. We call on those boards that provide two cycles to resist the temptation to cut their service levels. Two or three cycles of IVF are normally regarded as the optimal treatment approach, and the National Institute for Health and Clinical Excellence advises providing three cycles of treatment. A senior lecturer in reproductive medicine at the University of Bristol has said that three attempts would be acceptable, as that would offer couples a 50% chance of conceiving. Surely, we must take those comments on board, and the Department must take them into account in taking forward a review.

The other area that must be addressed is support and counselling for couples who are going through the IVF process. There are many pressures on couples as they go through the process. We must ensure that sufficient resources are in place to support groups such as the Stork infertility support group, the Tiny Feet infertility support group, and the Craigavon patient support group. I am sure that those groups offer wonderful support, but we must ensure that we further develop that and identify whether new groups are required.

In conclusion, I ask the House to support the motion and amendment. In doing so, we will send a clear message to the Minister that we want a consistent, equitable and accessible service for those who need it. I have outlined some of the concerns. There is a common thread in what I have said and in what the proposer of the motion has said.

Photo of Michelle O'Neill Michelle O'Neill Sinn Féin

I am nearly finished anyway. I hope that the Minister takes on board what has been said in the debate. We have an opportunity in this new Assembly to carry out a comprehensive review that reflects the needs of those who are going through this difficult process.

Photo of Iris Robinson Iris Robinson DUP

I support the amendment because it includes more detail. The matter before us is, undoubtedly, very emotive. Some complex issues must be considered. There are difficult questions about how and where precious resources ought to be directed. Fertility services occupy a particular category in the health care sector, as they do not deal with life threatening illnesses and the patients are not in pain — physically anyway. Some would question the degree to which such treatments should be freely available through public money. Undoubtedly, however, fertility services are incredibly important, and denial of such treatments can prove traumatic to the couples affected. Furthermore, we must consider how we should manage access to treatments that are considered to be expensive. We must also predict the expected level of demand in the future, and the services that we will need to deal with that.

I am always saddened when I hear about young couples who have difficulty in conceiving a baby, especially when they are unable to avail of fertilisation services due to the great expense. Raising the money to pay for IVF treatment presents a terrible dilemma for individuals, as success can never be guaranteed. Indeed, success in the first attempt at anything is always unlikely. Recent statistics indicate that the success rate for IVF is as low as 15%, with only 19% of women who embark on such treatment ever having a baby. Couples who have experienced unsuccessful attempts have the added fear that they will be deemed unsuitable for further attempts.

It is absurd that, for a long time, access to IVF treatment has been variable across the United Kingdom. Depending on where someone lived, they may have been entitled to free IVF treatment on the National Health Service, while their neighbour a few hundred yards away may have had to fund the treatment themselves. The total cost of providing IVF treatment often extends to many thousands of pounds, which puts it beyond the reach of many couples.

Recent improvements in the success rates of fertility treatments are encouraging, but a wide disparity in results remains between different clinics. The UK public ought to be able to expect more standardised fertility service outcomes. Many young couples in Northern Ireland are unable to avail of IVF treatment because of the cost. I have sympathy with the suggestion that special consideration should be given to how women at the upper end of the permissible age spectrum can be accommodated. Couples are frustrated that waiting lists and waiting times have been so long.

Reaching the stage at which treatment is eventually obtained tends to follow a number of appointments to assess suitability and carry out further investigations. Patients can feel as if they have been dragged from pillar to post, and all the while, time is moving on, and the cut-off age at which certain treatments are allowed is coming closer. A couple who contacted my constituency office described a sad catalogue of experiences. When they were referred by their general practitioner, they were comfortably within the appropriate age range for all treatments. However, long waits and cancelled appointments meant that when they were finally deemed ready to be treated, the upper age limit for the only treatment that would make a difference had been exceeded. Appointments had to be cancelled because the consultant was ill, or on holiday, and the couple missed the age deadline to receive treatment.

Imagine the resources that had been used to get that couple to that point, all to no avail. If we are to place a special emphasis on those women who reach the upper age limit for treatments, we must consider other possibly relevant criteria. For example, some might make a distinction between couples who have no children and those who seek fertility treatment having already had children. One partner in some couples may have had children in a previous relationship. I hope that the Minister will investigate the procurement practices and use of particular drugs and treatments at the regional fertility centre as part of any review that may occur. In previous years, there would appear to have been a preoccupation with particular drugs when less expensive versions were available and proven to deliver equally successful outcomes.

It is crucial that the resources directed towards fertility services are used wisely. Excessive spending for no gain only reduces the number of couples who can be treated over any given time frame. I support the amendment.

Photo of Kieran McCarthy Kieran McCarthy Alliance

I thank the Member for West Belfast Mr Attwood for securing a debate on such an important subject. It is recognised that once people get access to IVF treatment, the vast majority of recipients are delighted with the quality of care that they receive. In 2006, Northern Ireland’s fertility clinics obtained extremely high satisfaction scores, with more than 80% of recipients having had satisfactory experiences and outcomes. However, despite the excellent quality of care in fertility clinics and the sterling work of their staff, access to such a clinic is a very different matter.

Waiting lists have already been mentioned. They are far too long, and remedies must be found to ensure that all those women who require this provision can receive it. As I understand it, there seems to be a postcode lottery for IVF treatment across the UK, with wide variations in waiting times for that treatment. I use the word “treatment” deliberately, because infertility is an abnormality that can, for many, be addressed success­fully. Everyone, regardless of postcode, should be entitled to receive fertility care. However, the UK is the poor relation of Europe for fertility treatment. That is why many Spanish clinics, for example, are making a good profit from treating couples from the UK, including people from Northern Ireland, who cannot get treatment at home.

Infertility is not a rare problem. As many as one Northern Irish couple in six are affected by fertility issues. What can be done to change the situation? Some people say that donors are put off by the lack of anonymity, while others point to the lack of investment in NHS clinics and the insufficient numbers of embryologists. Those are good points: supply cannot meet the current demand for treatment. Neither is it acceptable to continue the current situation, where many people are told to opt for private healthcare — a course of action that many cannot afford to pursue.

I understand that the cost of private IVF treatment in the United Kingdom can be as much as £100,000, and that is certainly beyond the reach of a lot of people. One relatively low-cost step that might be taken is a public awareness campaign to highlight the length of IVF waiting lists and to challenge the social stigma surrounding donation and infertility. With such a poor donation rate in Northern Ireland, we must look at what steps other European countries have taken to encourage donation.

I thank the Member for West Belfast Mr Attwood for raising the issue of age-related criteria. Ageism in all its forms is unacceptable and should be a thing of the past. We must ensure that our waiting lists are managed properly. As long as we are short of capacity, we must ensure that the couples who are in most need — particularly those who are in the upper age range for eligibility for the treatment — are given some sort of priority access.

The best long-term solution is to encourage more donors and train more embryologists, as has proved possible in other European countries. To do that, we must challenge the stigma surrounding donations; raise public awareness of the need for donations; and learn from our European neighbours how to encourage people to become donors or train as embryologists. I support the motion and the amendment.

Photo of John McCallister John McCallister UUP

This is an emotive topic to bring to the Floor. It might well be useful for the Health Committee to discuss it in greater detail and hear from the Minister, the Department and the relevant experts — the clinicians.

The subject of IVF waiting lists is, as I said, emotive, particularly for couples affected by fertility problems. However, in a world of health budgets, it is unfair to raise false hope among infertile couples and lead them to believe that an Assembly motion, proposed by a Member with no Executive responsibility for health matters, will somehow change things. Is that even the best way forward?

Today, we heard some of the figures for the Depart­ment of Health, Social Services and Public Safety’s budget, and they will hit these types of services hard. I am sure that the Health Minister will say more about that in his speech.

IVF treatment has been available on the National Health Service in Northern Ireland since December 2001. Its associated costs are a major reason for not expanding the service. The NHS estimates that the average cost of one cycle of IVF treatment is £2,771. Since 2001, the interim service has been provided with a cost envelope of expenditure of £1·4 million per annum. It has, therefore, been necessary to restrict access to the service. This lack of resources is the main reason why IVF treatment is not more freely available.

The upper age limit at which female partners using their own eggs can access publicly funded IVF treatment was raised from 37 to 38 in October 2006 and from 38 to 39 in April 2007, and an additional £50,000 was made available for counselling services in 2006.

That is, of course, an important measure.

Health and social services boards do not always have detailed figures for fertility service waiting times. The Department has proved to be responsive, with a tranche of reforms and measures over the past few years. However, the Committee could look at the subject in much more detail than the Assembly would be allowed to do. The Member has raised an important issue.

Photo of Kieran McCarthy Kieran McCarthy Alliance 3:30 am, 25th October 2007

Not that long ago — possibly in August — I proposed that the Department for Regional Development should provide free transport to the over-60s. Thankfully, the announcement on that matter was agreed today. Does the Member not think that by bringing this important subject to the Floor of the Assembly that the Minister of Health, Social Services and Public Safety might be minded to do something similar in the not too distant future?

Photo of John McCallister John McCallister UUP

First, it probably was not in August —

Photo of Kieran McCarthy Kieran McCarthy Alliance

It was in August — 19 August — that I brought the matter to the Floor of the Assembly.

Photo of John McCallister John McCallister UUP

Was the Assembly not in recess? I doubt that it was in August. However, if the Member says that it was — [Interruption.]

Photo of Kieran McCarthy Kieran McCarthy Alliance

It was on the Floor of this Assembly anyway.

Photo of John McCallister John McCallister UUP

That is probably why the Member got it passed. [Laughter.]

I take the Member’s point. We were all very supportive of that measure — particularly my colleague for North Belfast Fred Cobain, and I am sure that he will welcome it.

We are looking at a fairly meagre increase. Taking inflation into context, there may almost be a cut in health spending. Set against a backdrop of delivering the other measures that the Assembly has made it clear that it wants, such as free personal care, and given that the Minister and the Department may not have the resources to deliver, we do not want to be raising false hopes.

Photo of Thomas Buchanan Thomas Buchanan DUP

I support the amendment, as it is fuller and gives more detail on the way forward. The motion will generate interest in many couples across Northern Ireland. In 2006, a leading Belfast doctor estimated that 40,000 couples in Northern Ireland suffered from infertility. For many couples seeking to start a family and who are faced with the difficulty of infertility, few Members, if any in the House, can begin to identify with them or understand the frustration, anxiety and pressure that that can bring to bear on a relationship or on a married couple.

Many couples see IVF treatment as the lifeline to resolving their problems. However, it must be noted that IVF is successful in only a percentage of cases. Although 30,000 women in the UK undergo IVF treatment each year, statistics show that it results in approximately 8,300 births, which is less than a 30% success rate.

However, it must be acknowledged that there is a growing demand for IVF treatment. Although demand for treatment among women in their forties has soared, statistics show clearly that older women have a lower overall success rate. For example, in 2004, women who underwent fertility treatment at 28 years of age had a success rate of 25·7%, while women of 40 years of age had a success rate of only 11·8%. Therefore, in light of that, it is important that the waiting lists should be addressed urgently.

It is a dangerous scenario for couples to think that simply because IVF treatment is available, they should delay their attempts to start a family until later in life when they have finished a career or feel more ready to settle down.

The matter of IVF treatment is complex. It presents difficulties for some Members because it is so expensive and is not always successful. During IVF treatment, many embryos are created in the laboratory. They are then graded, and at least two or three are transferred into the womb. The remainder are frozen or, if they do not look healthy, they are discarded.

Some of us believe that life begins at the point of conception. Therefore, life has begun before the embryo is implanted in the womb in order for it to complete its development. As soon as an embryo exists, it has the full status of any other person. To disregard the embryo in that way is to kill it, which, in reality, is abortion. Nevertheless, some fertility clinics in Northern Ireland have enrolled infertile couples in IVF programmes on the proviso that only two or three embryos would be produced for implantation. None would be frozen, meaning that there would be no question of any fatal reduction in numbers.

With that in mind, it is important not only to address the issue of waiting lists and age-weighting criteria but to consider the wider aspects of such treatment. The NHS was founded on the principle of fair and equal access to healthcare services for all, yet, clearly, current IVF-treatment policies are neither equal nor fair and are failing many people in Northern Ireland. I support the amendment.

Photo of Alex Easton Alex Easton DUP

It is ironic that earlier this week the Assembly dealt with the subject of abortion and that today, Members are discussing the availability of IVF treatment. It was interesting to hear how those who campaign to make abortion more widely available reacted to the Assembly’s call to protect the lives of unborn children. Today, we are speaking in support of those who are anxious to have a child and who can offer the love, happiness and security of a caring family.

For many people, the inability to have a child is a colossal blow that causes great sorrow and unhappiness. That often goes unnoticed because other people are concentrating on their own concerns. It is difficult to imagine how couples who cannot conceive feel when they realise how many abortions occur every day.

Members may not be surprised to hear that the United Kingdom is a world leader in the scientific research and technology that is involved in IVF treatment. In spite of that, however, the United Kingdom is at the bottom of the European league on the availability of treatment. In Denmark, the chances of receiving treatment are three times higher than in the UK, and they are twice as likely in France and the Netherlands. In addition, there is a postcode lottery in the United Kingdom for the provision of a service that will materially change people’s lives.

It is an interesting exercise to go on the Internet and find that all over Europe, IVF treatment is privately available at a moment’s notice at a fraction of the UK cost from highly skilled and qualified physicians. Therefore, it is vital that we here in Northern Ireland do all that is in our power to emulate our European neighbours.

In the Province, the numbers seeking IVF treatment are relatively small; therefore, I appeal for sufficient resources to be made available to the Health Service in order to help those people.

The Assembly is committed to developing a society that puts the needs of people to the forefront of its thinking, to supporting the family and family values and to creating a future in which children grow up in a loving and caring family relationship. It is of paramount importance that Members unequivocally support those who require IVF treatment in order to have children. I support the call for resources to be made available to bring the Province in line with countries such as France, Denmark, and the Netherlands. It is vital that special consideration is given to that relatively small percentage of people who require treatment in order that they can know the joy of having a child of their own.

With 48% of Northern Ireland’s overall Budget being spent on health, and considering that so much of the health budget is spent on art — a policy that I know that the Minister reviewing — perhaps some of that money could be redirected and made available for IVF treatment. I hope that the Minister will perhaps consider that today. I support the amendment; it is a much better proposition than the motion.

Photo of Carmel Hanna Carmel Hanna Social Democratic and Labour Party

I support the motion in the name of my colleague Alex Attwood, and I thank him for bringing it to the House. The Floor of the House is the first port of call for such a debate, not to give false hope, but to raise awareness of the issue, which can then be matched against need and availability of resources.

In vitro fertilization via the National Health Service is characterised by long waiting lists and a restricted number of treatment cycles. Important issues that have been raised by patients include the lack of understanding of what it means to be on a waiting list. Initial predicted waiting times can be greatly underestimated. When patients eventually receive treatment, they consider it worthwhile, but they have legitimate concerns about the time that they had to spend waiting for it. For many, the wait is too long and too uncertain.

Concerns have also been raised about the fact that IVF waiting lists involve hidden costs for patients and for the National Health Service. IVF creates a human dilemma. Although the Assembly talks up the idea of supporting families, it must give them more practical support.

Dozens of couples are struck off the waiting list every year, and they either give up trying to get treatment or pay for it privately. Fertility experts have concluded that conception rates for women who use their own eggs decline after the age of 39, and that was the reason for raising the bar to 40. However, most women turn to IVF treatment only after trying to become pregnant for several years. Naturally, they may be approaching the age of 40 by the time they apply for IVF.

For women using donated eggs, IVF is permissible up to the age of 49. However, access to the treatment is patchy, and, as a result of delays and inconsistencies, many couples, despite meeting the age qualification, miss out.

Some experts recommend that the current rules for those on NHS waiting lists should be relaxed. Infertility can have devastating effects, and, after years of trying unsuccessfully to have a family, many couples face very long waits. For many, as I said, the treatment comes too late.

Although I appreciate that a cut-off point is necessary, it is important to take all factors into account and to consider that couples who want to conceive children go through an emotional and anxious time, particularly those who are growing older and facing their last chance to have a baby.

Medical science is moving on, and many women in their 40s have children. Doctors can do much more these days, and I hope that medical advances will continue in that area. Infertile couples need better services. Reducing waiting lists and extending the age limit for IVF might not be the whole answer, but cutting the waiting time is extremely important. If people are fortunate enough to join a short waiting list, they will have a greater opportunity to avail of IVF treatment.

As has been said, our fertility treatments are falling behind those of our European counterparts, as has the number of babies born as a result of IVF. I know women who have gone abroad to receive treatment, but that option is not open to everyone because of the cost.

The NICE guidelines, ‘Fertility: assessment and treatment for people with fertility problems’, which have been mentioned, recommend three cycles of treatment. However, despite that recommendation, only one cycle of treatment is currently available.

In September 2006, the then Minister with respons­ibility for health, Paul Goggins, announced new criteria for assessing Health Service IVF treatment under the headings of waiting lists, counselling services, and intra uterine insemination (IUI) treatment, but, at present, there is a lack of guidance from the Department on how to prioritise treatment for patients, and the social criteria vary.

I call on the Department of Health, Social Services and Public Safety to consult interested parties with a view to renewing the criteria in order to overcome the current inequalities, which can restrict some couples from receiving the same treatment as others.

Access has to be fair and equal. During what is an already stressful and traumatic time for those involved, couples are still being forced to wait for up to three years — that is unacceptable.

Motherhood, and preparing for motherhood — whether through pregnancy, adoption, surrogacy, or IVF — has many challenges, which are often unsatisfactorily dealt with by contradictory plans and treatments that are in place. I have contacted the Minister of Health, Social Services and Public Safety regarding some of those issues.

Photo of William Hay William Hay Speaker 3:45 am, 25th October 2007

The Member’s time is almost up.

Photo of Carmel Hanna Carmel Hanna Social Democratic and Labour Party

Finally, we need to have a comprehensive review to get better and fairer access.

Photo of Jim Shannon Jim Shannon DUP

Thers naethin laek tha feilin that ye git whun ye furst haud yer sinn’ er dochter in yer erms. It jist canny be explained an tha experience is a real ee’ apener. An as a’ prood fether o’ three strappin sinns’ aa’ cann sae this tae ye: the feelin disnae gaun awa wi’ mare wanes er tha passin o’ tiem. It is fer this raison that whun aa’ think o’ tha yins that his nae hed this apertunity. It is my desire tae help them in tha yin wae aa’ caun – an that is tae be ahint ther claim fer IVF in tha Provance.

There is nothing like the feeling that you get when you first hold your son or daughter in your arms; it cannot be expressed or explained. It is an experience that cannot be equalled and as the proud father of three strapping boys, I can tell you that the strength of feeling does not diminish with subsequent children or, indeed, with the passing of time. For that reason, when I think of people who do not have such opportunities, it is my desire to support them in the only way that I can — and that is to support their claim for IVF in the Province.

The proposer of the motion made a good case, but I am supporting the amendment, because it is more detailed and gives the issue the focus and attention that it needs.

The figures are clear. It is estimated that over 40,000 couples in Northern Ireland have problems conceiving a child, and one in seven couples have problems with fertility. As elected representatives, we are aware of the stress, trauma and heartbreak that results from those cases. People go to their GP, only to learn that in order to qualify for IVF treatment, they must have been infertile for up to three years. That is an issue that I have a problem with. The modern age must be considered. People are no longer necessarily getting married at 18. These days, women have careers that they want to pursue. Therefore, they put off having children until well into their 30s, instead of their mid-20s. That can mean that when it comes to having children, their opportunity — without their knowing — may have passed.

It is important to realise that the prerequisite of having three years’ infertility recognised by GPs will carry some women over the desired age range. The age limit for IVF treatment of 38, which was previously in place, should rightly be upped to 40. That would mean that women who have chosen a career without realising that they have a problem would be able to take advantage of the treatment.

Couples are currently offered the opportunity of three cycles of treatment. That gives a 50% chance of success. Some ladies that come to my office have had successful IVF treatment, which resulted in wonderful experiences, but others have been unsuccessful, and it has cost them a small fortune. I know of ladies who — rather than buy a house, as some of them could have done, and perhaps should have done — spent all of their money on IVF treatment that was unsuccessful. Real trauma and disappointment can be seen in those people’s faces. I know of one lady who spent £13,000 on unsuccessful fertility treatment.

It may seem that three cycles is more than generous. However, it is hard to tell that to a couple whose third pregnancy has failed and who are heartbroken. I know people who have gone to Bulgaria and Istanbul for treatment — again, at great personal cost. Some of them have been successful, and some have not. Those are issues that must be focused on.

In Denmark, more cycles per million couples are offered — these are technical issues, but Great Britain is far behind, having only 600 cycles per million couples. Those figures need to be considered.

The Scottish Executive have suggested that five cycles should be offered, in order to boost the success of IVF treatment. That is something that the Assembly should ask the Minister to consider. The waiting lists are too long, the opportunities are too restricted, and the medical professionals are too far stretched.

There are, of course, couples who cannot carry a child, which is heart-rending. However, we have got to try to help those who want to find out whether fertility treatment can help them.

Northern Ireland must have more NHS facilities with the capacity to carry out fertilisation programmes. I urge the Minister of Health to recognise the lack of facilities suffered by this field of medicine, in the UK as a whole, and in Northern Ireland in particular. He must put in place the makings of change.

I support the amendment and ask Members to do likewise. It is important for a woman to experience the unparalleled joy of having a child.

Photo of Mark Durkan Mark Durkan Leader of the Social Democratic & Labour Party

I commend my colleague Alex Attwood for bringing this important issue to the Assembly. Like other Members, I acknowledge that the amendment is a positive contribution. This is not a contest between the original motion and the amendment; it is such an important issue, and Members should reinforce what they hear each other say, to amplify our concern for the people who need those services.

As politicians, we often say that we are doing something for our children and our children’s children. We heard it said today. It is natural for people to presume that every adult or married couple has children, or, if it is their choice, that they will have them. Often, in a glib and natural way, when we use such phrases, we unintentionally remind people who go to all sorts of lengths, and cope with infertility and stress in the absence of children, of the pain that they suffer. Because we make that assumption, people who wait, hope and make all sorts of endeavours to have a child find the way in which we talk about these things painful and — literally — thoughtless.

Yet again, the Minister is present to hear Members’ concerns on important issues. As well as addressing our remarks to him and his Department, it is important that we all look at the way we talk about families, at the assumptions we make and, sometimes, at the jokes we make about infertility and its treatment. All of us could be more sensitive in that regard. I speak as one with experience. It was nearly 12 years before my wife and I were blessed with a child. At times, the way in which things are said can hurt. For that reason, I am always open to people who raise these issues.

That is also why I pay tribute to the former Minister of Health in the previous phase of devolution, Bairbre de Brún, who took an important step back in 2001 in commissioning a consultation about fertility treatment. Because it involved financial implications, I, as Minister of Finance and Personnel, had to agree that with her. In 2006 we finally obtained an outcome from the document ‘From People to Parents: A Public Consultation Document on the Future of Fertility Services in Northern Ireland’. I was pleased with some of the changes that emerged. It was realised that the limit on the number of cycles that people could have was a grave disappoint­ment. Many people had campaigned for a good outcome from that consultation; many had spent years waiting for its outcome; and many others had spent years waiting for treatment or working with people waiting for treatment. As so often the case in this situation, the success that they saw was tinged with other sadness and frustrations.

I felt, in late 2006, that the Minister responsible, Paul Goggins, did not go as far as his predecessor had seemed to promise me in the House of Commons. That predecessor was Shaun Woodward, the current Secretary of State for Northern Ireland, who talked up a much bigger and more sensitive outcome to the ‘From People to Parents’ consultation.

It is right, therefore, for the Assembly to ask the Department to look at this again. In supporting the amendment, I do not direct this to the Minister alone, or suggest that the Committee should have no role in this.

As we have heard today, both the Health Minister and the Health Committee can make a serious, sensitive and purposeful contribution to ensure that we make progress and achieve good outcomes.

We must create a situation in which people can access the services that they have been told are available, and can understand the criteria. Neither the couple nor the professionals who are dealing with them should find that they must cope with gobbledegook, as though they are a problem or an unwarranted demand on a system that has better things to do and better people to look after. This issue is fundamental to people’s ambitions for themselves, not only as private couples and individuals but as people who want to be part of a wholesome, healthy society — the type of society that Members have talked about aspiring to today. Families are at the centre of that.

Those people who are struggling to become a family need every bit of support that we can give them. Those for whom treatment does not succeed also need support, so there must be more emphasis on counselling services for those who are awaiting treatment, and for those who have had treatment and have been disappointed.

Photo of Michael McGimpsey Michael McGimpsey UUP

For those affected, infertility can be a shattering problem that affects every area of their lives. It is important that their concerns in relation to its treatment are addressed openly and fairly, and that everyone is clear about who may have publicly funded fertility treatment. It is also important that people know why there are conditions on access to services. Therefore, I shall briefly outline how those conditions were decided.

In April 2001, there was no publicly funded IVF service in Northern Ireland. As Mr Durkan has said, in response to increasing demand, the then Minister of Health, Social Services and Public Safety, Bairbre de Brún, initiated a public debate on the future of publicly funded fertility services and, specifically, which services should be funded by the Health Service.

While proposals were prepared for consultation, interim arrangements were put in place in order to allow access — albeit limited access — to publicly funded services. In the light of other competing priorities in healthcare services, limited funding was allocated to the provision of IVF. In 2001, that funding was £1·2 million, which was to allow for two cycles of treatment for women up to 37 years old. The consultation document ‘From People to Parents’ was issued for public consultation, and that document sought views on a wide range of matters in relation to IVF treatment. Opinions were sought on the specific conditions for access to the service, and those included, among other issues, the upper age limit at which the female partner could be provided with publicly funded treatment.

An analysis of the responses to the consultation was used, along with NICE guidance, where applicable, to develop revised access criteria. Those criteria were introduced in October 2006, and all the proposed changes were subject to a full equality impact assessment to ensure that they did not unfairly disadvantage any patients who wished to access the service. Many of the changes that were introduced were designed to make IVF treatment accessible to a larger number of women. The upper age limit for women using their own eggs was raised from 37 to 38 on 1 October 2006, and from 38 to 39 on 1 April 2007. That was in line with the NICE guidelines, and with the latest advice from the Human Fertilisation and Embryology Authority, the body that regulates such services. Restrictive criteria on couples with dependent children, who until then had not been eligible, were also removed. In addition, a previous policy was removed that had forced women to wait for three years before they could join the waiting list if they had an appropriately diagnosed cause for infertility.

Members will have heard me say many times that funding for health services remains very tight, and will become tighter. We have not been able to allocate additional funding for fertility services, and could do so only at the expense of other high-priority services.

Before my time as Minister of Health, Social Services and Public Safety, in order to allow a greater number of women to avail of treatment, the decision was made to reduce the number of fertility treatments from two to one per woman.

NICE guidelines recommend that three treatments should be provided. However, at the time, the number of treatments was two, which was then reduced to one. Although that is not ideal, the argument was that priority be given to making the opportunity for publicly funded treatment available to the largest number of women possible. During transition to the new policy, qualifying couples who were already on the waiting list and who had had one unsuccessful cycle of treatment were offered a further cycle in order to honour assurances that they had been given.

(Mr Deputy Speaker [Mr Dallat] in the Chair)

I recognise that NICE guidance recommends the provision of three cycles. Approximately 420 cycles are provided each year. However, 590 patients are waiting for IVF treatment. Therefore, even though one cycle per person is provided, there is still a shortage. That is why there is a waiting list. The waiting list depends purely on resources, rather than on capacity, the number of doctors, and so on. To provide three cycles on the current resource level would reduce the number of women who can avail of treatment by two thirds.

The policy is also based on age considerations. It is, however, not an ageist policy; it has had an equality impact assessment and equality assurance. The chance of a live birth for each IVF treatment cycle drops as women get older; from 20% to 15% after the age of 35, to 10% aged 39 and to 6% aged 40. Therefore, the argument is that to skew resources towards women who are at the upper end of the age limit would be less likely to achieve a successful result.

That is the current context in which the waiting list operates. Patients are dealt with chronologically from the date on which they go on the list. Waiting times are determined by the date of the consultant’s referral to the fertility clinic. Waiting times for appointments with the consultant are determined by the date of the application. In order to ensure equity, patients are added to the waiting list from the date on which their consultant at the regional fertility centre decides that they are suitable for treatment. They are then treated strictly in chronological order, in line with the systems that are in place for all other health services.

It has been suggested that women who are likely to reach the upper age limit for treatment before they reach the top of the list should be prioritised so that they are treated before their fortieth birthday. That is difficult to justify. Moving women up the waiting list can only be done at the expense of other couples who may have been waiting considerably longer for treatment. It is also recognised that the likelihood of fertility treatment being successful decreases with age, as I have explained. Therefore, skewing resources accordingly would cause a delay that could affect the chances of others who have effectively been leapfrogged on the waiting list. As I have said, those chances reduce to 6% by the age of 40. Those are the proven outcomes of fertility treatment.

It is also important to point out that when annual resources have been allocated to individual patients, no further publicly funded treatments can be provided during the financial year. In other words, when resources are used up determines when treatment is no longer offered; not other reasons, such as doctors’ time, and so on. The issue is purely one of resources. In those circumstances, it would almost always be the youngest patient on the list who would be disadvantaged.

Therefore, it is recognised practice that when the date for treatment is set, the revised policy is not applied retrospectively, nor should exceptions normally be made. I must ensure that service provision is equitable and accessible to as many women as possible and that it provides the best possible chances of successful pregnancy.

As regards a postcode lottery, and the issue of differential treatment in different parts of Northern Ireland, funding is provided by the four area boards on a capitation basis — in the same way that all other Health Service funding is provided — in order to ensure equity of access and spend. The current policy — and all of this went through the review — encourages early access to treatment. Therefore, it is possible that the access criteria that we currently have on offer provide a fair and equitable chance for all women who need publicly funded services.

Moreover, at the time when the new criteria were introduced, boards were asked to monitor referrals and waiting times over the first year in order to assess demand for services and the capacity of the regional fertility centre. The first year in which the boards have been operating under the new criteria is now complete, and the boards have been asked to report on the situation. That report will be made available at the end of November. I must emphasise that, in reviewing the policy, we are always going to return to the issue of available resources and the resources to be devoted to that service. That, of course, in times of limited resources means that there must be prioritisation of services.

There has been a review and a consultation. Criteria have been set, and they have been widespread. They do not follow NICE guidelines as regards three-cycle funding. Rather, they follow NICE guidelines on one-cycle funding. The risks were taken into account during that review. It has only been in operation for a year. The Department is about to undertake monitoring and referral of the scheme.

Having said all that, I hear the views of the House, and I understand the points that have been made. Mr Attwood has spoken to me about the issue on a number of occasions, as have Mrs O’Neill and Mrs Hanna. If it is the will of the House, I will be happy to revisit the review. In due course, I would return to the House and report on the matter. However, I would need to wait until November, by which time the referrals will have come through — that is only another four weeks. I would then be in a position to consider undertaking a review, specifically, of the issues of waiting lists, skewing for age and — the key factor — funding limitations. With regard to funding limitations, whatever the UK Government says, the trusts throughout the UK operate a funded single cycle of treatment for each patient. That is the situation. If Members request a review, I will be happy to accede to that request.

Photo of John O'Dowd John O'Dowd Sinn Féin 4:00 am, 25th October 2007

Go raibh maith agat. I apologise for being late in joining the debate. I had been chairing the Public Accounts Committee meeting. I came to the Chamber as soon as possible.

I declare an interest in the motion. I am one of the lucky people; I have a two-year-old daughter as a result of IVF treatment. I am doubly lucky, because my wife is expecting a second child as a result of IVF treatment. So, we are doubly blessed in that matter. We have been through the mill over the past six to eight years. It is an experience that is not unique to us as a couple — or, perhaps, to others in the Chamber — and it is definitely not unknown to those in wider society.

Anyone who has experienced infertility, and the treatment for it, has been through hell. That is the only way in which I can describe it. At one level, I would not wish IVF treatment on anyone, because of the physical and emotional demands that it places on the woman, firstly, and the tremendous emotional demands that it places on the couple and their relationship. The treatment is very difficult for the woman. In this debate I have heard terms such as “ICSI”, “donor eggs”, “donor sperm”, “harvesting of eggs”, “hyperstimulation injections” and “frozen embryos”.

Many a time, my wife and I have said that we could write a stage play based on the humorous side of IVF treatment. Humour was what got us through the darkest days of the treatment. The many situations in which people who are receiving IVF treatment find themselves are often a source of humour, and that humour gets people through the dark days.

We underwent a number of treatments under the original system, and those treatments were free. However, we ended up having to opt for private treatment. The average cost of treatment is £2,700, but that cost can rise to as much as £3,500. The costs of individual treatment and the specific drugs, and so on, all add up. If Members consider the physical and emotional pressures that people who are going through the treatment are under, and then add to those the worry that is experienced about bank loans, credit-card repayments and overdrafts, it becomes clear that the pressure on couples is great.

Moreover, that tension and pressure does not help the woman when she is receiving treatment. When the eggs are put back in at the start of the process, the woman is told that she must relax. However, she cannot do so because of the worry about whether the treatment will work and whether the couple can afford it. My wife and I were lucky because we were in reasonably paid jobs at the time of our treatment, so we could meet the bills. However, many couples cannot do so. Many find it impossible to afford the repayments on a £3,500 extension to a loan or mortgage, and that means that they cannot have children. That is not fair.

I know that the Minister’s budget is very tight and that he has to apportion funds where they are needed and in response to high-profile demands. However, the fact that Mr Attwood has brought this motion to the House shows that there are wider concerns in society about infertility and that further action is required to address the issue. I welcome the motion, and I clearly support the amendment, which adds to the motion. The views that have been expressed in the Chamber show that wider society wants a more concentrated approach to be taken to infertility and for couples who cannot have children to be given more support.

I particularly noted Mr Durkan’s remarks on the comments that are sometimes made to couples who do not have children. I have heard them all — both the well-meaning ones and the smart-alec ones. People should take a step back and think about what they are saying. Such comments are like a stab through the heart. People sometimes intend their remarks as a joke, but they are not funny. I appeal to anyone who is listening to this debate to think twice before making comments to couples without children, as there may be a deep-seated reason for why they do not have any.

I welcome the Minister’s saying that he is prepared to take on board Members’ views and report back to us in mid-November. I applaud the Minister for that.

I have one criticism of counselling services. I appeal to counsellors to remember that a man is involved in the process, too. I have the greatest respect for those who work in the regional fertility centre at the Royal Maternity Hospital in Belfast. From the moment that we walked in the door, we were struck by how brilliant the staff were — from the first person we met to the highest-level medic in the building. They are all brilliant people. However, when accessing and receiving counselling services, men sometimes feel that they are an add-on. They must be fully included in the counselling process.

Photo of Alex Attwood Alex Attwood Social Democratic and Labour Party

I say at the outset that the SDLP will, of course, support the Sinn Féin amendment. The amendment is welcome, as is any amendment that enhances a motion and that adds detail and direction.

I shall focus on some themes that have run through the debate. Mrs O’Neill was the first Member to mention the three cycles of treatment, which other Members, including Mr Durkan and Mrs Hanna, also mentioned later. The provision of three cycles of IVF treatment is a touchstone of fertility services in Northern Ireland, and it must be dealt with if progress is to be made. I welcome the Minister’s remarks, but, given the flavour of the debate and the fact that so many Members spoke in favour of a three-cycle outcome, I believe that the Assembly will ultimately be judged, and must judge itself, on whether it works to achieve that outcome. This issue, as much as any other, will be a touchstone as to whether there are benefits to devolution.

I welcome the comments of Iris Robinson. After reading the House of Commons Hansard reports, I know that she has been diligent on this issue over a long period, and has asked many useful and probing questions — as has my colleague Mark Durkan — in trying to advance this issue. I agree with her that there have been problems in the administration of regional fertility waiting lists.

Although I acknowledge Mr O’Dowd’s comment about the good work that is carried out in the regional fertility clinic, there are problems of management and bureaucracy, which I have experienced. I wrote a letter to the regional fertility clinic in November 2006, asking about the number of people on waiting lists in the North, and whether there could be any indicative time frame for those people to receive treatment — I did not receive a reply until 1 June 2007. I suggest to the Minister that any forthcoming review looks at how to enhance the capacity and management of the regional fertility clinic so that couples know when they might anticipate treatment.

I welcome the comments of Kieran McCarthy and John McCallister. I suspect — although it is not for me to say — that there is a role for the Health Committee in all of these matters. We can also learn from the European experience. If — as Mr McCarthy says — we are the poor relation in Europe in respect of the provision of fertility treatment, is it beyond the wit of the Assembly, the Minister and the Committee to become a shining example, rather than remain behind the game?

I concur with Mrs Hanna’s response to Mr McCallister; I do not attempt to build up the hopes of couples who come to see me. The advice that I gave to women to whom I spoke on the phone yesterday afternoon was based on a premise of “expect little and hope for much”. I know from the experience of the couple that I mentioned earlier that couples can have their hopes completely dashed. Therefore, there is a need for a high level of caution when Members speak to constituents about this matter.

The Department, the Minister and the Assembly must be challenged to turn this issue around. Mr Durkan and Mr O’Dowd were quite right to remind the Assembly that, for the all the joy that people experience from having children — I have a young child — we cannot forget that that same joy is not enjoyed by many people. On my behalf, and that of the Assembly, I wish Mr O’Dowd and his wife well in the time until their second child is born. The content of Mr O’Dowd’s speech was a personal, intimate and compelling narrative that should be a guide for Members, the Minister, and the Department in how to advance the issue.

I welcome the fact that the Minister is present and I welcome much of what he said. I particularly welcome his statement that, if it were the will of the Assembly, he might be minded to look again at how a review is carried out. I very much welcome that, and I hope that the Minister acts accordingly.

The Minister noted that, ultimately, these matters — and all such matters — are subject to constraints on funding. I was reminded that the Minister of Finance and Personnel mentioned greater end-year flexibility in today’s statement on the draft Budget.

There would be greater end-year flexibility when it came to financial opportunities during and at the end of the financial year. I suggest that, given that that now appears to be the case, it might be opportune to consider, as soon as possible, how to front-load some of that funding to provide additional flexibility for fertility services in order to try and achieve the target of three cycles of treatment.

I ask the Minister, when he is considering how to take forward the review, to take into account the questions that I and other Members have asked, and that he has the opportunity to respond to, because those questions will inform how the review is constructed. There is a range of issues to be considered, some of which might be dealt with if they were in the review’s terms of reference. I do not believe that the Department has proven the case that a woman who is about to attain the age of 40 is leapfrogging, as the Minister described it, a younger woman. I do not think that it has been proven that the older person gets an advantage that is disproportionate to the disadvantage of the younger woman.

Hard cases do not make good law, but in recent days I have been speaking to women, one of whom attained the age of 40 and was unable to get treatment. I spoke to another woman, aged 27, who last month completed her first cycle of treatment and is now looking for a second cycle. I suggest that treating women who are approaching 40 does not materially disadvantage those who are 27, 26 or 25. The clinical and medical judge­ments are difficult, because every case is different. However, it has not been proven to me, or to the couple who spoke to me about the matter, that they would have been disadvantaged in a way that was disproportionate to other categories of people. Given that nothing can be done about the couple that I have spoken about, I ask the Minister to reconsider the matter and find another way for women who are about to attain the age of 40 in the next few months to be accommodated properly and legally.

I thank everyone for their contributions to the debate; the tone and character was proper. I urge Members to support the motion, as amended.

Question, That the amendment be made, put and agreed to.

Main Question, as amended, put and agreed to.

Resolved:

That this Assembly calls on the Minister of Health, Social Services and Public Safety to commence a comprehensive review into the current criteria used to assess eligibility, including the age weighting criteria, the ongoing problem with waiting lists, and the number of IVF treatments available on the NHS, with a view to establishing a more equitable and accessible policy.