Item 7 on our agenda this afternoon is the debate on the Health, Social Care and Sport Committee's report on the use of antipsychotic medication in care homes. I call on the Chair of the committee to move the motion—Dai Lloyd.

Motion NDM6765 Dai Lloyd 

To propose that the National Assembly for Wales:

Notes the report of the Health, Social Care and Sport Committee on use of antipsychotic medication in care homes, which was laid in the Table Office on 17 May 2018.

Motion moved.

Thank you very much, Deputy Presiding Officer. I’m very pleased to open this debate today on the Health, Social Care and Sport Committee’s report on the use of antipsychotic medication in care homes. We decided to carry out this inquiry in response to the increasing concerns about the inappropriate use of antipsychotics in care home settings to manage challenging behaviour of people with dementia. As we all know, antipsychotics are usually used in the treatment of mental health conditions such as schizophrenia, and only one, risperidone, in some circumstances, is licensed in the United Kingdom to treat the behavioural and psychological symptoms of dementia.

However, during our scrutiny of the Welsh Government’s draft dementia strategy, we were told that the use of antipsychotics is of great concern to people with dementia and their families. Antipsychotics are associated with an increased risk of cerebrovascular adverse events and greater mortality when used in people with dementia. Studies estimate that there are at least 1,800 extra deaths each year among people with dementia in the UK as a result of their taking antipsychotics, and that the likelihood of premature death increases if people take these drugs for months or years rather than weeks. It is therefore vital that antipsychotics are only used where absolutely necessary, that usage is reviewed regularly, and that only the lowest doses are given to the patient.

During March and April 2017 we held a public consultation and we received 18 written responses, representing a range of healthcare organisations and professional groups. In addition, we heard oral evidence from a number of witnesses. I would like to thank everyone who contributed to our inquiry, and I’m particularly grateful to the people who had been affected by the use of antipsychotic medication for sharing their experiences with us. Our report contains 11 recommendations to the Welsh Government, based on the evidence we received, and I thank the Cabinet Secretary for his response and his subsequent letter in these past few days, in which he provided further details about his response to some recommendations.

Our first recommendation relates to data collection. We were told that the lack of data and records means there is great difficulty in determining a national picture of prevalence and patterns of prescribing antipsychotic medications within care homes. We know that work is ongoing with the NHS Wales Informatics Service and the NHS Wales Shared Services Partnership to make improvements and collect new data, but there will still be limitations with the new data being collected and gaps in our understanding of the number of older people in care homes being inappropriately prescribed antipsychotic medication. We therefore recommended that the Welsh Government should ensure that, within 12 months, all health boards are collecting and publishing standardised data on the use of antipsychotic medication in care homes and report back to this committee on progress at the end of that 12-month period. This recommendation was only accepted in principle.

In passing, obviously, out of the 11 recommendations the committee made, six are accepted in principle, four are accepted, and one is rejected, this recommendation about data collection being accepted in principle. The Cabinet Secretary, in his response, states that there are significant limitations with routinely collected prescribing data, which, he says,

‘means it is not possible to readily attribute prescriptions to residents in care homes’.

However, we heard in evidence that it is already happening in some health boards, which raises the question: if some can do it, why not all? The Cabinet Secretary has committed to convene a group of relevant experts to examine the usefulness of various data sources and advise on how such data can be used to reduce prescribing. This seems to suggest that they will examine existing data sources and advise on how such data can be used to reduce prescribing, which does not imply that the committee’s recommendation will be accepted at all. I would appreciate the Cabinet Secretary’s clarification of this point, along with further information on the remit and timescale for this expert group.

Recommendation 2 relates to compliance with NICE guidelines. The NICE guidelines on dementia advise against the use of any antipsychotics for non-cognitive symptoms or challenging behaviour of dementia unless the person is severely distressed or there is an immediate risk of harm to them or others. However, we were told that antipsychotics are being used as a default position in care homes and some hospital wards when people with dementia are difficult to deal with. We were also told that current practice is not fully compliant with the NICE guidelines. We agree with witnesses that it is vital that there is full compliance with NICE clinical guidelines. We have therefore called on the Welsh Government to ensure that all health boards are fully compliant with NICE guidelines on dementia and report back to this committee on rates of compliance within 12 months. It is therefore disappointing that, while sharing the committee’s concerns about the use of antipsychotic medicines for the management of behavioural and psychological symptoms in dementia when such use is not in accordance with guidance issued by NICE, the Cabinet Secretary has only accepted in principle this recommendation, which again suggests that it will not be fully implemented.

Our third recommendation relates to person-centred care. We were told that increasingly, antipsychotic medication is being routinely administered in response to challenging behaviour, in place of staff working to identify the root cause of that behaviour. A person living with dementia presenting challenging behaviour often has an unmet need that they may be unable to communicate, and if that need can be identified, the situation can be greatly improved without antipsychotic medication. It is therefore important to look at the person as a whole to understand what is causing a particular behaviour. The committee felt very strongly about the need to look at the person as a whole in order to understand what may be causing a particular behaviour, and we heard lots of examples of good practice checklists that could be used by staff in care homes to identify the possible causes behind an individual’s behaviour. One such tool is the adverse drug reaction profile—ADRe—a succinct, convenient tool that asks nurses to systematically check their patients for signs and symptoms relating to the undesirable effects of medicines and share this information with prescribers and pharmacists reviewing medication regimes. 

We therefore recommended that the Welsh Government should ensure that every person with dementia presenting challenging behaviour receives a comprehensive person-centred care assessment of their needs. It should work with relevant health professionals to develop a standardised checklist tool like the one outlined, to be used by health and social care staff to identify and address or rule out possible causes of challenging behaviour, including unmet physical or emotional needs, and include a requirement for consultation with the individual and their carer or family. The checklist should be available within six months and must record the action taken to demonstrate that all other options have been considered before considering the use of antipsychotics as prescribed for people with dementia. Again, this recommendation has been accepted in principle. The Cabinet Secretary’s response states that as part of the roll-out of the 'Good Work' training and education framework, attention has already started to be given to the development of comprehensive assessment and care planning to support the person-centred approach. However, evidence to the committee suggested that awareness of the 'Good Work' framework was low and it has yet to be applied by many care homes.

In his follow-up letter this week, the Cabinet Secretary reinforces his support for the broad approach of tailoring the care a person with dementia receives to a person-centred assessment of their needs. He also states that he believes that the use of a single standardised tool cannot accurately reflect every person’s individual needs and circumstances, and commits to working with stakeholders to develop a common understanding of principles. I do understand the Cabinet Secretary’s point about not wanting to endorse one particular approach or tool, so would welcome more detail about how he plans to work with stakeholders, and what this work will look like.

Despite six accepted in principle out of 11 recommendations, I do welcome the Cabinet Secretary's acceptance of recommendation 7 and his assurance that an integral part of the role of the allied health professional dementia consultant will be to improve access to allied health professionals for care home residents. Similarly, the acceptance of recommendation 8 and the recognition of the key role of speech and language therapists in improving outcomes for people with dementia is also to be greatly welcomed.

However, overall, I am very disappointed with the Cabinet Secretary’s response. While it appears that the majority of our recommendations have been accepted or accepted in principle, the accompanying narrative suggests otherwise, with a lack of real commitment and clear timescales for tackling this issue as a priority.

We believe, as a committee, significant cultural and systemic changes are needed to ensure antipsychotic medications are prescribed appropriately and not as a first option. Unnecessarily medicating vulnerable people in care is a profound human rights issue, which must be addressed. We therefore urge the Welsh Government to take action on the evidence we have gathered and the recommendations we have made to drive progress and deliver the solutions needed to protect some of our most vulnerable citizens. Diolch yn fawr.

I'm grateful to all the witnesses who came to give evidence to the committee. Some of the personal stories that we heard were absolutely harrowing and have been an eye-opener for a great many of us. 

Cabinet Secretary, I'm sure that you will agree with me that it's completely unacceptable that powerful medication is being used inappropriately or not being routinely reviewed—medications that subdue mind, body and spirit. Yet, on the other hand, we all say that we want to cleave to the principles of dignity and respect, which is why I found the Welsh Government's response to the committee's report utterly disheartening, because I think that our committee report really identified the fact that there is a vulnerable group of people who are not being treated with dignity and respect. People matter, all people matter, and the most vulnerable and the most defenceless in our society matter the most, as their voices are often the most marginalised and least heard, and some of the quietest voices are in residential care homes.

I found the rejection of recommendation 9 simply dismissive of a vulnerable group of people. Here we're asking for a method of assessing the appropriate skills mix required for care home staff and asking for you, Welsh Government, to produce guidance on this to ensure that there are safe and appropriate staffing levels in every care home. This morning, in our health and social care committee, you and your colleague the Minister for social care were there talking to us about how every person deserves a holistic treatment around them, that we want to look at the person in the entire narrative of their life, that we want to ensure that they're in the right place, having the right treatment, at the right time. Yet, dismissing this recommendation that people in care homes also have that right I find deeply concerning.

I find it deeply concerning because one of the reasons that you put forward is that there's already a gazillion regulations in place, talking about the types of staff deployed and the numbers of staff deployed, therefore you don't consider that an additional mechanism is required. Yet, we have Care Inspectorate Wales themselves saying that they are worried about care homes that carry the historical elderly mentally infirm, or dementia registration classification without actually having staff who have specialist training. Suzy.

Thank you for taking the intervention. Do you wonder whether the Cabinet Secretary's reluctance to sign up to this particular recommendation may be because they will be removing permanent nursing in residential care homes and that nurses won't be there for 24 hours, as some of them are at the moment?

That could be a factor. But I know, for example, as a person who has relatives who have struggled with dementia, I would be appalled if I thought that I was going to put a loved one into a home that had a classification that said, 'This is a care home that is able to deal holistically and in the round with a person who has dementia', and I would believe that, and I'd go, 'Oh great, my loved one is in a safe place'—not according to the Care Inspectorate Wales. 

Social Care Wales went on to say that it's vital that care homes are staffed by people who are sufficiently skilled to provide a person-sensitive and preventative approach to care. I absolutely think you cannot just turn around and say, 'Reccomendation 9 is unnecessary', because some of the watchdogs that you put in place to ensure that we're doing the right thing are saying we're not doing the right thing. Surely, Welsh Government, it is your absolute duty to get to grips with that and to make sure that the care homes are appropriately assessed to the right standards so that people know where they should be able to feel safe to put people that they love. 

Other recommendations that were only accepted in principle—also puzzling. I've got a few, but I'm actually going to talk about recommendation 2.

Recommendation 2 of the committee report says that we raise our concern that not all health boards are fully compliant with the NICE guidelines that advise against the use of any antipsychotics for non-cognitive symptoms of challenging behaviour of dementia. Now, you say in your response that you share our concerns about the use of antipsychotic medicines. You also say, and I'm quoting: 

'However it is not straightforward to determine whether a medicine is being prescribed in accordance with NICE’s guidance.'

Well, okay, I'm a layman—why not? This is a profession. It is full of professionals. They have to obey the rules. Why can't we ensure that a vulnerable person who may not have a voice, who is not being listened to, who is shut up in a care home, who may not have an advocate, who may not have a family member who is championing their cause, who will not be able to say, 'Am I on the right stuff?', who has lost that voice, or whose voice is so tiny we don't hear it—? Why, oh why, is it not possible for Welsh Government and for the health boards to know whether or not all of those people are being treated appropriately according to NICE guidelines that all the specialists have put together? 

There are other recommendations—I realise I'm out of time, Deputy Presiding Officer—but I'm really worried, because I think that 'accept in principle' means, 'It wasn't thought of here, we're not really prepared to do it, but we'll just palm you off a little bit and say, "Yes, we'll have a look at it".' We can't not have a look at it. This is a really good report, and these people deserve not to have inappropriate medication given to them when they don't need it. 

For me, this is absolutely a human rights issue. It is sometimes said that the measure of a decent society is how we treat our most vulnerable citizens, and, for me, that goes to the heart of the matter on this issue. 

As the Chair has said, only one antipsychotic, risperidone, is licensed to treat the behavioural and psychological symptoms of dementia, yet we know that there is widespread prescribing of other antipsychotics to those living with dementia, and that these antipsychotics bring with them dangerous side effects, risks of falls and risk of early death. Serious concerns have been raised about that practice by the Older People's Commissioner for Wales on numerous occasions, and in other reports to Welsh Government. This very issue is highlighted in the legacy report of the health committee in the fourth Assembly. 

So, the question for me today is whether the response of the Welsh Government provides the assurance the committee is looking for: that we are going to see concerted action to stop the inappropriate prescribing of antipsychotics. And I have to say, regrettably, that, for me, it does not. Why has the Welsh Government only accepted in principle the call that all health boards should collect and publish standardised data on the use of this medication in care homes? The committee heard evidence that some health boards are already doing this. Why is it not possible for them all to do it? Why has the Welsh Government only accepted in principle the call that all health boards are fully compliant with NICE guidance on dementia? The question we should be asking today is: why are they already not? 

Now, I really dislike the term 'challenging behaviour' to describe the behaviour that, more often than not, people living with dementia exhibit when their needs are not being met—when they are in pain, when they need the toilet, when they are lonely or bored. More often than not, it is those unmet needs that lead to the inappropriate prescribing of antipsychotics. That's why a number of the committee's recommendations focus on the need to ensure that high-quality, person-centred care is delivered by well-trained staff. 

Now, as has been highlighted, recommendation 9, which was designed to ensure that we have the right number of staff with the appropriate skill mix in care homes, was rejected. I know that the Cabinet Secretary has issued some further clarification on the reasoning behind that, but I would like to have further assurances from him today that the measures that he's referred to, the regulations that are going through, but also the nurse staffing levels Act, which doesn't actually apply to care homes—how that is going to improve the situation for care home residents.

Recommendation 10 calls for national standards to be developed to ensure that all staff working with people with dementia are trained in managing challenging behaviour. That was accepted in principle. Again, we have known for years that this is an issue. It was in the Older People’s Commissioner for Wales report, 'A Place to Call Home?' It should not be beyond the wherewithal of us to ensure that everybody working with our vulnerable citizens with dementia have that basic level of dementia training, and we've got a brilliant model for it in our Dementia Friends training. It's also vital to remember that there is really good practice out there in terms of things like inter-generational work. I had Griffithstown Primary School visit the cross-party group on dementia the other day, who spoke in such fantastic terms about the work they are doing with people living with dementia, which brings not just those people great benefits but also has been transformative for those children and young people.

I wanted to just conclude by just mentioning the final recommendation, which relates to the need to undertake some further work to look at the extent of the prescribing of antipsychotics to people on older persons' mental health wards in Wales. This is a subject close to my heart, as the Cabinet Secretary has heard me say before. These are some of our most voiceless citizens in Wales, and I believe we have a particular duty to ensure that their rights are upheld. That particular recommendation was accepted in principle, but it does sound, from reading the narrative, that that is something that the Cabinet Secretary is going to look seriously at, but I would implore him to do that with pace now.

It is also vital that he takes forward with pace the work on extending the nurse staffing levels legislation to hospital ward settings for people with dementia because they need that person-centred care. We have a duty, all of us, to listen to the voices of those people living with dementia to ensure that those voices are heard and to uphold their rights.

I think I can speak on behalf of all Assembly Members by saying that we often learn a great deal in dealing with various consultations and reports, and I will start my contribution with an admission: I hadn’t realised the scale of the issue that we were covering. I hadn’t understood the scale of the problem. But once we’d started gathering evidence as a committee, it became very clear to me and my fellow Members that the evidence that we were hearing and reading was extremely powerful and heart-rending, and it was like watching a scandal unfolding before us—or that’s how I felt—with witness upon witness reporting to us a story that was very consistent and extremely heart-rending.

I don’t think that what’s happening in our care homes and hospitals is happening because of negligence or malice, generally speaking, but I am convinced, following our research and report, that what is happening is abuse. That is the result and what is happening is that we have allowed the use of unnecessary medicines, which, to me, is akin to serious abuse, to become the norm, and we must put an end to it. The truth is that giving unnecessary drugs to vulnerable people is a very serious issue, and as we as a committee state very clearly in this report, it was a huge concern to hear just how often this was chosen as the first option, rather than the last resort. And that's why—because of the gravity of the situation—we are considering this. And that’s why we have made these recommendations to ensure that there is compliance with NICE guidance, that we need a checklist for care staff, that staff in care homes need to be able to deal with challenging behaviour, and so on and so forth.

I am so disappointed in the Government’s response. Although they have only rejected one recommendation, in looking at the ones they have accepted in principle, well, they may as well have rejected them. In practical terms, the Government’s response means that they are going to transfer responsibility for implementation to others. For example, in recommendation 2, the Government states that health professionals are responsible for compliance with NICE guidelines. In other recommendations, the Government simply say that they will ask stakeholders or advisory groups to consider this report when holding their reviews and updating their guidance. They don’t seem to believe that the Government has any role in publishing guidance and giving leadership in this area.

Would you take an intervention?

Of course.

On your point of the abrogation of responsibility, in saying that perhaps health boards should be the ones responsible for the implementation of NICE guidelines, do you think we need to give an organisation such as Care Inspectorate Wales more teeth on behalf of the Government, or on behalf of us, so that they can make sure that those who break those guidelines are suitably punished?

I think that's a perfectly valid suggestion. The conclusions we came to were that there needs to be a whole range of bodies with teeth, and bodies that are empowered to help this systematic abuse, which is what it's turned into, to come to a head.

If we look at recommendation 9, which was rejected, the Government’s rationale is very confused, I think. It recommends that the Welsh Government should develop a method for assessing the appropriate mix of skills required for care home staff, and draw up guidance to ensure that there are safe and appropriate staffing levels in every care home. The Government rejects this by arguing that they don’t need an additional mechanism because regulations are already in place that make it a requirement for care home providers to demonstrate how they have come to decisions on the staff mix that they need. But it is quite clear that those regulations don’t deliver what this recommendation in our report is calling for. We are asking the Government to tell care homes what they should be doing and to put the guidance in place to assist those care homes to deliver that. What became clear to me is the role that pharmacists have to play, and they want to play a part—a far more prominent part—in resolving this problem. We need to empower them, and that’s the kind of proactive action that we need to see from the Government. So, yes, I’m disappointed in the Government.

I will close by echoing the words of the committee Chair, Dr Dai Lloyd, and words that have been spoken by others. We are talking, here, about contravening human rights. I am entirely convinced of that. Wanting to deal with that kind of human rights violation isn’t something that you can accept in principle. Each and every one of us should be determined to do everything necessary to safeguard some of the most vulnerable people in our communities.

I would like to place on record my thanks to the committee clerks, Members' Research Service staff, and the various witnesses who helped us conduct this inquiry. The witness accounts were often harrowing and were difficult to digest.

Dementia is a major public health issue in Wales; it is believed to affect around 42,000 people in Wales and is most common among older people. Dementia affects one in 20 over the age of 65, and around one in five of those over the age of 80. Globally, it is predicted that the numbers living with dementia will rise by a staggering 204 per cent over the next three decades. Unfortunately, dementia is the only condition in the top-10 causes of death without treatment to prevent, cure or slow its progression. We therefore have to manage the symptoms as best we can, and by Wales becoming a dementia-friendly nation, ensure that people with dementia live independently for as long as is possible in a supportive environment. People with dementia are vulnerable and it is important that correctly trained staff furnish a person with dementia with the very best standard of care to meet these very specific needs, and that dignity and respect are visible and adhered to at all times when helping these people, who are often without a voice.

As the disease progresses, those living with dementia will need more and more specialist care, and as the prevalence of the disease increases, we are relying more and more on care homes to look after those living with this disease, which is why it is concerning that there has been an increase in the use of antipsychotic medication in care homes in order to treat the behavioural and psychological symptoms of dementia. These drugs are not licensed for such use and their use is believed to contribute to the early deaths of nearly 2,000 dementia patients each year. This is a shocking statistic. It became clear, over the course of our inquiry, that these drugs are being routinely administered in response to the challenging behaviour of some dementia patients, even though that challenging behaviour is the result of an unmet need that the person with dementia is unable to articulate. It was also evident that a lack of access to allied health professionals was exacerbating the situation.

During our sessions with witnesses, it became evident that gathering the evidence on the use of antipsychotics was difficult, as the data was not collected and therefore readily available. The Royal College of Psychiatrists and the Faculty of Old Age Psychiatry called for audits to gather data on prescribing practices, which, they state, are critical to understand the prevalence and patterns of use of these drugs. I am therefore pleased that the Cabinet Secretary has accepted our first recommendation and that the Welsh Government will be taking action to reduce the inappropriate prescribing of these drugs. However, I would, as would the majority of my colleagues on the committee, like assurances that convening the relevant group of experts to look at this recommendation and the related recommendations won't take too long, and that we won't be looking at another few years before these recommendations are implemented.

I welcome the fact that the Cabinet Secretary shares our view that the use of antipsychotics for managing behavioural and psychological symptoms in dementia is unacceptable. I am grateful that he has accepted some of our recommendations, but I urge him to ensure that they are implemented as swiftly as is possible. Those with dementia are some of the most vulnerable people in our society and should be protected from harm, not put in harm's way simply to make someone's job easier. We have a duty to ensure that misuse of antipsychotic medicine for dementia patients is eliminated, and I look forward to seeing the Welsh Government make swift progress on our recommendations.

Thank you for calling me to speak on this very important report. I'm a member of the Health, Social Care and Sport Committee and I think this is one of the most important reports that we have produced.

I'm sure like many others in this Chamber, on Saturday I celebrated the NHS's seventieth birthday in my constituency with a stall and a birthday card for the NHS in Whitchurch in Cardiff North. It was a fantastic experience, because people were queuing up to sign, they were so enthusiastic about the NHS, people were telling me that their lives had been saved on three occasions, and other people talked about working in the NHS for 40 years, and it was a really stimulating morning. There were so many stories of care that it was wonderful, but the whole of that time in the morning, we didn't hear any of the stories about elderly people in care homes, or elderly people cared for by the NHS, and I think that is one of the key points—that those people can't tell us their stories, which is why this report is so important. We need to speak out for them, because they can't speak out for themselves. We do need to hear patients' voices and we do need to work out what are the care needs of people who are in our care.

I think that Lynne, when she was speaking, mentioned 'challenging behaviour' as a means of describing how people behave, and, again, I feel a reluctance to use that sort of way of speaking. But the important thing is to find out what are the real needs of people, the person-centred approach, and not to prescribe medicine that just effectively sedates them. We did hear some disturbing inquiries and the one that sticks in my head is the man in the care home who was constantly banging his head against a glass door. Instead of seeking a prescription for antipsychotic drugs, a carer worked out that why he was banging his head on the door was because he could see the door of a greenhouse that he wanted to go out to, because he'd been a gardener, and gardening had been his hobby all his life. He felt that this place would be a safe haven. That's an example that sticks with me in terms of how we've got to look at the person and not just take what may be an easy solution.

I wanted to talk now a bit about the recommendations from the committee and the Government's response. I was going to start with recommendation 3, which is really to reinforce what the Chair said when he made his introduction, because we did recommend that there should be developed a standardised checklist tool to be used by health and social care staff to identify the cause of challenging behaviour.

Quite a bit has already been said about the 'accept in principle' expression and how that is something that I hope we might move away from, but I know that, in the response, the Government says,

'developing one standardised checklist tool is not considered to be appropriate.'

I cannot really understand that reason for not developing a standardised tool, because recommendation 6 is accepted, where it says that

'medicines monitoring should be a key part of care homes inspection, and that Care Inspectorate Wales mandates documented evidence'.

So, I can't see why you can't have a standard tool that would be used for every care home, every setting where a person has been. It would give the staff the tools to check out every eventuality and make sure they weren't prescribing something when there was another reason for it, such as toothache, or problems with vision—you know, lots of things that are causing distress.

The Chair referred to the evidence we had from Professor Sue Jordan of Swansea University college of human and health sciences, who has developed the adverse drug reaction profile tool that has actually been tested and has been shown to reduce considerably the amount of antipsychotic medicines that have actually been used. It's been peer reviewed and has been very successful. I think that there's no point in reinventing the wheel; we know that there are toolkits that have been developed, such as the one by Professor Sue Jordan, and I think that it would make absolute sense to develop this toolkit to be used as a matter of routine in every care home, in every setting where an elderly person is being looked after. So, it's a matter of routine, the work has been done, we know about Professor Sue Jordan's work and other work that was presented to us, and I think that would be a clear way ahead for the Welsh Government.

I'm not a member of this committee, but can I really, really thank them for this report? One of the things I like about it is it absolutely conveys a sense of urgency, at least in terms of political decision making, for a quick and relatively straightforward response to a problem that we shouldn't have. I have to say I think it uncovers a whole range of other omissions that, frankly, I find pretty shocking.

Fist of all, can I say from my family experience that the correct use of antipsychotic drugs can be very useful? When, as a result of rapidly advancing dementia, my grandmother's delusion prompted her to threaten my equally aged grandfather with a kitchen knife, you could all see why a rapid response might be necessary as an emergency measure. Even so, and I admit I'm not sure how some of these meds work, why the report is not even stronger on the periods for reviewing use—. Because three months, to me, seems an awfully long time for someone to be on this type of drug at all if they'd been prescribed to deal with an episode of acute psychosis rather than a chronic and worsening pattern. When it comes to an individual who is exhibiting a sustained pattern of behaviour, that individual already has the right to a full assessment of his or her need under the Social Services and Well-being (Wales) Act 2014, as indeed does their carer, if we're talking about at-home care.

I want to know, when it comes to recommendation 3, why we're giving anybody six months to compile a checklist. This legislation is four years old—four years during which a list could have been compiled pretty universally, allowing for differences for individuals with particular presentations, and do you know, Minister—sorry, Cabinet Secretary—I'm really bored when I come to reading responses that say, 'We will work with stakeholders.' You've had four years since the social services Act came in. Why isn't this thing in place already?

In a similar vein, regarding recommendation 5, am I really reading that Care Inspectorate Wales—or Care and Social Services Inspectorate Wales, as it was, to be fair—hasn't been challenging the monitoring of individuals' medication harder as part of looking at care homes' compliance with care plans? I don't expect them to make medical decisions, but I would expect them to inquire as to long periods of no change in medication, or sudden increases or decreases in medication, particularly if the increases involve antipsychotic or other worrying drugs, and especially when you know that these drugs are being prescribed pretty much off label. I mean, was it clear in the evidence you received—I genuinely don't know—why NICE has not signed off these drugs for the use to which they're being put frequently now? I saw what you told about the benefits being outweighed by long-term consequences in some case, but the report talks repeatedly of inappropriate use without any clarity on what constitutes 'inappropriate'. It doesn't seem to me, from the report, that off-label prescribing is inappropriate per se, so what is?

I appreciate that what you need to answer this is reliable data, and so I'm pleased to see recommendation 1. But can I suggest, however, that, alongside a collection of quantitative data from health boards, there is a complementary qualitative data collection from care homes, who see the daily effect of the continued use of these drugs on residents over a period of time? That qualitative evidence might include not just whether the challenging behaviour seems to have improved or not, but what other elements of the individual's character, interests and capacity have changed as a result of that use.

Now, another shocker for me is recommendation 10. Is it really the case, considering dementia is hardly a new phenomenon, that NICE guidelines for training care home staff in dealing with challenging residents aren't already mainstreamed into induction training for new care home workers? Now, I realise, of course, there are problems with recruitment and retention in entry-level care work. Perhaps their sense of vulnerability due to inadequate training is part of the reason why they leave. And, yes, it's fine that Social Care Wales is looking at professional development and career paths, but how have CSSIW in the past been able to give the thumbs up to homes if their staff are not trained in this essential element of dementia care?

I raised the overall inadequacy of CSSIW criteria and reporting processes with Gwenda Thomas way back in the last Assembly. Lynne Neagle today has mentioned a legacy report of the last Assembly. How many dementia strategies will we need? Why is this still an issue? Because, even with my minimum wobbly bookcases dementia training, I can understand that possible confusion, and certainly communication difficulties, can be infuriatingly frustrating for anyone. If you can't explain the excruciating discomfort—even the hallucinations—of a feverish urinary tract infection or your distress at the loss of dignity that is inevitable when another person has to help you with intimate care, yes, you're going to get challenging. So, accepting these recommendations and implementing them is an easy one for the Welsh Government, Cabinet Secretary. You were eviscerated last week, as was the rest of the Welsh Government, on the 'Mind over matter' report, and I think you're making the same mistake with this, with your responses. I say to care home managers: don't wait for the Welsh Government, get training your staff now. And, GPs, don't wait for data: ask more questions when you're being pressurised by care home owners to prescribe. Safety first, of course, but don't let kindness and understanding get poor second in this atrocious situation.

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

Thank you, Deputy Presiding Officer. I do actually want to thank the committee for the work that they have undertaken in producing this report on antipsychotic medication in care homes. I recognise the tone of the debate and the disappointment that some Members expressed, but I do actually think that there is a large amount of agreement on the priority of action that is required to be undertaken on this. Actually, the 'accept in principle' is not a malign attempt to try and avoid recommendations or to explain why nothing will happen. It's actually because of some of the detail and how we want to work that through. We don't exactly agree on all the wording, but we do actually accept and understand the direction of travel the committee want to take in the recommendations. I have something more to say at the conclusion on how I want to actually be able to take that work forward and provide more information to the committee about what we are doing, but I don't think that's going to be possible in the time available in today's debate.

But the committee's findings did provide additional confirmation that our focus does need to be on the provision of person-centred care, and how we use non-pharmacological responses before considering a pharmacological one. And that has to be appropriate—appropriate prescribing in all instances. There is a clear focus on that in the dementia action plan that I launched back in February—again, a plan that was designed and delivered, working with people who are living with dementia themselves, their carers, as well as providers. So, it really has had buy-in from people across the dementia community about what matters to them.

The Government has agreed, or agreed in principle, 10 of the 11 recommendations, and it is about how we take those forward. Of course, I do recognise that the committee understand that there are steps that we are already taking to improve the availability of data, which is a key point that has come up in a number of contributions, in relation to prescribing antipsychotic medication amongst older people. We do acknowledge honestly in our response that there are limitations at present in our data collection, particularly in how you can attribute prescriptions to residents in care homes. The potential over-prescribing of antipsychotic medication is a concern, regardless of whether it is an individual who is resident in a care home, because, indeed, reducing rates of prescribing among older people in general would have a positive impact on the use of these medicines among care home residents too. I just want to reiterate the point about the fact that we will take seriously what we are proposing to do. So, just in relation to recommendation 1, the expert group that I said that I will be setting up, I expect that to report to me with advice before the end of the calendar year—so, not kicked off into two or three years' time to try and avoid dealing with the issue, but within this calendar year, to have advice and to update Members on action that we expect to be taken as a result of it.

A number of the recommendations made by the committee are about the availability and reporting of prescribing data. There is, of course, more to be done, and so we've accepted a range of those recommendations. I have, of course, considered again recommendation 11, and I have moved the response to 'accept' rather than 'accept in principle'. So, I have asked officials to convene a group of those relevant experts to examine the usefulness of various data sources. There is something there about—. The point of that is to help us reduce inappropriate prescribing of antipsychotic medication.

The committee also refers to the importance of ensuring that comprehensive, person-centred assessments are undertaken to enable the provision of generally person-centred care and support. That, of course, is a key focus of the dementia action plan—not just a plan, but a plan that is backed by £10 million of additional investment from this year to support delivery. Many of the dementia action plan points are consistent with the committee's recommendations, which should be no surprise—for instance, the reference to the need to enable people who work with those living with dementia to have the skills to feel confidence and competent in caring for, and supporting, those living with dementia.

So, within our response, we reaffirm our commitment to the roll-out of the 'Good work: A Dementia Learning and Development Framework for Wales' within care home settings. That framework does provide guidance on the training and principles for challenging behaviour, and I do recognise the description that Lynne Neagle has provided. It is about understanding what is behind that behaviour rather than simply saying that you just need to deal with it in the way that we recognise it is, on a far too common basis, dealt with, with inappropriate prescribing of medication. So, there's no disagreement about that. It's about understanding that behavioural distress and having alternative strategies for staff, whether they are health and care professionals with a professional qualification or, indeed, other staff working within the care home. The point about training is well understood as well.

I am pleased, though, to see a focus in the report on the use of allied health professionals, including speech and language therapists. So, allied health professionals, we recognise, make a critical contribution to enabling people to live well with their dementia. Those professions identify and address possible causes of behaviour that is described as 'challenging', including the unmet physical, cognitive, emotional and communication needs and how we provide interventions to reduce the level of stress and anxiety and indeed the frustration that we recognise often accompanies this. That's why, in terms of having the right number of allied healthcare professionals, the next stage of our 'Train. Work. Live.' campaign is going to be extended to include allied health professionals.

With the dementia action plan, we're working with partners to develop multidisciplinary teams around the individual to help provide person-centred and co-ordinated care, support and treatment. We recognise the need to ensure that there are good links between care homes and community services with the teams around the individual. The all-Wales dementia allied health practitioner consultant post, when recruited, will have a remit to work with care homes, health boards and local authorities to evidence and promote best practice from allied health professionals across our whole health and social care system.

I do want to try and address the recommendation that was rejected, on developing

'a method for assessing the appropriate skills mix...for care home staff' and to provide guidance to ensure safe and appropriate staffing levels. The aim of the recommendation isn't something that I oppose, but it is about that I think we've got the right frameworks in place through the Regulation and Inspection of Social Care (Wales) Act 2016 and the Nurse Staffing Levels (Wales) Act 2016. Now, I've written to the committee with more detail on the work that we have done and are doing, and that includes the work led by Bangor University, and their work concluded that there is no single evidence-based tool that will identify the numbers and types of staff to be employed in the care home sector, but the Chief Nursing Officer for Wales is commissioning further work to set guidance and support commissioners for placements within the sector. That will learn from the work to date already on implementation of the nurse staffing Act and the NHS national collaborative commissioning unit.

Now, there's something here about understanding the work we're already doing and understanding what we will do to actually make fit for purpose the legislative framework we already have and deliver a real and practical difference. But I accept that, of course, the committee and Members will want to come back and see if that is happening in practice. So, we'll monitor our progress on the recommendations alongside the dementia action plan. We've set up a dementia oversight of the implementation and impact group, and that will involve people who have been affected by dementia in their membership; they're actively involved in monitoring our success or otherwise, and they've already met for the first time in June. So, it won't simply be about the Government assessing its own action.

I do recognise and agree with the committee that inappropriate prescribing—and that includes not regularly reviewing prescribing—is a real cause of harm. There's no lack of concern or an approach from this Government that dismisses those concerns or is complacent about the need for improvement. And I will consider again the points made by Members in this debate in a number of areas that we have accepted in principle, and I will write again to outline the action we are taking to try and deliver on the purpose of the recommendation the committee has made, because we are looking in good faith at how we meet shared objectives, even though we don't agree on all of the detail. And I will of course update Members on the progress made in dealing with the recommendations and the timescales for action and future action in implementing the dementia action plan.

Thank you. Can I now call on Dai Lloyd as Chair of the committee to reply to the debate?

Diolch, Dirprwy Lywydd, and I'm very happy to reply to the debate. It's been an excellent debate, and I think that's testament to the quality of the contributions; obviously, it's a testament to the quality of the evidence we took over the months from many witnesses—both written and oral—and obviously to the quality of the support that we have as a committee from our clerks and our researchers. It truly is a team effort, and a justifiable team effort, because we are trying to address an injustice to a very vulnerable group of people, as we've heard.

I'd like to thank the Cabinet Secretary and other Members for their contributions this afternoon. We started with Angela Burns and a powerful presentation about the disquiet about recommendations 9 and 2. Lynne Neagle then—truly another excellent performance from Lynne this week again about a step change in performance required here. This is not the first critical report about antipsychotic medication. I could take some of the 'accepts in principle' if this was the very first time that we'd had a report about this very topic. It's the latest in a series of reports that have said much the same thing—that we are failing our most vulnerable people in care homes. Something needs to be done about it, and that's why we can no longer accept things in principle. We have to do something about it. I hear what the Cabinet Secretary has said about that, but I was also hearing what the older people's commissioner said. We need a change—a step change—in culture and performance, and we do need to be addressing those nurse staffing levels in our care homes, and in our hospital wards, as Lynne Neagle was saying.

Another excellent contribution as well from Rhun about the whole issue about 'accept in principle', and I do think, as many have said, not just in this debate but in other debates, that that issue needs to be tackled in terms of accepting or rejecting.

Thank you also to Caroline Jones for her contribution, and also to Julie Morgan, emphasising again the point that I made at the start: there are tools, there are checklists out there to assess what is causing what we label as challenging behaviour. We need to look at why people react with dementia sometimes in the way that they do. We need to look at the person themselves, and there are various checklist tools that enable us to do that. One excellent example is the Swansea University adverse drug reaction profile that has already been alluded to by myself and by Julie Morgan, developed by Professor Sue Jordan's team in Swansea University.

Also, I thank Suzy Davies for an excellent contribution, actually, and also for stipulating the need for urgency. Because, as I've already said, and you said it as well, we have been here before, and the time is now for action, not about another report that is critical of current performance. So, there have been previous reports, the older people's commissioner has raised concerns on several occasions, and we have a legacy report from a previous health committee, as we've alluded to, all highlighting concerns about the inappropriate use of antipsychotic medication in care homes. It should never be the first resort.

I hope that, following today's debate, the Cabinet Secretary, as he has assured us, will give further consideration to the evidence gathered, both for this report and also further enunciated in oral contributions today, and also further consider the recommendations we have made in order to deliver the long-term solutions that are needed. Because this is about transforming care. It's not just about subduing people. This is about transforming the care of people with dementia in Wales. Our most vulnerable people in Wales deserve no less. Diolch yn fawr. 

Thank you very much. The proposal is to note the committee's report. Does any Member object? No. Therefore the motion is agreed in accordance with Standing Order 12.36.

Motion agreed in accordance with Standing Order 12.36.