 Fy roi'r ddiwyddo, iawn, a fwygoi'r tîm ni i gyd yn dwyllgor 15 ym Llyfrgell hon yn y Gwyl Llyfrgell. Fy roi'r ddweud yn fwygoi'r ddwyddo i dwyloch i gyd yn dod o gweithio'r ddysgu'r gwyllach o'r cyflwynoion, roedd yn cymdeithasol o'r teulu'r gweithio'r cylliddon o'r gwyllach oedd yn defnyddio'r gwyllach o'r ddweud o'r cyflwyno o'r ddweud o'r cyflwyno o'r cyflwyno o'r ond ei gwaith i'r sydd wedi gweithio'r cwmaintau iawn, neu dogsianiau ar gyfer gweithio'r cwmaintau yn gyntafol o'r ddegwn i'r adethau rydym yn eu试onion. Cllwg Llywydd, Fel Llywydd, i chi rydw i. Fy enw i chi dda nhw ddweud â'r hynny, rwy'n gyfrifaseng iogi ac wrth ei dweud fynd yw ddulliannidau, dweud â'r holl mwyndau ac ei ddawn i gael yn meryngrifatиссiee. Rydym yn ei ddechrau, convener. Rydw i'n glifio i'r cafgolwch am ddechrau ddechrau ddechrau a chyfeiddeidag i'r anghydfeydd ddigwyddol yn blynyddu yn cyfleidau. I want to start by recognising that this is a sensitive subject. We are talking about how we care for people at the end of their lives and we will therefore treat the committee's questions sensitively and if there is anything that we do not know but can provide, we will certainly do so as quickly as possible in order to assist the committee. I also want to recognise that the end of life care is not only provided by the national health service and we greatly welcome the contribution of partner organisations, voluntary services and others from which many have benefited and I do want to recognise that. It is a key dimension of high quality care and services for people in Scotland who have progressive and curable conditions. A review by Audit Scotland in 2008 highlighted several areas where focused action and improvement was required and the publication in 2008 of the Living and Dying Well action plan provided everyone working in this area with a clear description of the changes that were required. Several improvements in education, national information systems, a single national policy for decision making on resuscitation and development of a set of national indicators. Those were among some of the significant developments as a result and those were reflected in progress reports published in 2011 and 2012. We now have plans that are progressing to publish a new strategic framework and that will guide and focus us in relation to the actions that will be needed to sustain changes made and to accelerate the pace and scale of improvement where that is needed. The quality strategy measurement framework included a measure of the percentage of people spending six months at the end of life at home. Those data have shown increases over time but those increases are small. Those data are now reported by hospital, health board and across deprivation categories and we expect our strategic framework for action to outline the future requirements for an enhanced measurement framework. We believe that this is important to support improvement. Increasing numbers of people's palliative care needs are now recognised and recorded on registers held by GP surgeries. There were 7,703 palliative care needs recorded in 2008-9 and that has risen to 12,050 in 2013-14. There have also been significant increases in the numbers of specialist palliative care nurses and doctors working in NHS Scotland over recent years and we now have a single nationally agreed set of clinical guidelines for palliative care. We have learned from the successes of our national safety and person-centred improvement programmes and we have a new advisory group in place with more effective links with GP's hospice chief executives, nurses, palliative care specialists and the leadership of NHS boards, local authorities and national scrutiny and improvement organisations. Just in closing, convener, I want to mention the meeting that some of us had with Kate Granger and her husband earlier this year. Some of you or all of you will be familiar with the Hello My Name Is programme, which Kate has set on with her husband. She describes herself as a wife, a daughter, a sister, a friend, a doctor and a terminally ill cancer patient. Listening to Kate and her husband speak passionately about their campaign to improve the patient experience in hospital through getting the clinician and patient introduction right was hugely important to me. It was one of the most important discussions that I have been part of since I took on this role and I believe that it is important that we work collectively to continue to build on what we have done over the past few years and to drive further improvement and I welcome the committee's inquiry to that end. Okay, Mr Gray, thank you very much for those opening remarks. Can we move straight to questions now and can I ask Rhoda Grant MSP to ask the first question? Can I ask what pathway has now been provided for palliative care? It used to be that the Liverpool care pathway was used and then I think because it was misused, people pulled back and away from that. My understanding, there was a bit of a gulf then about care and treatment. Do we have a recognised pathway for palliative care and is that in use? Thank you. You are right to say that we ceased the use of the Liverpool care pathway and we gave boards time to do that by the end of 2014 and in fact I checked with Professor White last night to make sure that we had ceased that because, as you say, there were times when it was not appropriate. Professor White will be able to give you more detail of what we have in place now. I have brought Greg and Janice because they are the experts in this field, so I will turn a number of the questions to them if that is all right with the committee. In relation to the phasing out of the Liverpool care pathway, we convened a group of clinicians to provide advice on replacements for the Liverpool care pathway. The advice that we received was that what was needed was national guidance around care in the last days and hours of life, focused around four principles. Those principles are about informing and having timely and sensitive communication with people at the end of life, ensuring that significant decisions involve all aspects of the care team that the focus is not only on physical care but on psychological, social and spiritual care and that the wellbeing of relatives and carers was factored in to that care planning. The decision that was taken was in relation to not introducing a national pathway, because one of the pieces of learning from the Liverpool care pathway review was the need for teams to be able to tailor their local care processes to local systems and local care facilities. Therefore, our guidance provides a framework for local boards and partner organisations to develop their own local approaches. We have created a national mechanism for organisations to share their particular resources. We have the national guidance, which was published in December 2014. Through our national infrastructure, we are supporting people to share what works well, because one of the problems was not being able to tailor particular care delivery to local circumstance. Can you give me an example of where it was not possible to tailor it to local circumstances? There are two examples that come to mind. Colleagues in NHS Grampian developed a particular approach to care planning for palliative and end-of-life care, which they advised us provided greater levels of flexibility and were less constrained by some of the aspects of the pathway concept. There are also some examples in NHS Forth Valley that would certainly be happy to pass the committee the work that colleagues in those two boards have been doing around the replacement, if that would be helpful. That would be helpful. I suppose that my concern is that, if there is not a nationally recognised standard of care, we end up with the postcode lottery where there is an awful lot of flexibility and, depending on where you live, you may have excellent care at the end of life. If it is flexible, if circumstances do not allow or it is difficult to provide, you do not get it at all, which seems to happen quite a lot. My concern is that, if there is not something there that says, this is what people should have, this is the standard of care that people should have at this point in their lives, they may not get the care. How do you monitor, check and make sure that best practice is available to everybody? The guidance and the statement that was issued in December 2014 make it very clear in terms of what good quality care looks like around the four principles that I mentioned. We expect NHS boards to use that as part of their local assurance mechanisms in terms of monitoring the quality of care through their on-going improvement and governance mechanisms. The monitoring around quality would be something that the local teams would be designing into their processes. It might be helpful to Ms Grant and to the committee to know that the group that Professor White referred to has met twice already in November of last year and February of this year. It will meet again on 19 May on 27 August and on 3 December this year. One aspect of the group is that it is supported by a stakeholder group that consists of representatives from third sector organisations, policy makers, senior NHS staff, front line NHS and service users and carers. We would expect through that group to get feedback on the efficacy of the implementation of the guidelines that Professor White has referred to. I take the point that you are making on behalf of the committee that it is important that we maintain focus on ensuring that the guidelines are implemented and that what we are interested in is consistency of outcome. We are not imposing a single approach across Scotland. Apart from anything else, there is clear evidence that, in more remote and rural areas, services are delivered differently and are delivered in ways that best meet the needs of the populations in those areas. It would be wrong of us to say that what works in Glasgow should work in Rossshire, but we are alert to the point that the committee is making about the need for consistency of outcome. It is quite clear that, regardless of where you live, you should still have the same experience of a high-quality service and support for yourself and your loved ones at that stage in your life. My concern is that there does not appear to be a way of monitoring that outcome and I agree that it should be on outcomes rather than on how that is delivered. Obviously, if you have fewer staff and people will get involved in delivering care that they may not get involved in delivering in a more urban area where you have more of a breakdown of staff and resources. However, the person should not notice the difference. They should feel supported and cared for and uncomfortable in their last days. What we seem to be getting back from organisations such as Maricuria depends very much on your condition and what kind of palliative care you get. We surely should be aspiring that everybody at the end of life should have the same quality of treatment and care. I accept that. Professor White could perhaps say a little more about how we will assure ourselves over time that the standards are being applied appropriately in all areas. One of the areas in the strategic framework for action that needs some further focus conversation is how best to capture the complex aspect of care. As the committee is aware from its previous work, palliation and palliative care are a dimension of care. It is not always a service as such, although it is clearly specialist. Palliative care is a service. We recognise the need to have discussions with all the various groups that Paul mentioned. It is a tricky issue around how you capture a fairly complex set of outcomes spanning, as I mentioned earlier, the quality of life, physical, social and psychological outcomes. On the range of conditions, we have been doing a lot of work to discuss with colleagues working in areas such as stroke, heart failure and dementia, to make sure that they are included so that we can capture the outcomes across a wide range of conditions and again sharing some of the learning from some of the work that has been taking place. To reassure the committee that it will be a central element of the strategic framework, we need to improve our ability to describe the quality of care and the consistency of care that is required. In terms of assurance and scrutiny, Janice and I have had discussions with colleagues in the care inspectorate and with Healthcare Improvement Scotland to make sure that some of the standards and the guidance that I mentioned around the end of life care is included in the existing programmes around older people in acute hospitals and in the care inspectorate's working care homes. Again, we are trying to embed this in a whole range of activities so that we get a comprehensive national picture across different providers. Can I just ask a brief follow-up question? You mentioned the care inspectorate and care homes, so when there is a standard inspection of a care home for older people, do you always measure first of all, do you do a mapping exercise? Could there be an elderly person who has not been screened as needing palliative care, who is actually in that care home, so they actually identify from the cohort in a care home whether someone has palliative care needs and whether they have been identified properly and whether they have been met and do you inspect on that? The care inspectorate has very well developed resources for care homes at the issue in advance of the self-assessment and inspection process, which prompts them to consider all the issues that you have mentioned. We would be happy to provide the committee with copies of those documents that were developed after the living and dying well recommendations. The care inspectorate collects data of the sort that you mentioned. They particularly have focused their work in the past few years around whether people in care homes have an anticipated care plan in terms of mentioning what their needs might be in relation to end-of-life care. We have noticed that in the data that they collect in 2012, 38 per cent of people had the anticipated care plan. It is a modest increase, but nevertheless, in 2013, 46 per cent of people who they reviewed in their inspection programme in care homes had an anticipated care plan. There is some really encouraging measurement and processes that we want to build and improve on in the future. I think that that is helpful. Thank you for sharing that. Dennis Robertson, for our next question. Thank you very much, convener, and good morning. First of all, I have witnessed the experience of the palliative care within the Grampian, especially at Roxburgh House, with David Carroll. If there had to be an example of something working, that was something that I felt was working extremely well, not just on behalf of the patient, but on the family and carers of the patient, and also in recognising the staff and their particular needs. It was a very holistic approach, and I was very much impressed with the work that was going on in Grampian. However, if we are looking at the Government's strategy in the living and dying well, there are still a few questions that I am not entirely convinced that we are making maybe as much progress as we perhaps could be. That is moving from the acute to the primary care sector and the integration of health and social care. Are you satisfied that we have the mechanism there so that we can measure what is happening within the primary care sector? Are we satisfied that GPs and specialist nurses are identifying the patients that require palliative care at the time of need, rather than much later down in their condition? Dr Carroll is a member of our national advisory group. Unlike you, we have benefited from learning from colleagues in Grampian. Interestingly, NHS Grampian was one of the organisations that did not use the Liverpool care pathway and had their own localised approach, which is again where we have looked at some of the learning and the positive impacts that have been described. In terms of integration with health and social care, as the committee will be aware, integrated joint boards are responsible for palliative care within hospitals and in community settings. The set of indicators that have been published for integrated joint boards in health and social care include measurements around some of those issues in relation to palliative and end-of-life care decisions. Mr Gray mentioned the increase of people registers in palliative care registers. One of the themes in looking at some of the data are that there have been increases, but they are modest around some of those measures. Again, if you look at the data from GP practices around the people with non-malignant disease, so diseases other than cancer, there are increases in the numbers of people going on to palliative care registers but not the sorts of increases that we want to see as we accelerate the increase in scale-up changes. People are being identified but not as many as we would like. In terms of what can be done to ensure that we are capturing those that require palliative care, come on to the register at that time of early need. One of the things that we have been looking at is captured nicely in a report by the General Medical Council in 2014. It published an annual state of medical education and practice report. Last year's report mentioned that end-of-life care was one of the most challenging aspects in medical practice, and the GMC received a large number of questions from doctors about this area. They noted that even experienced doctors say that they sometimes lacked support or confidence in skills needed to effectively communicate some of those issues. We think that one of the key areas for improvement is to support not just doctors but all members of the care team to initiate conversations with people with a wide range of conditions and to feel confident and supported to do so. Education and training is going to be a key dimension of future work, and we believe that that will improve things. In relation to your question about primary care, it is worth mentioning to the committee that there is a national review of primary care out of our services that is being led by Professor Lewis Ritchie. There is one of the task groups for that, which is chaired by the medical director of NHS Tayside and co-chaired by the Royal College of Nursing, associate director for Scotland, will explore a range of groups that are identified as vulnerable, including those with palliative care needs. Sir Lewis has met the palliative care policy team in Scottish Government and attended the recent palliative care cross-party group hosted in Parliament on 15 March, so it was to reassure the committee that the issue is being taken very seriously indeed. Also, in the interests of being transparent with the committee, we are not here to suggest to the committee that we have got this absolutely right. The reason why we are doing all this is because we believe that we can improve, and therefore the assistance of the committee in this review will be helpful to us. We believe that we are doing a lot that is good that it could be spread more widely, but we also know that there is room for improvement, and we just want to acknowledge that. Just on that very point, Mr Gray, I am just wondering, are we able to identify on a national basis areas in which we believe that we need to improve that resource and education, whether that is an urban or rural type setting? Are we able to deploy the appropriate resources to try to redress that balance? I will come to Professor White in a second. One of the things that I have been discussing with senior representatives of general practice is the importance of ensuring that appropriate resources are devoted to that area. I am not going to suggest that we have a complete answer to that, but general practice, primary care, is an absolutely central resource in palliative care. A GP is very well placed to have the kind of conversation with people who are coming towards the end of their lives with their families, because the GP is generally speaking familiar with the individual and their families. One of the things that I would like to draw to the committee's attention is that one of the issues that we are trying to tackle here is the willingness of individuals and families to have those conversations at the right time. That is in no sense a criticism of patients and families in no sense at all, but we need to provide a space in which they can have that conversation comfortably. To be frank about it, some people are more comfortable with that conversation than others. It is up to us, I believe, with professional duty to ensure that that conversation can be had. General practice is a critical part of helping us to do that. I do not know whether Professor Wright wants to add anything on resources. We have our colleagues at NHS education for Scotland, who are represented on the national advisory group and are part of the work to develop the strategic framework for action. We have been asking them to look at what has worked well in terms of educational resources and what might be required in the future in order to ensure that there is a range of educational programmes that reach a range of professions across different teams. Highlighting the point earlier in terms of recognising that those issues span beyond cancer, our national improvement plan for stroke includes plans to roll out across the country some specific training resources around how best to assess and provide palliative care as a key dimension of care following a stroke. That is led by colleagues in NHS education for Scotland. When I had discussions with David Carroll in NHS Grampian, one of the things that he highlighted was that there are occasions when a patient and family have made the decision that the person would wish to die at home, but occasionally they may change their mind and wish to go to a hospice rather than a hospital. If that happened in the last—this was sort of intimated to me that if it was happened in the last few days—are we able to meet that request? Do you feel that we have the facility to then accommodate the last wishes or the wishes of the patient at that time? Professor White, perhaps? One of the things that we have been examining is some of the work that is being undertaken by hospices, both in relation to the way that they provide advice in the out-of-hours period and link with colleagues within hospitals and other services where there is a changing situation. The other thing that we have been looking at the learning from is some work around hospice at home. Particularly, it was also presented at the cross-party group that Mr Gray mentioned about working in Strathcarran hospice and in the Ayrshire hospice, around hospice at home and that greater flexibility to change arrangements, to deploy resources and have people either go into home or to plan for a change in care setting. Again, it is very much part of looking at where that is working in Scotland and working at why and trying to spread that learning and design it into the future system. That really follows on from Dennis Robertson's point about where people wish to die. They wish to die in different places for all sorts of reasons in my experience. I should declare my membership of Strathcarran hospice. I was a previous chair and found a member of the hospice, so that is an area of particular interest for me. One of the areas of concern for me in delivering hospice at home for those who wish to die at home is the provision of appropriate aids and equipment, because this is often quite short-term, but the need for, for example, one area is an appropriate bed, which is difficult, but nevertheless it can be provided. It might just be a mattress or a bed, but aids and equipment tends to be a rather slow process, and so the need for speed of someone wishing to die at home—I just wonder, first of all, if that is an area that you are particularly looking at in terms of the supply of aids and equipment to support the hospice at home concept? I have come to colleagues in a second. There is an important point there, Dr Simpson. The questioning of the committee is certainly causing me to reflect on not only the ability to meet the need quickly, but also to respond quickly to a change of choice. Both of those things are coming together, and I think that the flexibility and agility with which we can respond to that is absolutely critical. I do not know if you want to say more about the specifics of aids and equipment, because, as Dr Simpson says, it is not something that can wait a couple of weeks to be provided. Two points come to mind. As Dr Simpson will be aware, those are often the issues that come up when GP practices are reviewing things after someone has died, in terms of whether we did not get that on time or whether that has negatively impacted on the family's care experience or their bereavement reaction. We have been discussing how we can capture the learning from across the country in GP practices and link that with the strategic commissioning arrangements for integrated health and social care, in the plans that the integrated joint boards will be submitting. Although we have not specifically discussed equipment to date, it is something that we can flag as important in terms of having that responsive and flexible provision when needs change. One of the advantages of integration is that, as you know, sometimes it is health that has the equipment. Sometimes you have OT services in local authorities that have the equipment. One of the benefits of integration will be taking a look at the local provision and commissioning a service that can be responsive and change when it needs to. That is an interesting comment, because Fourth Valley integrated its services 25 years ago, but we heard three years ago that the committee was looking at health board provision and how it could look at efficiency savings. Tayside told us that they were about to merge their equipment, so let's hope that all boards are going to do that. I have another question. That is one of the four principles that are guiding you. Dr Simpson, just before you move on, I will give you another question. We call him here to supplement you on this specific question. Thanks very much indeed. It was very interesting talking about the care at home aspect of it, but there are difficulties with certain conditions, neurological conditions, hunting the disease, something like that. It is very difficult to do something like that from home in terms of one-to-one positioning with a carer, nurse or whatever, to the person with the condition. In terms of the neurological conditions and the care from home aspect that is coming in, I take it that there has to be some sort of plans to realise that it is not a one-size-fits-all and something somewhere within the plan would have to kick in to ensure that the people who this was inappropriate for would be available to those people who required it. So a key principle of anticipatory care planning would be that tailored individual conversation that takes account not only of the condition but the preferences of the person living with the condition. As I mentioned previously, the need to take account of the views of relatives and unpaid carers. In terms of when the priorities for funding come in, will there be some sort of acknowledgement within the funding generally when this is all being sorted out? It will not all be placed in one area to put a pressure on others, shall we say. I am trying to think of a better way of putting this, but it is just with the differences in those people who would definitely require a more focused, based palliative care setup than perhaps others. I guess that it relates to the point that we were discussing earlier in relation to making sure that palliative care as a dimension of high quality care is something that is considered across a wide range of conditions and that we improve our ability to describe how that is being provided across a wider range of conditions to provide the sort of assurances that would be required for everyone who needs that, that they receive it when they need it. It was only to, in relation to Mr Keir's question, perhaps to draw the committee's attention to the primary care direct enhanced service that came into effect here from 1 April 2012. I can provide as much detail as the committee wants. I will not do that orally for want of time, but just to give the headline that this direct enhanced service recognises that palliative and end-of-life care are integral aspects of the care that is delivered by any health or social care professional to those living and dying from any advanced, progressive or incurable condition. It is not just about the last month, days and hours of a person's life but about ensuring quality of life for patients and their families and carers at every stage of the disease process from diagnosis onwards. That is not condition specific. If you are concerned, Mr Keir, is that we may fund care in relation to some conditions but not others, what we are saying is through the direct enhanced service. We are looking across the range of conditions. I am not a clinician, but one thing that I have learned is that many people, when they are dying, they rarely just have one condition anyway. There may be one significant presenting condition but there will be other underlying comorbidities. It is important that the package of care is tailored to the individual, as Professor White says. We have provided some funding for that to ensure that there is progress. We have 54,000 deaths a year. Have we actually done an estimate of how many we are likely to qualify or need palliative care? If not, can we do so? We have 12,500 now on the GP register and that is great. That increases as part of days. It is really worthwhile. Where are we likely to be headed for in the long term? That will give us a clue as to what the situation is. I will come to Professor White in a second, Dr Simpson, but my reaction to that, and I was thinking about it yesterday as I was preparing for this, is that we would really want to be certain that anyone who dies in Scotland, as far as it is within our gift to do so, had available to them the care that they needed at the end of their lives. Some die by accident, some die suddenly. Clearly, that cannot be anticipated, but for those whose deaths we can reasonably anticipate, without giving a hostage to fortune, I would like to get as close to 100 per cent as we could. I think that that is what we ought to be aiming for. Some people may not, as I have said, want to engage in the conversation. That makes it harder. Some may not want anything. That is all right. That is a choice that individuals can make, but we should be doing our best to have the conversation with everyone, if we can. I do not know if Mike Wharton wanted any supplementary questions. I think that he did. I might ask you to hold your last point, because there is a stack of other committee members wishing to come in on other subjects, rather than asking three questions, but if there is a supplementary on that, Mike? Absolutely, and I am a wee bit disappointed in Mr Gray's answer to Dr Simpson, because I think that this gets to the nub of the question. It is surely possible for you to make some kind of estimate of a reasonable assumption of what would be required so that we could all put our hands in our hearts and say that it is not patchy, as Rhoda Grant has suggested, and that the opportunity of good, high-quality palliative care is there for all who might need it. Can you put a number on that? One of the things that I mentioned earlier that makes it challenging is that the World Health Organization defines palliative care as improving quality of life, preventing and relieving suffering and assessing and managing care across physical, psychological, social and spiritual needs. That should be a dimension of high-quality care for everyone. We are increasingly becoming aware of, as we talk to colleagues, as we know the numbers of people who are going to be living with dementia, we have good data around other conditions and are linked back to the plans around the strategic framework. We would expect to be able to start to describe and quantify with some sort of measurable aims, as the committee will know from some of our other improvement programmes. You start to get improvement when you have an aim, how much by when. We hope to start to develop aims that, by x date, why percent of people living with dementia, after a stroke, will be identified as having particular needs. We are absolutely committed to improving our ability to measure and present to this committee and others. It is something more definitive in terms of numbers of people. It is likely to take us some further time to get that right. We are keen and we expect to be in the strategic framework for action. However, one of the challenges is that it is like saying, how well are we providing psychological care across the NHS? Let me try and help you then. A charity wrote to me recently suggesting that 11,000 people in Scotland are suffering needlessly and that those people should be provided with palliative care and that is not happening currently. Would you agree with that statement? I agree with that without seeing the detail. There are 54,000 people dying in Scotland. At the moment, we know that 12,700 have a plan. There is a gap between 12,700 and 54,000. Of that 54,000, some will die suddenly, some will die by accident. There will be no opportunity for a conversation. Of that 54,000, some will die, one might say, of natural causes without the need for such a plan, but many will, in my view, ought to be placed in the position of having that conversation. To answer your question, I want to get as close as is reasonably possible to the 54,000. I am a little bit not here after denying Dr Simpson another question, but it was on the numbers that my question was going to be on Mike, so bear with me briefly. There has to surely some modelling work around that. I think that Mike makes a reasonable point. The problem is that he could have said 15,000, he could have said 8,000, he could have picked any number unless the Scottish Government has suitable modelling work. We can all just pick a number. Earlier on, I think that you gave a figure that said 7,703 people had registered palliative care needs in 2008-09, and it went up to 12,050 in 2013-14. Do you know, for example, is that just because we are getting better with an existing cohort who needed palliative care anyway, or we have an ageing population and more complex illnesses developing, so the burden is becoming greater also? Why is there that increase? Where should that number rest at? More importantly, the modelling work that sits behind that is the Scottish Government doing that modelling work, or are we leading it to the new integration boards? Who is pulling it together? I am being really naughty. I have a fourth question now, Richard. That also has to push into strategic commissioning, because that is about individual human beings getting the services that they need at the time that they need them. I do not want to have the discussion about arguing about the numbers. The reassurance that I want is that you are getting a grip on the numbers, and that will feed its weight into local strategic commissioning. I will say yes, and then I will let... No, genuinely. Absolutely fair point. It has to come in. If the integrated joint boards are irresponsible, it has to come into their commissioning plans. I entirely agree with that. I will also say yes to the fact that we need to understand that nationally. Although there is local delegation in terms of the delivery, we need to understand it nationally. Professor White will say a bit more. Professor Scott Murray at the University of Edinburgh has been undertaking some analysis around those figures in relation to the change in the palliative care registers, particularly around the conditions that people are living with. We have some historical data from the direct enhanced service that Paul mentioned and some data that is about to be published, which we would hope would influence the further conversations around how to make improvements. Going back to Mr Mackenzie's related point, the key point is that we want all the care processes in Scotland to identify needs at the point that the need emerges. I think that there is a real need to set some challenging improvement aims around that. We have some good mechanisms of identifying needs and some good work, but the measurement framework that needs to be in place has to set some bold aims around increasing the numbers of people that have a conversation and have their needs documented early on following diagnosis. I will not push it any further, other than to say that this is a scoping exercise for a future inquiry that we will have later on in the year. If my colleagues were to ask a similar question later on in the year, would you think that you would be in a position to say that in this health board area or in that integrated joint board, here is the modelling work that is being done currently to say that we need to have X more beds in hospices? We have to have Y more beds in care homes, we have to have Z more specialist professionals in this area. When do the numbers feed itself into structural change? I am not asking you to answer that question just now. It is a scoping exercise. Do you think that you are going to be in a position to answer those types of questions as our inquiry rolls out? We have data currently around the partnerships and variation in some of the figures in terms of numbers of bed days at the end of life, so the data framework that is in place to support integration would be able to answer some of those questions. In terms of the other issues, we are gathering examples of, for example, the financial resources, the saved bed days from hospice at home services, from teams that are looking at identifying palliative care needs in people living with liver disease. There are disparate sources of data that we are starting to bring together precisely because we realise that we need to try and improve our ability to describe the national picture. I thank you for that in the net. I notice that one of the priorities for implementation in the progress report on the strategy is the electronic palliative care summary. What progress has been made in ensuring the existing electronic systems, particularly the key information system, are able to effectively communicate a patient's end-of-life care goals and information in a way that supports their care in all acute and community settings. What plans, if any, are in place to ensure that the key information summary system can cope with the increasing clinical complexity of community-getting advanced care planning decisions, especially in emergency situations? That is an important point. I would like if the committee was content to write to you about that, because I asked yesterday for some more information on what we were doing. I had a cause to engage with someone recently over the availability of the key information summary to the ambulance service, which I know is planned and is being rolled out this year, but that prompted me to ask for some wider briefing on progress on e-health in this area. If it was helpful to the committee, I would rather not give you a patchy answer. I would like to write to the committee about that. I would be happy with that, because it has not been specifically raised with me by your palliative care organisation, and I would be quite interested in it. In terms of timing, convener, when would it be helpful to the committee to have that advice? I am actually turned to our clerks. I am not sure when the timetable for our enquiries is going to roll out. I think that it would be helpful if we had it by the summer recess. We will get to it before summer recess. That would be fine, so it will be at the end of June. One of the problems with your patchy data is the fact that we have all had a situation where friends, relations and so on have been diagnosed with cancer. However, to walk into the doctor for a normal routine discussion and find out that they are later tested for cancer, is that one of the problems that you are finding, to try to identify sections of where people are having this condition? Of course, that is one of the issues when a person approaches a GP or another qualified clinician with a presenting issue. It may turn out to be less serious or it may turn out to be more serious than the individual had anticipated. It is also important to stress that, if someone has cancer, they do not automatically die. In that sense, the need for palliative care may not be the first consideration there. However, if I have understood the point that you are making, we should be doing all that we can to ensure that, when a point is reached that the diagnosis is that the person is unlikely to survive the condition, then we ought to be ensuring that measures are put in place to have an anticipatory care plan and to have that discussion. I do not know if Professor White wants to follow up on that. Have I understood correctly the point that you are making? I had a situation where a friend of mine's mother actually was diagnosed with cancer, but he was told to have grown up for six months but lived for three years. I had a friend who was diagnosed in October of one year and died in April of the next year. There is a wide variation between some people who cope with it, live with it and get on with it, but unfortunately, people have a situation where they express situation into palliative care. That is the point that I was trying to qualify for. I think that that speaks directly to the issue of ensuring that the anticipatory care plan is tailored to the individual. We do not simply say that a person has this condition, therefore they are likely to survive for the next length of time, therefore this is what we will do. Every individual is different. As already mentioned, a person may have one major condition, but they may have other underlying conditions that affect the likelihood of their lifespan being long or short. That is where the input of the GP and other qualified medical practitioners is hugely important. Again, my main question is that we are told that we currently have no available data in the total spent provision of palliative care in the end of life because of the nature of the general situation, cross-cutting utilising many generic situations, but do we honestly know or can you tell us or are we trying to ascertain? Mike Mackenzie was on about that earlier on. Do we know what the current level of funding is required to fund palliative care and end-of-life care in Scotland? What is our future prediction because if we are looking at this, we need to know is there sufficient funding? Are people going to get the care that they deserve? What are you commissioning in regards to arrangements currently in place between NHS boards and independent hospitals in Scotland to do a wonderful job? We all know that we have all attended the different events, situations, mentioned all the cancer charities. We have all been along and trying to help them as much as possible. Are we physically tackling the problem in order through drugs to ensure that people live longer? Are we really facing up to the situation that, at some point, we will have to up the funding in regards to that if we do not have the correct data? Where are we? He was going to make an additional comment before Richard Lyle moved his discussion on auto, so Professor White, could you come in first? It was related to Mr Lyle's comment on conversations around prognosis and how long someone might live. There are some interesting data published in the New England Journal of Medicine in 2010, which showed that early consideration of palliative care and provision of palliative care, although people received less aggressive treatments because that was not their wish, they actually lived longer. There are complex relationships in relation to those discussions, but it is important to link that early consideration of palliative care with the more general outcomes of treatment decisions and lifespan. That study also showed that people were significantly less depressed if they had early access to palliative care. I may pick up on the funding. One of the issues that the committee knows is the distinction between palliative care as a general principle and a general dimension of care provided by everyone and specialist palliative care. We can describe the funding that goes to specialist palliative care services because those are dedicated. You have dedicated nurses and doctors. You have dedicated funding that goes from NHS boards to hospices. Boards are also able to describe the funding that they are allocating to palliative care initiatives. There is some wonderful work going on, for example, in NHS Lothian, in which they are able to describe the amount of money that they are investing to promote early identification across a range of conditions, to train their clinicians in having the conversation. Some of the challenges are that there are some teams who will not necessarily know what they are doing as palliative care, but they are focused on people's quality of life. They are having conversations about what they would like to happen, and they will not recognise that this bit of my care is palliative care. It is that challenge of allocating or describing resource to that more general provision. However, if it is helpful, we can provide the committee with some further information about boards and what they have been investing in. It was only to—I am sure that the committee remembers this—that you commissioned a NHS board budget survey. One of the questions that you asked was for an estimate of spending on palliative care services, as defined by the Scottish Partnership for Palliative Care, and to provide details of funding agreed by the board for hospices. Therefore, there will be information in preparation for the committee that should assist in that particular aspect of the inquiry. Richard Lyle, I am going to let you back in, but I need to ask you first, as it is specifically still on this, because Dennis Roberts has been waiting patiently for a supplementary on this. Yes, I can only see statistics from £267.59 million. What is it now? That is why we are awaiting the responses that the boards are giving on this particular issue, because I think that that will be the best way to determine this. We can provide more data, but, as Professor White has said, there are ranges of palliative care services provided by boards that do not define as palliative care. However, when the boards have completed their returns, I think that the committee will have the latest and most up-to-date evidence in front of it to help it with this consideration. It is fair to say that Richard Lyle has hit on an important point, because when we get that data in, we need to make sure that the data is gathered in a consistent way. One part of the country could show a low expenditure, but it is not capturing all the investment spent. Another part of the country could show significant expenditure, but it could mopping up everything that could be remotely counted as palliative care. How can the Scottish Government make sure that we can compare the different parts of the country? You are right to point out that there could be differences. There are no absolutes, but one of the things that we will be doing in the course of this year through the various groups that we have mentioned is to ensure that, as far as possible, there is consistency of definition. The other point that is worth making is that palliative care is not always a drug or an adaptation. Palliative care might be someone to talk to. We will absolutely understand the point that the committee is making, and we will make sure that, as far as possible, there is consistency. However, the GP talking to the patient, the practice nurse talking to the patient, is sometimes the palliative care that is needed. The prospects of every such conversation are always being recorded. Palliative care provided by voluntary sector partners, palliative care provided by friends, family, colleagues—all of those things come into the mix. From the standpoint of the NHS, we take the committee's point that, where we are providing it and it is so categorised, it ought to be consistent. I thank you, Mr Gray, and I thank a very patient, Dennis Robertson. Thank you, convener. Prior to Mr Lyle going on to the funding, it was an earlier response, Mr Gray, when you were really talking about the care plan for each individual patient and obviously its person centred, and that is to be commended. You mentioned, obviously, co-operability with many people coming towards the end of life. In respect of a patient having a capacity issue, so if they lose their capacity, what supports there for the family? The person may have had that early conversation and may have expressed a wish to die at home. However, because their capacity is perhaps through dementia, they may be saying something contrary to that first initial express wish. Do we have the support and, I suppose, the specialism to cope with people in that area, and to support the carers and families? One of the core elements of the GP contract is that practices are expected to have a protocol in place to identify carers, which is supporting and assisting with some of the scenarios that you mentioned. We have noted that the numbers of power of attorneys that are in place in Scotland have increased significantly over the past five years. That is one of the important areas whereby, if someone has made their wishes known before losing capacity and the power of attorneys in place, care teams are able to ensure that the person's wishes are reflected through dialogue with the power of attorney. Is that early conversation taking place when a person goes into a care home situation or any other situation to advise families and carers about power of attorney? I wonder if I could just answer on, in respect of anticipatory care planning, it is not a one-off element that is not a one-off discussion that is had. It should be something that is on-going and live throughout that patient-clinician interaction. A patient or a person can develop an anticipatory care plan in discussion with their clinician, but that needs to be revisited over time. Care planning is an active element of the care, checking that the plan is still current and consistent with an individual's condition. Aware of that aspect, all of the care planning is primarily through David Carroll. My concern is around the capacity situation. How do we ensure that the initial wishes that a person might have expressed are followed through in the event that they lose capacity? That the family might not, in terms of the power of attorney, might go down a different route. There are three situations in order to frame the response, Mr Robertson. Three situations I can anticipate the road out list be more. One is where there is a clear anticipatory care plan, where it is consistent with the wishes of the person made when they had capacity. Therefore, that is the simple situation that can be followed through. There is then the situation where the person has capacity, makes an anticipatory care plan, loses capacity and appears then to change their mind. That is a more difficult situation, because then that requires an assessment of whether the person's capacity is so diminished that the change of mind might be overlooked. Without going into individual cases, it is difficult to comment on how that might be handled. There is a third case in which the person's wishes may be known by the family, but there is no anticipatory care plan, and then the person again appears to change their mind. That again would require a conversation with the family, the relevant clinicians and, as far as the person was able, the individual concerned. However, there cannot be a straightforward answer to your question, Mr Robertson. Save to say that, in every case, the answer would be, as far as possible, a conversation involving all parties, recognising that the situation will arise. It is something that we would want to pick up in relation to Dr Milne's point about having that information available to all members of the team across all settings when there has been a change in care preference as part of the work on care information summaries. We had some interesting work in NHS Lothian around that point about teams being able to quickly access that sort of information in terms of providing care in accordance with a preference that might have changed and the importance of that. Clearly, clinicians needed to know where to go within the system to get the information about the decision to find out whether it has changed and to have that conversation. It is another key part of having the right information available for the teams. Five minutes left here this morning, thanks, Dennis. I had Mike's name down. I do not know if he is okay now. Just before I come to yourself, Richard, which I will do, Nanette Millen had indicated that she might wish back in. She wants to give you that option first. I did cut you off earlier. Dr Simpson, I suppose, we should let you in, yes? Dr Simpson? No, no. I mean, I will follow Nanette. Did you want a question, Nanette? Sorry. It was just a connection with going back to cancer drugs and patients who did not get cancer drugs. At the time, Scotland opted not to have a cancer drugs fund, first they had in England. It was my understanding that a number of people actually went from Scotland to England to access these sort of things. What is the Government able to do for people who did not get drugs at the end of life? Has that had any impact on palliative care and what has been done for it? I am aware of the changes that were made to the individual patient treatment requests system around patients where there were requests to boards for provision of certain drugs. I do not have the information in terms of the specific links to palliative care, but I am happy to provide you with that as follow-up in writing. It would be quite interesting just to know what actually happened. Thank you. Thank you very much. Are there two riches to close the session, Richard Simpson, first of all? Yes. One of the principles is that there should be a multidisciplinary discussion in creating an anticipatory care plan, but the other side of that coin is, and do we have in the guidance the fact that there should be a single named person that should be the point of contact? Certainly, in terms of my clinical experience, that should not necessarily be the GP, the nurse, the physio, the OT or anyone. It might even be one of the carers, but having a single person that co-ordinates what is often a very complex team—I have had cases where I have had up to 16 different individuals involved—and giving both the patient and a named person together a control over a situation where control is really psychologically very important. I wonder if that is in the guidance now quite clearly. One of the things that we now do at the national advisory group is start every meeting with a patient or relative story about care. One of the things that we have heard is that relatives are saying that sometimes they are taking that role of having to co-ordinate the different agencies, and that adds to care or burden. The guidance in relation to last days and hours of life emphasises the importance of families knowing which nurse or doctor is in charge of the care. In terms of the anticipatory care planning, I need to check with colleagues who are working on that, but I am happy to follow that up in terms of providing the committee with assurance that that principle around making sure who should be contacted is reflected in that work. I agree that it is crucial. It was simply to say in response to Dr Simpson that principle four of the guidance is that consideration is given to the wellbeing of relatives and carers attending the person. Do we very simple about it? Causing them to run around trying to co-ordinate something is not, in my view, giving due consideration to their wellbeing, so just to be very clear about that. Two comments. One comment is that this morning you have actually conveyed that none of us likes to discuss our death, how we are going to die or when we are going to die. None of us knows when we are going to die, but someone like myself made a will 20 years ago. My family knows how I want to be buried. My family knows how I want to be treated if I go into a care home. We all have situations where if some of our family or friends go into a care home and we are trying to get to power of attorney, it is very, very hard. But try talking to an 82-year-old or an 82-year-old as I had to do, more and more, father-in-law, and ask her how they wanted buried. They did not want to discuss it. I only discovered after one of them died how the other wished to be treated. However, we have to prepare. You said earlier, Paul, that you have prepared for today's meeting. Knowing you as I do, I am sure that you are starting to prepare for what this committee is looking at. What is the Scottish Government doing to prepare for the future in palliative care? What work are you actually doing just now? In the last two minutes of the committee session, tell me everything that the Scottish Government is doing in palliative care. Your time starts now. We are timing you now, but leave me some general comments. I think that I will keep it very brief. Again, we can ride to the committee in detail, but it is a very fair question. If you looked at the Scottish Government a couple of years ago, we would not have had a national clinical lead for palliative care, nor would we have had a senior policy officer for palliative care. We have put that resource in place to ensure that we have a co-ordinated approach. We have set up the groups that Professor White has described. We have invested in ensuring that the out-of-hours review led by Sir Lewis Ritchie is being briefed on the issues that are connected with the subject. I am happy to give a fuller account, but we are not simply talking about it, we are doing things about it and we are putting resource into it. One of the key things that Richard Lyle is pointing out is that the forthcoming choir that we have can feed into some of that work, which is what we are clearly hoping for. Time has now defeated us, but it might be worth pointing out at the end of this evidence session that, when scrutinising some other evidence a few months ago at the same round-table meeting, it was pointed out by professionals that Scotland's palliative care movement and provision is of a very high standard in comparison to other places, but at the same time we had to go far further. Both those things can actually be true at the same time. It is in that environment that we are keen to have our inquiry to drive change within the sector, but I just wanted to put on record those are all the committee members of the exceptional job that is done day in and day out by that sector, including the third sector as well. I thank you all for your time here this morning. Your evidence has been very useful in forming our scoping exercise for the forthcoming inquiry and, as previously agreed, we will now move into private session.