Health and Social Care Committee, 10 Mawrth 2022 | Open Senedd

Open SeneddEnglish

Health and Social Care Committee, 10 Mawrth 2022 | Open Senedd

Huw Owen

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.

Dim cyfieithiad Cymraeg wedi'i gyhoeddi09:32Gwylio #Cofnod swyddogol

Huw Owen

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—?

Dim cyfieithiad Cymraeg wedi'i gyhoeddi09:44Gwylio #Cofnod swyddogol

Huw Owen

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.

Dim cyfieithiad Cymraeg wedi'i gyhoeddi09:49Gwylio #Cofnod swyddogol

Huw Owen

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.

Dim cyfieithiad Cymraeg wedi'i gyhoeddi09:53Gwylio #Cofnod swyddogol

Huw Owen

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.

Dim cyfieithiad Cymraeg wedi'i gyhoeddi10:01Gwylio #Cofnod swyddogol

Huw Owen

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.

Dim cyfieithiad Cymraeg wedi'i gyhoeddi10:10Gwylio #Cofnod swyddogol

Huw Owen

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.

Dim cyfieithiad Cymraeg wedi'i gyhoeddi10:14Gwylio #Cofnod swyddogol

Huw Owen

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.

Dim cyfieithiad Cymraeg wedi'i gyhoeddi10:23Gwylio #Cofnod swyddogol