Cynulliad Cenedlaethol Cymru

Croeso, bawb. Welcome to the Health and Social Care Committee this morning. As always, this meeting operates bilingually. Under item 1, there are no apologies this morning, and if there are any declarations of interest, please say now.

In that case, I move to item 2, which is our third evidence session in regard to our inquiry on gynaecological cancers. We'll be hearing from our panel today and they'll give us evidence. This morning we'll start with a 20-minute video that will detail an interview with Judith Rowlands. Before I do so, perhaps I could just ask the panel to introduce themselves and who they represent.

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.

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.

Welcome back to the Health and Social Care Committee. We move to our next evidence session, where we've got witnesses from the Royal College of General Practitioners and the British Islamic Medical Association. So, if I could ask our witnesses just to introduce themselves for the public record. 

Good morning. I'm Shanti Karupiah, I'm a GP from Swansea and I'm here representing RCGP Wales, and I'm their current vice-chair.

And Dr Ali.

Hi, everyone. I'm Zohra Ali, I'm a consultant medical oncologist based in London, and I'm here representing the British Islamic Medical Association, with whom I'm the cancer team senior adviser.

Thank you ever so much for being with us today. Diolch yn fawr iawn. Joyce Watson.

Good morning. I see in the written evidence that the Royal College of General Practitioners say that women don't often realise that they may be presenting with symptoms of a gynaecological cancer. So, what action is needed to increase symptom awareness and understanding of the gynaecological cancers among the public, and also, importantly, to encourage women to act on that knowledge and to take up cervical screening, human papillomavirus vaccination, or any other help that they would require?

Thank you. These are very important questions and it's very timely that we are discussing this. I think, when you speak to the population, women, as such, are much more aware of the cervical smear, cervical screening, rather than other gynaecological cancers, if you will. I'm just going to remove this. So, I think what is really important is creating an awareness and having an easy conversation, if you will, amongst each other and with practitioners. As you can see, Cervical Screening Wales have been quite successful, I would say, because they have been creating a lot of awareness; they're doing a lot of personal invitations and if the patient doesn't come for an appointment, they follow it up.

There are also a lot of changes happening, which, from what we hear from the patient, have been quite confusing. Now, in Wales, since January last year, the every three years that women were being invited for cervical smear screening has now been increased to five years. But that's not the case in England; they're yet to adopt it. Scotland adopted this a few years ago. So, we want to make sure that there's a dialogue about this and that there's an increased awareness about this and the reason why it's important to have cervical smear screening. We also are encouraging young female adults of school-going age to have the HPV vaccine—that, again, is an important dialogue to have, to encourage not just the patient but their parents to see why it's important to introduce this vaccine to their kids. Because there is, again, a lot of confusion. 

Now, with regard to the question of why there is a lack of awareness, I think, again, it's a topic that's very personal; women find it very vulnerable to talk about it, firstly. So, we have to acknowledge that, when we see patients in our medical setting, we are seeing them in their most vulnerable state. It's important, and we always encourage, to have an open dialogue and to listen; listening and communication skills are something that we implement in our GP training. Reading through a lot of the documents at the moment, it is very distressing to hear. All you need is one negative experience when you're opening up to have this dialogue. If you're shut down or made to feel that it's not serious, made to feel that it's not important, you will just lose the patient. This is something that we are having active dialogue on. We also realise, as active GPs working in primary care, that the service provision and also the referral processes vary locally.

Most GPs are trained to identify signs and symptoms of potential cancer, if you will. Now, cancer symptoms can mimic other common symptoms. So, that's the reason why we encourage patients to come and speak to the professional. These days, people do use social media, they use the internet, to find out about their symptoms first and then they come to have the dialogue. That's fine too, because you want to make sure that they are empowering themselves firstly, to find out more about what they have, and so they can have the right dialogue. We encourage that. But when they come to see us, we try to address what is the concern at that point in time, what are the symptoms that they're concerned about, and then try to invite conversation. Sometimes, we are so busy in modern days that we do not even realise the symptoms that we have, especially women. We go through various changes in our lives, from puberty to—the years between 40 and 50 are quite crucial because a lot of life events are happening, and then you're in the perimenopausal phase and then the postmenopausal phase. These are conversations that you need to have. At the moment, menopause treatment is very actively being discussed. In the same way, we need to have dialogue in terms of gynae cancers and not just in terms of cervical, but others as well. Like I mentioned at the start, symptoms mimic other common symptoms, so it's important to have this conversation. 

Okay. And, Dr Ali, do you want to add anything?

I think some of the points that I'd like to make have already been touched upon, but I think it's a multifaceted issue. I think that part of the issue is listening to the women themselves, which has been touched upon already. Much of the feedback that we receive is that women often don't feel listened to when they are experiencing these symptoms. They're not taken seriously. It's the typical heart-sink moment of a healthcare professional when they see Mrs Bibi on their list who typically presents with her all-over body pain, and before she's even entered the room there's a level of disengagement because they feel that it'll be the same thing again. So, perhaps, even if symptoms are being reported, they aren't necessarily being listened to, and, as was alluded to earlier, that can result in disillusionment or disconnection with the healthcare professional.

There is a significant issue with regard to symptom awareness. Knowledge is lacking amongst minority communities. The significance of symptoms such as postmenopausal bleeding or post-coital bleeding is not necessarily there and, to a degree, is normalised because the individual is perhaps less keen to report these symptoms, due to a level of embarrassment. There are issues such as language barriers and a need for, for example, transportation to allow these women to access healthcare professionals. So, it's more than just a knowledge thing.

There are also the issues relating to cancer taboo, I think, within these communities. It's something that people are disinclined to talk about, disinclined to report. Referring to the cervical cancer aspect of things, the association with HPV and that being a sexually transmitted disease arguably results in additional concerns, for example, people are worried that if they are screened and found to be HPV positive, concerns about their sexual promiscuity could be raised. And there are other misguided beliefs, such as, you know, that if they're in a monogamous relationship that will automatically prevent them from developing some of these illnesses.

So, yes, it's important to educate people, it's important to provide them with the facts, but doing so in a way that—. It's almost that the messenger is almost as important as the message that we're trying to deliver. So, it needs to be delivered in, for example, languages that are accessible for these women, that they are able to understand independently. There is a need, potentially, because of this inherent distrust of healthcare services and medical professionals, to be using sort of credible organisations, such as BIMA, where you have healthcare professionals who are equipped to deliver this message in collaboration with local authorities, local services, who have that established relationship with communities, who are known to be credible, who have a reputation, and links with scholarly organisations, such as the Muslim Council of Britain, who are well respected within our community, and wider national, international organisations who we are well used to working with, and it adds credibility and, I guess, a believability on the part of the communities—

Dr Ali, can I—? Sorry.

—that respected scholars and professionals are also promoting this message. 

Dr Ali, sorry, I'm just conscious of time. Do you have any specific questions for either of the witnesses?

You talked about and you've outlined those who might be able to help and to advise, but are there any specific issues that we need to know about—a reluctance, perhaps, to seek help? What can be done to address that in terms of ensuring women and girls from black, Asian and minority ethnic groups, that they need to understand themselves—? Are there any particular barriers, because we've had evidence that suggests there might be?

Dr Ali.

Yes. So, I think there are specific barriers. Part of it is the knowledge issue, part of it is the concern regarding exposure of modesty, which many women are concerned about. Sorry, I've lost my train of thought.

Some of it is access, as I've mentioned, so providing women with translators, for example, that could help them with language issues that they may be experiencing, and improving their understanding in that way with information dissemination would be useful. Certainly, outreach programmes linked to specific community organisations can often help in delivery of that information, and engaging with those specific groups and encouraging them to attend. And certainly, our experience has been that, in doing so, there is better uptake when you have targeted programmes aimed at these individuals.

Do you have any further questions, Joyce, for Dr Ali?

No. I want to ask about the experience in Swansea, because you work in Swansea, and how in Swansea you deal with all the different groups, ethnic groups, and are you content that you have the reach into those communities, or is there work that needs to be done?

I think, as someone who comes from an ethnic minority background, there needs to be better understanding about the cultural belief and practice, so that we are better equipped how to tackle it. Otherwise, we are not in a win-win situation here. And the other important thing is ensuring that we give them time, because language is an issue, so the use of LanguageLine is important, but to use LanguageLine, you need time, and time is what we're struggling with in primary care. So, there's a lot of work that needs to be done, and I again agree with Dr Ali about all the points she mentioned.

The other thing in Swansea I wanted to highlight is we've got something called a rapid diagnostic centre in Neath Port Talbot. They have been working for the last five years, and we tend to refer patients with any vague symptoms. When I say 'vague', it's not the classical red flags; it's anything from extreme tiredness to just a symptom that doesn't fit into the right pathway of referrals that's existing. And GPs refer into this centre, and they run two half-day clinics per week. They tend to see patients within one week of GP referral, and the patients tend to get an answer within that same day or the next day, so they can decide exactly whether they are needed to be referred to an existing pathway, or is it a new diagnosis? If so, they will send them away to the right consultant. If the test comes back—because they offer a blood test and imaging test as well—and if it's normal, it's reassuring the patient: 'We have done all this—there is nothing to worry about.' It's also reassuring to the GP that we're dealing with something benign and not something cancerous, if you will. So, that rapid diagnostic centre has been quite successful, so much so that the colorectal team, the bowel cancer team, and the ENT team, where they deal with neck cancer, have actually started to pilot their services through this same centre. I think it's something worth while to look into because, at the end of the day, the faster the diagnosis, the quicker we can come to a decision whether that diagnosis needs urgent treatment, and if we can provide timely treatment, the outcome is positive. The healthcare experience for the patient is brilliant. And if it turns out to be negative, we are there to provide them the support in terms of palliative care. I think this is something that we can actually look into.

Are you content that the understanding in general practice of the symptoms of the different gynaecological cancers is there, that they are aware, particularly when we're talking about ovarian cancer, for example, where, as you said in your opening statement, some symptoms mimic other symptoms?

I think, again, increasing awareness by education and making sure we have a campaign about this is important for both patients and doctors. Sometimes the symptoms that ovarian cancer may present are so vague. Something like bloating, or even feeling full quite early, or altered bowel symptoms, are symptoms that patients may think are just that they're having one of those days, they're just not regular and take some laxatives, but that's not the case. That's why it's really important to seek help in a timely manner.

All of us are guilty of not putting ourselves first, because we've got so many other responsibilities. I think it's really important that we pay attention to what our body is saying—yes, we are busy, we've got a lot of responsibility—and then seek the assistance from the health professional. If you feel that you are not listened to, speak to them again. At the end of the day, we need to empower patients, in that we have responsibility for our health, our body, our life. As GPs, we always tell patients, 'If you have the symptoms now and we can't find anything worrying at this stage, when you walk out of our room, remember you have that ability to call us back, to ring us back,' because when they leave the room we have no idea what's happening to them. The symptom may progress, it may stay the same, or get better. So, if it's not getting better and it's getting worse, contact us again.

Okay. Thank you, Joyce. Sarah Murphy.

Thank you very much, and thank you, both, for being here today. To follow on from what you were just saying, we've heard through our evidence that women with gynaecological cancer symptoms can have their symptoms dismissed or ignored by healthcare professionals because, potentially, of a gender bias. Do you think that that's true? Do you think that's accurate? Is that what you're seeing?

In my personal experience, I have never experienced gender bias in my practice. I can't say it's not happening, because somebody else is reporting it. If somebody's reporting it, it's something that we need to look into, and it's really, really important. Again, like I mentioned, it's disheartening. When patients, whatever the symptom, come to see a medical professional, they're actually at their most vulnerable. They're opening up and talking about something so personal that they otherwise wouldn't do. It's important that we acknowledge that, listen, take on board what they're saying and see how we can address that. It may be an actual physical symptom, or it could be something else. Whatever it is, they have come to you. I think that's really important, to use the information that's right in front of you, because the patient is in front of you, and you go by the information that's given to you. So, I think it's important that we address the symptoms they're mentioning, and sometimes the patient may not even say what they're actually having, because they may not realise that that's not actually the problem—actually it's something else. This is where training and trying to identify the issue that they're coming with is important, and at the same time asking wider questions. I think that's important.

Thank you very much. Dr Ali, did you want to comment on whether or not you think that there is potentially a gender bias that is happening here that is impacting the care that women receive?

I'm not sure it's a specific gender bias; obviously, we are talking about gynaecological issues here. I think there are, obviously, instances of people struggling to be heard, and having difficulty accessing the service, but it's perhaps not necessarily as simple as that just being because they're women. I think, as has been alluded to, there are complexities in the diagnostic pathway, and there's a lot more that—[Inaudible.]—learning in order to listen to these women more effectively in a more holistic manner, and so addressing their physical symptoms but also any psychological or mental health connotations that result from their symptoms or their diagnoses relating to cancers. 

I think it's also about wider enablement, so helping them to be more empowered to overcome any of these biases that they feel they may be experiencing. Certainly, some of our communities are, for example, traditionally quite patriarchal. And as was alluded to, it's about allowing these women to appreciate that their health is important, and as important as some of their other duties, and also educating the menfolk to recognise this, and—'allow' I suppose is the wrong word—enable their womenfolk to look after their health in a better way, and seek help more effectively and promptly. 

Thank you. We heard from one patient that,

'I was made to feel like I was being neurotic, and I was met with indifference at every phone call and appointment.'

So, as you said, women should call back and they should update you, but we're hearing that that's been extremely difficult. I believe one person told us they called 72 times in a few days just to try and get an update on where their treatment was. So, do you think that the extent to which women presenting in A&E and being diagnosed with a gynaecological cancer is the result of failings in primary care to listen and take seriously the concerns of women?

I think it's multifactorial. We cannot be disillusioned with the fact that we are not under pressure. GPs and secondary care doctors have been working continuously before the pandemic, and during the pandemic, and it has had a huge impact. But that does not mean that all of us have stopped looking at patients; we are. And the mindset of reaching out or seeking medical help has also changed. And we always tell the patient, 'Any which way, at this moment, you can get assistance, go for it—your GP, out-of-hours, 111, even A&E, but A&E should be your last thing; it's more like an emergency or life and death situation.' I'm of the belief that if you need something to be done for your health, you go and seek the help wherever you can. It's difficult. I'm not going to sugar-coat and say that things are easy at the moment. It's hard, but we all are working at our level best, because physical exhaustion, burn-out, it's real, and that can lead to decision fatigue. 

Yes, I understand, but can you understand that, from the evidence that we're hearing, the patients are doing exactly what you're saying—they are trying to reach out, they are trying to empower themselves, they are trying to do all the things that you're saying, and we're still hearing cases where this isn't working? And, as I said, the evidence is showing that women are being diagnosed at A&E because they're not getting that support in primary care—

That is alarming. 

—and so it's putting it on the patient.

I'll ask my final question, then. So, Dr Ali, you mentioned this earlier on: you said that it is more than just the knowledge. So, do you think GPs, then, are clinically curious enough when it comes to gynaecological cancers and women's health issues? Would embedding relationship-based care, so longer consultations, as set out in the report 'Fit for the Future', help, do you think? And, as you said, I know GPs at the moment, and clinicians, are burnt out and they are exhausted. Do you think more time needs to be given, then, for these appointments for women? I'll bring you in first, if that's okay, Dr Ali, this time.

Yes, I think it is quite a challenging situation, as our colleague has alluded to. Obviously, GPs are overwhelmed at the moment, they're understaffed, under-resourced, and, within the defined consultation time, there's only so much that can be achieved. And we hear very similar stories about people repeatedly presenting and facing challenges, not being listened to. But, I guess this cohort of women, perhaps, requires more intervention and more time than, perhaps, a standard GP consultation can afford them, and it may be something that needs to be looked into, in terms of commissioning services, as to whether there are additional roles that are funded specifically for these kinds of educational or outreach activities, to try and improve symptom awareness, to try and improve engagement with the communities that are wanting to be targeted. So, it's almost a separate activity to the run-of-the-mill clinic work that the GPs are being required to do, because I think it may actually be a big ask of them, within their routine clinic, to be covering this kind of thing.

Thank you very much. And, finally, if you wanted to—

Yes, I agree. It's not just a tick-box activity at all. We're actually dealing with a human and their health and their life and their wider family, and I think time is very important. None of us want to be rushed; we want to give them ample time. We want to heal them. It may not be just that problem, there could be other external factors that are also affecting them, so if we can change and have active dialogue about how we can achieve this—. Improving retention and recruitment and workforce is so important. People are leaving in droves.

We've heard evidence of this as well. Thank you very much. Thank you, both, and thank you, Chair.

Thank you, Sarah. The next set of questions, I think from Gareth Davies, are going to be predominantly pointed at Dr Karupiah, so Dr Ali may have a bit of a rest for this next session. Gareth Davies.

Thank you, Chair. Good morning, thanks for joining us today. Just to start, what's your understanding of why women with gynaecological cancer symptoms are being misdiagnosed with irritable bowel syndrome? We've taken a relative amount of evidence over this issue and, personally, I try and put my mind in that situation and think, 'Is it because, as humans, generally, we're quite glass-is-half-full approach, and we don't like to think that things, sometimes, are as bad as what they can seem on the face of things?' Do you think some of that comes into play? And what plays in that sequence of events in perhaps some of those misdiagnoses and why that happens? Is it because we naturally like to think that things might not be as bad as they are, and that's like a preliminary diagnosis of a particular issue? Or do you think it is a genuine misdiagnosis and this is happening on a big scale?

That's a long question. How do I break it down? Firstly, the presentation is important. Like I mentioned, the symptom does mimic other common symptoms, so it's easily missed if you don't have the time to think about it. And the other thing is, when patients and doctors meet for a consultation, it's a shared plan. We give our opinion, suggestion, and we tell the patient to come back to us to have a follow-up if the symptom doesn't go away. And usually—at least I tend to practice this—I discuss the potential of this problem, and the commonest thing is calmness. We tend to make sure—. If they come in with increased frequency of urine, we say, 'Okay, it's possibly a urine infection. Let's get a urine dipstick test done and everything'. If it's a urine symptom, we give the appropriate treatment, and we say, 'If it doesn't resolve, please contact us again'. That contact is important, that updates us as to whether what we have discussed and the treatment we have given has worked. If it hasn't worked, we need to know so that we can actually rethink, cycle back to see, from the start again, have we missed anything. That communication, that relationship is very important—the doctor-patient relationship. So, I think that is really important, and that needs to be encouraged.

The nature of your answer dictates that there's a clear pathway there, and that there are those systems in place. So, why is it happening then? Why is it happening? Because, if there are those clinical pathways in place to capture all of them, why are we sat here and asking these questions?

You're asking the right question. The thing is, awareness is important, and this belief that, 'Oh, nothing bad will happen to me' needs to go, and we need to make sure that it's not a blame game here; we want to do the best for the patient and for the patient to be able to seek help appropriately. Seeking timely treatment is important, and again, to highlight the fact that, if the symptom doesn't resolve, please seek appropriate help in a timely manner. And again, I think this is a dialogue we need to have.

From your answers, you seem, and quite rightly so in some cases, to be putting a lot of emphasis on the patient here, but, obviously, patients aren't medically trained, are they? And, like I say again, we're a glass half full generally, naturally; we like to think that things are okay or will be fine. But sometimes, that's where that professionalism comes into play. I can mention here that Cancer Research UK say that there's poor GP awareness in the use of the National Institute for Health and Care Excellence guidelines, and that's statistical and what's in front of us. So, with that in mind, then, what can we be doing better to capture some of these things?

I think, again, increasing the awareness both ways, increasing the education and information about gynae symptoms and signs, to patients, and also increasing awareness with the health professionals as well, that patients are feeling that their symptoms are not being addressed. We need feedback; feedback like this is important. That will help us to improve our service better. At the end of the day, the core of our service is patient centred. We want to make sure that we are keeping their health, their well-being and their safety at the heart of it.

Yes. And, just finally, if I may. The Welsh NHS Confederation referred to the 'C the Signs' initiative that aims—. Do you support that and how effective do you think that is in playing its role in diagnosing some of these problems? I assume that you're aware of that initiative from the NHS confederation, so, what's your take on that? Do you think that's an effective programme to be implemented?

I think any initiative is good if it's going to bring about positive change. That's important. But, if it's not working, we have to address that. I know we see a lot of initiatives coming and going and, again, to highlight what Dr Ali mentioned, information is power, knowledge is power. We have to empower our women patients with the knowledge and the knowledge that they need to approach any of the health professionals, if they have any concerns, no matter how small, and never feel that they can't. And I think, big or small, everything is important. Like I say, sometimes, they even forget that they have a family history of something that's important that needs to be acknowledged, and when they come for a consultation, when we have the time to have all this dialogue, we actually encourage them to think about family health, and they're able to inform us better that way.

Thank you.

Thank you. Rhun ap Iorwerth.

Thank you. A couple of questions about speeding up the diagnosis process. I think, Dr Karupiah, you have answered and given your thoughts on rapid diagnostic centres. If I could perhaps ask you, Dr Ali, your thoughts on whether that's the key answer, to roll out rapid diagnostic centres where people can be referred to and get that diagnosis from a team of experts as quickly as possible.

So, the short answer to that would be, 'yes'. I think that would certainly help in the diagnostic delays that we see. But also, just going back to some of the conversation that you've just had, I think there is an issue in terms of the demographics of cancer diseases is changing, and, certainly, in a primary care setting, there needs to be a greater awareness and appreciation that a 30-year-old who's presenting with these abdominal symptoms, who you previously may not have considered cancer for, may actually have cancer, and that needs to be part of the differential, which, perhaps, is not commonly the case in primary care.

But then, thereafter, as you say, there can be quite a protracted and prolonged route to getting the appropriate investigations done, particularly if people aren't being referred down the two-week pathway because they have vague symptoms, as has been alluded to earlier. So, akin to how the rapid diagnostic breast services have been set up, where women have this one-stop area where they can come, have their scans done and be examined, and any additional tests, I think, certainly, rapid diagnostic routes would have a useful and potentially a crucial role in speeding up that diagnostic pathway.

Okay. Thanks for that. Let's look for another shortcut, then. It has been suggested to us, by Cancer Research UK, and the point was made by a number of charities to us: why not encourage and promote self-referral? Because some people will be thinking that they have cancer and, in some cases, the symptoms are pretty clear, it's not the case that it's always vague symptoms. So, where do you stand—I'll come to Dr Karupiah first of all—on either self-referral or perhaps referral from somebody other than a GP, say, a pharmacy?

I think self-referral has its place—not for all things—and this is where triaging comes in, because, yes, they have a concern, but at the same time, the person they're referring themselves to will want to triage the symptom that they have concern about. And by that, they're able to weed out whether it's something that, yes, it needs urgent investigation, blood tests, and so forth, or it's something that, no, it's not urgent, they need more information on. So, it has its own role. I think this is something that they're having a conversation about in a variety of places, not just Wales but even in England. But it's something that we can actually think about—that's how I would answer that.

Okay. Dr Ali?

Yes, I would agree. I think there is a role for self-referral, but it would have to be carefully triaged, because, otherwise, there's a risk that any self-service that you set up is overwhelmed, and then you're back to creating the same delays that we've been trying to avoid in the first place, where patients who are, perhaps, the worried well are overwhelming the service, compared to the patients who really do need that service.

Yes, I think you're right. But I guess the answer would be that you build in a solid triage system into that self-referral system. Again, something that Dr Karupiah has responded to, a quick one to you on the use of blood tests and ultrasound at the same time, which has been encouraged by Target Ovarian Cancer—do you think that is something that should be encouraged in general practice, and do they have the skills to do that effectively? Dr Ali.

Blood tests are useful, but as we know, they're quite non-specific, so an elevated result is not necessarily diagnostic of an ovarian cancer, but in the way that it can be for some of the other malignancies. On ultrasounds, I'm not sure that all general practices—and correct me if I'm wrong here—have the skills set to be doing local ultrasounds within their practices, if that's what you were alluding to. Forgive me if I've misunderstood the question.

No, that's precisely the question. I think you perhaps, Dr Karupiah, would like to come in, with the shaking of the head suggesting that you wanted to agree.

You're right, Dr Ali, that if a GP surgery is requesting an ultrasound, it's according to the referral pathway that's available for the local area, and it's being referred out to the radiology department, as per the guidance, currently. But when I mentioned about the rapid diagnostic centre, when we refer, it's everything done by the specialist team, then and there.

Yes, okay. A question specifically about the situation in Wales. We hear from the RCGP that there is a very big difference between some parts of Wales and others in terms of how good the referral system works. Are we able to pinpoint where our problems are, geographically? Are we, conversely, able to point to other parts of Wales where there's really good practice that we could be learning from?

If you are mentioning about good practice, currently, like I mentioned—I know I'm mentioning about rapid diagnostic centres all the time—I think it's important that we have a timely, faster way of diagnosing something that, potentially, can be sinister. Because the time from the diagnosis to treatment is very important and crucial for a better outcome for the patient.

I think deprivation is one of the main reasons why we have disparity in terms of referral services. And again, education, socioeconomic status, and a patient being able to seek help in an appropriate time—again, a lot of these factors play a huge role. I think that this is something that we need to look into, and see whether we can have a standardised way of care. Because we want to make sure that everybody has equal access. At the end of the day, that's what we want to achieve, not just across Wales but across the nation.

So, it's not a matter of looking at which health board is doing it better or worse, even though—. We don't talk positively about Betsi Cadwaladr too often, but it has better cancer outcomes than other parts of Wales. But it's not necessarily looking at a health board area, it's looking at factors—whether they are developing rapid diagnostic centres, whether deprivation is greater.

Yes—whether that's being addressed, and whether they're actually reviewing their referral process, their pathway. That's important. It's pointless having a referral pathway and we don't audit to see whether it's working for that area or not, and then learning from each other's best practice.

Okay, thank you. And a final question. We are emerging from—I guess that's the phrase—a pandemic, and we have given a lot of thought to its impact on cancer pathways. Our big fear during the depths of the pandemic was that people would be presenting later and that that would be making problems worse. What kind of evidence are you seeing that that has happened, that COVID has had a very negative impact on when people present and on outcomes?

Because of the pandemic and the fear of falling ill from the virus per se, people have not sought help sooner. Even in terms of having a fractured hand, they wait because they don’t want to go to A&E and wait for hours to get help. So, the thought process and the way people seek help has changed. I think we all need to re-educate ourselves that health is important, and also to make sure that people are much more aware that the pandemic is easing. We are seeing that. The World Health Organization have announced that as well. It hasn’t gone, but have to learn to live with all these viruses. New ones may be emerging. But it’s important that when there’s a health concern, we seek appropriate help in a timely manner. 

And we know that people didn't for a period.

Yes. 

Are you able to see that in your practice?

Yes, I could definitely see that, and when they come now, it's like, 'Wow, if I'd seen this patient even six months prior, we could have put some things in place.' 

Do we understand the extent of it? Is it being measured properly? Are we able to—? Government is right to say that COVID has made its challenges even greater in terms of the health of the nation, although lots of these problems existed prior to COVID. But are we able to quantify the effect of COVID on gynaecological cancers and the challenge that we now face?

I think this is something that I can get back to you on. I think we need to look into it, whether it's actually being done, because we're just coming out of the pandemic per se, and the service is trying to boost itself up to how it was before, but in fact the service is trying to improve, because what the pandemic has taught us is that we can work differently and better with the new IT services and various ways that patients can reach healthcare professionals. So, it's something that we can harness, if you like.

And we'd be very grateful for any further information that you can offer on that. Dr Ali, did you have any comments on the impact of COVID, at the time, during the depths of the pandemic, or now?

I think part of the effect of the pandemic is that people have almost got out of the habit of engaging with screening programmes. So, they may have got an invite for their cervical smear or their breast mammography, and didn’t attend either because the service was subsequently cancelled or because they had concerns about contracting infections and their exposure. It’s almost about re-educating women that, actually, it’s okay, that if they have missed those appointments, they can now attend, or they can initiate that screening process once again. So, booking into the GP to have that screening, even if it was meant to have been done four years ago, or whatever it was. I think that’s quite an important part of the education of women and encouraging them to re-engage.

Also, going back to your point about the local demographic, the local issues within Wales and specific areas, it may well be that, actually, whilst we have a general approach to improving all areas—[Inaudible.]—and diagnostic pathways, et cetera, it’s worth paying attention that there may be specific communities in certain areas of Wales—and forgive me, I’m not aware of the exact demographics in different areas—that may need a bit of an extra, more targeted approach in order to encourage their engagement and involvement with these pathways. So, yes, I just wanted to raise that as a point.

I appreciate that, diolch. 

Thank you, Rhun. And Jack Sargeant.

Thank you, Chair. Dr Karupiah, in your first answer to Joyce Watson you referenced cervical screening. We've just heard Dr Ali mention it then as well. You mentioned the importance of dialogue. You also, in written evidence, have said that there is confusion in the public, whether that be the difference in dates and times—so, three years in Wales or five years in England; Scotland similar to Wales—and other age brackets, and so on. You referenced the change in Wales—I think it was in January of last year—and I think it's fair to say the announcement from Public Health Wales was pretty disastrous. I think it was a single tweet. We led a debate in the Senedd on a petition of over 30,000 people in three days because it probably wasn't the right way to do it. I think it's fair to say that we had an acknowledgement of that and assurances that improved dialogue would go out to the general public to try and alleviate some of the confusion within that. Is there enough dialogue going out, then, or is there concern there that, actually, we might need to, as a committee or individual Members, press this again with Public Health Wales, because that assurance that I received back in January of last year perhaps hasn't come to fruition?

I think that having this dialogue again definitely would be helpful. Whenever any one of us sees any women patients coming through to see us, we always ask that question about cervical smear, depending on the age group of the individual that we see. So, it's a natural dialogue that we tend to have, whether it's a GP, the practice nurse or any other healthcare professional. I think everybody has a part to play, and if we can, again, improve the dialogue widely and, again, like Dr Ali said, with the communities where English or Welsh may not be their first language, it's something, again, to tackle.

Thank you for that. Just in terms of a general appointment to get a screening test, a smear test—and Dr Ali, you sort of referenced this, didn't you, in your last response to Rhun—how difficult is it to get a smear appointment? If you need to rebook or get your first initial one in that year, are the workforce pressures there limiting options? I'm not sure—. Dr Ali, perhaps you would like to answer.

I think it should be fairly easy to access them, because it doesn't require the GP to necessarily do the smear. Most of it's co-ordinated through the nurse clinic, but it does require the patient to take the initiative and book the appointment, or respond to their leaflet reminder; it's not an automatic booking that will be made on their behalf. But, in terms of practically gaining access, that should be relatively straightforward.

Thank you. Moving on to the last set of questions from me, then, both of you, in answers to committee, have stressed the importance of understanding different cultural beliefs in the different communities that we have here in Wales. I talk a lot about data—I try to refrain from talking about data in the health committee, because it makes me stressed, but I'll ask the question, perhaps to Dr Ali: is there sufficient data in particular to understand the cervical screening from ethnic minority groups, so that we can understand, perhaps, who is at increased risk?

Sorry, I didn't quite catch that.

Is there sufficient data in terms of ethnic minority groups going for cervical screening smear tests, so that we can understand whether a certain group is at more risk than another? 

The data that's out there is: the public health data clearly demonstrates that areas with increasingly diverse populations—typically non-white populations—have significantly reduced uptake of the screening programme. There's also data that suggest that women from minority backgrounds present later with their cancers and they have worse outcomes as a consequence of that. Then, there's also lots of anecdotal data—you know, individuals who report multiple attendances early in their life, not taken seriously, presenting with advanced disease and having a very poor healthcare relationship and outcome as a consequence.

So, I feel that there is a wealth of data; it's still evolving and there's still a need for more formal research. Again, alluding to research, part of the issue is that minority women are less likely to take part in, for example, clinical trials, where the huge demographic tends to be Caucasian, so they are almost, in terms of their treatments, perhaps, being limited as well through a lack of awareness and a lack of involvement there.

Just to ask additionally to that, then, do you think there's also—? One of the barriers perhaps, and, I think, Dr Karupiah, you mentioned the interpretation line that you use—

Yes, the language line.

—but perhaps there's a reliance on family members of women from different communities here in Wales to come forward with gynaecological problems, with cervical screening tests, or other women's health issues. Is that a real barrier? And is that something that we need to address more than just having the line perhaps that you and your practice use?

Yes. I can't stress the importance of having the conversation with the patient, not with the translator who's accompanying them, because, many a time, the person who's accompanying the patient—a family member or friend—have translated wrongly. So, using the language line is important, because it's coming from the patient's own words and being translated without bias. That is important. There was a case that I will never forget, where a 60-plus-year-old woman came in and was seen over and over again for a urine infection, because she was seeing blood in the urine. It turned out that it was actually blood from the vagina, and by the time that we referred her, her cancer was quite advanced.

So, there might be a piece of work to perhaps not only support more interpretation lines like the one you use in your practice, but actually to promote that to the women and communities, to make sure they're aware that this is available and that perhaps you don't have to rely on the family member to help interpret to the doctor or medical person.

I agree completely. And we need time, we need time to talk and discuss, because when there's a language difference, it takes longer to have the dialogue—and important dialogue. And probably we need to look at ways of having a system in place when we have people with a language problem that they have allocated time given, and it may not necessarily be with that particular GP's list of patients, because it gets lost. We don't want to miss. So, we really have to look into ways of how we can have a robust system in place, that we can actually help people to communicate what's going on with their health. That's the first thing that we need to encourage and look into.

Thank you, Dr Karupiah. Dr Ali, I'm sure you agree with those comments. Perhaps, if there's anything additional to add—. 

I do absolutely agree. I guess my only additional comment is: something as simple as ensuring that you have female healthcare professionals in order for patients to engage with them, because culturally, for many minority groups, they just simply will not speak with a male doctor about these issues, and if there is restricted access to female physicians, then clearly, that can be an issue. 

Okay. Would you say that there is enough at the moment? Or do we understand perhaps how many female medical professionals we need? Because we've heard evidence before where we don't understand, actually, the workforce in its entirety. Is that something you would come across?

I'm told that females within the healthcare profession or the medical profession are now in the majority; as to in terms of how that translates into primary care within Wales, I'm afraid I'm not sure of the demographics. I would have thought that most practices—. I would hope they would have at least one female doctor. As to their availability, acknowledging that many female doctors are often working part time, et cetera, I'm not sure as to the regular availability of such individuals, but it's certainly something that should be considered.

Thank you for that. And I appreciate it was a rather difficult question perhaps for me to ask as well. I'm grateful for your answers. Thank you.

Thank you, Jack. We've had some very powerful evidence provided to us, especially in some of the video footage of women who have gone through a terrible experience in terms of their journey. And, as a committee, yes, we want to shine a light on those poor examples, but ultimately we want to make recommendations to Government to ensure that these kinds of experiences don't happen or they're significantly reduced. Is there anything else? To end this meeting, are there any final words from yourselves, in terms of our work and what we could be recommending to Government, that you think we should be considering in terms of improving that gynaecological cancer pathway for women? Any final words, I suppose, you would like to leave us with in terms of the work that we're embarking on. 

I think this shouldn't be the end of it. This is a very important dialogue and I think we need to ensure that what we've discussed here is forwarded to the appropriate authority or organisation, that active action should be taken. The women who have experienced negative health experiences are real, and we need to make sure that—it shouldn't repeat. Because most of us, I would say, are NHS service users, and we want the best service for all of us. So, I think it's important that we continue this dialogue and move this forward to see how it can best fit the purpose that we are trying to achieve.

Thank you. Dr Ali.

Thank you. I think having the conversation is a great starting place, recognising it as an issue. So, thank you for allowing us the opportunity to be part of this conversation. Going forward, ensuring that there is ongoing engagement and ongoing dialogue and conversation in terms of guiding how things are developed will be crucial.

Thank you very much. Can I thank you both for your time today, and your advance evidence papers as well? We appreciate you're both very busy people, so thank you ever so much for your time this morning. Diolch yn fawr iawn. Thank you.

I appreciate it. Thank you.

I move to item 4. There are a number of papers to note. We have correspondence with the Finance Committee on the scrutiny of the draft budget and the financial sustainability and balance of health boards. We also have correspondence with the Welsh Government on matters including Betsi Cadwaladr health board, the all-Wales hospital discharge policy and associated guidance, endoscopy services, and also healthcare regulations. That's all included in the public pack and the public agenda today. Are we all happy to note those papers?

Yes, Chair.

Thank you.

I move to item 5, and I propose in accordance with Standing Order 17.42 that the committee resolves to exclude the public for the remainder of this meeting today and also for all items other than items 1 to 3 at the meeting on 25 May. Are Members content? That's great. Thank you. Diolch yn fawr iawn. That brings our public meeting to a close today.