Item 8 on our agenda this afternoon is a debate on the Health, Social Care and Sport Committee Report: 'Hepatitis C: Progress towards achieving elimination in Wales'. And I call on Helen Mary Jones to move the motion on behalf of the committee. Helen Mary.

Motion NDM7174 Dai Lloyd

To propose that the National Assembly for Wales:

Notes the report of the Health, Social Care and Sport Committee:  Hepatitis C: Progress towards achieving elimination in Wales, which was laid in the Table Office on 27 June 2019.

Motion moved.

Diolch yn fawr, Dirprwy Lywydd. Thank you very much indeed, Deputy Presiding Officer. I stand here, of course, in place of our much-beloved colleague, Dr Dai Lloyd, who is currently not very well. I certainly can't hope to imitate his inimitable style. I'm sure that all Members in this Chamber will join me in wishing Dai a swift and speedy recovery, and all I can do is attempt to fill his shoes on behalf of the committee, knowing, of course, that this is completely beyond me.

I'm very pleased to take part in this debate today, on behalf of the Health, Social Care and Sport Committee, on our report on the progress towards achieving the elimination of hepatitis C in Wales. This is the third of a series of short, focused spotlight inquiries that have been undertaken by the committee, and we're all very grateful to all of those who gave evidence and, as always, to the excellent team that supports our committee's work.

The committee agreed to undertake this one-day inquiry to investigate the work currently being undertaken to eliminate hepatitis C in Wales by the target date of 2030. The World Health Organization estimates that 71 million people in the world have chronic hepatitis C infections, and of the 21,000 who live in the UK, 12,000 to 14,000 live in Wales. That's a great number of our fellow citizens affected by this condition.

We know, of course, that hepatitis C affects disadvantaged and marginalised communities, including homeless people and migrant communities particularly, with almost half of the people who attend hospital with this virus coming from the poorest fifth of society.

Key things emerged in our inquiry. We know, of course, that Wales is signed up to the World Health Organization's global health sector strategy, which aims to eliminate hepatitis C by 2030. One of the tragedies, of course, of the large number of people living with this condition is that it is now completely curable. Whilst this is welcome—the signing up is welcome—a number of witnesses to our inquiry expressed concerns about whether we will meet those targets. The committee heard that not all local health boards are meeting the targets, and that both diagnosis and treatment rates will have to increase significantly in Wales if we are to achieve the 2030 target. We heard anecdotal evidence of local health board finance directors discouraging hepatology teams from exceeding the treatment targets because of financial concerns. This approach will only result in greater financial cost in the long run, and is not compatible with Wales achieving the elimination target. It is vital that caps are not placed on local treatment targets by health boards. National treatment targets should be seen as a basic minimum floor, which health boards should be aiming to exceed. 

The message from witnesses is clear—that knowledge and awareness of hepatitis C amongst the public remains low, reflected in roughly 50 per cent of patients being undiagnosed. A UK-wide poll commissioned by the Hepatitis C Trust highlighted that, of the 80 per cent who were aware of hepatitis C, less than 40 per cent knew that it affects the liver, and less than 30 per cent knew that the virus is now curable.

The committee heard that outdated information is still prevalent amongst at-risk groups, and, as such, some patients are fearful about coming forward to access healthcare, because of the difficult nature of the previous treatments. Increasing public awareness and knowledge of the virus through the development of a Government-backed awareness campaign, targeted to specialist at-risk groups, may help to reduce the effects on those who are affected by the virus. Public Health Wales told the committee that, since the Welsh Government introduced a formal policy of opt-out testing for blood-borne viruses for all those on admission to prison in 2016, the uptake of testing has increased from 8 per cent to 34 per cent. This is encouraging, and it has been a big improvement, and, in time, hopefully, Public Health Wales will reach the target of 100 per cent. However, witnesses highlighted a lack of resources for testing in prisons, and stated that, in order to make prisons HCV-free, additional resourcing and staffing is required. Recruitment and retention were also issues that were highlighted by witnesses, with some stating that lack of staff was preventing prisoners from being tested promptly.

Knowledge and awareness amongst some health professionals is an ongoing issue that must be addressed. The committee heard that patients reported less positive experiences with health professionals, such as GP and non-specialist nurses, with many saying that they had not, in fact, been offered tests. Others stated that they'd encountered low levels of knowledge of the virus from health professionals, often being given inaccurate or outdated information and advice. The Hepatitis C Trust recognises that initiatives that have been introduced to provide educational support to healthcare professionals are valuable, but says that more needs to be done. Witnesses called for protected learning time for such health professionals, and for more awareness raising. We heard that such training does not need to be time-consuming and much of it can be delivered online.

The message from witnesses was that Wales has an excellent opportunity to become the first country in the UK to eliminate this disease. However, without urgent additional action to address the uncertainty relating to the strategy and funding post 2021, the fear is that the opportunity may be lost.

So, these were our four recommendations—that the Welsh Government should produce a comprehensive, national elimination strategy for hepatitis C, with clear and ambitious targets and workforce planning built in, and provide substantial funding until the elimination is achieved. This must be done as a matter of urgency, given that the current plan ends this year, and funding for dedicated posts is only available until 2021.

Our second recommendation is that the strategy must include a targeted awareness-raising campaign to reach out to at-risk communities, and to provide additional education and training for health professionals. The Welsh Government, for our third recommendation, must write to local health board finance directors and chief executives to emphasise that the national targets for treatment for hepatitis C must be considered as a minimum and be exceeded where possible. And the Welsh Government, for our fourth recommendation, should provide additional investment to improve hepatitis testing in prisons.

We are somewhat disappointed that the Welsh Government has only chosen to fully accept one of these recommendations. We're grateful that the other recommendations have been accepted in principle. But, in fact, the Government has only agreed to write to the finance directors and the chief executives, and their response says that there are other ways to address the issues that our report raises. I will be interested to hear what the Minister has to say today, but I would urge him to look once again at our recommendations, which are strongly evidence based, and the need for a strong central lead on this is vital.

In many ways, the hepatitis C story in Wales is incredibly optimistic. We have a disease before us, or a condition before us, that is almost entirely curable, and we are within striking distance—if we apply ourselves—to being able to wipe this out. And I think that any illness or condition that we can wipe out—polio being one of them—is something that we should all celebrate, and we can do this with hep C if we all bend our minds to the task. And, Minister, I absolutely recognise that there have been some amazing strides forward in trying to eradicate hep C, or reverse hep C, in individuals. I think there have been some good strides forward in tackling certain members of our population, certain target groups, certain ethnic groups, where there's a prevalence. There have been strides forward in reducing people who use drugs and in their contamination with hepatitis C. But, of course, it's one of those things where, as you bash down one dragon's head, up comes another.

And I found one of the very interesting things that came forward from this report is how we are beginning to see more instances of people developing hepatitis C from some of the more modern things today, like having Botox fillers, about going to sports clubs and having steroid injections. And so, Minister, what I'd like to do is ask you a couple of questions first of all around what else you're going to put in place in terms of things like syringe programmes, steroid clinics. There are 270 needle and syringe programmes throughout Wales—do we need more, how will we fund it? What about the idea of having steroid clinics, so that people can understand that there's no stigma to being able to go forward and to get that treatment? Because, of course, like all these things, it's about taking away the stigma. So, very, very positive news, but we had to do this report because it is only a job half done. And I was very concerned to see that, in this report, some of our recommendations were just to be accepted in principle. And I've kind of come to the conclusion, after my years here as an Assembly Member, that, when a Government says 'accept in principle', it is always a euphemism for kicking something out to the long grass. So, I'd just like to go through some of these 'accept in principle' comments that you have.

Now, Helen Mary has already talked about recommendation 3, which you've accepted totally, which was the one about accepting the World Health Organization 2030 target. I would like to understand why you haven't followed the Scottish one of 2024, or the UK one of 2025. I just find it very interesting—we're a small country, we can get to people quickly, and I'd like to understand your reasons here. I would like to understand how the health boards will actually deliver the hep C treatment targets that are due to be introduced in April. Can we add these targets to the NHS activity and performance summary dashboard, as a way of formally monitoring progress towards elimination? You spoke in a previous set of questions about the need to have robust data, and how you felt that data was good, and I agree with you—I think that data helps us to drive our public health policy. Are we able to add that to the dashboard? Will you commit to the production of a new Welsh health circular?

I'd also like to talk about recommendation 2, and the targeted awareness-raising campaign. Now, I know from slightly bitter experience that the Government is actually quite reluctant to undertake targeted awareness raising campaigns—I've talked to you in the past about sepsis—because you feel that national campaigns sometimes do not achieve their aims. But we've hit this barrier before, and I'd like to really understand why you will not go forward with a targeted awareness-raising campaign. It's been recommended by all the players in this area—the people who go out there and actually have to deliver these services on the ground, they believe that this is a good way forward, the committee believe it's a good way forward, professionals believe it's a good way forward, but the Welsh Government doesn't. I need to really understand and would appreciate an explanation on that. 

Additional investment into prisons—now, Helen Mary has already touched upon it, but we've done quite a number of reports recently about care for prisoners, about reintegrating people into the community, about ensuring that we have minimal reoffending rates. Letting someone come out of prison feeling in good health, with a good future, a roof over their head, and a pathway forward is one of the key ways of stopping reoffending. And I simply would like to ask you to revisit your investment in prisons, because we need to get prisoner health up so that when they leave those prisons they have a better chance of staying out and a lesser chance of recidivism. Thank you.

I’m very pleased to be able to contribute to this debate, even though I wasn’t a member of the health committee during the inquiry itself. This was a subject that I was very eager for the committee to look into when I was a member of it, and I very much welcome the publication of the report on this very important subject.

Now, there is a genuine opportunity for us here in Wales to achieve this simple but very exciting aim of eliminating hepatitis C in its entirety. Yes, there’s a target from the World Health Organization to eliminate it by 2030, but we could move according to a tighter timescale. Scotland and England have already set themselves a stricter target, and the Hepatitis C Trust have said to the committee that, because Wales has a relatively low number of people living in it to find and to treat, we could be the first nation in the UK to eliminate this disease. But, of course, we need a very strong strategy in order to do that and it’s very disappointing to read the conclusions of the committee that we’re not on the right course to reach the target of elimination by 2030 even, at the moment.

The belief is that potentially half of those in Wales who have hepatitis C haven’t received a diagnosis yet, partly because of the asymptomatic nature of hep C, so people sometimes receive a misdiagnosis. Perhaps people aren't aware that they're in a risk category—people who perhaps have used drugs in the past and haven't done so for decades and think that the risk has passed; potentially, users of drugs or injections to improve their image or performance in sport, even—people who don't consider that they're using injections in a dirty way, as it were, and so who don't have access to substance abuse services and are losing out on the important messages that are shared in those contexts as well.

So, I do welcome the recommendation to have an awareness raising campaign—a targeted campaign—to target those at-risk groups as well as providing training to professional health workers. It became very clear to me over the past few years that the challenge is not to treat those who already have the disease but to find those who have the disease but don’t know it. And the Government itself admits in its response to the committee's recommendations that patients are very hard to reach. So, do let us use every means at our disposal to reach them, whether by letting people know who could be at risk; using every opportunity to test; improving the testing for hepatitis C in prisons in Wales, as the report recommends; also looking at other opportunities—testing when people register with a GP, and so on. There are many ways of reaching out to people, and an awareness-raising campaign should also let people know how easy it is to treat— and how easy it is to have the test in the first place, but also how easy it is to treat hepatitis C on early diagnosis.

There is good work being done and firm foundations laid already in many ways, and I thank those within the health system and charities and so on for the major steps forward that they have taken in this regard. But we do have to ensure that there is a commitment by the health boards and the Welsh Government to move towards elimination and we should consider targets as a minimum as well, not as a maximum, so that we can treat as many people as possible and identify as many of those as possible who have hepatitis C, and that’s to save money in the long term, as well. So, as I said, there is a genuine opportunity here for us in Wales. Please do let us ensure that everything possible is done so that we don't lose out on this golden opportunity.

I'm grateful to the Health, Social Care and Sport Committee for their report into hepatitis C elimination in Wales. As the report highlights, around 14,000 people in Wales are chronically infected with this blood-borne virus that can lead to liver failure and cancer of the liver. It is also estimated that around 12,000 people in Wales have the disease but are unaware of it or are not actively seeking treatment.

I am pleased to see the Welsh Government actively working to achieve the World Health Organisation's target of eliminating both hepatitis B and C by the end of this decade. As the Hepatitis C Trust told the committee, Wales has the opportunity to become the first UK nation to eliminate the disease, but in order to achieve this we need a more strategic approach. The trust called for a comprehensive national elimination strategy, and the health committee agrees.

The committee’s first recommendation calls for such a strategy backed up by clear targets, workforce planning and sufficient funding. While the Minister has accepted this in principle, his response states that Welsh Government policy does not favour disease strategies because of the administrative burden. We need this strategy; guidance notes simply won't cut it. Only one health board met their treatment target in 2017-18.

Public Health Wales said that the WHO target can still be met if we have an all-Wales strategy that encompasses key interventions, relevant stakeholders and local delivery plans. This is clearly the kind of strategy envisioned by the health committee and endorsed by the Hepatitis C Trust. Therefore, I urge Members to send a clear message to the Welsh Government: Wales needs a comprehensive national elimination strategy, backed by hard targets and the money to deliver it, and nothing else will do.

Can I now call the the Minister for Health and Social Services, Vaughan Gething?

Thank you, Deputy Presiding Officer, and thank you to members of the Health, Social Care and Sport Committee for their report on progress towards achieving hepatitis C elimination in Wales.

Since the introduction of new treatments in 2014 NHS Wales has treated 2,850 patients for hepatitis C, with a success rate of around 95 per cent. Access to these new and highly effective treatments has been universal and there are no waiting lists. This is a significant achievement, and yet there is much more to do if we want to eliminate hepatitis C by 2030 at the latest, as we indeed aim to do.

And I do have to pause and thank the staff, the clinical community who have undertaken the current steps we have made on hepatitis C elimination. A genuine national network of clinicians, and I've met some of those people and I am tremendously impressed by not just the work they've done to date, but by their commitment to do more and to work in a different way, as indeed the report sets out, to reach those people who have yet to take up the treatments that are available.

Key actions in relation to hepatitis C and B were originally part of the blood-borne viral action plan and are now part of the liver disease delivery plan, which is due to run until December next year. In addition, a Welsh health circular was issued to NHS Wales in October 2017, setting up a framework of actions needed at a local level to support elimination. We know what is required to successfully eliminate hepatitis C: increased testing and treatment in traditional services, in the community and in prisons. Despite its inclusion in strategies and circulars, as the committee note, investment in local services across Wales has been patchy. The introduction of formalised minimum targets—and I have heard what Members have said in the report and today—for both testing and treatment is the next step, and it will require further investment by local services.

A key performance indicator for testing and substance misuse services was introduced for area planning boards from April 2019. As a result, we have already seen testing rates increase by over 50 per cent compared to the same period in 2018. Health boards will be sent a formal minimum treatment target as part of the NHS delivery framework for next year, 2020-21. This will encourage health boards to invest in effective and sustained outreach services in order to engage with individuals who are not currently in contact with traditional services. It is these outreach services that are needed rather than, in my view, a national awareness campaign. People are unlikely to see and be motivated to take part in new forms of treatment by a traditional national awareness campaign.

Formal minimum treatment targets will require health boards responsible for the health of our prisoners to consider the effectiveness of the current opt-out testing arrangements. And I was recently delighted to hear that the micro-elimination of hepatitis C had been achieved in Swansea prison. That of course now needs to be sustained in Swansea prison, and other health boards need to look at what is required to make this happen within the prison population in their own areas.

To support the local action required, a wider range of national actions are being progressed. The hepatitis C re-engagement exercise has already resulted in 41 patients commencing treatment. This programme will continue checking old patient records and contacting patients for testing well into next year. The roll-out of the testing in community pharmacies has been slower than expected, but we'll continue to drive that agenda forward to ensure that testing and treatment is delivered in community pharmacies across Wales.

I'm happy to commit on behalf of the Welsh Government to provide annual updates, guidance and instruction to health boards where necessary. I am confident that the actions outlined will put Wales back on track to achieve elimination by 2030 at the latest, as I recognise the committee wants to see as well.

Will you take an intervention, or have you finished?

Finished, sorry. Can I call Helen Mary to reply to the debate?

Thank you, Deputy Presiding Officer, and I'm grateful to everybody who's participated in the debate. Angela Burns is right of course to highlight the new challenges, people who may not feel that they fall into the traditional groups of people who may be vulnerable to the virus. I also very much want to associate myself with what she said about the principle of 'accept in principle'. I think many of us who work on the committees in this place would rather, where it's appropriate, that if the Government doesn't fully agree with our recommendations that they simply disagree, but that's a matter of course for the Minister himself.

I think what Rhun ap Iorwerth said about being ambitious about targeting sooner, that because we are a small country, because we have responsive health services, we ought not to be content only to meet the 2030 target, but we should look to be more ambitious. I would urge, on behalf of the committee, the Welsh Government to look again at that.

Similarly, Caroline Jones's point about the need for a national strategy, I hear what the Minister says that strategies can be bureaucratic, that people can end up spending more time dealing with responding to the strategy than they do in actually sorting out the problem, but the evidence that came before us is that a particular strategy for this condition is needed, because if it's put in with a whole load of other conditions, we were told that it would get lost. 

I want to draw on a particular point in the Government's response to our recommendation about a national strategy, and that is with regard to the specialist posts. The Minister's response says that he can't guarantee that the specialist posts will continue, though he understands that they will be needed. Of course, I take the point that the Minister doesn't know what his budget will be in 2021, but it is extremely important that those specialist and innovative posts are maintained, and I hope that this Assembly can send the Minister a very clear message and ask him to prioritise that. 

Joyce Watson took the Chair.

Will you take an intervention?

I will very happily take an intervention.

Thank you very much indeed, because I take your point absolutely about the specialist posts, and I do hope that the Minister hears that, because of course one of the things we heard in our evidence very strongly was that GPs themselves—and this was from GPs and the Royal College of General Practitioners—were saying that they were missing the signs of hepatitis C. Patients were saying that, although they presented with all the symptoms, they weren't being picked up. And unless we have these specialist posts in place, I fear that more people will become missing.

I agree that that is a serious risk. This brings me on to the point that I wanted to make to the Minister about our recommendation 2, which was about targeted awareness and about training for professionals. Now, we weren't asking, Minister, for a traditional awareness campaign. We know it wouldn't reach the right people, and perhaps we can keep under review whether the approach that the Minister has suggested will be effective. But the Minister says in his written response that education and training for health professionals is already available. Well, the evidence that was placed before us, as Angela Burns has already said, made it very clear that that education and training isn't sufficient in itself. And, again, I urge the Government to keep this under review. 

The Minister is absolutely right to say that we've made significant achievements, and this was a message that was very clear to the committee, and that staff have done some amazing work. But the truth is that we need to be more ambitious if we are to eliminate this condition, a condition that we know that we can eliminate. And the committee will be keeping a close eye on the Government's progress in delivering on that target, while continuing to urge them to be more ambitious and to set a more ambitious one. 

The proposal is to agree the motion. Does any Member object? The motion is therefore agreed in accordance with Standing Order 12.36.

Motion agreed in accordance with Standing Order 12.36.