Y Pwyllgor Iechyd a Gofal Cymdeithasol

Health and Social Care Committee


Aelodau'r Pwyllgor a oedd yn bresennol

Committee Members in Attendance

Gareth Davies
Huw Irranca-Davies
Jack Sargeant
Joyce Watson
Russell George Cadeirydd y Pwyllgor
Committee Chair
Rhun ap Iorwerth
Sarah Murphy

Y rhai eraill a oedd yn bresennol

Others in Attendance

Andy Glyde Ymchwil Canser y DU
Cancer Research UK
Dr Sharon Hillier Iechyd Cyhoeddus Cymru
Public Health Wales
Jane Dodds Aelod Canolbarth a Gorllewin Cymru
Member for Mid and West Wales
Yr Athro Fu-Meng Khaw Iechyd Cyhoeddus Cymru
Public Health Wales
Yr Athro Iolo Doull Grwp Strategaeth Feddyginiaethau Cymru Gyfan
All Wales Medicines Strategy Group
Sadie Jones Canolfan Ymchwil Canser Cymru
Wales Cancer Research Centre

Swyddogion y Senedd a oedd yn bresennol

Senedd Officials in Attendance

Claire Morris Ail Glerc
Second Clerk
Helen Finlayson Clerc
Rhiannon Williams Dirprwy Glerc
Deputy Clerk

Cofnodir y trafodion yn yr iaith y llefarwyd hwy ynddi yn y pwyllgor. Yn ogystal, cynhwysir trawsgrifiad o’r cyfieithu ar y pryd. Lle mae cyfranwyr wedi darparu cywiriadau i’w tystiolaeth, nodir y rheini yn y trawsgrifiad.

The proceedings are reported in the language in which they were spoken in the committee. In addition, a transcription of the simultaneous interpretation is included. Where contributors have supplied corrections to their evidence, these are noted in the transcript.

Cyfarfu’r pwyllgor yn y Senedd a thrwy gynhadledd fideo.

Dechreuodd y cyfarfod am 09:33.

The committee met in the Senedd and by video-conference.

The meeting began at 09:33.

1. Cyflwyniad, ymddiheuriadau, dirprwyon a datgan buddiannau
1. Introductions, apologies, substitutions and declarations of interest

Good morning and welcome to the Health and Social Care Committee this morning. First of all, just to say that, this morning, we're operating in a hybrid session. So, we've got one Member joining us virtually, and, as always, we're operating bilingually. There are no apologies this morning, and if there are any declarations of interest, please do say now. No.

In that case, just before I move to item 2 today, before we go into this formal session, I'd like just to pay tribute to Judith Rowlands, who sadly passed away at the end of last month. And you'll remember Judith's video was shown to committee on 10 May, as part of our inquiry into gynaecological cancers, and Judith was very keen that we showed her experience and shared her experience publicly. And I understand Judith was able to watch that particular session as well from her hospital bed. So, on behalf of the committee, I'd like to offer our very sincere condolences to Judith's family. 

2. Canserau gynaecolegol: Panel 5 - Iechyd Cyhoeddus Cymru
2. Gynaecological cancers: Panel 5 - Public Health Wales

So, I move to item 2. Item 2 is in regards to our—this is our fifth evidence session—inquiry on gynaecological cancers, and this morning we're hearing from representatives from Public Health Wales. So, I'd be very grateful if you could, first of all, just introduce yourselves for the public record. 

My name is Fu-Meng Khaw. I'm the national director for health protection and screening services at Public Health Wales. 

Bore da. My name is Sharon Hillier. I'm the director of the screening division. I'm responsible for Cervical Screening Wales. 

Lovely. Well, thank you ever so much, both, for being with us this morning. I know that, previously, Public Health Wales has supported NHS-led awareness campaigns for cancer symptoms. I just want to gauge from you how successful you think those campaigns have been, and any evidence that cancer has been diagnosed earlier as a result of some of those public campaigns.


So, if I make a start, and then I'll bring Sharon in as well. We recognise that, clearly, raising awareness about symptoms of cancer is an important part of our prevention of cancer, because we know that early presentation improves the prognosis and outcomes. So, we support where we have the expertise, and our key expertise is around cervical cancer screening programmes, and Sharon will talk through some of that detail. In terms of raising awareness campaigns, sometimes we target both public and professionals. The sustainability of the public messaging can sometimes be limited in terms of the short-term impacts on raising presentation of cancer symptoms to healthcare. For a more sustainable impact, we need continued awareness-raising campaigns. So, I think this is something about reiterating the importance of persistent messaging for the public. And we do that by general public awareness-raising campaigns, and also working with third sector and other public sector organisations to support that messaging.

In terms of professionals, clearly, there's also a role there, because some of the symptoms that people present with are quite non-specific to a particular cancer. So, it's really important that it's seen as part of a suite of diagnostic tools to raise awareness amongst professionals, so that they can make the right diagnoses, or at least think and consider cancer as a potential differential diagnosis when a patient presents with those symptoms. So, I think raising awareness amongst professionals is something that's also important and we would support where we can. So, I'm going to ask Sharon maybe to talk in a little bit more detail about cervical cancer.

Public Health Wales is responsible for delivering Cervical Screening Wales. So, that's about reducing the incidence of cervical cancer in our population in Wales. And the campaign work that we've done around that is, probably, the two campaigns that we've run. So, back in 2019, we led a campaign about #LoveYourCervix, and this was really to address barriers around embarrassment, or empowering women to consider taking up the offer of cervical screening, because we know that some of the barriers were embarrassment or lack of awareness. So, that was a campaign that we ran through social media, and we used really open language and inclusive language, in quite innovative ways. And also, as well as the health professionals and us raising awareness with women, we also used the third sector, but real sector—health professionals and also beauty professionals. They were very helpful in talking with women and raising the issues around cervical cancer. So, we could really empower women to love their cervix and really value their bodies, and then turn up and take up that offer. So, that was one aspect of the campaigns, but also it's about that consistency of messaging as well, with clarity.

And then, back in 2022, actually as a result of communicating with women about a change in Cervical Screening Wales, we ran a campaign around that messaging, around HPV primary screening, to build the trust, but also to explain the messaging around the cervical screening programme, so people were aware—very clear, consistent messaging, again, through social media, using work with a media campaign to get that message across around the cervical screening and the method and the testing that was undertaken. It's very difficult to put a causal link from a campaign to an early diagnosis, but, actually, it's about that understanding and that consistency of messaging so we're all saying the same thing. And we work very closely with our third sector colleagues around that too.

Thank you. And I should thank you also, both, for your substantial written evidence, which is very helpful to us also. I notice in your evidence you said,

'It is very unlikely, based on the current available evidence',

that a specific awareness raising campaign focused on gynaecological cancers would help or be effective. So, I suppose, it's just to expand a little bit further on that, and just to ask what you recommend is the most appropriate action, I suppose, to encourage women to be aware of changes in their body.


I think we recognise this as a complex intervention, that multiple interventions work together to achieve the impact that we want, which is for early detection of cancer to improve outcomes. We must remind ourselves of the reason why we're doing this. I think this is about acknowledging that a single campaign is not going to be as effective as multiple ongoing, recurrent campaigns. Obviously, the cohort of people who are approaching the high-risk areas, and we know that cancer risk increases with age—. As the cohorts come through, there will be a cohort effect about who listens to the messages that we're putting out there. So, without a recurrent awareness-raising campaign, then we're only impacting on a selected cohort, so I think a continued campaign to both public and professionals is what we need.  

And just to ask about any campaigning that you might think of running, in terms of ovarian cancer symptoms as well—.  

In terms of ovarian cancer, we don't currently have a screening programme for ovarian cancer, so that doesn't fall within the remit of our screening programmes. Now, we work closely with NHS Wales as a whole to improve awareness of symptoms, but we rely on clinicians, and we don't have the expertise within our organisation to do it on our own, so we would work in collaboration with our partners. 

Yes. With your permission, Chair, I think it might be an idea to bring the couple of questions that I wanted to ask forward to here, because they follow on directly from what we've heard already. On consistency of messaging, first of all, if you're looking at questions that people might ask, or the knowledge or lack of knowledge that people might have around the impact of HRT on the likelihood of developing cancers, the impact of the contraceptive pill and lengthy use of the contraceptive pill on the likelihood of developing cancer, what work is being done on ensuring that there's real consistency and understanding on those kinds of messages? 

I think consistency of messaging is clearly important, and there are websites that will be trusted websites, and NHS Wales will have some information that is checked with professionals to ensure that they are accurate and consistent. Now, Public Health Wales doesn't have a key role in some of the public messaging around cancer symptoms, and, again, we would be happy to advise where we can. Our key focus around gynaecological cancers is on cervical cancer because we do provide a cervical cancer screening programme.

Your question is about drug treatment, basically, isn't it—your individual choice. I think individuals need to consider that for themselves, because there's always a risk and benefit of any HRT or the oral contraceptive. It is a balance of risk and benefit for the person. So, I think that's an individual aspect of a— 

But the individual can't make the choice unless the messaging, the information that they're given, is clear enough, is laid out clearly enough in front of them, and my question is is that messaging clear enough. There might be something with some small print that's handed to somebody with some treatment or with contraception, but unless that's discussed, unless the risks are weighed up, then that's not going to be effective. What's being done to make sure that that messaging is clear? 

Again, it's that information and that informed choice, isn't it, because the person—. So, for example, with HRT, they'll be balancing—it's not just gynaecological cancers; it will be breast cancer as well—and they're balancing the risk of that for them, which actually the information is at population level, compared to actually what their symptoms are like, and it is, actually, difficult to—. It is an informed discussion with their GP around that.

I'll ask the question in a different way. Do we need to be messaging better so that people can make that informed choice in a more informed way? 

Of course. This is the general issue isn't it, about how people make individual choices, so that they know the risks of undertaking a procedure or whatever, and sometimes, it's subject to a consent, and the consent requires people to be given the necessary information, and that, particularly, is around surgical procedures, but for other things, like taking tablets, often, there is no informed consent, but the consent is taken as read when someone takes that tablet. How we then improve the clinical consultation is something we're not directly involved with, but I agree the system needs to recognise the importance of the consultations that lead to that choice being taken. So, in terms of HRT, its impact, its prevention or its risks, those need to be included in the clinical consultation with a healthcare professional.


Thank you. Gareth, you want to come in briefly, then I'll come to Jack for his questions. Gareth.

Thanks, Chair. I just wanted to pick up again on the messaging and how far you believe that that resonates through all facets of society, because, obviously, we've got areas of—I look at my own constituency, and we've got areas of deprivation. Do we think that message comes across all of society, and is that message then embedded within local authorities, third sectors, in order to encourage women of those backgrounds to have an equal footing with everybody else, if you like?

We know there are many populations that are not served well, and they're not served well because we don't make enough efforts to reach out to them in the ways that they are more receptive to. So, it may be that digital methods might be better for certain parts of the population. And I think, if I answer it generically, rather than specifically, our first point of action is to understand how people might receive messages best, and also understand their appetite for change as well, because there's a whole change theory about it. I think working with people who know communities the best, either the community representative, third sector representatives, local authorities, to then come up with a solution about specific populations, but —

So, is that to suggest then that socioeconomic factors can be a barrier to getting diagnosis and early treatment, then?

Diolch, Cadeirydd. Good morning, both. My hay fever's terrible, so I apologise in advance if that causes any difficulties this morning. Professor Meng Khaw, you said in response to one of the opening questions from the Chair that the risk increases when we age in terms of cancer. Public Health Wales were involved in a study that has also reported this in terms of gynaecological cancers. How do we reduce that risk?

So, risk factors are either modifiable, or unmodifiable. Age, unfortunately, is not a modifiable risk. But there are things that we can do during that journey to reduce the risk, so the three key risks leading to some gynaecological cancers are HPV infection, that's a human papillomavirus infection, smoking and obesity. So, by taking action against the three, and we know for cervical cancer screening, 99.8 per cent of cervical cancers are attributable to HPV infection, so taking action by detecting the presence of HPV infection then allows us to be more confident to take preventive measures to reduce the progression of cancer in those women.

Okay, thank you for that. I'll pick up the two other points, perhaps—smoking and obesity. Firstly, smoking, I think it's approximately 21 per cent of cases of cervical cancer every year in Wales. Can you enlighten the committee about how robust that evidence base is?

So, our Welsh cancer intelligence surveillance unit collects data on cancer and collects data on risk factors as well, and from their statistics, we are able to ascertain what the contributory factors are to cancers, and that's how that was derived.


Thank you. And just one final question from me, Chair, and as I alluded to, it will be on obesity and overweight. I think the figures I have are that 7 per cent of cases of ovarian cancer could come from being obese or overweight and around 34 per cent of endometrial cancers in Wales. However, there is no reference to the increased risk of endometrial cancer from being overweight or obese in the 'Healthy Weight: Healthy Wales' delivery plan. Would you like to see that in that plan?

I think the 'Healthy Weight: Healthy Wales' plan has been around for a few years now with targets to achieve improvements in the obesogenic environment strategic leadership by 2030, and I think with any of these long-term plans, the evidence changes and I think we need to move with that evidence and perhaps a refresh of our thinking might be helpful.

I think the specificity depends on the nature of the plan. If you made a specific case for endometrial cancer, it might look a bit out of proportion with all the other things that we know obesity is a risk factor for.

Yes, with a question, if I could, which sort of ties up the earlier points we were talking about about the role of primary care and the preventative agenda and lifestyle factors that Jack was referring to. What work are you doing to help primary care do that vital work with women to promote healthier lifestyles, so that different choices can be made earlier in life, hopefully, and the chances of detecting cancer early is improved and avoiding it at all is improved?

Yes. So, working with our professionals is an important part of our daily work, and we work as part of a wider healthcare system, recognising that no one organisation, no one profession, can do everything that’s necessary. So, around the healthy weight agenda, the work stream around leadership and enabling change brings us into that space of engaging with our stakeholders. And we clearly have directors of public health in health board areas who will be the local leaders and champions, and health boards deliver primary care. So, I think there will be local work ongoing as well, and we will advise and contribute where we are going to be adding value. 

What are the key work streams that you have to try to ensure that cancer prevention is improved and the work that primary care does in cancer prevention is improved?

So, I think our key work stream is in the cervical cancer screening programme, because we do deliver it, and Sharon will have some of the details about what we do with primary care.

Yes. So, the aim of cervical screening is actually to prevent cervical cancer; it’s a primary prevention, and primary care deliver that. So, we are responsible for sending the invitations out, and women will attend to have their cervical screening—at primary care, mostly, some in sexual health—and then, we analyse it in the laboratory, and then we refer to colposcopy, with the aim of—

Can I just stop you there for a second, because I know the next block of questions are going to be around screening?

If we can just come back to the messaging and the prevention, how do you try to make sure that the conversations take place in primary care between an advanced nurse practitioner, or a general practitioner and their patients, to try to make sure that the chance of developing cervical cancer is limited?

So, in terms of the cervical cancer being limited, our sample takers—we train the sample takers around some of the messaging in cervical cancer, but also about symptoms, and that referral straight to colposcopy. So, they really are delivering that service for us in terms of the education aspect of it. So, the focus on the cervical is really the HPV, so it’s also vaccination and screening are those two prongs, really, to make sure that we reduce the incidence of that.

So, I think the wider remit is worth exploring—how the system works together. Because as I said, no one organisation will be responsible for that patient-healthcare professional interaction. And I look to the opportunities that Public Health Wales has, going forward, with its refreshed long-term strategy, published a couple of weeks ago, and one of the priorities is to work with the NHS and recognise that there's a system-wide opportunity for us to really maximise our prevention, and I think that will take us into working with primary care. We have a primary care team that clearly has a lot of priorities around chronic diseases as well, diabetes being one—the diabetes prevention programme is starting to show clear examples of that system-wide working, and I think there’s every opportunity for us to widen that scope to include areas of significance like cancer prevention.  


I think that's very, very useful, and I think I'd be keen to see us as a committee making recommendations to invest properly in expanding that prevention agenda. And diabetes is one that we touched on in the Senedd yesterday, of course, with the statement from the Welsh Government. 

—I just know we want to come on to screening. I didn't want to take somebody else's questions.

No, that's fine. We'll come back to that. Sarah Murphy wants to come in on that, but I'm going to come to Joyce Watson first and then I'll come to Sarah. Joyce Watson.

Good morning, both. I want to focus on HPV, particularly, and vaccination especially. And you say that protecting against different strains of HPV could prevent 75 per cent of vulval cancer cases—and that's a really high number—and reduce 150 cases of cancer in Wales each year. So, that message is serious, and given that it is serious, why isn't the World Health Organization's guideline of 90 per cent uptake being achieved, given what you say about vaccine effectiveness?

So, HPV vaccination is clearly an effective intervention to prevent infection, and we know that HPV infection is a high-risk factor for cervical cancer screening. In terms of our targets, compared with other UK nations, we've achieved very high targets and vaccination rates in Wales. So, from August 2022, the uptake of dose 1 in girls by the end of year 9 was 84.7 per cent, and uptake of dose 2 by the end of year 9 was 70.6 per cent. Clearly, that’s under the WHO recommendation, and we can do more to improve the uptake. Now, the Joint Committee for Vaccination and Immunisation has reviewed the evidence and the programme will be changing to a single-dose vaccination, and I think that will allow us to really focus on that single dose and improve the uptake even further.

Some of the uptake figures that you see for children, and boys were included in the programme in 2018 for very good reason—that overall percentage has dropped as a result, because getting boys to take up the vaccination is a little bit more difficult than with girls. So, I think that gives us the opportunity to focus our attention on this, and we are providing vaccination in the right place—school nurses vaccinate our children in a school setting, which I think is a good way of improving uptake. But there are opportunities for catch-up later as well, and we offer HPV vaccination for men who have sex with men until the age of 45 as well. So, we are doing as much as we can, but I think the move to a single-dose vaccination will allow us to focus our resources.

Okay. Is there a reason that boys are more resistant to the uptake than girls?

I mean, the reason is, I guess, personal choice. It may be something to do with parental choice, but I think the most obvious reason is because the risk of cervical cancer doesn't fall on boys themselves, the prevention is seen to be indirect. But, actually, there is a direct prevention against infections—oropharyngeal, anal and other HPV infections—in boys. So, there is a good direct benefit as well to boys. I think we can do more to raise awareness of that, but you can imagine that in that age group it's quite difficult to have direct communications around this. But I think the less we make this a myth and the less stigma there is, the more we can have mature conversations about this with this age group.


One of those mature conversations was had when we had the COVID outbreak and it was quite clear where you were asking younger people—not just boys, but younger people—not to infect older people or other people. Has that sort of thinking gone on—a 'Just because you don't get it doesn't mean you might not spread it' sort of message? I know it's not an easy one, but nonetheless, it's about personal responsibility, which is what we're really talking about.

I think you're absolutely right. This is about how we all contribute to a healthy society, and sometimes we do things for the greater good that might not have direct benefit. We know, for example, herd immunity for the measles, mumps and rubella vaccination is a case in point, where we seek to achieve 95 per cent uptake rates for that very reason.

You said that there's a very high percentage of HPV infection with the potential going on for cervical cancers, and it's been proved also that immunisation is hugely effective in preventing any of that, so there must be concern about vaccine hesitancy. It seems that it's increased following the COVID-19 pandemic. Have you looked at understanding why that is? Is it anti-vaccine messages that have permeated?

We have worked, and we are continuing to, in line with the Welsh Government national immunisation framework, one of the pillars of which is to address inequity in vaccination. We, I'd like to say, are internationally recognised and have presented to the WHO on the work we've done around vaccine inequity, particularly during the COVID pandemic. I think there are lessons to be learnt there. I think we've underused our resources around behavioural insights. We now have a behavioural insights units within Public Health Wales, and we have a practitioner embedded within our health protection team that will help us in our journey to address the vaccine inequities. Looking ahead, I think inequalities in health protection is something that I'm particularly interested in addressing, because people don't talk about it, and if we don't talk about it we'll not recognise the key actions that we can take, because health protection is not just about infectious diseases, but it's also about the environmental hazards, air pollution. We know the differential impacts of air pollution. So, I do want to energise Wales into a debate around health protection inequalities, and one of the key areas of work would be around vaccination inequities.

Finally from me, HPV is a sexually transmitted virus, and it's parents who would advise their children to be vaccinated or not vaccinated. Have you got any evidence that alludes to parents thinking that their children are not sexually active and therefore they're not at risk, and therefore they don't need the vaccine? If you have, what sort of message do we need to change?

I don't have the evidence, but we can find out and get that to you after this meeting. I do know that one of the important messages in vaccination for HPV is that it's not saying that people are sexually active. Also HPV is not a sexually transmitted infection; it is about skin-to-skin contact in the genital area. I do think we have a few myths to bust in that space, and I'd be keen that we keep on reiterating those messages—that it's not necessarily about vaccinating those who are sexually active. Sharon, did you want to add anything?


I think the key bit with HPV vaccination is actually vaccination before sexual activity. So, it's all. That's the messaging, really, and that's the aim of the timing of that.

Thank you, Chair. Thank you for being here this morning. I'm going to ask some more questions about cervical cancer screening. The overall aim of cervical screening in Wales is to reduce the incidence of mortality from cervical cancer in Wales. Can you tell us a little bit about what is the current trend and what does current projection and prediction data tell us about when we can expect to actually see a reduction in gynaecological cancer deaths?

Shall I take that? There are two prongs to the prevention of cervical cancer. There's the HPV vaccination, as we've talked about, and then cervical screening. And, actually, they both work together. The WHO guidance on elimination and working is, by 2030, they want, across the world, 90 per cent uptake for the vaccination—that was what we were talking about—and then 70 per cent uptake on the cervical screening. But, actually, their schedule for cervical screening is much less frequent—it's 35 and then 45. So, actually, in terms of the cervical screening, we're online with that. Our uptake is just shy of 70 per cent—it's 69.6 per cent. We've got some variations across our community, as we touched upon, in terms of areas of deprivation, younger aged women, and some geographical areas. So, we're focused on those and addressing those. So we're offering in line with what we know the evidence base to be reducing.

The incidence of cervical cancer currently is about 160 a year that we diagnose. In 2019 it was reduced to 145. We don't know what the latest figures are, but it will be interesting. Certainly, every time they get published, I'm looking at the number and I want to be seeing that coming down. But it will take some time for our population. So, we've talked about the HPV vaccination, and that cohort of women coming through will be where we see the reduction in the prevalence of cervical cancer. But we're managing the whole cohort. So, women such as myself—I wasn't of the age for vaccination, so we'll have to manage the risk and the prevalence in that population. We'll have to keep that screening to reduce that incidence as well. So, it's going to be really complicated to see the prevalence and how these change, and we'll be working with colleagues across the UK countries to see how we do that and work together, with the aim of reducing that incidence even further, and, with that, the mortality.

Thank you. That's a very comprehensive answer. As you said, we all want to start seeing those numbers come down.

You've touched on this, and my colleague Gareth Davies also touched on this in terms of messaging, but, as we know, it has been reported that cervical cancer screening uptake is generally lower amongst women living in more deprived areas, as well as women from black, Asian and minority ethnic communities. So, what is Public Health Wales doing, exactly, to understand the barriers to the uptake, and to ensure that everyone eligible for screening has that equitable access and opportunity to take up their screening offer? And, just to add on to this—I know you have touched on this—are there any plans as well to disaggregate the screening uptake data by protected characteristics like ethnicity, so that it's easier to have a look at that information?

Shall I take that? Thank you. We are not able to look at our data with the protected characteristics that we would like to. We're able to look at our data around age, geography and deprivation. We're not able to look at the data in terms of ethnicity. We're discussing how we can do that, and that's an aim of ours—to be able to take that forward. But when we look at the data, we understand that there's differences within the age—young women are just below; they're sort of 65 per cent uptake coming through—and also the deprivation. So, the messaging we undertake is really focusing those key messages. Back in the summer of 2022, as a result of that, through our communication, we went out in a very focused social media campaign, focusing on those communities—so, deprivation, BAME communities—with that clarity. We focused the messaging, working with those communities and charities, to make sure the messaging landed and it was understood in that way. So, really, it's that targeted messaging, but checking with the communities that they're understanding the messaging that we're putting out, really. That's one of the focuses.

We've got an equity strategy across the screening division, which aligns with the communication being clear, working with our third sector communities and our messaging around that. We're also working with the data, so we're improving that data, and working across the health community as well. We're working with our partners in the public health teams to get that messaging coming through. It's an equitable offer to all, so everybody gets an invitation, and that information is offered in easy-read, in audio, in different languages on our website, and we've also got a number on there for our offices as well, so if people want to discuss it, then they're able to contact one of the regional offices and talk to a nurse, if they need to. Our sample takers in the GP practices understand the messages and that approach as well. So, it's the general approach, but when we're targeting, we are targeting those communities that we think are a little bit more hesitant to take up their screening offer.


Thank you. As time is critical today, would you be able to follow up in writing for us about the discussions and priority timescales for disaggregating the data by ethnicity?

Thank you very much. And then finally, in January 2022, there was an adverse reaction to Public Health Wales's announced changes to the cervical screening programme, when it introduced HPV testing and increased the time period between tests from three to five years. I know I spoke on this in the Chamber, as did many of my colleagues, and many of us heard from our constituents who were very worried. So, can I ask what lessons have been learned from how this change was communicated to the public, and do you think trust in the safety and effectiveness of the cervical screening programme in Wales has been rebuilt now?

Thank you for that. Yes, you're absolutely right, January 2022 was a very difficult time in terms of the reaction to the message. We have learnt—I've certainly learnt, but the whole team have learnt—in terms of that approach. After the event, we undertook an after-action review, so we all got into a room and we were led through an after-action review together, to work out what were the learnings and how could things have been better. Actually, from that, we pulled together a bit of an action plan, and we've got that as a tool in our heads in terms of that messaging.

The key ones, really, were about landing that message and getting that feedback back from the communities. Because we felt we were communicating in one way, but obviously that message came back in a very different way. So, when we've undertaken work now—. We did do engagement, but we're now doing it in a much more thorough way of starting with a plan of, 'This is our messaging', and then really taking on board the third sector, but also the communities that that messaging would go out to, and they've made changes and made it very different. The campaign that we ran after that was run in a very different way, where we went out to focus groups, we had detail, and we did make changes to that messaging, going forward. So, that was the campaign that we focused on.

The clarity from that feedback was that, actually, there were misunderstandings, we had not managed to get the messaging across around the cervical screening fundamentally. Because it changed from a cytology-based test to a HPV-based test, but, obviously, when you go and have your cervical screen, it feels like the same test. So, in our heads it had changed very much, but, actually, from women and people with a cervix who'd gone to take up that offer, it hadn't changed that much, so our messaging on that was made clearer. And also, whenever somebody gets a result now that's HPV negative, where we can then offer screening in five years, we also follow up. We include an information sheet, which is that information, again, very clearly, so people understand it.

We haven't had further complaints or concerns brought from that from people, because I think that, hopefully, that messaging has gone back out. But we are following people who are HPV positive more frequently. So, if you're HPV positive, we will invite you every year. If you have cellular changes, we will refer you straight in, but, actually, if you have three yearly tests where you're HPV positive, we will refer you to colposcopy as well. So, it is—[Interruption.] Yes. So, hopefully, it's improved. Thank you. 


I think you're right. I think it churned up an awful lot of anxiety and misunderstanding in gynaecology for a lot of us, really, and you've touched on that already. So, I think that's why we decided it was so important to do this inquiry, and that's why it's been excellent to have you here today, actually, to speak to us and to explain it better. And hopefully, it will be able to do some good and assuage some of those anxieties and misunderstandings as well. 

Thank you, Sarah, and Sharon, thank you for agreeing to the additional written evidence as well; it's appreciated. Jack, you wanted to come in on a question. 

Yes, very quickly, Chair. Just looking at the January 2022 experience, and I don't want to rehearse that—I think I was probably part of the headaches for your team there. A petition was raised and there was the reaction, and I'm grateful for the comments to Sarah Murphy's questions and the learning that has taken place. But just a forward look, if you like. We mentioned the JCVI change to a single dose. That, again, is a big change or perceived change to members of the public, who are not medical experts, like myself. Will that tool that is embedded in Public Health Wales be used when laying out information, 'It is a single dose; this is JCVI approved', and that message. So, the tool will be in action and we won't get any—or, hopefully, we won't get any—adverse experiences. We may have some—often, that happens—but we won't see, perhaps, the same reaction or level of reaction that we did back in January 2022. We're confident of that. 

So, Public Health Wales is an organisation that's committed to continued learning, and we are continuing to do so. So, in addition to the after action of review and learning from the action we took in June last year, we are also undertaking the International Association of National Public Health Institutes, IANPHI—. It's a staged development tool that they've developed for areas of inquiry, so, across a whole range of topics, such as surveillance, acute response, health communications, they've got a maturity tool to assess the level of maturity of a public health institute that's functioning at a particular level. And there are ways to then commit to actions within a certain timescale to be able to function at a higher level. So, that's work that we want to do around health communications.

There are several things that we probably need to consider under that. Screening is one; how we communicate about infectious diseases—so, the group A strep instance last year, at the back end of last year, when there were also pressures on the NHS as a whole. It's about how do we get those messages out in a proportionate way that conveys the risk, that sets out the things that we want people to think, the things that we want people to feel, and the things that we want people to do. It's a very complicated space. So, I think if we take some examples of health communications, bring it all under one umbrella, then we'll include the vaccination piece in there.

But the common link for us is our comms team. The comms team were heavily involved in that learning, and they're also heavily involved in the vaccination messaging. And in the vaccination programme, there are communications experts that are helping us.  

Good. That's good to hear, and I am grateful, Dr Hillier, for the work your team did following that incident in January 2022. I don't like being a headache to people, really, but sometimes we have to. 

Thank you, Chair. I wanted to talk about self-screening and explore the potential possibilities around removing some of those barriers and getting quicker diagnosis and possible treatment in future. How achievable do you think this is? What steps can we do to maybe encourage into that into future practice? 

So, I'm very optimistic that we'll be looking to self-sampling in the near future for cervical screening. And that will be, again, working with our colleagues across the UK. So, England are undertaking a study validate, where they're validating a self-sampling tool, a self-sampling swab, basically, to check how good it is compared to the current practice. So, we're waiting for the outcome of that, and I think that's aimed to be December 2023. But that's where we're looking to explore within the programme in Wales. So, that bit is the key bit. And it's going to be considered by the UK National Screening Committee, and we'll be looking with great interest at that, and being early in that to adapt. 

We think, probably, the first bit of that might be with our non-responders. So, when we invite somebody—and it's really important to recognise that nearly seven out of 10 women take up their offer currently, so it does have good uptake, but we need it to be better. So, we know—. We'll invite them, we'll remind the women and people with a cervix to take up their offer, and then they become a final non-responder. So, we know that, in stages—. So, we'll probably—. When we start it off, we'll probably explore that with people who don't take up that offer, to see if that improves. 

There is some work about the self-sampling, where it might not be as sensitive and specific as a trained professional taking a sample. So, we'll need to understand that. And also it tests for HPV positive—if somebody is HPV positive, they will have to come back and have a cervical screen, because we need to look at the cells, and you can't do that from a self-sample. So, it's not a panacea that will address everything, but it's going to be a really important part of our toolkit, really, to ensure that those barriers are addressed. And that is my expectation as we move forward, that that will be, probably, how the cervical screening develops. 


That's really helpful, thank you. How well geared up is the sector for self-screening? Because, obviously, we want to see an increase in this. You say seven out of 10, but, ideally, we want to see 10 out of 10, don't we? We want to see that being maybe a definitive path to narrowing some of these imbalances in getting treatment and diagnosis. So, how much is the sector, perhaps, geared up, and, in terms of looking into the future, how is the recruitment and retention of the right staff and nursing professionals in the sector been able to maybe cope with the increased demand in services?

So, taking your questions in a few bits, so self-help—. I came to the committee a few months ago to talk about bowel screening, so the bowel screening self-sampling test. So, actually, we're pretty familiar with the self-sampling model in terms of that approach. And the numbers for cervical screening are big. So, in 2022-23, 170,000 women took up their offer. So, we're talking large numbers when we're talking through this. So, we've got the infrastructure, if we were to move into that realm.

If it became more common that it was self-sampling—and I don't know, at the minute, how that will look and what that offer will be—that will actually reduce the impact on the GP practices and sample takers, potentially. And when we'll be looking at that, our laboratory—. The HPV positive test for that self-sampling, as it is now, it's a quantitative machine that reads that. So, we rely on people, trained people, to look at the cytology slides, and that's our workforce that we're very focused on. And that is a specialist workforce, and we have to keep making sure that that workforce is still there, because, previously, when we were all cytology screening, we had a very large cytology workforce. It's much smaller now; they're all based in one laboratory. 

Just on that, from what I can gather, the reason for self-screening is to remove that barrier of embarrassment of that physical examination by somebody that a woman might not know. So, where that might take the pressure off GPs, it's going to create a pressure somewhere else in another sector, in terms of those niche areas of research and clinical investigation. So, that's basis of my question: are we geared up for that, because, if you remove the barriers for that embarrassment, naturally, you're going to see an increase somewhere at some point?


Yes. And that would be for—. If self-sampling as an added tool to our cervical screening enabled more people to come through, I don't think the capacity in that would be the limiting factor. Because, through the screening bit, we'll be able to identify those that go to colposcopy.

Is Public Health Wales working with the Welsh Government, and is that an ambition from leaders in and Ministers within the Welsh Government to project this self-screening programme, and is that felt by Welsh Ministers? Because we talked, obviously, about UK-led committees, but there's also the Wales Screening Committee and devolved responsibilities here to the Senedd. So, is that ambition shared by people within the health department of the Welsh Government?

Did you want to come back in here on the other point, Professor Khaw, as well?

I'll come in at the end about the whole concept around self-sampling.

So, you're completely right. So, the Wales Screening Committee takes on the recommendations from the UK National Screening Committee, so they're aware of those discussions. But we haven't yet got to the bit of the recommendations at UKNSC because we're waiting for some key studies, such as the validate, which we hope will come out towards the end of this year. And those recommendations, then, will be considered by the Wales Screening Committee. But it's something on the horizon and we're looking at, and I think we'll be supportive around that.

But is there the political will, do you think, from the Welsh Government to implement that? Obviously, I don't know the make-up or how the Wales Screening Committee is balanced, but is that ambition shared amongst all of those bodies, to ensure that that self-screening tool is delivered at a devolved level here in Wales?

We've not got to the point where we've been able to take that recommendation through officially, but they're aware of the work, and the Wales Screening Committee is very committed to improving the screening programmes across Wales. So, I don't expect that to be a barrier, once the recommendations are through.

Yes. Thank you. I think you're right to ask the question about the impact of slight changes to a system on the rest of the pathway. And one of the things that we do very well in screening is that we do the end-to-end pathway and we consider any change and its impact. So I think it is right to bring it to this debate. But I think, just generally, self-sampling has many benefits, and I think the greatest self-sampling thing that we've gone through is the COVID pandemic. Think of the last lateral flow device test that you had—that's self-sampling. Now, go back to the first sample you ever took and how much attention you paid to the leaflet—it's like driving—and then, by the tenth, twentieth time, it was just natural; you didn't have to think about it. So, I'm not suggesting that screening will be like that, because it's not going to be a very frequent test, but I think people are more in tune with self-sampling as a concept, and I think we should tap into that strength and also explore what other areas we might apply self-sampling to. But we always need to go back to the evidence: what is the specificity and sensitivity—to use technical words—on that compared with what we regard as the gold standard? And currently, the gold standard still stands that it's sample takers taking these tests, until we're proven otherwise.

Thank you. If there are no other questions from Members, that draws this session to an end. But can I thank you, Professor Khaw, Sharon Hillier, for your evidence this morning and your detailed written evidence as well—very much appreciated. Thank you for the agreement to some further written evidence as well, following Sarah Murphy's question. So, thank you very much. Diolch yn fawr iawn.

3. Cynnig o dan Reol Sefydlog 17.42(ix) i benderfynu gwahardd y cyhoedd ar gyfer eitemau 4, 5 ac 8 y cyfarfod hwn
3. Motion under Standing Order 17.42(ix) to resolve to exclude the public for items 4, 5 and 8


bod y pwyllgor yn penderfynu gwahardd y cyhoedd o eitemau 4, 5 ac 8 y cyfarfod yn unol â Rheol Sefydlog 17.42(ix).


that the committee resolves to exclude the public from the items 4, 5 and 8 of the meeting in accordance with Standing Order 17.42(ix).

Cynigiwyd y cynnig.

Motion moved.

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

Derbyniwyd y cynnig.

Daeth rhan gyhoeddus y cyfarfod i ben am 10:29.

Motion agreed.

The public part of the meeting ended at 10:29.

6. Canserau gynaecolegol: Panel 6
6. Gynaecological cancers: Panel 6

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

Hi there. My name is Sadie Jones—

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

Diolch yn fawr iawn ichi am ddod atom ni y bore yma. Gwnaf ofyn ychydig o gwestiynau yn Gymraeg. Yn dilyn ymlaen o'r pwynt yna, mi ddof atoch chi yn syth. Eisiau gofyn ydw i am werthusiad gennych chi—nid gan Andy Glyde, rydyn ni wedi'i gael yn barod—o gyflwr ymchwil a threialon meddygol ac ati yng Nghymru ar hyn o bryd a beth sydd angen ei wneud er mwyn gwella pethau. Rydych chi wedi awgrymu arian yn un peth yn barod, ond sut y byddech chi'n disgrifio'r sefyllfa?

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

Ydw i'n cael ateb yn Saesneg?

Am I able to answer in English?

Cymraeg y dafarn dwi'n ei siarad.

I speak pub Welsh.

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

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


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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

7. Papurau i'w nodi
7. Papers to note

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

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


Daeth rhan gyhoeddus y cyfarfod i ben am 12:05.

The public part of the meeting ended at 12:05.