 Good morning and welcome to the 18th meeting in 2015 of the Health and Sport Committee. We'll ask everyone in the room at this point, as you usually do, to switch off mobile phones as they can often interfere with the sound system, but it would also actually to note that there are obviously commiting members in classrooms using mobile devices instead of hard copies of their papers. I have received an apology this morning from the net millon who unfortunately can not be with us and if we move now to our first item on the agenda i ni i gael ei ddweud o hollwch chi i gael ei hunain hwnnw i'r argynnu i'r oedlach yn gwahodd perffinadau. Felly, mae'n dweud i gael ei wneud i'r eich cyfle maen nhw. Rhaid i chi'n dweud â'r dyfodol yw ddweud o'r ddymol ar gael ei ddweud? Rhaid i chi i'n dweud? Ieithi chi eithio i'r ddechrau strategiogol a'r llein a'r llein Following the professional advice of the palative care from the care inspector and the health improvement service this morning, was that right? Ja'r chi. Ja'r chi. Jackie McCree Head of Quality Care, Healthcare Improvement Scotland, I was ahead of myself there so I can welcome, Niki McLean, director of Scottish public services on Musman, welcomed to you all this morning. We will go directly if that's okay to questions The next question is from Dennis Robinson. orsandd it better. One of the things that perhaps I would like to start off with you is, do we need to have a discussion about death and dying much earlier, so do families and patients need to have this discussion with their GPs at a much earlier stage than we currently do, and would that lead to an improvement of palliative care? Since it's on an improvement, why don't we start with HIS, because we're talking about improvement as well? The answer to that from this and previous other work that I've done is yes, it would be helpful for patients to have a discussion earlier. It's not something to your current inspection programmes that we're looking at specifically, so in terms of evidence from inspection from our inspection programme of older people in acute hospitals, for example, we touch on palliative end-of-life care through the different themes that we look at through our strategic inspections of adult services that we do with the care inspector. Again, we are looking at services in the wider sense. Some of the people and individuals that we speak with will be at end-of-life, but some won't be. In terms of my ability to respond to the specific question and evidence, I'm not sure that we have enough to support that from our current work. One of the important things is absolutely about having those conversations at the point where people are able to make informed decisions and choices and have capacity to do so. One of the encouraging signs that we've seen in care homes for older people in recent years is an increase in the number of people who, at the point at which they have died, have had an anticipatory clear plan where some of these issues have been discussed and with relatives with themselves. We've seen a rise actually from 38% in 2012 to 62% last year, so a relatively significant increase at that point. There may be very good reasons why someone dies in a care home who doesn't have an anticipatory clear plan, but the rising number of people who do shows that more of these discussions are taking place and we very much welcome that. That's in the care homes setting. What is the figure overall in terms of? That's in care homes for older people. We also collect figures in care homes for adults. The figures are slightly lower there as one would expect, but I can certainly provide those if that would be of interest to the committee. That would be useful. I think that a lot of the experiences that people talk about at the end of life are sometimes in the acute sector, which causes some reputational damage to the service, indeed, from my case work and I think others. It would be useful to have those a lot off, I guess, Dennis. I'm just wondering who should instigate these discussions in terms of if we've got people with long-term conditions and we anticipate that, especially if we identify that it's a very deteriorative condition, should we be having the anticipatory care plans set up? If so, by whom? Who instigates Rami again? Absolutely. At the point where somebody comes into a residential care service, we would expect those discussions to take place. I'll maybe ask Elaine in a moment to say a few words about what those discussions might be and what they might look like. One of the important things that we need to see is that there is a joining up of those discussions both in the health sector and in the social care sector, and that's something we've seen some examples of encouraging practising recently, but we would like to see further development there. As we progress down the route of integration, we suspect that the structures are there to enable that to happen, but I don't know if Elaine would want to say something about the nature of those conversations and the admission to a care room. When looking at anticipatory care planning, I think that the staff and the services that we regulate should be engaged in some of the anticipatory care planning because they know the residents and the people that live in the care-at-home services. What we would expect is that we're looking for what does a person actually want? Where do they want to be looked after? Where do they want to die? Did they have any resuscitation wishes? Has their family been involved? So that services provide good end-of-life care, we need to have these conversations and they need to be had early on when somebody is actually diagnosed with a life-limiting illness. That's within the residential settings, but how do we engage with a wider community because there's a lot more people in the community who are elderly and who perhaps have terminal conditions, certainly long-term conditions with deteriorating the aspect to them. So how do we engage in the community at that stage? It's difficult, I think, I suppose, in relation to your question about who should instigate an anticipatory care plan. I'm not sure that it's one professional or one professional group. People touch services at different points during their illness or during their time with healthcare. So I suppose it's about skilling up a range of staff in healthcare professionals to actually understand when is the most appropriate time to have that conversation because, again, different people at different times in their illness will be ready or not to plan for the future and have those conversations. Certainly, through the work around our 200,000 days, giving back 200,000 days to people from acute care, there is improvement work beginning to look at how we actually build capacity for improvement and work with service providers to improve work across anticipatory care planning. You've got supplementary, Richard? Yes, it's on. It's the point that Casha was raising about making sure that all the sectors are on board. In preparation for this meeting, I've been talking to a number of colleagues and the recording of DNA CPR is not being transmitted as far as I can tell on to the emergency care summary. Now, I know that terminal care is supposed to be up there as a flag on EMC or CIS, but is it recorded when there's a living will or an anticipatory care plan or an advanced statement or a DNA CPR, which are the four different mechanisms in existence for actually recording your wishes as to how you wish to be treated? So, are we actually recording that on the emergency care plan so that when someone contacts a system, it's actually recorded and is up there? In the case of the anticipated care plans in care homes, which I'm welcome, in fact, that's 52% and rising, but is that then on the emergency care? It should be on the emergency care summary, the GPs have an obligation to complete an anticipatory care plan. Well, my problem is that the DNA CPR is not always recorded on that because it's actually usually set up within the hospital and the hospitals are not actually putting it on to the emergency care plan. So there's a problem. And I've had specific examples of individuals just being having a really rotten death because, you know, they were then resuscitated in the community because the previous agreement had not been recorded before they went back to their care home. That's very concerning to hear that anyone would have a death of that nature. I think one of the things we've identified from our joint inspections with Healthcare Improvement Scotland when we look at what happens across the community planning partnership in terms of services for adults is that there needs to be improvements in the way information is shared between the health sector and the social care sector. We've found some examples of good practice, but in some of our inspections today to those joint inspections, we've made some recommendations about improving that sharing of practice between the two sectors. In terms of the guidelines, just following on some of that, and I've taken an interest over a period of time of the inspection of older people's care in our hospitals in it. It doesn't read well over the period of those 40 inspections where guidelines are clear about screening for cognitive impairment, nutrition and others. In fact, we're still finding 40 inspections on that guidelines are not being applied and there's failures in that system. What would give us confidence, therefore, to go back to Dennis Robertson's question that those other concerns, those wider concerns about the end of life, people's wishes, which have not been followed, unfortunately, and identified in some of those inspections in the acute sector? What would give us confidence that guidelines for end of life and palliative care would result in that end of life palliative care that we would expect and would guarantee to people? Why would we accept a guidelines approach to that and not a right to end of life palliative care? In terms of the care sector, the national care standards play an important role and actually the review of the national care standards I think will play an even more important role. If those standards, that there are obviously standards at the moment within the national care standards around end of life, one of the things that we expect to see in the new national care standards is a more human rights based approach based around wellbeing and that will allow us as inspectors and regulators to ensure that the quality of care is being given is responsive and person centred and meets the needs of the individual and that is very much the way that care is moving. Certainly in the care home sector for care homes for older people, we see that overall performance in terms of the quality of care is good so most services are considered to be good or very good but there remain a small number of services at any one time who aren't providing sufficiently good care across the piece in terms of the quality of care and targeting our scrutiny and our improvement work on those is very important. So one of the things that we do is try to build the capacity amongst the workforce and assist in that. I don't know if maybe Elaine wants to say something about some of the work she does around that but ensuring that there is good knowledge and confident staff within care services is absolutely critical to that. But to me your own figures 45% of the 1000 and odd patients that we reviewed did not receive screening for cognitive impairment. The guidelines are in place, the rules are there, when you inspected that nearly half of the people didn't get that screening at that level. So how do we get to a stage where we can be confident that the wider issues of end of life and palliative care will be delivered in that setting when we're currently failing to almost half of those people as the guidelines are defined. How do we have confidence on the committee that that's not an area we should look at? Well we need to target our improvement work where it's necessary through the first stages to identify where there are failings and then to put in place the right supports be that support from the care inspectorate or actually support from the local authority and the health board working in partnership under the new integrated arrangements so that the support is put in place where that's required. Very quick fact on what you've just said convener, the latest study conducted in Scotland on patients admitted with a prior diagnosis of dementia not requiring cognitive assessment because they have been diagnosed as dementia 50% did not have that diagnosis recorded in the acute hospital. So it's even worse than what the convener was saying, it's a disgrace. It's a total disgrace that people with existing dementia are not actually having that recorded on their notes in the hospital and therefore how can we expect care to be good for people with dementia in hospital when that is the case. That's in the British Journal of Psychiatry and it was published last year and it was a Scottish study. Jackie wants to respond to that. From our inspections of older people's care in our acute hospitals we certainly know that there are issues particularly actually around the recording and documentation of information and we're also aware of the impact that that then can subsequently have on staffs ability to deliver care consistently. I think that in answer to the original question about how can we be assured that a guideline approach is the right one, I'm not sure that a guideline approach or any approach in isolation would deliver the assurance that would be required. So certainly around our older people in acute hospitals programme notwithstanding the 40 inspections that have not really to date shown significant improvement but we need to remember that in the first sort of tranche of inspections they were baseline inspections on which boards were expected to build. Over the last year we've been increasingly working in a far more integrated way with our evidence colleagues around developing standards and with improvement colleagues to make sure that the work that we're doing around inspection is actually aligned to the work that is happening with our improvement colleagues so that we're building on inspection findings. We're targeting where support is needed and in fact now we are seeing far more frequently boards are approaching us, they're asking where is doing this well, they're asking us to come out both our inspectors and our improvement colleagues on post inspection findings to run improvement events locally within their boards. For example Lanarkshire recently has done one, Greater Glasgow and Clyde also and Fife and I know others are planning to so that's really staff looking at their inspection findings and working together with us to make improvements across the piece. Yes it's frustrating that that's not happening immediately but it's a complex area. Dennis, did you wish you could come out of the way? I'm really struggling with a wee bit and can I say at the outset, I accept that I believe that the majority of people coming towards end of life do have appropriate supports whether it be GP family and obviously the appropriate palliative care and there are some examples that don't but I believe in the majority of cases that we do actually have that respect for people at end of life and the appropriate services are generally there. What I'm struggling with is that we're looking at, we would like to, we expect of, it's very nice but we would not be better to have a clear pathway of guidelines and saying this is what we should be achieving, this is a baseline, this is the pathway through the integration of services so everybody knows exactly what is expected of them and at the moment I'm hearing that we need to upskill, there's patches of good, there's patches of bad, there's improvement, that's fine but do we have timelines? Do we have a pathway? Do we have the appropriate people giving that training? I'm not really hearing that, Rami. The Scottish Government is obviously working currently on a framework around palliative care and Elaine sits on the National Advisory Group around that and we hope that that will provide some framework for that action but I think when you're looking at improvement action in that sense particularly in care services, many of which are not run by the local authority or the health board but are private companies or voluntary organisations, the improvement has to be really targeted and localised so while a national framework is very welcoming and important actually the improvement has to happen once you walk through the doors of the building in a sense so building capacity with the providers themselves to make those improvements is really important. Anyone else? In terms of the national framework, it is important I suppose that service says yes you know there is a framework, there is a standard to which we all should be working to, we're developing the older people in acute hospitals standards are being revised, there's not going to be a separate standard on palliative and end of life care but instead it's ready throughout the standard so for example when we're talking about dignity and respect we're referring specifically now in the draft standards to the conversations that we were talking about earlier and providing the privacy for these conversations to happen. Your local delivery plan, the driving improvement and quality of healthcare local delivery plan 2015-2016 doesn't mention end of life or palliative care at all and it's 32 pages, you don't see that as something that needs to have a... It's not drawn out specifically but when you look at the pieces of work that we're doing across older people in acute hospitals so with the revised methodology there is an outcome for end of life and palliative care within that. We've not focused directly on that to date as part of our revised inspection process because we've continued to focus on the themes such as food, food and nutrition, tissue viability, falls, cognitive impairment and again that's partly allowing boards to develop on the work previously undertaken and currently undertaken around improvement in those areas so that we can inspect and actually reflect the improvement that's now starting to happen. That's not to say that we don't look at end of life care obviously when we're out in clinical areas, the large percentage of people in our hospitals are older, we're cutting across surgical, medical, front door services so within that we will look at patients who happen to be older and at the end of their life but we're not drawn out as a specific theme at the moment. What about our children, young people, adults who again, some have terminal illnesses and looking towards end of life and appropriate end of life care. I mean yeah I can understand the majority of people are in the older sector but surely there has to be that all-encompassing aspect of the palliative care to ensure that and especially I would think our children are young people have that most appropriate care at that very traumatic time in a family's life. Yeah so currently we do inspect hospices as you know through our independent healthcare inspection programme. Overall the standard of care within our hospice sector is very good and excellent. What we're not currently looking at though is specifically the pathways of care for children or others across our inspection programme so that's perhaps something that jointly with the care inspector that we do inspect children's services, care inspector or the lead agency so Rami may wish to follow up on that. Absolutely I mean we both inspect the pathway of support for children in any community planning partnership area but we also regulate a small number of very specialist services who provide palliative care and a care at home basis to children provided by CHAS and the quality of those services that we inspect is very high actually. In terms of the joint inspections that Jackie was referring to then we certainly expect to see and in many ways see better sharing of information across agencies amongst children is more established mechanisms around sharing information and working together amongst children's services and the quality of that joint working that we find is high. Am I happy to get back to the committee with any specific scrutiny evidence we have around palliative care from those inspections? Nicky I'm conscious that you haven't had an opportunity to come in and I think you do want to come in at some point. It might be interesting to know what role you may play from the Ombudsman's office in terms of this partnership that are discussing all of these issues given your experience Nicky? Nicky I think just to pick up on a couple of points that have been made our experience as I think we noted in our submission is in relation to end of life care for care of the elderly those are the complaints that we tend to see and they do pick up on all of the issues that we've heard about here so they do pick up on the issue of correctly assessing cognitive impairment and how that ties in with treatment and issues like trips and falls and I think that unfortunately the cases that we see are the cases where there haven't been anticipatory care plans and there haven't been discussions with family members so we'll see cases where there are and actually there's conflict between what the patient would like to happen and what the family member would like to happen because those conversations haven't happened so I wouldn't we wouldn't be able to I think offer very much advice and guidance on the benefits of anticipatory care plans because we tend to see the cases where they aren't in place and therefore we see the consequences of those. Nicky There's a number of people who want to come in and I'll certainly get you in but Bob's been waiting patiently for you well now and I think I've got Rhoda who wants in and Richard on another theme. Nicky I think it's worth also putting on the record from the committee that we were determined to do an in depth enquiry and palliative care irrespective of the outcome of Patrick Harvey's a city suicide bill last week irrespective of how this stands on its own right as the right thing to do irrespective of that and I just kind of want to put that on the record and maybe also put on the record that we've heard some stories during the the examination of evidence on that of some exceptional palliative care work in Scotland and actually internationally were not a bad place but it's still not anywhere near good enough and I know members of this committee has touched all our lives on a personal basis not just in our constituency caseload. So how do we drive that continuous improvement I suppose would be my question and get into the specifics of that I see health improvement Scotland are developing indicators for palliative and end of life care PLC and those indicators I always read through the four of them are identification, assessment and care planning, accessing patient information and place of death. Now I know these are personal stories we'll look at and I'm sorry to go back to numbers and statistics you know each individual story isn't a number or a statistic but identification let's just start with that first of all I think Dennis Robertson rightly spoke about a baseline if we're looking at how effective our system of palliative care and end of life care is in Scotland we have to know how many people are in the system or trying to get into the system to get palliative care in the first place so can or starter be can someone tell me how we measure that irrespective of whether the presentation is with a GP or an acute warden hospitals or referral to hospice I kind of don't care how that person gets into the system but when they do get into the system are we counting the numbers of people in Scotland who need palliative care and then looking to identify whether they're getting the service they need. Identify in the first place how do we count the numbers. I think there's no doubt there is a real challenge to counting the numbers and that's been one of the issues with these indicators is actually where are these people because they're looked after in a range of settings palliative care is a journey it's not necessarily a distinct start and end point well start point. So there is a challenge some of that data is not held it's not held in a nationally central repository if you like so there is certainly work to do around the indicators to actually make the capture of that data easier through developing a framework for that. Certainly our director of evidence sits nationally on the relevant groups that are looking at developing we are actually looking to revise those indicators along with the standards for specialist palliative care which I think are 2012 so again significantly out of date and are a priority for our organisation to review. Can I make it, this might be overly simplistic but every person in Scotland has got a kind number information held securely but information is held and whether it's the GP, whether it's hospital or whatever as soon as someone presents as needing palliative care or a palliative care assessment it can't be out with the realms of possibility to flag that to give us a national record of how many people are needing palliative care. And getting a breakdown by age, by gender, by condition to allow us to design services accordingly. Does that happen just now? Currently I don't think it is happening I think there is some amazing work being done through the kind number that I've seen colleagues from PHI present around high end users and being able to trace at each point in which they touch services developing that to make social care data gaps, district nursing gaps more evidence. I think the abilities there is consistently happening, I don't think it is at the moment. Okay, would it be reasonable for this committee and I certainly will to push for that to happen consistently across the country and for us to ask for an update of progress in relation to that, who would be leading on that, would it be HIS? It would probably be jointly between us, we need to obviously involve colleagues in ISD, the right thing to collect, not always the easiest thing to collect so it's about making sure that actually it's possible and that that infrastructure is in place to capture the data nationally. Right, okay I won't ask any more questions in terms of the data collection but I think there's an information gap that's essential for it. I think it's a great point, we should understand where people are and how we can help them before we can deliver any other objectives but if there's no priority in respect to palliative care or end of life care, they don't see that as a standalone issue. Why would we collect in numbers simply on those who have got a, why would we be doing that if it's not being singled out as a priority? It seems to be a contradiction for me there. Right, okay, so I think there's more than one reason to be captured in the data, so one that's locally for local improvement. We are, although we're not looking at palliative and end of life care as a separate system at the moment, that's not to say that we couldn't in future. However, as I say, we do touch across our inspection programmes and we will use a range of data and information to inform those programmes, not just in terms of prioritising where we're actually going to go for inspection but also to help us focus the inspection once we're actually on site. So that's the sort of information that would be helpful to us, certainly not just in acute hospitals but as we perhaps extend the scope out into looking at community hospitals, specialist units for people who have dementia and across our strategic inspections with the care inspectorate. Is there any other responses from any other panel members? Sorry, mum. The National Advisory Group for Palliative Care, you know, I've had discussions around data collection and I'm keen that we do collect data about palliative care. Is there a group to a different view then that palliative care should be prioritised or not? I think the National Advisory Group is obviously very keen to develop a strategic framework for action following on from the living and dying well, the good work that was done there from the action plan, the recommendations made from that and then building in progress. So I think they're keen to develop palliative and end of life care so that there's equitable access across Scotland. As a priority or not? Yes, I would think it would be, yeah. So can you just develop that bit further? I'm going to move away from the data collection for the moment. I think it's really important in terms of getting on top of what we have to do as a society without that. So in terms of inspecting the quality of those who do receive palliative care and I accept will be those who don't receive palliative care and we have to give them that service, those who do receive it. How do we inspect the quality of that care and I'm interested in the care pathway. This committee for some time now has said we're inspecting a hospice or inspecting a hospital or inspecting a care home. It's a snapshot in time quite frankly and we have repeatedly said as this committee, when you get into a care home or you get into a hospice and you dig out the patient records, we'd like you to go back six months, one year, two years, three years, five years quite frankly and look to see what the story is behind that individual. So it's not a statistic. So what work has been done to pick 105, I don't know what the statistically significant number would be, but 500 human beings and say they're currently in receipt of palliative care. Let's inspect their care pathway, not just the care they're receiving at that time, but what their human story has been throughout the system. So we've said as a committee repeatedly that's the kind of thing that should happen. So does it happen? Is there any intention to make it happen? Any comments on that? Certainly in terms of our joint inspections of services for adults that we carry out with Healthcare Improvement Scotland, it's beginning to happen in that we've carried out four of these joint inspections to begin with as part of a programme of Scotland-wide inspection. What we look at there is to see that services are working well together to deliver good care for adults and older people in particular. We have a specific quality indicator in those inspections where we look at the prevention, the early identification and intervention at the right time. And that allows us to look at the way that palliative care is planned and delivered across healthcare and social care. And what I think is absolutely critical is that, as you say, that the care pathway is looked at, that we don't simply limit ourselves to looking at what happens in buildings or in services. And what we see across the country is that in the four inspections that we've carried out to date, in three we've found some encouraging signs of partnership working. In one further case we've made some recommendations about the need for social care and health to work more closely together to get that pathway joined up so that people don't fall through gaps and that services are talking to each other and sharing information. I'm conscious that I might not have articulated myself very clearly, not for the first time, I have to say, but I'm not talking about the pathway, a kind of linear pathway in terms of someone's in a care home. How's GP services interacting with that? How's the support with acute services anticipated? I don't mean that, what I mean is almost like a timeline. So digging back six months, one year, two years to look at the quality of experience for that individual. So we're assessing the quality of service to the individual and not the bricks and mortar within which the individual resides, specific to pallity of care. So Mr O'Cashiner said that's maybe starting to happen more generally, but do you think it would be helpful if we did that specific for pallity of care? Well, if we're looking at a long-term pathway for an individual then I think it would be helpful to look more broadly than just at pallity of care to make sure that all the aspects of care over a long period of time are provided to that person. And one of the things we do when we're occurring after joint inspections is do file reading so we look at individual circumstances of people just as you're saying and say let's look at that person's history of support and intervention provided to that person and make assessments about whether it was the right, whether there are lessons to be learned from that, whether there are improvements to be drawn from that. So that is beginning to happen at the moment. Sorry, I just kind of spend of that. So we're looking at the files but we also sample 20 people out of the 100 files who are using services and we speak with them and their families and their immediate carers. So it's an early start to that work but I agree as we're looking more broadly at the quality of care across our services within Health Care Improvement Scotland we're about to go out to consultation over the summer on what that might look like and that's going to cut across all levels of healthcare and we're looking at the scope and the breadth of what that will look like certainly following the pathway for individuals has been discussed as part of that and other processes. So again looking at our current programme of inspection of people's services in acute care as we're looking out to broaden that out to community hospitals in other areas. One of the key things for us and one of the reasons and drivers for doing that is one there is a gap around community hospitals in terms of inspection at the moment but it's also the fact that at the minute we can see when we're in acute hospitals that sometimes things have happened up or downstream that have affected that person's care within that hospital at that time. So our plan is to look at having a more board-wide approach and I know that's talking about the system again but one of the ways of doing that is actually tracing individuals through the service. So again it's not going to give you perhaps the last six months story but it's building on that and using that approach to actually look at the impact across services on that individual person. I wouldn't come back in and just reinforcing upon this it's not a question the idea of picking 100 people, 100 families where there's currently ongoing palliative care or there was and maybe the person's no longer with us and doing an in-depth drill down into their experiences and doing the same in one year's time or two years' time and let's see if we really are improving the system. I think that would be beneficial to us. That's my personal view anyway but thank you for your answers on that. I suppose listening to what people are saying it seems to me there's a number of issues. One is access and the lack of access at all and looking at guidance about people being treated with dignity and respect. I think we all expect that at all times but when is that in relation to palliative care and how is that measured to make sure that people have access to it and I think then the other question is when people do have access to it how do we measure quality there. So I think in a way the first question is how do we make sure everyone has access so what questions are asked to make sure that everyone accesses palliative care. I agree that it's not consistent that's certainly reflected within our findings that were particularly across the joint inspections of older people services that were doing the care inspectorate. We are seeing some really good practice in terms of teams working together endeavouring to provide access in a timely fashion but we still are hearing from individual people through the process that I described around following up with individual patients and with groups. That is still a challenge sometimes accessing services and equipment so yes certainly within Healthcare Improvement Scotland as you know we are working with JIT and with Quest so building a bigger team around improvement and looking at across health and social care. We've had additional funding into that programme of work so some of that will be looking at some of the higher national level work that we need to do but a portion of that will also be looking at where can we target support post inspection as well. So it's too early for me to say whether access will be a specific point that will be looked at through that work but it's certainly something that we know that's coming out of inspection that's still an issue. Could you explain JIT and Quest? So the joint improvement team that sits within Scottish Government and Quest I'm having a complete mental block sorry. Improvement team that also sits within Scottish Government are coming together so again it's just so that we've got a signal everyone if you can help me out with that. It's looking at bringing these bodies together so that we have a significant amount of improvement talent if you like working across health and social care instead of being working in silos across healthcare, social care, older people services. But when carrying out an inspection would you be satisfied that an institution provided palliative care that was a priority to them because obviously it varies between person and each person and their needs but you almost have to have the systems in grain to make sure that people are looking in that direction and that as well as you know attending to people's immediate healthcare needs whether it's cure, whether it's management and the like also looking ahead at palliative care. How do you measure that that is happening because you can measure if somebody is getting the right treatments that are on the right care pathway and that but where does palliative care fit? I think we're not doing that if I'm perfectly honest. I think it is a gap. We are looking at, as Rami said, we've published four strategic inspection reports. There are another four inspections that have been undertaken that are about different stages of publication. So we are about to review with the care inspector our methodology around that to look at, you know, this is all new for everyday partnerships at a certain stage in their development that we know isn't equal across the country. So it's a really good opportunity for us to look at with the breadth of these inspections and the vastness of them are we actually looking at the things that matter most and we'd be most helpful to partnerships going forward now. It may be that within that process we have an opportunity to look more closely at palliative and end-of-life care to address the issues that you have. You may respond. Just in terms of the second half of your question, which was about how we assess the quality of the care that's actually provided, I can certainly offer the committee some information around that in respect of care services. Now predominantly amongst the services we regulate, we're talking for the purposes of palliative care around care homes for older people, but there are also important roles that care homes for adults and that care at home services play. Amongst the 900 odd care homes for older people in Scotland, then each of those is inspected, unannounced at least once a year and where we have concerns more frequently. And what we do is we ask services to complete a self-assessment about the areas of their strengths and their weaknesses. We ask for statistical information once a year and then when we go in what we do is we speak to the people who are using the service to their relatives, to their carers and we interview staff. But crucially what we do is we observe the quality of interaction so we observe how well the care is actually being provided to individual people. And that's very important when someone may be in an advanced stage of an illness and unable to verbalise or talk with our inspectors that we're able to assess that. We have a set of trigger tools around palliative care that we use for our inspectors to be able to understand and assess what good practice looks like and what it should look like. And then we take that evidence that we collect, both the quantitative and the quality of evidence, assess that against the national care standards and arrive at a grade that we evaluate the services being on a scale from unsatisfactory to excellent. Now we look in some cases, in all care service inspections, we look at the quality of care that's provided and in a care home for older people actually palliative care is integral to the nature of the service. We also sometimes look at particular circumstances about how well people living with life living conditions are viewed as being an integral part of the home itself. And when we look at that particular quality statement, we find actually that the quality levels are broadly consistent with what we would expect to find if we were to look at all aspects of the care. And that is that a very small percentage of care service or care homes are unsatisfactory, about 1%. And that actually there are some that where we find care that's weak, some that where it's really no better than adequate, but the majority of care is good about 40% and very good about another 40%. So there is a good story about what is happening out there. But when we identify the poor practice, then that's where our improvement focus comes in and we seek to work with the service to make sure that it really comes up to scratch very quickly. Yrgyn? I was just going to add, I think the point about access and the cases that we see and you'll see the case that we actually put out in our compendium this month which related to palliative care. The issue was about confusion around whether or not that individual was receiving treatment or was actually needing to receive palliative care. So I think we have to remember that in a lot of the cases, especially that we see, it's not necessarily clear that that person is receiving specialist palliative care services. But they are at end of life and they require end of life care and their families need to be involved in that care. So it's not necessarily an eye-the-raw, but as I say, in the case that we published last month, it's very clear that there was confusion amongst teams of professionals within the clinical setting about whether or not that individual was receiving palliative care or whether they were actually receiving treatment. Yrgyn? On that, I suppose there are conditions where it's difficult to see, which are kind of, you may be able to save somebody's life, but on the same hand it may be that you don't. There will always, I suppose, be times when people have to have an eye on palliative care, while also possibly looking at prolonging life and given treatment. So that is probably complicated and I can understand where maybe some of those confusions arise. I think the particular difficulty in that situation was that the messages that were being given, there were conflicting messages being given to the family. So one part of the team were explaining that actually the individual was receiving palliative care and other members of the team were offering treatment. And so the family were obviously very conflicted in that situation. Yr Llywodraeth Cymru, your definition between palliative care and end of life care? Palliative care is a philosophy and end of life care is just part of palliative care. Really the separation I think causes confusion. Palliative care is about good care when somebody is diagnosed with a life limiting illness and really to get good end of life care you need to recognise that early on in somebody's journey. So when I talk about palliative care it's inclusive, end of life care is inclusive, you'll not get good end of life care until you start earlier on in a person's journey. Because people have got to live with their illness through all their treatments and then eventually they may reach a stage where they're going into an end of life care situation. But an end of life care isn't easy to diagnose because many conditions if you take for example dementia somebody can be at end of life care for two, three years. It's very, very difficult to diagnose when somebody's actually at end of life and I think that's recognised in the guidance that's been produced. Guidance for caring for people in the last days and hours of life. It is very hard, it's very hard for people to say this person has now reached end of life. We're almost back to Dennis's first question there. Colin, did you want to supplementary on this? I'm sorry. I'll give you a fourth. Should we have maybe a staged process? I mean it sounds to me it's when it starts and in a way we all know at some point we're going to need end of life care for most people are going to need. So is it that we maybe don't start palliative care early enough? When people are here and healthy could there be a plan, a discussion about where this to happen then this is the way I would be cared for and then as people's health deteriorates or people are diagnosed with something that's terminal those discussions become more intense as the picture I suppose unfolds and you begin to realise the circumstances you may be up against and that then almost becomes a life plan that follows you throughout your life to a stage where by the time you're speaking about it as being imminent you've already spoken about it a lot in the past so people know your wishes and it doesn't become a difficult thing to talk about anymore. I think that would be the ideal situation that it's a cultural change to talk about death and dying is perhaps what you'd like to happen in the future is easier when you're well, it's when you become unwell and then your wishes might change and that's why you need to start the interdisciplinary care plan when somebody has been diagnosed so that you'll learn about what their wishes are for the future. Anyone else? You okay now? Thanks brother, I had a supplementary from you Colin, was it another area? No it was actually something one of the answers that was given to Rhoda Grant that was in terms of identifying the gaps that appear. We're talking very generally here about palliative care as if it's, I know there has been some notice of the fact that people are different but there are some serious difficulties obviously in certain conditions as you head into the process of palliative care. So I'm trying to sort of get my mind around the real aspect of identifying the gaps that you've said exist in the services that we provide in terms of what conditions are we struggling to find a pathway to end of life that are proving most difficult to provide. I'm not sure that we have enough information at the minute to comment on specific conditions. I'm just saying that you have a difference obviously between the way you would perhaps deal with someone who's coming to end of life in cancer or dementia, what about things like Parkinson's or Huntington's disease and stuff like that. There are differences instead of all-encompassing. Where is the identification of what we actually require in certain instances? How difficult are these specialist services? How easily available are they? The discussions you've had in your group, I think we all from experience would recognise some of the best palliative care would be in the cancer area where it's being developed over a number of others but that would not be reflected in other life shortening conditions or terminal illness. I think the thing with palliative and end of life care is that palliative care is based in need and not diagnosis so really palliative care should be there for people with all life limiting conditions. That could be the neurological conditions, Huntington's, multiple sclerosis, end stage diabetes, end stage cardiac disease. Palliative care is an approach that you want to look after that person and make the care centred around that person no matter what their condition. I'm aware of that. What I'm looking for is where are the difficulties in providing that just because we say palliative care doesn't mean to say that one setting is right for one person and one setting is wrong for somebody. Has an assessment been made as to how easy it is for instance to find somewhere that someone might say Huntington's disease can go to because I know for a fact that it is incredibly difficult in certain instances to find that type of care for someone. Has the assessment been made or are we still talking just in the generalisms of palliative care here? I think from care home providers it's really up to remembering that some are private providers, the care home would assess if they can meet the needs of that person. Which takes me back to the fact how easily available is it because if we're leaving it to the individual care homes to decide what type of care that they're providing, how does somebody in Aberdeen end their lives in their own community or perhaps they have to be sent to Glasgow to have the facility that they require for their particular end of life need? The local authority has a responsibility around particular individuals but I think the point you make is a very important one about the nature of how and where services are provided and actually one of the things that is likely that we're going to see in future, looking to the future, is the changing nature of provision about saying well actually for some people residential settings are not like a care home for older people are not necessarily the right place or the place they wish to be in to spend their final years and actually that in some places intensive care home provision might be what somebody prefers so it is important to make sure that there's a choice and that people have the ability to genuinely exercise that choice, absolutely. I don't think it's what was after but there we are. I suppose the issue is we might develop that yes Dennis thanks is what choice is there and how we can create that choice but at the end of the day I suppose it's the most challenging thing. Richard Simpson? Yes, I think it's the quality efficiency and support team if I remember correctly, it's Quest, just to put that on the record. There have been a number of points raised that find considerable interest. One is the research issue which hasn't been mentioned and I think we're talking about audit and obviously the inspection system is mainly audit based but actually developing research so that we know whether Mary Curia right, 11,500 people dying every year have not got effective palliative care, I don't know where that came from but getting research into that so one question is about research. My other question is the government announced £3 million for community palliative and terminal care some years ago. Do we know what's happened to that? Has there been any assessment of what's happened to that and in terms of primary care because primary care the GPs are best placed in the community to provide the final inter-sipatory care plan. I've just been through that with my mother-in-law we had an excellent GP who said these drugs should be administered if this happens so they didn't have to call a doctor in to say that's going to happen. The drugs were there, there was a package that they could open and they could open those, they weren't having to go to the chemist to get it. They were available 24-7 for that last phase and okay the medicines may have been wasted subsequently because they weren't actually used but nevertheless it resulted in a really excellent plan. We all felt good about it and the person concerned had a good death but will end of life care be part of the new inspection system for primary care which has been announced by the government and if so are either of the organisations or any of the people present going to be involved in that. Are you involved in having discussions as to the nature and format of that inspection process? My question is research to give us the information and what's happened to the £3 million that's been announced already and what's going to happen on the inspection system for primary care because they are critical to this delivery. I think we're obviously on the edges of this discussion but perhaps two helpful things to know. I know certainly Mary Currier looking closely at our investigation report summaries at the moment to see if there's anything that can help inform their work which I think is useful and I know also that the Scottish palliative care partnership are doing the same thing. So hopefully that will support some of the research work that needs to go on. In terms of GP provision we actually receive very very few complaints in the area of end of life care around GPs which suggest to me that actually it's an area that is being done well. Again in terms of GPs our organisation is involved in that work. I'm not close to it but I would be happy to ask for some written information to be submitted if that would be helpful. That's one of the important points. We're obviously not involved in the inspection of healthcare services but in terms of social care services then we are reviewing our methodology at the moment both for scrutiny and improvement with a view to the new national health and care standards being in place. And those will be critical I think to ensuring that we can develop a way of assessing the quality of care to make sure that it really meets individuals people's needs and I think that comes back to some of the points that Mr Doris was making about making sure that we're looking at the real experiences of people as well, not simply statistics. One other question and that is one of the things that certainly I was involved in developing when I was chairing our hospice management committee was in liaison from the hospices to the hospitals or in the case of those where there's a hospital unit in the nail service getting them to liais closely. And I just wonder again in the inspection system whether we are ensuring that there is good liaison because the hospices have really good expert knowledge and actually getting them into the acute units so that they can advise people quickly on effective terminal care, whether that actually is happening or not, whether that service exists in all 32 acute hospitals. I'm not 100% sure about the 32 acute hospitals certainly from experience there is good communication between hospices and with acute hospitals. Again it's not something that our specific older people in acute hospitals inspection programme is looking at at the moment. That might be something that you'd like to have a think about. Thank you. Has there been any assessment of that sort of what I mean is you know we say that there's good. It's between the two not that I personally am aware of recently. I'm just wondering that you know we mentioned earlier on in certainly specialist parts of care those who have experienced that and families have experienced that it's been very good but you know and it's generally thought to be good but it goes beyond the specialist. So what assessment is taking, what evaluation, what inspection, what of palliative care teams within hospitals. Well within between the hospital and the community, there's been any assessment so we can say confidently that all of these services are being, are to a standard and a quality that we just presume that they are. So again we're touching on it very lightly within our joint inspection programme if we are speaking with patients and relatives who have moved from hospital to hospice perhaps back to the community but it's not something that we're formally looking at at the moment. Thank you. Is that anything that you've identified? Yeah I think we've seen a very small number of cases that relate to not the interface between hospices and hospitals but where people are returning home and we've seen a, so they're then under the care of their GP so there have been some issues about the transition from hospital to home and things like pain management. We've seen cases that relate to that. Okay, any other questions? Bob? Yeah, thanks. I know Dr Simpson again returned to the idea of identifying those in need of palliative care and assessing the quality of service and I think we will need to be brave and fearless and accepting that the more we do that the more we'll identify service shortfalls but that's where we are and it's a responsibility to plan forward on that. What I was wondering was we talked about palliative care teams and hospitals and we've talked about various health and social care professionals. Who's the champion of the person who needs palliative care? Is there a single point of contact for the person in the family? Is it the GP? Is it our specialist? Is it a social worker? There's a multi agency approach and I get that. There's always, by its very nature, multi agency approaches leads to potential communication issues and that's the nature of it but is there a single identifying point of contact in terms of providing support for the individual? And actually given the fact that we are scrutinising the carers bill just now, looking at the bigger picture so not just the person potentially in receipt of palliative care but the at home carer who's actually providing some of that palliative care themselves in the support they need. So is there an individual who we can point to to say that person is looking at them and I did the numbers and statistics but not as the number, not as the statistic, not as the rigid or flexible structure but just as a family and that's the go to person to champion that individual and their family. Who would that be? Certainly within our joint inspection findings in some areas we're seeing evidence of good practice where there is a named healthcare professional for that family. Now that may be a different professional depending on the primary needs of that person. Whether that's consistent across the country I'm not sure but as I say we're certainly seeing good evidence of that. In terms of carers we are seeing developments around carers assessments being undertaken for example but we're certainly finding that there is still a gap with carers assessments and actually subsequently following assessment. Some carers are saying that they are not providing, they're not provided with the personal support that they would perhaps want so again it's one of the things that's coming through in our inspection findings. I don't know if anyone else wants to come in on that but we're setting the scene for a future inquiry we're going to do today. Who would be responsible for drawing this together on a national basis? I accept that in some areas it might be a social worker who's got an interest in other areas depending on the condition that calling care made that point very well. It could be a nurse specialist who's that champion but a lead professional or a champion for the individual and family. There's some good work at a local level Ms McCree you mentioned in relation to that. Is anyone drawing this together at a national level to roll this kind of best practice out? Within the boards there will be an executive lead for palliative care. Again that will link eventually to families and directly but there is that strategic lead as well as the individual local work. In terms of that does that lead person look at the inequalities in that region whether there is good practice, whether there is an absence or whether there is poorer practice? How do they evaluate the gaps I suppose that identify the gaps? How they're doing it, I'm not sure but they are certainly linked in with the national groups and national work that's happening at government and strategically also. Do you know of any of that's work that's going on in terms of learning from best practices, sharing intelligence, the government's office involved in any of this in terms of their experience? Not to that level, no sorry I don't. If I could just make a related point, no I think that having a lead person is happening obviously in certain areas but from the cases that we see, sorry I know this is slightly tangential but I think it's a really important point. The cases that we see, one of the primary issues is that the people that have the most information about these patients, the carers and the families are not being involved in the discussions and the decisions around the end of life care. So yes I think it would be really helpful if there's a lead person that has that responsibility but fundamentally I think there's a more basic issue which is we're not asking the people that have the information about these patients how to treat them and that seems a shame because they're the people that know them best. On that point I mean that is an extremely important point and one of the indicators of quality that we assess in a care setting is the views of relatives of carers of individuals who are resident in a care setting because we find that their views are really essential to being able to get an understanding of how good the quality is that's being provided. The other aspect of this is not always clinical interventions when I'm thinking about caring the community and the objective and the choice of people to be at home at that point and carers who are in on a daily basis maybe up to three, four, five times a day how we develop that workforce and view any influence about how you develop that continuity in that situation is very, very important. Absolutely we regulate and inspect care at home services and again they are subject to an annual unannounced inspection. Now the nature of that inspection is very different because the nature of inspecting what happens in someone's individual home is different to the nature of inspecting what happens in a residential setting where we have the right of access 24 hours a day. But we do inspect those and we find the quality of care at care home services to be good. We published quite an extensive report last year on our findings over a number of years and I'd be happy to share that with the committee if that would be helpful. What was asking me was are we moving to a point where we're not just caring for people to be at home and stay at home over a longer period of time. We're moving into a phase where as the objective to give people choice, die at home and whatever it is so it's quite a different challenge for those care workers who are going through that whole process of someone who they know for a considerable period of time coming to the point of death. We know that nurses and others are trained to deal with those situations. Are we seeing any investment in that workforce to enable them to play and have a full role in that sort of situation? That's a really important question and will become increasingly important as the nature of provision changes. From our joint inspections with Healthcare Improvement Scotland, we found in some areas, for example, when we looked at the provision in Angus, we found that the proportion of older people who were living for the last six months of their life at home was significantly higher than in other parts of Scotland and they had improved access to palliative care including day treatment. So there are some parts of the country where that provision is clearly more embedded and working better than in other parts of the country. Who, as an inspection, is that you're able to evaluate the quality of palliative care at a community level, not yet? To a limited extent. I think we would have to be quite careful about the conclusions we're talking about. Is it something you've identified as a priority as an inspection? Well absolutely and one of the things we're doing at the moment is reviewing the way we scrutinise and inspect all types of care service and how we look at care home services will be a really important part of that because they're going to become an increasingly important part of how people are cared for in the future, not just in terms of palliative care but right across the piece. I'm aware that there was a conversation between Aberrami and us but have anybody else wanted to comment on that? No? Okay. Mike Mackenzie. Thank you convener. It's really kind of picking up in a sense on the territory that you were covering because it seems to me our discussion this morning has been largely subjective and almost anecdotal. Dr Simpson mentioned the Maori Tury study that suggested 11,500 people I think who don't receive palliative care or adequate palliative care but if the committee was to come back to this issue this subject in three years time or five years time or ten years time, how would we know if things are improving both in terms of quantity and of quality of palliative care? In terms of quality then the evidence we seek to present is based on our scrutiny evidence so we would be able to and are able to say well in this year this number of care services providing this type of care we're performing at this level, this year it's at this percentage. We also collect and that's focused very much on the outcomes what we observe the quality of life to be for people using those services. We're also able to collect and track more raw data which is about input. So the number of people who, the number of care services where NHS Scotland policy on doing others as a state is in place, the number of care services that have an effective bereavement policy in place, those things are measurable and can be tracked and we do track them. What's important to recognise though is that when we're talking about people's outcomes those kind of inputs and policies only go a certain way and actually for us measuring quality is insufficient just to look at the inputs. We need to look at the outcomes, what's the impact of all those policies and does it help people live better lives who are in difficult circumstances? In terms of the divitso in five years time how would we know that things had improved? We are moving into quite a different landscape in terms of the way health and social care is being delivered. I think we've a way to go to really make our methodology really robust in how we're measuring that. I think there are things that we are measuring around fundamentals of care that should be there for absolutely everybody regardless of where they are around dignity, respect, person centredness, food, food and nutrition, assessment of capacity that we are now starting to see an improvement and hopefully that will, that trajectory will continue. So there are already measures I think in place that we can see but we have to be looking at being better at how we're capturing and using data, how we're sharing that across agencies and how we're getting better at measurement in general. By our nature our work is anecdotal. Our job is to tell the stories and families so I think our evidence will always continue to be anecdotal. I think in terms of what improvement would look like it would be around families stories, around better communication. We've recently produced a video with Ness that is actually a family where the mum was the nurse, the three daughters are all nurses and they tried to bring a complaint about the end of life care of their mum and they used terms like we felt that we were an annoyance, we were dismissed, we were intimidated to raise concerns so good for us would be to not be receiving those stories and also on the complaints handling side of things it would also be that where families are raising issues that there wasn't a defensiveness around that and we see a lot of good practice and I know we noted that in our submission but we still also see a lot of defensiveness where people are bringing their complaints so better for us would be that loss of defensiveness. If I could just follow up a wee bit it just seems to me that in terms of our data collection and analysis and of presenting the overall picture this always seems to be a work in progress so there's no real baseline that we can measure progress against and demonstrate progress against so could perhaps turn this question around a wee bit and say how have things improved in a measurement favourably over the last five years? Certainly in terms of the number of, I mean in terms of some of the sort of baseline statistics as it were what we have is an annual return where we seek the same or similar information over a consistent number of years from care services and use that to track whether the indicators are going in the right direction in a sense so if we look at anticipatory care planning as I said you know the number of people who have died with an anticipatory care plan in places that isn't from 38 to 62 over the last three years but if we look at other areas as well we see similar rises in the number of services. 38 to 62? Yes, from 2012. Right across the whole country? In care homes for older people. 38 individuals? 38% of people. 38% are right. Yeah yeah yeah so this is the percentage of people who at the point when they died had an anticipatory care plan in place so who had risen in care homes for older people from 38% to 62 so there is some improvement to track there and there are other indicators as well so if we look for example the number of care services where care homes for older people where there is a gyda hwn yn ystod o gymeramol neu o'r cyflaen ar maen nhw'n cael eu gwahanol y dyfodol. Yn y dryr y pwyg Medicine, mae maen nhw'n cael 80% o'r hanes o rydych. Byddwn i'n ddweud i'r ddiddordeb am yforydd gan flynyddechol, a rydyn ni'n gallu gyntaf. Ond y gallwn eu gwahanol i fynd gallai dros yno ar gyfer y cyffersiad, os yw eich gwybod am yr ysgrifennu o'r cyllidau? Ac ydych yn ychydig ymlaen ni'n ddau'r cyfle gwybod o'r cyfle cyfan ar hynny, y dyfodol yw'r cyfle gyda'r cyffredinol? Mae'n tynnu'n bod y cyffredinol yma y cyfroedd yma yn cyfroedd yma yn cyfroedd yma yw'r cyffredinol yn cyfroedd. Ond oes yn ymlaen i'r cyffredinol yn gyfroedd yma ymlaen i'r cyffredinol yn ymlaen i'r cyffredinol o'r cyffredinol yn cyfroedd, Rydych yn Patiwn i'w byteg cysyllt y tro a'r gwahydiau ei weld o'r cîm yn cael y maedw i. Felly mae'n dweud bod y cysyllt fel yng Nghymru, nad yw chi ddweud â'n ddangos fel gyda'r yn cyfranswr E Lob. Roedd y cîm efallai ei wneud mewn cyfranswr E Lob yn cyfranswr E Lob, rydych i gefnwch a gwahanwch ei gwneud mewn gwahydiau i gyfranswr E Lob. Roedd yn cyfanol am maedwg yna iddyn nhw yw'r cyfranswr E Lob. Rwy'n ôl yw'r cyfranswr E Lob wedi eu lluniau. felly mae'n ffeilio'r cyfrwyntio gwylwg, mae'n gofynau feddwl i'r adrwys gwahanol, ac mae'n gynharu'r ffordd y dyfyrdd o bobl ymddodau fy nesaf, yw'n gweithio i meddwl y dyfyrdd o'r ffordd o'r cyfrwyntau? Rwy'n cael ei fod yn ysgol yn ysgol. Wel rwy'n meddwl y cwaith iawn yn ddweud o'r cyf superhero, ydw i chi'n da o bwysig i'w oedden nhw'na Mae'n dgymchag fydd yn ddigoneg ddiwedd yn dylai'r nine. Felly, mae'n ddysgu i fynd i'r ddслиadau o'r erioed newid. Mae'n gwybod oddiwnio'r hyn o'r newid o'r pethau i gyfryd. Yn 10 oed, yn y gallu bod yn tynnu'r nhw, inni yn gyd yn ydydd. Ond gweithio i gael gweithio'r amgylcheddau a gweithio i gyfrydau i gael gweithio'r gweithio. I'm moving to agenda item no two, which is an opportunity for those members who attended the fact finding visit in Glasgow, and the meeting with members of Marie Curie Expert Voices Group There was a number of members who attended the sessions. Bob, do you have any comments on the group that you sat with in Glasgow? Yes, I sat with a group of younger carers and I have to say that younger carers felly mae'r ffrind yn ychydig i gyda'r gwaith bywyddiol yn ddysgol nhw'n ddigwyddol iawn, o'r ddiolch, o'r trafod, o'r ffordd, o'r ddau'r cyfnod o'r ddau'r cyfnod oed, o'r ddau'r cyfnod oed, o'r ddau'r cyfnod oed, o'r ddau'r cyfnod oed. Pryddoedd hynny i'r ddau'r ddau'r cyfnod o'r ddau'r cyfnod oed mewn meddwl yn gweithio. I think that came out pretty strong in relation to the people that I spoke to. I think that there was also a recognition that schools aren't always as attentive as they could be to the care issues of young people attending schools. That was of some concern and the need and support that other agencies could provide, whether within a school or elsewhere, was quite important. Of course, as you'd expect, the issue of transitions came up as well quite strongly. Those were my initial taking of it. The thing I was most struck with, to repeat myself again, is sometimes what the support that young carers want is the support to get on with the lives that one person told me in terms of respite care. What they were looking for was just making sure they could get their couple of hours to go out at evening once a week and socialise with some friends. That would be respite care for them, knowing they could do that and not having to worry about the loved one that they would maybe routinely have to care for. Quite often the asks weren't actually that huge. They were specific and they were focused and they were unique to the lives and their family circumstances. It was pretty humbling to speak to them. Their asks are really important but they're not always huge. You just have to focus and drill down on what's most important to that person. After all, they just want to be able to get on with their lives as well as do their caring duties. Thanks, Bob. Is there any other one, anyone else who wants to comment on the group's rudder? I had quite a varied group, I suppose. What they had in common was a lot of them were from more rural areas. I had parents looking after children, albeit adult children. I had somebody who had cared for a partner who had passed away and others that were caring for elderly parents. There were a number of really good points at their east. They were glad about the bill and thought that this kind of provided a focus on caring. That was good and also the change in terminology between carers' assessment to adult carers' support plan. I think they welcomed. There were a number of things that they thought were missing from the bill, things like emergency planning, carer involvement in admission to hospital and discharge planning as well, and also what the carer needed as their personal outcomes and how they went about living their lives and also the ability for a carer to say, I can't do this anymore and to be able to opt out of caring altogether. I think they thought that was missing from the plan. They had concerns about the eligibility criteria. They were keen that there was a minimum level of national criteria, which would mean that everybody had equality of support. That was really important to them. They also said that when people were being assessed, they not only assessed how long people were caring for but actually the skill that that involved, because I think a lot of people were concerned about what they were being asked to do and the level of skill that involved. They also said how they were being asked to do it because they were saying at another point that they were being asked to do things that paid carers wouldn't be asked to do in ways of lifting and handling where two people might be expected to do that if the carer was on their own and they were being asked to do that without any expert training or help or indeed equipment to do it. There was that kind of level of help and assessment required. They also were concerned about the support they received at the minute being more crisis support rather than on-going preventative support, allowing them to care properly. There was concern also about the advice and information services. A lot of them had been involved in local groups that had set up within the voluntary sector advice and information services and they were concerned that because this was part of the bill it might be that some local authorities would take this in-house instead of maybe supporting good practice within communities. That's why I raised that with the local authorities last week. I think it was an important thing where there was expertise within the community. I touched on hospital submission and discharge. They felt they weren't being treated as equal partners. They believed that people should be discharged with a care plan but also that their needs were being assessed when the cared for person was being discharged as well. They felt an awful lot was being put on them and someone said that they felt they were being bullied, being asked to love their partner because of the amount of care they were willing to take on. I think that's really important that carers be valued as making a contribution but not being forced into making that contribution. They talked about identifying carers and I think that is really important. They talked about short breaks and I think that's something that maybe we need to think about because others have talked about short breaks and it's short breaks versus respite care. I think what they were saying was they're being asked to work long hours without a break. So there needs to be respite care maybe as part of their day to allow them to go about their lives and to go out to work or whatever. So there needs to be that ability of care put in but also short breaks was something quite different. It was about being able to take a holiday and for people certainly on islands they were saying that sometimes doesn't work by the time you get off the island. You know you've lost half your weekend if you're actually going to have a holiday you're not going to have full entitlements that need to be looked at. There was also issues about where your cared for person was also your partner. You would not want to have a short break without going away on holiday with them and it was about facilitating that level of care within kind of a holiday situation that the right accommodation could be found that the right support could be found. So you could go away together or even as a family and enjoy a break but that was difficult to do. So I think that all had to come into short breaks and differently of respite care. I think the two were being confused and I think we need to be clear we don't confuse the two. Other things they talked about was right to advocacy I think which was important but also the inverse relationship between deproton, and the amount of care received they felt that if people were articulate and able to stand up for themselves they were able to get more help and support whereas people with a lower expectation and maybe not knowing the systems and maybe not quite so articulate weren't getting the care they needed so they felt that that was really important that we tackle that when looking at support for carers. Thanks brother. Anyone else? Dennis is not here so Colin did you attend any of the? Yeah I attended the second one with the expert voices group and a lot of the stuff that's been said covered what was there as well. I think to cut my comments to Minimalism or Minimalist I should say I would probably suggest that the thing came out at the end and one of the comments from one of the people who was attending was really what we're looking at is trying to get a bill for what is kind of obvious for the difficulties that are there. When somebody is diagnosed with a terminal illness and there is a carer duty that is foisted upon people somebody somewhere has to take the lead in helping them through the bureaucracy of benefits to take that level of stress off them, the endless form filling, the linkage between the partners and perhaps social care local authorities etc etc. As well as helping them get a handle on how to actually deal with the fact that they're living with somebody who is heading towards end of life and cutting it down to the very basic aspects those were the things that they were really coming out with which was help in getting through the bureaucracy and then the help in various forms has been pointed by my colleagues. Thank you for that. I attended the Glasgow session and it was a group representing minority interests, minority backgrounds and as you would expect one of the issues in that group was the need to understand and respect the cultures and the community of the people that they were caring for and that was an important context that we're looking into that. There was a number of points that some of them already mentioned but in terms of work and employment which was an issue where there was an assumption that there was a strong family in place that they could do everything. You took in to work, self-employment, not necessarily dealing with an employer. There were issues here and I think that's been mentioned earlier that it's not just social services, it's the work situation and the difference of having either a good employer or the flexibility of work that can dramatically change people's situation and their care. Following on the cultural aspects of people who provide support, there was also the issue about training for carers, understanding of the conditions, what they can do, what they can do and the recognition of that line that Rhoda mentioned some of that area. Of course, I don't know where it was mentioned earlier in other groups but we have recognised as a committee that we're all living longer lives but the carers themselves are becoming people who need care for themselves. They are carers but they are also living with conditions that limits their quality of life and that needs to be recognised. There was in terms of the financial support issues around flexibility, respite care, all of these things and I think while Rhoda mentioned that a change in environment can be a change as good as a break, take them out of the home environment, creating a holiday environment, a holiday environment for a family or people who are very close that they can both derive respite and a break out of that situation and they don't see it that's recognised and of course if you're dealing with someone in a terminal situation that we discussed this morning then you don't want a break away for a week or whatever, you want to be as often as possible but you do need a break within that development situation which is again led us into discussions about the assessment and the rapidly changing needs with somebody in a declining situation was very important because people just struggling on. You end up maybe with two people in the hospital as a result and that's not good for them as human beings and it's certainly not good for the health services as we know. There was, although the people there had access support and information, they value the independent information, they value the information services, they have got some concerns sometimes about the access of that, the importance of face-to-face information and dealing with people rather than phones and answering machines and sometimes in a situation where there's a bit of a crisis developing or you're just feeling low yourself as a carer that day and calling on some support and what you don't want is an answer machine and no one to get back to you for two days at that moment of crisis for you and of course as we know sometimes that breakdown in confidence can lead to an unplanned admission and whatever we've heard evidence this committee that that can happen. What the carers were telling me that day was that confidence in continuity services, services that they could rely on, people that they could rely on, people who were valued, people who were trained and could do a job and that was coming along. Coming through quite strongly, the assessment process as we've recognised here and other inquiries has seen sometimes a bit random, sometimes a bit ad hoc, families not knowing or understanding the roles of engagement can become adversarial and very stressful. They don't necessarily understand the timetables if there's any being set, they're anxious that there's no set process for review of the conditions, particularly when you've got a terminalness or something like that where it's heading on. Apart from that I don't think the other areas that the identification, a discussion about that and there's an anxiety I think within the group that if we identify more carers then the question is put to me why we'd be doing that and I suggested to them that we're doing that because if we anticipate people's caring role on their last stage we could help them cope and start marries them through that stage and they wouldn't necessarily need help at that given point but there was an anxiety that we started identifying more carers then they felt that the limited resource that was already there would put additional pressure on them as carers and I suppose there's a big transitional point there about how we support the carers who are already identified and in some cases don't feel that they've been supported in all times adequately. How do we get to that unmet need and get this balance that we don't put a question mark on the care and the packages that are already there? There was a wee debate about that and you could well understand people getting a bit anxious but that point of unmet need in those carers out there who need to be identified, who need to be supported at a lower level or even just being identified recognises carers as an important one for managing their situation. So I think that was a quite a long discussion, the groups that were very well organised and I think as a committee those of us who want a quick point before I finish this session. In my apologies, I think apologies to the young carers that I spoke with as well because I just consulted my notes and there were some things that I think they would be surprised if I didn't put on the record that I didn't mention. I'll try and do that briefly. I think firstly I think the point that I made about the cared for person being in hospital and that lack of communication and a lot of young carers felt that there was no record in hospital records about who the carer was and young carers been squeezed out of that process. I think that's reasonable to say. They even suggested the possibility of a young carers card that could be recognition when engaging with various public services that they were in fact a carer and they noted there already is an emergency carers card which we haven't looked at as a committee but it exists and it's not a universal thing so I wanted to put that on the record. They also made the point to myself which I didn't make. I did say that the bill didn't refer specifically to young adult carers rather than young carers but there was a feeling that because there's no statutory obligation to have served a specific for young adult carers that young carers and more generic adult carers services might evolve but young adult carers don't get what they need and they're needed for specific services in relation to them and they wanted me to put that on the record as well. They also wanted me to put on the record that any review process in relation to assessments and how if you disagreed with what the assessment was from the local authority about what a young person support plan would be, what recourse do you have, how independent is that recourse as well. They asked about that and I think finally they mostly cover what they raised. They spoke about a feeling that social services were not particularly good at signposting young people to support services. They thought that the young carers statement could be an opportunity to improve that but quite often identifications of carers came far too late in the process and that they felt that deliberately or otherwise, I'm sure otherwise, convener, social works, primary view seemed to be focusing on the cared for person and not enough on the carer and their role within the process but they were hopeful that the young carer statement could address that but again they said it's about driving change, not just having this as words in a piece of legislation but actually driving change at a local level. So apologies to the young carers that I didn't put that on the record. I'm in my first cut at it, convener. Thanks Bob. Is that Rhoda? I think it was reflected in both the events. I think I can say on behalf, I spoke to people who have attended the manicure event, the expert voices event that I was unable to attend and the Glasgow event, there were a great opportunity for the committee to meet with people on the front line of caring. Right across Scotland as well, young and old in diverse groups, a sincere appreciation to those who made that possible for us to engage in such a way in Glasgow and here in Edinburgh. It was very, very useful indeed and I hope that we have in some way reflected the discussions that we have which are now placed on the record and will be considered again further in terms of our deliberations with the scrutiny of the bill. So thank those organisers very much on behalf of the committee. I'm going to ask the committee at this point to move to agenda item number four which is in regard to our annual report. As I said earlier, we're not expecting the cabinet secretary to arrive till about 12 o'clock. That will allow us time to conclude our agenda item number four and return to agenda item number three when the cabinet secretary arrives and get a break in between. The committee agreed. Thank you. Item number four, as I've said, is consideration of the committee's annual report for the parliamentary year from the 11th of May 2014 to the 10th of May 2015. It's the convention that we consider the draft report in public session. As the committee agreed to the draft of the annual report, including change, we haven't, we haven't, we need to get any, you know, any comments from, from the minister before we would change it, from the committee before we looked to any changes in the report but I presume that the report being a factual account of a record of work that there wouldn't be any. But I'm happy to take any comments of, yes, Bob? Just, I'm fine. I'm not suggesting any, any changes to convener. I just would like to place on record given the significant amount of work we've done in relation to health inequalities. And in particular, we're chambered debate on the 26th of March 2015 where we sought to get to conveners, advice conveners of all other committees in the parliament looking to play the other part in tackling health inequalities that I'm sure this will be something that we'll wish to return to and work with other committees on because I think it's something, I know, you personally as convener Duncan, we want to push this forward on an ongoing basis. I just kind of wanted to, on the public record, draw that to the attention on the official report that our health inequalities work will endure and it will endure on a cross committee basis. Thanks, Bob. Any other comments? I've no other comments, kind of have the committee's agreement to the draft on your report. Thank you. We now suspend at this point some more coffee, folks, if you can bear any more coffee or some fruit or whatever. We now go to agenda item number three which we agreed to defer to the cabinet secretary was available and we welcome the cabinet secretary. Shona Robison, Cabinet Secretary for Health, Wellbeing and Sport. Brian Slaters here this morning who's a policy manager, health and social care integration and Claire McKinley solicit a legal directorate from the Scottish Government. So I think it was your intention, Cabinet Secretary, to make some introductory remarks and we'll do that and then we'll go directly to questions. Thank you. Thanks, convener. I'll be very brief. I'm pleased to introduce our guidance on hospital based complex clinical care which we published last Thursday and which came into effect yesterday. This guidance replaces previous arrangements for NHS continuing healthcare. It simplifies and clarifies the process, brings transparency about decision making and fairness and equity and funding arrangements. It's firmly based on the recommendations of an independent review which reported last year and I thank Ian Anderson, past president of the Royal College of Physicians and Surgeons in Glasgow who led the review. No one who has been in receipt of NHS continuing healthcare under the previous arrangements will be disadvantaged by this new guidance and will continue to have all costs met by the NHS as long as they remain eligible under the old criteria. In the future however, the primary eligibility question will simply be can this individual's care needs be properly met in any other setting than a hospital. We want people cared for in their own homes within our new integrated services of joined up health and social care provision and vital roles for our third sector partners. As Irene Oldfather from the Health and Social Care Alliance said, when welcoming the guidance, hospital is not a place to live, it's a place to be treated when clinically appropriate. I'm happy to take any questions. Thank you, cabinet secretary. Can you have first questions from Richard Simpson? Yes. I said at the time that when this report came out that I had considerable concerns, part of that has been answered by the cabinet secretary's decision to ensure that the, I think it's 385 people currently getting NHS continuing care in the community will continue to do so as long as they're eligible. So that's a very welcome. But I think we need to recognise that there is now a very substantial divergence from the situation in England, the situation in Scotland, in that in England there are 60,000 people in receipt of the equivalent continuing healthcare in England having their full costs met. And they do have a national decision making tool and they have an independent appeal system and none of these things are going to occur in Scotland. There's going to be no decision making tool. As far as I can judge having read the guidelines, there are no clear guidelines. It simply has this one question which you need to answer and the appeal system is within the board to the medical director who of course will be driven in part by clinical need but will also be driven by the fact of costs because if the health service doesn't have to pay for the costs wherever that person is living then that will be obviously a saving to the health board. So we don't have any independence, we don't have any clarity and that really does concern me. And what also concerns me is this, that I have no clear idea from the guidance as to whether somebody who is receiving considerable and intense care on a continuing basis and can live in the community but requires, for example, in a care home support for such things as peg feeding or indeed ventilation assisted delivery. Or requires specific and intense care for problems including advanced dementia or learning disability with additional needs. Now these individuals may previously been supported under the Cell 6 2008 but will not as far as I can judge be supported under the new rules. If I was running a care home in Scotland I would be very concerned that I would be having to supply these needs in a care home without actually receiving the additional funding and the additional funding necessarily would have to be supplied by the individual if they could afford it or by the local authority if they can't afford it. And the last bit of this is terminal care and we've just had a discussion on that this morning and I don't know where that really fits in to the situation because again in England care homes receive additional funding for all these latter things that I've mentioned. The complex care needs and also terminal care have additional funding given by health boards under the clinical commissioning groups in England but in Scotland is what's the mechanism for ensuring that these people are going to be in the community, are going to be at home or are going to be in care homes and are going to be properly supported and that is going to be properly funded. First of all the reason that the review was set up was because there were many complaints about the previous system. That's why we reviewed it and the previous cabinet secretary kicked that review off and it reported. And that independent review came to the conclusion that the previous system was unclear. You could have a situation where you could have two people in rooms next door to each other in a care home, one of whom was being funded under the previous arrangements through the NHS and one who was not but with very similar needs because the system was found to not be consistent. And that's why the overall happened, the recommendations were made. So with the simple question about whether or not someone's needs can be met within hospital brings a clarity to the situation that wasn't there. Yes it's a clinical decision but it's a simple question that has to be answered in terms of where the person can be cared for. In terms of reviews there obviously is a process in terms of a second opinion and then the medical director within the board but ultimately the ombudsman would be the port of call beyond that if there is still a dispute. Now Richard Simpson mentioned the position in England. Now I have to say that obviously we have two different systems, we have two different policy positions here but let me just give you some quotes from the position in England because I think it would be a mistake to think that the situation in England was perfect and that there wasn't complaints. So the Alzheimer's Society said that there's huge failings and people facing endless delays. Experts are demanding an overhaul of the system. The system is not fit for purpose and fails vulnerable groups. It's a postcode lottery. The health ombudsman says that there are 40,000 outstanding cases with some having waited years for a decision. So I think we need to understand that there are significant concerns about the English system and that it is certainly not perfect and I suppose finally just on the different policy positions what we should bear in mind here is that in Scotland we have 78,000 people benefitting from free personal and nursing care. That is not the situation in England. There is no free personal care down south so we've made the policy decision to assist 78,000 people here in Scotland who get free personal and nursing care. In England they have gone down a different policy route and of course that's absolutely in line with devolution and around the policy decisions that we make here. What I would say to Richard Simpson and I'm very happy to do this if he feels that this would provide some comfort for his concerns is to over a period of say 6 to 12 months to review how the new guidance is working. Happy to come back to committee with any information that arises out of that to hopefully address any concerns that Richard Simpson or anyone else may have in that regard once the new guidance has been operating for us. Thank you for that answer and I certainly agree that we have the absolute right to make separate decisions that are quite different from that in England and I also concur with you that the situation in England is they are finding their wrestling with similar difficulties to the ones we are wrestling with but the fact remains that there are 60,000 people who are receiving full funding whereas free personal care as you know provides in a care home roughly 9,000 pounds out of 34,000 pounds in England. The funding having to be found by the replacement families for the 385 who are being supported will be 24,000 if they can afford it. If they can't afford it that will fall on the local authority which leads me to my supplementary convener and that is what additional funding is going to be provided to the care homes to fund those who will now be looked after in care homes but will not be funded by the NHL. What transfer of funds for those 385 and it used to be considerably more patients who will now be looked after in the community if that's where they're fit to be looked after but will no longer be funded by the NHS. I just want to probe the numbers a little bit of people affected here because of course no one is going to be affected who was assessed under the previous guidance so they will remain with their full entitlement as before. So in looking at the numbers going forward the estimates are that around three quarters of people who will continue to meet the revised guidance and new guidance and a quarter would not. That amounts to just over 100 people. Among those just over 100 people two thirds of them would be entitled because of their income to full cost being met by the local authority in terms of free personal nursing care and accommodation costs. That leaves around 35 people who would be regarded as self funders for the accommodation cost. Obviously still getting free personal nursing care if they're over 65. Obviously there's a separate issue for those that are under 65 but the vast majority are over 65. So in essence I'm not taking away from obviously the fact that those people would have to pay their accommodation costs but in the scale of things it is a relatively small number of people who would be required to pay those costs. In terms of resource transfer we're in a different world now because we have integration so we have one budget and we have an integrated budget and health and social care budgets are now one in the light of the new integrated joint boards. I think for the old ideas of resource transfer from one system to another doesn't apply because there is one system and those resources come out of the integrated joint board. There really isn't a significant saving here anyway. I think we've worked out it's around three million a year which in the scale of things isn't huge. It's not about that. It's really about bringing clarity to decision making around this system because as you know the old system led to so many complaints about the lack of consistency and that's why the review came up with this. Is there ever a perfect system? I think every system will require there will be challenges in whatever system but I feel this has got a simplicity about it that will bring clarity that the old system didn't and hopefully the numbers affected have brought a bit of perspective to that as well. Rhoda Grant, I'll let you back in Richard if you want to question me. I was just surprised at the numbers and I'll look at them closely but they don't seem to add up to me but I'll look at them. I'll come back. I've got Rhoda and Bob first but obviously all the time you need. Rhoda? Thank you. Cabinet Secretary said no one will be disadvantaged because anyone under the old system will remain. That presupposes that people will be disadvantaged in the future people who would have received this kind of support going forward will no longer receive it. It seems to me, despite what the Cabinet Secretary said, that it does appear to be a cost saving exercise. It doesn't seem to be coming from the point of patient care being up front first and looking at our patient needs and how best to look after than rather than how money is paid out and indeed what they would pay. What benefit in this new system do patients get? What will patients benefit out of this system? First of all it's not a cost saving exercise because there's hardly any cost saved so if it was a cost saving exercise we would be saving a lot more than the £3 million that I answered to Richard Simpson. I mean that that is not a large cost saving and at the end of the day all of that resource is in one integrated budget so it's not about saving a resource for the NHS. All of that resource is part of the one system going forward. In terms of those who it wouldn't have been fair, I don't think to retrospectively apply a new set of guidance to people who had been assessed under the illness system so when I say disadvantaged I mean that it wouldn't have been fair to have done that. So the new guidance takes place from the 1st of June and going forward as I explained to Richard Simpson around a quarter of those who are going to be assessed under the new guidance will not get their cost met through the NHS. Three quarters will, as we have said, we have looked at the modelling. Three quarters will continue to meet the new guidance. About a quarter won't. That amounts to just over 100 people. Two thirds of those will get their cost met in a care home because of their income level. So we're talking about a third of the quarter which amounts to around about 30 to 40 people in any one year who will require to pay their accommodation costs. They will still have over 65 being titled to free personal and nursing care. The benefit is to, I think, fairness because if you looked at the previous complaints, the complaints were based around a lack of consistency so you could have two people living next door to each other in a care home. One who was being paid, those whose costs were being paid under the old NHS continuing care system and one who was not but with very, very similar needs a nose with the basis of a number of complaints about the old system. That's why the independent review has come up with this system and I suppose in terms of policy terms, we want as few people as possible to be living in hospital. The policy aim for a number of years has been to try to avoid people living in hospital but for a relatively small number of people that will be the clinical assessment because of particular health needs that they have. That is the only place that they can be looked after, it would be in a hospital environment but I'm sure we would all agree that we want to minimise the number of people who are in that situation. You still haven't said what the benefit of the new policy is to patients? The benefit is fairness and consistency. I don't think that it was a benefit to patients or people who were in a care home in a situation of inequity. I don't think that brings benefit. The benefit is clarity. Those who do not need to be in a hospital is better for those people to not be in a hospital. The benefit is to be in a different environment in a homely setting, either at home or in a homely setting. Hospital is really not the place that people would want to be but if they have to be through the clinical decision making then that would be a relatively small number. Is it not the case that under the old policy people receive this funding outwith hospital depending on their care needs? What the new policy means people will only receive this in hospital so in fact what you're doing is putting a disincentive in place so that families and carers will try and get, if they can't afford to make that provision themselves, will try and get people to remain in hospital rather than in a more homely setting. So actually the policy could have the unintended consequence that more people spend time in hospital rather than less. Yeah but the complaints about the old system were the inconsistency of some people in a care home being funded under that system with the same needs as somebody who was either being funded by the local authority or was a self funder. That's why we had the review. We wouldn't have had the review if the old system was working perfectly well and everybody was happy, it was all hunky dory, it clearly wasn't and that's why there were so many complaints so we had to bring clarity and consistency to it. I've explained to you already that the relatively small numbers of people who would be that small number of self funders who would be required to pay their accommodation costs and I think in the scale of things that is a relatively small number of people we accept that they are people who will require to pay their accommodation costs. I don't think it generates an idea of people wanting to remain in hospital because at the end of the day that will be a clinical decision, it's not about people deciding they're going to stay in hospital. This will be a clinical decision about whether the health needs determine the need for them to stay in hospital otherwise they will not stay in hospital, they'll be in a different setting. But surely it should be gauged on a person's needs rather than where they are being looked after and if somebody has complex needs what you're now seeing is at one point they would have been looked after where their whole care costs would have been borne by the NHS and if they're under 65 under the new system they or their families will bear the whole care costs. Well if they have complex health needs they'll still be cared for under the new guidance, that will be a clinical decision but if they can be cared for in a different environment then their health needs are not such that they require hospital care and surely we don't want to be keeping people in hospital that don't need to be there. So there then would be in a different setting. Now I've already explained to you that the vast majority of those people will get their accommodation and free personal and nursing care costs met under the council under the local authority. There are a small number who are self funders who will have to pay their accommodation costs. Those who are under 65 are a different situation but there is a very very small number of those who are under 65. Most of the vast majority of those who are under 65 already get all of their costs paid for because of their income level and of course those who are under 65 are also eligible for disability living allowance or PIP as the new system brings about. Of course we are looking at the issue of free personal care for those under 65 and that will be part of our discussions going forward. Brian do you want to? To differentiate between the finance and the clinical care here people will still get the care that they need. There will be a very small number that might have to pay for elements of that but people under the new system will still get the care wherever they are. Be it in a hospital they will receive appropriate care. If they are in a care home they will receive appropriate care and if they are in their own home they will receive appropriate care. In England the system dictates that if you meet their eligibility and does the cabinet secretary it's very muddled down in England and there's a huge number of complaints about their system. But if you meet their eligibility then the NHS cares for your personal care needs, your social care needs and your health needs. Now we have integration in Scotland that is bringing health and social care together. Why would we then want to differentiate between those and almost split them back up and say well that's for you and that's for you. But that's what this is doing. If we're talking about moving care into the community out of hospitals providing complex care within the community as close to home or in a homely setting. And surely basing this on where you are cared for not your care need is the wrong starting point. But there had to be a system to decide whether or not someone required very specialist hospital based care. There are some people who require that who cannot be looked after anywhere else. Now unless you're suggesting we start charging people for that within the NHS which I don't think we can do. I mean the NHS has never charged for accommodation costs for example so I don't think that would be the right thing to do. So there had to be a clinical decision making process about whether or not the person could be cared for in any other setting other than the hospital. And then the decision about where they're cared for is a matter for discussion obviously around whether it's a care home setting or a specialist care home setting or indeed at home. But there had to be a clinical decision about whether the person required hospital care or not. I'll let you back in but you're not going to resolve it. You'll get back. I don't know why there isn't any pressure in time to get an opportunity to come back in. I just want to take the members who are asked to get in. Bob. Maybe I'm just getting a bit grumpy this morning convener but maybe say to Dr Simpson he asked five questions rolled into one over a five minute period which had a supplementary on all of them. And he now wants to come back in and ask even more questions. There's a balance to an evidence session Dr Simpson. And if I could ask my question, Dr Simpson mentioned that this could be an incentive to get people with complex needs out of hospital because it would save the NHS money. And Ms Grant said it could be an incentive to keep them in hospital. It can't possibly be both. And we've had both questions put towards yourself Cabinet Secretary just now. So what I would like is just some clarity and assurance that every single time one of my constituents is assessed, they're assessed completely on clinical need. No other issue including financial issues and they'll be at the most appropriate setting. And that clinicians do that on a daily basis and they'll continue to do that irrespective of these guidelines. So that was my supplementary on Cabinet Secretary so can we get that reassurance on the record today? Absolutely. I mean financial considerations are not part of the assessment here. And anyway given the figures I've already shared with committee, I mean there is no cost saving here. And anyway because of the world of integration there's no benefit to one part of the system. It's absolutely not about that so I can give you that reassurance. Right, thank you. Now back on to the structure of it, looking at the figures that you gave that was quite helpful. I think you estimated about 100 or so, 105 cases were. So we've estimated that there are about 385 people who will each year be looked at through this process. And out of those there are about 112 who would not be eligible to remain in hospital under the new guidance. So just over 100 out of those 385. And these are obviously they're not going to be to the one person, their ballpark but generally it's a quarter of those who would not be staying in hospital under the new guidance. And out of those two thirds would be eligible for all of their costs to be met under the local authority because of their income level. I suppose what I'm trying to drive at is the amount of constituents that are in hospital beds because of complex clinical needs won't change. So there's not a bed management issue in relation to this in terms of making sure we've got the right beds in the right place at the right time within a hospital setting. There's a zero sum gain in relation to that. Well, there's always a need for every board to plan the beds they require on a short term and a long term and they've got a tool to be able to do that. So they need to make sure that for their share of those 300, well it'll be the 385 minus 112, the 200 odd people who would every year be requiring to remain in hospital. And each health board will plan for that but it's relatively small numbers and they're able to do that and to ensure that there's appropriate care. But people who are already under those arrangements will not be affected at all. I understand that. The other thing I think going forward, I mean I support the equity argument and not charging them in the suggestion that we charge for accommodation costs in hospitals. Ludacris, we just don't go there. The NHS is too important for that but we do have a different situation in the social care sector. Obviously now as we develop health and social care integration, as the system develops we may have increased capacity to deliver clinical care and a setting out with hospitals going forward. And I'm just wondering as the system evolves will the Scottish Government take cognisance of that to refresh and to review and to update these guidelines. Because we have such, we have patients such as like in terms of delayed discharge, we have stepped down beds now. So in terms of if the expertise and the capacity develops at a local area where effectively it's clinical needs that have been met elsewhere rather than social care needs. But we can do that in a more homely system, in a more homely setting. Would the Scottish Government at some point review the implementation of these guidelines over whether it's one year, two years, three years, whatever that number would be Cabinet Secretary. Just to make sure what we're taking cognisance of the developments and the increasing clinical care capacity within a more social care environment rather than a traditional hospital setting. Well, as I indicated earlier on, I'd be happy to do that. We can pick up a fixed point in time whether a year might allow us to have a bit more experience of the new system. Very happy to do that. You hit on an important point though that this is within a very much a changing environment where intermediate care and step up, step down beds, whatever you want to call them, are very much a growing area. And of course for that model, which is a short stay of around four, six, eight weeks time, there should be no charging for that either because essentially that is an assessment of someone going home. So again, those beds provide an additional mechanism to help keep people out of acute beds or indeed get people home when they're clinically ready for discharge from hospital. But they might need a bit more rehabilitation. They might need some aids and adaptations back home before they get home. It provides a very important part of the system and we really want to see more of that capacity growing across Scotland. Okay, I'll be interested to see how any review would be taken forward. I'm just trying to think of the medium term Cabinet Secretary where you could in theory have clinical care units co-located with social care settings. There will be issues in relation to all the resources on site that you would need to do that, but it's just in terms of making sure that Scotland takes cognisance of evolving patterns of clinical and social care delivery. But I appreciate your answer. A couple of general questions following on the questions that we've had. I mean, in the term, I think the committee has taken lots of evidence. We've been involved probably in case work. Where you've got an assessment, social work or clinical, you're going to have disputes and complaints and whatever about it. I think it was an issue that the committee focused on in some of this. It's very controversial when somebody's making a judgement about somebody's condition alongside the family. What's appropriate? And if you add into that mix, if financial costs, I don't know whether the system that's completely within the health board actually addresses some of the... Given some of the other evidence that we have taken about local authorities making those decisions. Andy did health board with allocation, new drugs and innovation and things like that, but where he got access to these things. There is a board there who have a financial envelope and that can bear down on the independence of decisions that are making. I don't know where you've considered that and how you would look to ensure the greatest of independence within that system. The other question, I suppose, I accept in the scheme of the health service budget that £3 million of a saving is nothing that would drive you on making decisions in any short. But it would be interesting to know where the £3 million saving comes from. Is that from the reduced number of beds? But finally, now that this thing is shut down, I'm just looking to my pavers. The review group, and I'm reading from this note in brief that we had, the review group in 5.8.2 recognises that the current situation in Scotland in which all those individuals aged over 65 are eligible for free personal and nursing care is unfair and inequitable. The view was also expressed by some voluntary organisations who voiced concerns that the provision of free personal care and nursing care is based on age rather than a clinical need and that at the heart is not correct. The panel believes, therefore, your review panel that made these recommendations, believes that there is inequity in the funding of personal and nursing care needs for individuals under the age of 65. The new guidance doesn't mention extending free personal care to under 65s, although you mentioned this in a view. Given that strong statement, why are we delaying on that recommendation and pushing forward with the others? Okay, I'll come back to that in a second. Just on the dispute mechanism, I accept that there will undoubtedly, as there was under the previous system, disagreements. The process that was recommended by the independent review was that that resolution should remain within the board, so there should be a second opinion. There should then be a case to the medical director to look at it all from a clinical perspective. But ultimately, the ombudsman is there as a backstop of an independent look at whether the decisions are right or whether the ombudsman would have concerns about them. I think that's the area as part of a look back over maybe 12 months, we'd probably want to keep a look out and monitor as part of that. You're talking to the committee that took evidence on access to new drugs and medicines, and you're saying that the medical directors and whatever, we've took extensive evidence on that, so it's going to be hard to convince us that that would happen. The ombudsman has understood that there is no power to direct action on the health board, so if that was, rather than the ombudsman being there, everybody is right when they come up against a decision they don't like in public, so they can go to the ombudsman, but we know from our case what you probably do as well, the ombudsman has no powers to direct a health board or indeed other than apply to whether the procedures that are in place are a tier two, not in a clinical decision. So I don't know whether that's something we need to reflect on. We can never agree with it, we can't ever, there will always be disputes, but if you've not got a final arbiter that's seen as somewhat independent and that can give direction or recommendations that can change something, I think there's a big weakness there, I'm not saying it's wrong or right, but I'm suggesting there's a significant weakness in that appeals procedure. Okay, I'm not sure whether I'll be able to convince you otherwise, but the ombudsman's recommendations and decisions and comments on cases is listened to by boards don't ignore that because it's a very public thing to have the ombudsman find against a board. However, as a Scottish Government we have a role as well to make sure that we keep monitoring that element of it and I can certainly give an undertaking to do so and something we could capture after 12 month review. The issue of the under 65s, we, as you rightly said, are looking at that. We have been discussing with COSLA for some time, we're doing some modelling around, I mean the biggest area of this of course is care at home. The numbers of people affected in a care home setting who are under 65 are actually very small as some of the figures I saw was, I think it was a 3% of the folk who are under 65 who would be self funders and I think that amounted to about 90 people. So it's a relatively small number of people but nevertheless it's something that we are looking at but we are doing some modelling and some work. It is a complex area in terms of how you would do it because obviously there's various campaigns that have been calling for various groups to be exempt and for elements of free personal nursing care for under 65s to be looked at and we are looking at that in a proper review process with COSLA and we will come to conclusions about that once that's come. I'm very happy to keep the committee informed of that. I know there's a lot of interest in it. What stage are we at with those discussions? We're dealing with something here, you're moving on, where there's a recommendation that this one is. So there's a wee spur on here from people set up to look at this issue and arising from that I can understand it's broader. So where are we at the stage of discussion with COSLA? When are they likely to conclude? We've got some finance modelling research underway and we'll wait to get that back to see what that tells us. I was looking for a time scale. Obviously we want to do that in a short time period as possible. I'm not going to put a firm date on it. Cabinet Secretary, you know you can trust us, whisper it to us. Obviously I'm not looking for a drop dead date but obviously do I take from that that financial modelling is in the very early stages or is it into the process? What's the direction of the table from the Government? Do you accept the recommendation that this is unequitable and needs to be dealt with? Well, it's not just the review that's said that. There are obviously a number of bodies and organisations, campaign groups, individuals who have all said something very similar. It's more complex because it's not just about the current numbers of people who, if they were eligible, wouldn't have to pay or who are under 65. It's also looking at what the demand would then be. That's why financial modelling is important to look at the current level of need and demand, but then to project that into the future. I want to make sure that we've put all of that into a proper order as we take forward discussions about what is affordable and what can be delivered. But I certainly take on board what the review has said. Brian, you were going to come in around the £3 million savings that the Cabinet Secretary mentioned. That estimate is based on the 100 new people that would come in. If the old eligibility continued, we would estimate the 112 people that would be coming into the system that would be cared for in care homes. The NHS, excuse me, would pay the entire cost of that care, so it would be around about £600 a week. So a very rough estimate, it's 112 times 600 times 52 comes to just over £3 million. Now that's not a saving as such because there will be some of those costs. Most of those costs indeed will be picked up by the new integration joint boards. We're not talking about resource transfers to local authorities, we are talking about the single pool budget of the IJBs. So much of that will be transferring, the cost of that will transfer to the IJB. The balance of any saving will be reinvested by the IJBs and caring for more people at home. So making provision for the under 65 would result in a cost transfer to local government of what? He did the same for under 65s. There's very few of those people, very few of the under 65s are actually in care homes. Have you extended that? Of the cost room. Well I worked out that there was about 90 people but of course many of them will be entitled to DLA and PIP, so I think we'd need to look at that in a bit more detail. So there's no costings being worked out about, as I mentioned earlier, dealing with the free personal care for under 65s. That's been caught up with the other review, it's not being done under this work. So the work that's been done here has been around the modelling of those who were eligible under the previous guidance and the new guidance. We've not looked at the under 65s under this because that's been captured by the work in financial modelling that's been done elsewhere and that's not concluded as yet. Anyone else? Any other questions? Richard? Sorry if I irritate Mr Doris with my questions but I do want to get things quite clear in my own mind. I think I may be confusing incidents and prevalence in that you've talked about this figure of 100 a year but of course they will not be replaced every year. So if you have 100 a year that's the instance, 100 new cases a year, but the prevalence are the numbers that are actually going to be involved permanently or over a period of time and that number at the current moment is 385 as I understand it. So I think that we need to understand that there are, when you talk about a very small number of 100, I think it is the prevalence would demonstrate that it is considerably more than that. I could just explain about the numbers there. We've asked ISD to come up with these estimates for us based on the census information that they collect and you're quite right, it's 385 people currently in care. Now the turnover rate is between 30% and 34%. Now clearly the continuing care numbers have been coming down for the last seven years. Roughly 30% of people are new on each census and 34% of people come off that census at each point. It's based on that to work out in the next year how many new people would have been eligible and would have gone into care under the new system. So I'm right, it is incidents that we're talking about. It's the new cases on 111, but not the permanent census cases. I mean I know the census data is also questionable because it's done on one day a year so I know that was questioned by the review report. Can I just ask one final question from me and that is also trying to understand what we've talked about in the past under the CEL 62008 about category B patients and category A patients and really all the discussion we've had today, as I understand it, is about category A patients. So can I get some clarity around category B patients and code 9 patients because they are also a group that are of considerable importance. They are occupying 10,000 occupied bed days in any given month. That's 120,000 bed days occupied a year under the code 9 category. All right, if I start with the code 9s. Can you just give an explanation of what what? A, B and code 9, just for the record, thank you very much. Category A is people, so we're talking in the last seven years that we've done the census. The category A people are people who are in hospital who are eligible under the NHS continuing healthcare criteria, the previous criteria. We also asked ISD to capture information on people who have been in hospital for more than 12 months who do not meet the eligibility criteria and who are not delayed discharges. So they are not clinically ready for discharge but they're not NHS continuing care. Over the last it generally runs at around 500 people. Now they could be in hospital for any number of good and valid reasons. That's category N, category B. The code 9 are delayed discharges but they are delayed discharges that are out with the immediate control of either the NHS board or the local authority to discharge them within the agreed discharge timescales which in the past has been two weeks. Before that it was four weeks and six weeks. The code 9s are predominantly adults within capacity cases who have come into hospital for whatever emergency reason and it has been deemed that they lack capacity to make their decisions. Now if the family are in agreement the discharge can take place as it routinely should. If there is disagreement then a guardianship order needs to be applied for and it needs to be done through the sheriff's courts and it's a very time consuming process. It can take anything from three months to 12 months. So that's the main body of code 9s. There are also a number of code 9 patients who are delayed in hospitals because the specialist facilities that it has been agreed that they need just simply do not exist in the community. Now it may be that within the category Bs there's an element of those who shouldn't be in hospital. We don't exactly know that because they're not clinically ready for discharge so the doctors have not decided that they are clinically ready to leave. So that is something that needs to be looked at. They will be in hospital for valid reasons. It may be long term rehabilitation. We don't break that down by reason as such. But they will be captured within the revised data that we are planning to collect which almost brings the two together that captures anybody in hospital who is in hospital for more than six months. We will start to collect that data. And again on a snapshot basis it's not ideal. I would agree with Dr Sims that it's not an ideal way to do it until we have absolute real-time data on everybody in hospital. It's about the only way we can capture that. So we will capture that in line with the recommendation of the review. We also have some work underway to see how we can speed up the adults with incapacity issue because there is obviously a delay in the court so we're trying to understand what part of the process is the delay. Is there something around the role of mental health assessment and so on? So we're looking at what more we can do to try and make that process a bit quicker. That's very welcome, Inran. I had experience with one patient with alcohol-related brain damage where we moved him from the acute sector where he was extremely expensive resources but wasn't doing him any good into an alcohol unit waiting a guardianship order but it then took six months and cost £60,000 waiting for that order. So I'm very much welcome what the Cabinet Secretary is saying but I just wanted to illustrate that I think this is a highly complex area. England hasn't got it right. I'm not convinced yet that we've got it right. I very much welcome the Cabinet Secretary's agreement to review within a year because I think we need to look at it very closely because one of the things Mr Slater said that was important there was if the specialist resources exist in the community someone will be moved into that and will have to pay for it. If they don't exist then they will be kept in the health service and they won't have to pay for it. So we actually will always have some degree of inequity and solving that will be a significant task for the Cabinet Secretary. Paul, thanks. Can I apologise to my colleague Dr Simpson? There's many words of abuse to describe him. An irritant doesn't spring immediately to mind but I did want to follow up on some of the questioning from our convener in relation to dispute resolution and obviously the most obvious way for dispute resolution if a patient or a family disagrees with the clinical opinion is there's a normal routine right to a second opinion or a second clinical opinion is part of any process. So I'm just wondering, I don't expect you necessarily to have the figures at your hand just now but how routinely does that happen? How confident do patients and families feel they are in asking for a second opinion? And when we do that of course we'd want to make sure it wasn't another clinician within the same clinical team because there could be a conflict there. If the senior clinician has said this person is good to go it's quite a big thing for the junior clinician to then say well actually I've reviewed this case, I actually think they're not good to go. So it's just some thought about when this does eventually go well hopefully it doesn't go to ombusments in the light and this just works but it's just a bit more nuanced approach to how we build capacity and advocacy if you like with individuals and families to ask for that clinical second opinion maybe as we go forward that might become more important. I'm very clear that patients and families should be made aware of that as being part of the process and we'll make sure that that happens because I do think that should be laid out from the start and actually the whole process of second opinion medical director and then ombusment beyond that. I mean I think, I'm not sure Brian, is there absolute guidance around it shouldn't be part of the clinical? Best practice would suggest that that should be the case but that's something we can take up and make sure that in practice there's distance between the first and second clinical decision making. Absolutely in the guidance are entitled to a second opinion and that has to be from a competent medical professional obviously in the same way as any other clinical decision any other clinical decision not just about eligibility for hospital-based complex clinical care people are entitled to a second opinion. The panel was very clear they spoke to key stakeholders with a view to should this be that it should be somebody from another health board for example and they were very clear that they shouldn't because basically in a very small country health professionals know each other health professionals from another board they're all going to know each other it should be contained within that same health board but I take your point about immediate teams and a junior doctor not overthrowing a senior doctor. We'll take that up and we'll make sure that that's understood in terms of practice so we can issue that as a letter or something. Maybe just a cultural and a coincidence thing amongst the medical profession because of course it could be a fine judgement call about clinical needs conserved in hospital or capacity within the community and where there is that grey area and there's clinician disagreement erring in the side of caution and using the hospital bed for that full clinical support network would seem to make sense but it would need to be done in a way that isn't seen to undermine a senior clinician within the same environment and we'll take that back Rhoda, do you have a more question? Just on the appeals mechanism it seems to me that you have a clinical decision you can get a second opinion and then you go to the medical director all of those people given that opinion would be employees of the one NHS board so if there was a conflict between funding and it was used as a cost saving exercise to move somebody out the ombudsman can not look at the clinical decision making only that the NHS board followed the complaints process correctly so there is no independent opinion other than that without a financial burden attached to it and how do you sort that out to make sure that it is looked at above suspicion of financial saving? The reality is there is no big cost saving here so the driver behind that is not there and it's very clear in the guidance that the decision making is clinical decision making and they must absolutely in fact the guidance is very clear on this take no account of any financial considerations I actually think clinicians will part of their duty in that regard is to look at the needs of the patient and actually I think I would have full confidence that that is exactly what they will do and they will not be looking at any other considerations because the guidance is very clear that they should not so that's why it's in the guidance that it's absolutely a clinical decision no other consideration should be made and as I say part of the review 12 months down line we can check and probe that to make sure and reassure ourselves that there are no other issues being brought in but the guidance couldn't be clearer on that Do you check and probe it because it's not ombudsman cannot do that because they can't make a decision based on a clinical judgement they can't assess the decision made on a clinical judgement so it's natural justice it's not only being fair we hope that people would use the guidance properly but it's also about being seen to be fair well we could look for example of a sample of those cases that were asked for a second opinion or went to the medical director and to look whether there was anything different in terms of the way that those decisions were made in terms of the outcome that would be different from elsewhere that anyone I think if there was something that would stand out as a case that people would be thinking well that it's very strange to think that that person well although it would be very difficult to say that someone actually couldn't be cared for in hospital there was actually they couldn't be cared for anywhere else in the community and had to be cared for in hospital for that decision to be made in a different way the clinician would have to be thinking so where is this person going to be cared for but again decisions that looked that they were out of kilter if you like then we could certainly look at those cases and perhaps do a sample of the ones that went to second and medical director opinion but you know the guidance is very very strong in this regard that it is absolutely a clinical decision and given as we've already said on a number of occasions there isn't a big cost saving here to the NHS that money is then plowed back into integrated resources so it's not as if a health board is going to make a saving that it can set against financial pressures elsewhere it's not, it's not going to operate like that so you want to say just to also emphasise within that clinical decision it's a multi-disciplinary assessment so clearly the sort of expertise of caring for people in the community has a big say in that and you would think that if the multi-disciplinary team who are experts in community care are saying actually we cannot care for this person in their own home or we cannot care for that person in the care home then that clinical decision is going to be influenced by that and that will affect the judgement of whether somebody can be in a hospital or not also it's reasonable to say that all the continuing care funding at the moment the specialties that these people are in are amongst the delegated functions so the funding for all the patients whether they be in care homes whether they be in hospital at the moment will be delegated to the IJBs just to emphasise this we are not talking about transferring of money here from one statutory body to another it will all fall under the chief officers remit to make decisions on that budget Is there any other questions from the committee? If there isn't can I thank you cabinet secretary for your attendance here today and for your colleagues thank you very much health and sport committees business for today thank you