Cynulliad Cenedlaethol Cymru

Diolch, Dai. Good morning, everybody. In your written evidence, you identify significant concerns about a lack of capacity in endoscopy services in Wales. Taking those concerns into consideration, how confident are you that NHS Wales will deliver the national roll-out of the new faecal immunochemical test screening test by June 2019?

Do you want me to go? I suppose the reason for the inquiry, really, is actually addressing some of those concerns that perhaps the NHS is not in a position at the moment to deliver on the capacity and demand that is going to be required to deliver on the new FIT test. As it stands, because it's likely to increase uptake just because it's an easier test to use, and if we moved to the new threshold that is being talked about for 2023, and reduce the age, then certainly the NHS, at the moment, is not in a good place to be able to meet those needs. So, our concern, and we've written it in our evidence, is that it will actually crash the system. 

I'd just add to that that the lack of capacity is probably the single biggest barrier to introducing the new faecal immunochemical test into the screening programme in Wales, as well as lowering the screening age to 50 and lowering the sensitivity threshold.

I think the only thing to add to that as well is that that's part of the reason for phasing the roll-out from January onwards, just to check. And I think we just need to keep an eye on how the service is managing, and making sure that we are ready to launch, hopefully, in June in full.

Thank you. You've answered this in part, but I'll ask in case there's something that you need to add. We understand that Bowel Screening Wales will screen from the age of 50, every two years, at a more sensitive threshold by April 2023, as you've just mentioned. To what extent has this target, do you think, been determined by the current endoscopy capacity? Is the capacity leading the target, rather than the other way around?

I think, probably, in terms of the timing of the target, it is to give, in theory, time for the endoscopy services to increase their capacity. I think the important thing to note there is, if we get to that point by 2023, that's where Scotland is today. So there's a question of ambition there as well: whether or not, actually, we should be going a bit further, thinking that probably Scotland's not going to stand still over the next four years on this and we're still going to be behind the curve, even if we do meet that target. 

Okay. Thank you. That's useful. 

Thank you. In that regard, is Scotland meeting its target, because obviously the lower that threshold, the safer it is for the citizens of Wales? So, in that regard, is it highly ambitious and likely for Scotland, in your view?

Sorry, I didn't understand the question. 

So, in terms of that 80 μg FIT threshold that they have in Scotland, is that, in your view, hittable for them and are they managing it? So, in terms of our capacity and in terms of what we then need to do to roll out our systems in terms of capacity.

It's quite a complex thing for Scotland in terms of—. At the moment, obviously, the demand is increased. I think, anecdotally, we're hearing that there has been an increase in demand for endoscopy services. I think it's fair to say, as to our system here in Wales, the quality agenda is really, really high, so the quality of our colonoscopies are really, really sound in terms of being accredited. They have a different system of accreditation in Scotland. So maybe they're able to get more people through the system. So whilst they're able to meet some of the demand that has been created by the introduction of FIT from 80 μg in Scotland, they're able to get through more numbers, whereas we are probably—. There's a crisis in what we currently have available in terms of capacity, but also then I think we need to congratulate ourselves, actually, on the quality of the service we're providing when we do have it, but we just need more of it. 

Okay; thank you. I think I can follow what you're saying. 

Just about. [Laughter.]

Yes. [Laughter.]

So, in that regard—. I have a question around this. In that regard, we're talking about capacity; what does that look like in terms of what we have to have in place in order to be able to increase the supply of diagnostics and also lower that threshold so that it's at a better level in Wales?

Well, one of the things we need is more NHS staff to be carrying out endoscopy tests. So, when someone takes a FIT test and it detects hidden blood in the poo samples, they'll be referred for a colonoscopy to either diagnose bowel cancer or rule it out. Because FIT is a more accurate and more sensitive test, and because it can increase uptake, more people will be referred on for a colonoscopy and, at the moment, there just simply aren't enough NHS staff to carry out the number of diagnostic tests required. 

On top of that, we also need to use current capacity more productively and more efficiently, and we also need to manage the demand going into the system. So, initiatives like using the FIT test in primary care potentially could help to manage that demand going through to colonoscopy services. 

Okay, thank you. So, in your view, it's quite clear from what you've already stated that an increase in the usage of this test will increase demand. So in that chicken-and-egg situation, as has been referenced, could you extrapolate a little bit more for me, in terms of training of staff, what other things need to be in place so that we're ready for the FIT test?

Cancer Research UK has been looking at this quite a lot around the diagnostic workforce as a whole—not just endoscopy, but with a particular focus on endoscopy. I think there are a few different things that probably need to happen at the moment, where we need to look at the long term: how do we meet demand, how do we make sure that we've got the right workforce in place, and the new Health Education and Improvement Wales, I think, has got a really important role to play there. I think—

Is it playing that role?

Well it was only just set up, in October, so I think it's still trying to find its feet. 

It may only just have been set up, but this could be one of its—

We would really like to see Health Education and Improvement Wales prioritising diagnostics. We've been told that, actually, they need to spend a little bit of time setting out their strategic direction, which again creates a delay in then prioritising what their work programme is going to be. So, is that going to be 12 months before they even start looking at—?

So you should identify an area there with them—

Absolutely.

—that needs to be front-loaded in terms of their—

So, we'd love to see HIW prioritising diagnostics for—. Well, it's not just cancer that, obviously, you'd find as a result of those diagnostics tests—there are other diseases as well, such as Crohn's and colitis, which are equally debilitating for people. Obviously, we're here talking about cancer, but others would—. 

So, there's that element. What else? 

And linked to that as well, we don't really have a huge amount of data in terms of what the gaps actually are. We know that there are gaps. We don't know exactly how many endoscopists we're lacking and how many we need. And so, almost—.

Well, we can guess that we are. So, in terms of how we then propagate that, what steps would—

So, we would like to see an audit take place of the whole diagnostic workforce to be able to identify those gaps, to be able to then feed into HEIW's work. But then, as Asha mentioned just now, it's about that skills mix and how we make use of other staff, so nurse endoscopists [Correction: 'non-medical endoscopists], to be able to free up capacity elsewhere as well. So, there are a few things that can be done.

We know that, right now, health boards are doing a lot of insourcing and outsourcing, which is helping in the very short term but isn't sustainable and is very expensive. So, I think we need to get to a point where health boards can move away from that, to that kind of more long-term solution, really. 

Okay. Moving on, Neil, on the same sort of subject area, really. 

Yes, it's about diagnostic service capacity and waiting times. Diagnostic endoscopy services have seen the largest decrease in median waiting times in 2017-18—indeed, a sharp decline in the first couple of months of this year. Those are the latest figures that we've got. But it's still clear that demand for diagnostic tests is outstripping capacity, and despite the task and finish group's recommendations and the extra funding that was provided as a result of that to improve waiting times, significant challenges clearly remain. Some witnesses have suggested that this demonstrates that a radical redesign of the current system is needed. Do you agree with that? 

Totally. Absolutely totally agree with that. Yes, you'll probably find if you look at the waiting times that, actually, things have improved. But as Andy's pointed out, that is as a result of investment from Welsh Government, absolutely, which is very, very welcome, but that money's been directed to waiting time initiatives to get the waiting times under control. And what you then find is that the time and the money that need to be spent on redesigning the system and finding those long-term, sustainable solutions, we're not seeing that.

And to be fair to Welsh Government and the NHS, they are looking to set up a programme of activity around endoscopy, but we would argue that we had a task and finish group looking at this very issue back in 2013-14 and, actually, a lot of the recommendations from that task and finish group have not been delivered. So, what we'd like to see, obviously, is actually a revisiting of those, perhaps. We don't need to talk about what the problems are; we know what the problems are, but we just need that action now. You know, let's take this out of the committee rooms of these corridors and Cathays Park, and actually get some delivery on the ground, which is actually where the difference is going to happen, because at the moment we're not seeing that. We're seeing a lot of talk, a lot of rhetoric, a lot of nodding of heads to say, 'Yes, there's a problem', but we haven't seen any definitive action.

We're hopeful that the programme that's been put forward by Welsh Government and senior colleagues in the NHS will deliver, but we haven't seen any pace behind that. We're still 18 months down the line from when we both started in our posts to actually seeing any definitive action. So, we really need to gather some pace on this, because FIT is coming in in January, and by 2023 we want to be screening from 80 μg and from 50 years of age and, actually, we want to take it even lower than that in terms of the thresholds. So, the lower the number, the higher the sensitivity. There's a lot to do.

So, the diagnosis is clear and it's already there; you don't need to do any more work to identify problems—it's simply a case of implementing what's already been suggested. 

I think there's some work to be done in terms of identifying the capacity gaps, and then getting senior clinical buy-in at health board level, which doesn't seem to exist at the moment, getting the finance people in the same room as the planning people, and getting that strategic buy-in. And, hopefully, from Welsh Government, that direction will come to actually make this happen, which we haven't seen.  

A supplementary, Rhianon. 

Very briefly, in that regard, you've mentioned the endoscopy programme, and I know we'll probably refer to that later on. So, in terms of the timeline around that, because obviously that's going to be a critical lever in this in terms of moving that forward, et cetera, and the pace, what's the expectation around that? 

'We don't know', is the answer. I don't think we've been given a time frame, and I think that's something that we do need quite desperately as soon as possible. 

Okay. Neil, have you finished on this point?

Yes, on this point—following on from that, really. So, to what extent do you think that the new national endoscopy programme addresses the concerns that you've raised about a clear lack of leadership from Welsh Government, the NHS Executive and health boards in addressing these capacity issues?

It's really difficult to say definitively, because we haven't really seen anything come out of that programme yet. Again, it's relatively new. It's sort of been moved into the NHS collaborative from Welsh Government's previous endoscopy implementation group. But, I think, again, it's that pace of change. We do need to see some plans fairly soon. 

And there's a slight difference in approach between Bowel Cancer UK and Cancer Research UK. 

Is there?

From the written evidence, because Bowel Cancer UK says that the problems are

'due to a lack of clear leadership within NHS structures to make Wales wide strategic decisions
on the best way to approach introducing the FIT test for use with symptomatic patients, it is
yet to be introduced.'

And Cancer Research UK seem a bit more cautious, saying

'there are still unanswered questions of how the implementation of FIT in symptomatic patients will work in primary care.'

I would go on record here saying that we do feel that there is a lack of strategic direction, or there has been up to this point. I think now—. And you're going to have a lot of very important people in this room later on today, who will tell you—

We've got very important people in this room now. [Laughter.]

Thank you. [Laughter.] No, so, you know, very important people within the NHS who are going to sit here today and tell you that everything is in hand. And I suppose that's our concern. And when we approached the committee to potentially carry out this inquiry, it's about, 'Actually, how do we get this on public record now? We've gone through this in 2013-14.' These recommendations have been made already that something needs to happen. And, in the meantime, FIT has been coming down that track like a train loaded, and we have not moved forward, in our view, very far at all. And there's a lot of frustration in the clinical community, and I think, actually, they're just like, 'Bring it on. Bring it on. Let's actually—.' We need the pressure to actually make the changes actually happen. Unfortunately, what that means for patients is that they're going to be waiting longer, and actually, you're going to have people having a positive FIT result who are not able to actually access that diagnostic in a timely manner.

And that is why we are quite outspoken about that we need that strategic leadership, but it's quite subtle within the health boards about how that's organised. And I'm not clever enough to understand how that is. Somebody somewhere needs to have an understanding of how the planning, the finances, the clinical community, and executive strategic leadership come together to make this happen, because otherwise it's going to be a disaster.

Thank you. That's admirably clear. 

Okay. Thank you, Neil. Angela, the floor is yours. 

Thank you. I think some of the questions I wanted to ask have already been answered. But do you know which health boards are outsourcing, or insourcing? 

We know the ones that have submitted evidence. We've seen that in those. I think the issue is that there is that, as Lowri was saying, kind of lack of a national approach, which means that health boards are kind of on their own. They're under pressure to meet waiting time targets for both endoscopy waiting times and cancer waiting times, and they're not given that space to be able to really think long term and find those more sustainable solutions, and so just throwing money at outsourcing and insourcing— 

We talk a lot, though, about national approaches on so many things here, and sometimes it's just—the real situation is that it ain't going to happen. So, I'm quite interested to understand, on a health board by health board basis, which ones are the ones who really aren't getting to grips with this, because if we can't tackle a national set of objectives, maybe we can tackle it a different way, because there are lots of different ways of trying to resolve this. Because, ultimately, however we do it, we just want it resolved. So, it would be really useful to have a very clear understanding of what your perception is of what the health boards have said in their evidence, because there's always going to be a difference of opinion. 

I don't want to sit here and name health boards who are—

No, but that's the problem, you see, people never do, and then—but you ask us to solve a problem. 

Yes. Well, absolutely. We can—. I can get you that evidence. I haven't read the 145 page documents, and I think only three health boards—Powys, Cardiff and Vale, and Cwm Taf, is it, have responded. So, you know—. And Cardiff and Vale, in their evidence, have been very open about their what they call insourcing. So, they're getting people from outside to come in and use their facilities, as opposed to outsourcing, which is sending people to private facilities. So, they've been very open about that. It's something you can go away and identify.

Actually—

And that's—

Sorry. The joint advisory group for gastrointestinal endoscopy carried out a national endoscopy audit in 2017, and some of the questions they asked were about outsourcing and insourcing. So, there might be some evidence and data there to look at, to see which health boards—

I'd be interested in that. And, in fact, Asha, that brings me on to the other question that I wanted to ask, which was about—because I saw that there was the 2017 audit. Did it break it down, though, into where the waits are? So, are the waits universal, are the waits for diagnostic, what are the waits for surveillance, what are the waits for actual treatment because they found something untoward? Because I think that would also be quite an interesting journey to try and plot. And I wondered if you had that kind of information.

I'm not sure if the audit broke it down by referral route, but I think what we do know is that there are breaches across probably all referral pathways in, because the endoscopy capacity is constrained. And, obviously, no matter which referral route people are being referred from—whether that's through the GP, screening or surveillance—they're still being referred into the same diagnostic service, and the diagnostic service is overstretched and doesn't have enough staff to actually deal with all the sources of demand that are coming into the system.

So, are you saying there's a gap, then, between the diagnostic service and the surveillance? Because my understanding was that surveillance fed straight in, so it was an auto-recall that was just slotted in to the diagnostic, or into the endoscopy, service.

I think what you find, and, again, I think reading some of the evidence that's been provided by health boards, actually, the surveillance, which is patients who are at a high risk—so people who may have colitis, Crohn's, that kind of thing, who should be having routine endoscopies to actually keep an eye on them so that if they do get cancer they'll catch it nice and early—. I think that what you're finding is that to prioritise the waiting time requirements, in terms of performance measures that they have to report on, they might sacrifice those surveillance lists, because there's no reporting to Government or the wider NHS on those particular surveillance cases. So, what you've got, which is crazy, is high-risk patients who are being—. My husband is one of them, for example. He has colitis, and he's never had a recall for a colonoscopy, even though he was diagnosed with colitis going back over 10 years ago. So, he's never had a recall, even though he, because of his condition, is at high risk of bowel cancer. So, you have things like that happening within the system, because of the way the system is organised. And I think, with all the best will in the world, you've got clinicians, managers, finance directors, chief executives, under huge pressure out there, but what we say with bowel cancer—this disease is preventable. So, if you get the screening right, you can actually prevent the cancer—you remove the polyps, which the screening identifies, and actually you will prevent the cancer in the first place. It's low-hanging fruit, in the words of a clinician who you'll speak to later, Jared. So, if we get bowel cancer nailed, it can go from being the second-biggest cancer killer, to—actually, we believe that nobody should be dying from bowel cancer. And the key to that is endoscopy.

No, I totally get that. So, just so that we completely understand the surveillance process: so what we ultimately want then is a system that calls someone forward—I don't know, because of age, or because they have colitis or risk or whatever it is—they're called forward, they're checked out. It's either, 'You're fine, go away, see you in X years' time', or, 'You're at risk, we want to see you in six months, or one year.' And so we want a system that programmes those recalls in automatically, so that, whatever happens—on November the whatever we are—that person is popped up on that date, no matter what else is around it. So, really we're looking for—. So, there's the pressure that's letting us down, there's perhaps people not programming it in, because are people going back to paper-based notes? Is it automatically being—? Is there a system? Is there like an endoscopy recall system that takes, you know, 'Lowri Griffiths', pops her in there, and then says, 'Right, back in five years, back in two years, back in six months', and you pop up on that due date, in those particular times? So, is it the technology as well that we need to surveil this, as well as then having—? Because we're looking at another inquiry at the moment, where it's about driving change—and I absolutely get your argument about let's create the need and that will help to drive the change. So, yes, bring it down to 50, yes, put in FIT, et cetera. But I want to make sure that we have the systems in place that would deal with it, to surveil it. 

Absolutely. I think it's all—. I think health boards have got different systems to address their different pathways. So, you've got surveillance pathways—you talk about those people at high risk; you've got people coming in on the symptomatic, and you've got the screening. So, they're dealing with all sorts of different things and I think the challenge with endoscopy doesn't quite sit within any directorate. We've heard that as well before, haven't we? So, it's kind of like a bit of a floating—. Because it services so many different kinds of areas and disease groups. So, there are challenges. So, I think the answer to that is that there is no national system.

Okay, so a quick answer then, again, to go back to surveillance: should we then say that every single person who is at risk should automatically be put onto the Bowel Screening Wales system, and they take it forward and they act as the umbrella?

Absolutely, and that's something that Bowel Cancer UK have been calling for for quite some time, a national approach to dealing with these high-risk patients who need to be seen yearly, two yearly, because they're at high risk of bowel cancer, and a national approach would be favourable because it would mean that these people, who we know have a high chance of getting bowel cancer, are seen on time and regularly and are being provided with high-quality services.

Just to make sure I understand: Bowel Screening Wales doesn't deal with anybody younger or with other conditions.

No.

Thank you.

Julie had a supplementary, then Helen Mary.

It was going back, actually, to the outsourcing and the insourcing that Angela was asking about: if health boards are using that, because they've got such a huge number of people to deal with, in itself, as a short-term solution, as long as there's long-term planning going on as well, surely that is not something that we should decry.

No. No, absolutely—as long as they're both going hand in hand. And, in our recommendations, we say we want to plan to see the decrease in outsourcing—the redesign, the capacity redesign and that remodelling of services. And obviously, then, when you get that, you're going to increase the capacity and then obviously then you're going to have the outsourcing. It's just going to carry on and they all do it, and absolutely—

It would be better if they didn't, but I think, you know, in the circumstances—

And then you're going to get a balance then, aren't you? So, yes, it's not a case of, 'Let's just stop outsourcing', because obviously then you're going to have patients waiting even longer and it is okay to have patients go in on a Saturday or in the evenings or something like that, if they're getting their endoscopy, but it's very expensive.

And it's just not sustainable.

Yes, and you need the long-term planning.

Yes, which is what we're lacking.

Thank you.

Helen Mary.

Just taking this back to the surveillance issue, you said you think we need a national approach. Do we need targets? Does the service need to have targets set around surveillance?

I think that could be potentially helpful in making sure these high-risk patients are seen on time, certainly with people who are referred urgently for the system. The waiting time targets have helped to an extent to make sure that patients are seen on time and it could help here too.

Okay. Happy? Okay, Julie, the last couple of questions are with you. Some of them have partly been answered already, but feel free—

Yes, I was just going to ask about workforce planning and the poor data, which I think you've already referred to. Basically, health boards are doing what they can afford rather than doing what's the best thing. What suggestions have you got about health boards overcoming their current and future diagnostic workforce challenges?

For Cancer Research UK, it is all about, you know, we've got this brand new body, Health Education and Improvement Wales that is supposed to be coming in and providing a new, nationally driven, strategic look at workforce planning for the whole health service. We would like them to take a really clear focus on diagnostics, because I think that's where we know there are gaps at the moment, and to support health boards in things like capacity and demand modelling and then looking ahead to how many training places we need, making sure they're happening and looking at different ways we can use skills mixes and things like that. So, I think we're expecting a workforce strategy to come out of HIW at some point, once they've really got going, and I think we would be really keen to see diagnostics be a real priority in that strategy.

Right, thank you. And then what is your position on delivering a FIT test at a very sensitive level—i.e. 10—in the primary care setting, looking at people with vague symptoms of bowel cancer, who wouldn't be put on the urgent list?

I think—we know there's evidence that this can make a really big difference. I think we need probably more in terms of—you know, there is a difference between using this with low-risk and high-risk patients, so what's the best way to approach it? We know that some health boards are ploughing ahead, because they know that this will make a difference to them, but, again, it's whether an all-Wales approach would be better, to make sure that the equipment that we need to do those tests and to make sure that we have equity and parity across Wales in terms of the way that we're doing that is in place, really.

I think there are still a lot of unanswered questions around FIT in the symptomatic population, mainly what to do with patients who have a negative FIT. You know, what strategy do we take with those patients? So, I think that, whilst there is potential for FIT to help decrease demand on diagnostic services, we just need to make sure that it is used safely and effectively.

And then, also, linked to that as well, we know there's a little bit of evidence to suggest that some patients might still be missed through that. And so, it's making sure that there is proper safety netting in place so that, if people go through the FIT and have a negative result, then they're still being followed up and checked if they're experiencing symptoms.

So, it's having the planning right.

Yes.

Thank you. And the last question—this is to Andy, actually: you're calling to increase the uptake target for bowel cancer screening in Wales from 60 per cent to 75 per cent. What sort of time frame would you set for that, and is this realistic, do you think?

Yes, I think it's very much a long-term thing. We've not hit the 60 per cent target since the programme was established. It's something that we've been supporting with Bowel Screening Wales. So, earlier this year, we did an uptake campaign with them, the 'Be Clear on Cancer' campaign, and the early results are showing that that did have an impact on uptake. I suppose that, if we're going to reach that target, then, again, what are the long-term plans to make sure that we do that? Running a tv-led advertising campaign, as we did for 'Be Clear on Cancer' in February and March this year, is quite expensive—are there the resources available to Bowel Screening Wales to look at that? Other interventions—you know, there are other ways to increase uptake that have got a lot of evidence behind them. But we know that we do need at the very least to reach that 60 per cent target sooner rather than later so that we're saving more lives.

I would just add to that that if we do want to increase the uptake of screening, FIT is the best way to do that. Research on the pilots has shown that FIT can increase uptake by around 10 per cent, particularly in previous non-responders and first-timers. So, if we do want to get to that 75 per cent target, then we need to introduce FIT as soon as possible.

Okay. Rhianon, you had a supplementary.

Very briefly. In terms of the negative FIT test that you talked about and the concern around that in terms of future diagnosis, is that purely dependent, then, on the threshold that it's set at? Because, obviously, it's very variable now across the UK, and you've already mentioned that some health boards may be having, perhaps, best practice in a lower threshold anyway. So, is there a concern around that?

I think it's important to separate the two things out. So, you've got the screening threshold, which has been set for Wales at 150, coming in next year, then you've got this kind of movement towards setting the threshold within primary care for those who present with symptoms at 10, and there's some argument that it should be around seven, because what they say is that, at around about 10, you're going to—

[Inaudible.]—couple of cancers.

A couple of cancers, yes. So, even though it's really, really sensitive, some say it should be around seven, because it detects that tiny microscopic level. So, I think it's important to distinguish between the two levels, and we want to get the population-level screening level right down to 80 first, and then beyond that as well. Hayley, who will probably speak later, always talks about actually getting it as optimal as possible. So, there are two distinct things there. But the issue that you've got with bringing it down to 10 in primary care is: can you guarantee that every cancer bleeds? And I think that that's the issue. I don't know if you can. Dai, you're a GP; would you be confident with your negative 10 FIT result?

No. It depends on the patients' stories too.

Yes. So, it's really complex, and I think there's a lot more work that needs to be done to do that research, to actually give it that evidence base, before it's actually rolled out across primary care or, as some people say, within secondary care as a stratification tool.

I know we're running out of time, but in terms of the mention earlier on of a more national approach around this on many levels and the radical redesign that you've spoken of, have there been any costings attached to this? Because we're talking about things in isolation in terms of Health Improvement Education Wales et cetera. Have you, as organisations in the third sector, had any scope to look at what this radical redesign is?

In terms of costings, it's really difficult for us to say for certain.

Because, obviously, the NHS is under huge pressure from all cancers, from all conditions.

I think what we do know is that if we're going to hit that 2023 target—just talking about FIT screening for a second—we're going to need an additional 15,000 colonoscopies every year. So, it's significant. I think that's where having that kind of national leadership is really important to be able to identify exactly what that cost will be. I think it's really important to note that doing nothing is not cost free either, as we've seen. It will become more expensive to try and do the short-term initiatives to manage this and get patients through in endoscopy than having that longer term, strategic focus.

I think the Wales cancer network have actually done some costings in terms of an overall figure that may be required to meet some of that demand in future years. But, again, we don't have the detail or the insight of that, but they are on it. 

I think I'd also say that whilst there might be upfront investment in terms of redesigning the service, there are also those long-term gains to be made. Because the earlier you diagnose bowel cancer, not only is it more treatable and curable, but it's also cheaper to treat at stage 1 than it is at stage 4.

Okay, thank you. 

Diolch, Chair. Welcome. How confident do you feel that the faecal immunochemical test—FIT—will be rolled out across Wales by June 2019?

Very confident, actually. The plans are progressing really well. The project's on target to implement a phased implementation at the end of January, and we fully expect to roll out nationally in June.

Okay, thank you. In terms of comments that we've had previously, there seems to be concern around the diagnostic capacity to be able to keep up with this roll-out on the date that we've discussed across Wales. So, what is your comment around that?

So, we're planning to introduce FIT as a phased implementation. In terms of that process and the FIT, I think that there will be capacity in terms of that process going forward. With the FIT implementation, I think it's just important to explain why it's a phased implementation as well. So, this is going forward on work that we've done in terms of implementing human papillomavirus and cervical screening, where we're doing a phased implementation to see how the programme copes and performs in that way as well, so we can learn around that process, so that when we implement in June, that implementation will go really well.  

Okay. Angela's got a supplementary on this point.

Just on this one point: when you're looking at your phased implementation, how are you choosing the health board areas that you're implementing into?

We're not, actually. We're going to send a FIT kit to one in 28 people. So, we invite by date of birth rather than by geographical area, so it will be spread across Wales.

Okay.

We felt that that was the only fair way of distributing the invitations, so it will be a random one in 28 people who receive a FIT kit. 

Okay. I just wondered if it might be the areas where the endoscopy services were better.

No, it isn't.

Okay, thank you.

Okay. Rhianon.

So, to clarify further—that's very interesting, actually—when will it be 28 out of 28? When will it be full roll-out? I know you said 2019, but is that—?

Yes. One in 28 from the end of January; everybody receiving a FIT kit from the beginning of June. Then, we've developed an optimisation plan that we submitted to the Wales screening committee, which hasn't yet been formally approved. Our plan would be to optimise age expansion because we think that would be where the public health benefit would be greatest. So, we would sustain the FIT at 150 probably until April the following year and then expand the age range.  

Okay. And with regard to the one out of 28—because this is ambitious—by June 2019, how have you based your assumptions, as the expert body, that we have the capacity to actually be able to cope with the demand by 2019?

If I could come in here, we have been aware of the requirement to introduce FIT for about three years. We have spent that time very carefully working with all the health boards to plan for this. So, we are preparing for the end of January on the basis of at least two years of planning, talking to the health boards, acknowledging the challenges within the health boards, and it is an agreed, pragmatic position that we can start with the one in 28 basis. Of course, that will then accelerate within a matter of three or four months to a full coverage, with the opportunity to learn as we go along. And that, as my colleague Sharon indicated, is from our previous learned experience with the introduction of other programmes. So, we don't intend to start with not being able to do what we say we're going to do, but we're also realistic, as we've learned with HPV, for example, where, I have to say, we are ahead of other parts of the UK in this, where we implement in a way that we can manage the process through to the objective that we're seeking to at the earliest possible date, which, in our case for bowel, we are saying is June next year.

Okay, thank you. With regard to the differences in the sensitivity test—for instance, Scotland's at 80 and we are thinking on a different level of 150—what is your view in terms of that being the threshold in Wales?

We are taking a pragmatic view about this. We want to get the FIT threshold down, over time, at the earliest opportunity. We note the Cabinet Secretary's requirement for us to achieve optimisation, both of the FIT threshold and the age extension down to age 50, by April 2023. We're modelling that at the moment, as my colleague has just said, and we await the outcome of the deliberations of the Wales screening committee in response to our advice.

Good. Okay, Rhianon?

Just briefly, in terms of that outcome, when are you expecting to hear from the Wales screening committee?

The Wales screening committee will decide when it wishes to tell us all, but I guess that'll be very soon.

Okay. 

We have presented, but, again, it has to go through due process of—

And just before I finish my questions, in terms of comments we've received, do you think the whole of the endoscopy sector, and bowel screening in particular—is there a need for a radical redesign of the system?

I think it's incredibly challenging for health boards at the moment. They are making some improvements with waiting times, but that, by and large, is by using short-term waiting list initiatives that don't appear to be sustainable. So, I think—

So, how can you then feel confident that, with even more demand on the system, it's going to be—?

I think because, as Quentin says, we have worked so closely with them over the last two years, they have got plans—they have short and medium-term plans—that I believe are going to enable them to implement FIT. And then we need to be working with them as a national programme, really, to make significant improvements for sustainable capacity going forward.

And I think the point about the 150 cut-off, whilst it's not where we'd like it to be, it's absolutely pragmatic. It is going to deliver improvement on our current test. It will detect more cancers and more adenomas. It'll only increase demand by about 300 procedures a year across Wales. So, it shouldn't significantly challenge them immediately, but it is really important that we work very closely with the health boards to develop that longer term increased, sustainable capacity.

And if I could just add, just for the committee's benefit—and it may well be aware of this, so apologies if you do know this—in terms of the overall endoscopy activity, the screening contribution to that is less than 10 per cent of that whole activity. So, we are very realistic in our estimations of the impact on the totality of endoscopy services.

Okay, moving on—Helen Mary.

It's a supplementary to this, really. I always get worried when I hear the word 'pragmatic', although it is sensible, I know. Just for clarity, are you telling us that the fact that we're setting a threshold that is quite a lot higher than the one that's used in Scotland, and higher than the one that's going to be used in England—is that determined, effectively, by the endoscopy capacity? I think that the number of procedures—300 doesn't sound like a lot to me—sounds like an awful lot of effort, and how much benefit—? I'm not a clinician, but I'm left with the question about how many cancers are we going to miss by setting the threshold at this level? Isn't there a case for being a bit more ambitious and saying—well, for us to be saying to Welsh Government, 'You need to be investing', so that we're not setting a threshold that means that people with cancers will not be picked up, or will be picked up later. 

I think that's a really good point. In an ideal world, we would much prefer to be implementing with a lower threshold, but we've got to look at the bigger picture. It is an improvement on our current activity; we will be picking up more cancers and more polyps without stretching the service to collapse, at the initial implementation. The advice that we've been given from everywhere around the UK, including Scotland, is that this is a very sensible approach—to get it in and then improve as quickly as possible afterwards.

But it's a sensible approach that will mean that some people will get ill who wouldn't otherwise get ill.

But we have to, with all due respect, acknowledge that there are people at the moment who we would be identifying cancers in if we had testing or age extension. So, we accept the challenge, and it is our intention to see this optimised as soon as we can, but we have to work within the realities of the challenges within the service at the moment.

Can I add—? There's a lot of evidence in terms of modelling and public health benefits: the UK National Screening Committee and the School of Health and Related Research have produced extensive models in terms of, if you had the FIT test, how would you implement it to get the best benefit? And it's quite clear from that data that, actually, it's in age extension where you'd gain your public health benefit. The FIT level is really important, but if you think about our population now, which is 60 to 74, they've been invited for some time, so they've had several invitations—some of those—as well. To actually reduce the level in that population, to get the best benefit, you're better off extending the age range, because that's when your quality-adjusted benefits come out, because you're doing this in younger people in terms of going forward. So, I think there's a real concentration on the FIT levels, but, actually, we shouldn't forget about actually who the eligible population are in Wales.

Okay. Are your own questions covered as well, Helen?

To a certain extent. I just want to unpick a little bit about—. In your paper, you said that all the health boards are currently funded for more screening activity than they're doing, and yet they struggle to deliver that target. Could you just expand on that a little bit and tell us a bit more about what the issues are there? Because if they're being funded to do the work and they're not doing it, then the issue is obviously not money, or not money alone. So, can you unpick that a little bit for us, please?

Yes. The issue isn't money. They have, for some time now, been funded for more activity than they've actually been able to deliver. The main problem, and there are slightly different issues in different health boards, but the main issue is the pressure on the symptomatic service. So, if we lose a screening list for whatever reason, the backfill of that list is nearly always with symptomatic patients. So, we're losing activity and there isn't capacity within the system to put on additional screening lists.

Sorry, Chair, can you just clarify what you mean by 'symptomatic list', because you've lost me?

I'm sorry. The symptomatic service would be the population that develop symptoms and go to their GP and get referred into the endoscopy system—

But how can you lose that list?

If we were to lose—. So, the screening lists are set up as dedicated screening lists in each of the local assessment centres, but they sit within the wider endoscopy service, where symptomatic lists are run at the same time—

And if, then, a health board has a run of patients—very crudely—who have symptoms that require investigation, then the health boards sometimes will prioritise that requirement on pre-booked, scheduled screening lists.

The symptomatic service waiting lists tend to be longer than screening, so the management team within local assessment centres often prioritise symptomatic patients over screening for backfilling of lists. So, we tend to lose lists and then are not able to have them replaced by that health board.

That, actually, Chair, was the question I was asking previous witnesses, because where the wait is—. So, what you've just said makes absolute sense, and that, I assume, is why people who are on a surveillance programme get dropped, because the trauma cases, the symptom cases and the more urgent cases—

The more urgent, symptomatic patients, yes.

Yes, it's the accident and emergency department versus elective, in a way.

In a crude sense. I really wouldn't like to be drawn into talking about A&E and unscheduled care, if you don't mind.

But that's the key thing for us to understand: where those waiting problems sit. So, we almost need a divorce between the, 'Oh my god, I've got something wrong with me now', and the GP saying, 'Go in', and the people who are on that programme of follow-up. Because the previous witnesses were talking about people with things like colitis and Crohn's, who are at risk, just falling through that gap, and I assume that's why. 

'Hot and cold' is probably a better way of describing it. 

Yes. Thank you, Dai, that's it exactly. [Laughter.]

Helen. 

I understand a bit more clearly that there is a problem, but I still can't quite understand what the problem is for the health boards. So, they're being given money and then there is this obvious issue that if you've got a patient presenting with symptoms, I think we'd probably expect them to be dealt with before people who are not yet ill or we don't know they're ill. But if they're being given the resource, why can't they do it? Is it bits of kit, is it not the right people or is it the right people in the wrong place? You have to bear with us: we're not clinicians, but—. 

I think these are questions you may well wish to put to people coming to subsequent sessions. 

We undoubtedly will. But with respect—

Absolutely.

We undoubtedly will, but you've just told us that you've been working with the health boards for three years to prepare for this—

Yes.

—so you must know the answer to this question. Now, if you want to sit here and tell me that you're not prepared to give me the answer to the question, I'm happy to have that on record, but you can't, on the one hand, tell us that you know that this can be done—ambitious, but you're confident it can be done—and that you've been working with the health boards for three years to get ready to do it, and then not tell us why they're not doing it now, because if you don't understand why they're not doing it now, you can't possibly be confident that they're going to do it in three months' time. 

We do understand, and there are different reasons in every health board, which, I think, just reinforces the need for a nationally directed programme to address these issues. They are multifactorial. They do relate, often, to staffing: that we only have 18 screening colonoscopists in Wales, who are accredited to do screening.

This is the sort of thing that I was hoping you'd be able to tell us. 

We could give you chapter and verse. It's probably best that you get that from the health boards, but, I think, the overall message, really, is that it's really important that there is a nationally directed approach to sorting these problems out. There needs to be a training programme and there need to be workforce initiatives that are ongoing. There are some issues with the environment: some health boards don't have enough endoscopy rooms to manage the demand that they get through. Many have difficulties with nurses: the training of nurses and the recruitment and retention of nurses, equally nurse endoscopists—there are only 20 in Wales. There is a multitude of factors that need to be addressed to sort this issue. 

And there are some health boards that actually perform very well. So, I think, the other bit in this is that it's not that they don't deliver the service, but it's the timeliness of this provision. So, we are very conscious in screening about it being a pathway. So, we're taking patients—well, people—who have no symptoms, we're offering them the test, and then, if they've got a positive screening result, they're then offered a colonoscopy, and that can make them anxious. So, actually, it's the period of time before they get that colonoscopy, then, that we want as short as possible. So, they are getting it, they're just not reaching the timeliness that we would like in order to manage the benefits and harms in the screening pathway. 

No, I can completely understand that. 

Our standards are very, very high. 

Okay. You've inspired, now, a couple of supplementaries. 

Oops. [Laughter.]

So, Rhianon and Angela. 

So, in terms of—. That doesn't necessarily surprise me, but 18 colonoscopists—

Colonoscopists, yes. 

—and 20 nurses for the whole of Wales— 

Yes.

—sounds very, very minimalistic. So, with Health Education and Improvement Wales, how are you working with them so that we can actually frontload what we need and the incentivisations around that? We know that, in terms of GP training, that is starting to embed and work. And in terms of the nationally directed approach, that's all very well and good, but what does that look like from where you sit—briefly, before I get told off?   

Okay. In terms of the screening colonoscopists, 18 sounds like a very low number, but we do quality assure them very carefully and we need to make sure that they—

But they could, with respect, all burn out next week, if this is the case and we are on a huge programme of improvement. 

Up until this point in time, it's been enough, because we need to make sure they're doing enough procedures to maintain their expertise. So, they have to do at least 80 screening procedures a year. So, up to now, it's sort of been enough.

Okay, but where we're at now in terms of this programme—?

What we're doing at the moment is actively encouraging health boards to put people forward for accreditation, and we have got a list of people who are happy to go through that process. There aren't a huge number of colonoscopists in Wales who are eligible to do screening because they have to have done at least 750 lifetime procedures; there are criteria they need to achieve. But I don't see that as a massive problem. There are people who are interested, and there are people being upskilled, and I feel quite confident that we will have enough screening colonoscopists.

For the future, I think we do need to be working with Health Education and Improvement Wales, because nurse endoscopists are the obvious way forward. It's going to take some time. Of the 20 we've got in Wales, only three of them currently do colonoscopy, and they don't do it in the numbers that are required to do screening. So, there does need to be a piece of work around that to make sure that we are preparing them for the future screening programme. But I think as a first point it would be beneficial to get them doing more in the symptomatic service to free up the consultants and others who could fit into the screening service.

Okay. So, there's an obvious piece of work there. And in terms of a nationally directed approach—we've had this in a different guise previously—can you briefly outline what that should be?

I think it should be just that: directed. I think the health boards have been through years of collaboration, and there's been an endoscopy implementation group. I think now is the time to actually be more directive in what we expect the health boards to achieve, and I think that needs to start with a very comprehensive baseline review and some systematic demand and capacity modelling in every health board.

Angela—a supplementary. And then Julie.

I think you've slightly answered it, but I just want to make sure that I totally understand, because I always assumed a colonoscopist was actually a, I don't know, gastroenterologist or some doctor or—. So, is it actually a thing, like being a radiologist or a physiotherapist? Is it actually a—

To do colonoscopy you need to be either a nurse or a doctor. So, our screening colonoscopists at the moment are either gastroenterologists or surgeons. The nurses in Wales are currently doing colonoscopy work within the symptomatic service at the moment, but there are medical and non-medical endoscopists who can do colonoscopy.

And then they undergo, as you say, additional training, and they have to demonstrate that they come into this with sufficient experience and that they maintain a sufficient number of procedures on a regular basis to keep their skills and competency up.

So, it's the continuous professional development programme.

It is. It's an invasive procedure; it carries risks. We need to make certain that the people doing it are absolutely the highest quality that we can get.

Julie.

That may be the answer, actually. I wanted to pick up what Sharon said about the benefits and harm of the screening programme. I wanted to ask: what is the harm? And I don't know whether that was referring to what you just said or—

Yes. We are always very, very conscious about the quality assurance of the pathway of the screening programme. So, the benefits of the bowel screening programme are twofold. It's to identify people with early bowel cancers and then treatment at an earlier stage before they're symptomatic, because we know that the outcome for that person is better. But the harms of that are that, actually, if you like, we're inviting 290,000 people per year to have a screening test, so, a bowel screening test—actually, there are not a lot of harms in that; it's just not the nicest thing to do. It's not the most pleasant, let's face it. But the main harm in this is that, actually, those who are identified as positive have a wait, they're worried. Suddenly, they've got a potential cancer diagnosis. About 13 per cent of those who get called for colonoscopies will have a cancer diagnosis. So, that's a worrying time, which is why we—

Thirteen?

—thirteen—which is why we want it as short as possible. And then the colonoscopy procedure, you have to take some bowel preparation before, which, again, is not the most pleasant thing to do, and the colonoscopy procedure has a very small risk of—sorry—

There's a one in a 1,000 risk of perforation.

—perforation. So, the harms aren't great here, but actually it's the balancing then in terms of the whole population, because we're going to go and invite somebody to that.

So, in very general terms, with any screening programme, the reality is that screening can harm people. It does good, and the whole point is that we implement programmes where we believe that the benefit, the good, exceeds the potential harm. The harm can be in very specific terms, as has been described for a particular programme, or it could be as non-specific as the reality that any test will, for example, identify some people who might have a positive result, but then, on investigation, turn out not—. And we've heard that the identification rate is about 13 per cent, so that's an awful lot of people who we are able to give assurance to, and that's great, but they have been put through a process of concern and anxiety and so on.

The reverse of that, of course, can also happen. Sometimes, a test, however sensitive we set it at, will miss some people who subsequently turn out to have the condition of interest. That then becomes, in a sense, a retrospective concern for the individual who asks themselves, 'Well, how is that that I couldn't have that recognised earlier?' So, these are the things that we have to weigh up, the relative harms and benefits.

Chair, if I may, very briefly, then. I'm going back to this, and I understand completely the issue around capacity in the system and the pragmatic reasons why the setting is 150. Are we, in any sense, and what analysis is there, of setting that scenario up for quite a few people across Wales in terms of the fact that it's quite a high level of sensitivity of 150, for that very reason that you're saying, 'I've been through that test and now I have a positive result way down the line?' Bearing in mind it's a lot higher than everywhere else in the UK.

Well, we're starting at 150, England will be starting at 120 and we acknowledge that Scotland have already started at 80. Our priority, as we stand here now and look forward, is to implement and then to implement both the reduction in the FIT threshold and the age extension down to 50. And we, as a public health service, recognise, not just with this, but with other programmes, that down the line, looking back, there will always be, potentially, people who've missed an opportunity, and that, I'm afraid, without being too unkind, is the reality.

Yes. Absolutely. Neil, we've partially covered the issue, but the floor is yours.

Okay. Some of our witnesses have suggested that NHS Wales should consider new ways of working to meet the improvement programme for these diagnostic targets, such as regional service delivery models. Can you give your opinion on that? I know you've partly done this in answer to earlier questions.

I think the health boards are working really hard, and they are developing alternative ways of addressing their issues. There certainly are some health boards that are working quite closely with their neighbours. Personally, I think it would be really good for the national programme to look at alternative service models to see how we could best deliver endoscopy services for the people in Wales, and I think they probably will need to think a bit differently.

You were very clear in your earlier evidence that this is a programme that should be nationally driven.

Yes.

Absolutely. This can only be solved as a whole system. Now, there'll be different ways, and different parts of Wales that'll lend themselves to slightly different approaches, but it has to be part of a whole nationally directed systems approach to the resolution of.

Can I go on to ask whether you plan a public awareness campaign to accompany the national roll-out of FIT and how the pilots in England, and the roll-out in Scotland, provide evidence about the need for this public awareness campaign?

I think, as a programme, we always take every opportunity to raise awareness of the programme, so it will be important that we do have a public awareness campaign around FIT. I think it's also important that we get the timing of that public awareness campaign right. What we wouldn't want to do is for people to withhold completing their original test kit to wait for a new one. So, we are developing a communications strategy at the moment; we're looking at how best we can achieve that. But, yes, we are planning to raise public awareness.

I've been quite surprised by what I think is a pretty low take-up of the option to undertake the screening. I do it myself on a regular basis; I can't understand why nobody else would want to.

Too much detail. [Laughter.]

We're hoping that the Chair has also—[Inaudible.]

Yes. Have done. Box ticked. [Laughter.]

But you're absolutely right; uptake needs to be improved. FIT is obviously going to give us some benefit in terms of improved uptake, it only being one test, and we know from the pilots that it has improved uptake by 8 to 10 per cent. And perhaps the more important thing is that it's also reduced the inequity gap; the gap between the poorest and the richest is reduced with FIT, so that's encouraging, but we still need to work really hard to improve it even further.

And we're building on quite a few years' experience working particularly with the cancer charities—and you've had them in this morning. We've worked with all of them and we continue to work with all of them on various campaigns to encourage uptake. We've found those really fruitful and we will continue to learn and build together on those experiences as we go forward.

Good. Julie next. Sorry, have you finished, Neil? Yes. Julie, some of your issues are partially covered, but the floor is yours.

Yes. You have referred to the inequalities in take-up and consequently treatment. Could you tell us a bit more about what that gap is and where the inequalities do exist?

We know that the people who are less likely to complete our test kit are men from poorer areas, and the gap between the poorest and the richest in terms of uptake is wider for the bowel screening programme than it is for the other cancer screening programmes, which is a concern, but also quite helpful. We've generated a lot of intelligence over the last few years, so that we now know the people who don't do our test kit, so we're able to target interventions at those cohorts of people. And that's what we're currently doing. So, it is a concern and, like I say, FIT is going to help us, but we're not going to be able to rest assured that that's all we're going to need to do. We've got a lot of work to do in terms of improving uptake.

The work that we've been doing with the charities more recently is quite interesting, particularly the Cancer Research UK study that we did earlier on this year, and that's demonstrated that there's a shift. It's no longer as much about raising awareness of the screening programme, it is about changing attitudes. So, the screening programme is 10 years old now, and people generally know that we're around. There's always some work to do in terms of raising awareness, but this study particularly demonstrated that it is about attitudes and people's reluctance to complete the test kit, so generating some useful information that we can use to plan for interventions.

So, how do you target that?

Again, working with our charity colleagues—and we're working much more closely with them more recently—we need to undertake further research to look at what exactly the barriers are, particularly with men and particularly in the younger age range with age expansion in mind. We don't know a great deal about what's going to affect uptake for the 50 to 60-year-olds, so we need to do some work to identify ways that we can address that issue, but there are other things. Some things that we have done previously that were run as pilots that we found effective haven't yet been implemented and we're working on that this year—things like endorsement flyers sent out three days after the test kits seem to be quite beneficial, so we're planning to implement that later on this year, and various other things.

So, building on the work that we've done over the last few years with our cancer charity colleagues, we're going to be able to implement some of those interventions. But I think the particular piece of work that is going to be really helpful to us is the work with primary care, so working with local communities, with people who actually know the demographics of their communities and are able to advise us on what interventions are likely to work in those groups.

And we'll also learn from the other interventions that we've done across the other cancer screening programmes. So, again going back to Cervical Screening Wales, we're about to shortly run a targeted social media campaign that we've undertaken, again more widely with screening over the summer, and that's using different voices. So, it's not us saying that you will, it's the different trusted people in the community, and very much targeting that, so it's coming through to the population that we want to target, which are the men here, really, from the poorer backgrounds.

And is that gap closing?

We haven't seen evidence of it closing yet, but it's quite difficult. We're quite keen to implement one significant intervention at a time and then evaluate it properly, rather than do lots of things at the same time and not know what's working. So, we've got a carefully worked-out plan of work for the next 12 months and there'll be one significant project undertaken in each area that's evaluated properly, before we move on. So, hopefully, it won't be too long before we can see that there has been an improvement. But, at the moment, we haven't seen the inequity gap reduce. 

But the uptake has shown a general improvement, which we need to keep sustainably, but it's moving in the right direction.

Yes. The last couple of months, we've seen a significant improvement. Obviously, we can't take too much out of two months' worth of data, but we are expecting to see an improvement.

Okay, Julie?

Shall I—?

No, we've got Angela waiting to fire.

Actually, I just want to ask you a question about endoscopy. We're obviously doing a one-day inquiry into endoscopy services, and the focus is on the prevention of bowel cancer, but, of course, there are, I think, 13 different types of endoscopy out there. So when we look at the—or had references in our previous statements—witness interviews about the 2017 national endoscopy services, and you've made comments about endoscopy services, and some health boards are providing them and some aren't: do you also have any breakdown about whether the gaps are in, say, colonoscopies versus upper endoscopies versus all the other mainly unpronounceable endoscopies that are out there? Because I really want to try and drill down into where the blocks are.

To coin a phrase.

To coin a phrase. I wish I hadn't said that. [Laughter.]

Obviously, for screening we're only—I wouldn't say 'only interested', but our remit is colonoscopy, so the lower gastrointestinal things. We pick things up because we go around, we talk to health boards, we have a general understanding of what the challenges are. But I think that would be a really important part of the baseline scoping work for this national programme, to look at where the bottlenecks are. My understanding is that the biggest issue is with lower GI endoscopy, but that may not be the case for every health board.

Okay. So, the endoscopy national survey 2017—you're not overly aware of it. I mean, I'm not aware of—

I'm aware of it, yes.

But not the detail of—

We pick up things. I've read a summary and I know—

I'm going to fire that question at the health boards, anyway—

But again, I think that's got to be the fundamental starting point for the national programme, to do a really comprehensive baseline review, including all endoscopy services, not just colonoscopy.

Because am I right in saying that these, the 18 and the 20 specialists—they will do all of the endoscopies, or is that just 18 and 20 in colonoscopy?

No. The 18 are screening colonoscopists, so they obviously work in the symptomatic service as well, so they do do other endoscopy. They will be doing some upper GI procedures as well, but those are our screening colonoscopists. The 20 nurses will predominantly be doing uppers. Only three of them do colonoscopy, and they don't do colonoscopy for the screening programme.

And then I'm assuming that other things that are very dedicated like arthroscopy—that's probably just with orthopaedics, and they get on with that. So that won't be the endoscopy services per se.

No, but there are some other services that will impact on endoscopy services. There's the hepatology side of the urology. Sometimes they share units. These are all things that need to be considered.

Thank you. I don't have any other questions.

Okay. Happy? Any other questions? There we are. You appear to have floored the membership of this committee, so—

Maybe you could invite us and we'll start again. [Laughter.]

We will leave it there. Thank you very much indeed for your attendance.

Thank you. Nice to meet you all.

And obviously also for the written evidence beforehand. Obviously, as you will know by now, you will receive a transcript of the discussions so you can verify that that actually was what you said, okay. So, thank you very much indeed. For my fellow Members, we'll have a break now till 10:45. Thank you.

Diolch, Chair. Welcome, Tom. In regard to the different thresholds for the FIT test across the UK, the fact that Wales is at a higher level of 150 compared to Scotland and England, do you feel that that is ambitious for Wales, or is it manageable for Wales? And do you think that it's at the right level?  

Would it be possible just to set the scene a little bit for the wider picture of cancer services? It is relevant, because it's around diagnostic services and the performance of the current service. So, what we know is whilst patients have a good experience of cancer when they get into the system and are diagnosed with cancer, we know that other outcomes are not as good in Wales and the rest of the UK compared to other similarly developed countries. We participated in research to understand the reasons—

Sorry, through the Chair, and obviously we know, but for those that are watching, could you say who you are or the 'we' you're using? 

So, I'm talking about the Wales Cancer Network, which is on behalf of NHS Wales cancer services, effectively. Thank you. 

So, the cancer network has worked very closely with something called the International Cancer Benchmarking Partnership, which is a group of developed countries from Canada, Australia, Scandinavian countries to the UK, and it's looked at saying, 'If our outcomes in terms of survival are worse, what are the causes of those outcomes?' And what we think a stage a diagnosis is is very important, and possibly access to care in elderly patients as well. But the modules of that work have looked at the different components of the contributions to why the outcomes may be poor. We know that our patients are not always aware of the signs and symptoms of cancer but, more importantly, we think in Wales they're less likely to act on those signs and symptoms, so, to present themselves to their GP. 

We also know that primary care GPs in Wales are less likely to instigate investigations for signs and symptoms of cancer, and that is in no way a criticism of primary care, with their limited resources and time. What it is is access to diagnostic tests that is putting them off referring patients—

Sorry, Chair, if I can just ask around that. This has cropped up previously in other areas. So, you are saying that's evaluated. How is that evaluated, and how do you know that it's lack of diagnostics that's making that—[Inaudible.]—rather than lack of awareness?

So, what the cancer benchmarking partnership did was give GPs in all the jurisdictions vignettes. So, they gave them stories of patients with potential signs and symptoms, and they said, 'What would you do on the basis of a patient who's 55, presenting with a cough, or indigestion, or bleeding per rectum?' And in Wales, similar to the rest of the UK, but more exaggerated in Wales, was the fact that primary care were less likely to instigate investigations for those patients. And then, they correlated the willingness of primary care to investigate, given the signs and symptoms, with outcome and survival. And there was a direct correlation between access to diagnostic services and survival from cancer. 

And you may be aware, and others will probably refer to this today, that whilst we do need to do more in terms of awareness of signs and symptoms of cancer, and education of both patients and healthcare professionals in terms of recognition of those signs, a very important paper was published yesterday to say that after patients present with signs and symptoms of colorectal cancer, of lower gastrointestinal cancer, they spend longer in the healthcare system before starting treatment than any of the other jurisdictions. In fact, Wales was chosen as a reference country to compare to other countries. So, we know that, at the moment, the system is not working as well as it can. We welcomed very much the discussion last week around the single cancer pathway, which we'll come on to. So, your original question was: how can we do things differently?

Well, actually, it was directly—and we'll come to that later—around: are we being ambitious enough in Wales in terms of the threshold of 150? And my next question around that, and I'll place it now really, is: quite frankly, is that capacity based, is it pragmatic, and is it system based, rather than patient centred?

We welcome the introduction of FIT per se, because we think it's a better test, it's a more accurate test—it's a quantitative test rather than a qualitative test, such as the one we've had before, and because it's easier to perform, we think that will improve uptake of screening, just FIT in itself. But, no—

So, in regard to the 150 versus the 80?

It's been set at that threshold to be roughly equivalent in terms of its efficacy as the previous test. And that is on the basis that the capacity in the system is not there to lower that threshold. And we do welcome the announcement that we will, as a system, work towards a lower threshold, although I think it's fair to say, on behalf of the cancer network, who are representing services in Wales, we would want to see that happen sooner than 2023. 

Is there a radical need for a redesign of this system? 

Yes, and I think the system recognises that. I think, at the moment, there isn't the system coming together—and that's Government, NHS Wales, the service—to look at how we sustainably provide greater capacity to meet the forecast demand of the future. Now, the demand has been going up for endoscopy services at about 8 per cent or 9 per cent per year for the last five years, and I don't think, as a system, we've yet to come together to prepare for that incremental change. We now are really excited. This is a cancer that is potentially curable if caught early. We have an evidence-based intervention in the screening services of the use of FIT. That will diagnose more patients at an earlier stage. 

So, I think it is fundamental that, No. 1, we do increase the activity of endoscopy services, but then, in the medium to longer term, we do that in a more sustainable way. And that's got to be via some form of co-ordinated national programme of work. And that's got to look at the infrastructure. It's got to look at the service models—how much do we do locally—

How is that national approach, that directed approach that you're outlining for us now, which is very important, going to take place? How is that shaping up? Is that in situ at the moment, or in the planning?

It's a little bit in between. We've had an endoscopy implementation group, which has been clinically led, but I don't think has necessarily had the authority and mandate to ensure that things happen—

So, you'd like to see that—

Well, I think now—

—far more.

Yes. There is a more directive approach the Welsh Government are taking at the moment, and there's a workshop on 12 December where people are going to come together and look at the issues around how things are better planned for the future, which is about proper, really robust capacity and demand modelling work, then looking at service models of care, but then, at the same time, looking at the workforce and how we build a sustainable workforce. And I think that, at the moment, we'd all agree that that has happened to a certain degree in individual organisations, but not as a nationally co-ordinated programme.

Finally, then, in regard to the age range, the target would be that, by 2023, we are fully encompassing 50-year-olds within that test. Is that also, in terms of our capacity, a sustainable target?

It should be a sustainable and achievable target. It is certainly something that we should be aspiring to, and ideally before 2023.

Coming back to your original question, England are setting a target for FIT, you've probably heard, of 120, and Scotland are at 80 already. I think we should be working more towards that level of 80. But we must put the capacity in the system to be able to turn on the tap a little bit more for people to come more into the system. We shouldn't be afraid of people coming into the system; that's what we've encouraged primary care to do, to refer more patients.

And in terms of achieving those targets earlier, do you think there is scope for that if this new, more directed national approach—?

I believe so. I think we should work as hard as possible to ensure that that happens earlier. So, yes, I think it should. The service would say that we should be doing that before 2023.

Okay.

Okay. Helen Mary has got a supplementary.

This is quite a big question, but you mentioned in response to Rhianon Passmore that there are parts of the service that are better placed in terms of their capacity to achieve what we're setting out to do and to perhaps, as you've said, be able to achieve things earlier. Could you perhaps tell us about what's working well, where? Because it may be that we can learn some lessons from that that could, as part of a more national approach, be rolled out.

I suspect that others speaking today will talk a little bit more in an informed way about the variation in local services. I think that people coming after me will talk about JAG accreditation, and that is a basis for quality of care, but also timeliness of care, and only certain units have achieved that.

What I would say more at my level would be is that the principle should be that, if some parts of a service are working better, organisational boundaries shouldn't be a barrier to patients receiving earlier access to diagnostic tests.

Okay.

Okay. Angela, I realise some of the issues there have been covered, I think, but the floor is yours.

I think that most of the questions I wanted to ask have been covered, except perhaps the issue of insourcing and outsourcing endoscopy services. Do you have a view on that and its long-term sustainability?

I think that, generically, in terms of diagnostics in the short term, we just need to do more activity, and if that means insourcing work, using various forms of initiatives to achieve that activity, it's the lesser evil. There is no reason, though, why we can't build in Wales our own internally-sourced diagnostic services, both endoscopy and other diagnostics. And I think we have to explore models of work. A group of us went to Denmark to see how their diagnostic systems work, and they have achieved an improvement in outcomes—similar countries, 5 million people, primary care systems, national health service, et cetera. And they have invested in different models of primary and secondary care working together, exploring regional diagnostic pathways and new pathways into diagnosis. So, I think we need to be open to working in those new ways.

Where services, though, are working better in Wales—I'm sure others will say—in Hywel Dda at the moment, they seem to have high-quality, rapid throughput for endoscopy. So, is that something to build on, on that model? So, I'm aware that there are various proposals around regional diagnostic hubs, for instance, and I think we need to pilot, but robustly evaluate how useful those services are.

Can I ask you a completely random question about the whole issue of diagnostics? Is there a point where you think we don't go back any further? Where should we stop? Where should we stop with calling people forward for diagnostic—?

Do you mean at the risk of over, almost, investigation?

Yes.

I think we're a long way from that at the moment. So—

Fifty, 40, 30—?

Thirty what?

Age.

Oh, sorry. Sorry, in terms of age. No. No, I think there's definitely an element of prudency there. We mustn't invite people with a very, very low threshold of having any illnesses. There is something around targeting populations. So, the age of 50 is evidence based. People have talked about lowering the age to 45. I don't think there is robust evidence to support that, but that's probably a direction of travel we'll go to. But if a patient has a family history of cancer, if one of their parents had a cancer at an early age, there is a rationale to looking at those individuals and families potentially five years before that index case. There are genetic syndromes that lead to a much higher risk of colorectal cancer. But, no, I think there's absolutely a risk—we should not be inviting everybody to, at the moment, what is a relatively unpleasant test, a colonoscopy. So, we do need to look at alternative technologies as well to screen this population, and obviously genomics and our gene profiles are things that are going to come through. We're already exploring and piloting in Wales, in Swansea, the use of a blood test to help select out those patients who need the diagnostic tests.

So, there is some sort of diagnostic centre somewhere that says, 'Oh, well, you know, perhaps if you've—.' I don't know; I'm just using—. Because I don't know what the tests would be, but perhaps if you're a smoker, you've got more chance, therefore we'll call smokers forward, or—. There is somebody looking at all of that, is there, and crunching that data?

Yes. I think—. Obviously, the main organisation for evidence-based guidelines is NICE and we follow their guidance, or at least we adopt or justify the following of their guidance. I don't know if somebody else is going to ask, but there is use of FIT not in screening services but in symptomatic patients. We think that will have a useful role, we're just not quite sure of its exact role at the moment. But, at the moment, NICE guidance would suggest referring through for a 3 per cent chance of having a colorectal cancer, even if you have those alarm symptoms of bleeding PR, abdominal pain. It may be that the use of tests such as FIT might be able to triage some of those patients and put them into such a low-risk category that we don't put them through a colonoscopy.

So, you might think—. So, this would be at GP level, would it, would you say, where somebody comes to their GP and says, 'I'm feeling—', 'I've got pain' or whatever it is, and then—?

Well, it's a really good question. I think the tests should be done in primary care, but primary care need the support of secondary care clinicians, because a lot of these patients won't have cancer but they'll have other significant pathology and we can't just leave them in primary care alone to manage a whole new cohort of patients with serious disease. So, I think the test is done in primary care but those tests follow the referral into secondary care, but it may be that those patients are seen and evaluated before going straight to an endoscopic test.

But seen, for example, by, say, a generalist secondary care—

Well, still a gastroenterologist, but not necessarily having a colonoscopy, so—. We've developed the single cancer pathway and there's a lot of work around that and we're really supportive of the announcements made and the investments coming into the service for increased diagnostics. Part of that is to say patients don't need to be—some patients don't need to be—assessed before they go straight to test, but it may be, with the use of a FIT test, if there's more chance of a diagnosis of inflammatory bowel disease rather than cancer, that some of those may not go straight to a test. 

Thank you very much.

Okay. Julie, you had a supplementary on this.

I just wanted to ask—we were told in evidence earlier on that men are less likely to come forward for the test and people from less well-off areas are less likely to come. Have you got any comments about how we tackle that issue?

I think there are various approaches we're trying. We're working with CR UK in terms of they've invested in what are called GP facilitators to come out and have a look at the evidence in clusters and primary care practices to see who is coming forward for screening. We certainly recognise those problems, and, particularly, areas of deprivation that lead to a 15 per cent variation, even in Wales, of uptake.

Fifteen?

Yes. So, ranging from 43 per cent up to 60 per cent in terms of uptake and screening tests. I don't think we know the answer, though, to how we change that. Scotland are looking at multi-media messages to deprived communities. So, I think this is an area ripe for research, piloting, evaluation of new practices, but we certainly must recognise that as a really real problem. I think we need to do more research into that area and carefully evaluate. It's very easy to knee jerk to a response of awareness campaigns. They are expensive and we need to do them in an evidence-based way.

Okay. Dawn.

Thank you, Chair. I think you've answered this in part in some of the earlier questions, but I wanted to ask you about the diagnostic workforce and, obviously, the capacity aspects of that. You've said in your paper that it was the shortage of gastroenterologists and non-medical endoscopists that seemed to be the problem. So, what will a future sustainable diagnostic workforce look like, in your opinion?

Well, I think we need to do a little bit more to exactly describe that—what it does look like. I think that, at the moment, it would be recognised that consultant endoscopists, be they gastroenterologists or surgeons, will do endoscopy and will do it very well. Some of them are very experienced and experts in that. But they will also be doing a whole range of other activities as well. Non-medical—particularly nurse—endoscopists are able to commit more time to undertaking endoscopic services. They are a little bit more flexible in terms of their job plans and their timetables about when they do that, and we've shown through quality assurance systems that they can do it just as well as medical practitioners.

What I don't think we have is a national programme of training to get the workforce up to speed to meet the forecast levels of demand. I think we need to do more work around that capacity and demand modelling to say what does a really good service need in three to four years' time to be able to introduce the screening at the right thresholds, to meet the demand that we're putting on primary care to refer these patients through. I think that that can probably only be achieved in a national co-ordinated programme. We look at the National Imaging Academy, and it's probably one of the best things that Wales has done in terms of improving the workforce for diagnostics, and there are some lessons there about how that was developed and how that might work within endoscopy services.   

It's chicken and egg, isn't it? We're going to have this new, improved screening system, which we assume is going to bring an awful lot more people through, but we don't know how many. So, when you want to plan your workforce, you need to have some idea of how many you need. How do you think we might start to address that?

Well, I think it is complex, because, you know, we've talked about predicting forecast demand, and pressures from screening and from symptomatic patients, and lowering thresholds for referral through. We've also talked about some technologies that might reduce the demand on services. But I think we know that, over the next three to four years, demand will rise, likely by 9 per cent, 10 per cent per year for the foreseeable future. At the moment, we do not have the infrastructure, the service models or the workforce to deal with that, and that needs to be a joined-up programme of work.

So, planning for about a 10 per cent increase then, really.

Yes.

Yes, okay. All right. Thank you, Chair. 

Rhianon, you've got a supplementary on this point.

Briefly, in that regard, then—. So, we're talking again about a national programme in terms of capacity and demand. So, who is liaising, for instance, with Health Education and Improvement Wales and diagnostic centres that you talked about in regard to that training programme? I would like to feel confident that that is occurring so that we can develop the cohort and the capacity across Wales that we know we will need.   

So—