Public Accounts and Public Administration Committee

We have a couple of papers to note before we move on to our evidence session. Firstly, a letter received from Hefin David MS as the Commissioner for budget and governance for the Senedd Commission regarding the approach being taken to managing the Senedd reform ring-fenced budget in-year and providing an update on the management of said budget. The letter explains that any staff underspend occurring within the ring-fenced budget will be held as contingency towards the delivery of the two Senedd reform work projects and handed back to the consolidated fund at the end of the year if unused. Do Members wish to comment on this letter or are you just content to note? I think that you're content to note it.

So, we'll move rapidly on to our second paper on the Auditor General for Wales's review of cancer services in Wales—the Welsh Government's response. In this, the Welsh Government accepts eight of the 10 recommendations made by the auditor general. In relation to the remaining two recommendations, the Welsh Government set out some areas of action in response to recommendation 4, but without specifying whether it had been accepted. Recommendation 9 was accepted in principle but with certain caveats. Today's session, as you'll be aware, will focus on our inquiry into cancer services in Wales following the auditor general's report, and therefore we will have the opportunity to explore that response during today's session, but also more pertinently with the Welsh Government when we have them before us for this inquiry. But for now, do Members have any comments on that letter or, again, are you content to note? Rhianon.

Just on recommendation 10, I'm not sure where that leaves us now with NHS England being in that recommendation.

Right. Perhaps—

I was just bringing that up for note.

Well, we can capture that, perhaps, when we—. Is it something you'd like to write to Welsh Government now about, or just wait until we have them as witnesses?

It would just need to be amended. I think it needs to be, obviously, considered. So, I'm content either way, but it's a bit daft leaving it in there.

We could just add 'or successor body'.

Yes, exactly. It's a simple amendment.

Right. Any other comments? Adam.

You've made reference to the fact that there is no response in terms of whether they accept recommendation 4 or not. There is some text, then, about what they're going to do, but is there any further clarity that the auditor general can cast upon this, or should we write to the Government asking, 'What is the status of your response? Do you accept it in principle or reject it?', because it's not clear, of course, at present?

Well, I'll ask the auditor general: would you like to comment?

Thanks. My working assumption is that they've accepted it and it's just an oversight, but I don't know, Dave, if you've had any further conversations to clarify.

No further conversations. We'd agree that it's an 'accept', given that they've set out actions, they've named a responsible person and put a timescale to it. But it's something that we can probably clarify when they give evidence.

So, it's a typo, then, more than that they haven't—

I think so.

Okay, fine.

Okay, perhaps we'll just clarify that when they're in front of us, then. And the 'accept in principle', you might recall that this committee, and its predecessor committee, have previously raised concerns about the use of the term 'accept in part'. All I've noted since is that they've replaced the word 'part' with 'principle', but the issues remain outstanding, and I think our predecessor committee had recommended that the Welsh Government stop using that term and that it should be 'accept' or 'reject' with an explanation, rather than 'in part', which hasn't got a good track record of actually producing any further actions. Mike.

I agree—I think it should either be 'accept' or 'reject'. What 'accept in part' or 'accept in principle' means is: we don't like it, we don't agree with it, but we don't want to have an argument over it.

Eloquently put.

Sorry, Chair, I don't disagree with that, but accepting something in part or in principle—they are different things. So, I mean, yes—.

But they don't identify the part that's accepted.

Yes, there might be half of it they like, but the principle, they dislike, so they're not mutually exclusive, are they?

Yes, if they say 'accept in part', 'We accept parts 1 and 2, we don't accept parts 3, 4, and 5', they're just accepting parts and they don't identify which bits they've accepted.

Yes, it just needs to be clear.

Yes. Other than that, you're content to note the letter. Thank you.

We're actually a little bit ahead of time, but can we take a nine-minute break and reconvene at 9.30 a.m., at which time our witnesses will be ready for the evidence session? Thank you.

Bore da a chroeso. Good morning and welcome to our witnesses who have joined us as we reopen the session of this morning’s meeting of the Public Accounts and Public Administration Committee. We’re taking evidence for our inquiry into cancer services in Wales, with representatives from the Wales Cancer Alliance. Could I begin by asking you, please, just for the record, to state your names and roles, in whichever order you choose?

I don't mind going first. Simon Scheeres, and I'm the public affairs manager for Cancer Research in Wales. And I'm one of the vice-chairs of the alliance.

Hannah Buckingham, I'm senior external affairs adviser for Macmillan Cancer Support, and I'm the other vice-chair of the alliance.

Hi, everyone. I'm Lowri Griffiths, and I'm the director of support, policy and insight at Tenovus Cancer Care, and I'm the chair of the Wales Cancer Alliance.

Good morning, everyone. I'm Lauren Marks, I'm policy and public affairs manager at Young Lives vs Cancer, and I'm co-chair of the Wales Cancer Alliance's sub-group on children and young people with cancer.

Diolch yn fawr. Thanks, everybody. As you’d expect, we have many questions. I’ll ask, therefore, both Members and yourselves to be as succinct as possible in your answers, to enable us to get through as many of those as possible. And as convention has it, I, as Chair, will begin the questions before handing over to colleagues. So, beginning with a very general question, what, for each of you, are your overall reflections on the issues identified in the auditor general's report and the urgency of the situation for cancer services in Wales? I don't know which order you want to go in. The chair first.

Yes, I'm happy to start. I think the overall response is that, actually, we're quite sad and disappointed, obviously, to hear the findings. We're organisations that represent patients and we feel that patients aren't well served by the findings. We've long held the view that some of the governance arrangements around cancer services, especially since the development of the quality statement, have not been fit or purpose, and I think that it's a validation, actually, of some of our concerns that the auditor and his colleagues actually came to the same conclusions that we've been talking about for the last five years or so. So, our overall response is: disappointing, but hopefully it's a marker in the sand to do things differently and to reform and to move forward so that we can all collectively work together, and we include ourselves as a sector in that community as well, so that we can actually do better for people affected by cancer in Wales.

Thank you. Would anybody else like to comment?

Yes, I don't mind going next. I think one thing that the report captures really well is the sense of confusion that we see across our cancer services. So, at the moment, we have quite a lot of work streams and initiatives for cancer. So, we've got the cancer improvement plan for Wales, the quality statement on cancer, we've got the cancer recovery programme and various ministerial initiatives, and it can be quite difficult to see how these piece together and deliver for patients. So, the linchpin of the report for me, one of the key recommendations, was around the need for a long-term strategic approach for cancer. And one of the ways that we believe that that should be manifested is through a long-term cancer strategy in Wales. I think that this would provide a lot of opportunity to consolidate those various work streams and put them into a cohesive document, and it would also provide the opportunity to clarify roles and responsibilities in relation to cancer services in Wales.

Thank you. Anyone else? Yes, please.

Yes, we very much do welcome and support the findings of the Audit Wales report, in particular where they do make specific reference to children and young people with cancer, and that's in two main areas in terms of, as Simon said, establishing the sustainable, long-term, strategic approach, which currently, especially when you look at the cancer improvement plan, does lack detail for the specific needs of children and young people, and also in the area of data and information provision in terms of services and access for children and young people. And I think that the report just highlights these two really fundamental areas, which we believe also underpin a lot of other issues that have been quite systemic and overlooked for some time as well. So, combined with the lack of clarity as already mentioned, we welcome that it does make those specific references to children and young people and highlights those issues that we have been trying to flag for many years.

Thank you, and thank you also for the supplementary briefing paper that you sent me for this session, which has been now circulated to Members. Are you as an individual charity content for that to be submitted as a formal piece of evidence for our inquiry?

Yes, we are.

Thank you. In that case, can I invite Rhianon Passmore to take up the questioning?

Thank you very much. Welcome to the committee, everyone. In terms of what's already been said, you've mentioned governance, which is of interest in terms of where you might go with this. What is your perspective on the national cancer performance and the status around the 62 days? Could you give us a little bit of an overview in terms of that?

Yes. I'll start with that one, if that's okay. I think that the performance against that 62-day target and the cancer waiting times is really the sharp end of some of the broader issues that we see in the cancer system in Wales. It's a clear indicator that the current system can't keep up with the demand that we're seeing coming into the system, and it isn't working for far too many people across Wales. The impact on receiving a cancer diagnosis is devastating, but then to have to deal with the long delays in receiving that diagnosis compound it. Delays to starting treatment can be really, really devastating for people living with cancer and their families—having not just a huge impact on their physical health but their mental and emotional health as well. In 2024, we saw, for example, 9,000 people across Wales wait too long to start treatment on that 62-day pathway, which is just not good enough, quite frankly.

As an example—I'm sure colleagues across the table will also speak to examples—we hear from patients every week about the impact of those long delays on their lives. One example we had quite recently was someone talking about the stress of having to chase constantly for test results, chase for appointments, when they're having to navigate that system with that fresh cancer diagnosis. For them particularly, the financial impacts of receiving a cancer diagnosis were also acute in terms of their ability to continue to work. So, then, having to continually push to receive that treatment in a timely fashion was really devastating. And another example that’s always stayed with me was when someone said that they felt that they were quite a strong person and they’d got their head around the diagnosis of cancer, but the impact of delays, of not meeting that target, I think her phrase was, 'I just can’t deal with this.' It’s really, really difficult. She was calling the oncology department daily to find out when her treatment could start.

And I think it’s also worth reflecting as well that, from the perspective of the really dedicated cancer professionals that we have across Wales, it’s also incredibly distressing for them not to be able to deliver timely care for the patients that they support, and when they know that they’re supporting their patients at such a difficult time in their lives but the system isn’t allowing them to do their job as well as they want to.

Yes. I think we'll be talking a little bit later in this session around what can be done differently. In terms of the comparators, for instance, if you get your diagnosis in one part of Wales geographically or if you are living in an area of social deprivation et cetera, those intersectional variables, whether it's a protective characteristic—. How does that impact—I don't know if somebody could speak to that—in terms of what that means then in terms of your place in the system and your outcomes?

In terms of outcomes, we know that, in Wales, death rates are 50 per cent higher in our most deprived groups compared to the least. You're absolutely right—the impact of deprivation is profound in Wales.

And do you know from your research, just to dig a bit deeper into that, or have you any reasoning around that as to why? Is it about an ability to communicate, to access care, transport to care—what is your thought process around that?

So, it's quite multifaceted, but, when we look upstream, we know that a lot of those cases are caused by lung cancer, and two out of three lung cancer cases are, obviously, caused by smoking and smoking prevalence is higher in that group, so there's a higher cancer incidence rate. But beyond that, we know that there are barriers to care, such as medical literacy and the ability to access primary care—so, taking time off work and, obviously, the uptake of screening as well. So, there are quite a lot of different fronts on which we can approach deprivation.

I think there's a challenge as well around that kind of postcode lottery in terms of being able to access different treatments and diagnostics as well. And I think, anecdotally—again, we're not part of the system as such, even though we are, to all intents and purposes—we hear that regional working is not as robust as it could be. So, potentially, you've got challenges between health boards—we see a difference in waiting times for different cancer sites between health boards as well. So, in terms of inequality, it's not just people's characteristics that create those inequalities, it's actually the structures that we have as well that create those inequalities in terms of access to treatment. And that's probably, as far as this committee is concerned, the way that we have set up our NHS in Wales to be very individual organisations, so to try and get organisations to work collectively is a real challenge, even though we do see some movement towards that.

In relation to children and young people, whilst it's great that the 62-day target is reported on, we do think that that potentially obscures the issues for children and young people, as, routinely, when children and young people get their diagnosis, they are into the system and receive their treatment very rapidly; they don't commonly experience a delay in post-diagnosis wait to begin treatment. And, actually, the delays that children and young people experience is the delay between thinking that something is wrong and getting their diagnosis. We see that from patient feedback and also just our general experience of the system. Also, trends across the UK show that children and young people attend their GP surgeries more times than adults do before they get their diagnosis, and children and young people are also most likely to present in an emergency setting before their diagnosis as well. So, with a 62-day target that's looking from point of suspicion to point of start of treatment, we're not getting that information on how long it's taking to get diagnosed and where the problems in the referral are in the system.

So, in terms of that systemically, and in particular around children and young people, you believe that that can be changed systemically in terms of how we count and how that system operates?

Yes.

And in terms of—I don't want to keep going too long—systemically, in terms of regional collaborations, what you're saying is that, outside of diagnostics, there is a need to be able to systemically share on a much more outcome-based system?

Absolutely. Can I make point as well around the single cancer pathway? I think we need to celebrate the pathway to a certain extent—there are, obviously, some exceptions to that—because at the time, Vaughan Gething, who was health Minister, took a brave decision to actually create the single cancer pathway and worked with the Wales Cancer Network to put in place arrangements that actually removed all the hidden waits. So, things that were hidden in the past were very, very exposed. So, what we have is a raw analysis of what the situation is, and it's not perfect, but we know the baseline and there's no hidden waits within that. So, if we get this right, based on this system, the opportunity for transformation is massive, but we're just not getting it right and we're not seeing the movement.

And what does getting it right look like, very briefly, in terms of outcomes?

Well, in terms of outcome, it's hitting those targets, isn't it? But as well as hitting the targets that have been set by the Minister—80 per cent by 2026, and we're way, way off that—it's about the quality of care. So, it's not just about numbers; it's about ensuring that people get the quality of care along those pathways. So, if people are going straight to tests, they actually get support—that they don't just go from their home to a test and then they're told they've got cancer; it's what's needed to be put in place for that. So, it's about the numbers, yes, and achieving that percentage. However, it's about the person-centred approach as well, to make sure that those people are supported along that pathway. But we've got a system that, if it works, would be, I think, the envy of many places.

So, in terms of potential, it's there.

Yes.

And in terms of joining up the dots, briefly, what needs to happen?

We're here to talk about governance and the findings of the Audit Wales report, and I think, fundamentally—and I know that Audit Wales are hopefully going to do some more work at a more granular level, at health board level—there are two things: we need to get our governance arrangements right, don't we, and we need to be clear about what our plan is. We need a strategy that takes us not just for the next parliamentary term—

So, a longer term strategy that would encompass everything that we've talked about in terms of that busy landscape and architecture.

I'm going to move on, otherwise the Chair is going to intervene. In terms of outcomes, I don't know whether you can give this committee some insight in terms of the variability—so, for instance, the difference in terms of bowel cancer and then the uptake in terms of cervical and breast screening. What are the barriers in terms of those differences? And then, in terms of how third sector organisations have been involved in the Cwm Taf pilot, the lung cancer health check programme, and the screening programme, has it taken too long to build from that in terms of developing into a national programme? I don't know if you can try and link those two questions together. There are two parts. Happy to repeat—so, it's just basically the variables and the pilot and the scalability up.

I don't mind kicking off on lung cancer. I think you hit the nail on the head, Rhianon, in terms of taking that outcome-based approach. One of the things we can do to improve outcomes in Wales is launching a targeted lung cancer screening programme. For context, lung cancer takes more lives than any other cancer in Wales, and a key driver behind that is late diagnosis. I think if we took a more holistic approach by looking at what we can do to increase survival, we would be quicker to adopt innovations such as lung screening. I think one of the key aspects for us at CRUK and many others within the sector is that it's taken quite a bit of push to get to this point. Tenovus did a fantastic job of funding the pilot working, and there are other elements that just kind of pushed us to the stage. There's been fantastic clinical leadership in Dr Sinan Eccles, but it shouldn't have been left up to the third sector and clinical leads and champions within the network. We should be horizon scanning and saying, 'Look, how can we improve outcomes in Wales?' This was coming along the path, and we should have been adopting it much quicker.

Yes, I think there are two components, as you say. In terms of screening more generally, some of the success that the bowel programme has had is because they've introduced new tests that are much easier to do. So, immediately, you're going to see an uplift, and also they've reduced the screening age down to 50 now, which is a really positive move, and it will actually save lives. So, I think there's learning in terms of the way that they've done that, and, despite COVID, they've actually been able to implement that. Again, I think, credit where credit's due, we've got there. However, I think there are sensitivity issues in terms of moving that as well that could improve and, obviously, drive even more.

In terms of the lung screening programme, again, in terms of governance around that, the challenge—. It's great that Simon highlighted the role that Tenovus played in that; we didn't actually fund it, we convened the pharmaceutical industry to fund it. So, that's what happened there, because Government said that they couldn't, they wouldn't fund it. So, it was meant to be a pilot that Dr Sinan Eccles had championed, there would be 1,000 cohorts within the Cwm Taf Morgannwg area, however, it ended up that Welsh Government said that they weren't willing to fund their part of it. However, industry went ahead and funded 500, and that's the result of the pilot that you see. There was investment through the Wales cancer network in terms of programme management support, and that is ongoing, and now, obviously, that's with Public Health Wales.

It's taken an age, and we're still not at a point—. So, the response in the Audit Wales report talks about the delivery of a lung screening programme, which the UK screening committee recommended in 2022. However, it talks about a decision to deliver. So, Welsh Government is not committing to deliver, it's committed to making a decision on whether or not it will deliver—

And is there a timescale attached to that?

So, Jeremy Miles, to be fair to him, has actually said, 'I want to see a scoping document produced by the end of March.' So, that decision, then, will be a ministerial decision. However, our concern is that that is not a definite commitment to rolling out a lung screening programme. So, we're still in this kind of hiatus where Government was saying, 'In principle, we agree with this. However, now, we're going to make a decision.' So, what is that decision going to be? If we want to transform outcomes across the board, not just for lung, but actually see a shift in terms of where we position ourselves globally, this is one of the single biggest things we can do. If you had Sinan Eccles here today, he would be able to tell you much more eloquently than I.

Okay. You've been very loud and clear on that point, so that's really interesting—

I'll try and be a little bit quieter—

No, no, I mean in articulation.

If I may I add something—

Yes, of course.

—on children and young people as well, I think, if we are looking at outcomes, we do need to look at all patient populations as well, and children and young people's cancers, despite significant advances in survival rates over the past 30 years, over the last 10 years outcomes have remained fairly static. Cancer does remain the biggest killer by disease of children and young people in Wales, but also they get different types of cancers to adults that aren't routinely addressed through big prevention regimes or through screening programmes, and so we need to make sure that we're also looking at what are the unique differences for children and young people in relation to improving their outcomes. A national strategy would go some way to do that, but also targeting where the opportunities are in relation to that pre-diagnosis phase and looking at education and training for healthcare professionals and enabling them to make efficient referrals.

I would also look at those enablers that go around accessing treatment and care; for example, travel to treatment is a really big thing for children and young people, especially in Wales. They travel the longest distances of children and young people in the entire UK to access their treatment and care, and some do often experience some or all of their care outside of Wales as well, taking them even further, which comes at a financial cost, which is, on average across the UK, £250 a month, but, for Wales, it's £280 a month. So, that is resulting in lots of knock-on impacts. Research that Young Lives vs Cancer have undertaken found that one in 10 reported missing or delaying their treatment because of the impact of the cost of travelling to treatment as well. So, we need to be looking at those broader things and also looking at what's unique for children and young people in terms of the specialist services they're accessing, the different types of cancers they're getting and how those cancers can be addressed, because it's not through routine screening and it's not through big prevention like stopping smoking, for instance.

Yes, so, awareness. And in terms of the late diagnosis, I think you've touched upon some of the systemic issues, and obviously in terms of children and young people, in terms of awareness. Is there anything else, very briefly, that you want to highlight in terms of late diagnosis?

Yes, if I could just—. I think we've touched on some of the issues already, and many of the issues around late presentation and late diagnosis are particularly prevalent in some groups, perhaps, because of a lack of awareness or a lack of health-seeking behaviours. There can be cultural inequality drivers behind some of that behaviour and I think it's really important that we're able to have—we'll talk about data a little bit in more detail later on in the session, I'm sure, but—to be able to have that data to identify those groups and the particular challenges that they face that lead to late diagnosis, late presentation, whether that's in emergency settings. And it's really important to be able to have targeted programmes. So, for example, Macmillan has a programme with the farming community network at the moment, where we're particularly targeting rural communities to address some of those rural cancer inequalities in terms of the additional support that agricultural communities, migrant workers, might need to access cancer support services, and raising awareness. So, it's really about having awareness of the different needs of different groups and having the data behind that so that we can target our support.

Okay. Thank you very much.

Can I just ask a supplementary before we move on? In the briefing paper sent by Young Lives vs Cancer, you note, in the context of what you've already told us, that the Welsh Government's cancer improvement plan report states that the plan is age agnostic and that it's unclear how the plan is therefore being monitored and reported on in relation to improving outcomes for children and young people. Is that issue around monitoring and reporting applicable to all demographics, following the comments about data? And what, specifically in the context of children and young people, do we need to see done differently?

Yes. I'll start, if that's okay. Yes, so exactly as you just said, the cancer improvement plan does acknowledge that children and young people do have unique needs, but then it does go on to say that specific actions for this group aren't included and that the plan aims to meet all of their needs, as well as adults'. However, just some examples of the cancer improvement plan and where this isn't gelling for us, in terms of, as I just mentioned, prevention, the areas mentioned aren't broadly applicable to children and young people in the cancer improvement plan; the early diagnosis section broadly focuses on screening programmes for cancers that don't affect children and young people; the faster diagnosis section has a strong focus on rapid diagnostic clinics, which, whilst a welcome intervention, the commissioning and referral criteria are for over 18s, so children and young people aren't accessing rapid diagnostic clinics; and the patient experience section has a focus on addressing the outcomes of the cancer patient experience survey, but, again, there is no cancer patient experience capture for the under-16 population. So, whilst it says that it intends to meet children and young people's needs, systematically, children and young people are being overlooked in the detail. So, we do need a systematic inclusion and recognition of the unique needs of children and young people.

It's therefore not clear how any other recommendations—. We're not seeing reporting on how that specifically relates to children and young people. However, there are objectives in the plan for specific cancer types and there also are actions for specific health boards, so it does beg the question: why did they feel that it wasn't appropriate to do specific actions for children and young people as a population who access a very specialist service? So, I do think that there does need to be a systematic embedding of children and young people throughout and recognition of where things do and don't apply to children and young people so that it's very clear and that they're thought about from the very beginning.

I think, Mark, just to answer your question more broadly, the only target you have that health boards are monitored on in terms of performance is for cancer. I mean, there are diagnostic targets et cetera, but it is that one single cancer pathway target, which is baked into integrated medium-term plans. So, the broader stuff that is recommended in the Audit Wales report isn't systematically reported on, so you get a very qualitative kind of analysis, I suppose, in terms of that target that we talked about earlier, but you don't really get much detail around the component elements within the pathway. So, maybe that's something. Even though the data's there, some of it's not validated, so it can't be published, and there is some challenge around that, I suppose, which you could pick up in the data section if you're going to ask a question around that.

Perhaps I should declare that two of my children, when they were younger, received diagnoses. For the first one, there wasn't the referral to yourselves; now, you're in most of the hospitals, both Young Lives vs Cancer, Macmillan and Tenovus are often—. But, when the first one happened, there wasn't. With the second one, it was Young Lives vs Cancer or CLIC Sargent that got my other daughter through her experiences. So, thank you. I thought I'd place that on the record, because there's a slight conflict of interest. But, moving on, could I please invite Mike—Mike Hedges—to take up the questioning?

Diolch, Cadeirydd. What is the witnesses' overall view on the cancer improvement plan?

I can kick off, if that’s okay. I think it’s really important to set out the context in which it was launched. Lowri was, obviously, on the scene before I was, but I think it’s—. We had the quality statement for cancer, so, obviously, it's the Welsh Government’s vision for what good cancer services look like. And at the time, it was felt that it didn't have the scope or scale or the implementation structure to be classed as a cancer strategy. The CIP was launched, which did a great job of collating current actions from health boards and putting it into one document, but some of the challenges that we’ve seen with it is that it didn’t come with dedicated funding or the levers to set new policies and draw funding to implement them. I think another issue is that it’s really—. There’s a lot of scope to improve. I think one of the benchmarks of a good cancer strategy is that long-term vision, and the cancer improvement plan only spans three years. So, there’s a lot of scope to just improve our national approach in terms of the cancer strategy.

I think, just picking up, one of the other key weaknesses around the plan, really—the cancer improvement plan—was the governance of the plan. There weren’t really any robust mechanisms to enforce, track or evaluate whether the actions contained within the plan were being delivered at all—very little transparency about that. And it wasn’t, actually, until the Wales Cancer Alliance, last year, pushed for a red, amber, green rating of the actions that were contained within the plan that that process then started to happen. And we’re now starting to see—I think it’s twice yearly now—a RAG rating brought together of all the actions that are contained within the plan. But, until we pushed for that last year, it wasn’t clear that that was even happening. So, the governance of the plan has been a real weakness. And I think, as we’ve said, the plan only lasts until next year, so we’re unclear about what’s coming next. And I think there needs to be a really robust evaluation process of the approach that we have in place to inform whatever decision is made about what comes next. And obviously, we would like there to be a really strong long-term cancer strategy for Wales to deliver the improvements that we need to see. But there needs to be a really robust examination process of what hasn’t worked with the current approach as well.

To echo that, really, I think that this gets to the crux of some of the challenges that have been identified within the Audit Wales report. You had a system whereby we were on a journey through our delivery plans. CRUK probably would have wanted them to be more far reaching, and they were four-year plans, but we were iterating each time. So, a single cancer pathway, rapid diagnostic centres, they all came from those delivery plans, and then, all of a sudden, that just came to a halt, and, all of a sudden, we have a quality statement, which is a high-level policy intention for cancer, which may as well have just said, ‘We want really good cancer services’, which we all do, but it didn’t actually give the detail of how we were going to deliver that. So, we did, we pushed the Minister, to be fair, for some kind of action plan to sit underneath that and that’s the cancer improvement plan. The challenge, then, is that the Government didn’t recognise it, because it sat outwith of the arrangements, which were quality statements. So, it was wholly owned by the NHS and it didn’t have its place, because health boards themselves didn’t recognise it. So, you had this plan floating around, but what it did was house everything that needed to be done. Going back to the point that, if you deliver on what you say you’re going to deliver, we’re going to have good services, and it was all in there—it’s all in there; we just need to deliver it.

I think now we’ve seen a bit of a rush to try and bring it back into play, and that’s caused even more confusion, because you’ve got different initiatives et cetera. And currently, the quality statement is being updated in response to this, to clarify arrangements. And one of our concerns is that’s not being done in a collaborative and open way. So, we have very little idea, other than a meeting that we had very, very briefly yesterday with Welsh Government to explain to us, but not show us, some of the changes that have been made. So, I think this is the crux of it: what is happening, who’s leading what and how are we going to move forward? And that’s why I said I think this is a watershed moment to actually get all our ducks lined up in a way now that is going to take forward cancer services in a coherent way.

I would agree with everything that colleagues have said, and I'd just reiterate that the current cancer improvement plan is not long term enough in nature to make that ambitious long-term progress. Obviously, I've gone through a lot of detail about why I don't think it meets the needs of children and young people, but also in terms of long-term well-being of cancer patients as well, I think we need to look at cancer as a disease that impacts your entire life; it's multifaceted and it doesn't just stop when your treatment stops either. We do need to go further in relation to long-term outcomes and long-term well-being, and how we make sure that cancer patients, both children and young people, who are at a very key developmental stage in life, but also all cancer patients, get the best possible outcomes so that they get the best chance of life, and also don't become a long-term burden to our health system as well. So, if you get it right now, when they have cancer, you prevent those long-term issues and later effects into later life as well.

If I could just briefly pick up on that, I completely agree with Lauren. Just to build on that a little bit, it's important to recognise that the cancer improvement plan isn't a cross-governmental approach to supporting people living with cancer and delivering the holistic support system that they need, whereas we know that the reality of living with a cancer diagnosis is not just confined to your health; it's about much more. It does impact your whole life, and it feels like the approach of the cancer improvement plan doesn't really reflect that reality for people living with cancer today. As demand increases, as we know it's going to, we really need that long-term and cross-governmental approach to ensure that our systems are supporting people living with cancer.

In your opinion, and I'm only asking for your opinion, which health board performs best and where in the world do you think we can learn from?

I don't think you can say that one health board performs better than another, because you've got different cancer site groups, so different tumour sites. So, say, if someone goes off sick in one health board, and you've got a small number of cancers, that service is impacted massively, whereas if you've got a big service like a colorectal service, it doesn't matter if one person goes off sick, because you've got so many clinicians. So, I think it just fluxes, and I wouldn't want to sit here and say who does something well, although I will pick out Cardiff and Vale, who have done an awful lot to change their approach in terms of the single cancer pathway, but, and they'll admit this themselves, we need to make sure that we're focusing on the patient experience as well. So, I can't say that there's anybody who does it better than others. There are certainly some who have tumour sites that are worse than others, in terms of the waiting times, but I don't think it's for us to sit here and call out league tables.

I wasn't asking for a league table. I think one of the things that I find in Wales that we're very poor at is, somebody does something well, but no-one else is prepared to learn from them, and I think that the auditor general is going to nod at that. Good practice is not, 'Oh, they're doing very well.' It's not, 'How are they doing very well and how can we learn from them?', it's, 'Oh, well done them, let's carry on as we're doing now.' That was the point I was trying to get across, obviously unsuccessfully. [Laughter.]

Sorry, Mike.

How important is it that the third sector actually knows what's going on and can actually provide help and advice?

In terms of the advice we offer, I think it's really important to look at the membership of the Wales Cancer Alliance. We've got incredible reach into different parts of the pathway, different age groups and different parts of care, so, prevention, early diagnosis and palliative. I think one of the really key things to drive home here is just to say that our services and input are only meaningful if we have that back-and-forth dialogue in Wales. Can I just hark back to your point about international examples, if that's okay?

Yes, please.

I think when we look at countries that are doing well, in terms of their strategic approach to cancer, Denmark really sticks out. I think evidence from the International Cancer Benchmarking Partnership has found that countries with successive long-term cancer plans, backed by political will and sufficient investment, have seen greater improvements in cancer outcomes over time, and that's the key for us here. I think that's the rationale behind our call for a long-term strategy in Wales, because while our outcomes have improved in recent decades, we still lag behind comparable jurisdictions internationally.

Can I just interject there, if I may? Are there any good practice examples, maybe not as good as Denmark, elsewhere in the UK, in any part of the UK, which we could be looking to?

I think the different health systems have different challenges. In terms of looking at a good model for what’s included in a cancer strategy, the Scottish Government do quite well in mapping out what needs to be done in providing that long-term vision.

Can I just—? Sorry, also on Scotland, Scotland do have a separate cancer strategy for children and young people, and they are the only nation in the UK that does. Northern Ireland, however, do draw out children and young people within their strategy, and England have committed to having children and young people as a distinct section within their upcoming national cancer plan, and they have re-established the children and young people’s cancer taskforce to help deliver that as well. So, there’s precedent from across the UK that children and young people are distinctly recognised within a cancer strategy.

Can I just answer Mike’s question around the involvement of third sector, is that okay? I think one of the words that Audit Wales chose in the report is actually a very delicate word, which was ‘underappreciated’, and I think that’s absolutely bang on, because we do feel underappreciated.

The alliance has been in being now for 20 years. We were established in 2006, and throughout that time we’ve been involved, consulted, engaged. Going back to prudent healthcare, one of the key pillars of that was co-production. Value in Health talks about working with the sector as key partners. And I would say, if it wasn’t for certain individuals within the NHS Wales Executive, we would have no engagement whatsoever; we’d have been thrown out of the arrangements.

We do have meetings with the Minister, and again it was Vaughan Gething who introduced those with the alliance when he was deputy health Minister responsible for the delivery plans. So, we’re grateful for the continuation of that particular audience with the Minister.

My colleague Matthew, actually, who’s sat in the audience, facilitated a written question that came back from Welsh Government recently, that said that we had those audiences to help develop policy. We don’t have those meetings to help develop policy; we have those meetings to provide assurances to us as a sector as to what’s going on. So, I’d say we don’t have any opportunity really, other than what’s being facilitated, as I said, by key individuals, to sit on the cancer reference group, but we’re still not clear about how that group influences the wider governance structure. So, it’s still in flux, and we’re told that could change. So, we don’t know.

There’s nothing that’s hard-baked into the system at the moment that enables us as a sector to engage in the way that we used to with the delivery plan, when you had one network, clear workstreams, and then the opportunity for the sector to kind of get involved and bring the voices of patients to bear on that particular set-up. So, it’s still unclear. It’s getting better, and we’re having conversations, but, like I said, that’s individually based, as opposed to the system providing those opportunities for the sector.

And I would just add, also in relation to children and young people as well, I’d agree we need more meaningful involvement of the third sector, and also a recognition of the role that the third sector plays in terms of delivering many roles and functions within the children and young people’s cancer core services, including funding, for example, physical infrastructure, but also nursing roles, multi-disciplinary team co-ordinator roles, and social workers and youth support co-ordinators. The third sector funds and delivers a lot of the fundamental parts of the services that children and young people experience, but often I think it can come across that we’re seen as lobbyists, but actually we are proactive partners, we are patient support organisations, service providers, and also experts in what we do.

Sometimes, it does feel like potentially information, research and data that the third sector presents is maybe not taken as seriously as data from elsewhere. So, we do need to be recognised as partners in delivery, so we should also be partners in the strategy as well, and also importantly realise the role that we also play in relation to amplifying the voice of patients. We work with these patients who access all these cancer services every day, so we do know what they’re saying, and we do research into those things as well. So, in terms of amplifying the patient voice, as well as directly talking to patients and family, which absolutely should be the case, the third sector also has a role to play there as well.

Thank you. The oversight, and I quote the auditor general, is

‘narrowly focussed on the 62-day target’.

I have a view on targets that, setting those sorts of targets, you’ve got little control over. Setting the target as a number of patients to be treated, you have control over. You can actually say, ‘We’re going to treat 100 colorectal in SBU next month.’ You’ve got control over that, and if you’re failing to do it, you can be held to account. If you can say, 'We're keeping it at 62 days', you're actually affected by the number of people coming in, you're affected by referrals, et cetera, so you actually can't do anything about that. What happens on day 63? Most people who have a cancer diagnosis want to be seen the next day; they don't want to wait 62 days.

This isn't for you; this is just me thinking out loud: wouldn't it be more useful—but you might want to comment—if we actually had a line of the length of time people are taking, so that it says, 'These were served in the first seven, 14, 21, 28, 35, 42, 49, 56 and then 62 days', and it ends by 70? So, if you're missing it by one day, it's not quite the same as missing it by two months, is it? I don't know if you agree with anything I've just said, or don't want to comment, but that's just me, either having a stream of consciousness, or thinking aloud.

I think you make a really valid point, because we've heard immediately that, for certain cancers, you can wait 62 days before you start treatment and it's not going to have a massive impact; for other cancers, waiting 62 days to start treatment is potentially the difference between life and death. But we have to have a system that works, potentially, for everybody.

So, the national optimal pathways, which the national clinical network has developed, are supposed to address some of that, and there are those component waits within that 62 target, which are reported on, but not publicly. So, that information is available. We know the longer waits, they're there, but they're not reported on. They're not the official target that we wait for every month to gauge how the system is doing, which is why we've just got this one metric, which is what's included in IMTP. I think that was one of the comments from Audit Wales: we need this more nuanced view of who's waiting and for what bit, so we can improve the system. So, I think your train of thought is absolutely right, Mike, to be fair to you.

Thank you. People don't often say that to me. [Laughter.]

Yes, they do.

Yes, they do. I contradict you, Mike.

The other thing I was going to say is—. A number of you, and I've forgotten who it was, talked about additional money. But there's a shortage of cancer surgeons, isn't there? There's a shortage of doctors working in the field of oncology. So, if you had the money, what would you do with it?

Gosh, that's a good question.

That's a very good question.

I don't think it's for us to answer that, Mike. Not that we want to pass the buck to our clinical colleagues, but I think, when and if they come here to talk to you, they'll be able to tell you where it should be spent. But there are clear examples in here of where we can make a difference: some of the radiology stuff; people being trained in Wales who then can't get jobs within our system because we haven't got budgets to employ them—that just seems bonkers; and a lung cancer screening programme, which would shift the dial. It'll be expensive, but it'll actually save lives and position Wales much more favourably on a global scale. There are some really obvious things that we can do. But, yes, we are very, very short staffed across the board, really—pathology—but then we've got technology coming in as well, hopefully, that will help us with some of those solutions.

I won't bore everybody in the room with my view on how we should be using technology, and I won't bore everybody in the room by the fact that we should be getting better testing. I think those are the two areas. If we are going to improve cancer outcomes, we need to catch cancers earlier and we need to investigate blood tests, et cetera, that will catch cancers earlier, and when we do that, we need to get early treatment in order to stop it developing. And we all know people, the first time they discovered they had cancer they were at stage 4 and they were terminal, including a former Member of this Senedd, whereas if they had been caught at stage 1, there would have been a much better chance of catching it. Shouldn't we all be doing more—and I'll throw this at the doctors when they come in—on trying to get the earliest possible time to find out if somebody's got cancer or not?

Absolutely, that's what it's all about, isn't it, I think, and that's where the lung screening programme would certainly address the biggest killer for cancer. But, yes, we agree with you, Mike. And I don't think there's anybody within the system who's not trying to achieve that, it's just the sheer volume of patients that are coming through the system, and it's the system that we need to change to be able to identify people upstream.

And, of course, there's a group, of which I am still currently a member, of men between 20 and 65, who think they're going to live forever and there can't be anything seriously wrong with them. I'm not sure how we're going to address that. Women are much better at going to the doctor, because a number of them have spent a long time in childbirth, et cetera, so they've been used to visiting the doctor regularly. Men tend to be, generally, very poor at going to the doctor. Should you be doing more to get men to take more of a proactive action in terms of trying to get themselves tested?

I'm happy to take that. When you say 'you', do you mean the third sector?

Yes, you as the third sector.

I certainly think that there are examples of where we're trying to proactively target men. There are also examples of where we want to proactively target clinicians to take women more seriously, because they are likely to present more often, and therefore they're not taken as seriously. So, I think there's nuance in terms of that gender lens that we look through at healthcare approaches. But, certainly, yes, as a sector, we want to try and recruit more people on to the all-Wales cancer community that Tenovus run, and we really struggle with trying to recruit men to that community. So, there is probably more that we could do. Bowel screening has done some specific work to target first-time men into the bowel screening programme, which I think has been successful, so there are initiatives, but maybe there is more to do, Mike.

I think that's a really important point you made earlier, Mike, about workforce, and addressing that point about ensuring that we have the cancer workforce that can deal with some of these challenges and the increases in people that we're seeing coming through the cancer system. In some work Macmillan did a couple of years ago, we estimated that there's going to be a shortage of about 160 clinical nurse specialists by 2030 in Wales in order to keep up with the demand that we're seeing through the system. So, from a strategic point of view, there's absolutely got to be that national strategic approach to ensuring that we have the appropriate workforce in place to deal with the challenges.

Thank you. And although it's not declaring an interest, I've had family who have had a very good service from Macmillan.

Thank you. I would just point out, as I mentioned in the Chamber yesterday, there are certain conditions, like ovarian cancer, where this month there is an annual focus on raising awareness to increase women's take-up of the available screening. So, it's not just men, but, obviously, men are pretty bad at it, I quite agree. I would also point out that, unfortunately, we've lost a number of MSs over the years to cancer, and I can think of a few immediately, so everyone's affected.

One word before I move on to the next questions from Tom Giffard. You mentioned the word 'co-production'. That's hard-wired now, the term, into various pieces of Welsh legislation, strategies and plans, but is it the case that, as I'm experiencing, we've almost gone back to base one with public officials instead conflating that with the term 'consultation', rather than co-production? If so, how do we need to better train and monitor the public officials charged with implementing this legislation and these plans to understand that co-production is about breaking down the barriers between statutory service providers, non-statutory service providers and service users, and then designing, delivering and monitoring the systems then put in place?

I think if there's one thing that we as a sector would want to get out of this session, it is to communicate to this particular group how we feel underappreciated as a sector, because we have been involved right from the beginning—I've certainly been in the public affairs field since devolution, since 1999—and we've never known it like this, where we've not been involved or talked to. There is a suspicion, I think, about the third sector. We are service providers, we do, obviously, fund research and do amazing stuff, but we are here today talking very openly and very candidly about some of the what we believe to be failings within the system. I think that there's a barrier that comes up in that regard, as opposed to having the maturity to be able to say, 'Actually, let's not get defensive about this, let's understand and try and bring you in.'

We've made offers of being willing to leave meetings at certain points where performance is discussed, we understand that. However, there does seem to be a real hesitancy and nervousness around the sector, which I think is a real shame, because we are mature in the way that we deliver our activity. And that's not going to stop us speaking candidly, because we're here to represent the people that we serve, who are patients who come to us to look for us to do that on their behalf. So, yes, it's refreshing to hear you say that, Mark, because I think it's really important. And it is touched upon in the Audit Wales report, but to amplify that would be really important for us as a sector.

I would agree with the points Lowri has made. Sometimes, co-production isn't always possible or feasible, and we also understand that. But when it is consultation, the third sector are there to contribute and add their views, evidence, insight, experiences et cetera, and so routinely embedding the third sector as part of any consultation mechanism feels like a very easily achievable thing that could be done.

For example, last year, the children's cancer service specification was released for consultation, but children and young people's cancer charities in the third sector weren't informed that it was out for consultation at all. We heard about it third hand the day before the consultation deadline. My charity did end up putting a consultation response in, but then when the specifications were published, we weren't informed that they had been published.

We also haven't been informed why certain things that we had fed back haven't been included in the specifications, and we are a core part of providing parts of the service, as well as some of our other colleagues in the third sector. So, it just feels like routinely embedding the third sector as a partner in that is easily achievable, and that's just one example where that hasn't been the case.

Co-production, of course, means that working with your sector and service users should occur before the draft plan and before the consultation, not in the consultation alone. Lowri, you were going to say something.

I was just going to say I want to give one positive example, on the cancer improvement plan, for all its ups and downs. In our meeting and audience with the health Minister, we were very robust in saying, ‘We haven’t been consulted on this’, and she said, ‘Okay, I will pause the publication of this to give you the opportunity to get involved’. And she did, to be fair to her, and we moved at pace to put focus groups and a survey in place. We managed to get 150 voices to inform one chapter, the ‘meeting people’s needs’ chapter, and we were able to refine and improve and really bring that to life in terms of what we’d heard from that engagement. So, that’s just one example that, had it been baked in, we could have done the whole thing and it would have been much more robust. But, hats off to Eluned Morgan, she enabled that to happen, and we were able to move quickly and swiftly to bring voices in to inform that plan.

And one quick final rhetorical question from me—'yes' or 'no' would do. Is it not the case that, contrary to the pushback often that it would cost too much, actually getting this right is going to save money further down the road?

Absolutely, yes. We’re free. We’re free, Mark. [Laughter.] The cost is time, isn’t it?

Thank you. Tom Giffard.

Thank you, Chair. I wanted to raise a few issues around national leadership roles and responsibilities. Can you start by telling us whether new developments around the network clinical leadership group and national cancer leadership board will improve national leadership? And how well has the Welsh Government engaged the third sector in developing those arrangements?

That’s a big one, isn’t it? I think just the language that you’ve used, and if there’s a member of the public listening in today they’re going to be like, ‘Flipping heck, what does all of that mean?’ I think that’s kind of where we’re at. We’re policy people, we’ve been doing this a long time, and it’s really difficult to grasp what is going on at the moment. We know that there has been an announcement by the Minister to set up a leadership board that is chaired by the deputy chief medical officer. We don’t know who the deputy CMO is at the moment; I don’t think there is one, even though somebody was covering, but then they weren’t covering. So, there’s confusion there in terms of that leadership. So, the same leadership structure that was within a different committee has now shifted over to this committee, and there is a risk that that is just going to create more of the same. I don’t know how effective it’s going to be; we’ll have to wait and see in terms of what they deliver, because we have no insight into that.

Just harking back to the second point of the question, where I asked how well has the third sector been engaged in these plans, I’d assume, from your answer, not very.

The arrangement that’s been put in place, again, because key individuals fought to keep us within arrangements, is that we, through the chair of the alliance, whoever that may be, me at the moment, sit on what now has been established as the cancer reference group, which sits within the national strategic network element. So, you've got the recovery programme element over here, which is part of planned care within the NHS executive, and then you've got the network element over here. So, we've got a seat at the table at a reference group that feeds into the leadership group for cancer, which then heads off into the abyss within the NHS executive.

I think we've had about two meetings of that particular group, but we've been told that that could change, based on whatever this new ministerially appointed leadership group decides will happen. So, we're in this kind of holding pattern of, 'What does that group actually do?' You know, it is very convivial; it's not brilliantly attended at the moment, because I think there is some confusion, but, again, it's great to still have a seat at that table, and that's what we're clinging on to at the moment.

Whatever does happen with the arrangements, there does need to be greater clarity and more streamlining, alignment and, I think, clarity as to whether groups have representatives who are experts or who are accountable for children and young people's services, and how cancer for children and young people is interacting with wider children's health as well. Also, those cross-programme interactions could be better clarified. But, yes, clarification, above the cancer site groups, for which there is a children's one and a teenage and young adult one, which are clinical colleagues and advising the system—above that, what's the accountability for children and young people, where is that going and how is it linked with children's health.

I think it is important to say that we do still have our audience with the health Minister, and I think that's really important to us, because we've gone through an iteration of health Ministers who've turned over, and each time it's, 'Are we still going to be afforded this opportunity?' We are incredibly grateful for that opportunity. It is the only opportunity that cancer charities have to speak to the health Minister, whereas, way back, we could just nip in and nip out. So, we've been corralled into this particular meeting, and that's our audience. We do have, as I say, really proactive individuals within the system who are open and engaged with us, but that's based on their own trust in us as a sector, as opposed to it being part of the system, I suppose, and that's what we don't understand at the moment. So, we do have access to a certain extent through these informal mechanisms, but we don't quite understand where the future lies. Is that fair enough, do you think?

I think so, yes. I think it's that confusion about, particularly with the new changes of arrangements, what our place will be and how we'll be able to ensure that we can continue to feed in our experience and expertise, and the voices of people living with cancer, into the new arrangements.

I'm guessing, then, from the informal arrangements that you talk about, a lot of that is—I don't want to put words in your mouth, but I'm just trying to clarify for my own mind—dependent on having those personal relationships and connections. Obviously, if the personnel changes, either on your end or theirs, or something changes, then it's not necessarily a guarantee that you'll still have that ability to feed through. Is that a fair assessment?

Yes, absolutely. I think we're still waiting to see how everything settles, and I'm sure it will take time. It is getting better. I'm certainly seeing more action in terms of deliverables, and we're being told about that, and that's through, again, an individual within the recovery programme, which has been really helpful, actually, to keep us updated about what's happening.

A similar sort of question, really: I know the cancer alliance wrote to the committee expressing concerns about national leadership arrangements. I just wondered whether there's anything in that sort of vein in that letter that you wanted to draw our particular attention to or expand on.

I think we just don't know who's in charge, really. If you asked me to point out an individual—'That person is in charge'—I couldn't tell you who it was. I could take a stab at it. Who's got the influence? Who's shifting and making those decisions, because it's not, from what we hear—? We're also, or I am, certainly, part of another group called the major conditions alliance, which is where the third sector and royal colleges have come together to try to better understand how the national clinical networks more generally, not just cancer, work. Clinicians are feeling disgruntled as well, because they don’t feel that they have a handle on who’s doing what. I don’t want to speak for them, obviously, but there’s this real, ‘Who’s in charge?’ Do we know? No, I don’t think we know who’s in charge.

I’m guessing that’s made more acute, going back to your previous answer, which is a lot of this depends on personal relationships, and then if you can’t identify that person that problem exacerbates, right? Okay.

Can I also ask how effective national arrangements to engage with the third sector are? Both for third sector organisations to share insights, but also to understand key challenges and opportunities to help them target their own efforts to support national improvement.

I think we've touched on that, Tom, haven't we? Is there anything we wanted to add?

There's probably more to say if we do start to talk about data, because I think there’s the leadership side, but the data side is also a thing that has to go hand in hand with that. So, if we do come on to questions on data, I think we’ll probably expand.

I think you’ve been very comprehensive on leadership. Mike asked previously what are the international examples to look to in terms of service delivery and care. Are there international examples we should be looking to in terms of engagement and how a national leadership framework really works?

That’s a really good question. Harking back to the international benchmarking partnership’s work on what makes a good strategic approach, it’s having that long-term ambitious viewpoint on cancer, strong leadership at each tier of the system, and also dedicated oversight and governance arrangements. By taking that holistic approach, we know we can strengthen our approach to cancer in general.

Just harking back to the other point in terms of that engagement and that co-production, I think it’s really important to set out the context. Cancer is massive, the challenge is big, and no-one should or can be expected to face it alone. So, having those arrangements in place is really crucial. What we find in other nations is, when different sectors work together across political parties, Governments, so on and so forth, we can really take a good stab at improving outcomes.

Thank you very much indeed. I'll hand over to Adam Price, please, who has two sets of questions.

Thank you very much, Chair. There are two subjects that I'd like to cover in the time that I have. If I can start with prevention of cancer, are we able to prevent cancer more than we do at present in Wales?

Absolutely. Four out of 10 cancers in Wales are preventable. We absolutely can do more and move further and faster to mitigate that trend. In the context of cancer incidence rates, our analysis shows that cancer incidence rates are forecast to rise by a tenth by 2040, unless we do something about it. When we look at those risk factors for cancer, we’ve obviously got smoking, which is the leading cause of cancer in Wales. It causes 3,100 cases of cancer every year. When we look at obesity and overweight, that causes 1,000 cancer cases every year as well. These accumulate and put great pressure on our system.

The things we can do to mitigate that toll are things like addressing the obesogenic environment in Wales. Just yesterday, the Welsh Government passed legislation on creating a healthier environment, which we show steadfast support for, because our analysis shows that if the current trend continues, the rates of overweight and obesity will be the same as people living with a healthy weight by 2040. So, we absolutely need to double down on that front.

Some of the things we can do to mitigate those preventable cancers are things like enhancing smoking cessation services in Wales. The Tobacco and Vapes Bill is an incredible opportunity to stop the next generation from smoking, another area that we show a lot of support for. But also, I think one thing that came through the auditor general’s report was that systemic look at prevention. I feel that we're very good at making change on that legislative level, but when it comes to shifting the focus within health boards to be more incorporating of prevention, there's a lot of room for improvement.

At the moment, the Welsh Government expects health boards to relay evidence of prevention in their plans, but they could do a lot more in terms of joining up the dots and just making sure that prevention efforts are more cohesive across Wales. A prime example is the smoking cessation incentive within Betsi Cadwaladr for pregnant smokers. That’s been incredible, but it’s not rolled out in other parts of Wales. It’s gone through a pilot process, but I’m not sure what’s happening. It’s been a long time—

Chair, can I just interrupt on that one? In terms of that as an example of what we've talked about earlier in terms of the Cwm Taf pilot as well, is there a general issue in terms of rolling out best practice pilots—that it's not necessarily—or we don't know—an issue to do with finance, but more around systemic best practice and learning, in a sense, both through governance and clinically?

Most definitely. I think we suffer from a bit of pilotitis in Wales. We love a good pilot, and translating that across the whole of Wales is where I think the barrier is.

Just on that, the interventions are one thing, or the policy, whether that be legislation or different kinds of interventions—so, you have them—but you don't then have that whole-system approach that brings them all together to share good practice, and also set them in some kind of framework. You would expect, as we're discussing prevention now, that there would be a crucial role for Public Health Wales. So, what am I missing here? Why do they not play a role in the system at present—that kind of holistic, coherent role that you've just described?

I think that's a very good question for the Welsh Government. I don't have the answer to it. I think my take-home, basically, after reading the report, is just that there needs to be a systemic shift towards prevention on that health board level, which I think Government could play a stronger role in.

I'll speak in English, just because I think it might be easier for everyone. I think Public Health Wales has got a key role to play in this, and I think you're absolutely right, it would be good to get some kind of cohesion and bringing everything together, and it would be potentially the role of Public Health Wales to do that. It seems the obvious place. They do have the screening programmes within their remit. Bowel cancer screening will prevent cancer, because it will remove polyps, if they're identified early. Cervical cancer screening will identify HPV, and that can be treated. So, they are preventative. And, obviously, breast is early diagnosis, and hopefully lung would be early diagnosis—all preventative as well, if you identify nodules and monitor those. So, there is scope within Public Health Wales, through the screening programmes, in that regard as well, but I think you're right in terms of where does the responsibility sit for prevention.

Just to give a bit of historic context around cancer, in the cancer delivery plans that were established, the first two that we had had a section on prevention. I remember going to this workshop where everyone was scratching their heads a little bit: 'Well, this isn't just us, this is every disease area'—so, cardiovascular, diabetes, all the same preventative measures. It was like, 'Right, well, actually, we're going to park that, because that's not us.' So, it fell out of the remit of cancer governance, I suppose, and I think that is a challenge, because you'll probably have the cardiac network here, and the diabetes network, and they'd probably all say the same thing. I don't think it's for us to answer, but a solution needs to be had, and it is identified in the report. I think there's a recommendation, which they've accepted, that they'll put together an advisory group, which again is a bit of a concern, because advisory groups advise, they don't do.

It would be remiss of me not to make a point here in relation to prevention. I think prevention can be thought about in many different ways, but in terms of the classic prevention in terms of screening, smoking cessation et cetera, that targets cancers that don't commonly affect children and young people. Cancer in children and young people is driven by factors that don't routinely get managed by those prevention mechanisms. So, I think also, in terms of shifting the balance on prevention, we need to not lose sight that prevention in that sense doesn't work for children and young people. They will still get cancer in that age group because of the different factors that drive it and the types of cancers.

However, we do need to take a future prevention approach to children and young people in terms of delivering the best possible outcomes for them when they do get cancer as a child or young person, so they get the best outcomes afterwards, don't have as many long-term late effects, don't become a future health burden to the system, and also improving overall well-being. I think that is a broader sense of prevention and that needs to look more holistically as well. So we need to be thinking about prevention in terms of getting the best outcomes for children and young people when they do get cancer as a future prevention mechanism for later life.

Can I just interject before we continue, if I may? I should declare, as a former rebellious youth myself, but also a parent and grandparent, I know that simply banning things in law can often incentivise the wish to use banned things, or things that you are told at your age you shouldn't be having, because they become cool. But for addicts, and smoking for example, it pushes people to find other sources. When it's alcohol they make their own or they go to the black market. We see a lot of publicity about cigarettes on the black market at the moment. So unless we can target those populations co-productively to persuade them to take the choice themselves, whatever their age demographic, not to do certain things because it's good to do that, simply banning things doesn't necessarily deliver the outcomes we want. So how do we better, through public health messaging, reach the target audiences so that they can take ownership for themselves of a healthier lifestyle?

There's a role for campaigns, I think. In terms of smoking cessation there's education as well. I think you're absolutely right—you need to hit it at both angles in terms of free choice and smoking. It's quite a contentious area. I'd argue that that free choice is taken away from a lot of smokers. There's no liberty in addiction.

You've mentioned alcohol, which I think is really pertinent. We don't have an alcohol strategy in Wales, which I know was highlighted within the Audit Wales report as well. I think, yes, we need to hit prevention at all fronts, and when it comes to that national approach to cancer, our quality statement—which is our vision of what good cancer services should look like—doesn't have any markers on prevention. When you look at the rising cases of cancer and the fact that we can actually prevent four out of 10 cancer cases, it absolutely needs to be written within it.

But I think you're right, Mark—you need to take a multifaceted approach. Education I believe is a big part of that. I think this is why we've shown steadfast support to local initiatives such as ASH Wales Cymru who work with local communities to inform that work with schoolchildren, to inform them of the harms of smoking to prevent them from taking up smoking in the first place.

There was a discussion yesterday in the debate on the regulations around the carrot and stick approach. In this context, of course, we're talking in all seriousness about fruit and vegetables. Is there also a role for subsidising healthy food by the state? Is that part of the approach? When we look across at international examples, who does the prevention work for cancer well, in that whole-system way that you've described?

I don't think anyone would argue against better access to healthier foods. We definitely need to take a holistic approach, so I definitely agree with you on that one. I think in terms of that healthy food environment, legislation can be seen as a stick. But also, when we look at our food environment, it's heavily imbalanced. We know that products high in fat, salt and sugar are disproportionately pushed onto consumers, and that's contributing to rising rates of obesity in Wales.

In terms of who we can look at for best practice, there’s quite a lot to be proud of in the UK already, especially in tobacco control. We’re seen as world leaders with the Tobacco and Vapes Bill. No other country has done it, taken a definitive stance against tobacco, which just devastates communities right across the UK. In terms of other examples, we can look at places like Holland, who seem to have good traction with reducing childhood obesity rates, because it is a concern that those rates are rising, and we need to address them.

Also, in terms of prevention, we’ve mentioned that the context for children and young people is different. Do prevention strategies also have to reflect the fact that there are inequalities within the society we live in? So, we need to tailor these prevention strategies to address the fact that the results at present in terms of incidence, et cetera, are very different, for example, in terms of socioeconomic status—so, we need to target the interventions and messaging in specific communities. Do we do that well enough at present?

Within our tobacco control strategy, there’s a whole chapter that looks at reducing inequalities. I think, yes, those public messages that target those groups are within it. There is scope to do a lot more. Just connecting the dots from primary prevention to secondary prevention, there are actions that we can take to go further and faster, and a prime example of that is targeted lung cancer screening. What’s really interesting about this innovation and why so many organisations wave the flag on it is that it’s got the ability to target ever-smokers or people with a history of smoking, and when we look upstream we know that the prevalence of smoking is three times higher in Wales’s poorest communities. So, this intervention can reduce those health inequalities not only through smoking cessation support services that are wrapped around this screening intervention in line with the UK national screening committee’s recommendation, but it can also drive down and turn the tide on late diagnosis as a consequence of smoking-related lung cancers. So, I’d say there is scope for our national approach to be more agile, basically, when it comes to prevention and capitalising on those opportunities at pace.

Could I just build on that from Simon? I think it’s a really important point that we think, from a strategic perspective, that prevention doesn’t just stop at diagnosis. Lauren’s touched on that as well. It’s embedding that preventative approach across the cancer pathway, because with that holistic support for people—particularly you have those, perhaps, in deprivation, those at greatest risk of developing complications as we see more people living with not just cancer, but multiple conditions living longer—having that preventive approach and that holistic personalised care and support ensures that we see fewer crisis points along the cancer treatment pathway, fewer emergency presentations, and then that reduces the pressure on the wider health system. So, I think it’s important that we think of prevention throughout the cancer pathway and it doesn’t just stop at cancer diagnosis.

So, it becomes more of a prevention and early intervention strategy—in that you prevent more negative consequences if you intervene at every point earlier in the process. Okay.

I think the prehabilitation agenda is massive in this space as well. It’s kind of emerging, and some health boards are grasping it and some aren’t. For cancer in particular, people are waiting—we’ve heard, as Mike was saying—some people are waiting beyond that 62-day target. So, they’re waiting for their treatment to start, they know they’ve got cancer, but they’re not starting treatment for maybe six weeks, which is terrifying in itself, but what can we do to optimise those patients as they start their treatment? And they will have better outcomes—better surgical outcomes—better responses to their chemotherapy et cetera, if we do exactly as you described, which is that intervention at that place. Even two weeks of exercise, eating more healthily or checking your iron, whatever, is going to have an impact on the outcomes—obviously, a better outcome for the patient, but also a better outcome in terms of cost savings for the NHS as well. So, it's an agenda, I think, that is teetering on being introduced, but not systematically been introduced for the benefit of the system, as well as patients.

And taking that intervention into psychosocial needs, in the broadest sense, in terms of how cancer impacts, for example, your financial health. If your financial health suffers, then other things suffer—you make sacrifices, you don't pay your heating bills, you cut back on food, et cetera, you don't travel to the hospital, which is very much the case in children and young people's cancers. That's one of the sacrifices that we hear people making—they don't travel to hospital because of the cost of getting there. So, enabling people, through financial support, to get to the hospital will also have that impact, and making sure they're financially healthy as well throughout their cancer treatment will enable that as well.

I just wanted to ask, as there are some places that provide home test kits in terms of HPV, whether we do that in Wales at present. That's proved to be successful.

I'd look to Simon to answer that one.

That's an area of prevention that I'm not clued up on, but I can write back to the committee to update you on that front. But, talking about the cost of these risk factors to the NHS, which are preventable—Lowri's point about cost saving—for context, our analysis shows that smoking costs the UK's health systems upwards of £2 billion a year, which is massive. So, anything we can do to pull back that tide and plough that money back into services would be welcomed.

I just want to turn to—

We're running very short of time, but Rhianon Passmore—. Adam, can I just bring Rhianon in for a second?

Sorry, just very briefly, in terms of an overview of what's been said, we've mentioned the piloting in Cwm Taf and the importance of rolling out lung cancer screening on a pan-Wales framework. With the pilot, obviously, in terms of the way it's been spoken of and assessed, I am presuming the diagnosis was increased. What analysis was there in terms of clinical workforce pressures?

I think that's being looked at in the round now. So, the scoping project that Public Health Wales are actually carrying out is looking at all those indications, because, you're right, it is going to have an extra demand on the workforce. We'll need the mobile support to get the scanners out into communities. It's a huge endeavour, but that analysis is being done, and that's the report that the Minister has asked to be accelerated, so that he can make that decision, which is what we talked about before.

Okay. And very, very briefly, in terms of the elongation in terms of smear testing, have there been any impacts assessed from that at this point?

I'm not an expert on cervical screening, so I'm not going to be able to answer that, I'm afraid.

Fine. That's me done.

Just to turn to data, I've read that there are some places in the world, some states in Canada, for example, where data is more or less available in real time, and it tracks across that cancer journey, so that people can see even the information about specific individuals and whether they've been screened et cetera. Could you tell us what kind of data we don't publish at present, and what is not shared with you, as third sector bodies, that we should collect and share?

I think, Adam, we do gather a lot of data.

We collect an awful lot of data, but what we don't do is publish that data in the same way that we do the 62-day target data. So, I think the data is there, but the argument is that it's management data as opposed to fully validated performance data to publish as part of the NHS data suite. So, the data is there, but it's not published. If he were here, Matthew from Breast Cancer Now—. They've got a real passion about exposing the 28-day target for diagnostics as well. So, that data is gathered and it's used to inform the system, but it's not published, so it's not readily available for us as a sector or you as the Senedd or your research teams to scrutinise. I think that's one of the challenges and one of the things that we've been asking for. In particular in Macmillan, you were really interested in those really long waits, weren't you? So, we could probably get them, but they're not validated, so we can't hold to account on them.

I think there's also the issue around demographic data as well. We've talked a lot about the inequalities that exist within the cancer system, whether that's waiting times or more broadly, but we don't have that detailed demographic data for the cancer system in Wales, so it's very difficult then, if we don't have that data, to be able to make the appropriate interventions, support those communities that are waiting longer, and find out why they're waiting longer or they're not getting the support and receiving timely treatment. That data just isn't in the system when it really should be.

Also, I would add that there are a lot of data sources and data completion can be patchy as well. So, complete data sets, I think, also can be an issue, and then delays in publishing those. So, in terms of when data is published, it may not be the most recent data, because there's been a lag in terms of publishing that data as well, and then again, as Lowri said, in terms of availability to the third sector. But I think, in particular for children and young people, whilst we do recognise the issue of it being a relatively small cohort, we don't want that cohort to get any bigger so we get better data. That's not something that we want to advocate for. So, we need to find better ways of getting data on children and young people in a very usable way. For example, they're either not included in data sets or they're obscured within wider age ranges. For example, in the cancer survival data, you get 15 to 44, or 15 to 54, or even 15 to 99, and that's not helpful for children and young people who have a very distinct experience who are going to different services. For the cancer waiting time 62-day target, all under-30s is the lowest age denomination you can have, which is not drawing out children and young people.

And also, in relation to the cancer patient experience survey, it isn't published or delivered as frequently as it is elsewhere in the UK. It's also for over-16s as well. We don't have patient experience capture for under-16s like we do elsewhere in the UK as well. For children and young people, there is a particular issue in availability and visibility for that age group, and, ultimately, it limits our understanding of their unique experiences in relation to older adults. They're going to different services, they're getting different types of cancers, so we really do need to see the data for this group, firstly to inform service development, but also to help us as a third sector understand the landscape, adapt our services and help with targeted interventions for that group as well.

Can I just make a point on data? I think two things that we hear anecdotally, again—because we're not within the system; we sit outside of it, obviously—and one is around the challenges in terms of processing data through the registry because of capacity. I think that's one challenge, so we lag behind a little bit in terms of what we can report on mortality and survivorship, which makes it difficult for us then to take part in the international cancer benchmarking partnership and international comparisons, because we're slightly on the back foot in terms of capacity to be able to deliver the most up-to-date information.

And then the other thing is around the transformation programme that is happening around the replacement for CaNISC, which I'm sure, Mark, you've heard about over and over for many, many years. We know that CaNISC, which is the IT solution for capturing data around people's treatment of cancer, has been kind of dying slowly and needed to be replaced. So, a business case was made to the Welsh Government to develop a new solution for cancer, and that's being really slowly implemented, and probably not fast enough, and now we need to go back and make another—I say ‘we’; the royal ‘we’—business case to take forward so that we can have that complete solution. It has just taken such a long time, and yet it is crucial for us to be able to have up-to-date registry information, up-to-date information on our systems so that we can take part in what we now have, the 10 cancer audits, so that we can benchmark ourselves and compare ourselves to England and beyond through the various different international comparison studies. So, data is hugely important. I think that there's a training need—this is, again, what we hear—at health boards, because if you have individuals inputting data in a slightly different way, it's going to skew what comes out the other end. So, the call for data improvement within the Audit Wales report is really, really welcome, I think, and hopefully we'll get a new approach.

If I could also just very quickly add, the note in the Audit Wales report about information from Welsh patients who are treated in England is also really key as well, because for children and young people, for many of them their care is delivered outside Wales for either some or, in some cases, all. Very much from the north of Wales, they are treated in the specialist principal treatment centres in England, and so we do need to be able to see the data on what's happening for Welsh patients in England, and also then be able to compare to Welsh patients who stay in Wales for the majority of their care.

We've run out of time, Chair, but I'm interested in knowing and perhaps you can write us on this. In looking forward to the potential of predictive analytics, for example, we have in Wales the SAIL Databank. We as a country have the highest percentage of medical records available for research purposes, and there is huge potential there. Is there anything that you're aware of in terms of data sharing that could make the most of that potential?

I think that SAIL is something exceptional that we have here in Wales, but we as a sector can't access that data. So, for us—

—it's difficult for us to say because we cannot access that data. We could make a request and pay for it, to do the research, but we don't have access to that data, which is a big bugbear of ours. We've got a group that we've set up as a third sector data group for cancer, and one of the things that they're trying to do is work with various different partners in Digital Health and Care Wales, et cetera, but we can't access that data.

That just strikes me as foolish. The third sector should have access to the SAIL Databank, so there we are, that's something for the committee to try and resolve.

Thank you very much.

Diolch. Thank you. We've come to the grand finale. The final question and the catch-all question: is there anything that you would like to add regarding the auditor general's report, the Welsh Government response, or what would you like to see happen next in terms of cancer services in Wales?

Chair, I wanted a final question.

Sorry, Rhianon did ask for a supplementary. I'm sorry.

Sorry. Very, very briefly, it's a really important topic that we've just touched upon there and I'm sure it'll come back to committee and across the health sector in terms of the use of AI, et cetera. In terms of prevention and linking these two segments together, we do have data and we do need the data that you've talked about, so I'm not diluting that at all, but we've got the Wales indices of multiple deprivation, we've got the census data in terms of those vulnerabilities, we've got the lower super-output data, we've got the old Objective 1 European structural funding zones that are still there in terms of poverty deprivation, so, to a certain extent, we can target in terms of what we already know. So, whether it's Welsh Government, whether it's the third sector or whether it's health boards, is there anything cohesive that is looking at what we do know in terms of deprivation, and areas of deprivation, in terms of targeting, whether it's diagnostics or screening? I don't know if that's anything that anybody wants to speak to.

I've no idea, Rhianon, to be honest with you. We're trying to push on some of that. What tends to happen is that this is magic that happens in the background, where you pull bits of data to try and aggregate with that bit of data to be able to produce the reports to support. So, the data is there, but it's not very coherent or it's patchy. But I don't know and I think, again, that's one of the recommendations, isn't it?

Okay, thank you. That's me.

Okay, thank you, and perhaps that's something we could pick up when we speak to the Welsh Government. So, back to my question: anything you'd like to add regarding how we go forward?

I can start. As I said at the top of the session, we very much welcome the report from the auditor general and I think it has really highlighted some of the foundational issues that I think have then resulted in further systemic issues in the system. If I may just give one further example in relation to children and young people, in terms of the lack of a national strategy, a better strategic approach being needed and accountability not being clear, we feel like that has resulted in, for example, disparity.

So, the paediatric service is commissioned by the NHS Wales Joint Commissioning Committee, but the teenage and young adult service is not commissioned. It's delivered thanks to all of our wonderful clinical colleagues and there's lots of third sector funding also involved. Also, national standards for teenage and young adults were published in 2010—it's the closest we've got to a service specification—and have not been updated since. So, they're out of date and there are lots of gaps then forming in the system in relation to this, especially the transitional age, between paediatrics and TYA. Also, we're now out of sync with English specifications, which is really fundamental, because children and young people's care is delivered on a UK-wide specialist network as well.

So, I think the lack of that clear strategic direction and the accountability has therefore caused some of these systemic issues underneath the surface, and I think the report has been great at highlighting those. I think we do need to go and get the basics right as well, in response to this report, and really have a long, hard look at some of those things. I know the JCC is looking into whether to commission TYA services, but we don't have an answer on that yet. Ultimately, we just need a rapid review of children and young people's services and a realignment of standards and specifications, and then linked to the accountability and the strategic direction—it all fits together in a jigsaw, in a way. So, yes, I thought I would make that point in relation to children and young people, but very much welcome and agree with the points that were made by Audit Wales in relation to children and young people in the report.

Thanks, Lauren. I just want to welcome the report, really. It was really like a gleeful moment for us when we heard that Audit Wales was going to carry out this review, because we've been talking about some of the challenges that we've been experiencing, and it felt as if the grown-ups had come in to try and sort everything out. So, my comment would be: this is a watershed moment. I really feel it's a really important moment for us, to take stock, and not be defensive—. I say 'we'; we're defensive as well, sometimes, and we're guilty of it too. We mustn't be defensive, we must try and move forward coherently.

There's a recommendation here about providing that coherent model for system leadership, with a deadline of next Monday, 31 March. We're told by Welsh Government, in accepting the recommendation, that there will be clear clarity on what's going to happen. We still don't know what's happening, and they've got three days to include us. It says that,

'The NHS Executive will provide the clinical, third sector, and private sector input to its work.'

We've not been asked by the NHS to provide input into how that's being developed. So, already, the recommendations made by Audit Wales, which have been accepted by Welsh Government, and there's a deadline by next Monday, have failed to deliver. So, this is the point that we're trying to make, really: it's words, but it's not action. And, as a sector, we do feel underappreciated, I suppose. That's my point.

Just to support everything that Lowri and Lauren have said. I think it's really important—we talked earlier about the difficulties with the governance of the current cancer implementation plan—that, again, Audit Wales, it was brilliant to see that highlighted. Again, I think we're already seeing some of those issues play out with the delivery of the recommendations and the implementation of those. So, I think it's going to be really important for us to, again, keep the pressure up, to ensure that these recommendations—they've been accepted by the Welsh Government—so we need to keep the pressure up, to ensure that they're delivered, and, as Lauren said, make sure that we're getting the basics right. This is a really important opportunity for us to improve cancer services in Wales, so I really hope we do see that.

I guess the linchpin for the report for me is just that long-term strategic approach to cancer in Wales. I think that provides ample opportunity to launch some sort of document or initiative to bring everything that we've discussed together: so, clearly marking roles and responsibilities; addressing some of the workforce issues that you suggested; making sure that Wales harnesses the latest innovations, like targeted lung cancer screening; making sure that we're making the best use of data that we have available to us; and, finally, is our approach to cancer meeting the needs of all patients, across the cancer pathway, including children and young people in Wales.

Okay. Thank you very much indeed. That brings our questions to an end, you'll be very sad to hear. [Laughter.] So, thanks very much for attending. A copy of today's proceedings will be sent to you, for checking for accuracy. Otherwise, may I wish you a safe journey back, to wherever you're going, and may the rest of your day be fruitful?

So, I propose, 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'd be grateful if we could go into private session.