Cynulliad Cenedlaethol Cymru

Croeso, bawb. Bore da. Good morning. Welcome to the Health and Social Care Committee this morning. I'd like to welcome Members this morning and members of the public. A few issues as we move to item 1. This meeting is remote this morning, so all Members and witnesses will be attending remotely. Standing Orders remain in place, as they normally do. And we do have simultaneous translation between Welsh and English as well. Joyce Watson will be the stand-in this morning should something happen to the broadband in Newtown. There are no apologies this morning, and, if there are any declarations of interest, please say now. Lovely.

In that case, I move to item 2 today. This is the fourth meeting that we are taking oral evidence from in regard to our inquiry on hospital discharge and its impact on patient flows through hospitals. So, we're very pleased this morning to welcome the two witnesses that we have before us. There's Huw Owen, who is a policy director at Alzheimer's Society Cymru and Angela Davies, who is an unpaid carer. So, we're really grateful to you for being with us and for your time this morning.

Perhaps I can start with you, Huw. What are the common issues when it comes to hospital discharge for those who are suffering from Alzheimer's? What are the common themes?

Thank you very much. Just to correct the record slightly, you've given me a bit of a promotion there. My title is actually 'policy officer', but, if our country director is listening, I will happily take that on should she want me to have the role.

In terms of the main issues we see for people living with and affected by dementia when leaving hospital, when being discharged, the big issue is getting assessments done to make sure that they are discharged to suitable situations for their condition at the moment. So, the key example would be ensuring that people living with dementia are sent to either their own homes, should that be their wish, and their home is adapted to be suitable for them, or to a care home that has staff suitably trained to manage their care needs, or to another service or situation, depending on what that need is. Often, assessments are so slow in actually getting to the person and assessing their needs that, by the time a care package or a transitional phase is put in place, the person living with dementia has either further deteriorated or they have additional needs that then require a further assessment.

One of the other key issues we see is the actual timing of discharge for people living with dementia. So, at the moment, there is no set time for people living with dementia to be discharged from hospital; it's whenever ward staff feel that they're ready, whenever pharmacy has pulled together medication. We heard, when we pulled together the cross-party group on dementia's report into hospital care for people living with dementia, that, oftentimes, this meant that people were being discharged late at night when they had no viable option to get home, there was no public transport running, taxis were prohibitively costly, and it meant that people were, essentially, being—for want of a better phrase—kicked out of the hospital and left to fend for themselves in the small hours of the morning, which is something that I think we'd all agree here is absolutely abhorrent.

I would also say that a third issue for people living with dementia is a lack of involvement of carers and family members in discharge planning. Often, assessments are filled out by ward staff or social care staff without the involvement of the people who know the patient best, which means that needs aren't often taken into account. Because, as good a job as the ward staff and social care staff do, they can only assess what's in front of them, and, without that extra evidence, without that extra input, without that extra knowledge of the person, they'll often miss things or get things completely wrong.

Thank you. Thank you, Huw, for outlining those common issues. I knew there was a good reason why I normally let the witnesses introduce themselves, but thank you for correcting the record there.

Angela, thanks ever so much for being with us today—really grateful. I wonder if you could just outline to us your experience in terms of your family situation, but I think what the Members are particularly keen to hear about is what you think could have been done differently in your experience. I wonder if you could perhaps outline that to us, Angela.

Okay. I've had two experiences of this, of discharge. The first was wholly unsatisfactory and, in my view, dangerous. My father, who has dementia, had an infection and was sent, and then, once we were on top of the infection, was sent to another hospital—I'm going to name it as Chirk—for physio, because it had infected his legs. He'd got quite weak. He was actually there for 48 hours. At no point did we speak to a doctor. In fact, for the whole nine months this has been going on, we have never spoken to a doctor. We had a phone call at 4 o'clock in the afternoon to say that my father was ready to be picked up and he was fine. 'Nothing wrong with him. Great. Can go upstairs'. I was working, we scrambled together, we went to pick him up at 6 o'clock, he was struggling to walk. I was told he was dry. He wasn't, he was incontinent. He was soaking by the time we got him home. He couldn't go upstairs, he had to sleep on the sofa that night. At no point did anybody from the hospital check the home. They said he didn't need a care package. We had nothing. I ended up having to scramble around the following day to buy a bed, so it could be delivered the same day, so he could sleep downstairs. We couldn't get beds—. It's a small cottage, you can't get them down the stairs. So, that was horrendous. We ended up having a crisis team in to help support, and nobody could believe that he was discharged from that hospital without a care package.

It appears to me that he basically went up and down the two or three steps that they have in physio that I've used myself, and, 'Yes, he can go up and down stairs.' Well, he couldn't. He ended up then having to go to a care home to wait for a care package, which didn't work out. They actually asked him to leave the care home because he wasn't settled in that environment, and he went to hospital again, where he had been for seven months, waiting for a care package. The hospital don't want him there, because he's not in clinical, medical need; he's a care situation.

My father actually has come home now; he came home two weeks ago. That was a smoother situation, because we're, as a family, a bit more aware of what's going on now. However, again, I have never spoken to a doctor caring for my father. When we were allowed to visit, doctors would always say, 'Oh, it's not my patient, it's not my patient.' But then, the next day, they'll be on your back asking you to remove him, which we couldn't do without a care package.

They wanted to discharge him early evening—late afternoon, early evening. That was their original plan, which we as a family wouldn't accept. We said, 'You can't do that to someone with dementia. He needs time to settle in.' In the end, we did get him home around lunchtime, which was lovely, because he could start to settle. He settled very quickly, actually, but I can see, for other people with dementia, that that may not have been the case.

The way it could improve for me is that there has to be more communication between the medical staff and the family. The pandemic hasn't helped, but we're always speaking to nurses, not the doctors. The physios, the occupational therapists, I've had great telephone conversations with them, but they just don't seem to link between the different disciplines and nobody really seems to understand how dementia affects the individual. There is a saying, isn't there, if you meet a person with dementia, you've met a person with dementia, because everybody is so different, but there seems to be a total lack of understanding of their needs and how best to support that person and make the situation less frightening and confused for them.

They don't appear to understand that, although you ask permission from that person to do things, quite frankly, only asking that person is quite pointless, because my dad has a five-minute memory. He can remember things from five years ago very, very well, but, if you ask him what he's eaten for lunch, he doesn't know, but he knows he enjoyed it. So, what's the point in asking that person and going off their approval to do things without also including a family member?

I was my dad's relevant person representative, which I believe is a representative for the patient. Apart from getting reports that people had filled in, at no point has anybody actually asked me for anything. If they do ask anything, they ask my mum, who's 86 and very confused herself and distressed at the situation, and she specifically asked them not to call her, because it just frightens her and she panics. She wanted them to call me, but nobody calls me. So, that's my experience.

Thank you, Angela. Thanks ever so much for sharing it, and it's powerful to have that experience and a story like yours delivered to us, and it just seems it's a catalogue of obvious errors. As you were talking, I was thinking, 'Oh well, we will—', that I'd ask you what can change, but, when you delivered your experience, you don't need to say what needs to change; I think it was pretty obvious as you were telling your story. I think Members will want to come back, perhaps, and ask you, Angela, and pick up some of the issues that you've said when they're asking their questions, if that's all right.

That's fine.

Thank you, Angela. Right, we'll move on now, I think, to the next Member to ask a set of questions and we'll come back to some other issues as well. Gareth Davies. 

Thank you very much, Chair, and good morning to Huw and Angela, and it was quite harrowing to hear your personal story there, Angela. I can sympathise with some of the problems you raised with your own family, as, in my experience working in the NHS, I dealt with a lot of dementia patients on the front line. I was working in physio, so I've got a good understanding of some of the wider issues that surround your personal case. So, I'll throw a first question out, and I know Huw answered quite a bit of it in his answer to the Chair at the beginning. What do you think the main reasons are that people with dementia tend to stay in hospital for longer and have poorer outcomes than other patients, because it shows that people with dementia have nearly four times as long stays in hospital as the result of a fall and are less likely to go home after that? So, what are those main reasons? Is it access to services, is it allied health professionals, is it something in the patient flow system? What's the main reason behind that?

Thank you, Gareth. I think there are numerous reasons, to be brutally honest with you. To give you some statistical information to back this up, when we did the cross-party group on dementia's report into hospital care in the last Senedd, we asked the respondents to our survey, of which we had over 2,000, running right through medical services—so, all the way from people like Angela who are carers and their loved ones as patients, all the way through to porters, cafe staff, physios, doctors and nurses; we had a real wide range of responses—and over half of the people we spoke to there said that the top area for improvement in care for people with dementia is actually knowledge of medical staff on dementia, and I think that's a really, really telling point.

People living with dementia are rightly, I believe, when they go into hospital, treated for the issue they go into hospital for; they're treated because they've had a fall or they're treated because they've had a stroke or because they've got an infection. But, you can't treat the issue without treating the person, and people living with dementia have dementia. It's a really stupid thing to say, probably, but what I'm driving at here is, in the same way you would look at somebody with a cancer diagnosis who's had a fall and go, 'Right, they're living with cancer, maybe they need a restricted diet. Maybe they need some extra help. Maybe they've got mobility issues because of their existing conditions.' People living with dementia aren't looked at like that; they're looked at as, 'Patient A is here because they've had a fall and they've broken a bone, so we'll treat the broken bone.' How do you treat a broken bone? If it's a broken leg, you stick it up in traction. But, actually, that person's got dementia, and that person has always been active all their life and likes to get up and go for a wander or go for an explore around the hospital, or needs to be active to stay stimulated, and that doesn't happen because they're treated for the condition they've gone into hospital for, not as the person with the condition.

What that means then is that people with dementia often tend to be stuck in bed. During the evidence gathering for the cross-party group report, we heard so many stories of carers and families telling us that their loved ones had been kept in bed, not forcibly—we heard one or two stories of restraints, which is something that probably shouldn't happen anymore. But, people with dementia, instead of being encouraged to get up and walk around and explore their surroundings, to settle in, to help them understand where they are, were told, 'No, you've got this problem. You need to be in bed. You're going to stay in bed.' People living with dementia often have perception issues as well. So, we see food and drink put at the end of the bed—[Interruption.]—out of sight and out of reach. Sorry, Gareth, are you—?

Apologies. I think my internet was a little bit unstable there. I got the gist of your response, though, and thanks for that. What do you think could be placed to prevent or minimise the deterioration of individuals with dementia during their hospital stay? I know, in my experience, we had dementia support workers in the hospital, and during the pandemic they weren't able to do as many duties as they had before. Pre pandemic, there was a lot of talk about the fact that there weren't as many dementia support workers, because they were the ones who could spend more time with the patients than your nurses and doctors and AHPs and stuff. They had the opportunity to do more practical things with them, whether it was memory units in hospitals or dementia-friendly activities that they'd do with them. Do you think investment in that sector could be beneficial in helping with some of these issues, or do you think it could be something more around the training of nurses, or advanced awareness, or indeed a combination of both?

Combination of both is the short answer there. Slightly longer answer to put some flesh on that: absolutely, dementia friends and our Dementia Friends programme here at the Alzheimer's Society is incredible. We've got over 300,000 in Wales at the moment. We're doing incredibly well on that. Obviously, we'd like more, so if any of you aren't, please let me know—I've put the little pitch in there. And more in-depth training for staff who come into contact with people living with dementia on a daily basis is a given for me. But, there's something that you hinted at, I think, in your question, that I think is a really, really obvious solution, and that's involving people like Angela more—involving carers of people living with dementia in their care.

One of the big things we were told by hospital staff, particularly ward staff, when we did the evidence gathering for the cross-party group report, was that, too often, they feel under pressure to complete tasks by a certain time. By that, I mean: breakfast needs to be delivered, eaten and cleaned up by 9.00 a.m.; they need to do water at 11.00 a.m.; they need to do meds at midday; and they need to do lunch at 1.00 p.m. And, actually, that doesn't work for everyone. That doesn't work for me, let alone somebody living with dementia. The person could enjoy lying in or not waking up until 9 o'clock, and then not eating until lunch time. That's a personal preference. It's something that needs to be taken on a lot more, and something we'd like to see hospitals do is move away from time-oriented tasks to person-centred care. It is happening, it is a slow process, but it needs to be sped up.

Part of the issue, I think, on that is staffing. We are incredibly understaffed. The Royal College of Nursing, obviously, publish their nursing vacancies, and I think the last figure was around 1,500 vacancies, something like that. It's a shockingly high number. And staffing helps with that, but there are solutions that we could implement, I believe, that would make a real difference. As I've said, involving people like Angela—the family carers—in delivering the care if they're available to do so. So, de-restricting visiting hours for the carers—they can come and go as they please to help out with their loved one. For example, if somebody's got motor-skill problems and struggles to eat, bring the carer in at lunch time, if they're available, to do that to help feed somebody or to help somebody drink or to help somebody take their medication.

And one of the other things that we've picked up doing the cross-party group work was we spoke to care homes, and care homes told us that when their residents are admitted to hospital—and around 70 per cent of people living in care homes are living with dementia, either diagnosed or undiagnosed, just for the record—what we see is that care staff have told us that they would absolutely love to follow their resident into the hospital to make sure that they're fed, that they're watered, that the nursing staff, the ward staff know everything about their resident, and to even help deliver some of the basic care things. I've spoken about eating and drinking already. But we were told that care staff aren't insured to do that on the hospital estate. So, if they follow their resident into hospital, feed the resident and the resident chokes, or there's an issue, then the care staff member is liable and the care home is potentially liable for any issues that cause that. I think that's a really basic thing that we could be doing to solve a lot of the problems experienced by people living with dementia.

Thanks, Huw. I don't mean to sound too tongue in cheek with my next question, but do you think the inappropriate use of antipsychotic medication to manage what could be deemed as challenging behaviour from dementia patients is an issue in hospitals? And if so, how should that be addressed? Because we wouldn't want to see the inappropriate use of medication just because it might be deemed that somebody's challenging and taking too much time up on staff resources, where, essentially, the resources should be ploughed into increasing that staffing rather than spending money on quite expensive drugs and medication.

I think you've absolutely hit the nail on the head there. One of the issues we see a lot, and I think this is purely down to time and the availability of staff, is that people living with dementia in hospitals are often seen as an inconvenience. I don't think there is a specific—. Most hospitals, if you go in for a broken leg, you're going to end up on a general ward. If you go in for a cancer treatment, you're going to end up in a chemotherapy setting or a cancer-specific ward, or if you go in for an infection, you're going to probably end up on a general ward again. But what we see there is that these staff are trained in their speciality, and they do maybe a module or half a module in their training on dementia. Some of these staff will have been in service for an incredibly long time, and something that we want to see is that staff retention in health and care, because the more knowledge they've got, the better equipped they're going to be to look after people, but if they haven't had a huge amount of experience of somebody living with dementia, then they're not going to know what to do beyond what they were told in their training three, four, five, six or 10 years ago. And what we see then is—and I saw Angela nodding her head when I said this—that people living with dementia are seen as an inconvenience.

You can't complete everything else you need to complete in that day because the person with dementia in the bed at the end is kicking up a fuss, or is being, in staff's eyes, 'aggressive'. And actually all that means is the person is probably thirsty, or they're hungry, or they need to go to the loo, or they want to get up and go for a walk, and it takes five minutes to have that conversation with the person, to find out what they want, find out what they need, or even, when they're admitted, have a five-minute, 10-minute conversation with the carer, with the family member, with the care home staff—'What happens when this patient starts displaying these symptoms or these signs? What does that mean? What do they need?' Speak to the people who know them best. And instead, we see people being given medication to keep them quiet, or to keep them in bed, or to keep them docile, and it shouldn't be happening, because actually those difficult behaviours are a sign that the person needs or wants something, and it's often a very, very easy fix. It's a glass of water or a sandwich or a trip to the toilet.

I'm really sorry, we're a bit stretched for time. Do you have any last questions at all, Gareth? And I'll ask Angela if she wants to come in.

I'm aware of the time, Chair, and thanks for reminding me. We often focus on the negative stories, but I was just wondering quickly if you can give any positive cases that you've seen over time that we can end on in this section—specific schemes or services around hospital care or discharge.

There's nothing, unfortunately, specific that we're aware of at the moment. There is good practice out there, I will say that. There is some incredibly good practice going on, but it happens in silos, and as you've said, Gareth, we focus a lot on the negative, and my call to anyone listening who works in dementia care in hospital or social care is, if you know of good practice going on out there, go and tell other people about it, because too often we hear about the negatives and not about the positives. If we could hear more about the positives, and the positive work that's going on, we can start to roll that best practice out across Wales and make it work for people living with dementia in other health boards, in other care settings, and it's something that we need a lot more of in Wales, I think—celebrating the positive where it exists.

Angela, I don't want to put you on the spot, so don’t feel you have to contribute to this section at all. There might be some specific questions later for you, but if you wanted to say anything at this point at all, do feel free to come in now.

Yes, I would, actually. My experience with my dad is that he doesn't know he has dementia. He didn't know why he was in hospital, but recognised it was a hospital, so that appeased him. But he doesn't realise that he is at the point where he needs personal care. So, when the nurses and the staff went in to change him and try and get him up, they would go in, two at a time, 'Right, Ron, we're going to do this to you, we're going to do—.' And he's like, 'Whoa, go away, go away. Why are you here? I can get up. I can drive. I can walk.' So, they just don’t understand, and then they call him aggressive, when in fact, how would you like someone marching into your room, or to where you're sitting now, and two people suddenly put their hands on you, telling you you're going to get changed, or you're going to have a wash, you're going to have a bath? You'd be like, 'Why?' So, the lack of understanding that, with someone with dementia, in my experience with personal care, you have to come in from the side, and instead of just saying, 'Lift up your arm', well, 'Why are you lifting up my arm?' My dad says, 'I'm not doing that, I'm not doing that', but when you explain, he starts to understand a little bit as to why. He's a proud man who, in his eyes, doesn't need any care, so it's little things like that that staff are just not aware of, and it's not their fault. They have a time limit to get everybody washed, dressed, sat in a chair in the mornings, and they can't come back. If you don't get up at that time, and sit in the chair, you're in bed for 24 hours. They don't come back and revisit it.

Thanks, Angela. Jack may pick up on some of those points, Angela, in his next set of questions now, so thank you, Angela.

Thank you, Chair, and good morning, both. Angela, I think it's great to have you here. I'm sorry for your experience, but it's great to hear directly from you. I think it's been a very powerful testament so far. I wanted to pick up on some levels of communication between staff and families and carers, in particular. We hear this story quite often in all parts of healthcare, whether it's poor communication between staff, families, carers. For example, in the evidence that's been submitted today by the Alzheimer's Society, even when the person has the lasting power of attorney, there is still a level of poor communication. Angela, I think you said before that you still haven't had a phone call or conversation with a doctor.

No, I haven't, no. 

Can I just ask, then—perhaps this is to Huw—what can be done to change this? We know the problems. We can see there's an issue here with comms. How do we change that? Is there a standard operating procedure that needs to be followed? Is there one that's not being followed? How do we get around this? 

It's a really tough question, that, and it's a difficult thing to answer because I don't think there is a standard operating procedure out there. We need to make people aware that dementia is everyone's problem, it's everyone's issue and it's everyone's concern when you're in hospital. We spoke to—. I'm going to reference the cross-party group report again here, because it's a really valuable source of evidence, having spoken to over 2,000 people. One of the carers we spoke to when we were gathering evidence for that said that her loved one had gone into hospital for routine surgery, and they'd gone to speak to their loved one before going into surgery just to check that they were okay, check they understood what was happening. And the loved one said, 'I haven't seen a surgeon', and it turns out that what had happened was that the surgeon had popped in for five minutes, gone, 'I'm going to do X, Y, Z to you', and then disappeared, without realising that the person had dementia, which meant that the person going into surgery didn't understand what was happening. This carer elaborated and went on to say that they'd spoken to the surgeon afterwards as part of the post-surgery debrief, and had raised the point with the surgeon, 'Did you not know that my loved one has dementia?', and the surgeon's response was, 'It's not my problem—I deal with them when they're out cold.'

I'm just going to leave that hang for a second there, but what we see there is somebody not recognising that they have a really big impact on the life of somebody living with dementia, and treating them, as I said earlier, as an inconvenience, as another number, is, quite frankly, almost a bit of a waste of time with that quote. And, actually, taking the time to explain to somebody with dementia what you're doing to them and why, as Angela said earlier, is absolutely vital, and it's about changing those attitudes. Now, you'll get people whose attitudes won't change and you'll get people whose attitudes will, because you'll talk to them about this and you'll say things like this to them, and they will get it. But it's about, for me, trying to open up that education and really driving home, using lived experience, using experience of people like Angela, of people living with dementia to deliver and deliver refreshes on the importance of communication to people living with dementia, and clear and effective communication. 

I think that's probably the big thing—ensuring that dementia isn't just done, as I said, as a module or half a module when you're doing your basic medical training. It's something that follows you all the way through your medical practice as far as you go, because there are going to be 100,000 people living with dementia in Wales by 2050. We're going to need to provide hospital care for those 100,000 people, and if we don't have a workforce that understands how to communicate with them, how to talk to them, how to engage with them and how to get the best out of that person when they're in hospital, we're going to be in an even worse hole than we are now. 

Okay. Thank you for that. I think that's a good piece of evidence that we've heard here. Can I move on to the pressures, particularly on unpaid carers? We see, for example, hospitals trying to free-up beds, and you can understand why they need to do that, but you can also see that it's piling pressure on carers, unpaid carers, families who are having to suffer the consequences, which is a difficult thing to do. Can I, firstly, just ask what do you think the scale of that problem is? Can you try and quantify what the scale of that problem is for the committee? And then, I am conscious of time, Chair, but maybe I can look to Angela, if I may, for the second part of the question, which is: what do you think can be done, particularly from a carer's perspective? And I ask this quite often in committee: there are lots of things that can be done in the long term, but what can be done immediately? What's the recommendation immediately to help? I appreciate that's quite a difficult question. Perhaps you may be able to give us some of your thoughts there. But, Huw first, if that's okay. 

Thank you, Jack. Quantifying it is incredibly difficult. We saw, just before Christmas, statements from Cardiff and Vale health board, the Welsh ambulance services trust, Cardiff and Vale councils, as well as Betsi Cadwaladr health board, the Welsh ambulance trust, and all of Betsi's associated councils, asking people who were able to, and in some cases, unable to take their loved ones home from hospital, because of the intense pressures. In terms of quantifying it, it's not a statistic we've got available at the moment. I will say this very quickly: data on dementia in Wales is incredibly bad. It's something we need to improve dramatically. To give you an example, our diagnosis rate is 50 per cent. So, we know there are around 50,000 people living with dementia, but, actually, we only know 25,000-odd of them who have got a confirmed diagnosis. That needs to improve because until we can improve that data collection, we can't adequately give you answers to that sort of question, I'm afraid. But the scale of it, as those two statements showed, is incredibly dramatic. We've heard of local authorities handing care packages—sorry, care contractors handing care packages back to local authorities because they simply don't have the staff to deliver them, which again increases time in hospital for somebody living with dementia. 

Thank you, Huw. And, Angela, perhaps on that second part of the question, what can we do immediately? Is there a recommendation the committee can make to Government, to health boards, to try and relieve some of that pressure on carers and families?

My only experience is my father spent seven months in hospital purely waiting for a care package. The situation is we're unable to provide full-time care ourselves. I myself am living with cancer, so I have treatment and isolate every three weeks. My mum is 86, and has a serious back issue. So, we can support outside carers, but we cannot provide the full care ourselves for those reasons.

We found it absolutely impossible to get a care package. The private companies can cherry-pick the clients they want to take on. Whenever somebody assessed my dad, they saw the words 'aggressive', 'challenging', 'difficult', 'argumentative' in his notes, and it was quite coldly written. Those were the behaviours that were witnessed, but there was no understanding as to why. And I personally spoke to many care companies trying to get support for my father, and they don't want to do the challenging work. So, until we sort out the social care provision, who provides it, I can't see it ever being resolved, because somebody with dementia will always fall through the cracks, and will always be the last person these private companies want to take on. And we'll just end up with wards—. All I can see is wards and wards of dementia patients being in hospital, and I think that's the only way it's heading until we sort out social care provision. 

Thank you for that. Again, another powerful piece of evidence. I'll leave it there, Chair. I know other Members have got questions. 

Thank you, Jack. Joyce Watson. 

Good morning, both. Thank you, both, for coming in, but particularly Angela, because it can't be easy. You've answered a lot of the questions I was going to ask, but one of the questions that hasn't been asked is that we've had evidence that delays and discharge often result in an individual's usual package of care expiring, and the whole care process then having to start again from the beginning—just whether there's something that can be done to help those people who find that the case. And I suppose it's a circular argument. The longer people stay in hospital, then that usual package of care clearly will disappear, and it will go to somebody else. So, how can we help those people who thought they had a system in place, did actually have a system in place, but, somehow, find that it's been removed and they're back in the cycle again? 

Again, Joyce, I think you've hit the nail on the head with the phrase 'circular argument' there, but I would bring it back to communication. Too often, we see that, as you said, care packages expire, assessments expire, because people don't talk to each other. Healthcare doesn't know enough about what social care does; social care doesn't know enough about what healthcare does. We often see as well, where residents living in care homes go into hospital for care and they have a package of care that includes, say, physio once a week or twice a week, and something like chiropody as well, that often ends when they go into hospital, and it's up to the hospital to put that care package in place. What I can't understand is why that care package can't follow the resident going into hospital. What I don't understand is why whoever is delivering that package says to the person delivering the service, 'This patient has gone into hospital. Instead of going to the care home to see them this week, you'll need to go to the hospital and see them.' It's a really simple fix—it's an e-mail, it's a phone call, it's a conversation—and it's just not happening. 

One of the big things that I think would do really, really well to fix this is increasing the knowledge of the care sector within healthcare and increasing the knowledge of the healthcare sector within social care. To give you an example of that, there's a fantastic programme being undertaken by the University of South Wales at the moment that places nursing students in care homes, so they get a really good idea of what is happening in care homes, how care homes work, how they interact with residents, how they interact with families, with carers, and the difficulties, then, residents and people with dementia have when they go into hospital. We've spoken to student nurses who've undertaken that placement, and they've said it's changed their outlook on how they're going to deliver all of their care going forward. I think it's a fantastic programme, and it's something I'd love to see rolled out across Wales, and that a mandatory part of medical training is you have to spend a placement in a care home to get an idea of how the two sectors interact and how they work together.

Thank you. There's an example of best practice that we can use, which is always useful for us, and we can make a recommendation from. All the other questions I was going to ask have been already asked. Thank you. 

Thank you, Joyce. Mike Hedges.  

Thank you, Cadeirydd. We've talked a lot about social care, which I was going to raise. I would ask one question: you talk about secondary care or hospitals working with social care, how do you find the work between primary care and secondary care? I often find that is often worse than the relationship between the hospitals or secondary care and social care. 

Yes, I think, you're right, Mike. There are issues in communication right across the board. There's no specific example I can give you that would illustrate the issues that are there, but they are there. As Angela said earlier, you still haven't talked to a doctor. I don't know what your relationship with your GP is like with your dad, if it's something you've got any experience of to—

The GP hasn't seen my father for 10 years. 

I'll give a bit of evidence here as well. I've dealt with constituents who've come out after dementia and been told that they need to make an appointment to see the GP. They end up in that logjam called 'receptionists', which I am sure everybody on this call recognises, and have great difficulty in getting through, and that is one of the problems. The three-state parts are not joined together. But there are two questions I'd like to ask. One is: do you think the Welsh Government is aware of the urgency of the social care needs, and do you think it's attempting to deal with it?

I would answer 'yes' to both. I think both could be done quicker, could be done better. We're really pleased to see the co-operation agreement between the Welsh Government and Plaid Cymru, and we were incredibly pleased at the last Senedd election to see that every single party elected to the Senedd had social care reform in their manifestos. I think I'm right in saying this: this is the first time, certainly in my memory, in Welsh politics that all four parties have consensus on an issue as big as this that something needs to change and something needs to change dramatically quickly.

The co-operation agreement is a good start to that for the Welsh Government. What I would also say is that we're looking forward incredibly to the work of the expert group announced by the Welsh Government, which is due to report in April. I would put a criticism of that on the table in that, as far as we can see at the moment, there's no lived experience in the membership. So, there's no carer, there's no person living with dementia. But we're incredibly hopeful that, as that group does its work, it's going to report, and involve people with lived experience in that.

In terms of the urgency, again, I think it could be stepped up a bit more. We've seen the issues as we come out of the pandemic. The committee will have heard, I'm sure, and read countless pages of evidence detailing just how bad it is for everyone across Wales—the vacancies in social care, the vacancies in healthcare, and the issues that that has led to for the people.

Creating a joined-up system, free at the point of need, which is something Alzheimer's Society Cymru has called for, is incredibly vital, and we would like to see legislation come forward on that before the end of this Senedd term so that, hopefully, there is something in place as we move into the next Senedd term, from 2026 onwards. Ideally, we'd like it to move a bit quicker, but these things take time, and drafting legislation and getting everything through the machinations of government is difficult, but the core would be: keep working on it, keep working hard on it, keep putting it at the front of your agenda. Because unpaid carers in Wales account for about 96 per cent of care and contribute billions to our economy in terms of care. They are on the verge of breaking point. We can't let them fail, because, if they fail, our social care system fails and our healthcare system will fail. The quicker we can put support in place to allow our unpaid carers and people living with and affected by dementia to access good quality care that doesn't break the bank—the sooner the better.

So, please keep working on it, please keep it at the top of your agenda, and please keep having those conversations and please, please keep involving people like Angela and people living with dementia. Because you won't build a system that works for these people, that works for carers, that works for staff and for people living with and affected by dementia without the input of the people who use the system.

Thank you. I think what I've found, and you can tell me if I'm wrong, is that an awful lot of care is a mixed economy: it is family carers, or neighbour carers and paid carers, so that mix. And what we need to do is ensure that we don't put all the pressure on the unpaid carers, because that's when the system will break. 

But the question I've got for you is: do you come across any funding tension in health and social care over who's going to pay? I think that's what we've come across in other areas in that, yes, they need to move into, let's say, a care home—'Ah, but it's the social services responsibility for that care home, not a health problem.' And I would argue that, anybody suffering from dementia, their primary cause of needing to go into a care home is health.

Yes, nail on the head again, Mike. It's a phrase I've used three or four times today, but it's because I think members of this committee understand the issues very, very well. Access to continuing healthcare funding for people living with dementia is, quite frankly, appalling—i.e. we submitted evidence to this effect to, I think it was, the predecessor committee to this one in the previous Senedd— and, as part of that, I spoke to a carer who had battled for I think it was three or four years to get continuing healthcare funding for her loved one. That funding came through two weeks after the loved one had passed away. Four years—three or four years—this carer had battled for this funding. You've hit the nail on the head again, Mike: dementia is a health condition. It's a disease of the brain. We don't understand enough about the causes yet to explain fully the exact causes of dementia. We are incredibly behind in our dementia research; it's something we need to increase. But what we do know is that dementia is a disease of the brain.

Thank you very much.

Thank you. Thank you. Rhun ap Iorwerth.

Yes. Thank you, Rhun. I think the barriers are multifaceted, to be honest. One of the big barriers we see is pharmacy, and communications between wards and pharmacy. People leaving hospital will often need medication with them as they go. What we see is that ward staff are not planning for discharge appropriately far enough in advance to put other hospital departments, like pharmacy, like transport, on alert that this person is going to be discharged, and, therefore, when they come to be discharged, when they're ready to go, oftentimes things aren't in place. So, medication isn't ready, transport isn't arranged, care packages often aren't in place—we've spoken at length about assessments today—and I think it comes back to that word 'communication' again.

We need to start the discharge planning process earlier. For me, when somebody comes into hospital, yes, they're there to get better, but one of the first things you should be looking at is how long should we keep them here, how long do they need to be in this setting, and what can we do to start that discharge process, almost from when they come in. If I come in, for example, with a broken leg, I know I'm going to spend probably a couple of weeks in hospital in traction. But, when I come in, that's a fairly fixed time frame. Ward staff should be aware of that, and they should, I believe, start that planning as early as possible, so that, when medication regimes are arrived at, they can immediately communicate that to pharmacy, so that there's a supply ready and waiting. They can communicate to transport that this person is progressing like this in their physio and are likely to need transport on one of two or three days. So, there's a bit more advance planning, and it's not so much, 'Okay, this person's ready to go home, let's get some drugs, let's get some medication ready, let's get some transport ready, let's get this ready, let's get that ready', and it's all a bit last minute, and it shouldn't be.

Okay. It was one of the three recommendations, wasn't it, in that dementia cross-party group report. I was going to treat, as a second and separate question, the recommendation about working in a multidisciplinary way, but what you've just described now is that those two recommendations are the same one: if you work in a multidisciplinary way, you will be able to move towards giving those slots that could make a big difference.

Yes, absolutely. The three, I think, flow together. So, just for the record, the three were the trialling of set discharge slots, ensuring a multidisciplinary team approach to discharge planning, and discharge teams to ensure that care plans, medicines and transport are in place prior to discharge. Now, they are, for all intents and purposes, kind of the same; certainly, the last two flow nicely together. If you communicate and work together in teams, you're going to have things in place a lot earlier.

On the discharge slots, we spoke about either a two-hour slot in the morning between 9.00 a.m. and 11.00 a.m., or a two-hour slot in the afternoon between 4.00 p.m. and 6.00 p.m. The reasoning for that was people living with dementia are often at their most aware and alert in the morning, once they've had a bit of breakfast, a bit of food, and they've been up and washed. People living with dementia, we often see a deterioration in their cognitive abilities throughout the day as they get tired. You know, you've probably experienced this yourself. By the time you hit sort of 6, 7 o'clock, and you're on your two-hundredth page of committee evidence, you're absolutely exhausted and you can't think straight. For people living with dementia, that is magnified and is worse. So, discharging them at night, late in the night, is not a particularly good idea. That morning slot is there to ensure that people living with dementia have their—or are certainly enabled to be at their best at that time of day. It was something suggested to us by multiple people living with dementia.

The 4.00 p.m. to 6.00 p.m. slot was something suggested to us by family carers and unpaid carers who are in work, because it enables them then to plan their day around that. They can work during the day, pick their loved one up in the afternoon or early evening after work without the pressure of, as Angela described, having to drop everything and run to pick up your loved one from hospital, because they're in a wheelchair, waiting in reception to go home. 

The recommendation that you have about stopping any night-time release of patients, that's just a no-brainer, is it, that one.

Yes.

It's still happening, though.

It is, yes. One of the stories we heard during the cross-party group evidence collection was of a lady discharged from hospital in Carmarthen who lived in west Pembrokeshire. She was discharged at midnight and was expected to find her own way home. She was living with dementia, couldn't do it; there's no public transport, there were very few taxis at that time. It was lucky that, in this case, a neighbour had phoned the hospital to find out what was happening, because he was concerned for her welfare, and had jumped in his car and was already on the way when she was in the process of being discharged, so he arrived about half an hour after she'd been discharged and was able to take her home. In other situations, that might not have happened, and then you're looking at a situation where you've got somebody living with dementia, incredibly vulnerable, probably disorientated because they've had lots of information thrown at them very quickly in an unfamiliar surrounding at night, and that's not good for anybody.

No. We're down to the last few minutes. I think a few recommendations almost write themselves there perhaps, certainly guiding us in a particular direction. I'll just wrap up if I can by asking Huw, firstly, are there any other obvious recommendations that you would really like to see in the report that we publish, perhaps something that could be done quickly, perhaps something taking a bit longer, but crucial that we actually have it in there.

So, there are two things I'd like to put on the committee's radar. One I think is slightly more short term, one I think is slightly longer term. The first is a development of a nationally recognised indicator of a diagnosis of dementia. We have read codes, and various hospitals use the Butterfly scheme. It's not something that is rolled out widely across Wales, and the read codes have just been reissued to health staff. But what I want, or what I would call for, is something that is nationally recognised that can go into a patient's notes, into a patient's medical file, so that, wherever that file goes, whichever hospital ward, whichever department has that, on the front page or the first couple of pages, the ones that are often flicked through most, is something that indicates that person has dementia so that all the staff that come into contact with them that see those notes know to contact a family carer or the care home to understand what that person's specific needs are, or to look for a form, something like 'What matters to me' or a 'Who am I' form.

The second thing I would suggest the committee looks at is full implementation and staff training on John's Campaign. I hope you're all aware of the excellent work that John's Campaign does, and I think that their work is absolutely vital in ensuring that people like Angela, those who deliver unpaid care, those who deliver care for people with dementia, can access their loved ones at any time in the hospital to help with those small tasks that maybe medical staff don't have the opportunity to do. It's something we see implemented piecemeal across Wales; it's something we'd like to see rolled out fully across every single hospital in Wales.

Thank you.

Thank you for that. I've totally enjoyed being part of the process. My main recommendation is the training, training for all members of staff who are on the ward who interact with the patients, and regular updates in training, because we're learning all the time about different types of dementia and how different types of dementia affect the individual. That, to me, would make me feel happier if my father ever had to go back to hospital again, because at the moment, it terrifies me, him going back into hospital.

Thank you so much, Angela. Thank you, Chair. Diolch.

Thank you, Rhun. Thank you, Angela, as well, for your attendance this morning. It's powerful evidence, and I think, on behalf of the committee, we not only thank you for your work, but all unpaid carers who support their families and friends as well. So, thank you very much, Angela. Diolch yn fawr iawn. Huw, as well, thank you for your time this morning. We'll send you a transcript of the proceedings, so please look over that, and if anything comes to mind, and for you, as well, Angela, after the session, then by all means—. If you think you've forgotten something or have something more to tell us, then drop us a note and we'll take that into account as well in our final deliberations. Diolch yn fawr iawn. Thank you very much, both. With that, we'll take a 10-minute break. We'll be back at 10:45.

Croeso, bawb. Welcome back to the Health and Social Care Committee. We move to item 3 today. It should be, of course, noted that Tuesday was International Women's Day and issues around women's health is one of the committee's priorities, when we discussed our forward work programme at the beginning our term last year. So, we have an open session today that I hope will help us in terms of prioritising other areas of work as well. I will ask those on the panel this morning to introduce themselves, please, for the public record.

Thank you, Chair. Good morning, everybody. I'm Deborah Shaffer, from Fair Treatment for the Women of Wales, a patient-led women's health equality charity. I'm a health service user and a patient volunteer with the organisation. Thank you.

Hi, everyone. Thank you for having us today. My name's Dee. I'm the engagement officer for Fair Treatment for the Women of Wales. I'm actually the charity's only paid employee, working 14 hours a week. I'm also a patient; I'm a disabled woman living with ME, fibromyalgia, endometriosis and asthma.

Hi, I'm Gemma Roberts. I'm the policy and public affairs manager for British Heart Foundation Cymru and I co-chair the Women's Health Wales Coalition with Debbie.

Lovely. Thank you all for being with us this morning.

Wales does not have a women's health plan. What difference would a women's health plan make? Who would like to address that?

I'm happy to go first, Chair. I should say, first of all, that FTWW, as mentioned, is a patient organisation. Speaking on behalf of patients across Wales, we believe that something of this nature is absolutely vital to drive improvements in women's healthcare experiences across Wales. I should point out that it's very much part of a wider context, where we've seen both the Scottish Government and the UK Government developing their own women's health strategies. As patients, we're really keen not to see patients here in Wales left behind. We see it as a really good opportunity to address some of the underlying health inequalities that patients report to us all the time in Wales. Some of the priorities that emerged from the coalition's work over the last almost 12 months have been things like access to specialist services, a need to improve data where women potentially aren't part of clinical trials, or wider research where findings aren't disaggregated according to sex and gender. We're also really keen to see that patient voices are heard, and actually, that's one of the key things that's emerged and kind of underpins what's going on in Scotland and England, the fact that so many women feel that their voices aren't being heard when it comes to their healthcare. And the other thing that we established as a priority as a coalition was the need for improved training for health and care professionals. Thank you, Chair.

Thank you. Gemma Roberts, before you come in as well, can I just widen the question, and ask you whether there is currently enough public and professional awareness around women's health? Perhaps you can address that point as well as what you wanted to say.

That was actually going to be exactly my point: in the plan as we've outlined it, I think initially and primarily, we've tried to outline the health inequalities that exist, and I think initially, just by recognising these health inequalities where they exist, from female traditional women's health, kind of gynaecological health, as well as other areas like heart disease; there are inequalities across the board, and I think simply initially by raising awareness of these inequalities among the public, among health professionals, and among Welsh Government, we can start to drive change and to close those gaps. But the plan is needed, to be a place to see all of these inequalities as they exist. Well, I say 'all'; the plan we've put is not exhaustive, but we've done our best to cover as much as possible. But without a plan initially, we haven't got a place, we haven't got the evidence and a place to say, 'These are the inequalities that exist; these are the things we need to solve, and this is how we do it.'

And perhaps, Dee Montague, if I can ask you as well: is there anything in that health plan beyond what is obviously health, so anything beyond the NHS? I'm thinking about wider issues in society, about housing and other issues as well that should come into a women's health plan.

I think, as Gemma was saying, addressing those inequalities; that's what's going to help. I think the plan for a healthier Wales didn't specifically mention women's health, so it's things like that, where there's that disparity. We make up 51 per cent of the population, and if the healthcare isn't meeting our needs, that can contribute to further inequalities as well. Everything is kind of woven in together, I think, and obviously, we've focused really heavily on health, but there are definitely inequalities there that we should be looking at as part of that. I think I've said all of that correctly. Deb and Gemma, if there's anything you feel I've missed, please do say so.

Only to add that the rationale for us in focusing on a clinical plan is that we have this evidence from the over 40 charities that we work with—we have this evidence about direct inequalities that exist in treatment and care. So, that's why we've decided to specifically focus on this, but that is not to say that we don't think that other areas are incredibly important. We're not certain about what mechanism there needs to be in terms of looking at inequalities in terms of prevention, because we know that they exist as well. But we know that the Welsh Government is working on a kind of NHS overhaul with the NHS executive with the quality statement, and we wanted to make sure that that didn't happen without women's health being a primary consideration for Welsh Government.

Just to add to that, if I may, the quality statement is very much based on the template that is being used by Welsh Government and the NHS here in Wales now. So, it does have a very clear clinical focus. What we've tried to do is ensure that it has a holistic life-course approach, so it does discuss different health issues or conditions that may crop up during a woman's life. In the same way that it is very clinically focused, we've also made clear in the introduction that there will be a need for further dialogue and discussion. We've suggested that a mapping exercise take place to find out what other groups are working in this space that could potentially have implications for women's wider health inequalities, and that we work together to make sure that there is collaboration and that there's oversight. But I think, in terms of what we've produced, this clinical document, in a way, the narrowness of it, if you like, as it stands, should also be seen as a strength, because we're really aware that these things, these health issues—access to health services, et cetera—are things that can be addressed, actually, in a relatively more straightforward fashion, if you like, than the much wider, deeper inequalities, which do require much more wider discussion with a whole host of stakeholders. So, as I say, we actually see it as a strength and something that could be really focused upon in the first instance, with discussions taking place subsequently.

Thank you, Deborah. I'll bring Jack Sargeant in at this point. Ask any supplementaries, then come on to your questions, Jack, by all means.

Thank you, Chair. Just a supplementary, then, quickly. I don't want to delve too much into endometriosis because I know colleagues are going to, perhaps, ask some questions about that later on, but there's a petition by Beth Hales—an inspirational woman, Beth is—and she's submitted a petition about endometriosis to the Senedd Petitions Committee. In the conversation I had with her, she actually said, 'This isn't just a health issue, this is a social justice issue.' I can see nodding, so I'll take agreement from that. The Minister has said her officials are developing a women's health proposal. Should this not be across Government? Should all Government officials be involved in this proposal? Does the social justice Minister have a role to play here?

Do you want me to start?

Well, Gemma put her hand up—

Go on, Gemma.

—so, Gemma, then over to you, Deborah. Gemma Roberts.

Just to say, in the same say that 'A Healthier Wales' is intended to be a cross-governmental work plan, we'd envisage the same for women's health. And we have referenced that there is a role to play, not just for social justice, because it absolutely is a social justice issue, but in education. It's an educational issue where, actually, we should be going to schools and teaching about women's health issues. It comes into housing. It's really, really pan-governmental, and it's not really limited to health and it's not really limited to social justice either. The wider case around—. The whole thing of health inequalities faced by women cannot be solved just by the health Minister. And so, what we're asking for in terms of this clinical plan is a good start, but definitely, definitely not the end. And that goes for endometriosis and basically all of the conditions that we've listed in the women's health plan that we've written.

And Deborah, you wanted to come in.

Yes, it was essentially just to echo what Gemma was saying there. Endometriosis is a really, really good example, actually, Jack, of where it isn't just a health issue, but actually where there is some good practice starting within the Welsh Government and the various departments involved. So, for example, we know, of course, that endometriosis affects one in 10; it's as prevalent as diabetes or asthma, yet one of the biggest reasons for the huge diagnostic delay, which is around nine years in Wales, is the fact that symptoms are normalised, they're dismissed, not just by women's wider circle, but often by women themselves. They don't appreciate necessarily that these symptoms require medical support and they shouldn't just be suffering in silence.

So, the reason I mention this being a good example of a cross-Government approach is because we know, for example, that the social justice Minister is leading on a period dignity strategy for Wales, and that various menstrual health conditions, of which endometriosis is one, are part of the discussions. So, you've got the social justice aspect there. But, similarly, within education, we are delighted, on the back of our campaigning and that of others, to see menstrual well-being education now being part of the new curriculum in Wales. So, in actual fact, these things are all coalescing and we hope that, in the future, for future generations of women, their well-being will be preserved and improved.

Having said all of that—just to finish, sorry Chair—there are key health issues that we do need to address with endometriosis and similar conditions. And that's why I mentioned right at the start that one of the priorities that was expressed by the coalition is around improved education for healthcare professionals and also access to specialist services. Thank you, Chair.

And Jack.

Thank you, Chair. I think colleagues will delve into endometriosis in more detail later, so I want to steer away from that if I can. I did have some questions on the coalition, but I think I don't need to go into that, because there does seem to be an agreement on the immediate priorities—I think you've already covered that.

You've already said, Debbie, in your opening remarks to the Chair, that there are experiences of women not being listened to, perhaps, or feeling—. We know that more than 100,000 responses to the UK Government's consultation shared this and it seems to be, from what I'm hearing, a similar position in Wales. Obviously, at the very start of this year, we had the changes to cervical screening in Wales and I know that the charities, in evidence, suggested that that was the right thing to do, but perhaps there was poor communication of the issue, which I took real issue with, within the Senedd on that. I came at it from an angle that we have to rebuild trust here for women; we're starting over and we have to do that again.

So, given the fact that the Welsh Government are developing a proposal and the importance, I believe, of listening to those real-life stories, have you got any recommendations about how the Welsh Government should collate that information and speak to the women of Wales and hear properly—? How do they collate that and how should that information be shared and implemented? Because that's the really important question to help rebuild that trust that we've perhaps lost.

I just want to say, Debbie, Gynae Voices might be a really good example of this, with co-production. I think you're right, Jack, when you have patients who have, maybe, gynaecological conditions and they've been waiting multiple years for diagnosis. My own personal experience was that I had two laparoscopies for endometriosis with general gynaecologists who found no disease and when I then saw a specialist privately, 23 years after my symptoms started, I had stage 4 endometriosis and the surgeon said it was in the worst 1 per cent that he had seen of the disease. So, all of that time, this was dismissed as irritable bowel syndrome, as being in my head, as me being weak, with low pain tolerance and things like that. So, when it then comes to me going for a smear test—I don't need one now, I no longer have a cervix, which is fantastic. [Laughter.] But in those days, when you had to go in and I would say, 'I find this very painful', I would be told, 'You're being very silly, this isn't painful; it's uncomfortable, but it's not painful' and things like that. We've seen as well campaigning that we've supported with one of our fantastic volunteers around pain during the insertion of coils and things like that—patients just not being listened to.

So, when it comes, like you said, to how those changes to cervical screening were communicated, there was absolute uproar and it's because—Debbie and I had conversations at the time—it was very likely that patients weren't in the room when those conversations were happening: 'Right. This is how we'll communicate it; it's going to be fine.' And the same can be said for the design and the delivery of services, especially when it comes to female health. Debbie, now might be a good time if you're able to discuss Gynae Voices, because you sit on that forum, I think that that would be really useful.

Yes, I'm happy to elaborate on that a little bit if that would be useful. In north Wales, with Betsi Cadwaladr health board, we co-facilitate and co-chair, as patients, with health board clinicians in the women's directorate and management in the women's directorate, a forum called Gynae Voices, and it's been cited as an example of good practice by the Royal College of Obstetricians and Gynaecologists, in their workforce report that came out, I think, just a couple of weeks ago. But, essentially, what it does is it brings clinicians, management and patients together in a safe space, where everybody's voice is heard equally. And we're able to work together on improving local services—service developments, service delivery in north Wales, in the women's directorate. We co-produce patient information. We've co-produced business cases for new services. You know, we're just currently working—sorry to bring up endometriosis again, but that is one of the pieces of work that is going on at the minute, around improving services in north Wales, including the upskilling of the local gynaecology workforce.

But we're also now just about to start on a piece of work around improving information that's given to patients in gynaecology after they've had an operation. Because at the moment, many patients have their surgery, the consultant will come around and speak to them whilst they're in recovery, so, they're semi-conscious, and they can't remember what's been said to them. This isn't just a Wales issue, I hasten to add; this is something that happens across the UK, possibly even further afield. But, you know, in north Wales, we're making a start on looking at how we can improve information exchange, so that patients are informed, so that they have their concerns answered and they know where to go for further information and assistance, if they need it.

But, if I may, Jack, I just wanted to answer your question slightly more widely, around patient involvement in this particular plan and its implementation. I think Dee touched upon it, that it's all very well that we could ask Welsh Government to do increased engagements, surveys, et cetera, et cetera; the problem, though, with that kind of approach, is that you always tend to attract the same audience and have the same people responding. As a patient-led organisation ourselves, and a disabled women's organisation, to us, it seems far better and far more effective and efficient to utilise existing networks and communities, to engage with them, to identify who your key advocates are. Because, let's face it, we talk about co-production, but we can't possibly have every impairment and every issue, every condition around those tables. But what we can do, or what Welsh Government could do, or health boards, or whoever, is work really hard to identify who those organisations are, who the key advocates are, and then really invite them to be part of the conversation, and to be an equal part of the conversation, from the very beginning, where services are conceived, where they're developed, and part of the oversight and scrutiny as well. Because, actually, we are experts by experience, and we can say where the gaps are, where the problems are. And, actually, if you went to most patients, or certainly organisations like ours, we'd say, 'We really, really want to help you with this', because there's so much waste and inefficiency going on, and it's really just because we're not always enabled to be around those tables, and I think that's a key starting point. I hope that helps a little bit.

Okay. Thank you, Deborah. Gemma Roberts wanted to come in.

Yes. I completely agree with absolutely everything that Dee and Debbie have both said, but in addition to that, the patient voice is even more incredibly important in Wales. We have such a massive data gap in Wales. So, to give an example, I mean, we know that women are 50 per cent more likely to receive an initial misdiagnosis for a heart attack, but what we don't know is why that is. And so, we have to speak to women who've had heart attacks and have been misdiagnosed, who tell us that they were initially diagnosed with panic attacks. But that's not something that we can see from the data, so the only way to fill in our gaps, our knowledge gaps, is to speak to women with these experiences, speak to—like you said, and like Debbie said—the third sector, which does have a really big part to play here, where we do have those patients whom we speak to. So, involving the third sector in any discussions like that and trying to include patients as much as possible at every step.

So, I mean, from this particular example that I gave in terms of heart attack, we wouldn't know how to solve the problem of misdiagnosing women if we didn't ask women what they were initially diagnosed with and what their experience was like. So, now we're recommending that there's continuing professional development for clinicians about the risk of heart attack to women, but without those conversations with women with these experiences we just would not be able to make that recommendation. So, it's just vitally important at every stage of developing any plan.

Jack.

Thank you, Chair, and thank you for—. I was going to ask a supplementary on this, but, Debbie, in your closing, you answered that already. What I'm trying to get into here is what is the recommendation for the committee to make, and it seems to me—. I can't pre-empt the recommendation that the committee will decide to do, but it seems to me that we have to recommend that the Welsh Government—because it's got to be the Welsh Government that does this, not health boards; it has to be the Welsh Government that does this—speaks to the types of organisations like the one you've mentioned, gynae voices. Perhaps you may know some other organisations that we don't, and perhaps you could share those with the committee after this meeting that we can have a look to. Because that seems the way for the committee to take this forward, certainly in my view, and, obviously, we'll have this conversation in private.

Just one final question from me, Chair, in terms of how we build women's voices into the governance in the NHS and in terms of leadership roles. Do you see that there is a need to appoint, perhaps, a woman's health champion or ambassador? Is that something that we should look at, or is that just lip service again, or is it actually needed? What's your view on this type of role? Who would like to come in there?

Go ahead, Deborah.

You like going first. [Laughter.]

You know, that's really interesting, Jack, and I don't think that that's necessarily something that came up within the coalition's discussions. Perhaps, Gemma, you could remind me of this—I don't recall it coming up. However, I don't think, necessarily, that that doesn't mean it wouldn't be valuable. I think the key thing there is to ensure that such an individual, once again, has really worked hard to identify and establish those links, because we don't necessarily want just one person who is making all the decisions and leading on policy development without that consistent and sustainable involvement of people with lived expertise. So, again, that's probably something that we'd need to consider further, but those are just my thoughts in the first instance.

Okay. Joyce, I'll bring you in if it's a very brief point just on this specific point. Joyce.

A brief question. The imbalance in status within the health service between, say, nurses, practice nurses, GPs, junior doctors and how to ensure that the people who know, who see things frequently and want to raise their voice within those internal structures on behalf of women, because most of those are women, how they get listened to.

Gemma, did you want to come in on this as well, I think?

Yes, so my point was more to Jack's question, about a women's health champion, but I'm happy to plod off for Debbie or Dee to answer Joyce's question.

Okay. Do you want to come in now, Gemma, on Jack's point then?

Yes. It was just—. So, about a women's health champion, so that is something that is recommended in the Scotland plan. One of their pillars is heart attack, and they have recommended a women's health champion on that. It's something that we did discuss in terms of—. So, at the moment there are implementation groups and networks for particular disease areas, and, actually, a champion might be a really good way, on those individual disease networks and implementation groups—. A champion on those might be a really good way to just make sure that, in those discussions, women's health and women's voice is something that's being considered whenever those discussions are taking place, and it is something that they've implemented in Scotland. So, it's an idea, but definitely not a silver bullet.

Thank you, Gemma. Dee or Deborah, do you want to come in on Joyce's question at all? Deborah.

I'll have a go. Thank you, Joyce. One of the key recommendations that we mentioned that's emerged from this quality statement is around enhanced training for all healthcare professionals in managing women's health issues and conditions. There's quite a bit of evidence emerging. Again, it's been really, really difficult to establish, actually, what kind of level of training is going on in the first stages of medical training and then whether there is any sort of space for an additional module in continuing professional development on women's health. But, apart from that, and, I'm sorry, I'm going to mention it again, but you will know, of course, that endometriosis nurses have just been recruited across Wales, something about which we're really delighted. But, as part of their training and as part of the general role as we see it, advocacy, Joyce, is one of those key things. So, you mentioned the need to empower healthcare professionals to also articulate where they're experiencing issues. Let's not forget that healthcare professionals also have health conditions; let's not forget that healthcare professionals are also women who are living with endometriosis and what have you, and other issues, and may not potentially be able to access services themselves. So, it's empowering people generally, I think, to overcome biases and stereotypes that we all encounter in everyday life, ensuring that these topics are not taboo and that everybody feels empowered to discuss them.

But also, Joyce, just related to your question, it's really interesting—. I mentioned access to specialist care right at the start, and we have a system in Wales at the moment where GPs, for example, don't necessarily have the autonomy or authority to refer patients directly to a specialist service, a tertiary service, if it's outside of their own health board, for example, and I feel really quite sorry for GPs, because there are patients going backwards and forwards to them. We know, in Wales, as mentioned, the evidence shows nine years diagnostic delay for endo and 26 GP appointments, and, in that time, patients are going back repeatedly with the same problems that aren't being resolved locally, potentially within their own local secondary care offer, but the GP doesn't have the authority to make that referral, even though they can see that that is what the patient would need to improve their well-being and to save the local health service so much money. We've got a massive backlog at the moment, thanks to the pandemic. That would just make such a huge difference. So, it's certainly something that's mentioned in the plan that we've put together and is definitely something that needs to be addressed.

Gemma Roberts, you wanted to come in as well.

Yes. I just wanted to emphasise again the role of the third sector here. So, for example, we have—. And not just the third sector, but also bodies like the Royal College of Physicians, who are actually a part of this coalition. So, in terms of the third sector, those bodies, we have the links to the healthcare professionals as well. We have that already, so please use us. A lot of our conversations around women's heart health are very much backed up by clinicians. So, we have those links, so, yes, we'd encourage Welsh Government to just reach out and use our networks. 

Lovely, thank you. Apologies for having to say this, but, because we've got so many questions to ask, you might not all get a chance to answer every question, just to help with timing. So, Rhun ap Iorwerth.

Who fancies going first?

Go ahead, Gemma.

Yes, I can come in on that one, but Debbie will be able to speak much more widely on this. That's such an incredibly difficult question, and the answer is really not easy. What we've found from our work at BHF is that these biases exist and they are ingrained and they are societal, and a clinical setting is part of society, and so those biases exist within a clinical setting as well. So, I think that's part of the wider area where we're looking at. Education definitely comes into that, not just in a clinical setting, but in society, but that continuing professional development for clinicians so as that we aren't just focused on any condition as being a man's condition, but also on women's health. And then I think definitely medical research has a role to play there as well, and the design of medicines. But, again, Debbie can speak much more widely on this.

Thanks, Gemma.

Gosh, yes, that really is a huge philosophical issue, isn't it? And I think Gemma has covered everything in that regard, in the sense that we are living in this cultural and societal landscape where women's voices and experiences have, traditionally, been unheard, dismissed. We can trace it way, way back to things like the development of the word 'hysteria', which we know comes from this concept of this wandering uterus causing women to be crazy, insane, or what have you, whereas, actually, more likely, their experiences were down to a gynaecological condition, as you mentioned, Rhun.

So, yes, there's a huge amount of work to be done, and it is going to take time. It is not going to be an easy fix. There is definitely a role to play with regard to education. There's definitely a role to play, we believe, with regard to public health. So, for example, having literature about commonly experienced women's health conditions widely available in lots of different spaces so that you're imparting the information that women need to actually seek help in the first instance.

Gemma also touched upon the need to improve medical training. So, if we're talking about the clinical staff, as far as we know, from what we can gather, women's health, and particularly gynaecology and those associated conditions, maybe only get six weeks of coverage throughout the whole of that period. So, it would be really interesting to evaluate what is the reality there and what can we do to improve that. What can we do to ensure that patients with lived experiences are invited in to help with the training of healthcare professionals so that you're hearing those voices right from the very start of your professional career?

We've mentioned this as well, but it's also about reaching out to organisations like ours, like Gemma's, to work with patients and patient groups to identify the gaps in service provision as it stands currently, to look at what the needs are. Forgive me, I know I'm focusing on clinical staff, but it's around co-producing pathways for patients that are going to work, that meet their needs, and you don't know what those needs are unless you've actually spoken to the people who are living with those issues and experiencing those barriers. And it's then just, I think, having the willingness then to keep up that really co-productive approach and work together on improving things. And it will require investment and it will require a really focused approach, but I believe it can happen.

And do you know what? It strikes me that in putting a practical set of measures in place—a women's health plan—you're breaking the cycle of something far deeper than practical, medical issues. There's still stigma around menstruation, there's still stigma around menopause, which is remarkable, really. How do you make sure that having that plan in place—a concrete women's health plan—then starts empowering women to come forward to talk earlier about medical problems, issues to do with their body and menstruation? How do you make that connection? How do you break that cycle? Gemma.

Because I'm from the British Hearth Foundation, I can mainly speak towards heart health, but what we've found from patients is that we need a women's health plan that pushes out this information, that increases public awareness, that knowledge, that empowers women into going to seek help, and to push for their diagnosis—'something is not right here'. Without that information, women are just sort of thinking, 'Oh, maybe I'm having a panic attack' when they're actually having a heart attack. So, that's the first step—really pushing that information, because that's what's going to empower women to be able to push for those diagnoses with their GP, and push for further testing.

I just wanted to also come back to the point you made earlier about traditional women's health being pushed to the periphery. Actually, you'll find that women's health in terms of general health, in terms of diseases that impact on men and women, women's experience of that disease is also pushed to the periphery. So, when we study hearts and we study heart attacks, we're studying male hearts and male heart attacks, and actually, women need to be included in that and we need to think of all of these diseases as being something that impacts both, and making sure that women's experiences are not pushed to the periphery, like you said.

Dee, you wanted to come in.

Rhun, I could talk to you all day about philosophical stuff around women's health and all of that. I think as well what we need to really acknowledge is intersectionality; so, young people growing up now, we should be proud that we've created a world where people can come out as trans and non-binary—it's still not easy—they can come out as queer. We know that there are boys having periods, there are non-binary people having periods, and we need to normalise that, and I think the work of Bloody Brilliant has been fantastic for that—it's been bloody brilliant—acknowledging that and talking about people who have periods, and things like that. When you start at a really young age—. We know that there are young people at school starting their periods when they're seven years old, so by the time they get to year 11, at secondary school, and then they're sat down for the talk, that's far too late. So, in terms of that education, it's not about scaring any children or anything like that, but just really normalising what happens.

I think there's an issue as well with gender roles. We do enforce gender roles on young children without really thinking about it. It's what we've always done. So that then contributes, as women and girls get older, too—'They're a bit hysterical, they're a bit over the top'—and women not going to seek help because they're primary care givers for their families, for their children or for older relatives, so, not putting their health first. I think what would be incredible is if we could really nail this enhanced training, so when people are going to the doctors, when they're going to their GP and they're being perhaps asked questions, or they're presenting with issues, these sort of things are being just asked about anyway. It's really nerve-wracking going to your GP to say, 'I'm really struggling with something', especially when it's gynaecological, because you've had that shame and stigma impressed upon you from a young age. It might be that your dad doesn't like having period products out on the table—'Put those away, that's disgusting'. It might be that you get laughed at at school when you flood through your trousers, and things like that. It happens so regularly.

So, I think being able to go to the GP—. And obviously that will help people from other cultures as well, where this really is a shame and a stigma, and we ourselves can't sort of smash that now. But yes, I think being asked that question—. And something we find as well is that, when patients do present to a GP, or to secondary care or anywhere, they're asked to describe the symptoms, and when you've got a uterus and the person sat opposite you doesn't, and they won't understand, and you're sort of, 'Oh, it's like somebody stabbing me', it becomes very dramatic, and then we're accused of being dramatic or being over the top. So, that's like a really easy win, actually—that healthcare professionals can say, 'Tell me the impact of your symptoms' and that's when you can say, 'I can't drive anymore. I'm not able to go to work for a week of every month. I'm getting in trouble because my attendance is bad. I'm missing school because I can't get out of bed because of the pain. I've got burns on my tummy from where I've used a hot water bottle; the burns are preferable to the pain of the symptoms that I'm having'. That's really common.

So, there are those kinds of things. As I say, I could talk to you all day, so I'm going to stop talking now, and maybe we'll catch up after this.

I'm sorry we don't have more time.

Thank you very much.

There we are. Thank you. Joyce Watson, you wanted to come in with a question on this.

Yes. We've done almost all of the things, but I think the big thing here is the ability for people within a healthcare setting and, perhaps, more widely to recognise when women need help with a gynaecological problem, wherever that might be. It might be a mother in the household; it might be, of course, a father in the household or a brother. So, it's about trying to get that out more widely. We've rehearsed the endometriosis issue, and there is a whole petition and statements going through, and I mentioned it on International Women's Day as well. But, the point is that there are many other issues as well that, perhaps, haven't got that high focus because they haven't got people like you driving them.

Does anybody want to comment on that? Gemma.

Yes, just to say that, Joyce, you're absolutely right about increasing the ability of clinicians to be able to see when these people need help. I think, in addition to training, that looks like a culture shift. I was having a conversation with a clinician yesterday—a cardiologist in Llanelli—and she told me that, actually, when somebody comes with symptoms of a heart attack—so, you know, palpitations, possibly, and a feeling in your left arm—she's trained to look for a heart attack, rule it out and then, after that, you can reassure the patient and say, 'This is anxiety and this is how you can manage it'. But, with women, the assumption is anxiety, even though the training is there to do these tests to make sure that women are not having a heart attack first. So, even with the training being right there—the training is as we would want it to be—the culture is such that the training is not being listened to in many cases, and women are being told that they're having a panic attack and not a heart attack. It's not a question I can necessarily answer, but I think training is definitely a start towards that culture shift, but it's probably more than that as well. Sorry, it's an open-ended answer and probably a bit of an unhelpful one.

Thank you. We've got about—. Sorry, Deborah, did you want to come in briefly on this?

I just very quickly wanted to mention that the document that we've prepared between us, as Gemma alluded to at the start, I think it's had something like 60 organisations and individuals contribute to it, and as I said at the start, we were really keen to ensure it had, as far as possible, with the limited resources at our disposal, a holistic and life-course approach. So, it does incorporate lots of different health conditions and issues that are known to have a disproportionate impact on girls and women. One of the things I feel we'd be doing a disservice not to mention is, for example, autism. It's a key example of where there is this data gap, and the data gap perpetuates the poor experiences that girls and women are encountering, because we have this male model, if you like, of how autism presents, and that isn't inclusive of how girls and women present.  Those people are experiencing huge diagnostic delays and a real lack of support that's tailored to their needs, and it has huge knock-on effects. We were talking, weren't we, about wider health inequalities, and I think this is one of those places where, if we get that kind of aspect of it right, early on in that person's journey, you massively improve their life chances; you improve their ability to remain in education, to get a good career, to have relationships et cetera, and that just makes so much sense—

Okay. Thanks.

Sorry, Chair.

No, I'm so sorry. We need a whole day for this, don't we? We haven't got that, so I'm so sorry. We've got three sections left that we want to cover, three blocks of areas, so that means that each Member asking a question has got about nine minutes each. So, I'm hoping that, witnesses, you won't mind—if the Member interrupts you, it's only in order that they can get to ask all their questions. And apologies in advance that we've only got limited time. Gareth Davies.

Thank you very much, Chair. I'll try and be as succinct as I can with my questions. And I suppose, as well, it's to thank you for the contributions that we've had so far this morning, because we're often in cases where we have to add additional questions and sort of prise a bit more information out, but you've been so open, frank and honest about a lot of women's issues. My first question was around heart disease, but I think Gemma's covered quite a lot of that already in her contributions. In terms of dementia care, in the first session, we heard from Alzheimer's Society Wales about dementia care. Just in terms of specifics to women, do you think it's the case that women with dementia receive worse medical treatment than men with the same condition? I suppose as an additional to that, we could maybe cover some of the mental health topics, because the 'Together for Mental Health' plan is due to be published by the Welsh Government in autumn, and the extent women's needs should be specifically considered in all future mental health policy development.

Who would like to dive in there? Deborah, you go ahead.

With regard to dementia, Gareth, I have to be honest, that isn't one of the areas that we included in this first initial draft of the plan. That's not to say that the evidence isn't out there to support what you're saying. It's just that as we've said, we know that as it stands, it isn't exhaustive, and that there are other additional clinical priorities that absolutely need to be included, and dementia is likely one of those. But interestingly, just as an aside, there's evidence emerging that suggests that providing women with hormone replacement therapy, HRT, early on in their menopause journey can actually serve as a preventative method for lots of different issues, including, as Gemma will undoubtedly mention, cardiovascular health, but bone fractures, osteoporosis, potentially dementia as well. We've mentioned that this document needs to be seen as a starting point for further discussions, and potentially dementia is one of those areas.

Just with regard to the other mental health conditions and issues that have been incorporated into this quality statement or plan as it stands, again, we know it's not an exhaustive list, but currently, just to mention that as it stands, the QS does include perinatal mental health. We know that as it stands, there is still only one specialist dedicated mother and baby unit for perinatal mental health in Wales—that's in Swansea—and many patients have to go outside of Wales for their care, which is fine, and we understand the reasoning for that in many different complex issues. But particularly when it comes to mental health, I think we need to be mindful of the fact that at times of great distress like that, women may want to be able to speak Welsh, and so there's no guarantee of that, obviously, if they're going to Manchester or even further afield. So, perinatal mental health features in there, also premenstrual dysphoric disorder, eating disorders, self-harm, trauma and complex PTSD. The reason that they were part of the QS as it stands is because we know, the evidence shows, that they have a disproportionate impact on females, girls and women, so they needed to be in there. I hope that helps a little bit.

Yes, that's fantastic. Thank you. I suppose in addition to that, it's promoting health and disease prevention in terms of ensuring that women have information about the benefits of having a healthy lifestyle, such as quitting smoking advice, alcohol consumption, the importance of physical activity and sport as well. So, in your opinion, do you think that the Welsh Government are putting enough emphasis on these things to help women in some of these—better health and, indeed, disease prevention as well?

Gemma.

I can come in on that. It's a really interesting point, and I would start off by saying that I don't think it's down to individual awareness and individual choice on the whole. There are a lot of things that Welsh Government can do and have committed to doing to support a healthier lifestyle, so improving stop-smoking services and improving access to stop-smoking services, things like minimum unit pricing—we know that they are working to reduce alcohol consumption—and in terms of physical activity. And food, really, is the key thing in terms of weight management, and Welsh Government have committed to introducing legislation to reduce price promotions on the unhealthiest food and drink. So, those are really the key things that Welsh Government can do and has promised to do, but what we want to see is that to happen really quickly. It's been promised by 2024, this legislation to introduce restrictions on price promotions, and we want to see that as soon as possible. And it's these things that are going to support women and men to live a healthier lifestyle and to make the healthier choices. Information is important, but it's definitely not enough, and there are wider things that we can do to make the healthiest choice a more attractive choice and the easiest choice.

I appreciate that, Chairman. Thanks. My final question would be—

Deborah wanted to come in on this one as well—[Inaudible.]

Oh, sorry.

Just really, really quickly, I think this, again, speaks to why we need to be engaging with women, with stakeholders, and finding out causation for some of these behaviours. I think what's really, really interesting, Gareth, is that in a couple of the appendices that are part of this document that we're discussing today, particularly on mental health areas, spoke about how alcohol consumption, smoking et cetera were actually sometimes coping mechanisms for dealing with other issues in life, including chronic illness. So, it's about engagement, again, isn't it? It's about finding out what is driving girls and women to be participating in smoking, alcohol or whatever, or avoiding physical activity. Because only then can you design the services that they need to meet those needs, if that makes sense.

Yes, indeed. Thank you, both, for your answers. Just finally, as a question to the three: in what ways could the Welsh Government help ensure that there's greater focus on women's health in the training of healthcare professionals? So, whether that's something that's incorporated into a nurse's training or some of the degree courses. Do you think there's enough of that at the moment, and what could they actually do to improve that situation?

So, I'll bring in Dee first, because Dee wanted to comment on the last question as well. But you've got about less than a minute. 

Apologies for that, Chair. I didn't realise.

No, not at all. You've done very well. You've got about a minute each, for each witness, before we move on to the next section. So, Dee.

No worries. I just wanted to come back to that previous point. There are lots of us, disabled women, who can't exercise, can't engage in physical activity. So, myself, I used to be really physically active, I used to play sport. When I got ME, if I now exercise, that can create much more harm; it can leave me bed bound. So, I'm at a level now—I'm talking to you, so this is quite a miracle for somebody with ME. So, that needs to be inclusive as well, because, often, we're kind of just lost. Once it's for mental health, 'Go and do some physical activity. Go for a run.' I can't do that, so we need to make sure that all of that support for mental health, support for physical health, is inclusive of those people who can't go for a run, can't do that exercise. Because I think, at the moment, the advice is quite basic, it's not inclusive. I now have severe brain fog, so I can't remember your following question, so I'll pass that over to Debbie and Gemma.

Thank you, Dee. Thank you for that as well. Deborah.

So, Gareth, I think your question was about what Welsh Government can do to address training needs for healthcare professionals. Was that right?

Yes, particularly in the actual training of healthcare professionals at a foundation phase. So, when they're studying in university, is there more that they can do? And also, as well, what you've just raised as well, further training for qualified healthcare professionals. They're trying to juggle a lot of things in working on the front line, it takes a lot of time, but—

Deborah, you've got about 30 seconds. I'm so sorry. I apologise in advance.

First of all, I think what needs to happen is that we need to establish what's on the curriculum and what isn't and address those gaps, and we know that women's health, possibly, isn't covered as comprehensively as we'd like. Welsh Government should certainly be investing in continuing professional development for healthcare professionals and incentivising the take-up of that. And I think you'll know, as we're speaking from a patient's perspective, that we would really want to see patient involvement in the design and delivery of training to make sure that it is inclusive and addresses needs.

Thank you. Gemma, I'll bring you in at the end, if that's all right, if we've got some time, if that's all right. Joyce Watson.

You talked about the gender equality intersectionality, so I'm not going to ask those, but I would have. But I am going to ask very quickly about the disparity of the expectation that a woman living with a disability, a learning disability particularly—their life expectancy is 18 years shorter. I know you've talked already about autism, and there will be other conditions that are not being recognised, so is the issue here—this is my question—the unconscious bias that exists in terms of getting that early diagnosis, and if it is an early diagnosis that is the key factor? I'll let you answer.

Do you want me to—?

Yes, please, Deborah. You look like you want to come in, so by all means.

I'm going to try my best. Again, this isn't my area, necessarily, of expertise, Joyce, so please forgive me. Clearly, early diagnosis is an absolute key factor, but we've also spoken about how it's not just about early diagnosis, it's about then ensuring that we've spoken to people with lived experience, that we've spoken to those key stakeholders and that we've developed support packages that really are tailored to the needs of those people as individuals. And I think we've spoken about it at length, haven't we, today, around this data gap, where women's and girls' experiences aren't necessarily part of the research? And where research is happening, it hasn't been disaggregated, so we're not fully appreciative of how women and girls present with different issues and what their needs are. And that's certainly something that we should be addressing as a priority, as well as speaking to people with lived experience to just look at how we can best devise services that really will, as you've mentioned, Joyce, improve people's life expectancy. With autism, there's evidence to suggest that autistic women are more likely to die by suicide than men, but that doesn't really get very much attention. So, it is about raising awareness of that issue, raising awareness of that terrible—you know, it is a terrible, terrible issue—and doing what we can to prevent it.

Gemma, you wanted to come in.

Yes. This actually feeds in as well to the comment I made about Gareth's previous question about what the training looks like. So, I think, similarly, with early diagnosis, across the board, we can see that women's symptoms are considered to be symptoms that are atypical and that assumption means that it's not considered as something for women. So, actually, I think a big part of the training—to answer the question that you put forward, Joyce—is that that early diagnosis is more likely to happen if we start teaching about, 'Okay, there are no atypical and typical symptoms to be experienced by men or women', and what clinicians learn is that, 'These are the list of symptoms. Here are all the symptoms; none of them are atypical.' And at that point, it might be easier for women to achieve an earlier diagnosis, when they present with what are currently considered atypical symptoms.

Two key things here, then, coming out: disaggregated data, widely disaggregated data—I'm going to throw a curve ball here in a minute, but I'll leave that just for a second—but there's an issue that is rather dreadful and that is the disproportionate expectation and inequality for minority ethnic women when it comes to gynaecological or obstetrical expectations. And those of us who've studied it know that, particularly in pregnancy and childbirth, there are huge disparities, and that data would throw that up. So, do you have something, quickly, that you can say to us beyond what's already been said?

Dee.

I'm not sure about what's not already been said, but, yes, just emphasising the importance of inclusivity, having those voices in the room. We talk about the data gap and things like that. When you bring black and minority ethnic people into that mix, it gets even worse. There is still a legacy from slavery that black women don't feel pain, and that was as a result of brutal things that happened then. So, there are still people within our medical profession who sort of hold that belief. There are things like rashes that won't appear on black skin, and things like that, so there are all these different issues. And, obviously, I'm a white woman, I can't speak on people's lived experience, so that is why it's so important to have that intersectionality and have people in the room who are affected by these issues when things are being decided.

Thank you.

Gemma Roberts. Gemma wants to come in, I think, Joyce.

Yes, just on the point of data. I mean, the data is incredibly poor, and we would just encourage that, without the data, and without knowing where these patients are and how to support them, we don't have improved services. So, I'd first of all massively encourage that Welsh Government improve data collection and the dissemination of that data. And then, secondly, we don't have that data, so we do need to fill in the gaps, and a massive part of that is going out to these communities and finding out exactly what their experiences are and how that can inform service development.

And I did notice—. I've done an awful lot of trying to end violence against women, and I did notice the point you made about including health as a part of that discussion, and also, therefore, solutions, and I'm really pleased that you have, but I don't want to ask questions on this. This is my curve ball: I was a founding member of gender budgeting in Wales, and I'm a firm believer in following the money. So, it's not mentioned in your document, but it's fairly obvious the way you spend the money tells you where your priorities are. So, in terms of gender budgeting—and I'll leave this hang if you haven't got any answers—have you done any gender budgeting analysis when it comes to, therefore, the money that is spent on certain conditions being spent equally between male and female, whether that's in terms of research, whether it's in terms of care, or whether it's in terms of service delivery?

I'll bring Deborah in, because she wanted to comment on the previous point, and then if you want to address anything in Joyce's latest question as well, Deborah, by all means.

I mean, it was just literally an addendum to Gemma's last point, which is the importance of reaching out to stakeholders and key advocates to find out about their experiences. But, actually, it goes even beyond that, doesn't it? What women really want is not just to keep retelling what can be really traumatic stories, but actually to be involved, then, in co-producing the solutions and developing the mechanisms that are going to ensure that future generations don't have to encounter those same problems going forward.

In answer to your question about gender budgeting, Joyce, no, we haven't applied that lens, I don't think, explicitly to this piece of work. But I think, probably, again as a patient representative myself, what I think I would want to emphasise is that—. What we're talking about here, about improved data collection, better training, ensuring that there is support for sustainable co-production, access to specialist services, all of those things—. I think we really need to see them as being a really prudent investment, because we hear all the time from patients who are just going round and round and round in circles, not accessing the best care that they should be accessing, and that is really inefficient for them, and wasteful. If we want to improve, if we want to reduce inefficiency, and we want to reduce waste in the future, we just need to be working together on ensuring that those needs are addressed and that we look at them together and address them together and we make them a priority.

Thank you. Thank you, Deborah. Thank you, Joyce. Mike Hedges, you've got about—well, the last set. As long as our witnesses don't mind, we'll go on until 12.05 p.m., as long as that's okay with you. Thank you for all agreeing to that. So, we've got about nine minutes, Mike, for your last section.

A lot of what I was going to ask has obviously been answered as we've gone through it. I've got two questions, one I think needs to be answered with a 'yes', hopefully. Should we have an agreed improvement health outcome for women in key areas in a plan, and should that plan be reported on every year to see how much progress is being made? I have serious concerns about anybody who has a 10-year plan, because there are nine years of inactivity and one year of action, or if you've got a five-year plan—it's the same thing, with four years of inactivity and a year of action. Annual reports—. Do you think both of those are a good idea?

Who would like to go on that? You're all saying 'yes', I think, but, Gemma, you wanted to expand.

Yes, as from the agreed improvement—. Specifically, in terms of areas where women and men suffer from the same diseases, the agreed improvement that we could look at is really simple, and it's equality. It's equal outcomes for men and women, so there are really simple markers there that we can work towards. But in terms of reporting and stuff, that's definitely something that I would leave much more to service designers and Welsh Government.

My other question is much more complicated, unfortunately. We talk about health and that people have illnesses and they have them as if nothing else is happening in their lives. I believe that one of the greatest drivers of ill health is poverty, and you'll probably agree with me that single parents living on benefits are disproportionately women, they disproportionately live in private rented accommodation, they disproportionately live in accommodation that is cold and damp, and they disproportionately eat less well than all the people here in this room today, because what they eat is driven by the lack of finance to do so. When I get told by a woman she likes toilet paper and she eats it because it makes her stomach feel full, that's bound to have an effect on health over a period of time. Should there be more done across Government to tackle not just, 'You're ill, we're going to make you better', but, actually, to deal with the root causes of ill health, and, in many cases, one of the root causes of ill health is driven by poverty?

Who wants to address that? Deborah.

Absolutely, Mike, and one of the things that we've made crystal clear at the outset of this document is the need for those wider discussions to take place to ensure that different sectors, so not just Welsh Government, not just the public sector, but that everybody is working together, collaborating, pooling their resources, discussing, again, with people with lived experience who can describe to them what the situation is and what would best help them, and then we work together on developing and implementing those solutions.

I think the other thing I was just going to say is that poverty is such a cyclical issue, as well, isn't it? if we come at this from the clinical angle, just for a start—we touched upon it earlier—if you've got a health condition, a health condition that isn't supported and managed properly at the start, you're much more likely, then, to fall into poverty, into poor socioeconomic circumstances, with all of the implications that come from that. I think it's also worth mentioning that, depending on your socioeconomic circumstances, that can also have a huge impact on your sense of power and voice and control over everything in your life—healthcare no exception. So, absolutely, it's a hugely complex issue, and we need to start having those conversations. We spoke about a mapping exercise in the first place to just establish who those stakeholders are.

I wanted also, Mike—if I may, very quickly, Chair—to come back to Mike's first question, which was around agreed outcomes and time frames. It's worth mentioning that the document we've put together has a series of appendices. Each one of those is focused on a different health issue or condition, and, actually, the way we've designed it is that each one of those can be lifted and used as a little mini action plan in its own right. What we would say is that those groups who've developed that evidence base, that appendix, should be part of the discussions around time frames for scrutiny and for reporting and ensuring that the agreed outcomes are in place and that there is a set time frame for achieving them.

Thank you. We've got a minute or so. Should we be talking more to people who have the lived experience? Is there a danger of us as politicians talking to you as members of third sector organisations and missing out the people who are probably most important, and it's those who have that lived experience? 

Dee might want to—sorry.

No, Deborah, you go ahead—go for it. 

I was just going to say, Dee is Fair Treatment for the Women of Wales's only paid member of staff. I think it's worth pointing out, Mike, that we are very, very much grass-roots. We are all patients and disabled women ourselves. But, yes, we can't possibly speak for everybody either. And you're absolutely right, what needs to happen is a really concerted effort around fact-finding, identifying who those advocates are and bringing them to the table, and also, I think, really properly valuing their time and their expertise and properly sustainably supporting their involvement. I always think there's a real risk that we don't properly value those voices and we kind of expect that they will keep repeating, as we've said, what can be quite traumatic experiences over and over again, with no real recognition of just what that requires and just how labour-intensive that is. And I think that's definitely somewhere that Welsh Government should be looking to invest—around support and investment in those voices.

Dee Montague.

Yes, I just wanted to fully endorse what Debbie said. I think what I want to say as well is you know the work that FTW has been doing with BHF, with other people; you've come to our focus groups where we've done consultation responses and things like that. I think it's fundamentally wrong that we're not funded in any way. We're trying to get funding, we're trying to do that bid writing, we're trying to do all of that, but to have this organisation, where at this point in time we can essentially only afford 14 hours a week of paid employment—the rest of that is given on goodwill. So, just a bit of a plea here, I think, moving forward, that any of that co-production, any of that inclusion of patients' voices is sustainable. I don't know if it's going to be a patient who has a specific role and that's paid, I don't know, but that's what we need to really consider moving forward.

Can I just—and I've got a couple of minutes—agree with that? The danger is, of course, that the patients get overwhelmed by professionals. I've been in some of these meetings where there's been two or three patient representatives, and a dozen, maybe 20, people representing the medical and social care profession, who all knew each other, who were all saying the same thing, and they can both intimidate and overwhelm people who are coming along to say what their experience is like. Do you recognise that?

Yes.

So, all the witnesses are nodding, but, Gemma, you wanted to come in as well—nodding in agreement, I should say.

Just to say that I agree with you, and it's not an either/or situation where because you're talking to the third sector you're missing out on patients. We have that link to patients, and we develop policy on the basis of what patients and clinicians tell us. So, we can act as—not to speak on behalf of, necessarily, but we can definitely support in terms of the patient voice and to not, as you said, continue to ask patients very traumatic questions. Basically, again, just use us.

Can I come in with a couple of questions? Deborah, can I come back to you at the end, and the point you were going to make there, perhaps you could sum up in some of the final questions here? Can I just ask, how do you see a women's health plan fitting with the wider picture when it comes to other issues around women's health and well-being? I'm specifically thinking of the prevention of violence against women, domestic abuse and sexual violence blueprint. How does that fit in there? I'm aware there's different—. From the research, I can see it provides to Wales as—. There's a different outlook at this in Scotland, perhaps, to England. Dee.

It's just important to note, really, again, it's intersectional. Disabled women are often completely asexualised. If we have partners, they're seen as our carers. We're seen as a burden. They're seen as heroes for putting up with us. We're actually—I think it's twice as likely to be at risk of domestic abuse. So, when it's one in four for non-disabled women, that doubles for disabled women. So, it's difficult then in terms of accessing, again, the appropriate support and help we need, refuges being inaccessible. All of those things. So, we need to make sure that all of these things dovetail in, align and work together, I think.

Okay. And this is the final, final question now, and, Deborah, if you wanted to make the point you were making, incorporate it into what I'm going to say now, by all means. The Minister has confirmed that she's planning to publish the quality statement in the summer, followed by a woman and girl's health plan in the autumn. Is there anything that you would like to see our committee do to support that? And I ask you to make any final comments you want to make—incorporate that into your final response here as well. Deborah. Sorry, Gemma Roberts first, then Deborah. Gemma.

I would just say, we have had support from Welsh Government on this already, but just to make sure that what goes into that quality statement and what goes into that plan are actions—identifiable actions with recommendations on the basis of the massive amounts of research being done. There's a smorgasboard of policies in there that you can see where we've worked hard to put these policies forward, and what we want to see is that these are put in as priorities for action as soon as possible. So, as soon as we get a plan, we need to start seeing those actions implemented in the health boards so that women can start feeling the benefits of those.

Okay, thank you. I'll come to Deborah, then Dee last. Again, I'd specifically ask is there anything you think that us a committee should be doing ahead of those two statements and areas? Deborah.

I think it just comes back to everything we've been saying throughout, actually, Chair, which is around making sure that any plan that comes out, that you are confident as a committee, having engaged with coalition members, that that plan reflects what has already been posited by huge numbers of organisations and patients, and that those same people that have been involved in the coalition are part of those ongoing discussions about developing the plan. And I'd also just reiterate the priorities that we've already established as a coalition right at the start. The key themes that we established were: access to specialist services; improved data collection; support for sustainable co-production; and training for health and care professionals. Those were the four themes that really did emerge as top priorities for the coalition, so we'd be really, really pleased to see the committee focused on those as things over which you have oversight and are able to scrutinise.

My final point, really, was just to mention the disability rights taskforce that Welsh Government has set up. It was in answer to Mike's question as an example of good practice where at least half of the participants, Mike, around that table are disabled people, and that way you—. If you make that a key criterion for these groups—executive groups, high-level groups, all the way down—then you ensure that people don't feel outnumbered and they do feel sufficiently empowered to speak up and say their piece.

Thanks. Dee, any other points that Gemma or Deborah haven't mentioned?

No, no other points. I agree with them all. Great.

Thanks, fantastic. Thank you ever so much for this morning's session. Sorry it's been rushed, but it's an overarching session for us, so that's the point of this session today—to allow us to identify areas that we want to dig into in greater detail, which we will then have more time to look at in a larger inquiry. So, it's so much to fit in this morning. But diolch yn fawr iawn. Thank you very much and thank you for being with us this morning. By all means, we've got a couple of small items to go through, but leave the meeting if you want, as you see fit. So, diolch yn fawr iawn. Thank you very much.

Diolch yn fawr iawn.

Thank you very much for the opportunity.

Thanks a lot. Have a good day.

There we are, okay. I move to item 4. We have lots of papers to note. I won't go through them all, but it's various correspondence between our committee and the Welsh Government and other Senedd committees, and some correspondence as well from other bodies. So, they're all in the agenda pack, in the public domain. Are Members happy to note those papers? Thank you very much, that's great.

In that case I move to item 5, and I propose, in accordance with Standing Order 17.42, that the committee resolves to exclude the public from the remainder of today's meeting. Are Members content? Yes, we are. In that case, we will now proceed into private session.