 Rhyw bwysigrwydd. Rhyw bwysigrwydd, a gwybod i gyd yn eraill y 26 ym 2015 o'r Eisteddfwyll Cymru. Rhyw bwysigrwydd, ac yn y rhum, rwy'n ei ffôr i gael i gael i fynd i'r rhaid o'r mewn bwysigrwydd fel sydd yn ymgyrch. Gofyn, mae'n gweithio'n gwybod i'r rhan o'r cyffredinol o'r cyflwyllfa iaith. The first item on the agenda today is subordinate legislation and we have one affirmative instrument before us. As usual with affirmative instruments, we'll have an evidence taken session with the minister and officials on the instrument and once we have had all of our questions answered, we'll have a further debate if necessary on that. The instrument that we're looking at today is mental health, detention, conditions, excessive security, Scotland regulations 2015 draft and you have that before you. Can I now welcome the minister for sport health, improvement and mental health and his officials? Jamie Hepburn, welcome and good morning. Nicola Patterson, unit head, protection of rights, unit mental health and protection of the rights division and we have Stephanie Virgo, who is a late witness just to get me tongue tied this morning, but welcome, special welcome to you. Can we have a brief opening statement from the minister? He's prepared for that. Thank you for that opportunity to introduce these draft regulations to be made under section 271A of the Mental Health Care and Treatment Scotland act 2003. The draft regulations before you will deliver this government's stated intention to ensure that the scheme provided for in the 2003 act can operate effectively in the present secure estate. They will fully deliver the recommendation of the Milan report that patients should have a right of appeal to be transferred from the state hospital or a medium secure facility to conditions of lower security by extending the right that is already enforced for patients in the state hospital to patients in the three medium secure units in Scotland. The government's stated intention was set out in an initial draft regulation provided to the committee on 24 April to assist your considerations of the provisions in the Mental Health Scotland Bill 2015, which is now, of course, an act of apartment having received royal assent on 4 August. The draft regulation has been considered today. It differs from those provided in April in only two respects, and I shall deal with each regulation separately and highlight where there has been an amendment. The 2003 act introduced the requirement for applications to the mental health tribunal from patients in the state hospital and those in medium security to be accompanied by a supportive report prepared by a medical practitioner. Regulation 3 is in addition to the April draft regulation amending the 2003 act so that this medical practitioner must be an approved medical practitioner as defined in section 224 of the 2003 act. As approved medical practitioners have been approved by an NHS board or by the state hospital's board for Scotland that is having special experience in the diagnosis and treatment of mental disorder, they have the necessary expertise to assess and determine whether a patient requires to be detained under conditions of special security in the state hospital or whether the test in these regulations is met for patients in qualifying hospitals. Regulation 4 remains unchanged unless the three medium-secure units in Scotland and its patients in these qualify hospitals that will benefit from these regulations through the extension of the right of appeal against being detained in conditions of excessive security. Regulations 5 and 6 set out the test that must be met for the mental health tribunal to grant in order to declare that the patient is being held in conditions of excessive security in requiring the relevant health board to identify a suitable hospital with the appropriate level of security. The test focuses on the key issue of the risks that the patient may pose to themselves and to others. After all, the purpose of security and psychiatric care is to provide a safe and secure environment for patients, staff and visitors, which facilitates appropriate treatment for patients and appropriately protects the wider community. It is only when the level of security that the patient is subject to is greater than necessary to manage the risks that a lower level of security can be considered. At the April dark regulations included reference to the risks to patient safety that other persons may pose. That has been removed following consultation, which highlighted concerns about patients being detained in conditions of excessive security due to the risks posed by others. With that, I am happy to field any questions that the committee may have. Thanks minister. We now move to questions from Rhoda Grant. Can I ask about patients who want to appeal their level of security? Quite often that happens after their level of security has been changed. For instance, if they move to somewhere that there is increased security, one of the problems with that is that if they win that appeal, the place that they had previously occupied has been given up to somebody else. They may win their appeal against increased security, but there is no bed anywhere else for them to go. Is there anything in the regulations that keeps that bed open to them and gives them a period of time to appeal? I do not think that there is anything in the regulations specifically related to that point, Ms Grant. I can maybe ask Nicola to confirm that. In a second, of course, the legislation has set out as such that, where anyone is successful in an appeal, they are transferred when a bed becomes available. That is no different to the approach that it has taken just now. I will ask Nicola to confirm that I am correct in that. Are there any plans to change that, given that somebody's liberty could be at stake because they had a bed, that bed has now been given up and the level of security was wrong? I am always willing to take on board to suggestions that we can look to Finesse and adapt the assistance that we have in place. Clearly, we have just been through a bill process, a very extensive bill process. The committee was obviously integral to that process, and we do not have any plans to reassess it any time soon, but we are always willing to keep those things under review. It was discussed during the bill process, and I think that that was on the record a number of times. A place should be kept open with a time limit to allow people to appeal, should that be the case, so that they would not be held in excessive security. However, I would be grateful if you would look at that again. My second question is why is it restricted to key places? Rather than any level of security, one imagines that anyone being kept under an enhanced level of security should have the right to appeal down to having no security at all? Essentially, when I set this out in my opening remarks, we were trying to fulfil what the 2003 act required us to legislate for now. It has taken us a long time to get there. I would willingly concede that point, but the 2003 act was pretty clear. Indeed, the Milan report was pretty clear that it was to relate a right of appeal against excessive security, to relate to those held in the state hostel and those in medium security. That is what we are fulfilling with those regulations. I share Rhoda Grant's concern, but I accept that it was all dealt with at stage 3 in the chamber, although I still have a quarrel with you. Of course, it is not just what you said there, but what you said in your policy note about what the 2003 act required. Of course, there is no mention of medium security in the 2003 act. The whole case at the Supreme Court in 2012, which is required to bring those regulations, would never have been taken if medium security had been mentioned in the 2003 act, because, of course, the man who went to the Supreme Court was in low security accommodation. I do not think that it is accurate to say that you are doing this because of what the 2003 act requires. You have made a policy decision to do this, but you only want to have the right of appeal in medium security. I would willingly concede that it is also a policy decision to take up the point, though, Mr Chisholm, about the legal challenge. It is correct to say that it was someone who was held in circumstances of low security, who brought forward the challenge. However, the court's ruling did not relate to that fact. The court's ruling was related to the fact that we had failed, as a Parliament, to institute any form of legislation based on what we had said we would do in 2003, when we passed the 2003 act. The fact that the individual was in low security was not necessarily relevant to the specific regulations that we sought to bring forward. I accept that the judgment did not say anything about low security. My point was that it would never have got to court in the first place if the legislation had talked about medium security, because the man would have had no grounds for an appeal if he was in low security and the legislation had described medium secure. That was my point. For me, personally, it is very annoying that you keep talking about that in your policy note. I have a question in a minute, but I am just specifically about regulation 3. However, in your policy note, you refer to the mental welfare commission consultation forum. You say that there was some divergence of opinion among participants, while some consultees question the need to introduce regulations. The group has a whole recognition of that as an option, but you failed to say that the Mental Welfare Commission, the Scottish Association of Mental Health, the Scottish Human Rights Commission, the Law Society of Scotland, the Equality and Human Rights Commission and the Scottish Independence Advocacy Alliance all wanted it to be extended to low security, as well. Yes, but you know that anyway, Mr Chisholm. The point that I would make is that the Milan report was very clear that it was patients in medium secure facilities to have the right of appeal. We are fulfilling what was set out in that report for those who are held in low security. I think that we should also remember that this is about the level of security that you are held at, not the specific circumstances around which you might be held detained. There are already means by which those held in low security can appeal against certain circumstances of their detention. Of course, if they are in conditions of less security, they can also ultimately appeal the fact that they have been held at all. There is already a mechanism there for those who are in the lowest form of secure accommodation. I think that the key thing in the Milan was the least restrictive manner and environment compatible with the delivery of safe and effective care. I think that that was the principle behind the amendments in the 2003 act. I realise that that is a minor point, but I always get worried when regulations amend primary legislation, so I am just a bit worried, not worried, but I am just really curious as to how that came about. Was that just omitted from the bill changing to approve medical practitioner at the time, or was that just something that was not caught? Presumably, is that now the definition in 329 Clause 1? I do not think that it used to be. It is a bit of a tidying up exercise, but it was also something that was raised with as bi-practitioners themselves. That should be the definition. You say in your note that approved medical practitioner has defined in section 3291, so was that already in the act from the debate in June? I might just bring Nicola in relation to that, but it is from the 2003 act, rather than the one that we just passed. I do not know if you have anything to add in relation to that. Approved medical practitioner has defined in the 2003 act. In essence, in introducing that amendment here, we are just using that definition that already exists following discussions with stakeholders. Rather than a more general term of medical practitioner, it is a very specific defined term in the 2003 act of approved medical practitioner. I do not think that it is a substantive point. I am still a bit curious about that, because if that was the term used in the 2003 act, you would think that it would have been in the clauses of the 2003 act. I accept that as a technical point, but it is quite interesting at the same time. Obviously, that is an important part of what you are proposing, that appeals are only possible with the consent of an approved medical practitioner, which might again be quite a restraint on how many people are actually able to exercise that particular appeal. If the first 100 state hostile patients to make an application, 91 per cent of those whose applications were unsuccessful did not have support for the application. We are trying to strike a balance between ensuring that we do not have speculative appeals that might be encouraged by someone other than the patient, which could be very disruptive for the patient's treatment, but also ultimately giving a patient a right to seek to appeal where they feel the circumstances are merited and they can get an approved medical practitioner to provide evidence to back that up. You accept that you are restricting, in that sense, the intention of the 2003 act? I would not say that we are restricting the intention of the 2003 act. I would say that we are trying to put in place a system that is designed to ensure those individuals who are held in either a state hostile or the medium secure accommodation have that right of appeal but is taking forward in such a manner that is not likely to be unnecessarily disruptive to the treatment of people who may be in very vulnerable circumstances. I hear what you are saying, but you should accept that you have modified the intention, which was so profusely praised by the current Cabinet Secretary for Health, who thought that it was the part of the 2003 act that she was most enthusiastic about. I know that she is very happy with what we are doing here too, Mr Chislett. I am glad that you hear it. Any other questions from committee members? Richard Lyle? Morning Minister, you said that there will be a number of patients who can apply to appeal. Do we have an idea how many appeals possibly could be in what the total cost may be? I am all for people being able to appeal, but can you give us a bit of background in regard to what you believe the total cost will be? I think that the only way to answer the first part of the question is how many might appeal. We do not know how many might appeal because Clare Lleithson is commenting on the individuals themselves to seek to bring forward an appeal. What we can say is that the mental health and patient bed census, which was published in June of this year, shows the number of patients as at 29 October 2014, who were in medium secure units. There were 127 patients and all of them would be eligible to seek to take forward an appeal. We have provided some detail in terms of what we think the costs might be arising out of this mechanism. That was set out in the business and regularity impact assessment estimated costs for the public sector health boards, the mental health tribunal and the legal board, are around £760,000 per arm. Who will refund them or will they be giving extra money in regards to this regulation? We always seek to fund anything that we deliver, Mr Lyleithson. I'm happy to hear that, Minister. Thank you. No other questions from members. We now move to agenda item number two, which is the formal debate on the affirmative SSI, which we have just taken evidence. I remind the committee and others that, in my previous remarks, we have not at this stage put questions to the minister during the formal debate, and officials cannot take part in the debate. Can I invite the minister to move motion before SS4M14389? Moved, convener. Thank you. Do any members wish to contribute to the debate? Malcolm Chisholm. I mean, just briefly to explain, I'm obviously from my question, I'm not happy with the regulations, but given that they're consistent with the primary legislation that was passed on the 24th of June, there are no grounds for, in my opinion, voting against them. Any other members? No other members? I don't know where the minister feels they need to sum up, but he's afraid to do so. I think there's a steer for me there, convener, I do not, so that's fine. Did you move the, you did move it, did you not? Right, okay. We now put the question on the motion. The question is that motion SS4M14389 be approved. Great, we're all agreed. Thank you, thank you all for your attendance this morning. We'll pause at this point before we move on to agenda item number three. We now moved, as I said, to agenda item number three, which is a final evidence session on our pallidive care inquiry. Before we begin properly and address our witnesses, I'm going to ask for Rhoda, and I think myself, to just comment on the recent visits way that we undertook to gather evidence with service users and carers at Chaz, Rachel House and Cynros, and Gown Hospice in Greenock. Rhoda, can you put some of your reflections, observations on the record play? Yes, I think the thing probably most striking is kind of, Rachel House was different to what I would have thought of as hospice care. Hospice care, I think, we see as being something very much at the end of life for us. Rachel House was kind of hospice care pretty much that was lifelong. Young people being born with conditions that needed a lot of intervention in getting the support. Not only the young people, but their families, getting the support that they needed. I know that hospices deal with the whole family, but sometimes the parents, I think, were getting as much out of Rachel House as the children in that they were getting a break. Obviously, if you're looking after a child, that is continuous, so that they were actually getting a break and the staff there were very clear that they looked after that child in the same way as the parent would look after the child, so that the care fitted with what the parent wanted. I think that that was really important and it was kind of a lifeline for people who were using the service and people used the service depending on need rather than anything else. What struck me speaking to staff and parents as well was the differing levels of support outwith Rachel House. We met with two parents who had probably similar caring responsibilities for their children but had totally different care packages at home. One had a really good care package, had no complaints whatsoever, loads of support and the other had very little. I think that's something we need to try and get to the bottom off because it seemed to me really unfair that the same level of input required from the parents but not the same level of support. The other thing that was flagged up that we maybe haven't quite dealt with was I suppose advances in medicine and young people who maybe weren't expected to live very long are now living a lot longer and there is an age limit to places like Rachel House and there needs to be and I would imagine this is more important some kind of transition between children and adult services because given their level of support given by Rachel House I think people would become quite dependent on that as a lifeline but it was a really good visit and they made us very very welcome and staff and parents were really open about speaking about their own experience and really grateful to them for that. Thanks Rhoda. Just for the records I'm myself, Dennis Robertson and Malcolm Chisholm and I visited at Gown Hospice. We had a good tour of the facilities, especially the facilities that were there. We were able to engage with the male and female groups of service users and indeed some of the carers at the hospice. There were many of these issues I think came up, you know, burning mine we're dealing with a specialist end of the service. There was I think a high value of the service just to summarise I think that people felt the routes to referral to the hospice were not always obvious and being referred to or pointed in that direction by clinicians or whatever the network wasn't strong and many of them found themselves using the wider hospice services because they needed to access the transport system that is run by volunteers that take them out of their McLeod area into mainly cancer services provided maybe at the beach and so that was a very valuable service in support. That of course I think we heard allowed them to overcome the misconceptions that they felt about the hospice and its care because we heard in some of the evidence that outside that and before experiencing the services at the hospice they felt that it was some place to go and end your life it was a you know and of course for them that wasn't some of them had been going for some time they were provided a very personalised service that allowed them to seek out peer support to deal with their fears and apprehensions about their illness you know so as I say it was a very highly valued service for those who could who could access it and you know where Malcolm or Dennis wish to add anything to that you know it's just a quick summary of the of our engagement at the hospice. I thought the concept of inside out delivery of palliative care I mean I think it was just a striking phrase I suppose a sound bite almost and I'm sure lots of people are doing it in terms of taking services out into the community but I thought it was quite an interesting way of capturing it and the second thing that I thought was well there were others as well but just to mention too was the idea of training people in the community who might be able to assist in signposting potential service users to the hospice and its facilities and one example of that was hairdressers just the extent to which people in the community are using them and people talk to their hairdresser and so on so I thought that was quite an interesting idea as well. Thanks anyone else? Given that I suppose anyone else refers to myself convener is I think I think primarily I think the only thing I probably add to it was the positivity that was around not just from the the patients within our gown hospice and some of the carers that were there but the staff themselves the absolute positivity that was around I I certainly didn't witness or hear any negative comments there were maybe have issues to some areas but can I say that the issues were seen as something that they weren't actually barriers the sort of something that could be overcome and I think that was the message I left with that regardless of what was there the issues could be actually addressed overcome so it was a huge sense of positivity and I think to be congratulated. I wasn't able to go into this particular visit to Ritchell House but I was there I suppose it must be getting on for 10 years ago and I absolutely agree with everything Rhoda Grant said about the care of the whole family not just the the actual patients but what's what's I think probably struck Rhoda which wasn't the case when when I went there was the fact that these very people with severe disabilities things like muscular dystrophy are now surviving into adult life and that's a different situation than there was a decade ago I think that has moved on quite significantly. Thanks for for for that we now move to the evidence session thanks for your patience folks and we welcome to the committee Mark Hazelwood chief executive Scottish partnership for pallidative care. David Dr David Carroll strategic lead for pallidative care and end of life care NHS Grampian, Ronald Mayer chief executive Scottish care and David Formsdon field work manager eastern Banshire council social work services and Beth Hall policy manager health and social care team COSLA. Thank you all for your attendance this morning and I'll go straight to questions which have have again Dennis thank you and then we'll go with that. Good morning and I think one of the things that strikes me from the evidence that we've heard and there's a lot of the written submissions is this area around definition there seems to be some and it's not confusion but there's so many definitions and I'm just wondering is the fact that the the different definitions that are out there is a barrier an obstacle in terms of the provision of pallidative care because if we look at the the world health organisation one and then we look at GMC you know there are differences and I accept there should be a difference in terms of the the the one for children and young people so is the definition a barrier is that causing the the problems in terms of the provision of pallidative care. I have to agree with you and I was very interested to read Professor David Clark's report to the Scottish Government just the other day when he mentions the fact that there are a lot of definitions there and that these definitions may in fact inhibit I think he put it clarity and action I think there are certain definitions are necessary generalist pallidative care and perhaps specialist pallidative care but pallidative care and pallidative illnesses are ongoing illnesses there are continuum from the point of diagnosis through ultimately to death and there will be decline and fading timescales what that person requires and their family require is appropriate care at specific points throughout that illness identification and assessment of need is important sometimes that need may be very appropriately and easily managed by generalists in other words non-specialists in pallidative care at other times situations problems may be complicated and we need the input of a specialist pallidative care team. The definition end of life I think is not good and there was a very good paper in the BMJ in 2008 which stated very clearly that we needed clarification of that definition because people use them very differently so I agree. I suppose I take a slightly different view from Dr Carroll that is that I think the previous consideration of policy in living and dying well broadened out our approach to pallidative care from a fairly narrow focus on premature death and linked primarily to cancers that was the focus around pallidative care what living and dying well did was to broaden out to saying we have to look at end of life care for a range of groups and get that right and indeed as you can imagine from my own perspective the inclusion of social care within that was hugely important that this wasn't just a kind of medical issue a health issue this was actually about broader social care provision there's been a slight danger over the last decades that we've medicalised death it's no longer a natural process it's it's now something akin to an illness and that seems to me a misfortune but even if we just simply look at the numbers we look at care homes for older people there are 33,000 people tonight in care homes for older people all of whom are approaching end of life and indeed a large number may have conditions which are in themselves life shortly but they are not included routinely in definitions of pallidative care yet I want to ensure and I imagine you want to ensure that there is a good death for each of those people and that the care they receive is adequately resourced to deliver on that and indeed that there is access to specialist support when that is needed what we don't want though is the routine movement of people from a care setting to a hospital in order to access that so it seems to me that we the definition does matter hugely matters so I think that that I agree entirely with that I think there does need to be a continued approach about specialist palliative care provision but the thrust of policy has to be more encompassing of end of life care and not retreat into a narrow focus simply on premature death. I think that the lack of clarity around terminology is a problem and I think sometimes the lack of distinction between general palliative care and specialist palliative care and the use of I suppose the slightly careless use of terms such that discussion takes place without people actually being clear what they're talking about is a problem and I think that's compounded by a general need to raise professional and public awareness of end of life issues more generally and I think in our paper we said that I mean set we included the formal definitions which have been around for a long time but actually haven't solved this issue of a lack of clarity and what we've said was that one way of thinking about palliative care is to talk in terms of providing good holistic care to people whose health is in irreversible decline or whose lives are coming to inevitable close or who have received a diagnosis where their mortality is going to be impacting on decisions that they may make about what their priorities are and I think if we try and frame our thinking in those terms it's then it's not specialist palliative care or general palliative care it's thinking about the person as a professional who perhaps is in front of us what are their needs and circumstances and what matters to them and part of meeting those needs may be about something which can be offered and provided by a generalist service or it may be that if somebody has more complex needs and then we need to think about accessing specialist services of all sorts part of which might be specialist palliative care with their particular expertise around communication, meeting social psychological needs and also symptom management as well. Anyone else? Nick Dennis. If I can continue, convener, thank you. Dr Carl or perhaps David convener actually declared that Dr Carl provided the end of life care. I know he doesn't like the term for particularly well for my mother back in 2006. In your submission, Dr Carl, you said that accessibility to the care should be based on clinical need and not diagnosis. Is this the holistic approach that Mark Hazelwood was talking about? Yes, and I think one of the great strengths of living and dying well was that it stated very clearly that need was the prime mover for the care that was delivered, not the diagnosis. As Randall said, as we sit at this moment in time in Edinburgh, the vast majority of people with palliative illnesses and therefore the vast amount of palliative need is actually out in the community. It is not in hospitals, it is not in hospices. Therefore, the vast amount of palliative care that is being provided at this moment in time will be by general, as largely primary care teams. Therefore, irrespective of the diagnosis, the person and the family will have needs. Those needs need to be addressed. They need to be assessed having been identified and addressed appropriately and as promptly as possible. That, if we don't get right, means there will be a large amount of unmet need in the community. I agree with Randall. Sometimes that need will be physical, symptom control, sometimes it will be social, lack of support carer, sometimes it will be emotional just as the World Health Organization defines palliative care. Therefore, palliation is holistic. In what else? Thank you, Mr Forenston. I mean, just to follow on from what's said, I think it's recognised that the previous reports in 2008 and also the Audit Scotland report and the report on children in 2012 I think inevitably focused on clinical pathways, on relationships between secondary care and primary care perhaps didn't focus as much on the social psychological aspects. I think what we need to do is be much clearer about pathways, about the fact that most people are going to be within the community for most of their end-of-life care, that links, which hopefully will be helped by the new integration of integrated joint bodies, so that there are good pathways from hospital into the community, including voluntary agencies and a range of support agencies, and that the hope would be, I suppose, to minimise the number of readmissions into hospital and also to make sure that there's good discharge planning. Clearly not everybody's going to need a social worker, but social worker core skills, I suppose, focus on what was being talked about, right, good assessment about good support planning, helping people where possible, put together flexible packages of support through things like self-directed support and direct payments, so that they retain control for as long as possible, right up to the end of life, and that there's good multidisciplinary working between social workers, occupational therapists, many of whom work in the local authority, and a range of health practitioners. Is that your cue, Beth? Is that your cue? I don't have a great deal to add, because I think that the discussion has drawn out the points that I would have made, but maybe just to reflect back to the start of that discussion there, where Mark was talking about a different kind of definition, a different way of thinking about palliative care, because although I don't think you said the word outcomes, but I felt that that was very much the meaning behind what you were saying. I think that if we take that approach, where it leads us to thinking about services differently and moving away from that very clinical understanding of palliative care, which tends to focus on the acute provision towards the end of life, I would have to agree with both Ronald and David as well in terms of the role for that much more person-centred approach. I think that that gives us some challenges in terms of how we think about services and the way we would normally classify services around specialist palliative care, general palliative care, but I think that that's very much the right way to speak on. Can we probe this a wee bit, then, if we agree with Dr Carrol that in hospices we get that specialist care, it's 24 hours, there are lots of people around in my experience, it's quite intensive and it's range of support at the clinical, at the end of the day, and indeed the people that we spoke to last week, lots of support, dealing with that emotional aspect of this, often different relaxation, all of these new available help in stressful situations. How do we compare that with what happens in the community? Can I come back in on this? Given your reports earlier on some of your visits, I think that it might be important that you are also touching base with those people who either provide care and care homes in homely settings, or indeed in care at home services, where they are also supporting people as they move towards end of life, because I think we've got to get a consistency of approach. Some of that means upskilling the workforce in those other settings so that they are positively aware of the agendas around dying. I think that there has been quite a significant improvement over the last six years since living and dying well. I think that we have actually seen less traffic of people from care homes to hospital at the end of life. We've seen more investment by care organisations and more support to them from organisations like McMillan and Marie Curie to try and develop their capacity to provide positive end of life care. However, not surprisingly within that, there are agendas around resourcing and making sure that's adequate. The average staffing level in a care home for older people at the moment is one member of staff to five residents. That's woefully inadequate. I don't have the figures, but... No, no, no, no. I'm just... Sorry, somebody else on it. The others mean less than they are, yeah. Significantly better than that. Yes, yes. We did just... I didn't mention it and none of us mentioned it. We did meet obviously people. Our gown hospital provides care in the community and at home and provides us support now. We also engage with the wider partners who are delivering some of that social care, which they made your argument. I take your point, maybe we could have done that. I know this is not the arena to carry the debate about resourcing forward, but I do think that we do want to have an even standard of provision of end-of-life care across different settings, people in their own homes, people in care settings, people in hospices, people in hospital. Then there has to be a greater evenness, a level playing field about how services are resourced and indeed the supports available to draw on. So it would simply be to lodge that point. I think that there is a resource issue. It is about training. It's about, as Randall says, upskilling ordinary care at home workers who are going to be seeing the majority of people we're talking about, but it's also recognising, I suppose, the fact that if we're talking about, for example, overnight care, weekend and evening care, that's certainly local authority home care services, whether it's direct services or commission services, purchasing services are really not geared up to providing that intensity of support over a number of weeks and months. So there's a service aspect to it. There's also a personal care funding aspect in that, as you'll know, free personal care for people over 65 is free, but not for people under 65. So it means that numbers of people under the age of 65 who need intensive support at home are going to have to pay for it and they're going to have to probably pay the maximum charge in order to receive that care. You'll also be aware of the virtual demise of continuing care, the recent circular that came out a couple of months ago, which, unlike in England, effectively says that unless if somebody can be cared for anywhere else, apart from a hospital, that they should do so and basically the NHS will not fund that care. This contrasts quite starkly, I think, with the UK Parliament Health Committee report that came out in March, which firstly said that all social care funding should be free for everybody and secondly that there should be a lot more promotion of the use of continuing care for people, neither of which will now apply within Scotland. I may use figures. In 2012, in NHS Grampian, 5,318 people died. 3.7% of those deaths occurred in the hospice, which is a tiny minority. Of the people who died, 88% were over the age of 60 when they died. 75% were over the age of 70 when they died. So we're looking at people at the end of their lives who require care. This is not the cancer population. This is very much a changing spectrum of palliative care. If we aim to enable more of those people to stay at home for as long as possible and ultimately die in their own home, we need a workforce. That workforce is not just important in terms of people at the cold face. It has to be a workforce that has a sufficient knowledge base and skill base to identify and deal with the problems that those unfortunate people are going to have if they are to remain at home safely and in comfort. The other thing that is likely to be required is some form of respite. Looking after someone at home in the last weeks of their life can be physically and emotionally exhausting. If there are family members who are fit, they may be able to carry that burden. But given the figures that I've shown and the age of those people, the main carer may be also quite old and with their own medical problems and therefore unable to sustain that level of care. They need help. Respite is important for the patient and the carer. It's almost a reflection of what you were saying, Mr Chisholm. Out the in, but out. That care could be given at home or that respite care may require an admission to some unit. I see David Fonson and I wish to come back in. Picking up on the issue, I suppose that the question came about in terms of the contrast between what happens in a hospice and what may happen elsewhere. I suppose that the point about this is that we need to have good care in all settings. As we know, over half of deaths in Scotland occur in hospital. There's some aspiration to reduce that as a percentage, but we know that there will continue to be a very significant number of people whose end of life care is provided in a hospital setting. We've heard from Rhanold also about the numbers of people who are living in care homes for the elderly towards the end of life. We have to get this right across all settings. I would just agree with the points that have been made about the need for resourcing to do that. I know that in the care home field, for example, if you look at the levels and complexity of needs of people who are now in care homes compared to five or 10 years ago, it's a very different population. We need to to resource that and also to think about the implications for that in terms of education. We need to think also about, so there's an issue about education. There's lots of great education resources out there, but what we don't have is a comprehensive and systematic framework which acknowledges that pallid to an end of life care is the core business or one of the major core businesses of our health and social care system. If you are in that system, what are the core competencies that you should have in order to play your part in terms of providing that good care across all settings? We need to develop that sort of framework, perhaps a little bit like the framework for excellence that was put in place for dementia. I think we should be thinking about that for pallid to an end of life care. We need to embed pallid to an end of life care education within undergraduate curriculums as well. I think then there's a question about culture also. There's some very, very good end of life care in hospitals, but our hospitals will largely come from a model of cure and we need to try and make them places where it's possible for good holistic care to be provided in circumstances where cure isn't possible. That's a challenge in busy acute hospitals, but there are some good examples of care, but we need to have a bit of a culture shift around that and recognise that, again, a big part of what Scotland's acute hospitals do is to provide care for people in their last year of life. Beth Hall? It was just to pick up on a couple of points that the previous speakers made. I have to agree wholeheartedly in terms of the need to develop the workforce and to use the workforce more flexibly. There are, as previous discussion has indicated, a wide range of staff in many different settings who do play a role in pallidative care and who could potentially play a much greater role. However, if we're talking about developing the skills base and the knowledge base within the workforce, that does require investment. Several people have highlighted that. There are some real challenges there and some big political issues about an on-going desire to protect investment in the NHS, often at the expense of an investment within local government. That's taken place against a backdrop of a situation in which we as a society don't value social care in the same way that we do NHS care. We're not willing to pay decent wages for it, which then causes problems with recruitment and retention within the workforce. Against that backdrop, it's very difficult to look at upskilling staff and asking them to take on more responsibilities that may be outwith their professional boundaries traditionally, yet we're not able to provide an increase in benefits to staff for that. That does absolutely nothing to help recruitment and retention problems and, in some cases, it makes it worse. We also started to touch on the role of carers. We recognise that people who provide unpaid care are absolutely key to our health and social care system. Without them, it would just collapse. However, in recent years, what we've seen is a dialogue around a very superficial approach to carers. We've got a piece of legislation going through just now that I know that the committee has examined, which will introduce a universal entitlement to assessment for carers. However, that doesn't equate to an entitlement to support and will divert resources away from that support budget. We really need to take a step back here and look at the bigger picture in the round of what's going on within the system that's producing the outcomes and the variation and the issues that we're all talking about here today. Just one quick pick-up on points in particular, the points that David May was very positive. There are parts of the country where we are unable to recruit the workforce. This is not just an issue about—there is an issue about resourcing, there is an issue about training, but we've got to promote careers and care. Parts of Grampian are particularly problematic at this point. Aberdeenshire is very hard to recruit the people we need, so we need a workforce to deliver the care. We've also got to make sure that we're maintaining the capacity, the volume of care. Contrary to what you might expect, given the demography, we are delivering home care to 10,000 fewer people now than we were 10 years ago. 10 years ago, we were delivering home care, including the traditional home health service, to 60,000 people. We are now delivering care at home to 50,000. The numbers have gone down. A lot of people may be getting more intensive care packages. Their hours of care being delivered have increased, but the number of people receiving care at home has decreased. Similarly, with respite, we're actually seeing a reduction in respite services and people's access to those. If our goal is to support individuals and their families to end of life, we have to make sure that we're maintaining the volumes of care that we require of different kinds and that we're managing successfully to recruit people into working in those settings, and that is proving hugely challenging right at this point. David, just to go back to training that Dr Carroll was talking about. I think that because of the focus on clinical matters, which I started with, as opposed to training for social care, social work stuff has tended to lag behind, and I was sort of acknowledged that it maybe could be more proactive than we have been, but home care is going in three or four times a day, where the people who know the patient or the customer best are no different from anywhere else. Anybody else in terms of their feelings about death and mortality and maybe hoping somebody else will take on the care. I think there are some good examples of initiatives in Renfrewshire and I think North Ayrshire where there's been partnerships between home care agencies, hospices, the local hospice, and I think in Renfrewshire community psychiatric nurses who offer their own batch a set of training programmes for home carers, and I think if that could be replicated across the country with maybe electronic training and some funding that would be good. Similarly, social workers in their training, professional training courses, I think this is probably another topic to be added on to a number of other topics, but it's an area that needs to be much more promoted. As I said earlier, most people will not necessarily need to come near a social worker, they'll have good family support, other people will be a lot more vulnerable, isolated, may lack mental capacity, and there's a number of areas where social workers can intervene, not only in supporting them with delivering services, practical aspects around housing and welfare benefits, but also helping with advanced planning, bereavement work with families once the person has died, but also working with a person in their last stages of life. We've talked about the sort of psychological emotional elements to help people to come to terms, talk about their feelings and their concerns about dying to do things like maybe writing letters to people, to, I mean, there's some examples of things like life story books, helping people to take stock of their lives, and Beth has mentioned obviously the whole thing about support to carers, so there's a huge range of social work, which is maybe not sort of explicit, but there are work with people with long-term conditions, work with people with dementia, as well as people with cancer, and I think that's an area for development. Dr Carl. As we've discussed workforce and skill mix and education, I think that we have to be always mindful of the fact that 70 per cent of the week is now deemed out of ours, and therefore we also require a workforce out of ours, which has the same qualities and skill mix as that in ours. Illness, unfortunately, is not a respecter of Monday to Friday 9 to 5. Problems exist, deteriorations, acute symptoms are, I suppose, statistically more likely to happen out of ours than they are in ours. We plan care, we plan handovers to the out of our service, and we have the key information summary, and we do our best, but unfortunately all illnesses, particularly pallidive illnesses, have two components. There is a degree of predictability, but unfortunately there is also a degree of unpredictability, and that is the problem. We have to be prepared for the things that we cannot predict happening. David, I've got the members here who wish to come back in to thank the witnesses for their engagement this morning. It's almost like a panel we've got here this morning, so we've been taught a lesson to listen for a wee while, but I've got Rhoda and Richard, followed by Richard Lyle. I just wanted to turn to equity of service. We talked briefly about people with life shortening conditions and them usually having more access to palliative care and then kind of opened that up to people towards the end of their lives. One of the things that struck me certainly at Rachel House was the different palliative care available in different areas, depending on the health board or the local authority. I wonder how we can, I suppose, get a minimum level of service that people can expect towards the end of their lives so that some people aren't getting exceptionally good care. I think that we hear of exceptionally good care being available, but we also hear of people being pretty much left, and quite often those are the ones that fall back on A&E, and they're like when families no longer are able to cope, and nobody wants to die in hospital if they could die comfortably at home. So, how do we do that? Mr Hazelwood, and I think Mr Mayor. Yeah, we obviously across the health and social care system hear about kind of postcode lotteries. I think in this instance if you think about as we've heard the bulk of palliative care being provided within generalist settings it may even not be to do with your postcode, the sort of support and access you get, it may be much more at a micro level about who are the health and social care professionals who you happen to encounter. So, there's some data around GPs level of comfort in terms of initiating and conducting discussions about people's preferences for care towards the end of life, and we know that some GPs are more comfortable and able to do that than others. So, it may not be about where you live, but the particular general practitioner who may be able to may be more comfortable to take forward those discussions than another, and then if you think about perhaps an admission to hospital with a sudden deterioration, again it may come down to whether you're admitted to a ward where the staff have been able to have access to training and support and who are comfortable and able to use that skills and knowledge to provide your care. I think that's why I would want to come back and emphasise the importance of comprehensive education and training, because I think that is the way in which we can start to address the slightly arbitrary nature of what people experience in terms of general palliative care. Mr Mayer. I can simply, in part, echo what Mark said and add to it. I think that the stance for excellence in terms of the parallels with dementia are quite useful to us here. We have tried to make inroads on relation to dementia by setting educational standards, comprehensive educational standards for people working in the sector, whether as specialist staff or even generalist staff, certainly within social care. We've also, for instance, the Government has set in the requirement for one-year post-diagnostic support for people with dementia. Again, there's a kind of saying, here's what you can expect if you've got a diagnosis of dementia, here's what you can expect. Perhaps we have to move in a similar direction in terms of saying, here are the things you can expect. There are standards. We're at the point of the review of the national care standards taking place, looking for them to become more human rights embedded going forward, but within the next two years we're likely to have a new framework of national care standards. It would be important that palliative and end-of-life care were anchored embedded within that framework of standards going forward. I think we should use some of the mechanisms that we've already got and some of the things that have worked for tackling other areas. We've improved, Dave, for dementia. We've improved by introducing national standards for things like tissue viability and other areas. We use the mechanisms that we can say, well, that's made a difference to that area of care. Can we apply the same sort of approach, a joined up approach? That's more possible now given integration at a local level and indeed even between the regulatory bodies and the improvement services are coming more at a line, so Health Improvement Scotland and the Care Inspectorate are working more together and perhaps can provide a vehicle for driving standards of palliative and end-of-life provision across health settings or social care settings. I think that two of the biggest issues in terms of access are around the reach of specialist palliative care services. I feel like I'm trying to improve how that reaches into settings beyond the hospital and out into the community. I won't speak to the challenges around that because I think that there are colleagues who are here who are better able to do that, but I recognise that there are resource issues there the same as there are for local government. Secondly, the thing that we can do in terms of improving equity of access is about that upskilling, that greater use of generalist services that we've already spoken about. We've always mentioned recruitment and retention difficulties, so I'll not dwell on that. However, the other area where we need to be looking is in terms of improving the flexibility and availability of commissioned services, and that's partially about the commissioning behaviour of the integrated joint boards. We're in a shadow year for them, so it's very much watched the space in that sense, but also recognising that just as rural areas have real challenges around recruitment and retention of staff, they also have challenges around the range of providers that are operating within the area. Again, that's a real challenge for integrated joint boards as they develop their joint strategic commissioning strategies and looking at how they can support different types of provision and more innovative types of provision is something that those partnerships are doing. Whether it's in the muddy area and looking at how you support micro-providers or in other areas, it's about looking at how you work with the providers in your area in a much more integrated and open way around projecting what the needs of the population are likely to be and having an open discussion about the provision that will be needed now next year and into the next 10 years. Mr Fawrlser, terms of this grant's point about equity, I suppose it is partly, as Mark said, a certain amount of geographical inequity, where there happen to be flagship projects, but there are obviously people who die or are dying or are as diverse as the whole population. There will be, if you like, hard to reach or groups who don't engage with services like substance misuses, homeless people, there will be people in prison who need special attention, but a major group I'd want to emphasise is people with learning disability, increasingly people with learning disability survive well into adulthood and old age. Many of them are now cared for within supported accommodation units or will be known to social work and have particular needs. Although they lack capacity, I mean, often researchers suggest that they can still express choices about where they would like to spend the rest of their lives. We know that people with learning disability don't do well in hospital for a number of reasons I won't go into. The care homes may or may not get up to meeting their needs. There will be medical aspects like the difficulty of assessing the pain that somebody with a learning disability experience. They may lack a sense of time in terms of when is the best time to try and engage with them and to talk about end of life, which they may immediately think is imminent. There are various tools that we need to develop that are more accessible to work with people with a learning disability, so that's a whole area I think I'm acknowledging we need to be much better at. To go back to the dreaded resources issue, it does mean that if we continue to maintain people at home or within supported units that there are major staffing implications are doing that, you're often then talking about one-to-one or two-to-one support, and that is a hugely expensive exercise, but it's something that we're absolutely committed to because it's moving somebody with a learning disability or autism at a point of change or whatever is certainly best avoided, but it's something that is increasingly challenging in terms of resources for us. Just a small point, someone mentioned rural areas, but sometimes the best care is in rural areas, because people know each other, the whole team knows each other, the GP knows, the community nurse knows, the care worker, they all roll up their sleeves and get their heads together, make it work in the sky where Macmillan works with boots in the community nurses to make sure that they have drugs available for people at the end of life. There are really good examples, where it seems to fall down is where you've got big teams with demarked roles in that and nobody taking responsibility, and I don't know if we maybe need to look at somebody, a named person, in the end of life care where overseas that that care is happening and the teams are called in in more urban areas where you've got people who don't speak to each other every day and discuss patient care. Just to respond to the point you make, again, if we draw the parallel with dementia, the whole purpose of the one-year post-diagnostic support was to have a coordinating worker. That was what that person's role was to be, to help the family and the individual to come to terms with diagnosis and to coordinate the support round that person. I think there could be scope. I think there's such a debate around the use of the very named person in relation to children's legislation, but I think having a key worker, a coordinating presence around the care for somebody where there could well be a positive model to look at. Karol. I would agree and I think that sometimes small is beautiful and that there is that continuity and cohesiveness in smaller rural communities, and I've certainly witnessed that in NHS Grampian. As an old and ageing general practitioner, I am very keen that there is someone in control or organising a lot of the care. Pallidive care in a community setting is becoming multi-stranded, and you don't want the strands to be all tangled randomly. You want them to be pulled together in a cohesive way to maximise the quality that that individual patient gets. I think that my question would fit in at this point. There's been a lot of talk inevitably about workforce, about resource. Has any work actually been done on the actual financial implications of a comprehensive good pallidive care system across Scotland? It may not be an impossible one to answer, I don't know. Has any work been done on that? It would be interesting to know just how far short we are financially. That's a message to see. It's not a definitive answer to the point, but we can do cost comparisons between the cost of having somebody in hospital and the cost of supporting people in the community, even making the case for additional investment that we are doing. This ought to be an area of policy where there's a win-win, that actually there's a gain to the public purse and to improved outcomes for the individual and their families. I haven't seen this as an area where this was saying there has to be an overall explosion of resource or a major increase in resource. I think it is about how we spend and distribute the pot of money that's there to best advantage. The cost of having somebody in a general hospital ward is £1,400 a week. Upwards, if they're in an acute hospital bed, it's between £3,000 and £4,000 a week. You could do a lot with that in the community. That's a lot of hours of home care. That's several places in a care home. That's a whole lot of respite care. It isn't as simple as that because there isn't a straight reallocation of resource if you keep somebody out of hospital. We understand that. We've got to encourage people to be saying—that's why politicians love to defend the NHS and hospitals. Actually, this committee in particular has to be a defender of both health and social care and about the best use of resources to achieve the end results. Some redistribution of the existing resource pot may be important. Before we start coming to you and saying—or coming to the Government—that there will have to be a major increase in the resource allocation. Beth? I have a figure of how much it would require, partially because that depends on where you would want to set the bar in terms of what kind of service you would want to see, but also because some of the points that we've been discussing are around the need for a wide range of different services and staffing groups to play a greater role, especially generalist palliative care, so that makes it very difficult to pull out figures. For example, there are particular areas of work that we know would be contributing to that vision. For example, COSLA is currently in discussion with the Scottish Government on investment to lift wage levels in the care-at-home sector to the level of the living wage. We have heard around the table today that we would want to do more here, to be looking at the core training that happens at college and university and having a focus in there, that we want to be looking at clear. It's not simply lifting to living wage, it's not going to solve the workforce issues that we know we have. It's been quite clear that we need to have a career pathway, we need to see social care as a good career, so you would be able to cost those elements of things, but it's not an exercise that has been done that I'm aware of. I think Bob's going to, you want to pursue this question that will give you an opportunity to come back in. Just very, very briefly on, because I had a couple of little kind of mini questions, I'll hold off the second one to know Richard Lyle's in before me, but just on training. I kind of mentioned it before in the chamber, clear pathways in social care was one of the kind of major things that stood out for myself, you know, as well as family members being cared for in residential units and seeing the huge and amazing and outstanding job that care workers do under huge pressure and some will be there for 20, 30 years doing that job, but others will see it as a pathway through to something else. Quite often it's a filler in the pathways, not necessarily staying within health and social care and it's how we get that pathway to retain people in health and social care and is there scope for accreditation towards social work degrees, for example, if you do a year or two years in a care home or nursing degrees or having for a friend that some of our medics out there that going to senior posts within the NHS do a turn in a care home for a year and actually get to see what good quality social care looks like at the coalface as opposed to some of the clinical decisions they take in terms of care. So do we have to think more, more cute about how we provide, not just building the status of social care, because I'm not looking for an exit strategy for the polite of social care, it should be seen as a status drop on its own right, but is there other ways we have to look at recruitment and retention about career pathways through social care for a broader range of people? Well that was one of the two questions that it had to convene and I thought that was an appropriate bit to perhaps read that. Do you want to come in at this point Mark, because I cut you off the last time or you do you want Ronald to take this part over? It was just to pick up on the next question. So I'm not aware of a piece of work that's been done and I think that's really because as we've said a lot of the care that's provided for people is provided in generalist settings and it's difficult to pick that out and attach a particular price tag to it. I think in terms of improving things though what I wanted to say was there are one or two big ticket items and those are items which aren't specific to palliative care so we know that we've talked quite a lot about the need to ensure an adequate social care workforce. We've talked also and obviously there's a lot of work going on at the moment around capacity and general practice, but I think there's a lot that can be done and just referring to the report that we provided to committee members grasping the nettle you know what what can we actually do to improve power and end of life care and we've set out there 37 quite specific actions and some of those are big ticket but there's an awful lot that can be done that isn't going to necessarily be terribly expensive and what struck my organisation in engaging with our 50 plus member organisations is the degree of consensus about some actions which will really will move this field forwards. I think as a field we quite often struggle as you've experienced to to come up with clear definitions but actually if you ask people what needs to be done to improve the experience of the Scottish population in terms of living with advanced disease in being supported to make the most of their time to die well and to be supported in bereavement we've actually discovered there's quite a lot of consensus around that and one example it's a small ticket item I would suggest is that there's a huge amount that can be done if we promote public awareness, public understanding of the importance and value to themselves of learning a bit about decisions and choices towards the end of life and in thinking about whether there's somebody who wants to make a bit of a plan to have a discussion with their GP about what they might like should their healthcare deteriorate. I think we've really only just started to explore the potential of working collaboratively with the Scottish public and I think if we can start to do that through some promotion of a more open culture of discussion then there's huge scope for improvement and all these barriers that I know you've explored extensively about whose job is it to start the conversation and when well if we as professionals and public are able to be a bit more open about these things and it becomes a bit more normal to have discussions and to do a bit of thinking and planning ahead then those barriers and difficulties will start to move away and that needs some investment but it's not a vast investment that's required to do that sort of public awareness work and there's good work happening as you know with good life, good death, good grief and similar initiatives. Just quickly to pick up on Mr Doris's point I mean I think there is work on going to articulate qualifications more clearly so people can use you know the the credits from their svqs that they may do if they're working in a care home or a care at home setting towards their social work qualification or similarly there's there's we're looking at nursing pathways again however that almost tends to reinforce the sense that you move on to something better I actually want us to value the people who provide frontline care I visited Sweden some years back and they are visiting children's homes the people that work in children's homes there are their highest status qualified remunerated people they have to do a social work qualification and then a qualification and training in residential care in other words they've turned it upside down they just you know so they can't quite understand why we see people who work in residential settings or in social care as being the kind of lower level of the workforce so my only reservation is that we continue to reinforce the sense that social care is something you'd want to get out of and move on to something better whereas actually what we have to do is to reward and value those roles more strongly with Mr Fordson briefly. Mr Doris's point I suppose about internal gradings within home care I mean I'm sure this is work in progress but you know without turning home carers into specialist palliative care workers I mean we have to recognise the new world of integration and the fact that health and social care are coming together and key areas like medication administration of medication which at the moment home carers can't do but if they were properly trained and graded and if there was an agreement which would free up nurses an agreement with trade unions or whatever that's certainly something that could be looked at rather than them just being able to prompt people they could actually administer medication. Just on this way I mean it isn't just about the wage rates or the status of these people is it I mean you know it's an adversarial system the private sector's involved the third sector's involved in social care and care in the community the idea that you would say in the health service you've only got 15 minutes with that person the continuity of care that well you can you've got a chance to respond Beth if you know the 15 minute visit the ding of the microwave you know that you know that there's limited times with people you're caring for or or indeed continuity of care where you can have 15 20 25 different carers and it you know that that type of a disorder system would not be tolerated in the health service so it's not just about you know value in some individuals at the bottom but this is there's two systems operating here which which one is heavily regulated and the other is less regulated is that not? Less regulated it's I mean this is all down to commissioning it's not that those providers are choosing to provide 15 minutes most of them are fundamentally opposed to it but it is the fact that and it's a real sadness particularly around older people's care because of the higher volumes that we've got compared with learning disability compared with childcare because of the higher volumes we want to offer each older person less and we want to get it for less money it's to do with trying to make stretched budgets go further so what do you do you dilute the amount of time it's to do with commissioning I you know the problem could be solved if there was a will to do it to say well actually we want to we want home care workers to spend more time with the person you know that's that that's to do with what the the commissioner which is usually the public body is saying it wants people to deliver actually if if the if any of these independent organisations that are delivering home care overexceed their hours they get penalised if they stay with mrs smith and don't make it to mrs jones in time for the next 15 minute visit they get penalised actually and and so you're right to say that it's if you want or you I wasn't quite sure what you were mean by the adversarial it's certainly a system which doesn't isn't needs-based um and where the constraints are to do with the the the available funding for for for care and as I say it disadvantages older people by comparison with every other group of of of service users you know in terms of run-offs quite clearly laid out the the issues behind behind 15 minute visits and I don't I don't think it's helpful to to character characterise this as you know a problem that's present within one part of the system and not not within the other to any degree and you know the point here is about the amount of time that is required to deliver the outcomes that we want to see we're trying to move towards outcome based commissioning that said that takes place within a resource envelope which is becoming ever ever tighter the the pressure that social work budgets are under and have been under for a number of years now it's just simply not sustainable and I think several times throughout this session we've talked about the need for a wider debate around that that is the elephant in the room and we're starting to see the the impact of of that um at risk of of just repeating myself and coming off the the topic around palliative care I think um what Mark was saying earlier about a public debate around a willingness to to talk about a grace or willingness to talk about death and dying as being a cost effective route into addressing some of these issues that I have to agree but I think we also need to ensure that that debate focuses on the the fundamental issues around how much are we willing to pay for care because the amount we're willing to pay for it at the moment is is producing the outcomes that we're we're we're here concerned about today. Yes I've been sitting good morning sitting fascinated with both David Carroll and Ronald Mayer's comments and basically Mark Hazel would cover the point I was I was going on to and I think we really have to the point that Beth Hall was making and we have to really have a possible reassessment we do a good job but maybe we need to look at how we're providing and whatever and can I even throw in that we've got a lot of ex-nurses out there who have left and could do this job maybe have a family could come back into the the setting that Dr David Carroll was making but can I move on to the main question I was going to I had to say that to convener my apology public awareness and information and Mark Hazel would cover it slightly we've all been in the setting none of us like to talk about death none of us like to talk about what we're going to happen I nearly laughed to Dr Carroll about you I don't think you're old and basically you've got a long please stay we need you we need you as long as we can but basically the situation is that a lot of people don't want to talk about death don't want to talk about what's going to happen if they move into pallative care so how do we raise public awareness how do we inform people how do we you know how do we move this cultural shift in scotland in order to get people to talk I've made a will I made a will years ago my my son knows how what my son my daughter know how I want to be committed or how my service is going to be etc etc etc but a lot of people and I my mother-in-law father-in-law when they were unfortunately getting to the end of life didn't want to talk about it didn't didn't want to discuss it you know so how do we involve people how do we set up a campaign how do we ensure that people get what they're doing pallative care and know where to go for pallative care mr forms I suppose in addition to the the kind of public awareness campaigns that mark was talking about I suppose to answer Richard's points I suppose one way is to I suppose recognise the and to get back to the person I suppose is the massive isolation that everybody facing you know terminal illness must feel even those with with a huge amount of family support and I suppose how we can get better at whether it's social work or health practitioners I suppose engaging with the community I'm thinking of things like use of social media I've come across a I've got a relative who's Tom Leal who's using a website called caring bridge which allows the individual to set up a blog so they can communicate with friends and family people out in the internet and it gives them back some control over their situation but but also in eastern Bartonshire we're working with Macmillan on a community assets approach so that we've set up a website we've got members of the public and service users to identify services and that are useful or just community facilities and they're all plotted on this website and people can customise their own kind of support plan but also it's the aim of that is to work with people who are currently living with cancer or other long-term conditions not just people at the end of life so I suppose that we can build a help people to build up networks at a much earlier stage by things things like peer support groups champions or whatever and so that by the time they come to the end of life stage I suppose they have a network of people who are going through similar experiences to themselves and they know where to go for advice and information Mr Hazelwood and then Mr Mayer yeah I just in response to your question should I suppose when you made a will you had an understanding of why that would be a useful and beneficial thing to do for your family and nearest and dearest and you had information about how how to start the process of doing that and you were able to overcome any of the barriers that there might have been for you to do that you had opportunity to do it and I think those are the things that we need to think about in terms of raising public awareness and getting more engagement in discussion so I think it's important to try and raise awareness of why it may be of benefit to people themselves and also their nearest and dearest to be a bit more open and to have some discussion and do some thinking and planning ahead whether that's making a will or a power of attorney or having a discussion with the GP about what what preferences people might have for medical stuff towards the end of life so there's an understanding of why it might be beneficial people just need more information about what the practical choices and implications of different choices might be and I think then people need opportunities to have those discussions and I referenced earlier about the fact that some GPs are very good about being able to initiate those sorts of conversations I think the last thing I would say is that I I think it probably becomes more difficult as people become sicker so I think this is some a process that should be started upstream and I wanted to reference two practical examples of the sorts of ways we can go about shifting and changing culture in Scotland I guess from each end of the sort of the life spectrum the first is some work which we've linked up nearly a thousand organisations and individuals in an alliance called Good Life Good Death Good Grief which is about providing information opportunities shifting culture and just normalising these discussions and planning processes and one of the organisations involved is Age Scotland and they did a really nice partnership with the consortium of legal practices called Solicitors for Older People Scotland and they did they got a lawyer along to do some presentations and just to encourage some discussion about legal planning ahead at some of their lunch clubs across the south of Scotland I think yes maybe there's an argument for sort of top-down public health campaigns and stuff but I think it's also really important that local organisations take a grassroots approach and they're more likely to know what's relevant and sensitive for their stakeholders and I think that's really important because circumstances vary a great deal and then I wanted to flag up some really good work which was done by Strath Caron Hospice but not in the hospice they did some work looking at running workshops with primary school teachers and with primary school kids in local schools and I think to paraphrase their experience to start with they found it quite difficult to get access into primary schools I think schools were wary and scared of a sensitive subject but I think once they were able to start to work collaboratively with the local schools that attitude changed enormously and actually they were invited in to work into other schools and if you look at the statistics for example about the number of pupils within a school who are likely to have suffered a bereavement of some sort it's a really high percentage so the idea that if you don't do proactive work to support children and staff to deal with issues of loss in schools if you don't do that you're in some way avoiding a harm because people will be upset if you do it that's not the way to think about it these issues of loss and bereavement and people nearing the end of life are impacting on students in our schools and on by implication on our staff and we need to be making sure that these issues are there that staff are supported and that the kids are encouraged and supported to talk about these things and I think probably the experience is that often children and young people are much better and more open about talking these things than those who are set towards the other end of the spectrum are. I appreciate that. I mean I'm with Mark in this almost entirely I think it's about encouraging the people people to to regain ownership of dying. I mean when I was four or five my auntie Gertie came to stay and was for three or four months was in our front room and died I didn't know the scenario that that was the plan at the time but it meant there was some first hand experience of dying and some within the family life and as part a normal part of family life I do think we have somewhat distanced ourselves from you know from that immediacy of ownership. Of course we need all the professional services where we represent the professional services and not we're arguing against that but we actually have to allow people to feel ownership and control of of of that experience and for it it's not something that has to happen in a hospital in a care home you know somewhere else it is actually part of part of family and I think there is an engagement of the of the public to take place politicians have been pushed recently on whether they'd open their house to refugees maybe we should ask politicians whether they would have somebody die in their home. That's enough for you. Can I thank... Can I ask you is part of care readily available to all who require the service at this moment in time? I'm going to come back to the very first question that I was asked we're speaking back to this horrible thing definition people think of palliative care as arising in the 60s with the hospice movement and cancer no it didn't general practitioners have looked after people with palliative illnesses they weren't called palliative illnesses because the word hadn't been invented but by definition general practitioners have looked after patients with incurable life-threatening illnesses from the onset of the health service so the answer to your question is yes palliative care is readily available accessible however because everybody in should be registered with a general practitioner and therefore have access to a primary care team so that's the theoretical answer what I cannot say however is what is the quality of that care what are the additional components that would support the person their availability I don't know that could be variable across the country I think the bigger question is how available is specialist palliative care to everyone who does not have a cancer diagnosis thanks very much for your oral and written evidence but if I can just pick out in particular grasping the nettle no disrespect to the other submissions but that's obviously a long submission which I hope the government will pay attention to and just ask a couple of questions related to that one about health and social care partnerships because all the relevant players are sitting there today and there's quite a lot of interesting recommendations I don't think I've got time to read them all out but things like an identity identified lead for palliative and end of life care make sure you include it in your strategic and operational plans and so on it's recommend action points 8 to 13 in the grasping the nettle report so I suppose my question is to what extent do you agree with the recommendations but I suppose more practically and more immediately to what extent is this being discussed because you're setting these up at this very moment and they're going live in a few months time so to what extent are these issues being taken on board currently as we set up the partnerships because clearly that's going to be one of the responsibilities of the health and social care partnerships I think there is act of discussion at a local level there there are some continuing concerns that not all the new partnerships have fully engaged both the third sector and the independent sector so there are there are there's varying experience of to what extent there is full inclusion of all social care provision within the within the work that goes on however I think I think people do continue to see palliative and end of life care as an area where in a sense it's their only first given what we've been talking about but where there are some gains to be made in terms of shifting the balance of care that I think it is still seen as an area where if we could promote the care both in the community and in homely settings care homes and hospices there are actually gains in terms of easing some of the pressure on the on the on the acute sector the harder part because the mechanisms aren't fully there even within pooled budgets the mechanisms aren't fully there in terms of getting the corresponding shift in resource that's that's required so you can have people saying strategically in terms of the strategic plan this is the direction we would like to see but actually getting the resource shift to happen at the same time is is is more problematic yeah I mean again I'd like to agree with much of what what Ronald has been saying I mean in a sense the the purpose of health and social and health and social care integration is to grasp the nettle of shifting the balance of care and now recognising that means a much broader range of things than than what we've been focused on today but palliative care and supporting people who wish to die at home or in a homely setting is is very much part of the shifting the balance of care discussion that partnerships are having right now. Dr Carol just to say that in NHS Grampian we had our original meeting a number of weeks ago with all the relevant parties as a result of that meeting we have identified priorities that we need to look at and there will be a series of subsequent meetings again with health and social care and third sector to pull everything together so it's ready for me April. Okay well I think those were an interesting recommendations from the report just one other brief question on the report which again was interesting uh rhanald mayor referred to rights based approaches in the new care standards and obviously they've been more widely talked about and indeed legislated for quite recently but again grasp the nettle says rights based approaches can be helpful in raising public awareness and understanding of what people can expect to receive but framing policy in terms of people's needs and the outcomes we want to see as an alternative way of providing clarity about what people should be able to expect so I just wondered I suppose it's to mark his that would really watch what the report had in mind it might almost be seen as a criticism of rights based approaches but perhaps that's not what's intended I suppose in pulling the report together we're mindful that in many policy areas now there is an increased emphasis on rights based approaches and I suppose what we are just flagging up in that paragraph is that yep there are there are positive positive aspects of a rights based approach but I'm just conscious of the discussions that we've been having about the need for a wider public dialogue about the resourcing particularly around our social care services and I think it was Jeremy Bentham who said that rights were nonsense on stilts and I'm not wishing to subscribe to that view but I think we have to be careful about it's quite easy to ascribe people a right to have really excellent power to an end of life care and I don't think I think we have to be cautious in doing that without having the serious and important discussions about the economic resources required to deliver that I think that that might be circulating somewhere soon okay do you have the people Mr I mean just to sort of enter that I suppose in that in the way in the same way as we're moving from a sort of you know medicalised approach to one that's much more reflective of of the wider holistic needs of people and the needs to involve social work, social care and voluntary agencies I suppose maybe the next stages more about empowering the individual and putting the person at the centre and I mentioned earlier about the use of self-directed support which I think is confined to social care at the moment but could be looked at within a health context as well I suppose about helping people to to self-manage which I know is a big thrust for you know the big voluntary agencies in in in this area and I suppose just allowing people to get control you know I mentioned social media but but also the feeling that they they have a say in how they put together the care and support and who comes in and what they do to them was at a meeting of the Scottish Older People's Assembly and was challenged on the use of the term outcomes they were saying that they felt this was a term that had come increasingly into use and but was fundamentally vague they because they felt it was neither clear what was an entitlement nor what was an aspiration it combined elements of both and they felt that we should be clear at any point in time what is my entitlement what have I got a right to expect from what are your aspirations for me not that both aren't equally important but we should at least be clear and we shouldn't roll them up into a term which actually then convey a sense of vagueness about about what is being committed so I suppose for for me in terms of pallidive and end-of-life care we should try and be clear what are people got a right to expect at any point in time but equally what are our aspirations for end-of-life and you know our that dying well is combines elements of both of those things entitlements and our aspiration for people I'm very happy with the concept of self-care self-management but I'm going to go back to those figures that I gave you from NHS Grampian 70% of the population died at the age of over 75 so their ability to self-manage as their illness is unfolding is dropping all the time and then it becomes a nonsense to suspect or suggest that they self-manage and I often wonder I get uncomfortable when when it's always there on that triangle with specialist services at the bottom self-management at the top sorry self-management at the bottom yes self-management is important but it's not going to continue all the way through that illness. Thanks Malcolm. Bob Doris. Thanks, convener. I know time's almost upon us. I'll try and be brief. I kind of want to focus on the care home sector a little bit but before I do that because I maybe just read something from grasping the nettle in the executive summary where it says people the strategic framework for action people receive health and social care which supports their wellbeing irrespective of their diagnosis age social economic background care setting or proximity to death each individual's care may look very different and I'm trying to how that how you can bring that to life if you like in a social in a social care setting. I suspect there is quality palliative care taken place in social care settings every day of the week they might not call it palliative care because what they do is care but given the various complex needs and competing needs that there are in the social care sector and the residential setting I'm not talking about nursing care I'm talking about the various needs and the general residential sector for older people I'm just wondering first of all do we document anywhere what we actually do well because there is good work going on and that would be palliative care or do we tend to just like we go that's the last year of life something clicks in that's a tick box right let's document what palliative care services look like and are we missing a trick layer but I suppose the substantive question or something like to reflect on is in terms of aspect with Mr Mayor mentioned aspirations in relation to palliative care irrespective of resource issues irrespective of staffing issues is there a period of contemplation if you like that residential care homes may go through and say well if we could do more what is it we would like to do you know whether it's hoisting someone into a bath twice a week rather than once a week because that gives a therapeutic benefit to that individual as it may be allied health professionals who used to come out when they were at home but tends not to come into it because it's winter in the residential care setting things change a little bit so I'm just wondering are we documenting what we're actually doing well to a degree in the care home setting but are we doing that aspiration thing are we just a little bit scared about the resource issues answer the question but I wanted to say what I'm going to say before randald answered it I'm delighted you've asked that question because all the time we've been here we have been essentially speaking about illness deterioration and dying palliative care is also about living and we sometimes I think forget that people are actually living during their palliative illness and that part of the care that we should be trying to offer both particularly social but also from medical is to maximise their quality of life let's hit as many bucket lists as we can for these people so that's all I wanted to say because that's the essence of what you've asked and I'm pleased you've asked it likewise certainly it's a it's a kind of key question on the one hand I think if I'm being honest there has been a danger of a one-size-fits-all approach to care of older people in in care homes there has been insufficient diversification of styles and models of care within that and I think there needs to be more and there has to be much greater emphasis on person centeredness so that the individual one individual's plan needs to look quite differently from somebody else's we have the building blocks of that but we've not gone the whole way even the the government stocked short with self-directed support of saying it didn't fully apply to residential care there are some pilots taking place at the moment to test out to what extent it could self-directed support could fit with our model of residential care so we actually have to be aspirational in how we move this forward to say that not all care homes should look the same there shouldn't be a one-size-fits-all approach there should be very individualised care plans and pathways and that should include you know the discussions with people in terms of anticipatory care planning not just in terms of what they want the end to look like but actually what they want the bit before the end to look like that's the more important bit I mean with David on that point I mean that actually a lot of people who go into care home some people who have been told that or their families have been told that they may only have a few weeks actually do I mean some element of recovery and have more time important that that time is spent not just waiting for the end but actually time that's spent to add add quality Mr Forms and part of our panel's talking about about keeping the person of the centre for as long as possible and responding to Dr Carroll's point about the fact that people inevitably deteriorate and maybe are less able to be actively involved is things like anticipatory care plans which don't just focus on medical aspects and treatment and withdrawal of medical support but but very much focus on people's social psychological lives also the use of advocacy advocacy organisations who can continue to speak for people even if they lose capacity and we mentioned earlier about encouraging as many people as possible to to take our power of attorney to encourage people to become guardians if people lose capacity so there's a number of ways we can we can retain the person at the centre beyond their ability to actively do that for themselves I thank you very much for your attendance and your participation and asking all of our questions and answering all of our questions and giving lots of food for thought this morning thank you all very much for being with us this morning we'll pose at this point and as we turn around and take our next witness panel thank you very much right we will continue our evidence for a politics of care inquiry which is the second panel and the last day of evidence and can I welcome to the committee Ms Sandra Campbell, McMillan Nus consultant for cancer and politics of care royal college of nursing, also Dr Ewan Patterson royal college of general practitioners Scotland, Maggie Grundy, associate director nursing and midwifery NHS education for Scotland and Professor Rob George president of association for palliative medicine of Great Britain and Ireland medical director of St Christopher's hospice association of palliative medicine welcome to you all and we'll get in the interest of time we'll go directly to questions and their first questions from welcome chisel about recording systems I think this was something we didn't really cover in the first panel but you're all ideally suited to answer it I suppose I suppose the first issue is really particularly I suppose to the royal college of GPs is about the palliative care register because we've heard from various people that there's a problem of identifying people so I suppose there is a question there about how well GPs record those who would benefit from palliative and end-of-life care but if I'll just roll up since we're a bit short of time I'll roll up my whole question into one because the other recording systems that we read about in the evidence and so on is the emergency care summary, the electronic palliative care summary, the key information system and the anticipatory care plan and obviously there's just an issue about clarity around how all those systems relate to each other and when they're put in acronyms of course it sometimes gets even more confusing but I suppose it would helpful if we could have some clarity around the relationship between those without labouring the point I suppose also improvements that could be made to make those systems work better so I'm sorry that that's rather a lot of issues in one question but it's really saying something about the registers particularly from the royal college of GPs but broadening it out to those other recording systems for everybody else. Yes, lots of different things there. The palliative care register probably there for me the biggest issue as a GP is it's back to this awkward thing and I came in for your previous discussion about how you define this stage and I think that's an extremely awkward issue how do you decide if somebody should be on your palliative care register. I think one of the problems is that we struggle to really come up with a working definition of what palliative care is and who it is for and if you can't do that it's really very difficult to work around the edges of that for me I guess it's there's little if any well there's very little it would separate my mind good care from just from palliative care palliative care is just good care for people who happen to be dying and I would argue that the dying side of that is when that individual's death becomes relevant to that individual and that's the real crux of this and that's a very personal matter for individual people so some people will embrace the idea that they aren't actually dying at a much earlier stage in others I've looked after somebody recently with hemotoneurone disease who was incredibly reluctant to accept the fact that death was actually inevitable that was how he dealt with it I think sometimes for us it's our role as healthcare professionals to try and explore with people the fact that we believe that they are now at a stage where they should be considering the imminence for whatever however we define imminence of their own mortality but they may be reluctant to do so themselves it's a very complex area if we can deal with that then it becomes easier to to put people in the palliative care register historically and although we've been keeping registers now for oh five six years maybe the proportion is still heavily weighted towards people with the cancer diagnosis I would contest it that's because people with the cancer diagnosis are far more likely to be willing to be considered as palliative and that then takes to some of the points that Mark was making particularly about good life, good death, good grief if there's one big hit here it would be to get the population on board with the fact that you're born, you live and you die and it's an uncomfortable reality but let's make the best of it and I think that's that's that would be my one big issue with that moving on from that and I could talk for 45 minutes in the palliative care register I will move on the various different systems that we've got the the the elect the emergency care summary is just an upload of some key demographic stuff your drugs analogies from GP systems so fundamentally all these things have been lifted from general practice systems it's only what we put in it's ours it's our records that you are accessing the other people are accessing and we need to be mindful of that before we think that it's something far more than it actually is so the ECS is for every day every day more or less given informed consent I will use inverted commiser in the words informed for that one because I suspect most people don't know they've done it the the electronic palliative care summary is probably lapsing now it really has been taken over by the key information summary the key information summaries that I would just focus on that one it it is attached to the ECS so it gets uploaded out of our records along with that and carries far more information it's got five separate sort of subheadings one of which is palliative care and you could argue that the people are if you're adding data on the palliative care section then maybe you're beginning to think that the person's mortality has become relevant but not forgetting that the key information summary is used for far more than just people who are dying so it could be used for anybody with any significant condition whatsoever and again but it is reliant on the information that we as GPs will input into that because currently more or less GPs are the only people who have what I would call right access to this. There's lots of people who have got read access but we're the only people writing into it. Does that help? Thank you Professor George. Thank you very much. The two points I guess that would be important the first is that and I suppose just to come clean on what I think palliative care is I think palliative care is looking after people rather than their pathologies and I think it's engaging uncertainty and I think it's engaging suffering and I think it's engaging complexity and so as you and said that runs through the thread of everybody's life and there are certain points to which this comes in and it becomes more pressing as death starts to come up on the horizon and that may happen intermittently particularly with the longer term conditions or frailty or multiple comorbidities what I would sometimes call practising dying. My mother does it about every six months and has been doing for the last five years managing those difficulties are very real and the only way really that I think the complexity of the healthcare system and the social care system can keep on top of this now is by making sure that the systems that we record in talk to each other and so having portals and all those kinds of things in there and we engage this whole question of whether we had a palliative care register or whatever in London by calling a coordinate my care because actually when it became relevant was when there was the need for coordination and for people to be able to manage the uncertainty when somebody might suddenly becoming into hospital or might have a particular view about what they did or didn't want to happen in their care and that the ambulance crews or whoever saw it didn't do what they that person didn't want so in a sense it was specifying more what the limits and refusals were that a person had in in their own particular radar and certainly in the institution I work at the moment we are looking now to joining our own hospice based electronic system to the primary care system which is the main one that's in south London so we will effectively being doing what Ewan has said which is we're docking in to what is essentially the primary responsible clinicians patients care and that's the general practitioner so to my mind it all has to focus in on the primary care record and we may or may not have right rights we certainly should have read rights and of course the day will come in the not too distant future where people themselves will have a determination over who reads their records because actually a person's records belong to them as well and so we're looking for example at people having tablets where they are they have the access to their own clinical records as well and can contribute to those and of course the advantage at the moment is that there is sufficiently rapid growth in the electronic world particularly in on the web platforms that it is within our reach for people to have multiple access points and to be able to dock into portals and suck data down and put data up into various places all the security issues and so on apply but you know we seem to do it with money so why can't we do it with healthcare I think that that if there were one thing that we really had to pay attention to it was this ability to read what everybody else is doing and doing it in real time and and ambulance crews when a call goes out to know that within three to five minutes they have a care record on in their ambulance which says what this person is likely to be facing and in particular what they do or don't want to be done really makes joint decision making and personalised care real. Anyone else? No, that was a very useful recommendation and should that should that apply to the anticipatory care plan as well it would sound as if that was relevant. I mean another definition for palliative care is it's anticipatory planning in real time because we spend a whole time revisiting people's priorities every time there's a clinical intervention every time there's a task met then there's another piece of anticipation that has to apply so in a sense palliative care is anticipatory planning in real time. Just a final point to dr passen I mean do you think that given that well recognising the needs of cancer patients and they're not all met that there is a particular issue with those who have other conditions I mean should gps be making more effort to ensure that their registers encompass the full range of people who might benefit from palliative and end-of-life care? Yes, should gps be making more effort I'm sure we should be making more effort in lots of things I mean I suppose that is another issue which is competing priorities and one of the things that has surfaced before is the issue of resource and so on and let's be very mindful of the fact that currently general practice resource is in pretty short supply and getting shorter so there is an issue of workload and workforce that needs to be recognised I'm conscious you'll have seen this thing from the from RCGP I think it's we're back to though to really start to identify other people that are more of the other groups of people with long-term conditions or old age frailty decline to kind of put it on to one sort of subherring we really need I think the societal buy-in to accept that these are that these are big deals that these are big issues that the things that get in the road probably are patient awareness personal awareness of the enormity of what they are facing and then acceptance of the enormity of what they're facing if I give somebody a diagnosis of cancer or confirm the diagnosis how it usually is they kind of start right down at the bottom and then hopefully come back up a bit as they realise that other things can be done but if I say to somebody my goodness you know this is actually it's your your breathlessness is because of heart failure they're likely oh goodness thank I thought it might be cancer what a relief and it's actually quite difficult then to to you have to unpick that and and as Rob said that the uncertainty that is inherent in long-term conditions and old age frailty decline dementia makes the management of somebody very very very difficult indeed and they can flip between oh last hours of life to oh months if not more of life almost in the blink of an eye so it is and people may not be I mean you know we use the surprise question to try and populate registers would you be surprised for this person to die in the next year I've got a 94 year old mother would I be surprised if my 94 year old mother was to die in the next year no because 94 year olds die would I be surprised if she didn't die in the next year no I would not be surprised the lady is still buying her sherry by the case you know she's doing well um so you know it's it but it she would love to be in somebody's supportive care register but I would get a flea mirror if I put in a pall of care register okay thanks that's very helpful you know just getting back to that definition we've had some discussion about with the previous panel as well I suppose the discussion around about the definition that doesn't trigger certain actions or elements of support so the definition does become important if it's described or you know within the new pall of care strategy because it can lead to a referral to additional support or not in in some cases whether those people want to be on that on that panel or not and it can be a gateway it could become a gateway to access so it becomes important in itself maybe bureaucratic you know but it doesn't take account of those those differences in human beings and how they face life that in the situation it's a life changing situation yes but I think I think the people that we are caring for people we are serving are facing enormity all the time not just about whether or not they're dying so it's it's an enormous big deal there's a tremendous lot of human suffering out there which we are dealing with or trying to deal with and help with in a day to day basis for me there are really only two things in my mind that separate out pall of care from good care one is the fact that it is an enormous deal because you only do it once and I'm not being flippant at all about that that's how we navigate our lives through the important events one of these is death death of loved ones so that's important and that separates it from the care of somebody who's anxious say but apart from that the only thing in my mind that really separates out is the fact that and again the previous panel touched on this is that as one fails the ceilings of what one is being offered of what is appropriate begin to lower so one moves away from being a transplant candidate when moves away from being an hdu admission candidate when moves away from being a cpr candidate and so on and so forth until finally you're down to one will move away from being a anoral antibiotic candidate towards the end of life so it is this gradual lowering of the ceilings of treatment or intervention I would contest is the only thing that separates out apart from the enormity from just good care spoke to last week and everything so you know the access to some of these things was at a crisis point rather than earlier they said which had some of this support earlier it was at that crisis point when it kicks in and then suddenly you've got this all of the interventions and you know cost doesn't matter you know all of the interventions you're squeezed into that last couple of weeks or months you know not because we are encouraging people still to put in the separation between care and palliative care and so until you reach that bridge you don't get it rather than just needs base care which is what we really should be talking about I think again Rob talked about two minutes ago but some of those people were saying that they felt they were being passed along they had a lot of faith in their GP and you know before you know that happened then they were passed on to the consultant and they passed along until you know that day we can't do anything more for you you know and you're passed on again now that you know so they have been through the process that the people we spoke to last week and and while they were cared for by their GP and then the consultant and then the radium you know in cancerous patients right along that look they felt as if they were being sort of passed along within that context they're they're wider and their wider needs or support was not made available until they found their way normally well last week it was word of mouth that found them a specialist hospital services Professor yes of course I'll let anyone else see what you're seeing one of I mean that this is a really important point and I think that that and listening to the previous evidence and also reading some of the evidence that we are at a tipping point in society I think I think society has to change the way it sees care the way it sees mortality the way it sees responsibilities that we have one to another so on and so forth and within that as well is is is the role of this peculiar thing that's being come called pallidive care and you know in a sense it's an existential crisis that we have to define who we are in order to know who we are and then it just becomes a problem fact of the matter is that there are certain expertise that I have that that are useful at various points in a clinical journey which may be applicable and what's really interesting is that there's this in recent studies which you may have heard of already of early involvement for pallidive care early referral to pallidive care in lung cancer and it's also in a number of other diseases now where not only do patients get better experience they live longer and that primarily is because they're getting choices we're probably not poisoning them and and actually they are living a life rather than dying a death and this idea of being passed along like a place of cakes until there are just a few crumbs left and that then becomes pallidive care I think has got to stop I think we've got to see helping people to complete lives helping people to live lives until they die and the practicalities that go along there and of course just going back to the electronic registers let's say for the sake of argument you and had a problem with a patient and he referred that person to me and I happen to be the clinician involved I can see that data from the prime from his own primary care record and actually I can contribute into that or not contribute into that so it stops becoming over on the register to be oh this person needs to be seen over here but this is their body of electronic record or or the data that's gone on so it's starting to break those barriers down to have a much more fluid way of doing things working across disciplines between health and social care and within communities and I think that's the direction of travel that we need to be looking at it's really quite radical I feel I'm conscious that Sander and Maggie haven't come in here so it's under I think the core of what we're discussing here is about communication actually and it's not just communication with patients and families it's communication between teams and but the very important thing I think that we miss sometimes is the conversation happens that very sensitive conversation around what is actually happening what we expect to happen or anticipate might happen with that individual and their family happens a step too late sometimes we need to be able to have that conversation perhaps a bit sooner on the journey which would avoid people feeling their past from pillar to post I accept that there are certain investigations in certain stages people need to be through go through but we need to have honest communication along the way with those with those individuals and we need to introduce the concept of thinking ahead or advance care planning anticipated care planning perhaps a bit sooner than sometimes is the case for for individuals and I think if we can do that now it's not the be all and end all but it certainly would help to enable teams to put things in place perhaps a bit sooner but also allow along with the dying is the living and people in society we have you know our older people now have fewer there are younger less children should we say families are smaller there are fewer carers available to be able to look after our family members as they are on a declining trajectory so we need more time we need to be able to have the conversations and allow people to be able to plan in a safe and effective way so that people get the best outcome and it is important because outcomes as well because what we want for everyone is that ability to live as well as possible for as long as possible and be able to achieve what they want to achieve if we don't have those conversations early on enough in that journey where it's possible to do so then we deprive the individual and their family of that ability to be able to fulfil whatever it is they may wish to achieve in that time. One of the speakers earlier alluded to or brought in the conversation around the funding you know that the self-directed payments are supported payments etc that is all very well when there is enough time to plan around that but unfortunately in many cases the patients and families who have life limiting conditions there is not the time to have those conversations so it's a balance actually about how we provide that support and provide the appropriate funding and resource for each individual case and really get person-centred care on the map and not just care package or a typical care package each individual will have different needs and the only way we will be able to ascertain what these needs are is by a complete holistic assessment at appropriate stages on the journey with appropriately trained individuals be that health or social care so I've waffled on a bit I'll stop here but the key message is around communication. Dr Palatyson did you want to come in on this point? I would agree with Sandra actually it is all about communications but I think there's a wider systems issue as well and it is about the communications between professionals but the perception of palliative care is not understood by all and people will need different levels of palliative care throughout their illness and towards their death and they may not need they will need more or lesser support depending on where they are but we do need to focus on that holistic assessment and what the person's needs are at that particular time I think rather than actually getting involved in registers and who's on the register and whether that actually is the entrance to palliative care there is something just about not getting focused too much on one thing and how we help the system to join up and actually speak to each other. Dr Palatyson? I suppose it's really just reiterating and commenting on both these my colleagues comments there is that it's back to what people perceive about palliative care I still struggle slightly I think that we're and David was talking about it earlier but the fact is actually it's just good care people should be involved in the decisions about their health irrespective of whether they're dying or not the sort of care that could get somebody who's depressed or who's got asthma is the same as the sort of care I give to somebody who's dying except the person who's dying there's a couple of things like CPR say that they may be not are going to be offered but they should still be being supported and I mean I suppose beat this idea one of things and it didn't surface where I suppose it's just I'm bouncing into one of my great concerns which is that we're talking a lot about what we do to and for people but I think there is a huge amount of what we do just simply by being with people when they are ill and I think a large chunk of my job not just in palliative care but in careful stop is a term lifter for my own Ahita GP in London who she she talks about a role of witnessing people suffering and that is critically important when people are dying and you just be with them not doing anything to them or for them but just being with them or in the case of my last MND man who died to I have his permission his family's use of story as we as I was with them I was helping him smoke because he couldn't do it for himself anymore and that's about being with somebody at the end of their life and I think we shouldn't ignore these and all these in the systems things. Rhoda Grant. Can I probably move on a bit from that first panel and indeed yourselves I mentioned you know where this care takes place and what's quite clear is it takes place in normal care settings at home in the community. So I was keen to ask about training because that seems to be and again Sandra Campbell said you know a suitably trained professional a lot of the people carrying out that care won't be suitably trained because there won't be specialists in the area there'll be generalists who are supporting people at home or in the community or whatever how do we make sure that the people doing that are properly equipped with the skills and knowledge to allow them to do it because some people will be reluctant to raise issues not sure how the patients going to react how do we make sure that people feel confident in that situation and are able to give the support they need to give to people in that situation. It is an issue and we know that communication comes up all the time as one of the areas that's not done well. We've had lots of initiatives in terms of communication skills training over the years it is incorporated into undergraduate education for healthcare professionals and a lot of effort has gone in in recent years into improving that. One of the things we perhaps don't do as well is in terms of people who are already working in the system and qualified professionals who perhaps maybe haven't had the same input into the communication skills at an early stage in their education and I think often our reaction is let's put everything into undergraduate pre-registration education but if people actually get into the system they can be very quickly socialised if what they learn in practice isn't actually part of the system and isn't actually used in the system we did a literature review a few years ago looking at what the barriers were to using communication skills when people had actually been on training and one of the issues was the ability not to be able to apply it and not be able to practice when they get into practice so in terms of communication skills and helping people who are not specialists and are generalists it is about how we actually help people to build their confidence their competence and actually have that ability to be able to use their skills in practice and that is something that is quite intensive in terms of training it can be done but it would need it is about how we facilitate that in practice we have got various we have got various sort of tutor training courses for facilitators for communication that could be employed on a wider basis we have lots of pockets of good practice but they're not consistent across the country so it is about thinking a little bit more creatively perhaps about how we can make communication more applicable in practice and help people to use those skills sorry that there absolutely needs to be it's about levels of of education and levels of knowledge and a consistency to that as well so whether it's health or social care for example you know very often it is you know it will be unqualified staff who are on the on the front line if you like managing patients at the very end of life who may be asked very very difficult questions and putting very very difficult sets of circumstances and may feel really ill equipped and that is not that's not good for the patient obviously or the family but it's certainly not good for the staff member either so how do we ensure that we can have a consistent approach across health and social care for that group of you know for a certain level of knowledge and training for that level and then more advanced communication skills for the very complex decisions for example around perhaps to have a peg inserted or not etc a tube feed for example so there are different levels I've given two different examples there there are different levels and I think we need to have a consistent approach Scotland across Scotland there are as Maggie said pockets of different models of education that different boards adopt and use but a consistent approach would be would be helpful and beneficial I think I'll just stick I guess with general practice because it's the only group that I'm really in any way qualified to talk vaguely for even I think some of it is communication skills I accept that but I'm I'm unconvinced that that really is the answer I'll be honest there there won't be a GP under the age probably now of about 52 53 who hasn't undergone extensive communication skills training it's part of what when I used to do GP training I stopped for 10 years but I would probably spend about two three hours every fortnight with my trainee for a year on communication skills now that is a lot of time so there won't be a single person in this room sadly who's not had a bad encounter with the GP yeah everybody's in that boat no you've all had good encounters fantastic I I take I mean I'm conscious of me I think most people most audiences would disagree with that would be on my side with that one but it's not that gps lack communication skills it's for whatever reason we're not using them and why might that be I think there's several reasons for that one I think is this pure attitudinal stuff I would love to think that the the the level of care afforded to the retired GP at 69 who's dying of metastatic breast cancer is exactly the same as for the 45-year-old heroin addict who is dying of hepaticella carcinoma and cirrhosis but I suspect it's not I suspect it's not and I think the other thing is the systems that we then expect people to work within if you put people in the system where the environment is such that they are struggling to do the tasks that they have to do then compassion can get leached out and if there's all the stuff from down south in england where we don't need to go into that but that's what can happen I'm conscious even I mean I I love communication I love working with my patients I love trying to support people but I know that I will enter every surgery in most consultations unable to meet the demands of the people I'm trying to serve because of time limitation it's the same whether it's not just the microwave that pings it's the wee clock that goes around in front of me in the surgery but the patient can't see I hasten to add it's in my field of view but not theirs but I know that the time is is limited and and that affects the compassion of the care that we can deliver and that can then sap the morale of the healthcare providers because if you know you're not doing as well as you can do it it's not a good place to be I just really wanted to support that and and that is on the one hand our task is witness primarily and what comes with witness is a burden so burden of witness is a very significant morbidity in healthcare professionals particularly in dealing with these difficult areas and if we don't take account of that then we develop compassion fatigue and if if we are driven by outcomes that are not patient related and don't take notice of keeping us fit and healthy within the task that we do then we start a malfunction and what happens normally with burnout is the first stage as you start to disengage necessarily you distance yourself from individuals for no other reason than to protect yourself there are not mechanisms in place to support that and provide the debriefing and those of us who are in specialist practice we have clinical supervision as a matter of course that's really important I mean in terms of time it's depth of time and not length of time that matters so you can if you are very skilled have an interaction of five or ten minutes that will be more significant than an hour or two by somebody who is not skilled so skill is important but actually it is keeping fitness and health within the workforce in order to do the job well because we will do it more efficiently more effectively and probably more quickly because we're not frightened to engage the question rather than worrying about protecting ourselves in the process because we're so exhausted Mike McKenzie are you finished on that are you getting one one more entry to that because from what I'm hearing and I'm not sure I picked this right upright is the training is there everyone is trained all the generalists are trained what is missing is the time and space to have those maybe more difficult conversations with people and and also this I mean a lot of the work that I do is debriefing with colleagues from difficult deaths or difficult interventions or helping with a complex family so one of the clinical interventions I may be involved in is facilitating a very complex family interaction where there's a breakdown of relationship for example within the healthcare setup or the social care setup or within the family itself so there are those types of roles as well yeah I think there is education and there is training available who takes it up isn't already known and the impact of all the training isn't known what's not so clear is how people use those skills in practice once they've had training and for me that's the bit that needs the support is how we support people to change the computer program if you like because we are all programmed to say certain things at certain times and if you want people to have real conversations in depth conversations sensitive conversations then people need to be able to know when to use the right questions the right conversations at the right time and it's the support to be able to do that in practice and build up the confidence because it's only with practice that people actually develop those skills and that's the bit that we perhaps need to focus on more now. Tandre, did you want to add? Yeah, surely. Obviously there's been a lot of discussion around training around communication skills but there's also a lack of access to education around general palliative care as well so in specialist centres people will be highly trained but actually the vast majority of palliative and end-of-life care is delivered out there in the community or in the hospital by staff who unfortunately perhaps have not had access to education and that's not a criticism that's the reality and we need to be able to put programmes in place for existing staff to be able to give them the support to deliver excellent care. Mike McKenzie. Thank you, convener. I just wanted to explore what Dr Paterson and Professor George had been just a think touching on and it's about the pressure that the medical professions generally are under and I just wonder how much of that has been created by a kind of false public expectation that we all are going to enjoy perfect health throughout the entirety of our life and that we're a bit like cars there's a perfect solution for every problem and furthermore that that extends into palliative care that somehow there's a notion that it's a kind of gold standard that if you can get through the gate mark palliative care you're really you're still alive but you're actually pretty much in heaven and I was certainly struck when this committee undertook her inquiry into the assisted suicide bill that palliative care was describing such glowing terms and that whole near death process that I made the comment I think that I can hardly wait for that to happen to me and therefore I just wondered that how much of this is about the real pressures in terms of interventions that we can make better technology better treatment and so on and how much of it is public perceptions which are perhaps unrealistic but contribute to making a problem making you know intensifying the problem rather than helping with the problem I think public perception societal perception public has a huge role in all this and I think that in turn is often pushed by media who can have a very worrying influence sometimes in just what people think just you think of furor around the lcp to see the the damage that I would contest the media can do um healthcare professionals and I would say particularly doctors I mean I really I can only speak for my own profession here I think we are very guilty of of promogating that myth as well that we can fix everything um forever um and it's a dangerous one and it's a game that we've been playing in healthcare now for probably 60 70 years pretty successfully um but we're probably reached the kind of limit of what we can do in a lot of stuff like that um with regard to the the pallidive care side of things if people do require specialist pallidive care then it it is my my experience of my patients who've had specialist pallidive input say in one of the local hospitals say is that it is truly tremendous to do I mean it is it's fantastic um and some of that is because of the skill level some of that is because of the surroundings and some of that is because of things like the staff numbers um and my heart goes out and and rhanel was talking before to to the care home staff who are supplying lots and lots and lots of pallidive care um they don't even know they're doing it and they're doing it often extremely well and unrecognised with skeleton staff and you might have one trained member of staff on at night for 24 residents and somebody's dying now that's really good quality pallidive care and they're not given credence for that um so I think it's just it's kind of seeing that shift of focus away from the the the the heavens anti room and saying right actually no we need to think about this in the reality for far more people and and specialist pallidive care though it is very very very very good is still probably I would think more focused on cancer than perhaps the numbers would suggest I mean the numbers I guess would still be roughly about a third cancer roughly a third long term conditions and a third frailty old age dementia and I suspect that it must be 78 years since we looked at it in GGC where I work as a GP but 78 years ago um the percentage of people dying from non-cancer illnesses saying hospices was very very small indeed so it is about broadening it out and I think since Christopher's stuff of that are at the forefront of that I would say Anyone else like to respond to Mike? If I may, there are two things I think society and actually an awful lot of doctors think that patients only die when doctors stop treating them because otherwise they wouldn't be abusing people with monstrous interventions that are quite clearly going to make no difference and yet they feel better at having done it and and there is what I would call the dance of denial going on so there are certain social contracts we have um and I think there's a difficulty there and that's a cultural question that we have to look at very specifically and the early engagement of palliative care which I mentioned with the lung cancer stuff surprise surprise people live longer why because we actually promote their living rather than preoccupy ourselves with their dying and giving them treatments which actually probably are more harmful than beneficial so the harm benefit analysis that the finely balanced equation between whether an intervention is going to do anything or not depends on a much more sophisticated answer as to what's a benefit and what's a harm and that changes as people start to die to answer the specialist palliative care question being human entails suffering I think that's just a fact and for us to pretend otherwise is ridiculous but suffering is also a perception in so far as I know many people who are incredibly disabled who live very fulfilled lives and and the debates that we've had both sides of the border recently about assisted suicide has turned off and on on this question of perception and suffering and what people see to be that and often it's not we are managing the least worst but to free people from the proposition that there's a magical thing called a good death I think is helpful I think to look at a healthy death which is one that makes sense to that person in their context is important that it has to have cultural appropriateness but also some people do actually need to struggle as they die peculiarly particularly young people with young families and and and it the more you work with the suffering of people and and you will probably know this more than I do in a sense Sandra as a nurse and if you go into a care home the incredibly complex dialogue and interaction that's going on is a social phenomenon people die from a life not just from a disease and and it's engaging the reality of that I think that helps people to bring meaning and it's getting to the place of bringing the meaning into the situation rather than talking about spirituality or religion but meaning that makes the difference for folk and I think that that's perhaps where we've got a slight advantage in the specialty in that we've got the time the resource the motivation and the training to engage with what are sometimes very painful things and and at least worse can turn out to be very much a best often as not getting through the gate of a really bad time is anybody's read the death of Ivan Illich by Leo Tolstoy that's a well worth an afternoon's read it takes you into an understanding of the nature of suffering in a particular kind of way thank you very much I'll make a point of reading that thank you anyone else we'll move to our next question I think it's Bob Doris thanks you know apologies to be driven by process a little bit because the whole thing is about I know it's about how we care for people but earlier on at the start of this evidence session emergency care summary was mentioned electronic pallet of care summary was mentioned pallet of care register was mentioned key information system was mentioned and to speak your action plans were mentioned and overarching it's Andrew I think you're something communications and how these all interact with each other that I think of it in terms of how that then impacts on how resources are allocated to help with people's care because we know comes down a lot of it comes down to resources and time and we know this and I'm just wondering the pallet of care register when you've no one wants to find themselves on it but you know it whether your condition is your condition you may or may not be on the pallet of care register so I suppose the issues about whether that then directs more time or resource towards you when you go on it so I'm interested to know about about that of course but also other ways that you might go on the pallet of care register so for example if someone's in hospital for whatever reason elderly whoever and they're to be discharged their discharge plan put in place would someone is part of that discharge plan going is this person nearing the end of their life or whatever reason is it effectively is their pallet of care taking place even if it's called that or not called that it does that feed into a back channel should this person bought a pallet of care register or likewise in care homes when you're doing anticipatory care planning or care reviews in care homes how does that feed in because we know the gps the hub of it all but dr parson the cat we know they can't do everything you don't have the time to do everything so does it drive resources if you find yourself on that register or not and I suppose what are the other ways by which we we work with other people who have have missed missed out maybe the wrong expression who perhaps should be on it but aren't that's an opportunity to place them on it I suppose it's sorry it's process driven but I'm just trying to get my head round in public policy terms if we change structures how we do this many things there yeah I mean we get some very very good discharge from hospital where people be discharged home with the expectation that they are now facing death in some sort of immediacy that matters to everyone that might be days it might be hours days weeks months longer so there is that sort of thing and that's extremely helpful nothing makes my life easier as a generalist which is what I am is a one of my more knowledgeable specialist colleagues and whatever this one says that's that then I can do my stuff that's okay it doesn't make a difference to what people get I suppose yes I mean I'm unlikely to refer somebody for specialist part of care input if I don't think that they are dying so from that point of view but should it make much difference if people can sort of buy the model I'm suggesting which this is just good gear for people who happen to be dying I'm not sure that it does matter quite so much where the resources need to go I think that was part of that I would say in my mind one of the things that I've kind of got for me is a it's it's a it's lifted out of Maslow's pyramid of human need and I would start start down at the bottom there's a few core things that people need and I mean dead serious with this when they need things like they need a bed they need aids and appliances stuff like that but one up above that they need care they need people who are there abouts them whether it's their family if possible if they've got family or social carers before you even get involved with health and nursing now we're not in a situation certainly where I work where I can guarantee care for somebody who's dying my last man who died of MND and again I have his permission we could not guarantee the single man whose nearest relations were two brothers one in sky and one in york we could not guarantee him a night carer every night of the week this is somebody who is so paralyzed that they cannot move now until we get that right I'm struggling with the kind of the rest of the stuff because that's pretty core so I would say yes there's a lot of stuff there in spite of what rana would say and the people who are supplying that sort of job and cordial who are doing the care for that man we're fantastic and we need to celebrate what they do but we need a lot more of them and that's a macroeconomic issue I would contest because they they should I believe they should be paid a lot more these are people who are working with the most vulnerable and needy people I would say that we've got and we're paying them less than if they were stacking shelves in Tescos now that doesn't work for me and on top of paying them a decent wage and giving them a decent career structure we also should I think be looking at their personal attributes and I know that's a dodgy area to go into but people who are genuinely caring who are compassionate who are empathetic and there are big differences in people and there's some research on pallative care looking at actually a personality between pallative care and some other people and they're very different I think I am quite a caring compassionate individual I would be a disastrous surgeon I'd be full of anxiety and worry and should I cut that artery and stuff like this it would be it would be terrible so let's look for the right people and let's give them a career and let's give them a wage sorry that's a I was behind Ronald and I just so behind you were that you were cheering you were noted Professor George wants to respond to anyone else there are some data available on case complexity but I'm always very cautious about looking at any kind of calculus of how complicated cases are because of all the things that I spoke to you about just earlier on that that it's the humanness that's often complicated but if you can't provide a bed or somebody to care for somebody then that's pretty pretty bad and it's across our our nations that is a problem but there are ways of measuring case complexity there are ways of looking at the resource that goes with that but that tends to be once you get into the higher areas of of specialist practice rather than down at the basics and actually if you get the basics right I think an awful lot more in a utilitarian sense would be achieved. Anyone else Sander? Not everyone who is dying requires specialist pallet of care I think that's very important to say that yes the the surroundings and the the environment in which you know hospices function are fantastic but not everyone not everyone who is dying needs that type of care and it's important to differentiate between who does need so that those who really do need that have access to it when they when they need it regardless of diagnosis and I think that's the important thing and another point to make is there's been a lot of talk earlier in the previous session particularly about older people but there is a bit of inequity around the under 65 year old too although there are less people dying younger which is fantastic actually sometimes that can pose challenges for teams when planning care packages etc and I think we have to be mindful of that that we need to be you know careful around the sort of funding for people who are perhaps younger and they are already perhaps facing difficult financial challenges as I talked about that there's living along with the dying families still have to work children still have to be picked up from school granny still has to be taken care of while someone else might be dying so there's the whole social complexity that we need to be able to support families and not just the person who is actually dying with and the carers around that as well. Bob yeah again sorry it was kind of process driven but what was but unfortunately sometimes that that's the avenue we're we're kind of forced into when we look at structures um I was trying to tease out whether or not there was a way of prioritising via the pallidive care register whether that happened or not in terms of of money but we know it's about care and then degrees of care and the resources you have for that and and and we hope but also it's probably worth noting that and I'll just note it convener that um I've got a number of constituents who work for cordia who have came with very direct experience of a pretty tough time they're having right now I wouldn't elaborate on that because that'd been appropriate to this committee but I think they think it was odd if I didn't mention that at this committee. I want to come back to prioritisation of care needs again and I would rather me is always very passionate about um about his stuff but you know if you've got a number of people in a care home and you have your staffing ratio if you have 10 older people in a unit and three of them find themselves on that pallidive care registered that could trigger a higher staffing component I'm not saying it should but I'm just trying to think out how we direct the prioritisation of resources because it's very I know it should all be individualised but I'm trying to think how we put systems in place to direct resources in the most appropriate way. Likewise if you have a care worker for cordia who has a dozen clients and none of them have pallidive care needs and another one who have three or four with pallidive care needs should their case load be smaller and have more time for visits so it's about how we use the information we have to better prioritise the resources that exist and I get that whole thing about yes more resources would be nice and better systems would be nice but it's that system of prioritisation that I'm trying to get to. Professor, that's precisely where the case complexity type of modelling is useful. Certainly within case loads or within service provision I think would be fair to say and certainly in I think good clinical practice and we have four community teams that cover a population of about one and a half million or something like that and we pay attention to the case loading across the nurses who are working precisely to do that and to equilibrate out and also to distribute the burden of practice and with that if you have a funding structure which is then reflecting the complexity of practice then you will see that consequent on that you will get a better and a justifiable argument for how you are or are not using or claiming resource so there are process measures available there are some that are validated and are being developed and I can give you information on that if it will help but they are I have to say to do with specialist practices distinct from other things but they would give you some markers. I'm trying to think of several kind of the clinical example that I work with and I mean we supply medical care to a social care run centre in the community where they have several people with young people with very severe needs learning disability and so on and they're not they're not pallets of these people but they've got huge needs and I would hate to think that their needs were not met because we're looking after dying people in the care home that we supply care to we've got about 25 people now in one care home and I think probably the couple of people who need most time are actually not the dying ones I mean they're people with really severe like really advanced dementia who whose whose behaviors are now in the the term we have to use is challenging behaviors and they're really challenging behaviors and if you've got low staff levels that's very difficult but they're not actually would I be surprised if they were to die this year well I wouldn't be that surprised we were surprised they didn't know it wouldn't be that surprised I would struggle to put in my register but they still need a high level of care so it would be some model you'd need which didn't just look at is the person now on the on their final dying trajectory whatever that means or whatever timescales and I don't think that's due with pallet of care registers we could probably discuss I mean the four of us even who are interested in this we could discuss pallet of care registers and who should go on it for three or four days and not come to conclusion easily so you know if it's from diagnosis does that mean every every person's diagnosed with dementia they go in your pallet of care register because that's a life limiting illness that's 14 years statistically you've got maybe maybe not pancreatic cancer now that's a bad one now my experience of that is that's one of the worst conditions to get it is a death sentence usually within a year in my clinical practice so yes I would put me in my pallet of care register I wouldn't if I was demented and in between that and these are the gross examples in between that I've got all the different complexity of people who and I'm not being flippant but our patients refuse to do what's expected of them they get better when you think they'll get worse and they get worse than you think they'll get better and then you re-plan you re-plan you re-plan so it's I don't think it I love the idea of the process but it's too complex for that process I think sorry that's where that's where tools like the spect tool is is is helpful in trying to identify those who may be expected to die within the next year but I accept it's very someone mentioned earlier on there's the predictability of some illnesses but a lot of it is unpredictable and a lot has been talked about the uncertainty and it's not just the uncertainty of the illness it's the families who live with that uncertainty and how do we support them to live with that uncertainty and the vast majority of care that happens is is good care and people want to deliver really good good care it's how we support them to be able to do that did you want to come back in there we tried the other year we ran SPECT the Scottish Peninsula indicator guidance tool across our practice population we've only got 4 000 patients we kind of identified 140 odd people now we can't consider 140 people from the point of view of dying we do not have enough time to do that there's there's an awful lot of people who are not dying that we are supplying care to as well so it the numbers SPECT is useful as a starter for 10 but it doesn't really help you to get right down into the the group you need to worry about the group you need to be concerned about the group that you need to visit their ceilings of treatment intervention and do more of the the existential witnessing role because it's coming to an end and people need well it's much better if they're prepared and if their family and loved ones are prepared um do i think i would want to say i'm not sure maybe you've covered this before it's just i i haven't heard the hospital setting mentioned and if you've already dealt with that i will be quiet now but i do feel for my colleagues in the acute setting um it is far far more uncertain than it is where i work because in the hospital setting they can do far far more dramatic stuff to people and so their decision making is very very different from mine when the water shed for me as a gp is do you go into hospital or not if you don't in the hospital it's not a lot going to happen from the point of view of lifesaving dramatic interventions because there's not much we do in the community like that or where i work in inner city Glasgow may be different in a more rural area where gps are more involved like that but in the acute setting the ability to to maintain somebody to help someone improve to to not quite resurrect them but get them back out into a reasonable quality of life for another few months is very very difficult and i think that's maybe something that's why people seem to go along this and be passed from pillar to post because they're still trying hard to get the person the copd who's in with her eighth exacerbation in two years to make a recovery and get home again for another three or four months but suddenly they're not for non-invasive ventilation and suddenly they are now dying and that decision is made and it's a sudden sea change for people that's a hard place to work and i'd just to be mindful of of that environment is anyone else you've got a comment on the acute setting there you referred to some of it earlier professor didn't you in terms of a piece of treatments and people's choice at that you know it's incredibly difficult i could regale you with with hundreds of stories because i work in the acute sector as well i work in tertiary hospital from time to time and and the whole problem of managing between acute sector and community is important rapid discharge planning if somebody has got what you might call an acute attack of death or acute on chronic dying and they want to be home can you mobilise them and get them out of hospital in six to 12 hours facing the possibility of those things i mean we've got as many definitions of dying as as you most have of snow i mean really is you know without being flippant that is true because there are so many variables and and one of the immensely difficult tasks in the acute sector is that the acute sector is built to deal with diagnostic specific problems so they are i mean i've been quoted in the newspapers of saying they're like conveyor belts and processing plants and that's not necessarily a bad thing because hospitals do that most effectively but there are some people who do need to die in hospital and the copd person the person with heart failure very bad symptomatology they are people often who do need to die in a hospital setting because of the levels of uncertainty that lead up to a death and you don't know they're going to die until 24 hours or 48 hours before they die and furthermore you only realise that after they've died so it's that difficult in terms of prognostication one in ten patients that we would say are in the last week of life turnout not to be even amongst the experts so this is where the issues around the lcp and so on were so difficult for us to manage in the acute setting so that's a very very different environment and and and we have to recognise those difficulties and we need in my opinion to have mechanisms and possibilities where individuals can be cared for in those settings and there are good examples of hospitals that have palliative care units that are either acute intervention rapid turnaround units for difficult symptoms or have units where people can be looked after as they die over a few hours or a couple of days so there needs to be more flexibility in that because necessarily people do die in hospital often because they need to and we have to see that group of people and not turn them into potentially deprived recipients of care because we're preoccupied with hospital with community and so on and so forth so I'm glad you brought that up to you and thank you. Sander, Maggie, do you wish it, yeah? I think that's where the different levels of education and training come in as well in that people working in acute settings may or may not be working with death and dying most of the time or just some of the time but there is something about the different levels of education and training and getting some of that at least the very basic level of education to everybody in an acute setting if they're actually likely to be involved with people who are at the end of life or requiring palliative care. Last September, October, September 2014 and it was about end-of-life care and they asked their members key questions around how they provided end-of-life care. Almost 8,000 nurses responded within a few days, it's the biggest response they've ever had and what that tells us is that people are really passionate, the nurses are really passionate about what they do and they're concerned about the knowledge that they maybe don't have. Over I think almost 3,000 of those almost 8,000 were hospital staff and over a third had never, they dealt with dying on a daily basis but they had never any formal education and that troubled them so I think it is important that we really have programmes that are out there and that staff are released to be able to attend those programmes or encourage reflective practice. I think there's other ways that we can educate and teach people and learning on the ward or in the environment that we work in and reflective practice is one of those models that we can begin to enhance the knowledge that's there. Time's gone on now, I've got one final question and I've got agreement from the committee that that's the case or does anyone want to end? Dennis Robertson, thank you Dennis. I'll try and be brief. Professor Clark believes that one of the ways of trying to ensure that we provide good quality care for the future is to look back and that is at the national bereavement survey and use that as a tool for measuring the outcomes and in fact I found it a strange terminology in terms of a satisfaction survey but it's looking at care, the provision of care, what was there, what could have been there but it's only it's it's it's there for the carers and relatives and what we've heard at the moment is perhaps we should be looking at the professionals and what they believe as well. Do you think that a national bereavement survey is the way to collect the information such as what we have in England, the voices survey? Mr View on that. The national bereavement survey is one way of looking at people's needs and what individuals want. Professionals will also have a perspective on what people need which may or may not be what the individual want but I think the bit that professionals also bring to it are some of the things that families and relatives may not recognise so professionals may be able to pick up on different aspects so there may be two sides to that yes the bereavement survey is a good way of looking at how people would have liked things to be but also there's the professional side of it and what professionals feel could have been done better too. This is a particular soap box actually so forgive me. I mean first of all I think it's very very valuable data but let's not forget it is a group of people who themselves have had the burden of witness and to what extent they are dealing with their own loss and suffering is is worth taking note but that's not what I wanted to say really the there are two groups of people that we care for as specialists those are people who are dying in their families but they're also our colleagues so I spend as much time supporting my colleagues in their decision making helping them through with with difficult problems and undebriefing them and so on and so forth and I think that we probably need to develop measurement tools and they are experience measures to find out whether we're actually delivering adequately for our colleagues so that I think that's a task for specialists to do and in that regard just going back to the hospital question I think that everybody should have access as professionals to advice from specialists around the clock that can be in any form of way um but particularly in hospital settings where often death does arrive in a very unexpected and often a very unpleasant way and it's the legacy of bad death from these kinds of things that lead to such difficulties in society. I was the expert witness on the lcp inquiry with Lady Neuberger and the experiences that families related were dreadful and actually a lot of it if there had been support for staff and the opportunity to help staff by peers or by experts doesn't matter I think that the experiences would have been a lot better for all concerned and the morbidity amongst clinicians who have been involved in bad deaths is is an iceberg of problems that we just do not know about and is something that I think as a society we are going to need to face at some point. I think one of the things that general practice has been doing for a long time now is significant event analysis so where something happens that is significant and you look at it and that can be death and it can be other things as well that's part of the GP contract as well to encourage that and I think it's a very good way to learn so looking at the death that went well and looking at death that went badly I think it's hugely instructive. We also do the same sort of thing with care homes and you can do post death analysis and you can do that at a fairly simple level or a deeper level and again encouraging people to review what happened it is very much kind of centered in the healthcare professionals I accept that in conjunction with things like the voices program and other bits of work I think that could work very well. The caveat of course is that that takes a lot of time if I look at one of the deaths of my patients and then we discuss that as a practice I reckon that and the unit of currency I use is appointments because that's our unit of currency now that's about 80 odd appointments we lose if we do that and we're trying to offer the metric that she's now is the number of appointments you offer per thousand patients per week in general practice land and we're trying to offer now about 90 to 100 appointments a week to try and meet demand so 90 to 100 appointments per thousand patients week so we're looking at offering 400 appointments so 80 odd appointments is a fifth of our weekly total for one review if the five of us were all part time if we all do that then that's a whole week gone just on death not on misdiagnoses of cancer say or the the NEI with the child which is terribly important or the postnatal depression which could be catastrophic if we missed that so the worry is that we we are struggling to meet demand as it is and we've got these tools that we need more of us to do this properly and it's not that they're bad tools it's just that the the system that we're working just now is creaking anyone else? Professor George used to put this on there before we were finishing up now but you mentioned a couple of times the important role that you have in supporting professional colleagues in dealing with bad deaths and others on the treatments and just relating to some of the stuff was a little more earlier in terms of home carers if you put it in the hierarchy you maybe see a doctor once a week once a fortnight a nurse twice a week home carers are in to these homes on a daily basis building up attachments whatever the perception I'm putting it to you I don't know if maybe Sandra or Maggie can tell me if any of this goes on but when that death occurs eventually occurs then they will often be the funeral and they'll be around the family is there any is there any known support that's given to these predominantly women who provide that level of care? Does anybody know of any support mechanisms that they may have maybe I should ask that question earlier but you know in my experience I don't know of any support mechanisms that help those that level of carers through you know a death of a young person or alongside somebody with MND or cancers or you know people who are at home there doesn't seem to be much consideration about how we support them? I think probably from a health perspective and Sandra you might want to from a health perspective it's probably more of an informal arrangement than any sort of formal structure that's in place for social care I wouldn't be so sure because social care have a really good system of supervision for their social care workers now whether that extends down to home carers I wouldn't really know but it would be worth actually looking at that but from a health perspective it does tend to be very ad hoc and more peer-support. The school health perspective you know as Professor George referred to is more of an informal process rather than there will be pockets and you know there will be places that have put in some sort of system and there will be there will be good practice out there but for the most part I would think it's pretty much relies on peer support and individual teams. I would agree with that I don't think there are any formal systems but there will be variable practice across the country I would imagine. What I would say is that in the hospital setting more and more I believe that spiritual care teams can pick up the support for staff which is something that perhaps we wouldn't have seen maybe five ten years ago but certainly the spiritual care teams across the hospitals and the bereavement structure that's being set up in Scotland is about how we support staff as well as patients. I mean there are some models of care and hospices do this but again it touches a small percentage of the population and I think most of us as clinicians who work in the community we would have as part of our caseload we would have identified high-risk people or we would take notice of the even the paid carers who are coming in and we will know who they are and then then there will be informal mechanisms that feedback into the care agency or actually providing debriefings. I'm just aware for example of the disability groups for example the homes that have individuals with disabilities who are living much longer than they used to and are now dying in middle early to middle age they often are encountering dying for the first time within a family within a family setting effectively 10 20 residents so palliative care certainly from our services would be providing specific support around the bereavement of that whole social unit effectively which includes the carers and the other residents who will have known that individual maybe for 10 or 15 years and then have the burdens of their intellectual frailty and so on to deal with at the same time so but they're always informal. Thanks. Not to count the importance of all these things but one of the things that just as a GP who's worked in the same area for almost 30 years I'm constantly humbled by the phenomenal resilience of the people that I work with my patients what they've put up with through their lives both in ill health and through some of the inequities in our society is staggering and their ability to cope is magnificent and a lot of the carers that I will encounter with the social carers particularly of the patients of mine they are from that area and they've been through it all they've been there done it bought the t-shirt and they are incredibly resilient and I think again it's out to to recognise that and to to point it up to them that because the danger is that we start to make them think that they're not coping whereas actually this is something else that they are well able to cope with and maybe acknowledging the fact that they've been suffering is what they need. My last MND man who died I mean we had a couple of mutual teary encounters the carers and we outside his house because it was horrible and I think we all got a lot out of that and then we had a kind of bereavement meeting at his funeral and that was good and I think and my wee letter of congratulation to them and their staff and manager I think helped but it is kind of informal and family-like and it's I think and not but not to decryder these people's ability. Thanks for that. That concludes this evidence session thank you very very much indeed for your attendance here the evidence you have given and of course all the written evidence that we've received thank you very much indeed thank you. Yeah we've previously agreed on any private session.