Cynulliad Cenedlaethol Cymru

Welcome back to the Health and Social Care Committee. We now move into the public session for today. And just to note, as we move to item 4, we have apologies from Joyce Watson for today's meeting, and Rhun ap Iorwerth joined us for items 1 to 3, but he's given his apologies for the remainder of the meeting today, because he's away—both are away on other Senedd business. So, if there are any declarations of interest, please do say now. No. And just to say as well, the meeting is operating bilingually, so, Members and witnesses, feel free to speak in either Cymraeg or English as well.

So, I move to item 5, and this is the very first evidence session of the committee's inquiry into gynaecological cancers. And just to set the scene on this: the inquiry will be looking at the experiences of women with symptoms of gynaecological cancer and how women are listened to and treated by healthcare professionals, and also looking at how services empower, care for and look after women diagnosed with gynaecological cancer, and ensure that their physical, psychological and practical needs are met. So, this is the very first session today.

I know the Senedd's engagement team has been undertaking some work and preparing us this morning to look at a couple of videos, ahead of having some further discussion as well. So, Rhayna, can I pass over to you to perhaps give some explanation for this morning's session?

Thank you, Chair, good morning, everyone. Yes, I'll be here to represent the citizen engagement team, but I'm also joined by Judi Rhys, Tenovus's chief executive, and Lowri Griffiths, who's Tenovus's director of support, policy and insight, and we will hear from Judi in a moment. But I would just like to open with a little bit of background on the engagement to date, which is still ongoing. I'll then pass to Judi for some comments before we introduce the two videos that we have prepared for you today.

So, as the Chair was saying, the committee looked to hear from women with lived experience of gynaecological cancer, with the intention of hearing about how they are listened to and treated by healthcare professionals, and how services empower, care for and look after women diagnosed with gynaecological cancers. We worked with Tenovus and other cancer charities to invite women to share their stories with the committee. Women were interviewed on and off camera, and we still have women coming forward to share their stories with you. For example, last week I travelled to Anglesey to interview a wonderful lady, and that interview is now being prepared for you. We will keep the window of engagement open for as long as possible to collect stories and, from this point on, we will then collect those stories to inform the engagement summary that will be prepared for committee towards the end of the inquiry.

When speaking with women, we gave them the opportunity to tell their story, but we also focused some questions on the information available and the awareness of the risk factors, the barriers to securing a diagnosis, and whether they felt listened to by healthcare professionals. So, before we hear from the two women interviewed, I would like to hand over to Judi for any comments that you would like to bring to the table as well.

Thank you, and thank you very much for inviting us along today. I think one of the first things I'd want to say is that we're here really to comment on the emotional experiences of the women that have approached us. So, we have supported a number of women who wanted to come forward and tell their stories to you. Tenovus Cancer Care has also submitted some written information, but we have very much supported the videos that you're going to see shortly, and of course ones that will be shown a little bit later—the ones that Rhayna just referred to. I think the ones that we see today are specifically around ovarian cancer; of course, this is a gynae inquiry, but I think what we will see is that some of the themes that come through from these videos actually speak to all those gynae cancers, and perhaps I can say a little bit more about that once we've listened to the videos. 

I'd also like to say that, clearly, this is not the experience of every single woman; we understand that. But of course, just one bad experience is one too many, and one of the things that we have found when we have listened to the videos and supported the women bringing their stories to you is a real sense that people feel missed opportunities around diagnosis, but particularly the fact that people have felt fobbed off or not listened to, and I think the emotional impact of that is being felt. People don't know their own bodies, really—they're essentially being told that. That's a huge thing, and then, when people have had the diagnosis a bit later, the regret and the emotional misery that accompanies that missed opportunity because of that later diagnosis. So, I think that's the real theme and what we're concentrating on in this evidence session. 

So, my plea really is for you to listen to the videos, to take these women's stories very seriously, and for us all to think about how we can improve this, so that it doesn't happen to other women. Thank you.

Thank you, Judi. We now have a video from Claire O'Shea. 

I'd just like to thank Claire for speaking with us so openly and honestly. Chair, I'd like to pass to you, if you and the Members have any comments, before we also bring in Judi.

Thank you, Rhayna. I think on committee, we take evidence in writing, and people come and sit before us and give us evidence, but nothing is more powerful than a real-life experience, and that was probably one of the most powerful evidence sessions, if you like, that I think we've received on this committee, so my thanks to Claire for being prepared to speak to the engagement team and relay her story. That was just so powerful. So, thank you, Rhayna, and thank you to Claire for setting out so powerfully her situation and her story and her journey. There might be some Members who have questions. I can see—. I should have said at the beginning that this is a hybrid session, so, we've got Sarah Murphy and another committee member joining us as well virtually. Did I see that you had your hand up? Did you want to come in, Sarah?

Yes, thank you, Chair. I just wanted to say that I know Claire personally and I just wanted to say to Claire directly, I suppose, if she's watching this, and I will message her as well, but I was unaware of the extent of her experience. She's been incredibly brave. She covered so many areas of this and, as she said, the impact it's had on others as well, and I just cannot imagine the distress, like she said, of calling 72 times like that and knowing that her cancer was growing back. It's unacceptable what she's been through and, yes, as you said, Russell, I'm incredibly grateful to her really—it was very powerful and I think it will resonate with many, many women out there. So, thank you very much, Claire.

Thank you, Sarah, and I know Claire is joining us in the public gallery today, so, she has heard what you have said. Are there any other Members with questions at all? I think, for me, what struck me—I was surprised the medical professionals were somehow uncomfortable talking about the subject. That really surprised me to hear that. Is there anything, Judi or Lowri, you could comment on—is that a normal experience and experiences that other women report?

Can I just say, first of all, thank you to Claire for that? Because I listen to lots of stories in my job, as you can imagine, that are very harrowing, but that one completely moved me beyond—it's an incredibly distressing story. I think Claire has talked very openly about her particular experiences. My view—and I really don't know; these are just my thoughts—is that, if it's happened to her, it's happened to others. And so, I'm sure that there are other women as well out there who perhaps are not as switched on and as assertive and intelligent and don't feel that they have that capacity as well to actually speak up and to phone 72 times. There are some people who think, 'I'm not going to phone at all, because I don't want to bother the services'. So, I think a lot of the points that Claire has made here resonate, because there are potentially many other women out there who would give up at that first hurdle when they are told, 'Oh, it's IBS', or 'It's a fibroid' and 'Just don't worry about it'.

I suspect that there are lots of questions that stem from Claire's story, but we're probably all, between us, holding back until we begin the other sessions. So, over to you, Rhayna, if you want to introduce the next video.

Thank you, Chair. So, our next video—the final video for this morning—is from Linda Drew.

And, again, thank you to Linda for speaking with us and telling her story to us. And, Chair, I'd like to pass to you, if you have any comments or any discussion points from the Members. 

Well, I'll reiterate my earlier comments—it's just powerful to hear the real-life experience. We can have papers in front of us, but to hear someone's story is more powerful than anything else. And my thanks to Linda for being prepared to speak to the engagement team and tell her story.

I suppose I'm opening up for just general discussion with Members here, and Sarah virtually as well. If there are any questions, perhaps, just to remind us, we've got Judi Rhys with us, who is the chief executive of Tenovus Cancer Care, and Lowri Griffiths who's the director of support policy and insight for Tenovus Cancer Care. So, thank you for being with us as well. So, I'm looking around to see if Members have got any questions, but, I suppose, from me—. This is the very first session. We've had this powerful evidence session this morning in terms of the videos that have been sent to us and the stories from Claire and Linda. But, as this is the first session, tell us what questions should we be asking the witnesses that have come before us? What is the best outcome of our piece of work? What should we be asking and putting to the Welsh Government, and the Minister when she comes before us, and what, ultimately, would you believe is the successful piece of work that we can do? What's the outcome that you would like to see?

Okay. So, there are a few elements to that, and, obviously, these videos, as you said, are incredibly powerful and really sort of hit home. And the themes that come out of those videos, I think—you've seen two, but we've heard other stories as well—the general themes there are these feelings of real missed opportunities along the pathway, and, I think particularly, that initial diagnosis. So, I think Linda talked about not really being aware of the symptoms, so perhaps there is a piece of work there about how do we really encourage women to understand what those symptoms are, what those red flags are, and, actually, to empower women to be able to come forward to their GPs and not take 'no' for an answer.

One of the things that I feel—and certainly in the stories I've heard while I've been with Tenovus Cancer Care—is people, women, know their own bodies, and I think that came through in both of the testimonies that you heard this morning. We instinctively know when there's something not right, and if you are being dismissed as being neurotic or, 'It's just a bit of wind' or, 'You're overweight', actually, in your heart, you know that's not the case. So, it is a case then—that's the next part—that when you first have that encounter with primary care, it's so important that people are listened to and that those red flags are addressed. But what people want to know is, 'Okay, it may just be IBS, it may be something and it's not going to be cancer', but how do you actually eliminate that? Because with all of us, when we go forward to the GP, whatever it is, we don't want that bad news, do we, but we want to be reassured that sufficient tests and investigations and diagnostics have been done, that we can actually say, 'No, you haven't got cancer' or, 'You haven't got the worst-case scenario'. 

So, I think there is a piece of work there about, first of all, awareness, and we need to do something about that in terms of how GPs actually interact with the patients. And I think as well, when Claire talked about some of her experiences with some of the male doctors, what's going on there, I suppose, in terms of the education, the way that the doctors are taught—. I know that GPs and other doctors throughout their training will have modules on communication, but increasingly, when people come to us, that is the thing that seems to let people down—that they're not feeling listened to. So, that's an important part of it, I think.

And then it's about those diagnostic delays and, clearly, it's imperative, whatever the type of cancer, that it does get diagnosed at an early stage. That's been alluded to already. The differences between being diagnosed at stage 1 or stage 3 and 4 really, really impact on survival outcomes and treatment options as well. So, it is about looking at that pathway. One of the things that really struck me is that, often, we talk about, 'Oh, we need more money, we need more resources, we need more in the workforce'—and I'm not saying that we don't—but, actually, a lot of these mistakes or delays that are made along that pathway are just either human error or a lack of communication. Turning up for an appointment and perhaps not having read the scans. Well, why is that? Or not having access to the scans or not knowing other bits of the puzzle. So, it's not very joined up, and we see that quite a lot and, actually, that is something. It is about developing the processes so that they are more robust. So, that's another part of it.

And then, obviously, that's the diagnosis, but then when we get into the treatment, we need to make sure that women have access to the best possible treatments and that that is not down to a postcode lottery—where they live, who they happen to see, what happens to be the specialty in that area. So, that's another part of it.

And I suppose the final part, really, is that all of the developments in terms of diagnosis, treatments and, therefore, outcomes are very much linked to the amount of research that goes in. So, where are the clinical trials, where is the access to clinical trials for women who are diagnosed, to have access to? So, that's the pathway, really.

So, I guess all of those things we would like to get listened to. But the big message here is to really drive home the impact that this has on women's emotional health, and not just the women, but all of the people who are around who love them, their family and their friends. What's happening with that communication, why are they not being listened to, and why are women, who are intelligent and articulate, know their bodies, being told that they're neurotic and being fobbed off? That's unacceptable.

Thank you, Judi. I have some questions, but do you mind if I bring Jack Sargeant in, and then I'll bring you in, Lowri? Perhaps you might be able to address Jack's question. Jack.

Diolch yn fawr, Cadeirydd. It's just my assessment, really, and perhaps not really too much of a question, from the videos that we saw, from both Claire and Linda's stories, and deeply troubling stories as well. I wrote something down on the top of my paper in front of me from Claire's video: 'medical gaslighting'. You've talked a lot, Judi, about communication and perhaps lack of or poor communication. The assessment from me, from the two videos I just saw there, is it's perhaps not the communication. The communication module in university or whatever is not going to solve that problem, and it seems to me that, as a committee, we need to look as to why medical gaslighting is happening. Whether it's naivety from doctors—some doctors might be very good, some might not—but it seems to me that communication, perhaps, is an issue, but there's an issue under that, which is the gaslighting. Is that a fair assessment of what I've witnessed here? Because, it's in both, to me. Obviously, Claire mentioned that quite directly, and with Linda, it came across in that story as well, that that was happening to her, 'Well, it's IBS. You're overweight', et cetera. This is people going to the doctor, and they may, in the future, need to go to the doctor for something else, but you wouldn't want to, would you? So, it seems to me that the committee needs to find a way of looking into that in our evidence sessions. But I just wanted to gauge if I'm on the right lines here and I haven't got that wrong.

And before I bring, perhaps, Lowri in, can I just say, the big question for me, in one word, is 'why'? Because a GP or a health professional go into the profession to help people, and help people through an illness, and they want to reduce people's anxieties and concerns—that's what you would have thought, that's what motivates people who work in the health profession. So, why have we got those experiences? What sits behind that, I suppose? Lowri.

I don't have the answers to that exactly. But I'd just make a couple of comments, and in response to your point around the medical gaslighting, which Claire has raised, and, actually, was raised by Linda as well, and there are another two experiences that I think you're going to be presented with through Rhayna's team's work, and that runs across those as well. My plea to you, as you go through this evidence session, is to, yes, hear that people will be telling you that the majority of women are okay, and they do okay, and this is a small minority, to take that and actually question that because, actually, what we know is that these aren't just a few one-offs. We've been able to access and speak to women whose experiences are very, very similar in terms of what's happened to them, in terms of the medical gaslighting, back and forth to their GP, et cetera, et cetera. But it's not just in primary care; it swings into secondary care as well. And I'm sure that, as you hear those other experiences and get to read more, you'll hear about the gaps and the missed opportunities right along the pathway.

And I know Claire's experience is not finished; where she's finished that video, there's more to tell now in terms of her experience. Actually, Claire's in a worse position than she was at the end of that video, which you will learn about during the remainder of this consultation. So, there are opportunities here, right across the pathway, not just in primary care, but into secondary care as well. And I suppose it's not just—. You'll be confronted by professionals who tell you that these are experiences that don't happen very often, but, actually, they're happening too often. And you might be presented with Welsh Government telling you that 95 per cent of people are happy with their cancer experience, and things like that, but that is still a big percentage of people who aren't. And it's becoming systemic. And that's what we're seeing.

We found this really difficult, actually, as an organisation. We deal with cancer every day, don't we, and we've said—. My colleague Nick is here as well, who's worked with us on this. It's been very emotional for us as well, because you kind of think, 'Blimey, we're dealing with this every day, but this really does bring it to life'. So, yes, my plea would be, when you hear these, and when you hear people say that the majority of people are okay, just to remember that, actually, too many are not, and that's backed up by the waiting time targets at the moment. So, we know that it's about 50-52 per cent of people who are currently meeting the waiting time guidance at the moment. Within gynae, that's so much later—it's down to the mid 30s, and it's even worse in some health boards than others. So, that just tells you that there's a real challenge within this particular cancer site. So, the experiences that we're bringing actually do reflect something in the data as well, and we need to address that quite urgently, actually, so that we don't let women across Wales down with these particular cancer types. I don't know, Judi, if there's anything else you wanted to—

I would just like to mention one thing, just in case we don't get a chance to later, and that is, as I said at the start, the videos are around people with ovarian cancer, yet one of the things that came out was that a number of people who were in the videos, and other people, feel that, if they've gone for their smear test—the cervical screening—somehow, if they get a 'clear' for that, they haven't got gynae cancer. People are not really aware that the smear test—the cervical screening—does not cover other gynae cancers. And I think that that is something that struck me—that there do seem to be women perhaps who may have some symptoms out there, but they think, 'Oh, I've been for my smear check, so I know it can't possibly be that'. So, for me, there is something about looking at how we spread awareness around what the red-flag symptoms are, and, actually, what the smear test is for and what it's not for, so that women and the general population will understand that. I think that was almost like a simple thing that hadn't really occurred to me, but I've heard the story now quite a few times—people saying, 'I've had my smear test, so I didn't think it could possibly be anything to do with a gynae cancer.' I just feel that's an important point about campaigns and awareness that we need to think of in the future. Thank you.

Thank you. I'm just looking to see if any other Members have got any other questions. From me, I think it's important to say that, as a committee, we recognise that this is an area that needs to be challenged and scrutinised, and there are other Members of the Senedd who are not members of this committee who I know feel quite strongly about the issues that we're exploring as well. I can see, Sarah, you wanted to come in at that point. 

It was just, as we're having a kind of general discussion, coming back on what you were asking, and what Jack commented on as well, this comment—as a woman myself, and having had so many letters and concerns from women across my constituency—this medical gaslighting. I've always experienced it as a kind of squeamishness. And it's not just male clinicians, either. It's also sometimes female clinicians. I think that that is extremely common. Also, there's so much evidence out there to show that this is historical, this is worldwide. We've seen it with inquiries into endometriosis as well. A lot of it comes down to the fact that women are seen as going to the GP for less serious issues or are more quick to complain. There's actually evidence out there that support that, which is ridiculous. It's been scrutinised inaccurately.

Women are less likely to be given opioids for pain; we know this. If they go to accident and emergency, and we're going to be looking at this later—. Sometimes their cancer is not diagnosed, and so they have to go to A&E, and yet studies show that they are left in A&E longer, and they are not seen by a specialist. They're logged as being a less urgent case. We even know there's evidence to show that, when women are having a heart attack, because the pain for them is similar, sometimes, to the pain experienced during a period, and because they've been told all their lives that that pain is normal and manageable and nothing to worry about, unlike men, they don't realise that they're having a heart attack because they don't associate that pain with something very serious, because it's been minimised all their lives. 

I suppose I just wanted to add that. Again, when you go to a GP or if you go to A&E and you have somebody who immediately takes you seriously and immediately listens to you, it's rare, and it's such a relief that I know so many women feel. I don't want to put this all onto clinicians at all—I think they are rushed off their feet, and I know that this is something that we will come to, as well. But as you said, Jack, this is something that I do believe should be the focus. This is something that we can't look away from, really, in terms of how women are treated across the board. What we're seeing in this inquiry is that it's costing lives. It's costing lives and mental health. 

Thank you, Sarah. Jack.

Thanks, Chair. Looking back at part of Linda's video, she described the setting as, 'Didn't really go to the doctor's, decided something was wrong, went to the doctor's'. I think the words were that it became a bit of a pain or a nuisance, going back and back. Is there a case, in your experience—and you might not know this—of people who perhaps have been to the doctor's more often for a various number of reasons, and are maybe regular visitors? When they present to the doctor with a problem such as Linda had, is their experience any different to someone like Linda who perhaps hasn't gone to the doctor's before, or not often goes to the doctor, who now starts going with this problem? We used the words 'medical gaslightling', saying that it's IBS and this, that or the other. Can you see differences, or have you seen differences in those experiences already, or is it that it doesn't matter if you've been to the doctor very regularly throughout your pattern of life, when it comes to this particular diagnosis, it's different?

I think it's complex, isn't it? You have some arguments that say that if you—. It's interesting; I've had a couple of conversations in the last week, actually, saying that somebody went to their doctor and saw their regular GP—'You're fine, you're fine, you're fine'—and then the locum comes in and says, 'Oh, there's something wrong here, let's send you off for a scan', and at that point you're kind of identified as having a cancer.

And then you have another set of arguments that say if you've got that continuity of your GP, and they know you, and then at that point they say, 'Actually, that's unusual for you'—. So, I think it's complex, and I don't think there's one answer for everything, but I hear what you're saying. If you're a worried well-type person who's presenting, and it's like, 'Oh, it's Mrs Jones again, she's here again and she's flagging up problems', are they going to be dismissed as ongoing in terms of her neurosis? I suppose that's what you're asking, and I don't think there's an answer.

That's what primary care have to navigate every single day, and it is a challenge. But I think what we want to do is for people to actually think more proactively 'Could this be cancer?', because one in two of us born after 1965 are going to get cancer. So, primary care shouldn't be saying, 'This is quite an unusual case', because, actually, it shouldn't be—one in two of us is going to get cancer. They should be ruling out that cancer much earlier on, whether or not they're somebody who goes frequently or not. But I think it's more complex than saying that. 

As an outsider with absolutely no medical skills at all, take my practice records, Chair—maybe a few times for football injuries, a couple of times for mental health problems. If I turned up with some pain, it probably is a bit of a red flag for the doctor to say, 'That's a bit strange'. There is certainly something there, but I think perhaps it's a question for GPs and so on. 

Thank you. Is there any sort of final—? I'm not putting you on the spot; I think you've probably relayed what you wanted, but is there anything else you finally want to say to us in this opening session, Lowri or Judi?

Only that we've made such great strides in terms of investing in cancer services, with things like the rapid diagnostic centres, for example, now being set up throughout Wales. I just think we have to use them for the purpose. They are there to make sure that people are fast-tracked through to eliminate cancer, and at the same time maybe pick up some other issues and get those treated. I think there is something about really making sure that people working in primary care make use of the rapid diagnostic centres, because they're there for the benefit of the whole of their population. They're meant to make everybody's life better and have better outcomes for their patients. I think it's great to be investing in all of these things, but they have to be used, and that has to translate through to better outcomes. 

I appreciate that the issues that we're facing and discussing this morning are not just to do with the person that's going through that situation; it's their families as well. You can almost think, as a man, that this is a situation that women have to face, but it's their families, of course, as well, which is significant in this. For me, surely sometimes it's for peace of mind that you want to have an update; even if the update is there is no update, you just want to be sure that you're not forgotten about in this system somewhere. But these are some of the issues that we'll explore during the course of our work.

Lowri, Judi, thank you ever so much for helping us set the scene for this session. And Rhayna, thank you for leading on the engagement from the Senedd's engagement team. I suppose, most importantly, thank you to Claire and to Linda for their powerful stories that they're willing to share with us. We sincerely wish them well. Thank you.

We'll be back in public session in about 10 minutes. We'll just take a 10-minute break and be back at 11:50. 

Welcome back to the Health and Social Care Committee. We move to item 6 in regard to our evidence session on our gynaecological cancers inquiry. This is our second session this morning. We've had an earlier session. We had a couple of video experiences from those that are going through their own journey, which were very powerful and really did set the scene, I think, for the beginning of our inquiry. As we move to this session now, perhaps I could just ask the witnesses to introduce themselves.

I'm Dr Aarti Sharma, I'm a consultant gynae oncologist at the University Hospital of Wales. I'm here today representing the British Gynaecological Cancer Society; I'm the Welsh representative. Thank you. 

I'm Sarah Burton. I'm a Macmillan lead gynae cancer specialist nurse, based at Velindre Cancer Centre, and I'm here today to represent the Royal College of Nursing. 

I'm Richard Peevor, a consultant gynaecological cancer surgeon in north Wales. I'm the lead for gynaecological cancer in Betsi Cadwaladr health board and I'm today representing the Royal College of Obstetricians and Gynaecologists.

Thank you, all, for being with us, and thank you for your advance papers ahead of the meeting as well; that was very much appreciated. Members will have a series of questions over the next 45 minutes. By all means, just indicate if you want to come in on a question. If you're not asked directly, just feel free to come in. It's an informal session; we want to know and catch your views. 

My first question is around symptom awareness, which is crucial. I suppose I want to try and understand what are the most effective approaches in that regard. I'm especially thinking about older age groups, where incidence of cancer is higher. So, perhaps any opening messages that you wanted to present to us, but, specifically, my question is about what approaches in terms of symptom awareness are the most effective. If we ask questions, don't feel you all have to come in, but, probably on this question, if you all want to come in on this, it might be helpful just to set a bit of a scene. Sarah Burton. 

I think it's a really good question, and it's something that I feel the general public, our female population, need to be more aware of—what signs and symptoms they need to look out for. It's looking at health promotion and awareness. That can be on many different platforms. You've specifically said the older generation. Some will be on social media, various platforms, but others won't, so that's whether they can still have posters up in public places, female toilets, but also looking at different modes of information, so if they are on things like Facebook or Twitter, somewhere that they can easily access it. Women's magazines, I think, would also be a good point. I don't know what—

I think a lot of the elderly population do attend GP surgeries as well. There is information that is normally put up in general practices. I think awareness is very important. I think we are slightly in a tougher position, because we're not dealing with just one cancer. It is broadly put under gynaecological cancers, but it's not one cancer. There's a cancer of the womb, there's a cancer of the cervix, there's a cancer of the vulva, there's a cancer of the ovary, and there's a cancer of the vagina. So, they're all different cancers that have different presentations. So, trying to club everything under one makes it very, very difficult. So, raising awareness is—. I think it's a term we are saying, that, yes, we should raise awareness, but it has to be a very directed effort. And though the older population is important, we should not forget that the younger generation as well tend to ignore a lot of things. Women's health in general, I think, is ignored a lot. But if we can make that difference to that one woman, we are making a difference not just to that woman; it's her entire family, it's the extended family. So, we actually do have to work very, very hard to raise this awareness. It's not just one cancer; it's many cancers. And, like Sarah said, of course, public places are a very important thing, but maybe they have to be more targeted at high-risk population or smaller areas, where there does need to be more education regarding this. It can be through pamphlets through the letterbox. Why not? All of that does require funding, though, which is always the problem. 

Okay. Thank you. Richard. 

Just to echo those comments, I think also it needs to introduce into the next level, which is very much different cancers within the group that are classed as gynaecological cancers. On ovarian cancer, Welsh studies have shown very poor knowledge of symptoms in the public's perception. And these symptoms are all quite vague symptoms, which are much more commonly attributed to gastrointestinal conditions. And, so, even if patients go with an awareness of a symptom that could be a gynaecological cancer, in primary care they're often not being investigated as that as a first-line test. So, as well as increasing the education and awareness for the public, it's also increasing the awareness in primary care, even in these years as well. And I think that primary care aspect is also a large part of things we need to talk about.

Thank you. Sarah. 

Could I just add I totally agree with what Richard is saying? And if we're looking at gynaecological cancers, the Target Ovarian Cancer charity looked at the Welsh pathfinder study in 2016—I was part of that report—and although we're now talking, and that was seven years ago, there was a huge campaign, an educational campaign, for GPs, all across Wales, who were all sent educational packs, posters, little cards to give out to patients within the GP practice. So, it was to obviously inform the patients, the females that were coming to the practice, but it was also to try and educate the GPs. But that was seven years ago, and I'm sorry to say that I don't think there's been any improvement with regard to GPs understanding those sometimes non-specific symptoms, and also for the patients to understand them.

So, is your suggestion that what happened seven years ago wasn't effective, or that that was effective and it should happen again?

It needs to happen again. It needs to be a regular occurrence. It can't just be, 'Oh, okay, well we'll—

But was it effective seven years ago? Do you think it was effective?

I think it was effective, because the patients that we had coming through at that time, some of them had actually seen the posters in the GP surgery and had taken the little cards that they could then keep in their purse. One of the main problems with making a diagnosis for ovarian cancer, very often, if they get bloating or a change in bowel habits, some GPs were actually making a diagnosis of irritable bowel syndrome. But in a woman who's 55 or above who's never had that diagnosis, that's unlikely to be irritable bowel syndrome. But some of those patients had picked up on the literature that was there seven years ago and were able to go and challenge the GPs, and say, 'No, I don't think I have got irritable bowel syndrome. I've actually looked up on Target Ovarian Cancer's website, because I've seen this little card; I want you to investigate me for ovarian cancer.'

Okay. And, Dr Aarti, did you want to come in?

I think it was just to echo that as well, that the education part can't just be a one-off. This has to be on a regular basis. I do appreciate GPs have a lot to deal with—I'm married to one—but it is very hard for them, because they are obviously dealing with so many problems, and it's trying to pick up what is actually quite a rare—. Even though there are many cancers, it is quite rare to have a gynaecological cancer, and I think the statistics previously used to be that a GP would potentially see one or two ovarian cancers in a period of five years. So, I don't know whether that's changed. It might have changed a little bit, but it's trying to educate them to pick out what is going to be a problem and refer in an appropriate manner. Clearly, we don't want everybody with gastrointestinal symptoms to flood gynae oncology, but, equally, timely investigations. And education is key. It's education of the public, education of health practitioners, in every level, really. 

And you think that the programme of that public information sent to practices and GPs seven years was effective. Why do you think it's not happened again?

Cost. 

Cost. Does it cost a lot?

I don't know what the actual overall cost was at the time, but Target Ovarian Cancer worked with Welsh Government and had some funding, and one of our executive nurses was involved at Velindre Cancer Centre at the time. So, there was a cost element, because all the information that Target Ovarian Cancer obviously provided—. So, the charity provided that, but then there was the postal costs, because we're talking about all GP practices in Wales. 

Okay. I wouldn't have thought—. That's not a significant cost in the big scheme of things, because if the charity is providing the information, it's just the postage cost, effectively—the material cost. 

But somebody has to pick up the tab for that at the end of the day, though. 

They do, yes. 

And perhaps it's not just the cost; it's probably just taking the ownership of it. It was done once, it was successful, so it's been forgotten about. But it's important. If it's worked, we need to make it a regular habit, with somebody taking ownership of making that a regular habit. It needs to be done on a yearly or a two-yearly basis. 

Okay. Jack Sargeant. 

Yes, thanks, Chair. From what we've heard already on the videos and so on, public awareness is really up there, isn't it, as a key driver, and, of course, GPs or medical professionals themselves having that awareness. The campaign was successful. If it had Government funding, surely it would have had some sort of review at the end of it, to be successful. And I just don't understand why, if the payback was good, which, clearly, we're hearing today it is, why Welsh Government wouldn't continue it. 

Well, we can explore that. 

And it's how you measure it. 

Just to pick up on that, then, how would you measure it?

Well, that's exactly the thing—how do we measure it? Because we've obviously said it, as we had patients saying this, but unless there is funding to look at that as well, as to how effective these methods are—. It probably has to be through patient surveys as well. So, it can be both ways. It can be a healthcare practitioner survey, and it can be—. It just needs to be, I guess, an all-Wales survey, because we say that it was effective, but, really, the only way to measure that would be hearing it from the patient or the people who were educated to do it. 

That's why I think we need to look into that, Chair. 

Yes, absolutely. We're short for time as well, so we'll just try and get through some other questions. On steps being taken to eliminate stigma as well, especially through co-production, including examples of best practice with women experiencing the greatest stigma, I'm perhaps looking for examples of that. I think Richard wants to come in. Richard. 

I think, probably, the stigma with gynaecological cancer in the more elderly population of our most common cancers—of womb and ovarian cancer—isn't particularly high. I think, probably, where people think of stigma, you think more of some attitudes to cervical cancer, which tends to occur in a younger age population. Currently this week, there's the British Society for Colposcopy and Cervical Pathology—the BSCCP—conference going on, and I've just been listening to lectures this morning about inclusivity in the screening programme, gender awareness in screening, and also work on self-screening rather than health practitioner screening programmes, where patients are self-sampling for cervical screening, and possibly even only collecting a urine test rather than swabs. 

[Inaudible.]—UK-wide on these projects, which, actually, are very close to being implemented, to try and help address groups of the population who might find going to a practitioner for cervical screening uncomfortable, or even, sad to say, that they feel it's inappropriate for them to come for screening when it's actually very important for them. So, I think cervical screening is probably the area that we need to look at with regard to that, and a lot of work is being done on it. 

Thank you, Richard. And just briefly, because we've got so much to get through, but Sarah Burton first. 

Sorry. Just to pick that up, even, I would say, for women to go along who are having vaginal bleeding—not because of a cervical cancer, but if they have got an underlying cancer of the womb—especially our ethnic minority women, having an internal examination is a very embarrassing thing to have done. And if that patient's GP is a male, or they're referred in and they can only see a male doctor, that can be a huge barrier for them. And I think we just need to be aware of that. 

And I was just going to add a little bit more to that. So, Richard's obviously said cervix, and you've said it could be any cancer, but it's the vulval cancers as well. And during COVID, people did not present at all, and we've now seen a whole load of advanced cancers from what is quite a treatable cancer, because it's external. Women are shy. They don't want to actually present anyway, and not having the access to the GP—. So, a lot of women will not necessarily go to the GP if they've got itching, or this and that down below, but it can sometimes be that they've seen the GP and, 'Oh, by the way', rather than going just for that presentation unless it's horrendous. So, there are delays. 

I know Gareth has some questions around that area as well, so I'll perhaps bring Gareth Davies in at this point. 

Yes, thank you, Chair. Good afternoon and thanks for joining us today. The first part of my question you've answered, because I think we've well established now the issues around GPs. But we've heard in earlier evidence this morning the issue around male GPs perhaps understanding, recognising, having the confidence to diagnose some of these issues. So, what exactly is the issue there, because, obviously, we're aware of the amount of training it takes to become a GP? What are those reasons? Is it just simply embarrassment, or a little bit of hesitancy, or do we need some more training and some more confidence around that?

There are actually a few issues. The issues are, male GPs—a lot of women don't necessarily feel—. They do feel embarrassed. The other issue is that, even if you do go to a male GP, if there isn't a chaperone around, which, unfortunately, in GP practices, there aren't, it is actually quite intimidating for the doctor as well to examine. So, often, what they will do is either get the receptionist to come and stand as a chaperone—which is completely inappropriate, but they don't have a choice—or they will be in a situation where they will book them in for another clinic with a female GP to get examined, which also causes delays. It's not something that a male GP wants to do, but it is the nature of the problem—that it's an intimate examination, and they shouldn't really be doing an intimate examination without having somebody chaperoning, because it can go either way.

Understood. 

So, those are ground-level problems. 

Is it more of a logistical problem and, possibly, a staffing one as well, to a degree?

Staffing is as well, yes.

I'd just like to add to what Aarti said. I fully agree with that, but there can be a training issue as well if that GP hasn't done vaginal examinations, because they're taught in their fourth year as a medical student, so it depends whether they've gone on and done any further training. So, they may not feel as comfortable, and a lot of our women who do come to us with a gynaecological cancer diagnosis, very often, they have irregular bleeding, so if they are lucky to get a GP appointment in a timely manner—because that's a huge issue—and if it's a telephone one first, then they're asked, 'What's the problem?' 'Oh, I've got irregular bleeding,' or 'I'm bleeding at the moment, I've been bleeding for the last three weeks'. Very often, they are told, 'Well, I can't really examine you if you're bleeding, so come back when the bleeding's stopped'.

I suppose what I'm trying to get to the bottom of is whether there are any specific clinical pathways or diagnostic tools to protect against things like, perhaps, women being diagnosed with IBS or even, in some cases, as being a hypochondriac or neurotic, or something on those levels. Are there those pathways there to determine—in some cases, it might just be IBS or something different, but that approved pathway in order to highlight some of the more serious gynaecological cases? Are those in place?

Richard Peevor.

There are the National Institute for Clinical Excellence guidelines on suspected cancer diagnoses. One of the two most detailed ones represent the two most common of our cancers, ovarian and endometrial womb cancer, and the ovarian one does have clear guidance with regard to symptomatology and the use of the CA125 screening test in those postmenopausal ladies. But I can appreciate that the GPs have to read these, not just for gynaecological cancer, but for all medical conditions, and it is finding that needle in the haystack with gynaecological cancer, but there are pathways out there that are validated and evidence based.

To echo that some of the other ones, vulval and cervical cancer, they're very brief, sadly, which are: if it looks like a vulval cancer, refer it urgently; if it looks like a cervical cancer, refer it urgently, and that requires the examination and the issues that Dr Sharma has just mentioned as well, and Sarah.

Thank you for that. Finally, could I seek a view on the suggestion made by Cancer Research UK in their written evidence that a self-referral route should be available for some types of gynaecological cancers such as endometrial cancer, where symptoms are less vague, possibly? So, is there a view on that written evidence from CRUK?

It depends on where they are talking about self-referral to. It's very difficult to self-refer into the gynaecology department, because everything has a waiting time. But these patients, to be very honest, if they go to the GP with bleeding, especially after the menopause, there's a very clear guideline that they have to be referred within two weeks. So, the appointment has to be within two weeks from first seeing the GP, so I think there is a clear pathway on that.

So, would self-referral not be seen as a way of simplifying that process in some cases, then?

I suppose it can be, but it would be quite difficult, because you have to have the capacity. At the moment, anything that is referred from the GP is seen, or ideally seen within two weeks. So, if self-referral is suggested, how do we create the capacity for that? Probably, again, there'll have to be a little period of seeing how many people are willing to self-refer like that, and how it can be set up in secondary or tertiary-level care.

Richard.

I suppose that postmenopausal bleeding patient—the GPs have to refer all of those through. The Macmillan study showed that only 25 per cent of patients were waiting three months from having symptoms to being referred, so a self-referral pathway for a very specific symptom like postmenopausal bleeding would take out a potential wait. But just to echo Dr Sharma's comment there, in the 13 years that I've been in north Wales, we've seen suspected cancer referrals for gynae cancer go from 1,600 per annum to 4,000 per annum, and so we've more than doubled our suspected cancer referral appointments, but we haven't had the resource to—[Inaudible.] So, obviously, resources need to come with a pathway like that, due to the expected increase in numbers.

Thank you, Richard. Sarah Murphy.

Thank you very much, Chair. Thank you, all, for being here this morning. My next section of questions follows on quite nicely; it's about improving diagnostic pathways. First of all, I'd like to ask some questions about the RCOG’s report 'Better for women', which refers to the women’s health hubs that are being developed under the women's health plan in England. So, it would be very helpful if you could give us some information about what they offer, how patients access them, who staffs them, and whether there is any evidence of how effective they are in improving early detection. But also, we wanted to know specifically if they are primarily focused on sexual and reproductive health, or if they are actually being seen by the wider public as a solution to the challenges faced by women accessing gynaecological cancer care too. So, Richard, I'm going to bring you in first here, if that's okay.

Sorry, I just need some clarification about the exact pathway you're referring to. I'm not overly familiar with—

Oh, right. Okay. I can come back to you, if that's easier.

Okay. Well, I'll bring in Sarah and Dr Aarti and then perhaps we can clarify what we're referring to, to bring Richard back in.

Okay.

Sarah or Dr Aarti, do you want to come in on this point?

I've got to echo what Richard said. I'm a little bit unclear as to what—

Which specific—

Yes—which pathway you're actually talking about.

Right, okay.

So, this was referring to the women's health hubs that are in place in England, which have been set up. I suppose, for the committee, we were wondering if they're working, if they're effective, and if this is something that we should be looking to do in Wales.

So, I'm just checking, Sarah: just for Richard's purpose, I think we're referring to the RCOG written report in terms of women's health hubs. Is that right, Sarah?

Yes.

Does that help, Richard?

Yes. Although I'm representing the college—I'm a member of the royal college, but I'm not part of the council or on any of those committees, so I'd have to ask the RCOG for clarification on that and get back to you at a later date.

That's absolutely fine, Richard.

That's absolutely fine. Okay, that's fine. What I'll do, then, is I'll move to a general question, which does follow on from this, I suppose. So, how concerned should we be that many women diagnosed with a gynaecological cancer in hospital, are often finding out that they have cancer after attending A&E? And what action is needed to reduce emergency presentations, and to improve the experience that patients with late-stage cancer symptoms have when they are admitted through A&E?

Richard.

I think a lot of work's been done in the last five years or so about the performance of cancer diagnostics and timeliness of diagnosis in relation to cancer outcomes, knowing that early diagnosis is the key to better outcomes. And the Danish model has been supported by Welsh Government, moving towards early diagnostic centres, because we know that any delay to diagnosis then translates to a worse outcome down the pathway, and so, sadly, attendance at A&E is a last resort for patients, and patients don't want to wait five hours in A&E; they just want to have an appointment with their GP in a timely manner and be referred on. So, sadly, A&E diagnosis is really a failure of our healthcare system in diagnosing cancer. It's acceptable, and obviously, people do; there will be patients coming into the pathway through A&E, but that shouldn't be as significant a number as it is, and it's a measure of accessing healthcare. And it is understood, it's being supported by Welsh Government. We've had several all-Wales seminars on that, and there are plans in health boards for diagnostic centres, and plans are being put in place, but unfortunately, the timelines are quite distant for those big projects, notwithstanding all the other issues of staffing them in Wales and things like that. But yes, I'm fully on board with what you're saying there.

Okay, thank you very much.

Sarah, I can see that Dr Aarti wants to come in as well.

The only thing I would add to that is that education, again, is key. We need to educate people. Unfortunately, there will always be a proportion of women who do turn up to A&E, purely because they never realised that their symptoms were significant enough, either to go to the GP, or they have tried to go to their GP and they haven't got that appointment. Like Richard said, it is a last-resort thing.

Thank you. Following up on that, though, what is your view on the way that acute oncology teams currently operate in Wales? How is that playing into this?

Sarah, did you want to come in? Sarah.

I would certainly say that they have made a huge impact. For myself, certainly as a specialist nurse, if any of our patients are having to be admitted to a local DGH, so district general hospital, in the past, it used to be a nightmare to try and find out what was happening. The relatives would be ringing us. We weren't able to get a true picture as to what was going on, plus you could never get through to the ward, and that would take us time. They've been amazing. So, now, if one of our patients is admitted, we will e-mail—the family let us know, or if they've rung our 24-hour treatment helpline number and we know they're going to be admitted locally, an e-mail goes off straight to that individual acute oncology team, letting them know who the patient is and where they're going to be admitted. They will then visit them, they will triage them, and then they will work with the team that are looking after them locally but feed back to us as well. So, it's certainly been a huge improvement for patients and their families, and we obviously have more of an idea of what is going on. They can be there as the AOS team, explaining to the doctors and nurses looking after them, 'Actually, this is what Velindre says'. But yes, I'm a huge fan.

Okay. That's really good to hear. Thank you very much, Sarah. Just my last question, which is again to you, Sarah. In your written evidence, you told us that you're calling for the Welsh Government to invest in rapid access diagnosis and treatment services for women with suspected gynaecological cancers, similar to the services provided to those with suspected breast cancer. I suppose we touched on this earlier on, because you said that you fed into the inquiry on this and that there was, then, a big push and educational campaign around seven years ago, but I suppose—. Do you think—? In your written evidence, you have made that comparison with breast cancer and the awareness around breast cancer, so what do you think—? If you could expand on that comparison, I suppose, and is there anything else that you think could make a difference?

We made the comparison because lots of patients have said, 'If I had a lump in my breast, I would be referred straight away to a rapid-access clinic within two weeks. When I got there I would be examined, I would have an ultrasound of my breast done. I would have a biopsy taken'—basically a one-stop shop, and then they would have their biopsy results in a timely manner. Now, that's probably the only comparison we can make, because with gynae, it would be absolutely wonderful if we could have a one-stop shop, but we've got different types, as we've said today, of gynaecological cancers. All have a different pathway in how the diagnosis should be made. I'd like to think that, in an ideal world, we could get there, but I don't think it would be as simple as a rapid-access breast clinic. But that's not to say that we shouldn't look at that.

Dr Aarti.

Just to again add to what Sarah is saying, although we can't do it for necessarily everything, there is a one-stop shop for most hospitals, especially for postmenopausal bleeding and endometrial cancers. So, a patient would come within those two weeks, hopefully, and they will get the ultrasound scan, they will get the biopsy taken. All those initial diagnostic tests will be done. It always goes again about capacity. As the numbers are increasing and as more people are referred in, have we actually improved our capacity enough to take on all these people who are being referred in? And I suspect that is one of the issues that we really, really need to work at.

Thank you. 

Yes, thank you very much, because, Richard, as you said, it's 1,600 to over 4,000. Yes. Exactly. Okay. That's very helpful, all of you. Richard, did you want to come back in, as well?

It was just a brief comment, just for the record, about the women's health hubs. Google's a wonderful thing, but it's sad in a way. So, this is specialising and centralising care and primary care to link expertise into centres so that women can access more easily secondary care advice and sexual health. It's a classic example where it's been an English-only project, with funding from the UK Government. So, that's why, Sarah, Aarti and myself haven't been aware of that. But, looking at it, pilot sites have been well received, and good outcomes, and the RCOG made a statement last month supporting further investment of the £25 million into expanding it. So, the RCOG is supportive of it. But, clearly, the message from me would be why England-only. Why can't we expand this into Wales as pilot sites? There are so many examples where Wales hasn't been able to follow England NHS, and we've got lots of examples of that in gynae cancer, sadly. 

That's very helpful. Thank you very much, Richard, and thank you, all. Thank you, Chair. 

Thank you, Sarah. Richard, you posed the question of why Wales hasn't been able to do the same. What's your analysis and explanation, if you have one?

I don't know whether we—. It's often, unfortunately for example—. There's an example with the English ovarian cancer audit. The British Gynaecological Cancer Society supported an audit into looking at outcomes of ovarian cancer in England, and I was the Welsh representative for the BGCS at the time, and we asked to be included, but, unfortunately, our data systems didn't align, so the data couldn't be pulled in an automated way as it was being in England. We were very happy to link into that, but we failed for several years and only recently have been able to secure funding to have our own audit, which will, in fact, probably end up being better than the automated English audit, but it's taken several years to do so. 

We just don't have this seamless linking between the two NHSs, with different IT systems often being a large part of ease of comparators, really. We have the same for logging cancers. The cancer network information system Cymru that we use in Wales hasn't been able to be updated for several years, and we can't even update the staging on that to accurately document staging, because the staging's changed. The IT system is archaic, and we can't make any more amendments without the risk of the system wholly crashing. We are waiting for a new one, and there is a plan in place for a new CaNISC, but, again, the date's getting pushed back for that. 

Okay, that's interesting. Thank you, Richard. Jack Sargeant. 

Thank you, Chair. If we can move on to the workforce, and the cancer workforce in particular, we've spoken a little bit already, as we often do in our committee, about the workforce. I think we should note our thanks to the workforce for all they do, and we understand the pressures they are under. Dr Sharma, we spoke in response to Gareth about the challenges currently with the workforce. If I can focus, perhaps, with the RCN first, Sarah, on specialist nurses, specialist cancer nurses, I can pre-empt an answer to the question of are there enough nurses at the moment. I think the answer would be 'no'. Correct me if I'm wrong, but I see you're agreeing with that. Looking to the future, then, I wonder if there's any projected clinical need where we think we may be, and, given that projected need, with the current plans for training, for example, and the current plans for retention of staff and recruitment of staff, do we have our ducks in a row, if you like? Are we where we need to be or not? I'll let you expand, perhaps, on why we're not. 

No. We don't even have a full list of how many gynae cancer specialist nurses there are in Wales. We certainly, for our submission, couldn't find how many. Macmillan have also done some work on this, and we know that—. I'm included in this; I've been a gynae cancer specialist nurse for 29 years, and worked within oncology for 33, so I'm now in the latter part of my career. So, what is concerning and what we've tried to highlight in our submission is that, in the next five to eight years, the majority of the workforce—the gynae cancer specialist nurses—will have retired. And what have we got coming in? We've got a huge recruitment and retention problem in nursing anyway at the moment, and once you've got a qualified band 5 nurse, there aren't supported educational pathways to allow those nurses to develop into cancer specialist nurses. So, I am worried for the future. I've got expertise in gynae cancers because I've been doing it a very long time. If we don't look at recruitment and funding for succession planning, all your expertise will be gone in a few years' time, so rather than the patients having an expert as their key worker, they will have a novice.

The troubling part of all of that—and, Richard, I'll perhaps bring you in in a second—and it was quite troubling, all of it, was the fact that we don't know how many nurses we have. So, you are a specialist cancer nurse, but if you retire tomorrow, are you the only one? I know that's perhaps not the best representation of the fact, but how could we have a future projection of clinical need? We don't know many cancer nurses—. It seems to me very strange, Chair. It's not for the RCN and Macmillan to have that answer, I don't think, but it's perhaps for NHS Wales to understand how many there should be.

Why don't we know? Why don't we know?

I think because NHS Wales hasn't collated that data.

Do the individual health boards know?

I would hope they do.

So, surely, it's not that hard to—. We've had this problem before.

We've had this conversation before. It doesn't surprise me anymore, but it maybe stuns me in a way that we don't collect this because it doesn't seem difficult data to collect, really, if individual health boards—. We'll need to, perhaps, make more of a statement than we are because we're asking this question over and over again to different people, and it's seemingly just coming back to the same—

Jack, I think Richard wanted to come in on this.

Sorry. Richard.

I just wanted to give a slightly positive story from Betsi, which are often few and far. We've often had the same situation, as Sarah explained, where experienced staff retire and we're not able to recruit. There's a barrier, actually, put in place to recruit until that person has actually left the building, which has often left a three- or six-month, or even longer delay in recruitment. With our last specialist nurse to retire, fortuitously we managed to push through the fact that we needed to have some training time, and we were able to recruit to post with a four-month handover. That worked very successfully, and it allowed the senior nurse to retire knowing that her practice was in safe hands, and the new nurse coming in was not fresh and was fully aware of the pathways and the work. So, I think that's the first time we've been able to achieve that in the 12 years that I've been in Betsi, but I hope, moving forward, we can say, 'Well, look, we've done this in the past. We need to replicate that.' I'd encourage other health boards to try and push for that, because it is, obviously, possible but often not done, sadly.

Thank you for that, Chair and Richard. That is positive news. I'm trying to think of a—. I don't want to dampen positive news, especially around Betsi, but that's because, perhaps, the specialist nurse has gone out of her way or his way to give advance notice and make this request for training someone, where NHS Wales perhaps or the health boards themselves should be doing this; it shouldn't be down to the nurse, taking away from their time and role, to go and pursue this. Dr Sharma.

Very similar to what Richard has said, we've done exactly the same at the university hospital here, and we had two nurses who were trained. One of them went on and is doing a specialist nurse role with you in Velindre, and one of them has stayed back in the Heath to be a specialist. But, again, it was with somebody retiring and having that thinking forward that, 'Well, actually, when I leave, this space needs to be filled in'. But we shouldn't—. But the funding—. It was so hard to get that funded for a year for those two people. It was a constant fight. That shouldn't have happened, because it does dampen the experience a little bit.

Again, I'm perhaps spending too much time on this, but having that data available helps that argument of why we need—. I will move on, Chair, to perhaps my final question, then: is that the same—we've talked about nurses here—for consultants, for the wider team, surgeons?

Yes.

'Yes' is the—

'Yes' is definitely the answer. I'm sure Richard will want to say this as well, because I know they've just advertised a post for north Wales. We have got similar sorts of issues, but perhaps not as difficult as them. But that is probably not just a Wales problem; that is probably a UK-wide problem. Because we know we have—. We were made aware that there were 12 gynae oncology posts that were coming out—consultant posts—overall in the UK, and we know that there are only four people finishing their training. So, how do you use four people to fill 12 posts? It's the same sort of issue in Wales, but this is unfortunately a UK-wide issue. And I think the royal college had brought out a document not so long ago, which we had to contribute to, just giving the Welsh representation on that, where there does need to be more input into that as well, training more people to do a specialist job.

Thank you for that. We really must look at planning of workforce as a committee. We keep coming back to this.

I want to add one more thing to it. At the moment, in all of Wales, we have just one fellow who is training to be the next Richard or me, and we have at least three tertiary centres that can potentially provide that kind of training.

Thank you.

Thank you, Dr Aarti. If I can come on to another subject area, cancer waiting times in Wales are currently the worst-performing that they ever have been, particularly, I suppose, for gynae cancers, so why is this? Richard, and I'll come to you then, Dr Aarti.

I think it's multifactorial and we could talk for hours about this. I think that the change in the single cancer pathway has hit us harder than other specialties, potentially, so that's one factor. In the COVID situation, we carried on working in gynae cancer throughout COVID, but what we've seen in the last year or so, post COVID, is this real boom in urgent suspected cancer referrals, which is the people suspected of having a cancer. I'm talking about our numbers going up, but this upshot is huge in the last 18 months. And that's partly because GPs are struggling to get routine or urgent patients seen in secondary care, because of very long waits of over a year for a secondary care appointment. And so what GPs are having to do is they're having to send patients in as a suspected cancer referral, and they're wording the referral letters so that we have to see them. And we're also being asked not to downgrade many referrals, and so, unfortunately, the number of USC referrals has really bloomed, and then our hit rate of finding those cancers in those is very low. So, out of 100 per cent of referrals, our cancer rate is about 5 per cent. So, we have to triage 95 per cent of normal patients who don't have cancer to find the 5 per cent who do, so that's putting a lot of pressure on the start of the pathway, those initial two weeks. And we all know that if you breach in that first two weeks, if it's taken three or three and a half weeks to see a patient because of capacity, then you just can't catch up on the 5 per cent of patients who do have a cancer. There's also the diagnostics, availability of scans, and alignment of scans to clinic appointment for one-stop clinics—huge other factors. But I just wanted to get those things across. I'm sure Dr Sharma and Sarah will come in on other factors as well.

I suppose, as I perhaps bring in the other witnesses as well on this question: what are the priority areas? Is it in terms of infrastructure or service development? What is needed to overcome the performance, for the reasons outlined by Richard?

It is a difficult one, because, again, it goes down to capacity. Suddenly, we are being sent in 100 patients to find that five. I can feel for the GPs, because they're obviously trying to get their patients seen, and if they're having to wait—. This morning, one of my colleagues told me about one of his endometriosis patients who's now waiting for 104 weeks—that is when they will get seen. So, understandably, from primary care, if they are even slightly worried about a patient, they will want to send through the USC or UCR pathway, on the single cancer pathway. But this not just stresses out the problem that they are facing, it is the other side; not only are we having to see these patients, to downgrade or not downgrade, but, for example, a patient will have a biopsy taken because they have been sent on the single cancer pathway, that will then stress out pathology, because they are going to have to work in that same sort of capacity, because they're trying to exclude a cancer. If something then turns up, or doesn't turn up, but everything is being done at the same time, so whether it's diagnostics and pathology or in radiology, extra scans, extra—. There just isn't the staff to actually try and take care of so much that is coming in at the moment. There just is not that staff. There is enough evidence there to say that there is a shortage of pathologists, there's a shortage of radiologists; this is nationwide, but we are in a very difficult situation with that in Wales as well. And unless there is that influx of funding, the improvement of infrastructure, and the people who are going to provide that care, there isn't a straightforward answer.

And just summarising what you're saying: it's not one issue, it's several issues, as you've identified, and Sarah's nodding, and Richard's nodding as well to that. Sarah, did you want to come in at all on this?

No, I think both Richard and Aarti have summed it up—it's multifactorial.

Okay. This is an issue that we'll explore further in other sessions, no doubt, and with the Minister. And I suppose there's an issue around the provision of some new treatments that have taken longer to introduce in Wales, compared to some other parts of the UK, and I'm thinking of the drug Avastin. Why do you think this is the case?

Well, Avastin was first given its licence many, many years ago, but in 2014, in England, if you were a patient who had a metastatic cervical cancer, you were able to access Avastin, or the name that we call it—we don't use 'Avastin' because that's its trade name—bevacizumab. So, we are now nine years behind, and we've only just been able to give this drug to our metastatic cervical patients in the last six months, because the funding wasn't available.

So, why is that? Is that just because the funding's not available? But the funding was available in other parts of the UK.

Yes. So—

Nine years?

Nine years. And this isn't the first time. I've worked in gynae oncology for a very long time, and this actually happened 24 years ago, when they introduced one of the chemotherapy drugs that we use, called paclitaxel, or Taxol for short. And if you lived in Gwent, 24 years ago, there was funding available for paclitaxel; if you lived in Cardiff, there wasn't. But thankfully, that's not happened, but it has happened for bevacizumab, or Avastin. And also, there's another drug as well, which is one of the immunotherapy-type drugs, pembro. Pembrolizumab is also a drug that's been available for metastatic cervical cancer patients in England, and we're hopefully going to have the final sign-off within the next six to eight weeks, to allow our patients access to it, but we always seem to be on the back foot in Wales.

Why is that?

Because of funding. As a clinical nurse specialist, I don't understand how all the funding works, but we never seem to get the same access in the same timely manner to drugs that patients in England can have. We're always way behind.

Okay. I'll bring Dr Aarti in in a second, but just to give Richard an advanced question as well—you can consider this—I'm trying to understand, if the Minister was here, what would be her response. What's the Welsh Government's response to why it takes nine years additional to supply funding to the Welsh NHS to supply a drug that is supplied to the rest of the UK? I'm trying to understand what the Minister's response or the Welsh Government's response would be to that. Dr Aarti.

It's difficult to know what their response would be, but I know what the response should be. This kind of disparity should not happen. We have had patients who, actually, if they have a relative or somebody in England, have gone and made that their postcode to achieve that treatment.

I know. I've got cases of that happening myself.

We have had clinicians, like Richard and myself, or Louise Hanna—all of us—who are spending time filling out these IPFR forms to get funding for these patients to be able to get the drug. We've done that so many times for so many patients, and we don't know whether it will be approved or not, so we may make patients wait for two to four weeks just to find out whether it will be approved or not. There shouldn't be a disparity. I don't know what his response—

Her response.

—would be, but I know what it should be. There shouldn't be any differentiation.

Yes. It's not for our committee to try and work out what the Government's response would be, but I'm just trying to understand the Government's response, if they've got priorities in other areas and they're focusing on something else. That, no doubt, will be their response.

I've also had patients that sadly have had to fund the bevacizumab or Avastin themselves, and because the drug is based on weight, body weight, obviously the heavier you are the more costly it is. We're talking a few thousand pounds every three weeks for 18 months. So, it's—

An equality issue, further, as well. Did you want to come in on this question at all, Richard?

No, just to echo what Dr Sharma has said. The policy is that they make changes they need, so NHS England will have the evidence worldwide to say that this drug is effective and then it gets approved in England, often, and then in Wales we always seem to have to go through this individual patient funding request, IPFR, or through the WHSSC service, the Welsh Health Specialised Services Committee—

Yes. I know WHSSC, yes.

—to get funding, and it never seems to be seamless, and I don't know why that transition takes time. As Sarah said, that time can be ridiculous at times.

Is there a different process? Can you explain the different process between England and Wales in terms of the process that has to be gone through to have a drug approved?

Drugs come through—. The evidence now comes through NICE approval—

That's right.

—and they look at quality of life years gained from a certain cancer drug, so cost-effectiveness of a drug, and then once it gets approved then—. Because, obviously, the commissioning of the service is different in England to Wales. We have this national funded health, whereas in each area of England we've got commissioned services, and I don't know if that's the difference. I've worked in Wales now for the last 17 years, so I haven't been in NHS England since a lot of these changes have come in, and it's a definite different way of working, when you talk to colleagues over the border.

Okay. I think it's something that as a committee we need to understand in terms of the—. Because the NICE guidance is UK wide and is adopted by all four of the NHS bodies across the UK, but then it's the funding arrangements that sit under that that are different for us. Well, that's my understanding, but we need to perhaps understand and dig into that a little bit more.

I can see Gareth and Jack both want to come in. Was it on this particular point as well?

Yes, it was just on the NICE guidelines. The drugs that you mentioned that have been a challenge in Wales, then, are they prescribed in England under NICE guidelines? Like Russ mentioned, they cover England, Scotland, Wales and Northern Ireland.

Yes.

Okay. Because, in my mind—I'm just sort of thinking out loud—it seems quite a serious issue to me if there are NICE guidelines and they're unable to be followed because of potential funding arrangements. That's quite a serious issue—in my mind, anyway.

No, I totally agree, and it's heartbreaking for some of our patients and for the clinicians that, when a patient comes in and they're well-read, they've been on various websites, they know about these drugs, and they come to clinic and we explain what their treatment's going to be, and they say, 'Well, I've got metastatic cervical cancer, I've looked on Jo's Trust'—which is the national support group for cervical cancer—'you've told me I'm going to have carboplatin and paclitaxel, combination chemo; where's my bevacizumab? Why can't I have that?'

Are there drugs in Wales that are available that are not available in other parts of the UK? 

I doubt.

Okay. Jack.

Yes, I'm trying to get clarity on this. The drug's been available for nine years, approved and funded, in NHS England. And for loads of different reasons, the process between NHS England and NHS Wales—. I think we've seen it before, Chair, with cystic fibrosis drugs, for example, where a new drug came out, Wales was a little bit behind, but then a year later another drug came out, and actually Wales was ahead. So, there's the approval process to go through, even if it is NICE—if I understand that correctly—through the different NHS bodies. But it seems to me that it has been approved at the same time, or relatively the same time; the funding's been available in NHS England; in NHS Wales, it hasn't been available in that way, but you can go and then fill a form out—

IPFR, yes.

—to go and access funding from NHS Wales, essentially. So, it would be interesting to see how many patients have had—

I can see Richard wants to come in, but I've just been reminded as well that we've got the All Wales Medicines Strategy Group coming in to give evidence on 14 June, so that will help us in this regard. Richard, did you want to come in?

Just briefly to say that, just because we fill in those forms, they're not always accepted.

Yes, and I think that's my point that I'm trying to get across. It would be interesting to see how many forms have been filled out, how many have been accepted and rejected, just for—. Because if a number have been accepted, it's coming out of the budget.

Sarah. 

Just to give you a little bit more information: so, it's nine years in England; it was accepted in Scotland, I think, maybe about seven years ago. So, again, you know—

There's that patch of acceptance that is there, but the funding—

We can resume this line of questioning on 14 June. Thank you. We're a little bit short of time, but, Sarah Murphy, did you want to come back in on some final questions?

Yes, thank you, Chair. So, I just wanted to ask—. What was coming through a lot in the written evidence was that data on gynaecological cancers is currently pooled together, so we're going to be asking questions to our next panel about this. So, it would be brilliant to hear from you what might be the benefit of disaggregating this data by tumour site. So, how could that improve clinical practice and patient outcomes, in your opinions, please? Richard, did you want to come in first?

Yes, data is power, isn't it? It's really hard to have discussions with any providers if you don't know the numbers. I'm the lead in Betsi, and I've been answering questions—. I think one of the good things about gynae performance deteriorating is that it's now giving us a way of speaking; when we're mid-performing or performing well, people didn't look at gynae and they didn't help gynae, and the good thing is that gynae deteriorating is now getting things like this discussion up and running, and our health board managers are now looking. So, I think that's a really important thing. But data allows us to—. We didn't know how many USC referrals we were getting until people looked, and, therefore, you don't know how many clinics you need to put on per week. Until you get those sorts of figures, you don't know whether it's your workforce not working hard enough, or whether it's, actually, we just need twice as many clinics, twice as many nurses, twice as many doctors. So, we have to have that data.

As I say, not being able to even document the correct stage for a patient in stage 1A1, 1A2 or 1C3, not being able to have those in an up-to-date fashion means we don't have the outcomes to compare with international data to see are we doing well in Wales, are we on par or are we actually struggling. So, we just need that data.

Thank you. So, just to confirm, then, gynaecological cancers would be all lumped together, then, in this data?

No, it's not quite—[Inaudible.] On our cancer database, we have all the cancers listed separately, so we stage them properly as ovarian cancer or womb cancer, but some of them have had up-to-date staging done that isn't reflected. So, some of the 1As and 1Bs have changed, and we can't actually accurately document that and, therefore, analyse the data.

But then, I think what we referred to in our written evidence is that—. Dr Sharma mentioned earlier we have one-stop clinics for postmenopausal bleeding for womb cancer. We have suspected cancer clinics for the other types of cancers. Some will come through colposcopy clinics, the investigation of an abnormal smear. So, unless you have all of that data well logged, then it's hard to really map out the service and, therefore, against our optimal pathways. We haven't talked about those, but we've got standardised national pathways in Wales that we've all agreed on for each tumour site, so that's all good. It's just our performance against those that we need to look at.

Thank you very much. Is there anybody else who wanted to come in on this, as well?

Dr Aarti.

Just that until we have that information, we don't know where that progress is going to be. What are our pinch points? Where is the problem that we can solve? It's all a problem at the moment, but if it's specific, then we can work towards it.

And the data is absolutely crucial to this is what you're saying.

Absolutely.

Okay. If I can just ask a final question, then. Richard, you mentioned this earlier on, when you said there's a conference happening at the moment. Is there enough being done to capitalise on research and innovation? What more can we be asking for, please?

That was to Richard, I think. Did you hear that question all right, Richard?

I did. Academic medicine doesn't form a large part of my job, but colleagues in Cardiff who I have worked for—. It was sad to see our large human papillomavirus laboratory lose its funding in Cardiff, which supported a couple of our gynaecological cancer surgeons, and one left the country and is now working in New Zealand. We've lost one of our great consultants through lack of funding of research in Wales, so that is disappointing.

We have recently set up our multidisciplinary research group in gynae cancer, joining the three centres of Cardiff, Swansea and north Wales, so work's being done. We've got some exciting things: our robotic service that we've introduced through Cardiff and north Wales, with me and Aarti, it's all good stuff. Those sorts of things are really exciting to be part of and to see innovation happening, albeit maybe up to 20 years behind England with regard to robotics. So, I think funding for research has been lacking over the last decade, and so we don't have a lot of in-house projects. We're relying on being part of English projects. But, again, in Cardiff, we are seeing some clinical trials coming out of Cardiff, which is really exciting, and we're hoping to be part of those, as well. I think research funding is pretty critical.

Thank you very much. Thank you, Chair.

Thank you, Sarah. We're out of time, but if there's anything crucial that you think we've not asked you about, or that you've not had an opportunity to say something, or if we've missed something, then, by all means, just indicate now. No.

I don't think so.

You're happy that you've told us everything you need to help us in terms of this inquiry. Thank you for that. This is the second session, so we've got more sessions to come, but, by all means, if you do have a chance to watch them and you think of anything else to add to what you've said, then please drop us a note. We'll send you a copy of the transcript from this morning's meeting, so just review that, particularly you, Richard, because it dropped out occasionally. There was a bit of drop-out, so I just want to make sure we captured what you said correctly, as well. Thank you for your time this morning. I know that you're all busy people, so we really appreciate you coming in to committee this morning. Diolch yn fawr iawn.

We'll take a break, and we'll be back at 1.45 p.m.

Welcome back to the Health and Social Care Committee. We move to item 7 in regard to our inquiry on gynaecological cancers, and we've got oral evidence. We've had two earlier sessions today, and this is our third and last panel of today. I would like to welcome Dr Louise Hanna who's with us, and we've got another witness that we know—he's just giving his apologies—is a little bit late and will be joining us shortly. Dr Louise, would you just like to introduce yourself for the record?

Yes, thank you. My name is Louise Hanna. I'm a consultant clinical oncologist in Velindre Cancer Centre, and I'm representing the Wales Cancer Network gynaecological cancer site group today.

Thank you ever so much for being with us. I suppose one question is: do you think that there's equity of access to diagnostics and treatment in regard to gynaecological cancers across Wales? Do you think there's an issue of equality depending on where people live?

Yes. I don't think there's equity of access at the moment. And we do know from the single cancer pathway information that we can get via health boards—and we do know that there is variation among the health boards—it does vary from time to time. Sometimes some health boards are doing better, sometimes they're not doing so well, but there is variation among the health boards, and we also know that there's variation within health boards as well between sites within the health boards.

I suppose, as a general opening question, recognising that variation, is it ever possible to make sure that we have equality across Wales, or is that perhaps unrealistic? Is it a case of depending on where you live and what your circumstances are?

Well, I think, just to unpick about gynaecological cancer, the gynaecological cancer—. I should as well say that we're talking about gynaecological cancer, so that predominantly affects women, but it also affects people who were assigned female at birth, so it includes non-binary and trans men as well who've got gynaecological organs. But if we just unpick the gynaecological cancer sites, there are five different sites. So, we've got ovarian cancer, endometrial cancer, cervical cancer, vaginal cancer and vulval cancer. Gynaecological cancers are fairly uncommon compared with other cancer sites. So, basically, you've got an uncommon cancer, you've got a small team, patients might present anywhere in Wales, and you need to build resilience within the workforce, really. Because you've got small teams, you might have single points of failure within those pathways. Patients are presenting with multiple different symptoms. They might have what is traditionally regarded as a gynaecological symptom, such as bleeding or pelvic pain, but patients also present with other symptoms that are not traditionally thought of as being gynaecological, such as bowel symptoms, urinary symptoms, indigestion, bloating—that kind of thing. You've got five different cancer sites and, at the moment, we've got four optimal cancer pathways. The patients are presenting to the cancer units, and then they might need to be then referred onto the cancer centre for their treatment. Because it's an uncommon cancer, most of the treatments are done in cancer centres.

So, you've got, potentially, a lack of resilience within teams, within local teams, and a lack of facilities. I think the question was about, 'Can you actually provide equity?', so apologies for that preamble, but basically you need to be looking at the whole pathway and working on a regional basis in order to provide equity. At the moment, the funding and the organisation and the responsibility lies with the health board, but the patients might be treated in a different health board in the cancer centre, and so you need some kind of joined-up regional working. You need working across different sites to provide resilience—I know I keep using that word—and cross-cover. If you've got single points of failure, if you've got one person who's responsible for a particular part of the pathway, then if that person is away then that pathway stops at that point until they return.

Okay. It could be that some members want to come in with some more specifics following that answer, Dr Louise. I'll come back to you in a moment. I'll give you advance notice. I'll come back to Professor Tom Crosby in a moment, but I'll give you advance notice—my next question to you was going to be around how Wales compares to the rest of the UK in terms of providing the best care and expertise for women diagnosed with a gynaecological cancer, and I suppose my question in that regard is that you've got some big specialist centres in other parts of the UK that we've not got, perhaps, in the same way in Wales, and what we can do and what that means for Wales and what we can do in terms of is it reasonable that we can expect those same services in Wales. I'll leave that with you for a moment.

I just wanted to bring in Professor Tom Crosby. Thank you for joining us today, Professor Tom. Can I just check, can you hear me okay and hear the meeting okay? We can't hear you. Don't worry at all. Is there a button that you can press to unmute, at all, that you can see on your screen? I'm just checking the problem is not on our end. I'm just going to check with our clerking team, making sure there are no issues at our end, but just have a check on your settings, if you can, Professor Tom. What we'll do, Professor Crosby, is we'll just take you out into the breakout room, we'll try and resolve the issue, and then we'll bring you back into the meeting. There we are. Thank you.

Dr Louise, I'd given you a little bit of advance notice on my next question, so over to you.

I think it's fair to say that all UK nations will be struggling with this. I have seen specific data from certain areas that does confirm that. I can't talk about every single centre that there is in the UK, but I think it is fair to say that there are things that can be done in terms of, perhaps, streamlining the service. One thing that we really need to look at is nailing the one-stop initial rapid access service for patients. If you talk about postmenopausal bleeding, which is a classic sign of endometrial cancer, it's one where, after the menopause, if women experience bleeding, they know that's abnormal, they go rapidly to their GP, and they're rapidly referred on. You could set up a rapid access postmenopausal bleeding clinic, where you're talking about patients being seen, assessed; they might be having an ultrasound and a biopsy all on the same day. There are examples of those in Wales, but not everywhere.

I suppose one of the points of the question was whether we have the expertise and technologies and the facilities in Wales to attract the kind of world-class specialists that we need. 

Okay. So, you're talking about recruitment and retention.

Attracting people, yes, but attracting specialists in the first place to come and work in Wales. 

I think Wales, in many ways, is an attractive place to work. Certainly, the cancer centre that I work in is very popular with recruitment. Having said that, we do have capacity issues. We want to expand more, and we are having difficulty doing that. In terms of—

The question is, I suppose, whether not having the kind of facilities available that might be available elsewhere in the UK means there's an issue in terms of attracting colleagues to come and work in Wales. 

Yes, certainly. You're talking about new innovations and whether we've got the infrastructure for the research and the innovation and how we fast we are at implementing new things. Obviously, there are some treatments where we have lagged behind the rest of the UK in terms of implementing them. I'm talking about new cancer drugs, robotic surgery, that kind of thing. In terms of research and innovation, we've now got the multidisciplinary research group in Wales for gynaecological cancer, which is taking things forward, but there's an awful lot more that we could do to actually make it more attractive and to retain people. So, it's recruitment and retention as well, isn't it? I'm not sure if that answers the question. 

That's fine. Thank you, Dr Louise. Professor Tom, can you hear me, and can we hear you?

I hope so. Can you hear me now?

I can hear you, indeed. Thanks. 

I'm being asked to join the breakout room, if somebody somewhere can just—

Okay. We'll make sure we get rid of that, because we want you to stay in this meeting now. Thanks for being with us, Tom. 

Sorry, I don't know what happened before. And generally this afternoon, apologies for being late; there was a clinical meeting I had to attend beforehand.

Dr Hanna has, I think, explained really articulately what some of the challenges are in the system. Aligned to previous evidence that I've given, we do have a major problem at the moment with demand generally outstripping capacity in the system. And this is true across the pathway for gynaecological cancers. I think your question about, then, how that impacts on recruitment and retention is really valid, because there is the potential for things to spiral downwards rather than upwards. Where a service is under pressure, where we're not able to offer innovative state-of-the-art treatment, it is more difficult to recruit and retain staff within cancer services. Dr Hanna can speak specifically about gynaecological cancer. I think she did mention, there, robotic surgery. I think that is a very attractive proposal that's being spread across Wales, and it's quite innovative for gynaecological cancers. Specialist centres like Velindre are quite fortunate in terms of being able to attract people to work there, but that is not the case across Wales, where there are huge challenges at the moment in terms of—

Thank you. Some of the Members will have some specific questions to dive into. There's one question I did just want to check with you, Professor Crosby. You're a member of the cancer network that published the cancer improvement plan for the NHS in Wales. There's one area I was trying to get to grips with. The Minister has produced her quality statement, the cancer improvement plan is the 'how it's going to be delivered', and I'm aware that that plan is for health boards to take forward and deliver. But I'm just asking your view on how there can be scrutiny of that plan. How can we ensure and how is the Welsh Government ensuring that what's in the cancer improvement plan is actually being delivered? I'd like to get your sense on that. 

That is a very good question. I've got to be careful not to do myself out of a job or something afterwards, but I think there is a real issue of accountability at the moment. We know what need to do, but there is a little bit of a gap. We've just established the NHS executive, which has come into force from 1 April. That has oversight of delivery of healthcare services across organisations in Wales. I think the Welsh Government's response will be that the health boards have a lot of funding and all the funding that they require. But in terms of accountability and holding to account, I think there are issues that we need to improve on. What I would say is that for lower gastrointestinal cancer and for gynaecological cancers and urology cancers, there is a specific focus at the moment. We are discussing not just how we hold organisations to account, but also how we support them in terms of sharing best practices. We know that there's lots of variation between organisations. Sometimes those organisations are quite close together, sometime just miles apart— 

Sorry, I hope you don't mind me interrupting. I suppose the main question I'm asking is where's accountability for improving cancer patient outcomes. Where does the accountability lie in your view?

Finally, I think accountability has to lie with the Welsh Government. They're the only body that oversee the funding and co-ordination of health services in Wales.

What I'm trying to get at, I suppose, and understand, is that the cancer improvement plan is the 'how we're delivering', and health boards are responsible for delivering that plan. I'm just conscious as a committee that the Minister doesn't say to us, 'Well, I'm not really accountable—it's the health boards that are delivering the plan, not me.' I'm just trying to make sure that we're clear on who ultimately is responsible for improving patient outcomes and what the mechanisms are to ensure that the Minister is accountable for those health boards in delivering the improvement plan.

I hope you don't mind if I call you Russell, but I lost your connection—[Inaudible.]

It looks like we're losing your connection as well. That's fine—

Can you hear me now?

I can hear you now, so I'll just briefly repeat the question.

I heard the question.

There we are. You go ahead, then. 

I hope you don't mind me calling you Russell—

Not at all.

I think the ultimate responsibility in governance and accountability has to lie with Welsh Government oversight. You can charge that responsibility through Judith Paget and the director general et cetera in terms of oversight of the health boards, and we will work with the health boards to report and share best practice, particularly across organisational boundaries, some of which show significant variation. We're having very detailed conversations about how we do that. But ultimately, the only oversight body that has the authority, the mandate and the funding, I'm afraid, is the Welsh Government.

Thank you. I'm just going to ask you both for permission, Dr Hanna and Professor Crosby—because we're really short of time and we've got more questions to get through than we've got time for, do you both mind if we politely interrupt you if you're not quite getting to the point?

Not at all.

That's fine. 

Thank you. I really appreciate that. Gareth Davies.

Thank you very much, Chair. Good afternoon and thank you for joining us today. Cancer waiting times in Wales are currently the worst they have been. Performance is very poor for gynaecological cancers, with compliance significantly below the 70 per cent single cancer pathway target, and the lowest of all cancers reported. Why do you think this is? Can I ask that to you both individually, for an individual response?

A lot of it is to do with the previous answer that I gave you about the complexity, the number of pathways, the fact that gynaecological cancer is uncommon. You've got multiple complex pathways stretching over multiple health boards, so it's very, very complex. I think there are capacity issues. We know that we've got a shortage of radiologists, we've got a shortage of pathologists, so you've got delays in those systems. Those are across all tumour sites, but obviously gynae cancer is affected by that. You've got fragility within the workforce—I mentioned that before—and you've got variation as well. In terms of how to manage it, we need to have a joined-up pathway, because at the moment, as I said, things rest with the health board that the patient lives in. Sometimes, the pathology has to physically be sent from one health board to another, and it can get delayed. In terms of the shortage of radiologists, recently we had patients who can't be discussed in our multidisciplinary meeting because of a lack of radiology time. We've got pressures on theatre space, we've got pressures on radiotherapy, on chemotherapy. We've got services—I spoke to people before coming here—that were lost during COVID and haven't been reinstated. I would've thought an immediate action would be to survey, within Wales, what services were lost due to COVID and to reinstate those immediately, because we need to go beyond where we were before COVID.

Do we know what those services are?

I don't particularly want to give examples, because I spoke to people a few weeks ago and things might have changed. But I've spoken to people and I've got example of those. 

You don't feel able to share them today. Just a couple of examples so we can get an idea of what—

A postmenopausal bleeding clinic that was lost during COVID hasn't been reinstated. Theatre capacity was lost during COVID and hasn't been reinstated, according to my conversations a few weeks ago.

Why is that?

I don't know why. Is it something to do with the fact that it's women's cancers? You know, you see on the news that women have had pain for 15 years before they're diagnosed with endometrial cancer. Is it something to do with women's cancers? I don't know. For breast cancer, the waiting times are much better, so it's not specifically women, is it, but is it something to do with the fact that it's women's cancers? Does that make gynaecological cancer more vulnerable, when you've got the complex pathways, when you've got multiple health boards, et cetera—are they more vulnerable to that? It's something to do with the way the services are set up.

Any further questions, Gareth, or do you want me to bring in Professor Crosby?

In terms of priority areas for improving the situation, where would you see that? Would you see that in some of those services you mentioned, or is it more on a global scale, in terms of what I mentioned in the first question about cancer waiting times in Wales being the worst they've ever been? What infrastructure and methods can we put in place in order to improve that? Are they in those specific services or is it more of a holistic approach?

Do you want me to bring in Professor Crosby at this point?

If you want to.

Thank you. It's a great question. I will try to be really brief, but it is obviously a complicated answer. It's not specific to gynaecological cancers; we can look at breast cancer and prostate cancer as well, for women and men. Demand is outstripping capacity; we know that. The problem with capacity is workforce, and that's not easy to fix overnight. But there are things we can do better at the moment with what we have. We've seen in south-east Wales and south-west Wales, between organisations that are just 10 to 15 miles apart, there's 1.5 to twofold variation in performance across the pathway. So, it's how do we hold accountability to organisations, but also to have responsibility to reduce inequalities across the pathway, and we don't have that at the moment. There are active conversations ongoing about how we have that accountability, but at the moment, the only accountability mechanism is between Welsh Government and health boards, which are responsible for the outcomes for their resident population—not for Cardiff to be responsible for improving the outcomes for people in Blaenau Gwent, or Merthyr. So, there isn't that accountability or funding mechanism to reduce those inequalities. So, anything, I think, that the Health and Social Care Committee can do to support reducing those inequalities would be welcome. And I just agree that these waiting times are unacceptably poor.

I think Dr Hanna wanted to come in.

Yes. So, we haven't talked about data, but you may be aware—

We're going to.

Okay. So, a lack of—

Hold fire. If it's about data, hold fire, because we've got some specific questions. Is that all right? Do you mind if—?

No, that's fine. But one of the things that we can concentrate on are the one-stop clinics—the pathways. We've got so many pathways within gynaecological cancer, so how can we get the one-stop clinics, where you've got assessment, ultrasound, biopsy, hysteroscopy all on the same day? You've got all those things, so you're kick-starting the pathway. That's important. I think that, in terms of pathology, I mentioned that sometimes, biopsies are physically sent from one place to another; I know that digital pathology is being explored, so how can that help us in terms of getting the biopsies reviewed more quickly? Also, joined-up working, where the money follows the patient—so, some kind of regional commissioning, something like that; immediately reinstating services lost to COVID; and we'll talk about data later, but that is absolutely key.

Yes. Have you finished your line of questions, Gareth?

If I may, just have a quick question and a quick answer, I asked the previous witnesses, earlier on today, inviting views on the suggestion made by Cancer Research UK that self-referral should be available for some types of gynaecological cancer. Do you think that's a right approach? Obviously, it's deemed by quite a prominent cancer charity that that should be the case. Do you think that's realistic in the current climate?

On paper, it seems like a really wonderful idea. It would need to be thought through. For one thing, we know that awareness of symptoms among patients could be improved, and so, some patients might not be aware that they would need to self-refer. Also, we do have significant capacity issues across the board within gynaecological cancer, and so, a lot of work would need to be done in order to work out the impact. Because there has recently been an increase in the number of urgent suspected cancer referrals, and the services are already overloaded and creaking, and so, how would you manage that if a lot of patients started coming forward? You have to have that capacity to deal with those patients as well. So, on paper, it would be absolutely wonderful, but it would need to be thought through.

That's fine. Thank you. And Professor Crosby, if you ever want to come in on a question, just raise your hand, or a pen, or something.

Yes. I wanted to say that it does need to be evidence based. It's a nice idea, which we've seen looming in self-referral for chest x-rays and lung cancer referrals. It is easy to increase the number of referrals through, but no more diagnoses of cancer. I think a more important issue though is to ensure that GPs and primary care have access to the best advice possible. So, sometimes, for symptoms like bloating in the abdomen, they don't know whether it's gynaecological cancer or colorectal cancer, and secondary care will sometimes reject those referrals. So, I think, sometimes, a more symptomatic-based, referral-based mechanism into secondary care, from GPs, or even e-advice for GPs, would, I think, be the step before self-referral.

Just ever so briefly, Dr Hanna, you wanted to come back in. 

We do know as well that the Target Ovarian cancer pathfinder study was recently reported, and we do know that GPs would welcome more support in terms of interpreting CA125, interpreting ultrasounds. And awareness among GPs as well for some of the symptoms of ovarian cancer is less than it is for others. So, support and education for GPs would be important. 

And how can that be done?

Pardon?

How should that be done?

Well, there are initiatives. There's the GatewayC, which is an online resource for people in primary care. There's my own cancer centre—a colleague there, and our Macmillan GP lead have done a series of educational online events, educational events for GPs and people in primary care. So, that sort of thing. I don't know; I was trying to think it through, really. CA125—when you get the result, could you just have something at the bottom of the result to explain what to do? If it's equivocal, or only slightly raised, what does it mean if it's normal in somebody who's got symptoms? Just something like that; you get that with some microbiology results.

And, then, in terms of ultrasound, I don't work in primary care, but can something be done about the ultrasound reports in order to advise on next steps? So, there might be some things that could be done like that. 

Thank you, Dr Hanna. Right, I'll bring in Sarah Murphy, who I know has got questions relating to data. So, that's why I wanted to hold back on that conversation. Sarah Murphy. 

Yes, thank you very much, and thank you, both, for being here. And thank you very much as well for the written evidence that you've provided, which was really thorough and detailed. So, I just want to ask a few more questions about data and pathways. So, Dr Hanna, you said in your written evidence that there is a need for more accurate—more and accurate, data, sorry—on gynaecological cancer within Wales, because there's no detail about which diagnostic test or treatment is causing the delay, so where the pinch-points are in the pathway. You also said that routinely available data on an all-Wales basis is not disaggregated by cancer type, and, so, all the gynaecological cancers are pooled together. And you said as well that clinicians are often reliant on reporting their own experiences without the data to back up their assumptions. 

So, I wanted to ask: we've recently seen how Welsh Government has invested millions of pounds in changing from one system over to the cancer informatics system, which was rolled out in Velindre in November 2022. All of those things that you highlighted as being needing to happen, have they happened in this new system? Has this been addressed in this new system?

No, they haven't. So, we're basically getting all gynaecological cancers put together, and all we can do at the moment, as far as I'm aware, is to disaggregate it by health board, and by whether the patients are waiting for diagnosis or treatment. So, if they're in the diagnostic pathway, we can't see which test it is that they're waiting for. The only thing we can infer, really, from the fact that the waiting times are so poor—sometimes as low as 25 per cent of patients are actually going through the pathway within 62 days—is that you could make the assumption that it's everything everywhere all at once. But, of course, in terms of trying to unpick that then, and how can you improve it, we do really need more information to back up. It's very difficult to write business cases for things to be done if you haven't got that information to actually back up what you're trying to achieve. 

We haven't talked about the workforce either—I don't know if we're going to do that—but we just haven't got that information, so we're relying on personal audits, actually trawling through individual data to try and get information. We have got the national ovarian cancer audit, which is going to be rolled out through the healthcare quality improvement partnership, and we're really pleased about that—

I'll come to that in a moment, if that's okay. 

—but we've really struggled to get that done. We've been asking for it for years, but finally, we have it. So there are some things that are progressing. 

Yes, of course, of course. But just to come back—I will ask a question about the audit as well; as you said, that is very important—but just to come back to this new system, then, we had a written statement from Welsh Government in January this year that said the immediate next phases will be to roll out this new system, this cancer informatics system, to all health board cancer teams so that they can then move off the old system and begin capturing patient and treatment data in this new all-Wales cancer informatics system. Again, additional millions of pounds have been allocated for this to happen, I believe, over the next 18 months, but it seems that what you're saying is that this is not going to address any of the issues that you've just presented us with. So, can you just give us a bit of information, I suppose, about what this delay and this lack of information is doing and how this is contributing to waiting times and the care, I suppose, that patients are receiving?

[Inaudible.]

Tom, did you want to come in here?

Yes, I think so, because this is a national issue. We did have to get off the old system, CaNISC—the cancer network information system Cymru—because it was a legacy system and was not supported, and we have done that safely; patients haven't fallen over, we've enabled continuity of treatment. But we're not able to do really key things that I think you've raised there, Sarah. So, we do need to know the tumour sub-types of urology and gynaecology, because we don't work in those services—we work in ovarian, cervical, prostate, bladder cancer pathways. We do need to know the component waits and we don't know those yet. We do know some of that at a health board level, but we don't know it at a national level. But I cannot also tell you routes to referrals for emergency diagnoses as opposed to GP referrals, as opposed to routine referrals, et cetera, and I don't know stage of diagnosis. And to be honest, we knew those seven years ago, and we don't know them now. Anything you can do to help with that, that would be very, very welcome, and without that intelligence, it is really difficult to underpin that. What are the things that are underpinning that variation that we talked about before: one-and-a-half and twofold variation between services a few miles apart? What is that due to? Is it access to CT scanning, pathology, PET scanning? We don't know that at the moment at a national level, so I think that's a really key issue.

And just, as well, to come back, to join up something that both of you just said—. Dr Hanna, you mentioned earlier on the single points of failure—that somebody can be in the pathway or on the pathway and their clinician is unavailable—maybe they're away, maybe they're on leave—and then their treatment stops. Is that partly because of this system and not having that information within that system?

It's probably not necessarily due to not having the information in the system, because if somebody's going to be on annual leave, that wouldn't figure in it. I'm not sure that's related to the data, but it's related to the fact that the pathway's in multiple places with small teams lacking in resilience, I would say. 

Thank you. And then, my final question then comes back to what you were saying—so, UK Government made a commitment to fund a national ovarian cancer clinical audit, but as we've heard today, the pilot has taken place in England, but it didn't include Wales, because of the lack of funding stream and compatibility of computer systems. So, in your opinion, has this potentially meant that we didn't get funding for the pilots like the diagnostic hubs in England, which is what we heard in a previous session? And as you said, I know we are taking part in it now, but you've also highlighted in your written evidence that it's all well and good having the audit done, but do we have the funding facilities and the skills in place to then actually evaluate what comes back in that audit? Do we have those systems in place? So, I suppose: has there been an impact from us not participating already in this, as England have? And, going forward, do we have the systems in place so that we can make the most of this audit for the people of Wales? Thank you.

So, I think if you're talking about service improvements there are two main basic questions. One is: could we work better, smarter, faster? The other is: have we got the staff and the resources and the facility, have we got the capacity, to meet the demand? And I think we've got issues with both, actually. So, yes, we need to nail the one-stop services, we need to get digital pathology, we need joined-up regional working, we need the money to follow the patient. But, equally, we do have significant capacity issues, which I've talked about before, and waiting for surgery, waiting for radiology, waiting for pathology. So, I think it's both, is my view. 

Thank you very much. If there's nothing else, then, I'm finished now. Thank you, Chair. 

Thank you, Sarah. Jack Sargeant. 

Thanks, Chair. I'm conscious of time, and my understanding is that it's the Chair's birthday as well, so pen-blwydd hapus, Chair, and just one question, perhaps, from me. Look, we've spoken a little bit about research and innovation in earlier questions, but if I could focus on access to new types of treatment and a particular example of what was a new drug nine years ago in NHS England, Bevacizumab— 

Bevacizumab.

Perhaps I will refer to it as its trade name, Avastin—

Yes, it took me a long time to learn how to say it. 

—it'll be easier for me. We heard in the last session that it was nine years ago when that was introduced into England. It took a little bit longer to go into Scotland—I think it was seven years ago—and similar in Wales. But we also heard the funding—. It's funded in England, NHS England, but it's not funded in NHS Wales. I'm just trying to understand why that is the case, really.  

Okay. Bevacizumab with ovarian cancer—the big trial that showed an advantage in this high-risk sub-group of patients with ovarian cancer was with 7.5 mg/kg, whereas the licensed dose is higher, and so NICE could not look at it. So, it then got funded in England through the cancer drugs fund, which we don't have in Wales. So, it was because of that. So, it couldn't be NICE approved. It was then looked at—. There's a group called the one Wales medicines advisory group; it was looked at through that and it was turned down because it wasn't deemed to be cost-effective. It was only when the price came down that it was then deemed to be cost-effective and it was then approved. The things that are looked at by NICE and approved by NICE, there is an agreement that they will be funded in Wales. Sometimes, NICE will look at new drugs and say, 'This is funded for use via the English cancer drugs fund', and so we then have to ask—I'm talking about recently now—we then have to ask, 'Is that then applicable in Wales?', and, more recently, we have had, 'Yes; yes it is'. But the way it's given—they have the managed access scheme in England, so we have to check on that, how we use it. So, if it's approved by NICE, we generally can fund it.

There is an issue though, because some of these drugs are maintenance treatments for two years. So, whereas you used to have patients who they'd have six cycles of chemotherapy and then they'd go on to follow-up and they'd be seen once every three months, they're suddenly having treatment every three to four weeks for two years. And so we get the funding for the drug, but then you've obviously got the issues—you need to get the chair space if it's given intravenously, you need to have the clinic space and the workforce to see the patients in clinic and to assess them for toxicities, you have to have the ability to manage those toxicities, and the funding for that doesn't necessarily come with the drug. And so you can introduce drugs within your existing capacity, but, then, at some point, you then exceed that capacity and then the system then starts to fall over and to creak. 

Just to follow up then, I wonder—and you've explained really well the approach taken and NICE not accepting it or approving it, if you like, but the English, and it was the cancer—  

Drugs fund.

—drugs fund.

Have you heard of that?

I must say I haven't, but is there a case for a Welsh version of that?

Well, I think this has been debated. Professor Crosby might be able to talk to it more, but personally I think there is, yes. The cancer drugs fund was set up, I don't know, 10 years ago, possibly. So, it was basically for drugs that can't or don't go through NICE. It has allowed access to particular things, and it's certainly allowed access for gynaecological cancer treatments.

Shall we bring in Professor Crosby?

Yes, just to say, I think the issue of access to drugs is not the issue at the moment; anything that goes either through NICE or the cancer drugs fund is broadly approved by Wales. We have a treatment fund, and anything that's approved there has to be on the formulary within 60 days. The key issue, though, is, as Dr Hanna has said, that, whilst the drug is funded, and it has to be funded effectively by health boards, the pharmacy preparation, the delivery with specialist nurses and the assessment of patients through medical assessments et cetera is not supported, and that is a major issue at the moment. We've got lots of really good drugs coming through with immunotherapies et cetera but we are really, really drowning in terms of demand in out-patients in terms of assessing these patients. So, once again, any support you can give us with those, with that support for patients who need these treatments would be welcome, but I don't think at the moment the main issue is access to drugs, I have to say. 

Just very quickly, Chair, I understand the point being that the drug is funded but the services alongside that aren't funded. Is that the case in England?

I don't know whether it's different in England, but money follows the patients in England through activity, and it doesn't necessarily in Wales.

Okay. That's—. We should look at that as well. Thank you. I'll leave it there, Chair.

Yes. Thanks. Gareth.

Thanks, Chair. How concerned should we be that many women are diagnosed with a gynaecological cancer in hospital, often after attending A&E? What action is needed to reduce emergency presentations and to improve the experience of patients with late-stage cancer symptoms when they've been admitted through A&E, and, in particular, why Wales would have such high levels of emergency presentations among those aged 75 and over?

Yes. So, I think we should be concerned. We are concerned. I think that, obviously, that boils down to patient awareness of symptoms and then what happens with their GP as well. So, obviously, if the patient had had particular symptoms and been referred via the two-week wait, then they wouldn't then end up in A&E, would they? Obviously, there will be a few—. We're never going to completely get rid of emergency presentations, because there will be a few, but I think there are too many as it is, and it boils down to—

Why would that be the case then, that they're going to A&E? Is it because—

I'll just come in just to help Dr Hanna there. It is just access to diagnostics—it's access to GPs, and it's access then from GPs to diagnostic tests. And that is—. We've done international cancer benchmarking partnership exercises to look at Wales compared to the UK, compared to other countries, and we know that the pathways after patients present to the healthcare system—usually GPs—are too long; we know that patients, whilst waiting after having seen a GP, have to then sometimes go to A&E because symptoms progress. So, it is access to diagnostic tests, and, as Dr Hanna said before, access to one-stop PMB clinics, patients with bloating, women's health clinics—all of that is under so much pressure at the moment, the waiting times are so long, so primary care are reluctant to refer because secondary care hasn't got the capacity. It's access to diagnostics that is key. And as I say, workforce is the biggest issue, and we need to have those medium to longer term plans for the workforce to improve, but, in the meantime, we need to use what capacity we do have to the best of our ability, and that must mean working across organisational boundaries. 

Is it a problem that's felt on the shop floor, if you like, of A&E, because obviously we talk a lot about pressures in emergency services, and would there be a more effective way of getting to diagnostic tools for the patient, whether there would be a definitive path to that, whether that would be through the GP services or whether it's some other recommended service? What would that be in terms of making the gynaecological side of things play its role in reducing waiting times and pressures on A&E services, in light of what Tom's just mentioned there about workforce and all the pressures within the system? 

Of course. I think it's the worst of all options, isn't it, for a patient to turn up to an accident and emergency centre when they're not an accident or an emergency, and they know the pathway that we need them to be on. So, they need to go to a diagnostic clinic that is able to assess that patient, do the tests in a timely way, within days or even the same day, and that's not what is available at the moment. So, that is where patients are turning up to A&E, where we know the experience is not good and patients are kept waiting et cetera, and it's the worst of all worlds. Emergency presentation of cancer for Wales and the UK is far, far too high, for all the reasons we've said. 

Thank you, Chair. 

Thank you. Jack Sargeant.  

Thanks, Chair. The benefits of a healthy lifestyle are quite well-documented, I think, when it comes to cancers. Are there any specific risk factors when it comes to gynaecological cancers in particular? And then, if so, how do we ensure that there is reliable and readily available information for women and girls to have this information up front about what they maybe should be looking out for and so on? 

So, obviously, healthy eating, avoiding obesity and avoiding smoking—I would say they are the big two, really, in gynaecological cancer. We know the instance of endometrial cancer is going up and up. It's risen by 50 per cent over the last years, and that is linked to lifestyle, in particular obesity. Obviously, these are—you know, eating healthily, not smoking, avoiding alcohol are all—. You know, they're generally healthy, aren't they? They're not specific to gynae cancer. So, I think if you're going to try and promote a healthy lifestyle, then that would need to be part of a wider campaign, really, and obviously gynaecological cancers would benefit from that. 

Can I just really briefly come in just to say—because I'm going to have to leave, actually, shortly, for another meeting—there's uptake of HPV vaccination, there's uptake of screening services as well, and how we ensure that, underserved populations, there is not inequality of access to those services as well. And just to say 'thank you' to the Health and Social Care Committee for looking at this issue. It's a key issue for cancer services at the moment, so I really welcome your scrutiny. 

Thank you. As we do draw to the end of the meeting now—. We are a bit over time; apologies, it's been a bit rushed through the session this morning, but I suppose just to give you both the opportunity—you've done that to a point just now, Professor Crosby, but—. Ultimately, our committee, we want to be making recommendations to the Government in terms of improving gynaecological cancer outcomes, so just to conclude the meeting, give us any bullet points that you think perhaps have not been outlined in the meeting so far today—not the problems, but tell us what you think needs to change. What can we ultimately recommend to the Government to change their position on in order to have better outcomes in regard to gynaecological cancer outcomes? Dr Hanna.

Okay. So, one-stop clinics; digital pathology; joined-up working; oversight; reinstating services lost to COVID; data; the workforce. We haven't talked about the workforce; we don't know what the gynaecological cancer workforce is in Wales, so how can we know what we need to do if we don't know where we're starting?

So, what needs to happen? What needs to happen in regard to the workforce?

Well, we need to find out what the gynaecological workforce is in Wales; we need to then decide what we need, and then recruit and create jobs if needed. We need to, in terms of joined-up oversight, there isn't an overarching gynaecological cancer oversight group at the moment.

Should there be one?

I'm on the cancer site group of the Wales Cancer Network. Any of the people on the gynaecological site group, we're not remunerated for the work we do, it's completely voluntary, and we have no managerial responsibility.

So, what needs to happen? What would you like to see happen?

I would think we need some kind of overarching body that's able to monitor, work with the health boards, advise and oversee, which has got clinicians involved in that.

Okay. Thank you. Anything else as well in regard to—? I know we hoped to have more time to talk about the workforce. Was there anything else you wanted to add in terms of the workforce?

The workforce?

Workforce issues.

Well, just to say that we don't know where we are at the moment, so we need workforce planning, don't we?

Okay. And there's not adequate workforce planning at the moment—is that what you're saying?

Not that I'm aware of.

Okay. Professor Crosby.

Yes. I think it's really difficult to summarise, because most of the issues are fairly generic to gynae and wider cancer services, but system leadership, accountability and oversight, I think, is a really key issue at the moment that has possibly gone backwards, and there's the risk of doing so with the emergence of the NHS executive. I think there does need to be regional accountability, but how does that work really in terms of accountability, in terms of funding, mandate, authority to work differently across organisational boundaries?

I think workforce planning is one thing, but it's also having the capacity to train the appropriate people in organisations. So, we quite often look to Health Education and Improvement Wales to create a workforce plan for who we need, but then organisations are being held to account for their current performance, so they will meet with outsourcing, insourcing and other mechanisms just about trying to maintain their performance, but they're not creating the capacity to train people for the future. So, we're not—. We must be very careful that whilst we try to improve performance, we also have a view to medium and longer term resilience and sustainability with services, as Dr Hanna has described, and at the moment, the mechanisms for accountability, I don't think they're there to ensure that happens.

Thank you, Dr Crosby. Is there anything else either of you would like to add before we close this section of the meeting? No. Thank you. Can I thank you both for your time today? Apologies that we've been a little bit rushed through the questions, but we thank you for your time today and we appreciate you're both very busy people. Thank you also for your advanced papers as well, before the meeting. Thank you very much. Diolch yn fawr iawn.