Public Petitions Committee

Meeting date: Thursday, March 16, 2017

Official Report 574KB pdf

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Continued Petitions

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Alzheimer’s and Dementia Awareness (PE1480)

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Social Care (Charges) (PE1533)

I welcome everyone to the fifth meeting in 2017 of the Public Petitions Committee. I remind members and others in the room to switch their phones and other devices to silent.

The first agenda item is consideration of continued petitions. The committee will take evidence on PE1480, by Amanda Kopel, on Alzheimer’s and dementia awareness, and PE1533, by Jeff Adamson, on behalf of Scotland against the care tax, on the abolition of non-residential social care charges for older and disabled people. I am delighted that we are joined by the Cabinet Secretary for Health and Sport and her officials David Fotheringham, head of adult social care, and Mike Liddle, policy manager. Welcome to the meeting.

As we have limited time, we intend to move straight to questions, if that is acceptable. I will start. In your submission to the committee of 2 November 2016, you explained that the Scottish Government is conducting a feasibility study on expanding free personal care and nursing care to people with dementia who are under 65. I understand that that is due to be completed in the summer of this year. The committee would welcome a copy of the study when it is published.

You will recall that you gave evidence on PE1480 to the session 4 Public Petitions Committee on 6 October 2015. At that meeting, you explained:

“We are absolutely trying to avoid lists of conditions, because we will always miss one, and that will be the condition that will form the basis of the next petition to this committee”.—[Official Report, Public Petitions Committee, 6 October 2015; c 42.]

It would seem from the details that we have on the feasibility study that you are focusing on dementia. The petitioners for PE1533 argue that the scope of the study should be extended to include people with disabilities.

Can you explain why you have decided to focus on a specific condition while acknowledging that that approach will be criticised?

Thank you for giving me the opportunity to give evidence. I must clarify that the feasibility study will look at the feasibility of extending free personal care to all those under 65 who need it. During the members’ business debate that took place on 6 December last year, that issue was explored and members asked us to look at all conditions. As I have said previously, it would be difficult to look only at one condition. We have taken into consideration the views that members expressed during that debate and how challengeable it would be to look only at one condition, not to mention the issue of basic fairness, and we have agreed that the scope of the feasibility study will look at all those under 65. I hope that that provides the clarity that you seek.

So you have extended the scope of the feasibility study beyond people with dementia.

Yes.

Good morning. Calls have been made to establish a cross-party working group to consider what a fair social care charging system would look like and what it would cost. Have discussions on that taken place? What has been the outcome?

We need to proceed in an orderly manner. The feasibility study will give us a lot of important information so that we can make informed choices about the way forward. The point at which to have discussions with members of other parties is when we get that feasibility study, and I would be very happy to have those discussions. I think that I gave that commitment during the members’ business debate, and I am happy to give it again today. Rather than talking before we have that information in front of us, we would then have something to talk about. I think that that would be the best process. Once we have the feasibility study, I will be happy to engage with members from other parties.

Are any stakeholders represented in producing the feasibility study? Is it on track to be completed by summer this year?

Yes, it is on track. It is being taken forward by Scottish Government officials and analysts, and it involves talking to local authorities and ensuring that we get the right information. However, I am happy to ask my officials to meet stakeholders who want to discuss the feasibility study further and to keep them informed of the work that we are undertaking.

Obviously, I would be very happy for the feasibility study to be brought to the committee once it has been published. The convener asked for the committee to receive a copy of it, and I am very happy to agree to that and to confirm that copies can be sent to stakeholders. If they want to discuss it further once they have seen it, I would also be happy to agree to that.

A slightly different proposal to having a meeting with folk who are interested in looking at the report is having a cross-party working group, perhaps with stakeholders, to look at it and see what the challenges of implementation are. Would you at least consider that?

I am happy to consider that. I hope that the information that we get in the summer will give us clearer options for the way forward. Obviously, they will have to be deliverable, affordable, fair and consistent. First of all, we need to have the information on which to be able to make informed decisions about what is possible. I will not rule out an initial cross-party meeting to look at that and the view being taken that we should continue cross-party discussions. I would be happy to consider that further.

At this stage, should stakeholders and the petitioners simply contact your officials about feeding into the feasibility study?

Yes. Absolutely.

Good morning. In previous evidence, you have explained that there are various models that could be implemented to make the charging regime fair. One approach that you have mentioned is to reconsider the threshold at which people start to pay charges. You have explained that the income threshold that determines when people will begin to pay charges will rise from 16.5 to 25 per cent. The PE1533 petitioners are concerned that a blanket increase in the social care charging threshold will not reflect relative costs of living in different parts of Scotland. What is your view on whether applying blanket thresholds promotes a fair charging system?

We have taken action on the threshold. We raised it from 16.5 to 25 per cent above the pension credit guarantee, or the income support personal allowance and disability premium, because we thought that, in making charging fairer, which is our aim, starting with those on the lowest incomes was the fairest thing to do. That is why we took that step to raise the threshold.

We have also taken action to ensure that members of the armed forces have their war pensions disregarded in income assessments, and it was already the case that local authorities were not charging for people with a terminal illness in the final six months of their life. Steps have already been taken on that.

On the question of whether there should be different thresholds in different parts of Scotland, we would also want to listen to stakeholders who tell us that they want greater consistency in charging policies throughout the country. That issue has been raised with me by a number of MSPs over the years and more recently. It would seem to run counter to the idea of greater consistency to move to different charging thresholds in different parts of the country. As we take forward the information that the feasibility study will give us in the summer, I hope that achieving greater—as opposed to less—consistency will be one of the principles. Having different thresholds in different parts of Scotland would lead to greater inconsistency, and I think that, on balance, members are asking me to ensure that there is greater consistency rather than less consistency.

In the debate on 6 December, you explained that the Convention of Scottish Local Authorities had implemented a new standard financial assessment tool that should reduce the variation in local authorities’ charging regimes. The petitioners for PE1533 have been very critical of the tool’s ability to meet that aim. They argue that there is evidence that variation continues and that some local authorities have increased their social care charges despite the tool being in place. What assessment has been carried out of the tool’s impact and its effectiveness in meeting that aim?

COSLA’s standard financial assessment tool is in its first year of operation. COSLA has said that it will monitor its impact, and we expect it to do that.

I want there to be greater consistency and fairness in the system, as I said in answer to the previous question. Although we have powers to require local authorities to charge or not charge for any particular aspect of social care, the partnership agreement that we have with local government means that local authorities should retain local accountability. They are keen that that remain the case. That is where we are as we seek to make progress on fairer charging, and that is where we want to remain. Although we have the power to mandate such things, we have worked with local government to reach agreement so that we can tackle matters in a different way. That is why the standard financial assessment tool is important. I will continue to discuss with COSLA the monitoring and implementation of that. We need greater consistency, and the local authorities should use the tool to achieve that.

Good morning. You have explained that, if the variation in local authorities’ charging regimes does not improve, you might consider using legislative powers to ensure that it does. At what point would you consider introducing such legislation? How would you use that approach to diminish the variation in charging?

As you say, that power has existed for a number of years. However, the approach that we have taken has been one of partnership. We have attempted to achieve greater consistency, and COSLA has worked with us on that through the assessment tool. We have taken action on raising the threshold, on terminal illness and on armed forces veterans receiving the full value of their war pension. We have taken an incremental approach to improving the system and making charging fairer. I see that continuing, and I hope that the feasibility study that will be published in the summer will help us to reach a consensus—one that involves local government—on the way forward. I would rather take that approach than tackle the issue in a different way. For me, that represents a better route forward.

But would legislation be used as an absolute last resort?

That option has always been there—I think that the power in question was brought in when free personal care for the elderly was legislated for in 2002. It is there as a backstop, but we want to avoid taking such an approach by working with local government to get to a fairer charging position.

We have already made progress—I have outlined some of the progress that we have made on the threshold, armed forces veterans and those in the final six months of their lives—but there is more to be done, and I expect us to do that in partnership with local government, which will be heavily involved in the feasibility study that will be published in the summer.

09:15  

Good morning, cabinet secretary. You have mentioned the standard financial assessment tool and your commitment to work with local authorities on that. The petitioners for PE1533 raise concerns about the democratic accountability of social care charging. In their view, the integration of health and social care has made it less clear which body is responsible for setting policy in the area. What is your view on that? How should councils and integration joint boards work together on the issue in practice and communicate clearly with members of the public who use social care services?

As you know, the integration of health and social care has established a new relationship between health, local government and other partners around the table. We expect that, when the provision of social work services is considered, all those partners will be in dialogue and those discussions will be taken into account when decisions are reached on social care charging.

The framework for the setting of charges is clear. Social care charges will continue to be set by the local authority, taking into account the guidance that has been produced by COSLA, which we discussed earlier, and the other guidance that has been produced. The guidance makes a number of things clear, including—importantly—the need to ensure that people have good, clear information about the available services and the types of charges that might apply. It recommends that all councils provide charging information in a standard format on their websites and that information about benefit entitlement should also be available.

Ultimately, it is for local authorities to decide and, if they make decisions that local people do not like, it is for local people to make their views known about that, and there is an opportunity to do that through the ballot box. If a local authority has a policy on charging that local people do not favour, that is where democratic accountability is exercised.

In the new integrated landscape, local authorities will retain authority over charging.

Dr Kopel has raised concerns about the six-month end-of-life guidelines, arguing that it is often difficult for practitioners to assess whether someone is in the final six months of their life. You have previously explained that, once a DS1500 form has been completed, a person will not be chased by the local authority if their prognosis continues beyond six months. What written guidance is there to support that policy? Are you aware of any complaints that that guidance is not being followed?

That is an important issue. COSLA’s charging guidance recommends that local authorities use their discretion to extend the waiver of charges beyond six months. We would expect all local authorities to follow that guidance, and I am not aware of any evidence that it is not being followed. If members have any evidence of the guidance not being followed, I would be happy to look into that and, if need be, work with COSLA to clarify the guidance.

It is important that no one who is in the last stages of a terminal illness is charged for the personal care that they receive at home. If there is any evidence that that is happening, I would be keen to see that and to take action accordingly. It is important that we continue to monitor the situation and, if there is any such evidence, I would want to see it.

If the committee receives any such evidence, we will forward it to you.

I have a couple of questions. First, on disability-related expenditure, you will be aware that in England it is a legal requirement that any additional expenditure related to a person’s disability is taken into account. That is not the case in Scotland, and it seems that the overwhelming majority of local authorities in Scotland make no allowance for additional costs. That, in turn, raises issues with regard to people’s ability to fulfil their potential, for example to work. Will you be looking at the fact that that issue is simply not recognised in the charging regime?

We will want to continue to discuss with local authorities what is disregarded and what is taken into account as we take the issues forward. There is variation in practice across these islands. The approach of disregarding income and having a buffer on top of that is designed to try to ensure that the income that people are left with is adequate not just to pay care charges but to meet other needs. I guess that we will want to keep the matter under review.

Does Mike Liddle have anything to add about the difference?

Not really; David Fotheringham might have something to say.

Obviously, the disability benefits that people get should take into account their relative needs, and we will be getting additional powers in relation to some of those matters.

In England, it is a legal requirement that additional costs as a result of a person’s specific disability are taken into account and properly assessed. That is what I am talking about, not the general situation in which a person with a disability ticks a particular box and therefore comes under a particular charging regime. The person is specifically assessed with regard to the extra expenditure that comes with their particular disability. For some people, that expenditure can be very significant.

So it would be more of a needs-based assessment.

Yes. Would you at least look at that?

It is something that we can take into consideration and explore further. I come back to David Fotheringham’s point about the devolution of some welfare benefits, which will enable us to look at all these things and perhaps take a different approach. We will certainly give further consideration to the matter.

PE1480 focuses on the issue of people under 65 who have dementia not having access to certain supports; that is clear, and I acknowledge that your feasibility study is looking at that. However, PE1533 is really about whether access to such services should be free at the point of need, which, as I understand it, your feasibility study is not looking at. What is your view on what I think is quite a compelling argument that this is a human rights issue? According to that argument, we should all be entitled to achieve our potential and have the supports to allow us to access work, education and whatever else, but at the moment we have a care and funding regime that actually denies people that entitlement. Disability-related expenditure is part of that, but do you see the argument that a system of support and care that is not very closely connected to people’s individual needs could be a human rights issue?

I agree with you to the extent that a person’s ability to live life to the full and their being supported to do so is a basic right; indeed, we have recognised that in some of the policies that we have taken forward. Let us step outside charging for a second and look at things such as self-directed support or the independent living fund, which, unlike elsewhere, is being continued in Scotland. I think that those are examples of resources that are being used very much to enable people to live the lives that they want to live, for example by continuing to work. The ILF supports people to remain independent at home, hold down a job and go about their daily lives, while the principle behind SDS is very much about personalised support to allow people to live life as they would wish to instead of perhaps being restricted by having to fit into the services that are available. All of that is based on empowerment, personalised care and the ability to live an independent life. To that extent, therefore, I have sympathy with what you are saying.

The fairer charging policy is being taken forward with a view to maximising people’s independence and improving the quality of care that they receive, as well as ensuring that they are not in a position in which they do not accept support because of charges. We want to assess issues such as unmet need in that regard, and the feasibility study will examine that. There might be people who currently do not accept support because of the charging regime. That is a concern, because it means not only that they might not be living life to the full but that they might be encountering severe difficulty in their day-to-day lives.

I note what you say about the independent living fund, and I appreciate that you have continued it for those who are already in it, but the fund is not accepting new applicants.

It will. Resources—£5 million—are available for new applicants to the ILF, so new applicants will be able to apply. The focus has been on establishing the infrastructure around that, and it has taken some time to ensure that the application processes are in place.

As some of the welfare benefits are devolved, there is an opportunity to join the dots a bit more effectively around the supports that are available, whether they involve mainstream care support through local authority or third sector providers, self-directed support, the independent living fund or some of the other benefits that will be devolved. Over time, we will have an opportunity to bring more coherence to those benefits so that we can focus more on what the person needs to be able to live a fully independent life.

I suppose that the human rights approach would mean that saying, “It’s too expensive,” would be an unacceptable answer. The campaigners who submitted PE1533 are exploring that issue, as are some members. For example, you would not say that universal education is too expensive so we will just educate our boys. That is the kind of issue that is being explored.

My final question concerns your understanding of the definition of care. Some of the evidence that we have received on the kind of support that people require suggests that people need not only physical care but support that enables them to be active citizens, to work and so on. Such support would not be included in a narrow definition of care. Local authorities, obviously, have quite significant constraints with regard to what they are doing. Are you concerned that, generally, our definition of care does not recognise people’s entitlement to support that enables them to achieve their full potential and, instead, because it is so narrow, inhibits what they do?

As part of the free personal and nursing care policy, it was necessary to define what was meant by “care” in terms of entitlement. Finances are not infinite, so there has been a focus on support needs around personal care and a prioritisation of needs, with those who have the greatest needs getting support, particularly in relation to dignity and the ability to remain living in their homes. Without that personal care, many people would not be able to remain in their homes, or their families and carers would have to provide all that care without any external support, which would put huge pressure on them.

We will always need definitions. Personal care has been given that level of priority because it has been recognised that it is, by nature, personal. Personal needs—washing, dressing, getting up, going to bed and so on—are about dignity.

I would be cautious about whether there is a need for a redefinition. We live with finite resources, and the focus of our attention at the moment is on what we can do around the personal care needs of those who are under 65. I would like to keep our focus on that and try to see whether we can resolve that issue in a fairer way before we consider the definition of personal care more generally.

From the point of view of the petitioners, the issue is clearly not one that will be resolved by a feasibility study, even though that study will provide a lot of information. A strong and compelling case has been made in relation to the under-65s and issues such as the variation across the country, the definition of need and the comparisons around disability-related expenditure. We might want to examine those issues further, and we appreciate the evidence that the cabinet secretary has given us.

Do members have a view on what we should do now? We will want to reflect on what the cabinet secretary has said. Clearly, the publication of the feasibility study will be a critical milestone and perhaps the committee can consider the issue further at that point. Do we agree to do that?

Members indicated agreement.

Okay, we will do that, and we will take the opportunity to reflect on the cabinet secretary’s evidence. Obviously, the petitioners will also have a view, and that will help us decide on a course of action at a later meeting.

I thank the cabinet secretary for her attendance.

09:31 Meeting suspended.  

09:34 On resuming—  

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Adult Cerebral Palsy Services (PE1577)

I welcome to the meeting Murdo Fraser, who is here for the next agenda item, which is PE1577, by Rachael Wallace, on adult cerebral palsy services. We are also joined by the Minister for Public Health and Sport, and her officials: Dr Gregor Smith, who is deputy chief medical officer, and Elizabeth Porterfield, who is head of strategic planning and clinical priorities. I welcome you to the meeting.

We have a bit of time, so if you would like to make an opening statement we would be happy to hear it.

I understood that the committee wanted to go straight into questions.

Thank you for the opportunity to respond to Rachael Wallace’s petition. I had the privilege of meeting Rachael with her member of the Scottish Parliament, Murdo Fraser, last week, when I had the chance to explore some of the issues about which she has concerns. It is a tribute to her that she has articulated those concerns to try to make a difference and make improvements for others across the country who suffer from cerebral palsy.

We undertook to explore further some of the issues that Rachael raised around physiotherapy access, and the main point that she had been trying to articulate, which is about a national clinical pathway. I think that the committee will want to probe us with questions on those things and on our work with Bobath Scotland and the local pilot in West Dunbartonshire, which we hope will go a long way towards reassuring Rachael about the action that we are taking to address the concerns that she has raised.

We have undertaken to work with Rachael on a range of activities to provide her with a bit more reassurance and comfort that the action that we are taking addresses her concerns. In addition, I will instruct my officials to explore a bit more fully with national health service boards across the country their provision and how they are helping people who have cerebral palsy to cope with their transitions. A lot of people who have disabilities and conditions face a tough transition from children’s services into adult services. We should explore that issue not just in terms of NHS Tayside, in whose area Rachael lives, but across the country.

That work will complement the work that Capability Scotland is undertaking in its mapping exercise and the work that Bobath Scotland is undertaking on the pilot. Together we will get evidence and information that will allow us to take forward a framework that provides reassurance to Rachael and the committee. We will keep the committee updated with our progress on making the difference across the country that Rachael wants us to make.

You will be aware that the petition has been carried over from session 4. As you said, you are funding a pilot project that is being led by Bobath Scotland in conjunction with the West Dunbartonshire health and social care partnership. The Scottish Government has described the pilot project as an

“alternative supported pathway for adults with cerebral palsy”.

The suggestion appears to be that the Scottish Government will not consider the need for a national clinical pathway until the pilot programme is completed. For the record, will you explain the scope of the pilot and why it is described as an

“alternative supported pathway for adults with cerebral palsy”

in circumstances in which there does not appear to be an established clinical pathway?

For your benefit, I might ask Gregor Smith to explain more fully the processes for establishing a national clinical pathway.

In a broad sense, national pathways are delivered for more specialist conditions that require fewer interventions from clinicians and fewer providers. Because of the range of ways in which cerebral palsy can manifest itself and because its management relies very much on a variety of providers across health and social care, there is much more merit in having a more local and bespoke way of ensuring that people get the care that they need. That is why we are keen to learn from the Bobath Scotland pilot in West Dunbartonshire, understand the information that has been amassed during its 18 months and work alongside Capability Scotland and its mapping exercise. From that, we will be able to develop a framework that will allow us to have national principles that will enable a bit more consistency across the country.

We will not proceed with a national clinical pathway because the way in which cerebral palsy manifests itself does not allow its management to be easily translated into that course of action. We want to ensure that local activity is as good, strong and robust as it can be. We are proceeding with the pilot to amass evidence, so that we can ensure, with an evidence backing, that local services are delivered appropriately and in a timely way.

We have a couple of decades of experience in developing pathways at local and national level, and a better understanding of the conditions required for the development of pathways in either of those manners.

The petition refers to an “alternative pathway”, but it would be better described as an alternative approach. Traditionally, when we developed a clinical pathway—this goes back to the first pathway that I was involved in, in the early 2000s—a group of clinicians and experts would get together in a room and examine the evidence for a particular approach to care, look at the contributions from each of the professionals and develop a pathway with supporting data to assess the quality of care along it. That approach is used less now, and we have a very different approach with much more co-creation of pathways with patients and the public.

The alternative approach that Bobath has suggested is to develop a pathway from the service user up, working closely with people who have experience of cerebral palsy to see what their needs are and to develop a pathway using evidence of those needs. That is why the phrase “alternative pathway” has been used.

As the minister has explained, for a condition such as cerebral palsy, there are a number of influencing factors when the approach to developing a pathway is considered. One is the kind of evidence base that exists for that pathway, whether there is consensus around that evidence base and whether the data exist to support the development of that pathway. Is a high-volume specialty or a particularly specialist type of service needed? There can then be consideration of whether the pathway is necessary on a national basis or at a local level. I am convinced by the argument that, in the case of cerebral palsy, we require a stronger evidence base that is developed from the ground up and that informs the national framework for services, so that local pathways can be developed and people can receive care on a local basis.

To me, it feels illogical to say that, because cerebral palsy is a complex condition, it cannot have a national pathway and the process has to start at a very local level. I do not understand that from the petitioner’s point of view. She describes having had a series of people around her when she was a youngster but, as an adult, she had to go and find all the support for herself. It feels as if it should be pretty basic to have a system whereby she would have someone to go where those services would be identified. The idea of a condition being too complex to have a national pathway does not make sense to me. Even if that were the case, I do not get the logic of saying that a pilot in one particular area is going to tell us everything about the condition right across the country.

I am sorry If I have suggested that it is the complexity of—

I think that it was the minister who said that it is too complex.

I think I said that there needs to be cognisance of the fact that the condition manifests itself in a number of different ways. If, as Gregor Smith says, we have local pathways, that will give us a much more holistic picture of the individual patient and their individual needs so that we can ensure that the appropriate transitions are in place and that local services are delivered around the patient in a way that allows them to move seamlessly from children’s to adult services, as in Rachael Wallace’s case.

That is why I said that, at this point in time, there are no plans to develop a national clinical pathway. Nevertheless, the Bobath work is important. It is not just a local pilot; it will develop and enhance our understanding of the condition and the way in which services are delivered. We can then upscale that model and ensure that the principles are understood across the country, so that people do not have the feeling, which Rachael Wallace has described, of falling through the cracks at transition.

That is why we will engage with every NHS board in the country to make sure that appropriate provision is in place so that people do not fall through the cracks, because none of us wish that to happen. There should already be ways in place to help people move seamlessly from children’s services to adult services. If we have much more rigour and a much better and clearer understanding of how services are delivered—which is what the Bobath pilot will offer us—that will move us towards a situation in which the transition is seamless and people feel supported, which I think and hope is what Rachael Wallace wants.

09:45  

I am still not clear on that. You said that it has to be done locally because it is complex, and that we cannot just have a national provision or pathway. However, we are not developing local services or pathways—we have a pilot.

It is a pilot to help us understand what we need to do to enhance local provision around the country, but with the national principles that we all understand will be useful and critical to ensure that the transition is seamless.

Is there a possibility that the pilot will lead to a national pathway? Are you excluding that as a possibility?

From a clinical perspective, one of the characteristics of national pathways tends to be a really narrow range of providers that can give care to patients, so if one or two providers can deliver that care at a national level, that would be a tangible approach for a national pathway.

In the case of the cerebral palsy pilot, there is a requirement in the planning phase to develop robust evidence that suggests the services and approach that are necessary at a local level by multiple providers so that patients receive the best care possible. That is the best way that I can describe it.

National pathways tend to be for a very narrow provider range—for the one or two providers throughout Scotland who are capable of providing care. However, the Bobath pilot will provide the evidence for a framework that underpins local pathway development, allowing for care according to the needs of the local population. I hope that that makes sense.

In your meeting with the petitioner, there was a suggestion that it might take 10 years to develop a clinical pathway and framework for adults with cerebral palsy. Do you agree that that is far too long? Will you set a timetable for developing that work?

At the time of our discussion with Rachael Wallace, there was a misunderstanding about the 10-year timeframe and we tried to give reassurance that it will not take 10 years to develop improvements for cerebral palsy.

The Bobath pilot is 18 months long. It will be pulled together with work that is happening on other neurological conditions—for instance, Huntington’s disease—to help us to develop a framework to make the changes that Rachael has said that she would like to see. That will not take 10 years.

We know that there are national clinical pathways in Scotland for other conditions, such as motor neurone disease. Roughly, what would it cost to set up a national pathway? Does that have any bearing on what you are planning to do for cerebral palsy?

I honestly do not know how much it would cost, but I know that it would—as Gregor Smith described—have several layers and areas of work that would need to be progressed with the involvement of people with cerebral palsy, as well as specialists, non-specialists and all the managers. It is possible to do that, and the Bobath pilot has been looking at how that is done locally with all the providers.

Although there may be, and I use the phrase in quotation marks, “specialist needs” within a general service—physiotherapists are all trained to provide physiotherapy for a range of conditions—what someone with cerebral palsy needs must be defined by looking at the individual.

Yes, we can set up a pathway, but the time costs of the people who would need to get together in order to do that would vary. No specific cost has been attached to this work and cost has not entered into any thinking around it. We agreed that we needed to do the work, so we funded the pilot to see how it could be done in the partnership context, because of health and social care integration. Meeting the needs is not all about healthcare services; there are also issues in the join up with social care. IJBs are responsible for commissioning services, which is why the work must be done locally.

Will you remind us how much the pilot costs?

It is £73,000, so far.

Dr Smith, do you want to comment?

I do not recognise cost as a consideration when thinking about what qualifies for a national pathway and what needs work to develop local pathways. That is not one of the considerations that people factor in.

In the discussion that I had with Rachael Wallace, she described a situation that is often the case in many areas of social policy and health policy, which is that, had issues been identified earlier and the transition been smoother, perhaps she would not have needed costlier services, because some of the issues that she is encountering now would have been prevented.

That is a lesson about the importance of getting services delivered holistically around the person, so that they are empowered to be in control of what services are delivered to them, that they are able to articulate clearly and that they feel that they are being responded to by local services. In that way, the costlier consequences for people’s health and the public purse of not identifying and dealing with something can be avoided.

The whole reason for developing the alternative pathway is to embed the approach of early intervention and prevention. That is the right thing to do for the person; it is also the right thing to do for how we marshal public funds.

Thank you; that is helpful.

The point is that there is no transition. That was the petitioner’s experience—not that it was not terribly well organised.

The pilot is in place to try to identify how transition can be dealt with adequately. We want to make sure that we have a better understanding of what other NHS boards are doing, whether the situation that arose is particular to Rachael Wallace, and whether it is a matter that we need to address much more quickly. The evidence from and the research into the pilot will allow us to speed up some of that across the country.

Is the work to identify what the health boards are doing across the country taking place in parallel with the Bobath pilot?

Yes, it will do. Although I have not been involved in the work, I understand that Capability Scotland is doing a mapping exercise through which it will identify areas that need to be addressed, which will complement the learning not only from the Bobath pilot but from other work on neurological conditions such as Huntington’s disease. The Scottish Huntington’s Association is also developing a framework to help people cope with the condition. I understand that those involved in other neurological conditions welcome that work and want to build on and develop it further, so that it caters not just for Huntington’s disease, but a suite of other conditions.

At this time, we are gathering the evidence and the research in order that we can proceed in a much stronger way and give the reassurance that Rachael Wallace needs.

To expand on that response, it is utterly critical from a clinical perspective that work on transitions is led at a local level. The experience of people with childhood illnesses who transition into adult care—whether that be in chronic diseases such as asthma, epilepsy or whatever else—is about how local services configure themselves, develop the relationships between clinicians and their patients—

Surely transitions must be shaped by the national understanding of issues relating to a particular condition. You are not suggesting to everyone in a geographical area who has asthma that their asthma is specific to their local conditions. There must be a national perspective on how you would manage any condition, which would then inform the local issues.

But that is different from a national pathway, where you might get national guidance or a national framework to help support that local work. A national pathway would take us into a whole different spectrum of approach with regard to how we manage that condition.

There are key principles for transition with regard to any issue or condition, and they are about having those relationships and ensuring that services are delivered timeously to an individual and that they feel empowered. Unfortunately, that does not seem to have happened in Rachael Wallace’s case, and she has explained that to us.

With respect, I think that she would suggest that this is an issue not just for herself but for other people with her condition. Anyway, let us make progress.

Ms Wallace is calling on the Scottish Government to consult stakeholders on the development of a clinical pathway, and she is particularly keen for national health service professionals who support and deliver services for adults with cerebral palsy to be involved in that. Are you prepared to do that?

Absolutely. I am always keen to engage with people with real-life experience of such issues. Again, we have offered to work—and to continue to work—with Rachael Wallace herself to ensure that she has the confidence that our actions are addressing the concerns that she has raised in the petition. Moreover, Bobath Scotland’s work in West Dunbartonshire features very deep engagement with people with the condition, clinicians and the whole range of service providers in that area. We are always absolutely keen to engage with people who have lived experience, because that is how we enhance services.

The petitioner notes in her written submission that she has experienced difficulty in using self-directed support to pay for specialist physiotherapy. It is one example that she uses to highlight why, in her view, a national clinical pathway for cerebral palsy is merited. Are you familiar with that problem and why there might be confusion about which types of services self-directed support can be used for?

The guidance that accompanies the self-directed support legislation states that direct payments can be spent in this way, provided that approved outcomes are met, and that such support should be empowering for people with particular conditions. In our discussion with Rachael Wallace, we undertook to carry out further work in case that was not understood in a national sense, and we have also worked with COSLA on developing much more consistency in the more general application of self-directed support across the country. After all, the desire behind and the aim of self-directed support is to ensure that people feel empowered and in control of their condition and the way in which they get help.

First, I want to put on record my thanks to the minister and her officials for the opportunity to meet her and the petitioner a couple of weeks ago and her officials prior to that. The meetings were very helpful.

Reflecting on some of the exchanges that we have just heard, I think from my experience of talking to Rachael Wallace her biggest issue was the inability to find anyone in the NHS with the correct knowledge and expertise to address her issues. It was different when she was a child, but when she made the transition to adulthood there seemed to be nothing available and no one to even point her in the right direction. That is really what led to the petition being taken forward, because she was left having to source specialists in physiotherapy herself and, in some cases, to travel quite large distances to get the specialist treatment that she needed.

I am quite keen to focus on two issues that have come up, the first of which is the local pathway that has been mentioned. The petitioner has made it very clear that there is a need for a national clinical pathway. My concern about going down a local route is: if you leave it to health boards to develop this pathway themselves, what confidence is there that they will do so? I am sure that Rachael Wallace’s experience so far in Tayside is not atypical of what is happening elsewhere in the country, and the whole point of having a petition calling for the establishment of a national clinical pathway was to ensure some uniformity of care and support for CP sufferers right across the country.

The second issue, which the convener has already touched on, is about timing. We want to know that there will be some urgency in dealing with this matter. I am encouraged by what the minister has said about the work that is going on, but we do not want to come back here in five years’ time and find that very little has happened.

10:00  

Absolutely. People will be going through transitions now, and we do not want to hear more stories like Rachael Wallace’s. I agree that pace needs to be injected.

We are coming to the end of the pilot. After it, we will be able to move forward on ensuring that there is a better national understanding and that there are ways in which we can build a framework that has national prominence for local NHS boards or local providers to understand.

I go back to the points that Gregor Smith made about the local clinical pathway needing to be based on cognisance of the individual’s condition and the local support that can be brought around them. Murdo Fraser is also right, however, that we need to drive this nationally, too. That is partly about ensuring that people have a better understanding of the condition and that there is much more general awareness of it, so that Rachael does not feel that she has to go over what her condition means for her or explain it to people whom she believes should already have knowledge of what she might be going through. One of the points that Rachael made was that she was not able to speak to anyone who could tell her what related conditions she should anticipate as part of her cerebral palsy. We will certainly undertake to ensure that there is greater awareness raising.

I think that there will be the ability to develop a framework that is based on the Bobath Scotland pilot. Bobath Scotland has just launched a new website and, although it is for children, we want to explore ways in which we can develop it to be applicable to everybody, including adults with cerebral palsy. We will continue to work with Rachael on all those things to give her the confidence that pace has been injected into the work so that she does not find herself having to resubmit her petition in five years’ time.

So that I am clear about the local pathways that you have talked about, what is the role of the Scottish Government and the national NHS in ensuring that such pathways are delivered by local health boards?

Local ownership is really important in pathway development, because local clinicians and local co-ordinators are relied on to champion that. One of the best ways of trying to resolve some of the problems that Ms Wallace has experienced in co-ordination at a local level—the signposting, the availability of services and the visibility of those services to local clinicians—is by local ownership and development. That can be influenced in a variety of ways through the national medical directors and the national nurse directors group, who can be examined on where they are with that development and how they assure themselves of the service through their local clinical governance structures. There is also a really strong role for groups such as Capability Scotland to hold to account the local boards, alongside the Scottish Government, for the services that their members and the people whom they represent experience.

We also have the national advisory committee for neurological conditions. There might be a role for it to ensure that there is national oversight of the way in which local provision is delivered. A workforce planning sub-group is part of that. That gives us another opportunity to have a national understanding of local delivery.

Ultimately, our aim is to improve the service that people with cerebral palsy experience. There is a variety of ways to do that. I will use the example of another area of clinical practice: respiratory medicine. The pathway work with respiratory medicine started between 2006 and 2008. Across the country, we gradually saw huge improvements in the way in which patients with chronic obstructive pulmonary disease, in particular, experienced care. The formation of the national airways group, which represented all those pathway groups coming together, sharing good practice and learning from one another, has meant that they are able to take things on further. There was never a national pathway for respiratory medicine. Those pathways developed cognisant of local needs and local services, they were owned by local services and respiratory care has been taken forward.

I think that it is remarkable to suggest that it is the job of the charity Capability Scotland to hold an NHS board to account, given that I would imagine that the board often commissions work from an individual charity. That would seem to me to be a very uneven battle. However, are lessons emerging from Bobath Scotland’s work at a local level about what local services care would encompass, including health and social care, beyond physiotherapy? Are there early lessons emerging just now that might be worth sharing with those who are concerned about this question?

I think that what Dr Smith said earlier was about the number of ways in which boards can be held to account and I mentioned in response to Murdo Fraser the national advisory committee for neurological conditions. I think that it is a bit disingenuous to suggest that we are only and solely looking for Capability Scotland to be holding boards to account.

I did not say that. I said that it would be remarkable if a charity was able to hold a board to account. It would be a first, as most—

Actually, third sector organisations evolved—

I think that there is an issue about anyone holding a board to account, so there would be an interesting lesson to learn from that.

Perhaps. There are early lessons from the Bobath Scotland pilot, which has been on-going for around 18 months. The organisation has been concentrating on working with the workforce and ensuring that they have a better understanding of the condition and where the gaps in provision exist. The organisation has been working to ensure understanding of the transitions for people with cerebral palsy. Phase 2 of the pilot has been looking at practical improvements that can be made and what interventions need to be undertaken to ensure that the transition is smooth and outcomes are improved. We will shortly get the final lessons of the pilot and we can share that full learning with the committee, if that would be of interest to it.

Okay. Are there any further questions from members?

I know that the convener has gone over this issue previously, but I still have a problem with it. I understand the necessity for the local delivery of services, but I am struggling to connect the dots between having a pilot for one local pathway and developing different local pathways across Scotland. How can each local authority have its own pathway to follow if there is not at least at least a framework for a national pathway?

It is not unusual to develop policy and practice by having a pilot to test what works and what is possible, to understand what barriers there are, to see what more needs to be done and to see what unintended consequences might crop up through the process, then to distil that learning and share it and those key principles nationally. That is why there has been a pilot and why there has been the engagement with Bobath Scotland. Given its expertise on cerebral palsy, it was commissioned to provide us in the Government, before we undertake national policy decisions, with research evidence and understanding about what needs to happen with the condition and what needs to be improved, which we can then share with boards so that they can apply the key principles to their local clinical pathways to ensure that provision is improved across the country for people with cerebral palsy.

To me, you have just described a national pathway.

As is often the case in these circumstances, Mr Whittle, it is really easy for the terminology to get mistaken. You referred to a national framework, which is important. The evidence from a variety of sources, including current practice across the boards, will provide us with a sense of a national framework that can inform best practice in pathway development, rather than provide us with a national pathway, which is a completely separate thing. A national pathway would be a way of delivering care to patients from only one or two providers on a national basis.

Would it not be sensible, bearing in mind what Mr Whittle has just said, to run a parallel project in, say, Aberdeen or in another local authority area and perhaps have even a third one? Statistically, that would be more sensible than relying on just one, particularly one in West Dunbartonshire. That is in my local area and has a lot of rural parts, which means that we are not looking at the conurbations so much. I believe that there should be a balance in that regard in order to get the right result.

That might be one option, although I am also aware that the committee has asked me to inject pace into this work. As well as working with the clinicians, this is about working with individuals with cerebral palsy and the expertise and knowledge that Bobath Scotland has more generally, aside from the pilot. I think that, together, we will be able to get to a place where we can provide a national framework that understands the reality and complexity of Scotland’s geography, from the cities and urban areas to the islands. Understanding the condition as best we can will enable us to improve provision nationally. I do not think that the committee would want me to undertake more pilots at the risk of delaying improvements across the country.

It is just a pity that you did not start off with pilots in, say, three different areas rather than just one. There are 31 other local authority areas.

I ask Elizabeth Porterfield to comment on the reasons why West Dunbartonshire was picked.

It was done entirely in working with Bobath. We wanted to look at the matter and that was Bobath’s suggestion, so that is how we agreed to go forward. There was no proposal to do pilots in two or three areas. We wanted to look at the possibilities, and the integration joint boards and the community health partnerships are now the commissioners of the services, so we have to look at it in that way.

I take your point, Mr Corry, that we might have looked at doing pilots elsewhere, but the partner in this case is Bobath, and West Dunbartonshire is where it proposed doing the pilot. It is as simple as that, I am afraid.

Bobath Scotland has an in-depth, national understanding of the condition, as it works with many people across the country. Along with the individual outcomes of the West Dunbartonshire pilot, Bobath’s national understanding and expertise will be used as we all work together towards ensuring that we get a framework that is deliverable throughout the country. The mapping exercise by Capability Scotland is looking to see where provision may need to be enhanced, and we have undertaken to further enhance that by working with NHS boards across the country. In addition, there is the work that the Scottish Huntington’s Association is doing on frameworks for that condition, which those who work on other neurological conditions have said they would like to use to enhance services for their particular conditions.

Piecing all that together will put us in a strong position to deliver a national framework that understands the geography of Scotland, understands the desire that we all share to improve services across the country for people who suffer from cerebral palsy and addresses the issues that Rachael Wallace raises in her petition such as transition, access to things such as physiotherapy and the sense of powerlessness that she felt as someone with the condition. I anticipate that that work will lead to improvements, and I hope that it gives her comfort. We will continue to work with her and test that against her expectations.

I am just concerned about the situation. I would not say that you have been led by the nose by Bobath and I am not decrying the work that it does, but the approach takes away from the national picture. That is my concern. You might have gone out to a bigger area of Scotland.

As I highlighted, Bobath has a national presence and, probably, far more expertise in the condition than any of us round the committee table has. We have undertaken to test with all NHS boards what they are doing and whether it is appropriate, looking at their transition programmes and how they are helping people to overcome the barriers. We are also funding the Scottish Huntington’s Association to develop its framework, which people who work on other neurological conditions have said they are keen to use to enhance provision for their particular conditions.

Thank you.

The only thing that I would add is that there is a bit of a chicken-and-egg situation here. I presume that you actively chose Bobath to do your pilot and had a conversation with it about defining the pilot. However, we will await its findings with interest.

We have come to the end of our consideration of the petition. I thank the minister and her officials for attending. We will want to reflect on the evidence that we have heard and to test it against the responses of the petitioner and others. We will decide what further action to take at a future meeting. We have been given plenty of food for thought.

Is there any suggested action that you would like to highlight, Mr Fraser?

It has been a helpful session. Quite a lot of information has come out over the past half hour or so. It would be useful to take that away, digest it and get the petitioner’s view on where we should go from here.

In that case, we are agreed that we will reflect on the evidence from the minister. At that point, we will decide what further action to take.

I again thank the minister and her officials for their attendance. It has been a very useful session.

We undertake to make sure that, as the committee undertakes its deliberations, it has an idea of when the learning from the pilot will be available. That might help the committee with its understanding of how to proceed.

We are particularly happy with your clear view that the process will not take 10 years. That will be reassuring to everybody.

10:16 Meeting suspended.  

10:18 On resuming—