 I will try that again. Welcome to the 36th meeting of the Health, Social Care and Support Committee in 2022. I am delighted to be holding our first external formal meeting of the session in Glasgow today. We are in the Quarader Centre in Govan. I have received apologies from David Tollans for today's meeting and James Dornan will be substituting for him. Three of our members are joining us virtually. We have Tess White, Sandesh Gauhani and James Dornan, three additional members and Carol Mawkin. The rest of us are here in person and it is great to be here. The first item on our agenda today is further consideration of the National Care Service Scotland Bill. We have two evidence sessions and two panels. I will welcome our first panel. We have Claire Gallaghert, who is the human rights officer for the council of ethnic minority voluntary sector organisations in Scotland. We have Hannah Tweed, the senior policy officer for health and social care alliance Scotland, or the alliance. We have John Williamson, the chief executive of shared care Scotland. We have Barry Wiley, the chief officer for Highland, third sector interface in TSI Scotland, network and joining us online. We have Karen Sheridan, the chief operating officer for community integrated care Scotland. Welcome to you all. I will hand over to my colleague Sandesh Gauhani for the first question. Sandesh, who looks like he may have frozen. Oh no, Sandesh, can you hear me? I am not sure if Sandesh is hearing me. I will try again. Maybe until Sandesh gets organised what I can do is I can just ask the panel. The bill has arisen largely out of the independent review on adult social care, also known as the Feely report. We have had Derek Feely in front of us to talk about his thoughts on the draft bill in front of us. I would like to ask all of you, your views on whether or not the bill is introduced accurately reflects the recommendations of the review, and if you feel that any key recommendations from the review are missing, and if I may go to Barry first of all, you do not have to operate your microphone that is done for you. Thank you for having us as well today. By and large, we think that it probably is heading in the right direction, but most of the feedback that we have is really concerned about what will be the practical application in the bill. At this stage, generally there is support that it probably is responding to in terms of the adult social care aspects to it from within our membership, but that there are not concerns necessarily about there is a very strong interest in what will that look like in the practical terms as the bill develops in detail. I think that in relation to the community justice side and the children's side, there are probably some questions in terms of where they fit in the absence of something that is equivalent to the free report in connection with those services, if that makes sense. We would have a broadly similar position from within our membership. The phrase that we have been using to summarise has been conditional optimism, in that few would argue with the principles, but the practice and the detail of what is and isn't included in the bill is open to some concern and some questions. More on that, I imagine, as the session continues. What aspects do you think you would like to have seen on the face of the bill that you think are not already there and that maybe can't wait until the co-design process? Two things aren't there at all and that our major areas of concern would be care-charging and eligibility criteria as key things that affect people's access to social care and to appropriate ability to live independently and well. I think that we've heard that again and again that those are really mattering on the ground to people and they're not explicitly engaged with within the bill in its current format. We would also have a range of areas such as it's really welcome that care boards mention engagement with people that we've lived experience. There's nothing in there to ensure that that is a prerequisite in order for decisions to be quarrelled and consultation is not the same thing we would consider as engagement in decision making. So seeing that kind of detail in primary legislation to ensure that those very welcome mentions of human rights-based approaches in the opening section 1, I think that further detail needed at this stage and then the T's and C's in regulation following co-production would be the kind of thing we were looking for. I mean, I can literally run through the full bill but that might take longer. That's very helpful even as a starting point. So I'll go to John next. Yeah, I'm in very similar comments. We're very supportive of the legislation and the development of a national care service. We agree with the intent behind it that we need to improve the quality and consistency of community health and social care services across Scotland, ending the postcode lottery. We also agree that the effective delivery of human rights should be at the core of this new national care service. However, like colleagues, this is framework legislation, so it's actually been quite difficult to engage with our members and stakeholders to discuss in detail how this national care service will actually work in practice. So it's actually quite difficult, I think, and our main constituency are unpaid carers and the people that they support. So it's actually been quite difficult for them to come to a clear view on just how this will work in practice because they don't know how the structures are going to develop, they don't know how the human rights principles will actually be applied in practice, and they don't know how they and the people that they support will be meaningfully engaged in the development of those systems and structures. So I think it's been quite challenging to engage people in that level of detail when we simply don't have that information on the face of the legislation. So I think that the expression that we've heard used is that people are cautiously supportive of the legislation but there's clearly a lot of information yet still to come that they would like to get just more detail of. Okay, thank you very much, Dawn, Claire. Hi, I think I'm much the same in the rest of the panel that it seems to be heading in the right direction but it's the practical part and the practical element that people are struggling with and that we are struggling with to understand what impact it's going to have, how is it going to improve things in adult social care? I think I like the inclusion of human rights, mention of human rights, mention of a human rights-based approach. I think that's a welcome thing to do but what I struggle to see is how that would be impactful in practice when we don't have key human rights principles in the primary legislation so there's no mention of dignity within the legislation and I think that's really important within it and past legislation with Social Security Scotland self-directed support. I think that's a core part of human rights law. It tells us why we have our human rights but not having it in our safety net and our law to have meaningful impact in a human rights-based approach. If we don't have that in our law then it's going to be really, really difficult. That doesn't have to wait for a co-design process to have brought that out because it's already in existing, yes. The other thing, it should be at the very beginning, not retrospective, it should be at the heart and that's why it should be at primary legislation level and not secondary and I think also having mentioning specific human rights what the bill will impact on so private and family life, a terrible, high-staternal standard of mental and physical health, those should all be explicitly referenced in the primary legislation as well. Like previous legislations have done and those legislations I think there's a lot to be learned from, just from the legislation part because they've been recognised around the world as really progressive in terms of human rights implementation legislation so I think that's something that the bill could do just now in the first instance before it goes out to co-design. Okay, thank you very much and I'll go online and ask Karen for her initial reflections on the review and the bill and how they work together or not. Thank you. Broadly we are welcoming the national care service and the bill. I think like others there's some gaps that we would like to see as we go through to the co-design stage, you know principally around how do we involve, make sure everybody's involved in this so that real human voice of people who use services, those who care for them and also for me as a representative from the voluntary sector just now. The bill in its current format we feel is very structural and doesn't include the significant cultural change that will be required for the national care service to be effective. We're really pleased to see the references to human rights, especially in terms of prevention and empowerment for individuals, but how do we work towards that through that co-design stage? I think for us some of the bits we thought it lacks some clarity between the charter and the principles and there wasn't much reference to the importance of self-directed support in the health and social care standards as they currently fit just now. Of course they can all be clarified once we get into that co-design stage. I think probably lastly for us is around the funding and how the national care service would be developed within the financial envelope that was within the financial memorandum as well because it feels exceptionally light for the size of the task that we would have going forward. Broadly support of the direction of the national care service, but we'd like to see more of that cultural-based work that will be required in line with the fairly report that was published. Thank you. That's a really helpful start for us. I think I can bring in Sandesh. Can you hear me now, Sandesh? I can now, yes. Excellent. On you go. Thank you. Much of the panel highlighted a lack of detail. I think we're hearing a little bit of that already from the last question that I heard and if I didn't hear all your answers. I wonder if we could maybe start with Hannah Tweed. If you could maybe highlight any specific areas that the Government needs to come forward on and provide more detail when it comes to the bill itself. I mentioned that the Alliance and our membership were in board agreement that we'd like to see more details on care board representation at primary legislative level to ensure proper participation in decision making. That also threads through a number of other elements. For example, in section 7, with strategic planning by Scottish ministers and by care boards, we would like to see a commitment to more than just public consultation but to co-production, seeing that involvement in decision making again stipulated in primary legislation. That also needs to come alongside wider data collection duties, which are mentioned as something that is, again, very welcome, but there's no obligation to do so. If I can put it in these terms, you don't know what you don't know. If you don't have the details of data collection to evidence things like unmet need and where the gaps are in terms of people not receiving equitable access to social care, which we know some of from pre-existing research, but it's not part of our routine data collection and analysis in terms of an intersectional analysis, so we'd like to see more of that made as a prerequisite. There was also quite a lot of concern around the role of the third and independent sector within the primary legislation. At the moment, please correct me if I'm wrong, my understanding is that the definition of strategic partners is more engaged with local authority delivery and with health and social care partnerships delivery of social care, which, given the really significant role of the third sector and of volunteers within providing health and social care services and support to people, seems like a pretty significant omission particularly in those wider planning processes as a key partner. That's something that in section 8 we would like to see the third and independent sectors mentioned as community planning partners and involved in that process. We've also got questions about the mention of ethical commissioning of independent advocacy. Again, very welcome. Great. Definitions of what that means, we feel, would be really useful to see in primary legislation. I know that social security legislation caused some headaches around that with independent advocacy, but we think that there's learning to be drawn on from that to enable the going back to Gary's point about implementation to when we reach that stage to enable people to go, yep, we understand what is meant by independent advocacy exactly and we understand therefore how to properly resource it and commission it and to ensure it's available to people on the ground. If we have that definition within primary legislation it enables regulation and guidance to be much more robust and therefore the implementation to be much more meaningful and easier, albeit with some sweating from the legal team in the meantime. We also had some concerns about the charter of rights and responsibilities great in terms of putting human rights at the forefront, as with earlier comments. What happens if the principles of that charter aren't met? It's not clear at the moment in the framework bill what gives that teeth, if I can put it bluntly, because if you have rights to deliver them and people don't have regress, that's going to cause problems and I think that that would be contrary to the intentions of the bill and to the intentions of what the national care service is proposing to do. So, again, that's something we would like to see further detail on so that it is really clear how things will be delivered in practice. Now, that doesn't mean the fine teeth and sees, I can see why that relates to regulation. We also had concerns around the care records section in section 36, specifically around citizen access to records, so it is not only health and social care professionals with access to records and control of, and that would again be in line with human rights digital principles. And that's also something, again, we would like to see third sector access to where appropriate and with permission of the individual. Those are some of the sort of key areas. My colleagues will be dipping into quite a lot of that in your specific questions around that. Sandesh, I believe you have one more question before we move on. I do. Thank you. Hannah, thank you for that detail. It's to Don Williamson, and I do want to sort of touch upon vein carers. It's obviously a topic which I'm particularly important, and we need to do a bit more on. But it seems that only 3 per cent of unpaid carers are able to access paid breaks. Why is that, and what are the main barriers to stop carers from accessing these breaks? The 3 per cent figure is a Scottish Government figure, and that's the number of carers who are accessing breaks with the help of statutory support. Obviously, that's an incredibly low figure, given that we know that access to breaks is reported by carers as being fundamentally important to promoting their health and wellbeing. The question is, why is it so little at the moment? It's the big question that we need to gain a much deeper understanding of why that is. I think that what carers report to us is that there simply isn't enough suitable provision available to access at the moment. The report is incredibly complex and bureaucratic. Systems that are needed to be navigated in order to even get to the point where they might be deemed eligible to receive a break from caring. There is, of course, the eligibility criteria that's being applied as well, which is generally set at the point of being at breaking point or in critical need before you're able to receive statutory support in order to be able to access a break. Many carers will tell you that they have never had a discussion with anybody about the fact that they may be entitled to receive a break from caring. That's never been discussed with them, so they don't know that that might be a possibility. There are many reasons, and I think that we'll come on to the topic perhaps later in terms of the right to a break, but our main concern about the meaningful implementation of a right to a break is that it is completely contingent on their being sufficient availability of short breaks provision for carers. Carers will tell us that it's rather meaningless to have a right to a break if there just isn't the range and choice and volume of provision available to them. Thank you very much, convener, and good afternoon to the panel. I think that it was a useful opening in terms of general principles of the bill. We can look at what's actually in the bill in the sense that the bill provides for the transfer of accountability from local authorities to Scottish ministers. I'm keen to start with that concept and ask for your view on that. What are the risks and the benefits therein? If I can, maybe I can start with Mary, if that's possible. We have touched on that with some of our members as part of their response initially. Generally, my impression is that they believe that there would be more transparency if the services were accountable to ministers. I think that that probably stems from a lack of frustration around a lack of transparency at a local level or perceived lack of transparency. Generally speaking, I would say that people seem reasonably open to that as in the pathway of accountability, but there are significant questions around what does the governance look like in general? How would that then have an impact at a local level? What are the structures that were intent on managing that pathway of governance and accountability through? Although there is general support, I think that there are more questions than there appear to be answers from individuals who spoken to. Outside of that, just growing that pathway through, I think that the general impression that we are also getting is that the ministers may be more willing to honour a more equitable partnership of representation from across various carers, users, third sector in a way that is not a simple tick box experience as in that we often get invited to attend meetings, but our ability to influence policy or decision making is very limited. The only instance that I can recall where we have ever had the direct ability to approve budgetary spend was in reshaping to care for older people about eight or nine years ago, where the spend could not be done until a third sector signed that off. I think that, by and large, there is cautious optimism, as my colleagues have said, a feeling that there is an opportunity for more transparency, but how much of that derives from the bill and how much of that derives from optimism around the concept that change can only possibly make things better, I could not say. I wonder if I can just, from a Highland perspective, was there any sense from the people you consulted with in terms of your membership that things are already, perhaps, feeling further away from communities? Was there a sense that there was a need to bring things closer to communities? I wonder if we tie that to the proposal for care boards. Do people want to see care boards that were more local rather than necessarily being inverness or whatever? That was an area of concern, because there was not enough information in the bill on what could be potentially meant by the geography of a care board. That came up, as I am sure you are very much aware. Highland is the equivalent size of Belgium, so the concept that there is a homogenous Highland view is often misleading. In actual fact, people would be really welcoming of the idea of having much more local care boards that were ansible to ministerial arrangement, rather than necessarily seeing themselves as opposed to seeing the care board sat at a regional level. The biggest concern, though, was not so much that it would move, or rather the biggest concern was that it would move to an NHS board level, which in Highland is not necessarily a massive change. It would just see Argyll and Butte, but for some other areas of Scotland, that would be quite a significant change from an accountability perspective. People would be more welcoming of a more local approach. That is one of the reasons that needs to be thought through, because we talk about in the bill about people having equity of service, and we need to talk about equity of outcome. What we get in terms of achieving an outcome might look very different from the activities and actions that need to take place to achieve that outcome, whether you are in Portray or Dumfries. We need that flexibility, so we would be really careful about that, but local would be better. Obviously, we would say that from Highland, though. Hannah, do you want to come in? I will come to Claire, then, Hannah. I think just to build on the transfer of accountability. I think that what it requires is a bit more of assurance about what that is going to look like. From our point of view, we had to start way back at scratch and develop knowledge and understanding of care services. That might sound a bit out of touch with what we are here for today, but I think that the transfer of services is what we have to ensure, whether it be the accountable body, a care board geographically or whatever accountable body it may be, that that design of that board and the way that it delivers service and the design service has to have a human rights-based approach in anti-racism in the heart of it at the very beginning. That means things like having training. We talked about staff culture earlier on, because the organisations that we work with say that it is not going to change their view, because people from ethnic minority communities when we have been engaging them with other areas of social care, such as the older persons strategy, we cannot access the care in the first place because access to translators is not viable. We do not know what we could access care in the first place. Somebody said that they would rather call a third sector organisation that supports them rather than 999 because of the translation barrier. Having that building on that trust, we know that that trust is not there just now within local authorities and it is not there at government level, so this is a really good opportunity to recognise that and address the barriers of trust in institutional racism and make sure that that is at the heart and everything that you do within the new accountable body. I think that what has come through loud and clear hearing from our membership is the need for people who have problems accessing services or problems with the delivery of service, including the workforce, so I am not just talking about people accessing SDS or social care, need to have trust in a system of redress and of raising concerns and complaints, and I am not sure that that consistently happens at the moment across Scotland, quite the contrary, actually. That is partially because we have different systems for people to access support for them to seek information. Some of that is quite opaque, it is difficult to navigate. That causes problems for specific population groups for whom specific examples, my colleague Claire has just highlighted, but others we have heard from people with learning disabilities, although I suspect Andy in the next panel will speak more about that, around how accessible and inclusive the communication is around accountability processes for individuals on the ground and problems with that. Part of me says from an efficiency point of view, if you are approaching accessibility and inclusivity, if that communication is all coming to a centralized body, at least it has been worked up to a suitable standard in one instance, although still wanting to engage with local concerns, as highlighted by Varey. I think that the other thing that is key part of that is working through what does ministerial responsibility mean and how do we ensure that people can maintain trust in that. Things that I would highlight there would be in the event of emergency intervention, which is two thirds of the way through the bill. If that is necessary, is there also a duty there that ministers will have that as time limited as possible? Is there a duty that they will pay due attention to the principles outlined in the charter? I would believe that that would be implicit, but implicit is not the same as explicit in legislation to ensure that there is a real front and centre prioritisation of those accountability structures within any redesign. I want to follow up on that point. Would it be the alliance's contention that something that is essentially in the control of ministers and accountable to Parliament, to 128 of us, that would be more accountable for people than perhaps the local authority? Am I right in terms of that, was your initial response there? I think that we have concerns that we are aware of at the moment that complaint systems involve a bit of marking your own homework, because there isn't the independent distance, so the people to whom you raise concerns may be the people who decide whether your third second organisation gets funding, or there may be the person who decide whether or not your SDS package gets cut next time you have an assessment. That comes with fear, understandably so. If you have a more removed structure or an independent structure where the people are not making direct decisions on things that ministers obviously make decisions on things that affect people's lives, but in a slightly less immediate sense than you're about to lose a third of your SDS budget, there's greater potential there. I think that may also relate to your point about current problems with distrust, with the current system as much than anything else. You are, in that case, being a colleague to the right. By logic, we are probably talking about people who would be seen as gatekeepers in this, with social work, among others, as commissioners. Would it be better for them to sit with a more national body than locally? I do not want to criticise individual social workers, many of whom—the vast majority of whom are working flat out to try to get the best outcomes of out. However, there is real value in an independent body who is ensuring accountability. I think that it would be better to have a bit of a break between the organisation that is ultimately commissioning services, regardless of whether they are within the public sector, private sector or third sector, and the individuals who are delivering the services themselves, including the third sector. When we think about representation from users and carers in third sectors within the decision-making bodies, we have to do that carefully and cleverly. I am not criticising any individual social workers, I would agree with the comments that were made. Realistically, when you are passionate about an area of work that you are undertaking, how is your ability to step back and look at the strategic picture and make a genuine decision about where the best use of the resources to go? We often come against specific views and perspectives of third sector services within those commissioning frameworks that are not necessarily justified, and they are made from individuals who are very much involved in almost a competitive element of the services that they provide through a different route and avenue. They are actively involved in making decisions about what will be commissioned elsewhere within the private sector and third sector, and you cannot imagine that that is done so unbiasedly in any framework. One of the reasons that people are looking for radical change is that the current system is not working, and there is not accountability that people might have expected. We have a situation where we have good national legislation that should be driving forward improvements. A good example of that would be self-directed support legislation, but care and support of people are becoming increasingly frustrated at the fact that we have national legislation but it is not being implemented consistently locally, and there does not seem to be that sort of accountability. You have national legislation developed by Government through Scottish Parliament, but it is the responsibility of local authorities, IGBs, health and social care partnerships to implement it. However, there just does not appear to be that accountability, and there does not seem to be, the carers are feeling frustrated that they do not seem to have any means of redress when their rights or what they might expect to flow from that legislation is not materialising. Part of the frustration here is that people are saying that if the current system is not working, we need to change it. If that is the radical change that we need in order to create that accountability so that we can have rights and exercise those rights, then this is what people would like to see happen. However, it is borne out of frustration that things just are not working for them at the moment and there is not that accountability. I would like to ask my behinder first about the bill that was introduced and the concerns of carers about care home visits. How could you see this section of the bill be amended to address those concerns? Sorry, would you be able to repeat that? I lost you midway through. Yes, no more. Do you believe that the bill has introduced addresses the concerns of carers with regards to care home visits? If not, how would you see this section of the bill be amended to address those concerns? I think that Anne's law is very welcome would be my first statement and I think that there is probably broad agreement across our membership that prioritising people's right to family life, right to live well by saying that that includes viewing residential care homes as homes and so people have everything else you would expect to have as part of your home within that. He's welcome. We think that this section could be more explicit in referencing existing human rights treaties to reinforce that so article 26 habilitation and rehabilitation is the one that springs to mind. In terms of addressing carers concerns, I mean I would I would honestly be inclined to defer to my colleague Don for that given relative specialisms but what we did think was that this is an area where really extensive co-production would be really valuable and essential in terms of seeing that implementation in practice element properly worked up and I think that that's also worth considering in terms of how is the learning from the COVID-19 pandemic being drawn upon to inform the practicalities of that so making sure that that's a key priority within following commissioning processes to ensure that you know systems are in place to enable proper visitation and proper right to family engagement and community engagement. Since you've been you've been mentioned. Yeah sorry about that. I mean certainly supportive of that of this new right. I think family carers are there and complement the care that's provided by care home staff and they provide you know essential social and emotional support complement that care and we just and we know that as carers were denied access to their loved ones due to the pandemic that caused enormous distress and anxiety so I think we are fully supportive of this of this new right. Can we have James Dorman's mic live? James you're gonna have to say that again because your mic wasn't unmuted so if you can again. Given the comments that Hannah made previously then would you agree that this was a good opportunity for to show the benefits of that co-design and co-production after the framework bill has been agreed? I have unlikely to have an objection to co-production so I can definitely see value in that yes. I think the other area where this could also be expanded and perhaps should have answered previous answer is we would also be supporting calls from Chest Heart Stroke Scotland and other colleagues to include in this section or in others a right to rehabilitation as something that aligns very closely specifically around ensuring independent living and in the article 26 of the UN CRPD got that in the right order to further flesh out that section particularly in providing definitions around primary and health care and social care and sort of transitions between the two. I think also just building on the comments about unpaid carers that Don was making. The other thing I've heard through various research projects we've done is the real value where health boards and where care homes do enable say personal assistance people who have been long-term supporters of individuals with an SDS package or SDS arrangements being able to provide support in hospital formats and in residential care particularly in sort of cases of say six weeks rehabilitation from hospital to home via residential care that sort of situation. The real value of having people who understand people's communication needs who understand their preferences what they want you know will and preference where that can be accommodated that has such good outcomes for people it's absolutely in line with existing legislation and I think would be really important to see prioritised through the existing planning it doesn't happen consistently consistently you know we hear a lot of instances where as with family carers personal assistance and care workers are not given that access even when it is the desire of the individual accessing services so ensuring that that right to rehabilitation at all the T's and C's of that they're in are included would be would be most welcome. James, do you think further? No, I'll leave it like that, I'll strike it back in later. I just want to follow up I mean I think it comes comes back to what you're saying about the charter having teeth you know you've already mentioned some other human rights legislation that you think is actually the backdrop for quite a lot of those those rights that went met so again I'm doing that thing I'm making a comment rather than a question but I would just ask for your reflections on that because if there's a ready legislation out there that people haven't felt that their rights have been met then the charter and the national care service bill has to have something in it presumably that allowed people that avenue to question when the rights haven't been met. Hannah? Yes. Yes, I know, I know. I've got to remember sometimes that I'm meant to be asking questions. I'll bring in Barry, he wants to come in Barry. It's really all of our members that we spoke to around us we're very welcoming of that aspect in terms of right to access within care homes but there's a practical side of that when you start to get into remote rural and even islands you know we have individuals who quite frankly can't get to their family using public transport because public transport just doesn't simply it does not go there first and foremost and it certainly doesn't go there and back again the same day. So I think there's an element whereby when we talk about access and that right to family life we've got to understand that the interdependencies within that are far more than simply a question of opening a door and welcoming people in it's actually about allowing people to get from point A to point B in the first place and making that reasonable and affordable and that's one of the biggest aspects particularly when we get into remote rural areas is the practical elements of getting to our loved ones can actually be incredibly significant barriers not just in terms of being able to try and continue that continuity of family life what somebody is in a care setting but also in reference to rehabilitation to and that continuity of care and carers as well is a significant issue. Thank you. I'm going to move on to questions to Emma Harper. Emma Harper, thank you convener and good afternoon everybody. We've touched already Dawn you talked about unpaid carers and how do we support them and this bill actually has information to suggest amendments to the Carer Scotland Act in respect of rights for breaks for carers amending sections 2 to 10 and you were talking about eligibility criteria in the language that is so there's suggestions about changing that as opposed to making it more easier for unpaid carers to obtain or access breaks and some of the language is interesting and it is all very legal language and when you start picking it apart we talk about this in subsection changing the words eligible needs and substituting for relevant needs that meet the local eligibility criteria so it's okay so now we have to think about going back to looking at well what is eligibility criteria and then how do we get breaks for unpaid carers and breaks only to be all and end all because some of the care is so complicated that you actually maybe need one or two registered nurses to be able to be trained to deliver some care that a parent is delivering already so just wondering about your thoughts about the language in the bill to support breaks for carers and then if that language is adequate and then I suppose down the line that's something that we really need to support and help is the work that unpaid carers do needs to really be valued and then how do we get them the best support whether it's respite breaks or that in in the language of the bill as well I'll go to Don first since you are the one that picked that up when Sandesh asked a question okay thank you well thank you for the the question so the bill proposes amendments as you say to the current carers scotland act 2016 to provide rights for assessed carers this includes adult and young carers to have sufficient sufficient breaks from caring and I think the term is sufficient we can talk about that and how that's interpreted and the bill also clarifies as far as our understanding of it the eligibility criteria in determining whether whether this right can be applied or not is removed from those kinds of decisions so we're now taking eligibility criteria out of the determination as to whether our carer has a right to a break or not so that's we see that as a very positive a positive development but in order for that right to be effective and meaningful it has to be clearly defined I think that's the most important thing it has to be understandable and it has to be measurable and so we are concerned about how that term sufficient breaks from caring might be interpreted and I think also in order for it to be deliverable there needs to be sufficient supply of short break services and support locally to meet the needs of all carers who would have this right and again we have some concerns about about that too so in terms of the first point about the interpretation of the term sufficient this lack of a clear definition on the face of the legislation is of real concern to us at the moment clearly having a clear definition of what sufficient actually means will strengthen the position of the right holders of unpaid carers and it will give them a level of accountability and it will provide scrutiny to that term and I think most importantly avoids the potential situation of carers finding themselves in some kind of dispute with local authorities or care boards who will eventually take on responsibility for this about whether they are getting sufficient breaks from caring or not I mean it's sufficient can be looked at in a number of different ways is it sufficient breaks to stop a carer just going over the edge and reaching breaking point or is it sufficient to enable a carer to have good health and wellbeing and to live the best life that they can it could be interpreted in either those ways or something in between so we think it's really important that this is this term is properly defined and I think in the absence of a clear definition there's always the possibility that it becomes a proxy form of eligibility criteria which is what we're trying to avoid and it's what the government has said that they want to take eligibility criteria out of this particular issue and sufficient for one person might not be sufficient for another so it's all very person centred yes to use that word and I suppose breaks might also be a break with the person you're caring for so so does that language need to be in the bill I mean how do we define that or can that be worked upon okay we we know the bill says yeah let's look at sufficiency let's look at non-eligible language let's mean that the overarching framework means that then we can build upon that language and then have the clarifying language that defines what sufficient is and build on that through an approach that is taking the person's views on board is that that would be part of the co-production would it well yes I think you're pointed by personalisation is really key to this is that we have within statutory guidance we have a good sort of definition of what a short break should how it could be defined and this is in the context of the carers act as we have it at the moment but we're still seeing that being inconsistently applied so you know we do encounter situations where carers feel that their outcomes we for a break would best be met by having a break with the cared for person but that's been denied to them because it's felt that that isn't a break from the caring responsibility but it's a break from the person's routine and it provides you know an important way to get away from the this are daily routines of of you know being a carer but with the person that they care for so that would you know should be entirely acceptable and should be should should be entirely acceptable the concern I think at the moment isn't the language as it stands within the bill is that it proposes to amend the Carers Scotland act to ensure that carers get the support that they need to take sufficient breaks from from providing care to the cared for persons and I think we're just a wee bit concerned that what that might suggest is it it sort of excludes the possibility of people you know choosing to have a break together or having a break in any way that they feel is appropriate to meet their their outcomes so that might be too prescriptive in that case bit a language there yeah and because because breaks is it's about young carers caring for other people it's also about older people caring for their spouses it's it's it's huge what happens in health and social out there in social care it is huge but existing legislation self directed support should give people that control and flexibility over how their outcomes should be met and the right of breaks should be reinforcing that okay that personalisation and that choice because carers and the people that they support are in a far better position to know what is the best way or the best means by which they can have their outcomes met okay yeah and I was going to suggest that you know it's obviously carers and breaks is it's it's like three pages of this bill so it's something that we really need to think about and happy to hear any suggestions for improvements i mean the line that don outlined in 3821 is also underlined in our copy in my copy as enabling people to take breaks with family if that is what the deal is appropriate is really important there's also something there about the need for proactive commissioning of services in places where there is just not sufficient provision but i think also there's something about referring back to um the new standard 12 within the standards for good sds around finance and flexibility because i think the language of that really draws out what we are lining there around persons and choices that as long as something meets people's outcomes they should be able to spend relevant money appropriately i mean obviously in line with existing legislation i'm not suggesting otherwise but if the best thing is for a short break for the family to go away grand doesn't shouldn't need to be separate shouldn't need to be on a prescribed list of you can only use these providers shouldn't be tied to um well shared care Scotland does amazing work with with short breaks shouldn't be the only route that's certainly not no criticism of of that provision but to allow that flexibility and to allow it in legislation while also in framing that every carer should have the right to breaks and not and making sure that is not linked to things like carers allowance so we end up with that three percent figure so it's really really clear that this is a universal right just to come back to the second point as well as that clear interpretation so there's no sort of ambiguous language around sufficiency i think it's really important to recognise and cares have told us this repeatedly and i guess most recently at the cares parliament last month is that there is a right to a break is rather meaningless if there are no if there isn't the provision available for people to be able to you know have a break and a lot of that provision is about replacement care so that cares can actually if they choose to have a break apart is that they can they can choose to do that because there is somebody able to come in and substitute for that care or care to go with the person that they care for to have a break so they can have a break together with some extra care in place so the bill itself doesn't even know that the feeling recommended that you know as well as the right to break there should also be that there was also the need to develop a range of options for respite and short breaks it's the bill itself doesn't seem to address or provide any kind of investment strategy for how there we're going to actually you know improve the availability of provision and make sure that the provision is the right provision for carers and i think this is an area that really has been under researched the there is real concern you know within the sector and much of this provision is is being delivered by the third and independent sector that they are really struggling at the moment because of all the sort of known economic pressures cost of living inflationary pressures workforce issues and so on so i think if this right to a break is to be effective and meaningful there is a lot of work that needs to be done to actually understand what is the current status of our short breaks infrastructure at the moment and what needs to be done by way of investment to try and bring things up to a level that this break can actually be can actually be achieved Emma, I just conscious of the fact that Karen wanted to come in but I think it might have been on my previous point around Ann's law but can I just check in with Karen to see if that's a case of whether she's getting anything to add in relation to the questions that you've been asking Karen? Yeah, thank you. It was specifically around Ann's law and it's very brief. I think it's really welcome to see it within the bill but as a provider for independent living and people who live within the sport of living settings we would welcome the extension to recognise those visiting rights for those who don't live in residential settings because through the pandemic we've seen the same restrictions and same inconsistencies being applied to individuals who lived either in their own home or in a shared tendency with somebody else. It is really important, you know, it's so vital for their health and wellbeing to have that same access so we would welcome it being extended beyond a residential care home setting for individuals. Thank you Karen and apologies for not coming to you at the time. I didn't realise that you'd asked to come in. Emma, do you have one final partner I'll need to move on? Yeah, so one of our questions in our briefing paper would be directly about minority ethnic carers as well so I think we need to make sure that the questions are representative of that as well so basically the direct question is about what additional needs and potential barriers should be considered in relation to carers from minority ethnic communities with respect to access to breaks. One of the biggest things that we've come across while doing engagement work around unpaid carers is that that term is not recognisable. People don't see themselves and it's not limited to the ethnic minority communities but it's definitely more prevalent that they don't see themselves as unpaid carers because it's your job to look after a loved one or a close family friend. We had to break that down when we were doing consultation events to say that this means that you are a person who provides care for a child with additional support needs. I think that that's the first step in addressing that barrier so I would agree with the comments that Dawn has made about being explicit in what the right to a break means but also we have to take into consideration that when we're talking about implementation of what a right to a break means we need to take a step back and realise that ethnic minority communities do not access social care as much as other communities because there are a huge barriers with trust. Language barriers is a huge issue. Care homes, care homes is the food culturally appropriate. Do staff speak the right language? Some people say that you can get translators in but at three in the morning when you've had a fall in a care home you don't get a translator. Three-way translation calls are really really difficult and if you're elderly that becomes even more difficult to track what's going on and I think what we found quite profound was that when we were doing one of our engagement sessions around the older person strategy was that a lady who cared for her dad knew that eventually she would require other support because of medical needs which she had no idea where would you even go to get that so I think we have to take a step back and realise that equitable outcomes of groups and society need different support to get to that outcome and one of the big things is really is recognising that ethnic minority communities do not access social care support the exact same way due to things around trust. Language institutional racism within the system but then also workforce workforce diversity is really important so I think all of that needs to be taken into consideration as well to break down those barriers and then allow people to access their right to a break. Thank you. It must move on to our next theme that we want to discuss and that is around data and information sharing. Stephanie Callaghan has questions on that. Thanks very much and just keeping in mind what Claire has said we're now going to talk about an integrated and accessible electronic social care and health record so maybe that's a bit of a mouthful and something we need to be having a wee think on there. I'm very aware as well of the complexities around access, location, ownership etc and my first question is actually for Karen and I'm wondering what she feels are the main benefits of having an electronic social care and health record and I'm also interested in how we make that accessible so for people whether it's learning disabilities and whether it's literacy issues or whether it's English not being their first language as well so Claire might want to come in the back of that as well. Thanks, Karen. Thanks. I think this is one of the things that we would really welcome in terms of the integrated health and care records. In the past all we have experienced real gaps in terms of people's what's their life story so how do you know how to support somebody really well and without their backgrounds or life story that's really difficult today. We've also seen circumstances where there has been deliberate withholding of information to enable you to support somebody well and some of that is around stereotypes and potential stigma that you may not want to support somebody if they have had a complex life or behavioural difficulties so to support somebody really well you need to know all that information you absolutely need that and we recognise that secondary legislation will be required to enable that sharing of information across the different sectors and the different parties that would need that. I think it's a cultural shift that we would need for people to adopt that. The systems that we have just now requires an immense amount of work and time and resource. There's often a lot of duplication of effort where you might have multiple records for an individual and then trying to distill that to make sure that right information gets the right people and you see real inconsistencies in how that's done across different local authority and social work departments as well. We would really welcome the integration of that health and social care record because ultimately by doing that people will be able to be supported better because you'll have full access to their information and it will allow us to help build care support plans that reflects their individual needs, their wishes, their aspirations and generally the outcomes of how do you support somebody to have a really good life and react to citizens within their local communities. In terms of accessibility, that will require quite a lot of work, especially for individuals who might have a learning disability, how do you present that information for them, how do their families get access to that data as well because that's really important. It's one of the things families have told us that they would like to see more involvement, so how do they engage with the care and support of their loved one as well. I think that we would have to do a lot of work within that secondary stage to make sure that it's accessible to individuals and be able to present it in different communication methods and individuals can actually engage with it as well. Overall, it's something that we really welcome. It won't be easy to disseminate and to get a broad agreement across the sector about what that looks like. I think that we would welcome much more conversation in terms of that co-design phase, in terms of how we make sure that we have the right information for individuals but that that can be shared across those multiple platforms that are going to be required. Claire Watt will come in. I agree with Karen. One of the biggest things that comes to your mind when you talk about electronic integrity networks is digital exclusion, which crosscuts lots of communities in Scotland. I think that the important part to overcome that is about empowerment and empowering people to know that they can access it, but not only, by the way, they can access it via this link however it looks like, but how do we access that? I know for some of the organisations that we work with, specifically with elderly ethnic minority people, that simply they're not going to be able to access an electronic device. They don't have access to the equipment, they might not have internet access, they might, if it's not in a language that their designated language that they use, that these are everyday barriers that they face. I think that part of it is thinking about how would I make that better? How do we address the barriers? Sometimes we get stuck into identifying barriers and not thinking about the next step after it. Some of it might be identifying having a nominated person to say that it might not be a relative, it might be your GP, it might be your social worker, it might be somebody who provides you care through a third sector organisation, you would like you to trust them, and I think that trust is the whole part of it. I think that also empowering the families as well who might provide the care, something of unpaid carers or people who provide care, empowering them, not just saying, this is the information that's on here, going into communities and saying, if you want to learn about this, this is the information that's about you, this is how you access it, this is what we mean, this is the kind of information that it's on and I think that's really required. I also think that it would be, I would presume that it would fall within the secretary legislation that we have to empower the people to say, when you're sharing information, for example, across boards, so an NHS board and maybe a care board, I think that we have to empower people to say, is it okay that I share that information? There's obviously certain information that you have to share in terms of safeguarding and risk assessments, but some things people might not want them to share, so I can think of young people maybe that have maybe in the past been involved and had care and support, and when they transitioned to adult services, they might not want something that when they were 12 they had an incident, that then that reflects on when they're trying to get adult care, people then view that and go, oh, that's a bit too much trouble or too much, we don't want to provide care for that person, so I think we have to ask them what information can I share, there's boundaries, we have to respect to keep them safe and staff safe, but really we should be asking people, and not just by a please tick this box, if you're okay, we shouldn't tell people what that really means. Okay, thank you. That can lead me on to my next question for Hannah. I was going to ask, should social care users have ownership of an access to a single integrated electronic care record, and if you think they should, how could that actually work effectively in the ground in practical terms? If I may amend that suggestion, I think it's not just about the electronic record, I think it's about care records, and yes, echoing comments about digital access, any system we design cannot exclude 20 per cent or whatever portion of the population based on digital literacy, but. Created an accessible record, does that all the information is in the one place, but I appreciate that. I just wanted to make that explicit about the access point. Agreed that you don't want a massive paper filing cabinet. I think citizen control should be in primary legislation, so not just access but control, and I think that this is something we've heard from across our membership, so I'm speaking more broadly. Specifically what that means is right to state who has graduated access as outlined by Claire, so maybe your physio needs information on your day-to-day personal care needs, they probably don't need to know you had postnatal depression 20 years ago, that kind of detail, and in practice that also means ensuring in secondary legislation that there is provision made for the training up of individuals to access and control data about themselves, but also to ensure empowerment and training of all sorts of social care people providing social care, including unpaid carers, the third sector, independent providers, local authority health and social care partnership providers. At the moment my understanding of the legislation is there's not explicit engagement with who has the right to access that within the third sector as well, and I think that would be really important to Taylor to ensure that it applies to as board a range of people as the citizen in question is happy to have access. That also needs to include guardianship situations explicitly. Yeah, I support everything that has been said but I do think we need to inject a degree of pragmatism into this and that the individuals who are probably most likely to be disadvantaged by the open sharing of information, the disclosures that they're likely to have made, particularly complex backgrounds with multiple aces—those are all individuals that we see through services that we run—they are the individuals who are least likely to exercise any of the rights that we have discussed, and training quite frankly won't do anything at all. So I think we need to make sure that there are safeguards in place that we don't disenfranchise those who are the most vulnerable to what's potentially being put in place, and that's going to require more than potentially independent advocacy but a real consideration to helping individuals who have become institutionalised potentially from being in care as a young person and as an adult in multiple instances possibly through prison or quite frankly just intensive public sector involvement in their lives who have become a social norm to share everything about themselves. I think that there's a wee bit of thought that needs to be thought through around how we protect those who are most vulnerable in those circumstances. Those who have capacity and agency themselves tend to undertake those absolutely, but not everybody is on the same footing, and that needs to be recognised somewhere. Thank you very much. I move on to questions from Gillian Mackay. What challenges currently face social care users and carers when making complaints? How could those challenges be addressed by the bill and are there any woes in your opinions that you would like to see the complaints handling provisions of the bill altered and or strengthened and for what reasons? You're nodding at me, honey. One of the things that comes back reasonably regularly through forum discussions with service providers and people who support individuals who might be making complaints more often than not is differentiating the difference between the system and the structures and the institution from the individuals in front of them. A lot of the time, they actually feel very protective over the individuals who have direct support, but it's still not okay, as in Nicola Kearra turning up to put somebody to bed well before seven o'clock, six o'clock at night. Their frustration is that to complain would seem as though they are criticising the individual, and it's trying to differentiate between the two. Then there's an element whereby the complaints themselves are being handled and processed. By experience, I would say that many of us will have, I have no doubt, raised concerns about aspects of things that have been happening within the system, and the knee-jerk reaction that I've experienced is defensiveness, not openness and willing to explore. I could give you multiple examples, except for my wooden in a public committee, but I think that there is something about we need more independence in the pathway, more independence in investigating what's actually gone and happened, not as a secondary tier but as a primary tier in the complaints process, and we need to encourage individuals to understand that when something isn't working right, I think that the word complaint is part of the barrier. Actually, I want to raise the fact that I don't like this. Could we change it? Because that's not a complaint then against Sandra, who's come in to come and help me, and I like her. I just don't like what's happening around it. Does that make sense? Hannah? Seconded, and just to build on that, something that explicitly prioritises improvement processes, and I think that that links to your language point, including a system that enables staff to put forward those proposals and those concerns, which isn't always in place consistently at the moment, and I think compounds those issues. Also, that would be part of a co-production approach to enable as many people as possible provide constructive input throughout the life of a system. The other thing that would have flag as an important element of it is that, in many cases, our current complaint system, if someone passes away, that's it, jobs done. It doesn't go any further, and that's a real problem, because it means that with people entirely at the end of life care, you don't have the capacity to follow through on concerns that have been raised within that sort of situation or in situations where someone has passed away while a complaints process is lumbering along, the family don't necessarily have the same right to follow that through, and that's learning lost, bluntly. So any system needs to be flexible enough to accommodate that while we're respecting GDPR and everything else. I agree with Mary and Hannah, and I think, again, just to build on it, that a lot of the time when people complain more than once, even just like Mary said, I don't like this, they get tarnished with you're the complainer, and then their standard of service changes usually to their detriment, and that's a real fear, especially among people who receive self-directed support, is that I'm afraid to say, I don't like this in case then they pull more money away from me, because again, and it's people, one, and the one hand people are afraid that they don't want to complain about the individual providing the care, it's the system they've got a problem with, but on the other hand, it's about it's just the change of the language. We want to complain about the system, but if the system doesn't allow you to complain, there's nowhere else to go, and you become more disenfranchised. One of the other things is that it's really difficult to make a complaint, people don't know where to go, they get sent, phone this number, you get switched on to that number, and it's just not accessible, and I think one of the other things that we need to take into consideration is that when you're making complaints, and information gets shared, you make phone to make a complaint, and a note gets lodged for somebody to follow up, we have to take into consideration things like people's own microaggressions, people's own unconscious bias, institutional racism, because those little notes on little comments can then affect how the next person makes that, so what is there in place to make sure that we are making sure that those who are on the front line of, as well as having the processes in place in the front line receiving the complaints, how aware are they of those issues for people? It was just quickly, I think that this is back to independent advocacy again, and the importance of that. I think that the bill currently states that ministers may bring forward regulations to ensure that people using national care services have access to independent advocacy, but I think that around this sort of issue it's particularly important that people can access that advocacy. My next question was on how we make sure that that complaints process is transparent and accessible for everyone. I think that Claire summed up very well that, at the moment, due to the number of different providers and where and when and to whom you can complain to, it makes it a complete spider's web of issues, especially if you have service users who English is not the first language or if there are any other access issues there. How can we ensure that any national level process takes accountability of geographic variability and who the providers are, as well as access issues to make sure that the complaint system is fit for purpose and is well advertised, how to access and how to navigate through it, so that, if for any reason someone doesn't want to take up independent advocacy or doesn't have someone there to advocate for them, they can still navigate it in their own way and in their own time? I'll go to Barry Arthur first. I think that to be transparent, if we're in the first instance and we're not going round independent advocacy route, having the information about how we access complaints in easy rate, having them in different languages, having them available, but there's also something to be said about breaking down those barriers. Some people feel that I should be grateful enough that I get anything, so to complain, especially among elderly people, seems like they don't want to complain about things. We've also got this institutionalised feeling of being told for generations that there are burden on the state, so we've seen that with some work that we've done with Social Security Scotland in accessing that, but it's the same for social care. It's changing the mindset that you have the right to this care, but you also have the right to make sure that you like it and maybe frame it like that and not frame it like your complaint, because framing something as a complaint is usually something negative, but it's not personable to usually to the person—sometimes it is—and you want to complain about the person who is delivered that care to you, but we have to break down that barrier of, you know, this is your right to complain in going into communities change. If it's access when you're giving that support, remember that this is available, but not just that. We have to think that people are better placed than me to say that, because people who provide the care and the people who receive the care should be at the heart of that process. I was smiling because you mentioned Social Security Scotland. In relation to how we get the balance right and get our footprint within local communities, I really do think that there's a lot that the committee could learn in terms of how Social Security Scotland is unrolling its engagement process on a local basis, because right now we've asked them to come back a couple of years' time. I'm sure that we will have some complaints by that point in time, but right now everything that they're doing is just really encouraging and we're getting incredible feedback from local areas. So I think that if you're looking at how to take that forward, I would encourage you to look no further than them. That's really good feedback as well for us here. On a connected point, although we've been talking a lot about what isn't working, I think that there also is learning in parts of the country about where complaints are well dealt with. One of my colleagues did a bit of work around assessing what information is available publicly on local authority websites around complaints, and some of them have very clear information on, this is who will contact you, this is the timeline, and even on a very basic level, knowing what your expectations are is helpful. Did they have BSL? Did they have Glasgow City Council of Community Language information? It's not absolutely everything, I'm not, but that is the step in the right direction. I think that comms work is really difficult to understate how important that is. I would also twin that with the need to have proactive working with local community groups who have that built trust, who can address those kinds of concerns that Claire is raising. I think actually just putting the really basics out there is really powerful. That can also be twinned. I know there are some colleagues within social work who have as part of their standard information pack that we give out on every assessment visit to individuals in the community, it's information about your local advocacy organisation, it's information about how do you raise concerns. I think it's that line which is usually the one I'm thinking of in question, but that's good examples of good practice. Not everything is awful, there are plenty of problems, but draw on that and use that to go forward. Paul, you had a question on this. Thank you, convener. When we had the public service ombudsman before us, they would have raised concerns about duplication in processes if we go for a new national complaints procedure. I think that the SSC and the Kinspector would probably say similar things in various spaces. Would the intention be that there would be a requirement to resource a new national complaints service, to spend money on people who handle those complaints at a more national level, to then feed back to whoever is providing the care and do the investigation, if you like? Is that the vision that people have seen through this consultation? I know that Karen Sheridan, through community and community care, had said that there was a concern that taking it out of the local context is maybe not helpful, so I don't know if Karen we've got time to comment on that as well. I maybe go to the in-house panel first, before we go to Karen. No, but that was an independent process through which you could raise a concern, not necessarily a complaint. I suppose that there's two or three things. One is, from my impression from feedback given in relation to the bill from members, that they would prefer an independent process that links straight back to the Government, because that's the avenue at which they would see their ability to hold you to account to some extent. However, on a practical level, there is something about making sure that there is a local aspect to that, and possibly rather than setting up a new service per se, there is an opportunity to commission on a local basis, a concept of independence at first stage that's not necessarily about creating up a new bureaucratic process, if that makes any sense, and looking at examples around PASS might be an option. Could you maybe just re-emphasise what your point was, because you want to ask Karen a particular question that she might not have caught at all? Sure, sure. We were just talking about the complaints system, and I'd noticed that community and community care had said in their submission that that local level is actually quite important in terms of responding to complaints that are as close to where they occur as possible, and paraphrasing, obviously. I wonder if Karen had any comment on the kind of complaints procedure on the importance of that locality. Yeah, I think that when we spoke to some of the people who use our services and their families and carers around the complaints process, there was a real strong feeling that there should still be that localised element of it, so where things can be done very quickly, you know, engaging with their provider, with the local authority, with the care inspectorate in terms of making sure that something, there's something in the conversations, isn't there, when you're making a complaint, you want it to be an easy process, you want to make sure that you're being heard. And there was just a feeling that that happens better when it's somebody local that maybe knows you, knows your family, knows the communities that you're living in as well. I mean, there still needs to be a process, I think, for when somebody wants to challenge a decision as well, and when somebody feels that they haven't been heard, which is where, I think, if there's more serious complaints, it can't be resolved, and there is something in terms of a more nationalised structure. But I think in terms of being for individuals, people might see a local response, you know, certainly to people that we've worked with, but some of the other things that were quite key to them was making sure that they had help and support to make a complaint. And one of the things that I think Donnie Dolman ready touched on is that advocacy, so how do people access advocacy that will help them to do that, and then making sure that it's available in those different accessible formats for individuals? But in terms of local response, there was a clear request that people are still able to raise their concerns locally to get quick and speedy responses to that. We've got 10 minutes left, so we have a final theme. We've talked about co-design quite a lot throughout the whole session, but we have specific questions on co-design from Paul O'Kane and then from Evelyn Speed. Thank you, convener, and thank you to the panel for indulging me again. But essentially co-design is to be at the heart of the process, and obviously we are going to have an element of co-design, as we understand, in the secondary part of the bill, if you like. Can we maybe just start with, do you feel that that was the right way to do it, or would you rather have seen more co-design at the front end before we got to a legislative process? There's a lot to be learned in the co-design processes so far on this bill, in the experiences, and we can take the learning away from that and improve on it, because there's a lot of unhappiness and a lot of exclusions within the co-design process. Co-design should start at the beginning, and it should always be at the start, because then you've got this issue of fitting the people's needs and wants within your own framework. It should never be retrospective. I always say that co-design is like dotting the I's and crossing the T's. You should really have a diverse workforce. You should ensure that in the national care service and the people that are providing support, people with a more strategic approach, people involved in the care boards that are being proposed, there should be a diverse workforce that shouldn't be pulled from the same talent pool that we know that social services is not a diverse workforce. I think that that is something that we really need to take into consideration, because after that co-design is important, and I would never say that it's not, but you then have this issue of trying to meet what came out of the co-design into a process that you've spent lots of time and lots of money on doing. I think that it should be at the first and foremost at the point at the initial stages. I agree with that. I also personally think that co-design should be on the face of the primary legislation as well, because I think that there appears to be quite a disconnect between what is said within the policy memorandum and the sort of language that we're seeing on the face of the bill, which talks about consultation as opposed to co-design. In some cases, it's about consultation after a draft strategy has already been produced, so that doesn't really strike me as being proper co-design. I think that I'd prefer to see that clearly set out within the primary legislation as to what that will actually mean in practice. Hannah, do you want to comment? I think that only to reiterate my point about threading through the legislation ensuring that people are included in decision making, not just in consultation. I think that I've made that point, but flagging it, fair is repeating. Paul, do you have any more questions for Handelford to Evelyn? No, I'll let Evelyn. That wasn't a hint. No, no, no, no, I told it, I told it. Evelyn? Thanks, thanks, convener. I'm keen that we move forward with co-design so that you all feel that you're included, that you've got a say. I think that we've caught the general drift that you don't really know what it looks like just now. I would like to ask Mary for rural and remote areas. How can we make sure that we're inclusive, listening, and you spoke about the challenges earlier in such a huge area? What does good co-design look like for you? Good co-design has to start out on an even footing. Whether that's actually in the development of this piece of legislation or what comes after this in terms of the governance processes, we need to give some serious thought to where does the capacity for the co-design come from. If that means involving individuals who have some form of a barrier to participating in remote and rural areas, that might be transport, but it might actually be transport and the fact that they're an unpaid carer and the fact that they've got a part-time job as well. How do we remove barriers from a social care provider's role? If you're already incredibly short-staffed, how can you possibly travel to Inverness for a piece of work to do that? If you're from the third sector, we're already running on absolute zero capacity to do anything. To participate on an even footing with individuals who might be coming from a committee with a number of clerks and background supports, etc., we're already at a significant disadvantage in terms of how we participate. Truthfully, what we need to see is investment in the capacity of all of the audiences that you want to see participating in co-design. We need to make sure that we're very clear about that sense of we're achieving something. I've participated myself in a number of things, and it's very difficult to identify, particularly when we talk about policy development or pieces of legislation or changing elements of practice or systems change to see and evidence to feel like I have achieved something. Your ability or interest in participating becomes less because you can't see the pathways to how you're making any difference. When you've all those pressures of your normal work life or home life or just circumstances pushing in on that, it becomes really difficult to justify the time, the energy, the travel and the cost. That's often hidden in co-design, the cost to actually go to somewhere, the cost of giving up a piece of work or getting somebody else to cover it. Truthfully, we need to look at resourcing capacity, and I don't think that moving everything to a digital platform is the solution to that. I know. Just also responding, I would say, there's something, there's a lot to be learned from groups like the People-led Policy Panel in terms of the longevity of that and the building of empowering folk to engage, as well as proper financing and resourcing. There's also something about feedback loops that I think is really important, whereas at the moment there is, I know from colleagues in civil service, a huge amount of good work going on, but it's not necessarily fully transparent what has happened, who has been involved, why those individuals have been chosen, and I think that also goes to public trust. I think not asking for anonymity to be breached because that's obviously a GDPR concern and other ethical questions as well, but there is something about public transparency of process and of you said we did sort of logics that I think needs to be part of any process. I think to me what good co-design would look like and what it would feel like would be that you, when you're creating a co-design service for people to get involved, that you use a human rights-based approach. You use the panel principles, which are endorsed by our Scottish Human Rights Commission, or UN endorsed. It's a framework such to take you through a process of making sure that you are as inclusive, you're breaking down those barriers as much as you can, and it's about the importance of using a human rights-based approach as it captures intersectionality, and that can often be left out in co-design. We'll have you because you have a disability and we'll have you because you're from an ethnic minority background, but what about the ethnic minority person who has a disability? In their experience, it's entirely different, so the importance of a human rights-based approach is that it captures intersectionality because it focuses on the human being and not their protected characteristic. I think that other things that it ensures is things that Mary has talked about, about the empowerment, making sure that at every stage of the process that you're being updated on what's happened, so I've collected the information, I've shared it with the committee, this is the action, this is the recommendation, this is how it's been implemented across the whole stage of the process because otherwise people become apathetic and they'll never participate again because they're like, what did that achieve? I gave you, and I might have disclosed some really difficult things about my experience through care, and you've not even told me what it was for, and I think it also comes back to valuing people and valuing their time. We talk a lot about valuing lived experience, but we don't actually value lived experience because a lot of the time we don't value people for their time. We might cover their transport costs to participate, but what if they have to take the day off work? What if they haven't to pay for another family member to get the bus over to look after that person? We need to really, if you're valuing lived experience, you pay for their experience, just like you would pay for somebody else to come into our room and speak. I think that that is a great note to end on, and we could speak to you for a lot longer, but we have run out of time, we've got a second panel to change over, so I'm going to suspend this part of the meeting to allow that panel to change over. I want to thank the five of you for your time this afternoon, it's been very, very helpful. We move to our second evidence session on the national care service bill, and I'm delighted to welcome those 10ing in personal fashion, and I'll mention those that we have online. We've got Frank McKillop, the head of policy and research for Enable Scotland, and we have Andy Miller, the strategic lead for participation and practice lead for the Scottish Commission for People with Learning Disabilities, and online we have Dr Caroline Gould, the trustee and access author of the Skella McCall's access panel, Dr Pauline Nolan, the head of leadership and civic participation for inclusion in Scotland, and Rona Wilder, the development manager for the Scottish Independent Advocacy Alliance. Welcome to you all. If I could maybe just put the first question to you. I do it every time, and I did in the first panel as well about how you feel the bill, as it's drafted, could be strengthened. I'm going to go around everyone, not every colleague will have the luxury of going around everyone because we won't have time, but I'm going to take convener's privilege in that regard just to start things off. I thank the committee for inviting us to participate. I think where we feel there's perhaps something missing and it may be an accident, rather than in purpose, is the reference to self-directed support. That was something that we were quite surprised not to see written into the bill. There are the references to person-centred support, and I think what we often find is that those are interchangeable and wrongly interchangeable terms. We would like to see self-directedness at the heart of the bill. That is particularly important if we are going to achieve human rights of people who access care services, which is rightly and nobly a high priority for the national care service. That is something that we would like to see written into the bill, is that rights to self-directed support. A second priority that we would like to see written in is the community first principle for social care. The priority at all times is to enable people to have support in the community where they want to live. Any institutional or congregate living arrangements would only be something that someone would have as their choice. They are chosen to live with other people or in a particular building-based service. That should always be a community first principle. The learning from the pandemic has led us towards that phase. We know that a number of local authorities are increasingly thinking about having as much care as possible delivered within community settings. That is something that enables support and something that we would like to see in the bill. Thirdly, the other thing that we think would be an important addition to the bill is the principle that care would be free at the point of use. I know that that is something that is in the wider national care service project. That is something that the Scottish Government says that it wants to achieve. However, of course, it is not written into the bill. Whenever we have had members' events to enable with our members to participate, people have learning disabilities themselves, people who have access to care services and their family members and carers, it is always the question that they ask. We can give a beautiful slide presentation about the national care service bill. The first question is always, is care and support going to be free? At the moment, we cannot say that it definitely will. We hope that the direction of travel is towards that, but that is the understanding of national care service, which echoes national health service. That is very deliberate. It is important to remember that, in the minds of people who are not like me, who are involved in all the policy and in the weeds of what is in the bill, when people hear national care service, immediate assumption is that this means that care and support is free when I need it, just like the NHS is. We have to ensure that the legislation gets us to that place to meet those expectations. Thank you, Andy. Thank you for inviting us first of all to this committee this afternoon. I am very pleased to be here. I hope that it is not going to be a very boring afternoon for you, where I just repeat everything that Frank said, but we would very much echo a lot of those points. The lack of reference to self-crit support is a big miss. We did not really understand why it is such an important part of social care work. It is the mechanism by which social care should work well. It was a theme that Derek Peeley really spent a lot of time considering on how that could be put right. That was a bit mystifying. In general, I suppose, the point that we would make about what would make the bill better is that there is a lack of detail. The Peeley report gave people so much optimism and hope about transformation in social care. What was missing from the bill was any detail about how the new structure—which there was a fair amount of detail about—would bring about all those great outcomes that Peeley mentioned. It was not just the outcomes that Peeley talked about. He did talk about some specific things. Again, Frank mentioned them, supporting free-at-the-point-of-care, breaking down of the binary system that eligibility criteria creates, where your assist is being eligible or not. If your assist is not being eligible, you essentially get nothing. Peeley's vision was very much of some kind of spectrum of support, where whatever your needs were for support, you were eligible for that level of need. There is nothing in the bill that shows how that can be brought about. Fundamentally, I suppose, we would say that the principles in the bill are fantastic. We would totally support them, but there is not the detail in the bill about how they are going to be brought about. The big fear that we have is that the focus of the bill is all about the structure of the new service. The way that it was presented, there was a dislocation between those terrific aspirational principles and the structure that was laid out. We were left feeling that, if that structure was put into place, it would not deliver the outcomes that were talked about in Peeley and aspired to in the principles. I am not sure whether that is covered in your question, but we would have to say that what is in the financial memorandum was disappointing and reinforced that fear that what will be delivered by the bill is a structure, but none of the vision that Peeley hoped for. That might be because quite a lot of the detail that you are looking for is going to come after the co-design process. Do you recognise that that is the vehicle? It was very successful in the Social Security Act. Is that co-design going to inform that secondary legislation, or do you feel that there has to be more detail ahead of that co-design? We are really hoping that that will be the case. Clearly, that is what is being promised—the detail will come in the secondary legislation. That is fine. Just in terms of the finance, we are not sure if more finance will come with the secondary legislation, but there were so many big ticket items that were specifically excluded in the financial memorandum, which would be fundamental to the success of the new social care service. That is really helpful. Of course, we have the minister in front of us just before we break for Christmas, so we will be able to put all those questions to him. If I can go to those joining us online, Caroline Gould could come in. Caroline Gould, I would have liked to be there in person today. However, no one seemed to consider to ask my needs as a disabled person who uses a large powered wheelchair and who needs to employ carers and who has an unpaid carer and is also an unpaid carer or of the time required to enable what needs to be put in place to support me, get there and be there and to stay overnight. However, that initially disappoints me completely given what we are here to talk to today. Although I like some of the principles on that, I am also concerned about when we say human rights, what are we referring to? Are we referring to the possible future human rights Scotland Bill or are we talking to current human rights? Where is the United Nations convention on the rights of persons with disabilities coming into this? I feel that, in the processes in which I have been involved through the social covenants hearing group, the people-led policy panel and others, there has been almost a constant fight for disabled people and the disabled people whom I represent and their unpaid carers to be heard in any real way. When we are talking about even going to a stage 2, what is going to happen beforehand? What happened first was that the consultation was formed without disabled people's input and the consultation results proved that that was a mistake. Now, as disabled people, we are almost being asked to run before we can walk to keep up because it is a process that has started and is just going to run over us if we cannot keep up. However, I am not seeing a huge amount being done to allow us to keep up or be on a level playing field with others. I would seriously question whether you really want our views. I am sorry to have to say this. I have to say that the social covenants hearing group and the people-led policy panel have been pleased with the social covenants hearing group is improving. However, a lot of things that people do not necessarily realise. In a remote rural area such as Skynlachalsh, when you pay a carer so much for an hour, you may get them at most for 11 minutes before they have to go and drive another 45 miles to somebody else. All those long distances mean that it is not easy for them to come back because nobody is paying their fuel. I think that person-centred is completely wrong. Person-centred, I am told, should be being centred on the needs of the person who needs care, but in my area and other people in Skynlachalsh, what we find is that person-centred means a load of social workers, integrated team members, in a room, talking about you, which is often overheard. Then you are told in the local supermarket car park what was said about you because your confidentiality is breached. However, at no point are you being told what is discussed about you as the centred person here, the person for whom the decisions are being made. That has to drastically change. Certainly, I would like to see much more in relation to SDS in this bill in reference to it. I am also very concerned about access to notes, particularly in a remote rural area, but particularly because 60 per cent of disabled people are unable to access or use digital technology. Why should they be forced into a method that clearly does not work for them? We have seen that throughout the pandemic, where disabled people tell us that they feel even worse than second-class citizens, which is what they would have called themselves before the pandemic. People with long-term illnesses and their unpaid carers need to be included. It is all too easy, as I discovered recently, to go into hospital to visit my husband to find that he is his wife. Oh, great! That is the unpaid carer. We can send him home now. When I can't get my care needs fulfilled, let alone he resigned as my unpaid carer six years ago, and it is still being ignored by the NHS. It says what it would like to be in a remote rural area. I don't know how many calls I get from people who tell me that my neighbour came in to visit me in hospital. They didn't want me bed-blocking. My neighbour was asked, could they do this for me? And they went, yes, I could do that once in a while. Okay, well then, the neighbour is suddenly their unpaid carer. There is no formality that should be there. There is no independent advocacy when you need it. There are not enough people doing it. There aren't enough carers. The distances involved don't seem to be understood at all by people in cities who are the ones who are mainly the decision makers. I would like to see a lot more understanding of those things. I mean, to actually want to have your rights under the Human Rights Act fulfilled, not to have a social worker, not to have somebody constantly coming into your house, a doctor or whatever, you want to go and see them as you would normally have a meeting with them and be told, oh, no, we can't do that because there isn't somewhere where your wheelchair can get in or where you can go to the toilet, including our brand new Broadford hospital, which just opened in March this year. If you can't get that right and allow people, people are being forced more and more to be backed into their homes in a way in which they don't want and their privacy invaded. I really think that remote rural living has to come a lot more forward in this and show understanding of it, because so far it's not happening. Thank you. A lot of what you're saying will—my colleagues will want to come in on the detail of that, and I think that we'll come back into quite a lot of the things that you've brought up, Dr Gull. I come to Pauline Nolan. And thanks for inviting Inclusion Scotland and me to speak on behalf of Inclusion Scotland and also the people-led policy panel, which we support, which is a group of disabled people, sported people and unpaid carers who need social care support who are co-designing, co-producing, social care support will come back to that. Things that we think are probably missing from the bill I will elaborate on some of what my colleagues have said. Article 19 of the UN Convention on the Rights of Disabled People explains how support should be given to disabled people, that it should be in the community away from institutions, that it's independent living means having choice control, dignity and respect. It doesn't mean looking after yourself or fending for yourself, which maybe it could be misconstrued as, but it means having the supports that you need to have that right upheld. It's a really, really important enabling right. It's connected to a number of other rights in the convention. For example, travel and transport, employment, being involved in the community, being able to participate and uphold your civic rights and rights to family life and so on. It's really, really important. In fact, as colleagues have said, self-directed support isn't mentioned in the bill. That's a massive omission, but the rights to independent living are laid out within the self-directed support bill. We consider that to be really important. Other things that are missing, as colleagues have said, are charges, but I'm aware that that's been worked on in the background to remove unpaid charges. I don't think that it's as far on as it could be or should be, which is a little bit concerning. However, I agree that social care support should be free at the point of delivery. Also, what's missing is housing. It always comes up when we consult, over the years, when the integration bill came in for the public bodies bill. People wanted to connect housing because a lot of support is received in housing. I realise that it's a complex area, but it could be looked at in the future. Doing equality in human rights impact assessments is missing. The financial memorandum doesn't mention how different types of advocacy will be funded. We want to give a big shout-out for centres for inclusive living, for example, which provide other kinds of disabled people's organisations that provide the very initial support for people who are accessing social care support in an independent way and peer support and peer advice from other disabled people who have been in the system. That should be an on-going investment. Finally, there's an issue with the care boards that my colleague Hannah earlier from the alliance mentioned. It talks about co-designing what the care boards will look like, but it doesn't talk about how that will be an on-going feature of the care board. That governance is a real mission that participation isn't included in that governance and isn't there on the face of the bill. It should be there as a human rights-based approach, because participation is the first initial in the panel, which is the human rights-based approach. There are amendments that could be made to that section. We have the opportunity to get quite a lot of the points that you want to make throughout the session. I will hand over to my colleague Gillian Mackay. Thank you for inviting us along today to represent independent advocacy and our membership. We're particularly pleased to see independent advocacy mentioned in section 13, although, as one of my colleagues mentioned on the first panel, it says in the bill that the Scottish ministers may, by regulations, make provision about independent advocacy. We feel that currently this doesn't really have any teeth, and the framework legislation in this form means that how independent advocacy will look in practice is unclear. There are three particular concerns around that. Number one, that there's not a definition of independent advocacy currently in the bill. Two, that the right of access to independent advocacy is not there, and there's not a duty to provide independent advocacy. We're concerned that that means that this will off all to secondary legislation and this narrow scrutiny. We know from other pieces of legislation that how independent advocacy sits within primary legislation is key to how it is accessed by people in practice. For example, in the Mental Health Care Treatment Scotland Act 2003, it includes the right of access to independent advocacy, meaning that people who find themselves under the act can access independent advocacy better than they can when they fall under other pieces of legislation where there's not that right of access or the duty to provide. Having independent advocacy very clearly stated this right in primary legislation would feel incredibly important in how it looks in practice. We have several other concerns, but for the initial look at the bill, that is what we are most concerned about. Thank you to you all for setting out your stall, and that's why I always do this going round the whole panel. Colleys, I remind you that you don't have that, actually. If you can direct your questions to individual members of the panel, that would be hugely helpful. Over to Gillian Mackay. I think that I'll come back to Rona first on this question. Should a single organisation such as Citizens Advice Scotland be appointed to provide or co-ordinate the provision of independent advocacy, or do you see this happening in a different way under the act? We would say initially that advice and independent advocacy are very different types of services. They are mutually supportive, but they are separate. Independent advocacy is under the SIA definition, which is agreed by our members across Scotland. It says that people who are accessing independent advocacy should not be put under pressure to receive any undue advice from independent advocates. Independent advocates are there to help people to access information, to understand what their rights are and to gather their views and to help the people that they are working with. That might be people within the national care service that understand those views and understand their opinions and what they might want to happen, but they would never be there to provide advice. Independent advocacy, we would hope to see it provided at a local level, potentially procured nationally. That would mean that the conflict of interest often arises at a local level when services are procured through their local health and social care partnerships. That conflict of interest is not so apparent if it was a national procurement model. We would like to see that local provision of independent advocacy. We feel that that is very important for independent advocacy to be rooted in communities. Are members telling us that frequently that independent advocacy that they provide is strongest when they are able to be invested in their local communities? That is great. On complaints particularly for—I come to Dr Pauline Nolan on this one—what are the key considerations for ourselves when we are looking at developing a model complaint system for the proposed national care service and for service users that use support? What are the biggest barriers in a nationally structured model of complaints? A lot of disabled people, supported people, currently feel very much unheard when it comes to complaints. It is very difficult. There was a lot of talk about this in the first session about the people that you go to complain to are the same people that will be making future decisions about your social care support. We absolutely have to get away from that and on to an independent complaint system. Unlike advocacy, I echo what Rhona Watt was saying about advocacy. I think that it should be a mixed economy of advocacy. There should be a national advocacy training, but delivery should be very localised. However, when it comes to a complaint system, there should be a national complaint system that is independent completely from the national care service and from the providers of social care support as it currently is. That is really important. It needs to be developed and co-designed from the ground up. It should not use other complaint systems as a basis. We need that approach to co-design in a complaint system. That is what panel members told us because it is so unique when it comes to social care support. One panel member said that they phoned up to complain about a service and they were told all, why are you complaining? I thought that you said something positive and it is well, no, this needs to be separate. Feedback is separate from complaints, so that is also an important distinction. Can you go through it again, please? I was looking through my notes. I have lots of notes here. I think that you have probably covered most of it. What are the key considerations in developing a model complaint system? What pitfalls do we have to look out for, particularly when we are considering service users from your point of view? I think that the other thing is to consider the right to redress what happens after a complaint and to make sure that complaints system is completely accessible for all disabled people, that any system includes information in accessible formats about what will happen throughout the complaints service. Let's face it, anybody coming to complain about their social care support or decision that has been made is already extremely stressed out. It needs to be completely accessible with different formats, different languages, easy read, BSL and so on. It also needs to set out very clearly what will happen and what will happen afterwards. When it comes to service failures, there needs to be definitive commitments about what the redress will be as well, and that should be in the bill. That's me, convener, thank you. James, you wanted to come in. Question for Rona. It's about access to the independent advocacy service. Should it be a right for everyone using the service at NCS or should it be restricted to certain groups, for instance those with a disability? I suppose that it's slightly dependent on how independent advocacy sits currently with provision across the country. We would like to see independent advocacy accessible to everyone who uses the service, but there should still remain specialist provision for people in protected groups. We've seen in the most recent independent review of the Mental Health Act that opt-out independent advocacy provision is one of the recommendations. In order to align with that, it would be useful for the national care service bill to include an opt-out independent advocacy provision for anyone who uses the service, but I would make sure to add to that that currently there's a lot of specialist knowledge and provision for groups, including people with learning disabilities and disabled people around independent advocacy because of how independent advocacy has grown in Scotland. There's a lot of specialist knowledge and understanding of working with advocacy partners that have learning disabilities, for example, and that shouldn't be lost if there is an opt-out advocacy provision for everybody who uses the national care service. I suppose that part of the danger is that if everybody is getting access to themselves, those who might need it most might lose out. Is that a fear? I think that if the service of independent advocacy was resourced sufficiently and there was a procurement model that worked across Scotland, I don't think that that would be a concern because of how independent advocacy is currently procured. The groups that are missed out of the groups that are currently should be provided to or that are not provided to, for example, there are gaps around children and young people that should have independent advocacy out of the mental health act, but they won't receive it. That's an example of where independent advocacy should be providing on the service, but it currently isn't. Those gaps could be rectified by a good refurbant model and sufficient resources. That's an opportunity for the co-production to come into play then. I'm going to move on to self-directed sport and transitions, which a lot of people have already mentioned in the opening remarks. This is going to be led by Emma Harper. Emma Harper, thank you. Good afternoon everybody and to the folk online as well. Self-directed sport is something that I've been interested in pursuing even in the last session of Parliament because we've heard evidence that it isn't being delivered good or well in some places, but it's absolutely fantastic in other places. Self-directed support seems to offer people the choice of what kind of care they want. I've been interested to hear whether you think there should be more of it in the bill and if so what should it say, because looking at the bill directly in front of me and on page 20 and 21 talks about modifying self-directed support legislation. I'm interested in what your thoughts are about self-directed support and then should there be more of it in the bill. Is there anyone in particular who would like to go first, Emma? Not really, just who's the self-directed support expert. Will we maybe go to Dr Gould first? Can you repeat what it was you asked? I am not an expert on SDS, however. I am in receipt of it. I deal with a lot of other people who are, but I think that the main problem for us in a remote rural area is finding enough errors. They're not being recruited, being well enough paid, they're not being retained. Some are given short-term six months, one-year contracts. If they do move to this area, then their spouse or partner has to also find a job, they have to find childcare, they have to find a home to live in. All of those things prevent having enough carers for people to actually achieve SDS. There aren't agencies where you can go, because many of those have closed over the past 10 years or so. Your choice is that you have to do all the hard work, because the NHS doesn't tell you where you can go to get your carers locally unless you use care at home, which is already oversubscribed and therefore not readily available. The other problem is that a lot of people don't understand—for a start, we have people here who have had independent care reviews way back in early 2018, who have been told that their care needs have never been assessed properly. That needs to happen now with someone who has an understanding of their condition and how it affects them. Here we are, 2022, almost the end of 2022, and it still hasn't happened. The whole system is failing in many ways. I will come to Frank McKillop on this. You were first to mention yourself to the right to support, so we will come back to you. I think that the right to support has to be at the heart of the care model that is developed and delivered to a national care system. It is delivered consistently across Scotland at that standard. It is an excellent point. As we see it, the sign above the door says the right thing, but when you go in, you are not actually getting what you expect. That has certainly been an experience from a lot of people. The SDS legislation is in place, and it is excellent legislation. It is fantastic, but the reality is not being realised. Probably the first challenge there is with option 1 of SDS, where you get a direct payment and, effectively, you employ your own personal assistance. There are a lot of people who find that off-putting, because, effectively, they have to become small businesses and employ their own staff. They have to go through all the processes and back-office things that have to be done with that. There are a lot of people who would like to have that level of choice and control around their support, who feel put off from it. That is why the PAA model that enables and develops is essentially giving people the flexibility and control that they would have with option 1. However, we are doing it via option 2, so it is enabled that it is taking on all those responsibilities as the employer and with everything that goes with that in terms of HR, law and finance and payroll and everything else. What we are clear about is that we have our recruitment team that will advertise on everything, but it is the individual who is telling us what they are looking for and they would then actually interview the candidates that are put forward and they are choosing their own staff. The experience that they have is from option 1 SDS, but we have developed that model so that people have that experience, who might not perhaps have felt confident about doing that if they did not have the support of a large organisation with those resources to support that. It is one of a number of models, but it is that sort of model that is a solution that we developed as an organisation and is a charity and reflective of what our members and people across Scotland are telling us that they are looking for. It is that sort of solution that we need to find, because from our perspective, self-directed support, the 2013 act is great and the national care service, as I said, the sign above the door perhaps is the 2013 act and maybe it is the national care service act is what can fill out the foundations that make that reality for everyone who wants to access SDS and that is the core model for social care in Scotland. Thank you, convener. The independent review of adult social care by Derek Feeley was very illustrative of the implementation gap. We have pockets of good practice across the country. I have heard the quote from Paul Sly that let us not use a sledgehammer to crack a nut. While we have really good policy, it is such a delivery and that is why we refer to the postcode lottery, because it is not just different local authorities, it is different partnerships where remote rural areas, for example, where the delivery of self-directed support can really limit your choice and control. It is also within local authority areas, so there will be a good area where you can get access to good support, you can get your needs met, you are given the right information and there will be somewhere else where you do not even get that information. There were estimations from Public Health Scotland that suggested that four out of five people were involved in choosing and controlling the support via SDS options, but the Alliance and the Self-Directed Support Scotland report, their research from 2020, demonstrated that about 50 per cent of respondents had access to all the self-directed support options. The four options of self-directed support hadn't been explained to them properly, they weren't given proper guidance, etc. That's the very first hurdle of accessing social care support. If you don't have that information, you don't have choice and control, and that's the right that's written into the bill, into the act, sorry. Emma Cymru This morning, I heard from two young people who were in receipt of self-directed support, but that wasn't the language they were using. They didn't know that that's what they were receiving, so the importance of people understanding what's being delivered or is that important as long as we deliver the care that is necessary or does it really matter about the language. However, I was also interested—this might not be for the primary legislation, though—when we were in Dumfries, one of the care home owners said that people who are in a care home don't get self-directed support, but that's their home and other folk get it in their home, so why don't care home residents get self-directed support? That might be a question for down the line, I suppose, but is that relevant to what should be in the primary legislation, as far as pinning down what self-directed support is all about? Emma Cymru I'm reminded to those on our panel. If you want to come in on anything specifically, as you hear it being asked, if you're online, just use the chat box and put an R in the chat box or if you're here in front of us, the indication that Andy has just done helpfully. Andy Wightman Yes, so there's been a lot of reports over the years about how well or otherwise SCS is doing, and a number of difficulties have been identified, and inconsistency is clearly one part of the picture. So option 2 hasn't been mentioned—an awful lot of frank mentioned it in terms of the enabled model—and where SCS isn't working well, it's often because there's a low uptake of option 2, which gives people a lot of control but doesn't place as much responsibility on them as option 1 direct payment would do. So part of the answer, I think, is to facilitate option 2. In terms of the health and social care partnerships, often the reason that they're not offering option 2 is just that it's too difficult or there's a lack of resources. I don't mean too difficult to get their heads round. I just mean that the easiest course is either option 1, where you're just handing over the budget and the responsibility to the individual or the family, or option 3, where people—it's just the status quo, essentially. So part of the answer, a big part, I would suggest, would be to restructure or rework option 2 support enables model. I think that that's excellent, which makes option 2 easier for everybody to manage and get their head around. What I would say, though, is that option 3, the status quo, doesn't mean that it's a bad service, which it's often taken to be. It's the majority option across most parts of Scotland. So it all depends. If people are saying, I would like the health and social care partnership to just deliver the support that I need, that could be a really positive option. So the new national care service needs to look at the kind of basics of what a good service—how to offer a good service. One of the key things that people have said that would make a huge difference is to take a no-long-door approach. So many folk have talked about how difficult it is to navigate the system, even to get into the system in the first place, whether it's transitions or if you come into later life as an adult, and to institute a no-long-door approach where it doesn't matter who lifts the phone or who's on reception or wherever you first go in, they then take on themselves to do the heavy lifting and then navigating for that person and to make sure that they then are seen by the right person, assessed appropriately and are given all the support that they are entitled to. That would be a major improvement. Now, I don't know whether that goes into secondary legislation or not, but it's one of the biggest improvements that we could make. I would like to point out that in remote rural areas there is a tendency for everybody to know everybody's business, and quite a few people want to know everybody's business. For a lot of disabled people, they tell us that they really do believe that SDS option 1 is their best option. When we asked them why, the majority seemed to believe that that was because they could then keep from the NHS or anybody else the name of their carers, which meant that when they were in hospital or ill or needed changes in their care assessment, their carer wasn't the one instead of themselves that was contacted because they could privately keep their name out of things, and yet they are still telling us that they are constantly in hospital, being demanded of telling us who the name of your carers is, and we will contact them and we will sort out you going home when that is not person-centred by any means. That is one distinct advantage that people tell us locally in remote rural areas, option 1, to employ their carer direct, although it takes extra time and it is really difficult in many ways for them, is one reason why they do it, which is why I am concerned also about the who sees your records and things. Somebody came to us recently and said, while I was raped in my early 20s, that I wasn't able to have children, though I tried very hard. It is all in my medical records. I do not want somebody to bring that up when somebody comes to do a social care assessment. I do not even want them to know about it. I do not want them to know about my post-traumatic stress disorder. Once it gets out to one person, it can get out throughout the whole of a small community and people are treated differently. That is where I really do not think that when you are an urban dweller, as I have been in for many decades before, there is a huge difference between going into a supermarket, going to a checkout and being anonymous to the checkout operator. It does not happen in a remote rural area. Everybody knows who you are and everybody knows most of your history that has been made public. I cannot stress enough how important SDS is for a lot of people for that reason alone to keep their business to themselves. I am interested in transitions from childhood into adulthood and from the services that lie therein. There have obviously been previous private members' bill and there are bills in front of the Parliament just now that relate to a lot of this. Is the sense that I might have been better to try to capture some of those elements in those bills into this legislation? Do you think that there is opportunity to do that? I think that Bank and Andy have been close to some of the work on those bills, so we are just keen to get that sense, first of all. I will kick off. A general point, first of all, is that, as well as the transitions bill, there is a number of other pieces of legislation going through. I would make the point that it is really important that the different bits of legislation are aligned and support each other and do not duplicate them. There are several points where that could easily happen. For example, there is the proposal of a social care commissioner in this legislation, but there are also other proposals to have a learning disability, autism neurodiversity commissioner or perhaps a disability commissioner. I am just not sure how much current alignment there is in the different teams, all trying to put this difficult, complex legislation. I am not minimising the task, but that is really important. I have forgotten the specific question that you asked. I think that it is important to try to pull some of the threads of those things together with an opportunity in the national care service bill to do that. Obviously, this is a Government bill, but we would not want to lose sight of some of those elements that are broadly supported by the learning disability sector and others. The human rights bill, which should incorporate the UNCRPD, which Dr Gold mentioned, would lay out the framework for the human rights approach, which is legislated for here. That would give the detail of that. What is laid out in the transitions bill should just belong in the transitions bill. I do not think that there is anything that should be transported over here. I think that there is a lot of potential overlap in terms of function. The oversight that is mentioned in the transitions bill in relation to the national strategy could be really helpful. The national transition strategy and the national care strategies need to align. An important element of the transition crossover is whether it is going to be the intention longer term to include children's services in the national care service. If that is going to come to pass, I know that that will be separately consulted on with the children's services sector. That would perhaps make sense to have transitions as part of the national care service bill to reflect that. At the present time, I would probably agree with Andy that the transitions bill stands and will enjoy support across the Parliament. It is very much something that we have supported since it was originally proposed in the previous Parliament. That is perhaps the right place for that just now, although there is uncertainty about whether children's services will be part of the NCS. That crossover is important. To ensure that we are enshrining those transitions from school pupils towards adult social care services as they leave school and potentially leave home and look to use their rights to have a home of their own into independent living, it is very important that we capture that within the national care service bill. It is certainly something that is worth looking at, but I do think that the transitions bill, as a separate piece of legislation, still has a great deal of value. I am going to bring in Pauline Noulan. I am going to bring in Pauline Noulan. Thank you, convener. Inclusion Scotland and Camp Hill Scotland led on voting the idea of a national care service and getting an MSP to sponsor it. We voted the policy memorandum, so we are completely supportive of the transitions bill. Over the years, we have been told so many times that young people, particularly, go through transitions 16 to 18 and then to adulthood. The support and all their social work and everything like that just drops off. In fact, it has just happened to a family member today who is autistic and turned 18. My sister—this is in England anyway—had the phone call today and phoned me up in tears because her social work has just told her on the phone that all his support has been dropped because he is 18 and he has got some money in the bank, so no support to get him PA support or to travel independently and things like that. That is all gone. That has been a constant story over the years. The transitions bill will bring in that right to have a transitions plan and ongoing discussions with the right people throughout the transition. However, PLPP members agreed that children's social work and being involved in the NCS would help with those transitions. That was the proposal, why it was proposed to be in the NCS, because those services would then be delivered all under one roof. At the moment, there is absolutely no continuity. I really believe that if children's services are going to be in the national care service, that needs to be taken alongside the transitions bill when it becomes act. I suppose that follows on on the point that Frank McKillop made just around that question of social work. There is a debate for its same referred evidence on both sides of the argument about social work and children's services going in or out of the scope. Do you think that it is important that social work as a profession stays together wherever the end point is because of the points that have been made around transitions? I do, and there is a value in that, certainly. I think that, from a enable's perspective, our priority is in terms of the failure review recommendations being realised around adult social care. However, the value of social work as a profession is very important to ensure that that is kept together and that there is recognition for the value that that delivers to people and importance that that has in terms of both children's services and adult social care services to ensure that people are actually having access to the options around self-directed support and the support that they need. I think that there is definitely a value in that. However, again, our priority very much is to ensure that the failure recommendations around adult social care are fulfilled. I am going to hand back to Emma Harper, who wants to pick up on care records. Thank you very much, convener. Just picking up on what Dr Gold said about rural areas and everybody knowing your business in a rural area, I cover South Scotland region and it's very rural. I think that you're right, folk know what you're up to. Before you even know what you're up to sometimes in rural areas. I think that we've probably got other members that are very aware of how rural healthcare gets around the town or the village that we're with. In terms of discussing digital care records or a way of sharing information, certain stories are allowed to be repeated and other stories remain buried if that's the choice. What are your fears of the care record and what would you hope to see as something that would be deliverable to help to improve care on the ground? Personally, I would like to see a variety of options of how records are held and accessed, but also a full log of what has been accessed and by whom. For some people, instead of them constantly having to repeat themselves to staff, it's easier for them to have a certain portion of what they want them to know available to them and accessible by them, rather than having to constantly repeat information. It's difficult because I would term that childhood game, Chinese whispers, where the more people get told something and pass it on to someone else, the more it changes and grows legs and becomes something far from the truth. There needs to be a lot more respect by the people who hold that sort of information as to what use it is put to, what they think they have access to. I have come across people who have used it to their advantage to win an argument professionally rather than to show any real care for the person that it was about. I think that a lot more has to be looked into it because we are attending to go to a very digital age and put all our one-basket of eggs in the electricity supply thing. Even in a remote rural area, I have been to hospitals where they have said that the computer system has gone down and that we cannot access your records and we do not know what you have had before. That is not the point at which you want nobody to be able to access your records, if it is an important thing. Emma Cymru I know that, on the face of the bill, the digital care record that is accessible, secure and safe is absolutely what we need to be thinking about. You are right about having choice and traceability and knowing who has accessed records and things like that. For me, coming from a nursing background where we are operating on somebody and you want to know what has happened in the past, previous surgeries and things like that, it is really handy to have a record where we can look for safety reasons as well. Also, there is a third sector that does not have access to the records or a record. Is that something that you would support? Who is looking after this person, self-directed sport or whatever? Is it necessary that the right people have access to the record and see what is going on? Andy Rowland That is a really important question. I think that the key thing that people learn disability has told us is that they need to have control over it rather than just saying ahead on principle that those people should and that those people should not have access or that this is the amount of access that those folks should have and that is the amount of access. The complex system that Dr Gold described has to be co-designed so that people who are going to benefit from it or be harmed by it own it. That might sound like a fudge, but it is really not. It is so important and it will be so easy because it is technically very complex to design this system, to leave it to the technocrats, but it is so important that there is a co-design process going on there. I just wanted to remember what happened with GERFEC and the difficulties there with data sharing. It is really important not to make that mistake again. Also to think about the scope of it because it links with support planning. How, to what extent, does the support planning link with the data record? How is all that going to be afforded because some health and social care partnerships at the moment have two IT systems working one for health, one for social care and an effective data sharing system to work? It has to be using ideally one system or certainly two compatible systems and that just is not the case just now. We are talking about a massive investment that I do not think has been put into the financial memorandum. You want to pick up on something that Andy may pick up on an increase in memory loss, for instance, which might trigger a need for an assessment or more care or something like that. As part of the co-design process, the likes of food train or meals and wheels equivalent should be involved so that they can either feed into the report and not necessarily have access to the report. Again, that is about the on-going assessment. Is that something that we should be thinking about in the co-design as we move forward? That is a great idea and a great example, but I do not think that I should be the one to say that. I think that those questions and the question that you posed about the rest of the third sector, which has a lot of the day-to-day contact with people, and the extent to which they have access to either input or read or get access to, has to be people who use social care that make those decisions. That is a really good example. I remember someone talking who lived in the sky saying that she helped to run lunch clubs and that was a brilliant early warning system because if someone did not turn up to the weekly lunch club for a couple of weeks in a row, he would start to get there. That would be a red flag and it is time to look into that. To reiterate what my colleague just said, it is really important that it is down to personal preference and that it is all co-designed. That would be a really good idea to bring into the co-design. The only additional thing that I wanted to add is that the control over the information that is gathered, and you could look towards the Scottish Government's consultation on the health and social care data strategy, which was done recently, and the PLPP gave lots and lots of input to how that strategy should be. They had lots to say, but really important is that although not having to repeat your story over and over again can potentially be liberating, if confidential information is recorded wrongly, you should have an opportunity to be able to feed that back and for that information to be changed in accordance to what you said, rather than it just being shared with other people and other service providers, the wrong information keeps coming back to you. That is all that I wanted to add. I agree with everything that has been said, but I have already done so. I just wanted to reiterate what Pauline McHugh has just said. It is when something is found to have been recorded incorrectly in records, that is where the major difficulty is getting that corrected. It can happen quite frequently if somebody has a condition that changes over time, then those changes may not be recorded correctly or updated everywhere. That can cause major issues such as people turning up in hospital as inpatients and not getting a single meal whilst they are in hospital, or people not understanding their care needs in terms of food intake and things. There has to be a way of correcting wrong information. As someone who has multiple times had it recorded in my medical notes and my occupational therapy notes, I have had several surgeries to both ankles and I have never had surgery to an ankle in my life. I have really welcomed some way of changing it amongst others. I will move on to the discussion on co-design and the sequencing of that, led by Paul O'Kane. I suppose that co-design is at the heart of the approach to the bill and that the Government is keen to co-design once we have the framework legislation passed. My initial question is do you feel that there should have been more co-design in advance of the bill coming to its legislative process? I suppose that, going back to the first question that we had at the head of the session, which is what is missing from the bill that people have in co-design processes that are advocated should be on the face of the bill. I do think that, as many respondents to the consultation have noted, the bill is a framework bill. We feel that there is a lot of detail behind that that we would like to see. There is always a feeling that some more co-design before this stage would have been a good thing. However, I also take the point that perhaps, especially in the third sector, we always call for more co-design and there is a point that we just got to go on with things. I just appreciate that as well. The feeling review itself, going back, you know, is more than two years since the feeling review began. There was a lot of sector input at that point. I think that there was quite a lot of co-design. If we call it that, there was certainly a great deal of consultation. I think that many across the sector feel that a lot of work was done at that stage to build the feeling recommendations. I think that where those have been pulled through into the national care service bill, I think that we would be satisfied that there has been a good deal of consultation with the sector that has happened to get to that point. Certainly, co-design is something that is important to us. Obviously, it is a charity that represents many people who have a learning disability. They are very keen to be involved. Many of them are involved in the various panels that are involved in supporting the design of what the national care service is going to look like. I am also very conscious that where there were 1,291 responses to the Government consultation, so a lot of people have views on that, but not always 100 per cent in agreement. There is always a danger that co-design becomes an excuse to hold things up. That would be our concern there. There is a lot of practice in the sector that is effective that we need to learn from. It is important that co-design is a genuinely productive process that we are bringing in views, experiences of social care and how we design the national care service itself off the back of the bill. There is also that importance of learning from what already works and learning from what is effective in the sector. Our biggest call would be that what we currently have for social care in Scotland is not working, so we need to change that. Urgent action is required, so we feel that things are never perfect. There are always imperfections. Probably more co-design earlier would have been preferable, but we certainly would not want things to be held up on that basis. The on-going co-design is certainly something that we would support to try to make sure that we are definitely getting this right, but we need reform to happen. Thank you, Dr Noel Winslates. That some of the co-design has already started, but we are not sure which. We are not sure what has happened to the design school, which was supposed to be training people in what co-design is. We are still a bit unclear on the difference between co-design and co-production, which is what we do. Apart from what I would say about co-production, you are probably not starting from a blank sheet, but co-design you should be. Really, from my point of view, if this bill had been co-designed, a lot of it was done through consultation, but if co-design was done, for example on the local care board, yes, a lot of this needs to be co-designed and the detail needs to be added, but the wording would not say that the board must seek views on a draft of the plan, it would say that the board would co-design the draft of the plan, it would say that it would not say the wider community, which could include anybody who has no interest in social care support, it would say that they would go to supported people, their families, their supporters and unpaid carers, and in the case of a special care board, it should say that disabled people, including mental health survivors and their organisations, families, supporters, unpaid carers and their organisations. If that co-design had been done properly, it would have been more specific and talking about co-design being embedded through the processes of governance and not just consultation. That is really, really important. If you are talking about co-designing the system, the on-going co-design needs to be in there, it needs to be in the monitoring, the evaluation through every part of the system and not just right from the start. It is important right from the start, but it has to be on-going as well. Following on from that, there is a commonality about co-design being clearly part of this process. I wonder if Andy might want to comment on how people who have disabilities, people who have blind disabilities, particularly, will be—what is your vision for them being involved in that co-design and how do we ensure that they are involved in that co-design? First, I commend the vision and the commitment to co-design. That has been so refreshing. The commitment has been there right from the start. I echoed what some people said, a lot happened before the co-design actually kicked in. That is a little bit regrettable. However, the commitment to co-design, which is really visible and tangible now, is great. In terms of people who have learned disabilities being involved, I think that there is a little way to go, but again there is a commitment to learning how to do it better. For example, small examples, but meetings with stakeholders have started to be done by Zoom, which had been impossible earlier on. However, now, folk have made the commitment and have realised that Zoom is a more accessible platform than Teams for a lot of people. That change has been made, and that is great. The model of the lived experience panels has been implemented. We have some concerns about the accessibility of that process. Folk on the national care service team pointed to the success of the social security lived experience panels, which they borrowed the model from. However, people who have learned disabilities struggled to get involved effectively in that process. There is a lot of learning still to be done with that. If you break it down, there are a lot of different points where the inaccessibility can come right from joining or applying to join the panel. I helped to support someone to join because although there is a phone number, which you could phone if you wanted support, they did not have the confidence to do that. They did not know who they were going to be phoning, who they were going to answer on the phone, and that was enough to make it too difficult. It is a question of coming back to folk always and saying, is this working for you? How can we improve it? A lot of it is just to the accessible information and gaining people's trust. That is not just easy read, it is having a range of formats that are available to people. However, there is forward motion, which I am very pleased about. The second part will be a question about going forward. I will echo what some other people said about the need to continue the co-design ethos after the national care service is in place. For example, the three-year national care service strategies should be co-designed as well. At the moment, there is nothing that suggests that they are going to be. It needs to be there as an on-going commitment to co-design and then, as each thing comes up to be implementing it. Sorry, that has lined up a bit of a waffle. I will bring in Rona Wilder. Paul, if you have another question, I will answer you, but if not, I will go to Tess White. I will bring in Rona. Thank you, convener. It was to a recent point around the independent advocacy that we would like to see in the face of the bill to include collective advocacy and how important that would be for co-design, including a right to collective advocacy that would be incredibly useful, particularly if the collective advocacy groups were able to refer systemic human rights concerns to an independent complaints body. Having collective advocacy groups that are autonomous from the system is a really useful way to make sure that people can highlight their on-going concerns. This would be important from the point of view of co-designing at the start, but, as colleagues have mentioned, making sure that gathering people's views on an on-going basis, because everything is not going to be perfect from the start, would be really important. Having independent advocacy models in there that support the principles of the bill would be a very useful way to do that. Thank you, Rona. Can I go to Tess White for a question? Thank you, convener. My question is to Andy Miller, if I may. Andy, the SCLD has said that some areas of the bill are within the scope of co-design, although others are not. In your opinion, what areas do you feel are not subject to co-design? Thank you. I'm sorry, if I wrote that in our response, it was the opposite of what I meant. What I meant to say was that in the original paper and in the language of the bill, there were certain areas that would bring a co-design methodology to bear, for example, the development of the charter, realising rights and responsibilities, but there were specific areas. The point that we wanted to make was that we hoped that those would not be the delineated areas where co-design applied and that it should be co-design more broadly. The other point beside that was that it felt like it was one side that decided which areas were to be amenable to co-design and which areas weren't. It wasn't the side that included people-learned disabilities, so there was a slight objection to that. I'm sorry if that came across wrongly. It may have been me interpreting, so that's really helpful. Final step questions from Evelyn Tweed. I would like to go back to something that Dr Gold said at the beginning of the meeting about issues that are being experienced by disabled people and those in remote and rural areas. How can we get the co-design process more inclusive to make sure that the issues of the past are not carried forward into the national care service? It's to Dr Gold. I think that the issues in remote and rural areas are far bigger than just the national care service. We've been talking about people being included in their communities. Will their communities need to be accessible to them? When somebody who drives a six-metre long wheelchair accessible vehicle that requires an additional four metres out of traffic, moving traffic at the rear for them to get in and out of, and it takes a lot of money to fuel, yet they need to pay in smaller shops who don't have card machines who are like one single person shop in their community, then they need cash to do that because they can't use cards. They also need cash to buy their fuel, but they have to travel sometimes over 50 miles to the nearest place because they can't use an ATM because they are not being designed as being accessible to them. They can't get it to their post office because it's not accessible to them. They can't use a toilet in their brand new old-signal dancing hospital because it's not accessible to them because their needs were never taken into account in the first place. I think that we have a huge problem in remote rural Scotland in particular, but in other parts of Scotland as well, and it doesn't just apply to social care. I think that it's a huge problem and it's a huge problem that's not going to go away until it's addressed nationally for everything that provides a service because there is no way that a disabled person should be not only, first of all, penalised financially because they're disabled but also penalised because their community doesn't seem to care enough to follow the law and the onus is on the disabled individual to, first of all, be discriminated against and then be able to take a case. It's very difficult to find somebody to take a case and if you lose in a legal technicality and you lose the roof over your head, what is the point? But we're already penalised if you need adaptations in your home. Adaptations and aids are not really something that are in the national care service bill, but I strongly believe that they should be because they link to you being freely able to do things yourself as independently as possible. However, if you have to save up to have so many aids or adaptations in your home and as a result of that you lose your access to SDS because you've built up the savings so you lose it, then you have to pay the savings so you can never win if you're disabled, you can absolutely never win. It's as simple as that until people actually see disabled people as equal members of society who have a right to be treated equally, which does not happen in Scotland, then nothing's going to change and it's very sad to have to say that and to represent people who say that to me all the time. Can I just follow up Dr Gould and ask you? I totally appreciate everything that you just said there. In terms of the co-design process that the Government wants to take forward so that the views of people like yourself in rural areas are heard, what would be your plea to them as part of the accessibility for you taking part on the co-design process? Yes, yes. Sorry, can I come back to you now? I've got somebody on the other line, and I'll come back to you in a bit. I don't know where that's coming from. Well, maybe what we'll do is we'll maybe write to Dr Gould and we'll get that question specifically answered, because I think it's an important question that Evelyn has asked about the co-design process, and to get that feedback might be really, really helpful. We've run out of time anyway. What we'll do is we'll follow up, the committee can follow up with Dr Gould, because obviously somebody's needing their attention at the moment and I don't really want to disrupt that at all. We'll write to Dr Gould and get her specific feedback. I think that I'd like to put that out to everybody, because I think that that's part of what we might want to feedback in our report about the accessibility issues that might be for that co-design process, both in terms of time, capacity, funding, support and also making sure that lots of various people have had the opportunity to input into that co-design process. Dr Nolan, I'll bring you in before we wind up then. I think that it was Zandi who talked about the use of Zoom. That's probably going to be better for people in remote rural areas for accessibility, but it's going to help for people who can't travel to central belt things and I'm aware that this is being used. The trouble is, as mentioned earlier, that a lot of disabled people are excluded from digital engagement, so there needs to be consideration of doing in-person co-design, perhaps in some of these remote rural areas where there's probably going to be even more barriers and going to very specific localities, not just one region or somewhere where everybody can easily access, so you'd have to go to Sky as well as going to Inverness, because the highlands are so huge. Similarly, there are numerous places in the Scottish borders because the transport network doesn't connect necessarily. However, you need to consider the impacts of different things, such as different aspects on remote rural areas, such as having a charter, having a national advocacy service or local advocacy services, etc. It goes through the whole co-design of those aspects of the bill. Then, how it impacts on different people with different impairments, people with different social care support needs. There's a lot of consideration that needs to be brought in to co-design and I can appreciate how hard it's going to be because social care support is incredibly complex, the current delivery of it. I should have said at the start, by the way, that eligibility criteria hasn't been addressed in the bill and how people are going to have their needs met hasn't been addressed at all in the bill. That's going to be really important going forward as well. What's going to replace eligibility criteria? It was mentioned in the previous panel as well, and it's been mentioned by a few people. We've put Dr Gull back the last word to you, Dr Gull, before we wind up. Sorry, could somebody remind me what the question was? The question was that, given all the wider concerns that you've got, and we'd totally appreciate those, we would be keen to know what the message would be to the Government as they start their co-design process after the passing of this bill that would help somebody in remote and rural areas to be involved in that co-design. What practically could they do? Well, involve them in whatever way they feel they need to be involved in whatever method. One thing is that a lot of people have been using Microsoft Teams for meetings and disabled people actually find that really difficult to use. They find Zoom much easier. I have personally found this software really challenging for me because of my disability to find out what people's needs are in terms of communication and planned communication and things. I have shocked people, researchers and various civil servants that I have spoken to over the past year and a half, being told that this is how the journey or the pathway from this to social care works. This only takes about two weeks. We have stopped laughing and said that that would take over two years. There needs to be a complete understanding, which is why I suggested that, after the first national care service forum took place in Perth, they might like to move it to Skye next year and see what it is like when you are claiming that people should be using mobile phones in an area where they do not have a mobile phone signal. They do not have a whole IT department behind them if you are asking individuals or small charities to be involved. Things are just so different and there has to be some degree of understanding from the decision makers and the researchers of how different it is. Not everybody here has broadband. They do not even have access to broadband if they want it. There is an assumption that the whole of Scotland is connecticable easily, digitally. We have disabled people and elderly people who only use mobile phones with large buttons. They can only receive a text or a phone call or make it write a text or a phone call. Not everybody is all singing or dancing like elsewhere. It is important that people feel involved because, when people do not even understand what it is like for them here, they do not plan for that or allow for that. It really is important that we are discussing. I was at a meeting recently where somebody said, it is quite simple, you just go to your local library. Somebody in Shetland said, for that, for me, that is two ferry rides and half an hour's drive as well. The person who said, just go to your local library, could not believe the distances involved. There are huge distances involved and it means that people get left out. I would ask that you do as much as possible to feedback that those people are not left out because they are the ones that end up being excluded in the whole national care service. I note to end on that. That brings our formal meeting to a close. At our next meeting, the committee will continue our scrutiny of the national care service Scotland bill, with the further two evidence sessions focusing on related services, public protection, older people and Anne's law. I thank everyone who has joined us in Glasgow today, everyone who has been involved in the formal meeting and to the quarriers for hosting us, and also to everyone that we met this morning in the centre of Glasgow for their time this morning. It has been hugely helpful. I think that this type of outreach and going out to different places in Scotland as much as possible can only help to make a better scrutiny process. Thank you to all for helping us out in that regard.