ountain. Good morning, everyone. Welcome to the 26 meeting the health and sports committee in 2017. I can ask everyone in the room to ensure that their mobile phones are switched to silent is of course acceptable to use mobile phones for social media but do not record or photograph precedence. First item on our agenda is our first evidence session of NHS clinical governance. Welcome Welcome to the committee. Rachael Lennon, policy officer, Down syndrome Scotland, Claire Ogden, head of communications and policy action for ME, Carlin Lockhead, public affairs manager, Sam H, and Derek Young, senior policy officer, Edge Scotland. We have apologies from Tanneth Millar, the campaigns manager of Parkinson's UK. We will move directly to questions. We have an approximate hour for our session this morning. Colin Lennon, are you going to begin? Thanks very much. Good morning to the panel. Thanks very much for coming along to give us evidence. Can I start with a question about the implementation of standards and the issue of variations in care? There is obviously a plethora of clinical standards and guidelines in existence, but some of the written evidence that the committee has received raised concerns about how well those standards and guidelines are being implemented. In your experience, do you think that health professionals demonstrate adequate knowledge of the relevant standards and that patients generally receive the treatment, the guidelines and standards set out that they should? Speaking about mental health in particular, we find that the standards themselves and the guidelines themselves where they exist are generally good, but we do not find that there is widespread or consistent understanding of them or knowledge of them. We did some work a few years ago now with GPs and we asked particularly about the sign guidance on non-pharmaceutical treatment for depression, and around half were not aware of it or were not sure if they were aware of it. We hear that reflected in the experience of the people that we work with. For this particular piece of evidence, we did a survey of more than 300 people. What they talked about was a sense of not feeling clear what they were entitled to, not feeling clear about the systems that were supposed to be in place to protect them, and often of waiting a long time to receive access to treatment. We do not feel like there is widespread awareness and understanding of them, although the guidance itself tends to be good, do we think? I would echo what Carolyn said. The Scottish Good Practice Statement on ME was published in 2010. When we surveyed GPs four years later, two thirds of them said that they were not even aware of it, and of those that did use it, they thought that it was good, but they did not even be aware of it three or four years after it was published. That reflected in the patient experience as well. A lot of them are saying that their GPs in particular do not understand ME and are giving them bad advice that is not helping them. The evidence that I am going to talk about today is based on a report that was published earlier this year. It was basically 400 of our members replying to a survey that we did on healthcare, and that included 200 members with thumb syndrome. The point about the standards, I guess the issue for us is around the screening, the pregnancy screening standards, and I think that is the point that I raised in our submission. They are there. There are guidelines, and although they need to be updated, which is happening just now, the file is not being met all the time. In the cases of expecting parents and new parents who welcome a baby with thumb syndrome, there is actually appalling care in some cases, and the issue between what is on paper and the implementation on the ground. I would agree with the others that standards might exist, but when it comes to applying them, there are serious issues that need to be considered. I echo very similar themes to the previous witnesses. I think that we are getting quite good at writing standards now. We are drawing upon previous evidence and previous iterations of the same standards in many instances. We have had an opportunity to be involved in the consultations around the new standards of care for older people in hospital, which were published in July 2015, and the new overarching national health and care standards, which were published this year. In the case of the former, it is still the case now a couple of years on, that those are not still forming the basis for inspections of older people's hospital services in many instances. With that, we do not have direct evidence that we can point to of health professionals' understanding of the new hospital standards, but, if they are not being used as the basis for inspections, it would be reasonable to assume that they are not a central part of the decision-making processes and the culture that exist within hospitals about those standards and how they are implemented. It is still true that, through our national telephone helpline, we receive calls from older people themselves, from their families, about incidences where they feel firstly that they have not had the sort of care that they would hope for, but also that they do not know what the standards are and how they would go about trying to resolve grievances or raise concerns about how the care that they have received could be improved upon. You guys can obviously run campaigns to raise awareness, and I am just reading that the Parkinson's submission, they highlight the fact that someone with Parkinson's needs to have their medication on time, but they are constantly having to run a campaign on get it on time to raise awareness amongst professionals that that needs to happen and that it is a constant battle for them. You guys can run campaigns, but what do you think needs to happen in the NHS to make sure that those standards are being properly implemented? If I go back to the pregnancy screening standards, we have been invited to the group currently looking at reviewing the standards. One of the issues that I am struggling to come to terms with is that the standards are being issued by Health Improvement Scotland, but as far as I understand, Health Improvement Scotland does not have any power in terms of monitoring or implementing the standards, so it is up to each health board to basically decide on how they do that. I would say that there is an issue around accountability here. Who is then checking what is happening in each health board? In terms of the standards across so many different conditions, does everyone know how many different publications of standards there are? Certainly in mental health you have nice and you have sign guidelines and there are certainly more in nice than there are in sign for mental health. I wouldn't say in mental health that there are so many that it would be unreasonable to expect people to have a sense of them, particularly when it would be quite unlikely that you would need to know about all of them. A lot of them are quite condition-specific. My sense is that it is not an overwhelming number. Is there commonality across the piece and some of the basic standards that it should apply? It is a good question. Broadly, yes. I have never come across anything in a standard that I felt contradicted in something else. In response to your question, convener, there are certainly several that we know of. I couldn't give you a definitive figure, but we would certainly be prepared to follow up in writing how many standards we are aware of and that older people routinely confront in hospital settings. Certainly there are condition-specific ones, as Carolyn mentioned, such as the dementia ones are obvious, but there are also ones about processes that are not condition-specific, such as the food fluid and nutritional standards as well. In response to Colin Smith's question about what needs to happen within the NHS, we made reference in our written submission to the examples of where things have gone very badly wrong. Both of those examples are from England, but they remain pertinent, which are the Mid Staffordshire NHS Foundation and then also the Winterbourne view. Following the Mid Staffordshire, there was the Francis report, which identified several hundred recommendations. In broad terms, where a NHS trust in that case was focusing on processes and on finance rather than on quality of care and patient centredness, that was the critical factor in ensuring that there was not the culture of quality and supported by leadership in order to create that effective change. Written standards on their own, unless they imbu differences of approach and different behaviours and decisions that are made every day, they really do not have the value that we would be looking for. The question is about the number of standards. There is a single nice guideline for ME, and there is also the Scottish good practice statement, as I mentioned, but what we do find is that there are lots of recommendations that are made that do not make it into being a standard. In 2002, there was a short-life working group on ME. In 2007, there was a cross-party group report that identified areas for action. There was a healthcare needs assessment in 2010, and there are lots of elements from all those pieces of work that still have not been put into practice. Colin, have you finished? I suppose that the one final point that I was going to ask is that all your organisation has got a wealth of knowledge on the area, and you will be involved in the publications of guidelines, you will be involved in that process, I think. Are you involved in any work on the implementations of the guidelines? Did the NHS come to you about checking to see whether things are being properly implemented, or have you just got to flag up where you see problems, like Derek did there, for example? There hasn't been any concerted effort to make sure that the professionals that need those guidelines are working with them, the survey that we did of GPs, even those that were aware of the Scottish good practice statement, nearly half of them didn't use it. They know that it's there, but they are not using it. We need to find out why that is. I am interested in the role of the Health and Provency Scotland, and they seem to be the main regulatory body within the NHS. With that in mind, you think that they are sufficiently independent of the NHS and, indeed, the Scottish Government, and they have the powers that are adequate enough to ensure that necessary improvements are taken, and to enforce the guidelines that are adhered to. That is the point that I was making earlier. I can only talk about that, because I have limited knowledge otherwise. The screening standards, as far as I understand, are publishing them and working on them. However, when it comes to monitoring or implementation, as far as I understand, they cannot do anything or they are not being asked to monitor when it comes to implementation. I found that quite troubling. It is a difficult balance to strike in many public service contexts about how independent or how connected you would like your scrutiny body to be. There is a parallel here, not just with the Health and Provency Scotland but with the Care Inspectorate. Obviously, because of integration, those organisations are now working quite closely together. In recent times, the Care Inspectorate has decided to move from being an out-and-out scrutiny body to being one that is also focused equally, if not more so, on driving improvement and supporting improvement. To some extent, that trend is emerging in Healthcare Improvement Scotland. In terms of our direct experience with Healthcare Improvement Scotland, I mentioned before the standards of care for older people in hospital. We were pleased to be able to be part of the project team that helped put that together. I think that the only other third sector body that was involved in that was Alzheimer Scotland. Most of the other people in the room were themselves, people from within the NHS. They were senior doctors, senior nurses and inspectors themselves. We did not have criticisms about the process. We felt that there was an opportunity. Certainly because we were in the room, that was an advantage for us and not every other organisation had that opportunity. An opportunity to take part in a discussion bringing some degree of outside expertise to the process of writing the standards. However, we are not involved in inspections themselves, which are the main route through which he can see and advise the territorial health boards to what extent the standards that have been laid down are actually being implemented in practice. There are other organisations such as the health council, for example, the patient advisory support service, who will have more detailed information about how complaints are processed and how recommendations are taken forward. We have not found the end-pens issue to be a problem in our experience. We just want to ensure that the recommendations that we have made are followed up on. I think that that is fair. In mental health, it is slightly different in that we also have the mental welfare commission, as well as the cave inspectorate, which inspects many services, including many of our own. I am probably slightly more familiar with mental welfare commission reports, which we find are robust and well researched and put together. I do not have a sense of a problem with the independence of those bodies. There are times when we have expressed views about particular processes. For example, there has been a recent change to how reviews of suicides that happen while someone is in contact with mental health services are reported, in terms of less information now being sent from the health board to Health Improvement Scotland. We are looking to explore that a bit. We would like to understand it a bit more. There are areas in which we want to make sure that the process is transparent and robust. In response to your question, I would not highlight a particular concern about independence. Just for clarity, it is not so much about the independence, but the enforcement of the guidelines and the implementation of the guidelines. In that respect, have the HIS got the power to enforce, or do we need a more independent regulatory body? The guidelines are robust, but they are not being implemented. I am just trying to tease out why that would be. Or who should be responsible for implementing them? Currently, it sits at the board level. Is that process adequate? I would say absolutely that it sits at the board level. There is also a role for the professional colleges in upholding standards. In terms of Health Improvement Scotland's particular powers, I have to say that I am not sure in terms of enforcing a clinical standard. I think that that is an issue that is worth exploring, which is what the consequences are if a clinical standard is not met. I do not know that I could be particularly clear on that. I would say also that we do not have an official organisational view, but we are absolutely willing to reflect on that and then submit further evidence to the committee if that would be helpful. Allyson? Some of the most concerning aspects, if I think the submission from yourself, Rachel, were around issues for which there were not even any standards yet. You spoke about there is a case explaining a parent's experience at a vaccination appointment, and also concerns that a mother was faced with a developmental questionnaire and was constantly having to say, no, my child has not reached that stage yet. Those are things for which there do not seem to be any standards or regulation. It is around that question of being treated with dignity and respect. Is that something that we have to look at? Yes. From our point of view, I think it is a massive issue that is currently maybe not acknowledged enough and maybe not addressed, because in terms of the lack of care and support, the lack of dignity and respect, it comes down, in many cases, to poor communications and the use of language and the terminology used by professionals. When a health visitor is referring to a down's baby, it is actually very upsetting for parents, new parents. When someone is going in for surgery with their child, they are obviously already anxious about what is happening to the child. I do not think that they should have to worry about challenging staff on top of it, because the staff might be referring to their son or daughter as the down's child. We believe that there should be something done in terms of the use of language and terminology and the power that words have and the fact that I am afraid that not all staff are using the right language when they are dealing with patients and there is a critical lack of dignity and respect. It starts again very early on when parents are going through the screening process and it goes through all the way. That is an issue that is hugely important and should be looked at. There is a similar issue about being treated with dignity and respect for people with ME, and we outlined that in our submission. Only one in four felt that their healthcare professionals treated them with respect. Whilst there are issues around understanding of ME and GPs perhaps not feeling well equipped to manage the condition appropriately, to say to someone that you do not believe they are ill is not acceptable regardless of what condition they are living with. Does it really matter what condition that is? It is not acceptable. When we surveyed people for this particular response, it is worth noting that the majority felt that staff were courteous and sensitive. Most people said that they felt valued as an individual, so there are some positives there. In the comments that people gave us, they talked about having good experiences with staff. I always think that that is important to say, but 40 per cent felt that they had been treated disrespectfully at some point. When we look at the comments and when we talk to people more widely than just this particular survey, we find that that is particularly the case when people are either finding that they have to really push to get treatment or to get a referral. Some people spoke about feeling like they had been laughed at when they asked for a psychological therapy and had comments made about the length of time they were likely to wait for that. Other people, and we do hear this quite frequently, if there was an instance of self-harm or of attempting suicide, were made to feel that they were wasting staff time, that this was not a serious issue that they were being silly. That is a particular issue where we think that it is an issue about—it is not just language, it is attitude and understanding what the issues are. Although I genuinely think that it is important to highlight that people report good experiences with staff who are respectful and are absolutely trying to do their best, I think that there is a particular problem when we look at a self-harm and suicide. There were two aspects that I thought to Alison Johnstone's question. We do not have specific examples that we can point to where there is a lack of standards, which was one of the points that you referred to. On the broader theme of dignity and respect, which the other witnesses have touched on as well, it has been a major issue that we have been trying to highlight for the last couple of years. It certainly appears in our written evidence. The evidence that we get from our helpline is that people who have experienced NHS care for them being treated with dignity and respect are as important as the quality of care that they receive. There is also a very different dynamic at play over those types of questions, because people are not as qualified as medical professionals to understand the nature of their condition, their prognosis, what kind of treatments there are and what are the risk factors. In those elements, they are very reliant on the advice that they get from health professionals, but they are much more in charge of a sense of understanding how they have been made to feel by their health experience, so they should be regarded and treated as experts in that capacity. It is certainly an advantage that I mentioned before recent changes to standards. Dignity and respect now feature specifically in the new hospital standards from 2015, but, as I say, they are not yet forming the basis of enough inspections. It is certainly true that that is a step change for professionals to deal with during an inspection process, because previous standards have been much more functional in nature. They have talked about timings of when people are offered a comprehensive geriatric assessment, when your rehabilitation planning and your discharge planning start. They are much more about specific aspects of the healthcare process. By its nature, it is harder to inspect on how people feel that they have been treated rather than the bits and pieces of the system and how they work. There is a process of change that staff will have to go through to understand how they do that. We have recommended something called the Nolan Senses Framework in our written evidence. That is developed by Professor Mike Nolan in Sheffield. He is a long-standing experienced professor of gerontological nursing. It really is a very useful toolkit. We would like to see better understanding and knowledge of that in health systems. We are ourselves willing to try and promote that. However, if there is better understanding of that, I think that that would lead to what the other witnesses referred to—actual culture change and changes in attitudes and decision making by staff in the NHS rather than relying on the standards in which they may not fully understand how that impacts on their day-to-day work. It seems that there are standards that we need to see introduced when it comes to language and behaviour and how we treat people who have conditions that we perhaps do not fully understand yet because we have not got the research background. Do you have any concerns about barriers within the complaints process? Is there anything that makes it particularly hard for people to access? Do you think that sometimes people are simply put off complaining because their initial experience is just such a negative one? Yes, I think that that is the case. I also think that a lot of people are just struggling to cope with the condition itself and having to complain is a step too far. Symptoms of ME specifically are quite debilitating, including cognitive difficulties and physical limitations. If you only have a limited amount of energy, using it on a complaint might not be the best thing that you need to do for yourself or your family. I think that there are barriers to that. So, there almost needs to be someone there to take that process forward for you? Yes, absolutely. Particularly those who are severely affected—that is one in four people with ME—can be house or bed bound. Sometimes they cannot even be touched by a loved one and those people are desperately in need of advocacy to access the services that they are entitled to. When we did our survey, almost 80 per cent of people did not know about the systems that were in place to detect and to deal with unacceptable care. There is a barrier of people knowing that there is any kind of a system for making complaints. We need to think a lot about how we communicate that to people. People did speak also about the fear of making a complaint and that they would initially have to go to the people or the organisation that they had that bad experience with to raise that complaint. There was a real sense of not having the ability, as you say, while dealing with your illness to take that on. There was a sense coming through in the comments that this was a particular issue for people experiencing mental health issues where your strength really is depleted and you can be struggling just to get through a day to then have to take on making a formal complaint as well with just too much. However, I do think that initial barrier of not knowing about the system in the first place is a big one. I agree that there is an issue around the lack of information. The fact that people might have had concerns that they raised in the past that were not taken seriously, so they just think that was the point in me complaining. I think that a crucial issue is the fact that patients might not be ready to face another challenge on top of everything else. It can be very upsetting to have to relieve the situation that they would like to complain about. So one of the point I would like to make is that there is something to be said, I think, for organisations like ours to be consulted, maybe be taken more seriously, because yes, you might have a complaint system in place, but the fact is that I think there are many people in our case who have had bad experiences but have never complained about it. We have experience through our helpline, not just instances of people feeling that they are dissuaded from complaining but also people limiting their own desire to complain when approaching issues of the NHS. That is partly because they perceive that the professionals working in the system are dedicated their skill, their well-meaning, but they are facing system pressures. In the sense that people do not want to feel they want to add to that burden that professionals are facing by complaining on top of it. It is also true that there are different complaints processes for each of the territorial health boards and then also for the state hospital, for the Golden Jubilee hospital, for NHS 24 and for the ambulance service. It is possible if you have had a consistent difficulty over many different instances. You might have difficulties with NHS 24, the ambulance service and then difficulties with a particular health board. You would not want to have to make three different complaints under different processes and then if they did not lead to a resolution that you liked to then have to take it to the Scottish Public Services Ombudsman in terms of escalation. What we repeatedly hear is that people dislike having to tell their story again and again. There may be something in the idea that we should look at the way that complaints are. The structure and architecture of complaints handling is dealt with in the NHS. That being said, it is also important to point out, as Carolyn has also said, that the vast majority of people report good experiences with their healthcare. There is another organisation that is a service run through Citizen Advice Scotland, called the Patient Advisory and Support Service. I do not know if that has come out in your previous evidence, but our helpline advisers refer people to the Patient Advisory and Support Service because they are able to do some of the work of advising people throughout the course of a complaints process and then potentially a review by the SPSO as well. Having someone that you know who is consistent and you are sure and you can trust is on your side actually does notably improve people's mood, particularly if they feel vulnerable, particularly if they are suffering with communication or cognitive difficulties where they just feel that the system is much larger and more powerful than it is. What then should be done to improve the system when things go wrong? Thankfully, it is a low number of people compared to the vast number of people who get a good service, but what kind of changes need to be made in order to make the system better? I do not know if that was directed to me, convener, but I will respond to the opportunity. I think that there must be some opportunity for greater consistency in complaints, or at least if I could not wish to rewrite more standards for the sake of it, but standards about how complaints are dealt with or principles that are applied consistently by all of the boards. What would also help is if there was greater understanding and awareness of what happens when complaints are made. One of the prime motivators for people to pursue things and be dogged and persistent that they might have to be when pursuing a complaint is the sense that it will lead to real change, maybe in your instance, but maybe also for others who come after you, who are facing similar clinical issues. I agree, and I would think that a really important area to focus on is making sure that people know that they can make a complaint and how they can make a complaint. As Derek said, what will happen when you make a complaint? There is something about looking at somebody's whole journey. What are the opportunities? What are the touch points where they can be told about their rights, not just in making a complaint, but their rights more generally? Everyone with a mental health problem in Scotland has a right to advocacy. That is not well understood, that is not well known, and if that was well known, and perhaps if advocacy was better funded, that is a slightly different point, that would help with quite a number of these issues, because advocacy can be a great way of either resolving an issue before it gets to the point where you have to make a complaint or of supporting someone through that process. For me, a fundamental issue is that people need to know what their rights are. Do people know what advocacy is? I do not know. If there is a lack of awareness of the right to advocacy, it probably follows that there is a lack of understanding of what it is. Any other comments on that? I would like to make the point that complaints, although really valuable, and they should absolutely be a proper practice in place for that, must not be the only time that patients who use experiences are shared, they should be involved right from the beginning of service delivery in the planning stages and leading what those services should look like, which will probably ultimately lead to less complaints. Do we need a standardised, centralised complaint system that is the same across the board, or is it too simple to see that, too simplistic to see that? I would agree that anything that is standardised is actually quite helpful. Even for, in our case, if you think about the family support service, we have got four officers supporting families across Scotland. At 12 o'clock one day, they can be in one local authority, so it will be one complaint system. Three o'clock is a different process. Even in terms of the workforce, and people having to actually advise the family, it can be very tricky if you need to remember all the different systems. One standardised system might be good, but otherwise I would just repeat the point I was making earlier, that I think there is something to be said for organisations like ours and maybe the evidence we have through our family support service to be better used maybe, so let's maybe some work we can do as an organisation for the NHS as well maybe to consult with us a bit more and ask us whether the service is working or not, and maybe we'll have evidence that could help to improve, because I just don't think that every family will complain all the time. Tom, could you just clarify between standardised, which would be a standard set of procedures within each health board and other bodies, centralised being something distinct, which is an independent, centralised system? Can you just clarify the difference between them and what you said? You mentioned a standardised procedure, but would you suggest a standardised procedure or a centralised procedure? I think that I would mean the same procedure. Implemented by each body, but standardised and consistent? Yay, just to make it easier. Could I briefly suggest that there may also be an intermediate route, which is that there was consistency in standardised processes, but that there was a single initial place to which I can completely be referred, which would then be directed towards the appropriate board to deal with? It's an accessible portal such. A sort of one-stop-shop type idea. That might be an alternative as well. Rachel, you said there about they should speak to your organisation. What? Presumably, your organisation and the other organisations don't sit back and wait to be spoken to. You speak up yourself in your lobby and you submit to consultations, you do all the other stuff. I just wanted to be clear that you're not sitting back waiting to be spoken to. No, what I mean is that we're still a small charity, I think, compared to others. We can make written submissions, but I think it's important to recognise that smaller charities might also have some knowledge that could be useful. Yes, we can try and contact organisations, but it can be quite difficult sometimes to find out who is leading on what and who is responsible on what. In terms of resources for us, it can be very time consuming as well to find out where to go to have the most impact. In the past 12 months, I think as far as we concerned, there's been some change somehow. We've been invited to take part in the review of the pregnancy screening, for example, which is a very big step for us. Today is the first time we give evidence to a committee in Parliament. Again, that's a significant step. Maybe there should be more interactions with people within the NHS, maybe contacting us, because sometimes it can be difficult for us to figure out who is the best person. We're very pleased to see you. I thank the panel for spending the time to come along to see us this morning. I wanted to pick up a little bit on what Claire Ogden was talking about, about patient and service user involvement in services and service development. All of the NHS and IGI be the responses to the committee stated that service user involvement was a key goal, but the responses from patient representatives somewhat differed to their evidence. A number of the submissions criticise the NHS's approach to involving people in development services. Action for ME said that about 84 per cent of patients had never been asked about their experience of service compared to 5 per cent who were always asked. Age Scotland said that there was little evidence that involvement is routinely and systematically happening at the planning level. How can patient involvement in service development be improved? There needs to be a real understanding of what the patient needs are and how they might be involved at that level. It sometimes comes down to accessibility. People with ME are not going to be able to make frequent meetings in a place far away from their house that lasts for hours, so just by improving ways that people can share their views and experiences in a way that works for them would really make a difference. I think that there are two different aspects of that kind of involvement. There is the strategic level involvement. What kind of services do you need? What do you want to see? Certainly our survey showed that almost 80 per cent of people had never been asked what kind of NHS mental health services they want to see. There is also the more individual day-to-day being involved in your own care. Again, we looked at a mental welfare commission report primarily this year on acute admissions wards and found that the out-of-four care plans were not sufficiently person-centred. There is an issue there about individual care being based on an understanding of what people need and want and think and feel. I would agree that we need to think about on that more strategic level the actual mechanisms. How do we involve people? Often things are done online. We do surveys online ourselves. It is a good way of getting information, but we have to not rely on that solely. The people that we work with often tell us that they are not confident with technology. They would not fill in an online survey. They would want someone to go and speak to them or at least have the opportunity to give their opinion via perhaps a service they already use or some way in which they are not being asked to just sit down in front of a computer or, as you say, go to a meeting miles away that will go on for hours without anyone there to support them. We need to think about having a broad range of ways that people can feed in it and making sure that it is not the same people all the time, that the process is actually accessible to people more broadly. I would say that it is also just as important to make sure that the individual care that people get is focused on not just giving them something, doing something to them, but that it is based on the input that they can bring and their own particular experiences and what they want. The guidance makes it clear that that is what should happen, but the evidence suggests that it does not always happen. Can I very briefly echo some of the themes that Carolyn has pointed to? I think that it is predominantly the role of the Scottish Health Council to represent patients in their interaction with NHS. There certainly was a programme in the last couple of years—I think that it is called Stronger Voice, I am not entirely sure if that is right or if it is not, I will correct it later—to try and improve the channels by which patients can reflect on their experience and help boards better understand that. Equally, it is unlikely to get individual patients who want to get involved in decisions about planning of services beyond their own experience. That is where organisations like our own start to get involved and where we contribute towards discussions about standards and enforcement and so on. However, it is at the individual level where people will really feel the greatest impact, whether they have been personally involved in decisions about their own care. I can understand from people with mental health challenges that that is a particularly sharp focus. It is equally true for people who have cognitive difficulties or communication difficulties, where it is perceived that it is more difficult to get people involved in discussions and giving consent to treatment. We are pleased that the standards that now exist place far more emphasis on that, but it is still a very tricky area and one that requires a lot of good professional judgment-sensitive treatment to be able to assess people's capacity. However, at the same time, that comes under great pressure—the more pressure that staff in hospital wards are under, for example. That is an on-going area of interest and an issue for us. The supplementary question is specifically about your evidence. NHS Fife will know that it is one of the five health boards across the country who have not yet met the CAMHS waiting target. On that patient involvement, which Clare Hoy alluded to, we have heard previously from vulnerable groups—for example, young people falling through the gaps, particularly in terms of their mental health and their care provision. Do you think that there is a geographic inequality in patient involvement or some areas better than others? I think that you mentioned the CAMHS stats. They show very clearly that there is geographic inequality in terms of how quickly people are treated. We know that eight of the boards are currently meeting the CAMHS stats, so there is clear evidence there. It is the same for psychological therapies. We have statistics that come out quarterly that show very varying levels of people being treated within those timescales. Obviously, we would argue that a waiting time is only one part of access to a service. The quality of care that you get when you get seen and the outcome, which is rarely measured in any kind of meaningful strategic level, is equally as important. Looking more broadly, it would be hard to evidence a disparity of care where you do not have those robust statistics, but we certainly hear from people that they feel that they wait longer than they expect to, longer than they feel is reasonable. Looking at the survey that we did, we had a smallish number, but we had quite broad representation from across the country. I would struggle, to be honest, to pick out one particular area that it looked like people were having a worst time. What we hear is across the board that there are experiences of waiting too long, of having to push really hard to get a referral to get treatment and of feeling like, I suppose, particularly again, I could not break it down for you geographically, but something that came back quite often was people talking about seeing a locum when they were not expecting to starting a course of treatment with someone and then that person went on sick leave or mat leave or in some other reason was not there anymore. There is a point about consistency of people, which in mental health is really important to build up that trust and rapport. I suspect that it probably is geographically disparate, but I would not be able to point you to a source of evidence to say beyond those stats that you mentioned. Thanks for the answer to my question as well. I am not really hearing what a remedy is. I am hearing lots of barriers and lots of concerns about people's ability to drive service change or input into service change. How do we get that patient voice heard so that we are actually developing services that are patient-centred and are what the public wants? I would go back to that. We have to find methods of doing that that are accessible to people, so that are not based particularly on a 9 to 5 working day for someone sitting at a desk, based on what is realistic to people. We have to find a way to convey to people that that input is valued. I think that people do not always feel that they are consulted or they are not consulted, but they do not quite see the impact of it. I think that it is something about making sure that, where people have been consulted, there is feedback that they understand what happened as a result of that and what role their feedback and input played. I am not sure that that always happens. I think that letting people know that the result of their having taken part and being listened to is really important. I would suggest that inspection at the moment takes account of how service is delivered on the front line. However, there might be an opportunity for inspection to look more closely at how patient involvement and feedback happens at board level and how it is treated, and for that to become a significant element of the reporting on inspections when they happen, rather than of individual hospitals but of board performance. There is no doubt that the inspection regime provides a dynamic that forces the boards to articulate and justify what actions they have taken. If that were to apply on an equivalent basis towards management and leadership, which is a critical element of trying to drive performance improvement overall, that might have some of the effect that you are looking for. It is not just the ability of people or the confidence of people to feel that they have an opportunity to put their views across, but what is done with those views once they are received? We currently have a situation where on the integrated joint boards there is a patient representative who sits at that board level. We have heard, as a committee, evidence from some of those representatives about the difficulties and challenges that they face in that role, so I guess that I would be interested to hear if you have had any examples of good or bad of how that role is developing within the IJB boards. Derek, you mentioned the Scottish Health Council of any of the organisations here submitted any contribution to their review, their undergone review at the moment of the role. Do you have conversations with them about the patient voice and how the patient voice is heard and the problems within the system, how that can be made better? Or do they come to you and ask your review? The main route through which we have had those discussions has been part of the standards of views that I referred to. They were involved in the standards of views for older people and then also the new national health and care standards as well. Because we do not offer support to people for their individual cases through our helpline, part of our role is just to help inform people where their options are and then signpost them appropriately. It certainly seems like there is more opportunity for us to get involved in that and we will certainly look at the review that you mentioned. I also referred to the patient advisory and support service, which is still located in the third sector within the Citizens Advice Bureau. The feedback that we have from people who have used that is that that is very positive in terms of people pursuing their own complaints. It is a fair point about whether the systems-wide involvement is working as effectively as it might be and we will certainly reflect on that. I would be surprised if, for example, the main organisation for older people in Scotland and the main organisation for mental health in Scotland are not speaking to them about what they should be doing in relation to this agenda. I would certainly hope that that would happen. We did also participate in the stronger voice exercise that I referred to before. As I said, there are opportunities for us to improve that level of engagement. A small corollary to the question from the convener is that, in terms of the Scottish Health Council, we met with the Scottish Health Council last year and invited them to a number of evidence sessions. Can the panel give us your view on the relative independence of the SHC, its efficacy in representing a patient voice, considering that when they consult on service redesign, they act on the advice of Government officials as to whether something is a major service redesign or a minor service redesign. Only consult on the major ones, even though patients may have a differing view as to whether that service redesign requires their input. Patient services to be redesigned are people with ME in Scotland. It is very hard for us to answer that question. One of the three services is a single individual and that is all there is in terms of specialist provision. Anyone else on that? I would just say that, because I have announced to your question, convener, that we have had a limited direct involvement with the Health Council, it is hard to know. On the face of it, that sounds as if it could be a real problem for people if they fall on the wrong side of that distinction or for services that would be regarded as minor according to official advice. Can I move the question on to the issue of service redesign and the impact on the groups that you represent? It seems to me that, obviously, service redesign is naturally quality led, but with a rigorous application of equality framework, there is sometimes attention with unintended consequences on communities, particularly as Jenny Garouf, I think, quite elegantly used the phrase of geographic inequality, that sometimes if we, by the very nature that we, will require surgeons or specialists to carry out a certain number of procedures in order to retain their accreditation, that then leads to service redesign. Particularly, I think, in procedures around hip, sneeze and eyes. We have also seen the cleft relocation from Edinburgh royal to Glasgow, even though patient outcomes were better in ERI. Are you aware of the impact on the groups that you represent of that kind of migration of services towards the centre because of this structure? I would say that any service redesign can be difficult, can be distressing, I think that it is improved when there is clear communication and discussion. It is much more difficult where people feel something is just happening to them and they do not know why or particularly what. I suppose that, in mental health, the policy direction of travel is the other direction, really. We have seen for a number of years a commitment at government level to move from more hospital-based to community-based treatment, which is a direction of travel that we support, as long as it is properly resourced. That is what we need to see as some actual shifting of resource from the acute sector to the community centre. I do not know that that applies quite so much for our sector. I would imagine not so much in the field of mental health. On that, if I may, convener, in terms of community resourcing for mental health, we know that one in four doctors' appointments will be because of an underlying mental health condition. Are you content that the Scottish Government's efforts to put link workers in surgeries will be sufficient to meet that demand, even though those link workers are not necessarily trained as councillors or can offer talking therapies? We are very supportive of the link worker movement, but we have to have an awareness of what it is and what it is not. In some areas, link workers are specialists in mental health. In some areas, you have a generic link worker service, so they will discuss any area of health and their job is to be sufficiently rooted in the community, to be able to direct you to an asset in the community for anything. We think that link workers are a really good initiative. We are very supportive of them. Indeed, we have a link worker service ourselves. As with any service, we have to be aware of what it is and what it is not and what its limitations are. Link workers can be really effective at giving people more time and more space to talk through the issues than a GP would be able to go along with them a little bit more. For example, if there is a suggestion that physical activity would benefit them, they can facilitate an introduction to a local service. They may even be able to go along on the first appointment, so they can be really effective, but in and of themselves, they are not sufficient as a mental health service. We need much more, too. Is there a concern that the link workers might establish with the patient that a certain intervention is required, but that intervention just is not available in their locality? The job of a link worker generally is to know what is available in their locality and to refer to that. I think that that is largely unlikely to happen. In fact, in some areas, they can drive improvement. We have a service that is not formally a link worker service but is similar and in reclide. Indeed, it has driven improvement. There are now college courses that are specifically designed for people with mental health problems. Those did not previously exist, and it is because a gap was identified. There is also the potential for gaps to be identified and filled through the link worker activity. I wanted to move the conversation and thank you for your submissions this morning to families of individual people who are trying to access care and how they are treated and how they are listened to or not. We have taken evidence from a number of people who have, especially for younger people, when they have been trying to support them, have tried to raise complaints and have been pushed back in the culture around the family and supporting an individual. I wondered in terms of your experience, how you found people's families have been listened to or not? In terms of the families, what came out in our report was the fact that we come in no surprise, but a lot of parents are describing themselves as fighters. From the moment your baby is born with Down syndrome, in many cases you have to fight for everything from education and healthcare. The point that we are making is that it should not be like that. You should not have to fight or have the feeling that you are actually competing with professionals when it comes to healthcare. That is one of the points that we will be making. It goes back to the point that we are making at the beginning about the issue of lack of dignity and respect. We heard from parents who are saying that their concerns are not being listened to. Our family support service is also reporting about parents making a complaint. Those parents are being described as being difficult or emotional by healthcare professionals. I think that is strong as well. There is a lot around the support for families and actually listening to them. Many of them will have good experience, but the fact is that a lot is well done. There is also an issue around the provision of information. What came out in our report, for example, was the issues on the provision of annual health checks for adults with Down syndrome. For example, 50 per cent of the carers of adults did not know about their community health checks. It is about providing that information at the right time to families so that they can make the choices that they want to make. A huge number of people with ME are cared for by family members. It is extremely difficult to get social care provision for yourself. If you have got ME, you have to be extremely severely affected and even then it is tough to get. The parents of children with ME would describe themselves as fighters in a recent survey. This was of families mostly in England, but we have no reason to think that it is not happening across the UK. One in five families of children with ME were being subject to child protection referrals and most of them do not go anywhere. The reason they are happening is because things that would normally be a red flag, such as not sending your child to school and not letting them see their friends, are normal for ME, but because people do not understand that, families are being threatened with child protection referrals and that is extremely concerning. That is putting a lot of pressure on people who are already under a great strain. A slightly different angle on that. I have talked to parents before of young people who were severely ill and suicidal. They have spoken of their son or daughter being discharged into their care. With very little support or even guidance provided on how to keep them safe, that is a terrifying experience for a parent, to feel that you have that responsibility and you do not feel that you have the support or the backing. Of course they absolutely try and they want to do their best, but it is something that I have heard from more than one parent. I was going to note that in our case it is not mostly the parents of people receiving health treatment who are the family member concerned, but it is very often the children. It is anecdotal evidence, but it is a collection of anecdotal evidence that most of the calls to our helpline about health services are very often from the children of people who are in patients in hospital and who are struggling to get information and then to have a productive interaction with hospital staff because they have far less time to be able to engage with hospital staff. On a related issue, I think that I would say that there are also difficulties where an older patient is suffering communication or cognitive challenges because then it will be very often be their child, even a grown-up adult, who is used to advocating and organising personal things on their behalf. However, their status as a next-of-kin only comes into play at certain points in a health process. If there are severe cognitive challenges, they may already have a power of attorney or have a welfare power of attorney or have a guardianship order under the Alex Whim Capacity Act. What we have reported to us is that sometimes there is very pure understanding of those particular frameworks and how powers of attorney and guardianship orders operate. Sometimes that is to do with the fact that staff do not get a lot of time or support to be able to do training on adults with incapacity issues. A lot of people have learned it through an e-learning module and are not provided with separate time as part of their working time to be able to complete that. It is done to be done and seemed to be done, but there is not a lot of evidence certainly from what we get that there is widespread understanding of how that would impact on day-to-day care and that will obviously impact on how those family members interact with the professionals. I think that there is a culture of trying to discourage or limit complaints from families within the NHS, given what you said this morning. I do not have enough evidence to say that there is a culture of that, but there are certainly enough indications of it that that is worrying for us. Anyone else want to comment on that? If you cannot comment, it is fine. Ivan, final question. My question neatly dovetails on Miles Briggs's last comment. What I was going to ask you about was process improvement, which is separate from the complaints process, if you like. If people have a bad experience, they will go through a complaints process, but very often they will get a situation where people, either because of the care they have experienced or what they have seen through the process, will say that if they did that, that would be better. We get people saying that quite a lot about it. I do not want to make a complaint, but you can make an improvement here. Why do you keep giving me medicines that I do not need to be thrown in the bin? Why is the food coming at the wrong time and all this waste? Why is there x, y, z? There are lots of examples of that. I suppose that I just wanted to get your reflection on whether you feel that the health services deal with that well, or is there a culture that, as soon as anybody says anything, they assume that it becomes very defensive, and it is all about how do we stop this person's sayings and how do we get them into this process where we can kind of deal with it in that sense? Because a mature organisation looks for opportunities for improvement, do you have a sense that the health service does that, or is it too defensive in that regard? I would say that we do not see much evidence of that. I think that people with ME really often do not feel hurt by the health professionals that they go and say, but there are some really fantastic health professionals out there, and I do not want you to think that I am saying that there is not. I think that because of the stigma that is still attached around the illness and a lack of understanding and awareness about its impact, not just in health but across really core services, then that adds to the culture of those people not being listened to. I would say that there has been a very serious event such as a suicide or an attempted suicide. We do hear from people that things start to feel very defensive in terms of what you were asking about, which I think is about more kind of on-going feedback and perhaps more minor. It can be a whole range from minor to major. I would not say that I hear much about people being defensive. What I would say is, and this is a personal view, rather than a source of evidence, but I wonder if there are the channels to ensure that that kind of quite informal feedback that is not fed through a process actually gets to where it needs to go. I think that that might be where I would have a concern. Similarly, I do not have specific evidence that I can point to about to what extent there is a defensive reaction amongst health boards. I wonder if you think about this in human terms. If there is this sort of low-level, small, minor suggestions about improvement, if they are then acted upon, it never forms a complaint. That might not be formally documented within the system. The difficulty from the health professionals' point of view is that we are not evidencing success very well. If that were true and if that were documented and highlighted for the benefit of staff, that might help to shift some of the attitudes that staff have towards the complaints process and whether it is seen as a real opportunity to highlight and drive service improvement rather than just have a very external accountability-focused process. Where complaints system are dealt with in the terms of an opportunity rather than a difficulty or a challenge, that is a real driver for service improvement and that is not just within health service, that is seen in other areas of public service too. I agree with the point that was made before. It is about the process and how do you capture those stories if it is not a proper complaint. One of my concerns would be if we look at people with Down syndrome, a service might not see many people with Down syndrome, so if you have two people telling you, two adults telling you, I would like more time to speak to the doctor, for example, if it is two out of a thousand, would that be taken into account or would that just be, well, it is just two people, so we might just stick to what we do. That is one of the questions that I would have, I would imagine. We are out of time. I thank you very much for coming along this morning, I am much appreciated and the committee will now go into private session.