National Assembly for Wales

Welcome to the Health and Social Care Committee this morning. We have apologies from Sarah for item 3 today, and no substitution in that item. So, that will just be for item 3 today. We're operating a hybrid model today, so some Members and witnesses face to face, and some virtually. And, as always, we have simultaneous translation from Welsh to English. If there are any declarations of interest, please say now. No.

In that case, I move to item 2. Our predecessor committee, in the fifth Senedd—the Health, Social Care and Sport Committee—held an inquiry into endoscopy services, back in April 2019, which seems a long time ago now, doesn't it? It found that increasing demand for endoscopy and a lack of capacity in hospitals was driving long waiting times for endoscopy appointments, and called for the Welsh Government to develop and implement a national endoscopy plan at pace. So, as a committee, we're always very keen to look back at our predecessor committee and follow up where appropriate. So, this committee is now holding a short inquiry into endoscopy services to consider what further actions are to be implemented, and looking at the national endoscopy action plan. So, I'm very delighted we've got witnesses with us this morning, as our very first panel for this short inquiry. I wonder if the witnesses could perhaps just introduce themselves for the public record—if I come to you first, Katie.

Thank you. I'm Katie Till. I'm public affairs manager for Wales at Cancer Research UK.

I'm Gerard McMahon. I'm the head of policy and influencing in the devolved nations for Bowel Cancer UK.

Lovely. And I think that it's your first time to join us in committee, so a warm welcome as well, and thank you for being with us this morning. Perhaps it would be helpful at the start, just from your perspective, to just give us a summary of the position regarding waiting times for endoscopy.

I'm happy to go first there. As you were saying, looking back at what the previous inquiry was looking at—the endoscopy action plan—I think, for us, we welcomed that in 2019, as a way of providing a direction of travel to meet some of the demands of that time. What we're seeing now is that the waiting times are still considerably below where they should be. If you look at, say, the last three months that data is available for, I think that it ranges from 33 per cent to 41 per cent who are beginning their treatment within 62 days—from the point of referral to treatment. So, there's still a considerable gap between where the service should be and where it currently is. And part of that has been driven by a massive increase in demand. Some of the data that's starting to be published within the time that the endoscopy action plan came into force and where we are just now was the introduction of data around overall referrals each month. And you can see, from roughly this time last year—the December, January, February time—there was a referral level of between about 2,300 and 2,600 into the lower gastrointestinal pathway. I think, in the last three months, it's between 2,900 and 3,200. I think that what you're seeing now is that, from about May last year, there's been an increase in demand to over 3,000 each month, and that's a substantial increase. What's driven that? I can't say exactly for certain. It could be the outcome of Bowel Cancer Awareness Month and more awareness raising. It could be the Dame Deborah James effect and the fact that her story was so prevalent in the media for a number of months, and perhaps that's had an impact on waiting times.

And can I ask, Gerard, does that vary across Wales, across health boards?

There is variation across each of the health boards. I suppose, thinking back over a period of time, it's not typically one area that's always at the bottom and one area that's always at the top; there is variation month to month. I think that what that just shows is that there are pinch-points that can occur. That could be because of staffing at any one time, and I think that workforce is one of the key issues that we'll probably talk about today—about that pressure on workforce and how that can manifest itself each month. But we do see that there's a variation. If you look at that figure for November, it's 41 per cent. But you've got a range each month typically from the mid 20s per cent up to about 50 per cent, so there can be quite a bit of disparity. So, there's no area that's doing well, as such, when you compare it to the standard, but there are some that do, perhaps, typically better. 

As a result of the longer waits, what is the impact in terms of cancer outcomes?

There's a danger with longer waits that you see people potentially moving from one stage to another. The stage of diagnosis is really important when it comes to survival. If you look at stage 1 diagnosis, almost everyone—it's 95 per cent or 96 per cent—will survive in five years. If you look at stage 4, it's almost the reverse—it's about 8 per cent or 9 per cent survival. So, the stage of diagnosis is really, really critical. The longer someone waits, the more risks you take with that. But, I think the key thing around that would be the awareness of symptoms, and then the staff and the capacity to deal with that number of referrals that comes through, because we want to see more people aware of symptoms and we want to see them present to their general practitioner, but there then needs to be the service further down the line that has the capacity to deal with that.  

Thank you, Gerard. I suppose, Katie, that you want to add to that, but I suppose it might be helpful, also, to talk to any experience that patients have whilst waiting for endoscopy services, and what support they get or don't get. 

Yes, absolutely. I back up everything that Gerard has mentioned. Not to throw any more stats at you, but the waiting times across the board for cancer are really poor, and it's something that we are continually concerned and worried about. When we're talking about endoscopy, we're obviously not just talking about bowel cancer or lower GI cancers; we're talking about a range of cancers, namely upper GI, but others too. No health board has hit the target of 75 per cent of people being seen within 62 days of suspicion of cancer and starting treatment. That's across the board for all cancers, but if you look at lower GI, and you consider that bowel cancer is the fourth most common cancer in Wales, 41 per cent of people were seen within that 62-day time.

If you think about people, that's not an easy wait for people, as you can imagine; these are people who are experiencing symptoms and who have been referred because there is a suspicion of cancer or because they've gone through screening. That's a hugely anxious wait, and we know that, often, the blocker within that time is the diagnostics period. So, again not to throw more stats at you, but I think that this is a useful one, the analysis that has been done at CRUK shows that on diagnostic waiting times, going back to September 2022, over 16,000 people were waiting over eight weeks for the key endoscopy tests in Wales, compared to pre pandemic—so, in September 2019—when that was only 2,888 people. Our waiting lists have increased hugely and it's a really, really big concern.

Just to reiterate, the reason that waiting is such a concern in cancer is because early diagnosis is so crucial and so important. So, endoscopy is a really, really important diagnostic tool. If we're getting blocked there, we are slowing down people's diagnosis and, therefore, we are making, potentially, treatment less effective and more difficult and outcomes less good. It may be technical, but it's a really, really important part of the puzzle.

In terms of waiting times, either Katie or Gerard, how do they compare to the other services across the UK? Are there any comparisons that you're aware of?

Yes, I was looking at comparable data just the other day, because I think, with the way that data is presented across each of the nations, the real comparison would be July to September last year. I think Wales is sitting third out of four. Northern Ireland is around about 25 per cent, then it's up to about 40 per cent, England's in the low 40s as well, and then I think Scotland is about 59 per cent. So, no area of the UK, again, is meeting their targets, but there's just that variation in just how far away from that target we seem to be.

It's really important to acknowledge the challenge the system is under, and we will come to the workforce pressures, but the commitment from NHS staff and the commitment from everybody working on endoscopy and cancer services to focus on early diagnosis and to support patients is clearly there. So, I don't think it's just a Welsh problem, but yes, we have really clear issues. If the ambition is to increase—sorry, not increase the target of waiting times, but, for example, for health boards to be hitting 70 per cent of people to be seen within 62 days by, I think, April 2023 is the Minister's ambition—we're so far from that, and we're in February.

Is the Minister's ambition a reasonable target to achieve?

I think we see, if you look at even England, for example, I think they've had in their long-term plan a target for early-stage diagnosis of about 75 per cent. So, we're seeing these targets popping up, and I think they're useful in setting that target, setting that position down the road that we want to get to. And as Katie says, these are challenges that are not unique to Wales.

I think, just to touch on something earlier about the staging, we're not seeing a massive shift in the stage. So it is sitting still just under 40 per cent of bowel cancers being diagnosed at stage 1, stage 2, so, although the demand's increased, and although we are seeing lengthier waits, the staging is still roughly where it was. Obviously, we want to see that move upwards. But I think, with the increase in demand, a lot of the changes that have come about through the endoscopy action plan, which are really quite substantial improvements, we're maybe not seeing the positive outcome of that because of other factors. 

Okay. I'm just going to bring Jack in for a quick supplementary. Jack.

Thanks, Chair. Gerard, you mentioned that the data is most comparable in July through to September. Does that mean that the nations are using data differently?

I think it's more about the collection points and the publication of it. So, if you look at—

Okay. So, I'm being a bit more cynical than what it actually is. Okay.

No, that's okay. Just to clarify that, in Wales and in England, you get monthly updates that run two months lag. In Northern Ireland and in Scotland, it's a quarterly update that runs a quarter lag. So, it can take a bit of time to see where all the data lines up across all four nations. 

Okay, thanks. 

Thank you. Rhun ap Iorwerth.

Sorry, I missed the first part of that. It wasn't on the translation. I caught the last part about community diagnostic hubs. 

Sorry, Rhun, do you mind just—?

If you'd like to put your headset on, we can maybe try again.

Shall I go first? Is that okay? Yes, I think that's obviously a really, really important question. Workforce is the single biggest issue, I think, holding back endoscopy services and cancer services more broadly. We know that workforce shortages, again, are not just a Welsh issue. So, it's reported across the UK that workforce issues within endoscopy are probably the biggest challenge. We don't know, however, what it looks like in terms of capacity in numbers and data in Wales, so I don't have—maybe it is collected, and not publicly—but we don't know how many endoscopists we have, where they are, where shortages are, those sorts of basic bits of data are really, really, challenging to have. There is obviously, of course, anecdotally, regional variation. Again, I don't have the data to back up where that is, but that is a really, really important part of the puzzle to understand how to address workforce shortages. We know that it is capacity in the system that is driving these long waits. 

In terms of your question on solutions, yes, I'd definitely come back to community diagnostic hubs. In the long term, it is doing really proper data collection, recording that and sharing that publicly. In thinking about what's making people leave the service, what's affecting staff retention and well-being, and all of that, I know we've just had a workforce plan out from Welsh Government yesterday, I believe, so there will be some really positive things in there, but in the shorter term, I think it's about maximising retention. So, it feels basic but it's things like thinking about flexible working and part-time working—how can the NHS support particularly people who are thinking about retirement, but lots of us are thinking about flexible working, particularly post pandemic. And also, skills mix approaches. So, thinking about how we can use non-medical endoscopists to support endoscopy services, and I know that it's something that Health Education and Improvement Wales are really interested in as well. 

The other part of the picture, as you alluded to, is the innovations piece. So, it's new things, new ways of doing things that will help the burden, I guess, on capacity and demand. So, yes, we absolutely think community diagnostic hubs, which obviously include endoscopy services, are a really fantastic innovation that we think Wales would really benefit from, and I understand that it is going to be part of the cancer improvement plan that, again, was published this week. Whereas the difference between regional diagnostic hubs [Correction: 'rapid diagnostic clinics'] is around endoscopy services being part of that. So, yes, we think that more can come out into the community—that can only be a positive thing. 

There are other innovations such as colon capsule endoscopy, cytosponge, transnasal endoscopy that, again, can be actually less invasive and better for patients in lots of ways, and also, again, remove some of that burden from more traditional, I guess, endoscopy services. 

Unfortunately, I've not had a chance to look at the details of the workforce plan as yet. We'll do that, and if there's anything from that we think, we'd be happy to submit that to the committee afterwards if it helps with your understanding of our position. But I would say that the workforce plan is definitely something that we've been calling for for a while. Through the cancer improvement plan as well, we were saying that we want to see those two things running in tandem, because a lot of the changes that have taken place over the last few years through the endoscopy action plan, as I said earlier, we're not really seeing a lot of the benefits from it because of that increase in demand and the pressures on the workforce, and the capacity in the services. So, essentially, you can create new pathways, you can introduce new approaches to diagnosis, but it's potentially being built on sand if you've not got the workforce there that can hold it up and help to deliver that service.

And I agree with everything that Katie was saying there about the need for retention. I think, going back to the impact of COVID, I think that's put a lot of pressure on health service staff, the work that they did through that period of time and since then, in terms of recovery, has been phenomenal. I think the bowel screening programme is a perfect example of that work. I think retention is huge—bringing more people into the system and also opportunities for retraining and upskilling are really, really important. And with the colon capsule endoscopy, I think that comes into that whole space of access, and with the community diagnostic hubs, if you're looking at bringing health carers as close to people as possible, the quantitative faecal immunochemical test in primary care, the symptomatic FIT test, is another way of bringing a greater level of innovation into the pathway at an earlier stage, to hopefully improve the service and hopefully reduce demand on endoscopy services by being able to more appropriately refer patients.

I'll come in first. I think Wales has a real challenge in moving quickly and taking up innovations in a quick time. And, when we talked through the waiting times, it's clear that thousands of people are waiting longer than eight weeks for those diagnostic tests, and that's a huge issue. I think it's 16,000 people waiting over eight weeks since September 2022 for diagnostic tests. That's a huge number of people waiting for tests in Wales. I think we do have particular challenges in Wales in terms of taking up innovations and thinking about how we really tackle that. Something that we and lots of organisations fed in to the Wales Cancer Network and to Welsh Government, through the development of the cancer improvement plan—and I think that message has landed, and I think that that is acknowledged, and part of the improvement plan is to address some of that.

What we would want to see is something much longer term. So, the improvement plan is a three-year plan to really think about what the future holds for cancer services in general and to really get earlier diagnosis right. We need to be thinking much, much longer term down the line, to think about how we're going to get these new innovations and how we are spotting innovations—what's going to be the big thing in 15 years, and how do we set up the service, so that we're thinking about how we can adopt that quickly? So, yes, we don't have any community diagnostic hubs yet in Wales and I think that's a real shame.

If I could maybe just—. On that, I think within the cancer improvement plan, there is a section on a cancer innovation fund. It'll be interesting to see some more details around that and how that could come in to help speed up some of that introduction of innovation. If you look at colon capsule endoscopy, for example, that's something that has been rolled out, in a pilot and more formally, in Scotland for a while. In England, they're rolling it out, and in Wales, in the last year, a pilot has started. But I think, from my understanding, training took place across all the health boards, but not all health boards felt in a position, because of capacity, to take part in the pilot. So, that's where some of the log jam comes in when you're trying to take a new innovative piece of technology and incorporate it into pathways.

Okay, thank you, Gerard. Sarah Murphy.

Thank you, Chair. Thank you for being here today. I'm just going to ask a few more questions about the screening programme. So, modelling shows that the number of screening colonoscopy procedures performed will increase from 4,600 to 6,900 this year and plateau at over 12,000 procedures on completion of optimisation of the screening programme in September 2025. So, our question is: do you have confidence that endoscopy services will have the sufficient capacity to deal with this? I know you've already touched on recruitment and retention and staff pressures, but, I suppose, does that mean that you don't think that this is achievable?

I wouldn't say that. I think what I would welcome, in the approach that Bowel Screening Wales have taken, is this phased approach. They haven't just looked at where they want to get to and said, 'Okay, we're going to make a change and see how we get on'. They've looked at it in quite a considered way, to move year by year. And also, I think, to the credit of Bowel Screening Wales and the ambition in Wales, the sensitivity of the bowel screening test—the threshold is going to be improved as well. If you look at what's happening in England, for example, they're changing the age, but the threshold there's no plans to change.

I think there's a valid concern about what is that increasing pressure going to look like. We know that with people being invited into the screening programme participation is increasing. This is a really good thing. Again, from about that period, last year of April/May time, I think the detection rates are staying roughly the same, which is, again, a good thing. I think the question then is how does the bowel screening programme become even more efficient moving down the line, because we're seeing screening endoscopy demand is also increasing and waiting times are also increasing in certain areas. There's a disparity across health boards, with some having endoscopy waits for screening of 17 to 20 weeks at times. So, there's considerable pressure on those services. Different areas have taken different approaches through changes to pre-assessment appointments and how they can try and be more efficient, and how they do those.

I think the thing for us is to ensure that that workforce plan feeds in. And, as Katie was saying, looking further down the line, first of all—I'm just echoing Katie again—the data isn't really there to say, 'What is the current workforce like?', and then looking at, say, Office for National Statistics data, for example, to see what are the demographic changes coming down the line in, say, 10 years' time. I think the endoscopy action plan was dealing with problems of its time. I think we need to look at what's going to happen in 10 years' time and start planning for that, and then that will hopefully address some of those concerns that you've raised around, 'Where will we be in 2025?'

Just to add to that, we really support the optimisation of the bowel screening programme, and similarly welcome the phased approach. We're of course advocating for people affected by cancer, so the more people we can support to diagnose quicker and be treated quicker, the better. So, sometimes we say, 'Go further, go faster'—actually, we think the phased approach is really positive because it means that it's understanding the demand. There will be an additional, I think, 172,000 people receiving screening kits by October this year than they would have done previously. That is a huge number, and that's really great and really ambitious. Of course, that has and will continue to have an impact on demand and capacity, and that's why we're saying, I guess, that workforce is the biggie.

That's really helpful. Thank you very much. You mentioned the comparison with England and where we're going in the future. Bowel Cancer UK says that the UK National Screening Committee recommends further reductions in FIT sensitivity, with a reduction to 20 µg/g, but that, to date, no UK country has set out plans to reach this level. It says that there's an opportunity for Wales to move to a UK leading position on this. So, taking everything into account that you've talked about, how achievable do you think this is?

I think that's something that probably needs to be looked at as we move towards the end of this optimisation. The focus has to be on the optimisation of the programme as it currently stands. But we do see that Wales is coming from a position where it's towards the back of the pack in the UK, and there is an opportunity to move forward and take that leading position. There are two ways that we could see the screening programme evolve in future. Again, over that potentially 10-year period of time, probably longer term, you could see that increased sensitivity and reducing the threshold to 20 µg/g, which makes the programme most cost-effective, actually, because at that stage you find more people with pre-cancerous polyps and it becomes slightly more of a preventative programme. But the other aspect that we could look at—and some research, I think, is about to commence on this—is looking at a risk stratification or personalisation of screening, which would then look at an individual's own circumstances, what was their previous score, what are the contributory factors. It could be based on sex, ethnicity or family history. These sorts of things could impact on how frequently someone was invited into the programme. But these are things that, obviously, we need to have more information on and research before we can take that forward and look at that.

Thank you.

Thank you, Sarah. What was that research that you were referring to, Gerard?

There are plans in place. I think there's all sorts of work that's being done to try and source that research, but I don't believe it's commenced as yet. I think there are plans to look at it, because that's the sort of direction of travel, to look at how screening programmes—and probably not just bowel screening—can be more responsive to the individual.

Joyce, do you want to come in?

We all understand—and you've reiterated it many times this morning—that early diagnosis is key. Underpinning that, of course, is how you test, how you diagnose. We've had this representation by Bowel Cancer UK that the existing FIT—. What I've read underneath is that it could be missing early stages or early opportunities to diagnose people because the sensitivity bar is too high. That's what I've understood. But running alongside that, of course, there are other new types of testing that are coming on stream. So, if you were the Minister, where would you put your effort?

I think there's a couple of things there. I think with the FIT, in terms of the screening programme, absolutely the threshold needs to come down. If you look at symptomatic testing, the threshold is set at a level of 10 µg/g. That's obviously people who have come along, they've got symptoms, the threshold is much lower for them. If you bring the screening programme's threshold down towards that 20 mark, then you iron out a lot of the differences. There's variation between men and women in terms of their detection rates. I know that discussions have happened in other parts of the UK—although no plans are in place—around, potentially, different thresholds for men and women to try and level out that detection level.

Looking at a symptomatic case, I think one of the big issues is awareness. First of all, it's how can the Government support efforts through, perhaps, national awareness programmes, not just for bowel cancer—I think all cancers would probably like this—but awareness of symptoms. And, also, not just being aware of the symptoms; we found, through some research we conducted last spring that about 47 or 48 per cent of people in Wales couldn't name a single bowel cancer symptom, including things like blood in your poo, which is a real red flag. So, there's a big issue around awareness, and that falls on us as a charity as well. But it's about how can we drive up awareness of symptoms, and also knowledge of the action that an individual should take once they recognise that they have one of those symptoms and have that conversation with their GP to get into the pathway. 

For me, I guess you're right. In Wales, and in other nations that aren't fully in line yet with the UK national screening committee's recommendation, we are not as sensitive, and we are not covering the whole age cohort that the recommendation sets. That means we are missing people because of that, and are missing opportunities. I guess if I was the Minister, I would be throwing everything at capacity and workforce, because with the challenge of increasing or reducing the threshold—making it more sensitive—demand wouldn't be able to keep up. So, I guess I would throw everything at the workforce capacity at the moment. 

Do you have any other questions on patient referral pathways, Joyce?

I do. There are challenges within the referral pathways, and this is part of that. Is there anything that you haven't said that you feel you want to say about referral pathways now, so that we can better serve people?

I think one of the things I've probably not mentioned in terms of the qFIT, the symptomatic FIT in primary care, is that that has been rolled out across most of the health boards, I think. There's one health board that has plans to complete that by April this year. What we are seeing—and it's anecdotal, so, again, it goes back to data, which is a big thing, understanding what's going on, and this is across all the nations in terms of the use of qFIT in primary care—is the impact it's having on that risk stratifying of patients, and seeing who needs to be referred on for endoscopy. Because we've heard from some areas that they've seen a reduction in demand on endoscopy services because of the use of qFIT within primary care. Some parts of Scotland and England have seen maybe a 20 to 25 per cent reduction in demand. That could potentially, if used properly, help to ease pressures further down the line, but I think it still requires that workforce increase, because more people coming in, more awareness of symptoms, is going to have a pressure on the pathways. But I think at that earlier stage, there is something about how we ensure that patients are aware, that the public are aware, of symptoms and what to do if they've got them, but also making sure that healthcare professionals have that awareness of the benefits of qFIT and the advantages it could have and trusting in that system when it comes to referral.

For me, I'd really reiterate the need for public awareness campaigns. They continue to be really, really important and really effective at getting people to the GP but also getting people to take up screening tests and for it to be at the forefront of their mind. One thing I haven't touched on yet is that access to and take-up of screening is not equal. Some groups are much less likely to take up screening than others, and therefore this has an implication on rates of diagnosis and inequalities that exist throughout the cancer pathway. We know that men are less likely to take up screening, younger age groups within the screening programme also, and more deprived communities are less likely to take up a screening offer. This all then feeds into inequalities that exist further down the pathway that are avoidable, I suppose, and just feel unfair.

Thank you. Jack Sargeant.

Thank you, Chair. That leads me on nicely, Katie. You're not the only organisation to recognise inequalities. Gerard has as well, but we've also heard it from the Welsh NHS Confederation, for example. How do we tackle that? You've mentioned public awareness campaigns, but are there any more specific actions that we may wish to take? Katie first and then Gerard.

Firstly, there is still more to know about what groups and what motivations and culture exist behind inequalities that exist within cancer more generally. CRUK are the secretariat for the cross-party group on cancer, for example, undertaking an inquiry at the moment into cancer inequalities. There's a lot we're uncovering there; there's a lot we're not. There's a lot we don't know—the data doesn't tell us. That's something I'd be really interested in looking at. Public awareness and doing really targeted campaigning is really important. Again, there is lots of evidence on how and where are these campaigns happening, who are they reaching, what sort of community champions and people are involved in getting messages to the right groups.

Also, something that we know is really effective is direct contacts—so, for example, in screening, follow-ups from primary care services to patients to remind them that they've received it and to remind them of the choices involved in screening and the informed choice that is involved, but also the benefits of it. That, I don't believe, is something that happens systematically in Wales at the moment, but it's something we'd be really supportive of. It's about more people understanding motivations and cultures around participation and access.

Can I just pick up on that point? You said the data doesn't tell us. Is that because the data is simply not there, or the data is not being analysed properly or collected properly? We've heard this a few times.

My understanding, and I will go back and talk with colleagues about this—

I'm not trying to catch you out. I'm just saying—

No, no. I think we know more about, I guess, income and deprivation and what impact that has on access to services, and regional variation. That's one of the inequality groups that we do know a bit about, but that's not the only inequality that people experience. So, yes, I think there's much more to know. I don't know why we don't.

All I'm trying to get at is if—. It's not you; it's the Government. If the data is there, why isn't it being used in a way that is—? Or, do we need to find a way of collecting it and—? 

Yes.

That's what—. Perhaps you could have a think about that.

Yes. I would assume it's the latter, but I don't know, so let me come back to you.

Okay. That's fine. Thank you.

Gerard, in terms of bowel cancer, I think you've mentioned some specific actions to the committee already—GP letters to endorse screening, and so on. But you've also mentioned the personalised approach to screening. Could you just perhaps tell the committee what that looks like and how that would be achieved?

Yes. So, as I said, this is where we need to see research to, again, understand how those inequalities may play off against each other, because there could be compound effects and the more of these boxes that you check might increase your risk. So, I think we need to see what data can come out from some of this research to understand what that would look like and then be designed based on that and be evidence led. But I think the idea would be that it would be something that would be tailored to an individual's needs, based on what their own risk would be. So, you could categorise people based on their risk of developing, and screening could then hopefully pick up people in a more accurate way in a timelier fashion.

So, again, that research needs to happen and it hasn't. And then—. 

Yes.

Okay. I'll leave it there, Chair. Thank you, both.

Thank you, Jack. Gareth Davies.

Thank you, Chair. I would like to talk about Lynch syndrome and the surveillance of people who have the gene, essentially. What is the quality of that monitoring and how are people captured within that system?

I'm happy to go on that one. Just to give a bit of background, about 3.5 per cent of bowel cancer cases are people who have got Lynch syndrome. Wales was the first of the four UK nations to commit to testing all newly diagnosed bowel cancer patients for Lynch syndrome, and then there's the potential for family testing to put people on that surveillance pathway. There are a couple of things on both the testing and the surveillance side where, again, we go back to data about what is happening on the ground, and we're not quite sure. We don't know exactly if 100 per cent of newly diagnosed bowel cancer patients are being tested. Are there delays in the surveillance side of the pathway for people who have been found to have Lynch? We don't really have that information. Now, there were discussions through the national endoscopy programme board around an audit of Lynch. That, so far, hasn't happened. I think part of that, again, goes back to capacity issues and having the time and the space to look at what the data is telling us. Something we're very interested to know is what is happening to people once they're on that pathway.

I know that one of the other issues that we raised in our submission was around Joint Advisory Group on Gastrointestinal Endoscopy accreditation within the screening programme. There is also the potential, which we would like to see, for Lynch surveillance either to become its own national screening programme—and we've submitted to the national screening committee on that—but also looking at perhaps the surveillance in the meantime being brought in-house within the bowel screening programme and marrying that up together, so you've got that real structure to surveillance of people who have got Lynch syndrome. But also with the JAG accreditation, because of the thresholds that have to be passed in order to meet that accreditation, you know that you're getting a high-quality colonoscopy taking place, and the chances of picking up someone who has got Lynch syndrome and is developing risks—so, perhaps polyps—

So, to pick up on that capturing, I think it's at 25, isn't it, that you're first introduced into screening for Lynch syndrome. Is that the right age, do you think, because you're quite established into adulthood by the age of 25? There have been some cases, in fact, of it actually going up to 35 if they're deemed to be a lower risk. Is that right, because when you get into your 30s, you're more established into adulthood and those issues might be developing under the surface, but there's not the testing or the diagnostics there to get people introduced? So, if you've got Lynch syndrome and it's known to be a hereditary cause, then would it be more effective to get it in earlier, maybe at 18, 19, 20, 21, for example, to make sure that people don't slip through the net?

I think that's a really good question. I would have to say I don't know what the evidence is around that to see where it's most effective in terms of age. So, I wouldn't want to say that, yes, it should be higher or lower than that level. But I think the question you're posing is the right one: where should that level be set? But I can't say today what I think that should be.

That's fine. Just finally, on women particularly, because I know that when women who do have Lynch syndrome are advised, when they are told that they do have it, that they should have their children sooner rather than later, and I know that from personal experience. That's frightening, isn't it, to hear that? So, around the mental health support that's around that, and the, not maybe life planning, but more of a holistic package around that, what's there to support people with that news? Because they don't expect this; they're trying to live their lives to the best of their ability and then they get told that they've got a hereditary condition. So, particularly around women, anyway, what sort of holistic support would be available to somebody who would be told that news?

To be honest, I've not heard of that advice before, sorry. But what I would say, again, is that patient information is key, and I think, as you're saying, if there are issues around the potential for—. When we talk about familial testing, for example, it's really important that there is genetic and genomic counselling. Around that, I think it probably comes down to the same sort of space there: what counselling is available for anyone who is affected by Lynch, the implications for their own health, and then, say, further down the line with their own family. So, I think there's probably an issue there to look at around what is patient information like, and what are the support services around that like. But about that specific recommendation, I've not heard that before, sorry.

That's fine.

And similarly, I wouldn't be able to comment on that or, I guess, the age thing. The only thing I wanted to add to Gerard is: I understand that England, I think from this year, will be including people with Lynch syndrome into the bowel screening programme, and we support the recommendation from you guys that Wales could and should follow suit potentially, or should be thinking about how to do that, and as you say, it offers a real system and a really established one in order to support surveillance.

Thank you very much.

Thank you. Joyce Watson.

I want to ask: the national endoscopy programme focuses on gastrointestinal endoscopy, but there are other types of endoscopy that are used in the diagnosis of different cancers. One of them is cervical cancer, another is bladder, and I'm sure there are others too, and they're not within that scope. So, should we be concerned about the fact they're not in the scope? And is there a knock-on effect, therefore, from waiting times and also the capacity to deal with those?

Shall I come in on that one? You're absolutely right, endoscopy is not just used for upper or lower GI; it's used for bladder, womb cancers, and others, and I don't think I'm able to comment, actually, on whether it's a huge problem that they're not included in that same way. I guess what I wanted to point to you in terms of non-GI cancers and endoscopy is that if you look at waiting lists, for example, for things like gynaecological cancers, waiting times are really, really below what the expectation is—sort of really behind—and I know it's something that the committee are looking at in particular, probably because of that. Endoscopy also plays a really important part in the diagnosis of these cancers. They're also often the cancers that are hard to diagnose and often hard to treat because they're diagnosed too late. So, whether that's a—. I wouldn't want to comment on that. I'll chat to colleagues, I guess, and come back to you, but, yes, it's something we need to remember when we're talking about endoscopy, we're not just talking about the bowel and stomach, for example; we're talking about other cancers as well.

Okay.

The only thing I would add is just echoing that last point, that we recognise at Bowel Cancer UK that there are other cancers where endoscopy is used that aren't just related to bowel cancer, but I wouldn't want to speak on behalf of any of my colleagues in other charities that represent those particular cancers. I don't feel I'm qualified to give an answer on that one, sorry.

That's fine. Thank you.

Thanks, Joyce. Can I just ask for your views on the benefits of the JAG accreditation and the support needed by services across Wales to apply? 

We completely support the move to JAG accreditation. I know that there have been delays in that regard. I know COVID has had an impact, initially, on that, and then, obviously, the longer term effects on demand, capacity and workforce. There is a strain to try and meet the thresholds that are set for accreditation. I think what we've seen is that there has been some progress that's been made and I know from the national endoscopy programme board that that ambition is still there. What they're looking at now is a more targeted approach, looking at the areas that I think are closer to, maybe, meeting the threshold and supporting them over the next year. I suppose in a similar way to the bowel screening approach, where it's more of a roll-out that focuses efforts one bit at a time. I suppose there's always the possibility that, if you try and move every centre to JAG at the one time, you can't provide the same level of support that may be required to reach that standard. So, I think a phased approach because of the current workforce and capacity situation is probably the right approach to support those who are closest to getting over the line, and then looking at the next areas that would require that support. But, yes, we would absolutely endorse a move to JAG accreditation as far as possible, and, again, going back to that point about Lynch, if that is incorporated, I think then you potentially improve the quality of that testing for people who are at higher risk.

Gareth.

Thanks. Just on that point, if somebody does have or is found to have polyps in their system, how quickly are they acted on? So, are they acted on on a priority case basis, or if they're deemed to be a lower risk, are they deprioritised, in that case?

You can, through the screening programme, where we see this, the people who have polyps that are identified, they can be removed at the time. So, there's no need for a follow-up procedure; you can spot the polyps, you can remove them, and then the key thing is notifying the patient as to what you found, the implications for them and if there's further surveillance that needs to take place. The only thing would be if there's a more complex polyp, maybe a larger polyp that needs to be removed, and it might be a bit more invasive, so you may need to schedule that later.

That's one of the things that I was saying about if you have that more cost-effective bowel screening programme of 20 µg/g, you would then pick up more of those polyps and potentially move in a preventative space to remove them, which could then ease pressure further down the line. I suppose, if you're doing preventative and removing polyps, then you reduce the need for treatments and the costs associated with those, and the demands on the health service further down the line.

Thanks.

Are there any key messages or priorities that you would like to leave the committee with?

I guess, for me, the national endoscopy programme is really focused on, for example, supporting centres to be JAG accredited, supporting capacity and is really thinking about workforce. We know the impact the pandemic has had on services across the board, and endoscopy was not immune from that in any sense. That has created a huge capacity problem, and there is more demand. So, I think there are efforts there that really need to be welcomed. There are two things I would like you to leave with on this—it's obviously the workforce issue, but it's also thinking about innovations as part of the solution, not just a shiny nice research to have. It will be the thing that helps in the future, more long term.

Thank you, Katie. Gerard.

Yes, I'd just echo a lot of that. I think, and Katie mentioned it earlier on, the efforts of the NHS in Wales over the last few years have been phenomenal. I think if you look at the bowel screening programme, for example, there was a lengthy pause because of COVID, and we've seen that across the four nations, but, with the fact that there had already been a commitment for the optimisation and that then had to be delayed, there was a real endeavour to catch up with the backlog, so that they could take it forward, starting in 2021. And I think that was commendable, the amount of work that was done to catch up with the service. I think there's been a lot of success so far in terms of some of the actions being achieved, but I think the goalposts have shifted as the programme has been in place. I think the increase in demand, the pressures on workforce, have only gotten greater. We talk about COVID and the pressures of that—pressures existed prior to that, that's why the endoscopy action plan came into force in the first place, but those pressures have increased substantially, and I think it's about workforces looking at innovation, it's looking at data to help us to understand what's going on, and planning for the future and being as innovative as possible and working as cleverly as possible across the country, finding those areas of support. I think the cancer improvement plan did have something in it, with the national diagnostic board looking to try and find equity of access to diagnostic, genomic and staging tests, those sorts of things. Looking across an all-Wales approach is probably something that would be really helpful moving forward.

Okay. Thank you, Gerard. We'll send a transcript of the proceedings from this morning. So, by all means have a look at that, review it, and, if you think you want to add anything to what's been said this morning, then please do so. But we're really grateful for your time this morning. Diolch yn fawr iawn. Thank you. 

Thank you very much. 

Thank you. Thanks. 

We'll take a 15-minute break. Thank you. 

Welcome back to the Health and Social Care Committee. We move to item 3, and this is our second panel in regard to evidence on our inquiry into endoscopy services. We have a panel of two witnesses this morning. Perhaps I could ask you to introduce yourselves just for the public record. Do you want to go first, Sharon?

Yes, thank you very much. Bore da. So, my name's Dr Sharon Hillier. I'm a consultant in public health and I'm the director of the screening division, so have responsibility, including the bowel screening programme for Wales.

Thank you.

My name's Steve Court. I'm the head of programme for bowel screening Wales, so, obviously, just responsible for the bowel screening programme.

Lovely. Well, thank you for being with us this morning. I wonder, just to set the scene, if you could give us a brief description of the bowel screening programme and your role as well in commissioning colonoscopy and diagnostic services. 

Okay. So, I'll start and then Steve can fill in the bits that I miss. So, the bowel screening programme is an evidence-based intervention and it's in line with the UK National Screening Committee's recommendation, and it's a programme to identify bowel cancer early to reduce mortality from bowel cancer. So, the programme operationally, we invite—from October last year, 2022, started to invite—people aged 55 to 74, and we send them an invitation and a bowel screening kit through the post. So, it lands on their door, and they complete that bowel screening kit at home, and they send that kit to our laboratory in Magden Park in Llantrisant and we analyse it to see if there's any human blood in that sample, and if it reaches a certain threshold we will then invite them for colonoscopy to investigate whether they have a bowel cancer or whether they have polyps. So, if it's a bowel cancer, that identifies the bowel cancer early, and, if it's polyps, the polyps would be removed, and most bowel cancers will develop from a polyp, so it's a little bit of catching things early, but actually preventing bowel cancer developing in the future.

So, in terms of the responsibility, we have responsibility in Public Health Wales to call and recall people from their GP. That information has been registered with the GP, sending them the invitation. We process the kits in the laboratory and then we send the letters to the people for their results. If it's positive, the person will phone our pathways team and book in a specialist screening practitioner discussion in the health boards, and if they're fit for colonoscopy, then they'll go forward for a colonoscopy. 

So, in the kind of numbers game of it, we will send a kit and 98 out of 100 will have a negative result, and they'll get that result really quickly. So, within seven days is our standard. It's usually about two days that we'll get that kit back out, and then the 2 per cent will be positive and those will progress to a colonoscopy. So, we purchase, we commission the health boards to provide the colonoscopy service across Wales, and we accredit colonoscopists. So, we have colonoscopists who are accredited to us at an agreed standard, so, they've done lots of procedures in the past and are quality assured, and they undertake the colonoscopy for us across Wales. 

That was such a helpful explanation of the process, thank you. 

Did I miss anything, Steve?

Just—. I think you mentioned it, but we essentially screen asymptomatic patients, so they're people without symptoms, and our cancer detection rates are around 10 per cent. So, in our screen, positive people—. As Sharon said, 2 per cent of them are positive, and 10 per cent of that group then will have a bowel cancer diagnosed, and about 70 per cent have a polyp. So, we have quite high pathology yield in Wales. The vast majority of our people if they screen positive with the kit from us will have some sort of polyp or something that needs to be removed.

Lovely, thank you. Lovely. Rhun ap Iorwerth.

Diolch. So, again, I'll start, because then Steve can make sure that I've picked up everything. Yes, there is a difference in terms of people responding. It's improved the uptake over time, and one of the reasons it's improved the uptake over time is that we've changed the screening kit. So, now, you have to do one sample and send it in. Previously, you had to do three samples, and that was quite complicated to do. So, actually, it's a much easier kit to complete. Over the period of time—. If we look over the last few years, the last time we had this committee, we had an uptake overall of about 58 per cent. Now, our uptake is 66 per cent, so it's improved over the last few years and always improving. So, we're on an improving uptake, which is really, really good. Now, interestingly, we measure the uptake every month, and in November of last year, it reached 70 per cent; it was the first time it had gone to 70, so we were really pleased with that. I think it was interesting because that was six months after there was a lot about bowel cancer in the news, with the sad passing of Dame Dorothy. Sorry, I've got the name—

Deborah. 

Deborah. I knew it was the wrong 'D', so, apologies for that. So, it was interesting that, with things like that in the news, awareness might have peaked our uptake. So, it's been a gradually increasing uptake, which is great, but, as ever, we're really focused on inequities and variation across Wales. So, men are less likely to take up the offer than women. A few years ago, that was a 3.7 per cent difference; it's now 2 per cent, so that is narrowing, but still, there's a bit of a difference. And then, looking at social deprivation, there is a marked variation in different areas and deprivation. So, currently, that, again, is reducing over the years, so it's about 14 per cent difference between the most deprived and least deprived. And our current position now—. So, our most deprived more recently has got an uptake of 58 per cent, but the least deprived is 73 per cent. 

So, if we go back a few years, we were quite happy—well, we weren't happy, but our overall uptake was 58 per cent. So, over the years, the most deprived has increased but there's still variation across. The geographical variation matches the deprivation, really, so, there is variation across the health boards. I suppose it's really important to know that, actually, this is an equitable offer across, so when we send out it's on an age base, so there isn't a geographical variation in our offer—it's a very equitable offer, landing on people's doors. But, actually, there is variation and that's our focus, really—getting the most deprived indicators increased. 

It's probably easier if you just maybe keep them on one ear, rather than take them off and on—perhaps that would be easier. 

I'll take it off. I can hear myself, sorry. So, we are comparable to other countries, and other countries have seen this increase as well. I think we may be a little lower than England's figures overall on uptake. 

Yes. England do theirs regionally, so they've got large regions rather than a whole country, so it varies across the regions, but when we speak to the English programme, their uptake is around just shy of 70 per cent. So, we're slightly lower as a nation than the English nation. 

But similar. 

Yes.

Are you able to compare or drill into the data of people who present late with bowel cancer? How many of those were not screened, did not take up the opportunity to be screened, and so on? I'm thinking of how to strengthen the message around the importance of screening. 

Yes. What we know from audit data, and that's at UK level, is that, depending on the routes you get your bowel cancer diagnosed, your survival is affected or is improved. So, if you get identified with bowel cancer through screening when you don't have symptoms, as Steve explained, you've got a 90 per cent chance of survival and cure. If it's going through symptomatic, so you go to your GP with symptoms, it's 70 per cent, and if you're coming through to accident and emergency as an emergency, it's 4 per cent—40 per cent, sorry. So, that's what we know in terms of the audit, in terms of the routes.

We haven't done a large piece of work looking at the people who haven't come through or haven't taken their uptake, but what we've done is looked at the staging in Wales with bowel cancer, and what we're really trying to do with screening is bring that staging to the early-stage cancer detection, but we haven't looked at mapping people's routes through in detail in Wales. It's just providing audit data, which is coalesced in a national audit, which gives us that work, really, that through screening, there is a higher rate of cure.

Maybe, as well, you could comment on whether that would be a worthwhile exercise, because it strikes me as being useful data, if only for hammering the message home. You obviously want to push up the uptake rates; what are the plans, what have you got planned in terms of increasing spend on advertising, targeting under-represented groups, dealing with the inequalities?

So, if I start overall, and then, maybe you can talk about the GP stuff that we're doing. So, when we moved to offering 55-year-olds, back in October—we run a social media campaign just to raise awareness, and we are working very closely with charities, actually. They're around our table on the programme board, and it's really fantastic in terms of their support, to target those messages, really, in terms of the younger age. We are also working across the system. So, we are focused on inequities, and there are two bits of work that we're doing around GP-endorsed letters and also work around learning disabilities, so I don't know if you want to pick those up, Steve.

Yes. I'll pick up the GP-endorsed letters first. We've done a number of small-scale studies over the past few years regarding the use of GP-endorsed reminder letters and follow-up telephone calls, and they have shown that that is effective. So, we did a large-scale study lately in Hywel Dda—3,000 non-responders, targeted those with a GP-endorsed reminder letter and a follow-up phone call, and in that group, we increased uptake in our targeted group by 13 per cent. So, that showed the benefit of the GP-endorsed letter, and the theory is that people relate better to their GPs than they do to Bowel Screening Wales. So, they had a trusted source, people get a letter through the GP and they then respond. So, it's an evidence-based approach, so on the back of that, we have now managed to get that approved across Wales. So, we're at the stage now where we're asking GPs to opt in to this GP-endorsed letter process. So, the plan is that, late February, beginning of March, we will roll this GP-endorsed letter out to everybody. So, that's a GP-endorsed letter primary invitation and a follow-up non-responder letter. And, looking at the research in the literature, that, across the piece, will hopefully increase uptake by around 5 per cent—5 or 6 per cent. We had 13 per cent in the targeted group, so we're not expecting a 13 per cent uptake increase, but we're hoping for this 5 or 6 per cent across—. And that's something, coming back to the English programme, that's something that the English programme does: they use GP-endorsed letters, so, that may be the reason that their uptake is slightly higher than ours, because they've already got GP-endorsed letters in the programme. So, that's one element we do, and we're quite excited by this, because, at the moment, we've got just 215 GPs who have opted in; we're still in the process of asking for the opt-in. To date, only five GPs have opted out, so we're quite confident that we're going to get the majority of GPs to opt in to this process.

And then, as Sharon said, then, there's the Learning Disability Wales piece of work. So, we linked in with Learning Disability Wales to do focus groups with participants with learning disabilities, and they've come back with a range—they've written a report with a range of recommendations for us to implement, and we're working through those recommendations. And this is really about making the screening experience better for people with learning disabilities. So, it's changing our literature to make it more amenable to people with learning disabilities, making the screening—if they then become screen positive—making the experience in the hospitals more conducive to people with learning disabilities.

And the typical things we're trying to do is, as Sharon said, we have a nurse assessment before every colonoscopy—that tends to be a telephone assessment. What we're advocating is for people with learning disabilities, that would be a face-to-face assessment. So, they would come into the unit, have a face-to-face discussion, and there's an opportunity, then, for them then to be shown around the unit, so when they come in for their procedure, they know what to expect. So, it's that type of approach as well to try and—. So, looking at increasing uptake, but also trying to make, for specific groups, the screening experience better for them as well.

Forgive me. Do you have a target that you are pushed to try to reach on uptake?

No. Well, the target is 60 per cent, so we're over our target, and that target is the effectiveness of the programme, that 60 per cent have acceptability. So, we're above where we know the programme is effective. So, we don't have an upper target, but it's all about informed choice, and that's the aspect of it—. There's the uptake that people are making that informed choice to take up this offer.

That's useful. Diolch, Gadeirydd.

Jack, did you want to—? Sorry, you've finished, haven't you, Rhun? 

Yes.

Jack, did you want to come in on this?

Please, Chair, and thank you. Good morning, both. In the previous session—. It links back to the point that Rhun said on the back of the data. You mentioned that you've got audit data, but you don't have the other data—you don't collect the other data. And that piece of work, I agree with Rhun, it does seem like it would be useful to have. Bowel Cancer UK and Cancer Research both agreed—or certainly the way I read into it—that more research was needed to be done to understand why people aren't taking up the offer of screening and so on, not just in the most deprived areas, but across the range of those lower take-up groups. So, is there a plan in place? Is that research—? Do you agree with Bowel Cancer UK and others that that is important work, and is there a plan for that work to happen?

Yes. So, there have been a few pieces of work around looking at our non-responders and understanding, and there's also work at a UK level, and one of the key bits is people not understanding that we're asking people who don't have any symptoms. So, they don't perceive themselves at risk of bowel cancer, and they don't understand that it's something to do if you don't have symptoms of bowel cancer. So, the bit about the research then is when we moved to the FIT, we knew that the research said that if you implement the FIT, it's simpler, and you will reduce inequities and improve uptake. So, that's one of the key bits of implementing the new test, was based on the research to say, 'This test is better. It will improve the uptake to the programme.' So, that's been a real focus around us doing that. So, I think, then, it's that messaging to say, 'We're asking you, and you're not expected to have symptoms, but that is applicable to you to take up.' So, they're the messages that we've had from the research that we work on.

I'm grateful for that. But, would you say that there's no need for further research, that you know what the problems are, and it's about applying that solutions-based approach, rather than delving into more? Because they seemed to suggest that—the way I understood, Chair—there was even more research that they needed to do and delve into it more to understand why people—.

Yes. So, I think it's always important to research and evaluate, and things will change over time as well. What we also looked at during the COVID pandemic is—Cardiff University worked with us to look at the literature to say, 'Right. We understand the barriers previous to the pandemic. Is there any literature or evidence about the barriers now, during the pandemic?' So, that was a really good piece of work that they looked to say, 'Look, have the barriers changed?' So, we're always up for looking and evaluating. The bit that I was trying to get across is that we also know already that there's evidence that we want to be implementing. So, Steve is talking about the GP-endorsed letters. We know that that works, and that's based on our evidenced approach of it working. So, we're really keen to implement these things that we know will make a difference.

Okay. Thank you.

Thanks.

Thank you, Jack. Joyce Watson.

Good morning, both. I want to talk about the optimisation of the bowel screening programme. We've talked numbers already, but there's another number, isn't there, and that is that we're going to meet the target in Wales by September 2025, as recommended by the UK National Screening Committee, that all individuals registered with a GP from the age of 50 to 74 will have a FIT. Are we on target?

Yes. So, our plan is—. We implemented the FIT, that's fantastic, it's done. In October 2021, we moved the age range down to 58, and, actually, looking at our data, that's performing really well. So, in that first—. Because it takes time to look at the data and to know how it's performing. So, in our 58 and 59-year-olds, the uptake is in line with our expectation, and we've identified it was 71 cancers from that age group that we know about, and a good proportion of polyps—that's working well. And, then, in October 2022, we've implemented to start the offer for 55. So, the plan is on line, and we're working on the plan, and then we've got two more key bits. So, October 2023—so, this year—we want to be bringing the age range down to 51, and then we'll know the FIT cut-off as well, so it's more sensitive, and then, from October 2024, that will be 50 FIT and 80.

So, we're in line with our plan now, but it's fair to say the plan is ambitious, and the bit that we have physical control over, in terms of the invitations, the sending the kit out, and the laboratory, that we can scale up; that's within our gift to do as a programme. The constraint in the system is the capacity of colonoscopy that we have in Wales. So, the way the plan has been devised is to get the best benefit the quickest, which is why we're going age range down, but it's in line with the numbers of colonoscopies that will have to be provided across Wales, and that is a step up. But we've kind of got our expectations; we know what we need to be planning for. But it is a step up in that capacity. But we're on line now, and that is our absolute aim to be delivering that, because we know that that will benefit the population in Wales.

Did I hear you say—because it was going to be the next question—that you're reducing the FIT-positive threshold, and when are you expecting that to happen, because that's a clear recommendation that's been made to us?

Yes. So, from October 2023, our plan is to lower it down to age 51, and then we will reduce the FIT sensitive to 120 µg—

The sensitivity. 

The sensitivity, yes. And that's in line with what England is offering now. And then, the next year, we'll bring it down to 50 is our plan, and then it will be 80. So, it will be more—. So, that's the plan, and that's in line with Scotland, where it's at now.

Can I ask—because there's been quite strong recommendations on that lowering of the threshold—why it's taking that amount of time? There must be a reason.

Yes, it's balance. So, when you have a screening programme, it is from that beginning, the whole way through the pathway, to the cancer diagnosis. And the pathway has to work in a timely way. So, we're always making sure the pathway works in a timely way and not overloading the system. So, actually, the FIT sensitivity, we're managing it in a way that, actually, the capacity and the numbers are manageable. So, if we reduced the FIT sensitivity, more people become positive, and then there's the increase in colonoscopy. And it's managing that system with that colonoscopy capacity in a staged way.

So, if we had enough people to deal with it, you'd lower it sooner.

Yes. The whole system has to be working, yes.

And I think it's fair to say the age expansion itself increases demand, but it is very much that change in sensitivity to 80 that really skyrockets the demand in colonoscopy. So, as Sharon said, we've got to do it in a staged approach; health boards have got to be ready to match our demand. So, yes, it's taking those small steps and doing it, but, as you said, if we had the capacity to do it, we would. We are constrained by that colonoscopy capacity; that's the reality of it. 

That's clear. Jack Sargeant. 

Thank you, Chair. Public Health Wales, in their evidence to the committee, have said the average waiting time for colonoscopy services, the first screening, is 8.5 weeks, but one particular health board, their waiting time is 20 weeks. Why is that so different, and what's being done to address that issue?

Do you want me to pick this up, Sharon?

Yes, thank you. 

Because we meet—. We are meeting this afternoon with our health boards. We do meet regularly with all the health boards, and what we find in endoscopy is we get spikes in waiting times due to staff shortages, and this health board is particularly—. This was around screening nurse shortages rather than colonoscopist shortages, because we need a screening nurse to do the assessment before the colonoscopy, but they're also part of the endoscopy procedure as well. So, they have lost 50 per cent of their capacity of screening nurses, so that has hindered their ability to provide the list we need over November and December. So, we've now got them back to the level we want them to be at, and they've got more staff coming in, but there's a three-month lag between when we can get staff trained. We're in that phase with them now where they are recruiting. We're confident they will reinstate all the lists they need to do, but it takes time, then, to reduce that backlog back down as well. In that particular health board, it's down to staffing and screening nurse shortages, which hinder their ability to provide lists for us.

Thank you for that. They're obviously recruiting, and that's down to a staffing issue. Have they now recruited enough? When will we likely see that get back down to somewhere around the eight and a half—

Can you just clarify which health board you're referring to, as well?

It's Cwm Taf Morgannwg. They've got staff. They're due to start in March—early March. So, they'll be new to the screening role. They'll be in. They will be productive within three months, but it takes three months to get the full training package delivered. So, yes, they will start seeing improvement. We're working with them. Like I said, we need a nurse in the room to collect data for us. We've now got a procedure where we are allowing that screening colonoscopy to go ahead without our screening nurse, so the data is collected retrospectively. It's just about managing the situation with them. We're in close discussions with them. I've set up a meeting this afternoon with them again, just to try and see what else we can do to support. The recruitment is a lagging recruitment, because people have got to serve notice, and there's a lag then in training. They're due in in March, so we will start seeing—. We've already seen improvements, but we'll see further improvements from March on.

I don't want to put you on the spot here, but if the committee were to come back in a year's time, we would see it closer to the average—. I know you can't guarantee the average, but it would be somewhere—

This 20 weeks has only happened in the last two to three months. Before that, they were in the group with everybody else.

And I think the bit is—. We commission the service. We require that service to be provided. But we're not delivering the service. We work very closely with them, with the health boards, but we're talking from our perspective, and obviously the health board isn't here to discuss that.

I totally understand that. Thank you. Steve, perhaps if I could ask you about the expansion or the planned expansion of the bowel screening programme. How are you working with Bowel Screening Wales, and what does that look like for the committee? Do you want to expand on the piece of work there?

Working with the health boards, you mean, or working with—?

Well, Public Health Wales, Bowel Screening Wales, and the way they work with the health boards, yes.

As Sharon said, we've got this plan for age expansion. It's a four-year plan. We're two years in. We've been meeting prior to that plan, just to try and pave the way with health boards, so we tell them what's coming. We've modelled all the demand for endoscopy, radiology, pathology, surgery. We've shared all that with the health boards. We've shared it with the national endoscopy programme. We work with them to try and recruit more screening colonoscopists. We have an accreditation process that we put them through—JAG accreditation. We've got Wales-based assessors who put on one-to-one mentorship sessions with candidates. It's all about trying to get that stream of new colonoscopists coming through, because undoubtedly we know our weekly demand for screening lists is going to increase year on year now, for the next two or three years, so we just need that capacity in the health boards to help us meet that. So, it's multifaceted. We need more endoscopy nurses. That's in our gift, so we've recruited 25 per cent more screening nurses in the last two years, because we can fund that. They work for our programme only. We're trying to work with the health boards to try and recruit more screening colonoscopists. We've put more support into that process, so the hope is that people go through that accreditation system once, and they're ready to pass rather than fail and come back a second time. But we would also need more, obviously, physical estate as well. There's only a limited capacity and theatre space in health boards. 

And what we're trying to stress to health boards is, obviously, you're going to get more requests coming through the screening route, but in time there will be less coming through the other routes, because we'll be picking more people up through screening. That will take time—I understand that—for that to materialise in health boards. So, this is a message we tell them. There's going to be more demand our way, but we aren't suddenly diagnosing more people with cancer in Wales; it's still that 2,000 to 2,200 people a year diagnosed with colorectal cancer, but they just get diagnosed through a different route. They're coming through at an early stage, and as Sharon said earlier, that's the stage where 90 per cent will get treated, rather than coming through the GP and A&E routes later. So, it’s the same demand, but just presenting at a different point at the door, really.

Okay. Thank you, Steve. Just finally, Sharon, you very eloquently put the route of diagnosis at the beginning of the committee and I apologise if I, perhaps, missed part of that. The pre-colonoscopy assessment, I think that’s when you’re referred into the initial bit where, if it’s a negative, it’s probably about two to three days when it comes back and if it’s not, it takes a little bit longer.

Yes.

Those two out of the 100 that do test positive and take that little bit longer, does that cause a significant delay in the route through colonoscopy services, or is it just a standard waiting time? Are there problems there? Can something be done to quicken that up?

Yes, so I think that when you get your FIT test result, you’ll get your result the same. So, the two that are positive and the 98 that are negative will get the result letter at the same time. So, there’s no delay in getting their result, it’s then that they make contact with our pathway staff and then they’re booked into a specialist screening practitioner appointment. Now, previously, we did have some waits for the SSP appointment, but Steve and the team have worked really closely with the SSPs across Wales, and that wait is now within the standard. So, there’s been a lot of work, and I think it’s detailed in our response, really, around getting that wait so that most are within that two weeks. So, they get booked in and have that appointment within two weeks, and then it’s the wait for the colonoscopy. And that’s the length of time that we need to be shortening.

Okay. So, the pre-assessment is where it needs to be.

Most are within our standard now, yes. The nurses are—. Yes.

Thank you. Thank you, Chair.

Rhun ap Iorwerth.

There are a couple of strands, really, but obviously we need more screening colonoscopists. At the end of our optimisation, we think we need 74 screening lists a week. We don’t need 74 screening colonoscopies, I don’t feel, but what we do need is existing screening colonoscopists being freed up to do more screening colonoscopy. They’re a specialised skill that we’ve got. There are a limited number, but a lot of them are gastroenterologists who are then pulled into ward rounds and the like, and so are taken away from the endoscopy. So, it’s a bit of a mix: we need more screening colonoscopists, but we also need those existing screening endoscopists doing more screening, but we also need more clinical nurse endoscopists coming through. We accredited our first clinical nurse endoscopist in November. So, up until November, it had all been medics doing screening colonoscopy. The first clinical nurse endoscopists—. So, I think, going forward, we need more of the clinical nurse endoscopists coming through the accreditation system because they won’t have the pressures the medics have got to be doing ward rounds, doing other specialist procedures. So, it might be easier to dedicate their time more to screening and endoscopy in general.

Are moves afoot to make this a reality? Because I’m sure it’s clear in your mind the things that need to be done, but the question is: are the strategies in place to actually deliver on some of that change that you want to see?

I think the clinical nurse endoscopists, yes. There is a cohort coming through the national endoscopy programme in Health Education and Improvement Wales, where the training is being expedited. It is more tricky having these discussions with health boards regarding changing people’s job plans, because medics are quite specialist in their roles. So, it’s easy for us to say, ‘Dr X needs to do more screening colonoscopies’, but it leaves a gap then and they’ve got to fill that gap. So, that’s the bit that’s a bit more tricky.

We are getting more people putting themselves forward for screening colonoscopy accreditation as well, so we are quite encouraged by that. We’ve accredited another seven in the last couple of years. We’ve got another five in the system at the moment, going through the different stages of the accreditation. So, they’re coming through, but the real game-changer, I think, will be when the clinical nurse endoscopists come through, because I’m hoping they’ll come through in quite large numbers and, as I said, they can prioritise endoscopy over everything else as well.

Providing more screening lists is quite easy to say and it's there headed in your evidence paper to us. Is that achievable? Is it sustainable to build in that kind of ambition for an increase in capacity in that way?

We're optimistic this can happen. I think we have to stay optimistic that this can happen. It is a challenge, there's no doubt about it. With the large symptomatic waits, screening is only probably 10 per cent of the endoscopy workload, so there's a huge chunk of endoscopy that is delayed that isn't screening. So, I understand the predicament the health boards are in regarding trying to balance their priorities, but we remain confident that we will get these extra lists. It needs to be a whole-system approach, not just individual health boards looking at their own individual lists, which is where we're at at the moment. We're having discussions with individual health boards, but I think personally I welcome the NEP—the national endoscopy programme—trying to pull this together as a national initiative that can release capacity for screening.

Dr Hillier, do you share the optimism?

Yes, because it is ambitious, but when you actually think about the capacity that we've got across the system in Wales—. As Steve says, the screening bit is a relatively small proportion of that, but we know when we send the people for a colonoscopy, they've got a really high level of cancer diagnosis and pathology. So, if you like, we are sieving that population and providing that. For the percentage as it is, we need to make sure that, as we increase that percentage over the colonoscopy, that works across the whole system. It is large numbers—whenever we're doing screening, it's large numbers—but it's just making sure that capacity across Wales is being used in the right way to get us our outcomes. That's the FIT symptomatic stuff as well, which is helping in that whole system.

But it's also the other bit that we're talking about. We're talking about working with individual health boards. Steve and the team liaise with all the health boards, and different things will come at different times. But what we don't have in Wales is that resilience across the system—it's very specific on health boards. I think another bit here is actually about working differently with the system to be more resilient so that we can cover and work in a more regional way, but also having that education pipeline, that workforce. Because, quite often, we may have the structure, but it's that workforce and having that pipeline. And it is about the training of those people as well—so, allowing time for them to be trained. So, I am optimistic, but I think we need to be optimistic and ambitious so that we reduce the bowel cancer deaths in Wales from this.

Okay. Diolch.

Joyce, you wanted to come in.

I'm trying to understand how widely the opportunities for nurses to progress are known at the point of entry, because we all know we're facing huge challenges asking people to enter the nursing profession at the moment. Have you considered the benefits of being able to say to individuals that there's a whole pathway that they can progress towards if they so wish in terms of helping people to make those very early decisions? Because we've heard about specialist nurses in many fields now—it's becoming quite common—but is it common knowledge at the point of entry?

I think we need to make it more prominent. We are very excited to have our first nurse colonoscopist. Actually, that in itself is proof of concept and it's working. That's really helpful. I think it's important messaging. I think in the conferences we're talking about, we've got an education day, haven't we?

We have, yes.

That's something we can make prominent in that discussion. But you're right, it's going right to the beginning of it, isn't it, in terms of the education and awareness. And having those pay scales as well, that career pathway, so it's clear where people can go to. Yes, I agree.

On that as well, we presented at the Welsh Association for Gastroenterology and Endoscopy conference in October, and part of our presentation—. This was just trying to explain the accreditation process; it was almost like a recruiting podium for us, I guess. But a clinical nurse endoscopist from the English programme presented as well on her experience of working in screening. I couldn't see on Teams, but in the physical audience there were quite a lot of nurses in that audience, and some of them are clinical nurse endoscopists, so it was trying to get that message through to them as well that people in England have been screening for a while. We're also going to start putting—. I mentioned these mentorship sessions our assessors do for people going through the accreditation process. We have what we call a colonoscopy panel in Bowel Screening Wales, and at our last panel meeting, it was agreed that they would start putting on mentorship sessions for people quite early on in the nurse endoscopy journey to try and engage with them early to provide that support, so that they're not just left; so they realise that when they come in to the screening programme, there's that support mechanism for them as well. Our assessors are prepared to work on weekends and do these mentorship sessions with them. So, I think all this will help. But we do need to get that message out wider as well. The one endoscopist we've got, we really need to make a big deal of that now. It's a coup for us to get a nurse endoscopist, but we need to make that more publicised to everybody. And as Sharon said, the pay scales hopefully will help, because we're hoping they'll be at a slightly higher grade than a nurse endoscopist not working in screening, to get that incentive to move into screening.

Exactly, yes. And of course—can I, Chair? The other side is to reassure the public too, because we all know how attached they become to doctors, and there's a disparity in their thinking. So, there are two sides.

Thank you, Joyce. Can I just ask you to talk to capacity in the cervical screening programme, in terms of capacity in colposcopy—have I said it correctly?

Yes. It's difficult to have both 'colonoscopy' and 'colposcopy' in the same sentence. [Laughter.] The colposcopy capacity is a completely different department within the health boards, different teams that we're working with. We don't have any major concerns on capacity within colposcopy. We're working closely with a couple of the health boards around timeliness, but that's improving.

I'm asking about the cervical screening programme, though, specifically—capacity in the screening programme.

The model for cervical screening is that women and people with a cervix are invited for smears. Their sample is sent to the same laboratory, but a different team. We check for HPV, whether it's positive or negative. If it's HPV positive, we look at the cells and then if appropriate, we'll refer to colposcopy. The timeliness of the sample being looked at by a laboratory is really good, so they get their results really promptly, and then the referral onto colposcopy. The colposcopy services carried on throughout the pandemic and there aren't any major concerns in the timeliness or the capacity across Wales currently.

Okay. And then on the cervical screening programme, is there from your perspective any room for change or improvement?

Cervical screening, if you look to the future, will be changing, and how that will change will be something that we'll look to the UK NSC to be advising us on. Last year, we implemented the UK NSC recommendations that if you're HPV negative then you could be invited within five years rather than three years, and Scotland have implemented that as well.

But also, as our population changes—so you'll know that HPV vaccination has been in place now for our women and younger women—we expect the prevalence of HPV positivity to be reducing. We'll look to the UK NSC to advise us on how the cervical screening should align with that change in prevalence. And then we're also working with England, because England are looking to validate a self-sampling method for cervical screening. Once that's validated, we'll see how we can apply that in our programme. Probably, we'll look at that for non-responders first, to see if that's a way that people will engage with the programme.

The focus on cervical is about uptake, and again, that variation on different groups. So, those are the two main things that we're looking at in the future in cervical screening, because we expect it to be amending and changing in line with the recommendations.

Okay. Jack.

Thank you, Chair. When you're amending and changing these regulations when the science tells you it's the right thing to do—I have no arguments against that—it's crucial that the public are aware and on side through awareness raising, but also through the journey of changing. I think it was only 13 months ago when we saw pretty disastrous health messaging. So, through that journey, I'm hoping lessons have been learned and there are steps in place where the public are aware of what's going on, because this is a serious matter for them. I just want to make sure that is the case and that we don't see a repeat of what we saw.

Absolutely. You're completely right. Lessons are learned, definitely, and we're working across the UK, actually, to share those lessons, as well. That's something that we were very open around. So, with cervical, last summer, we ran a communication campaign. I think we wrote to everybody to explain that, as well, and that was perceived really well. What was interesting in cervical and the complaints and the questions that we had around it was there was a lack of understanding of what the HPV screening bit was. So, that was clear. Our understanding of what people understood by screening—. We had to go back to basics, really, and make those key messages. We focused that communication campaign on specific targeted groups as well, so that we had that general improvement. Obviously, there was a lot of feedback and concern this time last year. It didn't persist. So, we don't have continual complaints or concerns raised. That campaign that we did in the summer, we hope, has addressed it.

Gareth Davies.

Thank you, Chair. You've covered mostly what I wanted to ask around your relationship with health boards during the pandemic, so just a couple of technical questions, if I may. Does the National Institute for Health and Care Excellence guidance go far enough to capture everybody that's needed? Because the NICE guidance stipulates that people over 40, 50 or 60 should get tested. That says to me as a layman, 'What about younger people? What about people in their twenties, thirties?' I know the evidence suggests that the older you get, the more prone you are to bowel cancer. So, on that FIT, is anybody slipping through the net who are of a younger age, essentially?

The aspect of the FIT that we offer across Wales is the ability of the test. It's not like the bowel screening programme where we're responsible from the beginning right through the pathway. Because we had the ability to do the FITs—it's the same machine, different cut-off—we thought, actually, this is an opportunity where we can improve and help the system across the pathway. So, it's the test bit of it. We're just offering the test in line with the guidance, so the NICE guidance is there. But also, there are clinical pathways in Wales that have been advertised. I think it's going out in a health circular as well in terms of the FIT pathway that we're endorsing in Wales. We will provide the testing for that. So, you're right, this is a different process, because this is a pathway that we can offer people who come in with symptoms. We just have to follow the guidance, but evaluate it and understand what that is and how it performs in Wales as well. 

And what's the most effective way of testing, then? Because, obviously, you can do full blood counts and biochemistries and everything, but what's the most effective way to capture that? Is it through physical examinations, or is it blood testing and other things as well? What's the most effective way?

I think this is a pathway. This is, again, doing a 'route to' in our communities, a faster a route to getting to endoscopy. The FIT symptomatic is an indicator, it's not the only thing. In symptomatic people, you have to take their whole symptoms. They've got a lot more information than, 'We are offering something to asymptomatic, we'll offer it to everybody.' So, I think the FIT is an important test result within that clinical assessment, and it just informs the appropriateness of that person going for a colonoscopy. So, it's taking out people that don't come over the thresholds, and, actually, consideration where they don't need to go to colonoscopy. It's a sieving again of that symptomatic population into that colonoscopy, but it's one tool in the kit that the GPs and secondary care have.

And of people who do have polyps, are they being removed at that time, or are they then being rebooked in to get them removed a few weeks down the line or a few months down the line? Are they being tackled at that point when they're found? 

So, for the screening, they will be removed, if they can be removed, at that colonoscopy. But we've also got—. Again, for screening, we've got quite clear guidance of, if a polyp is seen and it's a complex polyp and it's a large polyp, we've also got a pathway of that being discussed at a national referral, and actually then a decision is made on how you tackle that. So, if it's a small polyp, at the time; but, if it's more complicated, there is a delay, because you have to think about how you're going to proceed with that for the person. So, that would mean a comeback for that, but in a very risk-assessed, clear clinical way. 

Yes. I asked in the first session we had, and the previous witnesses, about the diagnosis of Lyme syndrome and—. Sorry, Lynch syndrome. I'm so sorry. I got a bit mixed up then. Sorry, Lynch syndrome. I saw you looked a bit puzzled there. That's my fault, sorry. [Laughter.]

No, that's fine.

So, on the Lynch syndrome, do you think it's being captured early on enough? Because, obviously—. It's 25, I think, if people may have the gene or are suspected to have the gene, and then maybe later on than that if they're deemed to be of a lower risk. Do you think that's the right sort of age profile in order to capture those people into the system, or do you think it should be maybe a little bit earlier, that they should be capturing maybe late teens, early 20s, where that can be analysed at an early point anyway?  

So, the Lynch syndrome—it's a higher risk population, isn't it, of developing a bowel cancer, and I don't have—. Sorry, I don't have the details in terms of the evidence base, but it would just have to be based on that evidence base and when it's appropriate to bring people back. And although it's a higher risk, again, as in screening, it's that balance of benefit and harm, so what's the evidence base on the age ranges. So, we just have to go in line with that across Wales, and that's not part of the screening programme. I know, in England, that's something they're asking for the bowel screening programme in England to pick up, and the advantage of that for them, for England, is because then they would be going to an accredited colonoscopist, so the quality of that colonoscopy is really assured. And I think that, again, with the screening bit, because it's asymptomatic, you're going to be picking up smaller, earlier stage polyps, so it's that quality I think is their advantage. But it's not part of the bowel screening programme, but the national endoscopy programme is picking that up, in terms of how that should be done in Wales. 

I think some of issues around Lynch are that so many people don't know they've got Lynch. So, I think, speaking to colleagues in England, their concern is that the people they are screening are probably just the minority of people with Lynch, so it's got potential to really build the numbers in endoscopy quite quickly, once they start Lynch testing. I think they estimate something like—don't quote me on this—but it might be only 20 per cent of the people that have got Lynch, so it's a minority of people they know of at the moment. So, that's the real concern, I think, in endoscopy, that, once you do start screening for Lynch, the numbers could really climb quite quickly. 

Thank you, Gareth. In terms of our work on endoscopy services, you're the professionals and we're trying to understand the issues in order to make recommendations to the Government to improve endoscopy services. So, is there a question or questions that you think we should have asked you today? What are the key messages and priorities that you would like to pass on to us as a committee as we do our work? 

I think we've covered it, but I think the bit for us is workforce. So, it's that pipeline of screening colonoscopists and clinical colonoscopists, and you have to be doing the preparation today to, in the future, be going, 'So glad we did that, looking back, because actually we've got this workforce.' So, I think, it's the training of the workforce, and that is the ability for clinical staff to be able to do that training and get those number of colonoscopies up so we've got the workforce there. Because having a physical building is one thing, and that's a struggle, but, actually, workforce is the main bit. So, developing that pipeline for us—so that's for the colonoscopy and then the screening colonoscopy—

How do we do that? I know it's a kind of obvious question, but just to draw it out.

Well, I think the national endoscopy programme board has got plans in terms of that education aspect, so that's probably the plan that we need to be doing. So, it is that aspect of developing the workforce, and it is things like the pay scales, the attractiveness and the awareness of it, so that, actually, people know what they can be achieving, but that time—time to train and time to have experience of those procedures, because everybody is under capacity, is one thing. So, that pipeline.

And then the other bit is that capacity and how we develop a system in Wales that is resilient and has capacity. Because we've talked about that we're working with all of the health boards, and there'll be one issue here and one issue there, but we don't have flexibility across the health boards or a more regional approach, so—

And how do you achieve that?

Well, again, I think that isn't within our gift to achieve, but it's actually—. It's breaking—

In whose gift is it to achieve?

Well, it's the system of it, isn't it? So, it's actually what is our system of delivery across Wales. Again, the national endoscopy programme has got plans around that. We're not moving to that planned capacity with resilience and flexibility. We're still quite reliant on insourcing and temporary measures in Wales.

So, what needs to happen?

Well, we need to develop the plan, and I think that the national endoscopy programme has got a plan, but we're not advancing with that, in terms of having a system with more capacity in Wales.

I think it's fair to say, and it was quite evident after the pandemic, that we're very silo based in Wales. As Sharon said, an acute problem in one health board, like we've got now, and there's nowhere else we can go to move those patients, because everybody's working their own patient groups and they've all got waiting lists. We just haven't got that resilience across the system. So, when there's a pinch-point, we just have to accept there's a pinch-point and try to work with the health boards. So, if we could have a more joined-up, dare I say regional, type approach, where we can move patients and we're not reliant on one or two individuals being able to provide procedures for us—. And, obviously, we can see the potential of the age expansion, and the health boards do get it—I'm sure they do—and it'd be just a shame if we couldn't deliver because endoscopy capacity is—. It will have huge benefits for the population of Wales, it really will.

Yes, workforce capacity.

Yes.

Lovely, thank you. That was a really helpful session this morning—really helpful to gain an understanding and a very informative session, so, really, thank you very much for your time this morning. Diolch yn fawr iawn.

Diolch yn fawr.

Thank you.

That brings our public session to an end. We'll be back in public at 1 o'clock.

Welcome back to Health and Social Care Committee. I move to item 4 in regards to our inquiry on endoscopy services, and we have two witnesses before us for this last session today. I'd be grateful if both could introduce themselves, but if I ask Professor Dolwani to go first.

Thank you. I'm Sunil Dolwani, professor of gastroenterology at Cardiff University, consultant gastroenterologist in Cardiff and Vale, and one of the clinical leads for pathways in the national endoscopy programme. 

Thank you. And Professor Crosby.

Yes, so, my name's Tom Crosby, I'm an oncologist in Velindre by trade, but I'm clinical director for cancer services in Wales. 

Thank you, both, for being with us today. We appreciate you're both very busy people, so thank you for spending the time to come to committee this afternoon. Perhaps I could ask, perhaps more to Professor Crosby, I think, really: what are the key findings in regard to the Wales cancer network's work with Macmillan on the cancer patient experience survey? It might be helpful if you set out some key findings to set the context for today.

Yes, that's absolutely fine. I wasn't really ready to present the detail of that, so—

Don't worry about detail. Just the top, key findings is fine, honestly.

That's absolutely fine. The broad finding is that the experience of patients coming through the cancer pathways and system still remains excellent. So, 92 per cent of patients rated their care either very good or excellent, and I think whenever we have the opportunity we need to reflect that back to the working staff at the moment, who are under a lot of pressure to deliver that excellence in terms of the quality of care. There are always some elements of the pathway that we need to look at and understand where we're not doing as well as we want to and where there are variations as well. So, some of those are patients are being allocated key workers or specialist nurses much more than they were in previous experience surveys, which is really good, but they say they're not receiving detailed care plans. We have made some improvement in terms of access to financial advice, which in terms of holistic support is really important, but it's not where we want it to be. And one of the elements of support is that access to clinical trials and research is not where we want it to be. I think it was down at about 20 per cent in terms of patients who'd been approached about clinical trials. That was off the top of my head, so—

No, no, that's all we wanted. 

I'm happy to go on to any specific questions if people have picked up other elements of it that I'll come back to. 

Yes. Other Members may want to during the course of the session, but from your perspective, what work is being done to improve the early support for patients at the start of the cancer pathway? 

So, it will be a recurrent thing that we talk about this afternoon in that we have a single career pathway, and that single cancer pathway broadly defines what should happen to a patient after they're suspected of having cancer, or if they go into the screening programme and they're found to have a positive test, which then brings them also into the diagnostic and treatment pathway. So, we've described what should happen to a patient, not just in terms of the timeliness of tests, investigations and, ultimately, treatment, but also the support they get at the right time when they should have the support of a key worker when they have a holistic needs assessments, when they have a care plan delivered. 

What I would also say, in terms of a challenge, and what patients have told us—. Sorry, in the patient experience survey, I should have also said that some of the feedback we have is delays in coming to the system—we have received that. We have been told by patients that they struggle to come through primary and community care, get the referral that they need to be diagnosed, et cetera. So, that is what we have had some feedback about. 

And I think part of the challenge in terms of patient support is at that very point of support for them, because, as we know, 95 per cent of them maybe won't have cancer. But as primary care refer patients in, and the system doesn't yet know that they're likely to have cancer, there's a bit of a gap there in terms of how we support patients at that critical time. And what we've always heard from patients is that those transition points between primary and secondary care, secondary and tertiary care, tertiary care back to supported care and primary care et cetera, those are where patients sometimes feel that there isn't as much continuity as they would like. 

Okay. Thank you, Professor Crosby. Perhaps if I ask Professor Dolwani to come in certainly on anything that's been—. If you want to comment on anything that's been said already, but particularly with regard to issues that have been raised with us about a variation of services being available between different health boards across Wales. There have been some examples of some health boards performing particularly well and others not so well in terms of endoscopy services. I suppose it's asking what work is being done to understand why that is, and address the variations.  

Thank you. That's an important point, and in order to actually address that, we've done a lot of work to, at first, understand it and then try and tailor the solution to where the bottlenecks seem to be. And this is not a single formulaic thing that we can do to say, 'Let's do x or y', and that variation will immediately get standardised; it is, in itself, very multifactorial. If I was to look at themes that emerge that contribute to that, they're the same themes that contribute to how successful or not we've been able to achieve our goals in the national endoscopy programme.

I think it's fair to say that part of the frustration and the reason why the variation has been slow to actually get more standardised is because of the differences in the way that health boards interact with central organisations, and the health boards interact with each other. And that is a cultural issue that needs to be addressed, because if there is evidence-based guidance that suggests that a certain intervention ought to be considered or undertaken, then that should be followed. If there is a problem with implementation, then what we've tried to do is understand what is the problem with implementation, and it is very different in different health boards. 

In some of them—. And these things, you will come across, whether you're talking about joint advisory group accreditation or anything else. In some health boards, it is a question of infrastructure. The actual units are in such poor shape that they just physically do not have the capacity to undertake some of those interventions. In others, it is a question of workforce, in others still, it is a question of things always being done a certain way and not necessarily being standardised according to what we suggest in national guidelines. And part of that frustration for us has been that, if we are truly a nationally directed programme, then that implementation should be seamless between centre and health boards, and that hasn't been the case. So, I think there is an issue there to be addressed in how health boards actually work and why they should be so different when the evidence is the same. And, indeed, how they interact with us at the centre.

Yes. As you were speaking, I wrote down the points: infrastructure, workforce, culture, management—these are the differences in issues. Have I missed anything off my list there?

I would perhaps just add a couple more: one is the pace of decision making, and that pace of decision making all through has been something that has been very difficult for us. In 2018, when the previous iteration of this inquiry was held, and in April 2019, when we had a big workshop, we highlighted all of these issues. We worked incredibly hard to actually get that understanding translated into what needs to be done. And here we are in 2023, and the pace of change has been incredibly slow. It's not that the solutions have changed, despite the pandemic, the solutions needed to be accelerated, but the pace of decision making has been very slow at every level, and that hasn't been supportive of us.

Why is that, do you think?

Again, part of it is, I suspect, cultural, and part of it is, I would suggest, too cautious a way of making those decisions. Where evidence has been presented, it is robust evidence, it is not just someone's opinion, and yet there is still, for some reason, hesitancy in saying, 'Yes, this is clinically led, this is clinically agreed, there is consensus on what evidence says, this has been looked at, and now, let's support you'. I think that has just been too slow.

And, it might be an obvious question, but, in a sentence, what needs to happen?

I think we need to have support to make the changes that we know need to be made. The problem is not at all that we don't know what needs to happen or how it needs to happen; the problem is that the investment in the things that need to happen is not being made. And the change to accountability structures that health boards need to make happen, so that whatever we suggest is the correct way, evidence-based, sensible way that we need to reduce that variation and move forward, that needs to happen. There should not be any element where a health board says, 'Oh, this is going to be different here because we're different'. The whole world is saying that this evidence suggests that this is what we ought to do. A good example of this is the stool FIT test. We worked incredibly hard, and in a very evidence-based manner, to involve everybody in adopting that: education, training, getting everybody to give us their input into how it needs to be done. And yet, there is a health board that continues to say, 'Well, we don't trust our primary care colleagues with the FIT test, we want to do it the way we'd like to do it, the old-fashioned way'. That just should not be allowed.

And is the endoscopy action plan going to address some of the issues that you've just outlined? And I suppose, just quickly as well, the action plan—'the speed of diagnostic testing and reporting to eight weeks by spring 2024' is what I just read in my notes here—is that achievable?

So, the key question here is: who is supposed to do that? The national endoscopy programme, as it currently stands, is not a delivery organisation. We're actually a co-ordinating organisation that tries to get everybody to achieve best practice. To get the teeth we need to actually implement this, it goes back to exactly what I was saying earlier: the health boards are supposed to implement this. If the health boards are not accountable in a way that is different to what is currently the case, I'm not sure if it is achievable. If they are, then we can all do our best, as we are, to try and make that happen, and then it will be achievable.

And whose job is it to make sure that the health boards—?

The executive.

Who's the executive?

The executive consists of various components, as I'm sure you're aware, better than me, but we are one part of a vehicle where we do our best to try and help support colleagues for implementation, but we actually cannot make any decisions on that.

Thank you. I can see that Jack wants to come in, and I can see Professor Crosby wanted to come in as well. Let me ask Jack to come in, and then I'll bring you in, Professor Crosby.

Thank you, Chair. Just following on from your last question to the professor then, does the Minister need to take more of a role in this?

I'm not sure who is involved in that decision making as things are. We report to the national endoscopy programme board, and the national endoscopy programme board, I believe, reports to the Minister through the mechanisms. Wherever the delays are in decision making, I'm not party to where the delay is, but wherever they are, they need to be resolved.

Thank you.

That's helpful. Professor Crosby, you wanted to come in. Just briefly, because I just want to make sure that we get through all our questions. But, you wanted to come in on response to— [Inaudible.].

Yes. I think this point is cutting to the chase a little bit—

I absolutely agree.

—in terms of not just what we need to do, but how we do it, and around system leaders, leadership and governance. So, we've known that the national endoscopy programme was meant to be a directed programme, so we said, 'We need to do things differently. We need to take control of the system', and that was going to be Welsh Government led. They had a programme, it was funded, they had some very good ideas about regional services and training programmes, and ultimately the health board said, 'Well, we're going to do things our way', and now, two or three years on from that, we have now come back to the diagnostics programme. The diagnostics programme will oversee endoscopy as well as imaging and pathology and other services, et cetera, but they will now be absorbed into the NHS executive. And I would say to this committee that we just need to be very clear that that NHS executive has the authority to actually make things happen, because I don't think we have plans in place locally that will meet the capacity that we have predicted that we need.

That's very helpful. Thank you, Professor Crosby. Rhun ap Iorwerth.

It certainly is very, very helpful. That is key, I think, for the new NHS executive, and I'm certainly pleased to hear that being said so clearly today. Let's just look at capacity. First of all, do we know how much demand there will be in addition to current demand due to the increased demand placed—I'm looking for the words here—for the screening programme? We will hopefully be reaching more people through the screening programme. That will put more demand on endoscopy. Can we deal with that, and where are the pinch-points?

Professor Dolwani.

Thank you. A really good question. Yes, we do. In fact, we do, to a very high degree of accuracy. Over the last few years, prior to the expansion of age, we had already started looking at modelling, getting international experts in to give us comments on the data, looking at the age demographic of Wales, people as we expanded down from 60 to 58, currently to 55, and then planned down to 50. As we lowered the threshold down planned towards 80 from the current 150, we looked at each step of that. We also looked at what each step would involve in terms of capacity, and that's why the programme actually was planned in a phased manner, so that it didn't suddenly overwhelm the existing capacity. We also looked at, 'What if we did things differently? What if we did what there was an understandable climate for—why don't we reduce the threshold down immediately to what Scotland have or what another country has?'. And we looked at how many lives we would save if we did it with plan A versus plan B, phasing it in one way versus another way. So, the decisions that have been made have been very robustly evidence-based.

Do we have current capacity to deal with that? No, we don't. We had plans that we had put forward at the time of the previous inquiry and subsequently, and as soon as the planning began for age expansion and screening—and, again, the frustration for us has been—. I'll give you an example for this. We all know the very difficult situation with the workforce in the NHS. We all know that we can't keep magicking up consultants who are fully trained to that high degree, the highest level of skill that the screening programme needs. We've tried to blur into professional boundaries, get our nurse endoscopists skilled up, trained up, to the level where we can actually start growing that workforce. And we're very far behind other UK nations in that. And yet the frustration has been that, again, HR policies in each health board seem to differ. So, if one health board says, 'We cannot give a particular band to this particular nurse endoscopist', who's at the same level of competency and skill as any other consultant screening colonoscopist, that actually causes attrition rather than actually recruitment of more people into our workforce. People feel devalued. They go on to either a different health board, or they go to England. So, it's not that the capacity plans aren't there. The capacity plans are good. We've been working incredibly hard at weekends to train people. They've been coming out to do additional lists to get their skill level up, so that that workforce capacity can increase. But when they go back, after accreditation, to the health board, they haven't got enough lists to do that screening, because those lists are earmarked for an insourcing company to come and do some routine waiters, because that looks worse on the targets. It is a very complex issue, but we have to prioritise areas like screening, as you've said, so that the capacity plans that can work are enabled to work.

That's a very comprehensive and useful answer. I don't know if, Professor Crosby, you have some comments to make on that. It doesn't feel as if it's cash—although I'm sure more cash would be welcome—but it's a systems problem that's blocking the expansion of capacity. 

Yes, I think that's right. I think we've got to acknowledge that there are pressures everywhere at the moment in terms of post pandemic and backlog, and it's not just Wales, it's across the UK, and we're all struggling to say how will we meet that demand. So, we're not alone. But we also do need to recognise the issues were there pre pandemic, in terms of demand was rising at 10 per cent a year and we weren't performing very well then. So, definitely, it's exacerbated the problem. 

But, yes. So, we know that capacity is the problem. We do have good demand and capacity data to say what we need. We do have good quality improvement systems in JAG, which we'll probably come on to, and we do have really good pathways in the single cancer pathway and optimal pathways. So, we really know what we need to do. But it is about getting those things over the line and delivering them, and delivering them equitably across all health boards, and understanding how we do that. So, it's implementation that's the problem, not having more plans and strategies. We really do know what we need to do. 

And it's also then saying, 'We not only need to meet today's performance targets; we do need to be training enough people for tomorrow.' If we only meet today's targets, we're never going to have a resilient and sustainable structure for delivery of endoscopy services. So, it may be that, right now, it's just it's so much pressure, but, at some stage, in the very near future, we need to be developing not just waiting list initiatives, not just insourcing and outsourcing—we need to be training the right number of people to deliver a sustainable future. 

And I think, as Professor Dolwani has said, it's also freeing up the people we have trained, either as non-medical endoscopists or gastroenterologists, to be the free to do the diagnostic tests we're able to do, because we're pulling them into front line and acute medicine et cetera, so they're not free to deliver the capacity that we would want them to, and they would want to do. So, I think that's important. 

Yes, and 'resilience' and 'sustainability' are words that have come up here. Back to you, Professor Dolwani. Specifically on the issue of insourcing and outsourcing that you mentioned, those are measures that have been brought in as crisis measures, essentially, just to try to get through as many people as possible. We can't stick with that model; we have to move towards a more sustainable model. How do we do that? How much of a problem is it to become overdependent, if you like, on that insourcing and outsourcing? 

It's a very good question. It's an absolutely massive problem. I think, as with most things—and just to use something colloquial—follow the money. The amount that has been spent on insourcing and outsourcing from private companies is staggering—it is absolutely staggering. You have to ask yourself: if instead of this panic mode, crisis mode, immediate 'something must be done' situation, had that same investment been made in the workforce, in a way that they would have felt motivated and valued, what could that have achieved? And it is really important that we think about that, because we've had a long time of this immediate, short-term target-driven thing of, 'Let's get some private company in,' and, at the same time, the absolutely ludicrous situation that our own colleagues have to go to an agency to go and work in a health board down the road, and can't work in their own health board because that's not allowed in the rules. Essentially you are, without meaning to, driving them away from their own pride of work that they have in their own service. That is just bad all around. There's just no advantage to it, other than some figures looking a little bit better because some company has come in and got all the resource for that. And I think—

I was going to ask a question around whether we have the data and the know-how about how productive our endoscopy units currently are. But, given the scale of insourcing and outsourcing, are we able to measure meaningfully the capacity and the productivity of our own in-built endoscopy units?

To a high degree of accuracy, yes, because there are productivity tools that the British Society of Gastroenterology and JAG have developed, and we use all those. It's fair to say that our productivity isn't optimal and it could be improved, but it's also important to see why. The pandemic has absolutely had a shattering impact on colleagues and morale, and I think the important thing people sometimes forget is, yes, we're not in a good position, but the position we're in is amazing considering how poor it could have been with all the pressures that we're under at the moment. So, yes, in answer to your question, we do have very good data on productivity, demand, capacity, and that's real-time data that we look at, not just static data that we work on.

Does the data suggest a way forward on how, then, to improve capacity further, to increase productivity and so on?

Very much so, and it involves a number of steps that would probably take too long to go into, but, yes, it is all data driven, absolutely.

And I guess, given that, a few minutes ago, you said, 'We had the plans,' I guess those plans would be based on that kind of data.

Very much so, yes.

And a last question from me, perhaps, on the use of technology in particular, and to both of you there. We are looking at new methods of doing what used to be far more difficult in the past—the injection of little capsules into colons and that kind of thing. Where are we on the use of technology? We've heard this morning that perhaps we're behind where we could be, behind some other parts of the UK, but just give us an overview of where the main challenges are in the roll-out of technology and investment in technology. Perhaps Tom Crosby, or—

Sure. I think it's fair to say that there are a number of areas where technology can help us, and there is no doubt that we should be really keen to adopt the technology in those areas. What's also important is that we are not going down a path where we think that is the silver bullet, that's the solution to all problems, because it isn't. There are some areas where these technological advances will definitely help us—colon capsules; there are some areas in upper GI endoscopy that have been piloted by other colleagues, like perhaps transnasal endoscopy. But these are small, and the scale to which they can help is still relatively modest, for various reasons, and there are good reasons why they haven't been able to scale up more rapidly. So, it's important that we adopt all new technology, we test it out, we try and see where and how much we can scale them up. Currently, we're actually trying to collaborate with colleagues across England, Scotland and ourselves, to see how some of these can be done more quickly, so that we learn from each other and we try and do things in a way where we're actually not compromising on quality but still getting better outcomes. The nub of it still remains the capacity issue, and technology will help us to some extent, but not to the extent where we will not require that capacity. We've also tried to model through the data the best case scenarios, for example, of if certain things were used, certain technologies were used, how much that would help. And it's fair to say again what I said earlier: it will help to some extent, but we still require the basic core capacity.

Professor Crosby.

I think Professor Dolwani is right. I think we mustn't overestimate. Innovation is probably 10 per cent of what we need in terms of capacity et cetera; the core is the basic capacity. And we also need the capacity to introduce the innovations. We need the leadership to be able to do that. And if you haven't got time in your job plan to do that, it's a challenge. I think he should be commended on his work with colon capsule endoscopy, which I think is going well across Wales. 

But I think we have been a bit behind the curve in Wales in terms of innovations. I think we have seen in England and Scotland—. Necessity is the mother of invention, isn't it—saying, 'What's coming around the corner? Is there something about reducing the thresholds and just testing something while patients are waiting a long time, sometimes many years, for more routine tests?' And I think the issue around transnasal endoscopy and cytosponge are good points in hand. They're definitely not going to cure the problem, we're completely clear about that, but it's also a bit of a no-brainer that we should be doing that, to encourage systems to change, to innovate, to work differently. So, transnasal endoscopy is much better—. Well, it's more easily tolerated by patients, it's acceptable as a screening tool, it doesn't take endoscopy suites, it doesn't take as many endoscopy staff, and it's just a bit of a no-brainer to do, even though it's not going to sort the whole system. So, Cwm Taf have introduced it, Moondance have piloted that, and we're going to have a workshop to see if we can roll that out across Wales. And there is lots of enthusiasm about that, and 'Let's share the businesses cases just to make that happen.' 

Cytosponge is a bit different. It's generally going to be a tool that's ultimately, in the future, going to come into primary care to rule patients in who have persistent reflux symptoms, who've been on anti-acids for a long time, and we may be able to do that test in primary and community care to rule them in. Now, that's a bit of a challenge at the moment with our current capacity problems, but it is also being used in Scotland as a useful tool to look at patients who are being followed up for pre-invasive cancers, whilst they're waiting, with some good evidence that it's beneficial in that area, and also for those patients with low-risk symptoms while they're waiting to maybe triage those and bring them forward if they have worrying signs. Just to say, in north Wales, they're piloting cytosponge. It's only starting in the next few—well, either the next few days or the last few days. So, that's really exciting, and we'll learn from that experience.

But there's something about saying we do need to work a little bit differently with these technologies. And I think it's a little bit more than the problem it'll solve. It's saying that Wales is open to welcoming these new innovations. 

Thanks. Thank you, Cadeirydd. 

Thank you, Rhun. Sarah Murphy.

Thank you, Chair, and thank you both for being here today. I'm actually going to ask a couple more questions about the workforce, as this has been raised throughout today, actually, throughout the panels, as being one of the key issues. So, what has been raised in previous sessions is that there's no data about the workforce and then that makes it very difficult, then, to know what's going on and, I suppose, how to plan for the future. So, can I just ask what are your views on having enough data, or having any data, on the workforce and how that could help things? And if that was to be changed and the data were to be collected, what do you think would be helpful?

Thank you. It's a very interesting question. I think it depends on which part of the workforce you're alluding to. If it is the endoscopy workforce, we have fairly good data on the numbers of people who are endoscopists, endoscopy nurses. We have good data on the numbers of procedures that are carried out, the types of procedures that are carried out and which workforce can be mapped to which procedures—so, the skill mix that's required for procedures within rooms, staffing ratios. We have fairly good data, and that is part of every unit preparing for their JAG accreditation as well. And that's the basis on which we try and model the number of sessions required, the number of people we have currently and how that might or might not fit into their job plans. I wouldn't say we have perfect data, but we do have good enough data to be able to model the plans, going forward.

Okay. Thank you. Professor Crosby.

Do you mind if I ask a question on workforce, before you move on, Sarah? The data you referred to, on the workforce, is that publicly available somewhere? Because we've had difficulty trying to establish that information.

I'm not sure about publicly available, but it is not difficult to obtain, because each health board will have that data. We hold some of that data in the national endoscopy programme and Health Education and Improvement Wales colleagues would have some of that data as well.

Do Welsh Government have that data collectively, I wonder? 

I don't think I can answer that, but that data is there.

Thank you for that. Sorry, Sarah, to interrupt, I just wanted to get that clear before you moved on to your next question. Thank you.

Thank you, Chair.

Did you have any further questions?

Yes, sorry. I had a further question about your views on whether an endoscopy academy training model could provide optimal delivery of endoscopy training pathways, as put forward by the all-Wales education and training management group.

Thank you. Yes, it could. Again, a really big source of frustration is that just over two years ago, as president of WAGE, I was with the other presidents of the gastroenterology societies and the British Society of Gastroenterology talking about our plans and mentioning how we had really ambitious plans for training academies, for service academies, for accelerating training pathways, and my colleagues from other nations were actually really struck by how much we'd thought this forward. In 2023, they've all moved forward with the plans that we had outlined at the time, but we're still very slow. It brings me back to the pace of implementation and the pace of change that's required. But absolutely, we need a different model that works around people's availability, their well-being and also making the most of technology and every other way that we can to try and accelerate training.

Thank you very much. Professor Crosby, did you want to come in and add anything on a potential academy?

I fully support it. I think it's the way forward, both in terms of what's been outlined by HEIW and also seeing that the current system is probably supporting inequities in terms of access to training et cetera across different organisations. What we saw with the imaging academy was something about 'just to do it for Wales'—it really worked. That was a badge of honour for Wales and I think, both for endoscopy and potentially for pathology, it is absolutely the way forward. We've had those conversations with HEIW. I'm a bit surprised that it—. I honestly don't think it's a data issue. If the Welsh Government haven't seen it—. It has been a directed programme for a little while, so, it is available. We know what the demand is, we know what the capacity we need to deliver that demand is. But at the moment, there's a capacity issue in training the right number of people we need to meet that demand. We always want better data and intelligence, but I have to say that, in this case, I'm not sure that's the key issue.

That's very helpful and very interesting. Thank you both very much. Thank you, Chair.

Thank you. We've got about 22 minutes left and I've got questions from Joyce and then Gareth and then Jack. So, that's about seven minutes each. So, just to the witnesses, just to keep that in mind, if you can—I hate to ask this—and keep your answers brief so that we can get through all the questions. Thank you. Joyce Watson.

Good afternoon. You talked earlier on about health boards having their own individual systems for employing people. I want to ask about the health boards agreeing a standardised referral pathway to endoscopy. Is that happening?

Yes, it is. We've just, after a lot of work, agreed an all-Wales endoscopy referral form, and there, unfortunately, the bottleneck is different—it's with Digital Health and Care Wales colleagues so that that can be implemented. It's achieved consensus, it's got green lights from us, and it's standardised that it should be used across Wales. So, yes, it is.

We've had, and you've mentioned it very briefly, some reports about the variations, but also about using FIT in primary care for symptoms, especially the low-risk patients. We hear also that Hywel Dda health board are on track to have that in place by March 2023—that's this year, actually. What is causing that?

I think it is what I mentioned earlier. I wouldn't want to labour the point, but their implementation is very different to the implementation in other health boards. It is not actually truly primary care embedded or led; it is still very much secondary care led, and that is not how it should be.

And is that because they want to keep it in primary care but they don't trust the system? Or could I rephrase that?

I think Professor Crosby wanted to come in as well.

I might agree with that, but it would be presumptuous of me to say that that is the case; it may well be.

I think it's an important point. I watched the evidence session with Bowel Screening Wales this morning, and I think they touched on it there. This is very different. Professor Dolwani and the endoscopy programmes have said what we needed to do about FIT in symptomatic cancer, but then very helpfully, there was guidance nationally that came from the British Society of Gastroenterology and the Association of Coloproctology, and we have implemented that, or at least we have amended our optimum pathways to adopt the recommendation that FIT is undertaken in primary care prior to referral into secondary care. Prior to that, FITs were happening across Wales, but they were happening at different parts in the pathway, and patients weren't sure whether they needed them before referral or afterwards. So, there is absolute clarity now about what should happen. It's gone through the cancer network board; we've had a Welsh health circular to support that as a direction of travel.

I think, to be fair, and to be fair to Hywel Dda, the change in practice to adopt a new test in primary care before referral is challenging. We have given them some funding to accelerate their project in Hywel Dda. Otherwise, we are now clear that health boards need to negotiate with primary care teams to say how do they actually achieve that. But we're very clear what should be done, and there is clarity around that. I think it would be hugely advantageous if we can implement that across Wales. But other countries haven't implemented further; we're clear about what should happen. We're doing that for every potential patient that comes through.

Just to come back to the question previously, there are two issues, one where you think patients have got cancer and we're asking them to do a test so that secondary care can then do the right next test for them, be it a colonoscopy, be it a CT, be it assessment or just say they don't need anything. There's also something about where there's low risk but not no risk, where they might want to rule it in, where you do a test, and it comes back as positive, and that will lead to a referral. So, they're two slightly different scenarios and both very different to Bowel Screening Wales, which you discussed this morning. So, I think we do have clarity on what we need to do, and we are helping the system to deliver that. We will be working with the system through the cancer improvement plan to make sure that that happens. 

Jack, did you want to come in on that point?

Yes, very briefly, Chair. Just on the bottleneck you mentioned, Professor, that was for the standardised referral, and that bottleneck is with Digital Health and Care Wales. Am I right in saying that?

Yes, it is.

Do you know what that bottleneck is?

Yes, we do. Every time there is a change to be made, or new programming to be done on a system that is all-Wales, it has to go through our colleagues in Digital Health and Care Wales. They have, as we're told, a huge list of things that they need to deliver, and limited programming capacity. Just to put this in perspective, we wanted some changes in the bowel screening information management system 10 years ago, and that still hasn't happened.

Okay. That's very useful to know. Thanks.

Thank you. Gareth Davies.

Thank you, Chair, and good afternoon. I've mentioned a couple of times on previous panels today about Lynch syndrome, and about the improvement of surveillance. What can we do more to improve the surveillance of the syndrome and make sure that people don't slip through the net?

Thank you. That's a really good question. Lynch syndrome, as you're aware, is a very high-risk situation for people and their families where they can get bowel cancer and other cancers as well. The approach that England have taken—and it's interesting and important to know why—is that they've decided that all Lynch syndrome patient surveillance will now be undertaken by the bowel cancer screening programme from April this year. That's mainly because of the uncertainties surrounding how well these procedures are undertaken and in how timely a manner for this very high-risk group of patients. We've elected to do it differently, because the rationale here is, as we've discussed through the afternoon, not to overwhelm capacity in services, but to maintain quality. So, what we're doing is working with colleagues in the all-Wales medical genomics service and with colleagues across colorectal surgery and gastroenterology, to look at ways in which we can standardise management and also keep the quality for this very high-risk group of patients the same, not necessarily mandating that it is the screening programme that has to do this, but, actually, that any high-quality colonoscopist, be it a nurse, consultant, et cetera, who meets a certain set of standards, should be able to do that for these patients. We think that that is probably a good way to implement this without running into some of the issues that the English programme are very likely already running into. Because a lot of the reasons why these patients are seen in a highly intensive manner in their local units is because of their risk, and they have relationships with their local units on that. Sometimes, the way that is being done in England might involve them going to a different unit with which they are not familiar. That in itself, for these families and for their patients, may not necessarily be advantageous. I think we have to fully accept that we need to maintain or improve the quality of service provided to Lynch patients, undoubtedly. Whether that can only be done through the screening programme, I would question.

And do we have enough gene experts in place—genetics? Because, obviously, with the nature of it being a genetic condition, and it's a very specialised role, are there enough gene experts to meet that increased demand?

My colleagues in the all-Wales medical genetic service would probably be better placed to answer that, but my answer would be 'no'. What is happening, though, is the way we do things we are hoping to change. So, instead of the very laborious, very time-consuming way—. If somebody was suspected of having Lynch or polyposis, you'd write a letter to genetics, they would then send a family history questionnaire to the person, who would fill in the questionnaire, send it back, a little while later, a counsellor would contact them, talk about all that, then they'd have a blood test, all of which often took and still takes months. The way we're trying to change that and make it more responsive and quicker is—and we've written British Society of Gastroenterology guidelines on this of which I'm one of the co-authors—to move it right to the point where we first see those polyps. That involves a set of training of the nurses who might then come in, who might counsel the patient at the same time and do the blood test, so that the whole pathway is shortened and you get a diagnosis much quicker. That does mean a fair bit of education and training, and we're in discussions with our colleagues in genetics about that.

That's a good, descriptive response. But just—

Does Professor Crosby want to come in on any of the points?

Very briefly, just to say Wales has led the way in terms of saying that all patients with a suspected diagnosis of bowel cancer should be Lynch tested, and we should be proud of that, that we got it over the line. We need to make sure that every patient in Wales with bowel cancer is being tested, and there is a proposed audit for that at the moment. I defer to Professor Dolwani in terms of what happens to those patients in terms of surveillance, but I would also then come back and challenge a little bit to say I think the all-Wales medical genomics service is something we should be really proud of and support. They are leading the way in the UK in terms of testing and the support for patients in this part of the pathway. If anything, I think it's just making sure we are testing the patients at the right time.

That's really descriptive and really helpful. Thanks. Just to finalise, we've touched briefly on the JAG accreditation, what are the reluctance and the barriers around the accreditation that stop us achieving that accreditation, if you like? It seems a common theme from what we've heard as a committee today, that that's the goal, that's the ambition, to get accredited. So, what's in the way of that?

The answer would take us several hours, actually, and I'm mindful of the direction from the Chair, so I'll be very brief. You have a session coming up with my colleagues solely around JAG, and they will be able to answer that in a much more detailed manner. But succinctly, in terms of all the things that we've mentioned now, what is JAG? I think for people who don't understand JAG, it is a quality standard, which means everything from privacy and dignity, having enough toilets in the unit for people who are coming in to have their colonoscopy to having a timely pathway—all of that and more. And so, it involves every element that we've discussed: infrastructure, pathways, timeliness, data—all of that—and how you communicate with the patient, and each one of those we've looked at in detail. There are different elements of bottlenecks in different health boards, and the state of some of our estates is really poor and that makes it very difficult to get accreditation alongside other things.

Any comments from Dr Crosby? 

No, no, not on that, other than just to say that we have a quality accreditation system, so we just need to implement it. But one of the challenges to that is some of the length of our pathways, and I'm not sure if we're going to get another question on that, but we do have standards in place for optimum pathways. And we heard this morning from Bowel Screening Wales that they're really trying to go around the country between different health boards, with some achieving things quite well and some not. We're really clear: from when a patient is told they have suspected cancer, be it with a symptomatic cancer or a screened-detected cancer—. So those screen-detected cancers were previously fit and well, they've participated in a screening test and we then tell them that there might be something wrong with them. They should be seen, according to the single cancer pathway, in two to four weeks, and there's a 62-day challenge to both—well, a 28-day diagnosis pathway and a 62-day before they are treated, and the variation that we're seeing across Wales I would say is unacceptable. And one of the solutions to that is regional working to share the issues around workforce, facilities and configuration of the services, and pathology, for instance, so that we use what capacity we do have to ensure that there's equity of access and also efficiency of access of services. So, I just think that's an important point. 

Thank you very much. 

Thank you, Professor. Jack Sargeant. 

Diolch. Thank you, Chair. I'm just reading this statement from Tuesday from the Minister on the updated cancer implementation plan. I'm not sure if—we might be putting you on the spot here. Do you think that that plan will improve access and efficiency to endoscopy services in Wales? You may not have had the opportunity to read that in full. 

I have read it, thank you, only very quickly, and I would say just one thing: first and foremost, endoscopy services are not only related to cancer. We have a huge number of services within endoscopy. To try and equate the two completely is probably not very accurate. Of course, a big part of our service is about cancer and cancer diagnostics. We also have endoscopy services about therapeutics. We actually cure people of a lot of things. Inflammatory bowel disease is a really important thing that tends to get sidelined when we're talking of cancer alone. It's really important that we understand that endoscopy services are much wider than cancer.

Secondly, to say that people like—and I'm sorry if this sounds blunt—people like investments being made in cancer services. We all want that. We all want our cancer pathways and cancer outcomes to improve, but there isn't actually even a fraction of that level of investment in endoscopy services. So endoscopy services only being looked at as a way of improving the component for cancer pathways would probably not be doing it justice. Of course, it's a very important part of it, and it needs to be done, but it shouldn't be at the cost of other non-cancer pathways. We need comprehensive pathways that look at both, that actually address both, and so, I think that would probably be the most fair answer to your question that I can give. 

That's very good. I think the committee welcomes straightforward answers. I don't know if Professor Crosby has anything to add, before I—?

Well, I haven't been involved in the writing of the improvement plan. Obviously—[Inaudible.] If it's implemented, that's the key thing. We know what we need to do. I don't think we have stretched organisations more at a time of acute pressure at the moment, but if that plan is implemented, and the question is 'How?' or holding to account for the delivery of those, be it at local, regional, national level, yes, it will definitely improve patient outcomes.

I completely agree about non-cancer pathways. We need to get the wider diagnostic pathway right, because a number of those patients will have cancers, and if they're waiting for two years before they have their tests, that's a disaster for cancer patient outcomes. And just to say, 'There's not enough money'—there is. As Professor Dolwani has said, we're spending £8 million on outsourcing of these services. So, the money is in the system; it's how we use it and how we use it most effectively. 

Thank you, Professor Crosby. Just finally, Chair, if I may, the national endoscopy programme itself has been around for a few years now. What does the future of that programme look like? How long are we expected to have this programme? Are we having a second version?

I don't know if I'm the right person to answer that. I think, if we don't get an acceleration of the pace that needs to happen with decision making and with support, if we don't get a change in the accountability and directive arrangements, there'll be a lot of low morale, and there already is, in the system. A number of us who, essentially, just take pride in trying to get a better service for our patients will get very demoralised. 

The programme is really built around a lot of people being motivated and there being a lot of goodwill to make things happen and to make things change. So, the future of it will depend on how much support we're given and how much resource we're given, and how the culture changes from what it is now.

Thank you. I think that gives us a clear recommendation.

Thank you, Jack. Joyce Watson.

One of the areas that we haven't discussed, but was mentioned earlier today, was the community diagnostic hubs. Would that help you to deliver your services on a wider basis, beyond, as you've quite rightly pointed out, cancer—the other important aspects?

I think that's a very good question. Community diagnostic hubs no doubt will have a role, and a really important role. Some of the innovations that we talked about earlier may well be better placed in those areas, but the problem with endoscopy, per se, being based in those areas is that endoscopy is not like a scan, where you go in, you have a scan and it's done. It's an invasive procedure; problems can happen, people can have complications and you need to have enough safety built in. Around that, there is built a huge amount of decontamination facilities for scopes to be clean and sterile.

So, wherever you have an endoscopy, there's a lot of ancillary things that are invisible to the patients and to others that actually have to be in place. Whether that's easily possible or safe in a community diagnostic hub is very difficult. So, for many diagnostics, I'm sure that that is absolutely the right way to go, and some of the endoscopic innovations as well hopefully will be placed in those areas, but for core-capacity endoscopy, probably less so.

Thank you, that's useful. 

Thank you. A question to both professors, I suppose, as we draw the session to a close: are there any questions that you think we should have asked? What are your key messages to us? Is there anything that you would want to say that has not been drawn out in discussion today and will help our work in terms of making recommendations to improve endoscopy services? Professor Crosby.

Following on from the last question, we've had a really good endoscopy programme. It has developed plans and it has developed strategies, and we've sometimes struggled to deliver those, haven't we? I think that is now being adopted and incorporated into the wider diagnostic programme, which will sit within the NHS executive and will be part of planned care recovery, et cetera. So, our plea would be that that has the authority and mandate to actually make some of the things that we know we need to do actually happen.

And, I think, yes, in terms of—there are some plans around separating out elective from acute services, which I think are really important. Any service that's based in an acute hospital gets disrupted by acute care; hence the model that had been developed across the UK about diagnostic hubs, be that regional or local, but, on a regional basis, the co-location of endoscopy services with imaging services definitely has huge advantages. So, when a patient has an endoscopy and they're seen to have a likely cancer, why not have a computerised tomography scan that day or the next day? There is no reason, other than co-ordination and communication, for that not to happen. In Aneurin Bevan and Cardiff and Vale, through the network working of pathways and the single cancer pathway work, we've demonstrated that we can do that. It's not easy, it's complicated. But I think that Wales is in a better place, in terms of having those pathways that we can implement. So, my plea would be to make sure that we get those, make sure that the diagnostic programme delivers, the diagnostic hubs and local facilities are delivered over the next year, 18 months. 

There we are, thank you. And the final word of the day to Professor Dolwani.