Health and Social Care Committee

We're going to come back into public session for our next panel on gynaecological cancers, at 11 o'clock, but I move to item 3 now. Under Standing Order 17.42, can I resolve that we exclude the public for items 4, 5 and 8, if Members are happy? Thank you. That means we go into private session; back in public session at 11 o'clock. Thank you very much.

Welcome back to the Health and Social Care Committee. We move to item 6, and this is our next session—or panel 6—on our gynaecological cancers inquiry. So, I'm grateful for our witnesses before us this morning. Perhaps you could just introduce yourselves for the public record, if I come to you, first, Sandy.

Hi there. My name is Sadie Jones—

Sadie.

—and I'm an academic consultant surgeon in the University Hospital of Wales, and today I'm here representing the Wales Cancer Research Centre, but also myself as a cancer surgeon in UHW.

Thank you, Sadie.

Bore da. Good morning. I'm Andy Glyde. I'm senior external affairs manager for the devolved nations at Cancer Research UK.

Good morning. My name is Iolo Doull. I'm actually the executive medical director for specialist services in Wales, but I'm here representing the All Wales Medicines Strategy Group. I'm the chairman of the AWMSG.

Lovely. Thank you all for being with us this morning. Perhaps I can just ask a question to you, Sadie, first of all. So, the Wales Cancer Research Centre, you've received Welsh Government funding of £5 million. I think that's up to 2026. How is that funding going to be used to address the—well, as we were told in evidence from Tenovus Cancer Care—

'the huge unmet need for gynaecological cancer research in Wales'?

Thank you. It's a really good question, and it's a question that we are looking to answer as a community at the present time. We've got new initiatives being set up to specifically address this now in the very near future. So, the cancer research strategy steering committee are going to be responsible for understanding how we can properly implement that money to grow academia in Wales, which is absolutely something that we crucially need to do, but make sure that it is given proper direction and leadership and resource—appropriate resource—where it's needed.

Thank you, Sadie. You also mentioned in your—. I'm looking at your latest annual report. You provide examples of research you are undertaking in relation to lung cancer and bowel cancer, et cetera, but there's no mention of any specific work relating to gynaecological cancers. So, I'm just trying to understand why this is. Is it a priority for you?

I think that it's difficult, isn't it, because cancer is a huge problem in many areas, and with limited resource you have to select where that funding goes, and, until recently, maybe other cancer sites have taken priority. But certainly from the Wales Cancer Research Centre perspective going forward, I've recently been appointed to one of their new steering committees, and there is acknowledgement that the situation for gynaecological cancers needs to change. And I'm absolutely certain that it will change going forwards, but perhaps it has been a lesser priority, unfortunately, until recent times, and we've suffered as a result of that.

Thank you, Sadie. To Andy Glyde, I suppose a similar question to you, just to provoke discussion here. So, Cancer Research UK, you spend £388 million—or you did spend that, back in 2021-22—but there's only a small element, I think it's about 3 per cent, spent on gynaecological cancer. So, I'm just trying to reconcile that in my own mind, I suppose, about the priority spend. You would no doubt say you want more money as well to spend in these areas, but perhaps talk to that in the context of only 3 per cent of your income being spent on gynaecological cancers.

Yes, of course. The figures that you just mentioned, in that same period, it was around £8.5 million across cervical, ovarian and womb cancers. Ovarian was by far the biggest amount there. I think, you know, very similar, in that we do only have very limited funds available. It is a significant amount of money, we recognise that, but there are a lot of cancers out there and a lot of research questions that we need to answer.

Where that is, basically, we do fund some that happens in Wales, but cancer research is a global thing. What we need to make sure, then, is that when we are making discoveries, that we are implementing them and translating them into the health service as quickly as possible, so cancer patients can benefit from them.

Yes. Is there anything else you can suggest in terms of speeding up, I suppose, health research and medical breakthroughs?

Yes. I should have also said that our research strategy does focus on cancers of unmet needs, and that’s not just gynaecological cancers; there are lots of other cancers that fit that category as well. I think there are probably a couple of things when we talk about gynaecological cancers. One is that, yes, we do need to make more discoveries into how to detect, diagnose and treat the disease, but we do know there are things that will work that we’re not really doing very well in Wales at the moment—some of the sort of optimal treatments. When you compare Wales internationally, those countries that have higher survival rates of ovarian cancer tend to have primary surgery as the first course of action for some patients, whereas we’re less likely to do that in Wales and across the UK.

Thank you. Sorry, do you want to come in, Joyce? Joyce Watson.

So, you’ve made this statement. What are the reasons underneath the statement? Why is it that Wales is less likely to do it?

I think there’s no single reason. I’m sure Sadie’s probably got some thoughts on this as well. I think, for us, we know that there are capacity issues in the NHS here in Wales, as there are across the UK. Workforce is a particular issue, and in that case, that is going to affect some decisions in terms of what treatments are available to patients, which isn’t the right thing to be doing, really.

I would like to come in on that point, if that’s okay. I think we have to be very clear that the evidence very strongly indicates that the survival outcomes are equivocal, whether a patient has primary upfront surgery, or primary chemotherapy followed by interval surgery. So, it’s very well proven in the literature that the outcomes are similar for those two groups of patients, but in fact, the morbidity associated with the surgery is better if the patient has the operation halfway through their chemotherapy.

So, in Wales, as a community, there are three cancer centres that do the surgery—Bangor, Swansea and Cardiff—and in general, yes, we do favour that interval approach, because of the morbidity for the patient and the equivocal survival outcomes. So, I'm not sure that we can pin it down necessarily to the surgery; there are lots of things that we can pin it down to, and there are lots of things that we can look at within our pathways to understand why maybe our outcomes are inferior to many other developed countries in the world.

I’m not sure that any of you are aware, but, in England, they did a big benchmarking audit—I’m sure you must be aware of this—a couple of years ago, which really looked at outcomes for patients across England, but looking at it in relation to pathways, and the way that the care was delivered to the patients in England as well. So, they have a benchmark understanding of the state of play in England, and it was a bomb, it really was, this understanding of the heterogeneity, the differences that existed, and it has really promoted lots of change to go on. We don’t have that data for Wales; that wasn’t done in Wales. The funding didn’t reach us for us to do that. However, we have conducted our own piece of work to look at it, and we have all of that data available in my hands, but because we have not got the resource and the ability to analyse it and look into it, we’ve not been able to have that same impact going forward. Now we’ve agreed to sign up to the prospective audit, going forward, which is great—that will be really valuable—but unless you know your baseline standard and where the problems are, how are you going to improve? We have that data there; we just need to have a group, funded and with time to sit down, pick it all out, work out the changes that we can make, and there are some simple, easy wins.

Can I just bring Jack in? Jack.

Actually, Chair, that was going to be my question. You've got the data in front of you; what do you need to analyse that data?

Resource. Not an awful lot of resource. We just need some time and a group of people that are put together, who have got perhaps the skill set required to make sure that that data is analysed properly and the correct lessons are learnt from it, because even the simplest person—and I'll put myself there, I guess—can see where there are some easy wins. There really are. But there will be many other more complex things that we can address from that data, and it gives us that baseline from which we can then say, 'Do you know, with the prospective audit from three years ago, look where we are now?' And then we've got something to feel proud of.

Sorry, Chair. Has that request been made for that resource?

No, not at the moment. It's been made through different groups, so through the Wales Cancer Network, for example, but it's not come up to this level, that I'm aware of.

Okay, thank you. That's really helpful. Can I just ask—? We've got a lot of questions to get through. Do you mind if Members politely interrupt, just to make sure we get through all our questions? Lovely, thank you. Gareth Davies.

Thank you, Chair, and good morning, everybody. I wanted to talk about prevention. Public Health Wales has told us that lifestyle changes—. It goes without saying, really, doesn't it, that if you quit smoking, you look after your weight and reduce alcohol, then it can reduce the risk factors for many cancers, and in particular the gynaecological cancers that we're talking about today. What research or evaluations of the Welsh Government's strategies have you incorporated into your own prevention strategies? And which of those behaviours have you undertaken to promote as healthy lifestyles, in trying to get the message across that if healthy lifestyles are adopted then it can indeed have positive consequences, potentially?

Sadie.

Yes. Great. I think a lot of the focus has been on obesity and also on HPV and screening uptake, hasn't it, really, until now, and I think the lessons are really quite clear there. A lot of promotion has gone on. Everywhere you look in the hospital there will be posters and advertising campaigns to try and raise the awareness of the importance of obesity in reducing cancer risk and the same with attending your cervical screening and HPV vaccination.

But I think there is a fundamental problem with the approach that's taken. I think that we underestimate patients' ability to want to understand actually why, so I think a lot of the promotion campaigns are there, 'Obesity causes cancer', and it becomes meaningless. People don't listen to it or engage with it anymore, and actually, when I sit down with a patient in clinic who's got womb cancer, which is caused by obesity in a lot of the cases, they're stunned and shocked and can't believe it, despite the numerous advertising and promotional campaigns that go on. And when you sit down and explain the process and why that is to them, they're so thankful for the understanding of the science of it, and it makes sense to them, and then actually that is what makes a change in a patient. It's that actual, 'Well, yes, I can understand why that is and therefore it makes sense for me to make the change.' So, I think that, actually, the way we go about reaching the patients and giving them more information, and whether we use tv and small documentaries to actually explain why these different processes lead to these situations, would empower people, empower individuals, to actually make changes in their lives that are quite easy to do and have an enormous impact.

I appreciate it's probably a technical question, but what is it about obesity that increases the risk of things like womb and gynaecological cancers? Just out of interest, what increases that risk?

Yes, I'm very happy to tell you. Fat cells actually make oestrogen. Oestrogen is our female hormone, and we all have it, but if we have oestrogen in excess of the amount of progesterone, which is it's anti-hormone—. So, there are two hormones and they kind of act against each other. If you've got more oestrogen compared to your progesterone, it causes the lining of your womb to grow more. Any time you've got more growth or excess growth in an area, the more chance of it going wrong. It's amazing that our cells reproduce and don't go wrong more often—unbelievable. But when you've got rapid growth because of more oestrogen, you're saying, 'Go on, then, have a mistake', and you're promoting it, and that's what fat cells do. They make excess hormones that then drive processes to grow more, which then tempts fate more and, unfortunately, we end up with womb cancer.

That's really interesting. Thanks for answering that technical question. I know it's probably not what you were expecting.

No, that's fine. That was an easy one.

Just finally, because I know we are pressed for time, the Wales Cancer Research Centre is utilising artificial intelligence to analyse data and better understand cancer risk. Has your research found, in terms of the link between the genetic and lifestyle factors, and the data on gynaecological cancers—? Is there a link there, and is there data that's coming, as a result of artificial intelligence, to suggest that this is a factor?

We certainly know that there are genetic links with gynaecological malignancies. Is that what you're asking?

Yes.

Absolutely. But is that coming from some of the artificial intelligence research that's going on with Wales? No, I'm not sure that that's necessarily the case, but I admit I'm a bit naive to know for definite whether that's the case or not. But we absolutely know that there are huge genetic implications for gynaecological malignancies—yes, definitely we do.

Are those screened, then? So, if somebody does have—. Because I know with bowel screening, they do have genetic—. Sorry. If there's evidence there to suggest that somebody's ancestors had certain genes to suggest that they might have that, then there is the screening options available at a certain age. Is that prevalent in cervical screening, as it is with bowel cancer screening?

We're not aware of any genetic links with cervical screening, first of all, would be the thing to say, but we are for womb cancer and we are for endometrial cancer as well. But, at the moment, it's largely reflex testing. What I mean by that is that the patient already needs to have developed the cancer to then have tests to look for genetic links, and then their family members may benefit from it. Or maybe a patient will have had a family member with a cancer that's relevant to that genetic mutation, and then they will get tested as result of that, but it's reflex testing. We don't have, at the moment, screening tests, because they are not cost effective to look for these genetic mutations in the whole population. That's not been demonstrated to be efficacious at the moment. That doesn't necessarily mean to say that it isn't; it may be that we need to do work in that regard.

Is that an ambition to get there, though? Because, in an ideal world, we'd probably want that situation, to have everybody screened and analyse these things before they happen, rather than a reactive situation. Would that be the ultimate ambition to get there at some point in the future, possibly?

That's a really fascinating and difficult question to answer. I imagine my colleagues will be watching me sweat answering this. I think the idea of that is wonderful, isn't it, that you get born and then you have a genetic profile, then you know you've got this, that and the other, and this could happen to you. That does have problems, that approach. It creates a lot of fear, and, actually, a lot of people will end up with genetic mutations and never develop those cancers and maybe live their whole life worrying and have their quality of life reduced as a result of that.

They might live to 100 or something.

There are a huge complexities with that approach. And not only that, there are many genetic mutations that we don't understand the implication of, and we'll throw all of them up, and the anxiety and the chaos that that might then create would be problematic in itself. So, there maybe is some level of ambition in that regard, but it's got to be very careful and very considered, to really understand the benefit of it.

Iolo Doull, you wanted to come in.

With one of my other hats. There are discussions about whether you should be screening for some of these predispositional variants, i.e. genes that make you likely to develop cancers later in life. Certainly our individual patient funding requests panel has had BRCA gene patients who've asked for their children not to have the BRCA gene.

Within NHS England at present, there is a trial of whole-genome sequencing, but you've got to be careful what you wish for, because a lot of the time, you've got variants that may give you cancer later in life, but should you be telling the family, what are the ethics of telling the child? Secondly, with some of the variants, it's not clear what they mean and, actually, the interpretation of the data is so complex that, though it sounds a wonderful idea, it's actually probably more dangerous. NHS England are doing a bit. There are regions in England where they will be doing whole-genome sequencing, and they had to be very careful. They've said, 'We will only look at these genes', because you will find genes that you don't know what it means, and that is even worse, when you say, 'We've found something but we don't know what it means.'

Thank you. We're short of time. I just want to squeeze one question in, and just a brief answer, I hope. What research is under way in Wales to look at therapeutic vaccines for gynaecological cancers?

None. I've tried to set one up myself, but Cancer Research UK unfortunately declined my funding application.

Right. Okay.

Awkward, yes. [Laughter.] But perfect in some ways. I'm currently working with industry to get that trial funded elsewhere. But we are looking at other therapeutics. We've got a big therapeutics trial running for ovarian cancer at the moment that we're opening in July.

Is there scope for Wales to be a test bed, then, in that regard?

Wales is a perfect research country. We are a small country and, actually, running research here and what you can get from it is incredibly powerful if we can get it going.

Okay. There we are. That's on the record. Thank you. Sarah Murphy.

That's wonderful to hear. Thank you for being here today. I'm actually going to come to you first, Sadie, if that's okay. I'm going to ask some questions now about improved diagnosis. In your opinion, how is the enhanced diagnosis work led by the Wales Cancer Research Centre being used by the Welsh Government and its partners to improve the diagnosis of gynaecological cancer? And do you think there are specific technologies in detecting gynaecological cancer that you have evaluated, or plan to evaluate, like the possibility of using liquid biopsies to support earlier cancer detection, or urine tests to detect endometrial cancers?

Thank you for the question. Yes, there's lots of attention on, obviously, earlier diagnosis; it's absolutely what needs to happen. In the context of what's going on in Wales, we have rapid-access clinics and the diagnostic hubs, where patients with vague symptoms that GPs can't quite put their finger on but know that there's something serious going on can be referred in. Those centres are very effective but very few in number, and only very few patients in certain areas can access a resource like that. So, it's actually rolling that out. What we've learnt from those approaches needs to be expanded with more resource.

There are no real existing trials looking at using urine testing for earlier diagnosis, not in Wales, but there are elsewhere in the UK. And certainly for endometrial cancer, there are trials looking at urine testing for early diagnosis there with real promising results, and we are collaborating with those centres. So, in the coming years, we will hopefully be able to open research like that in our centre.

There's also the GRAIL study, which is, of course, looking at genetic testing for patients who've been referred in on an urgent suspected cancer pathway, and, again, looking at using a blood test to simply identify whether or not there's a sign of that patient having cancer there, and simplifying the process there. So, there are efforts being made, but it needs to be more co-ordinated. We've got great—as I keep saying—phenomenal resource, actually, and a lot of ambition and enthusiasm, but it's bringing everyone together and understanding what we can actually achieve in Wales with resource, and actually drive it and get it going. That's what we're going to work towards over the short coming years.

Thank you. That moves on quite nicely then to my next question. Public Health Wales refer in their written evidence to research that’s under way to develop and implement an algorithm that would make symptom attribution in ovarian cancer more accurate. So, what collaboration is there either with the Wales Cancer Research Centre, or third sector cancer organisations, to support this research? Could you provide an update for us on the progress of this please?

These things are all being discussed at the moment. There are lots of discussions being had about how these systems are actually going to work, but nothing actually being firmed up. So, again, these are things that will be coming in the very near future.

That's wonderful to hear. Thank you very much. And finally, my question to Andy Glyde. HPV self-sampling is recognised as an opportunity to make cervical cancer screening more accessible, and increase the uptake of the test. Work around HPV self-sampling has been going on for many years, with pilots in Scotland and England. What’s your understanding of why Wales hasn’t been involved in these pilots and developments, please?

I think it's quite a complex question. Particularly with self-sampling, where we are at the moment is, as you say, there's quite a lot of research being done elsewhere. From our perspective, we don't think that the picture is quite conclusive in terms of how useful that could be. I don't think we know in full which groups of the population will most benefit from that—when you would run that et cetera. We do need to understand that better.

At risk of disagreeing to some extent, I think when we think about Wales as a research environment at CRUK, I don't think we see it as being quite as competitive as other parts of the UK, or increasingly globally either as well. In terms of our research funding, that is a bit of a challenge now. There is CReSt—the cancer research strategy for Wales—which was in response to losing out on some CRUK funding in the past, infrastructure funding, and if that's implemented, hopefully that will make a difference.

Going back to my original point right at the start, I think this is about not just where the research is held but also that readiness to adopt those innovations when the evidence is clear to us. The UK National Screening Committee will be looking at self-sampling when it makes a decision on is the readiness there in Wales to adopt that quickly and at pace. I'm not sure that's very clear at the moment—not just for gynaecological cancers; you could talk about lots of different other areas and innovations in cancer as well.

Why aren't we as attractive as other areas in your opinion?

For us, we think about the medical research environment as a whole, and it not being as strong in Wales as maybe we see in other parts of the UK. And we're not just talking about the golden triangle here. We look at Manchester, we look at Scotland and you've got quite strong research environments. Scotland punches well above its weight in terms of the amount of funding that it gets from CRUK, whereas Wales absolutely is the opposite, unfortunately.

There are lots of different things we need to do. I think, for us, there are some key things around funding—universities being given the right amount of quality-related funding to be able to really develop their infrastructure and conduct research. When we talk about clinical research, we know that clinicians and healthcare professionals really struggle for time to conduct research and we need to protect more time for them in order to be able to run the research programmes and get their patients onto trials as well.

Thank you very much. That does actually support the evidence that I've heard in the Economy, Trade and Rural Affairs Committee as well, so that's very interesting from this perspective. Thank you very much. Thank you, Chair.

Thank you. I should say, Professor Doull, there are some specific questions for you later on in this session. I don't want you to feel left out.

Can I just echo what's been said? I assume you've had Health and Care Research Wales come to speak to you. They would argue that we spend half per capita on research of what England does. So perhaps we shouldn't be surprised that people say this.

Thank you. That's really helpful. Rhun ap Iorwerth.

Thank you very much for coming in this morning. I'll ask a few questions in Welsh. Following on from that point, I'll come straight to you. I wanted to ask about your evaluation—not Andy Glyde's, which we've heard already—of the state of medical research and trials and so on in Wales at the moment and what we need to do to improve things. You've already suggested funding as one thing, but how would you describe the situation?

Am I able to answer in English?

In English or Welsh.

I speak pub Welsh.

It is not for me to speak on behalf of Health and Care Research Wales, but I'm aware that their briefing is that we spend less per capita. Health research in England has massively increased its budget—it's gone from £1.3 billion to £2 billion, and Wales's has got £42 million. With my post, I always work on 5 per cent of England. So, if you look at the funding we're spending, that's dramatically decreased. If you look at our universities, they're assessed on a cycle and they are slipping down the league tables. This is not my area of expertise, but it's the same as Andy said: it's the QR and the charities and success begets success. So, I think that that's one of the big issues.

And I think we can assume that this would impact on all cancers, including gynaecological cancers, of course. We've heard a suggestion that the lack of time and capacity of that sort is a problem as well. Would you agree with that, as you give your assessment, Sadie?

Yes, 100 per cent. I think what the guys are saying is absolutely true. When I say Wales has the potential, I agree that it doesn't necessarily have the kudos, and I fully get that. But I think there isn't time. Do you know, in my hospital, actually, we've got, currently, six trials open in gynaecological cancer, and that's run by people like myself where there is no funding in our job plans to actually do it, from the health board. So, we either do it as a hobby, and it really is a hobby—you are doing it in the nights and the mornings and all the rest of it—or you get external funding yourself, which is what I've done. But you have to reapply for that every couple of years, which is really, really demoralising. And the problem with that approach is that then people do get demoralised, and then they stop doing it eventually because it just becomes a really difficult thing, or very few people will make a big success of it and perhaps it will change. And that comes with lots of problems. That affects things like morale, attrition, and the ability to attract bright new sparks into a place because the culture's not right, do you know? So, that problem of not investing in people to actually conduct the research, to be able to give the kudos of Wales as a centre that can actually perform the research that's required is really, absolutely at the core of it.

And I know that we've discussed in recent months the decision by Cancer Research UK to stop funding a clinical trials centre at Cardiff University. I know you'll be disappointed about that as well. How do we put that right and make sure that, when decisions are made, by Governments, by research councils, by charities, that research does come to Wales because we're such a good test bed because of our scale and that kind of thing?

For context, for the rest of the committee as well, what you're speaking of there is the centre for trials research at Cardiff University, the cancer division, unfortunately, being unsuccessful in the renewal of its core infrastructure funding from CRUK, and that came about through what was our routine five-year funding round for all of our clinical trials units across the UK. It's a competitive process. We had all of our clinical trial units that we were funding in the previous round, plus new applications as well, and our research funding strategy is to fund the best research, no matter where it is. So, I think, it's important to note that what a clinical trials unit, in this sense—the name is ever so slightly confusing, but it's the place where trials are set up, where they are administered and where the analysis and then dissemination of the evidence can take place. That's not where patients are recruited. So, around the same sort of time, the Experimental Cancer Medicine Centre in Cardiff, which is CRUK funded jointly with HCRW, received an increase in its funding, and that's one of the areas where patients can be recruited onto early-stage trials.

I think where Wales, and I think this comes back to the cancer research strategy—CREST—what we were saying back then was that Wales needs to really find its niche. The conditions are there, absolutely, I think, in terms of being a small nation, a very well defined population, simple health structures, et cetera, but it needs the political will and the funding in order to really build up the medical research environment to make Wales competitive and remembering that it's not just competitive against other areas of the UK, but competitive globally now. And that doesn't mean needing to do everything, but finding its niche and where it is contributing to that global research effort.

So, what recommendation could we make as a committee to try to push Welsh Government in that direction?

I think there are probably three things. One is the cancer research strategy gives a bit of a road map for how Wales might start moving forward, and the implementation of that is going to be key. I think the funding issue, as you've heard, is also important. But we also need to make sure that the NHS is set up for research and innovation as well. Having time for research is actually really good for staff retention within the NHS as well, and we know the pressures there on making sure we've got the right workforce in place for both diagnostics and for treatment.

Yes. And, of course, we can't overstate the importance of access to clinical trials for people who are running out of options and that kind of thing.

One last question to you. We've heard from Fair Treatment for the Women of Wales that clinical studies have, historically, excluded females because of concerns about hormonal fluctuations and that kind of thing. Has that been a problem? Is that still an issue when it comes to making sure the research goes into gynaecological cancers, and that women are able to benefit from that?

I'm not aware of that, actually. I'm not aware of that being a problem at the present time. So, if it's a historical thing, I sincerely hope it is a historical thing.

Okay. As I say, it was given to us as evidence by that organisation. Diolch yn fawr iawn. Thank you.

Thanks, Rhun. Joyce, you wanted to come in, and come on to your section after that as well. Joyce.

Yes. It's just a brief question. You talk about lack of funding to take—. It's this cycle, isn't it, that universities aren't funded then things don't happen. But what I'm trying to understand is why, what's affected the funding now that might have been there before, and is there any evidence of EU funding that might have been there before, and I'm assuming there would have been some—maybe I'm wrong—not being there now having an effect? I'm just trying to understand it.

Obviously, from just gynaecological cancer, I think there's been an issue with a lack of performance, unfortunately. In order to be able to secure funding, you need to demonstrate that you're able to deliver, and that's a bit of a chicken-and-egg situation, isn't it—that it's very difficult to break that cycle. So, funding that may have been lost from the past, may be because we've not quite had enough to actually get what we needed going there going. I'm not aware of any EU funding that we had previously that has been lost, I'm afraid. That, again, may be my naivety of the situation, and I don't know, perhaps the other people on the panel do. But, certainly, being able to perform is what drives funding in the future, so we need to show that we can perform to secure that funding, going forward.

Back in, I think it was 2018, a little while ago, and the world's changed a lot since then, we launched a report called 'Bench to Bedside' that looked at the medical research environment in Wales. Even back then, we were talking about concerns around funding, about quality-related funding. So, this has been a long-standing issue. I'm happy to send a copy of the report, because I can't remember the exact detail now, but there was something in there about concerns about the loss of EU funding, that a fair amount of medical research funding was coming from EU funds, but I can't remember the exact details right now. I'd be very happy to send that in, though, afterwards.

That'd be useful. That's great, thank you.

Going on to my area, which is access to new drugs and treatments, and the provision of some of those new treatments taking longer to introduce in Wales than the rest of the UK, and one of those is the therapy drug Avastin in treating ovarian and cervical cancer. Do you want to explain to us why it's taking so long for it to be available to women in Wales? Was it an issue with medication safety, cost or what was it?

I'm not sure if Iolo might be the best person to answer that one, actually.

Professor Doull, probably.

If I could potentially answer that, I would argue that, potentially, Wales has faster access to new medicines than the rest of UK. If I give you a two-minute explanation of the process, a medicine goes to the Medicines and Healthcare products Regulatory Agency, it used to go to the European Medicines Agency, but it now goes to the MHRA. They will decide, 'Does it work, and is it safe?' And they will work out the benefit-risk ratio, and if it is favourable, it will then get marketing authorisation so you can prescribe it. It will then go for a form of health technology appraisal to work out, 'We know that it's clinically effective. Is it cost effective? Does it offer value for money?'

The two routes for that are either National Institute for Health and Care Excellence or the All Wales Medicines Strategy Group. Increasingly, NICE is appraising virtually all medicines—certainly over 90 per cent. Scotland has a separate system, the Scottish Medicines Consortium, but they follow the same pathways. So, for Avastin or bevacizumab, bevacizumab came to England through the cancer drugs fund. Now, whatever our views of the different systems, the cancer drugs fund, when it was introduced in 2016, I think, was a political statement by David Cameron, and Wales didn't follow that route, and it has been argued that that was very wise on Wales's behalf. Things have changed now, the cancer drugs fund has very strict rules on who receives what. So, this predates my involvement with AWMSG, but my understanding is that bevacizumab wasn't approved at the same time as England simply because the cancer drugs fund said that we should do it, but the evidence wasn't as strong.

It is now available within Wales. So, for new medicines, they will either go to NICE or they will go to AWMSG, and there are separate processes for most medicines; they go for a technology appraisal, and then for rare diseases, where less than one in 50,000 people have the condition, it goes to a special committee called the highly specialised technology committee. And at the end of that, they come up with either a FAD, which is a final appraisal document, or a FED, a final equivalence document, and based on that, if it's favourable, NHS England has to have that medicine available within 90 days. In Wales, it's 60 days, and that adds pressures to the system in Wales. But the medicines are generally faster than in England.

There are a couple of other routes, so there's the 'one Wales' route, and that's a very successful way that, in medicines either that haven’t got marketing authorisation, they haven't yet gone to the MHRA, or the evidence isn't quite clear, but we expect it to come through at some stage, that can be fast tracked so that the medicine is available within Wales, and at the end of two or three years, when we've got experience, that can be helpful. And it's useful for me and Sadie to meet this morning, because Sadie was saying, 'Well, actually, there are a couple of indications that are used in Europe'—the bevacizumab—'that aren't available here.’ Bevacizumab is now a biosimilar, so although it's not cheap, cheap, it's much cheaper than it used to be, and AWMSG now has a strategy of appraising biosimilars to say, 'Actually, it didn't work because it was too expensive then, but it actually might be good now,’ and so, we have a process of doing that, and I will take that on board.

Okay.

That's helpful. Thank you.

Moving on, is the lack of capacity in NHS Wales impacting on access to any drugs or treatments, in your opinion?

I can really only speak about the medicines and the access, and so, I would hope that I can give reassurance that they should be available. And if they're not, health boards have to write to the CMO saying why they're not available. But there are add-on costs, so Wales spends just over £1 billion on medicines per year; I think that's about 12 per cent of the NHS budget. But the new medicines coming through tend to be reassuringly expensive. No-one brings in a new medicine that is cheaper than the competitor, and some of the new medicines—they’re called ATMPs, so advanced therapy medicinal products—and some of those, the cost of the medicine is almost equivalent to the cost of delivering it, because some of them, you need to assume that someone's going to spend a week in intensive care if they receive the medicine. So, the add-on costs are hundreds of thousands of pounds, and though Welsh Government has put money aside for the add-on costs for ATMPs, some of the other medicines that may come through, you may need to have extra nurses, you may need extra monitoring, and I'm not sure that's always built in. And that's not my—I can talk about the medicines, but I think the add-on costs aren't always there.

Okay. Thank you. And you did talk about the difference between our system and the NICE system. So, we understand that now. But are there NICE-approved drugs that, say, the Scottish Medicines Consortium have approved, and—I can't even pronounce this—'keytruda', is that it?

Keytruda?

'KEYTRUDA' has been approved by NICE. If you don't know about it, I certainly don't. [Laughter.]

If it's had a positive approval by NICE as a medicine, it is available in Wales.

Okay.

So, I take—

I might have said it completely wrong.

No. Ninety nine per cent of the time, there are some medicines that do come through where NHS England have done a very clever deal and NHS Wales decide, 'Actually, that's such a shocking deal, we're not going to go for it.' That's probably once every three or four years.

Okay. And is there anything that needs to be done, in your opinion, in terms of access to medicine and treatment to make it more effective in Wales—because we're looking here at Wales—to ensure that women in Wales don't get left behind with specific treatments for them?

So, I think once the medicine has got marketing authorisation, it's licensed and it's got a positive health technology appraisal, I think that we should be no worse and better than England. I think it is important though to consider—. Everyone wants to have the newest and most cutting-edge medicine, and often that is in research and the two situations where patients may access medicines before marketing authorisation are either research, and you've heard that—. And that is a benign, self-perpetuating—. You know, you attract good people, patients get the best treatment; people in research studies do better than if they're not and it is good for bringing staff to Wales.

The second option is, there is a process called EAMS—the early access to medicines scheme—where, particularly for rare diseases, the pharmaceutical company has quite good evidence, but it's not quite good enough to say, 'Right, we're going to license this.' And so, there's a system where the drug company gives it for free, the patients get it for a year, say, and at the end of it, they work out: does it work and is it value for money? And I think, in Wales, we miss out on EAMS, because although it's free, there are a lot of infrastructure costs and because you haven't got that basic research, R&D structure in place, I think patients in Wales may miss out on EAMS as well. So, I think research infrastructure is very important.

Are there new developments of medicines and treatments on the horizon for detecting and treating gynaecological cancers—

Yes.

—and if there are, are we prepared to access those innovations with our partners? And is Welsh Government taking action in that space?

Yes. So, I've got my two hats on because I'm AWMSG and the secretariat of that is the All Wales Therapeutics and Toxicology Centre, and they do the horizon scanning for medicines in Wales, and they have very good links and they link in with NHS England and the rest of the world. So, they do the horizon scanning. The advanced therapy medicinal products—and these are all the new, expensive drugs coming through—the Welsh Health Specialised Services Committee will be commissioning them and Welsh Government will fund WHSSC to commission them.

So, for gynaecological cancers, I think there were two National Institute for Health and Care Excellence positive technology appraisals in 2023 for gynaecological cancers. NICE are looking, because we can work it out, and there are five coming on line in 2024. So, we know when that's coming. And I think to put it in context, for colorectals, there are 15 coming to NICE next year; there are 15 for lung cancer. So, five for gynaecological cancer is, I think, very positive. But, yes, there is a process for working out what's coming down the line and how much it's going to cost.

Thank you, and some of the background was very useful there, Professor Doull. Thank you. Jack Sargeant.

Diolch yn fawr, Cadeirydd. We've heard during this inquiry perhaps some of the most powerful evidence, not only of this Senedd term, but actually in the entirety of the Senedd, I would say, from cancer patients. The Chair referred to one patient, who is sadly no longer with us, at the start of today's meeting, and I echo his comments.

But another patient we heard from, both in video format and in front of the committee giving evidence as you are today, was Claire O'Shea, who is a cancer patient herself. She documents her journey on Instagram and it is well worth a watch—so inspirational, but so brave as well. And she gave evidence to us that said that her opinion of it was that surveys of individual patient experiences need to take place, not only during and after treatment, but well into the recovery phase as well. My question to you is: would you agree with Claire and what other improvements need to take place? And Sadie, I can see you nodding, so perhaps I'll come to you first and maybe go across the board.

Thank you, and I completely agree: Claire O'Shea's story is hard-hitting and there's a lot we can all learn from it. I think that it's time, isn't it, and being able to offer these patients more time is crucial. At the moment, we have an NHS that is on its knees—completely on its knees. In my clinic, this afternoon, that I will go to, there will be three consultants there and there will be approximately 45 patients coming through that clinic, and they all have cancer—it's all I do. Unfortunately, the time that you can offer these patients is not what it should be, so those conversations exploring the additional needs of a patient, the luxury, is often not there, unfortunately, because we have to get through the patients with the resource that we have, and ultimately the primary aim has to be to provide the treatment that they need, and actually the holistic side of it can get lost in that situation.

So, it's resource. It's always resource, and I know that everybody comes putting their hand out, but the resource is not just for the clinician's time; so, as each doctor is seeing fewer patients and able to give better quality, but also that we've got the nursing staff, because the value of the nurses in the patient's care pathway is—. You would not believe it. They are their key worker. They ring them and have chats about a whole entity of things that, as the doctor, you don't kind of get that. But also, the other holistic therapies that are out there—you know, the psychosexual counselling, particularly for gynaecological cancers, particularly for the younger patients as well. We don't have access to a lot of these things, and therefore don't have the ability to support the patients as a whole, from the very start of their journey right to that point where they're recovering from their treatment and all the rest of it.

Is that, fundamentally, a staffing problem and capacity issue, or are there additional pressures as well as the staffing? If we had the staff available tomorrow, would that service take place, or are there additional—?

I think there are additional things as well. I think, staffing, certainly, but also it's physical space. Actually, in our clinic, we've often got the people there, but we have no rooms to even see the patients in. Patients are being seen in little storage rooms, or seen initially in a kind of counselling room and then moved into a proper clinical room. We don't even have the space, and I'm talking about in the University Hospital of Wales, which is the biggest gynae cancer centre. We need more resource, staff and space to be able to provide that high-quality care that we all desperately want for our patients and that our patients deserve.

We also took evidence and heard evidence regarding dignity and respect for patients, and clearly that is an issue there regarding dignity and respect of the patients.

It absolutely can be, and these patients are often in a waiting room, as well, for actually hours waiting, because of the way that the processes are, and the organisation of the way that the clinics are run. Even that in itself could be—. If people had the time and people invested in looking at how those pathways could be changed, that patient experience, even at the simplest level of coming to the clinic and not sitting for two or three hours, whilst maybe having had an operation three weeks ago. These things are simple, easy wins that we could make.

I would agree with that. Are there any further comments, more particularly to the initial points from Claire O'Shea? Do you agree with Claire that there is room where the patient's journey needs to be—? The experience needs to be recorded in more detail and more thoroughly.

Yes. Cancer Research UK probably has less expertise in that particular area compared to some other charities like Macmillan and others, but I did have a look at the latest Welsh cancer patient experience survey results before today, and gynaecological cancer patients are less likely to have quite as good a rating of their overall care, compared to all cancers, and are also less likely to say they received enough care and help after leaving hospital as well, so clearly there is some evidence there to say that that's an issue.

I think, also, this is not just a—. Obviously, it's not just a nice-to-have. It's not just about the wraparound care of patients, but, potentially, there is a little bit of evidence to say that this could also be affecting outcomes as well. Looking at the international cancer benchmarking partnership, looking at ovarian cancer survival—and we talked a bit earlier about optimal treatments and what's available in Wales compared to elsewhere—one of the barriers reported was that lack of supportive care, in some cases reporting that they felt less able to provide optimal treatment, so that might be access to a clinical nurse specialist, it might be access to intensive care, et cetera, as well. So, I think there is definitely something there, but I'm not sure we're very clear on exactly what it is we need to do next.

Okay. I'm conscious of time, but I did say, Chair, I'd come to everyone, so, Professor.

The last thing: I would completely echo what Sadie says about holistic here, but also, for new treatments coming through, I think it's important that we understand what it means to the patient. So, we talk about clinical effectiveness and cost-effectiveness, but, actually, do they feel better for it? And I think that is something that we really need to capture, and I think there are ways that we should be doing that in a digital way. Rather than sending out questionnaires that people have to fill in, if it can be done easily and automatically, that would be much, much better. And I think that is what's needed for new medicines.

Thank you, Professor. Thanks, Chair.

Thank you, Jack. Are there any other final questions from Members, or any other final comments that the panel would like to leave us with, or perhaps anything you think would be useful for our inquiry that's not been drawn out through questions today?

We haven't talked about data, and I think—

We like to talk about data. [Laughter.]

Yes. There is something that I think we need—. We absolutely need to improve the data that we have. We need to disaggregate gynaecological cancers in lots of different metrics in order to really get to the root of what the issues are here, so that we can start finding some of those solutions.

And how do we do that?

Partly, that's down to Public Health Wales and the Wales Cancer Intelligence and Surveillance Unit, thinking about waiting time data, et cetera, being broken down, not just by different cancer types, but also we know that we need to break that down by different demographics as well, and start identifying where those inequalities exist in gynaecological cancer outcomes, and throughout the pathways, so that we can start tackling those too.

And what do they need to do?

Sorry?

What do they need to do?

What do they need to do? We need better collection of that data. We need to make sure that that's feeding through to the right registries, and being able to analyse that, in a way, publicly, so that we can start finding what those issues are.

Okay. It's of great interest to committee in terms of data. So, thank you, Andy.

From a data perspective, it's said that, without data, you're just another person with an opinion, and I think that's very important. From a medicines perspective, we would really value being able to get outcome data that should be routinely collected. It can't be beyond the wit of man to have electronic prescribing linking in to primary and secondary care data, so that you can really see, if you've got a new medicine, does it make a difference, does it keep people out of hospital, and does it make them feel better?

That's helpful. Thank you.

I would—sorry, if I could just add—absolutely, 100 per cent, support that. At the moment in Wales, we do not know our outcomes specific for our gynae cancers, and we do not know where we're going wrong and what could be improved. So, we need to know that so that we can then drive things better for the future. And, then, further to that—

What you've said there is really powerful. That sums up the situation, I think.

Yes, we don't know—we don't know. And there's no excuse for not knowing; there is absolutely no excuse.

And the other comment that I'd like to make is that, actually, we know that approximately 5 per cent of patients with cancer in Wales are involved in a research trial, and it's probably less than that in gynaecological malignancy, actually. And we know, as the panellists have said, that patients that are involved in research will do better; we know that they do better, and it can actually improve cancer outcomes and patient experience, and it definitely does. So, we need to drive that. That is a figure we've got at baseline that we can use as a benchmark to improve upon. So, we've got to get more patients in trials. Patients like to know that they're in an excellent environment. That in itself creates a good patient experience.

Thank you. It's been a really helpful session this morning, I have to say, and so was the earlier session we had as well. But your evidence this morning is really helpful, and the further explanation you've provided to us as well on some of the background issues. So, diolch yn fawr iawn. Thank you very much for joining us today. We'll send you a transcript of proceedings, but if there's anything else that you think that you want to add to what's said, then, by all means, drop the committee a note. So, thank you very much.

Diolch.

Thank you. Diolch.

Thank you.

I move to item 7. There are quite a lot of papers to note today. They're all in the public pack. I'm not going to go through them, but I'll just summarise. We've had correspondence from stakeholders on gynaecological cancers, common frameworks, and the Welsh Government's plan for transforming and modernising planned care. We've been copied into correspondence between other committees, particularly in regard to healthcare arrangements following EU exit. And there's a whole range of correspondence with the Welsh Government on other matters: a follow-up on our predecessor committee's inquiry into suicide prevention, post-legislative scrutiny on the Nurse Staffing Levels (Wales) Act 2016, and plans for a healthier food environment in Wales. So, I'm just asking Members to note the papers that are in the public pack today. Thank you very much.

Our next meeting is on Thursday, 29 June, but that brings today's public session to an end.