Local Government, Housing and Planning Committee

Meeting date: Tuesday, November 29, 2022

Official Report 749KB pdf

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National Care Service (Scotland) Bill: Stage 1

The third item on our agenda is to continue our scrutiny of the National Care Service (Scotland) Bill. We have two panels of witnesses representing people who receive social care. For our first panel, we are joined online by Mike Burns, who is representing the Granite Care Consortium but is also the chief executive officer of the mental health charity Penumbra; Sophie Lawson, policy and participation manager at Glasgow Disability Alliance; Stephanie Fraser, chief executive of Cerebral Palsy Scotland; and Andy Miller, strategic lead for participation and practice at the Scottish Commission for People with Learning Disabilities.

I welcome our witnesses. If they indicate when they wish to respond to a particular question by putting the letter R in the chat box, I will make sure that we bring them in. We have only an hour for this panel, so I remind members to, where possible, address their questions to particular witnesses. Of course, I will potentially go against that request when I begin my questions.

I will begin by focusing on the challenges facing care delivery. I am interested in your perspectives on the main problems with the way in which social care is delivered currently. Do you agree that there is a postcode lottery in care delivery in Scotland? I will start with Stephanie Fraser and then open that up to others.

Thank you for inviting me to the committee.

People with cerebral palsy fall between the cracks. Cerebral palsy is a very good bellwether condition, because it is a long-term condition for which no medical procedure or drugs can magically make things better. People with cerebral palsy will lead as long a life as anybody else if other complications do not occur, and what they can achieve in life and how independent they can be depend on how involved their disability is and their access to help and support.

People with cerebral palsy fall between the cracks of the current system. People with very involved CP who have a large care package from childhood are relatively okay but, when those needs change—the needs of people with cerebral palsy do change as they age, even though it is not a progressive condition—who is able to assess that? People who, as children and young adults, do not need access to care, quite often need access to some care as they age, and there is confusion around how they can access that and whether it is through health or social care.

11:00  

Thresholds and referral criteria are cumbersome. The health and social care system is not fully integrated at the moment. It is too disjointed, and there is too little access to condition-specific expertise when it is required. People are passed from person to person without any one person taking responsibility.

There are no specialists for adults with cerebral palsy. You asked whether there is a postcode lottery. It is not as simple as saying that one area is better than another. If someone with CP has access to a person—a social worker, advocate, physiotherapist or whatever they might be—who helps them to navigate the system, they will have a better outcome. It is just pot luck as to whether people find that positive first person.

Thank you—that is very helpful.

Andy Miller has indicated that he would like to come in.

Thank you, and good morning, everyone.

A lot of people with learning disabilities experience situations that are similar to what Stephanie Fraser has just described. Systemically, from what people with learning disabilities have reported, it is more of a postcode lottery for them in some respects, which I will come on to. In general, however, people find the social care system complex and inflexible. It is hard to get into, and it often involves multiple retellings of the same experiences. Those experiences are often traumatic, so retelling them is difficult. For people who enter the system as an adult, it is difficult to find out who to speak to and how to get an assessment, and that is complicated if someone does not have a formal diagnosis of a learning disability, which is often the case.

For people who have social care as a child and then move into the adult system, that is really difficult and complicated, and it is very frustrating for people. A lot of them describe the experience as being like falling off the edge of a cliff, because the level of service provision for an adult is often much less than what children with learning disabilities are entitled to. It will always be a complicated process, because so many agencies are involved, but the co-ordination of those agencies is regularly very poor. There is no clarity between the agencies about who should lead the process and how wide the process should be. That is one issue.

Eligibility is another issue. Over the past few years, eligibility criteria have tightened and become increasingly high so that, unless someone is in critical or life-threatening need, they are just not eligible for social care. It is a binary system, so people get it if they are in critical need, or they get nothing.

There is a great quote in the Feeley report from someone with a learning disability—someone I know, actually—who said:

“Social Care should be a springboard not a safety net.”

However, the springboard function of social care is not working. There is a focus on crisis prevention and not on capacity building or protection of human rights.

One area in particular that you could describe as a postcode lottery is that of social care charging. Some people pay almost nothing, and some people who receive similar levels of social care support pay exorbitant amounts.

High turnover of staff is really problematic, and that has been particularly bad since the pandemic. The importance of relationships in social care is really high, and it is getting harder and harder for people with learning disabilities who use support to have a strong relationship with someone, because the turnover is so quick.

This next point is not something that people have told us, but it is clear that there is a lack of data about people with learning disabilities. If you want to find out how many people in Scotland have learning disabilities, you cannot—the information is just not there. If you want to find out how many people with learning disabilities in Scotland are on a housing waiting list, you cannot—there is no data. The Fraser of Allander Institute recently highlighted the particular invisibility of people with learning disabilities in data collection in Scotland. That makes service and policy planning impossible. If you do not know how many people your policies or plans will affect or what their support needs are, it is very difficult to plan.

I mentioned the experience of the Covid pandemic. In many people’s experience, support levels have not returned to the levels of support that they had pre-pandemic. There are a number of reasons for that, but that has been awful for people’s life experience, to the extent of making them feel suicidal. That applies to people with learning disabilities and family carers, where family carers are involved.

Thank you for that, Andy. I believe that Sophie Lawson would like to come in on these questions as well.

I will echo a little bit of what Stephanie Fraser and Andy Miller have said, because our members have had similar experiences. For context, Glasgow Disability Alliance has a membership of more than 5,500 diverse disabled people, with different outlooks on many things, but this is one area on which we have a completely unanimous position: the social care system, in its current form, is too broken and fragile to meet the real needs of disabled people in Glasgow and across Scotland.

Our social care expert group is made up of over 100 disabled people in Glasgow, who dedicate their time and energy to campaigning to improve the social care system for themselves and others. Some members have gone months—in some cases, over a year—without a shower. They have been called lazy by their care workers for asking for help or have been put to bed while it is still light outside. As Stephanie said, they have met extremely long waiting periods for assessments. Some are waiting for months or years for urgent intervention. Again, we know that eligibility criteria are set too high and are based on reducing dependency on services. We have found that disabled people do not feel believed or listened to by social care providers and that trust has broken down.

Among our members, 83 per cent of those receiving social care support have reported that they do not get the support that they need when they need it. As others have touched on, we are facing a high turnover of care staff due to poor wages, poor progression and few opportunities. Disabled people object to that and sympathise with care staff but, for them, it means inconsistency, no-shows and cuts to care, which, as people have already pointed out, have a devastating impact, often on mental health, and create a life-or-death situation.

On the second question, we have definitely found inconsistency between, but also within, local authorities. A lot of our members talk about it being about who you get. We know of people living on the same street, where one has had a brilliant experience of social care and the other has had a difficult and traumatising experience. We have also found that many GDA members have moved local authority in the hope of finding better care in a different area. That is how stark the postcode lottery is. We are seeing the real consequences of that among our membership.

Finally—this point was touched on previously—there is an assumption that when statutory provision is failing, families can provide care to fill in the gaps, which can change relationships and often puts families into poverty. When inadequate carer support is in place, that creates real financial and emotional difficulty for families. From our perspective, we are in the midst of a social care crisis that requires urgent intervention on all those points.

Thank you, Sophie. Mike Burns would like to come in as well.

Good morning, folks. I echo a lot of what other contributors have said. From my national perspective on mental health, access to social care is very disparate and, at times, very desperate for people. With my Granite Care Consortium hat on, and as someone responsible for taking forward what is possibly the biggest test of change in social care in Scotland—a whole-place test of change in the city of Aberdeen—I know that, even in single locations, there is still a disparate picture facing people who are trying to access social care. To see that, we only have to look at the size of the unmet needs lists and the waiting lists for people not only to get on to social care but to get a social care assessment.

Is there a postcode lottery? Yes, I agree that there is. With regard to locations, the situation is still disparate, in the sense that we have a disparate structure with three layers of provision and none of them quite tie up together. We have tried integration joint boards and self-directed support—your later questions might come on to that—but the joined-up thinking and joined-up delivery are just not there.

I will continue with another question and will start with you, Mike. If others want to come in, please indicate so in the chat function.

The committee has heard from others that the proposed national care service is a disproportionate solution to address some of the challenges that you have all laid out this morning. I am keen to hear your views on whether legislation is needed to bring about improvements. Is there another way in which we could approach needs in a more joined-up way and do the things that you have discussed?

In 2014, we tried to roll out IJBs. I remember sitting on a strategic planning group for IJBs in Dundee and watching as eight silos were reduced to four silos, with two staying in local authorities and two staying in health. That was some people’s view of integration. Then we had self-directed support, which did not quite achieve the person-centred focus that we believed it would. Those were two pieces of legislation that should have brought more integrated approaches to the delivery of social care, but they have not been successful, so I would argue that the legislative route is possibly the only one that is left open to us if we are to create something that is truly integrated and truly creates a voice for the people who use the services and all the organisations that deliver them.

You have only to look at Granite Care Consortium and what we have tried to achieve in Aberdeen in our first two years of operation. GCC is one example of the pockets of really good practice across Scotland where we have seen attempts to create social care integration. However, that has taken the good will of people and social care partnerships making a choice and taking a gamble. It is just a one-off. We should have something similar that delivers services across the whole of Scotland, rather than relying on getting the right people around the table. We need a framework to get the right people around the table to make that happen across Scotland. For me, that would be a legislative framework.

I will echo what Mike Burns said. A lot of GDA members feel the same way: that legislative change is the only route out of the current crisis. Legislative change is needed in conjunction with increased resources and support for leaders, driven by political buy-in. Legislation alone cannot change anything, but it is needed to start the change so that the social care system becomes fit for purpose. In Derek Feeley’s “Independent Review of Adult Social Care in Scotland”, he said that legislative change is needed on a national level to put the progressive reform in place and fix all the problems that we have laid out.

GDA members feel that we need accountability at a national level, consistency and better standards to ensure that disabled people’s needs are met. We need legislative back-up to ensure that that is implemented in the social care system. However, the legislation, as it stands, needs more commitment, particularly in secondary legislation, to ensure that a human rights approach to social care is implemented and that the change is properly put through. That includes more detail on accountability, the charter and the formation of care boards, which must have representation from disabled people’s organisations and other collective voices to make sure that that is carried through.

11:15  

I am going to take a slightly different view from the others, who have pointed out that we have had a lot of legislation in the space of integration, starting with the Social Care (Self-directed Support) (Scotland) Act 2013 and then the Public Bodies (Joint Working) (Scotland) Act 2014. Audit Scotland has examined much of the integration process, and there are numerous Audit Scotland reports. I would argue that that legislation has not been implemented and that people have not been held to account where they have not implemented it.

The other thing is that we have national standards and guidance. In my area, we have the framework for action for neurological conditions, which covers acute community health and care; the Health Improvement Scotland general standards for neurological care and support; guidelines for individual conditions, including Scottish intercollegiate guidelines network guidelines, for example, for epilepsy, and, where SIGN guidelines do not exist, National Institute for Health and Care Excellence guidelines for children with cerebral palsy and adults with CP, for example; and such frameworks as getting it right for every child and ready to act, which is the allied health professionals’ national framework. It seems that none of those is being implemented or is known about by the wider health and social care workforce.

The answers to what we want are in those pieces of legislation, but people are not being held to account for implementing them, or not. I have an example of an instance in which a very large health and social care integration joint board contacted Cerebral Palsy Scotland, in response to a complaint from a family of an adult with CP, to ask whether there were any frameworks for the care of people with cerebral palsy. I was shocked that they did not know that those documents existed and that they were not working towards them. It is not rocket science, and the answers are there.

I agree with those who spoke previously and said that we have a problem with workforce—we would call for a national workforce strategy—and that we have a problem with data and invisibility. As previous witnesses have said, it is not just that we do not know about people with learning disabilities; we do not know how many people there are with neurological conditions in Scotland or how many people there are with cerebral palsy, and we do not know how many unpaid family carers there are who, frankly, are backing up the system and being the safety net when we want the system to be a springboard.

There are two questions: first, is legislation helpful? Secondly, is the bill, as it was consulted on earlier this year, the right legislation? It is clear that change is needed. We think that some legislation would be helpful in increasing accountability and, perhaps, in meeting national accountability through its implementation, but we also agree with a lot of what Stephanie Fraser said. There is already a raft of legislation and policy frameworks that are not being implemented. We are particularly disappointed that the self-directed support legislation has not brought about the change that we all hoped for. If that has not worked, why should the national care service legislation work?

We were disappointed with the National Care Service (Scotland) Bill that came out earlier this year, because it focused solely on the structure of the new service and did not give any assurance that that structure will bring about the human rights protections, capacity building and possibility for early-intervention approaches that were put forward by Feeley.

We were particularly disappointed by the financial memorandum, which explicitly excluded certain key building blocks in Feeley’s vision for a new national care service. The costs in the financial memorandum were big enough, and that is very worrying at this time, with so many other financial pressures on the Scottish Government. Is this the right time to bring in expensive new legislation? However, even worse than that, the memorandum covered only a fraction of the real costs that will be needed to implement Feeley’s vision for a human rights-protecting national care service. The financial memorandum does not cost meeting current unmet demand; investing in community-based services; covering the loss of care charges, if those are to be abolished—they cost £1.3 billion back in 2013, so we are talking about massive amounts; implementing the new minimum terms and conditions for workers; the cost of new structures, such as the cost of the office of a social care commissioner, if there is to be one; and the investment in independent advocacy services that will be needed and that Feeley talked about. None of those is costed in the financial memorandum.

It will be a huge cost. The worry is that, if you pay just for the structure, it will still be expensive, and it will not bring about any of the outcomes that people with learning disabilities and other people who rely on social care support are hoping for from the new service.

I want to come back with a supplementary to you and Stephanie Fraser, because you brought up the fact that legislation already exists. Andy, you have just talked about the cost of bringing in the national care service. We have existing legislation, we have reports from Audit Scotland and aspects of existing legislation have not been acted on. I would love to hear a little more about why you think that that has not happened. Is it to do, in part, with a lack of funding?

Yes, there are issues with the current set-up. For example, a lot of it is to do with confusion about who is responsible for what. There are issues with the boundaries of the health boards, local authorities, IJBs and health and social care partnerships not being coterminous, and there is confusion about who does what. We find that, if people with cerebral palsy, in particular, who are not in receipt of big packages, present because they want help to access employment or something like that, they are told, “You can’t do that because of your cerebral palsy, and, if you want that treated, you need to go to your GP.” Where is primary care in all this? The lack of sharing of information among agencies is leading to confusion. As I say, the confusion about who is responsible is one of the reasons why the current system is an issue.

There is a lack of co-ordination and clarity, but there are also financial pressures on local bodies, local authorities and HSCPs and, I suppose, on health boards as well. If we take SDS as a specific example, we see that there is a cross-over period. It is one of those bits of legislation that, because it is putting forward a person-centred system of support, you would hope would result in a system that is very efficient and streamlined, meets people’s needs and has no fat in the system, but getting to that point requires going through a process that takes extra investment, which was not provided.

There is a lack of accountability. I am not saying that any individual or any one HSCP takes a “So what?” attitude, but if SDS fails in any health and social care partnership, there are no repercussions, except for the individuals and their families. I would always put forward an improvement programme. I am not saying that we need to go round punishing health and social care partnerships or chief execs or anything—improvement and learning from good practice are always much better—but I am just saying that there are no repercussions for failure.

One of the things that come to my mind is that part of the reason why the minister talked about the NCS being brought forward was to put accountability at the door of ministers. That would be part of why it is being brought in.

Hello to the panel online. I have to start by asking you this: do you see the national care service proposal as being the legislative instrument that can help to transform services and to deliver the consistency that I think I am hearing you say we need across Scotland? There are a number of issues that Andy Miller—and everybody, really—raised that outline a huge number of problems and experiences across Scotland. Do you see the National Care Service (Scotland) Bill as being the instrument to help deliver that? May I start with Sophie?

Just to touch on what Stephanie Fraser said, I think that the national care service offers a solution, if done correctly, to some of the issues that were highlighted. If we are talking about people not knowing who is responsible for what across local delivery and there not being consistent communication, we would hope that a national system that is brought in in the right way, with better consistency, national standards and accountability, would help to resolve those problems.

From our perspective, we think that the national care service provides an opportunity to make the progressive change that is needed to give disabled people the support that they need to live the life that they want to live.

It is an opportunity for radical change. A lot of GDA members have said in response to the bill that the system as it stands cannot get any worse. It cannot get any worse than people not being able to shower for months on end or being told that they cost too much money or are too difficult for needing support to have their basic needs met. The bill does not have everything in it that we would like at this stage, and we would like to see secondary legislation that drills down on making sure that there is a charter that is representative of our rights and gives honour to the United Nations Convention on the Rights of Persons with Disabilities and the right to independent living; gives more detail about care boards and makes sure that there is representation of disabled people and their organisations on those care boards; and makes sure that accountability is specified, stating how it would be overseen on a local level to address the postcode lottery that was mentioned. Although the legislation as it stands is not perfect, we are hopeful that it and a national care service would give rise to a new system with proper legislative back-up that could stop the human rights breaches that we see at the moment and give disabled people the support that they need.

11:30  

Yes, legislation could help and could be the answer—well, it cannot be the answer on its own, but it could be part of the answer. Certain things would need to be put in place, and the architects of the bill would need to focus on much more than the structure.

As if the national care service was not complicated enough on its own, there is other legislation being developed that will affect people with learning disabilities in particular, for example, although not just people with learning disabilities. There is the human rights bill, the learning disability, autism and neurodiversity bill and the review of the mental health legislation. It is complicated, but it is important that those four bits of legislation be properly aligned. For example, the human rights bill will place duties on states parties to protect the rights of disabled people to live independently, so that is going to impact on the national care service. The learning disability, autism and neurodiversity bill will almost certainly establish the post of a commissioner, and that commissioner might have a role to play in the scrutiny and accountability of how the national care service is delivered. That is why the teams developing the four bits of legislation need to know what one another is saying. At the moment, I am not sure that that is happening as well as it needs to.

It is a highly complex task, and I am not minimising it in any way. The four bits of legislation together could well make a difference, particularly around accountability, but they need to align, help one another and not get in one another’s way.

Mike Burns, is the National Care Service (Scotland) Bill the instrument that we need to deliver that consistency of care across Scotland?

I would argue: if not this bill, what, and if not now, when? We have a system that, from a social work perspective based on my nearly 30 years in health and social care, people tell me is broken. I witness that daily. I do not meet anybody in the field who does not tell me that change is required.

My colleagues have talked about some of the previous legislation very well. We can take SDS as an example and look at it from a case study perspective. SDS is still delivered on a time-and-task basis, but we desperately need to move to an outcomes focus—we need to work alongside people and measure the outcomes that they need from their package of care, and that needs to be done on a human rights basis.

The Granite Care Consortium in Aberdeen is the only place in the country to be doing a whole-place test of change, and we are trying to bring all those things together. Even then, we still face large unmet needs. We are looking at how unmet need, and the people to whom care and support is delivered, can be risk assessed. We are doing that within a system that, at the moment, is disparate. Health sits as one part of the equation, with local authority in-house or long-arm care providers as another element and the third and independent sector as a further element. We have successfully brought all those together in the test of change. I would argue that that is a forerunner to what Derek Feeley tried to describe in his report. That is what legislation on an NCS would help us to create.

I believe that this is the time for legislation. If we do not grasp the opportunity now, we will end up tinkering with something that is broken and just end up with another patch-up job on a system that needs to be integrated.

Stephanie Fraser, is the bill the instrument that we need to address the issues that you mentioned with policy frameworks not being implemented all over the place? Will the national care service proposal help us to garner things together and deliver the outcomes that we all seek?

The short answer to that is that, given the outline of the proposed bill, it is difficult to see where that would be. We absolutely welcome the drive to ensure consistency of social work and social care services, but we are wary of there being too much centralisation. If the establishment of a national care service is just another layer of bureaucracy that service users have to navigate, it will not improve quality.

I already mentioned that there are national standards. We need national standards, and we need to hold people to account for implementing them, but services are local and are delivered locally. Social Care Future’s definition of the purpose of social care is this:

“Don’t we all want to live in the place we call home with the people and things that we love, in communities where we look out for one another, doing the things that matter to us?”

The bill seems to start with the structure and the formality at the top. I argue that we need to start with the person and those around the person and then build up. The bill does not do that, and that is why a local element is vital. We have to remember that community assets and third sector organisations can support people who do not need formal regulated care services to find appropriate support without drawing on formal services. That underpins all the formal structures that we see in the bill. I am very disappointed by the bill, and I am not convinced that it will deliver the change that all of us want.

I have a question about accountability. Last week, the minister said that, very often, he fields questions in the Parliament but has no accountability for many of the issues that are raised with him. Do you agree that national accountability is needed at ministerial level? I would appreciate a simple yes or no so that other colleagues can ask their questions.

Yes.

Yes.

Yes.

Why is the Cabinet Secretary for Health and Social Care not accountable at the moment?

The legislation does not point in that direction, I am afraid. It is about local accountability, so there is accountability.

He is the Cabinet Secretary for Health and Social Care.

Yes, but he is not legally responsible. Local councils, IJBs and so on are responsible. That is where the accountability currently lies, which is perhaps why we have a disparate position. Should he be accountable?

Yes.

Good. Thank you.

We have quite a few questions to get through. I ask colleagues to direct their question to somebody initially, and witnesses should put an R in the chat function if they have something to add. I definitely want to hear from everybody, but if we keep going around everyone for all the questions, we will run over time quite considerably.

Given that we are short on time, I will ask some yes or no questions, too. The Social Justice and Social Security Committee has also been looking at the bill, and part of our work has been on the charter of rights and responsibilities that will be created. I welcome that, but one of the concerns is that the charter will not necessarily be legally binding. Should it be legally binding? We can have a yes or no answer.

I will give a cautious yes.

Yes.

Yes.

I, too, give a cautious yes, but I make a plea that we separate rights from responsibilities in the charter. There should be a charter of rights, because the rights that we are talking about are human rights and are not conditional. When we link rights with responsibilities, it suggests that people are entitled to their rights as long as they behave responsibly in a certain way. It might be the case that people who access support have responsibilities to behave in a certain way, but there should be no suggestion that folk might not be entitled to their human rights if they behave badly.

That is a very good point.

The Health and Social Care Alliance has suggested that there should be scope in the bill for the creation of an independent authority to hold ministers to account for their decisions, as we have been discussing. What are the witnesses’ views on that? Do they support that call?

The problem with the bill is that there is no detail or structure, so it is really difficult to understand what will happen from the vague text. It talks about the Scottish ministers being held accountable for securing

“improvement in the wellbeing of the people of Scotland”.

That is a massive thing. If I was trying to draw up the key performance indicators for that, I do not know how you would hold ministers to account. The problem is that we need to see clear lines of local and national responsibility. I would argue that, if the only accountable officer is a Government minister, that is too far removed from the everyday experience of individuals. A lot of the issues could be solved by having the right to independent advocacy and mediation at an earlier stage. That is integral.

We will move to Marie McNair, who joins us online.

I thank the witnesses for giving us their time this morning.

I have a few questions. What have been the impacts of the integration joint boards, and has there been enough time for that model to bed in and make a difference? What are the implications of replacing IJBs with care boards? You have spoken about that already but perhaps you would like to comment further.

I will put that to Mike Burns first.

Good morning, Marie. I mentioned earlier that I was part of the strategic planning and development of IJBs in 2014 and 2015. If I look back on that from the perspective of the health and independent sectors, I think that we ended up with, in some ways, a power grab. The voices of people who receive the services were not reflected in the establishment of IJBs. If you look at IJBs across Scotland, you will see that we have third and independent sector representation in some of them but not in others. The legislative framework was not robust enough to ensure an equal voice at IJBs.

IJBs have not succeeded in their mission and vision. Hopefully, if we establish an NCS with care boards, the boards will learn from that and address some of the deficits that we have around IJBs.

Thank you, Mike. Does anyone else want to comment further? I know that a lot of that has been referred to already.

It does not look as though anyone else wants to come in on that.

Okay. Do you recognise the situation that the minister described last week? You have said that people feel as though they are being pushed from pillar to post if they have a complaint or concern. A lot of that has been discussed already, but I just throw the matter out there in case anyone wants to expand on what has been mentioned.

Sophie Lawson, I am sorry to put you on the spot, but do you want to comment?

Yes. There is massive inconsistency. We see recurring examples of GDA members constantly being pushed from pillar to post, particularly when they are navigating different areas that do not join up, such as those that have been highlighted by Stephanie Fraser and others, including going from SDS to an OT assessment.

There is a lack of transparency about what support is available. For GDA members in particular, there is no accessible information about what support is available. Sometimes, they are speaking to people in social work who do not themselves know what is available and they are then referred to community navigators or people in our organisation to give them further advice. We hope that an NCS would help with that, as there would be consistent information nationally and a bit more transparency about what services are available.

As part of our future visions project, we have been testing a community navigator model, which is essentially a person who works with a disabled person, looks at their needs holistically, takes them through all aspects of their social care needs and does that work for them. We are finding that people are not able to navigate that complex system and all the different people they need to go to when they are pushed from door to door. Also, there is no accessible advocacy support or a local complaints process—it is all internal—to help them through that journey.

11:45  

Thank you, Sophie. Does anyone else want to come in quickly?

Stephanie Fraser and Mike Burns want to come in.

I want to address the issue of complaints. We worry that local accountability could be lost if complaints services are nationalised. Our experience shows that, too often, the only way that people who experience inadequate care and support can seek change is to make a formal complaint. However, when they do, they are passed from pillar to post, with professionals trying to justify why they have done what they have done, rather than seeking to understand why the complaint was brought in the first place and to seek a remedy. We would like service users and service providers to be provided with an opportunity to work together to resolve the issues at the earliest possible stage, rather than their having to go down the route of using a complaints service that might take lots of time and resolve absolutely nothing.

Access to advocacy and mediation services should be a first step and those services should be available to all service users. We note that section 13 of the bill states:

“The Scottish Ministers may by regulations make provision”

for

“independent advocacy services”.

There is a lottery around which condition you can access advocacy services for. For example, people with a learning disability have a statutory right to access such services but people without a learning disability do not. We call on the Government to make the right to access independent advocacy available to people with cerebral palsy and their carers, and we would like section 13 to be amended to read, “The Scottish Ministers will by regulations make provision for independent advocacy services”.

I strongly support Sophie Lawson’s community navigators, which is an underchampioned role.

One of the issues that we have—this is a fundamental issue of integration—is that, when you look at people’s needs in a social care holistic—[Inaudible.] Cerebral palsy is a good example of that. A person might need physiotherapy to stay well, for example. However, that is immediately seen as a health issue, the person is sent down another route and they have to start again in order to access that physiotherapy, rather than that being seen as an enabler in the way that others might use regular exercise, a gym membership or something like that. There is a lack of understanding about what input for people’s condition will make the biggest difference.

Thank you, Stephanie. We are pushed for time, but Mike Burns and Andy Miller want to come in. Please be brief, if possible.

Yes, Marie. One of the successes that we have achieved on those issues through the test of change in the city of Aberdeen is that we have social care managers, social work social care managers and service providers working alongside each other doing risk assessments. Those risk assessments are often a way to prevent some of the complaints from coming forward. With that integrated working, the number of complaints that we receive or the issues that we have to deal with has been greatly reduced. That is just one example of what we think Derek Feeley is talking about, and we have made that happen in that test of change.

I will make two very quick points. First, a lot of people with learning disabilities have said that they do not know what standards of care or support they are entitled to expect, so they do not know whether to make a complaint if they are unhappy. We think that the national care service should have a national programme to communicate people’s human rights and the right to receive support that meets the health and social care standards.

Secondly, I echo what Stephanie Fraser said about the lack of independent advocacy. Research that we carried out a few years ago showed that the provision of independent advocacy was inconsistent and insufficient across the country. Investment in advocacy is mentioned in the financial memorandum.

Thank you, Andy. I have no further questions, convener.

I again remind everyone that it would be good if we could keep our questions and answers succinct. I also reiterate to members that they should direct their questions to one person to start with, and I remind witnesses that they can put an R in the chat function when they have something additional to share.

Trade unions and local authorities have expressed concerns about a potential wholesale transfer of staff and assets to a new directorate, essentially. However, the minister set out a different direction of travel when he was at the committee. He said that any transfer of assets or staff to the provider of last resort would be only in the event of a care home failure or a service failure.

What is the current situation in terms of the provider of last resort? How would the national care service change that in light of how the minister set things out? I will come to Mike Burns first.

Good morning. GCC is a really good example of that. In the city of Aberdeen, we had one provider of last resort—the local authority in-house provider. We now have GCC, which is a consortium of independent and third sector organisations that delivers to the whole city. In fact, we deliver to almost three times what the local authority in-house provider delivers to, which would also be the case as the provider of last resort.

I know that the big question that is being asked about the potential transfer is around pensions and suchlike, but there is a three-tier structure at the moment. We must look at, understand and do something about that structure if we want to provide balanced and equal delivery of care across Scotland. National health service staff, local authority care staff and third sector and independent organisations are paid out of that one pot of money. However—I hate to say this—they are all paid differently for delivering exactly the same standard of services. As Feeley pointed out, some of the best care that is being delivered is by the third sector. There is a disparate position that we have to address. I take on board some of the concerns about the transfer of those staff, but there are ways to look at that. We in GCC have proven that there are other ways of achieving that outcome.

In reality, the answer to your question is that family, friends and unpaid carers are the real providers of last resort. They are unidentified, invisible and unsupported. When things fail, families are made to feel an obligation to step in. An example is that, during the pandemic, many disabled adults had to move back into their elderly parents’ homes because they could not access community support to live independently.

Family and unpaid carers are not treated as equal partners in the care of their loved ones. They are often not listened to by professionals and not supported to navigate the system. Yes, in theory, there are support networks—local care centres and general practitioners, for example—but some people do not class themselves as carers and therefore do not access the support. So, who is the carer of last resort? In reality, every day, it is family and unpaid carers.

Thanks for that.

This is my second question. The review of adult social care reported that

“Trust is not currently in plentiful supply in social care support”.

Do the witnesses agree, and do you feel that the situation is the same when it comes to national health service provision and, if not, why there might be a disparity in terms of trust not being there in social care settings but being there in health settings? That is for Sophie Lawson, first.

Thank you. I agree that there is definitely a lack of trust in the system as it stands. That is for a variety of reasons. Let us look at the cuts that have happened in Glasgow alone since Covid. There, 1,884 social care packages were cut from the outset of lockdown. Some have been partially reinstated, but many have not. People have, for the past two and a half years, faced extreme isolation, poverty and cuts to vital services. Even before Covid, during austerity, we had in Glasgow policies such as equalisation, which was, essentially, cutting social care packages by saying, “This is being done to equalise, so your neighbour down the road will get something”. People’s vital services were cut to justify it.

As well as there being cuts, people do not feel heard or listened to. As I said, people are going for massive amounts of time without essential support and are being asked to choose between having a shower and eating that day because their carers are so pressed for time, so it is really difficult for them to trust the system, as it stands. National change is required.

On co-designing at local level, the trust that is required for people to engage does not exist because people have seen what happened in the past. They are aware that all the new policies that have come in, such as the maximising independence approach—which I will not get in to, for time’s sake—have done nothing for disabled people. They do not have faith in the system. A new national system that is based on co-design and that makes an effort to take lived experience into account is needed. That would offer new hope that for a better system than we have at the moment.

You will be glad to know that I have only one question, as my second one has been answered. The bill is, obviously, a framework. The next stage will be the co-design and co-production process. How would you like that process to involve you? The minister has already committed to working with people with lived experience. I will come to you first, Mike.

That is critical. Co-design and co-production have to be a central tenet in how we take forward the NCS bill. I go back to the example that we have in Aberdeen, where we deliver services to people with learning difficulties and older people, including personal care and mental health. We work in partnership with the health and social care partnership and all the other providers in the city. It is about having a conversation that must start with the people to whom you deliver services. They need to be an important part of that conversation. In Aberdeen, we have had co-design and the concept of collaborative commissioning. That is a central tenet of what Derek Feeley said.

I do not know whether anybody else wants to come in on that; it is a really important part of the process. We have talked about the framework and the next stage.

I agree that co-design is critical. It is heartening to see the commitment to co-design from the NCS team. In practice, it is very challenging to make co-design properly inclusive. We need to make sure that people with learning disabilities are included in the co-design process; that is challenging, but it is very important.

Structures have been set up for co-design: for example, we have set up lived experience panels of people who use social care support. However, we are concerned that that is not an accessible model for people with learning disabilities, so we need to keep the conversation open. The NCS team needs to keep listening to what is working for people with lived experience and to ensure that they are properly involved all the way through.

The timescales are artificially short in order to get the legislation through in this term in Parliament, which will compromise the effectiveness of co-design because people who take a bit longer to make their contributions will be cut out. That is our fear.

I associate myself with everything that Andy Miller has just said. Our concern is that the process is the wrong way round—

Stephanie—I am sorry to interrupt, but I think that we heard that in evidence. In the short time that we have, the focus is more on what you would like your involvement in the process to be. I am conscious of the time.

In the interests of time, I will absolutely echo what Andy Miller said: the issues are the timescales and that the lived experience panels and so on are not fully inclusive and representative.

I will maybe take that up with you afterwards.

I will be very brief. I echo everything that Stephanie Fraser and Andy Miller said. Co-design is really important, especially as we go into producing secondary legislation. It takes time and resources, but it is a really valuable and important step. People have touched on the lived experience panels. From our perspective, we need to make sure that there is a collective voice guiding things. That means disabled people’s organisations having a mandate to speak in the process of co-design and it means having capacity built in to the process to make participation more meaningful.

Thank you, Sophie. I have no further questions, convener.

That brings us to the end of our questions. Thank you so much for keeping the answers short. Stephanie, I noticed that you were cut off when you were saying something that might be important to convey. If you would put that in writing, I would welcome it.

Thank you for joining us this morning. It has been useful for the committee to hear from all of you and to hear the various perspectives.

I suspend the meeting for five minutes to allow for a change of witnesses.

12:01 Meeting suspended.  

12:06 On resuming—  

We come to our second panel of witnesses. We are joined in person by Adam Stachura, who is head of policy and communications at Age Scotland. I might have mispronounced your last name. Online, we are joined by Henry Simmons, who is the chief executive of Alzheimer Scotland, and Hannah Tweed, who is the senior policy officer of the Health and Social Care Alliance Scotland. I welcome our witnesses to the meeting. If those who are online indicate that you want to respond by putting an R in the chat box, I will make sure that we bring you in. Members will direct questions to start off.

I will begin by directing my first question to Hannah Tweed. This might be a question to which we get a response from all of you. I am interested in hearing the main problems with how social care is currently delivered. Do you agree that there is a postcode lottery in care delivery?

The short answer is yes. As was ably covered by the previous panel, there is a wide variety of evidence available about the ways in which condition-specific and area-specific delivery of care varies, irrespective, in many cases, of actual need, which is what it should be grounded in. We have a variety of material from work that the ALLIANCE has done, in partnership with Self Directed Support Scotland, on people’s experiences of accessing self-directed support and social care, which has really highlighted the range of variation.

Some areas have notably poor access: I highlight folk with experience of sensory loss, mental health problems and people with learning disabilities, as Andy Miller mentioned. That is partly reinforced by care charging and the eligibility criteria that are used across Scotland.

Information sharing informs that. When we did the “My Support, My Choice” project, we found that only 42 per cent of respondents had had social workers describe all four options with them in reviews. That is, in part, grounded in the fact that social workers are not empowered by having information to share, so people cannot make a suitable choice. They might not choose the best care provision for them—and that is before we get into the terms and conditions of specific problems with individual providers in some areas. I will pause there, because I am sure that there is a lot more that colleagues can say.

As ever, Hannah Tweed has done a very good job of summing up the position exactly. There is a significant challenge. Age Scotland hears about delivery of social care from older people, their families and their carers. That is not new; it is not something that has occurred as a result of Covid-19, but has long been the position. As a charity, we have been very careful not to use the phrase “Social care was in crisis before Covid”, but—my goodness!—it is now. We need to be very careful when we use that phrase because it cannot keep becoming a bigger and bigger crisis.

As we have heard in the past week from representatives from social care, the system is potentially on the verge of falling over, with large closures on the cards for care homes. That will be crucial in terms of people’s wellbeing. What happens if people cannot live in their own home, which is their care home? People will face incredibly long waits to receive, first, assessments for social care then, secondly, the package itself.

There was a series of good freedom of information requests from Helen Puttick of The Times at the beginning of the year, which she discussed with us. The responses outlined extraordinary waits of years for some people to receive their social care package. The clock stops when the person gets the first part of their care. People are waiting 1,200 days in Perth and Kinross, and their outcomes are incredibly poor. The answer to the question is yes.

However, to go back one step, I note that at Age Scotland what we often hear from people on our helpline and in our projects on the ground is, of course, the worst of it. There is a lot of great social care. As members of the Scottish Parliament, you will hear all the time about that being delivered in your constituencies and regions, but there is a significant challenge in getting good care and getting enough of it. It was mentioned by a previous panel member that a person’s care being reduced to meet budgetary or capacity needs means that outcomes for that person are far poorer than they should be, particularly in terms of their human rights.

Thanks for that. I ask Henry Simmons whether he has anything to add.

We cannot hear you, Henry. Hang on a minute. I am not sure what is going on. I will ask my other question while you are trying to figure that out, and we can come back to you once we get your audio sorted out.

The committee has had evidence sessions on the national care service, and we have heard from previous witnesses that the bill is a disproportionate solution to the challenges that we face. I am keen to hear your views on whether we need legislation to bring about improvements. I will start with Adam Stachura.

We are in a position in which legislation is what we have got. If you look across the piece in social care, you will see how disparate it can be for those who receive it and the different systems that are in place. Everyone has talked about hearing from people who receive social care or their families about the postcode lottery. We have a huge number of differences in the approach of integration joint boards, health and social care partnerships, the NHS and local authorities. The bill is a helpful step. If you are going to try to reform social care, you probably need a useful mechanism to do that, and legislation will be it.

Underpinning all of this is accountability and responsibility for social care. I listened to the previous panel session, during which a question was asked about the Cabinet Secretary for Health and Social Care having responsibility for that. My goodness, that is exactly the type of thing that we need from the Scottish Government, so that it is not in name only. If you go back to the beginning of the Covid-19 pandemic and the instances of people’s social care packages being removed—people were told that they would have to go without and were waiting days in their beds without being fed or washed or getting any of the things that they needed—you will see that nobody was held accountable for that.

Although that happened in a crisis, it demonstrated the absolute necessity of accountability. The Scottish Government had no levers to fix the issue, and local authorities, IJBs and health and social care partnerships were wholly remote from public accountability. If we have that underpinning responsibility in the health system, we should have it in the social care system, which is equally necessary to the wellbeing of those who receive care.

Trying to reform social care is important. That will mean many different things to many people, of course. A lot of it will be about money and resources and how those are used effectively to get the best outcomes for people. A national care service has been proposed, and we whole-heartedly support such a thing, at least in its broadest concept, but I want to bring it back to accountability and responsibility, which are massively important, and doing so through legislation, as much as anything else, is vital.

12:15  

I agree with Adam Stachura’s comments. There are parts of the system that we can work on to make improvements outwith the legislative framework. That should be happening, but that is not a fix-all. We know that the structure of, say, the SDS legislation does not deal with the problems that we have with eligibility criteria, which are some of the most pressing reasons why people do not receive early intervention care and why the point of crisis intervention is reached. I use the word “crisis” very specifically, because it is frequently the case that people are in crisis by the time that they get access to social care.

Legislation is not a fix in all ways—in particular, the ALLIANCE and our membership have concerns about the framework bill approach—but there are things that we would wish to see changed in primary legislation, and I will say more on that later. However, I will give an example of legislative protections that worked well when there were problems with accountability during the pandemic. Some local authorities temporarily suspended their complaints systems, which was not in line with their duty as public bodies. I assume that that was down to ignorance and a relative lack of support for extremely overworked individuals—I am not trying to knock front-line local authority colleagues by saying this—but, functionally, they were not fulfilling their statutory duties.

When that was raised and aired with them, the problem was dealt with pretty promptly, because there was legislative accountability and processes in place to say, “That’s not great, and here’s why.” It would be beneficial to have something that could provide similar assurances—if it was done right, which is a pretty significant codicil.

I will try to bring in Henry Simmons again. Henry, can you respond or add anything from the Alzheimer Scotland perspective on the problems with the way that social care is delivered and the postcode lottery piece? Do we need to legislate to bring about the improvement?

Can you hear me okay?

Yes, we can. Fantastic.

Apologies—I do not know what happened there.

I will first answer the question about the necessity. There is no doubt that, as a country, we are still reeling from the changes that were made in 1996, in the days of regional councils. We have never quite been able to deliver consistent variation across the 32 local authorities when it comes to effective social care. With dementia, we are faced with a challenge on a large scale, and everyone has told you today about how difficult it is to access good-quality social care across the piece. Some big strategic plans have been made over the past 12 years, particularly on dementia, such as the national dementia strategy, which has 35 to 40 commitments, but all those commitments rely on local delivery and very few, if any, have been delivered consistently.

I can understand the situation from both sides. I can understand the point of view of a local authority that is dealing with its issues and trying to work out how best to serve its communities and deal with the challenges that it faces. We then have a Government that is putting together some of the best and, perhaps, most comprehensive and innovative policies on dementia that could be on the table. Those two sides do not weld well together. We have national visions, strategies and agreements that would transform the lives of people with dementia from the point of diagnosis through to integrated and advanced care, but those have never really been delivered.

Therefore, if you asked us whether those strategies should come under the governance and direction of a national care service with care boards that are working to a consistent framework to give everyone the same quality of care across the piece, we would say, “Yes, that makes an awful lot of sense.”

To date, what we have been trying to do has been difficult. With the IJBs, we have brought together two types of sovereign bodies with little funding to meet a need that is already out there. Right at the start, IJBs were about saving money and trying to make the best use of resources, but they have never reached the point of doing meaningful prevention work. The point that Derek Feeley highlighted that we are very supportive of is about the sense of moving forward and thinking about prevention earlier. Even in a time of crisis, we need to move everything forward and think through how to avoid many of the difficulties that we experience now. That has to come from a national perspective, driven through care boards to local people.

Thanks very much. We will move to questions from Willie Coffey.

Good afternoon to everyone on the panel. I want to go back to Derek Feeley’s report. One of the key stand-outs for me—I have read it many times—is the point that the driving focus should be

“consistency, quality and equity of care and support experienced by service users”.

That is at the heart of the Feeley review. Is the national care service the instrument to deliver that consistency of service across Scotland? I ask Adam Stachura to pitch in with an answer.

It could be. Obviously, detail is lacking on what will actually happen in a lot of areas. The service is being co-designed, and there will be co-production underlying the secondary legislation. The lack of consistency is highlighted when anyone comes forward to say that they are receiving poor social care, or not receiving it at all. That is not meant as a criticism of those who are delivering it because, across the piece, consistency is lacking for those who work in social care, as well.

The previous panel mentioned that there are different terms and conditions for doing the same type of work, depending on who has been commissioned to undertake it. Some suppliers, or suppliers’ providers may have to withdraw entirely from delivering social care because it is not financially sustainable. Before the latest round of the energy crisis, care homes were closing because of the financial model. Care is an expensive business, and good things cost money.

However, the national care service is important. Feeley was absolutely right in the report. We need to look at who requires care, not just now but in the future, whether they are a child, an adult or an older adult. The population is ageing, and every one of us who may need care expects to have something that meets our needs. Feeley was absolutely right that the care is not consistent. The care service could do all those things but, of course, the devil will be in the detail. We do not have that detail right now to scrutinise it properly.

Can I have a brief comment from Henry Simmons and Hannah Tweed? Is the national care service the instrument that we need to deliver consistency across the country?

The truth is that there will be variations in performance. In the national health service, for example, we do not see consistency, despite having very clear directions and guidance. Performance is always an issue, and there will be different management and so on. However, we will have consistency of principles and standards and, I hope, consistency of rights and expectations that can be delivered and measured.

Given the challenges of building any social care structure on this scale, we will always see a degree of inconsistency. However, if you ask me about the values, principles and the point about driving forward, my answer is that yes, we need a national care service that has all that up front. That should determine the structure that comes behind it, and then the performance and delivery will need an awful lot of in-depth monitoring to ensure that we achieve consistency.

I echo Adam Stachura’s conditional response and that of Henry Simmons, if I can summarise it that way. If I were getting into the Ts and Cs, I would say that a national care service potentially has more organisational capacity to do that in certain areas when compared with current systems. However, I am not sure that that is the same thing as saying that the National Care Service (Scotland) Bill provides that.

The issue of data collection was discussed with the previous panel, particularly in relation to the problems with the flags that are used for people with learning disabilities. A national approach to data collection could provide proper intersectional analysis of different population groups and how they access social care, as well as something that is outcomes focused and managed nationally, so that the same questions and data sets are compared to highlight where things are working well and so that good practice is shared and problems are highlighted. That could be a key useful aspect of national analysis, alongside the local delivery part, which is also important and has been raised by colleagues. If you do not have such an approach, you do not know what you do not know, so you cannot deal with the problem.

I agree that there are clearly issues with varied provision in the NHS, but the NHS does not vary its eligibility criteria in different local authorities, whereas social care does. There are, therefore, areas in the current system where there are clear distinctions in practice and, bluntly, where there are not human rights-based approaches by default. Section 1 of the bill, which prioritises human rights-based approaches, is welcome, and it could result in that playing out in a more equal fashion. However, we need more detail, please.

I have another question, which I asked the previous panel and which is on accountability. Do you agree that ultimate accountability should rest with a cabinet secretary in the Scottish Government? I see that Adam Stachura is nodding.

Ministerial accountability is a good concept. It is useful for organisations not to mark their own homework, if I can put it in those terms. At the moment, we hear again and again that, when people submit a complaint, they are not sure who is dealing with it, that the transparency is not there and that they do not know where to go if they have not got anywhere. Something that is more devolved has its benefits. However, we question the longevity of some of that and whether there also needs to be a system that ensures that party-political change does not affect people’s access to accountability structures.

I think that that reflects what the public feel to be the case at present. If you look at ministers’ inboxes, you will probably see that lots of people write to them to ask them to solve all the issues and difficulties in social care. The general public tend to think that the minister is responsible for social care. The challenges of social care have been difficult for many local authorities and IJBs to deal with, so the transition has to be about inclusive engagement with everyone. Ultimately, this is the right way to go, and not simply because the current system is appalling. The public are keen for their Government to be responsible for the things that close to them.

Thank you, everybody.

Good morning, panel. Thank you for joining us.

It is my understanding that Lord Brailsford, the new chair of the Scottish public inquiry into the handling of the Covid-19 pandemic, will meet families today. I welcome that. Do you and your organisations feel that Anne’s law has been captured and embedded in the legislation?

I do not speak for them, but I do not think that, if you asked those who initially called for Anne’s law whether this is what they intended or needed, they would say that it is. However, getting all the different elements that are required is also a pretty complicated business. We are supportive of it and have been through the whole pandemic. The sad thing is that it is necessary at all but, essentially, people’s human rights were not being realised. What we did not often have was a system in which people were saying, “How can we make this happen?”, as opposed to taking an approach of defence, defence, defence, and people saying, “We’ll close the doors. We need to make sure the virus is stopped.” There are lots of good examples of that.

I do not want to drone on too long, but there are a lot of good principles in this. I know that there are legislative timeframes, but part of the concern is how long it will take for this to be realised. At a meeting a couple of weeks ago about the implementation of care home visiting, which I am involved in, we heard that there are still inconsistencies. Doors are being closed for different reasons, such as norovirus, so the law will be as necessary in the future as it was during Covid.

Covid is much better managed now than it was before. We are meeting in person and there are no masks, for example. We are in a much better place. There is a vaccination programme, and PPE is being used and is available. It is a sad state of affairs that we are still not in a place where residents, family members and carers are able to get exactly what they need everywhere. Until the bill is passed, that will not be law. Broadly speaking, it is doing the right things, but it is not as strong as some who have been calling for it would like.

12:30  

There are some fundamentally challenging issues associated with Anne’s law that we have to look at too; we cannot look at it in isolation. First, part of the reason why these relatives cannot access premises is the very nature, size and scale of the premises. We know that 1,600 people with dementia probably died as a consequence of living in large-scale, group-living environments. We have to ask whether that is the right model and the way to deal with a future pandemic. At the time when everything evolved, most people placed their trust in Public Health Scotland’s understanding of how to handle and deal with the pandemic. Very few people knew how to challenge that or understood what to challenge. The campaigners in the Care Home Relatives group have made the point, made their case and won that argument, and we can never go back on that now.

As it stands, the option comes back to Public Health Scotland making decisions. That needs to be challenged. There is other evidence. There is counter-evidence, and there are emerging strong theories—[Inaudible.] We are in a different place for a different debate. Public Health Scotland held all the cards and made all the decisions, but it never quite understood the impact that those decisions had on the families and individuals and it perhaps still does not. We need a bigger public debate about the future of that long-term care estate. We need to question and consider it. We can never have families in that position ever again. It is not just about Anne’s law—as far as we are concerned, it is about the whole position.

To build on Henry’s points, with which we are very much in agreement, I will say that it is imperative to take that learning from the pandemic about process, as well as about the specifics, and use that to inform the discussions. That could include discussions about the right to rehabilitation, the right to independent living and the way in which, consistently throughout the early stage of the pandemic, we did not see disabled people, people living with long-term conditions or unpaid carers having an input into decision making.

That has particular relevance to the proposed framework bill in terms of the material on care board representation and ministerial intervention in the case of emergencies. There is no statement about a duty to have respect for or pay attention to the principles of co-production or the principles of human rights outlined in the early sections of the bill. We would be keen to see that there, because that would be the functional threading through of some of the learning that has been referred to and of the impetus to not go back that colleagues have just commented on.

In its evidence to the committee, the ALLIANCE suggested:

“there should be scope within the Bill for the creation of an independent authority whose role is to hold Ministers to account for their decisions.”.

Can you outline what you see that looking like legally and what legal standing it would have?

I should preface this by saying that I am not a legal professional.

That is centred on the concept that it is important that people can trust the process. There needs to be trust in ministerial oversight—absolutely—but also trust that someone has the capacity to properly look out for what is and is not working. Ministerial accountability, with the best will in the world, will not involve one person, who is the cabinet secretary, having the capacity to go, “What is happening in the data that we are receiving? What gaps do we have? Where do we not know what standard of care people are receiving? What is being done to combat that? What progress has been made?” That has to be done by a team of researchers, bluntly, or some variation on that theme. Part of our proposal for the independent role in that is to support public trust in that process, but it is also to provide a useful resource that ministers can draw on as part of that ministerial responsibility role, as well as being held to account. The proposal is for a two-directional process.

It also harks back to some of the earlier comments on complaints. If you have an independent body, it can be part of a more proactive approach to problem solving, in the same way that, say, the Care Inspectorate’s reports highlight good practice. They are not all about saying, “We are putting you into special measures”—far from it. It is something that can straddle that space and be available for disabled people and for people who are accessing services to be aware of, but also for staff and the workforce, so that they can raise concerns and suggestions and flag items.

That is helpful, thank you. I do not know whether anyone else wants to make any points about that suggestion. If not, I am happy to hand back.

Nobody has indicated. Thanks, Miles.

I say again that members should direct their questions and allow the panel to indicate that they want to come in on that question. Please, everybody, keep your questions and responses succinct. We move to questions from Marie McNair, who joins us online.

Thank you, convener, and good afternoon to the panel. Thank you very much for your time.

I am going to follow the same line of questions that I put to the previous panel. Obviously, we want to know about the impacts of integration joint boards. I want to tease out whether the model has had enough time to bed in and make a difference. What are the implications of replacing them with care boards? I know that there has been a bit of discussion about that already, but could you expand on that a wee bit?

On the question of whether IJBs have had long enough, I do not have the same breadth of experience as colleagues who were involved in the 2014 set-up. However, we have clear evidence that they are not meeting the needs of disabled people, people living with long-term conditions or their carers on a consistent basis. Part of that is due to the legislative framing of integration. A key example of where I think that care boards have the potential to meet the problem is representation of lived experience and of the third and independent sectors, in that we see real variance between boards that do and do not have those posts in IJBs. Those that do may have the available post, but it is not filled, or it may be that, functionally, the order of business is 9 am meetings for which you have to read 50 pages over the weekend. We have frequently heard from people with unpaid carer responsibilities who say, “I can’t do a 9 am slot because that is when the support comes in.” Those are the nuts and bolts, but the current system is not designed to engage properly with people who have lived experience of accessing services.

If care boards are required from the outset to have people with lived experience on them in order for decisions to be quorate, that is a very different political landscape in terms of the language of co-production and input into decisions, which is a key part of that definition. We would like to see that fed through the whole process of wider health and social care design. Although it is very welcome that the bill, in its current state, acknowledges that possibility and highlights the possibility of paying people properly for their time rather than just giving them expenses, which is another problem in the current system, it is not listed as an essential. With the best will in the world, if something is not a requirement, it will be the first thing that goes when people are under pressure. That is something that we would really like to see changed in the structure of the bill.

If care boards can learn from things such as the people-led policy panel and the success of some of the really good work that happened around social security and co-production, that would be very welcome and could potentially be a much more meaningful engagement with co-production on an on-going basis than we see in IJBs.

I do not think that IJBs have worked. There are a number of very important and significant issues, some of which have been mentioned. One of the areas that I point to is that the process of commissioning and subsequent procurement through IJBs has led us on to the path of crisis in social care. Specifically, I highlight the non-committal framework tendering agreement that the IJBs have adopted across the country. I was fortunate enough to chair an inquiry on behalf of the Fair Work Convention. We looked very carefully at all this, and we made some recommendations in 2019, one of which was to see the IJBs driven through these framework agreements. Many organisations, and, indeed, many of the employees within them, carry the burden of risk and the burden of availability within social care. That, for me, is a failure of planning and of proper commissioning. That is what leads to organisations having zero-hour contract workers and not knowing how many hours of work will be required.

All that feeds into the willingness and desire of someone to work in social care. We have over 1,000 organisations and about 200,000 staff, 89 per cent of them women, and we do not have a collective voice for that group in the workforce at all. That is where social care has started to come under more and more pressure and have greater difficulties. That lack of significant planning, proper commissioning and making sure that organisations are given the right level of contract with the right number of staff to deliver the needs has led us to the crisis that we are in. That is one area that IJBs have struggled with.

I do not think that the cultures have ever really merged. They have a name, a logo and a label, but do we really have one culture among all that that was put into those individualised IJBs? Probably not. Moving forward, the idea of not having two different line management structures and two different reporting procedures, and having one national care service, seems to make sense, but there is a lot of work to be done in delivering that.

Do you recognise the situation expressed by the minister last week that people currently feel that they are being pushed from pillar to post if, for example, they have a complaint or concerns about the service? Do you share that view?

First, it is very difficult to find out who to complain to, how to complain or where to go. My experience of people is that they complain only when things get really serious and significant. I would certainly support that view. That is a fair, true and accurate reflection of what is happening just now.

Very briefly, does anyone else want to come in on that question?

I will be brief. If you look at accountability for IJBs, you find that there is not that much interest among the public. If you ask the public who are on the IJBs and what they do, you find that there is very little understanding. A report from Audit Scotland a couple of years ago stated that they had not worked?yet. So there is a question about whether they need more time. However, do we have time to wait for that? Will that in itself fix social care? That is such a broad ask. To fix social care is pretty tricky.

If you are going to look at a national care service, there is a model to support that through care boards, but, despite a lot of good work by the IJBs, their commissioning work has been a race to the bottom in terms of the cheapest costs for people to procure care. There is a lot more that they could do, and I do not think that we have time to see whether that settles.

Hannah, I see that you want to come back in on the question of people being moved from pillar to post.

Yes, they are, but one specific area that I would like to flag?often, not a lot of attention is paid to this?is the need for a complaints system and redress to be accessible to the family and friends of people who had accessed or wished to access care and have since passed away. At the moment, in the current system, investigation essentially ceases in many cases after an individual has died. That is not fair on those families, and is not fair on those individuals. It also sets a poor precedent in terms of learning and the ability to build on situations when things do not work. We would strongly welcome material that would alter that current state of play.

Thanks, Hannah. No further questions, convener.

12:45  

Thanks for flagging up that aspect, Hannah.

We have heard concerns from local authorities and trade unions about the prospect of a wholesale transfer of staff and assets to a new national service. Last week, the minister tried to allay those concerns by saying that it would only be a provider of last resort, in the event of a failure. What has led to that level of confusion? Why was there such concern in the sector about a wholesale transfer of staff? What would be your view on that if it came to pass?

I am responding on the hoof, but I and a number of colleagues had not read the bill in the way that has since been outlined by the minister. The understanding had been that there is the possibility of wholesale movement of staff, and that caused understandable concern, particularly, among other areas, the sections where it was explicit that NHS staff would not be moved. That led to a question about what it would mean for NHS Highland, which provides social care for adult services. There was significant confusion among third sector colleagues about those sections.

If, as the minister outlined, the transfer of staff will happen only in an emergency, I would return to my comments about being clear on the definition of an emergency and on the length of time—whether it is permanent or short term—and how the human rights of people accessing services and of the workforce, with fair work embedded throughout, will be respected throughout any such process. Material on that would reassure people because, at the moment, there is considerable uncertainty in a sector that is already coming under considerable pressures, and stress is not a desirable addition in that context. Does that make sense?

Yes. Thanks.

My other question is about trust. The review report said:

“Trust is not currently in plentiful supply in social care support”.

Do you agree with that? Do you recognise that there is a difference between trust in social care and trust in the NHS? Why do you think that might be?

There is certainly an issue of trust on both sides—those who receive social care and those who deliver social care. A lot of folk, such as key workers in social care, might have a lack of trust in the system or maybe even in their employers or in what they are getting themselves, including their pay, conditions, training and all the things that support the system. There is an extraordinarily heavy burden on unpaid carers to pick up everything when it comes to making sure that their loved one is in the best health possible.

If you look at the past two and a half or three years, you will see that social care has probably had the worst period of public relations it could ever have had. That is not for the want of trying to do a really good job; it has just been faced with a crisis. At the beginning of Covid, care homes and social care providers were left on their own to try to find PPE. We have heard those stories and cannot forget them. People were going on Amazon to try to find anything, but it was channelled, broadly speaking, to the NHS.

It might come out in the wash after the independent UK and Scottish inquiries how those things happened. The response, and what happened in social care, meant that social care was hard to deliver because of those types of things. We are talking about trust, and it certainly felt like the NHS was protected far more than social care. There is an incredible hangover from that. People had their social care packages removed with no warning, or, indeed, those packages were not returned to levels that were initially assessed as their need. It is not just about what people get now. At some point, they have been assessed as needing a certain amount of care and then, all of a sudden, they no longer need that much care.

There are big challenges, and a lot of it is about resource and making sure that people can access as much care as they need when they need it.

Henry Simmons would like to come in, and he wanted to come in on the previous question as well, so if he could pull those together, that would be great.

On the trust issue, it is important to understand that the majority of the public get a surprise when they start to require social care services, because they end up in a form of financial assessment and have to contribute to paying for them. That has been very varied across 32 authorities, particularly for our group of people, who we are most concerned about. When they reach an advanced stage of dementia, they might need to go into a care home. They then face bills of £1,200 per week. They think that care will be free—the public generally think that care will be free. When people enter the social care arena and realise that it is not free, that obviously affects their perception of it. We have a kind of damaged psychological contract: you work for your whole life, but when, all of a sudden, you need something, you have to pay for a component or all of it. That really impacts on trust, whereas you never experience that with the NHS; you tend to receive the care that you require, albeit that you may have to wait for it for some time in various situations. We have two very different approaches and structures but a similar perspective on them and, ultimately, that leads to significant damage to trust. Indeed, we have a campaign, which I will not go into now, to target inequalities in that. It is something that you must bear in mind, however: social care has always had a means-tested charging ability that makes people very confused and causes a failure of trust.

I have a couple of questions. We talked in the previous session about the framework element of the bill. I will move on to co-design, which is the next stage. As we move forward, what would the panel members like to see their part in the co-design process being?

My second question is this. The minister mentioned last week that

“the national care service probably represents the greatest opportunity that has existed for the profession for a very long time”.—[Official Report, Local Government, Housing and Planning Committee, 15 November 2022; c 35.]

What are your thoughts on that comment? I will put that to Hannah first and then open it up.

First, the ALLIANCE is very interested in being involved in co-production work so that we can share as many opportunities as possible as widely as possible with our membership. The feedback that we have had from our members thus far is that, although many of the existing structures around co-production are really good, they are not transparent. That goes back to the questions of trust that have just been outlined. We could also see on-going improvement in inclusive communication and access for specific population groups.

When you say “not transparent”, what more transparency would you like to see?

Off the top of my head, it is welcome that you have the lived experience expert panels but, from the information shared, it was not clear whether those were selective or whether everybody who wanted to be involved would be involved. It is about basic comms, essentially. A lot of information is shared online only: what does that do for digital choice, digital access and the population groups who will just not hear about stuff? There is a lot of material there.

We have also heard concerns from our membership about the timescales, particularly given the developments across mainstream national care service work and the questions about whether to include justice services and children and young people’s services. There are real concerns about making sure that we do not retrofit and that children and young people’s services are included, because a retrofitted system will not be fit for purpose or properly co-produced. It is about making sure that that co-production work is fully inclusive of all potential groups from the outset, because universal accessibility is no bad thing, even if parts of the system are not included in the end.

On opportunity, the mentions of fair work are welcome, but not having a lot of detail has raised some concerns. There is potential for this to be an opportunity. Yes, we know that there was a pay uplift for social care staff, but a pay uplift does not come with an on-going promotional track, as the NHS offers, so something that could do that would be welcome. Similarly, that uplift did not apply to children and young people’s social care workers, so some existing disparities are being perpetuated. Can that be addressed? We have also heard substantially from colleagues in the sensory loss sector, for example, who talk about the expertise that is required to be a guide communicator. That is not noticed or acknowledged in the current system, even in continued professional development or in pay and conditions.

There is a lot of scope to improve. Whether the bill will improve those things is another question, but the opportunity is welcome, particularly if there is a drive to get into the nuts-and-bolts stuff and see meaningful improvement for the sector.

The national care service needs to have alongside it an agreed body that represents the social care workforce. We need standard terms and conditions, and we need to move away from the variation that we have across the whole sector and give people a sense of security. Again, that was recommended by the Fair Work Convention’s report, but it has not happened yet, and it really needs to happen.

It would be very difficult to co-design the next stage of the bill without including everyone. It has to be chunked into specific areas and bits of work, and people need to be brought in and engaged with from the beginning, but perhaps in more depth across different pieces. For example, my organisation has been campaigning and working with members for 40 years. We have many thousands of members and we have active voice groups, and they all want to be part of the process. We have to find a way, at the right point in time, to use that skill and expertise and to use and rely on the third sector, which exists to do the very thing that the Government now wants to be done. I do not think that the Government needs to create a new methodology of co-production. We have been doing this for decades. There is a lot to learn from our sector, and we can do a lot more in partnership as opposed to creating new structures—[Inaudible.] There are a lot of organisations out there that can be engaged and supported. However, that requires some investment, funding and thought.

The first part was about involvement. There is a lot of insight from older people, carers and family members that Age Scotland’s helpline will have collated over many years. The helpline advisers will know what people are calling about in terms of what is good and what is not so good. That is something that we would want to offer for the general public take on it. We also have elements of work that are there to support people who have experience of dementia. We need also to include ethnic minority older people and LGBTQ+ older people and make sure that their voices, experiences and aspirations for social care are heard. It is as much about the future as it is about today. The national care service will not fix tomorrow the problems that we face in social care today but, looking into the future, we want to make sure that, as more people need care, whoever they are, whatever they might need and wherever they are, that is fully recognised and understood.

It is for organisations such as Age Scotland and many others to test and scrutinise the ideas that come out of the co-design and co-production processes to work out whether we think that they will work. That is another issue. Often the Government will say, “Let’s take a blank piece of paper, all come together and create this thing”. Sometimes, you want a little bit of leadership from the Government and for it to say, “This is how it will work in practice. This is the framework that we have and this is how the world operates. What do you think could improve that? Where are the blocks to that happening?”

Thank you, Adam. I am conscious of the time, so that is me finished.

Thanks, Paul. We have come to the end of our questions. I thank you all for joining us and giving evidence today. It has been useful for the committee to hear your reflections on the National Care Service (Scotland) Bill.

We agreed at the start of the meeting to take the next two items in private. Therefore there is no more public business today, and I close the public part of the meeting.

12:59 Meeting continued in private until 13:38.