Good morning and welcome to the 25th meeting in 2015 of the Health and Sport Committee. I would ask everybody, as we usually do at this point, to switch off mobile phones as they can often interfere with the sound system. You also know, though, that we are using tablet devices instead of hard copies of our papers. We have an apology this morning for Rhoda Grant, who can't be with us. There is no substitute in place. The first item on agenda today is subordinate legislation with two negative instruments before us. The first instrument is public bodies joint working integration joint board establishment Scotland amendment 2, order 2015, SSI 2015 backslash 266. There has been no motion to annul and the delegated powers and law reform committee has not made any recommendations on the instrument. Is there any comment from members? There is no comment from members to take it from that that the committee has agreed to make no recommendations. Thank you for that. The second instrument is the public bodies joint working integrating integration joint board establishment Scotland amendment number 3, order 2015, SSI 2015 321. There has been no motion to annul and the delegated powers and law reform committee has not made any comments on the instrument. Is there any comment from members? No comment. Can I take it from that that the committee has agreed to make no recommendations. Thank you. The third instrument is self directed support direct payment Scotland amendment regulations 2015. SSI 2015 319. There has been no motion to annul and the delegated powers and law reform committee has made no recommendations on the instrument. Is there any comment from members? No. I take it from that that the committee has agreed to make no recommendations. Thank you. We now move to agenda item number 2, which is our fourth evidence session on the health, tobacco, nicotine etc. and Care Scotland bill. We welcome with us this morning Christine Lang, patient, advice and support service national coordinator, Citizens Advice Bureau. Dr Robert Henry, MPS, medical director, medical protection society. We have with us Professor Alison Britton, convener of the health and medical law committee, the Law Society of Scotland. We also are expecting Peter Walsh, chief executive action against medical accidents, who is with us this morning, who has had some difficulties in his travel. He is due to be with us and we expect him to join us. We don't expect any opening statements at this stage and in the interest of time we will move directly to questions, if that is okay, and I call Mike Mackenzie. My question really is at rest to Professor Britton, because whilst I support the sentiment behind the duty of candor, I am grateful to Professor Britton for providing in Britton evidence an indication of some of the potential problems. I wonder if she could elaborate a bit on those or just reiterate some of those. The committee will remember that in a previous session I mentioned the analogous situation of road accidents where if anybody's any driver is unwittingly or caught up in a road accident, if you read the small print of your insurance it will tell you strictly that you do not admit liability. It strikes me that there is some degree of analogy there, but could you just perhaps touch on some of the potential pitfalls of this legislation? I will try, Miss Mackenzie. I suppose it would be logical then to start with the first question and that would be asking about the necessity of the legislation. What would legislation of this nature bring to the situation that isn't already there? And what is already there is probably two things. A long standing professional ethical duty to have a good dialogue with one's patients, so those that you're caring for, and to build a relationship of trust. And I think without good communication, good dialogue and a relationship of trust, the practice of medicine and healthcare and social care just doesn't operate at all. So maybe the first question is what does this legislation bring that maybe isn't already there? I suppose that would be my first question there. The second observation which I hope is helpful is that if this legislation comes into effect under its current proposals, I think it brings with it a dilemma. It's aimed at organisations, but I think it's almost impossible for those organisations to discharge the obligations in this Bill or even try and implement the processes in this Bill without involving individuals. The provision of healthcare is not undertaken by an organisation, it's undertaken by individuals. And I think that raises maybe a modern dilemma for any organisation that on the one hand you are trying to encourage the individuals that you employ to be compassionate, to engage with the individuals that they're caring for and to be emotional as into their circumstances. So that's one duty I would hope any good organisation has. But the other organisation which is perhaps more of a modern invention is to discharge compliance as well. Process, procedure, parameters under which perhaps the first range of duties have to operate. And I think that can be very challenging to operate these in tandem. Do you think that effective? Well, thank you Mr Chairman. I think that I would entirely support what Professor Bryson has been saying. I think that it's terribly important that the outset, I think that we make clear that as an organisation that supports doctors, NPS absolutely supports a culture of openness and transparency and honesty when things go wrong. And I think that our concerns very much echo the comments that Professor Bryson just made about the, will the legislation actually add to that culture of openness that we're trying to support, which we do through educational processes? Or will it simply add a sort of bureaucratic burden and become a box ticking exercise to actually have the opposite effect of that which we would want in producing a culture of openness? I mean, I take both those points and the suggestion that the legislation as it stands may have a contrary effect, but having listened and read carefully the other evidence, it would suggest that this culture of openness and transparency, whilst it might be quite common, is not as common as it ought to be. And therefore could you suggest a way that we could, perhaps having improved a way of addressing the obvious problem without giving rise to the legal concerns and the pitfalls that you've helpfully pointed out? I think that that's one for me as well. Very much, when we survey our members, there is still quite a culture of fear within the staff within the health service at all grades, I think, that, despite the fact that we've talked about trying to have a no-blame culture within NHS Scotland, that that has not yet been achieved. I think that the way to get that is through some educational works. I think that, again, as people like the patient safety organisations have said, it's about changing cultures within the organisation where staff feel comforted and comfortable coming forward, where something has gone wrong, and being absolutely open and honest about it and to look for ways of learning from it, changing it. Rather than imposing more duties, and I think that it becomes even more of an issue when we get on to talk about welfare and neglect proposals, having statutory duties, people may not fully understand, and again, as Professor Britton points out, it actually falls back on the individuals, although the legislation as drafted is designed for bodies. It's the individuals who have to actually ensure that they comply with it, and I think that if there's a misunderstanding, particularly with some of the more junior staff perhaps, or people who are less experienced, that are anxious that they may be breaching some of their statutory obligations, that actually adds to that culture of fear and anxiety that they might be disciplined, that they might be subject to regulatory sanctions or whatever. Really, I think that what we're saying is that adding legal obligations to people that they may not always fully understand isn't ideal. What we do say, and I think that parts of the bill go some way to addressing it, is around the idea of support in education for staff that may be involved in this. I think that if we do go, if it is the Government's will to put legislation in place around a statutory obligation of Canada, that I think that the really important stuff will be around some of the definitions, because I think that we can get into some of that in more detail. Some of the definitions are a bit loose at the moment, so people may not understand it. I think that also the training and support mechanisms that are put in place or the NHS organisations that are obliged to be put in place will be extremely important. Thank you, convener. Just a quick follow-up. Let's see if there's any other witnesses that want to respond. You need to give them some time to respond. That's exactly my point, convener. I think just an additional point. You asked about possible solutions. I think just to follow through about the idea of education, I agree. We need to give people an opportunity to understand the implications of the legislation because it's not going to be effective if they don't understand the implications. Our understanding of this legislation and the impact there would be that it's changing thresholds of what harm, definitions of harm and possible outcomes of harm. You're either changing the thresholds in some circumstances or lowering them. I think it would be very important that everybody involved in this legislation would have to understand that. At the other end of the spectrum in relation to willful neglect, you may be criminalising behaviours which have or might have occurred in the near-miss scenario. So if this legislation goes through, I think being able to impart that information about changing the thresholds, the extent of those thresholds and the possibilities of now criminalising some behaviour or near-misses, I think getting that information imparted to the relevant organisations and individuals would be an important part. Would you say that it's my concern that it may take 10 or 20 years for the courts to deliberate over some of this stuff before we would really have clarity in terms of what exactly it means? I think that perhaps we're going to be looking at definitions and I suppose this would not be the only piece of legislation that the better the definition, the less you're leaving for either the satellite legislation or regulation to come through or I agree, deliberation by the courts to interpret what is meant by a triggering event, to interpret what is meant by unintended or unexpected consequences. Thank you. Thank you, convener. I explain. Is that a supplementary tennis? A short supplementary then from tennis? Yeah, it's very short and I hope so. It's directed to Dr Henry. It was when you were raising the issue about education support. I wonder if the codes of practice that we have at the moment in some areas there's no definition or regulation in terms of supervision how often it should happen. Do you think that we should have a mandatory code within codes of practice for nursing and doctors and everyone else, because it is in social care, for mandatory supervision rather than going to a statute? I think that that is a good idea, because I think that clarifying what the expectations are and we've seen some examples quite recently with some concerns in some health board areas of the levels of supervision that have been given to juniors, I think that where openness and clarity with patients where things have not worked out as we would have wished, where work-based is in well-functioning units, where they're well managed and there's a good culture, where that may become more of a problem, I think, and where some of this concern, particularly amongst juniors' staff, of a fear of getting into trouble, is often where there's poorer levels of supervision, where there's poorer learning culture, if you like, in existence, and I know in social work that they have been further ahead sometimes in addressing some of those issues, so I think that the point that you make is absolutely right. I don't know where I picked up yesterday, just for the clarification. Is that not already the situation in the Northern Ireland where those responsibilities are mandatory? We can maybe check. I think that we picked it up in a discussion yesterday that we were speaking with practitioners, but we can get that checked. Bob. Thanks, convener. Good morning, everyone. Can I just start by putting a brief wee statement on the record in relation to a session that committee members had in private with the Scottish Infected Blood Forum, Hemophilia Scotland, and the Hep C Trust in relation to what their thoughts were on duty of candor within this bill. I know that the members there who attended it, including myself, found it incredibly helpful and quite powerful some of the evidence. We hope to have a short note, which will be available in relation, not a minute of that meeting, but a short note in terms of some of the themes that come up from that meeting. That will certainly help us in more deliberations. I just wanted to find a call involved for sharing their stories last week in relation to that. I just wanted to put that on the record before I move to questions. I want to return a little bit to where Mike Mackenzie started about whether the duty of candor is needed or not, because we seem to gloss over that fairly quickly and question that without scrutinising it. I thought in any great detail. I'm referring to things that do exist at the moment. Health and social care professionals have ethical requirements to discharge and disclose where their instances of harm have taken place. Health and health care professionals issued a joint statement last year in relation to duty of candor and understand that doctors and nurses, perhaps others, have candor requirements within their professional standards. I leave that sitting slightly to one side and maybe Dr Henry, or maybe Dennis Roberts and the Supplementary, talked about social care staff and a bit further ahead in relation to some of this than others. It left me thinking there's maybe a well-intentioned, if you like, spaghetti approach to what is a duty of candor and when it should be applied, when it shouldn't be applied, what is an ethical duty, what is a statutory duty when it should kick in and when it shouldn't kick in. So, whilst we have all these examples of when a duty of candor would either be required or at the very least best practice and ethical, I'm slightly confused as to whether it's consistently applied across the health sector, across the social care sector, or even together as we move towards, for example, health and social care integration for older people at least and for other services as well. I'm just wondering some reflections on whether, although all these duties or best practice exist, is there consistent application of what duty of candor is, when it should be triggered and what it actually means and is there an opportunity to bring some certainty to that for health and social care professionals? It's certainly from our clients' experience making complaints to different health boards throughout Scotland. There's inconsistencies, certainly in the way that the health boards respond to these complaints. Some of health boards are excellent at giving clients full explanation of what's gone wrong and what's happened. And they explain the changes they will make to make sure that this doesn't happen again and the training they will give to staff if that's appropriate. Other health boards are much less good at doing that and explaining the other. Don't fully explain to the client what's happened or whether they're unable to give an apology. Again, perhaps because they're the fear of litigation, there are great inconsistencies, certainly from our clients' experience. Anyone else? A reflection more than anything else. I would imagine that most people working in the caring professions understand what duty of candor means, that idea of dialogue, openness, trust, accountability, just where we started our discussions there. Consistency, however, I think must be a very difficult thing to do, and perhaps that's why initially it would have been professional organisations that put forward practices, guidelines in order to be able to exercise that within the profession. But modern medicine and modern healthcare, you're looking much more now at a multidisciplinary approach. So in treating an individual, nurses, community nurses, social workers, community workers, and because duty of candor might be quite amorphous, it might mean different things to all of them, and whether or not they had actually met that or not. So trying to find a consistent approach that one size fits all is certainly going to be a challenge there. Okay. Dr Henry, do you want to add? Thank you, just my comment. I would agree with Christine, I think there is undoubtedly variation from board to board, but we see that in a whole lot of other areas around health service management in Scotland. And I think, again, comes back to what we're saying about the culture within that health board area or that organisation, the quality of management that allows things to be done, and I suppose ultimately the scrutiny that the boards make of how patient complaints, patient concerns are dealt with. And, again, I'm not sure that the legislation would actually get more consistency, because, again, I suppose that comes back to how any new statutory obligations would be monitored, and I think their suggestion is that it's HIS, Health Improvement Scotland, we're doing it. Again, would this assist them in improving and getting a consistently improved performance across health board areas, or not? You would have to ask them. Again, I think, as I said, a lot of it comes back to the quality of management and quality of setting the culture, which comes from the top. Mark, is it useful at this point just to reflect the discussion that we had yesterday in the clinical of the concern about the clinical practice, the day-to-day, not on the adversarial, but, you know, the consultant yesterday and her concern, Malcolm, is it? Well, I mean, they could be raised. I mean, I was actually wanting to take up a question to accent against medical accidents to explain we're having quite a lot of criticisms at the moment of the duty of Canada, where obviously your paper is a core document in terms of the background to this, and why. So I was wanting to ask you about that, but perhaps you want me to do that in a little moment or two. But no, I think what the convener was referring to there, and I'm reporting her views rather than necessarily agreeing with them, but it was put to us, and Peter Walsh will want to respond to this when I question him later. Well, I suppose one of the most interesting things that she was saying was that some people don't want to be informed. But I suppose that was the key thing I remember. Your memory of this may be more detailed than mine, convener, but it was certainly a strong view from a clinician that this was not going to, that there were a large number of patients who wouldn't want to be informed in these circumstances. Although I wondered myself when I was listening whether there is a different situation when it's end of life care than other situations, but that would be my reflection on what she said. But I think Bob's going to hit a final question. I'm still... I thank them for their answers, and maybe it's my fault that I'm confused here, and I apologise for my confusion, but the replies I got, with the exception of Ms Lyme, I thought was quite clear. The other replies spoke about we needing greater consistency and would legislation actually add to cultural change? If you liked my question, it was about clarity rather than consistency and cultural change. For example, in the face of the bill, it's fairly straightforward, and the opportunity is in what the guidelines and the guidance will show and training that may flow from that. But I don't have any clarity under all these different requirements that exist just now about if. I'm sorry to give some very small examples where the duty of cancer may never kick in, but I use them for simplicity purposes. So an elderly person in a care home setting who has been assisted in meeting two people for moving and handling, or in a hospital ward assisted in meeting two people for moving and handling, and there's a continence issue or whatever, and one person, because they don't want to wait for that second person, decides, I'll have a go at that myself, and there's a fall, and there's a significant incident. That's certainly... The family might want to see some transparency and openness in relation to that. Whether it triggers a duty of candor requirement or not, I don't know. But the point that I'm making is there's a living breathing example that probably happens in our communities. Similarly, drug errors do happen in hospitals and in nursing homes, not through any available neglect, just because human error is just part of being human, and it's whether or not there's any guidance or clarity at the moment about where that human error occurs, about what the requirements are in relation to the nursing staff or whoever who administered that particular drug. I'm giving two examples where maybe it's such a... Within reason it's at a relatively low level where the high-end duty of candor might never kick in, but I'm left with no clarity at all irrespective of what the professional codes may say for doctors, may say for nurses, may say for care staff, may say for allied health professionals, as to when the ethical and requirement within the professional codes actually kicks into real-life examples for when a duty of candor or openness and transparency should be employed as an opportunity, and there may be significant issues on how you define, how you trigger. I get all that, but just in terms of the opportunities within this legislation to define better and to provide better clarity, because I don't see how we can ever get the cultural change properly we need or the consistency that we need unless we decide what the baseline is to derive consistency from. Sorry, I'm on a bit there, convener, but I think it's important. That's okay, that's fine. We're delighted now to have Peter walks with us who had some transport problems.  I think I'll be okay to press that one. If I could just respond to those last two points. In terms of clarity, first of all, on the professional ethical duties for doctors and nurses, it is pretty clear that there's a duty ethically and professionally to tell patients or their next-of-kin about any unintended, unexpected incident that's caused any level of harm. So it's a more all-embracing duty than the statutory duty that we're talking about today. And it's basically what any of us would expect. Any decent health professional, if they know something's happened that may have caused harm, leave loaners known to have caused harm, you'd want to tell someone about it. I think what's really exciting and different about the statutory duty of Canada is that it's applying to organisations collectively and corporately, and it's dealing with a situation, as you said, that things do go wrong. And there will always be some incidents that happen that should have been avoided, that are unexpected, unintended. But what also goes on and has done for the whole history of the NHS and beyond is that there's, on occasions, been a lack of honesty.  And anyone who works in the health service or in social care will tell you, it does happen. What's been the situation in the past that people have been talking about culture? The culture has been one where, in effect, the system has frowned upon such behaviour of a lack of honesty, a lack of openness, but it's tolerated it.  It's a missing segment at the moment, but one that says, unequivocally, a lack of openness and honesty when harm has been caused or is suspected of being caused, is not tolerable. And there are definitions. I would like to summarise the definitions as any significant harm, and not only harm that's known already to have occurred, but has the potential to develop or is suspected. On the point about some people not wanting to know, I think that is a very valid point, and one has to respect each individual's wishes. When the discussions took place in England about their version of the duty of Canada, we made this very same point. And the way that they've dealt with it in England is that there is a requirement to actually tell the patient or service user or their family that there is something to report, to discuss. But they can simply say, well, thanks very much, but I do not want to know. Let's say mum, dad has passed away, we're moving on and we don't want to know another thing. And that's their absolute right, but it's not the right of any individual health professional or organisation to make that decision for them that they don't need the opportunity to know. Any other responses, Bob? OK. Malcolm? That was very helpful for that. I suppose I was interested in the submission from Axon against medical accidents because it gave some background to this. I think we're aware that this has been legislated for in England and we see behind that the mid-staff's inquiry, but you say in your submission, Mr Warch, that you've been campaigning for this for 20 years. I don't think that this has just come from nowhere. I mean, there's nothing wrong with Scotland copying things from England if we think they're good policies, but obviously the Scottish version of it is different as well in some ways. I suppose the other interesting thing about your submission is in the kind of way you're suggesting some amendments to the proposal in Scotland. For example, I suppose you're concerned about enforcement because there's a Care Quality Commission in England that has some powers to ensure that it's enforced, whereas perhaps it's not so clear what's going to happen in Scotland. I would be interested in a little bit about the background to it, and I suppose a couple of things where you would like to see the detail of the proposal changed. I'm sure others will want to give a different perspective on this, but I think it's good to hear from Mr Warch, because the discussion before you came was very much dominated by a critique of what's proposed, so it would be useful to get obviously a balance to that from yourself. Yes, certainly. In terms of background, it's perhaps an opportunity and time to pay tribute to the family of Robbie Powell. You might be aware that some people, in fact our original campaign for a duty of Canada, we gave the title of Robbie's Law. This is because of the death of a 10-year-old in Wales, South Wales, and the absolutely heroic efforts of the family to get openness and transparency. There was an alleged cover-up in Robbie's case. There was negligent treatment, but the reason it's significant for today's discussion is the alleged cover-up, and the fact it established that there was no statutory or legal obligation to be open and honest when things go wrong, as I said earlier, the system frowns on cover-ups. Nobody would approve of that kind of behaviour, of course. However, it's been tolerated for decades. For decades also, people have resisted the notion of a statutory duty. People have argued that somehow it would have the opposite of the desired effect that somehow it would get in the way of an open and fair culture. There was a lot of resistance in England before eventually the Government and Westminster accepted the pressing need after the mid-staffiture inquiry which looked at the arguments for and against in some copious detail. Since it's been adopted as policy in England, I have to say that those people who were the opponents of any notion of making this statutory actually enforceable have moved on. It's been very well-received on the whole and people are getting on with putting things into practice. After all, if everyone preaches openness and honesty and doing the right thing, what possible problem could there be in that being put in statute? No one's argued, incidentally, or certainly we haven't argued, that actually passing a piece of legislation, a regulation will in itself change culture in the same way that having legislation about discrimination on grounds of race or creed or disability, having that piece of legislation on its own will not change the culture, but it underpins a change in culture that society demands. So what you will be doing by passing this legislation is sending the clearest message that bad behaviour in terms of a lack of openness will no longer be tolerated and there will be measures in place to actually make sure that the right things happen. Of course there's going to be a need for training, support for staff in doing the right thing. I'd like to say that far from necessarily having to copy England, there's a great opportunity here for Scotland to get this right in a way that England hasn't yet entirely done. There are some mistakes if you like or some omissions in the original English approach which you have the opportunity of ironing out. Most fundamental in all of those is making sure that by the time the legislation comes in there's a coordinated, planned and resource program of awareness raising, training and support for the staff who are responsible for implementing it, which sadly is still not happening south of the border, but we're certainly hoping it will do very, very soon. In terms of enforcement, it is an important point. I think the public in Scotland will be saying, well, this is all very great, but it's motherhood and apple pie. Of course we expect openness and honesty. What actually happens if health boards don't comply with this or if a GP practice don't comply with this? I've had a very helpful meeting, I have to say, with Scottish Government officials where they've explained the differences in the system of regulation and monitoring etc in Scotland compared with England and the rest of the UK where we work. What might seem sort of just throw away line in the legislation about Scottish ministers having the ability to report? Which on the face of it, to the lay person, you read that and say, really, is that the consequence of failing to comply that you're named and shamed in the report? Of course that wouldn't be adequate. But I think if it's made clear to the public and indeed service providers that actually this really is a serious matter that boards have to sit up and take notice, otherwise the consequences that will follow through ministers will be serious, then you've got the right situation. Of course we hope those measures never have to be used because the aim of this is to change culture and practice for the good and this is underpinning that. But it is an important ingredient, I think, to have the adverse consequences should people decide not to comply to really make this meaningful. I'm still thinking about the deputy convener's question about what will it add in terms of consistency and we've now obviously alluded to the position in England as well. I think our view would be is we simply don't know the position in regulation 20 of its deals with the duty of Canada in English has been so recently introduced, we just don't know. And I would have to say that it's not my understanding that it has been universally embraced and accepted by all. My reading and evidence would show that there are still reservations, concerns, but clearly given the legislation has passed on would want to do the best. Coming back in a year's time in asking that question I think we'd have a much clearer idea of the position in England and as you correctly pointed out, NHS in Scotland is a slightly different beast to what we're dealing with in England. But I don't think we should also confine ourselves to the position in England. I think we should be looking internationally what can we learn from our colleagues elsewhere and it's my belief that that has not yet been done because these concerns, these issues of duty of Canada, how we interact with people that we are caring for, these must be universal considerations. So we're at this point, we have this legislation. We're not clear of the outcomes and the consequences of the passing of the English legislation. Perhaps we should still be looking for evidence elsewhere to get a clearer idea of whether, as Mr Doris says, it is possible to draft something that does pick up the nuances of the diverse nature of our healthcare professions. I think it is for that very reason that health and social care have evolved in terms of policy guideline regulation bespoke to their own practices because duty of Canada, whilst recognised, is such an amorphous concept. Dr Henry. Again, it was interesting what Peter said because there's some overlap, I think, because we're probably trying to achieve. Peter, I've talked about this before. But there are some concerns. Certainly our experience in England, I think that Peter touched on it, is that so far there's little evidence of the educational and support being put in place. We've certainly, particularly among general practitioners, in England, had feedback that they don't really understand what their duties are. They are anxious about CQC, because, again, very different in England from the Care Quality Commission. There is a fear that they cannot discharge their duties properly. If this is going ahead, I again underscore the importance of proper support and education around it. I suppose, ultimately, what slightly concerns me, is the idea of there will be tough enforcement, something bad will happen to people if they fall foul of the legislation. That, I think, A, it's going to be difficult to enforce, but if the perception amongst the healthcare and the social care communities that this is yet another burden that's being added, that something bad may happen to them, rather than it encouraging people to do exactly what we hope they would, because a scandal is a scandal. Would this legislation really have stopped mid-staffs or more convey some of the other problems? Or would that just be yet another aspect to the scandal that not only had they breached common decency, let alone any professional obligations, but they would have breached the statutory duty as well? I'm just anxious that it may be a proposed solution to something that wouldn't have the effect. Welcome. That was all extremely helpful. Can I bring in Christine Lline? It's possible, because you have some extra suggestions about your support of the duty of candor, but you feel that it's important that there should be support available, which would be interesting to hear about. You also have a reference to the public service ombudsman, so again, I don't know whether that partly answers the question about what recourse people would have and so on. We would be certainly welcome that people are directed towards independent advocacy and that they help to be available through the patient advice and support service delivered by Citizens Advice Bureau throughout the country. We would certainly welcome the training for NHS staff around the area of complaints and early resolution when people are dealing with that in hospitals and health centres. I think that there's still a long way to go with that. I think that it's important that people are made aware that if this is going to happen, if people are going to be asked if they would like information that they're made aware that they can get support to get them through that process, it may be that somebody is available to be with them when they're given that news, or that if they then want to make a further complaint about it or find out more that they're supported through that process. At the end of the day, I would also refer to the Patient Charter, which was introduced along with the Patient Rights Act, which states that patients have a right to be informed and involved in decisions about their care and treatment, treated with respect and dignity and their right to say about their care. If they're not given information fully about what's happened to them or where things have gone wrong, then I don't know how they would do that. We would certainly welcome that openness and honesty. That's all I've got on the duty of Candra. Are we still... At some point it would be good to get comments on ill treatment and open neglect, but do you want to keep on Candra? I can bring you back in again, or you can continue with that. It's really quite interesting, because most of the concerns were about ill treatment and willful neglect, whereas this week the balance has been very much about the duty of Candra. So I suppose it would be interesting and some of you have covered it in your submissions, but it would be interesting to just open up that other second big issue that we're looking to cover today. I can see Peter Woe certainly strongly supports it with some qualifications, so he may want to comment on those, but it would be just useful to get your general views on that second area of potential controversy. Yes. We think in principle it has to be the right thing to have an offence of willful neglect. We've all heard about some dreadful scandals, and I think there's a public expectation that there is a strong line taken on this kind of unacceptable level of care. Our concern simply lies around it being directed very carefully. There's a danger of overdoing this and actually punishing people who are put in an impossible situation. So our concern, and I understand that the policy intention is, that this will capture the management, if you like, who oversee very, very poor standards and not be targeted at day-to-day staff who may have been put in an impossible situation. Any other comment? How do we do that? How do we separate the individual from the organisation? I've got no particular expertise or wisdom to offer you on that. It's really just a plea for us to see fairness in the way that this is deployed. I think if the other things we've been talking about due to Canada and other elements of patient safety are got right, then nobody wants this legislation or this offence ever to have to be used. That's the end game. But it's just about having safeguards about how it's approached, it's approached in a fair, sensible and proportionate way. I have to say that we've got much more concern about the proposals for willful neglect as a criminal offence than the duty of Canada. We're all trying to get the same place and there is the creation, is this going to work? I think that we've got really quite serious concerns. Firstly, it is as drafted, focused on the individuals. If we're talking about a culture within the health service where people are anxious about a no-blame culture, introducing a strategy duty that might end up with making prison, certainly I would suggest is going to not foster a culture of no-blame. Secondly, the question is, is it necessary? Are we really saying that there are people at the moment getting away with these utterly unacceptable behaviours for want of a criminal sanction? Absolutely unacceptable that people would willfully either mistreat a person or willfully neglect them. But I would suggest that the criminal disciplinary and other sanctions that are in place surely are adequate to cover that. I think that the concern that would actually fly in the face of what we're trying to achieve with the duty of Canada legislation, where we're trying to get people to be open, trying to get people to early on in a situation to be entirely transparent. If sitting with that, you've got the threat of criminal sanctions and imprisonment, surely that, to my mind, would seem to be almost entirely counterproductive. So a piece of legislation that I don't think there's people getting away with it, if you like, the moment that we need to cover that with. Secondly, creating this climate of fear would actually counter to what we're trying to achieve through any legislation around duty of Canada. We have really fairly severe concerns about that suggestion. Anyone else? Christine, Professor Britton? The society didn't make any submissions on the area of willful neglect. We focused, as a health committee, on the duty of Canada because it had, we felt, a broader effect. So perhaps just two things. The society would be happy to take this back and consider it now that there has been further deliberation here. But perhaps a personal observation, and maybe it takes us back to the point that Mr McKenzie made at the beginning, have to be very clear in the terminologies that we're using here. If we're using concept of willful neglect, it has criminal implications, and we should be very clear that we're not confusing that with a negligent act. In the law, as it stands just now, and the procedures that are available to us under Scottish and English law, and neglect or negligence in a healthcare setting is an unintentional act or remission, an unintentional act. As soon as you're using the word willful, you're looking at the criminal concepts of its premeditated intentional or it has been exercised with such a degree of recklessness, it could not be considered in any other way apart from within the criminal sphere. Personal observation there is this legislation would then make a proposal that somebody could be criminally investigated for a crime which may not have even occurred. You're back on this idea of near-miss. But as a society, we'd be happy to take these concepts and develop them further if that would be helpful to the committee. In the definition of a willful act, you generally described it there, but how would that description be very important for people working in that environment? How would define a willful? I don't think I'm qualified to give a definition within a healthcare context, but normally what that would mean is a behaviour so reckless or intentional or premeditated that it could not be considered in any other forum apart from through the criminal law. I had a show from Colin, particularly a willful neglector, just to ask a question to Colin because I'm asking you a question before I let you in because I've got an act. In terms of the almost precarious liability aspect of this in terms of how other... It doesn't matter. I'm quite happy to just go through my list or if there's anyone wanting to ask additional questions on the aspect of willful neglect. Mike. Just wondering if any of the witnesses feel that whether these two aspects of this could result in a kind of risk aversion. We've seen the manifestations of risk aversion. There's a high profile case of a lady. I think she was a lawyer that fell down a mineshaft and that the fire brigade refused to rescue her because of health and safety concerns. We hear about carers who are unwilling to change light bulbs for elderly patients and so on and so forth. Is there a possibility that the risk aversion that this gives rise to will lead to a situation where the cure is worse than the disease? Mr Walker. Thanks, I'm happy to take that. I think you're right how this would be interpreted by the healthcare and social care community. I think it's difficult to predict. But the idea that you could go to your work and try to do the right thing and if circumstances turn out in an unexpected way that you could actually be looking at being prosecuted, having the police come round, ending up in a police cell, perhaps the thing wouldn't even proceed. You might not even be taken to trial. But the very fact that the criminal justice system could be involved, I think that it would need to happen once and the effect on the community could really be quite devastating. As I say, if somebody genuinely sets out to cause harm, that's a very... Other than something like Shipman or something like that, it's very, very rare. But absolutely should be dealt with. I think it can be adequately dealt with through the current criminal. It would be suspended, sacked, prosecuted and all the rest of it. But if there was in people's minds, if we are talking about cultural change, how people can sometimes get the wrong end of the stick or exaggerate concerns and so forth. But if they thought working in what can often be a high stress, often an under-resourced, difficult environment, if they've got hanging over them, if somebody goes wrong here, I might end up in jail, then one would fear that they would start to take either an appropriate action or simply give up. At a time when we're struggling to attract people into social care sectors and indeed into some medical sectors to make it even more scary, I think we could have a potentially devastating effect on the professions out of all proportion to any harm that would ever be saved. I'll just concentrate, if I may, on the duty of candor aspect of this. And the answer, I think, is absolutely not. There isn't any danger of the effects you described of the duty of candor. We're talking about basic humanity and ethics here, telling people the truth about something that's happened and may have caused them really significant harm or lead to significant harm. The other thing to remember, I think, about your statutory duty candor proposals is that it's focused on the organisation and a really important obligation that it places on the organisation, the employer, is that they are required to support their staff and that should come across really loud and clear. So it's actually the opposite effect. So it should make people feel more confident that their organisation has to step up to the plate and actually provide the environment and support the culture that's required to enable them safely and humanely to actually fulfil what, for most people, is a professional obligation anyway. And the last point about it is, of course, that not only is this about basic ethical practice, patience rights, and I think there should be some reference to this incidentally in the Patience Rights Act. It's a strange piece of legislation for this kind of thing to sit in, if you like. Maybe it could be cross-reference as part of the Patience Rights Set-Out in the Patience Rights Act. But not only is it grossly unfair just for people to be denied the information about their own treatment or a loved one's treatment, but the organisations who are prepared to act in that way are precisely those organisations who end up being the subject of a scandal, the mid-staffage years, the Morgan bays, and many others that we've seen. If you're not prepared to actually be open and honest with your patients who you've harmed, you're very unlikely to be an organisation that will learn lessons to improve patient safety. So not being open and honest with patients or families is a scandal in its own right, in actual fact, and dealing with it will also help patient safety and hopefully avoid some of the other consequences that people are worried about. Anywhere else? Just really as a minor point of clarification, my answer to Mr McKenzie was primarily focused on the wolf on the glight proposals. I wasn't suggesting people would end up in jail for lacking a duty of candor. I think there is an interesting issue, but much less around the duties of candor. I think it's larger around people not being sure when the duty kicks in or when they should be doing stuff. I think the real fear that we have is around the wolf neglect stuff. The duty of candor, I think, is provided that people are supported and properly educated and clear when they need to do it. I suppose that the one burden that might come for patients is if you have an overly enthusiastic people who tell everybody about every little thing that's going wrong. So that might be a slightly risk averse behaviour, but the main answer that I was giving to Mr McKenzie was really particularly directed at our concerns around the wolf on the glight, not an introduction of a duty of candor. Dennis Robertson, following by Richard Lyon. Thank you very much, convener. I wonder if we can pursue this just a little further. I should state, convener, that I'm actually finding this a bit difficult to some extent, having looked at the case studies provided by Citizen Advice. I am the parent of a daughter who died, who didn't recover from surgery, but we had to look at the pathway of care. The thing that I want to examine from you is that it's an intentional aspect or maybe something that could have happened that didn't happen. It's not maybe neglecting itself, but unintentional consequences to some extent. But when we looked at the reasons behind my daughter's death, it was the whole pathway of that introduction into her care within the medical profession, and that was looked at independently and the outcomes. Now, when we get the outcomes, we know that they've changed the process and procedures, and we know that that's actually saving lives. What I'm actually coming to is, if we accept that there can be unintentional consequences, is it not a positive thing because it's a learning thing? Now, okay, there was, in my own case, a situation which we would hope never happens to anyone else, but from that, a lesson was learned in a positive outcome. Therefore, we actually accept that if we look at what has happened and we're open and honest, we might not always be satisfied as grieving parents with the outcomes and answers because it doesn't change a situation, but if we know that there's a positive outcome and a learning from that, is that not something that we should welcome? Our clients would welcome. A lot of the work that the patient advisers do with clients is about managing their expectations, what does the client want to gain from making a complaint, and often people are making a complaint just to start that dialogue as you've obviously been able to have with the health professionals to find out what happened, if something went wrong, and if the outcome would have been different if something had been picked up at an earlier stage or something had been different, and certainly we would always want, you know, clients are very happy when they get an apology and when they get information about the lessons that have been learned and the sharing of what went wrong or best practice will be shared so that this won't happen again because a lot of them, their main aim in coming to us is just they don't want this to happen to the next person if we would absolutely welcome anything that encourages that. I think my point is that the legislation's statute perhaps doesn't change, it may change it, but what I'm saying is a process is already there that can be followed, and I think that we can, you know, we are reliant on the health professionals then to reflect on what has happened and then have that engagement with family. Is that not something that's sort of written in already within the health boards and is managed in a maybe a satisfactory way? As I say, we might not welcome all the outcomes, but what I'm saying is a learning thing, so it's already there. Do we need statute to make it better? Could the panellist who wanted to come into the original question take both the questions at this point. Dr Heddy, you wanted back in, and Mr Whale and Walsh wanted back in. Just briefly, thank you, Mr Chairman. I completely agree with what was being said there, and it must be dreadful in that circumstance to be able to have to engage and think about it. But we would absolutely support this idea of openness, of developing an ability to speak to brave parents in that circumstance and to make sure that people learn from it. If at all possible, nobody else has to go through the awful circumstance, and we absolutely support that and would work, and indeed do work with other organisations and educational classes and so forth by ourselves to try to support that. I suppose the question really for this committee is to decide will the statutory duty make that better, or will it not, will it inhibit it, or will it be neutral? I'd say that there's arguments for and against, and perhaps at the end of the day we don't fully know around the duty of candor, but I think that that is obviously what you need to and your committee need to deliberate on and decide. Ultimately, I think that we would all at the end of the table be agreed that where something like that does happen and there's an adverse outcome, that absolutely the family need to understand what's happened, the staff need to be absolutely open, there needs to be within the organisation and at every level, and I think there's points being made on the number of occasions that medical care now is often a very complex journey and involves a whole lot of people at different points in it. For proper learning you need to involve everyone to be open and to move forward. The question, and the worry always is, as opposed to the legislation, if it targets individuals that will that support the culture, will it support the outcomes that we all want to see, or will it just inhibit it? I think that the jury is out perhaps on that. The duty of candor of course doesn't target individuals, it's focused on the organisation, but it's absolutely our understanding and we deal with thousands of families every year whose lives have been devastated by things going wrong in healthcare, that they need to see the kind of outcome that you described and that that's a great comfort to them. Most people just want the acknowledgement, the apology, learning to arise to make it less likely to happen to someone else. For the most part, of course, good organisations and good health professionals are doing this as part of their daily practice. However, we all do know as well that a small but significant minority of professionals and organisations don't operate in that way. And so what the duty will do is not effectively say to people that that's an option, you know, you can either do good practice, we recommend you do, but if you don't, we'll tolerate it. This will make it much more likely that everyone will have a more constructive, positive learning experience and resolution of their tragedy, their concerns. And as I said earlier, if an organisation is doing that regularly, consistently, and they're not given an option of opting out, it's also more likely that they'll take that learning and actually go forward and change things. And unfortunately at our organisation, we have seen those examples of where those discussions don't happen. And I have to tell you, as well as having the organisational implications of not learning to make it less likely to happen again, the harm that's caused to families like yours when they've not been dealt with in the way that you were can be as devastating as the actual harm in an unintended patient safety incident. So it's a win-win situation if we actually get this right and support it in the way I think we'd all like it to be supported. A brief comment in response to Mr Robertson's very personal example, I don't think there could be any piece of legislation ever drafted which enhances the value of a personal apology and a sincerely given apology. I don't think we can draft anything that will ever replace that. I think the best that legislation or policy or regulation can do is perhaps look at the processes that accompany that. So an apology is given, but importantly we review what happens at that time. We look at the process, can we stop it happening again? Can we put an action plan in? And within a healthcare setting, most boards in Scotland now have protocols which will allow a personal apology to be given without admission of blame or liability and in some cases also to look at practices and processes. So again, I think the question is just exactly what you've said, will this legislation bring anything else that isn't currently there? Whilst an organisation can look at protocols and processes, an apology has to be an individual thing. I think having an organisation sending somebody in that perhaps has not been involved or has some understanding of perhaps what went wrong in those individual circumstances perhaps takes away from the value and sincerity of that apology. Richard Lyle. Thank you, convener. Can I turn to the submission that Mr Walsh, Peter Walsh put in for his organisation action against medical accidents? Basically he's saying in the submission you work closely with ministers in England in regards to the duty of Canada in the air bill and then go on and say that we believe that if this is introduced in the right way, the duty of Canada will represent the biggest breakthrough in patient safety and patient rights in Scotland's history and place Scotland amongst the basically the best in the world. But you do have major concerns about how the bill is currently being drafted. You then go on and don't pull any punches in regards to clause 21 and suggest the amendments and you basically want to change wording and add definition. Can I ask you and also the other witnesses what would you, whilst it's quite early, what you would suggest be changed? What steps are you taking to, as you say, you will work closely with the ministers in England? What steps are you taking to work closely with the ministers in Scotland in order to ensure that we do get this right and do get the points that Dennis Robertson and other people have said earlier in order to ensure that we do get the best in the world? And can I ask the other witnesses what steps are they taking in order to discuss with the Government or other people in order to get this right? But Mr Walsh, I'd be very interested. Your report was very good. Didn't pull any punches, so what you suggest that we do in order to ensure that we get this the best in the world? Thank you. I'm glad to say that we've had a very positive relationship with ministers and officials from the Scottish Government. I've already held one meeting with officials who are working on this and I was very reassured to hear that the policy intention behind the legislation sits very neatly with what we're asking for in our submission. So it's perfectly possible to amend the legislation and, of course, to frame the eventual regulations and the guidance in such a way as that they underline these points. Those key points for us are being absolutely clear about this issue of potential harm and potential harm. Harm might arise in the future being included. It shouldn't be the case that the NHS or nursing home conducts its own investigation and only at the result of a rigorous investigation where it has been found conclusively that harm was caused or there was an unintended harmful incident that you speak to the patient or their family. They should be involved at the very first stage that you suspect that may have happened so that they could be involved if they want to be in the investigation. So many investigations we see have been conducted without any input from the family and then when they see the investigation report, they say, well, if you'd only have asked me, I could have told you it didn't happen that way and it's all got to start again. So that's really, really fundamental. The other thing is the training and the support. That has to be there right from the very beginning. I think we all agree about that. We've mentioned that this is mostly about underpinning culture change and supporting the service and staff in doing the right thing. However, there needs to be a stick at the end of it. Otherwise, what's the point of it being in legislation? So being clear about that, there's a point about this definition of incidents. Very important that, and I understand this is the policy intention, that omissions are included in that. So a failure to diagnose, a delayed diagnosis that is subsequently recognised, that's an incident. It doesn't have to be a physical slip of a scalpel or something that you can physically see and define. I think it's gone wrong in someone's care that has the potential to result in harm. I have to say that I agree with this point about apologies personally. Of course, when carrying out the TGP procedure we all would want and expect there to be an apology. But we have a difficulty conceptually about requiring an apology. So if the family or the patient feels that the only reason they're getting something with the word I apologise in it is because they have to, because it's been said in statute, there's a danger that that will actually be diluted. We think that good practice is best dealt with in the guidance, so there's lots of good things that could be said in the guidance about how to deliver information and how to make a meaningful apology. To my mind, an expression of sorrow or regret isn't a meaningful apology. That's just human regret that something has happened. If that something should have been avoided, you want people to take some responsibility for that as well. Totally agree with Christine's point about support. This is very, very difficult time for people. It's the kind of specialist support that both the patient advice and support service and specialist charities like our own are very well equipped to help with. There's one potential gap in the legislation we pointed out to officials, which I think they're minded to have a good look at. That's what happens if the treatment where there was an unintended harmful incident comes to your attention that you're not the provider of that treatment. Quite often a GP will see or surmise that something went wrong in hospital treatment or vice versa. Now I'm not saying it's exactly the right way to do it, but this problem was recognised with the English version and they've made it a requirement that if something comes to light about the treatment provided in another provider to your patient even though you didn't provide that treatment you can't just say, well, it's nothing to do with me, keep my lips sealed. You need to actually go back to that original provider and say, do you know what? I think you need to be having a discussion with my patient about X, Y and Z and then that duty carries on. I think that would be a nice way to close that gap in the legislation. I think that's answered your question, so we hope and expect that our constructive dialogue with officials will continue and they've indicated that they'd like us to be involved in discussing the regulations and the guidance when that comes about and hopefully the training as well to get across to people that this isn't something they should be frightened of, they should welcome it, but they need the understanding and the skills to do it well. Any other panel members? Dr Henry. Thank you, Mr Chairman. We are talking about engagement. We had a very helpful meeting with the Scottish Government group under Professor White, who are looking at drafting guidance to discuss our concerns. As I say initially, we were making the points we made earlier, but feeling that if the legislation is going ahead it's very important that we get the guidance right and off the back of that, I've been asked personally to join the Professor White's group to help look at some of the drafting of the guidance. Two big areas clearly around definitions and the other issues around monitoring. I won't go into huge details because a lot of it is around when would the duty be triggered, what would the event be that results in our particularly if we were to go as far as looking at omissions. I say this probably more in my experience than in a GP in Dundee for 10 years. The nature of practice is that you won't necessarily get everything right first time. Indeed, if every patient I saw that potentially had a serious diagnosis you immediately referred for investigation or treatment, you would grossly over-investigate what you would bring the secondary care system to its knees. The question would be if I've seen a patient two or three times with some vague symptomatology that they did have a more serious illness that would I have got it perhaps a week or two before? It may make no difference to the outcome but is that now I would hope, in fact not only hope, the way I would have the way I practice medicine was I would have had the conversation with the patient and said look and I certainly wouldn't be trying to cover it up but if I then had a saturated duty do I need to get an independent doctor to seek my care to feed back? That certainly from a GP perspective I would suggest would be unnecessarily burdensome or it would be unworkably burdensome and I don't think it's really trying to do what it's all about because the nature of your relationship hopefully with your GP it wouldn't be based on that sort of thing but you could see that for practices if they didn't have adequate training support and clarity and the definitions of at what point should something be triggered off so there's that again some of the suggested discloseable events in a hospital I don't want to go through them in detail but things like which you can see at one level makes sense of things that we're talking about patients having to be transferred to intensive care unexpectedly returning to theatre being re-admitted to hospital yes I can see where it's coming from but what you wouldn't want is that if a situation were to deteriorate that in a clinician's mind was well be better not send them to ICU because that would be a discloseable event or things like that so it's trying to be quite clear what the threshold of harm is what is the threshold of the event and when we're getting somebody independent to look at it or critique it I would suggest it has to be of a certain level of gravity and I think to take Mr Walsh's point involving the family and involving external or people who have not been involved absolutely for very serious events but I think it would be quite impossible for every single thing and we know that something like 10 or 15% of clinical events there is a problem most don't result in harm it's very difficult to produce very difficult to predict future harm so again I think we're very keen to engage with Scottish Government to make sure that any guidance that comes out is practicable and actually supports the profession of being able to deliver good care Anyone else? Christine Watt I would just say that we would want the ever-processed introduced to be as simple as possible for the members of the public racing concerns or being made aware of this rather than just focusing on the impact this has on the health professionals if somebody wants is unhappy or is made aware of this as possible Can I concentrate just for a minute on a point Dr Robert Henry made earlier about trust for doctors I trust my doctor implicitly and most of the population do and I take the point that you're not a psychic when I walk in with something you have to do tests etc but one of the comments that was made and Bob Doris made a statement on it earlier he might feel that Scotland the Scottish Infected Blood Forum one lady said that for 12 years she hadn't been told my view is that a doctor should be honest, forthright and tell patients exactly, I know there are some patients who I don't want you to tell me you know don't tell me about that you know I honestly agree with me that doctors should be in the high regard we have for doctors that doctors should be honest, forthright and up front at all times with their patients Absolutely couldn't agree more I have to say as a GP if I had been sitting on a piece of information that one of my patients had contracted hepatitis and I didn't tell them to be taken to task I'd expect to be sent to the GMC frankly I don't know all the stories but that is so far from what one could expect as reasonable conduct I think the whole clinical relationship and the way medicine is moving is about shared decision making it's about because if there's no trust frankly the whole point of the exercise is lost and it's how we support all that is easier in general practice or it certainly used to be and I think sadly one of the problems we see in primary care is perhaps not what it was perhaps in my day that's probably another issue for another day but the whole relationship for it to work indeed for the patients to get the best care has to be based on trust and respect mutual respect and all what we're trying to do is to make sure we support that as far as possible but I think that's a long way of saying I agree with you thank you Cymru Colin Kear I think my question has answered a couple okay Colin, and Nick Mellon good being here, my apologies for being late arriving late this morning I was wondering at this point if it would be appropriate to ask the panel how this ties in with the Apologies Scotland rydym yn byw'r parlydydd, sy'n mynd i ddweud y byddai'r byddau. Mae'r parlydydd yn dweud y byddai, a'r tynnu'r byddau hynny'r ymdweud yma, byddai'r perthyn ni'n gwneud eu cywreil o'r regiolau, ac mae'n ddweud o'r byddiau'n gwneud y byddai'r byddai, oherwydd mae'r byddai'r byddau'r byddau'r byddai'r byddau'u byddau sy'n mynd i ddweud yr archwyfynol i gydych chi'n gweithio'r cyfnoddau. ar y cymyswyl mawn. Llyrdoedd am y cymunedau sydd yn pryd yn cytuno'r ffordd Jagu, ac yn ddiwodol, rhaiwch yn bidon cymysythio ni'n gwybod i gael arwain a'n allu cymysythiaethon niferol. Mae'n gwaith ni'n gofyn yn fwy gennym, yn y ffordd datblygu, ar y cyfysiwch, ar ddigon gwybod i anthoedd cyffredin o gael a'r gymhau a'r ffordd a'r cyfysiwch. We have said something similar in relation to what I said this morning that the value of an apology and the law society has questioned whether or not, but only in a healthcare environment, whether Ms Bichell's bill is required because we have a compensation act, we have NHS board guidance and policies and protocols, all of which are moving to change this culture that's being used. wrth Mae'n mynd i'n dda i'n gwybod i'n gweithio'r FFAT ac mae'n meddwl ar gweithio'r FFAT. Mae'r gweithio'r FFAT y gallwn ffoedd o'r cyd-fawr. Mae'n meddwl ar y gweithio'r FFAT, ac mae'n meddwl ar y gweithio. Mae'n meddwl i'n meddwl ar y gweithio'r FFAT. gyda'r nifer o ddiflygol i'r iaith cyfnodd y ffordd a'rwymedd i'r dnyn nhw'n gŷddwch y cyfnodd y gweithio, ac i gyfnodd gŷddwch cyfnodd y ffordd, mae'n mwyaf ni o gyfnodd cyffordd, chi'n gweithio i gael gweithio. Nid y gallu chymr a chael ffordd o yourd i'r gyffordd? Rwy'n parod i siarad viduitolaeth gennym iaith gynyddoedd i'r ddiflyg y gweithio i'r griffau'n ysgrifennu. iddol, oherwydd mae rhywbeth yn eich dysgu yn lle gafodau'r penifer, ychydig â'r ysgol iawn, neu dau bod yr oedd, ac byddai'n ei wneud o weith? Mae'n cyfrifoedd yr benderfyn yn rhywbethwn yn hyn am leuddogi'r penifer cyn ymlaen i'r cyfrifoedd, yn enwedig ar gyfryd ym oedd panodol eraill y mynd i'r meddwl o'r gyfnogaeth. Nid oes eich cynnwys iddol. Os gynnwyd, mae'n trwy'n eu gallu bod yn siarad hynny. Gwych gwnaeth eich probu oedd sut i niunching inni гwaedwyr log insist yn gwleidio'r holl. Fe main yn y pwysig, I didn router Ortaghonrwy! Oen i ranks, mae oesnedd gyda'r holl iddyn nhw mewn hwy'r melodol handledrwyd Trwrdd, yn rhoi amigwledd institution, lleon hyffordd, blaenodol... Felly, absniadwch yn bach i gyd yn edrych y gweithio gŷnol bach oedd wladwch yn bach o copiad o phobl sydd o ffordd o gyda'r digwyddor y dîm yn bach o ffodol i'w llwyafio'n anod amlwgol. I'm sorry to make a brief comment. I've seen the financial assessment. If you were looking to support the change, it is useful to spend some of the money on education. Frankly, some of it might be better spent on Christians, colleagues and some advice to support patients, Gwelch ond i ddwy'r proses a chael ei ddialog, ydych yn cael ei ddodd, ond i'n cael ei ddodd i gael. Felly, rydym yn gwneud ar gyfer iawn, ond Eustafell yn addangos i'r ddweud o burdyn, yn ei ddweud o ddweud, pan yw'r cyfeiriaeth o'r cyfgredig o'r cyfgredig o'r ddweud o ddweud o ddweud o ddweud. Efallai efallai ei bod yn ei ddweud o ddweud o ddweud o ddweud. Felly. Professor Blinton. Mae'n gwybod i'r 21 yma i'r cymdeithasol a'r cymdeithasol o'ch mynd yn ymgyrch. Mae'n dda i'r dyfodol am y ddysgu. Mae'n ddysgu'r scenario yn ei ddweud i'r hosbetyn. Mae'n ddysgu'r cymdeithasol o'r cymdeithasol sy'n gweithio'r cyfnod i'r ddweud. Mynd i chi'n du dod o'r cyfnod o'i ddarlweddau am y cyfnod o'r cyfnod, ac mae ganddo o'r ddysgu'r moddog wedi'u'iuen lle yn cael ei fod i'w ffana Cyfaint, mwy'n ddysgu'r bod hynny, i'w fawr, mae'r prosiect eraill yn gyfذir cael hynny. If that they were excluded, the resource implications you would have to find somebody else to have to come in an examine this whole situation and take the time that would involve without having first hand knowledge. Other examples would be perhaps a small GP practise. How would you get somebody uninvolved to i'w gwneud hetod am y cyfarwyr cysylltu i'r ymwneud hon i'w cyfrifiad ymwneud oedd y mae'r cerddio arfod yn pethol, i'w cerddio ar ffordd y gwirio ar y cynnig i'w darnhau. Dy vwysig oedd yn lle leaderu i'u gwneud, i'n pethau i gyfrifiad, yn mynd i'w t1rw, i'r bwysig yn llwysoedd, ond mae maen nhw'n ei brifio, yn ymwybod, yn ymwneud ohan, yn ymwneud yw'r context. Ond rydyn ni i ddenprosio cyfan ar gyfer ymdyn nhw'n cyfleol tîmwysog yn ei gwasanaeth i gael ISE could be perhaps usefully reviewed to meet better use of the resource and not, and expertise and knowledge of the person dealing with the particular case. Y Llywydd, I think that as far as I can see there are two areas where there could be resource implications. This letter one just mentioned about seeking an independent health professionals opinion. We raised that in our submission and we discussed it with colleagues. I understand Felly mae'n meddwl o'r amser, oherwydd y gweithio'r prosesu Gwyddiogwyr Cwyddiogwyr Canda'r yn i'r byd i'r adeiladau, i'r ddweud o'r ddechrau ar hyn o'r ddweud o'r clinitiad. Mae'n credu bod hynny'n cael ei gwasbwysig oherwydd mae'r ddweud o'r bwrdd ymlaen, oherwydd ychydig o'r ddweud o'r ddweud, i'r ddechrau, i'r ddechrau, i'r ddweud o'r ddweud o'r ddweud, y gweithio cynyddu o gymrydau. Oes i ddydyn nhw, byddwn wedi'i gwybod, gwybod môed o y ddefnyddio rhaid i'r newydd i'r cyfnodd, ac iawn o gweithio'r gweithio'r gweithio. Gweithio'r gweithio'r gweithio ddefnyddio erbyn y mheliad, revivech y ceff بهond sydd eu hefyd ar y rhaid i'r gweithio'r gweithio, a'i gwheilio'r gweithio mewn gwleithio'r gweithio'r gweithio mewn gwleithio hefyd, ac mae'r cysylltu'r ddefnyddiaeth hwn yn gwneud. Ond rwy'n rhai, mwy gael mae'r inchos ar hyn o, oedd y gallwn yn gwneud, mae'n ystafail cymdeithasol sodd ei wneud am ddoedd. Ond yw eu mynd i'r fan hyn yn ei gyd, mae'n hi ddim yn ddim yn ddim. Rydych yn ddim yn hyd da. Yr wych yn ddim i'n ddweud, mae'n cymdeithun cysylltu yng Nghefyd, dydyn nhw os ydych yn gweithio ar gyfer gynllunol a'r gyflawn o'r gweith. cyntaf y gweithlau hwnnw, mae'n gweithiaeth Juddau Llyfr, y gweithlu modus. Wrth i. Rhyw wrth gyd, Rhyw beth rydyn ni'n ffawr o gweithlu. Y gweithlu bod, mae'n cymhwynt y cyfan na'r gyflwyniad. Wrth i, mae'n gweithlunib i'r gweithlu am tafnod o'r dod, wrth gweithlu sy'n gweithlu gwaith o'r gweithlu, Mae'n cael llawer iawn ychydig o crises yn y gyhoeddunion i'w agor am y gweithio'r ysgol yng Ngheirwyr yn modd, ond bydd y gallai ymryd i'w ddau gofynu'r gwybod o gweithio'r digon o'r gwybod a'u digon i'r gweithio'r gwybod. Gwasanaethu'r adeg, gweithio'r bwysigio, gyda'r adeg, yw arbenig, yw'r adeg yn ei gwybod. ac wrth gwrs, mae hyn yn ddysgu cael ei choesol, yn gweithio, ond ei wneud y ddysgu acef. Efallai ei wneud yn fawr, er fawr ethyguethau acef. Rhawn, Mike. Felly o'r risoedd yw'r crsgawd? Christine, mae'n rhaid yn gweld i'n gwybod. Efallai eich gweld i'r risoedd. Efallai eich gweld i'r risoedd, mae'n rhaid yn gweld i'r risoedd sydd tîm ar hyn i'r effeithio'r llesnig i'r ddweud o ddilydd o'i gwneud, ddylech, ddim yr ydych chi'n ddod? Mae'r ddod yn ymlaen i'r ddod yn gweithio'r cander, i wneud, dwi'n teimlo nhw, enw i'r ddod yn ystod o'r saffydau cyfafoddau, mae'r digwyddau cyfan o ddod yn cyfeirio'r saffyddiadol o'r braffau cyflogol yn y ddod, a mae'r ddod yn ei ddod. Mae'n ddod yn ystod o'r saffyddiadol, ddod yn'r saffyddiadol, Is that the one. It's not all of it. Bob Doris, is that the last question? You could add that it's not actually a question. We got some of the information from the Scotland Effective Blood Forum in the HIPC. I don't want to intervene, during the discussion and questions about receiving a meaningful apology. It would be reasonable, given that they would be following this evidence session, to put on record that, in relation to infected blood, they were pretty clear that, whilst they really, really appreciate apologies coming from the likes of the First Minister and the Cabinet Secretary for Health and Well-being, it was much more meaningful when the Blint Transfusion Service said something. I think that it's important to put on record that they felt, yes, getting the corporate apology at the top is meaningful in terms of systems changes and learning as a system. I think that Unison said something about that last week and their evidence, but for the people affected, getting that apology as close to where the incident took place is far more meaningful for them, and that was some of the information that we got, so there's not a question on that. It's just that I think they would like that reflected on the official record here today, given that that was one of the discussions, convener. That concludes this session. Can I thank you, on behalf of the committee, for your attendance here, for your written evidence and the contribution to your inquiry? Thank you all very much indeed. We're going to suspend at this point and set up the next panel. Agenda item number three, which is our first evidence session on palliative care inquiries. Before we move on to taking the evidence, I would like to put on record our thanks to the staff and service users at Rachel House in Cunross and at Gown Hospice in Greenock for hosting members of the committee this week. Others yesterday that we found a visit to at Gown Hospice was extremely helpful and useful, and although Rhoda is not here today that I spoke to her, she was reflecting the same sort of thoughts on her visit to Rachel House, so thanks to everybody who made that possible and made this inquiry all the more meaningful for that engagement. We welcome with us today Amy Darrell-Lymbrill, head of policy, Alzheimer's Scotland, Tricia Hart, senior Macmillan development manager here in Scotland. Richard Mead, head of policy, public affairs, Mary Curie, Maria McGill, chief executive, Children's Hospice Association Scotland. Welcome to you all. In the interest of time, and we don't expect any opening statements, we are moving very quickly to our first question, which is from Malcolm Chisholm. Thank you all for very detailed written submissions, so they were all extremely useful. If I could just focus on a couple of points in Macmillan, which may introduce some issues, you say that there is a growing misperception that palliative and end-of-life care is a generic speciality that can be universally applied across all conditions. You give an example, cancer creates a unique set of challenges. You also highlight what you regard as another misperception that all cancer patients receive good palliative and end-of-life care. Do you state that between one quarter and one-third of cancer patients have not been identified as having palliative care needs? Obviously, there is a legitimate emphasis in all the submissions that we have to extend palliative and end-of-life care to many conditions, not just cancer. I think that there is an emphasis in many of the submissions that there is a role for generalists in relation to palliative care, but I suppose that I would just like to explore what potentially could be the tension between those things, but I am sure that probably is not really a tension because they cover the totality of the issue. If we could explore that, that would be helpful, I think, for the committee. Absolutely. We are here to support palliative care for all. We need not diagnosis. Within cancer services, there has been a lot of emphasis on delivering palliative and end-of-life care. However, as you know, with the growing increase in patients with a diagnosis of cancer, living longer and sometimes we know through speaking to patients and the family members that they absolutely do not always get the care that they need, particularly during that palliative and end-of-life phase. I think that we from McMillan would welcome that we have got lots of experience, what we would like to extend and support palliative care right across all diagnosis. I think that we are in a unique position that we have had a lot of focus around palliative and end-of-life care. We have got a lot of skills within the clinical nurse specialists. We support the upskilling of generalist staff. There is a number of patients out there who receive palliative and end-of-life care from a cancer diagnosis that receive care from generalist staff right across the piece. That could be in their own homes, it could be in the hospital situation, and it could be in care homes or wherever that person is needing care. Would the others like to comment? Richard, would you like to comment on that? Just on terms of your first point about being a generic form of care, palliative care is probably one of the truest forms of person-centred care. That is what is really important to emphasise, is that palliative care can be very different to different people. It should always be the patients and their families' needs put at the centre of that care. Of course, it is holistic care as well, so it is not just medical interventions, it is not just pain and symptom management, it is often about emotional, spiritual, psychological support, as well as planning in terms of what people would like to see, what matters to them in the time that they have. It is really important to emphasise that palliative care is truly person-centred care and it can be very different depending on the different patients and families that receive it. First of all, I thank the committee for enabling the voice of children and families to be brought to this inquiry. Children and young people's palliative care is perhaps a little different in several ways. One of those ways is the range of conditions that we in children's palliative care see over 400 conditions and very few children and young people with cancer. In fact, in 2009, the latest numbers that I have of the 450 children who died, only 36 of those had cancer. It is a different situation that we in children's palliative care meet. Having said that, it is really important that every one of those children and young people who have a life shortening condition receive the best possible quality of care possible wherever they are and whenever they need it across Scotland. Our point would support what Milena is trying to say. Our view is very much that the literature around palliative care and the experience of palliative care tends to be more around cancer than other conditions. The research around dementia and palliative care is actually still developing and relatively early on. We would suggest that palliative care is not generic in itself. You need the two specialisms, a condition specialism and a palliative specialism, to come together and to be working together in order to have the person-centred care that Rich is describing. The four of us, I think, are probably agreeing, but we would just come to it from very different places. Thanks for that, ma'am. I'm happy with that at the moment. Can I move on then to Dennis Robertson? I suppose that one of the problems is that palliative care seems to mean different things to different people. Even within the medical profession, we were hearing yesterday from a specialist nurse in palliative care that junior doctors, when they talk about palliative care, think that it's end-of-life. Perhaps the perception in the wider community is that when we talk about people requiring palliative care, again for many, it's towards end-of-life. Rather than the holistic aspect that Richard is talking about, I'm just wondering, is this part of a barrier that we need to actually get out a message, a clear message, that palliative care is this person-centred approach to the needs of the individual and it's not necessarily on end-of-life. Again, it's not just for cancer patients. It would be helpful if I was allowed to. I'll let Malcom away with it. You see how quickly they think advanced teams, don't you? Is that calling their own answer? I shall prevail. Amy. Thank you. Now lost where I was. No, I would certainly agree. For us, we're looking at the development of what you call an extended palliative phase with dementia. Prognosis is really difficult with dementia and identifying end-of-life in dementia is very difficult, particularly when somebody is dying of dementia rather than just with dementia. You might die with dementia in that you're dying of something else but dementia is impacting on your experience there or of dementia. If you're dying of dementia, identifying that end-of-life phase is very hard. We'd encourage a palliative approach really a lot earlier on. The language around that is something that we need to work out how we approach that with families and with people themselves because of this conflation between palliative care and end-of-life care. Again, that comes from where the palliative care approach comes from in terms of it being developed with specific conditions in mind and now we're trying to broaden that approach out to other conditions and we need to look at how we adapt it and how we therefore adapt the conversations around it as well in order to enable families and people with conditions to be comfortable with it and to accept that and to mean that and therefore to enable them to access it and access the benefits it might bring. Anyone else? Richard? Thank you, convener. I think there's a couple of points that I'd like to pick up on. There is a comparable symptom burn in all types of termin illness that palliative care can support and palliative care should be introduced from the point of need and that can be very different depending on the person or their condition or conditions so it could be years, it could be months, it could be weeks, it could be days and I think that's really important and in terms of what you were talking about in terms of barriers we need to make sure that there is enough training and education for not just specialists in palliative care but also generalists and that's GPs, that's district nurses, that's consultants and hospitals, different specialisms as well to make sure that they understand that and how to link in with palliative care when the time is right for that particular patient. Sometimes it's just the start of a conversation and actually when somebody is seriously ill there is a point in which somebody approaches them and talks to them about that condition and talks to them about what matters to them in the potentially short time they have left and then to plan for that and that's something I think we need to look at in terms of training and education as well but it's part of I think a bit of a wider issue around having open and honest conversations and that's not just an issue for our healthcare and social care professionals but actually it's a societal issue, we need to have more open and honest conversations about the end of life, about being terminally ill and what that might involve and how we can approach that. I would wholeheartedly agree with Richard that this is a societal issue. Open and honest conversations are incredibly important for everyone and particularly when I'm thinking of the children and families that I'm representing. For children, their time span of their condition may extend into years so palliative care for children is often around for years and should be involved at the point of need. One of the barriers is that perhaps the benefits and impacts and positive impacts that palliative care can bring to a child with a life shortening condition aren't perhaps as well known as they might be to families and particularly to professionals on whom we rely for referrals. So I think that we have a multitude of barriers, one being the willingness of all of us in society to have open conversations about what we would wish in terms of our place of care and place of death, but also particularly for children the benefits of early referral to palliative care. Just to add again and agree with what everyone's saying here just around the palliative care agenda and issue for people and this is about everyone's business, it's not just about the clinicians, it's not just about the social care staff, it's about the people, the public themselves as well and being able to find it in themselves to understand at what stage does their needs become palliative and using things like holistic needs assessment which actually goes across looks at a person centred approach and really identifies for that person what the real needs are for that person and that often can be some things that it could be housing it could be something else that is sometimes not always key to that actual diagnosis so it's about really identifying these needs whether that be I mean palliative care could start very early after diagnosis and again as Richard said that's different for everyone every person. I just want to add something as well is that people's palliative care needs can change throughout their condition as well so they may end up needing some quite intense support at the start they may have a then a period of sort of needing less services so it can sort of come in and out it doesn't have to be just once you get palliative care you get a certain level right through it can change as well. You can you know I was waiting to be asked. Yes. Trisha, I wonder, it's everyone's business. Professor Clark has stated that as well he also said that you know Scotland's providing some of the best palliative care in the world but he recognises there's still a lot to be done in recognition of that and to hear Richard Mead's point that things change. Whose business is it really to identify when a person requires palliative care in that journey in that pathway because they could be having care at the moment from someone else say it's social care for instance and then is what is the trigger to palliative care and who identifies it and at what steps do we need to ensure that people get the care that they require at the time of need. I think again that goes back to looking at who upskilling generalist staff so that people right across the piece have got skills to be able to recognise when that person's needs change. An example of that would be looking at the improving cancer journey that we're supporting through Glasgow City Council and NHSGNC just again identifying that person's needs at that particular time and either signposting them or direct them back to whether it's a clinician, whether it's a specialist, whether it's the GP, whether it's a district nurse or whether it's social care. So who's the relevant person to support that person at that particular time so it goes back to again making sure that staff right across the piece are skilled to be able to recognise. Well that's through conversation, it's through sitting down supporting someone with a listed needs assessment, looking at anticipated care planning, so all these things are getting taken into consideration to help identify so I think it is everyone's business. It was just interesting what the distinction Dennis made between social care and palliative care and say that there's a full range of professionals involved in delivering palliative care at the moment who don't necessarily recognise that they're doing that but they are delivering palliative care. There's an argument to be made for dementia that all the care delivered there is palliative because it's not curative in that very stark definition of what you might make of palliative care. In terms of the trigger for when palliative care specialist services might need to be brought in either to provide care or preferably for us to support those professionals already providing care to continue to do so because that continuation of personnel is very important for people with dementia and other cognitive difficulties. We'd say that that needs to be done in a multidisciplinary way by that whole team who are in an ideal world working in a co-ordinated way to provide the health and social care supports for a person with dementia that are all interacting with each other and helping that person to have the best quality of life. When palliative care specialist is identified as being necessary to support that delivery and to maintain that quality of life then it needs to be brought in but it needs to be done in a team way. It needs to involve the person where possible and it needs to involve those closest to them as well. I was just going to say that it is everyone's business and there are a range of screening tools out there to help and support professionals in identifying people and triggers for palliative care and I think it goes back again to the education and training and making sure that when we have good and useful tools that they are supported and widely used and that health and social care professionals have the training and support to use them. Dennis, you were asking about triggers and identification. I think for children's palliative care it's really important that all health and social care professionals have an awareness of what palliative care can bring that referral to palliative care service for a child with a life-shortening condition does not mean the end of curative treatment. It simply means that that child and family have access to a life-enriching experience and to professionals who are perhaps better able to manage symptom management and who have time and the ability to sit down with families and understand what matters most to them and to work with the entire team around the child and to help make that happen. There is something about an awareness for everyone in terms of the tools and identification. There are some for adults for sure but in children's palliative care less so it's a newer specialty within palliative care so we have some research to do to get those right. Sorry to add again one of the triggers is around even the carers so just identifying so if carers are recurring just identifying their needs as well and it could be a frequenting into say one of our information support services into GP service and that's where the trigger comes it's there not coping and that's when it's identified that the person they are caring for has got other needs. Bob did you? Yes, I appreciate that. I'm very interested in what Amy Doe is saying about social care and where it naturally develops into palliative care and I think a lot of it goes unrecognised and is part of good quality social care and understand whether specialist palliative care being provided and other witnesses can give quite powerful examples of that. There's this perception that it kicks in at some point but I think a few of us will have personal experience with poor families but it's not a case of something kicking in. It's a general deterioration in particular with dementia over a period of time which comes with getting old and frail as well but also significant issues with dementia and whether that's in a generalist social care sector or a specialist unit and it's about how we map some of the good quality palliative care that exists out there for example vascular dementia where people unlearn basic things such as being able to swallow and eat and chew and communicate and how we map the good practice that's taking place there and how we support as appropriate because I suspect there's a significant amount and I'm drawing from personal experience a significant amount of people in the if you like general social care residential sector who have additional palliative needs and it's a mixed bag as to how they have been provided and I'm not sure that local authority and third sector organisations are able to maybe develop a system where you can identify where additional care resources are needed or drawing other agencies to support that. So how do we map some of that out and I'm aware I'm talking specifically about dementia but how do we start to map some of that out and quantify it because I suspect there's been an unmet need for generations in the residential care sector and it's okay to admit there's a gap there and work towards trying to address some of that. So how do we map some of that out in terms of providing the evidence and then the method by which to deliver and improve the quality of care for people in those situations? I'm going to have to try very hard to be brief with this but we can have a full other meeting about this ourselves if you're interested in that and I'm happy to do that because this is something we've been looking at in a lot of detail and we'll have a full report on how we envisage this being provided and how we think it should be provided published towards the end of October which I will of course send to members of the committee but briefly in terms of residential care there is an under diagnosis of dementia in residential care so there are people with dementia in residential care who we don't know have dementia and that means that they're not necessarily getting their needs met. You've also got an issue with you've got pockets as you say of really good practice whereby you've got a hospice joining up with a care home and their sharing skills or you've got really good relationships between say a community hospital and a care home and their you know kind of sharing skills there because it's about bringing the health element into it as well so for example those swallowing problems you're talking about that needs a speech and language therapist and that is not necessarily going to sit with the local authority that's about sitting with the health board there as well so we're hoping that the integration of health and social care and the integration of those budgets should lead to more co-ordinated support there but it is really crucial and I'll kind of tribute to the independent care sector they're recognising this and kind of starting to do their bit in terms of trying to make links with the new health and social care partnerships but it is crucial that that partnership exists with the third sector and the independent sector as well to make sure that there's that co-ordination it's why we suggest that somebody with dementia requires a role of a dementia practice co-ordinator to co-ordinate all those all those parts of care that are needed to make sure that somebody that somebody is supported in the way that their best can be and also so that those care staff who you're talking about in a care you know kind of in a residential care home aren't being asked to do a very complex care support job unsupported and untrained they need access to training and they need access to specialist support to enable them to provide the care that they're expected to. Anyone else? I just wanted to kind of wonder if the other witnesses would agree that we have to get better. Sometimes we quantify when something major happens or there's a diagnosis or a significant downturn in people's health and that's when pallative care kicks in and that's when we start to count it. We do the bean counting of pallative care if you like and we have to get better of realising that pallative care builds up gradually over time and we have to get better at quantifying that. I won't come back in after that, but I think that that's a more genuine point. You prompted some response anyway. We'll see when you get the response whether you want my kind or not, but we'll see. Maria, Trisha and Richard. Thank you, convener. I would agree with what you're saying that sometimes pallative care is prompted by a significant event or a diagnosis. In terms of the provision of pallative care for children, we recognise because it can extend over quite a significant period of time that pallative care is there from the beginning and so for children for example there may be a series of short plan breaks in our hospices that enable families to continue to care in the community where they want to be and then being supported by that package of care around about them and also by Chaz at home. Having access to specialist expertise as and when they need it and so sometimes those short plan breaks over a number of years are simply what's enough for families. They are described as a lifeline for families that enable them to go back home and then as things change as they often do then we're able to hopefully seamlessly come in and support the family with some specialist support and indeed support that team around that child which is an incredibly important part of the work so thank you. I think just to add to that again around that transitions of care and looking at risks for people where we've got lots of experience amongst all of us amongst the clinicians, social care staff, so we there is an area that we do know or relatively know that someone at some stage will require pallative care so it's about identifying that very very early on and again using the tools that we spoke about to support that and making sure that things are actually in place before we get to those crucial points, before we get to people having to be admitted, their choice of place of death is not a dear too because things have just fallen through and it's about having sort of single point of access so that people particularly in residential care care homes have access to that kind of breadth of care and support that's out there to support them in their own home. I think we'd all agree that there is great examples of care being taken place in social care settings and in primary care with GPs and district nursing without the need to refer to specialist pallative care but I think it highlights a bigger issue is that we just don't have the data and the information and to understand what the true picture is out there. To give an example I mean there is I think just short of 12,000 people on the pallative care register yet 40,000 people are estimated to need pallative care that die each year so where are the rest and how do we understand what that number truly looks like? I think big part of the issue is identification and doing more to identify people that have pallative needs and in whatever setting that they are in and that'll help us understand where the examples of good practice are, where there is unmet need and what we potentially could do to meet that need and improve care. Some of the discussions we had yesterday just come back to those triggers and how people are referred. You know that we had a discussion in Greenock yesterday where people referred themselves, it was word of mouth and it was not to access pallative care it was to access transport and support to get for chemo radium in Glasgow so those transport services they availed themselves of other services. They had gone along but it was difficult to get them to confer them who referred them there or what is it word of mouth so even those who are accessing. The other thing that came up I think is people will seek that pallative care because they've got knowledge and association and we know it's more accessible when you've got a cancer but to have that difficult discussion about the curative pallative situation in COPD or heart disease people believe in some cases that they're moving on to pallative care that's it they have done all that they can for me I've been sent home from the hospital you've heard all of this you know so you know some of those people don't want to avail themselves of that because of you know the perception and culture that others don't know about her and others could benefit from it who are not benefiting and you know and I think that's the committee's job to try and pick their way through that. Richard? I mean I think it's also it's important to have I think sometimes access to pallative care can come very much down to who you see which healthcare professional and there are examples of great care provided by general practitioners who will and it's not just for specialists but for generalists as well generalist care and I think if you've got a GP that's prepared to have those open and honest conversations sit down with the person talk about what they might need what's important to them then you know they get good care but that just isn't happening in every setting and I think that is really important point is that sometimes it can come down to who you see as to what level of care you get and what access to what care you get. Tricia and Maria? I think Duncan just you expressed an opinion here around that everyone with a cancer diagnosis gets access to the pallative care and we know that again as I said in the opening statement these numbers are increasing people are living thankfully longer due to really good research good treatments but some people are living longer with difficult problems and with increasing pallative care needs so I think just to make that point and second just around there is good models of care out there about joined up care and as I explained earlier around the improving cancer journey it's one example it's been driven forward by social care and that's about identifying people when they're diagnosed so that's when people really start to then you can start to do that holistic needs assessment the clinicians the patients themselves say generally they are very well cared for they've got lots of care around about them but often it's the other things outside it's the housing it's the spiritual it's the family it's the other things that are not always being addressed and I think it's looking at good examples of models of care like that which is something we'd like to to obviously extend. I'm sure that with a cancer they're more likely to get pallative care. If I think we understand that and we recognise this and that may need even in that area and I think that's a challenge about extending that principle right across the border whether that's possible to Maria. Just a couple of points just a reminder to the committee that the situation with cancer is different in children's pallative care so it's just excuse me for reminding you. The other issue I just wanted to build on the data that Richard was talking about and there is some good news around data and that CHAS supported by Scottish Government has commissioned some research from the University of York which has used to be published in November which will tell us the number of children and young people in Scotland who have a life shortening condition and where they are based by health board. It's a point in time exercise it will be incredibly useful at the moment the the numbers we have tell us there are about 4,000 children and young people at any time. CHAS saw 400 children last year we think this research will tell us there are many thousands so we have much work to do to make sure that every baby, child and young person can have access to pallative care they need when they need it and also to bear in mind that actually it's about a choice so for some families they may that I know of coming to a hospice isn't right for them so our service works hard to be incredibly flexible and so we can actually accept them into our care making sure they have access but support them in home so that they still have families still have some respite a child is able to have some outings and have some experiences they may not otherwise have and all of that happening out with the hospices where the and so it's about family choice really ensuring our services are child and family centred. Richard? Thank you. Firstly can I put on record that I'm sure everyone who wants to put on record the excellent work that all of your organisations do that help you to do for people, real people out in Scotland. I'll come to the point that Richard Mead was on about and you're touching on the question I was going to go on about and it's about data and good quality data and I'll refer to the Macmillan Cancer Support report or submission which at first I had concern about Richard but then I realised why you put it in. A recent English study found that half of the patients dying at home received no partial pain control this must improve but if you go down to the appendix you find that this is the national survey of brave people voices 2014 this data is not collected in Scotland so that's the reason why and I know why you were you were putting in there was a long bowl in order to get someone like me to ask the question why not and you put in the the fact that there are in your report should you say ten thousand eight hundred Richard we've already said over twelve thousand no one knows some people say twenty thousand how many how do we collect you know because as far as I'm concerned if someone says I've got cancer somebody will then put me up on a board and and say well you you have to be seen by so and so so and so and so and so and so um so why is this data not being collected why do we not have the exact um statistics that we do need it in order to ensure that the the great work that you guys are doing is carried on and ensuring that people in Scotland get the the attention and the care they deserve. Yeah I mean um I think it's trying to pick some of that um we don't know what the the accurate picture is um we've got best guesses and estimates and we can use things like the palliative care register as a as an indicator um so I think we need to see much more movement in this area I know David Clark picked up that in his evidence and in his report to the committee um identification I think is a big part of that making sure that we pick people up that have palliative needs and whether that's on the palliative care register or something else we actually capture that. In terms of um how we might achieve that well the Scottish government um has committed to producing a strategic framework for action on palliative and end-of-life care which will be published by the end of the year um and I hope and and I'm confident that data and capturing that information will be a big part of that framework and I think that will be very helpful. In terms of the types of data that we we need to see um which brings me to sort of your point about voices is yes we need to see the the the quantitative data we need to understand the numbers the the how many people need palliative care when they get it the kind of interventions they receive and and and the outcomes but we also need to understand the quality of that care as well so particularly um when we're talking about patients and and their personal outcomes and what they want and what matters to them in the time that they have um that we need to measure as well which is where something like voices which asks bereaved carers about the care that their loved ones received is so important and to be fair the Scottish government um the minister Jamie Hepburn did commit in May to looking at introducing voices um primarily I think at a local level in Scotland and and we fully support that and and we hope that the Scottish government um sort of develops that and takes it forward and and I think um if we can get a voices survey um in Scotland that can develop a baseline of of what quality palliative care looks like and and that'll be really important as well as the quantitative. So again just to answer the question and absolutely it just shows you that the data is there's a number of different numbers going around um I think the important thing is that we do we all agree that we do need the baseline data to start us off um GP palliative care registers are there it's we try to understand why some patients um don't they're not registered on the palliative care register is that because they're in a care home or and the the the the staff feel that maybe they need to refer them into a specialist service in order to get them in registered on the palliative care register so there's a number of things that I would agree with Richard that we do need to look at and having the support of the Scottish government is fantastic to actually get us all together and and actually get that information that's there. Just perhaps a reassurance that we will have the data for children next month and perhaps children and young people's palliative care is is leading the way in that that respect we are delighted to be able to do this work with University of York it will certainly allow us as David Clark said last week to begin to develop and test some models based on evidence given the financial circumstances what is the best model of care that can be developed across Scotland to meet the needs of these children and young people in terms of voices I would absolutely support its use it's been around and used in England for more than 10 years and Professor Addington Hall has done quite a remarkable job with that work however my understanding is it's not used for under 18s so I think if we are going to use this in Scotland we should consider very clearly the further development of that work to ensure it captures every every death. Yeah just on the data point it's really really hard to look at how many people would dementia require palliative care and I'm talking about that how many people whose dementia will impact on their experience of palliative care so there will be other people with very mild dementia who who won't impact on their experience of it quite so much. We there's probably about 46 000 people with a diagnosis of dementia the trajectory of dementia is so variable that it's very hard to predict how many of them will be coming to the end of their life but as I say they're depending on the type of dementia you'd want to introduce elements of palliative care earlier on anyway before end of life you've then got to look at where those people are but it's going to have an impact on how that's delivered most people coming to the end of life with dementia are in a care home at the moment increasing numbers are living in their own homes and hospital is still a very significant place for where people are very very few even compared to the general population who are in hospices are in hospices hospices hospices are not generally accessed by people with dementia at the moment they are a bit but it is very very few people so it's really hard to it's really hard to to work out how many people you're talking about with dementia at the moment there's some work the Scottish government are looking at incidents and when in people's lives incident people are getting their dementia if you understand what I mean it's increasingly as as older people get it that will be nearer the end of their lives so people will spend two or three years living with dementia rather than you know kind of between five and nine which is the usual trajectory for Alzheimer's so I can't give you an answer but there's a lot of work that's going on and needing to be done still but we still need really I think an up-to-date prevalence study in Scotland which we don't have at the moment we use the European figures to give us the best the best outline that we can at the moment but it's it's it's very difficult to pin down and because it's underdiagnosed that that's one of the reasons it's harder to pin down those figures so we need to improve our diagnosis rates in order to be able to improve planning for this for palliative care thank you thank you I've actually got the excellent answers that I wanted thank you Annette thanks convener I wanted to ask about respite care I mean I'm really attached on it in terms of chas just briefly but Maria I know is very familiar with Robert Watson and his What About Us campaign and I mean he makes the point in his petition to the Parliament which you probably know really saying that the majority of adult hospices provide palliative care but no respite and he says you know the importance of respite cannot be underestimated and that the provision of adequate and appropriate respite care shouldn't be seen as an add-on to palliative care but should be an integral part of it I'd be interested in the panel's comments on that to start I'm sure other colleagues will want to join in after me I'm incredibly proud of Robert Watson's achievements in terms of his petition and the parliamentary debate and I was very proud of Parliament that night when Robert's debate was was Robert's issue was debated in terms of respite you're right that it's incredibly important certainly for children through this particular group of young people and there are around 90 young people in chas over the age of 18 who will over the coming years be transition likely to be transitioning into adult services and for some it's about having a place to go for respite so whether that's an adult hospice or another facility and for some young people they want to embrace self-directed support and we'll use that to have a different form of respite so we have been working with every adult hospice in Scotland bearing in mind that respite for these young people is about a choice and where they would wish that to be and so we're working with Marie Curie in Glasgow we've got some focus groups coming up with young people and their families to help us and to help Marie Curie understand what it is that could be provided for young people and we're also working with Lucky House down in North Berwick on a particular test of a breakdown there with our staff working with Lucky House staff with that group of young people to see if that's a possible model so there's a variety of ways in which we're seeking to find respite for this group of young people some of whom are supported by chas but of course this is an increasing number of young people living in our communities with life-shotting conditions when they were diagnosed it was thought that they were likely to die before they reached adulthood but actually with medical advances young people are living very much longer and the numbers are increasing if we look at the numbers in England increasing from I think 19 per 10,000 up to now 35 per 10,000 populations so it's perhaps a significant and hidden need at the moment. Anyone else? Richard, did any of me? Yeah and I think this is a good opportunity to talk about carers as well I mean agree with what you said about respite it's very important but obviously the role of carers in caring for somebody particularly who's terminally ill and at the end of life often goes unrecognised and I know the committee has heard some of this from us through their work on the carers bill but I think it's worth reiterating. A live-in carer is the single most important factor in whether someone is able to die at home which is often what people would prefer and many of those carers do not get the support that they need they often are not identified by statutory services whether that's GPs social care as being carers and they often do not identify themselves as carers they simply see themselves as a family member a loved one a wife or a husband and I think the support that we give carers is really important to ensuring that that good care that the person is getting at home is continued and respite care for carers I think is particularly important and that can be just a few hours to get away and to get some shopping to to have a bit of personal time it can be a bit of support overnight so that they can get some rest and I think that we need to be as part of this inquiry looking at the role that carers play in making sure that good palliative care and good care for people can continue we were talking to carers as part of the development of our own of our own work that I talked about earlier they need support in two two ways they need support to do their job to do the job of caring and that does include palliative support you know kind of palliative care that they're providing you know kind of we talked about social carers providing palliative care informal carers are as well and they also need support to to be themselves to have their own life to maintain their own quality of life we know that care stress and the breakdown of the informal caring relationship is the biggest single factor that precipitates somebody accessing a care home and moving to a care home and so we want people to be able to maintain themselves at home if that's appropriate for them and as far as that's their choice but we want a care home to be seen as a positive choice as well and not something that just happens because of stress and that means that you need to be able to support the carer as well as the person with dementia in terms of respite our carers are after they talk about the need for respite it doesn't take place in a hospice normally if somebody has dementia it's normally a care home at the very end of life as I say somebody's likely to be in a care home anyway so the question is almost the other way round as and making sure that the carer remains involved in terms of providing their care when the person's in a care home but when somebody is at home yes the carer needs respite as Richard says it needs to be flexible it you know kind of it needs to be a Friday afternoon not necessarily a week every six weeks it needs to be a Friday afternoon each week to enable the person to you know the carer to go out and do their thing see their friends you know play football whatever it is they do and it in order for them to be able to maintain their own resilience so so there's an interest for the system if you like in providing respite to in order for the carer to be able to maintain their own resilience in order for them to be able to keep doing that caring role which the system really really relies on so it is really important the other thing that carers of people with dementia say they'd often like is support to be able to do things with their partner or their parent the person they're caring for so it's not respite as such it's not a break from the caring role it's but it's support to be able to go on holiday as a family to be able to have a day out as a family which which is considered alongside respite if you like and can provide the same role and I think it's important that we think about that as well when we're when we're talking about this so it's care so it's respite that can be provided at home it's often care homes that provide it but it it needs to be able to be provided at home in order to be able to adapt to the needs of the person with dementia and the carer there I think is is very important again it's about maintaining continuity if somebody gets confused when they move to a different environment then and might start becoming stressed and exhibiting signs of stress behavior it's important to maintain their security and sense of security so it's important that that respite can be provided at home that's helpful again absolutely I think respite is really important for people but again it's to identify that as early on as possible and again with patients people affected by cancer it's right across the age spectrum so it's been really really innovative in looking at ways that it's not just hospice care it's not just care homes that are providing respite care it's looking at what really is out there what we can do what we can support the support from volunteers looking at programmes like helping matters so to give that patient as Richard identified it might just be a couple of hours every other day or a couple of times a week that people need but again listening to patients and family from Macmillan that's the sort of things that they're telling us they want to identify early on so that it's not becoming just a kind of critical point in their care journey. Mania. Can I come back to the issue you raised around young people and in terms of respite there's a dual purpose in there that it's often mums and dads who are caring for these young people albeit often with a package of care so respite for them is incredibly important so that they can participate in life and socialise with people their own age but for the young people themselves you know who are often dependent on either mum and dad or a carers package you know it's for a young person in their late 20s to have to go to bed when the carers come in sometimes at seven eight o'clock at night or when mum and dad are able to help them to bed that's that's not about us as a society enabling young people who have a life short line condition living their life in the way that they should and have I believe a right to live their life so there's something incredibly important about finding creative and innovative ways to find respite which suits them bringing young people together who have a condition they're able to share experiences socialise together and my goodness go out to the pub together which is what we should be able to support and self directed support can do a bit of that but for some young people they like to have some respite together so there's we need to work together to find ways to do that in terms of using volunteers and we've been testing that in Chaz with children and families at home working alongside volunteering matters especially trained volunteers who can go into people's homes and provide practical support so making beds doing some cleaning perhaps making a meal taking the dog for a walk or one of the important things we're asked to do is to help siblings with homework so making sure those siblings are able to continue to participate in learning at school and become those wonderful confident young people that we want and need them to be so there are different ways in which we can offer respite support okay thanks for that is there before Bob would like to come back in but but before you've already been in but I'm in the process of I'm in the process of asking those who have not asked a question if they want to come in and then I'll return to those who have already asked a question nobody Bob and then Dennis is anyone else no okay Dennis then thank you and I know that I know that time is against us a little bit now last last week I was asking Professor Clark in relation to the opportunities presented in the carers bill actually and that that come up a bit today and there's going to be a huge amount of people we hope ultimately going to come into the system in terms of getting carers assessments and young carers statements and there will eventually be guidance in relation to how how that's set out and how it's done consistently and quality and training and all those all those kind of things is there an opportunity there to to be asking the questions during the young carers statement and the carers assessments and whether or not the person doing the assessment or preparing the statement believes that the carers providing a palliative or is likely to be in the near future providing a palliative intervention on behalf of the family f