Good morning, and welcome to the 37th meeting of the Health, Social Care and Sport Committee in 2022. The first item on our agenda is to decide whether to take item 5 in private today. Our members agreed. Thank you colleagues, we agreed. The next item on our agenda today is further consideration of the National Care Service Scotland bill, and we have two evidence sessions. Panel 1 will focus on certain services related to social care, including mental health services and drug and alcohol services, as well as public protection, and panel 2 will focus on older people and Anne's law. I welcome the committee. We have Eleanor Jane, the director of Scottish Health Action on alcohol problems, and we have Keira McDermott, the senior policy and public affairs officer for changed mental health, and we have Susan Webster, head of policy and campaigns for MND Scotland. Welcome to you all, thank you for coming this morning. I think I've been starting off, and joining us online, I do apologise. We've got Mark Hazelwood, the chief executive for Scottish partnership for palliative care. Many apologies, Mark, I didn't forget about you but I kind of did, sorry. I just didn't read below the line. I've been asking most people in these sessions what their hopes are for the National Care Service, the things that you hope that it will address, and I guess related to that is a review maybe on some of the integration aspects that haven't been working that you hope that the National Care Service, because that's effectively why it's been done. If I can go around everyone, not every committee member will be able to go around everyone, they'll probably direct their questions, but I usually tend to do this just to get your general thoughts, so if maybe I can go to Susan first of all. Thank you very much. Our hopes for the National Care Service are MND, as you may may not know, is a rapidly progressing terminal neurological illness. People have average life expectancy of just 18 months from diagnosis and within that time people become increasingly more and more disabled, so they have a very urgent need for social care, which increases very, very rapidly. In a nutshell, what we are really looking for from social care for people with MND is a really strong workforce that has the capacity to be able to respond to that very, very quick increase of need in that very, very short space of time. People, for example, can go from needing just one carer twice a day to very, very quickly needing two care workers four times a day to potentially night time care and 24 hour care over a very, very short period of time. So we need a really strong workforce trained and able to actually meet those needs because currently people with MND aren't getting those needs met. Too many people are only getting one carer, their family are having to step up to be that second care worker. They're not getting care to the level or the times that they need and the burden of that on people with the illness and their families is absolutely incredible. We have family members who are only getting two hours sleep a night just because the intensity of the care that is needed is so overwhelming for families. So we need that really, really responsive care workforce in place and that's what we're really hoping. So at the end of the day, if that care workforce is there, people with MND can be fast tracked for the care that they need. They can get it in place as quickly as possible that anticipatory care planning can also take place because with MND we know that the way that the illness is going to go so that there's planning right from the beginning knowing that somebody is going to get much, much worse and that can all be planned for and the care can be prepared for right at the beginning. That carers can have the support that they need, that family carers can be enabled to take the breaks and the respite that are outlined in the service because currently that just isn't there, they don't have, they can't take a break if there's no care workers to step in. So they need to be enabled to take the breaks that they will be entitled to from that national care service. So these are really the key things that we're really hoping from for the service. Thank you and could I go to Eleanor? Yes, thank you very much. I think the hopes for people who are living with alcohol and drug addictions and disorders will be very different to the ones that Susan's outlined for people with MND. We know that people who are living with alcohol problems and drug use problems quite often feel, well very regularly feel stigmatised and this has a knock-on effect on services which means that the services that are provided within our alcohol and drugs partnerships locally can be quite often overlooked when compared to the other health and care services provided. We know for instance that funding was cut over the years until the last couple of years when we've seen things come back to the same funding levels that were in place six years previously albeit some additional money has now been put in place for the national mission on drugs which then brings me to another area which is that people with alcohol problems can be overlooked because of this huge emphasis on drugs in the last couple of years because of the rising number of drugs. What we've seen is the bandwidth and capacity and resources that are utilised within alcohol and drugs partnerships, the services that are provided, quite often skewed towards people with drug problems. What we'd like to see is all of this being addressed within the new national care service. For instance, this could be done by having representation of alcohol and drugs services or whatever replaces the partnerships on the local boards within the national care service. We could see better consistency in provision of services and a more joined up approach between those services that are currently commissioned by ADPs with the services that are provided by the NHS. On the other hand, that's what we'd hope for the national care service. We don't need the national care service to do this. This could be happening now and we don't want to wait for the national care service to be up and running to see this sort of change being taken forward to actually genuinely meet the needs of people with alcohol problems and drug problems. That echoes very much what we've heard in the informal sessions that we've been having with people who have got family members in need of the services that you outline. Kira. At Change for Mental Health, we know that about one in four people in Scotland will experience poor mental health in their lifetime. We support about 1,800 people a week and 80 per cent of those people reside in remote and rural Scotland. We know from our own research and countless of research done by different organisations that there is currently unequal access to services in rural areas through provision. That is something that we really do hope for a national care service that we can change so that every single person in Scotland experiencing a mental health condition can access the support and services that they require within their own community. All of our research says that people want to be supported pre-crisis within their community. If that is something that we can dress under a national care service to allow people not to have to travel, they can stay and get that service where they require it. We know that from what we have seen in the pandemic that the third sector is particularly in mental health and other areas have played a key part in providing that support and services to people. We would really like, through the national care service, for the third sector to be recognised as a key partner in service provision through funding and tendering and having that access so that people know where they can actually go. It is very similar to what has already been said, but Eleanor Stigma is also a massive thing that people with mental health are continuing to experience. The latest research by CME on the stigma study has shown that about 87 per cent of people with severe and enduring mental illness have experienced unfair treatment from a health service and that is something that is the same before self-directed support that they have seen as well. They are experiencing that stigma and not receiving that adequate social care. It is sometimes health professionals who do not necessarily have the training and they are not always equipped to do it. They do not know the mechanisms to chat to people who have severe and enduring mental illness. Those are the three key things that we are really hoping a national care service could hopefully address. That is very helpful. I will go to Mark Online. The national care service is a real opportunity to be part of improving people's experiences of living with serious illness, dying and bereavement. When I talk about palliative care, I am talking about holistic care for people living with a serious or advanced illness, holistic care, aiming to maximise their wellbeing towards the end of life, whether they have years or months or weeks or even days to go. That is always the aim. I think that you heard from Susan some of the important improvements that can come through improving social care, the real illustration of the vital role of social care in improving people's experiences. I think that palliative care is provided across our health and social care system at a huge scale. People often think of specialist services and hospices that are very important, but the bulk of palliative care is provided in primary care by GPs, district nurses, social care in the community, in care homes and in our hospitals. The national care service is a big opportunity for palliative and end life care because people approaching the end of life are probably the biggest single group in receipt of social care. There are 30,000 people living in care homes for older people.  Each week, 60,000 people receive care at home, and the majority of those are frail elderly people. I just wanted to touch on integration because, whilst the focus is on adult social care around the bill, that is not how people particularly experience services. I think that we must not lose track of the way in which social care and health services are supported and enabled to work together. I will put one last stat, which is that one in three hospital beds is being used by somebody in their last year of life. As end of life approaches, people move increasingly between settings, so you have more admissions and more discharges. Social care has an absolutely vital role in supporting people at home, avoiding admissions where they are not necessary or are wanted, and also in speeding people's return to their preferred place of care after an admission to hospital. There are real opportunities, but it is part of the picture and we must not lose sight of the need to integrate with the wider system. Mark, if I could just before I hand over to my colleagues, I want to pick up on something that has been put to us, not just in palliative care, but I am going to concentrate on that, that often the person who is receiving the palliative care is the only consideration and not the wider family. We have heard that from quite a lot of people in our informal sessions that the systems that are out there do not take into account other family circumstances, where you have quite an elderly person looking after somebody who is receiving palliative care, and they may also have their own health needs, and they are both completely separately rather than a family. Has that been your experience? I would differentiate it. I think the port for family and carers is absolutely a part of palliative care, so I don't think it's the case that those needs are disregarded. I think those needs are often not always met, just as some of the palliative care needs of the person themselves isn't met. I think an example might be the respite care needs of a carer providing 24-7 care, and yet we see eligibility criteria to give that person a break becoming more and more rigorous and being inconsistent across Scotland. It's absolutely part of palliative care, and it's absolutely part of the agenda that we need to progress to improve people's experiences. That's very helpful. I'm going to move on to questions from Paul Cain. Thank you very much, convener, and good morning to the panel. In our briefing material for this morning, the first section is titled Hopes and Fears, which is quite broad, I suppose, but I'm keen to understand the concerns that people may have around how the legislation has been structured and has come to be. Over our evidence sessions, we have heard quite a degree of significant concern about this being a framework piece of legislation that will then be to give me co-designed after the legislation has been passed. Indeed, I just want to quote something from Tannaf Muller, who is the chair of the Neurological Alliance in Scotland, who said that Scotland is being offered a new structure for care, but without blueprints, a schedule or a budget, we can't tell if it will even stand up much less that it will meet the care needs of people in Scotland and ministers need to go back to the drawing board and show us all the plans that have developed with people before they ask MSPs to legislate. I would maybe come to Susan, because I know that MND is a member of that Neurological Alliance. Would you share some of those concerns and what do you think could have been done differently? Excuse me. In the consultation that we were asked to, a number of questions and some of those were, do you think that the bill will meet its objectives? We said in our response that it was impossible to say, because the detail just isn't there. I guess that that is our fear for the legislation. I think that a national care service has so much potential, but without seeing the detail, it is impossible to say if it will improve people's lives and that is fundamentally what our charity is all about. The fear for us is that there will be structural change, but in terms of the social care that people are receiving, that might not change at all. It absolutely has to. We are supporting families at the breaking point that carers are completely distraught and in despair. They cannot cope with the lack of care that they are receiving, the lack of training that social care workers have, in terms of being able to support them properly and the lack of support for family carers. That is our fear that we cannot tell from the legislation. If things are going to improve, there is a worry that the structures will change, but in reality, what people receive on the ground might not be that different, and it really has to be. There is also a concern that so much has been included in the legislation and has potential to be included in the national care service, that it might water down the capacity to improve social care for people with MND. That is a concern for us as well. As you see yourself, we just cannot tell. I would touch on what Elinor said as well. With anilomus-like MND, with the short-life expectancy, we need improvement now, and that is very important. We need to start seeing improvement now with five years. It is a long way away, and hopefully it will deliver. However, we need to see those changes start and have confidence in those changes now. Thank you, convener. Susan, you pre-empted my next question, which is essentially if we look at the Feely review, for example, and what was agreed to in that and drew a consensus within that, given the nature of a condition like MND, would you have preferred to see more action more quickly on some of the issues that were raised in Feely, particularly around workforce, non-residential care charges, support for people and their families? Workforce is fundamental, because, as I highlighted earlier, we want to see fast-tracking for people with MND. We want to see anticipatory care planning, but that cannot happen unless you have a strong, at-capacity, trained and valued workforce. The sooner that we can see that, the better. All the things that we have hope for in the national care service can only be delivered if that workforce is there, and it is a lot more effective than it is at the moment. I might briefly come to Eleanor Jane. On broadly, some of those similar themes. Obviously, the scope has extended beyond Feely, and we have seen elements of social work being suggested that could go into the national care service. How would SHAP feel about that in terms of the strong links that are between social work and supporting those who have problematic alcohol and drug use? The way that ADPs operate now is quite unique and potentially overshadowed by other structures and areas of the health and care set up in Scotland. ADPs are overseen by health and social care partnerships, and that is the sponsoring body. Funding comes to them from the NHS, ultimately from the Scottish Government via the NHS to ADPs. They get core funding, and then they get bits of extra funding, for instance, to do with the national mission on drugs. At this point in time, the set-up is not necessarily working, but that is not to say that we think that the national care service is necessarily the answer. What we would not like to see, though, is that the situation where ADPs and the services that they commission are still in this strange grey area, is a way of putting it. If the NHS, the national care service, is set up, if this continues on the side, it will potentially just continue to be overlooked. On the other hand, we are at risk of having the national care service, all the resource and attention being focused on what we do not even know what it will look like at this point in time, but that will take so much time and resource that other areas such as ADPs will continue to be overlooked. It is a really difficult situation at this point in time to see what the right answer is. What we do not want to see is that ADPs and the service users fundamentally continue to experience stigma. We want to see that address and to think that the opportunity that the national care service affords in this regard to potentially remove some of that stigma by seeing it as part of a mainstream set-up will help to potentially address that stigma. That is one benefit, but there are so many risks inherent with that, because we have absolutely no idea what it is going to look like in reality. Do you mention resource, Eleanor Jane? Are you concerned about the resourcing of the national care service given the finance committee's concerns about the total cost and given some of the press that we have seen this week around the Scottish Government budget, which we will hear later in the week? We would certainly need clarity about what the costs are going to be. We would like to know what that will translate to in terms of the provision of alcohol and drug services. It is really important that we see transparency. We know Audit Scotland has previously reported that the financing of ADPs is totally untransparent. There is nothing published at a national level that sets out finances and where it is going within ADPs and what results it is actually delivering. At the same time, we know that the number of people with alcohol problems accessing those services has gone down fairly dramatically over recent years. If we are now looking at the national care service and that is where commissioners and the strategic view are focused, we can only expect that to continue when it comes to alcohol and drug services. That is really going to be letting more and more people down. We have moved on to questions on mental health support from Emma Harper and Emma. What you are just saying, Eleanor, about stigma is interesting. Keira, I will come to you about mental health. Where you see the national care service bill as far as supporting a wider mental health approach, I know that in the recommendations from Faley it says that there needs to be appropriate care provided for people, especially with complex needs. It is alcohol, it is mental health and there are complex issues around the care. If you have comments on whether the bill has sufficient clarity on how the mental health services and support can be provided in the overall framework, if you have any suggestions for what would need to be added? Right now, looking at the bill, we do not know what mental health services are to be included. It is lacking a definition of what community mental health is for people. If people do not know what community mental health services are, how are they to know if they are meant to go to a national care service or an NHS? Currently, we are a bit concerned with the fact that if you are popping people from the NHS into the national care service from that whole transitioning period, if someone is in patient mental health care to be put into the community, we know that there are still people not having to stay in inpatient care in higher-level security than required because there are currently not those resources for the community for them to go into. That is something in the bill that we need to look into and try to sort out. If you have not got those resources in the community for a national care service for mental health, it is not actually going to work. We also know that people who have severe and enduring mental illness are also a lot more likely to have physical health problems. They already have a lot of barriers to accessing those services. Again, if you have people in a national care service under mental health, how are they going to access NHS services? It is already an additional barrier, so there will need to be very clear pathways and a very joint approach between a national care service and NHS. We really need to look into what community health is, what services people actually want to be within a national care service. For example, during one of the original consultations, we were looking at possibly having mental health officers under a national care service, but that is a bit concerning because they are the ones who are providing the medical opinion as to whether somebody should be detained or not. They should be a bit more impartial and maybe not necessarily sitting under a national care service. Community link workers in a national care service are going to be really important in the whole—not just with mental health but talking about complex needs. Community link workers in GP practices are not just able to link people to mental health services, but with anyone with additional needs. Money advice, debt of alcohol services and everything like that—we are really going to have to ensure that community link workers play a very important role in the national care service. I am also interested in looking at—I have to find it in my papers—the part of the bill that talks about helping to support people with additional needs learning difficulty is one that is here. There is specific language about ensuring that individuals who have difficulty communicating in relation to speech and language or otherwise can receive information and express themselves in ways that best meets their individual needs. I circled the word otherwise and wrote mental health and dementia, for instance, because the bill might need further clarification on what otherwise means. That is something that I would be interested to hear some feedback about, because the language in the bill as a framework bill should allow us to move forward with a co-design process, but I am interested to hear whether there needs to be some tweaking of some of the language in the bill to widen out what that kind of language like otherwise means. No, definitely. That whole language on mental health is a key thing that is coming up in the Scottish mental health law review report that has just been published. There is this key need for people who have severe and enduring mental illness to be supported, so they are looking at this whole idea of a supporting decision maker and somebody to help. That is something that definitely needs to be looked at in relation to language in the bill. There are definitely a lot of things that need clarification in relation to the around independent advocacy. It is a language that may, instead of where we think, okay, this needs to happen around independent advocacy provision and saying that it may happen. No, we need, it must happen. I think that especially for around people of mental health and complex needs, they need to have that assurance that it is actually going to move forward for them and going to happen. I am going back to the integration of services right now. You have highlighted that there are gaps where there is no on-care, so people are held in secure facilities instead of moving on. Would you envision that this national care services bill would basically address the issues that you have highlighted so that there was a seamless approach? We have heard over the different sessions and other sessions the importance of the third sector or the independent sector in supporting people with mental health needs that do not necessarily need an acute stay in a mental health hospital. However, would you see that the national care services bill should be able to help to support a seamless transition for people? That would be one of our key hopes. The third sector has the funding and service provision to be able to help people. We are not having people stuck in inpatient services for no reason when they should be having and being able to access that support within the community. As I said earlier, all of our research shows that people want to be helped to pre-crisis in their community. There is an increase in demand for things such as social prescribing and being able to access that support. When people think of community support, they do not tend to think of severe and enduring mental illness. People automatically think that community support is not anybody that requires complex care, but there are ways that we can help people with severe and enduring mental illness in the community, such as our Stafford Centre in Broughton Street. It is just ensuring that we all have those resources. There is no point in having a national care service if we are not going to have those resources. I believe that you want to come in on that.  You said that it is still a huge problem for people with mental health issues who are trying to access services. You gave a stark statistic at the beginning. Do you think that the national care service bill is an opportunity to look at stigma and really get into that? I think that under the aspect of the bill, there is a section on training, for example. We need to give health and social care staff the training to be able to have those skills to speak in care for people who have particularly severe and enduring mental illness because we know they are facing stigma at all aspects of their life. We would love to say that, with the pandemic, yes, people are probably being a lot more open to mental health and a lot more people are definitely talking about it compared to how they used to. However, particularly for severe and enduring mental illness, people with bipolar disorder, PTSD, psychosis, it is really stark and they are still experiencing it. I would really recommend the committee if you have not read the CME report, please do read it. You will be shocked at some of those statistics. We recommend that, under the national care service, all health and social care staff involved in that service should have to undergo some form of stigma training, particularly for people with mental health. That would include alcoholism and drugs. It is not only mental health staff that should have that training, but everybody should have that training. You never know what point of contact somebody is going to access first. People can go on to a number of services, not just public sector, but also the third sector. It is important that that training is for everybody, and they are learning what happens to people with severe and enduring mental illness, what it is they are going through, the signs and the reasons they may act, how they are acting. Just so that people have an understanding—I said before that it is something for self-directed support—it is one thing that the Alliance did a report a couple of years ago. The stigma that people said they were receiving from when they were trying to say apply for self-directed support, was that there was one quote where a person said that because they had a mental illness, they were essentially being treated as if they were stupid, and they were like, no, I have a mental illness that does not make me any different from you. It is really important that that training happens. It also needs to be human rights-based. There really needs to be human rights training involved in that. Again, that is something that is picked up on in the Scottish mental health law review as well, so there are some key recommendations in there. Now we move on to talk about homelessness and drug and alcohol support. The question is led by Sandesh Galhany. I will be turning to you mainly for the questions that I have. My first question is, what impacts might be proposed for the national care service on the work of drug and alcohol partnerships? Do you think that there is sufficient clarity in the bill, given that we know that drug and alcohol services are not included in this bill? No, we do not have sufficient clarity. Like I said earlier, many of the problems that are faced by our alcohol and drug partnerships will not be addressed or do not have to be addressed by the national care service. They could be addressed now anyway. For instance, we have just been talking about stigma, but we know that structural changes do not address that type of issue. What we need is relationships, we need resource, we need people to have the time to have therapeutic relationships with the people that they are providing care and support to. All of these things do not come about because of a new structure, they come about because of resource and time and commitment. That is something that we could be looking at right now, rather than waiting for the national care service to come along and potentially have some impact on those things, but we do not need it to do those things. On the other hand, it could also put at risk those time, resource, et cetera that we need in order to be able to address properly the needs of people with alcohol and, well, I mean, I'm here talking about alcohol use problems, but obviously our evidence was joined with other organisations who have also got an interest in drugs. We were all seeing from the same hem sheet on this. It's not a matter of the national care service coming along and meeting the needs of these people. We could do that now with the setup that we've got now if we put the resource in place. Can I just pick up something that you said just there? You said put at risk. Could you explain that, please? There's a real risk that, as I said earlier, the strategic view is absorbed in what the national care service is going to mean. At this point in time, we've got framework legislation. There's going to be so much effort and resource required to flesh that out in terms of what it's going to mean in practice. Every population in Scotland is potentially going to have to be involved in shaping that, which is good from a co-production perspective, but from the perspective of the urgency of the situation that we're in now, it could serve as a potential distraction from what we could be working on now to put in place to meet the needs of people who are on the ground. We know that there are examples of great practice across Scotland. I've mentioned to the health committee in a previous evidence session the work that's done in Aberdeen with the Aberdeen integrated alcohol service, which genuinely brings together health, care and the third sector and puts the person with the alcohol problem at the centre. They're assigned an appropriate key worker who can have a really strong relationship with that person and then bring all the services that are needed to help support that person, whether it's housing, social security, justice, all of these come together and genuinely support that person at the centre. That can happen now with the structures that we've got now, so we don't need the national care service to do this. Time and resource are the two key asks from what you're saying, which I suppose most people would be wanting. When it comes to time and resource, what would be the best way of being able to put that in place for people with alcohol dependency? My follow-up question will be very much based upon what you just said about Aberdeen as a good example of it, and how do we see good examples with alcohol being rolled out across the country? On what's needed now in terms of resource and time, I think it's impossible to say because there has not been a needs assessment of alcohol use disorder and alcohol problems in Scotland for a good 10, 15 years, so we simply don't know the scale of the problem. At that point, though, when the last needs assessment was carried out, it was estimated that about one in four people who would be in need of some sort of service from an alcohol service, about one in four were receiving that kind of service. We know, though, that since then, in the last two years, we've seen the number of people dying from alcohol increase. Over the last six to ten years, we've seen the number of people with alcohol problems accessing treatment and support go down. We know that need is potentially static if not going up, but the number of people accessing support has gone down. What we need now is a proper needs assessment and then work out what services we need to put in place. That would really be a stepped approach. We'll be talking about all the different types of services from a quite low-intensity input right through to, say, high-intensity rehabilitation and all the steps in between, some of which are more generic and some of which are much more specialist. That's what we need to see in put in place. Emma, you had a very quick follow-up on something that Eleanor just said. Eleanor, you said that some work can be done now rather than waiting for a bill. Tackling stigma would be one thing. I have a meeting with Angela Constance next week to talk about education for all healthcare personnel, not just folk that work in alcohol and drugs to tackle stigma, because what Keira was saying is that it's not just for folk that work in mental health that need mental health training. My short issue is that that work will be going forward now, because I'm meeting Angela Constance next week to talk about tackling stigma. However, the bill has a section about training, so would that be welcome to then say that let's embed the training that's required that's in the bill, and that means that whoever takes the training forward is responsible to make sure that everybody gets the education that's required? Yes, I think that that would be a good opportunity. It's really important because it's something that has been talked about for a number of years. In the alcohol framework for Scotland, it's very clear that there should be a no-wrong-door approach so that wherever somebody with an alcohol problem pops up in our health and care system, they should then be signposted or supported to easily get the treatment and support that they need. That's in reality not necessarily happening. We know that stigma is one of those barriers, so training and better education and awareness around alcohol problems will be very welcome across the whole of the health and care workforce, and we're talking here from receptionists through to consultants and absolutely everybody involved in care and support. You've pointed to a number of things that should be happening on the ground. There's already regulations, there's already policy in that area, but there's an implementation gap and also there's a geographical differentiation around the country where good practice isn't being shared across the country. Is that really the opportunity for a national care service to have that, either to close that implementation gap and to actually have a consistency across the country? It's definitely an opportunity of the national care service, but I suppose we've got the national care service and then the local boards who would actually be in charge of commissioning the services, so it's how that actually works in reality, the relationship between those local areas and any sort of national standards or whatever may be taken forward. There's going to be alcohol treatment guidance, it's been long awaited, it's from the UK Government, which we then hope to filter through to services in Scotland, so if that alcohol treatment guidance, for instance, was used as a benchmark for the provision of services for people with alcohol problems in Scotland and then actually monitored and potentially standards were put in place to ensure that it was actually delivered in the same way that Matt medically assisted treatment standards have been put in place for drugs, we had something similar put in place for alcohol, then we could see quite a big difference within the structures of the national care service. I'm going to hand over to Gillian Mackay. What opportunities are there for the bill to improve support and treatment for people who experience problematic drug or alcohol use and what changes would the panel like to see to the bill to ensure that those are realised and could I go to Eleanor Jane first please? I think the changes that we need within the bill are that we need the detail, there's just not the detail right now to be able to have any meaningful discussion of what services would look like under the national care service. And like I said earlier, we don't necessarily need the national care service in order to be able to make those improvements that we need to see now. So I think that the fundamental question for the committee is I guess whether you're prepared to take at face value that what the bill proposes and then that anything that emerges in secondary legislation that comes from co-design will then actually, you'll have the opportunity to scrutinise that and to actually see what it's likely to mean in practice. And I think that that's a problem with the bill as it currently sits, is that it's very difficult for me to be able to say what it's likely to mean in practice and for you to have the opportunity to scrutinise it. Gillianne? Thanks, and further to Emma Harper's question just there about reducing stigma, are there beyond the training piece, do you see opportunities within the bill or to reduce stigma surrounding problematic drug or alcohol use within social care services? Yes, one of the reasons that when the Scottish Government consulted originally on the national care service that we came down in favour of including alcohol and drug services within anything that emerged within the national care service is very much because of the stigma that people with alcohol and drug problems experience on a daily basis, whether it's in their day-to-day lives or whether it's when it comes to accessing services. And so by keeping alcohol and drug services separate from the national care service we risk further stigmatising this group of people because they'd be the only group of people effectively who'd be kept separate. So from a sort of the principle of trying to undo some of the stigma that people experience it is important that people with alcohol and drug problems are included within national care service. That's one way of addressing stigma, but it certainly isn't the only way training is really important. But there's so much work that needs to be done within our communities at a very sort of grass roots local level to address stigma. That's great. Thanks, Candina. Thank you, Gillian. Now move on to focus on palliative care and long-term conditions, questions led by Tess White. Thank you. My questions to Mark Hazelwood. I've just got one key question mark. The SPPC have said that the principles set out in the bill don't take account of people who still need care but have no hope or expectation of a cure. In your opinion, what consequences could this have for these patients if the issue is not addressed? Thank you. You're right. In my response, we highlighted some, particularly in the section on the principles of the national care service, where the language doesn't really encompass the circumstances of people approaching the end of life and their detailed examples and suggested rewordings. The reason this isn't just about wordsmithing or semantics is that we have a bill here which is high level. It's an enabling framework. Now, there's a lot of detail to work through further down and it's really important that, as the thinking is done on the detail of the secondary legislation, that the situation and the circumstances of people approaching the end of life are very clearly signalled as the major concern of this service. I've already started by giving statistics which show that the needs of people approaching the end of life are an absolutely huge part of what this national care service is supposed to deliver. Language really does matter and I'll give you two examples of what can happen when the language, where this issue gets overlooked. The Government published alongside, in the context of the publication of the bill, four very detailed evidence papers about the demographics of the Scottish population, the demographics of people who use social care services and survey work on the experiences of people who use social care services. Nowhere in those four papers have detailed evidence, so is there any reference to how it's an end of life care and the people of needs with the circumstances. It's something that I've worked in this field now for 13 years and we are currently seeing this phase of life overlooked in policy. I think it's partly a psychological thing, it's partly because we're not a specific specialty. People have all sorts of different medical conditions that can put them at this stage of life, so it's often omitted. For that reason, it's really, really important that the principles are worded in a way that makes it clear that Powysyn End of Life Care is part of the central mission of this service. The other example of policy omission is the current cancer strategy, which I know is being reviewed and renewed. The current cancer strategy, despite the fact that 50% of people who are diagnosed with cancer will not survive beyond five years, has no reference to Powysyn End of Life Care. We absolutely have to stop that sort of omission happening in future by signalling very clearly this phase of life in the bill, in the principles, and we believe that Powysyn End of Life Care should be explicitly woven through the bill and through the secondary legislation when we come on to the charter and the arrangements around strategic commissioning at national and local level. Just one follow-up, Mark. You say it's a big omission, but you argue that people approaching the end of life are by far the biggest single group of people receiving social care. Just a comment on that would be helpful. So, if you look at how many people who are in care homes for older people in Scotland, there are 33,000 people. That's more better than in the NHS.  Probably 70% plus of those people have to mention. These are all people with palliative and end-of-life care needs. Again, if you look at people in receipt of care at home, I think 60,000 people each week providing care home support. Again, the majority of those are frail elderly people with palliative and end-of-life care. Absolutely central. Aside from the personal impact on individuals and families, which we've heard about this morning, we have to think also about the resource implications. That is an area of support where a large proportion of the health and social care budget is used to support people in this way, but it's not really done on a planned way. The responses that people receive as we've heard this morning tend to be fragmented and reactive. We hope that this is one of the things that the bill can do to support a population health approach to palliative and end-of-life care, where we look at the needs to cross the population. We look at all the resources that are within the system. Again, we have to look at the health and social care system together and we establish a locus of responsibility and accountability at local level for planning and integrating the services. I think that, crucially, understanding what the outcomes and experiences are for people in receipt of those services, I think that the committee in 2015 did an inquiry into palliative and end-of-life care. One of the reports that you commissioned was to understand how good palliative and end-of-life care was in Scotland and look at what measurement and data was available. I still can't answer that question because we haven't made sufficient progress. The health and care experience survey, for example, which informs a lot of the integration indicators, excludes people towards the end of life. It's done for, I think, well-meaning reasons and, obviously, this is a sensitive area, but there are ways in which we can systematically gather the experiences of people towards the end of life. We really should be doing that because we're spending a lot of money in this area and we need to know what's being delivered by the system. Thanks very much, convener. My question is also for Mark. I think that palliative care brings so much comfort and so much reassurance for families. It's absolutely priceless. How well are things working just now as far as keeping people at home as much as possible? You'd spoken earlier on as well about one in three hospital beds being used by someone in their last year of life about increased admissions and discharges as well. How can we look at improving that? How can the national care service help with that? I'm wondering as well as being able to step up and step down care at a local level very quickly, one of the important factors in that. Thank you. It's really important to say that quite often it's the right thing for somebody to be admitted to hospital towards the end of life. Hospital care is a really important part of Palestinian life care for people towards the end of life. We shouldn't just be aiming to avoid admissions because many of those admissions will be entirely the right thing for that person. Susan started by talking about responsiveness of social care services. Sometimes people are admitted because we don't have the right resource within the community or there's the right resource but it can't be mobilised quickly enough. I think that that's an area where we absolutely need to do better. At the moment, sometimes with workforce issues, it's just not possible to provide the level of support that somebody may need to stay at home when they want to stay at home. I've just had a bit of a rant about the lack of measurement about experiences, so I can't tell you exactly how well it's working or how well it isn't. That is a big problem. I should be able to sit here and give you some good data on people's experiences and some idea of the level of admissions that perhaps didn't need to take place and could have been avoided but I can't get you those figures. Clearly, with the financial and workforce pressures that are on the system, I don't think that it's going in the right direction at the moment. Then I'll do a quick follow-up as well, if that's okay. Just to add to what Mark was saying, we have examples of people who, effectively, people with MND who obviously have limited life expectancy being stuck in hospital and being well enough to leave but are unable to leave for no other reason than they can't have enough care at home and they're actually being prevented from leaving because the local care provider can't provide those care workers for them. That's hugely problematic and has a massive impact on not just that person but on their families because those precious months that they have with that person want to have them at home. That can be a real problem. Similarly, which hasn't been touched on, is that some people, because of the lack of care, care at home provision, some people are finding that they have an alternative but to go into a care home when they would actually much rather be at home with their families and have that potentially more intensive care at home than maybe it's the norm and that most companies are set up to provide but to have that intensity of care at home available to them could make a huge difference because they do want to spend their final months at home with their loved ones rather than being in a care home. If that is not where they do it for some people they want to be but if they do not want to be in a care home and they do not want to be stuck in hospital then a strong care at home workforce is really essential. I couldn't agree more. I think that most people will feel exactly the same Susan. I suppose that my question for both yourself and Mark is what would you like to see in the bill to support this? Is there anything specific that you would like to see in there? For myself it's what Eleanor said just in more detail because it's just not there in any way, shape or form and I do understand that you know this is a framework bill and you know the government are saying that they want co-design and co-production but I don't personally think that having more detail in a bill prevents co-design or co-production. I think the two can happen. So could you give us a couple of examples of the type of detail that you're talking about then that you'd like to see there? Well I think there could be a lot more details where would you start? I mean in terms of workforce we would like to see I think there needs to be detail around there needs to be more recognition of terminal illness as Mark said and the needs of people with terminal illness and the fact that they need these increased levels of care and it needs to be really responsive because they are a group of people that have definite needs and that isn't recognised at all so the needs of people with terminal illness are really really important. We would like to see more detail on the workforce you know that you're going to have a workforce that is paid appropriately, trained appropriately and supported and valued and I think you know this is an ambitious piece of legislation I think there's a real ambitious strategy needed to get the workforce that is essential. I could go on forever but that's then maybe what to start with. Thank you. I don't know if Mark has anything to add to that. Mark? Yes, right I do. So you know it's a framework bill so if it's still done to be a framework bill and not morph into something else we would certainly like to see changes to the principles set out in the bill so that it clearly encompasses the end of life along with other phases of life and we've suggested wording about how that could be done. I think that we would also like to see reference to pallet of end of life care and the need to take a population health approach at local level in strategic planning and commissioning and we certainly would like to see that. I think in terms of if we started to move away from thinking about what ought to be in the bill or the sort of detail that we need to see. One thing that we've not really touched on is that the bill gives powers to grant to the care boards oversight and responsibility for community health services there's really only a couple of references to that in the legislation but there's absolutely huge and you know that I understand that co-production is about putting the flesh on the bones but it will be helpful to know what skeleton we've got is that a giraffe or an elephant and how many legs has it got and I think that example of the community health services you know where is it going to sit that's a pretty fundamental question for our health and social care services. In terms of pallet of end of life care at the moment the statutory responsibility for commissioning pallet of end of life care lies with the IJBs and that is not just about the community health services but they also have responsibility for swathes of unscheduled hospital care activity. I've mentioned a couple of times the number of people in hospital who are receiving end of life care so it would be helpful I think to get some sort of steer about where those community health services are going to sit in the new world when we have the national care service and I'm obviously particularly concerned about where pallet of end of life care will sit and whether it will whether there'll be a kind of broad move across from the responsibilities of the IJB to the care board or I don't know where the government has something else envisaged but it would be helpful to get a steer about what the thinking is on that and I think what we'd be looking for within whatever structural solutions is there are things that support integrated working because people don't really care whether it's a social care service or a healthcare service they just want the right service so we want a framework where that can be delivered and where there is commissioning that recognises that for pallet of end of life care you have the NHS involved you have third sector organisations like motor neuronesies that Susan's representing, Mary Curie, MacMillan all the voluntary hospices providing huge amounts of specialist pallet of care and you also have the independent sector the main providers of care homes and care at home services so we need commissioning processes which support and enable integrated and collaborative working and which you know obviously there's references to ethical commissioning we need to make sure that it's financial sustainability for organisations such as the voluntary hospices. We move on to more discussion on co-design but also self-directed support questions from Evelyn Tweed. Some of the answers have been quite useful for questions but I'm really interested in how can we make sure in the co-design process that everyone has a say including those with maybe communication difficulties reduced agency how can we make sure that everyone has the opportunity to shape the bill and I would like to ask Mark but if anyone else would like to come in that would be great thank you. Okay so there's there are particular practical and ethical issues around involving people approaching the end of life but I think we really have to avoid paternalism here because people are often keen to tell their stories and to share their experiences so there are ways that which we can go about supporting that it will require time and resource to do it. I think the other thing that we mustn't overlook is we actually know quite a lot already through some excellent qualitative research a lot of which done at Edinburgh University done a whole series of qualitative interviews with people approaching the end of life their carers and often triangulate it with care professionals as well. So we should be feeding into the co-design process what we already know from having previously asked people with these experiences. I don't think we should always go back and start with a fresh sheet of paper when we have already been told what the answers are and very often the issue is that we haven't listened to those answers or we haven't done enough to deliver what people want so I think it's a mixture I think we need to draw on that existing research in evidence and also sensitively and supportively ask people themselves and also involved bereaved carers of people who've been on the journey with their loved ones who are often keen to share their stories the good things and the bad things so it can certainly be done. In terms of people who use alcohol and drug services I think it's really important that we don't overlook the wider communities and families around those people because that's really important to people's recovery is that everyone involved in their lives gets the support that they need so it's really important that everybody who's involved whether it's primarily or by one degree removed everyone is involved in that co-production. We do have a new I can't remember the exact title but national collaborative that's focused on developing or sort of co-producing and co-designing services or looking at issues collaboratively between people who use services and healthcare professionals and others involved in that service provision so there is something set up under Professor Alan Miller that should be able to contribute towards co-design here but I do think it's really important to involve everybody including families. Yes it was interesting that you actually highlighted people that have speech problems and that of course includes many people with MND who lose their speech as part of their illness and their dexterity in their fingers as well which could mean that they can actually not be able to use that type for example as well so it's really important that people with illnesses like MND are enabled as much as possible to contribute through the various methods lived experience panels for example. One of the things that I would say in terms of the lived experience panels is a concern that with an illness like MND the intensity of the illness not just in terms of the disability that person is experiencing but the intensity of caring for somebody with that illness which is basically as Mark touched on earlier is a 24-7 role incredibly draining for the carer so actually enabling people that have these huge caring responsibilities to contribute as well and just having that awareness that these people aren't getting left about out because they just don't have the capacity to contribute so really being quite creative in person-centred in terms of enabling people to contribute as well and working with charities like ourselves who have that contact and have already got that feedback like Mark highlighted and we have lots of input and quotes from people from work that we have done that could be very helpful and also as he highlighted using bereaved carers as well so I think it's just having that awareness that there's people who are extremely disabled and people with very intensive care demands on their lives that any interaction with people is really really flexible and open and inclusive. Yes I think particularly for people with severe and enduring mental illness it can needs to be noted that I suppose there's another way to put it them they can have good days and bad days and I have my own experience from conducting some focus groups with some of our service users in different services where one day you'll go in and they're having a great day they're really eager to participate and they want to participate but maybe when the time comes something's happened they're not necessarily in the headspace to actually contribute then and I think it's important kind of have that I suppose that sense of flexibility so say if somebody has agreed to participate and say that day they can't they are able to come back and do that. I've also noticed a lot of the kind of co-design work so far I know there's also a lot more to come it's just the beginning but anything so far on the national care service has very much been online as well which I'm hoping will kind of change with everything moving forward but a lot of people with severe and enduring mental illness if you look at researcher actually digitally exclude it as well and they require support so being able to maybe do that in person if they prefer and allowing them to have somebody to come along with them again kind of going back to the Scottish mental health law review and having that kind of supporter with somebody who is trained not to interfere I suppose with their response but it's just there to help them get their opinions across and that's also the same as I said we support a lot of people in remote and rural Scotland and I think it's really important to make sure that we're not just focusing on the central belt here or those kind of main areas that we think are rural like such as Inverness but actually going properly into those remote and rural areas of Scotland and ensuring that everyone and their experiences are really represented during this co-design process. Thank you everyone if you get anything else you want to ask or if we'll move on. I've got one more convener and again to mark first but if anybody else wants to come in please do. What can we learn from self-directed support implementation and what do you want to see this bill do differently? So to go on this that's not an area I know a huge amount about and I think that may be in part because often people approaching their life their need for social care may be for quite a short period and some of what I've heard is that some of the current processes around setting up and managing self-directed support are quite burdensome for people in terms of the administrative stuff that needs to be done and it can be quite slow and so often it is not something that people find an attractive proposition particularly when their time is short but I would hand on to others who probably have more experience in that area to be honest. We've actually found self-directed support to really work quite well for people with MND. It gives people that person's interest in this and they're able to develop their own their own care in the way that they would like. Sometimes people with MND can be put off by others you don't really want to bother with this it would be too much too much work for you but actually done well it can actually be really quite effective so we've got you know we've got we've do have examples of people you know being able to employ a family member to do nighttime care enabling the full-time carer to get asleep which has worked really well for that family. We have another example of a family in the north of Scotland who have been able to used enhanced payments through self-directed support to actually get a care worker to provide support at the right skill level that is really needed for MND who's got the training and you know what to offer. Obviously it's more difficult to recruit people to do for SDS in the north of Scotland but she was enabled to pay that little bit extra through the system and it's working incredibly well for her to have that support the support that she needs when she needs it to support her and her family so it's actually worked incredibly well for her so it can work really well it just needs people just need enabled and supported to use it properly I think and not be put off maybe potentially unnecessarily to to use it because it can really work well for people. Yes so we know from the alliances my support my choice research that the uptake for people with mental health and self-directed support is actually quite low surprisingly but from the research we see that the people that do receive it are finding that it's really improving their experience of social care. There's some examples of some service users I've spoken to from some of our services who are on self-directed support and they let the fact it allows them to get out the house. I've had carers and we also support carers of people who support someone with severe enduring mental illness and they've said how it's really helped them and they see the change in the person and how it's really improved their life however there's still a lot of barriers to access for self-directed support for people of mental health so when they're going through their options they're not actually being told the four options that they can have and they're just kind of being told oh yeah to have this one so they're not being able to essentially make an informed choice about the support they're receiving and the budgets and all of that so we really need to ensure that people with poor mental health have that same access and an equal access and informed choice to self-directed support. We also there's no data that indicates that a specific option is chosen for people of poor mental health so it'd be great if something we could have something in the bill so we can actually monitor and see the type the get gather data on what options people with poor mental health are having and also through that getting different demographic protected characteristics just so we can see the type of support that people are actually receiving through that. That seems like a good note to move on to a final theme on evaluation, monitoring and sequencing and questions led by Stephanie Callaghan. I'll go to Mark first again because he's actually mentioned a couple of times as well around having that data there to be able to make decisions going forward but I realise that you know we've got a really wide range of different experiences here, different type of people with different challenges and that lived experience is something that we've always spoken about being very very central to the national care service so across the board what should we be looking to measure and how do we measure it so I mean right across the board for different people in different situations what are those things that really matter that we should be putting the focus on thank you Mark initially yes yeah but we you know we have quite a lot of data about activity so there's been real progress in terms of linking data so we can see where people were at different parts of their journey towards the end of life. A really big gap is understanding people's experience of care and how far where they ended up kind of reflected their own wishes and preferences so you know and that's that's really what matters we have this huge complex system but we don't have us a way of asking people you know how was it for you we ask what matters to you we don't ask how was it for you particularly in this phase of life which is universal we're all going to go there so that's that's a huge gap and there are you know there are complexities in populating gap that gap but there are things that we can do in Isle and Northern Isle and England and Wales they've been doing a national audit on care at the end of life and that's a model that could be adapted and used in Scotland. There has been a piloting of a national survey of bereaved carers they act as a proxy for the person whose life has ended but report back on what that person experienced and how it matched with their preferences and so we recently were produced a report which looked at a number of things about how to improve palliative and end-of-life care and there's a whole chapter in there about how to measure and understand and learn from people's experiences. I'd be very happy to write to the committee and send you that to cover the opportunities and the detail and some of the challenges that are involved. It's definitely doable though it just needs will at national and local level and probably a bit of resource as well. When it comes to alcohol and drug treatments I think it's important to take a step back because the role of alcohol and drugs partnerships isn't purely the commissioning of services it's also a public health role and it's about prevention of alcohol and drug harms as well. This is notoriously hard to measure and is very it's taken forward in a very in very different ways in local areas but I think it's really important that we whatever is measured or evaluated as a part of the national care service it's not purely services it's thinking about trying to prevent some of those problems and harms occurring in the first place and a way to measure them would be great. I think one of the challenges that we have is that we don't know the number of people in Scotland who do have an alcohol or drug problem so well specifically an alcohol it'd be really helpful to have a starting point there and to actually assess a level of alcohol use disorder for instance that there is across Scotland and then we could actually start looking at in the longer term measuring that to see how much impact services are having and also that public health element is having as well on reducing that kind of harm and at this point in time we do have an alcohol treatment target which measures how many people are seen within a certain timeframe after being referred to an alcohol service. That's a very crude measure and doesn't really it's interpreted differently in every local areas to what it means as well so it could mean that it's assumed that that person is then starting on their treatment journey but it could be that they've basically been triaged and assessed yes they do need treatment but then put on another list to actually access that treatment so that treatment target at this point in time isn't particularly helpful but there is going to be a group set up by the Scottish Government to review that and put in place a more meaningful target around alcohol treatment which will which should be really helpful and should sit alongside as I mentioned earlier the alcohol treatment guidance which we're expecting in the course of the next few months so just to just to wind back a little bit there how do we ensure that those receiving support are actually kept central to the evaluations that we're looking at with the national performance framework is that something that would actually be helpful and be part of it in your view and there is a what's called daisy and it's drug drugs alcohol information system I think it stands for which is a newish system that's been set up within public health Scotland which means that everybody who enters an alcohol or drug service has data collected on them and so establishing whether that service is that system is a good way to then evaluate outcomes would be I think rather than reinventing the wheel to make sure that that system works to assess outcomes for people who enter services would be really really helpful but actually making sure that that works in practice data is being entered into it by all our partners across Scotland will be really helpful so I'm not sure if that's happening at this point in time okay thank you thank you for one final question from sandesh gohani and then we must break thank you um susan i'd like to ask you but i'm sure it's open for anyone else who would like to answer we've heard a lot about the co-design process now i wanted to ask what evaluation safeguards and transparency you feel we should have in primary legislation before we start the co-design process to review what is produced by the scottish government so looking for what's that so what should be included on the the bill yes yes i guess it's just what i kind of touched on earlier i mean i we would like to see mention as i highlighted i mention of how the government is going to secure the workforce that is needed on the face of the bill what's the strategy for that what's the plan for that and when i'm talking about it i'm really talking about social care fundamentally social care because that is what people with them nd are using and not experiencing what what they should we would like to see my primary legislation would like to see terminal illness as a group we would like to see mention of fast tracking we'd like to see mention of planning anticipatory care planning um now when you when you mentioned co-design are you talking about how would co-design wasn't quite sure about when you were talking about primary legislation and co-design the connection between those two and your your question so primary legislation is sort of the framework and the co-design is is where we're going to see the implementation happen yes and what the plans are so my question really was what we what we need to see on that framework bill to be able to effectively evaluate what we get after the co-design process because the bill would be passed or not passed before the co-design process yes i mean in terms of the evaluation i mean the key things that i would like to really the key things that need to be considered for evaluation are are people getting what they would are people receiving the care that they were assessed as needing so are people getting the care packages that they were assessed as needing is that being delivered for them the regularity one of the key issues for us is the regularity of care workers i was speaking to somebody just the other day there who whose mum has had 19 different care workers in two months and times of visits you know we've got people getting tucked in at six and seven o'clock at night and some people not being able to use some care workers not not being able to use equipment that somebody's been given so these are huge things they make a huge difference to the experience of people with mnd so these kind of things need to be assessed and i think they cannot the only way that they can be effectively assessed is if people with lift experience be that people that illness bereave carers have the opportunity to co-design at the beginning and to be a very very key part of the evaluation process at the end because all of these things are utterly critical in terms of assessing whether the national care service is working or not in terms of its impact on people in their day-to-day lives so we would like to see as much of that in the bill as possible we want to see as i say fast-tracking planning a a care service a care a workforce that is trained supported valued and paid appropriately so that people so that people want to work in this sector so that they're not leaving it in hordes to go and work in a supermarket that's just popped up in a local community that it's really that that's what people want to do when they leave school and it really you know we want to see that as well so as much of that detail on the bill and as i said earlier i don't think that prevents co-design and co-production i don't i don't think that amount of detail prevents co-design production we stopped the social security bill we worked very closely with mary curie to ensure that fast-tracking a fair definition of fast-tracking was included in the bill it was also supposed to be initially a sort of framework bill we worked closely with mary curie to make sure that there was a fair definition of fast-tracking on the bill and there has been loads of co-design and loads of effective co-production since that period we've been working for years with the cmo's office with the Scottish Government to to co-produce guidance and various implementation practices after that so i think that there is potential for for a lot more detail we would like to see these key things on the bill and i don't think it precludes co-design thereafter i've run out of time i want to thank our four of you for the time this morning and if there's anything that we want to follow up on maybe for there hasn't been an opportunity because that 90 minutes goes past incredibly fast we'll write to you and we certainly include what your responses are in in our report so we're going to stop for 10 minutes before our next panel comes on thank you welcome back everyone we now move now move on to our second evidence session on the national care service bill and i'm delighted to say we've got everyone in person which is a bit retreat i don't have to be looking at a screen as well as as well as your faces here i welcome allison leachon kathie russell from care homes relative scotland dr kinder mangy the head of dementia for age scotlands about dementia project henry simons the chief executive for alzheimer scotland and adams the cura the head of policy and communications for age scotland welcome to you all as it's become my own tradition in these scrutiny sessions i'm asking people what their hopes are for the national care service bill as it stands what their hopes are for the national care service as it is going to be in terms of addressing maybe some of the the unmet need that we've maybe experienced and i might be just going around everyone and as i always say in these situations i do ask everyone i do a bit of a round robin with everyone but not every member is going to have that luxury eras we would quickly run out of time so my members will be directing their questions to you but allison if i can come to you first i've been involved in my mum's care for over 10 years now from keeping her at home she was diagnosed with dementia at the age of 60 so i've been through the whole process of care at home care packages day centres and then i move into the care home and i suppose the purpose of being here today is really the importance of ann's law in the national care service bill because myself and the other core members of care home relative scotland lived with the horrors of the pandemic and being separated from our loved ones and i would just really like to make it noted that it isn't just older people in care homes there's a whole range of ages in care and we started out as five daughters and a mother region from holly from 37 to Alice who's 98 so it's just to bear that in mind there's a whole range of ages and conditions living in care homes that what we lived through for the last two and a half years should never be allowed to happen again okay thank you Kathy hi well as well as being on the involved with care home relatives group i'm also in the social covenant steering group and i think like the rest of scotland everyone that's interested in social care i was absolutely delighted when i seen the fealy report i thought it was a great report a great read i think the bill in a way doesn't live up to that because it's all about it is all about structure and it's hard to get across the emotion of what was behind fealy through the bill and there's things i have fears that there are things missing in the bill like the terrible situation facing an awful lot of self-funders in care homes at the moment there's 10 000 and they are not getting the money you know that the kind of they might get personal care allowance that covers them for about two days a month in a care home the rest of it they're having to sell their homes to pay for their care so there's an awful lot wrong with the system and the problem i have and i think part of the national covenant steering group was a recognition by fealy that we needed this nationwide drive and this nationwide support to improve care but what the bill does is it doesn't it's all about white collar jobs it doesn't it's all about planning and commissioning and all of these things and it's a structure which seems very similar to the structure we have at the moment only with a minister in charge and then a national care service board so i think what we really need is what we'd really love to see is something which really is going to really improve self-directed support doing awful lot more for people in that front line of care and doing awful lot more for to attract people into the industry and then and to really enjoy being really empathic helpful care workers. Thank you Henry. In terms of the national care service our view is that the government made dementia priority in 2007 since 2010 with three consecutive national dementia strategies there are probably at least 35 40 recommendations and commitments that we made in each of the national dementia strategies and the policies we would say have been great they've been fantastic they've been co-produced they've been really well thought through heralded as world leading but the implementation has been incredibly difficult and i think that the problem there was identified by Derrick Fielding the report in terms of that the transference from a national strategy national agreement national commitments into local delivery so we've been for 12 years trying really hard to work with government local partners to get some of the basics of the strategies put in place and we still aren't there today so i mean we don't have prevention diagnosis post diagnosis support integrated care advanced care models and pathways that have all been agreed to and tested we don't have anywhere that really is implement all of that and there's a real breakdown between the national aspirations and local delivery now there are many reasons for that we might get into that later on but that for us makes it quite appealing when someone talks about a national care service to move forward when we look at the detail of the bill i think that i would agree with some of what's been said already there are issues and difficulties and things that need to be panned out but what we would aspire to is the the challenge that we've been significantly concerned about and campaign about now for a number of years is the inequality that people who progress to advanced dementia experience within our care system and what that really means is that when someone perhaps enters a care home their needs will progress because it's a progressive brain disease and the needs will change and they invariably become healthcare needs and if you imagine any person that you've seen by a terminal condition at end of life stages that's what someone living with dementia will end up living their experience like within a care home and it's nothing but healthcare needs are required i mean they can't walk they can't feed they need to help toilet and they need to help with everything and in a sense you can't call that social care but we still charge people about £1,000 to £1,200 per week for that and we would like a definition of advanced dementia and indeed the opportunity for people to have an assessment so that their needs are paid for and covered by the NHS now that's in your opinion still a duty in the NHS and with the integration in the bill we've got to get that interface right between what is healthcare and what is social care and what's free the point of delivery and how that's been assessed so we've big aspirations for for the bill going forward on that basis can be a thank you very helpful can i go to Dr Amanjee thank you very much convener and i think we absolutely welcome the principles of the bill and the vision that has been stated and i think the commitment to co-design is absolutely welcome and long overdue and i am concerned and we as an organisation are concerned about some of the lack of detail within the bill absolutely recognise that there is a balance to be had when it comes to co-production but sometimes it is useful to have more than a very broad framework to give people a key in to what it is that they want to express and what needs to happen and what needs to change i think there's a real sense of urgency about this piece of work we're now two years since Feely took his evidence and and we are not very much further forward in terms of seeing those changes that we want to see implemented and i think in terms of the charter of rights absolutely fantastic to have that ingrained within the bill and but a lot of the teeth will be coming from the secondary legislation and i think there is a need to future proof the legislation absolutely the aspirations within that policy memorandum are what we would like to see in terms of a national care service but how do we ensure that that is what we get if it is not within the primary legislation i think there are significant gaps in implementation that haven't been addressed and i think with a very structural and process driven bill we miss the opportunity we've seen this happen time and again with the introduction of self-directed support and with integration where there has not been enough investment in time in skills in resource in bringing about a genuine culture change within the people who are implementing legislation that that doesn't work so for me it is about how we we future proof against a future change in administration a future change in in the way that things work to make sure that the visions and the aspiration the things that we don't want to see happening again are absolutely protected and locked in at this stage thank you Adam thanks i think in terms of the hopes for this actually and not just about the bill itself but for our national care services about how we can deliver the necessary reform for social care that require this in 2022 and beyond you know i think that's been quite clear before the Covid pandemic that social care was in a very difficult place in terms of its investment but mostly money buys things buys the people they have to deliver social care that we were experiencing extraordinary waits for assessment or indeed delivery of packages in social care before the pandemic and it's an organisation that Scotland has been calling for you know much more investment and much more reform as part of this system so the hope here is a national care service can deliver that that brings together a lot of the excellent care that happens across the country it also makes it far more consistent you know we've talked a lot in different committees that i've been in and also committee appearances that i've watched that you've had sorry sessions you've had here about you know the kind of the idea of a postcode lottery for care and what slightly dislike the actual phrase the point remains is that you can depending on where you live in the country your needs can be very similar to someone another part of it but you're not able to access what you need in the time that you need it or indeed as we're seeing just now and reports of care packages being downgraded a more asks on family members to take over more and more care and i think this boils back to the point about when you are assessed for needing certain levels of care and the package should reflect that and not because there's a system that is teetering on the brink and often is and it's not just about care homes but i think this is very much about care in the community and how we can make that stronger so in terms of hopes for this is that they will have isn't the necessary form there's far more investment and it's and it delivers what we all need today but also for the future it's not just about tinkering the edges but indeed something which you want to see happening and being consistent in decades to come that we can build on some of the you know free personal nursing care for the elderly in a sense in terms of something that's 20 plus years old in scotland was revolutionary at the time there's a big opportunity to kind of go much further particularly much further than anything else that's available in the UK in terms of social care putting on a much better footing with parity with the health service as we saw in the pandemic where it was often second fiddle and fundamentally in the last last bit there's this former accountability political accountability for delivery and something which we saw during the pandemic was almost the case of social care was crumbling at times packages being stopped overnight but not a single soul when the Government was able to do anything about that and we needed emergency powers to be able to do that and even then when it came to having the powers the ability to actually change anything was was almost impossible and i think this is part of it if we have long waiting times in the NHS then there's a health secretary that's accountable fundamentally as we're seeing just now obviously they can only do so much a lot of this is operational but at the same point our health secretary is also the secretary for social care and i think having that accountability means that members of the public and if you're using social care now or family members who are or whatever have someone who they can and you can hold accountable for a service which may be lacking thank you that's a very helpful start to our conversations this morning can i go to jillian mckay jillian we'll just get jillian's microphone unmuted thanks convening i just want to come to particularly adam and ask so age scotland's about dementia submission highlighted a lack of trust between service users and carers and professionals working within social care as they've been consulted on change for many years with little result how can this trust be rebuilt and will the proposed reforms in the bill contribute positively to that building of trust i think i think i think dr manju would come in some of this as well afterwards but i think to your to your last part first if you will i think there's a lot in the bill although it is pretty vague you know i think that's been the general reflection of everybody that's seen it it's obviously it's a framework bill this is part of the the nature of what it is which could could do a lot to help here and this is going back to my point about accountability and indeed having structures which are not hidden away and i think if you look at you know whether it's i gbs you know how many members of the public know what they are who comprises them the decisions that they make and how they're formed indeed how there's any kind of other input from those who use social care or understand it or even healthcare i think that's where there's a disconnect and indeed that kind of you know political government and also in this parliament accountability for that as well that they know when they go to the msp that there's some other levers that they can they can use and to your first point about kind of some of the where the trust hasn't necessarily been as good as it could be we're looking at you know how care home residents were unable to have visiting for for years it's not even months it's years and we're almost at three years now and we're still in position where care homes are doors are closed or indeed the length of time it takes to get a package in the first place you know i think that's 2018 or 2019 we looked at waiting times and i think that's 40 percent of people needing a social care package are waiting longer than national guidelines to receive it but for every week or day or however long they go without it their needs will progress and will become more become more needy in terms of what they're acquiring along with go without the harder it will be to recover or to or to sustain a good quality of life which is kind of the aspiration is all of this so i think these are things which we hope the bill can fix but again framework bill it says a lot of very top level good things in our in our view and the kind of secondary legislation will hopefully fix all of this but you know i think the proof will be in the pudding in a sense i could do a lot but it will is quite hard to tell just now the doctor might you want to come in yes please thank you convener i think in terms of the the lack of trust i think the co-design is going to be absolutely critical to that process and i think within that it's necessary to allow people to express their dissatisfaction and to be open to that and to allow that to be a strong part of the process people are very unhappy they have been let down consistently and as adan says this goes significantly longer than the pandemic this has been a systemic issue within the social care sector that it hasn't delivered for people's hopes and aspirations and it hasn't even been able to deliver very very basic needs so i think having the space to absorb and allow people to to process that anger that resentment openly i think is a very healthy approach and i think then very much the proof is going to be in in the eating and and i think it is about that culture change i think it is going to be about enabling a genuinely preventative approach to social care that takes people at the earliest possible point an upstream approach that ensures that the support that they receive is there right from the beginning for people living with dementia we find consistently it's incredibly difficult to get access to social care support and by the time they do they're very often looking at long-term care within a residential setting if they were to receive that support earlier on we very strongly believe and the evidence leads us to support that that period in long-term care can be held off that people are able to live well with dementia for longer to be able to contribute to their communities i think investment and support and community-based support and activities is a really really critical part of that people need to receive the care where they are from people who they already know and i think the model of meeting centres that we see developing across scotland where you have very small hyper localized forms of local support that are informal support providing support to carers and people living with dementia exactly where they are based on their wants and their own aspirations with a co-design approach to the way that they run and organized can be a very very positive way of achieving that and i think again it's that type of approach and model where you see co-design at every level and even in the commissioning and design of services that will help to rebuild that trust but it is going to take a long time jillian do you want to come back in or will i move on that's fine thanks convener thank you sandish thank you adam if i could turn to you having spoken to age scotland's own scotish ethnic minority old people forum it's clear to me that we haven't heard enough from people from a bain community and i'd like to know what their hopes and fears are and an example would be we spoke about tea and how important tea is to someone who's indian for example because because we drink chai not tea and that matters and it might seem like a little thing but it really does matter so maybe give me a little bit of the flavour of what what you were hearing thank you and it was good to speak to you actually our office is not that long ago about this when you came in i spoke with colleagues to members of the scotland minority old people's forum i think it was ahead of feely maybe a year or so ago to begin with asking him and ask him about social care in the most broadest sense about people's understanding of it and actually there was a wide sort of disparity in terms of people knowing what this was even the phrase in itself social care what does that mean you know it's actually one of the sort of more eye-opening moments in the last few months and i imagined was actually speaking to people with regard to the separate of this to the scotland's government's plan for a new health and social care strategy for older people when you talk about social care that that is just a bit of a blank look to begin with what do you mean by that is that care home well yes it is a care home could be all the things that can at home help and care in the community yep so that the fact encompasses so many more things and one of the things that was interesting that came out from members of the forum however was that the idea of their view was that well social care is free isn't it in every sense of it we don't have to pay anything for that that's but like the health service so it's free you don't have to sell our homes do we well actually you might have to depending on that and people quite taken aback by that and that their homes meant far more to them into their families than just kind of bricks and mortar or money or capital that could be used for social care these were safe haven safe harbours for family members when they settled in communities that were able to you know be safe and racism to have like kind of integrated communities and that have children and grandchildren who relied in that home so for them as much as anything that was in terms of the paying for it part was was really was really interesting to hear and put across in a way that hadn't actually heard before but with your regard to kind of the more cultural elements of it that this partly goes back to the availability of social care or sometimes the lack of it and partly to dr manj's point about you know kind of trusting it that you don't have options often you have a social care package or you have a carer at times and they are often very rushed they're often barely able to meet you know even 15 minutes at times if you're in your own home you know the idea of just 15 minutes because fairly inhumane if you're requiring care but to be able to do the things that you want to do or to express that if you've got a change of carer on a regular basis then will they be able to remember these are the things that you you need the things that you want because care isn't about having things done to you is it it's about having to be able to support you to live live your life and it's a very good point about trying to try actually being able to know to know about this be able to support that and having that kind of cultural training within the sector and within the service to know that know that what that person wants might look a lot different to somebody else and if we went back a couple of you know a couple of years ago to to the pandemic and looking at in terms of you know support for people who are shielding actually you look at the kind of food parcels as such as they were the often these were far from culturally appropriate they're far from being dietary appropriate either but people didn't really have any choice in this either if they were vegetarian actually some of the things that are being delivered were not vegetarian not suitable and had no other choice I think this goes back to this line about you know in service social care understanding what's right for you and what you need to be able to have to express what how you want to how you need to live live your life and that should be a big aspiration for a national care service at the very least if not right now there shouldn't have to wait for that but it is a very good point there's lots of things we haven't heard enough about from from ethnic minority older people or ethnic minorities it's not about all the people today but those who may be in the future but how they would like the care for their parents for instance to look like if they can't undertake this it's a very good point I haven't heard anywhere near enough and I don't think actually new comes to social care we hear enough from many people because for lots social care is quite abstract you know if you look at the numbers of people who might receive it it's a lot but it's also percentage of our whole population not huge amounts but when you first into your first kind of moment of experience of social care can be in a crisis that point you've had no kind of like training up until that point to understand what it's about and you're just sort of grateful to that times to get what you get at that point that's you can't really shape it thank you very much convener and good morning to the panel I wonder if I can just pick up on something you said Adam around accountability and the cabinet secretary being accountable for social care I mean would your contention be that social care is not accountable just now to in terms of local councillors and that people would have a better chance of holding the whole system to account via 129 of me and my colleagues rather than hundreds of councillors because I have to be honest and say it can be very challenging as an MSP to hold a helpful account and I often found in my 10 years as councillor I found it easier to hold social care to account so I just wonder if you would expand on that. I suppose this goes back to looking at Covid as an example that actually there wasn't very much accountability to social care and some examples and what a good example given of this was when people were being discharged from hospital to care homes and when they didn't have their own capacity and there were some health boards or some health and social care partnerships which basically skirted the courts and they found their decisions to be unlawful you know when there's discharge into care homes but there was no one held accountable for that that's an example of this it is a very good point about accountability in terms of finding ease as a councillor to go through health boards but I'm talking about accountability to the public as well and actually their understanding that what role councils have in this whether it's through IJBs or through health and social care partnerships or through where the funding comes from how things are commissioned but actually when something critical goes wrong we do have a secretary cabinet secretary for health and social care we have a government that has a social care division or department but actually the kind of reality of what they can do in terms of what the public will understand I think is limited but it is a good point about there can be a lot better accountability as a councillor but in terms of that public accountability or indeed national accountability I suppose just individual cases or individual local authority areas I think it could look very different so I think this is where we'd like to see but if we went back to the point about parity to some degree with healthcare you know I think this is important they are very much linked they are different but they're very much linked and obviously there's a lot of this focus is to be in health and social care to be in the community and not in primary care settings or indeed needing to have people to go to care homes if they don't have to and I think that's really where we're getting at here is actually when we've seen a crisis there hasn't been ability to act but also in terms of understanding social care caring enough about it really there'll be members like yourself who've been councillors that'll understand this like very well but lots of people just don't so being able to hold government to account on that well it's difficult if that's not part of the kind of your normal responsibilities yeah I mean I think my point it also was you know Mr Mrs Smith decided to make a representation to an elected member you know where does that most effectively and appropriately sit so I take your point but I do wonder about that more local focus wonder if I can convener just move on slightly to age Scotland submission in terms of what isn't on the bill in terms of feeling so you alluded to what's laid out in the financial memorandum not correlating with what's in the primary legislation are you concerned that things are being missed because it's they're not on the the primary legislation so you know things like the free personal nursing care rates removing non-residential care charging in terms of conditions of social care staff should that have been on the bill in the first place yeah that's a very good question I think part of this is about how we understand how this bill is going to work and get through the parliament you know and whether there will be commitments to use secondary legislation to do this our concern at the time was actually there are headline and flagship things in social care that are really mentioned and are really really important and actually all their political commitments you know with regard to you know removing you know non-residential care charges you know where does that sit in this you're absolutely right I think in terms of submission stands it stands and having those kind of commitments built into that one of the things however I think where we can all maybe get tripped up on is you know the aspiration behind what this the primary part is going to do against the secondary part what's going to be co-designed and what's going to happen there which we don't really have a lot of sight of and maybe goes back to dr manjie's point there about more framework for the guard to what's being co-designed so there's something more to kind of to kind of work around but yeah I think there are some things with the guard to to money which could be better indicated in primary it's on in the sort of the framework part of the of the bill yeah I wonder just on that I can just briefly pivot to Kathy Russell on that question just because you mentioned feeling Kathy just do you feel there are things that could be done now that actually would make a difference outwith this legislation well I think obviously on care home charging I think there's a lot could be done it would be it would be good if for a kickoff people who are self-funding didn't have to subsidise underfunding through the care home contract because that is definitely happening and care homes are telling people that your bills are going up because we're not getting enough on the care home contract to cover it and I think that is really financial exploitation by the state on some of the most vulnerable people in this country and it's appalling but what in terms of sorry the other bit of your question there was on sorry it was just whether you felt that things could be done right now in terms of the feeling agenda yeah I mean what worries me to some extent is that your hearing figures mentioned like half a billion pounds for the new structure or you know other audit committees and so on thinking this could go to over a billion pounds and not one extra hour of care for that I mean none of that is getting spent in the front line so I think we would really like to see an awful lot more done to fund better in self-directed support because that's never really being delivered on I mean when my mum was assessed and told we needed a care home for her I mean I wasn't told that there was such a thing as self-directed support I didn't know anything about it until I got involved in this so that's not really being rolled out to any great extent and also just the whole the workforce itself I mean you heard a guy on to this committee a few weeks ago my doctor from down south saying that you know a dog walker gets 15 pounds an hour and a care worker gets a tenor you know so mean we're never going to improve care with conditions we've got to see it as a profession because I have seen you know when my mum was in a care home some of the most wonderful workers you know people who really have great insight who make people feel really good about themselves and so there's so much can be done on workforce I know things are happening with that I know that it's not been totally neglected there are things happening on workforce planning and I think it's seeing the money it all comes back to resources I mean we need to know that there is a way to improve the funding for social care or nothing will improve and I also haven't been through major local government organisations myself do fear that I mean sometimes you know tonight you know you won't make an omlet without breaking eggs but I do know that that degree of reorganisation you will lose an awful lot of experience an awful lot of people will be sitting there hoping that this is their chance to be allowed you know you will lose a lot of experience out of the management side and so I think it can be very very disruptive I'm not I know from the people who were involved in feeling that there is huge support for an NCS particularly among disabled the kind of disability rights movement are very very much in favour of it because I think there is a feeling that you know in a government you're making money available and it doesn't seem to deliver on the front line and you can't really always tell why because the whole thing is so confused so I can understand I totally get what's driving this but I do have huge fears about how it will work in practice Can I bring in a quick report before I come back to you? Emma, you've got a quick question based on I think what you said. Thank you convener just to pick up Cathy what you said about self-directed support that it's not really working and I'm aware of some local authorities where it's working really really well and even within a particular local authority where the perception of my office staff that it isn't working well there's some folk really getting good self-directed support and the minister Kevin Stewart visited Dumfries in the summer recess to hear directly from folk the good and bad about self-directed support so I'm interested to know whether you think that the national care service will help raise awareness of self-directed support and what it can do and what it can achieve because there are folk that are really getting good packages and I think you're right about how some folk never heard of it but other folk really know how to access self-directed support I know exactly what you mean Emma in fact was at the gym this week and happened to chat into someone on the way out I mean she was talking about her sister's package from capability Scotland which I think was in Renfrew her face lit up at how wonderful it was you know the care that she was getting and that was she didn't she has learning disabilities her sister she wouldn't be able to manage all that herself but it is managed for them but very much in very deep conversations about how her week would be shaped and you know which bits family we're doing and which bits carers we're doing you know it was really and I think the other good thing I mean we've all seen a lot of Marion and Laura's example from the Fili report where someone went from having about 40 different carers a week to having a very small care team who really understood her needs and you know it kept her much much healthier so I think self-directed support can be great but it's very expensive as well and I also think that for people who are approaching end of life and I was very interested to hear is it Mark Hazelwood this morning talking about this you know likes of I think a young person a younger person a person with disabilities self-directed support is a fantastic thing but I think when people are approaching that very end of life stage where previously they would have been looked after in geriatric hospitals and so on and I think that very often care homes can provide a really really excellent service I don't think it's necessarily I do have anxieties about the extent to which that's that area of services being privatised because I think that you know the over privatisation of elderly care is has not been great and I think it's a warning for all for the rest of social care as well that you need a mixed economy you can't you can't put all your eggs in that basket very quickly because we okay one of the care home providers that we spoke to in the freeze gym gathering thought that self-directed support should be available in care homes is that something that anybody's had any discussion about oh no because I think the first question that you're asked at a social care assessment nowadays is do you own your house and if you own your house you're on your own it's well go and get yourself organised you know there's not you know I mean I've heard I mean I think when Scottish care were here as well they said that self-directed support should be available in care homes but right now I would settle for people in care homes being able to get funding at all let alone self-directed support okay thanks thanks to Paul um to talk about co-design and care boards thank you very much can be there I wonder if I can just pick up in terms of co-design to what extent have people felt involved in co-design thus far and you know should there have been more co-design before we got to this bill being drafted and then I suppose what would you like to see co-design look like going forward um so wonder if allison might want to comment from the family side and then I can come to the other side of the table thanks I think in terms of the whole bill um the six of us sit on very I think there's 12 different committees that we sit on and Kathy does take the lead on the national care service bill um I think we've all been able to fit feed into Kathy's representation on those bills that um it's quite hard to think ahead of a national care service bill um I welcome it personally because something needs to be done about social care um in general but it's quite hard to see that when you see how broken it is just now um you know Kathy touched on the workforce um when the pandemic hit and people lost their jobs and pubs in restaurants it was like well why don't you become a carer those people could go in and look after my mum the day after with very very little training and these are the most vulnerable people in society um also the postcode lottery that is something that has come up time and time again through our memberships um the no accountability um we had public health making decisions we had providers making decisions we had managers making decisions we had care inspectors we had social work we had staff everybody could make a decision about our loved ones other than us and when you have all these laws and legislations in place that were completely ignored um I spoke to Henry earlier I actually worked for Alzheimer's Scotland when my mum was still at home um and I was really enthused by the dementia strategies Scotland was world leading and what they were aiming to do for people with dementia and all that was done away with all that was scrapped it was overruled by everything to do with um Covid um so I suppose we've all got the six of us all have different experiences because we've got different conditions different age groups um and I think we do feel that we've had good representation on the different committees that we sit in but it does mainly sit with Kathy so she would be the best to represent sure I wonder then Kathy do you feel that um there should have been more co-design before getting to the bill and what kind of co-design would you like to see in terms of the secondary I've actually found it I think the co-design I think people are really sincere about co-design um you know in the scott in the social covenants reading group the staff who are working at government level on that um and there is a real um determination to to make that work I think there's a tendency for co-design to be around specific products you know like we'll we'll go and we'll um we'll have a discussion about the what's in the um the complaints procedure or what's in the um charter and I notice that the charter that actually says in the bill cannot confer any new rights and responsibilities you know which I think is a disappointment because a lot of people would have wanted some some rights to be quite specific in there um so I think you know particularly on the right to to see your loved ones I mean that people who didn't get to see their own husband and wife for a year um and you know certain rights you know so I think it's I do worry that it will be around these quite narrow things and it won't really be about I think they really what what I found is that everything that last few years has taught me is that social care is about relationships it's about not having 40 people coming a week to your house it's about having a handful of people that you can really really trust and um and it's about it's all about these things that are really important and in a way it's it's quite hard to um what will make the real difference in social care and there are brilliant examples of really good social care out there at the moment is that um those really meaningful conversations about how can we make your life um is you know better um if those really meaningful conversations take place that's the kit that's the way the co-design um maybe you need co-design to get to that stage but I think that's where the real co-design takes place when people are working out their own package or working out their own um what's right for them you know whether they're in a care home or in their own home or some community setting thanks I want everyone to come to Henry just in the same points thank you so I think that in terms of co-design that we have had many organisations in civic society that have been expert in engaging people in terms of co-design for many many years and I think it's welcome that there's an opportunity now for that to be sort of perhaps perceived much more strongly in the policy arena but what I would say in terms of your question is that we've been framed into a discussion about structure and bills about co-design I would much more prefer to talk about but look at our long-term care estate for example who designed that that was designed in the early 1990s primarily through entrepreneurial investment and it was never commissioned it certainly wasn't designed by people who might use it and it certainly wasn't designed going forward we would very much like a conversation about alternative models we'd like a conversation about models that are Covid safe we'd like a conversation about models that are actually going to suit localities in rural areas and communities that's the type of co-design I would very much like to engage in and I don't I don't see that and I will we can do something about that other on accord we can engage people we can engage the public in these discussions but quite frankly I think that the the if we move forward assuming that the estate that we've got all the way through is what we have to work with and we don't become more ambitious about revolutionising that and transforming it then I think we've missed a huge opportunity for co-design absolutely agree with that and you know what we're finding is I was speaking to one commissioner recently who was saying that a new care home was being built in his area he didn't need another care home but it was going to be 80 beds and you know so if you allow the private sector to drive what style of care home you get and where it is and that's and they will base that on where are the biggest houses to sell that might give them the biggest bang for their buck then you're not going to get a care service that reflects what people need you know you're getting a care service that will make the most money for you know for the big corporates could I add to that me I think that our care home staff have done a tremendous job tracking through the pandemic these circumstances however I don't think that should deter us from having the debate about what the future does look like and certainly from our perspective not only should the design process be about the long-term care we should be looking at how are we educating people in terms of prevention you know we're really keen there's a 30 40 percent of dimensions preventable there will be new treatments coming down the line in terms of disease modifying drugs so we're hopeful for a significant revolution in terms of how we approach from the point of prevention to diagnosis to integrate advanced care and at present I think that it's that's all down the line everything's down the line we need to be talking about that now and engaging the public in these discussions at the present time because I think that the public just simply do not understand you know what care looks like how much it costs and what they're facing going forward thank you for that that was very helpful I wonder if I can move on just to talk about care boards and the whole concept of care boards and do you feel that there has there's still too little detail around what a care board will do and you know what its composition will be including who will have the voting rights within that care board I wonder if I can come to Dr Mancher first I think we were disappointed that the membership of care boards didn't appear in detail in the legislation we really welcomed the emphasis on lived experience that was given within feely for the membership of care boards and I think that that is a significant opportunity we did some work around about it a year ago talking to people living with dementia talking to care as a people living with dementia and interviewed somebody who was currently serving as a member of a care board as a unpaid carer rep to explore what they would need to get out of that experience to make it meaningful and how to make it as easy as possible because I think it is a big ask of somebody to to serve on a board such as that and I think if we put that pressure on just one individual it becomes an even bigger ask so what I would like to see and what our members would like to see is more of an emphasis on maybe pooled approaches so that you have a number of people who are with lived experience that can attend to the board I think as an absolute baseline there needs to be voting rights and they should there should be full participation because if you're going to sit on a body then you need to have the opportunity to make those key decisions and I think that expertise needs to be recognised I think that's about parity in terms of recognizing that expertise and I think we need to look at what training and support is given to people and one of the wonderful suggestions that was made by one of our members was that care board members need to be trained in how to support and listen to people with lived experience at the moment the training is all in the other direction the carers and people with lived experience are trained on how to say it serve on a care board and often it can be quite a frustrating experience when their expertise is not recognized is not welcomed is not acknowledged I think there is a huge role for the third sector as well and I mean that that has been a consistent recommendation since integrated joint boards were first created that the third sector needs to have have a role there and I think that needs to look at not just the large third sector organizations but some of the very small grassroots voluntary organizations who could also play a significant role in supporting people with lived experience to access care boards and to be able to fulfill their duties and represent the views of people with lived experience within that local area on this still on this theme from Emma and then I'll go to Gillian Mackay Emma thanks just a quick question I suppose and it could be for dr mangy or others as you think about it as care boards are established what do you think is going to happen with integration joint boards and health and social care partnerships and and I guess the movement of people the flow how do you think that will be perceived or and how do you think that would be implemented then in practice I'm not sure that that's something I feel that I have sufficient expertise to be able to comment on at this point I'm happy to defer to another member of the panel so I think that we've got substantial historical evidence and Kathy mentioned some of it earlier about mass integration projects and we've also seen you know the temporary IJBs to come together what we find and I think what you'll find in most circumstances there is that a lot of mergers are very unsuccessful because the cultures don't merge together too well and I think that what we've got at the present time is a real split about whether or not a national care service is a good or a bad thing now I think that we probably have to take time to win people over to the fact that we're going to go down this route you know we should be including the staff and the people that are involved in this in that co-production too we shouldn't it won't work if we try and just impose it we have to make sure that people want to believe in it feel valued as part of it and engage within it and that's just those that you're talking about perhaps that come under the one banner of a new service and all the two pay issues and stuff that will have to be dealt with the others there's significant issues and significant challenges there and many of us will have had experience of dealing with these matters but I think in terms of the social care workforce what I would refer you to is I was a member of Fair Work convention and chaired a social care inquiry for two years we produced a very detailed research report that made several recommendations about the social care workforce prior to the pandemic it was published in 2019 many of the things that we were arguing for at that point such as having a voice for this workforce I mean this is a workforce of 200,000 people mainly women who don't have any collective voice there's no national negotiating position for them at all government have tried to support them through small increases in living wage but what you need is a a stabilised set of terms of conditions and contracts that people who are in that environment will all be offered and it can't be left to the vagaries of different organisations to try and get a competitive edge over that so I think you've got the social care workforce that need that depth of real support engagement and absolute security I mean it really is great you can't imagine how insecure it is for someone coming in and a job working in smaller four hour contracts or zero hour contracts but ain't not working six hours per week I mean all of these things were highlighted in that research and Derek Feely spent a lot of time with us at the convention looking at that and made some recommendations on that but that needs to be driven forward to another brother and later I think alongside that big merger issue there requires a lot of work okay just another week about establishment of the care boards and the as part of this bill looks at training and the I suppose the recognition of the exemplary skills that are required in order to provide care at home or care in a care home and you know and I think there's career pathways that need to be thought about established progress because obviously we do need to value the people that feel less valued at the moment who are providing care so do you think the bill actually is able to I suppose create this formalised recognition of the skills that are required to be a carer yeah man I think we've already got some good sort of criteria in terms of social services council registration so what I think needs to happen is that we need a national set of sort of terms and conditions a national set of agreements that become part of the ethical commission and processes that we've talked about now one of the one of the biggest challenges that organisations face just now in the caring sector is they're signed up to non-committal framework agreements and what that means is that they don't know how many hours worth of care they're going to be asked to provide and if you if you trace that back that's where lots of the potential difficulties with staff recruitment retention your management infrastructure how many staff are you going to know you're going to you just don't know that so people then hold that back until they're asked for that provision now I would say that we should have set terms and conditions part of any tendered agreement part of any contract part of any part of this new service that everyone knows how much the supervisors will be getting paid how many supervisors you require what your training days will be what your sort of like support structures will be and what your expectations would be I think it's a great opportunity to fix all this because that's very broken just now okay thanks go to Gillian Mackay then Carol Mawkin Gillian thanks convener just off the of the back of the theme on on co-design I was wondering if I could ask Kathy about what her views are on how we ensure that the process of co-design going forward is is ethical and sustainable for people to be able to participate in we're