Cynulliad Cenedlaethol Cymru

Bore da. Croeso. Good morning and welcome to this morning's meeting of the Public Accounts and Public Administration Committee in the Senedd. The meeting, as always, is bilingual and headsets provide simultaneous translation on channel 1 and sound amplification on channel 2. Participants joining online can access translation by clicking on the globe icon on Zoom. Do any Members have any declarations of registrable interest that they wish to share?

I don't know that it's registrable, but, as people are complaining a lot, I belong to lots of cross-party groups relating to cancer.

Thank you. Yes, I belong to some that cross over into, but they're all on the official record.

I know, but people are putting complaints in fairly regularly now, so I try and declare. No-one's ever got into trouble for declaring.

Thank you. Right. Yes, I think I'm a member of the cross-party group on cancer, so perhaps I should say that.

The committee will be considering a letter in private later in today's meeting to reflect on whether we wish to take forward the work of the COVID-19 inquiry special purpose committee. This will be considered in private at this stage, with further communication to follow, depending upon what we agree.

We have a paper to note from the Chair of the Climate Change, Environment and Infrastructure Committee in relation to Welsh Government staffing. The Chair has written to me as Chair of this committee raising their ongoing concerns about the Welsh Government's staffing capacity and their ability to deliver on their programme for government commitments. The letter urges us to consider whether the Welsh Government's workforce planning is aligned with their programme for government priorities, what impact staffing problems are having on key policy areas such as biodiversity and marine policy, and what the governance and oversight processes are for allocating resources and staffing within the Welsh Government.

This committee has previously undertaken in-depth scrutiny of the Welsh Government's approach to workforce planning, including a specific evidence session with officials, following publication of the Auditor General for Wales's report on Welsh Government workforce planning and management. We've also considered many of the issues raised in the letter as part of our annual scrutiny of the Welsh Government's annual report and accounts. I therefore suggest that this committee consider any further workforce planning issues as part of that scrutiny, and consider if there are any related issues that the committee could reflect on in our legacy report. Members, do you have any comments on the letter, or are you otherwise content to note?

Content to note.  

Thank you. I think that's general contentment. 

Adam, sorry. 

We can do, yes. If you can take a note. Thank you.

We have a further paper to note, being a response from the Welsh Government to the Audit Wales report on the Wales infrastructure investment strategy, a report that made 11 recommendations. All of the recommendations have either been accepted or accepted in principle. In using that term, 'accepted in principle', again, I remind committee of the concerns our predecessor committee raised around its use, and the commitment by the then Permanent Secretary to stop using it in 2018. However, they have all been accepted or accepted in principle. We will receive a briefing from Audit Wales on this report later in today's meeting, when we'll have an opportunity to discuss any further work on this item. Auditor general, would you like to comment on the Welsh Government response?

I won't go into a lot of detail, Chair, as we're, as you say, going to talk through it in more detail in private, but just a general comment. I think we found some of the responses a little woolly—they could have been more specific—and quite a lot of the deadlines are some way off. So, I think there potentially are some areas that the committee may want to keep in mind and revisit in the coming months.

Thank you. Members, do you have any comments at this stage?

Just a general comment: I think that nine of the 11 were fully accepted; the other two, one of them said there is further work to be done. I just think back to the last response we had, where we were ignored completely, so it's certainly progress on that, and, yes, I think it's a reasonable response.

Okay. Well, we'll have an opportunity, as I say, to discuss it later, and look at any particular content that Members may wish to focus on. Well, if we could now, I suggest, take a break until 09:35, that would give us time to prepare for our evidence session on cancer services in Wales with Public Health Wales. So, can we go into private session, please?

Bore da a chroeso. Good morning and welcome to our witnesses, who have now joined us for this evidence session. I would be grateful if we could begin with you stating your names and the roles that you hold, in whichever order you choose.

Maybe if I start—. Bore da, pawb. Nice to see everybody. I'm Tracey Cooper, chief executive of Public Health Wales. 

Good morning. I'm Louisa Nolan, head of data science.

Hi. I'm Ilona Johnson, a consultant in public health and interim director of health improvement in Public Health Wales.

Bore da. I'm Sharon Hillier. I'm a consultant in public health and the director of the screening division for Public Health Wales.

Diolch. Thanks very much. Thanks very much for attending. We have a number of questions, as you might expect. I'd be grateful if Members and witnesses could be as succinct as possible with the goal of getting through those questions. As convention has it, I will start with those, as Chair, with a very general question. What are your overall reflections on the issues identified in the Auditor General for Wales's report in relation to national leadership to improve cancer services and to prevent cancer occurring in the first place?

Chair, if I may, and I'm sure that colleagues will want to join in. First, I think it was a very helpful report and, as I'm sure you'll have heard from other witnesses as well, it resonated with our experience. Well, certainly, speaking personally, it resonated with our experiences, not only as an organisation, but I was a designated lead, the chief exec lead, for the NHS for a period of time over cancer services. As chief execs, we have areas of non-communicable diseases and cancer that we lead on. Also, with that perspective, the way that the report describes the complexity and some of the confusion that existed, I think, was particularly apparent over the last couple of years. While I think that things have improved—. Certainly, with the establishment of the national cancer leadership board, which brings everything under one umbrella, one would envisage a consistent drumbeat there on policy priorities, delivery, evaluation and measurement, and I would expect things to improve.

As Public Health Wales, we host the former NHS Wales Executive, now NHS Wales Performance and Improvement, and so, obviously, we interact with the NHS executive. Similarly, the report articulated some of the confusion regarding the role and the function of the NHS executive, and how it supported the NHS and interacted with the NHS. I think that is getting better, but certainly, at the time of the report, which obviously looked back a number of years, I think that it was challenging for the system to be clear on what the offer was because of some of that confusion.

I also think that the emphasis around clinical leadership was really important in there, and of course, you will be hearing from us around prevention. The demographics that the report outlines—and similarly, what we submitted to the committee in April—show that if we continue with the projections that we have, particularly for age-related cancers, but also for non-communicable disease otherwise, we will have a real challenge in having a sustainable health and care system. And with the 40 per cent of cancers that are avoidable, prevention is fundamental. The point that the report made around the priority, the strategy, the planning, the accountability on prevention, I think, has got better, but it is something that we really need to accelerate over the coming months and years, because it is not a choice. It will be essential for us. So, some initial reflections.

Thank you. Would anybody else like to comment or add to that? No? Okay. Why do you believe that cancer survival in Wales, health inequalities and access to services compare poorly to other higher income countries?

Did you want to take that one?

Yes. So, survival is related to both incidence—. Sorry, mortality is related to both incidence and survival. So, we have increasing incidence because we have an increasing population and an increasingly ageing population. That's part of it. But also, around the survival—. Part of the incidence—sorry, to go back to the incidence—is also about those risk factors. Tracey has already mentioned that four in 10 cancers are preventable. If you look at some of the big factors around things like obesity and smoking, those are big parts of that incidence. And then, on mortality, there are a number of factors in that. Things like access to services. Sorry, may I just look at my notes here?

If I could build on that, while Louisa is checking, again, the report touches on it. We have got a relatively higher ageing population in Wales, and where we're seeing the increase in cancers, they are predominantly age-related cancers. As Louisa has just alluded to, access to diagnostics. As we know, the clock starts at that point of suspicion, a definitive diagnosis then on to treatment is key, and we've got delays in the different stages of the pathways. Of course, those delays are different for different cancer pathways, and are different for any given pathway in different parts of Wales. So, that accessibility to diagnostics, particularly, is a really key element. Again, we're no different from any other country with some of the challenges for workforce, which of course is the time between diagnostics and treatment. So, those are really key elements for Wales, and what we sent you through in April just shows how we compare within the UK, but also more broadly in the EU. But, did you want to build on that?

Yes, thank you. Thank you, that was what I was going to say. I think as well as the ageing, there's also deprivation, which can lead to higher cancer incidence. Deprivation in Wales, compared with some other countries, is quite variable. For lung cancer, for example, two out of 10 deaths from cancer are from lung cancer. Although lung cancer has been falling in men quite significantly, by about 38 per cent over the last 20 years or so, in women, it's not falling quite so fast. And of course, one of the things that we want to do to tackle that is around the lung cancer screening, which my colleagues can probably talk more about.

Please, yes. Dr Johnson, were you going to comment?

I think there's something within cancer that actually we do need to recognise: that there is a time lag. There is time; the world does change. When a number of people were exposed to things that were in the preventable space, that exposure was some time ago. So, when we look at the landscape of what we see now, it's a reflection of what happened and what people were exposed to. It's a multitude of factors over time. Actually, what we're looking at now is a reflection in our landscape of what was in the past. It's just acknowledging that there is a time lag in terms of what you see in terms of cancer. But, as we say, early identification and those elements and the way we identify cancer has changed over time as well.

Thank you. You referenced the higher incidence and growth rates amongst the older population. I'm going to be co-hosting, in the autumn, an event here focused on childhood cancer, which includes issues around health inequalities and the failure to diagnose because they're young and the statistical incidence is lower. What patterns do you see there? Is that also a growing area? Is it flatlining, or is it getting better?

We haven't done a lot of work on children and young people and cancer, because the numbers are—happily—relatively small, so it makes it more difficult to dig into that. It's fairly flat, I think, as far as we know. But one of the things we want to do—. We're doing some work in the SAIL database to link census information to cancer, because we do track this through the cancer registry, and I think one of the things that we want to do in that work is to look, in a bit more depth, at children and young people and cancer.

Okay, thank you. The Welsh Cancer Intelligence and Surveillance Unit's technical briefing on the description of variation in survival outcomes between services and different health boards raises a number of matters. Can you elaborate on that, and particularly where and why the variation exists?

That's really interesting. We've just published our first tranche of results from this work that we've been doing in the SAIL database, linking cancer incidence to census information, which gives us some really interesting insights into variation and what's driving some of that variation. I think you have access to that report. 

But some of the striking outcomes from this are that there are some differences with ethnicity. So, for black people, there's a higher incidence of prostate cancer. For female breast cancer, it's higher in Asian people. There are some differences in ethnicity around stage of diagnosis. So, for example, mixed ethnicity has the highest proportion of stage 4 diagnosis, and Asian populations have the highest stage 1 diagnosis.

But then, related to income, we looked at overcrowding, which was quite significant. So, for people who live in homes with fewer than the required number of bedrooms, there's seven times higher incidence, once you've corrected for age and for sex, than for people with more than two or more free bedrooms. It's probably not the rooms themselves that are driving this. That's probably related to income, and that's about that variation in income and in deprivation across Wales. We're continuing this work. We're going to link to the census 2021. There's more that we want to do on this as well.

When you mentioned ethnicity, that appeared to suggest—and tell me if I'm wrong—that was more to do with genetics, DNA, whereas the second issue you highlighted is more to do with environment and socioeconomic status. Where do the two meet? How much of this is in the genes, and how much of this is environmental?

It's an interesting question. We can't tell from what we've done so far how much of this is genetic and how much of this is entrenched inequalities around different ethnicities. So, we can't separate that out completely in the work that we've done so far. Of course, in the future, what we'd really like to do is link the cancer data to the genomics data, which will give us a much clearer picture of some of this.

Can I just build on that? It's the first time that we've connected the SAIL database, or been able to, together with our cancer surveillance. Adam, I noticed your face when we said 'seven times higher in overcrowding'. I mean, that finding is significant. We published it at the beginning of June, so it's still early days. The issue is: what do we do about that?

And on your point about genetics, obviously, we've got Genomics Partnership Wales and how we use epigenetics, because we know, obviously, there are some cancers that are genetically connected, and some of them are more familial connected. But this may be a contributing factor to some of our entrenched challenges around inequalities in Wales. So, that is a bit of insight that we have really got to understand further. Because if we're going to do what we said earlier, which is create a healthier society, and Ilona's points that we're measuring a lag, it's even more important that we start in childhood and pre pregnancy, so that we create the generations going forward that do not have the incidence of cancer that we have now. But that report—I think we did share it with the committee, but we can share it again—is a really insightful picture of what's happening at the moment.

Okay. Thank you. What intelligence, if any, does the Welsh Cancer Intelligence Surveillance Unit—I don't know whether you normally call yourselves WCISU—

WCISU, yes.

—have to explain why there is such variation—it's developing on the answers you've just given—across health boards in stage at diagnosis for some types of cancer, and whether you feel NHS Wales, therefore, is effectively using the information you provide to improve services in that context?

As Louisa's outlined, there's something about the population—the population that a health board serves. Because, obviously, there are some commonalities, but there are some health boards that will have perhaps different challenges. And just what we've talked about, the socio—

Demographic.

Thank you. The sociodemographic findings, I think, are really key.

But I think the second part of your question is—. Health boards have different services, as we know. If you look at Hywel Dda compared to Cardiff and Vale, the types of—. And accessibility of diagnostics, for example. We know, where there are regional diagnostic centres where we're pooling capacity, patients are getting a timelier and better experience. Where that isn't the case, it's taking longer for patients to get to a diagnosis and then on to definitive care.

Some parts of Wales are having more difficulty in recruitment. We run all of the microbiology services, pretty much, apart from two areas for Wales, and we've had an intractable challenge in recruiting consultant microbiologists into north Wales. We have challenges with recruiting radiologists, which we'll hear in a minute, in Breast Test Wales, into north Wales. So, some health boards will have different challenges around recruitment than others.

The standards are the same for everyone, and I think the issue is how much efficiency, effectiveness that a health board is currently adopting, and there may or may not be room for improvement. I think that's where the NHS performance and improvement kicks in, and as we know, that provides—I think they are changing the terminology—performance and assurance accountability on behalf of Welsh Government and the monthly meetings they are having with health boards to understand the challenges. But also Improvement Cymru, which used to be part of Public Health Wales, is the NHS improvement service. They're going in alongside health boards to try and understand where efficiencies are.

What I would say, though, is I think it is more difficult for some health boards than it is for others in terms of attraction, but I do not think there is any excuse for any of us not to be efficient and effective and continuously improving. To me—you were talking about the architecture earlier—that is the role of NHS performance and improvement, to really start to understand and showcase where good practice exists to learn within and between. I think identifying tangible cause and effect differences is a bit of a challenge.

How is relative performance, if at all, impacted by those parts of Wales that access cross-border services? Many of the populations in the east, in particular, do access cancer services at specialist centres across the border.

We're probably not the best to answer that, and if we have answered it, it may not be correct. However, it may be worth giving the experience we have around our AAA screening programme. We run the abdominal aortic aneurysm screening programme, and of course, vascular services in north Wales feed into England. Is there anything, Sharon, you wanted to add on that? 

To answer on the cross-border aspect from the screening perspective, we are really clear what our border is between Wales and England, so we are making sure that we are inviting people correctly for screening. That is actually quite a bit of work with our colleagues in England, to make sure that those cross-border pathways work, especially on cervical. That is a very large 25 to 64-year-old invitation to women, and they move. There are a lot of women who move across, so we work really closely with the English programme to make sure we are making that pathway work all the time. Although that works, it is a lot of back-of-house work in terms of doing that.

In terms of the AAA screening, which I know isn’t cancer, we have been working really closely with BCU, because they have changed their clinical pathway for people with open repair for AAAs, and that is actually going out to England. Again, we have gone to the hospital that they refer to, to make sure that we are content with the quality assurance around that, and we have worked really closely with BCU. We know the specialist aspects for cancer sometimes will go out to England. We are not responsible, especially from a screening perspective, in terms of that, but we are really mindful to make sure that those cancer pathways are completed.

Thank you. Just very briefly, if you could say one or two words, when we talk about variation, are those health boards that are more dependent on that cross-border service provision performing better, worse or similarly on that spectrum of variation? 

Because the cancer pathway, in terms of that diagnosis, is mostly within a Wales context, from my understanding, and I think it is the tertiary bit sometimes in terms of that pathway, I am not sure we are best placed to answer that aspect of it. Apologies.

Thank you. Between 2019 and 2021, a large number of patients whose stage at diagnosis was unknown were identified in Powys Teaching Health Board in general, and also for female breast cancer patients in Aneurin Bevan University Health Board. What factors, if any, do you believe may explain that? 

Sorry, Chair—do you mean they were classified as unknown? 

Yes, there were a large number of patients whose stage at diagnosis was classed as ‘unknown’.

I would want to verify this, but I would imagine that this is part of the problem with recruiting clinical coders and some of the data quality issues that we have had. I do not know that for certain, but that would be the likely explanation. Basically, the quality of the data collection, the time it takes to do that and having enough people to do that.

There has been—I'm sure it may have been discussed previously—a real challenge around clinical coders across Wales. Of course, they are fundamental, because how can we assure ourselves in running a service, knowing the needs of our patients and how efficient and effective we are, without coding not only what the diagnosis of the patient is, but also that patient's episode as they pass through, or further diagnosis is developed. We've had a number of discussions at the NHS leadership board—which, as you know, is chief execs of the NHS and the exec team of the health and social services group—around the gaps in clinical coding. So, yes, that may be it. It's a concern, because how can we really understand someone's disease progression. And, of course, without the coding, it's difficult to track through the outcomes and whether the treatment was successful for people. I would concur that it sounds like it's probably a coding issue, which is concerning.

Given the previous comments about cross-border services as well, Powys, of course, is generally dependent on services across the border. Mike.

On coding, I think this is probably one of your biggest concerns, because not knowing what it is, you can live with, but people putting in the wrong ones in order not to leave it blank or leave it as unknown probably makes matters worse. I worked in this area. It's incredibly difficult, because you are relying on coders to get information and code it efficiently. What checks do you do on the codes?

There is a lot of work that goes into this. We have the clinical coders who work in the health boards. There is, in fact, a new cancer data collection—the cancer informatics service, that has just started up—that has implemented some national data standards that we hope will help with some of that quality. The people who work in the Welsh cancer intelligence and surveillance unit on the register spend a lot of time checking the data, going back, asking questions. This is part of the reason it takes a long time to go from getting the data into the publications. There's a lot of manual labour put into that to make sure it's right.

I much prefer accuracy to timeliness.

It's a trade-off.

Chair, can I just come back? I'm still reflecting on your question. There's a possibility that one of the reasons why they are classified as unknown is the interoperability of the information systems. Depending on what amount of treatment they've had in England, it could be that that data isn't tracked through, which is why it is classified as unknown, possibly, but that should be reconciled back, I would suggest. That may be a reason for it as well.

Okay, thank you. What, if any, lessons from international approaches to improving cancer can you identify that could or are being considered by the Welsh Government, NHS Wales or both? Particularly, what role do you believe Public Health Wales has in sharing such lessons?

Shall I kick off and colleagues may want to come through? A number of years ago, when I was chief exec and nominated lead for cancer, which was nearly two years ago, there was a group from the Welsh Government and from the NHS in Wales—I know you had Professor Tom Crosby here recently—that went to Denmark. Denmark is heralded as being a country that accelerated improvements in outcomes for cancer services. The experience for Denmark made quite a big difference to the policy changes and the introduction of the single cancer pathway in 2019. The models around detecting cancer early, rapid diagnostics—a lot of that has been taken from the experience in Denmark, and that continues. There was another trip to Denmark last year looking more broadly not just at cancer services, but also about the delivery of NHS and how it can be more effective, based on the Danish model. I think, from our perspective, lung cancer is an interesting one around learning. Sharon, do you want to kick off with that?

We're delighted that the Welsh Government have announced that they're going to support us to introduce the national lung cancer screening programme; we're absolutely thrilled. But I suppose it is reflecting on the journey to get us to this position. That was a UK National Screening Committee recommendation, but it was based on randomised controlled trials that were undertaken worldwide and then fed in, in terms of that consideration. Also, we've worked really collaboratively across, so working and learning from Australia in terms of that work going into England, and then learning from England who've undertaken pilots as well. So, that information and understanding has really instilled how we will take forward that lung cancer screening. It's not something that has just been within Wales in terms of how we're doing that piece of work.

Thank you. Sorry, did you wish to comment?

Just to say that, in term of preventative approaches, we do draw from other countries similarly in terms of obesity prevention and other mechanisms that are seen to have an impact. So, we draw that learning into our work within Public Health Wales.

And we are a World Health Organization collaborating centre on investment for health and well-being. The particular focus is health equity. We engage, particularly through the Venice office, and particularly in the European region, around learning lessons and also sharing around how you can embed equity in the delivery of health systems, but also cross-government policy as well. For us, public health is a porous sport, so we have to learn from other countries, and the art is bringing it back into Wales and seeing changes happening in Wales as a result of proven evidence successes in other countries.

Thank you. I invite Hefin David to take up the questions, please.

Diolch, Cadeirydd. I'd like to explore the issues around the gathering of data. Because we know the auditor general's report looked at some problems with the quality of some of the data from NHS bodies used for the cancer registry. In that regard, are those problems still in existence, and what factors are causing them?

I'll take this one. I think there are a few factors. We've talked a bit about the difficulty in recruiting coders—so having enough people to do enough. We have the new cancer informatics service, which is implementing the national data standards, which we think will help with some of this, because they're standards that should get all of the health boards being consistent across the reporting. From the clinical coding, we then have a bit of a backlog, and then we get that quite labour-intensive process, to go from the data that we get in to making it suitable for the register, so that we have this gold standard that we can use that is suitable for international comparisons and what we base all of our analysis on. We are just about to start work on the first tranche of data collected through the new system. New systems always have teething problems, but I think, as we work through that, we'll understand better how the quality has been affected by that. I believe there are some recommendations around that already as well.

With those recommendations in mind, we're at the point where perhaps recommendations are demonstrating a failure in a system. Has the Welsh Government done enough to hold NHS bodies accountable for that poor data quality? How did we get to this point?

Do you want me to answer that? That's a really interesting question. To be the DNA of running a service or an organisation, you have to have the data, because if you haven't got the data, how do you know if you're managing it, how do you know if you're delivering what you need to, and how do you know where to improve? So, I think there's a responsibility on all of us as organisations. And just on Louisa's last point, we're also reviewing our own internal timeliness, and we're going to be publishing something later in the year, so we can share that with the committee.

I think there's a given, firstly, that organisations should have in place effective systems. I think when there is then a collective challenge around—. We talked about coding, but it's also about culture. A lot of population of data, and particularly where there's a change in system, is about culture and whether individuals find ways through so that they don't have to complete the fields. I think where that's the case, it's how do we use the mandation of fields so that people cannot go on to complete records without having completed the essential fields that will enable that data to assess how we're delivering.

I think then, when we start to look at the data that—. Because data should only be collected to improve outcomes and measure performance. There's no point in collecting data if it's not going to make a difference. So, I think, then, it's the Welsh Government's approach and process to hold to account organisations, all of us, in the delivery. But, yes, I see the accountability of data being part of that, because it all links.

So, are you saying that some of the data gathered isn't useful data?

No, no, I'm just saying, in theory, the data that we gather, if we've put it in as fields, we're deeming it to be really important information. So, we have to collect that information, because otherwise we wouldn't have said it was important. In the absence of that information, how on earth do we know how we're managing the service? I'm just reinforcing the importance of it being populated.

It has been a discussion a lot at the leadership board. When I say 'a lot', we've had the people who are leading a programme to improve clinical coding, which Welsh Government established, in a couple of times to us, giving a progress report on where we're at. So, I guess—. I think there's a responsibility of organisations in their own right, in the delivery of services, and then I think, insofar as every other aspect of how a health system is run, yes, obviously the Welsh Government has a function there, and I just can't separate—. Without the data, we can't demonstrate that we're delivering effective services. So, it is all about the accountability of delivering good cancer services, because I can't separate the data from that, if that makes sense.

Okay. At the time of the auditor general's examination, the data was a year behind publication compared to England. Are we now in line with England?

We aren't yet. England published data for 2022 in October, I think it was, and we will be publishing ours. We've just finished the QA in the register for that data, and we will be publishing our update on 2022 in October this year.

You're still a year behind.

We're still a year behind, and part of the reason we're behind is the issues around quality and the manual input to then check that quality and make sure we have that good-quality data when we come to publication. But we have done some other things around timeliness. So, we started publishing the incidence from pathology results. So, that's not the same as cancer incidence; it's diagnostics that come through pathology. But the trends are pretty good at the high level in matching the trends of cancer incidence. We have published that up to—I think our most recent date is January 2025.

When will we be in line with England?

So, we will be publishing a plan later this year on what we're going to do around timeliness. We have some opportunities in some of our technical developments in the cloud and the national data resource, to look at further automation and streamlining some of the process. We also have the possibility to look at—. We've talked a bit about the trade-off between timeliness and accuracy, whether there's room for thinking about that trade-off and thinking about whether we can publish things a bit earlier, as well as speeding up the processes that we do.

Are you suggesting that Welsh data is more accurate than English data?

No, I don't think I would suggest that.

Okay. So, when will we be back in line with England, do you think? 

We'll need to put that into our plan that we will publish later this year. At this point, I wouldn't want to speculate without having done a bit more work thinking about those new opportunities in the automation and the digital space about what we can do to help, how we can automate some of those manual processes, and whether we can bring in any artificial intelligence to support some of those processes. But until we look at that, it's hard to say. We've got quite a big backlog to catch up on as well.

That's a fair enough answer, but when will you be able to give the committee an answer on when we'll be in line with England?

Can I just add, because we don't directly populate and code, we are controlled by the quality of the data that comes to us? So, if clinical coding was even at least 85 per cent or 90 per cent of an acceptable quality and complete, that would speed up our surveillance registry processes. Because it's not there yet across the NHS to the quality that it needs to be—and we've talked about that some of that's about resource, some of that's about culture—then it slows us down. If we can move the NHS to an efficient, optimum, higher quality coding, then it speeds up our end of the process. We're kind of interdependent with the quality of the coding at source, if that makes sense.

Yes, I completely understand that, and the difficulties you face. I suppose what I’m getting to is: when will we know that this is about a target? When will we know that you’ve got a plan to be in line with England? So, not necessarily when will you be in line with England, but when will we know that you’ve got that target date to bring things back in line?

 We'll publish that plan by the end of the year.

Okay.

And we'll send that in to the committee and we'd be happy to come back along and have the chat again, if that's useful.

Yes, that's very helpful, thank you. And are there any other issues affecting the availability, quality and timeliness of data on cancer incidence, survival and mortality? You've talked about those issues of culture and availability. Is there anything else you want to say on that?

Probably I'd like to mention our access to primary care data, particularly around ethnicity. We still don't have access to primary care data, and not just for cancer, but it makes it quite difficult to do things like measure the uptake success rates of screening, for example, bringing in some of those other factors, like ethnicity, and do our surveillance and monitoring well. We anticipate that the NHS app will solve at least some of these problems, and we should have some ethnicity data through there. And Welsh Government are in the process of investigating access to primary care data as well. This would be a big help for us.

Can I build on this, Chair, if that's all right? Primary care data is so fundamental, and it's kind of treated in a cosseted way within the primary care sector. So, we'll be talking about prevention in a minute. Prevention isn't just a one-size-fits-all. It's also about risk stratifying your population and then being able to undertake targeted prevention engagement awareness programmes. And the fundamentals of that is data that's incorporated within primary care. So, if we're talking about risk stratifying patients who may be at risk of flu or risk stratifying patients who may have more of a vulnerability around some healthy behaviours, there is a gap in access to that primary care data. So, as Louisa said, this has come up a lot in conversations recently that Welsh Government are looking at what they need to do, what the mechanism is, because there may be some legal aspects of that. But it goes beyond cancer. It really is about understanding our populations as well.

That's very helpful, thank you. Can I just move now on to diagnosis and screening, and screening particularly? There are concerns about a relatively low uptake of, particularly, breast and cervical cancer screening, and also bowel cancer screening. What are the latest figures, and are we seeing an improvement in uptake?

Thanks very much. So, with breast screening, the target for breast screening is 70 per cent, and the latest figures are that they're at 69.6 per cent uptake, so we're just under the uptake that we're really looking for. With bowel, we're over the expected uptake and coverage, so that's 60 per cent. We're on 64.5 per cent. And our cervical screening is below the target. So, historically, the target for cervical screening has been 80 per cent. Interestingly, with the World Health Organization target for the elimination of cervical cancer at 70 per cent—having a cervical screen at 70 per cent by the age of 35—we do hit that target. But our current coverage is 68 per cent, in terms of the population being screened. Now actually, the coverage that we do for cervical needs re-looking at, because you may remember we've changed the interval for offering cervical screening to five years, if you're human papillomavirus negative, and that was back in 2022. And we're still looking at our target of offering within three years, so there's a piece of work that we've got to do around looking at our coverage rates. But it is just under what we want in terms of cervical at the minute. That's our overall uptake.

So, the next question to that would be: what are you doing to improve the uptake?

So, going back to what we know, we know, in terms of our population, some demographics of which people take up our offer and which people don't take up our screening offer. And it won't be a surprise to the committee that it's about deprivation, it's about age. So, our older population take up their screening offer more than the younger population. In the programmes that are to all people, women take up their offer more than men. And there is some geographic variation, but it's mostly about that deprivation aspect. What we can't do is describe it in terms of ethnicity, so it goes back to the question that we don't have a routine way of describing ethnicity, but that doesn’t mean that we’re not doing things around that.

So, what we’re doing, really, is we’re looking at the factors of why people don’t take up their screening offer, and we do this in various ways. We’ve got a screening engagement team that work really closely out in our community on understanding the barriers. And we also will undertake some particular qualitative work. So, we’ve done some qualitative work, with Beaufort Research recently, about cervical screening. And it’s not about not knowing, it’s not about lack of awareness. It’s barriers such as feeling embarrassed, feeling worried about going for their screen and difficulty getting their appointment with a general practitioner.

So, our main focus around the work with screening is about behavioural insights. It’s about providing information to people in a way that’s a call to action, and building up on that information we’ve got around barriers. So, we’ve got quite a few interventions in place to address some of those barriers, and that’s all around a reducing inequity strategy that we’ve got in place in screening. We’ve monitored this—[Interruption.] Sorry.

I was just going to say, some of the factors you’ve mentioned are down to the individual, such as the discomfort and embarrassment. But the one that rang alarm bells was the inability to get appointments with GPs. Is that having an effect on screening, the failure to get an appointment with a GP? Is that a big thing?

So, we’ll collect that information. Sometimes we’ll get phone calls from women saying they’re having difficulty, and we’ll work with the GP practices around that. So, if we’re getting any messages through around that, we’ll work with the GP practice. I think sometimes it’s barriers personally to try and make that appointment, really, as well. But if there are any issues, we’ll address those.

Yes, I just want to be clear on that. 

I'll just bring in Mike Hedges for a supplementary question and then bring you back in afterwards. 

You’re talking about collecting data, and you can collect it by health board easily, but that in itself doesn’t tell you very much, does it? Because if you look at Cardiff, for example, you’ve got Ely and Lisvane—entirely different populations. Can you get it at either lower super-output area data, which would be much more helpful, or, if not, at least the first part of the postcode?

So, yes, just to answer that, GP cluster data is what is really, really helpful. And it picks up that smaller area, really. So, we also share our screening data in particular—our GP cluster data—with the GP clusters.

Okay, thank you. 

Hefin, we'll come back to you.

Can I just come back to GP appointments? I just want to make sure that we’re clear on this. Is this a systemic problem with GP appointments that are causing people to not go for screening, or is it just one or two one-off things that you’ve picked up through the reporting?

So, it's not a systemic issue, but you may be aware that the UK National Screening Committee has very recently recommended to look at self-sampling for underserved populations, so those that haven't necessarily taken up their cervical screening offer. And that's very recent. So, we're going to the Wales Screening Committee next week to consider that recommendation, because we very much want to take that forward in Wales, because that will obviously address making that initial appointment with the GP, so it might improve accessibility, and also it may address some of the other barriers that we know about in terms of embarrassment as well. So, that's one of the key things that we're exploring.

Okay, that's very helpful. And what role does Public Health Wales have in securing timely colonoscopies for bowel screening patients? Do you have a role there?

Yes. So, on the bowel screening programme, we’re responsible in the bowel screening programme up to the point of a bowel cancer. But that doesn’t mean that we deliver all of the pathway. So, we deliver the screening test, and it’s really good to know that, in Wales, we’re offering 50 to 74-year-olds at the lowest cut-off. So, we’re really in line with the UK NSC recommendation. Ourselves and Scotland are the two countries in the UK that are offering that, and that’s really exciting for us to have that offer in place.

So, we’re responsible to that point of cancer diagnosis. We do the screening test. Once there’s positive faecal immunochemical test, then those people are referred to the health board, their local health board, for an assessment and a colonoscopy. We commission the health board for that colonoscopy. The timeliness of the FIT test is 100 per cent. The lab actually get really disappointed if they’re not doing that—the post that arrives is all tested on that day. But it's the timeliness, then, of that colonoscopy where there is variation across Wales, and actually we're not hitting the target that we've set at four weeks across Wales anywhere. There's a range, and it's uncomfortably high in some of the health boards. So, we're not delivering but we are commissioning and we're working really closely with the health boards to reduce that time and that wait, because we know that it causes anxiety—

Yes, sure, and that's really welcome to hear. Do you have an idea of the reasons for that variation?

So, we have increased the numbers of colonoscopies required in Wales, because that's actually what you're going to do when you offer the whole population who is eligible for it and people are taking up that offer, which they are. So, we know that we've increased. But, interestingly, the timeliness generally of the colonoscopy has improved over the years. The fundamental issue really is that there are not enough substantive screening colonoscopy lists in place in the health boards. The health boards are working really, really closely, really, really well, but in the whole system—and screening is one part of that system; symptomatic aspects are going in as well—there isn't really enough endoscopy capacity in our system in Wales, which is the issue. 

Also, we're increasing the numbers of screening colonoscopists. So, these are people who are accredited to undertake those colonoscopies, but they also have different parts of their jobs to undertake. So, sometimes they're diverted to different aspects of their job, and some of the health boards are relying on insourcing as well to have that capacity in place. But I think it's a reflection of the whole endoscopy capacity that we have in Wales, and we're competing for it. 

If you go through the screening route, because we've undertaken that FIT test, your cancer yield is higher than symptomatic. So, about 7 or 8 per cent will have a cancer diagnosis, but it's important to note in that preventative space that over 70 per cent of people who we refer to colonoscopy through the screening route will have pathology. So, they'll have at least one polyp that's removed. When you think that cancers will develop mostly in a polyp, then we're doing that preventative piece going forward of reducing their risk of bowel cancer, going forward. 

Can you, just as an idiot's guide for me, give me a very short explanation of the reason for the variation across Wales? I'm not sure I fully followed your reasoning around the variation. What's accounting for the variation in Wales, in very simple terms?

I think that the variation in Wales is really—. We know how many people are going to come through on the screening route, and the health boards have had that data, and they've had that data for a while. And that is financed. Welsh Government money is coming through and supporting that financially, but there aren't sufficient accredited screening colonoscopists; it's probably endoscopy theatre space; and we're not backfilling. So, we don't have those substantive lists in place that will keep that flow going through. 

And in some parts of Wales there are fewer.

Yes.

Right. Okay. That's really helpful. Sorry if I sounded—

No, sorry if I didn't explain it clearly. 

No, it's fine. You probably did, it's just my understanding. So, would it be helpful to have national measures and performance data on the timeliness of diagnostics and treatment for patients referred from breast and cervical screening programmes?

Yes, so we have that data. We have standards within the screening programmes. I think that what we're missing—and this was brought out, really, in the audit report—is that it's not visible. It's not very visible in terms of that screening pathway route. And I think that seeing things in the whole and that visibility would be really, really helpful. But there are standards there. So, on the national optimised pathways that are in place on cancer, it's all clear where the screening pathways come in to that, at that point of suspicion. So, they are part of that 62-day target, the diagnostic bit as well. So, it's clear where they should be. I think that the way that we work it is a little bit disjointed. You are not seeing the visibility of that screening route coming through in our all-one system. It's there, it's just not as visible. 

Work that we're doing on that—. So, the bowel screening, they've worked with NHS Wales Performance and Improvement, and they've just recently implemented a tracker. So, all the health boards can see really accurately the FIT positives that are coming through, which is fantastic, because the visibility is there. And also, we're just starting that work on the breast, so that visibility is better. 

Okay. That's really helpful, thank you. I'm very grateful for your answers. Thanks, Chair.

Thank you. Mike Hedges.  

I want to talk about the lung screening programme. I'm sure you want to talk about it as well. The success of the Rhondda initiative is now being rolled out to the rest of Wales. And without putting words in your mouth, you probably believe that having these small trials in areas, and seeing whether they actually have a major effect, is very useful for cancer. How easy is it going to be to extend it to the rest of Wales? Because I belong to the cross-party group on cancer and the cross-party group on lung, and we are very pleased with what's happened in the Rhondda, looking forward to it being rolled out and the number of lives it will save. Again, I'm sorry, I'm not trying to give your answer for you—

You're doing a really good job.

How are we going to get it out to the rest of Wales? Are there other cancer events, like the lung cancer initiative, which could also be trialled in a small area? Can I put Swansea forward as an example? It could be trialled in a small area, so that we can see whether it works or doesn't. So, congratulations; thank you. And really, it's about how we expand on lung cancer, and how do we do it for others?

Yes, okay. Shall I take that, Tracey? 

Yes, please do.

So, yes, we're very, very excited. Yes, it was a great weekend when that was announced, so, brilliant, thanks for that. The trial that was undertaken in the north Rhondda area was excellent, because what the trial were able to do was actually make sure that it worked in practice around—. Sorry, I got distracted then. So, it was just to make sure that it could work in practice and that it would work in Wales as we expected it to work. So, the trial wasn't to prove that lung cancer screening is cost-effective or that it was clinically effective—that had already been shown in other areas—it was just to make sure that we understood how it performed, and it was word on the ground. So, we were able, again, to bring the learning from England, working again with our screening engagement team in terms of how we communicate, and the trial did perform as we expected it to. So, that learning has gone now into that national planning. 

So, Welsh Government asked us back in April 2024 to produce a report and a piece of work that could show how we could do a national programme in lung cancer screening in Wales. So, that's been undertaken and it's been submitted to Welsh Government in March 2025. And that's our plan. Now, the plan that we've put together isn't a plan that Public Health Wales has put together; it's a plan that everybody across that stakeholder piece has put together. So, we worked really closely with the health boards; we worked really closely with the third sector; we worked really closely with smoking cessation, because that's going to be a really important part of this work—it's that prevention part of this to stop smoking.

So, the way that we've done that planning is to go out to health boards and say, 'Well, how can we do this? What capacity do you have? How should we do the plan?' And, actually, it's become very clear that there isn't a lot of capacity in computed tomography scanning in Wales. So, the plan in terms of the roll-out will be that Public Health Wales, similar to the other screening programmes, will be responsible for calling people. They will then have their CT scan, read that aspect, and once there's a lung cancer diagnosis or suspicion of diagnosis, then it will go into health boards. Because it's just working to understand what's possible in the country. So, we've got a really good plan; it's a plan collaboratively developed. It's going to take work to deliver. This is going to be a real significant programme to deliver. But from looking at the evidence, it should shift us from 75 per cent of our cancers at late stage to 75 per cent of our lung cancers at early stage, and that's really exciting, because lung cancer is our biggest killer in Wales.

And I assume you also welcome the new CT scanner that is coming into Morriston Hospital, which should speed up diagnosis. 

Yes, absolutely, and it's something we're really mindful of: as the diagnostic pathway improves in Wales, then we can see how we can link in with them. I know, also, Cwm Taf are very keen to be potentially linking in with us around the diagnostic hub, so it's definitely a working piece that will continue to work with the system.

Thank you very much.

Thank you. I appreciate you've got to nip out to meet some people.

Just to conclude on that, why do you believe it took so long for decisions around that national programme to be taken, and what lessons could be learned in order to hopefully speed up such decision making in the future?

So, I think the decision making, in terms of the decision to go with lung cancer, actually, it was 12 months, really, from the piece of work that they asked Public Health Wales to do. So, that was a really significant piece of work, because what Welsh Government wanted to have was that credibility of, 'Well, what's the plan? What's the realistic costing of that, so that we can then take that forward?' And actually, 12 months to do that planning is quite a short time, relatively, to have that plan in place. I suppose there was the time before being asked to do that piece of work that maybe could have been shortened, going forward.

And will it be in future for this and other potential programmes? Lessons learned?

I suppose from our perspective, we were very, very engaged and very, very willing to do the work that we were asked to do. So, we would want to shorten that. We would be very keen to be taking forward work if we were required to, but in some ways, we have to be asked to do that piece of work, but we were working behind the scenes to be ready to do that piece of work.

And there aren't that—. For a population screening programme—and what we're setting up is that, so it's the pulling up of data of eligible members of the public through the GP system—there aren't that many other cancer screening programmes that we are not already running, or lung cancer brings us up to speed, because it's the evidence about the impact that screening will have on pulling stages earlier. There are some cancers that it's very, very difficult to detect early, because the symptoms are so subtle, unfortunately, that they typically present late, and screening interventions won't necessarily have an impact. And I could be wrong, Sharon, but I don't think there are any other cancer screening programmes that are around internationally where we would be looking for an early decision. Lung cancer is the latest, really.

Yes. I suppose everybody will be aware that prostate cancer is a significant morbidity and mortality across the UK, but that's currently not a UK National Screening Committee-recommended programme. So, I suppose that's one still to keep an eye on, whether that's something that will be coming in the near future. But really, the work around the cancer screening aspects in the future is about refining our cancer screening programmes. So, AI in breast screening is going to be a trial that's going to be taken forward in England, which we're keen to take part in. And then breast density is something that's going to be considered. So, actually refining the current screening programmes will be key to look at. But the big one I think everybody would like to have a screening programme for is prostate cancer, but unfortunately the evidence base of that making a difference isn't there currently.

I suggest looking at the debates we had on that in the Chamber two or three years ago, when we were campaigning on a multiparametric magnetic resonance imaging programme for prostate cancer. 

Yes.

Just concluding on this section, therefore: you referred to having to be asked, but Public Health Wales, I understood, also has a role in flagging up to Government and NHS Wales programmes that you believe are required. So, again, how can you learn from this to ensure that, before being asked, you're hopefully speeding up or encouraging Government and the NHS to speed up on their decision making for the implementation of such programmes? 

Yes, so I think we'd taken the lung cancer recommendation to the Wales Screening Committee some time before. So, there was a recommendation in principle about this aspect, so it's not that we hadn't flagged it; I think everybody was aware of it, it was just the co-ordination of then undertaking that national work.

Okay. Sorry, did I hear someone breathing in? No. [Laughter.] Okay. In that case, we'd better move on, the clock's running against us. So, I invite Tom to take up the questions. Tom Giffard.

Thank you, Chair. I just wanted to focus some questions, initially, on the cancer improvement plan, particularly around the development and monitoring of the plan. I know, Dr Cooper, you were chair of the Wales Cancer Network and would have been involved quite heavily in that. So, can I ask where the impetus for the cancer improvement plan came from and how NHS bodies and other stakeholders were engaged in that process?

Yes, of course. We were asked at the time by the director general to develop an NHS plan at the request of the Minister. So, the cancer network at the time, we had discussions with Welsh Government about, 'Is it a plan, is it a strategy, how strategic do you want it?' Obviously, we had the quality statement that was refreshed earlier in the year as well. And so, the focus was very much about a plan that helps implement the quality statement for cancer. So, already in place at that time with the cancer network were a series of fantastic groups. We had a clinical reference group that still goes, that's got lead clinicians from across the NHS who advise around pathways and next steps and challenges. And there was also an operational management group as well for the cancer service managers. So, there were a number of sub-groups that existed, as well as a third sector group. So, through the auspices of those groups and workshops and wider engagement, and the team commissioned some expertise of someone to also come in and help do interviews with services and individuals across the NHS. So, it was quite a rapid engagement.

There was also quite a lot of insight—the lessons from Denmark. We're very fortunate in Wales that we've got some superb clinicians who have very strong international networks as well. And we'd also, as a network, done quite a lot of engagement around what the priority should be. So, there were a number of pieces of intelligence, if you like, that were already fresh and in train.

So, that was pulled together based on a plan that focused on delivery now, not necessarily 10 years hence, that reflected the challenges that colleagues in the NHS were saying to us at the time, plus trying to stretch the ambition without it becoming a strategy, but to stretch the ambition of what we really needed to be delivering at pace to improve outcomes. So, if you like, that was the provenance of it and the design of it. It was very clinically led, and I think in any plan, you'll have some people who think it should go further, some who think it's absolutely right, and some people think, 'We don't want any change, thank you very much.' And there was a bit of a nature to that, I would say.

Thank you. You talked there about the development of the plan and, just for clarity, was the Welsh Government's role in that plan discussed and agreed at the time it was produced?

Oh, now you're asking. I'm trying to take my mind back. The request for it was obviously from our colleagues in Welsh Government. They were closely involved because they sit around the cancer network board—they did then—and so, they were part of the process. I think we assumed at the time that the plan would form part of the accountability system for the delivery of cancer services. Therefore, it would be a Welsh Government role, or the NHS executive had just been created a number of months before, so an NHS executive role in holding us all—because obviously there are some Public Health Wales actions in there as well—to account for its delivery. I don't think we ever wrote that down, if that's what you're after.

Well, the reason I ask is because although the plan was developed at the request of the Minister, the Welsh Government doesn't consider it a Government plan, and obviously there's some contradiction there. So, I'm just trying to get to the bottom of the role of Government in the plan, I suppose, and how it's ended up in a position where the Welsh Government doesn't consider it their plan.

In my mind, any plan for the NHS, ultimately, if it's signed off, in any country, it's the department of health of that country that you'd expect to be held in the system accountable for delivery. It was an assumption on our part. I do understand—. Obviously, I've been out of it for about 18, 20 months or so. But I think the Welsh Government did issue a refresh—not a refresh, sorry, apologies—a progress report on the implementation of the cancer improvement plan. And I know the elements within the plan are still the very relevant elements that we talk about at the moment, that are the drivers for improving outcomes.

And also, my understanding is the content of the plan and the—. As you are familiar with the plan, quite helpfully, it focused on what health boards needed to do, what all of the players needed to do, and those form part of the conversations that Welsh Government have with health boards around delivery. So, I don't see that they're not owning it, because I think they are behaving in a way that they are, but it's not something that we had an agreed process on. I think we just did the plan and moved into it, assuming it's part of, if you like, the plan for the quality statement, and so that becomes within the auspices of the accountability arrangements for cancer.

Thank you. At the time of publication, were there any discussions around how delivery would be monitored?

All I can recall is part of the normal conversations at the time. As a cancer network board, we felt very strongly that—and we'd been around for a while, obviously—the network board was not accountable for performance managing NHS services. Its role was around providing advice, developing clinical guidelines, sharing knowledge, convening, looking at innovation, working with partners, et cetera. And so, we didn't see that the cancer network would move into a performance management of the NHS. There were obviously actions in there also for the network. It felt more that we were a conduit in developing the plan on behalf of the NHS and on behalf of Welsh Government.

On a number of occasions, when I was chair of the network board, we had a large engagement with third sector, with Government, and we really focused on the big-ticket items. We looked at performance at every board meeting, but there was already in train a performance group that the Welsh Government had around the delivery of cancer services. That's not where we strayed. So, we didn't envisage the network similarly becoming a performance management network for the implementation of the plan. 

One final one on the cancer improvement plan: what lessons do you think there are for Welsh Government and for the wider NHS and other organisations from the way that the cancer improvement plan was produced?

I personally think that the team produced it very quickly and in a very engaged way, including with Government, with partners, et cetera. So, I think maybe clarifying what the onward journey is going to be around the delivery of it at its outset may have been helpful. I think, probably, we were all making assumptions. That said, a lot of people are implementing it, and that's probably the most important thing.

I also think there's always a challenge, when asked to do a plan, of how far forward you want it, because I can remember the conversations at the time were, 'Is this a three year, is it a five year, is it a 10 year?' Obviously, we have 'A Healthier Wales'. Obviously, there's an election coming up next year, and what the strategy for the health system and cancer looks like is going to be really important, I think, in that. So, I think, on understanding of how far out this plan is and how strategic it needed to be, we did have those conversations, because I think we wanted it to be more strategic, but I also understand the focus on, 'We just need to get on and do this.' So, I think a couple of those lessons: agreeing the implementation, the accountability, if there is the potential for assumptions, and being really clear on how far out it is. But it should always be ambitious. There's no point in just trying to level up. To me, this has to always be continuing to improve. So, I think those will probably be some lessons, if that helps.

Thank you. Moving on, then—

Tom, I'll just ask a supplementary, if I may. If I heard correctly, you both stated that Public Health Wales was accountable to the NHS executive, and earlier that the NHS executive is now part of Public Health Wales—if I heard correctly. Correct me if I am wrong. So, who shall guard the guardians? 

Okay. That's a whole different conversation. We are a host body for the NHS executive, NHS performance and improvement, so we are literally there for pay and rations. We do not have any role, nor should we, around its mandate, its priorities, how effective or not it is managing, delivering its mandate. We want to know that they are compliant, that they are following schemes of delegation, that they can provide assurance, so they link into our audit and corporate governance committee, our quality and safety improvement committee. We have an annual assurance statement from them. We work really closely, and have done for the last couple of years, in helping them establish themselves as an entity in their own right, whilst being hosted by us.

So, our focus is around assurance and compliance. We are hands-off in what it does. It looks to Welsh Government in what it does, and it really is an entity that is run, like we all are really, by Government, as it should be. So, our hosting is, if you like, more of a mechanism for it to exist without having to establish a whole special health authority. We have no responsibility about what it does, or the quality of what it does, other than being part of the wider system that connects with it. Was that clear?

Okay. Yes, thanks for clarifying. Tom, back to you.

Thank you. That is a nice bridge question into what I was going to ask about next, which is about national leadership and responsibilities for cancer services in Wales. The auditor general's report stated that it was not clear who was responsible and accountable for driving system-wide improvement to cancer services. What are your reflections on that statement from the auditor general's report? Do you agree with it? 

As I said earlier, I agree with the report. I think, at a high level, it is clear. If you looked at the sentences on the purpose of the players, Welsh Government sets the priorities, sets the expectations, holds the system to account, and NHS organisations are responsible for delivering the priorities of Government. I think where it has got confusing is that middle bit. It is the bit between Government and organisations. Who is doing what? How do they interact? So, I think it has taken a couple of years for the NHS executive, NHS performance and improvement, to refine and optimise how it organises itself to be as effective as it can be and the system needs it to be. I think what has happened over the last couple of years is this multiplicity of fora, of national groups, governing fora, and I'm sure all very well intended, but actually not so much a purposeful design of clarity of respective roles and responsibilities and how they each interact with each other. I think it is that middle where the confusion has been.

As I said earlier, I think we’re all hoping with the national cancer leadership board and all of the activities coming under that one umbrella, then I hope the assets, the skills—and there are a lot of excellent people in NHS performance and improvement; there are superb clinical and non-clinical leaders in there—I think, organised in the right direction, with simple steps and minimal bureaucracy and a really strong connection with the NHS, it could really make a difference. So, I think that would be my reading of it.

Okay, thank you for that. I wonder whether you think that the NHS executive, now—let me get this right—NHS Wales Performance and Improvement, is effectively supporting improvement in cancer services? 

There's a huge amount happening in relation to activity. I was aware that you had colleagues from the Welsh Government and the network in recently and NHS Wales Performance and Improvement; we're all struggling with that new name, aren't we? I think Iain Hardcastle at the time was explaining what they've done recently is move quite a lot of different teams that have interactions and roles around cancer, which obviously, to an extent, I guess is understandable for the first year or so. When you're lifting and shifting pre-existing groups, entities into one, it takes a bit of time to say, 'Okay, how are we then going to streamline everybody so that we are utilising those skills in the best possible way?'

Up until, I would say, probably the last number of months—six to 10 months maybe—including the network, there were a number of other activities within NHS Wales Performance and Improvement who were interacting perhaps with the same people in the NHS with a slightly different focus. Now my understanding is those have come together in a way that you can then exploit those assets, have a purposeful rhythm interaction that are all pointing in the direction of a common goal.

I think it has certainly changed and I feel positive that it will get better. As I say, in the network, they've got amazing people. They have got really superb people. I think probably in the last year, 18 months or so, they perhaps felt that they could have done more, but now with some more organisation, they will be able to really lean back in again because they were instrumental for many years.

I guess the final point is that Improvement Cymru I mentioned earlier is an amazing resource for Wales. They are taught through world-leading improvement methodologies, and similarly, they are part of that mix of supporting the NHS in cancer services. So, I think there's a lot of support—there always has been—but it's disimproved in the way it's been organised, I think, in the last 18 months, but now I see the green shoots and hope that that will be far more purposeful with cleaning out—. I think the auditor general's report has really helped be a stimuli for cleaning out some of the busyness that, perhaps, was unnecessary.

Thank you. My final question. You've sort of already answered this, but if any other witnesses want to come in, you're more than welcome, or if there's anything else you want to add, you're more than welcome. Do you think the national leadership arrangements have become clearer since the auditor general's report, and in particular, whether the creation of a national cancer leadership board is a positive development?

I think the answer is 'yes'. I think that what's going to be key is seeing how that works over the coming months. I have a phrase that is 'having all the cookies in the cookie jar'. All the cookies are in the cookie jar in NHS Wales Performance and Improvement. The skills are there, and I think having it organised now to bring those complementary skills and teams together in a designed interaction can really pick the pace up. So yes, I think that has helped. I don't know if anybody else wants to add.

Okay. Back to you then, Chair.

Thank you. Over to Adam Price, please.

Thank you. Do you want me to start? Then, Ilona, I'm sure you'll have a view. I think it's an important question that's going to become increasingly important, given that we absolutely have to shift to prevention at some pace. Similar to the conversation that we've been having so far, obviously the Welsh Government's role around setting strategy and plans and priorities is really key.

The Cabinet Secretary did a statement around prevention, which obviously included a lung cancer screening programme, and I would say the conversations, from a political and an official discussion, firstly, around prevention, are far more prolific than they have been, so I think that's really positive. As the committee may be aware, the Welsh Government have recently set up the preventing ill health group, which the chief medical officer, who I'm not sure if you've met yet, is chairing, and will bring an energy to that. We have quite strong hope that that will really accelerate a focus around prevention. So, in the same way as everything else, obviously the Welsh Government's focus in setting priorities is key.

Prevention isn't just about health, though, as we know, so if we're really going to tackle prevention, it's about all of the wider determinants. The NHS is often after the fact, and if we can shift that whole focus, which is kind of going into hospitals, into that whole focus about creating healthy communities, we'd be having a different conversation about the NHS. So, Government's role in the implementation of the Well-being of Future Generations (Wales) Act 2015 in ensuring that there is health in all policies and all policies in health is absolutely fundamental. We work with education, with economy, with trade, with climate, because it is all about creating that healthy environment. I see Government's role, similarly, about having that cross-Government focus for a healthy society, which is about a preventative-focused society. 

Just to expand on our role, obviously we have a number of statutory functions. At the heart of our role is prevention, because of creating a healthy society. We've talked about our screening role, but we also do a huge amount that I'm sure Ilona will want to talk about around health improvement, working with schools, working with the NHS, working with local authorities, third sector, in a purposeful focus around the evidence-based interventions that will have the biggest return on investment and biggest outcome. We published a report a couple of months ago called 'Investing in a Healthier Wales: prioritising prevention', which was a life-course approach to the prevention interventions, children and early years, adults and healthy ageing, but those that will yield the biggest return on investment. 

Our role is also about providing advice to Government, to partners, about, 'This is where the biggest bang for buck is that will have the biggest impact on outcomes for the population'. Obviously, we survey the population, we monitor the conditions right across Wales, and we also do a lot of support, convening, resources, guidance, tools. We've talked about health equity previously as well. We see ourselves as providing solutions to help people implement those interventions. We also provide a lot of support to Government, did a lot of work with them around food regulations, the legislative drivers for public health, for prevention. We can't legislate for everything, but there are some really key drivers. So, we have, I would say, an expansive role across all sectors, but it's about prioritising the things that will make the biggest difference.

In the NHS, we, the team, Louisa and colleagues, reviewed the burden of disease in Wales. We saw projections going up like this for type 2 diabetes. So, we've picked type 2 diabetes as a Trojan horse with the NHS to tackle preventing it, because if we can do that, we're also contributing to preventing the 40 per cent of avoidable cancers, because it's the same healthy behaviours.

And then, as far as health boards are concerned, the committee will be familiar, there are executive directors of public health in every health board, which isn't the case in every country. So, that's good, and they have a specialist local public health team that support them. That used to be part of us that we transferred a couple of years ago. But they have a statutory responsibility around the population health of their communities. I think the challenge is, when it's the busyness about waiting lists, waiting times, the focus is very much around the here and now, and it's quite difficult to elbow in prevention in that context.

Finally, before Ilona will want to chip in, to me, local authorities really are the public health bodies. The factors in life that make the most significant difference to healthier lives going forward are often in the auspices of local authorities. So, the relationship with them, be it data, be it schools, be it planning regs, be it healthy workplaces, healthy built environments, is really fundamental as well. So, it's not just the NHS, this applies broadly. But, Ilona, did you just want to add to that?

Thank you so much. One of the elements is that we do live in shifting sands. Where we started 40 years ago is not where we are now, and the risk factors and our exposure to those risk factors has changed over time. Our food environment has changed; we get in a car, we don't move as much. So, the things that allow us to do the things that allow us to stay healthy have also shifted. So, it's not just about telling somebody to do something differently, it's about making it so that it is possible and normal for that to happen. And that's a very fundamental component of how we prevent a lot of conditions.

With that, we have over 20 preventative programmes. We focus on risk factors within health improvements. So, we have work in tobacco control, within Help Me Quit; we have work in hospitals. There's a lot of work targeting those particular groups who are at risk. And of course that then links into the screening programmes. There's work around things like vaping, because we don't know what's going to happen in that space.

We know that tobacco is one of the greatest risk factors. In Public Health Wales we have that national programme, but we have the local links. So, what we do is we work basically with local teams who are delivering elements on the ground, but we also deliver elements nationally as well, and we try to provide a glue between those.

In terms of areas such as healthy weight and obesity prevention, we have programmes through the life course, prevention in childhood, schools, places where we live, work, play. That's where we try and make those shifts so that we are enabling the healthiest behaviours, because we can't just tell people to do something different if the environment doesn't allow that to happen.

And within that then it's about the legislation and the different infrastructure. We have a whole-system approach for healthy weight across Wales. We have teams in each health board, so that's a national and local approach dealing with shifts in the environment and shifts in things that can make a difference, and we work very closely with local teams, and that all links into the Welsh Government strategy, so that fluidity across does exist.

Similarly, with alcohol, we've been doing work on needs assessments, again, another risk factor. We do have work in terms of pathways, in terms of health pathways, so not only the environment, shifting the healthcare system to earlier prevention. We have a recently published piece of work on prevention-based health and care. So, again, putting the right things into the system so that those things come in earlier.

In essence, we do have a lot of groups and systems in place, and that infrastructure is evolving, as we learn, as the system evolves, as our connections to who can make a difference evolve. And the thing we are learning is it's not just about the NHS making the difference, it's about all of the organisations across Wales, our local bodies, everything taking on that mantle of making everything healthier. We are trying to work across the system to make that happen, with the Welsh Government, through our whole-system and other approaches, and on a local level with the teams, with the work that they can do on the ground.

Currently local authorities have the statutory duty around public protection, so they have already a public health statutory duty. I think the challenge is a lot of their functions—. It depends on how you define public health, doesn't it? A lot of their functions, I would say, are already part of public health, particularly the protection of the public. I think, in order to develop the scale of improvement in population outcomes, personally, dispersing specialist local public health skills across lots of organisations may not be the best focus when you’re looking at it on a regional footprint. Ourselves and health boards work really closely with local authorities. To me, it’s really more about having some joint outcomes together. So, we’ve got the public services boards, we’ve got the regional partnership boards. The public services boards, if there was some grit that flows through joint accountability—and some of them are really there, and some of them are not so much there—where you’ve got some outcomes that we know, in delivering them, you’re shifting to prevention, and that are common for local authorities, for education—so, the First 1000 Days programme, for example, adverse childhood experiences, some of the healthy weight stuff—. So, I think it would benefit every sector, a statutory duty in public health. The magic is what you do together within and between organisations. And we’ve had a lot of discussions with colleagues around this. Legislating for it doesn’t make it so, but if there’s an accountability about shared outcomes within and between organisations—. It doesn’t even necessarily mean finance flow. My role as a local authority in achieving the First 1000 Days of life, I’ve got certain measures to do that; as a health board, I’ve got certain measures; and education. The first 1,000 days of life is the most significant time, as we know, in a human being’s life course, that predicts income optimisation, healthy older life. So, I think there are levers that we are not utilising as much. I’m not sure—. The model in England is very variable. I don’t think there has been any evaluation that says it is consistently more effective than any other model. It’s so variable in different local authorities. So, I think it’s about strength in mass, I think.

If I say one sentence and then I'll hand over to Ilona. Absolutely, very loudly, 'yes'. So, a healthcare system only contributes about 15 per cent to 20 per cent to population health outcomes. It is after the fact. Unless it’s an emergency, or an elective procedure, or an unavoidable cancer, or a familial genetic condition, a lot of everything else is after the fact, because we haven’t focused sufficiently on the social determinants to prevent that ill-health episode or experience in life. And a lot of the work we’ve been doing with the World Health Organization articulates that really, really clearly. And at some point, if it’s helpful to get a WHO colleague to come and do a session, we’d be very happy to.

But, Ilona, I’m sure you’d want to—.

The places where we live, where we work, where we play—all of those places shape how we behave. And, actually, that sustainable change, and that embedded change, it takes time. It's not easy. When we look at shifting that, it's hard. And all of these things are very complex. They're not very straightforward. You can't just fix one thing, because you do something in one part of the system and something else reacts, but actually moving that forward in a concerted way—. I think it is, as Tracey has said, about those shared objectives, where all organisations work together to get us to where we need to be. And it is about that sustained and long-term commitment to that kind of change, because none of it happens quickly, and, when we see the outcomes, some of that will be a long time away. We do have a new early years framework, which has just come out. All of these things can provide us with that sense of direction, but it's getting the traction to move quite large parts of the system so that they are all aligned, so that we are, in essence, all working together to actually make that preventative shift.

Diolch yn fawr. Diolch.

Thank you. You referred earlier to the importance of primary care data in the context of prevention, and again, in this session, in response to Adam Price, the key role that prevention must play and grow its role in playing in the future. And you mentioned local authorities. You mentioned health boards. Early in our evidence taking for this inquiry, we had a session with third sector providers, who play a key role in the delivery of prevention and intervention services, but also recovery and rehabilitation services, which, hopefully, prevent the likelihood of reoccurrence also, yet they expressed concern that there was insufficient engagement and co-delivery with them, that things used to be better; they're not now. To what extent do you acknowledge the concern they expressed, and, if you do, how do you believe this can be addressed?

I can't comment on what's happened during the last 18 months, but, previously, in the network, our third sector colleagues in the alliance were very much entwined as part of the team. I'm not as familiar as to what's happened on the cancer service delivery engagement, but perhaps we can give you a little bit of an example on how, for our services, we engage with the third sector, because they're pretty key for us, not only around prevention, engagement, but also around screening. Sharon, did you want to—?

Yes. So, yes, you're absolutely right. The third sector are completely key to us. In terms of the cancer screening programmes that we have up and running, around our programme boards we have the third sector sitting on our programme boards, and actually that's really, really key in terms of the ongoing governance of the programmes. But, actually, when we're working to communicate around the programmes, that third sector engagement is absolutely key. We have a screening engagement team. They have set up engagement with the third sector, and that's where we get the information from, really, to both—. We share the information sources that we're going to send out, so that they can have an input on it, but it's how we gather some of that data. When I was talking before about not having ethnicity data in terms of primary care, it doesn't mean that we're not doing stuff around that. We're still working with our third sector colleagues in terms of that, working with different communities out there in Wales and making sure that we're adapting that message. And community champions is the approach that we do in terms of that trusted voice in that community going forward. And I suppose the lung cancer screening, again, is a really good example of how we've worked with the third sector. The third sector were absolutely key in the pilot that was undertaken in Cwm Taf, and they've been absolutely key in terms of developing that plan, so they're on the project board, and I know they're so invested and so key with us around that pathway to get that programme developed. Yes, they're absolutely key.

If you haven't already, will you perhaps engage with them in relation to the concerns they highlighted to us in their evidence?

Yes, absolutely. Yes.

Thank you very much indeed. And finally, you'll be pleased to hear, are there any comments that you haven't had an opportunity to make that you would like to conclude with?

I guess the only—. We've been talking about it, but I will say it. The only thing is that the only way we're going to improve the immediate, but more the medium- and long-term, incidence of cancer is prevention—for those avoidable cancers. I can't emphasise enough the business that we need to get into as a country, and I mean business outcomes being healthy, fiscally and economically stable societies, because, if we don't have the health of the nation, we will not have a fiscally and economically stable society. Prevention has to have a normal place in the development of policy, in the establishment of priorities, in the way that we organise services. So, I just think that it's just a fundamental requirement now, rather than an add-on, because it's the only way that we're really going to shift into a stable society but actually maintain a health and care system. I don't know if colleagues wanted to say anything slightly less radical. [Laughter.]

Nothing else to add? No.

Just to add that we will be publishing some projections around cancer next month, I think it is. That doesn't include lung cancer yet. 

Great.

It is about being early, earlier, everything earlier. I think it is about earlier prevention, earlier identification. Time matters, and it's about how we make that shift. And actually, we're on shifting sands, so we're going to continuously have to keep moving with how things change as well. 

And hopefully—. From what you said earlier, it's also about the timeliness and the effectiveness of the treatment journey when people do receive a diagnosis. 

And I think creating a mechanism by which we can track prevention. I think there's probably an auditor general function there as well, but, certainly, until it becomes common place, tracking interventions, tracking funding—and it's not just about additional money, it's about how we currently use the money—I think being able to do that gives data and intelligence for us to be able to make adjustments where it's not working. 

Okay. Well that does bring our questions to an end. As you might expect, a transcript of today's proceedings will be shared with you to check for accuracy. Otherwise, all I want to say is, again, thank you for being with us and may the rest of your day go well. 

I propose, Members, in accordance with Standing Order 17.42(ix) that the committee resolves to meet in private for the remainder of today's meeting. Are Members content? I see that Members are content. I would therefore be grateful if we could go into private session.