|Dai Lloyd AM||Cadeirydd y Pwyllgor|
|Darren Millar AM||Yn dirprwyo ar ran Angela Burns|
|Substitute for Angela Burns|
|Dawn Bowden AM|
|Helen Mary Jones AM|
|Jayne Bryant AM|
|Lynne Neagle AM|
|Aidan Rylatt||Cynghorwr Polisi a Seneddol, Ymddiriedolaeth Hepatitis C|
|Policy and Parliamentary Adviser, Hepatitis C Trust|
|Delyth Tomkinson||Nyrs Glinigol Arbenigol Hepatoleg, Bwrdd Iechyd Lleol Prifysgol Caerdydd a’r Fro|
|Clinical Specialist Nurse Hepatology, Cardiff and Vale University Local Health Board|
|Dr Brendan Healy||Cadeirydd y Blood-Borne Viruses Network, Ymgynghorydd Microbioleg a Chlefydau Heintus ac Arweinydd Cenedlaethol ar Hepatitis|
|Chair of the Blood-Borne Viruses Network, Consultant in Microbiology and Infectious Diseases and National Lead for Hepatitis|
|Dr Chinlye Ch’ng||Gastroenterolegydd Ymgynghorol, Bwrdd Iechyd Lleol Prifysgol Abertawe Bro Morgannwg|
|Consultant Gastroenterologist, Abertawe Bro Morgannwg University Local Health Board|
|Dr Giri Shankar||Prif Ymgynghorydd ar gyfer Diogelwch Iechyd a Rheoli Clefydau Trosglwyddadwy, Iechyd Cyhoeddus Cymru|
|Lead Consultant for Health Protection and Communicable Disease Control, Public Health Wales|
|Dr Jane Salmon||Ymgynghorydd ar gyfer Diogelwch Iechyd, Iechyd Cyhoeddus Cymru|
|Consultant in Health Protection, Public Health Wales|
|Dr Mair Hopkin||Cyd-gadeirydd, Coleg Brenhinol yr Ymarferwyr Cyffredinol|
|Joint Chair, Royal College of General Practitioners|
|Dr Peter Saul||Cyd-gadeirydd, Coleg Brenhinol yr Ymarferwyr Cyffredinol|
|Joint Chair, Royal College of General Practitioners|
|Dr Ruth Alcolado||Dirprwy Gyfarwyddwr Meddygol, Bwrdd Iechyd Lleol Cwm Taf|
|Deputy Medical Director, Cwm Taf Local Health Board|
|Dr Stephanie Perrett||Nyrs Arweiniol ar gyfer Iechyd a Chyfiawnder, Rhaglenni Diogelu Iechyd, Iechyd Cyhoeddus Cymru|
|Lead Nurse for Health and Justice, Health Protection Programmes, Public Health Wales|
|Gavin Hardcastle||Nyrs Glinigol Arbenigol Hepatitis, Bwrdd Iechyd Lleol Aneurin Bevan|
|Hepatitis Clinical Nurse Specialist, Aneurin Bevan Local Health Board|
|Lisa Turnbull||Cynghorwr Polisi a Materion Cyhoeddus, Coleg Nyrsio Brenhinol Cymru|
|Policy and Public Affairs Adviser, Royal College of Nursing Wales|
|Rachel Halford||Prif Weithredwr, Ymddiriedolaeth Hepatitis C|
|Chief Executive, Hepatitis C Trust|
|Stuart Smith||Cyfarwyddwr, Ymddiriedolaeth Hepatitis C|
|Director of Community Services, Hepatitis C Trust|
|Bethan Kelham||Dirprwy Glerc|
|Gareth Howells||Cynghorydd Cyfreithiol|
|Tanwen Summers||Ail Glerc|
|1. Cyflwyniad, ymddiheuriadau, dirprwyon a datgan buddiannau||1. Introductions, apologies, substitutions and declarations of interest|
|2. Hepatitis C: Sesiwn dystiolaeth gydag Ymddiriedolaeth Hepatitis C||2. Hepatitis C: Evidence session with Hepatitis C Trust|
|3. Hepatitis C: Sesiwn dystiolaeth gyda Choleg Brenhinol yr Ymarferwyr Cyffredinol a'r Coleg Nyrsio Brenhinol||3. Hepatitis C: Evidence session with Royal College of General Practitioners and Royal College of Nursing|
|4. Hepatitis C: Sesiwn dystiolaeth gyda'r Rhwydwaith Firws mewn Gwaed||4. Hepatitis C: Evidence session with the Blood-Borne Viruses Network|
|5. Hepatitis C: Sesiwn dystiolaeth gydag Iechyd Cyhoeddus Cymru||5. Hepatitis C: Evidence session with Public Health Wales|
|6. Is-ddeddfwriaeth mewn perthynas ag iechyd a gofal cymdeithasol||6. Subordinate legislation relating to health and social care|
|7. Papurau i’w nodi||7. Paper(s) to note|
|8. Cynnig o dan Reol Sefydlog 17.42 i benderfynu gwahardd y cyhoedd o weddill y cyfarfod hwn||8. Motion under Standing Order 17.42 to resolve to exclude the public from the remainder of this meeting|
Cofnodir y trafodion yn yr iaith y llefarwyd hwy ynddi yn y pwyllgor. Yn ogystal, cynhwysir trawsgrifiad o’r cyfieithu ar y pryd. Lle mae cyfranwyr wedi darparu cywiriadau i’w tystiolaeth, nodir y rheini yn y trawsgrifiad.
The proceedings are reported in the language in which they were spoken in the committee. In addition, a transcription of the simultaneous interpretation is included. Where contributors have supplied corrections to their evidence, these are noted in the transcript.
Dechreuodd y cyfarfod am 09:31.
The meeting began at 09:31.
Allaf i groesawu pawb i gyfarfod diweddaraf y Pwyllgor Iechyd, Gofal Cymdeithasol a Chwaraeon yma yng Nghynulliad Cenedlaethol Cymru? O dan eitem 1, cyflwyniadau, ymddiheuriadau, dirprwyon ac ati, a datgan buddiannau—mae'n debyg, achos hyn, y dylwn i fod yn datgan heddiw fy mod i yn feddyg teulu yn Abertawe. Wrth gwrs, mae cwpl o dystion nes ymlaen—dwi'n eu nabod nhw yn bersonol o ran fy ngwaith bob dydd. Ymhellach at hynny, oes yna unrhyw ddatgan buddiannau gan unrhyw un arall? Nac oes.
Croeso i bawb, felly. Rŷn ni wedi derbyn ymddiheuriadau oddi wrth Angela Burns, a bydd Darren Millar yn bresennol fel dirprwy. Croeso eto i Darren. Rŷn ni hefyd wedi derbyn ymddiheuriadau oddi wrth Neil Hamilton. Hefyd, ddylen ni gofnodi ein diolch i Julie Morgan a Rhianon Passmore am eu hamser a'u hymroddiad tra oedden nhw ar y pwyllgor yma. Maen nhw wedi symud i diroedd brasach, efallai, ac mae'n hyfrydwch felly i fi groesawu yn eu lle Jayne Bryant a David Rees, ond rŷn ni hefyd wedi derbyn ymddiheuriadau oddi wrth David Rees achos, yn rhinwedd ei rôl fel Cadeirydd pwyllgor arall, nid yw yn y wlad ar hyn o bryd.
Gallaf bellach egluro i bawb yn naturiol fod y cyfarfod yma yn ddwyieithog. Gellir defnyddio clustffonau i glywed cyfieithu ar y pryd o'r Gymraeg i'r Saesneg ar sianel 1, neu i glywed cyfraniadau yn yr iaith wreiddiol yn well ar sianel 2. Dŷn ni ddim yn disgwyl larwm tân. Os byddwch chi'n clywed larwm tân, neu hyd yn oed yn gweld tân, dylen ni ddilyn cyfarwyddiadau'r tywyswyr. Diolch yn fawr.
I'd like to welcome you all to the latest meeting of the Health, Social Care and Sport Committee here at the National Assembly for Wales. Under item 1, introductions, apologies, substitutions and declarations of interest, I should declare that I am a general practitioner in Swansea. Of course, a few of the witnesses later on—I do know them personally in terms of my day-to-day work. Further to that, are there any other declarations of interest? No.
I welcome you all, then. We have had apologies from Angela Burns, and Darren Millar will attend as substitute. Thank you, and welcome again, Darren. We've also had apologies from Neil Hamilton. We should also record our thanks to Julie Morgan and Rhianon Passmore for their time on the committee and their commitment. They have moved on to a better place, perhaps. It is therefore a pleasure to welcome Jayne Bryant and David Rees in their stead, but we have also had apologies from David Rees, because, in his role as Chair of another committee, he isn't in the country currently.
I'd like to remind you that this is a bilingual meeting. You can hear the original language on channel 1 or amplification on channel 2. We are not expecting a fire alarm, so if you do hear the fire alarm, or see a fire even, then we should follow the directions of the ushers. Thank you.
Rŷn ni'n symud ymlaen, felly, yn syth i eitem 2. Mae'r pwyllgor yma yn cynnal ymchwiliad undydd ar lid yr afu, math C, hepatitis C. Rŷn ni wrthi drwy'r dydd efo gwahanol dystion yn casglu gwybodaeth, a dod i gasgliadau. Felly, o dan eitem 2—mae hon yn sesiwn dystiolaeth gydag ymddiriedolaeth llid yr afu C, hepatitis C, ac i'r perwyl yma, mae'n hyfrydwch i groesawu Rachel Halford, prif weithredwr Ymddiriedolaeth Hepatitis C; Stuart Smith, cyfarwyddwr gwasanaethau cymunedol Ymddiriedolaeth Hepatitis C; ac Aidan Rylatt, cynghorwr polisi a materion seneddol, Ymddiriedolaeth Hepatitis C.
Croeso i'r tri ohonoch chi. Diolch yn fawr am y dystiolaeth ysgrifenedig ymlaen llaw. Yn ôl ein harfer, rŷn ni'n mynd yn syth i mewn i gwestiynau. Mae'r meicroffonau yn gweithio yn awtomatig; does dim eisiau cyffwrdd â dim botymau o gwbl. Wedyn, gyda chymaint â hynna o ragymadrodd, awn ni'n syth i mewn i gwestiynau. Helen Mary Jones sy'n dechrau.
We move on, then, straight away to item 2. This committee is undertaking a one-day inquiry into hepatitis C. We are throughout the day inviting various witnesses to gather evidence, and then to come to conclusions. So, under item 2—this is an evidence session with the Hepatitis C Trust, and to that end, it's great to welcome Rachel Halford, chief executive of the Hepatitis C Trust; Stuart Smith, director of community services, Hepatitis C Trust; and Aidan Rylatt, policy and parliamentary adviser from the Hepatitis C Trust.
Welcome to the three of you. Thank you very much for the written evidence that you sent us beforehand. As usual, we'll go straight into questions. The microphones work automatically, so you don't have to touch any buttons. And with those few words, we'll go straight into questions from Helen Mary Jones.
Thank you, Dai. I'm going to start with quite a broad question. Could you give us an outline of your views on the current state of play with regard to hepatitis C, and progress in Wales towards the elimination target by 2030?
Just to start off by saying thanks for inviting us to come along today; we really appreciate it and we're really pleased that the health committee is undertaking this inquiry. I think the big breakthrough in Wales, as elsewhere, really, was the arrival of the direct-acting antiviral treatment for hepatitis C back in 2014. That was a hugely important development—really provided the basis for the global elimination goal.
We were very supportive of the approach that was taken in Wales initially in relation to the treatments. There were no restrictions placed on the number of people who could access those treatments. I think that approach contrasted very favourably with the approach that was taken in England, for example, where there was a restriction placed on the number of people who could access them each year. That was something that, obviously, we as an organisation were very concerned about because it meant patients were having to wait for treatment despite being sick and in danger of developing serious liver problems. I think that's something that Wales can rightly be very proud of.
However, since the treatment targets were introduced in 2015, they have been missed each year in Wales. So, that's something that we would be concerned about—particularly, they fell back last year compared with the year before, so that's quite concerning. I think that shows that there's a really pressing need to find and diagnose patients and link them in with treatment. I think that's certainly the biggest challenge that we would identify for Wales and what needs to be the biggest priority.
So, in terms of how Wales is progressing towards elimination, I know there was some modelling done quite recently, and that showed that elimination would be achieved one or two years after the 2030 target if the treatment targets were being met. Obviously, the treatment targets are not currently being met, so on the current rate it would actually be missed by quite a considerable distance; we're talking sort of 2040. So, there's certainly more action needed if elimination is going to be met by 2030.
Why is it that the targets aren't being met? Is it difficulty in identifying hepatitis C patients, I assume?
There's a mixture of issues, and I think that we'll come on to them later.
Sorry, just to explain, we did divvy the questions up, so if you ask a question and look at someone and someone else answers it, please don't think, 'Oh, how rude', we just thought we'd divvy them up so you get to hear from all of us.
There are many issues as to why they're not being met. There—. Initially—. So, the price of the drugs initially—so, there's an amount of money that you the Assembly Members had passed down to each of the health boards. The drugs—. The cost of the drugs has decreased, so actually there's a surplus, but the health boards aren't—they're not even hitting their targets. I'm not quite sure really as to how these have been set and who they are accountable to in terms of hitting these targets—in fact, achieving more than. We're going to come on and talk about—I think there are some questions coming up around finding the undiagnosed, about the marginalised communities; there are a lot of people left to be found.
I was just interested in just a broad statement about why you thought they weren't being met. It's mainly about identification, rather than money, is the point.
Although I think the point we would make is that obviously money can help with that. So, I think—we might discuss this a little more later, but health boards could be doing things like investing in staff who can go out into the community and be doing testing and that would help with finding these undiagnosed patients. But definitely the main point that we would make is it's finding and diagnosing.
In your written evidence, you've referred, obviously, to what's going on in other UK nations, and just touched on the situation in England, but you also suggested that there are more ambitious targets being set elsewhere. Can you just throw a bit more meat on the bones in terms of that situation?
So, in terms of when you look at Scotland, England and Wales—and I have to say, first of all, Wales has had some incredible work, and that is not to mitigate any of this. You've got some incredible leads—Brendan Healy is phenomenal across the UK, as are some of your nurses. However, in Scotland, they're about to release an elimination plan—really important; if you're going to achieve elimination, you have to have a plan how to do that. And also, if you're going to spend those large amounts of money, you can't spend large amounts of money without having a strategic plan in place. In England, we're in the process of negotiating a five-year deal with pharmaceutical companies. What that will mean is there will be set targets, a set amount of drugs and incentives to find the undiagnosed and those who are lost to diagnosis—so, case finding, essentially. By doing this, England are now in a position where they can announce that they could eliminate by 2025. Scotland, with their deal, will have a structure that will allow them to do that. And it leaves Wales, currently—it could change really quickly, obviously—slightly behind, where they perhaps had been slightly forward previously.
You mentioned incentives for health organisations in England. What sort of incentives? Are they financial incentives, or—?
Yes. So, as part of the negotiations and the contracts that they would draw up, pharmaceutical companies have been asked to sort of pitch to NHS England as to how they would fund programmes to go out and find undiagnosed patients, and then they'll allocate them a part of the tender based on those.
It's actually unique and it's not been done before. So, it's perhaps, for the pharmaceutical companies, slightly concerning because it means then that they become—they're commissioning services and they don't do that. But, for the person who's providing, the person who's buying—the commissioner—it's actually—. They get to get their drugs at a reduced cost, but also they get—. Particularly with hepatitis C, because there are a lot of people who we don't know where they are, there's a lot of work to be done in the case finding, so, by default, you as a Government, or the English Government, push some of that responsibility back onto the pharmaceutical companies. So, it's a win-win for the Government, really.
Can I ask you—? You've talked about the need for an elimination strategy, a clear plan—we don't have one at the moment in Wales; we've got the liver disease delivery plan, which comes to an end in 2020. There's no successor plan that has been developed as yet, as I understand it. So, where do you think things should go beyond 2020?
I think we would certainly be concerned if there wasn't a replacement plan that addressed hepatitis C beyond 2020. The point that we'd be keen to make is that 2030 is really not that far away, so now is certainly not the time to be taking the foot off the gas—quite the opposite, really. I think, as Rachel has referred to with what's happening in Scotland, what we would really like to see, ideally, is a kind of dedicated hepatitis C elimination strategy that would really set out all of the steps that need to happen if it's going to be achieved and co-ordinate all of the various actors that would be needed to do that. I know, back in October 2017, the Chief Medical Officer for Wales released a health circular on viral hepatitis, and in and of itself that was certainly welcome, but I don't think we would feel that that goes far enough in being a comprehensive plan that really directs people in what needs to happen. So, we'd like to see that be built on and a more detailed and thorough strategy produced. And I think just two related points to that—of 2020 coming up and the liver disease delivery plan ending there—. There are a number of national roles that are really quite crucial to the hepatitis C treatment programme here in Wales and our understanding is that, at the moment, the funding for those is quite uncertain beyond 2020 because of that. We would certainly be advocating that they should continue beyond that. As I said, it's certainly not the time to be losing momentum.
Just one final supplementary here, if that's okay. I'm sorry to interrupt you, but you've talked about a specific plan just for hepatitis B—
—so, you don't think there should be a wider liver disease action plan, then, or delivery plan. You think it needs a discrete piece of work focused on this.
There should be both.
There needs to be a discrete piece of work around this because—I'll come to it at the end—this is an amazing opportunity to eliminate a disease and save a lot of money and save a lot of lives. You have to have a liver delivery plan, of course, because there are many liver diseases—we've got nonalcoholic steatohepatitis; fatty liver coming up closely behind—but you have an opportunity: you have a cure for hepatitis C. So, that's why it's important to have that separate strategy for hepatitis C at the moment, within—.
Ocê. Jayne Bryant sydd efo'r cwestiynau nesaf.
Okay. Jayne Bryant has the next questions.
Thank you, Chair. We know that knowledge and awareness of hep C among the public is low and you're calling for Welsh Government to develop a nationally co-ordinated series of public awareness events. Can you tell us a little bit more about how you see that happening and why you think that's important?
I think, ideally, we would love to see—and I don't know if we'll ever see—something like the HIV campaigns, a national campaign that raised awareness with everybody. I think that—you know, it's well known that the stigma with hepatitis C is enormous, and what that does is instil a lot of fear so people are afraid to come forward. We know there are marginalised groups, so we could target—. And targeted awareness amongst substance misuse services, homeless services, areas where we know that marginalised groups are—you know, so we target them in those. GPs, there has to be—we have to do some work with the GPs, and, of course, pharmacists. But the reason why we include a national campaign as well is because there are other groups that we can't forget. So, we know who our largest cohorts are. There are people who were infected by blood and are only recently finding out. We're not talking about haemophiliacs—I'm talking about people who have had blood transfusions and it hasn't been realised until later. We need to change the conversation in terms of, 'There's an easy treatment, there's a cure, there's no need to be afraid of it'—just change the conversation—and that can only be done if you make it wider than just those hidden communities.
Helen Mary, you've got a supplementary on this point. I'll come back then, Jayne.
So, slightly playing devil's advocate here, these public awareness campaigns are extremely expensive if they're effective—if you're using television advertising, that kind of thing. Given that the pot is small, would it not make more sense to concentrate on reaching out to those groups that we know are the highest rates of people with—? I'm just—. With this particular condition—. Because, when you think about the AIDS campaign, the AIDS campaign was about prevention, it was about preventing people from contracting the illness. We know, and your paper's very clear about, the groups of people who are most likely to need this treatment. The potentially hundreds of thousands of pounds that you'd need for a really effective public awareness-raising campaign for Wales, would that not be better spent on some outreach staff or—?
Yes, I guess that's why I said 'in an ideal world'. I think, realistically—. So, in an ideal world, if there was, we'd go that way. But, absolutely, to target the groups, of course invest it in the case finding—. But, if there was ever a way—whether it's done through yourselves going and having tests and raising awareness in your own constituencies—. There needs to be a way within that that we can use the money for case finding, but we can also raise awareness amongst the general public.
So, it is both, and we have to, of course, target the areas where we think there is the most need, but we do need to let the general public—the general public need to be informed as well.
You mentioned that we need to raise awareness with GPs and pharmacists in particular as well. How do you think that should be addressed?
Do you want to—?
Well, I've got the question here of tackling low levels of knowledge with healthcare professionals. Thank you for inviting me as well. So, it's important to acknowledge the valuable work already carried out by Public Heath Wales. We ourselves have been down doing roadshows down here to try and raise awareness amongst healthcare professionals. I think it's an ongoing thing—healthcare professionals change. Something that we do in England is we introduce it into their continuing professional development, so there are modules that have certificates attached that nurses, for example, can access and get those modules.
It's also, I think, important to remember that it's become very simple—the management and treatment of hepatitis C—so it doesn't actually need as much learning and training as people think. I think GPs only need to brush up for a 15-minutes online course on it, for example—so, looking at e-learning and something that you can roll out with that method, educational films. And I think—. In England, we have done work. Public Health England had commissioned some e-learning through the Royal College of General Practitioners to be rolled out. But it really came down to promotion, because it was one thing getting those materials together, but what happened with Public Health England was that they really pushed it to nurses and drug services in community settings, and they got over 1,000 people to take that e-learning module. So, promotion is really important if you're going to develop learning. I think Wales is good at promoting. When you do get behind campaigns—. I work in drug services, I know about the naloxone campaign you rolled out. It was very successful. So, if you can get behind some kind of awareness/learning campaign for healthcare professionals—.
Lastly, I would like to say that something that I've been involved in recently is using technology to de-monopolise expertise out of hospitals into community settings. You're very rural. I don't know Wales that well, but I have been around the mountains down here a bit, and you've got a lot—. So, there's a model called ECHO that they use in the United States where people don't have to travel a long way to get to an expert in hospital. It's a fantastic model. It can be accessed at no cost if professionals down here—healthcare professionals—wanted to use it. And, also, something else we do in England is we have what, I guess, here would be the equivalent of managed care networks—we have the ODNs in England, and what they've done is they've opened those up to anybody who works in healthcare. So, you get nurses from drug services coming along, and all of that participation increases their knowledge. So, I hope that answers the question.
Yes, it does, thank you. In the paper, you've highlighted peer-to-peer support and peer groups as a particularly effective way of raising public awareness. How do you envisage it working in this particular context?
So, I've been quite involved in the development of our peer-to-peer programme for the Hepatitis C Trust. We know that we need to do things a little bit differently. We've talked already about the targeted cohort. I think you mentioned it yourself—the fact that we can't know who's got this disease. They are people who don't respond, necessarily, to GPs. They don't respond to authority. They often need a lot of trust. They get an idea in their head and that sticks and then they tell all their friends about it and that's it. So, they're operating often on—. You know, it's amazing how many people don't even know that there is a new treatment. So, they've seen people go through the old treatment, that was very hard to tolerate, and they've just said, 'No, thank you'. Also, these people prioritise many other things in their lives and hep C gets put at the bottom of the pile—'It won't kill you today, so, are we going to worry about it today?'
So, what we've realised is that it's really important to get into that community, and the way we do that is we work with local services and we find people with lived experience—lived experience of the virus, but also lived experience of being out on the street, of using drugs, and we work with them to share that lived experience in group settings, and it's a really, really effective way of getting awareness messages out. It's incredible to watch if you go to one of these groups and you suddenly see a room full of people who are very disengaged with being in a group, suddenly, someone's opening up, being vulnerable, talking about having been where they've been, talking about what they then did regarding their treatment for hep C, and you see everyone's eyes looking up now and they're engaged and they're listening. So, we use peers—'use' is a horrible word; peers are a very good way to deliver a message. While I was preparing for talking to you today, someone said to me something great, which was, 'Stigma cannot exist where there is dialogue'. So, it's about getting into the community and actually talking about hepititis C.
And, then, we've developed that model further, where peers will then—. We have something called the 'follow me' programme. So, what we discovered was we were doing these groups and, in every group we did, people were putting their hands up at the back of the room saying, 'Well, I've got hep C. What can I do about it?', and our peers now are able to say, 'Well, follow me, I'm going to take you to see a nurse. It won't take long. We're going to get you assessed and we're going to get you treated', and it's very powerful. And, so, we've now got peers actually taking people to the clinic settings, which is a frightening thing as well for this cohort. So, it's the engagement part, I think—that peers really meet, and I think it's the engagement that means, actually, as the road gets narrower, and so you get these new treatments for hepatitis C, which is wonderful, you've got a queue at the hospital of people who are engaged. People like my mum will not miss an appointment for any of her hospital stuff. But then you've got to get further and further into a community that is hard to engage.
Just briefly, without going to too much detail, because I know time is short, can you tell me a little bit about the kind of training and support that these peer mentors—the people—are provided with, because it's quite challenging for them, as well? They're obviously people who have been through—. I mean, it sounds like a great model and you see in lots of fields that that kind of peer-to-peer support can make all the difference, but I'm just interested in the kind of training and support they get for themselves, because that's quite challenging for them, too, isn't it?
Yes. I've worked for a long time in drug services. They've always used the peer model. We believe we give our peers a lot more support than I see happening elsewhere because there are a lot of cuts being made and peers just become a token gesture, if you like. We have a very solid package, so they get trained in how to keep themselves safe, and boundaries. They get given a phone. We have supervision with them. We do a lot of hand holding, so we would not be letting them go out and do work on their own until they've shadowed someone and they feel comfortable. So, yes—it's important because we are asking these people to open up, and be vulnerable, especially when they deliver their story. But I believe we hold their hands solidly; because we're quite small and everyone in our team's very passionate, we're able to give that care that's needed.
Y cwestiynau nesaf, sydd gan Lynne Neagle.
The next questions are from Lynne Neagle.
Thank you, Chair, and apologies for being late.
You mention in terms of increasing community-based activity that dried blood spot testing needs to be available in settings like sexual health clinics and substance misuse centres. Can you just tell us a bit more about what the current situation is, and what the challenges are to actually improving that situation, please?
Well, I understand the current situation in Wales is that you have introduced KPIs for some of these community services, which means they are going to be kind of measured against the amount of tests that are offered. But these can be, unless they're rolled out in the right way—. I'm going to go back to workforce development. I was talking earlier about how someone offers a test is crucial. You can literally say, 'You don't need to get tested. You've already been tested, haven't you?' or you can engage and say, 'We need to talk about hep C. You've been at risk'. I more often than not work with a lot of nurses who work in drug services who are trained in a general way, but not specifically with hep C. If they don't feel confident about hepatitis C, they will not even start the discussion, and it's the discussion that needs to happen before the test takes place.
Something we've seen in some contracts I'm a fan of in England, but in very few, is they have more financial incentives in the contract, and it's amazing. So, if you, say, try and offer a whole load of your clients who have been at risk a test, they'll say to the commissioner or whoever's paying for the service, 'Well, we've offered them all, but we only got 20 per cent to take the test'. Then they say, 'We're going to give you a financial incentive to test 80 per cent of the people who've injected who are coming to your service', and they get 80 per cent of them tested. So, there are different ways that you can monitor contracts, delivering community services—
So, are you saying that offering a financial incentive, then, not just increases uptake, but is an assurance that they're doing that in a quality and sensitive way?
Yes, I think testing is not complicated anymore. It's not like HIV, where they have to have a long discussion beforehand because if you find out you've got it, then it could be—or it used to be, anyway—that you could likely die from it. So, we're not in that area anymore. It's just simplified now, and I think testing 80 per cent of your infected or your at-risk client group is really important, and I think you do get the quality if you just put a bit of training into doing that. If a commissioner is saying, 'Well, we want you to do this, and there's a payment against it', the first thing they do is send their nurses off to train them to do the testing properly.
But I think I've seen so many variations of why it breaks down. I think contracts for community services start in the best intention and end, as usual, as the purse strings get tighter, and they look at lab bills and they think, 'Well, actually, we can cut down the testing here'. So, it's important to say to services, 'We want you to test, and here's a ring-fenced bit of money'. A lot of commissioners I've seen, in good models, say, 'We want you to provide the service. Send the lab bill to us'. So, it doesn't even sit with them, so they can just test as many people as they need to.
We need some agility now in questionings and answers in terms of time. Queen of agility today, Helen Mary.
And this week's prize for sarcasm goes to Dr Dai Lloyd. No, sure.
One of the things that worried me most in your paper was you telling us there were concerns that health board directors are discouraging hepatitis teams from exceeding their treatment targets and putting caps on treatment rates. Can you tell us a bit more about that? That was a worry to me.
Yes, it's something we think is concerning as well. So, obviously this is just in the health board areas that are actually getting to their treatment targets, which is quite few, but it's not an encouraging precedent for when other health boards get to that level. Yes, as we said in the written evidence, we've been told anecdotally that hepatology teams have had finance directors come and say, 'You've treated the target number. Why are you planning to then go beyond that?' Obviously, that's absolutely not conducive to elimination. It's completely the opposite of what we want to be seeing.
I think the point that we would also want to make is that it's actually a false economy. If you are not spending the money on treating people now, you're just storing up problems for a later date, because then there's a risk of someone developing serious liver problems and all of the costs that are associated with that to the health service. So, really, you should be investing now heavily and then, if you eliminate hepatitis C, that's actually saving money for the health service in the long run. So, I think that what we would really like to see is the Welsh Government making it clear to health boards that treatment targets should be considered a minimum and absolutely not as a cap. I think that could be something that would be really useful for the Welsh Government to do.
That's something we could consider, I'm sure, potentially recommending to them. Do you have broader concerns about funding and the sustainability of funding for this activity?
I think probably the issue that is of most concern to us is just that health boards are using the money that they have been allocated for the hepatitis C treatment programme for hepatitis C. So, back in 2015, there was a specific budget that was allocated for the hepatitis C treatment programme. At that time, it was considered that the vast majority of that money, if not all of it, would be needed for the actual cost of the treatments themselves. However, since then, the cost of the treatments has come down. Through national procurement, it has come down quite considerably. So, really, there should be money in the hepatitis C budget to be investing in, for example, staff that can go out and do that community testing. So, for example, community nurses that can go into drug services and be finding those undiagnosed patients. So, I think that part of the issue is that the current budget for hep C is not ring-fenced. It goes to the health boards but then, when they see this reduction in the cost of the treatments, they might be tempted to say, 'Okay, we'll shift that money to another health area'. Again, I'd just go back to that point that investing heavily in hepatitis C now will be cost saving in the future. So, it's a false economy.
Just a slightly separate issue that I will just mention quickly is what Rachel mentioned earlier, about NHS England currently undertaking this procurement negotiation with industry. We've had correspondence with Vaughan Gething quite recently where he's indicated that the Welsh Government is keeping a close eye on that, and that it might be something that Wales would consider, depending on the outcome of the negotiations in England. That's certainly something that we would encourage. The prospect of what NHS England is trying to do is that it would introduce long-term budget certainty for the health service. It would include a role for industry in finding undiagnosed patients, and also incentivise higher treatment numbers. There are a couple of models of how it might work, but what would be most likely is that you would have a set amount of money that you would commit to giving to industry, and then you can treat as many patients above that number as you want. So, that really incentivises the health service to get out there and treat as many people as quickly as possible. So, as I say, depending on what comes out of England, it would be good to see Wales consider something similar.
A'r adran gwestiynau olaf gan Dawn Bowden.
And the last section of questions from Dawn Bowden.
Thank you, Chair. I wanted to ask you particularly about the barriers to achieving elimination. I think you've touched on a number in answers that you've given to questions this morning already. You've talked about treatment targets. You've talked about awareness, both with the public and the medical profession. You've talked about testing. You've talked about the lack of a plan. Any of those do you see as, perhaps, the key barriers to overcome, or are all of them together of equal concern, and how are we going to address this? So, probably two aspects: what's the key barrier, I guess, to overcome, and how do you think we should be looking to address that?
I think that everything that we've talked about is part of that, but the key to that is an elimination strategy—a plan. Because then, what you'd have is, all these areas would be covered in your elimination strategy. You would have a directive to your health boards. You would have either a deal with pharma or you'd have a plan in terms of, 'How are we going to reach elimination by this set period of time?' For somebody from the outside, as to the approaches in Scotland, England or Wales, none of them have elimination strategies in place at the moment. How can they say, 'We are going to eliminate'? How can anyone, if you haven't got a plan to get there? It's just common sense. And, there's a lot of money involved. Wales has got a relatively small number of people to find and treat with regard to hepatitis C. So, really, they could be the first to eliminate. If there's a strong, solid elimination strategy that covers all of the areas that we've talked about—finding the undiagnosed, getting out into the community, making sure everyone's tested, taking away any caps because there's enough incentive for everybody to be treated—you very easily could eliminate hepatitis C way ahead of anybody else.
So, that's the key message that you'd really want us to take from this committee back to Government.
Finding the undiagnosed and elimination. Put an elimination strategy in place with everything that we've discussed, in terms of treating in the community. You could take the treatment out into the community, and you can save so much money by having it in a structured plan.
Yes, okay. Is there anything else that we haven't covered through the questions that we've asked today? I mean, you've probably got your list of things that you wanted to tell us. We may not have covered everything, but there was something that I wanted to raise with you, which we haven't talked about, and that is about testing of surgeons and look-back processes and so on. Is there anything that you want to say about that, particularly?
Interestingly, prior to coming in, we were actually talking about the testing of surgeons this morning, because it's come up a couple of times. Stuart was saying it had come up in Wales. I know about an experience happening in Scotland. I think it's really important that professionals who are in a situation where there is a risk of blood-to-blood transmission—of course, they absolutely should be tested—
But, at the moment, there's not—. I'd have to remember this now. I haven't got it in front of me. I had a case that I dealt with—a constituent of mine who was infected by a surgeon. There was something about—. Testing is now compulsory, but anybody who had come into post prior to a certain date and is still practising—testing of them is still voluntary. Am I right in that? They can't be compelled to go for a test. Is that right?
Well, we were just—
The thing we were involved with was—
I think it depends on which NHS trust you work for. They have all got their own policy on testing their own surgeons. They can even decide, if someone moves from one trust to another, that they can just self-declare when they arrive that they've been under the governance of another hospital. They've got different policies, depending on which trust you're in, in England. I don't know about the health boards in—
So, I think—. This is going back a couple of years, but I think we were involved with a constituent of yours where there was a case. I think that one of her concerns was that the surgeon had been found to be positive for hepatitis C, but then there was no look-back exercise put in place to see what operations he might have performed and whether he then could have passed in on through those. I think that she had only really found out by chance that she had hepatitis C. So, absolutely, if in future there was a case of a health professional and it was found that they were positive for hepatitis C, that's certainly something that we would advocate—that there needs to be a concerted effort to go through the record and go through any sort of—
I thought there was a look-back exercise in that case, but it was perhaps not as rigorous as it should have been. I think it was limited. I think that was—
Right, yes. Okay.
But I think that that all feeds into, as we were saying before, the raising of awareness. So, absolutely, there are things to be put in place in terms of people at risk because there's a risk of blood transmission. There's a look-back exercise—absolutely. There should be processes in place already in terms of—. Around HIV and hepatitis C, there are small incidences, I think, in comparison to—. There have been very few, except for when you go back to the infected blood scandal. So, there needs to be awareness raising. There needs to be testing across the board, wherever we can, definitely with the risk groups that we talked about. But, that's not to dismiss that—. We have a helpline and we are constantly—. On a weekly basis, we receive calls from people who have recently been diagnosed, and they have no idea how they've got it. They are not injecting drug users. They haven't had a tattoo.
I guess to go back to your question, quickly, because I'm really aware we're going to run out of time, I just wanted to say that what's really important about now is that we've a really rare opportunity now. There hasn't been a cure for a disease for 30 years. This is a unique opportunity that has huge benefits for the social purse, but also social benefits for the individual. So, when we talked about the peers, there's a lot of harm minimisation that happens within the peers. But, also, a lot of the peers that we work with go on to go into volunteering, into education, into employment. So, we've got a lot of cases whereby people taking responsibility for their health by being treated—they are changing their lives. So, there is a huge amount of impacts for the individual, let alone for the public purse, within this.
We have these new treatments. Elimination is achievable. How amazing would it be if Wales could get its strategy together and treat? We know there is an investment and there is interest in working in the community. Most recently, we've just heard that we've secured a small pot to run some peer programmes in Wales, which is amazing and fantastic. So, we'll be able to launch into that. There's a lot of experience and best practice that can be shared across the devolved nations: England, Scotland, Northern Ireland—that's slightly different—and Wales. So, I think that there is no reason why you can't take the lead in this. I really don't. But, what's important is that you have a strategy that maps that out.
Hapus? Reit, diolch yn fawr ichi. Dyna ddiwedd y cwestiynau. Diolch yn fawr ichi am eich presenoldeb. Diolch yn fawr, hefyd, fel dŷn ni wedi'i ddweud eisoes, am y dystiolaeth ysgrifenedig y gwnaethoch ei chyflwyno ymlaen llaw. Yn naturiol, byddwch chi hefyd yn derbyn trawsgrifiad o'r cyfarfod yma jest er mwyn ichi allu gwirio ei fod yn ffeithiol gywir. Ond, gyda chymaint â hynna o ragymadrodd, diolch yn fawr iawn i'r tri ohonoch chi. I'm cyd-Aelodau, fe gawn ni egwyl rŵan am ryw bum munud i gael y tystion nesaf i mewn. Diolch yn fawr.
Content? Thank you very much. That's the end of the questions. Thank you very much for attending. Thank you also, as we've said already, for your written evidence beforehand. Naturally, you will also receive a transcript of the meeting to check for factual accuracy. With those few words, thank you very much to the three of you. To my fellow Members, we'll now have a break of about five minutes to bring the other witnesses in. Thank you.
Gohiriwyd y cyfarfod rhwng 10:11 a 10:18.
The meeting adjourned between 10:11 and 10:18.
Croeso nôl i bawb i adran ddiweddaraf y Pwyllgor Iechyd, Gofal Cymdeithasol a Chwaraeon yma yng Nghynulliad Cenedlaethol Cymru. Erbyn rŵan, rydyn ni wedi cyrraedd eitem 3 yn ein hymchwiliad undydd ni heddiw i mewn i lid yr afu math C, neu i ddefnyddio’r term clinigol, hepatitis C.
O’n blaenau ni rŵan mae sesiwn dystiolaeth gyda choleg brenhinol y meddygon teulu a'r Coleg Nyrsio Brenhinol. Felly, i’r perwyl yna, dwi’n falch iawn i groesawu Dr Mair Hopkin, cyd-gadeirydd, coleg brenhinol y meddygon teulu yma yng Nghymru; a hefyd Dr Peter Saul, y cyd-gadeirydd arall, coleg brenhinol y meddygon teulu; Delyth Tomkinson, nyrs glinigol arbenigol hepatoleg, bwrdd iechyd prifysgol Caerdydd a’r Fro, o’r Coleg Nyrsio Brenhinol; a hefyd Lisa Turnbull, cynghorwr polisi a materion cyhoeddus y Coleg Nyrsio Brenhinol. Croeso i bawb. Rydyn ni wedi derbyn eich tystiolaeth ysgrifenedig ymlaen llaw. Mae Aelodau wedi darllen pob gair mewn manylder dwys, ac felly, yn ôl ein harfer, awn ni’n syth mewn i gwestiynau. Helen Mary.
Welcome back, everyone, to the latest section of the Health, Social Care and Sport Committee meeting, here at the National Assembly for Wales. Now we've reached item 3 in our one-day inquiry into hepatitis C.
Before us now we have an evidence session with Royal College of General Practitioners and the Royal College of Nursing. So, I'm very pleased to welcome Dr Mair Hopkin, joint chair, Royal College of General Practitioners here in Wales; and also Dr Peter Saul, the other joint chair, the Royal College of General Practitioners; Delyth Tomkinson, clinical specialist nurse, hepatology, Cardiff and Vale university health board, from the Royal College of Nursing; and also Lisa Turnbull, policy and public affairs adviser at the Royal College of Nursing. Welcome, all. We have received your written evidence beforehand. Members have read every word in great detail, and as usual, we'll go straight into questions. Helen Mary.
Good morning to you all. Bore da. Could you give us an outline of your views on the current state of play with regard to testing and treating hepatitis C and the progress towards the elimination target for 2030? I don't know who wants to start.
Well, our overall position is that there are a lot of incredibly good initiatives going on across Wales, and I'm delighted we've got an expert with us who can say a little bit more about that in a moment. We do think that the key point where there needs to be more work is exactly on what you've just identified, which is the front-line professionals who can go out, assess and treat.
In terms of progress towards the strategy, therefore, there is a great deal of progress, but I think our overall position is that we are, at the moment, not going to meet those targets unless there is additional focused investment, including a specific strategy to take forward those aims. And I'd just like to ask my colleague now, perhaps, to come in on some of the work that is going on at the moment.
Yes. We're very fortunate in Wales that we have a very tight all-Wales nurse forum, so hepatology nurses throughout Wales at the seven health boards and clinical nurse specialists. We share best practice, we meet regularly and we've had a number of projects done recently, and we presented recently at the round-table event. There's the night bus project, for example, and the mosque project recently in Newport. As I said, there are a number of projects out there, but what we do need, I think, is a lot more people and collaboration between all the organisations, the tier 3 agencies, to come together and work together to raise awareness and to get out there and identify undiagnosed cases of hep C so that we can treat them. We're very, very fortunate in Wales that we can treat anybody, that testing is easy and it's simple, but I think we just need a very concerted effort throughout Wales to raise awareness so that we can find and treat.
Most of the GPs that I've spoken to in preparation for today are not really aware of where the programme is or what's happening. They're aware that hepatitis C is a problem and that it has long-term health issues and that there is treatment available, but not very many were aware of the strategy.
So, there's a job to do there in terms of raising awareness with your colleagues. That's been put to us by others. That's useful.
There is a Welsh health circular, isn't there, which was sent out in January 2018, in relation directly to hep C? I mean, from what you're saying, those circulars don't have a great deal of reach into people on the front line in your professions. Is that a fair assessment? Delyth is nodding on the end there.
I would say it's a mixed picture, because there's no doubt that having the Welsh health circular helps, in the sense that it clearly sets out where people are aiming to go to, and that's important. I think, as I said before, what's perhaps missing are the steps to get from here to there. I think it's also fair to say—and I don't know if it's something that people want to—. I can touch on it now or a bit later, but there is an issue around the difference between the awareness of health professionals who are working specifically in that field, and that is their job—their bread-and-butter job, as it were—and, of course, what's also equally important is the more general awareness of how to access those services from healthcare professionals working in other generalist fields. So, that's around continuing professional development and awareness, and, of course, there are some very specific issues there. I'm happy to elaborate on that now if that's helpful, or maybe if it's a specific point you want to talk about—
One of the specific points I wanted to pick up on from the circular was this requirement to identify those historic cases that everyone was aware of. I know that there was a requirement for the nursing profession to liaise with GPs to identify those who had been already identified, so that they could retest and get appropriate treatment. Is that happening as a result of the circular?
With Public Health Wales, we have a steering committee and we're currently undertaking a look-back exercise with Public Health Wales, so all those individuals who identified as being either antibody positive or actually viremic—we're looking back and working with GPs and going through the databases throughout Wales and hopefully bringing them forward so that we can test them again and maybe treat them.
So, they're not already being tested, despite the fact that we're 12 months on.
Some individuals have been tested previously, historically, and we've collated that data, so we've got that data now and we're working through it. So, every health board has a responsibility, by the end of January, to identify those cases, working with GPs, and to invite them back in for testing.
Do I press this button?
No, no. It all works automatically. I mean, with more powers, we could do more, but at least we can operate the microphones. [Laughter.]
A couple of points. First of all, from a primary care GP perspective, yes, sure, we have regard for Welsh health circulars, but I can't say that they're at the forefront of a typical GP's day-to-day practice. So, to push this forward, it's important that Government initiatives tie in with the profession, with educational back-up, particularly. And the college has been very active in terms of educational support for hepatitis C. We've got what we call a clinical champion covering the whole of the UK whose job is to try and push the agenda and develop the agenda. We've had a number of educational initiatives. There's one that occurred in Cardiff at the end of last year aiming for primary care professionals, and updating them about some of these issues. There's a hepatitis study day at the college in London later this month, and there are educational learning modules that we've developed for GPs and for other health professionals to push that agenda.
Turning specifically to the exercise to look back and to try and identify people who are at risk, in advance of this meeting today I spoke to Charlotte Jones yesterday, who's the chair of the General Practitioners Committee Wales at the British Medical Association, and she told me that it had been agreed between Public Health Wales and the BMA that Public Health Wales will be—this is my belief; I may not be 100 per cent correct here, but it's my understanding—identifying the group of patients that need to have this exercise done, and that the BMA on behalf of doctors has agreed that we will fully co-operate, and they will be identified to practices, and then Public Health Wales will be working with those practices to raise the issue with patients and to then take appropriate action to retest them and offer treatment if needed.
Okay. So, that chimes very much with what we heard from the Royal College of Nursing. But given that this is 12 months from the publication of this circular saying that that should be undertaken, why has it taken 12 months to get to a situation where this has not yet actually been fully implemented in terms of contacting people with previous history with hep C?
I can't answer that, really. This was something that was to be started by Public Health Wales.
Okay. The impression I have is that the status of a Welsh health circular isn’t paid sufficient regard in the same way as a focused strategy, which is what you referred to earlier, Lisa Turnbull, in terms of what's required to deal with this problem once and for all.
The health circular certainly helped us. It put weight behind it, and certainly engaging with the substance misuse services from that and the introduction of the key performance indicators from April—. But I think what we need to achieve is that it's everybody's business—health professionals, GPs—because it's not high on their agenda, and it needs to be.
Has there been sufficient focus from the Welsh Government holding everybody's feet to the fire for compliance with the circular? Has there been enough support from the Welsh Government, from Public Health Wales and others?
As we said earlier, I think it would be helpful if, as you say, there was a strategy specific to this area. We think that would be—. For example, my colleague's just mentioned the introduction of KPIs in one area, which is incredibly helpful, because if people are working consistently to the same priorities, then obviously it's much more helpful to get that collaboration across agencies. So, that's worked really well there, but obviously it would be great to see that matching up with other areas as well. So, yes, more could be done, and, as we said earlier, focusing the investment on those front-line professionals that can actually do the assessing, the seeing, the treating.
So, we heard from Peter Saul, chair, about a lot of the CPD and training that was available to the GP profession. Are there specific modules that have been developed for the nursing profession to be able to access too?
There are, and, again, I'll let my colleague come in with some really good examples of good practice out there, but what I would say generally is that there is an issue with access for the nursing profession to CPD. There's an issue for nurses who are employed within the NHS, because if we're talking about a session where we're talking about it actually genuinely being taught, or a discussion session, which is often the best way to learn, then you're obviously talking about backfilling those places. So, it's very hard to get health boards to organise that kind of release. Even if you're talking about online training, which is also excellent, bite-sized chunks for people, again you're talking about access to a computer, you're talking about time to sit down and have those 15 minutes. If you're talking about nurses that are employed outwith, so, for example, within GP surgeries or other agencies or organisations, then very often, again, that access is obviously entirely dependent on the excellent practices, or not, of their employer. So, it's also, therefore, about making sure that if there is a programme of CPD, it's inclusive in terms of who's invited to those sessions, or who they're tailored to. But also, it's not just about making the invitation, it's also then maybe about collaborative working with those employers to make sure that the right people—so, the practice nurse, or whatever—actually are able to access that. I don't know if my colleague wants to come in; I know you've organised some initiatives specifically on education.
We have. Again, with the all-Wales hepatology nurse forum, we run yearly annual conferences, but specifically targeting the people who work within the substance misuse services and vulnerable services for the homeless, for example, and we've done roadshows throughout Wales. But we've recently been running, for the last 18 months, BBV study days, and that's been incredibly valuable in getting the people on the front line—we have peer mentors, we have people from all backgrounds: health visiting, social workers, for example—to understand how important they are working with us, and moving forward so we get—. It becomes everybody's business, and that's been very, very valuable, and that's been accredited.
GPs have had in the past protected learning time, which would be a half day when the practice was covered by the out-of-hours service, and all the GPs from an area could attend an educational event, often with a health board-led agenda. So, something like this where the health board would have an initiative would be ideal. But recently, certainly in Cwm Taf, these have been cancelled because of lack of out-of-hours provision, so there's no availability for GPs to be released for protected learning during the working day.
Thank you. This is a specific question for the Royal College of Nursing. In your evidence, you tell us that further investment is needed in blood-borne virus teams to ensure that there's equitable and transparent access across Wales. Can you tell us a little bit more about that and give your reasons for the view?
My colleague wants to come in on that about the terms of the initiatives with—. As I say, it is very specifically about making sure that there are sufficient nurses out there with the specialist knowledge that are able to go out and actually carry out that work.
Throughout Wales, as I said, we've got the network. We work very, very closely together, and we've found that since the implementation of the liver disease delivery plan, it's diluted a little bit, taking away the scope and capacity for some specialist nurses just purely for BBV. So, whereas in Cardiff we're very fortunate that we have community BBV nurses—we actually go out on the front line and get out in the communities where we need to be. But a lot of my colleagues throughout Wales don't have the capacity anymore to actually do that. So, we need dedicated specialist nurses. We need substance misuse services to actually screen so we can actually treat. So, yes, we need a lot more investment in community teams.
If I could just add there to make a specific point about the role of the specialist nurse—it's a general point across all areas—there does need to be a more focused attempt at workforce planning about the distribution of those roles. Historically, they have grown up almost in a pattern that is reliant on individual champions or initiatives locally, so you can have this strange inconsistency. And also, of course, if people do move roles, jobs, retire or move on to other areas, then there may not be succession planning. So, there is a wider point here about distribution of either clinical nurse specialists at that higher grade—band 7, or whatever—and the lower and the nurses with specialist knowledge. So, there's a wider workforce planning point here.
Thank you, Chair. You have touched on some of the issues around training already, but the Hepatitis C Trust has highlighted that patients often report unsatisfactory encounters with GPs and non-specialist nursing staff. So, Lisa, you referred to some of the challenges, but what are the solutions, then, that we could recommend so that we do get that workforce upskilled in this area?
Some kind of monitoring of uptake, I think, would be helpful. My colleagues have mentioned protected learning time already, and nurses don't have that. That would be astonishing, and that would be amazing. I think that different ways of delivering that kind of training is helpful. I do think that a lot can be done with the blended learning attempts, seminars online and ability to access that. People do learn in different ways, and it's helpful. So, I think provision of that, and monitoring the uptake of that, could be useful in terms the general knowledge. And I also think as well as—. You specifically asked, obviously, about non-specialist healthcare professionals, and that's how I think that can be dealt with. And bearing in mind the independent sector as well; I think that's also important—so, I think looking at the provision of that wider than just GP surgeries and the NHS. But there's also a point about making sure that that information and that awareness raising is wider. So, for example, we were discussing earlier about information provided to people engaged in tattooing or piercings, that kind of thing. So, those kinds of practitioners as well, it's really important to target those with that kind of information.
The toolkit is monitored across the UK, so I can't tell you about how many Welsh GPs have accessed it. But there are about 700 GPs each quarter accessing the toolkit, which is really good because it's actually got specifically Welsh information there. I guess the protected learning time, if you really want to get something out there, that is the best way to make sure that most GPs—because there would be a representative from each practice at a local health board supported learning event. Other than that, I guess it's just raising awareness, making sure that circulars are publicised. But we get so many of them that you become a little bit overwhelmed, and, if it's not something that's particularly pertinent to your day-to-day practice, then the circulars tend to be a little bit forgotten. But most of us know where to access this if we need it. We often see patients who have problems that we can't address there and then, but we have the opportunity to find out what we need to find out and have a further consultation with our patients. So, we might not have the answer when the patient comes to see us, but we can find that information fairly quickly.
I think we've already got some of the building blocks here. We've got a Welsh health circular that sets out standards. We've got a college that has invested in, and is delivering, educational material. But there are other areas, and I think the locality is perhaps the key. And key people there would be health boards taking it on as an important agenda to help with some of these protected learning time events, which would involve nurses as well as doctors. And the other thing is the liver teams and Public Health Wales locally really reaching out to colleagues. So, until I was doing some work for this committee today, I actually didn't know who the local liver team were at our local hospital, which, in my case, is Wrexham Maelor. So, I've made contact with them. But it's a two-way thing in a way, in that they also need to be making contact with local practices and colleagues, and, of course, the reason that they don't is because they're too busy doing the stuff that they're measured on, they're paid to do, which is looking after the patients. So, it all, in a way, comes down to taking a multifaceted approach and making sure that the resource is there and people have got the time and the opportunity to engage with learning and delivery of this.
[Inaudible.] Obviously, some GPs may access the RCGP course online, but most of them, I think, might have, as you said, a special interest in that particular field. But I know that we have some issue with the fact that a lot of people that may want to come forward for testing—and there's a huge stigma around viral hepatitis—may approach their GP in the first instance, but then maybe they don't know actually where they can go and be tested. So, maybe, again, if we could work with our GP colleagues to say, 'If they do want testing in a GP surgery, that could take place', because a lot of people—on most occasions, they are directed to sexual health clinics, but a lot of people wouldn't want to go to sexual health clinics to be tested. So, I think, it's again public awareness of where they can get a test done confidentially, and then be referred into care.
Symud ymlaen, mae'r cwestiynau nesaf gan Jayne Bryant.
Moving on now, the next questions are from Jayne Bryant.
Thank you, Chair. Mair, you've already mentioned the toolkit and how widely that's being used, but perhaps you could expand on whether there are any plans to take that further forward.
It'll be regularly updated, and I think the plan is to look at it, and the information that's on there, on an annual basis, and make sure that it's kept up to date. I think that GPs have become much more aware of liver blood testing because there's a liver pathway that has been widely publicised now. So, when we get people with slightly abnormal blood tests, instead of just keeping on repeating them, which is probably what we did in the past, we now have a clear pathway, which includes testing for hepatitis B and hepatitis C as part of the liver screen. So, we're doing much more screening in general practice and that's because of local initiatives that were well publicised.
Thank you. Delyth, you've mentioned the issue around people not knowing where they could get tested and that GP services would be one good way. What are your views on how to increase community-based activity to drive that improvement forward?
I think—. Throughout Wales, individual—. Well, twice a year, we have all Wales BBV network meetings, and Brendan, my consultant, who's leading on the BBV plan—we challenged all the health boards to come up with their or identify issues that they have in their own patch. I think it's very important that each health board maps out what we've got, what we can work with, and work very, very closely to improve the community networks. And I think, from there, it's identifying where we can be to go out there and encourage people to have a test, and then we can go out and treat. So, it's very much getting out into the community, identifying where we need to be and working very, very closely with our partners in the community and through agencies.
Yes. I think we presented it recently that, last year, we ran a night bus project in Cardiff. There's a double-decker bus that caters for the homeless—or street homeless people. We worked very, very closely with the HANR Outreach team, a Cardiff community outreach team, and the Salvation Army. So, they advertised it and they brought people forward for testing. We ran it on a—it's four evenings, just an hour and a half, and we had volunteers like myself, my consultant, and we've got a point of care specialist. We're able to screen and get a result within 30 minutes. So, we screened 37; we identified seven positives from that. We did a whole health screen; with a portable FibroScan, we could do a liver scan. Because of the engagement and the working with the outreach teams, it meant that we could actually screen and treat, which is what we want to do, and so reduce that pathway. What we're aiming to do is prevent the further transmission of infection to other people. So, the sooner we can actually identify the cases and treat them, the better it will—the better the outcome.
Great. I think we've touched on some of the points, but we know from the evidence about the importance of the dried blood spot testing and that it should be routine in settings such as substance misuse services and sexual health clinics, but what do you think—? Are there any more challenges to increasing the uptake of that testing and how do you think they could be overcome?
I'll just say something generally about public health education. I think, again, we need to go back to look at how that's delivered inside the curriculum; let's start there. I think there is a role here for school nursing teams in terms of making people generally aware of health and health risks, public health risks—so, moving into the secondary school environment, making sure that that access is there. There is a role about information for the general public as well, and then of course there are specific initiatives where we have to target the marginalised communities in terms of more outreach. I'm sure you've got some—
I think we need—you know, the challenge is to destigmatise the test itself. I work in Cardiff prison; we implemented opt-out testing some time ago. But it's the expectation that, if they engage in substance misuse services or if they come into the prison, they can expect to have a test, and instead of sort of—. I know Aidan from the Hepatitis C Trust mentioned about the way the test is presented will affect whether or not they take the test initially. But that expectation—you know, it's good to have a test, the test is easy, the treatment's easy, we can cure it. So, it's just destigmatising the test and making it available to everybody. What we're finding is that it's not just injecting-drug users; we've got people now travelling far and wide for fillers, Botox treatment and things. It's making the general public aware what the risk factors are. We had a case recently where somebody went to a Botox party and they shared needles. That's just the general public's lack of awareness, really. But it's identifying what the risk factors are, and, if they want to have a test, if they think they've put themselves at risk, they know exactly where they can go for the test.
I spoke to one of the GPs in Aneurin Bevan who provides a drug misuse service, and the spot testing was not available to GPs in her area, so it'd have to be a venous sample. It was only if they went to the drug clinic in the hospital were patients able to get the finger-prick test, and I'm not aware that they're available in my practice either.
I don't know if—. I'd be interested to hear Delyth's comments about this, but in preparation I spoke to some colleagues at Berwyn prison in Wrexham about what they saw as the issues here, and I wasn't clear about this spot testing. One of the points they raised is that, when people are taken into the prison and they're offered testing, sometimes they don't have the resources or staff to actually do the testing there and then, and I was told that, if they elect to have testing and they don't, or they choose at a later date to have testing, they can wait several months before they actually can make their way back to the healthcare centre to have testing. Now, I don't know if that's because spot testing isn't available in all prisons, because it would be obviously a more complex procedure if somebody's doing a needle test, which would need more training. Most people would be able to be quickly trained to do a spot test. So, that was one of the issues that they raised. May I continue, just about another issue about—?
The other issue that was raised was that they were saying that the local hepatology team will get drugs for a prisoner, and these drugs will be on order, and then they say the prisoner is then moved to another prison, maybe in England, and they then have difficulty finding where the prisoner's gone and getting the drugs to the prisoner for treating. So, there are clearly some issues. I don't know if you see them in Cardiff.
We do. We fortunately have an all-Wales prison network as well, and it's led by Stephanie Perrett, who's the senior nurse. So, I know Berwyn, particularly, has had certain challenges. What we've done, again sharing best practice, is that—. Usually Welsh prisoners will stay in the Welsh prison estate, and we're very fortunate that, for example, Cardiff is a remand prison, so, if we identify them—and what we're aiming to do is as soon as they come in through first reception we will test them and then we can treat them. We put them on a medical hold, which is respected, so that they're not moved, so we can start the treatment, and, if they do need to be moved, then, even to England, we make sure that the medications do go with them. We have had instances where prisoners have gone to England, but again it's working with the security service. We've got the governors on board with this; they realise—. We're aiming to have hep C-free prisons in Wales, so we all have to work very, very closely together. I think my colleague Sandra, who covers Berwyn prison—the specialist nurse—has had issues, but she'd probably be best placed to describe those.
I think it would be worth saying, at this point, generally healthcare services in prisons is a topic of concern, and I think, specifically to the Royal College of Nursing, there are some issues in north Wales. I think it is a problem in terms of the capacity of the service, of the healthcare services there, and it is actually something that the Royal College of Nursing is doing some current work on at the moment, and hopes to be in a position to present some more information to the committee in due course. But I think, given that the issue has come up, it's worth flagging that.
I think Sandra has issues because of her capacity, because most of her work is taken up with hepatology, not just—. So, I think she's only able to go in once a month.
Thank you, Chair. I just wanted to mention the migrant communities where there's a higher prevalence, in some countries, of hepatitis C. Is there any good work going on there, and how are you getting to those communities?
So, most of them come in through the asylum services in Cardiff, and we have a primary care clinic there. So, about 18 months ago, we set up an outreach clinic there; so I go in and run a nurse-led clinic. So, they test them as soon as they come in through their service. If they're screened as positive, then they're referred into my clinic, and then I would usually refer them on to the hepatology or wherever they go in Wales. And we've set up an all-Wales forum. It's interesting because, in Cardiff, it's run by the GP service; in Newport, it's run by mental health; in Swansea, it's run by health visiting; and in Wrexham, it's slightly different. So, I think it's really important that we all come together and work across Wales. It has been difficult tying up; if they are dispersed elsewhere, particularly outside of Wales, that can be tricky, but we're aiming, really, for them to have continuity of care.
But there's still an issue, then, about people who are here—who aren't necessarily seeking asylum—to try to get that message out to those communities, to break down that stigma, in, perhaps, their own language as well.
Yes. It's very, very challenging, I have to say, because they come in, they don't know their diagnosis. They may have HIV, hepatitis B, hepatitis C and TB. So, it's a case of diagnosing them and giving them that support and then linking them into care. And it's also the ones who go underground, who we have to, sort of, try and get to.
Hapus? Reit, mae'r adran olaf o gwestiynu o dan law Dawn Bowden.
Happy? The final section of questions is from Dawn Bowden.
Thank you, Chair. I just wanted to briefly take you back to the prison service a moment—very interesting what you were saying—and, obviously, the kind of different practices, maybe, in different prisons. So, there is, presumably, some kind of need for more consistency around the way that we deal with things in prisons. In Parc prison, they've got a BBV nurse. Would that be a way forward, if there was a BBV nurse in every prison?
What we aim to have is BBV teams in every prison—
—so that people with special interest—. So, we have one in Cardiff. Unfortunately, at the minute, there's a problem with staffing capacity. So, they're taken off the BBV roles—
—to do everything else. So, there is a problem. I know that they've done an awful lot of work in Parc prison with my colleague Hayley and there's a designated BBV nurse, and that's made a big difference. So, as I said, for me, it's making it everybody's business so that, yes, you can have a core BBV team, but, again—. I work very closely with nursing associates at the prison and the officers so that they're aware of it. So, if they come through reception and they might ask, 'Do you have hep C?', they usually tell them and then they e-mail the NA and fill them in.
And do you have any issues with the uptake of the tests with prisoners? Do any of them object to having the tests, refuse to take the tests?
Some of them do, but, again, it's how the test is offered, and the reason they opt out is usually because of ignorance and fear. But, now, as I said, it's getting that message across that everybody—. You come into the prison, you can expect to have a test. It's worth having a test, and we can cure it.
Because what the Hepatitis C Trust told us was that, in circumstances like that, and, actually, in wider circumstances, peer-to-peer support is quite important. Is there any of that kind of work going on, not just in prisons, but more widely, that you know about, raising awareness and—?
We know that that's a really effective way forward. I think they've secured funding for investment in Wales for a peer-to-peer programme. So, there isn't specifically. We've had a number of initiatives like the 'I'm worth...' campaign. So, we've got a number of individuals who have taken on that role to, sort of, raise awareness, but we could have a lot more if it was incentivised. So, a lot of the people who we've cured now, the very hard-to-reach people, they want to do it. They're really proud of it, that they've done that and that they've been cured themselves.
And share their experiences. But we definitely need more peer-to-peer work in the prisons and in the community.
Sure, okay. Just one question to the RCN, if I might, Lisa: what are your thoughts about the Community Pharmacy Wales recommendation about having BBV nurses in community pharmacy collective working schemes? So, we'd have one every—. I don't know where we're going to get all these people. We seem to want to have somebody everywhere. [Laughter.] But I'd just be interested in your thoughts on that and whether you think that would work.
Yes. I mean, I'm sure Delyth can come in with the specific point, but what I would say is it does go back to the more general point here about workforce planning, which is, if you are going to develop a national plan on an issue such as this, then it should have an accompanying workforce plan. That workforce plan should include succession planning and look at the consistency of approach across areas. That is what we are missing in Wales at the moment. We issue strategies or plans and standards, which are often excellent, but they don't have an accompanying workforce assessment with them. So, there's a general point here, which is really well made, which is: how many do we need? Is it 15, 20? They may not be very large numbers here, because you could make a huge difference with a senior grade nurse who then is responsible for providing education to colleagues, cascading that information out, doing that collaboration work. So, you're not necessarily talking about extra hundreds, you may literally be talking about 10 or 20. But, specifically, about the location in the pharmacy, then, clearly, all sorts of variety of locations can be really helpful.
We've got a newly appointed pharmacy lead who's taking this forward to roll out throughout Wales, Paul John, and I'm sure Brendan will elaborate on that this afternoon, but it's going to be a very interesting—. We know it's worked elsewhere, in Scotland, for example.
But would these necessarily need to be dedicated to just dealing with hepatitis, or the blood-borne viruses, or would they be nurses who are in a general setting, whether in the community or elsewhere, who have the ability or the experience, the expertise, to be able to deal with this as well? Would it be a mix of both?
A mix of both, really, I think is the approach. You don't need a clinical-level nurse specialist on every occasion, but having one of those roles then can actually generate nurses, as you say, who have got that education and that actual awareness and so forth, and then they can have that special interest.
Sure. I understand. Okay. Just a final question from me, Chair, is just to ask the panel, really, what they see are the most urgent priorities that we need to be addressing in this area at the moment. The message from this committee back to Welsh Government would be what in terms of priorities?
Well, I'll go back to our initial point, which is around a strategy specifically in this area, and focusing the investment on the creation of front-line professional posts who can go out, see, assess, treat.
And liaison from those special services with GPs because most GPs will either have a very small number of patients with hepatitis C, or, if you're working in an inner city and you have a high drug-using population, or a high level of immigrants, then you will be aware of it.
And protected time for learning for all professionals.
General availability of spot testing.
Reit, dyna ddiwedd y cwestiynu, dyna ddiwedd y sesiwn, felly. Diolch yn fawr iawn ichi am eich presenoldeb. Diolch ichi unwaith eto am ddarparu’r wybodaeth ysgrifenedig ymlaen llaw. Mi fyddwch chi’n derbyn trawsgrifiad o’r trafodaethau yma er mwyn ichi allu cadarnhau ei fod e'n ffeithiol gywir. Ond gyda chymaint â hynna o ragymadrodd, diolch yn fawr iawn ichi. Gallaf gyhoeddi i’m cyd-Aelodau y cawn ni egwyl rŵan am 10 munud tan 11:10 cyn i’r tystion nesaf ddod. Diolch yn fawr.
Right, that's the end of the questions and the end of the session, so thank you very much for attending. Thank you once again for providing us with the written information beforehand. You will receive a transcript of the proceedings so that you can confirm it's factually correct. So, with those few words, thank you very much. I can announce to my fellow Members we'll have a break now of 10 minutes until 11:10 before the next witnesses attend. Thank you.
Gohiriwyd y cyfarfod rhwng 10:58 ac 11:15.
The meeting adjourned between 10:58 and 11:15.
Croeso nôl i bawb i adran ddiweddaraf y Pwyllgor Iechyd, Gofal Cymdeithasol a Chwaraeon yma yng Nghynulliad Cenedlaethol Cymru. Dŷn ni wedi cyrraedd eitem 4, rŵan, a pharhad efo’n hymchwiliad undydd i mewn i lid yr afu math C—hepatitis C. Dŷn ni wedi cyrraedd sesiwn dystiolaeth gyda’r rhwydwaith firws mewn gwaed—blood-borne viruses network.
Felly, i’r perwyl yna, dwi’n falch iawn i groesawu Dr Brendan Healy, cadeirydd y blood-borne viruses network, ymgynghorydd mewn microbioleg a chlefydau heintus ac arweinydd cenedlaethol ar gyfer hepatitis; hefyd, Dr Ruth Alcolado, dirprwy gyfarwyddwr meddygol, bwrdd iechyd prifysgol Cwm Taf; Gavin Hardcastle, nyrs glinigol arbenigol hepatitis, bwrdd iechyd prifysgol Aneurin Bevan; a hefyd Dr Chinlye Ch’ng, gastroenterolegydd ymgynghorol, bwrdd iechyd prifysgol Abertawe Bro Morgannwg yn Abertawe. Croeso i'r pedwar ohonoch chi.
Diolch yn fawr iawn am eich tystiolaeth ysgrifenedig ymlaen llaw. Mae Aelodau wedi'i darllen mewn manylder dwys. Felly, yn ôl ein harfer, awn ni'n syth i mewn i gwestiynau, ac mae'r cwestiwn cyntaf gan Helen Mary Jones.
Welcome back, everyone, to the latest session of the Health, Social Care and Sport Committee here at the National Assembly for Wales. We have reached item 4, the continuation of our one-day inquiry into hepatitis C. We have reached the session with the blood-borne viruses network.
So, to that end, I'm very pleased to welcome Dr Brendan Healy, chair of the blood-borne viruses network, consultant in microbiology and infectious diseases, and national lead for hepatitis; also Dr Ruth Alcolado, deputy medical director, Cwm Taf university health board; Gavin Hardcastle, hepatitis clinical nurse specialist, Aneurin Bevan university health board; and Dr Chinlye Ch’ng, consultant gastroenterologist, Abertawe Bro Morgannwg university health board in Swansea. Welcome to the four of you.
Thank you for the written evidence that you have already submitted. Members have read that in great detail, so, as is usual, we'll go straight into questions, and the first one is from Helen Mary Jones.
Thank you. Welcome to you all, and as Dai said, thanks for the written evidence as well. Can you outline your views for us on the current level of activity and how likely we are to get to the 2030 target? I think in the written paper, you said that if things go on as they are, we're going to miss that target by 10 years.
The current situation is that—sorry, that's a bit disconcerting. The current situation is that we've had to move from a position where we were testing and treating patients in a traditional model, and we're now changing the way we find patients, so we're moving out into the community and testing them in a different environment. And that involves a change in service. So, it's not surprising that we're a little bit behind last year and this year in terms of reaching our minimum treatment targets per health board.
That said, we really need to start hitting those minimum treatment targets if we're going to get anywhere near elimination. So, the modelling that shows that we will miss elimination by about 10 years is based on the fact that, over the last two years, we haven't hit that minimum treatment target. If we hit the minimum treatment target, it's predicted, on current data, that we'd miss elimination by about 18 months. But, that wouldn't be that concerning, because there's still quite a little bit of uncertainty around seroprevalence, which will become—and the modelling will become more refined, as we go forward.
We've done a lot of work to try and drive us towards elimination, and from a central perspective, we've introduced a national protocol for testing in community pharmacies, which should increase diagnosis in at-risk populations significantly. We now need to deliver that strategy. We've also got key performance indicators introduced for drug and alcohol services to increase testing in that environment, and we now need to deliver against that strategy. If we do deliver against those strategies, in my opinion, what we then need is the health boards to be sufficiently equipped within the blood-borne virus teams to deal with the patients that we're diagnosing. So, I think we've done a lot of work in terms of pushing from the centre to improve diagnosis. At the moment, I think we're not fully adequately resourced at the blood-borne virus level to pull those patients through as we identify them, and that's the next key piece of work that I think we need to achieve.
So, at the current trajectory, if we stayed as we are at the moment, we would miss elimination quite clearly, I think. If we start to deliver on the strategies that we've put in place, if we equip the blood-borne virus teams adequately, then I think we could rapidly turn that situation around and then be back on target to achieve elimination.
Yes. I think I'd just say, when Brendan says that the teams need to change, I think the issue for us is that what we've done, as you said, is treat those who are already on our books, already engaged with healthcare, and so they're relatively easy to reach. So, what we've got is the more difficult to reach communities, and they are more costly to reach because if you sit in a clinic, you can see seven, eight, nine, 10 people. If you go out into the community, you might only see two in an afternoon. So, there is a cost to moving things out into the community, but it will undoubtedly be necessary if we're going to hit those targets.
Even in the community, which we do a lot of, the problem with this client group is that, although you see them in the local drug service and you co-ordinate the appointments through the drug service, they still may not turn up. And that's a real problem in terms of 'did not attend' rates.
Looking at the ABMU health board, my colleagues used to have five patients every week, but now they only have one or two. So, most of these patients are now out in the communities, so we have to certainly send our staff out there, but we just don't have enough staff to do so.
Thank you. Can you give us some perspective on how Wales is doing in comparison with the other UK nations? And are there any kind of initiatives—is there anything that you are aware of, thinking about what we might want to recommend to Welsh Government? Are there any lessons we can learn from practice elsewhere?
From my perspective, Wales is in a very good position from an access-to-medication perspective. From the beginning, we've signed up to transparent and equitable access to medication across Wales, and we've achieved and delivered that year on year. Medication is available based on clinical criteria and is clinically led, and I think it's reasonable to say that we are leading the way in terms of access to medication and clinically based decisions to make sure that patients get the right treatment for them. So, that's a sort of feather in our cap, if you like.
Scotland started their blood-borne virus strategy before us. So, in terms of the number of patients diagnosed, they are ahead of us by virtue of the fact that they started sooner than us. So, I think they've got more of their population identified and diagnosed. If you look at Australia, they're in a similar position; they started sooner than us so they've got 80 per cent of their population identified. One of the reasons that we're struggling in the last two years is because we are a little bit behind in terms of identifying those people who are infected. We've got a bit of catching up to do, so I think that's hopefully achievable through the measures that we've already discussed—community pharmacy testing and drug and alcohol service testing.
I think our treatment rates are probably approximately comparable to what England are achieving at the moment. We would like to perform better than we are performing at the moment. As we've said, we want to achieve those minimum targets. I'm confident that, because of the way the network is set up and because of how well we work together, if we can get the systems in place in terms of testing, if we can get appropriate resourcing of the blood-borne virus teams, I think we could be in a very, very strong position from a UK perspective in terms of delivering against elimination.
Thank you, Chair. We've heard from a number of stakeholders, including the Hepatitis C Trust that, following the Welsh health circular, we perhaps ought to have a national comprehensive elimination strategy so that we get to the target date of 2030. I just wonder what your thoughts on that might be.
I would support having a comprehensive elimination strategy. I think it kind of aligns with what we are already saying in terms of the fact that we want to make sure that things are adequately resourced. We've done an amazing job in getting to where we've got to through things that happen in the NHS every day—you know, individuals working hard, doing their best under the resources that they have. I think that, with the proper resourcing, we can go even further, and I think that a comprehensive strategy would help us achieve that. I don't necessarily think there's a one-size-fits-all strategy. So, for example, the challenges of finding patients in Cardiff might not be the same as the challenges facing Hywel Dda, for example. So, I think what we need is a strategy that identifies the sort of personnel that we need in place, the sort of work that we want to carry out, but then individually developed local plans aligned with that overall strategy.
Yes. And really, for me, the national strategy is another way of helping to ensure that the programme is properly resourced.
Yes, I would agree that it would be really useful to have a national strategy, and I think what it probably needs to include is what resources need to go to underpin the strategy. But I would also suggest it probably needs a toolkit of recommended methodologies because, as Brendan said, there are very different challenges in different areas, but what we do have, particularly from Australia and Scotland, are pretty good ideas of what sort of methodologies work in different areas. And so, whilst we can all change them slightly to fit with our local models, it would be really useful to say, 'If you're introducing this sort of model, these are the personnel that you might need and that's the sort of investment.' And I think that would be quite useful—to have an underpinning toolkit under any strategy that we might write.
I agree with both of them. At the moment, even in ABMU, the model used in Swansea and the model used in Neath Port Talbot are completely different, and in Swansea we have more homeless people that we have to reach out to. In Neath Port Talbot, we have problems with transport. So, we have to send nurses out there now to the community clinic to try to capture them. Across Wales, we can have different models, and a national strategy to underpin all this would be quite helpful.
So, a national strategy, but underpinned by local plans to deal with the demographic of a particular area. I understand. That's helpful, thank you.
I just wanted to pick up on Dr Healy's evidence, because you highlighted that there was a focus on the need to be increasing the number of at-risk people to be treated and tested—that was fairly self-evident—and that to do so you said required appropriate investment in services. I understand that as well. So, have you got any idea of the level of additional investment that you think might be needed to achieve what you set out in your evidence, at this stage anyway?
That's quite a complicated question to answer. It would have to be costed out in detail, because it involves costing personnel, simple things like dried blood spot cards, laboratory testing, medication. As I said, from a medication perspective, we're probably in the best position that we could be. So, I couldn't just give you a figure; it would have to be costed out.
You'd need to do some work on that, I guess. But have you had any conversations at this stage with either Public Health Wales or Welsh Government, or have you just said that, 'At this point, we know that we need this to be resourced, and then there's another stage that we need to go through with conversations with other bodies', I suppose.
I did at one time try to roughly cost out everything that was required, based on a central standard model. I can't remember what the figure came to. I think—. No, I'd rather not quote something and get it wrong.
That's fair enough, but you haven't specifically had conversations with Public Health Wales or Welsh Government about that up to now.
I just wanted to ask you about awareness levels amongst health professionals of hep C. We took evidence from the nursing profession and the GP profession, and I think it's fair to say that both professions said that it's quite difficult to get engagement with some of the resources and tools at their disposal, simply because they're firefighting, obviously, on the front lines dealing with all of the other day-to-day pressures. To what extent do you think that there's some work to do on that front?
I think that there are a number of things. So, we do need to do some work on that front, but what I would say is we need to look at where it's most cost-effective to put the work in, because large numbers of our clientele are not actually in touch with their primary care physicians or with other mainstream health bodies, whereas, actually, a lot of them are in touch with needle exchanges with pharmacists, and so we need to think about who is best to target. GPs do need a degree of awareness, because, actually, they're likely to be the ones that are going to pick up the ex-intravenous drug user. But they should be fairly clearly known in their practices. They're usually fairly well documented, and we probably need to put a bit of education there, probably to the practice nurses rather than necessarily the general practitioners. But I think we really need to focus on where our clientele are, and then focus on those people around them.
And the question is: do we just limit this to healthcare, or is this health and social care? An awful lot of our clientele have social care input, and it would be a good opportunity to try and join up some health promotion messages, because it's going to be part of a health promotion thing, to say to people, 'We can see that you've got these activities, these risk factors going on in your life; what are the things that we can do to improve your quality of life?' And that's part of social care as much as it's part of healthcare.
Would you accept, then, that the current awareness-raising regime, as it were, within the current interventions that the Welsh Government has been taking hasn't really been as effective at getting those wider messages out beyond the health front line, not just to the health front line, which is obviously struggling to adapt to this, but also beyond?
Yes. I would say that we need to be really careful about targeting, because when we have put out very generic information, what we tend to get is the worried well. And what we want to do is get out targeted information to targeted client groups—so, the patient level—but also, as I say, to those sorts of health and social care professionals who are likely to be interacting with those groups rather than a more generic awareness-raising campaign, which I'm not sure is—
We've got our liver disease action plan in Wales. It's shelf life is about to expire, at the end of 2020 or in 2020. There's no successor plan in development, as I understand it, at the moment, but perhaps you can tell us differently. It's been suggested to us, in your evidence and by others, that there are some key posts associated with that plan, and, obviously, people in key posts who are highly sought after are highly mobile and could disappear along with the cumulative knowledge and experience that they can bring to bear. How important is it that a successor to that plan is in place as soon as possible, and to what extent does the successor plan need to ensure that there is a sufficient focus on hep C in particular, if we're going to achieve this ambition of elimination by 2030?
They're all looking at you, Brendan. [Laughter.]
So, for me, it's critical that there's ongoing support for the central roles that we have in place. We've had tremendous success with the blood-borne virus plan, which then became part of the liver disease implementation group. The successes of that group are phenomenal in terms of network, equitable, transparent access to care, savings to the NHS around procurement, equitable access for health boards to those savings—so, all health boards getting the same price around medication. And it's been a huge success.
If we're to achieve elimination, a lot of what we've achieved in terms of the central pressure that I described around testing in community pharmacy, key performance indicators—. We've got a point of care test lead who works on a national level to increase testing in a variety of environments. We need to have those individuals in place so that we can get those strategies working in all the health boards, and I think it would be very hard to keep that central progress going without those individuals in post. And for me, the strategy involves both the central work and the local work. We're just in a position now where we're getting very good top-down pressure to start identifying people. We've identified that we need to improve the blood-borne virus team so that we can pull those patients through at the other end, but if we remove that just as we're starting to pull them through. I think it won't work so well.
Then, in terms of blood-borne virus and liver disease, liver disease is a huge problem. I'm not a hepatologist, I'm an infectious disease doctor, so I can talk much more about hepatitis C and blood-borne virus work. But I think, from a population level, you want to support programmes that improve the health of the population. The blood-borne virus programme, by virtue of its success, is able to keep rolling in a certain way. So, I'm not sure that it would necessarily need to be protected within a liver disease implementation plan, because I think we've got good traction as a result of what we've achieved to date.
To what extent are the Welsh Government discussing a successor to the current delivery plan with you? Are they? Is there any communication? Have you had any reassurances?
We haven't had specific reassurances, and I have to say, having looked at some of the delivery plans, the problem with a lot of the delivery plans is actually there's too much overlap. The big things in the liver disease delivery plan, on a population basis—there's viral hepatitis, which is actually quite small but is highly effective, and then the major thing within liver disease is non-alcoholic fatty liver disease. The overlap in the approach to managing those patients, identifying them and treating them, is massive with the cardiovascular disease delivery plan, the diabetes delivery plan and the obesity delivery plan.
I feel that the way delivery plans have worked up until now has been really quite effective, but I'm not sure that having disease-specific delivery plans is necessarily the way forward. Most of our patients have multiple comorbidities related, actually, to obesity. That's the big group of patients where we need to think about how we target both primary and secondary prevention, identification and then managing complications of obesity. That will do probably more for prevention of liver disease than necessarily renewing a liver delivery plan in the same form that we have it.
But there needs to be some urgency about whatever's going to succeed it. You would agree that some certainty is needed around those key posts that underpin the progress that is being made.
Dr Alcolado makes a very good point. Non-alcoholic fatty liver disease is going to be a major problem here. About 25 to 30 per cent of the population has fatty liver. Among those, about 6 to 15 per cent have what we call NASH—non-alcoholic steatohepatitis—which is significant liver disease. This group needs progress. The number with NASH I calculate to be the same as the number of diabetic patients in Wales. So, if we don't sort it out now or have a plan to manage this problem, we've got a huge problem. In America, we're already seeing non-alcoholic fatty liver disease as the No. 1 indicator for transplants for females. It's only second to alcoholic liver disease. So, it's catching up. We really have to do something about it.
As Dr Alcolado points out, it is a metabolic syndrome. It not just affects the liver but affects the heart and affects the pancreas. Therefore, it should be seen in all different specialities. What we need is to have a joined-up approach to this, to have all these specialties come together to manage these patients. In fairness, pharmaceutical companies have already done that. They have come up with medicine that can not only treat diabetes but also NASH. They can also treat diabetes and heart disease at the same time.
Thank you. Dr Healy, you've repeatedly said in your evidence that you think more investment is needed in numerous areas, really, to achieve the elimination target. Are you able to give us any kind of rough idea of how much money we're talking about and whether you've had any discussions with Welsh Government or Public Health Wales about this?
No. Similar to the answer I gave before, it's complicated to work out exactly how much money is involved, because it involves a lot of different services. We do know, from my perspective, that we need to resource the blood-borne virus teams more effectively to enable them to test and treat in the community. The investment required for that is relatively small. We're talking specialist nurse level—maybe two community nurses per health board, helped by band 4 level staff. So, on an annual basis, what would that be—£250,000, £300,000?
No, not even that. I would say that, in addition to that, you probably want some pharmacy time, particularly if you can get prescribing pharmacists. So, you're probably talking £120,000, something like that—£130,000 per, I don't know, 400,000 of the population, so depending on the size of your health board, it will be—.
I did, last year, write to the chief executives with some suggestions around how they might invest in the teams, which included community nurses, band 4 workers and pharmacy time, but costing out the whole potential cost around testing, dried blood spot testing, lab time—all of that—would require a level of detail that I don't have for you.
Well, they don't directly respond to me, so I write to them making suggestions and then they're responsible then for implementing things as they see fit.
You've said some really positive things, Brendan, about the access to medication and the access to testing, but we've heard concerns about local health board senior management discouraging hepatitis teams from exceeding the treatment targets and potentially putting caps on treatment rates. Now, the people who gave us the evidence did say that that was anecdotal, but you've also said in your evidence that it's imperative that there is no cap. So, could you respond to that? Are you aware of—is that a concern that you would share, or does that feel like—?
So, it wouldn't be unexpected if their predicted expenditure was going to be exceeded for that to raise a question within the health board. As far as I'm aware—I think I'm right in saying that, as far as I'm aware, nobody has been told not to treat. I think I'm right in saying that. But that's at a time when, at the moment, we're not generally exceeding or meeting our target. So, looking ahead—and, within my evidence, that's what I recognise—if we started to be very successful and started to not just meet target but exceed target, it's critical that the health boards understand that this is an elimination agenda and there is no sense in saying, 'Well, you've hit your target and that's your ceiling and we're not doing any more this year; we'll wait till next year', because the more patients we treat in one year, the fewer patients we have to treat overall because, whenever you treat a patient, you reduce the risk of onward transmission as well. So, from my perspective, it's very important that we get that message right so that health boards understand that the drugs are very cost-effective. They were cost-effective when they were much more expensive than they are now. So, I think that, if health boards understand the cost-effectiveness of the medication and they understand the purpose of what we're trying to do—in other words achieve elimination—and they understand that, by treating more people in one year, you treat fewer people overall and the year after, then there's no reason why they wouldn't be on board. But we do need to make sure that we get that messaging right and that the health boards are on board to support that.
I would say it's purely around financial planning, isn't it? Brendan is quite right that the more we treat early, probably the fewer we're going to treat in the long run, because of the issue of ongoing transmission. But people have to set budgets, and you've got to know how many you're going to be planning to treat, and you do that by the knowledge of what your service can manage. I would say this, with my deputy medical director hat on, wouldn't I? But nevertheless, I agree with Brendan: we should be having a minimum target, and we should then be saying, within our financial planning, we have to say, 'And we would anticipate that it would be great if we could exceed that by 10 to 15 per cent', and then you budget on that basis. And we haven't done that, because what we've set is a target to treat, up until now, and what I think we need to change to, and if we had a strategy document, it would be clear that this would be our minimum target to treat—. So, at the moment, health boards are working with a target to treat, and that's what they budget for, and I think the wording needs to change around that.
It also has to be set as a minimum target because, as we alluded to earlier, with the modelling, even if we were achieving the 900 minimum target per year, the modelling suggests we'd miss elimination by about 18 months. So, it wouldn't make any sense to keep that as the ceiling.
I did have a conversation with our finance department, because they do not understand the concept of a target. They think that once we achieve our target, whatever we treat is going to cost them more money. Year on year, we achieve our targets and beyond. I told them this year, 'We haven't reached our budget', because the drugs budget was set at the time we received the drugs in the early years. It was more expensive then, but things have changed now and moved on, so it's actually more cost-effective to treat patients with the drugs that we have now.
Mae'r adran olaf o gwestiynau o dan ofal Jayne Bryant.
The last section of questions is from Jayne Bryant.
Thank you, Chair. In your opinion—. We've heard some evidence this morning around hepatitis C and prisons and testing people via substance misuse services. What further action do you think is needed to take place in both the substance misuse service and prisons?
I think in the prisons we just need to increase the number of patients tested. I think Brendan tried out this strategy in Parc prison, using a new technology where the patient can be tested and found to have a positive polymerase chain reaction on the same day, and be treated then, rather than—. The current strategy is that we check, send the card away, wait a week or two for the card to come back, and then test the blood for PCR and then send it away, and then wait for the results to come back. In Swansea prison, it wouldn't happen, because the prisoner would disappear; they'd be gone to somewhere else. So, we can't even initiate treatment there. So, we just need the strategy that we have here now, so we can test and know the patient has a positive PCR at the outset, and this is what we've been trying to do now in Parc prison, to see whether it works or not.
It's difficult for me to comment, really, because our prisons have quite low prevalence rates. A lot of our prisoners come from other prisons and they've already been treated. It's certainly important that the prisons link up that prisoner with community services if they're going to be released during their treatment course, and one of the problems we face is that prisoners get released with very little medication. Ladies are a particular problem because they're in prison outside of Wales. That's an area where the communication isn't always good.
So, for me, if we're going to achieve elimination, the first step is to make sure everybody gets tested, because until we've tested everybody—the at risk, I mean—in the at-risk population, we won't know who we need to treat. So, we need to get prisons set up to test everybody. We need to get drug and alcohol services set up to test everybody. That involves bringing those services on board to help them understand what we're trying to achieve, why we want to find these patients, why it's effective to treat them—both cost-effective and in terms of onward transmission. But then I think, as I said in my evidence, they also need to be appropriately resourced, because a lot of what we've achieved so far has been on the back of convincing people that it's a good thing to do—them getting on board and starting to do it because they want to help patients—that's what people get involved in healthcare for. But unless it's resourced, it's very fragile, and then as soon as that individual—or individuals—are, for whatever reason, indisposed, or another pressure comes along, then you can quite rapidly lose that testing. So, get people on board, resource it properly so that there's people there to do the testing, and then, as previously discussed, we need a structure that enables us to treat those patients wherever they are. And that goes back to what we were discussing before about having the right infrastructure and resource for the blood-borne virus team to work around the treatment side of things.
That actually takes me on to my next question, which is about key messages, but I think you've been quite clear about the key messages there. Are there any more key messages you'd like us to take back, or perhaps you'd all like to—?
I would say that the key message that we're trying to get out now, certainly to our third sector partners, is that this is really worth doing. So, a lot of people have still got the memories of some of the really difficult treatments that we've had for hepatitis over the years and still are worried and saying to patients, 'Are you ready to have that treatment yet? Are you ready to be tested?', whereas actually the more information you get out there about actually how easy it is now, how well tolerated treatments are, how short the treatments are—I think we can get much more of that information out there and people will understand that this is actually a really positive move, and, for many patients, actually, a start to one of the things they want to do to move on in their lives. And if we can get those key messages out to our third sector partners and they can understand the rationale for doing it, then I think we will have got some really important key information out there. I'm not sure that it's quite embedded yet.
Another key message for me is that, unfortunately, sometimes, infectious diseases come with a stigma. So, we've seen that with HIV, you see it with TB in some communities, and you see it with hepatitis C. A key factor in getting rid of stigma is if there's a treatment available. For me, I'm really keen to try and change the attitude towards hepatitis C from one of 'If you've got it, then you're stigmatised' to one of 'If you've been tested, you're being responsible because you're then able to get treated and prevent onward transmission.' So, that would be a key message for me: get tested, get cured, you're the responsible individual by going ahead and doing that.
Are there any other final points you'd like to make that we haven't covered in our questions, or have we—?
I think it's the thing that Mr Miller mentioned about: it's about the staff disappearing from the health service here. I think it's very important that we have a strategy to keep the staff in Wales. At the moment, we're trying to make a business case to appoint a number of doctors in ABMU, but I can't find any suitable candidates at the moment within Wales in training. I've talked to a lot of centres in England; 'Wales—where is it?' They don't want to come, and that's the problem. So, if we don't train in-house, we're going to have more problems later on.
We're fortunate to be here representing a big network of individuals—blood-borne virus nurses, secretaries, pharmacists, other consultants—and I think it's fair to say that we're really proud of how that network has performed. And so we'd just like to acknowledge—I'd like to acknowledge, at least, and I'm sure everyone else would like to—that we're here representing an amazing group of individuals.
Thank you. That's an appropriate place to end the session, I think, on a positive note.
Diolch yn fawr iawn i'r pedwar ohonoch chi am eich tystiolaeth ac am y dystiolaeth ysgrifenedig ymlaen llaw. Wrth gwrs, mi fyddwch chi yn derbyn trawsgrifiad o'r trafodaethau yma er mwyn i chi allu gwirio eu bod nhw'n ffeithiol gywir. Ond gyda hynna, dyna ddiwedd y sesiwn. I'm cyd-Aelodau, mi fyddwn ni'n torri nawr tan 12:30. Diolch yn fawr.
Thank you very much to the four of you for your evidence and for the written evidence that you submitted beforehand. Of course, you will receive a transcript of the discussions to make sure that they are factually accurate. But that's the end of the session. We will now break until 12:30—to my fellow Members. Thank you very much.
Gohiriwyd y cyfarfod rhwng 11:54 a 12:34.
The meeting adjourned between 11:54 and 12:34.
Croeso nôl i bawb i adran ddiweddaraf y Pwyllgor Iechyd, Gofal Cymdeithasol a Chwaraeon yma yng Nghynulliad Cenedlaethol Cymru. Rydym ni wedi cyrraedd eitem 5 erbyn rŵan: parhad efo'n ymchwiliad undydd i fewn i lid yr afu math C—hepatitis C, hynny yw. Rydym wedi cyrraedd y sesiwn dystiolaeth gyda Iechyd Cyhoeddus Cymru. Felly, i'r perwyl yna, rwy'n falch iawn i groesawu Dr Giri Shankar, prif ymgynghorydd ar gyfer diogelwch iechyd a rheoli clefydau trosglwyddadwy, Iechyd Cyhoeddus Cymru; Dr Jane Salmon, ymgynghorydd diogelu iechyd, Iechyd Cyhoeddus Cymru; ac hefyd Dr Stephanie Perrett, nyrs arweiniol ar gyfer iechyd a chyfiawnder, rhaglenni diogelu iechyd, Iechyd Cyhoeddus Cymru. Croeso i'r tri ohonoch chi. Fel dwi wedi'i grybwyll eisoes, diolch yn fawr iawn am y dystiolaeth ysgrifenedig ymlaen llaw. Mae'r Aelodau i gyd wedi darllen hwnnw, felly yn ôl ein harfer fe awn yn syth i mewn i gwestiynau. Mae gyda ni rhyw dri chwarter awr. I ddechrau, mae Dawn Bowden.
Welcome back all to the latest session of the Health, Social Care and Sport Committee here at the National Assembly for Wales. We've reached item 5 now: continuation of our one-day inquiry into hepatitis C. We have now reached the evidence session with Public Health Wales. So, to that end, I'm very pleased to welcome Dr Giri Shankar, lead consultant for health protection and communicable disease control, Public Health Wales; Dr Jane Salmon, consultant in health protection, Public Health Wales; and also Dr Stephanie Perrett, lead nurse for health and justice, health protection programmes, Public Health Wales. Welcome to the three of you. As I've mentioned already, thank you very much for your written evidence beforehand. Members have read that, and as usual we'll go straight into questions. We've got about forty-five minutes. To start, Dawn Bowden.
Thank you, Chair. Good afternoon. We heard some very optimistic messages from you back in July about the elimination target, but noted in your most recent evidence that you think on the current trajectory we're probably going to be about 10 years behind that. What do you think we perhaps need to do now to get back on track for the 2030 target?
If I can take the first question. Thank you very much and, first of all, thanks for inviting us to provide evidence to this committee. As we've heard from other sessions earlier this morning, I think the modelling data that we have now got suggest that, at the current treatment rate, it is true that if the same trajectory continues, we will not hit the 2030 elimination target. But it is important that we've got a real opportunity—that if we are able to identify more people who are infected and bring them back into the care system so that the treatment numbers are increased, we will be in a position to reach that target. And for us to do that, I think it needs a concerted effort. Perhaps other colleagues might have already spoken about it in other sessions. Having a focused strategy on an all-Wales basis, which encompasses all the key interventions, and identifies the roles for different stakeholders with appropriate local delivery plans, is something that will really help us refocus our attention and bring us back to the target of elimination by 2030.
I think taking the testing and the treatment processes to the individual to enable them to access those services is quite critical here, because this is a very vulnerable population in part, really.
So, getting out and identifying them, rather than waiting for people to come in. But you're clearly saying that a national strategy would be key to getting us back on track for that target. That's helpful. Do you think there is anything that we can learn from other countries and what they're doing in terms of elimination, particularly in the UK? We've heard a little bit of evidence about what's happening in Scotland and England. Actually, we heard some evidence about Australia as well earlier on. But is there anything you think that we can learn, if we're going to have a national strategy, from some of the other countries in terms of how we might improve things here?
Most definitely. We've got some unique advantages here in Wales. We've got some really good data collection systems, particularly in relation to people who inject drugs. So, we've got a better estimate. For example, if you look at the epidemiology of hepatitis C, 90 per cent of the infections actually happen among people who inject drugs. So, we need to have a better understanding of who these people are, where they access services and how can we capture those data, for which we have got a very unique system in Wales, which is the harm reduction database maintained by Public Health Wales, which captures that.
But when we are now progressing towards the elimination target, we certainly know that Public Health England, for example, have done more recent modelling studies to estimate the number of individuals infected with hepatitis C. Our current estimates suggest that we have about 12,000 individuals within Wales who might be infected with hepatitis C, but it would be helpful for us to actually put through our intelligence into Public Health England's modelling data to see whether our estimates actually correlate with that or not.
Okay. So, these are estimates. These are not known figures; this is just what your modelling is showing. I'm with you.
Exactly. And then we can also learn from other countries, especially in relation to the other four UK nations. We all have the same goal of elimination by 2030, so how do we monitor progress? So, the monitoring metrics could be synchronised across.
Okay, so that there's some consistency across all four nations. Okay. Is there anything either of you want to say about that?
I think we can learn across all of these. We all face the same challenges and we're all striving for the same targets. So, I think we can learn and share our expertise across, and learning from models of delivery as well—what works, what doesn't. And certainly we're well linked in with many of the other nations, and internationally as well. So, equally, we can share some of the things that we've learnt with those nations as well.
Okay. So, when we saw Dr Healy in the previous evidence session—and in the evidence that you've given yourself, you note that there's a number of new roles, including the national pharmacist lead, and Dr Healy's own position as a national lead supporting treatment programmes, which was supported and funded from the liver disease delivery plan. That's going up to 2020, but funding beyond that is a little bit uncertain. What plans do you have in place to ensure that the roles and drive for improvement continue post 2020?
I'll make a small response, and then I'll invite my colleague Dr Salmon to elaborate a little bit on that. So, it is correct that the liver disease implementation group, which oversees the liver disease delivery plan, is funded until 2020. But, more recently, in the last few weeks, we've been given to understand that there will be a further one-year extension to that plan. It is yet to be confirmed in writing to us, but this is what we've been given to understand verbally. So, that's in 2021. But, still, that doesn't give us clarity of what happens beyond 2021. So, we are in discussions with Welsh Government to see how best to take this forward, through the viral hepatitis sub-group, which links into the liver disease implementation group. Perhaps, Jane, you can elaborate a little bit on that as well.
Yes. So, that confirmation of that funding beyond 2020 to 2021 was very recent, and as Giri says, I don't think it's been in writing to us as yet. It has been discussed at a number of the liver disease implementation groups as to what is the future direction of travel for all these delivery plans post 2020, so I understand that a piece of work is going to be undertaken to determine what the future looks like, but I'm not sure exactly what the nature of that would be. But, clearly, it is something that we are concerned about. I understand that health boards have been drafting business cases to try and attempt to keep the roles that have been supported through the liver disease implementation group maintained within core funding post 2020.
So, the continuation of the delivery plan—you've said that's until 2021 now, but would you see the extension of that, or the continuation of that, sitting alongside the kind of strategy that you were talking about earlier on, the national kind of elimination strategy, almost? You'd see the current strategy that we've got, the current plan that we've got, possibly continuing, but sitting alongside the strategy, or the two things become one?
It's something that we'll have to discuss and debate a little bit because the current plan covers overarching liver disease as a whole range of issues, whereas the specific hepatitis C elimination strategy could be part of, or one bit of, an overall plan to tackle liver disease, as there are a number of other infections of the liver outside hepatitis C, plus other issues relating to substance misuse, alcoholic liver disease, non-alcoholic liver disease. So, hepatitis C could sit there, because some of the interventions that we would have to put into tackle liver disease as a whole will be generic to a number of other individual infections. And in the spirit of prudent healthcare, we don't want to have individual bits, but a specific strategy under an overarching plan.
Okay. I understand. That's very clear. Thank you. Again, in evidence that you've given, and in the evidence that we've had from Dr Healy, one of the key areas that is flagged up, inevitably, is resources, and the need for a future strategy to be properly resourced. What discussions have you had with Welsh Government about that, and about what further future investment might be needed for us to get to that target—the elimination target?
Specific to funding, we haven't had any explicit discussions on what we want to do, but we are clear that the range of interventions that need to happen—. You can look at it in two different ways. One is that there are existing interventions that need to be sustained. For example, within the substance misuse programme, the needle and syringes programme—we need to sustain that. We've got specific settings in prisons, for example, where we need to expand more than what there is currently, plus we need to have additional resources to make sure that the people who've been funded to do some of this work are able to continue to do that work, and some of the—. Perhaps my colleague Steph will elaborate a little bit on what we've done on the prison side of things in terms of increasing the uptake of blood-borne virus testing. We've seen some really good results, but those have come on the back of really hard work and the goodwill of colleagues without necessarily additional resources. So, if we put some more resources into that, I think we can achieve more.
Okay. Have you got any idea what kind of money we might be talking about? Have you done any work around that yet? 'How long is a piece of string?', I guess.
No. It is possible to cost some of these interventions, but that work is not complete yet, so I wouldn't want to put a figure on it as yet.
Okay. That's fine, thank you. I was going to ask you about the elimination strategy, but you answered that in a previous question, so I'm quite happy with that, Chair.
Well, really just to reiterate what Giri said. Obviously, the work that we've done in the prison—we've made some significant gains there, I think, in the last few years in terms of the blood-borne virus agenda, and a lot of that has been done on hard work and goodwill. And, to my knowledge, I'm not aware that the prisons have directly received any additional resource to do that, so we want to maintain those services. But we're not—. Whilst we're happy with the progress made, we're not happy that we're there yet, so there's a lot of work still to be done and the resources will need to be looked at for that.
Thank you. Can I take you to the needle and syringe programme, and could you tell us a bit more about the progress to date—there's some good information in your written evidence; we'd like to get that on record—and tell us how you plan to significantly increase uptake to deliver the improvements that you want to see?
The needle and syringe programme is a well-established programme across Wales. Currently, we've got 270 sites across Wales that deliver this programme. Fifty-five of those are in specific substance misuse settings, 215 of those are in community pharmacy settings. So, we've been able to engage the clients, the people who inject drugs, in those services, and every interaction with the service is captured comprehensively in the harm reduction database. So, that is one of the things that we can be very proud of in Wales, and it has been an award-winning flagship IT system that has been put in for improving patient safety.
Within that, Public Health Wales monitors the data that goes into the harm reduction database. We extract the data; we produce annual reports. So, the most recent report for 2017-18 suggests that we have about 25,000 individuals approximately using the needle and syringe programme, 14,000 of whom have been identified as unique regular us