Health and Social Care Committee

Morning, I'm Claire O'Shea, I have a job and everything, but I'm here as a cancer patient who has experienced gynaecological services in Wales.

Hi, everyone. I'm Lowri Griffiths, I'm director of support, policy and insight at Tenovus Cancer Care, but I'm also chair of Wales Cancer Alliance, which is an alliance of 26 third sector organisations that deliver cancer services and campaign for cancer improvement in Wales.

Hi, everyone. I'm Rachel Downing, I'm head of policy and campaigns at Target Ovarian Cancer.

Lovely, thank you. Sorry, there's one thing I should do before we show the video. Can I just do a quick translation check if that's all right? If you can hear, can you just put your thumbs up? Okay, that's fine. We'll sort that out, no problem at all. Thank you ever so much. First off, if I can ask the technical team if they can begin the video this morning.

Can I thank Judith for being willing to tell her story publicly as well as to the engagement team? It's such a powerful story. I'm just so sorry to hear Judith's story. It's difficult to know what else to say, really; it's just a terrible story. For us, as members of the committee, it's more powerful than anyone who can just sit here and give us written evidence or talk from a third-party point of view, so thank you, Judith.

We heard two other video stories last week as well. So, perhaps, Lowri, I can address the first question to you. I think other Members will have questions about Judith's story, and they'll no doubt incorporate them into their own questions, but we just hear—from Judith's situation, and from the videos last week we hear of symptoms being dismissed and ignored by healthcare professionals. Is this something, Lowri, that's happening across primary and secondary care, and tertiary care? Is there a gender bias in healthcare?

First of all, I just want to pay tribute to Judith myself, and on behalf of Tenovus Cancer Care, for actually telling her story so bravely, and I know that she's actually watching this morning, so diolch yn fawr iawn, Judith, am fod mor ddewr—thank you for being so brave. Obviously, we wish her all the very best.

I think, also, it's really important to say that people are working very, very hard in the health board—not just that health board, but across all health boards and across the NHS in Wales, and we need to recognise that. I think that's really important. But what we're seeing here, I think it's important to say, is not an isolated incident. It could be argued, and we hear that people say, 'The majority of people are okay', and what we're learning is, actually, that that majority is getting smaller and smaller, and these kinds of experiences are getting more and more frequent. I'm sure Claire can add in her own experience, and others who I know have contacted Claire since she spoke so openly about her experience are testament to that. So, what we have here is a situation that is common, or becoming more common, I think, as time progresses, where we see people maybe not being taken as seriously as perhaps they should be, given that they know their own bodies. I think that's the challenge that we have here, given that we have such an almighty recovery from COVID—to address those challenges, but, actually, to address the challenges that existed within the system before COVID started. So, we're really on the back foot here, and now these women are actually falling foul of the system, and we're seeing more and more of these experiences. So, yes, it's a real shame and an incredibly moving experience, but it's not an isolated incident.

Thank you, Lowri, and I echo your thanks to Judith, and we, as a committee, wish Judith well also. I just hope that through our work we can shine a light on bad practice and make recommendations to Government that will bring about change so that others don't have to go through the same experiences, or those chances are greatly reduced. At this point, I'll bring in Sarah Murphy, if that's all right. Sarah.

Thank you very much, Chair. Thank you, Judith, and thank you all for being here today. Just to follow on, then, I want to ask what action you think is needed to address the gender biases held by some healthcare professionals that female health complaints often relate to hormones or underlying mental health issues.

Do you want to pick that one up?

I can start with that one. I think it's something we see often in ovarian cancer. So, quite often, when women visit their GP, it's an irritable bowel syndrome diagnosis, which shouldn't happen after the age of 50 without ovarian cancer being ruled out; menopause is another one. So, I think GP education is something we'll probably return a lot to in committee today, but that is just so important—that GPs are educated and know that the symptoms that we're going to be talking about today are not just always menopause or IBS. Particularly for ovarian symptoms, they are abdominal symptoms, so you're talking about bloating and abdominal pain and recurrent urinary tract infections under this diagnosis; they don't present, necessarily, as something that would flag gynaecological, but that's where that education comes in.

I think empowering women is really important, so empowering women to know that their GP should be listening to them, and if they're not happy with, particularly, their GP, but also, through the secondary care experience, if they're not happy with the treatment that they're getting or the support that they're getting, empowering them to ask more questions and trying to get that help. But it does rely, fundamentally, on healthcare professionals taking those symptoms seriously and taking experiences like Judith's as seriously as they can.

Absolutely. That follows on nicely, actually, to my follow-up question, which is: how, then, do we empower all women, including those who aren't able to advocate or used to advocating for themselves, to ask for a second opinion if they aren't happy with the care they receive from their healthcare professionals?

I still think it's difficult. I've internalised a lot of what happened to me along the way, and I still now, at times, have to sit down and psyche myself up to make a phone call, send an e-mail to say I'm still not happy with what's happening. So, I think there has to be a culture change. I know, first off, lots of women struggle with the front line, the receptionists; the triage that happens can be very uncomfortable. I think you all hear from your constituents at some point or other that they're like, 'I can't have a friendly conversation; it's quite combative to try and get an appointment.'

But then I think there should be a switch whereby medical professionals offer you the option of a second opinion. It should be kind of like, 'We're here to look after you, and, actually, I'm happy for you to see someone else', rather than you feeling like you're challenging someone's expertise, or challenging their professionalism, which is really difficult to do. You want to have goodwill, and you want to maintain a good relationship, because you're relying on this person to care for you, so to then say, 'I don't trust you and I want a second opinion,' is really difficult. So, I think it should be an onus on the medical professional to make that offer to you, and it should just be a part of the pathway, that it's second nature.

Can I just add that information is really crucial here, I think? Who knows when they're first diagnosed with cancer what treatment should look like, what that experience with your GP should look like? We've found, increasingly, that patients aren't given written information or signposted to support organisations like have given evidence around the table today who can really support patients with that. I think if you don't know what 'good' looks like, it is very difficult to advocate for yourself.

That's true. Thank you.

There's quite a lot of research being looked into at the moment, international research, around that gender bias. We've had some evidence from Marie Curie, for example, around some of the pain thresholds that women experience and whether or not they're taken seriously. So, there is a lot more work that needs to be done in this particular area. I think, as well, the older generation, particularly, don't feel comfortable challenging. They accept everything that they're told. Not everybody, obviously, so people can advocate on their behalf, but even someone like Claire, who is a strong, independent, intelligent woman—sorry, Claire, to embarrass you. For someone like Claire to even feel slightly intimidated by the system, then what does it feel like for somebody who doesn't feel that they have a voice? So, I think the onus is, as Claire said, on healthcare professionals to offer, 'Would you like to speak to someone else?', or to facilitate those conversations if they're asked.

Thank you very much. Thank you, Chair.

Joyce Watson.

Just following on, is there room for advocates here for those who don't want to challenge, and maybe for those who don't want to be challenged? If there is room for advocates, what should that advocate look like? Who can do that?

Gosh, that's a good question. I'm trying to think. So, the third sector does advocate on behalf of patient cohorts, less so individuals, I suppose, and that's the challenge, isn't it? You can get very invested in an individual's case, so how do you make sure that that works for everybody then and that you change the system? So, I think, as well—. You yourselves, I'm sure, as MSs get individual constituents coming up to you as well, so there's a route there. But I'm not quite sure what it would look like, I don't have that answer, but I think the important thing is: why do we need advocates in the first place? The system should be working for people, and I think that's the challenge. If the system works, then you don't have to really push and pull against the system. I think the system should be working effectively, and it's not one issue within one particular area, it's different things across different areas, and I think that's the challenge that we have, that you can't pinpoint one particular place where things tend to go wrong or that you can actually unpick. So, I don't quite know what the answer is, Joyce, to be honest with you, but I think there is a need to make sure that the system is easier to navigate.

Talking about the system and moving on, why do you think that some women with gynaecological cancer symptoms are misdiagnosed by their GP?

Shall I kick off, and then—?

Yes. I've got a couple of things to say, so—.

Well, do you want to go first?

Okay, I'll go. I think my first conversation with my GP was that I had several different symptoms. They were hard to kind of pin down to one specific illness. There were things, like I was saying, 'I need to go to the toilet all the time; it's really difficult.' It was during COVID, so there were no public toilets, so, as a 38, 39-year-old woman, I was taking decisions about not going for long walks, because I didn't know how to manage that, and my GP just kind of said, 'Well, that's what happens to women when they get older.' And I was 39, which didn't feel old to me, so it's just those kinds of conversations where they kind of look to reason away your symptoms.

But after that, the next conversation was, basically, 'You've probably got IBS. There's no diagnosis for IBS. We do it by a process of elimination. So, once we've ruled out other conditions, we'll basically tell you you have IBS.' But they didn't really rule anything out for me. There was one physical examination where there was a palpable lump, but they didn't pay attention to it; I don't understand.

And the next part of that was they sent my blood away for tests, and then nobody actually got back to me to say what my blood tests said. I had to ring, like, a couple of months later, and say, 'Well, I'm still experiencing the symptoms. What did my blood tests say?' And they said, 'Oh, they didn't show up anything.' And it was like, 'Well, what's next for me then?' I had to kind of push that. So, it's ruling out cancer, rather than ruling in IBS, which is what it felt like.

So, there is a lot on that kind of initial discussion and not having your symptoms kind of dismissed one by one, but looking at it in the round, and taking it seriously as a combination of things.

Yes, I think there is a huge education challenge. So, 43 per cent of GPs, when we surveyed them across Wales, incorrectly believed that symptoms of ovarian cancer only present at the late stage. So, we know there's a big education issue, but also I think Claire's point there brings up a really important point around safety netting. So, what do GPs do when they have patients with symptoms, who are presenting with symptoms on more than one occasion, but have potentially unremarkable test results? And we know that's somewhere the GPs really want more support. So, if you have some weird symptoms, but there might not be anything that you can spot in blood tests or in scans that they've had, it's really important that GPs have the systems in place and the support potentially from secondary care to keep up with these patients and follow-up with them, and proactively follow-up with them. Because we hear time and time again, if you've been to see your GP and you have these symptoms, and you're told your test results are normal, it can feel very difficult—and this comes back to the advocacy point, I guess, in the sort of round—to then go back to a GP again and say, 'Well, I'm still having these symptoms', after you've been told the test results were unremarkable. So, I think we need to put a bit more onus on that proactive GP safety netting in primary care.

Isn't there also a danger that that's what people want to hear? You know, 'Oh, my test results are fine.' Something in the back of your head is telling you it's not fine, but you've got this piece of paper that tells you it is fine.

And I think that's why safety netting needs to be more than, 'Come back and see me in 12 weeks or eight weeks if your symptoms are still around', which is what, quite often, people are told. So, that's why it needs to be proactive from primary care: what can we do in primary care systems to flag-up patients that have these? And there are some ways and we've been looking at ways that we could automate some of that follow-up, other ways that can be taken up. We know that GPs are really busy, but is there space across the whole primary care sector to automate some of this, just to make sure that it happens, and it's not relying on patients who, as you say, might not want to follow up because they've been comforted by what they've been told?

Joyce, can I just come in on this as well? So, I've had lots of conversations with lots of different people ahead of this session, and one of the things that we've been consistently told is that GPs need to get hands-on with women if they've got gynaecological symptoms. And now, more than ever, that's really challenging. Sometimes, you can't get past the receptionist; they're triaging because they're so busy, the pressures in primary care are so big. [Interruption.] Rhun's got a call. That's his GP ringing back to say he's ready to speak to you. [Laughter.]

So, I think getting past the receptionist, getting an appointment, is that a phone appointment, and then it might be a face-to-face appointment, and then face-to-face then, you've actually got to get on the couch and get yourself ready for an examination. So, the steps to get to an examination for a gynaecological issue are quite difficult to get to that point. So, I think a lot of the messages that I heard when I had conversations with experts—Jo's Trust, for example, and experts in obs and gynae—they were saying that GPs need to get hands on and examine patients, and a lot of the symptoms would then—. The presentations would then trigger that referral into secondary care, as opposed to this watch and wait and come back, and you've had a blood test and it's clear—not all of them, mind you, but a lot of the different gynae cancers.

We know that there's big investment now in multidisciplinary hubs, and in lots of those there are GPs attached to them. Would it be worth while thinking about sessions particularly for women's health, gynaecological health, and maybe a weekly clinic, to take away all of what you've just said, and give women access directly into a stream where they might be understood and where people, we presume, would be better trained to understand them and take them and their symptoms more seriously? Is that something that, since we're putting the investment into the fabric, that we might also put the investment into the training? And also sending a message to women that they will be listened to and their conditions understood better—is that an option? Particularly when we talk about things like ovarian cancer, I spoke in the Senedd some months ago about the fact that it's called 'the silent killer'. It should not be the silent killer. The symptoms are there. So, would something like that help, do you think?

Yes, it's not a silent killer, and it has that reputation, and it's one of the frustrating things that I think there's still a slight mindset around that it has this reputation, but it doesn't; symptoms are present in the early stage, but they are, generally, non-specific symptoms. I think with that idea, yes, that could be helpful. I think there's always the problem in the detail, though, because ovarian cancer symptom presentations wouldn't necessarily present as a gynaecological issue, because it's that bloating, it's that abdominal pain. So, I think we definitely need that option available, but what we absolutely need is primary care to be educated and clued up and to know that when someone is presenting with these persistent symptoms, there's a very clear diagnostic pathway, particularly for ovarian cancer. Primary care has direct access to diagnostic tests, so, in a way I think—. I'll leave it to Lowri to reflect for the other gynae cancers, but I think for ovarian what we would like to see is, yes, that option available, but absolutely we want everyone as far as possible to be diagnosed in primary care, because we just know the outcomes are better there.

I think you're talking about the regional diagnostic clinics, are you? They definitely have a place. With a lot of cancers, not just gynaecological cancers, there are a lot of vague symptoms around—I'm thinking pancreatic cancers or some oesophageal cancers, or other cancers as well, which will present with vague symptoms. So, I think, as a way to diagnose vague symptoms and the reason for those symptoms, I think rapid diagnostic centres or clinics definitely have a role to play, and they're incredibly important to rule out as well, and also to find other conditions as well, which can be equally debilitating in terms of some of the other things that can be identified through those clinics. But as Rachel says, that doesn't excuse, then, the system from being as efficient and as effective as it should be, and actually the pathways and the optimal pathways that are being developed at the moment by the Wales Cancer Network being integrated into our health boards and being as effective as possible, so that people can pass through those pathways, as they should do, within the 62-day target. So, rapid diagnostic clinics definitely have a role to play, but that doesn't mean that that's the be-all and end-all and that it negates the need to improve our systems across the board, but it's certainly something to consider.

Thank you.

Thank you. Any further questions, Joyce, because we're a bit short on time?

Yes. We were talking about the tools that are commonly used at the moment, and the most is ultrasound for ovarian cancer, or the CA125 blood test. Are you confident that GPs have the skills, first of all, to interpret those results, and, if necessary, undertake internal examinations?

So, on the interpretation issue, GPs themselves tell us they're not particularly confident, particularly with ultrasounds. We asked them, and 57 per cent said they were confident in interpreting ultrasound reports, and what became very clear is they need more help and support. Lots of them would say they would benefit from a clear descriptive report. So, when the ultrasound comes back, if it's quite tricky to read, they really need that little bit of extra support. Or sometimes, ultrasound reports come back with the finding, 'Ova not visualised', which is not particularly helpful to a GP who's trying to rule out ovarian cancer. And, with the CA125, again, GPs have told us they would really like some more information and support, so what to do. Ovarian cancer is most common postmenopause, so what to do in cases where a woman may be postmenopause, has ovarian cancer symptoms, but that CA125 is not raised. The CA125 is not always accurate in early-stage disease. At Target Ovarian Cancer, we really want to see both those tests conducted simultaneously in order to ensure that we're catching as many early-stage cancers as possible, because that early-stage diagnosis really makes the difference in outcomes. But I think we would be really interested to see how we can get GPs more support. Is it access to expertise in secondary care, through advice and guidance clinics, and being able to pick up the phone to a colleague in secondary care and say, 'Oh, I've got this; I'm not super sure what to do about it'? But, I think all that help that we can give to GPs on getting those test results analysed correctly is going to be really important.

Thank you.

I'm just conscious of time, so we'll just have to—. If it's okay, it might just be one person on the panel who can answer a question, if you can consider that between yourselves. Thank you. Rhun ap Iorwerth.

Thank you, Chair. Maybe we can save some time, because a number of the areas that I was going to pursue have been discussed already, so we don't need to go over them a second time.

A general question from me, possibly, then: if we look at the fact that waiting times are longer at present in Wales than they have ever been, what are the main factors when it comes to the gynaecological cancer waiting lists? Are we talking, fairly simply, about a lack of priority for women's cancers than those that strike men more, or is there a more structural problem within our health services, such as a lack of beds, which means that we can't offer treatment in a timely fashion? Lowri first.

Do you want me to answer? Thank you, Rhun. Well, I had a word with someone from the obs and gynae college yesterday, before speaking to you, and one of the reasons they said for making waiting times worse is that the surgery waiting lists—there's insufficient capacity to have that theatre space for them, which means that women have to wait longer for the surgery that they need to pass through the system.

And that happened to you, didn't it, I think?

Yes.

So, with the lists being condensed, it means that you can't get as many people onto the list and therefore everybody's buffered through. So, that's one issue, I think. So, if we could increase the list space for surgery, that would help. I mean, there's a catalogue of things that happen—and we've heard it, through all of these experiences—whereby people may be delayed in primary care, they may then be delayed in diagnostics, they may then be delayed in surgery, then they may be delayed starting their treatment. So, you're talking about a three, four-week wait from knowing that you're going to start chemo to actually starting chemo. So, right across the pathway, from a point of suspicion to 62 days, which is your target, there are issues, and we need to tackle them all separately, I suppose, so that, collectively, we get that condensed time.

And again, a point that I was going to make today was that we used to have a campaign called 1000 Lives, delivered through the NHS, and it was a really open and popular campaign that everybody bought into, that through this process improvement, we wanted to save 1,000 lives. Where has that gone? It's embedded now into the NHS, but it's not there, and that's exactly what that used to do: it used to target interventions at specific areas along that pathway to try and condense that pathway, so that we could get it down to what it should be. And, at the moment, I think we're about 35, 38 per cent of people actually meeting that target in terms of that pathway. So, there are lots of different issues, but lists are one example—delays in primary care, delays to diagnostics, delays with radiology, reading those scans, delays to planning for chemo. You were talking about bank holidays now pushing everything back in terms of chemotherapy. Right along the pathway there are challenges, so I don’t think there’s one answer, Rhun.

That's a very, very useful summary of something that we've discussed before. It's targeting all of those elements along that journey. What about when it comes to gynaecological cancers in particular, or cancers that impact women in particular? Are there particular red flags there that point us to where we should be taking action?

Well, I think we've got a data issue, because we don't have that data disaggregated, it is very difficult to work out what action we need to take. So, the five gynaecological cancers have very different diagnosis and treatment pathways, so when we see them together, we know that we've got a problem, and we've probably got a problem across all of them, but I think in order to work out what interventions we need to see to make that change, we need that data disaggregated, and we need to see just better data. So, there's been a recently commissioned audit across England and Wales on ovarian cancer; that's going to be really exciting and great to get that data to actually have that complete picture of what happens to women from when they're diagnosed, how many have surgery, what's their surgery waiting time like, how many are accessing chemotherapy or new cancer drugs, and I think without that data, it's really difficult to say what we need to do to improve the situation.

Yes. Is there good practice that we can look to in other countries that shows us the way forward there?

On—?

On data collection in particular—that disaggregation.

On data collection. I think Wales, along with England, are going to have some really good data on ovarian cancer once the audit's out. I can't speak for the other gynae cancers—I'll ask Lowri to do that—but I think we would want to see similar across all of them, I think it's fair to say, and I think it's that kind of real-time data as much as you can, in order to identify where those pinch-points are in the system. The non-disaggregation of gynae cancers is a problem right across the UK. It's something that we see time and time again, and it really needs to change.

I really like your optimism around our data here in Wales, because I think we're probably going to find that there's a challenge in terms of our own data to be able to input into that audit. I'm hopeful that it will be there, but I haven't seen—. I think we're going to be challenged in terms of not having that data collected in the first place, so that we can actually do the analysis of where those improvements need to be made, and I think data is a massive issue. If it can be one of the recommendations from this inquiry, I think, alongside other cancers, we need to get to grips with our data. We've got a new system coming in, it's embedding now, it has taken 10 years to actually get to this point where we're actually now rolling out a new cancer informatics system—it has taken 10 years to get to that point. If we're not collecting that data in an accurate way, we're never going to get that analysis, and we're never going to break those pathways down so that we can do the process improvement that we've talked about. So, it's a huge challenge, Rhun. Sorry, Claire, I don't know if you've got—?

The only data I'm interested in—I think it's only 34 per cent of women hit the pathways that they're supposed to hit in gynaecological cancer, and I don't think you need much more than that to tell you that women are not being serviced by the NHS in Wales as they should be. We can tell that there's a problem. The professionals know there's a problem, the patients know there's a problem. I get that the data is important for deep analysis, but even the anecdotal stuff we've heard over the last few days speaks volumes, doesn't it? And it's qualitative and quantitative, and even if you've got a lot of data that says things are going wrong, even the small stories of people where it goes terribly wrong should be focused on as well. So I think, for me, it's that point—the missing of the pathway.

Thanks for that.

Thank you, Claire. Gareth Davies.

Thank you, Chair. Just to start, I just want to offer some comments in response to the video, if I may, Chair, just quickly. Because I worked in the NHS for 11 years on the front line, and some of those things in practice there are not things that you learn when you're training, when you're doing qualifications in terms of patient care, dignity, person-centred approach. Just because of how somebody looks, it's not how they feel, and if somebody feels that way, then there's probably a high chance that they are, you know—. And then, obviously the timing; Judith getting the diagnosis could have possibly led to having further cancers along the way that could have been nipped in the bud earlier on. You never bring in religious beliefs or personal beliefs into your practice. Care is very objective and they're within NICE guidelines, which everybody has to adhere to—whether you're a doctor or whether you're a healthcare support worker, you work within those frames and you don't bring those personal beliefs into care, whatever you do. In terms of gender bias, when does a bloke ever get called a hypochondriac or neurotic, or anything on those levels? So, I just wanted to offer those comments in response, because it was really emotive, that was, and I think it would be remiss of me, with my experience, not to give a couple of remarks in response to that, and I know that Judith is watching as well, so I just wanted to put that on the record, really.

So, anyway, questions. In terms of regional differences, then—I think, probably this is directed at Rachel—as treatment at a specialist multidisciplinary gynaecological cancer centre improves survival rates by 45 per cent, is that applicable to all women across Wales in terms of looking at regional differences and the differences between, possibly, some of the health boards as well?

This comes down to data. We just don't have the data, at the moment, to be able to look into that and say—. We need to know where women are having their surgery, what kind of follow-up treatment they are getting, what kind of access to those multidisciplinary centres they are getting and what kind of access to clinical trials—it all comes together into offering the best chance of survival. So, surgery is the treatment for ovarian cancer that has the best curative potential, so we really need to see women having that surgery in those centres, but, at the moment, we just don't have the data. We rely on anecdotal data from patients to tell us what kind of surgery they think they had, or where they thought they had it, but that's something very difficult for patients to tell us, because they've almost certainly never had ovarian cancer surgery before. So, again, it comes back to that point of information—that they don't know what 'good' should look like. Unfortunately, it does all come back to that data point, that we really need to see that data in order to be able to find out what's actually happening to people on the ground.

What, possibly, are some of the barriers to receiving that data, then? What's the—?

I think it's as Lowri outlined, we've just got huge systemic challenges in that data collection across Wales at the moment. We can talk to patients, we can talk to clinicians, but until we can get that systemic data collection barrier sorted out, we are just reliant on that kind of—

Is that the health boards, then, is it, or is it on another scale?

I would say that it's probably on both, so it's health board level and right across Wales, and we need to be able to see those comparisons—how are health boards doing, as well as that individual picture for each cancer.

I don't really have much to say in terms of the regionalisation. I think in terms of geography and is it one area of Wales, as opposed to another, I don't think that's a question—

I think, essentially, what I'm asking is if somebody's in north Wales, mid Wales, west Wales, south Wales, wherever they live, is that same access to treatment there, broadly of the same level across Wales, or are there higher rates and more successful rates in some areas, and perhaps lower in some areas where they could perhaps improve and then look at, possibly, some areas of good practice where there might be a lower skill that they could look at and say, 'Well, we can take off that and learn something and improve in our district as well'?

Across the board, from all cancers, there are going to be pockets of good practice. One of the challenges that we've got in Wales is we don't share that best practice, do we, and we keep it within our health boards. There are barriers at the moment to regional working, based on the way that our health boards are set up. So, I know that the Wales Cancer Network, in particular, are trying to break down those barriers so that we can do more things collectively across regions. We've got a massive health board in north Wales, which, in itself, needs to break barriers within its own patches, so there are huge issues. That takes leadership, culture change and things like that, which are really challenging when systems are embedded and ways of working are embedded, and, actually, you think, 'The way that I do it is better than the way my neighbour does it, and I've always done it like this, therefore, I'm never going to change'. So, it's individual and it's cultural across health boards and institutions, unfortunately. But we do need to break those barriers down, and I think there is some movement on it, but not quick enough.

In terms of on a professional level, then, what safeguards are in place, or could be better in place to protect patients against some of those issues that Judith spoke about on the video in terms of making women feel like they're well supported, and then professionals can provide safe and competent care to patients without some of those, perhaps, personal beliefs and things coming into practice, so that we can have an objective view over care, and it's working within those guidelines?

Can I just start on—? One of the points that Lowri and I have discussed is about multidisciplinary team working. From my experience, it's not very patient centred, so you don't know how you're being discussed in a multidisciplinary team. You don't know what aspects of your life they're bringing to the table that are important.

Since I originally wrote my response, I have moved to stage 4 cancer, because some cysts in my liver were ignored as just being cysts, and actually have turned out to be cancerous tumours, so I'm now waiting for chemotherapy, and I've got no record or understanding of why those weren't looked at during a multidisciplinary team meeting. And I don't want to make it about the professionals or the individuals; I think it's the pressure that lots of these people are under as well. I think Lowri and I were observing a conversation on Twitter about some MDTs having 120 cases to go through in a morning, and they're kind of saying, 'Well, we want to give every single one of them the complexity that it deserves', but how can you give every single one of those patients the complexity that it needs, to be looked at? So, I think there's something about being more patient centred in a multidisciplinary setting, but maybe having the ability for MDTs to look at different cases and take them on from each other and refer. I don't want to make it overly complicated, because I don't want to see more bureaucracy, but I also think there's a piece of work that needs to happen in patient care and how those kinds of meetings operate.

Thank you. Anything else, Gareth?

If I've got time, just to look at access to drugs as well. I use the trade name Avastin, because the official name is a little bit difficult to get my tongue around this morning. But we've heard about the delays in getting some of those drugs, and what it looks like on the ground in terms of getting access to those in a timely manner. So, how can we ensure that those innovations and progress is made in terms of maybe quickening up that process, so that women can be getting the sort of treatment they deserve—in a drug sense, anyway?

Yes. So, I'd say that things are better now in that women with ovarian cancer in Wales tend to get access fairly rapidly to new NICE recommendations, so that process from an ovarian cancer-specific perspective is working much better. There were historic problems with access, particularly on the old version of the cancer drugs fund in England, but that seems to be, at the moment—obviously, I can't say how it will go in the future—working particularly well, as does access to genomic testing. So, a lot of ovarian cancer drugs are dependent on your tumour, DNA, and that, again, seems to be working really well at the moment. But I think it's just making sure that that process continues to work well, and making sure that it's as rapid as possible. So, sometimes, we can get a delay of kind of a couple of weeks that we hear about from when NICE recommends a treatment, but generally speaking, once treatment's recommended by NICE, it's available in Wales pretty much simultaneously.

Yes.

Sorry, I do just want to caveat that. We do seem to be a little bit on the back foot in Wales in terms of adopting these new medications, so that—. You know, you think about Avastin now and you think about—. I don't know if people remember Annie Mulholland, who was just a brilliant advocate. She had ovarian cancer and she moved to England to access Avastin. And here we are—how many years later; nearly 10 years later, and only now is it front-line here in Wales.

So, we've got some challenges, and I think as well, you pull that back a little bit, not just to the drug, but access to clinical trials as well. We've got some real challenges in terms of being able to access clinical trials for the big drugs companies to come here to work with us, for us to get the numbers, to actually enable people to access those trials as well. So, I think in terms of access to new treatments—and they are becoming more complex, they are becoming more expensive—we need to come up with new ways of being innovative around ensuring that our patients can access those medications, and actually approving them in line with England, Scotland, Northern Ireland. Why are we waiting even months, when we should be having those medications available to our patients here in Wales?

Can I add a very quick—? Clinical trials access is something we found—we asked women about it in Wales in 2016 and then again in 2022—we found a 10 per cent drop in women being asked if they'd like to join a clinical trial, so that was only at 25 per cent. The drugs that we just talked about are available for the most common types of ovarian cancer. We do have many rarer subsets of tumours and there are rarer gynaecological cancers like vulval and vaginal where clinical trials can often be your only way of accessing a treatment option. So, yes, just to echo Lowri’s point, that for some women with some cancers, clinical trials are potentially your only treatment option, which is why they’re so vital.

That's my position at the moment. I have a rare cancer, and because research hasn't happened on this cancer enough, there aren't any effective chemotherapies, so my only option now, hopefully, is to get a clinical trial, and they are hard to come by. I'm working with a great oncologist at Velindre, and she was funded to start an immunotherapy trial, but she can't get the pharmaceutical companies to give her the drugs that she needs, because they can't see the eventual profit in a rare cancer. So, my only hope is that this immunotherapy trial happens, and it's being prevented. I don't think that's a Wales-only problem. So, yes, I'd reiterate all of those points.

On the point of genetic testing as well, my genetic testing was initiated in December. We're now in May. I'm starting chemotherapy in two weeks, and my genetic testing hasn't come back yet, so I’m going in for chemotherapy that might not be effective because they don't actually know what they're targeting. But I can't afford to lose any more time now, so that's the situation. It's just not good enough.

Thanks, Gareth. You started, Lowri, by saying we're on the back foot in Wales. Why is that? What needs to change? Just ever so briefly.

Gosh, I mean, where do you start? I’ve been working in cancer policy now for 10 years, and talking about the new IT system, the business case for that was developed nearly 10 years ago, and we're still only at the first stage of implementing that, let alone rolling that out across Wales, to the point that some health boards have gone and done their own thing because they were waiting too long, and now we've got this mishmash of IT systems that we need to align, let alone how we get our health professionals to input the data so that we can pull the data out so it's all accurate so that we can perform all these audits, you know? So, just in terms of data, we’re on the back foot.

Some of our diagnostics, where we were begging—. We’ve got the Wales Cancer Network really pushing to do regional working in terms of diagnostics, not just talking gynae, and it's only now that—. Pre pandemic, this should have happened. We're still not at a point where our diagnostics, our radiology, our pathology, is up to scratch, and we can’t blame COVID for that. We knew about these problems. We've had analyses about seeing the trajectory of numbers coming into the system. We've got an older population—that’s fantastic that people are living longer. That does mean that we're going to see more cancers. One in two of us are going to get cancer. We should have been preparing for this 10 or 15 years ago, and now we're on the back foot even more so because of COVID, and here we are. We're seeing things like this happen to Judith, and my dear friend, Claire, you know, who shouldn't be where she is at the moment. And here we are in front of you—. You were saying you've had women contacting you since you've spoken out, so this is not an isolated incident.

And I think, again—. Sorry to get on my hobby-horse around this, but we have got—. There is an expectation within clinicians that some patients will fall off. Ninety-five per cent of patients get a good service; 5 per cent won’t. That 5 per cent, or whatever that number is, is increasing, and we’re seeing more and more and more people fall into this margin of acceptability of what we will accept as a nation in terms of who is going to fall by the wayside. That's creeping. More and more people are falling into that, and we need to get to grips with it. We've known about it for a long time. So, now we're on the back foot, there's no money, we've got no workforce, and here we are in this terrible situation, so please make some great recommendations.

We will. Go on, Rhun, yes.

Just very quickly, is that number growing because there are more patients and therefore the 5 per cent is getting greater, or is there a higher and higher percentage of people that are falling by the wayside?

I say 5 per cent, Rhun—I’m plucking that out. I'm taking it from the cancer patient experience survey data, which says that 92 per cent of people are satisfied, and now it's down to 87 per cent, et cetera, et cetera. You will hear from the Welsh Government that more people are being seen than ever before, and we can't deny that. They're working flat out, but with less workforce, less money, less resources, less equipment. But we should have been planning for that 10 or 15 years ago, and now we're at this crisis point. So, the numbers are bigger. We are pushing people through the system. And we will hear that we're telling x amount of people every day that they haven't got cancer. Well, that's brilliant that we're telling those people, but for those who have got cancer, we need to make sure that we've got those systems in place for them as well.

Thanks, Rhun. Jack Sargeant.

Diolch, Chair. I'm going to try and refrain from talking about data, because it's increasingly frustrating, but I do want to perhaps make, with permission, Chair, one suggestion on recommendations, because the word keeps coming back to me—and I hope it's acceptable to say this—but what you said in your video two weeks ago of 'medical gaslighting', I've written that down twice today, one during the video from Judith, at the start of today's session. I think, as a committee, we need to try and make some recommendations to remove from the system some of the things that probably allow that to happen, rather than the GPs or medical professionals wanting to do that. From the way I'm seeing things, the system is allowing for that to happen and we need to address that.

So, I'll refrain from talking about data, but in terms of support for patients, both in early diagnostic—. We held a mental health inequalities debate last week, I'm sure you're aware. That diagnosis is a significant trauma or impact to the patient. Is there stuff that could be—? And for their families as well. Are there recommendations that need to be made there? So, that's my first question. My second question probably reflects Judith's experience during a stay at hospital, so her journey through hospital when she's having treatment, when she's having care, and particularly where—forgive me—a nurse or whoever it was didn't pull the curtain around her. Care needs to be respectful of women in a dignified way—to me, that's clearly not. Is that an isolated incident and does this committee need to make some recommendations behind that too? And I'm conscious of time, so just those two questions, perhaps. I'm not sure who—.

In terms of the trauma of being diagnosed, I don't know that there's any good way to tell someone that news. For me, that's the most evocative bit, because whenever I think about I start crying, and I know you'll all forgive me for that. But you have an hour-long meeting and then you're sent away to deal with that news without, like, 'Are you resilient, are you not resilient, do you have mental health problems?' You drive away from the hospital and you're like, 'Oh, okay, well, I just somehow have to find the resilience and personal skills to do this'. Thankfully, despite being emotional, I have a lot of resilience. This week, for example—. One of your first phone calls to help you deal, when you've been given a stage 4 diagnosis, is that a hospice gets in touch with you. So, I've been called by City Hospice this week to plan my end of life. That's just the most confronting thing in the world. I get that it comes from a really good place and that there are professionals out there who want to look after you in that period of your life, but you have that phone call and you're just sat in your living room. How do you deal with that? I just think, again, about the amount of people who don't have personal resilience or don't have resources or don't have family who can really wrap around them, because it's devastating and it's isolating.

You do have charities, of course, but you have to want to have that discussion as well. Where do you even begin saying to someone, 'My life's ending and I have to plan for that'. And I have to say, I've spoken to Tenovus and Macmillan, and I've had some really good interventions from psychologists and psychiatrists, which have been useful, but even those are weeks and months apart from each other. And I did joke that I'd probably be dead before I got to my next appointment; I won't be, but it does feel like that at times. The gravity of what you have to deal with needs constant contact, and you don't have access to that contact. You have a nurse, they're fabulous; you have a psychiatrist, they're great; you have a counsellor, great, but it's infrequent and difficult to access and really confronting to do that as well, and you definitely need much more personalised support. And I have to say, it's often the third sector that's relied on to do that, but then the third sector have cuts and cuts and cuts and cuts and they're pitching their services as cheaply as possible, and that's not how these services should be built.

Claire, thank you. I think you're simply incredible, quite frankly. For you to be here today is testament to you. To do this, it's amazing. And I think there's a clear recommendation from that.

Picking up on my other point, Rachel, I saw you nodding when I said is this an isolated incident, particularly in care, and dignified care, and respectful care for women. I seemed to get the suggestion from your agreement in nodding that it’s not an isolated incident for Judith.

No, it's not, and that's a real, sad, unfortunate truth, particularly for women with ovarian cancer who are diagnosed in A&E. That's why that primary care diagnosis is so important. It's when they end up in so much pain and so much discomfort, and potentially haven't been listened to, and they end up in A&E, and then you can end up being diagnosed on a ward with a curtain pulled round the bed. As much as there's no such thing as a good diagnosis of cancer, you can be given the best diagnosis to help you with that next step. It's exactly what Claire said—when we talk to women, a clinical nurse specialist should be present when you're diagnosed, because this is going to be the person that's going to help you and be your point of contact, and if they're not in the room when you're diagnosed, that makes life a lot harder.

Just one final question, because I know we're pressed. The CNS, then—do we have any worries or concerns about the future of that?

Yes.

Because—and I will talk about data—we don't even know how many there are in Wales. Is that correct?

We don't know how many there are.

You should know how many there are.

They are hugely under pressure, and when we've talked across the UK they tell us they don't think they've got enough time to provide for women's medical needs, let alone the support needs. So you've got a workforce that's hugely under pressure. We know we don't have enough of them. We don't know exactly how many there are, but we know that we don't have enough of them, I think it's fair to say, and particularly in gynae. I know that you had Sarah here a couple of weeks ago. They are a workforce that is approaching retirement age, and we definitely don't have the younger generation of CNSs coming in underneath them.

Thank you. Thank you, Chair.

What do we know about the incidence or recurrence of metastatic cancers in terms of support for women and their families?

We talked about this yesterday, didn't we?

We did, didn't we? Yes. So, for ovarian cancer, around 70 per cent will recur, so that's a big number, and all the women we work with who have recurrence will tell us that is huge—that's worse than having your first diagnosis, the impact of that. But again—and I'm going to have to say the 'data' word again—we don't have the data. We don't know what happens. For these women in the pathways, we know that there are treatments available, but I think particularly in terms of support, the support is just not there in the same way when women experience a recurrence as it was with the first line. I think there can be a mindset of, 'Well, you've done this before. It's a very similar treatment pathway. You know what you're doing. You probably don't need as much support as somebody in that first-line treatment', and that is just simply not the case.

Mine has spread, so I've got it in my liver, my lungs and my bones now, and that's a very different beast to deal with than an original gynae diagnosis. A gynae diagnosis almost seemed good, because I was like, 'There's an organ, I don't have to have it, it can go', but that's not the same for where it is now, and that's a different kind of experience altogether. I was going to make a point about the satisfaction, or the statistics the NHS are using to talk about satisfaction with gynaecological services. When are those women actually being asked about their levels of satisfaction? Because in December 2022 I probably would have told you I was over the moon to be leaving the hospital that day with a stage 1A diagnosis. If you came back to me right now, I'd tell you that my satisfaction is on the floor and I don't think you can talk about that kind of statistic as being an indicator of how women's experiences are, because they do frequently recur across the course of a lifetime, and I think we need more disaggregation of what that data means and when it's collected before we can say that's an actual picture of how women feel about their experiences, to talk about data again.

Jack, did you want to come in?

Is the data simply not being recorded, or is it not being collated and analysed? Because surely some part of the patient journey is being recorded.

Some parts of it are. Is it being recorded in the right level of detail? We'll need to pull it off and analyse it. So, when we particularly talk about stage data, it's not really acceptable to have 'stage not known'. We can make a reasonable conclusion about what 'stage not known' means. It generally probably means it's a late stage, but there are definitely gaps in the data.

So, even if it is being recorded, it's still not to the level where we want it to be.

I think as well within gynae the pathways are all combined, so we've got very different cancers, and there are nuances within those cancer sites, and therefore how can you—. We haven't talked much about cervical cancer; it's a very different beast to ovarian cancer or uterine cancer, or even a sarcoma of the uterus. So, how can you even start to think—? You wouldn't put testicular cancer in with prostate cancer, would you? But that's the kind of situation that we're at. We need to disaggregate that and actually do that work, which is why, to be fair, there is a focus on gynaecological cancers within the ministerial priorities. She has highlighted that it is one of the ones, and that's because of the challenge with waiting times—the low 30s in terms of waiting times, and worse in certain health board areas.

Thank you. We're five minutes over time, but I just want to capture this morning's session. Given the video evidence that was before us two weeks ago and today, and everything that you've outlined to us today, tell me, in tweet-sized bullet points, okay, so quick, one-liners, why—why is it happening?

For me, it's the point that we raised with Rhun. Across the pathway, right through from awareness, prevention, primary diagnosis, diagnostics, reading of the diagnostics through to treatment and beyond, and emotional support—all of that—there are issues all along the pathway. So, it's not one thing that we need to look at; it's a systematic overhaul of what are the challenges here. We've seen them play out in Judith's story, we've seen them play out in Claire's story. For me—it's not tweet sized; I'm 140 characters over—there is something about the pathway work that the Wales Cancer Network is doing, the disaggregation of the data, and that dignity and respect, which absolutely seems to be slipping, because of pressures within the—.

Specifically, what needs to change? I'm thinking about our recommendations now. What needs to change? What would be your key, bullet-point recommendations?

For every single individual who works within that health board and has a responsibility along that pathway to take a hard look at themselves, take a deep breath, and actually think, 'Am I doing what I was taught to do at university?', or whatever, and, 'Am I performing?' When you're knackered and exhausted, you've still got a person in front of you whose life is at risk. It's to read that scan, to take that forward, to make that recommendation and not just think, 'Oh well, some people are going to slip through the net.' That, to me, is totally unacceptable. We need to 100 per cent catch everybody.

Rachel, Claire, any last thoughts from you?

Can I add a sub-tweet to Lowri's? Can I agree with all of that?

A thread—we've got a thread. [Laughter.]

There's no such thing as a sub-tweet, but go on. [Laughter.]

Yes, we're doing a thread here. I think something we've not touched on too much today but I know has come from your previous sessions is awareness. Are we equipping women across Wales with the knowledge of the symptoms? But also almost it's giving them permission to go to their GP, and go to their GP repeatedly, and to say, 'These are things that are worth getting checked out. You know your body best.' That is such an important message. We're not in a perfect world where everyone will remember all the symptoms of all the cancers, but I think there's something around that messaging. Can we get the messaging out there, that, 'You know your body best. If something is wrong, you can go to your GP, and your GP should be taking it seriously'?

I'd agree to a degree, but, if you go multiple times and you're turned away multiple times, you lose the will to keep going. So, my No. 1 recommendation would be that primary care are educated and are told, 'You rule cancer out before you rule anything else in, as your No. 1 priority.' Early diagnosis would make a complete difference. I've spoken to my consultant at length about the pressures the NHS are under, and my only thing is that if I had been diagnosed early I would now not be having chemotherapy, two surgeries, radiotherapy, blah, blah, blah. The other one is just research—serious research—and clinical trials for women's cancers. Wales should and could become a hub for that. You've got Velindre, you've got Cardiff University, you've got UHW. You've got some really fabulous professionals and some really brilliant institutions, and I can't see any reason why these cancers can't be researched, and not eliminated, but markedly improved for women in Wales.

Thank you. Thank you for a very powerful session, and thanks again to all who gave video evidence. That is more powerful than any written evidence or anything anyone who can sit in front of us can provide. So, thank you to the bravery of everyone who took part in the evidence sessions, talking about their own experiences.

We'll take a 10-minute break and we'll be back at 10:50.