 I welcome to 10th meeting in 2015 of the health and sport committee. I have apologies from our convener, Duncan McNeill and Mike McKenzie, and I welcome the SNP substitute Graham Day with us this morning becoming a familiar face at committee. I would ask everyone in the room to switch off mobile phones as they can interfere with the sound system. You will see some of us using tablet devices, this is instead of hard copies of our papers. Yn unrhyw anythe fwrn mae'r item ffwrn сосneru connectaidiol i plantaidiol yn mawr Llywodraeth Cymru a Gweldraeth Se需, seamless rheumdredd. The second instrument is the Public Body's Joint Working Integration Joint Board, Establishment Scotland Order 2015, SSI 2015, forward slash 88. Again, there has been no motion to now and the Delegated Powers and Law Reform Committee has not made any comments on the instrument. Can I invite any comments from members here this morning? Okay, there being no comments from members, can I ask if the committee has agreed to make no recommendations. Okay, that is agreed, thank you. The third instrument this time is personal injuries NHS charges among Scotland amendment regulations 2015, SSI 2015, forward slash 81. Again, there has been no motion to now and the Delegated Powers and Law Reform Committee has made no, has not made any comments on the instrument. Can I invite any comments from members here this morning? Okay, there being no comments from members, can I ask once more if the committee has agreed to make no recommendations. Okay, that is agreed, thank you. The fourth instrument is the National Health Service Optical Charges and Payment Scotland amendment regulations 2015, SSI 2015, forward slash 86. Once again, there has been no motion to now and the Delegated Powers and Law Reform Committee has not made any comments on the instrument. In this instance, do members have any comments to make? Okay, there being no comments made is the committee agreed to make no recommendations. Okay, that is agreed, thank you. Nearly there, the fifth instrument is the National Health Service Cross-Border Health Care Scotland amendment regulations 2015, SSI 2015, forward slash 91. There has been no motion to now and the Delegated Powers and Law Reform Committee has not made any comments on the instrument. In this instance, do members have any comments to make? Okay, there being no comments from members, can I ask once again if the committee has agreed not to make any recommendations. Okay, thank you for that, that is agreed. The final instrument before us this morning, the sixth instrument is the Professional Standards Authority for Health and Social Care Fees regulations 2015, SSI 2015, forward slash 400. Again, there has been no motion to now and the Delegated Powers and Law Reform Committee has not made any comments on the instrument. Can I invite comments from members? Dr Simpson? That, in effect, passes the cost of running the Professional Standards Authority for Health and Social Care, where it used to be just health, to the bodies that it is supervising. They, in turn, of course, will pass the fee on to the individual members who are registered. I inquire as to what that would be, and it is only in the region of £3 per member, which is not a lot, but on the other hand, if you are a nurse or a midwife and have just had a 50 per cent increase in the fee that you pay to the Nursing and Midwifery Council, then this could be another straw on a camel's back. I do not think that that is maybe the right expression, but nevertheless it should be recognised and I want to put on the record that the nurses and midwives have already sustained a substantial increase in their fees at a time when their wages were initially frozen and then increased by a sub-inflation level until this year. The fact that this is a small but, nevertheless, a further increase in fees is one that I have to say I regret as occurring at this point in time. Thank you very much, Dr Simpson. Do any other members have any comments to make in this particular instrument? Those comments are now on the record, Dr Simpson. That said, does the committee agree not to make any recommendations in this instance? That is agreed. I move to agenda item 3, which is in relation to fertility treatment. That is our main business of the day. We are going to hear from some of the patient organisations and next week we will hear from a selection of NHS boards. Thank you for waiting patiently. I welcome to the meeting Susan Sheenan, co-chair of Fertility Fairness, chief executive in Fertility Network UK and Sylvia Sheerar, chair of the board of trustees in Fertility Network Scotland. You are welcome this morning. Thank you for coming along. As previously agreed, we are going to move straight to questions, if you are content with that. I have an opening question from Dennis Robertson, please. Thank you very much, convener, and good morning. With regard to the submissions, I wonder if you are able to expand slightly. When we are looking at fertility, there was not much mention of the causes in terms of male infertility. What percentage of the problems is due to male infertility in terms of low sperm count? In general, we tend to work with the figure that around a third of fertility problems are male factory issues, around a third are female issues, and around a third are joint factor problems, where there is an identified cause. That is the general clinical basis when they are assessing the number of patients with various different issues. What stage in the process, because I was looking at the process in terms of the initial one, the patient will see their GP and discuss the problems of not getting pregnant, and the GP will look at whether or not the person has appropriate diets. What stage do we look at the male fertility? Is it at that point that we find out about the sperm count, or is it at a second phase when they are being recommended? Obviously, the recommendation initially for the womb was to go to see a gynaecologist, but what stage do we look at the male? The male should be looked at very early on, because there is no point in putting a female partner through a whole range of tests and not checking out the male partner. I think that that is fairly well laid out in the pathway, which was put forward by the national infertility group. I do not have that with me at the moment, but we can certainly send a copy of that to you if you want. The male partner should be looked at very early on in the whole process to make sure that there is or is not a sperm count issue or a motility issue. Do you welcome the progress that has been made in reducing the time factor, because in some areas it was very great in some areas in terms of the waiting times? Do you welcome the reduction that we have now met in the 12-month period across the health boards? Yes, very much so. The reason that we have now met and are down below 12 months across all health boards in Scotland now is thanks to the support and investment by the Scottish Government in fertility services. It was very, very inequitable with some patients waiting three to six months and some patients waiting around about four years. There were other inequities as well, but the waiting times was a huge issue for patients. The Government's support and investment has made a massive difference and every health board in Scotland is now down below 12 months, which is really good news. That is good. Silvia, I apologise, but do you want to make a comment on that as well? I am just listening to what Susan Segan is saying. I am endorsing it entirely with regard to the work that has been done under the national group and the Scottish Government. It has made a tremendous difference in reducing it. It is fairly obvious that if you have waited a long time to have a child and you are not becoming pregnant, time is passing. The criteria, there is a cut-off point and the longer you are on a waiting list to be seen or to be given treatment, the time factor is essential in that. I can just add that the older, particularly the female partner, the older she is, the more likely she is to have fertility problems, but also the success rates tend to go down as you get older. It is really important that people are seen and diagnosed and treated quickly. The treatment is much more effective. With regard to the treatment in terms of the first cycle, second cycle and sometimes on to the third, what is the waiting time between each treatment, generally speaking? Patients should be allowed to undertake a second cycle when they are ready, but it is clinically accepted that there should be a period of a few months just for the woman's body to get back to normal. I think that the group recommendation was around about six months before you would then undertake a second cycle. The second cycle could be up to six months. If they move on to the third cycle, it could be the same type of period? It could be. Some couples might prefer to wait a bit longer. Some couples might feel that they are just not emotionally ready. Some might feel that they are not quite physically ready to undergo a second cycle within a few months. That brings me on very nicely to the fact that I did not note within the submissions that we had any areas where counselling is available to the couple or to the couples maybe after a second cycle has failed. Would you recommend counselling or does it happen? All couples should have access to counselling right the way through the whole fertility treatment. However, there is an issue with access to counselling at the moment. The counsellors and the NHS are in very short supply, and whilst we have some very good counsellors, there can be a long waiting list. If you have had a failed cycle and you really need to speak to a counsellor, you do not want to wait six or eight weeks for an appointment. That is an issue that has been recognised, and we would love to see more investment in counselling. Finally, if I may convener, I did not note anything about AID, the artificial insemination by donor, within the submissions. In certain cases, if a couple, for instance, one person may have a hereditary condition that they feel that they would not want to pass on to a child, they quite often look at a donor. How common is that? I think that that is possibly a question that is best addressed to a clinician, but I will try to answer it as best I can. There are two options. If you do not want to pass a genetic condition on to a child, you can have what is called pre-genetic diagnosis, where your embryos can be screened to make sure that the embryos that you are using are not carrying the genetic condition, or you can move on to donor treatment. That would be a decision between the clinician and the couple concerned as to which route would be best for them and their own individual circumstances. If donor treatment was the right option for the couple, then donor treatment would be the route that they would move towards, assuming that they were donor. We are not aware of the numbers in that area, are we? The numbers of people who are accessing donor treatments? I do not have the figures in my head, but I can certainly get them for you. It would be interesting, I think. You are looking for the number of people who access donor treatment as opposed to using their own? And the reasons why? Donor sperm, donor eggs or both? I think the sperm, but I mean if there are donor eggs as well in terms of that, that would be interesting. I would have thought that maybe the main area is probably donor via sperm, I would have thought, but I mean that is just my thinking. It would be good to know. In general, and this is an overall UK figure, the number of people accessing donor treatment is about 14 per cent of the number of people accessing fertility treatment in general. That would be donor treatment of any kind, but that is private as well as NHS treatment, and that is across the whole of the UK. That is fine, I think that you can be now. Dr Simpson, I will let you in a second, but we are calling the netmillans to ask for a supplementary in the cycle part of Dennis's question. Thank you, convener. It was just to understand exactly what is a cycle. Is that the whole cycle from harvesting of the embryos to implantation, or does a new cycle also constitute the implantation of frozen embryos? A full cycle of treatment should be the stimulation of the ovaries to produce the eggs, the harvesting of the eggs, the fertilisation, hopefully, of those eggs into embryos, the replacement of normally one of those embryos as a fresh transfer, and then the freezing and subsequent replacement of any viable frozen embryos thereafter. That would be what constitutes as a full cycle. Can I just be clear on that, so that a second cycle would start from the very beginning again? No, it would. A second cycle would start from the beginning once all the frozen embryos had been replaced. You can have repeated implantation as part of your first cycle. Everybody's cycle is different. In general, a couple may, for instance, yield eight to ten eggs. Maybe six of those may fertilise, sometimes more, sometimes less. If they were all viable, then in a normal cycle, you would perhaps replace one, because a single embryo transfer is the norm. It frees any that are left, and they may not all fall successfully. You could end up with one or two frozen embryo transfers as part of your first full cycle. After that, you would start at the beginning again and be stimulated to produce more eggs, and the whole cycle would start again. That would be the start of a second cycle. That's very interesting and helpful clarification. Convener, I sat on the Infertility Commission in the 80s, and I think that it's disappointing to hear that I was there as the GP psychiatrist, I have to say, not as the expert in fertility. In those days, I don't think that we had a patient representative who shows how things at least have progressed a little bit in our thinking since then. However, my role on that commission was saying two or three things. One was that every couple going through the process needed a named individual that was their support, because my experience as a GP and a psychiatrist was treating people who got quite depressed with the whole process because it was prolonged and there were all sorts of issues around it. I'm really disappointed to hear about the counselling, and I'd like to know—this is my first question—about the named person. Is there a named person when you start the process? Overall, no. Infertility Network Scotland, as the patient organisation, tries to provide as much support as possible. We have staff, again thanks to the support of the Government, dedicated staff working in Scotland, which patients can access at any time. We set up support groups across the whole of Scotland. I think that we have about 10 or 11 support groups at the moment running. We try to ensure that there is always some point of contact, whether it's from our staff or whether it's from our volunteers, where people who have questions can talk to someone. We also, as a national charity, have a support line, which is run by a trained fertility nurse—a former fertility nurse who has counselling experience. We have a range of helpliners who have been trained in basic counselling and listening skills, so we offer that service as well. We have to try to make sure that patients know that that service is there and that we do that to the best of our ability. In terms of a named person in the clinic, I think that the clinics in Scotland are fairly good at supporting patients. The staff are very supportive and very helpful. I think that the stumbling block is perhaps access to a proper counselling session, so I think that the patients in Scotland do know that there are people that they can talk to. It's perhaps when they want to access a trained counsellor that they sometimes face a weight that is unacceptable. That's interesting that we're looking at that. On the question of the cycles that Dennis Robertson raised, I pay tribute to our late colleague Helen Eadie, who campaigned very strongly on the question of the postcode lottery that previously existed. It's very welcome to hear that that has stopped. Is there still a problem in relation to age? As I understand it, there's a difference between England and Scotland in terms of the age at which your ability to access IVF actually changes. The recommendations are the same in that patients under where the woman is aged under 40 can access a different number of cycles from where the woman is aged 40 to 42. Over the age of 40, the recommendation is for them to access one cycle. Under the age of 40, the recommendation made by the national group was for the couple to access three cycles. However, in the interim, until they had equity and reduced the waiting times, the decision was made to offer two and look at reviewing the number of cycles as well as the question of existing children early in 2015, which is what the national group is doing now. The recommendation is basically the same in Scotland as it is in England. I can't see any reason why we wouldn't want to move forward to three. Would that move up to two for those over 40 or stay at one? No, it would stay at one cycle. Sorry, Sylvie. It's not for every woman aged 40 to 42. There's tighter criteria and it's where the woman has not previously accessed fertility treatment in the past and does not have a low variant reserve because some women over the age of 40 who have a low variant reserve, their chances of success would be much lower. They look very carefully at whether it would, in fact, be cost as well as clinically effective to offer them a cycle. My last question is again something that was on the commission in the 80s. One of the things that we noted then was the rather bad habit of repeated tests. You often went to a non-specialist unit for your diagnosis of infertility, but then when you moved into the IVF programme you went to a specialist clinic. I presume that's still the same, but have we eliminated the repeating of tests that were stressful for the patients or the couple and also costly to the NHS? That was one of the things that we recommended should be eliminated. I think that we've moved a lot further forward with that. The national group, when they made the recommendations, produced a patient pathway as well, which should be followed from GP all the way through. I hope that that has made a massive difference to eliminating the duplicate tests. I'm going in a moment to allow Graham in for a supplementary. I've got a road on the list as well, but I have a small supplementary myself in relation to the discussions around counselling and the need to expand that. I think that we'll listen carefully to what you said there and we'll get the NHS next week to ask them in relation to that. You also said something about the environment that couples go to in the NHS when they start infertility treatment. Is it by and large a welcoming environment and a supportive environment for the individuals and couples who seek infertility treatment? Yes, counselling is very important, but the culture and environment has to be right to support couples, so have we got that right? I think that there's always room for improvement, but in general I would say that most patients are fairly happy and feel reasonably well supported in Scotland in the NHS clinics. We did have a patient comment that when she went to her treatment there were big signs about the infertility clinic, and she didn't feel she was as yet infertile. That might be something that boards wish to consider. Would it be right to say that the terminology is supposed to be assisted conception rather than infertility? In general, clinics are moving towards names like the assisted conception unit or something with a more positive name around about fertility. This particular patient had gone to one clinic that was labelled as the infertility clinic. I think that that's a very good point that Sylvia has made. We only had the comment just over a week ago and it's something that we would like to take forward with the clinic and see if there's anything that can be done. Looking at it from a positive perspective, patients want to feel that they're moving forward in a positive way and not be labelled as infertile. That's a big culture shift over the last few years across the whole of the UK. Okay, that's helpful. Thank you for putting that up on the record. Graham, you wanted to do it? I did indeed. Thank you, convener. At just a point of information, in the infertility network submission, it says that the situation at the end of December 2012 was around 20 per cent of eligible patients could potentially access three cycles of treatment, 80 per cent, two. What's the up-to-date position? Well, everybody accesses two and two. There's nowhere where people can access three at the moment at all. Not in the NHS. The national group made the recommendation for three cycles, but in the interests of equity and bringing the waiting times down, it was agreed to move to two in the initial stages, with a recommendation that it be reviewed now, basically, that everybody accesses. Okay, thank you. I just wanted to be clear on that. Again, Rhoda, please add my forbearance here, because specifically in relation to that, or I'll let you in before myself then, Rhoda, on you go. Okay, because before the review, a number of clinics had offered three cycles on the NHS, and that dropped down to two. I mean, that seems, I mean, why? Has that had an impact on people? Yes, there were some health boards which were offering three cycles. At the time we did a survey, there were nine health boards offering three cycles, although some of them were smaller health boards, not the bigger ones. Which ones do you know off the top of your head? I can tell you which ones were offering three. The one that's in the submission, sorry, I missed it. Okay, I bought it there. Yr Sherar, yng Nghrampion, yng Nghymru, yng Nghymru. Yes, some of the smaller ones. What happened was a lot of them were offering three cycles, nine were offering three, but actually by the time the national group started, either two or three of the ones who had been offering three had already dropped to two, and that's why it was only about 20 per cent of patients in Scotland who were able to offer three cycles. Some patients were able to access three and have been slightly disadvantaged. The reason behind that was to try to get equity across the whole of Scotland, and the hope was that ultimately we would move to the three cycles that everybody would then be able to access three. If I could come in here. I'm not directly involved, but it seems to be from what I can gather from colleagues, there's an element of resistance to moving to three, despite the fact that we have now achieved equity and everybody getting treatment within the 12 months, and we don't really understand why that should be. They should be saying now we've achieved that, we moved to three, and we don't know why they're not doing it. Who is putting forward the resistance? Are you aware of who and where? It's just a general feeling from the members of the national infertility group. As the patient organisation and my colleagues who represent patients on the group, they are very, very strongly behind the need to move very quickly to three cycles. We're just feeling that it's not happening as quickly as we can. We can't see why they wouldn't just automatically move to three given that that was the recommendation of the group. The group recommended three cycles and said that once the waiting times were down to below 12 months, at the latest, early 2015, they would consider moving to three cycles and reviewing the criteria around existing children. That's what they're doing now, but it just doesn't seem to be happening as fast as we would like it to. Now is the time that the waiting times are down, that it's a no-brainer? We should just move straight to offering everybody who's eligible three cycles. That doesn't mean that everybody would get three cycles. It would only be those patients who are eligible and for whom the clinician felt it would be clinically effective to offer the third cycle. That's an important point. We wouldn't be saying that you have an automatic right to a third cycle. It's a clinical decision, however the option should be presented with fail. Is there capacity in the system that would allow that to happen? Yes, there's no capacity issue. There was an issue with capacity at Glasgow for a short time, but their new unit has been opened and they have no capacity problem at all. As far as we're aware, there's no capacity problem. In a moment, I'll take you in, Dennis. I'd add a supplementary similar line of question that Rhoda had. I think that the first thing that I would ask in relation to the boards who were previously offering three cycles, were there any capacity issues in terms of what I'm thinking about when someone or a couple starts their first cycle and then they have the ability, well, hopefully they don't need three cycles, but very likely they might need three cycles. Does that stop a new person presenting coming in to get their first cycle, so by reducing to two cycles in those health boards? I make no judgment whether that's the right thing or the wrong thing to do, but by moving to two cycles, did new couples who presented themselves get quicker access to IVF or assisted conception? I think that that's difficult to quantify because at the time that they reduced some health boards from three to two cycles, the Government invested £12 million into bringing the waiting times down, so that massively brought the waiting times down, but that happened at the same time. I guess if you were offering couples an additional cycle, then technically there would be some impact on couples coming on to the list, but I couldn't say how much that would be at the moment, and it's hard to quantify because of the investment made at the same time. The second supplementary I had was in relation to whether there's flexibility in the two-cycle system. For example, if a couple goes through their first cycle and for whatever reason they can't have a fresh transfer there and then, and the embryos have to be frozen, that wouldn't trigger something to say, because the chances of a frozen embryo meeking it through to having your child is less than a fresh embryo transfer, that wouldn't trigger something. What I'm trying to tease out is are there any flexibilities in the system as things currently stand in relation to two cycles? No, basically you're allowed access up to two cycles if it's clinically effective. If you don't have a fresh transfer, your embryos would be frozen, transferred as part of a fresh cycle, but actually there's a lot of evidence now that frozen embryo transfers are as good now as fresh transfers. There's a new study this year starting, considering whether everyone should have frozen embryo transfers and not have any fresh transfers. That's going to be starting this year. That shows how a lot of the data there's conflicting evidence in relation to what is best. I apologise to my fellow committee members, but I just have a final supplementary in relation to whether there's a need for flexibility currently in relation to two cycles. One lady may get six or seven eggs and another may get 12 or 13, but that may be in relation to clinical decisions around the protocol that the couple goes under and the type of stimulation that has done to avoid hyper stimulation. The whole thing's not an exact science, so I'm just wondering whether you feel there is a need. Without taking that judgment call, whether we should just go now to three cycles or not, whether it's things currently stand, you feel there is a need for flexibility around the two cycles? I'm not quite sure how we could be flexible around it. This possibly highlights again how important it is to have a third cycle, because quite often the first cycle is almost what the clinicians call a diagnostic cycle. They don't always get it right first time. They tweak the protocol, change the protocol for the second cycle, and sometimes it takes them to the third cycle to actually get it right. I'm not sure how flexibility within the two cycles could actually make a difference to what they offer, because if you give a couple one particular protocol and they're not responding, they will change that during the cycle if they can. It's always a moving target sometimes with couples if the woman is not responding. I think that that was very helpful to put on the record in relation to that first cycle, which has always been diagnostic in terms of how the woman responds. Two supplementaries also in relation to that. Dennis was first, and then Richard Lyle. Thank you very much, convener. It's maybe just languages, but I think you just stated that you felt that nobody was offering the three cycles. Are we sure that are you saying that no hospital or no health board is currently doing it? Is that fact or are some of the health boards moving to it that you're not aware of? I'm not aware of anybody who's not following the current guidance, which is to offer two cycles. There is the potential there that a health board may be moving from the two to the three that you're not aware of. There may be. I'm certainly not aware of anyone who's offering three cycles at the moment. As far as we're aware, everyone is following the standard access criteria and the two cycles. That's useful. There's nothing to prevent health boards offering a third cycle if they so chose to. It's not against the rules as what I mean. There's national guidelines to offer two cycles, but if a health board wanted to move to three, there's nothing in statute to stop them doing that. Given that the two cycles has been adopted and funded by the Government in terms of offering equity, there would be a rightly perceived unfairness. Again, if some health boards were offering something different, a lot of people would have something to say if some people were being offered a third cycle. The whole ethos behind that was to move to an equitable and fair system across the whole of Scotland where there was no postcode lottery and treatment did not depend on which health board you came under. It does depend on clinical reasons primarily moving from a second to a third cycle anyway. It's a clinical decision. At the moment, there's no recommendation for the third cycle. When we move to three cycles being the adopted recommendations, it will always be a clinical decision as to whether you have either a first, a second or a third cycle, because it would always be dependent on whether the clinician felt that it was in the best interests and the most cost-and-clinically effective way to move forward with a couple. I welcome the debate as anything we can do to ensure that couples can have a baby. Many of us know what trauma it can be. People are trying to have children and can't or get to a situation where they are trying everything to have a baby, and I welcome this. Basically, in your submission, can we get on to the fact of the three cycles? In your own submission, we are not to lose sight of a very invasive procedure required during fertility treatment, in that couples would not undertake a third cycle lightly. We are also going to say that there is a cogent argument made by the clinicians that not all women would benefit from a third cycle. Many patients will not—this is in your submission—require a third cycle, but you feel strongly that those who benefit from the three cycles should have that option. How many people physically go for infertility treatment and how many at the end of the day only require a third cycle? Do we have that data? I think that that is data that ISD is looking at at the moment. I am afraid that I do not have that just now, but I think that that is a piece of work that the national infertility group is doing with colleagues in ISD to look at that information. Would I be right in suggesting that maybe 20 per cent—or 25 per cent—of people go for a third cycle? Is that too low or too high? I am not quite sure where we are going. There is a difference between couples who opt for a third cycle because they would be paying privately at the moment for one and couples for whom a third cycle would be clinically effective, but they are precluded from accessing the third cycle, because there are only two cycles available to them on the NHS and they may not be able to afford a third cycle themselves, even though it may be clinically appropriate and effective for them to have that. We cannot give you an exact percentage of ISD that you will be able to give you that, but generally speaking, it is not a massive number that progressed to the third cycle. We are not saying that everybody must have it. That is what I was trying to point out earlier. The option should be there under the NHS, but not everybody will avail themselves of it, either for clinical reasons, as explained by the clinician, or because they themselves say, no, we do not want to go any further. I totally agree with you that it is a situation that I know very well. At the end of the day, the situation is that, to my mind, a third cycle could be possible because it will not be a high percentage of people who want to go there. If the continuing allows me again to come back to the point of the stress, the trauma that women go through, going through this, with the greatest respect, for a man that is not the same, for a lady that is a tremendous pressure, just for a woman to walk down the street and see children with their mothers or whatever, that is a great mental stress on a woman. Basically, I think that a percentage, the third cycle, as far as I am concerned, whatever situation that people can get to in order to ensure that they can get the full benefit and also go through in order to have a child, I believe that the third cycle should be an offer because I do not believe that it is a high percentage of people who will need the third cycle, as you quite rightly have suggested. Do you agree with that? Yes, although, as I say, I cannot give you the percentage at the moment, but we think that that is another reason why we do not understand why they are not moving to the third cycle. Well, I wish you success. It is a subject that, as I say, I have had experience of, and at the end of the day, I would support your view. I am going to let my colleagues in for supplementaries. I just wanted to add one thing there. Where couples know that the third three cycles give them the optimum chance of success. They are then denied access to that. Going forward, it is very difficult for them to come to terms with the fact that they have not given it their best shot, and that can have massive emotional and psychological effects on them going forward. Not everybody will be successful with treatment, we know that. We cannot guarantee everybody can have a baby, but what we should be doing is guaranteeing that they have the best possible chance. If they are not successful, it is easier for them to come to terms with what has been a failure to conceive and move forward. It is much easier to do that if you have given it the best chance that you have. That is quite powerful. Thank you very much for putting that on the record. I have got Graham Day followed by Colin Kear. We have heard today that the intention was, it seems, always to look to move to three cycles once we had reduced and standardised the waiting times. You have told us that you believe that the capacity is there to deliver on that, albeit we have to quantify the numbers that would be involved. In your view, is it simply finance that is behind the resistance or the apparent resistance to move to three on the part of the boards? I cannot see any other reason for them not wanting to move. It is clinically effective. When NICE made their recommendations in England, they looked at a huge range of studies and recommended that, looking at four or five different studies, they came out with the fact that three cycles gave the best balance of cost and clinical effectiveness. The national group looked at that and did their own research behind it. Everybody on the group agreed that moving forward, three cycles was the best possible way to move forward for patients. Why would anybody not want to move forward with that? I have no idea unless it is finance-related, unless the health boards do not want to give couples a third cycle because it is going to cost them. I cannot see any other reason why they would not want to do it. My question is surrounding those who self-fund within the NHS. If you have answered some of this previously, I just need to have it clear in my mind. Does that mean that people could be jumping cues in terms of waiting times for the services? You mean if they were to self-fund? If they were to self-fund, that does not impact on the NHS waiting times. Self-funding or private treatment is something completely separate from the NHS waiting times? Yes, they have a different capacity. NHS clinics that offer self-funding treatment offer a small proportion of self-funding treatment and they have a waiting list for that as well, which I think is balanced by the NHS waiting list. If a patient opts to self-fund, they can do that in a NHS clinic, but it should not have an impact on the NHS waiting times because the health board should all be contracting to do a certain number of NHS cycles in their unit. Self-funding, I would hope, would not have an impact on that. There is also the option of private treatment for people, and many people opt to go to the private clinics. I apologise, but I apologise for the ropey throat. That is okay. I think that is more or less okay. I just wanted to say that this is a very highly specialised medical field and there are a limited number of clinicians practising in Scotland. That is all I want to say. I do not see any of my colleagues bidding for a question, but I was going to ask one myself, but I will go after Dennis Roberts and Dennis Roberts. One more for me, convener. It is on this basis that you believe that it is maybe the resource that could be financial. Is it possible, just taking up Sylvia's point there, because of the specialised nature of the fertility clinics and the specialism, that there is a capacity issue, as well as a financial one, in terms of moving to the third cycle? We are not aware of a capacity issue in the NHS centres at the moment. They all apparently have, as far as we are aware, the capacity to move to the third cycle. I do not think that there is any capacity issue. That is maybe something to clarify with the health boards themselves, but we have been told that there is not a capacity and they have the capacity to move forward with additional cycles. Again, it is language. It does concern me that we are using terms like a way and we are not absolute in this area. It is maybe something that we could follow up, convener. Absolutely. I think that the work of the national group and the work of ISD around the figures is on-going at the moment. I think that there will be much more clarity around some of the figures that we unfortunately do not have at the moment, because it is an on-going piece of work. As far as we know, the clinics have the capacity. The clinicians, as Silvia said, are in a very specialised area. The clinicians who work in the NHS centres also work in the private centres. However, in terms of the actual capacity of the private centre, there should not be as far as we know any issue. That is very useful. Earlier, I mentioned whether it was better to have a fresh embryo transfer or a frozen embryo. You were putting on record the evidence around that. It started to show that there could potentially be a greater success from an embryo that has previously been frozen. In terms of the emerging evidence and technology for what is best in relation to IVF, XA and the variety of methods that are out there, have the NHS embraced all the technologies that they should do. For example, IVA is another technology where you can map the developing embryos in the first three to five days to work out which embryo has the highest chance. It is not an exact science. Of course, it has the best chance to make it when transferred back to mum. I am sure that that is one technology that I am aware of. I am sure that there are many out there that might be unproven, but exist. Are you aware of the NHS trying to embrace some of those technologies to increase the success rates? Yes. The technology that you are talking about is called time-lapse imaging technology. IVA is one particular trade name for one particular method of time-lapse imaging. Another one is embryoscope. The Scottish NHS clinics all use embryoscope. Again, that is thanks to the support of the Government that funded them. Every NHS clinic has at least one or two embryoscopes. Glasgow has four embryoscopes. It gives them the best chance of picking the best embryo to use and the ones that are best likely to turn into successful pregnancy and those that are suitable for freezing. They are embracing the technology. I suppose that that would be your opportunity to suggest other emerging technologies. That might develop into a research and development theme of questioning as much as anything, I suppose. Are there other emerging technologies? That is your opportunity to mention some other emerging technologies that you would like the NHS to at least, if not embrace, explore? The next study for me is the study around frozen embryo transfers, where there is a school of thought that a frozen embryo transfer is now as good if not perhaps better than a fresh transfer. There is a large study, a large trial starting this year, which we are working with researchers from Aberdeen and other units across the whole of the UK with. They are going to be recruiting patients for a study to ascertain whether frozen embryo transfers for everyone might actually be a better way forward. The reason might be that, if you do not have a fresh embryo transfer, you are less likely to have ovarian hypostimulation. If you stimulate the ovaries to produce lots of eggs, if you then replace an embryo while the body is in that state, there is a risk of ovarian hypostimulation. If you wait and always have a frozen embryo transfer, there is a thought that it may be better for mum providing that the success rates are not compromised and that is what we will be looking forward to. I think that that is probably the next most interesting thing for us. Unless it is specifically, or not because Rhoda has been quite patient to get in as it is specifically, I should have let you know that Rhoda is followed by Dennis. Mine was a supplementary to the previous questions about self-funding. I am wondering why people would self-fund other than for the third cycle if you do not get seen any faster if it is available on the NHS for two cycles. Why would somebody self-fund to the NHS? Some people will opt for private treatment first of all, and that is going to a private clinic. They will do that because they do not want to wait at all or because they do not fit the eligibility criteria. Patients who self-fund in the NHS centres, in a lot of cases, tend to be those who do not fit the eligibility criteria. If you do not fit the tight eligibility criteria, you have no option but to pay for your treatment. There will always be room for private or self-funded treatments because not everybody will qualify for NHS treatments. If you go to a private clinic, you get seen straight away if you self-fund in the NHS, you join the waiting list with everybody else. You do, but it is a much shorter waiting list than the general NHS waiting list would be, although there is not such a vast difference now that the waiting times have come down. If you go back a couple of years to when there was a four-year waiting list for some patients to access treatments, you could probably be seen in a few months as an NHS self-funded patients. Now that waiting lists are down under 12 months, I suspect that less people will opt to self-fund or pay for private treatment if they fit the eligibility criteria, but many patients do not fit that criteria, so they would always have to pay for the treatment in one way or another. You would be seen sooner on the NHS as a self-funder than as an NHS funded patient? Yes. The difference is that you are not really being seen on the NHS, you are being seen in an NHS unit, but you are paying for your treatment in the unit. For instance, if you go to Glasgow and you opt to self-fund, the money that you spend as an NHS self-funded patient or a self-funded patient in an NHS unit goes back into the research side of the university, so that gets invested back in there, but you are not really an NHS patient, you are just being seen and treated at an NHS centre. It is almost like being a private patient at an NHS hospital. Could that be a disincentive for the third cycle, given that people are paying for the third cycle and that pays for research? It could be. Equally, I guess that it could be a disincentive for clinicians if they are looking for people to pay for their private treatment in the private sector as well as NHS self-funding. It may be. I am really interested in a question from Rhoda Grant. The one thing that I might add to that might be that Silvia Shearer mentioned that there are only so many specialists in this field and I am just wondering if there swings around about to this whole process and by having self-funded individuals using facilities within an NHS staff is one way of retaining highly specialist staff that you might otherwise lose to the private sector. Has any mapping been done in the most senior echelongs of this expertise within the NHS or in Scotland more generally? Do you have to headhunt from globally in relation to those things? I think that most of the clinicians in Scotland work both in the NHS but also in the private sector, not necessarily just as NHS, not necessarily as self-funding within the NHS but they also work in the private centres as well. I think that every NHS clinician also has private practice. Sorry, is that what you were asking? I am just trying to work out whether you get full-time specialists in the NHS and is that a way of retaining them within an NHS facility or not? If it is not fine, I have misunderstood what the dynamic is, I am just trying to understand it for myself. It is difficult to say, Ruri, is it not? We have not got statistics that we could provide on that but it might be something that you want to ask the clinicians themselves if you are speaking or the boards themselves. We will take that opportunity. Obviously, you do not need to have that information as curious to know if you had a view on it now with a couple of additionals. I think that Richard Lyle, who was technically ahead of you, did not see Richard Lyle and then Dennis Robertson. The problem that we have is that we do not have up-to-date information. I am reading from a paper that the national infertility group report shows that, in 2012, there were 1,368 cycles provided by the NHS and 703 of those were self-funded but provided in an NHS centre. That was only 2,071 cycles provided in that year. Again, we do not have up-to-date information. Do you believe that NHS boards view infertility treatment as a low priority compared to treatment of other conditions? I think that some of them probably do view it as a lower priority than some conditions, yes, I suspect. I think that that is wrong. We also come into the fact that nowadays people get married, have to pay a mortgage, both couples are working, ladies are having babies later in life. Why do social factors such as the tendency of couples to delay starting a family has meant that demand for treatment has grown? Would you agree with that? While the incidence of infertility has remained the same, would you agree with that statement? I think that the very fact that people are leaving it longer to start trying actually means that there is a higher incidence of fertility problems in the first place. However, there is no doubt that the older you are, particularly for the women, the harder it is to conceive, you are more likely to have issues, but you are also more likely to have male factor issues as well. The longer you leave it, the more chance there is of males having issues with their sperm, either with motility or with the count. That can be a lot to do with lifestyle factors. That is another thing that we are trying to work very hard on, is to try to raise awareness and education about fertility issues and how, in some cases, some lifestyle choices that you make when you are younger can actually make a difference to you going forward when you decide to try to have a family. Well, as an admitted smoker, if you are smoking, that can reduce, but I do not do this, it is often drinking. That can also reduce your time of work. Again, when we come back to the cost of cycle, I am getting a feeling in the papers that I have got in front of me that it is roughly an average of £3,600 per cycle. Is that every cycle or also the fact that, as they go older, the cost gets higher? Would you agree that an average cycle is under £4,000? That is figures that we have been given by the health boards. An average cycle is around £3,600, and that would be for anybody going through treatment. It varies slightly depending on the number of drugs and which drugs you need, but the overall average cost is around about that figure. Just to finish off, I want to get it in my mind, an average cycle under £4,000, not all couples will go for these cycles. A very low percentage, the feeling I am getting, would physically need these cycles. Would you agree with that statement? I would agree with that. A lot of couples would either be pregnant on the first or the second cycle, some of them will go on to have a third cycle and be successful, some of them will decide not to have a third cycle and some clinicians will recommend that it is not in their best interests. I would agree that it is a low number of patients who would move forward and need this third cycle, but it is massively important for them to get it. Lastly, convener, it is just the fact that, as you said earlier, a lady who is going through this the more they have to go back, the more it may affect their mental health. No one would want to go and do three cycles if they did not need to. Nobody would want to go through fertility treatment in the first place if they did not have to. It is not the way that anybody would choose to conceive their baby. Absolutely not. If it is the only way to do it, that is the way that they will do it because it is massively important to them. However, it is not a lifestyle choice. It is not something that you would ever, ever do if you did not want to. Thank you very much. We are last 10 minutes. Dennis Robertson. I will try to be brief, convener. Is there an option for couples to look at the possibility of a multiple birth in the first instance? For instance, a transfer of maybe two or three embryos in the first instance. Do couples have that option? Or is it from a clinical perspective just the one that you get more success? The HFEA, which is the regulatory body for all fertility treatment in the UK, has set all clinics a multiple birth target, which is 10 per cent. All clinics should be trying to get to at least if not below 10 per cent of multiple births in their IVF treatment. The best possible outcome from fertility treatment is a single healthy baby. Everybody is pretty much on the same page and everybody agrees that the more embryos you transfer, the higher the risk of having twins or triplets. Twins sounds like a good idea if you are trying to have a family, it is an instant family. There are higher risks to the mum of a trip of pregnancy complications, but there are also massive risks to the babies who have been born prematurely, needing special care, which is an additional cost to the NHS, but also needing support right throughout their lives, sometimes just through their early schooling. If they have real health issues, it can follow them right through many, many years of their lives. Everybody is pretty much agreed that the best outcome is to have a single healthy baby. For most couples, a single embryo transfer would be the best way forward. It is not a one-size-fits-all. Some people may have a double embryo transfer—very, very, very few now have a double embryo transfer, especially on the first cycle. It is possible by choice as well. Only if the clinician and the patient have discussed it and the clinician feels that putting one embryo back would compromise the chance of success, if they feel that a single embryo would be successful, then no, the clinician would be very, very reticent to put more than one back. It is very interesting. Being a father of twins, it is exciting but challenging. When twins turn out well, it is great, but sadly that is not always the reality. Just two quick questions. One is, are you satisfied with the current monitoring arrangements of the success rates and are they published? The success rates are published by the HFFA on the website. At the moment, they are looking—they have done a big exercise—on how they might improve the publication of their information, including the success rates. They will be announcing later this year changes to the way that they publish their success rates on their website. My other question is, are you satisfied with the current eligibility criteria that I was stimulated to ask that point by the fact that self-funders often do not meet the eligibility criteria? One of the cases or two of the cases that I have had in the last 13 years have been where one of the partners already has a child. It does concern me if there is a new relationship that either the man or the woman who has not had any children is barred under the current system from having a child under IVF. That seems to me to be discriminatory against the individual who has not actually had a child themselves. I wonder whether you have a comment on that specific item or whether you are satisfied with the remaining threshold of eligibility criteria and the difference between self-funders and NHS. At the moment, couples are not able to access treatment if they have a child living in the home. That very much discriminates against couples who are in a second relationship where one has kept custody of the child and is therefore not eligible for treatment, but the other partner who has moved on to a different relationship would be eligible for treatment. That is very inequitable. That was one of the criteria that, along with the number of cycles, is up for review at the moment. The recommendation from the group was to move towards a criteria where couples could access IVF treatment on the NHS where one partner had no genetic child and they felt that that would be a fairer way of addressing that particular inequity. That should be under discussion with the national group at the moment, and we would hope that they would make a recommendation to change that particular criteria. I would certainly welcome that regard as being completely inequitable. I know that, when there was massive inequity with the postcode lotter, etc., that had to be solved first, but I think that there are individuals who are being badly discriminated against and, in fact, punished for taking custody, which is the really frightening thing about it, to me, that you take custody of the child on a break-up. That precludes you from having IVF. It is very wrong. We actually know of couples who have come to us very upset about this, and it has been suggested to them along the way by somebody that, actually, if they gave up custody of the child, they would then be able to access treatment, which is clearly not something they are going to do, but yes, it is very inequitable and that is something that we would very much hope will not be addressed. If it does not get sorted, can I suggest that you raise a European human rights challenge, because I really think that this is a matter of human rights that is not being addressed appropriately at the present time. Graham Simpson I thank you very much for taking the time to get evidence today. I think that it is worth saying on behalf of myself and our colleagues that, given the fact that there has been some topicality in the news in relation to children that have been born via fertility treatment, I would like to reassure you that this was a long-standing piece of work that this committee was determined to do in relation to shinealite and the opportunities and benefits that come and the happiness and joy that comes from families who have children via infertility treatment, and we are completely supportive of it. Disassociate ourselves from any negative comments in relation to that. I think that that is a reasonable thing to say, but also that you have given us a lot of information for which to shinealite and how NHS boards are dealing with these matters next week when we take evidence. Just before we leave it there, we will have a couple of minutes. If there is any final comment, you would like to put it on the record before we move into private session. I think that we would like to say first of all thank you for giving us the opportunity to come and give evidence here. This is a really important topic for us, obviously, but it is so important for patients that they get the best possible chance to address their fertility problems and to move forward. We are really welcome and thank you for your support. I hope that, moving forward very, very soon, both the number of cycles and the question of children in the home existing children are both addressed by the national group. We appreciate your support in looking at all those issues. I echo all of that. If I could just bring you back for one moment to the education project that has been funded by the Scottish Government, which we are undertaking, we are trying very much along the lines of preventative education here, going into Freshers week etc. I think that that is something that we, as an organisation, would like to encourage and enforce more, because if we can advise people not to leave it as late as they are doing for the social reasons that you have already explained, the danger is that they will then have to go through. If we can get that balance right, it should mean that there is a relatively static need for IVF treatment, as opposed to an ever-increasing need. If we can tackle it at both ends, basically, is what I am saying. I thank you for putting that on the record. Absolutely informed choice for people who wish to have families is vitally important in the work that you are doing. I commend you on that. I thank you once more for your time this morning. That does conclude the public part of our meeting, so I previously agreed to move into private session.