Questions now from the party spokespeople. The Conservative spokesperson, Angela Burns.

Diolch, Llywydd. Minister, phenylketonuria, which we'll call PKU because it's much easier, is a very rare genetic metabolic disorder that affects around one in 10,000 people in the UK. Patients living with PKU are not able to metabolise phenylalanine, which is an amino acid that's found in the proteins within your brain. And you're born with it, and, as soon as you are born, if you do not start to control those protein levels, it can lead to severe brain damage, thereby affecting the rest of your life. One of the ways that this disorder can be treated is by leading a very restricted diet. Now, the National Society for Phenylketonuria has come up with a number of recommendations to help improve PKU sufferers' lives, one of which is that all people with PKU should be followed up in an integrated, specialist, metabolic service led by an experienced physician and dietician. So, Minister, I wondered if you would give some consideration to adopting this recommendation, because, although the numbers are small, it does affect a significant group of people within Wales, and has long-term and absolutely devastating effects on their lives if they do not get the balance of this diet right.

Thank you for the Member's question, and I think it's positive that we're talking about some of the rarer conditions that exist. There are a number of Members across the Chamber who have taken an interest in this. I know that my colleague to the left, the Trefnydd, during her time as a backbencher, took a particular interest in rare diseases and conditions, and, in fact, on this particular issue, I've seen both David Rees, the Member for Aberavon, and the Counsel General in his role as the constituency Member for Neath, who have had constituents who are concerned about the ability to adequately provide something to help them to make choices. 

And the point about diet is well made. So, there's a challenge about what we can, could and should provide and have the workforce to do so, and actually investing in having the right number of dieticians, because this is a pretty controlled regime that people need to follow to allow them to make other choices in their lives. So, I'm more than happy for my officials and the Government, and indeed the health service, to engage with the PKU society to talk about what is possible, and, equally, where that's possible to provide, and it may well mean that we need to make different choices about investing in the training of our future workforce.FootnoteLink 

Information further to Plenary

Well, thank you for that, because that's actually quite a positive answer. I'm the current chair of the cross-party group on rare and orphan diseases here, and I was actually shocked when I met a whole group of people with PKU, because it's not just—. I think you termed it a 'pretty controlled regime'. Imagine spending your entire life living on soups and shakes, with the added disadvantage that, apparently, they taste disgusting. I was offered a sample; I did actually decline, because I could smell it before I even got anywhere near it. And it wasn't just that. These people were showing me, people with the condition, that, if they're going to eat a piece of cheese—literally, once a week, they can have a piece of cheese, which is about a centimetre by a centimetre by a centimetre. And, of course, this also has an enormous impact on their health and mental well-being as they grow older, particularly teenagers, young adults going out, having a social life, wanting to be part of normal society and just not being able to join in with the pint in the pub, the pizza down the local takeaway, or whatever it might be. 

And the other really shocking thing that I found out was that, actually, from birth, the babies have to have specialised milk, and that milk is very often not on the NHS, it's eye-wateringly expensive, and, worst of all, it's incredibly hard to get. Now, Minister, if this is something that the lack of which would be detrimental to somebody's life and long-term well-being—. Will you please also ask your officials to look at this supply situation? Because to deny a baby the right food from the moment it's born all the way through its growing life, where parents are struggling to either afford the right milk, this synthetic milk that's made, or can't even get it—because you can't order it on Amazon or whatever—is truly shocking, because that young child will actually just develop these high levels of amino acids, and, of course, in the longer term, will need more and more help from the state. So, we need to keep them as healthy as possible. And there's also just something so unfair about having a perfectly lovely little baby and not being able to get the food it needs to have as good a life as it possibly can have. 

I'm more than happy for the conversation I've offered with officials in the health service to include this specific issue around early milk supply as well. And I think there's something about—. It's a choice for the Member whether she wants to write to me in her capacity as the spokesperson for her party, or in her role as chair of the cross-party group. I'm happy to engage in either way, but I'd want to be able to share information, because I know there are other Members in this place, across parties, who take an interest in this issue as well. 

Okay. So, I'd like you to work one more miracle, and that's about a drug called Kuvan. Now, Kuvan is to people with PKU what Orkambi is to other people with conditions. Now, we've been waiting for 12 years for the National Institute for Health and Care Excellence to really get to grips with Kuvan. Earlier this month, Jeremy Hunt, the former health Secretary, called on Matt Hancock, the current holder of the post, to use the same magic to secure access to Kuvan that he used to give the go-ahead for Orkambi for cystic fibrosis. And there is a legal challenge going on by a PKU sufferer in England, currently, against NICE. It is costly, but it would make a dramatic difference to the lives of those small handfuls of people who have this really horrible condition. Minister, you're always saying that you want the NHS in Wales to follow a different path, you strive to try to be a lot more inclusive, in your view, more equitable. Will you have a real go at this, and would you consider trying to move it so that this drug, which is available in all the nations of the European Union other than Poland—I will exclude Poland—and the UK can be prescribed to patients here in Wales? Small numbers—but we can't just ignore the rare and orphan diseases and conditions simply because there aren't masses of people who need those. And you proved it with Orkambi; let's do it with Kuvan, please.

Well, I'm broadly aware of Kuvan—it's an issue that I've seen in some of the correspondence that I've had—but I'm not so aware that I could give a pledge to determine an outcome. If, however, the manufacturers want to submit for appraisal through our own appraisal process—the All Wales Medicines Strategy Group—they are free to do so. I think the challenge about Jeremy Hunt calling on Matt Hancock to do something shows you something about the danger of having former Ministers on backbenches. But it wasn't magic that got Orkambi over the line, it was a hard, commercial conversation, because the manufacturers of that drug weren't prepared to move until a very long, damaging and unpleasant campaign—which I think damaged a number of families in the process—to actually change the offer they were prepared to make to the national health service.

And this isn't just an issue for one particular form of medication. It's pretty common, not just for new treatments for, if you like, more common conditions, but certainly on rarer conditions as well. And, in fact, in the new treatment fund, which we're celebrating three years of making a real difference, many of the treatments that are brought online are for rare conditions—rare conditions that are now supported because there's a NICE appraisal. And, often, it's that initial cost to health boards, where there's a challenge that the new treatment fund helps with to get it available more broadly within the service. And we'll face this challenge in the future with advanced therapies too. So, I'm more than happy if the Member wants to write to me, and I'll be honest about where we are in the appraisal process and the things that we can do and are prepared to do here in Wales. And I'm more than happy to maintain that level of honesty with her, both within and outside the Chamber.

The Plaid Cymru spokesperson, Leanne Wood.

Is it still the Welsh Government's policy that Wales should have fewer accident and emergency departments, so that staff can be concentrated on fewer sites—yes or no?

It is the policy of the Welsh Government that care should be provided as close to home as possible. And there is a recognition that, for some services, that will mean fewer specialist centres. But, in terms of any particular point about how many emergency departments there could or should be, the Welsh Government doesn't have a magic figure in its mind about the number of departments there could or should be. These are difficult questions, which are reliant both on the need of the population, but also on our ability to recruit the right numbers of staff to provide the right service that people rightly expect.

Do you agree with what the First Minister said yesterday, that it should be the decision made by doctors about the future of the A&E department at the Royal Glamorgan Hospital?

Well, the decision made about the future of the Royal Glamorgan Hospital, which we'll be debating later on today, is one where the health board have a responsibility to make a choice. They do need to listen to and engage with their medical workforce to understand what doctors are saying about the safety of that service. That's a short-term challenge and a longer term one. But they also of course have a responsibility to listen to the public. And that's not just about the numbers of people who are engaged and genuinely anxious about the future of services. They've got to be able to listen to those concerns, those fears—because, actually, the health board themselves may not know everything about the direct impact upon the communities they serve, the challenges about access, about equity—and to be able to listen to what the public are saying and to respond to that in providing any answer for the future. And of course I expect not just members of the public, but their elected representatives too, to ask those questions. And I expect those questions to be answered, in a way that is genuinely open and transparent, about any choice the health board make in providing the sort of high-quality and safe service that people in every part of Wales are entitled to expect.

I agree with you that the public should be listened to. It's a real shame that the 60,000 responses to the consultation that went into the south Wales programme, back in 2014, weren't listened to. 

Minister, I can reveal, this afternoon, that, in the last couple of hours, the overwhelming majority of consultants at the Royal Glamorgan have agreed, in a meeting, that a full 24-hour A&E should remain at the Royal Glamorgan Hospital. Now, both yourself and the First Minister have said that this decision needs to be led by doctors. In the light of the views of those doctors, will you now commit to restoring A&E at the Royal Glamorgan and guaranteeing its long-term future?   

Well, actually, the health board themselves have made it clear in the statement they made yesterday that they don't have a final answer to what should happen. They do, though, have an unavoidable challenge about the future safety of that service, and that is because the last permanent consultant at the Royal Glamorgan is leaving at the end of March. Now, you can't ignore the reality of what that means for the future safety of the service. And for all those people who, understandably—within this Chamber and outside it—want to have a 24-hour service remain in the emergency department at the Royal Glamorgan and consultant-led, that has to rub up against the reality of whether or not they can recruit staff to deliver that service safely and effectively—

You need to change the south Wales programme if you're to have a chance of recruiting.

And the problem—the problem that all of us face is that, if we can't recruit the right number of permanent consultants to deliver that service, then we won't be able to do that. And it's not simply a matter of saying the south Wales programme is to blame. That doesn't resolve the problem. It would just avoid the problem we face, and, actually, we all know that if you ignore safety concerns that are provided by staff, by people delivering that care—if you fail to deal with that challenge—then, actually, you will end up providing an unsafe service, harm being caused, and then people concerned will quite rightly say, 'Why didn't you do something about it? Why didn't the health board do something about it?'

And this isn't a question of the amount of effort that goes into recruitment. Emergency medicine is a shortage area of practice. Right across the United Kingdom there are challenges. This is not a situation that is unique to one part of Wales. And I understand why people have strong feelings, and I don't ask people to park their feelings or to avoid the challenges that exist. But I do want us to have a debate that is honest about the real challenges that we face and not to try to pretend to ourselves or anybody else that there is an easy answer—that, if only people tried harder, all of the challenges wouldn't exist. 

Brexit Party spokesperson, Caroline Jones. 

Diolch, Llywydd. Minister, just a few days ago, we marked Time to Talk Day here in Wales, aimed at getting us, as a nation, talking about our mental health, but more importantly helping to change attitudes and remove the stigma that still surrounds mental health, and, while we have made some progress, it's sadly not enough.

The annual population survey ranks Wales behind all other UK nations for measures of mental well-being. One in four of us will experience mental ill health, yet a staggering 90 per cent of people have been treated negatively because they have mental health issues. Minister, what more can the Welsh Government do to encourage more positive attitudes towards mental health issues to get more of us talking about our own mental health issues in order to break down barriers? 

Well, as you know, we continue to part-fund the Time to Change Wales campaign. That has actually made a difference in persuading people to talk more openly and to be more understanding about mental health challenges, because almost all of us, if we haven't had a mental health challenge ourselves, know someone who has. This isn't an uncommon challenge and issue. So, it's not just about funding the campaign; it is about the way that we make choices and the way that we behave.

And, in fact, in the last Assembly term, Members from all of the parties in the Chamber, at that time, spoke about their own challenges. And I think that was a really important moment for this place, to have elected representatives openly talk about the challenge they face, but the fact that, despite that, they still go on and achieve. And there's a challenge here about recognising that having a mental health condition does not mean that the rest of your life needs to stop. We don't say that when people have physical health challenges either, and it's about a much more open and understanding conversation. But this is cultural change. The Government is part of leading that, but all of the answers certainly don't rest in our hands. 

Thank you for that answer, Minister. When it comes to changing attitudes to mental health issues, we have to lead by example, and we have certainly set an example here in the Assembly, with Members talking freely and openly about their own health issues. Unfortunately, the positive example we have set does not pervade the public sector as a whole. I recently had to represent an elderly constituent who was facing eviction by his housing association due to the cleanliness issue of his home. My staff had to point out that this gentleman had severe mental health issues, along with other physical health issues, and was receiving zero support. Thankfully, in this case, the tenant was not evicted and is now receiving the help that he needed. However, had we not been involved, I have no doubt that this elderly gentleman would have ended up on the street, homeless. We know that mental health issues are prevalent in our homeless population. Minister, what guidance can the Welsh Government issue to local government and registered social landlords to increase awareness of mental health issues and ensure people with mental health issues receive the support they need, and staff the training that they also need? Thank you.

This isn't just a single-shot measure, because actually we do know that, across both local authorities and housing association partners, there is a growing level of awareness about the stress and mental health challenge that people face for a variety of reasons. It's not just about the challenges that many people face, for example, about changes in the benefit system; real anxiety. Money worries often lead to mental health challenges. It's not just about the homeless population; people who actually live in homes and have jobs also face some of the same challenges.

So, there's no perfect way of looking at it, but I think you'll find that housing associations in particular have a pretty well-structured national campaign where they're looking to raise awareness both within their own memberships and the wider landlord sector about the challenges people do face. It's a national conversation, it takes place here in the Assembly, in public services, but also in workplaces too. Because I think we need to accept that, for all that we want to achieve, we actually do need to get alongside the public to make the sort of difference that the Member refers to.