Good afternoon, everyone. The first item of business is a debate on motion S4M-14702, in the name of Jamie Hepburn, on the Carers (Scotland) Bill.
I call Jamie Hepburn to speak to and move the motion. Minister, you have 14 minutes.
I am delighted to open the debate on the Carers (Scotland) Bill on a motion that the Parliament agrees to the general principles of the bill. I thank the Delegated Powers and Law Reform Committee, the Finance Committee and, in particular, the Health and Sport Committee, for their work to inform Parliament of their consideration of the bill.
I was pleased to see from the Health and Sport Committee’s stage 1 report that it supports the bill’s general principles. I will try to respond to some of the issues that the committee raised in its report. I also thank the Convention of Scottish Local Authorities, the national carers organisations and, crucially, the carers themselves and their representative groups, for the constructive engagement with the Government and their considerable input into the bill to date. I have tried to listen carefully to the views expressed; they have certainly helped me consider how the bill can be improved further and how we can take forward issues outside of the bill.
I will outline some of the Government amendments that I intend to lodge at stage 2 if, as I hope it will, the Parliament sees fit to agree to the bill’s principles this evening. Several of the amendments are made as a direct result of suggestions and proposals that particular groups have made and which the committee has highlighted. I hope that carers will be able to hear their voices loud and clear throughout the bill’s provisions and, indeed, throughout the bill’s passage in the Parliament.
There are more than three quarters of a million unpaid carers across Scotland. They do an outstanding job caring for their loved ones, friends, neighbours or whoever it may be. It is right that we do what we can to better support Scotland’s carers.
The purpose of the bill is that adults and young carers should be better supported on a more consistent basis, so that they can continue to care, if they so wish, in good health and to have a life alongside caring. The bill aims to do that by extending and enhancing rights for carers in law. In the wider context of the programme for government, the bill forms a key part of the Government’s position to tackle inequality, promote fairness and encourage participation.
Scotland has a growing population of older people successfully living longer. Sometimes, they do so with a range of complex and multiple physical and mental healthcare needs. There are also more children with complex health needs or disabilities. In the most deprived areas, 47 per cent of carers care for 35 hours a week or more. That is almost double the level in the least deprived areas.
We know from research that, although providing shorter periods of care can be positive for a person’s mental wellbeing, those providing longer hours of care report a negative effect. We need to support Scotland’s carers so that they in turn can support the many people with illnesses and disabilities or those who are frail. We especially need to support those who experience considerable disadvantage. Therefore, our wider work to tackle health inequalities within the even wider context of tackling economic disadvantage is, of course, crucial.
The bill is also set in the context of other legislation. It will complement the Public Bodies (Joint Working) (Scotland) Act 2014 and its provisions enabling the integration of health and social care. It will also work in conjunction with the Social Care (Self-directed Support) (Scotland) Act 2013 and the Children and Young People (Scotland) Act 2014.
Of equal importance is the continued emphasis on supporting carers in ways that cannot be included in the bill. We will continue to progress, for example, the carer positive initiative to recognise employers who actively support carers in the workforce.
I will turn to the bill’s provisions and the Health and Sport Committee’s comments in its stage 1 report. The bill will introduce a wider definition of carer. We are removing the requirement that a carer be someone who provides care on a regular and substantive basis. We are also removing the requirement that a cared-for person must be a person for whom the local authority must or may provide or secure the provision of community care services. All carers can ask for, as well as be offered, an adult carer support plan or a young carer statement. Under the bill’s provisions, carers will have a right to an assessment of their needs.
I want more carers to come forward and to have an adult carer support plan or a young carer statement, as those are the gateway to support. At present too few carers have an assessment, so many carers are not getting the support that they need. The Health and Sport Committee has asked for clarification on how that additional demand will be managed.
I reassure the committee, and stakeholders for whom that is a concern, that an adult carer support plan or a young carer statement must be proportionate to the needs that are to be met and should reflect the carer’s wishes, preferences and aspirations. It can be what might be described as “light touch” where that is consistent with those needs, preferences and aspirations. The critical point is that each individual carer should get a support plan that matches their assessed needs. Additional resources for local authorities will accompany the bill.
The adult carer support plan and the young carer statement will set out the carer’s identified personal outcomes and needs and will record the support that is to be provided to meet those needs. The plan will also contain information about the adult carer’s personal circumstances at the time of its preparation. That will include the nature and extent of the care provided; the impact of caring on the carer’s wellbeing and day-to-day life; and—importantly—information on the extent to which the carer is willing and able to provide the care.
Many carers have said that knowing that the person for whom they care will be supported when they are unexpectedly unavailable brings peace of mind. Enable Scotland has effectively communicated the impact that that can have on carers, and the Health and Sport Committee has commented on that aspect in its stage 1 report.
I recognise that that is an issue of importance to carers. Therefore, as the First Minister set out at the carers parliament, I intend to lodge a Government amendment at stage 2 so that the adult carer support plan and young carer statement will also contain information about emergency planning.
I am pleased that we have been able to position young carers so firmly in the bill. I, along with other members, attended the young carers festival earlier this year, and none of us could have failed to be moved by listening to the experiences of the young carers who were there. Our ambition for young carers is that they should have a childhood as similar as possible to that of their non-carer peers.
The bill introduces the young carer statement as a direct response to feedback from young carers and their representative organisations to recognise the specific needs of young carers. To further that ambition, the statement must contain information about the extent to which the care that is provided by the young carer is appropriate.
The bill contains provisions that require local authorities to set local eligibility criteria. The criteria will allow the local authority to determine whether it is required to provide support to carers. There are also powers for the Scottish ministers to specify in regulations matters to which the local authority must have regard in setting local eligibility criteria.
I have been struck by the different levels of support that are available for young carers in different areas. Why has the Government come down in favour of having local eligibility criteria rather than establishing a baseline that could be expected to apply across Scotland and which local authorities could tailor to their particular needs?
I was just about to come on to say that I recognise that there has been debate about that particular issue. We need to recognise that local authorities are democratically accountable bodies in their own right, but it is important that we set some direction, and we will do so. As I have set out, we will address in regulations matters to which local authorities must have regard in setting local eligibility criteria.
The Health and Sport Committee has asked us to consider that further; we have done so and we will continue to do so. I recognise that the national carers organisations have undertaken a range of work on the matter, for which I thank them, and I assure them that that work will inform the regulations that we set out. My clear commitment to those organisations is that we will continue to work with them to ensure that we get the regulations and guidance right. The bill is only at stage 1, and I will consider anything that comes forward at stage 2.
Local authorities are under a duty to prepare a local carer strategy and must consult with health boards, carers and carers organisations in doing so. As the Health and Sport Committee noted in its stage 1 report, those provisions will complement those that are set out in the Public Bodies (Joint Working) (Scotland) Act 2014. All local authority and national health service board functions created under this bill that relate to the delivery of services to adult carers will require to be delegated under integration schemes under the 2014 act. All local authority and NHS board functions relating to the young carers will be capable of being delegated if the local authority and NHS board choose to do so.
To complement provisions in the Carers (Scotland) Bill on carer involvement, regulations under the Public Bodies (Joint Working) (Scotland) Act 2014 provide for carers to be represented on integration joint boards and integration joint monitoring committees and to be involved in strategic and locality planning by integration authorities. I believe that it is essential that carers’ voices are heard locally, and our legislation will help ensure that that happens.
Local authorities will be required to establish and maintain an information and advice service. That recognises the role that timely, accurate information about issues such as income maximisation can play in enabling carers to sustain their caring role and have a life alongside caring, which is of course one of the fundamental aims of the bill overall. It is my intention that, in complying with that duty, local authorities should pay due regard to existing provision, including that provided by the third sector and national health service boards.
The Health and Sport Committee has recommended that that intention should be made clearer. I agree, so I intend to lodge a Government amendment at stage 2 to clarify that, where sources of information and advice are already available within the local authority area, there is no requirement to create an additional information and advice service, although there will still be a requirement to maintain such a service.
Finally, I take this opportunity to clarify the position in relation to the waiving of charges and replacement care. That is an important issue for carers, so I am pleased to confirm that carers will not be charged for replacement care that meets their assessment needs; neither will the cared-for person be charged for support that meets a carer’s eligible needs. The cared-for person’s views will be taken into account in decisions on services that are delivered to him or her in order to meet the carer’s needs. When the bill commences, local authorities will be required to waive charges for support provided under section 22 of the bill. Minimal amendments to existing regulations on waiving charges will be required to reflect that change.
I will say a few words about the bill’s implementation. The effective implementation of the bill will be hugely important as there is so much in it of benefit to carers and it enshrines a number of significant carers’ rights. I restate my commitment to key stakeholders to work together with them to ensure that implementation of the bill is firmly grounded in reality. As I set out earlier, the feedback and views that we have received thus far have been hugely important to us. I look forward to our continuing to work constructively together to deliver the regulations and guidance under the bill.
Again, I thank the Parliament for the opportunity to set out what I expect the bill to do for carers. I mentioned some of the issues raised by the Health and Sport Committee in its report; I know that it raised other issues, but I am sure that they will be covered over the course of this debate. I look forward to continuing to hear the views of the committee as we move forward to stage 2 and I look forward to hearing what other members have to say in today’s debate on this important issue.
I move,
That the Parliament agrees to the general principles of the Carers (Scotland) Bill.
I call Duncan McNeil to speak on behalf of the Health and Sport Committee. Mr McNeil, you have 10 minutes or thereby.
14:43
The majority of us in the chamber this afternoon have been, or will be at some point in our lives, carers. For some of us, it will become a lifelong commitment; for others, it will be something that we do intensely for a few months that will change our lives dramatically, and then it will be over. Being a carer is a role born out of love and support for those closest to us. It can bring a source of satisfaction, be life affirming and deepen relationships. However, it can also be physically demanding and require huge emotional strength. It can have a detrimental effect on an individual’s physical and mental health, friendships, relationships and employment.
The Health and Sport Committee welcomes and supports the general principles of the bill, which seeks to provide better support and rights for carers. It is important to ensure that people can continue to care in good health and have a life alongside caring. I offer my thanks and those of the committee to all the witnesses who gave evidence on the bill but especially to the carers, who gave of their precious time to engage with the committee. We were fortunate to meet carers from far and wide—Shetland, Falkirk, Glasgow and Skye. We met young carers, many of whom had been caring since their primary school days, and older carers in their 70s and 80s. The meetings gave us an invaluable insight into those carers’ daily lives and to their hopes and aspirations to receive better support.
There is much to be welcomed in the bill, including the broadening of the definition of carer and the provision of a universal entitlement to an adult care support plan or a young carer statement, which the minister mentioned in his speech. We welcome the agreement that the Scottish Government and COSLA have reached that will ensure that charges for replacement care will be waived, which follows on from the Finance Committee’s scrutiny of the financial memorandum. We also welcome the Government’s further clarification of replacement care costs. The figure of £16 million is now regarded as a maximum estimate. The committee was keen to get that clarification before today’s vote.
My colleague Johann Lamont referred to eligibility criteria in her intervention. During our scrutiny we explored in some detail the question of whether the eligibility criteria that will be used to determine which carers are provided support by the local authority should be set at the local or national level. The committee took evidence and recognised the concerns on both sides about eligibility criteria. On the one hand, carers wanted the Scottish Government to set criteria on a national basis from the outset. They believe that that would provide equity and a degree of certainty for carers across Scotland, and prevent what many describe as a postcode lottery. On the other hand, COSLA and the local authorities were concerned that they needed to be able to prioritise support in line with local needs.
As the minister mentioned, our report calls for the Scottish Government to give further consideration to whether the balance between Government and local authorities in setting eligibility criteria is appropriate. The minister made it clear that he believes that the right balance is being struck. I take encouragement from his remarks today that that discussion will continue. If things stay the same and there is no substantial movement from the minister’s stated view, there will have to be a focus on assessment and monitoring of the approach. People need to be assured that the issues that they are worrying about are being tackled. We need to be able to ensure that the approach that is being taken is delivering what we expect on the ground. I welcome the minister’s commitment, in his response to the committee’s report, that he will continue to work with COSLA, local authorities, the national carers organisations and carers to share their ideas and views about eligibility criteria and how they are monitored and assessed. I look forward to hearing the outcome of those discussions.
The minister has listened to our evidence on several other areas of the bill, which we welcome. He committed to bring forward changes to the bill at stage 2 in the light of our findings. We look forward to hearing how he will do that—first, with regard to our recommendation that consideration should be given to prioritising assessments for carers who are caring for someone at the end of their life; secondly, with regard to our recommendation that it should be made clearer that the focus should be on supporting and enhancing existing carer information and advice services—any new services should be established only where necessary, as the minister said in his speech; and thirdly, with regard to our recommendation that adult care support plans and young carer statements should include consideration of emergency planning arrangements. We look forward to assessing the details of the Government’s amendments in those areas at stage 2.
I am pleased that the Scottish Government supports our recommendation that the bill should place greater emphasis on the role of the national health service. However, I ask the minister to provide further information this afternoon on hospital admissions and discharge. We heard on several occasions—and we know from our casework—that there are concerns among carers and carers organisations that a lack of consultation with carers when a person for whom they are caring is admitted or, more important, discharged from hospital often results in crisis situations and, in many cases, ultimately, unnecessary readmissions to hospital.
We asked the Government to respond to the call to include in the bill provisions that place a duty on health boards to involve carers in hospital admissions and discharge procedures, and the Government confirmed that health admissions and discharge protocols will highlight the importance of consulting carers in the process. However, the Government also highlighted that local authorities are required to take carers’ views into account should the community assessment need to be revised, so far as it is reasonable and practicable to do so. That suggests that there may be instances in which it is not reasonable or practicable to take carers’ views into account before the cared-for person is discharged. A question arises from that, and I hope that the minister will be able to give us some examples of where he believes that it would be appropriate not to consult carers at the point of discharge.
The minister has said that further detail will be provided on several provisions in the bill by way of regulations. That includes further clarification of what is considered to be a short break for carers. Can the minister provide further detail on the Government’s approach to those regulations? Will draft regulations be published? What will the consultation process be? We must ensure that, even though the plans are not in the bill, there is scope for the Parliament and those who will be directly affected by the plans to engage with and shape them.
The committee believes that the bill is an important step in delivering appropriate care and support to carers in 21st century Scotland, and we recommend that the Scottish Parliament supports its general principles.
14:53
I, too, thank those who gave evidence on the bill to the Health and Sport Committee, and I thank the carers organisations that have worked alongside committee members, both at committee and in other locations, and given us advice and information on the bill and what they believe should be in it. I am grateful for that.
We welcome the bill. Its sentiments and general principles are easy to support. Carers need to be recognised for the role that they play in looking after family and friends, giving, and continuing to give, even when that is to their detriment. The value of that in monetary terms is estimated to be £10.3 billion per annum, but what carers provide in personal terms is priceless. They do it because of love and compassion—they do not want to see their loved ones going without support—and I believe that we, in turn, must support them. Carers are used to warm words and appreciative statements. What they really need is support. On the face of it, the bill offers that, but it needs to be strengthened to ensure that it delivers real support for carers.
Carers’ lives are as different as the individuals, so their needs will always be different. They cope in circumstances that are often difficult to comprehend, and the bill seeks to support them in their role. Adult carers need to be able to have a life of their own, the ability to work and the ability to decide on the extent of their caring role.
Young carers need support to be children, to have a childhood and to have that role recognised. The bill talks about removing the caring role from pre-school children. Young carers organisations disagree. They believe that young children need to be allowed to care, but only to an extent that is appropriate to their age and wishes. I believe that that principle holds true for all carers. They must be given a choice about whether they are carers and, if so, what amount of care they provide. That turns current practice on its head. At the moment, carers are expected—often forced—to care, and do so with very little support. They do not have a choice.
I have heard from constituents who are at their breaking point, collapsing from stress and exhaustion, yet receiving no support. They cannot attend to their own health needs because there is no one to pick up their caring role. I have also heard of carers who suffer violence because their loved one no longer knows who they are and reacts badly to them, yet there is no protection for them and they are told that they must continue to care as there is nowhere for a violent person to be cared for.
We hear from young carers that they have to choose between education and their caring responsibility. Every child needs a childhood and every child has a right to education. That should not be compromised by their caring role. Their caring role must be replaced to allow them to access education, without the threat of being taken into care. Families need support, not fear.
Turning to the finance that supports—or, possibly, does not support—the bill, COSLA and carers organisations are concerned that the financial memorandum is not realistic about the cost of providing support to carers. One carer told me that the cost of providing replacement care to allow her a break would run to thousands of pounds if it was provided for a week. The financial memorandum does not reflect those costs. The Government has said that it will finance replacement care; I welcome that, but its costings need to be realistic. It has committed £16 million, but it is not clear whether that is from the funding that is already allocated to carers, or whether it is new money.
Other aspects of the bill are also unrealistically costed. The cost of carrying out an assessment runs to much more than the financial memorandum suggests. Neither does the bill take account of the burden on social workers, who are already overworked. Can other organisations and professionals carry out carers’ assessments? Could that be a role for carers centres, which could relieve pressure on social workers?
I turn to changes that I believe would strengthen the bill. COSLA and carers organisations are concerned about the eligibility criteria, which a number of members have mentioned. Councils, which are under huge financial pressure and are taking on more of the burden for a smaller share of the finance, are concerned that the bill is yet another unfunded demand. They understand the needs of carers and empathise with them, but they worry that services for carers will mean fewer services for the cared-for person if the provision is not properly funded. If that were to happen, the burden would fall to carers again and we enter a vicious circle. Councils do not want nationally set criteria for support for carers because they are afraid that that will be unaffordable. However, carers are concerned that there will be a postcode lottery with regard to support for carers if criteria are set locally.
Carers organisations have come up with a possible solution, which involves setting minimum national standards to prioritise the needs of carers who are unable to continue their caring role without support; those who are on the verge of having to give up the role; those who have to choose between employment and caring; and those who are looking after someone at the end of their life. They suggest that those people should be eligible for support through national criteria. The terms of the support must be person centred but can be locally decided, while delivering the outcome that allows the carer to continue to care.
Carers organisations also suggest that support for carers more widely could be set by local criteria, but the suggestion would ensure that those in most need are prioritised. A similar proposal has been made by Unison. That is especially important in the early stages of delivery of the bill’s outcomes, because even the Government admits that only a small percentage of carers will have their needs met in the early days of the act. It is important to ensure that those are the carers who are most in need.
The bill provides for short breaks for carers but lacks a definition of what a short break will be. Will it be an hour to nip out to the shops? Will it be an afternoon to meet friends? Will it be a week to go on holiday? None of that is clear in the bill. What is clear is that carers are the only people in our society who are expected to work unsupported 24/7. A short break needs to be a break from caring. However, it should not be seen as the only support that allows a carer to live their life. A number of constituents have raised the issue with me as a concern. One was told, when she had to go into hospital, that she would receive respite care to allow her to go into hospital. However, despite being told, on her discharge from hospital, that she should do nothing strenuous for a number of months, her adult daughter was returned to her immediately without any additional support being provided. Her daughter has mobility problems and needs to be lifted often as part of her care. My constituent was told that she had used up her annual allocation of respite and, basically, that she had to get on with it. Another constituent who was offered a hospital appointment for an operation organised replacement care herself, which involved a family member travelling from abroad and her booking into a respite care bed. All that had been organised only for her operation to be cancelled at short notice without her being able to change any of the alternative care arrangements that she had put in place.
The bill specifically entitles young carers to a young carer statement, but it is unclear what that statement will provide. As a minimum it must assess support to ensure that the young carer has a childhood and is fully engaged in education. The Scottish Youth Parliament’s report entitled “A Costly Youth: The Impact of Caring on Young People in Scotland” highlights the impact that caring has on education. Young carers are concerned that the young carer statement will be placed with their child’s plan—if they have one—or passed to their named person. If the statement is prepared correctly, it will detail the support that the young carer needs and may give details about their home circumstances, and they are not always happy about their headteacher—the default named person—having access to that. The situation will vary depending on the child’s relationship with their headteacher and the support that they receive from the headteacher, but I believe that the minister needs to look at that again. I fear that the lack of confidentiality could result in young carers avoiding having a statement and asking for support. It is really important that a school knows that someone is a young carer so that it can provide educational support, but it should be up to the young person to decide on the level of information that is provided to the school regarding their home circumstances.
The bill needs to look at accountability and enforcement. A carer’s life is challenging enough without their having to fight for the support that they are entitled to. We need to acknowledge that things do not always work well and that carers need a simple, straightforward appeals process. The current system is too complicated and takes too long to work through. A carer simply does not have the time to navigate a complicated process, especially if they are caring for someone who is terminally ill. An appeals system that is accessible and simple will benefit carers and allow them to access the support that they need. Both the assessment and the delivery of support must be subject to appeal, and I ask that that be included in the bill.
Presiding Officer, I am aware that I am running out of time.
You can have a little more time, if you want.
Thank you, Presiding Officer.
The minister mentioned emergency planning, and I welcome his commitment to amend the bill at stage 2 to allow for emergency planning. Something else that must be included is transition planning. Many elderly carers look after their offspring, knowing that their offspring are likely to outlive them and worrying about what will happen to them when they are no longer around. Emergency plans are therefore essential, especially in situations involving elderly carers. The assessment needs to look at transition planning as well, so that people can have comfort.
We need security for advice and information services. I welcome the minister’s commitment to lodging an amendment on that at stage 2. However, such services should be a bit more secure. Instead of there being no requirement on local authorities to establish them, there should possibly be a commitment that they should support such services. Information services for carers are independent of local government, although much of the support comes through local government, and it is important to have an independent voice supporting carers.
We need equalities statements as part of the carers plans from local authorities and a bill of rights for carers so that they know what they are entitled to.
We welcome the bill and hope that the Scottish Government will listen to our concerns and work with us to improve the bill. If we do that as a Parliament, we can go much further than warm words and show carers how much we value what they do.
15:05
I am pleased to see the bill make its way through the parliamentary process. While it will require a number of amendments as it goes forward, the Scottish Conservatives will support it at stage 1.
I echo the thanks already expressed to the many witnesses who gave evidence to the Health and Sport Committee—many of them carers themselves—and who let us know where they support the bill’s provisions and where they have concerns.
The care provided by the many thousands of adult and young carers today is valued at a massive £10.3 billion a year. While there are already various strategies and pieces of legislation in place to help to improve carer identification and support, the bill seeks to achieve better and more consistent support for all Scotland’s carers by enshrining their rights in law so that they can continue to care, if they so wish, in good health, can have a life besides caring and, in the case of young carers, can have a childhood similar to their non-carer peers.
The aims of the bill are laudable. If they are achieved, they should make a significant improvement to the lives of the carers who make such a valuable contribution to our society.
That said, the Health and Sport Committee heard serious reservations about parts of the bill from the witnesses who gave written and oral evidence. I note the minister’s response to them and his welcome decision to introduce a number of amendments as the bill proceeds through Parliament. I will touch on a few of those concerns during the remainder of my speech.
The broadening of the definition of carer and the entitlement to an adult carer support plan or a young carer statement, which should enable more carers to seek support, is generally welcomed. However, as we have heard, that has led to concern about how local authorities will manage the expected increase in demand for an adult carer support plan or a young carer statement in accordance with carers’ wishes and level of need. While the ministerial response gives some comfort that additional resource will be available to support management of the demand, there are still serious concerns about the adequacy of the funding that is to be made available.
No timescale is specified in the bill for providing an adult carer support plan or a young carer statement. There are cases in which they are required urgently, such as when a carer is supporting someone at the end of life. I am pleased that the minister has taken that on board and look forward to his stage 2 amendments.
In that context, Marie Curie Cancer Care points out that the bill as drafted will not support carers whose caring role has come to an end, for example following bereavement, and asks the Government to consider an amendment to ensure that support is available for people as they make the transition away from their caring role.
Guidance is also required to give all carers an understanding of the expected timescale for receiving an assessment after one is requested. That should be reasonable and should ensure some consistency across all councils so that all carers receive a support plan as soon as possible. The bill would place an explicit duty on councils to provide support to carers who meet eligibility criteria and would give discretionary powers to support those who do not. Those criteria would be set locally.
It is fair to say that that proposal was met with a sharply polarised response from witnesses, with carers very strongly in favour of nationally set eligibility criteria, to ensure equity across Scotland, and council representatives wanting them set locally. Although the Government is satisfied that its proposals are appropriate and the minister has pledged to work with all stakeholder groups to share ideas and opinions about eligibility criteria, I have no doubt that we will hear a lot more about that issue at stage 2.
Of great importance to carers is the availability of an information and advice service that is local, independent and expert. Such services are already provided within the third sector. There is a strong feeling that the focus should be on funding and supporting them and that new services should be set up only where necessary. Therefore, I look forward to the Government’s promised stage 2 amendments to clarify that, where such a service is already available locally, there is no reason to duplicate it, although the local authority will be required to ensure that it is maintained.
The bill would move the duty to prepare a local carers strategy from health boards to councils, and many of our witnesses felt that there should be a greater role for the national health service in identifying carers and signposting them to services and support, particularly in light of the continuing integration of health and social care. Again, I look forward to seeing the Government’s promised stage 2 amendments to give effect to that.
There is also a call for the bill to include a duty on health boards to involve carers in hospital admission and discharge procedures because of valid concerns that a crisis can develop if, before discharge, hospital staff do not identify carers and establish that they are willing and able to provide the necessary care. I hope that the Government will consider that.
There are particular issues with young carers, who are less likely to identify themselves as carers and who, depending on their age, may not realise that they are carers. There is a general welcome for the young carer statement but, as Rhoda Grant said, a lack of clarity as to how it will link to the child’s plan. There are also concerns about information in the statements being shared with a young carer’s named person. The young carer should have control over where that information goes.
There are several other issues that I do not have the time to deal with in detail, such as emergency planning, but I cannot conclude without reiterating the many concerns that have been expressed about the estimated costs of implementing the bill and the Finance Committee’s serious concern about how, with the current proposals, charges can be waived for services that support carers, including the replacement care that is often required to enable them to take the short breaks that are essential if they are to be able to continue their caring roles without detriment to their wellbeing. Those financial issues simply must be resolved if the bill is to be effective.
As I said at the outset, we will support the general principles of this important bill but there is clearly still some way to go to ensure that it becomes the effective piece of legislation that the Government envisages in its policy memorandum.
We move to the open debate. We have a modest amount of time available, so speeches will be six minutes or thereabouts.
15:12
Two things unite the chamber in relation to the bill: first, the fact that we welcome its intent; and secondly, a shared desire to ensure that, when it is finished with, it delivers as much as is feasible to improve the lives of carers.
Measures that lead to the better identification of carers and their needs, and the placing of a duty on local authorities to support carers in a variety of ways, are as welcome as they are needed. The reduced budget that is available to the Parliament and, in turn, local authorities restricts our ability to go as far as we might want in giving carers the kind of deal that they deserve. However, the Government’s commitment to increasing the carer’s allowance and its success with pushing the United Kingdom Government to introduce amendments to the Scotland Bill to provide autonomy over defining carer’s allowance eligibility, coupled with the bill, are evidence of the direction of travel to which the SNP is committed as far as carers are concerned. I acknowledge that there are many MSPs in other parties who share a desire to create a framework that better recognises and supports carers’ work.
I commend the stage 1 report that the Health and Sport Committee has produced. I say that not because I am currently a substitute member of the committee—I played no part in the scrutiny process—but because it is an excellent piece of work. I also welcome the Scottish Government’s response to it. We started out on the right track with the bill. The committee and the minister, in his response to the report and his opening speech, have given fresh impetus to that journey, although there remain areas of the bill in which there is scope for further improvement.
The Government’s intention to lodge amendments to ensure that adult carer support plans and young carer statements will contain information about emergency planning is as welcome as it is necessary. Anyone with the slightest knowledge of carers recognises their concern about what would happen if they had to go away or into hospital and the anxiety that it causes. The planned stage 2 amendments on setting timescales for preparing adult carer support plans and young carer statements in cases in which the cared-for person is terminally ill is similarly a step in the right direction.
The point of the scrutiny process of which the debate forms part is to consider how we might further improve the bill. There are a number of opportunities in that regard. Waiting times for adult carer support plans and young carer statements are one of those, as is the duty on hospital discharge.
I am concerned that no national time limit has been set for the production of a carer’s assessment. As we know, there can be wide variations in performance in that area and, to be frank, ridiculous delays that stretch to not only months but years. Through the bill, we need to send a message that we want greater consistency that reflects best practice. I am not sure that, on its own, the inclusion of intended timescales in each local carer strategy will deliver that.
The issue of hospital admission and discharge is dealt with well in paragraphs 106 to 108 of the stage 1 report. I note what the minister says in his response about the bill’s provisions supporting the involvement of carers in hospital admission and discharge procedures and his view that the accompanying guidance will highlight the importance of involving carers in that process, but twice in his response the minister uses the phrase
“where it is reasonable and practicable to do so”.
Although I do not doubt his intention in this area, I wonder—as Duncan McNeil did—whether we need to strengthen this part of the bill. Who will determine when the circumstances are such that it is “reasonable and practicable” to take the views of the carer into account? Will it be harassed ward staff or the busy social work team member? I share the concerns that carer organisations have expressed that the reality might differ from what is intended, and I hope that the issue can be considered again, difficult though it might be to nail it down. The minister has agreed to lodge amendments to put beyond doubt the role of the NHS in preparing local carer strategies and identifying carers, and I wonder whether we might be able to tighten things up in this area, too.
In a similar vein, although I do not necessarily seek an amendment, I note the committee’s comments on the role of general practitioner practices in identifying and supporting carers. I appreciate entirely that GP practices are under considerable pressure and welcome the fact that carer identification will be covered in the guidance, but if, as I have found in my constituency, some GP practices will not even display posters that direct patients to carer support services, there might be work to be done in ensuring that they go beyond even that basic action.
As Nanette Milne did, I want to touch on an important issue that Marie Curie has raised about supporting the needs of those carers whose caring role has come to an end. As Marie Curie says, many carers will need support after they have finished caring. I know from my work locally with the carers centre in Arbroath and from hosting visits to Parliament by carers from all over Angus that the support network and camaraderie on offer, never mind the advice and practical assistance that are provided by staff from such organisations, are vital in helping people to cope with their caring responsibilities. There is also surely a need for people to have access to such provision when those responsibilities end and they seek to move on in their lives.
The Angus carers centre in my constituency extends access to its services for two years after the person’s caring responsibilities have come to an end. I would be interested—as I am sure the minister would be—in finding out whether that is typical across Scotland. If it is not, perhaps we need to explore how we can provide support to former carers in that position.
I hope that the minister takes my contribution in the spirit in which it is intended; I am sure that he will. As I said earlier, the bill as drafted provided an excellent starting point. The Health and Sport Committee’s stage 1 report, along with the minister’s response to it, offers to move it along. With the will to take that further, which I am sure exists, I think that we can end up with a piece of legislation that has the potential to make the kind of tangible difference to the lives of carers that we all want to see.
15:17
We know that there is across the chamber significant support for carers. Some of us have been carers or will be in the future. We have certainly met people in our communities who take on the most immense burden in difficult times, and they have our admiration.
Out of love—although occasionally people are caught up in a caring role by accident—carers go far beyond what most of us can imagine in disrupting their lives to give people the care that they need. There is no doubt that, since the Parliament was established, carers’ voices have been heard. They have been at the heart of many of our debates, and the campaigning organisations and the carers should be congratulated on how effective they have been.
However, we face a challenge in relation to the Carers (Scotland) Bill. We need to ask whether, as well as hearing what carers say, we are listening to what they tell us. We will be damned if we settle for rhetoric without delivering on carers’ aspirations. There needs to be a will to make a difference. If warm words put food on the table, carers would be feeding on a banquet every night. That is a challenge for all of us.
I am proud of the work that Labour did when it was in power. I am particularly proud of the establishment of carers centres, which represent an understanding of the need for flexible support and which reach out to and support people when they are in circumstances in which they find it difficult to get through processes. I pay particular tribute to south-west Glasgow carers centre in my constituency. As well as providing practical support to carers, including young carers, it supports people who no longer have a caring role and offers friendship to people as they come to terms with bereavement.
The centre has highlighted a number of specific points—as it often does when I meet it—that it would be useful for me to raise with the minister. I want to raise points from the cross-party group on carers and, if I have time, I will make a number of broader observations about the bill.
Many carers have expressed frustration because some of the care support that they need is not big stuff. They may need time to go to the hairdresser, the library or church, or they may need to spend a little time with their friends. There is frustration that access even to a bit of respite or support can often involve a long and complicated process, which in some cases is more expensive to fund than the cost of the support.
There is the example of a woman who cares for her husband and who wanted to go to her granddaughter’s wedding. It took more than nine months to establish whether she would be able to get that time off. Even then, she lacked the confidence in the care that was going to be offered to her husband to allow her to go to that wedding. Surely we can find a process or establish a fund to provide small amounts of money with speedy access, which would make a huge difference to people in their ordinary lives and help them to sustain their caring role.
Problems with the carers information moneys have also been highlighted to me. I understand the plan to take those moneys from health boards and give them to local authorities, but there is a concern that the moneys have on some occasions been handed back unspent and therefore that the opportunity has not been taken to support carers. What mechanism has the minister considered, with the planned change to local authorities, to ensure that the funding gets as close to carers as possible, does not get lost in the process and is directed towards those who need it most?
Practical issues that relate to young carers need to be addressed, including attendance conditions on education maintenance allowance in schools. Work has been done to ensure that colleges and universities understand the particular barriers that young carers face. They need the liberation and support of education almost more than most young people do, and we should ensure that we talk to authorities about that.
Like others, I accept that there is support for the bill at this stage, but that cannot in itself be enough. We need to be honest about the tough context in which carers are working. I have been struck by the dilemma that emerges in the bill with the proposal to open up the identification of carers and the assessment of their needs. I understand the rationale behind early identification, but we must reflect on the fear that has been expressed that such a broadening might dilute the support that is available to carers who are already in need.
In truth, a right that is unenforceable is unacceptable. We need not just to declare the right but to will the means to deliver. That is a practical challenge for the Government and the minister. It is not good enough for us to create a right and then sit back and denounce local authorities when they fail to deliver it.
I acknowledge the emphasis on identifying young carers, which can be a challenge. In my last teaching post, when I worked to support young people to stay in mainstream education, I met many young people who were carers. Some of them were carers entirely inappropriately. I know that understanding of a young person’s situation—they might be reluctant to talk about the reality of their family life—is more likely when there is a strong guidance team, a strong attendance officer team, behaviour support, learning support and classroom assistants. Those people have the intelligence and understanding to reach out and see that a young person is perhaps struggling because of what is happening in their home.
One of the worst moments that I had in teaching was when I chastised a young girl for being late every morning—she came into my class late each day—because no one had informed me that she was a carer. That was absolutely awful, and that is where the system breaks down.
I will make two brief points. In giving our teachers information, we need to have more confidence that they will treat it professionally. If they do not do that, we should definitely deal with that, because they will have behaved inappropriately.
I am making the point that the intelligence in schools is often garnered not simply by teachers. At this moment, our schools are being stripped of such support because of the pressures on their budgets.
We need to see carers in the context of the real world, which is increasingly stressful. If they are working, their tax credits may be removed, and employers are demanding increased flexibility of them. Zero-hours contracts and people being available for longer means that they cannot guarantee that they can care for their loved one. People are being forced out of work because of a lack of proper support.
I raise the particular problem of kinship carers in my city. I am sure that the minister is aware that 32 per cent of all children who are supported in kinship care situations are in Glasgow. I ask him to look again at the funding that is needed to match our aspiration that kinship carers should have parity with foster carers. I ask him to give me a guarantee that we will not all just sit and blame one another for that situation. We need to work together to get a solution for kinship carers.
We understand the central role of local authorities in offering support for carers. It is therefore essential, whether it is in health, education or social work—wherever it might be—that we are honest about how we will ensure that local authorities are properly supported.
Across the Parliament, we have a responsibility on this. If we are saying that local authorities must deliver good-quality care, we need to take a fundamental look at how we regard local authorities and how we fund that care. That is a key commitment for any bill through which we want to provide increased support to carers.
15:26
I welcome the Carers (Scotland) Bill and the fact that, after many years of everyone in the Parliament coming together to get the best rights for carers, we are now considering a bill that will enshrine carers’ rights in law for the first time in Scotland.
What many people, including the minister, have said is absolutely right: implementation is hugely important. That covers implementation at the start, but there are also on-going matters such as monitoring, funding, guidance, regulations and the mix of guidance and legislation. I hope that the minister is having discussions with COSLA and local authorities as to how the proposed measures can best be implemented and monitored.
For any bill, the stage 1 debate is a really good opportunity to raise particular issues, perhaps including missed areas for improvement and the identification of unintended consequences that sometimes come up. The Health and Sport Committee’s report highlighted some of that. The commitment that the Government has made to lodging stage 2 amendments, including amendments on emergency planning, is welcome.
I wish to discuss two kinds of carers, to ensure that their circumstances have been fully considered in the consultation process and the drawing up of the bill for introduction. The subject of carers of adults who have learning difficulties has been raised many times by me and by other members over the years. There are particularly active elderly carers in my constituency of East Kilbride who have very much helped to force improvements.
The example of parents who are carers of their adult children with learning difficulties puts into stark relief some of the needs that we are discussing. Support plans are absolutely necessary. There is an issue about no statutory timing being specified for introducing support plans. That is hugely important when we are considering particular categories of carers, and the carers of adults with learning difficulties represent one such category.
That leads us to emergency plans. For many years, we have talked about the good practice of having crisis plans and emergency plans, but the theory does not always translate into practice, and I have seen examples of that. We might consider the stress that is experienced by someone who is 80 or older, for instance—as I know—from the absolute terror of something happening to them and of their child who has a vulnerability, regardless of their age, coming home to find that their mum or dad is not there any more, with no proper plan in place. That is a huge stress for carers to deal with. I would like support plans and emergency plans for that category of carer to be given absolute priority. That is very important.
I wish to mention another matter, which I think that Duncan McNeil raised.
Does the member agree that, as part of health and social care integration, it is vital that emergency plans are on GPs’ records? When the individual—the parent or other adult—is admitted, it makes life a lot easier for everybody if the GP knows that they can call on an emergency care plan.
I absolutely agree and I was going to come on to that. This is about a joined-up way of looking at health and social care. I notice that Inclusion Scotland has a concern that, because carer support plans will be statutory, they will take precedence over social care packages, which are discretionary.
We have to make sure that we really have a joined-up system that benefits the people who need it. That is very important. We started well with the integration of health and social care; here is another way that we can look at preventative measures against stress and crisis.
The other group of carers that I will bring up is one that I have fairly recent knowledge of. I had not thought this issue through before, but I have been giving it a lot of thought because of circumstances in my constituency. It is about the families of those who end up suffering from early-onset dementia.
We have to talk about dealing well with people who have dementia generally, but particular issues arise when someone has early-onset dementia. The person who is affected could be in their 40s or 50s—even in their 30s—so their partner is still working and has a career. Again, the issue is about the interaction between social care—the home care package—and the caring responsibilities that the partner, or adult children in the house, may have. We have to get that right.
We should not assume that someone will give up work to be a full-time carer. That may well not be in the best interests of the person who requires the care. A constituent said to me, “I want to take her on holiday and take her out and about. I want to be able to afford to do those things in older age through my pension, because she loves it; it gives her a great sense of wellbeing.” That is hugely important.
We have to look at the needs of the person who requires care and the needs of the carer and take full account of what is best for the wellbeing of that entire family unit. I am calling for consistency in how we deal with such things and a recognition that not every case follows the textbook and can have a box ticked to say that it has been dealt with.
Another constituent of mine has caring duties for a parent who has dementia and for a child who has special needs. The on-going difficulty for her is that two branches of the same council social work department do not communicate, which means that she never gets a day off. There must be better ways of doing things, through carer support plans, although that can happen only if we know that the plans will be put in place timeously.
15:33
The bill has the potential to improve the lives of thousands of people. We have an opportunity to change the way in which carers are regarded and supported and to make their lives, and those of the people for whom they care, easier.
Members have talked about the changing demographics in Scotland. The pensionable-age population is projected to grow by 47 per cent in some areas over the next 25 years. It is great news that people are living longer, but we need to ensure that they are healthier, too.
Carers, paid and unpaid, take on a large part of the responsibility of caring for elderly people and people with mental health problems or disabilities who are not fully capable of taking care of themselves. Nearly 800,000 carers in Scotland provide support to loved ones, at an estimated value of about £10.3 billion. The figure is made up of 745,000 adult carers and 44,000 carers who are under 18.
While it is important for care to be delivered at home and to be consistent, we need to recognise the negative effects that caring has on people. I am glad to support the principles of the bill that will provide carers with a layer of support and protection.
The Scottish health survey analysis of mental wellbeing among carers showed that mental wellbeing scores decrease as hours of care increase. With 177,000 people over the age of 16 providing more than 35 hours of care each week, there is clearly a need to act proactively and prevent a decline in their mental wellbeing.
I look forward to seeing the successful implementation of the relevant bill provisions for adult carer support plans and young carer statements, which are a vital starting point. We have to make sure that the mental health of carers is in good condition. Unfortunately, as we know, it is not easy for people to obtain timely treatment. I have repeatedly called for preventative spending on mental health and I want to see such spending and to see relevant services and treatments available for anyone who is also a carer.
Similarly, the Coalition of Carers in Scotland warns that the waiting time for an adult carer support plan must be cut. Timescales must be spelled out and reasonable, and the plans must fulfil the purpose of supporting carers. Putting carers through completing unnecessary paperwork and more waiting time is the last thing that they need on top of all their responsibilities.
On the young carer statements, it has been mentioned that there need to be stronger systems for advocacy, redress and appeal, and young carers need to be more involved in the development of their statements—that is one of the preventative measures that we can take to ensure that young people have a say in their plans. I support other similar provisions in the bill, such as supported short breaks, replacement care and the right to advocacy, especially for young carers.
However, I am aware that a common thread of concern has been the postcode lottery for some services. Health inequalities will not reduce if we compound them with the unequal treatment of carers. Should the bill proceed, and I am sure that it will, I would like to see that we are taking the right steps to address issues such as local eligibility criteria that might undermine need because of financial restraints in an area. When we can ensure that decisions are taken locally, we must empower carers and councils to take them, but we must make sure that equality is prescribed in the law; otherwise, we risk seeing further growth in health inequalities.
Carers belong to a special group of people who we cannot allow to remain on the margins. Their concerns must be taken at face value. I hope that, when health and social care integration goes live next year, it will act as a gateway for increased involvement.
General practitioners might have a role to play through identifying carers and signposting them to services and support as a first step. I believe that that is one of the main concerns of national carer organisations and that current strategies, such as the national carers strategy, have not taken that on board yet.
Subsequently, it is useful to involve carers in NHS processes such as those for hospital admission and discharge. That saves time and money and is better for the patient. There are calls and proposals for further involvement and a responsibility on health boards to inform and involve carers in their decisions about hospital admission and discharge. It has been proven that carer involvement reduces the need for readmission, as carers know best what the person for whom they care needs in their daily life. I stress that that must include both adult carers and young carers.
Like the majority of individuals and organisations that support the principles of the bill, I just want the details to be set out at the outset. We can achieve that by taking into account the views of the numerous organisations that represent carers rights and the views of the carers parliament. I hope that the bill will proceed to stage 2, when views on how to strengthen and improve it will be welcome, and I look forward to being part of that.
15:39
I am pleased to speak in the debate. Although I am not a member of the committee that took evidence on the bill, it is important to me and the many groups and constituents I represent that we look at the rights of adult and young carers. As has already been said, we have an estimated 745,000 adult carers and 44,000 young carers in Scotland. I really think that it is incumbent on us as individual parliamentarians and on the Parliament as a whole to encourage and empower carers of all ages to exercise their rights.
As I said, there are an estimated 745,000 adult carers in Scotland. Although the group of adult carers on whom I want to concentrate makes up a small percentage of that number, I think—and I am sure that most people would agree—that they are an extremely important group. Linda Fabiani spoke passionately about this issue with reference to one of her constituents.
As convener of the cross-party group on older people, age and ageing, I am acutely aware of the position, to which Linda Fabiani referred, of carers who are over the age of 70, and indeed over the age of 80, and who are themselves caring for older people—some are pensioners, some are just older people and some are people with disabilities.
Rhoda Grant has been present when older carers have come along to our cross-party group to tell us about the great difficulty they have in getting care for their adult children—as Linda Fabiani said, it does not matter what age their children are, they are still their children. It is very difficult for an older person who is caring for another older person to get care breaks or respite.
I recognise that money has been put into the reshaping care for older people change fund and, specifically, into its carer component. That has made a big difference to the many groups and projects—I will not name them—that involve carers in shaping services and developing local strategies and which generally provide a better quality of life for carers and those for whom they care.
Nanette Milne said that we really need to look at strategies. I hope that the involvement of carers—particularly the group that I am talking about—in developing strategies, which has been so successful throughout Scotland, will continue once the duty on local authorities to involve carers comes in—I am sure that it will. Will any checks and balances be put into the bill through amendments to ensure that carers continue to be involved in developing strategies in the way that they are already involved? It will be interesting to see whether such involvement continues once the duty is placed on local authorities. Perhaps the minister could cover that in his closing remarks.
Rhoda Grant mentioned the important issue of short breaks, which we always called respite—I think that they are still called that. Nanette Milne referred to the Finance Committee’s comments about that. The issue involves COSLA, carers and those who are cared for. Does the minister have an update on the position? We need to find out exactly what will happen, not just to the carer who has a short break or respite, but to the people who are being cared for. The bill takes into account carers of all ages, but the issue of the small percentage—it might not be that small, in fact—of carers who are 80, 82 or even 84, which is not raised that often, should be put at the top of the agenda when we look at the respite component.
I will raise an issue that I do not think has been mentioned yet. The Smith commission recommended that the Scottish Parliament should have complete autonomy over eligibility for carers allowance. That is really important, particularly given the amendment to the Scotland Bill that has been tabled recently, which I hope would achieve that proposal—a proposal that the Scottish Government made in the first place.
I do not know whether the minister can find this out, although I am sure that we will find it out once the matter is debated at Westminster, which will happen on Monday, I think. Can we get an absolute assurance that elderly carers who are pensioners and who get benefits and other entitlements will not miss out on those entitlements because of the eligibility criteria for the new carers allowance? It is important that everyone is entitled to that. I would not like to see a situation in which someone may lose out if they get another benefit over which we have no control. The issue may adversely affect the benefits of pensioners who care for a son or daughter who is also a pensioner. I will leave the minister with that thought.
15:45
Other members have spent much time on particular provisions of the bill and the importance of supporting carers. I do not want to repeat what they said, but we have had powerful speeches from Duncan McNeil, Johann Lamont and others across the chamber. Instead, I want to spend my time looking at the bill’s financial aspects. I do so with a genuine concern that there may be insufficient resources to meet the expectations that have rightly been raised by the bill.
I have two carers centres in my constituency—the Carers of West Dunbartonshire centre and the Helensburgh & Lomond Carers centre. Without question, both do a tremendous job. In both cases, the numbers of carers whom they support is constantly increasing.
There are about 10,000 carers who live in West Dunbartonshire—per head of population, we have the highest numbers in Scotland, according to the latest census. West Dunbartonshire also has the highest number of people per head of population with one or more long-term conditions, a high proportion of whom are carers who manage their own health alongside undertaking their caring role.
Last year, Carers of West Dunbartonshire supported 1,060 individual carers, of whom 385 were new referrals. The organisation also dealt with about 4,600 inquiries, and demand for its services is rising. Helensburgh & Lomond Carers supports 800 carers overall, and the number of new carers who registered with the organisation was 91 last year. However, we are only just halfway through this year and that number has been exceeded already, so demand for its services is also rising rapidly.
Although it is great news that both centres are reaching more carers than ever before, funding is becoming increasingly difficult. Year-to-year contracts, uncertainty about future funding sources and the consequent effect on staff retention are making things incredibly difficult for organisations that deliver for carers, and we need to find more effective ways of supporting them.
Funding for the very successful young carers initiative at the Helensburgh & Lomond Carers centre comes to an end in April 2016. The organisation has been unable to secure funding to continue that valuable service, leaving 150 carers facing a future without that essential support.
As I understand it, and as members will be aware, carers information strategy funding finishes in March 2016. However, the information that carers centres have received suggests that funding for the bill will not kick in until 2017, and it does not take a genius to work out that there is a gap. As far as I am aware, not a great deal has been said about that, which is making people nervous about what will happen between 2016 and 2017. Core support posts for carers are funded through the strategy, and the concern on the ground is that the posts will be terminated unless transitional money is made available to bridge the gap. When the minister sums up, will he advise the chamber what provision will be in place from April 2016 to April 2017 to avoid that unnecessary and disruptive interruption to the service?
I understand that the guidance that accompanies the bill is likely to say that there will be money for two additional posts. The carers organisations that I have spoken to are genuinely concerned that in fact those posts are not additional. We can all agree that raising awareness will undoubtedly be one impact of the bill. However, it is just not tenable for carers organisations to cope with the rising demand that I have described with a standstill staffing assumption. It is not just that they face rising demand now, and even more so in the future; the carers with whom they deal require more contact and more intense support than before. Although the Carers (Scotland) Bill is absolutely welcome, it might be undermined if support in the community is depleted or vanishes. I would be grateful for the minister’s comments on that in his closing speech.
The minister will be aware that the Finance Committee thought that there were deficiencies with the financial memorandum and that the required clarity over costs was not what we would have wished it to be. I suspect that he shared that view. When the committee suggested that a supplementary financial memorandum be brought forward between stages 2 and 3, the minister agreed. However, he then changed his mind and said that he would introduce proposals through secondary legislation to give effect to the waiving of charges and would put the financial consequences in a policy note. Members will appreciate that such an approach is without precedent.
I therefore welcome the further clarity that the minister provided in his letter to the Finance Committee on 26 October, in which he said that the cost of replacement care will be a maximum of £16 million per year from year 1 of the bill’s implementation, and that the £16 million will aim to meet the cost of any additional replacement care that is put in place to meet carers’ assessed needs.
However, I confess to being confused. Am I right to assume that that money is to cover what is already in place, which is welcome, or is it about how we meet new demand? Given the minister’s announcement, does he intend to bring forward a supplementary financial memorandum, and does he now not need to bother with regulations and the financial information in the policy note?
The minister said that the £16 million
“can be accommodated in the overall cost envelope ... set out in the FM.”
Carers organisations are very concerned that that leaves very little remaining in the financial envelope for everything else. The national carers organisations are concerned that it takes no account of any new demand that might arise from the increased number of adults and young carers who will receive an assessment.
According to the financial memorandum, in year 1—in 2017-18—the Scottish Government anticipates spending £19 million. If the £16 million cost of replacement care is to be found from within that amount in 2017-18, that leaves a mere £3 million for everything else. I hope that the minister will tell me that I have done my sums wrong and will provide the reassurance that everyone out there is looking for.
The bill will raise awareness and expectations, but on the evidence before us there may not be sufficient resources to turn the good intentions that I know the minister has into reality. Members on all sides of the chamber have recognised the important work of carers, and we must back that up with the resources to enable carers to do their job.
15:52
There is a lot of good in the bill. Carers’ rights will be fully enshrined in law for the first time. We are broadening and widening the definition of a carer, and easing the threshold for providing a caring role. There will be a more systematic process of assessing carers’ needs and providing support for them.
We will place a statutory duty on local authorities to involve carers and their representatives in the planning and delivery of support. There will be yet further progress to expand short breaks and a break in caring for carers. That will happen, and the bill will drive progress in supporting both adult and young carers. What we are talking about this afternoon is the extent of that progress, and the extent to which we will improve the lives of carers.
It is surely a good thing that additional moneys are being provided. The lives of carers will be improved; we are simply debating the extent to which their lives will be improved, and we should embrace that on a cross-party basis in Parliament this afternoon.
Of course there is a financial context to the bill. I will not be drawn into the yah-boo politics of yesterday and today at First Minister’s questions with regard to the financial constraints on this Parliament and the cuts that are coming down the line. However, we cannot deal with the financial reality across all sectors of Government without looking at the entire funding package to Scotland from the UK. Of course it will be tough to deliver, implement and fully fund the bill, but the Scottish Government is committed to doing so and to improving the lives of carers. That is just a fact. More money is being provided: that is also a fact.
Johann Lamont, who is not in the chamber at the moment, said earlier that the needs of kinship carers had not been met. I double-checked my facts and saw that the Scottish Government announced on 10 September that £10.1 million was being given to councils to raise kinship care allowances to the same level as those for foster care, benefiting 5,200 vulnerable young children, many of whom are in the constituency that I represent, so Johann Lamont was just wrong.
Will the member take an intervention?
In a moment.
I note that Jayne Baxter is in the chamber. She, too, has championed the cause of kinship carers. Undoubtedly, since 2007, when the SNP Scottish Government took office, there has been huge progress on a cross-party basis.
Notwithstanding the member’s comment about that cross-party basis, he has drawn attention to the fact that the Government has put money in place for kinship carers. However, it is my experience that some Labour councils are not taking that money and getting it to where it is supposed to go, which is to the kinship carers. Certainly, that is the case in Dumfries and Galloway. I wonder whether it is also the case with the Labour council in Glasgow.
I have to say that progress has been made with the Labour council in Glasgow, which used to give no money to the kinship carers of looked-after children. Members will remember Steven Purcell; it was my intervention with him that got an allowance—£40 a week—for kinship carers for the first time in Glasgow. I agree that there is more to be done in Glasgow, but progress has been made. Given that I might criticise the local authority later in my speech, I have to give it credit where it is making progress.
I want to look at the details of the bill now and the increase in the number of adult carer assessments and young carer support plans that will be generated by the bill. I am glad that the minister has addressed today the resourcing concerns in that regard. I am also glad that the minister’s response to the Health and Sport Committee makes it clear that local authorities will be able to prioritise how quickly they address some carers’ assessments and young carer support plans. We still want more detail on the expected timescales around that, but I note that the minister said that the publication of the expected timescales by each local authority will drive consistency. That might be the case, but at some point we might have to take steps to ensure consistency.
I have a suggestion in relation to the drawing up of carers’ assessments. The Health and Sport Committee is currently undertaking an inquiry into palliative care. I wonder whether the minister would give consideration to ensuring that, whenever carers’ assessments are drawn up, those assessing the care give cognisance to whether carers are providing palliative care that has not been identified; and to whether, if that is the case, that could drive change in that sector too. If we could do that, it would be very important.
The committee looked in some detail at eligibility criteria. I found that there was a lot of confusion among stakeholder groups about eligibility criteria, and what would be national and local. There was also confusion about what the threshold would be to receive care or care support, and what the level of care or care support would be. It was my understanding—and I think that it was the committee’s—that we were not saying that every local authority in the country would provide the same level of support. The committee was looking to ensure that those with similar needs all had support provided at local authority level and that local authorities had the flexibility to prioritise the level of support that was available. Perhaps that is something that we have to look at as well.
In relation to information and advice services—this is an important point—some third sector organisations said that they were worried that the requirement for information and advice services might lead to local authorities tendering or contracting out existing contracts and undermining the third sector organisations’ role. I am delighted that the minister has made it quite clear that that is not the situation and will not be the case, and that that will be clarified through a stage 2 amendment.
However, local authorities have form in that regard. This is where I will mention Glasgow City Council, which I said earlier to Joan McAlpine I would do. Local authorities have been known to abuse Scottish Government legislation, namely the Social Care (Self-directed Support) (Scotland) Act 2013. Very vulnerable adults with learning disabilities were forced into a personalisation agenda and key services were withdrawn from them; when they were asked why, they were told that it was because of the Scottish Government’s self-directed support legislation. That was just wrong. We have to ensure that there are no unintended consequences of the bill. That is why it is very important that at stage 2 the Government lodges that amendment in relation to information and advice services.
I know that lots of things regarding the bill are important, but I promise that the final thing that I would like to say is vitally important. There is much discussion about how we can better support carers in relation to hospital admissions and discharge, and about how we can ensure that they are part of the processes. However, we do not talk enough about how people who come into hospital might be carers who have yet to be identified. An admission of someone to hospital should be a trigger to identifying whether they are an unidentified carer, and a carer’s assessment should be offered. We have that opportunity with the bill.
The bill will improve the lot of carers. Let us get together as a Parliament to improve and enhance the bill and deliver for carers, who do a vital job in Glasgow and right across Scotland.
16:00
I am not a member of the Health and Sport Committee, so I have not been involved in the detailed scrutiny of the bill, but I am very pleased to speak today about what is a very important bill. If we get it right, it has the potential to transform the lives of carers and, by association, those for whom they care across Scotland.
Estimates vary, but it is widely accepted that there are almost 800,000 carers in Scotland. According to Carers UK, the economic value of that unpaid care is in excess of £10 billion. The emotional value of such care is incalculable.
Many of us will have witnessed or indeed had our own experiences of the role that carers play. If one’s friends or family were affected, few would hesitate to help. However, the responsibility of caring for a vulnerable person often goes way beyond helping. It can be more demanding and stressful and go on for much longer than carers can manage without additional support. The care that is needed and provided is vital and is too often not apparent to others. As a consequence, the value of that care is not always recognised. Too often, support service providers do not even know that someone is a carer. People often care for loved ones alone, with little or no external support or engagement with support services. We need to identify carers at the earliest possible stage, so that they know what support is available to them. It is common for carers who have additional support needs not to be identified as such.
Underpinning how we can change that for the better is the importance of the NHS in preparing carer strategies. The NHS can provide a great deal of support for not just the person who is being cared for but carers themselves. Far too often, however, carers are not aware of the support that is available to them. In the interests of both the cared-for person and the carer, the centrality of the NHS to supporting care and carers needs to be formally recognised in the bill.
In considering the issue of carers being invisible, I want to say something about young carers. Ever since I was a councillor in Fife, I have supported the campaign to recognise the important role that is played by those young people. I did not have much experience of them when I became a councillor, but Fife Council ran an awareness-raising campaign for staff and councillors. The council knew that, although it was likely that there were thousands of young carers in Fife, very few of them were known to the services that could support them. Although young carers have a right to privacy of course, it is important that they realise that they are not alone, they have rights and there are services and people who will help them. We have to encourage young people who have caring responsibilities to come forward and we have to train the staff who work with young people to learn how to recognise the signals that a young person might be a carer, and then to respond appropriately to the impact that those caring duties may be having on the young person’s quality of schooling or personal development. I was struck by how isolating being a carer must be for many young people and how we all can and should do better to change that situation.
This year, I had the privilege of working with the Carers Trust and young adult carers to launch their going higher campaign to extend a similar approach throughout colleges and universities. As I said at the launch of the campaign, it seems perfectly reasonable that educational institutions would adopt a person-centred approach to ensure that everyone fulfils their potential. We should do the same, as a Parliament and as a society. The starting point has to be the situation facing each carer, and from that we must put together the right package of support.
This bill as it stands is a good starting point. It aims to provide a framework for recognising and supporting carers and to improve identification of adult carers and young carers. It places duties on local authorities to support carers, develop and publish local carer strategies, make provision for carer involvement and provide information and advice services to all carers. However, many of the briefings that I have read argue that the bill does not go far enough, or that it does not offer enough detail. There are concerns about the lack of timescales for the production of adult carer support plans, about the inconsistencies and the potential for a postcode lottery in the eligibility criteria for carer support, and about the levels of finance and choice to be provided for respite short breaks.
It is clear that what is needed is a coherent, multi-agency approach for most carers. I do not think that anyone disagrees about that need, which has been discussed many times in the Parliament, but I sincerely hope that the bill will go further, as it proceeds, and foster such an approach across Scotland. Currently, it focuses excessively on the responsibilities of local authorities and insufficiently on what the NHS and other agencies including the third sector can do in addition to and in collaboration with local authorities.
It is right for the Parliament to support the bill at stage 1, but it is essential that, at future stages, the Scottish Government listens closely to the concerns that are raised by groups that represent carers, as well as by individual carers, to ensure that the bill takes a meaningful step towards improving circumstances for carers and those they care for. If the Government does not do that, the bill could be another missed opportunity.
16:06
I feel privileged to be allowed to speak in the debate. As usual, I start by commending my colleagues on the Health and Sport Committee for the good work that they have carried out and for their comprehensive stage 1 report on the Carers (Scotland) Bill.
I also welcome the detailed and supportive responses from the Minister for Sport, Health Improvement and Mental Health in his reply to the committee. He can correct me if I am wrong, but I counted at least six commitments to amend the bill at stage 2 after some lengthy and heartfelt evidence was given to the committee by stakeholders along the way. Also, a number of commitments were made to provide additional guidance, alongside the bill, to deal with the many clarifications that were sought by the committee on behalf of those who gave evidence. Like some other members who have spoken, I am not a member of the committee, but I hope that I will do justice to the work that others have done.
The bill is really about caring for the carers, and it sets out where we think help is most needed and where the most positive interventions might take place. I like the comment in the policy memorandum that the bill’s objective is to “make real” the Scottish Government’s ambition for Scotland’s adult and young carers to be
“better supported on a more consistent basis so that they can continue to care ... in good health and to have a life alongside caring.”
What a lovely way of simplifying the bill.
Does the member agree that, to make it real, which is something that we all aspire to, we have to get the money right, too? Does he share the concerns that have been expressed about the potential gap between our aspiration and the funding that is going to underpin it?
Absolutely. Of course we do. The issues about finance and resources are well covered in the committee’s report and I am pretty sure that the minister will refer to them in his summing up.
The need
“to have a life alongside caring”
is too often overlooked or ignored, and sometimes it is not even recognised by carers, as a few members have mentioned today.
As I read through the report, it became clear to me that the bill sets out a carer’s journey and that we can and should help along the way, from recognising the role of our younger carers and the help that they need from their schools right through to the possible end of a carer’s responsibilities through choice or circumstances. The bill and the committee recognise the important issues that we need to provide for.
Tonight is Guy Fawkes night, and thousands of carers across Scotland will be out there making sure that a loved one is enjoying the night at one of the many fireworks displays that will take place—I recommend the display at Kilmarnock’s Kay park, which will attract more than 30,000 people—or caring for a loved one at home and possibly missing out. That is why I was drawn initially to the committee’s comments on providing short breaks for our carers. It is so important to provide short breaks, even for a couple of hours, as the witnesses highlighted. I note that the minister agreed to clarify what “short breaks” means in response to the committee’s request.
Short breaks are not new, but if we can build in a mechanism that formalises them, it will mean that carers will not need to feel guilty about taking a break and those who are cared for will no longer need to feel guilty either, if their carer was previously unable to get one. A recognised short break is simple enough but very important. It helps to remove that problem and helps us progress the aim in the bill of supporting a life alongside caring.
I was staggered to read that the number of young carers in Scotland is thought to be more than 40,000, with a suggestion that it could even be as high as 100,000. Those giving evidence asked for more work to be done to identify our young carers, especially those at school, many of whom probably do not recognise that they are even performing the role. Often, those young carers need only a little bit of information and advice and a little flexibility when it comes to school timetables and attendance. They also asked that we should do our best to identify those young carers before any crises develop. Schools have a crucial role to play in that, and that too is acknowledged by the minister’s intention to set that out in guidance in relation to the development of our local carer strategies.
I would be interested to know whether any research has been done on the impact that caring has on the educational attainment of young carers and on what proportion of them move on to further and higher education. However, that is for another day.
The potential confusion in having the proposed young carer statement and a child’s plan was raised, but I think that the minister explained that well. As I understand it, the carers statement is about identifying specific support needs for the carer and the triggers for intervention, whereas the plan is an overarching summary of that.
There was a concern about the overlap between a young person’s role as a carer and the named person proposals, and the possible unintended intrusion that that might cause if a young carer had not consented to any interventions. The minister has recognised that and has agreed to remove that possibility from the bill at stage 2.
When young carers reach the age of 18 and begin to make their transition to adulthood, they will begin to interact with adult services in respect of their caring role. Clearly, many young people will want to move on and cease their caring role in order to progress their own lives, and I simply note the sensitive way that that is discussed in the committee’s paper and the minister’s recognition of the need to support such a process.
It has been a privilege to be able to take part in this important debate and to highlight for the public the many positive steps that are being taken by the Scottish Government to recognise the invaluable work that is carried out by Scotland’s carers. We care about their quality of life and their right to live their own lives in good health and have a life alongside caring.
I commend the work of the committee, the witnesses and the Scottish Government and look forward to the progress of the bill and to it becoming law.
16:12
I support the bill as a continuation of the considerable progress that has been made by Scotland in recognising and supporting carers in recent years. I particularly congratulate the minister on listening to the people, particularly Enable, who want the bill to ensure that emergency planning is discussed as part of the carer planning process. The minister will recall that I have spoken to him and his team about that on several occasions, so I share Enable’s delight in the success of its campaign. My sister has Down’s syndrome and is cared for by my elderly mother, and I know from their experience and from the experience of friends and other attendees at my sister’s day centre that it is a very important—perhaps the most important—issue that concerns older carers in particular.
The important statistical information that was published this spring, which was based on 2011 census returns, showed that the age group in which people are most likely to be carers is the 55 to 64 age group. However, it is not unusual, particularly with regard to learning disability, dementia and end-of-life care, for the carer to be in their 70s or 80s.
An example of the difference that an emergency plan can make is the case of Jeanette, which was highlighted by Enable in the course of the campaign. Jeanette looked after her daughter Vanessa, who has learning disabilities, but had no emergency plan in place until after she had to go into hospital for a knee replacement. Some time after she was discharged, she had an awful experience when she collapsed at home in the early hours. However, because she had a written emergency plan in place, the emergency services were able to consult the plan, contact the right respondent and get the right care in place for Vanessa. Jeanette said afterwards:
“I know people think they can go on caring, but things happen to change that and I would urge them to take the time to put a plan in place.”
The fact that Jeanette had that experience and was supported by her local authority draws attention to the fact that good services are already provided, but we need the bill to ensure that such provision becomes consistent across the country.
I also welcome the moves by the minister to prioritise plans for people who care for individuals who have a terminal illness, and I support the calls from Marie Curie and from other members that general practitioners should be involved in identifying carers who are in such circumstances. I am also very sympathetic to calls for carers’ views to be considered when discharge plans are being put in place by hospitals.
As the co-convener of the cross-party group on carers, I draw attention to the briefing from the national carer organisations, which welcome the bill but have certain asks in order to strengthen it. In my role as the co-convener of the cross-party group, I will put those asks on the record. They ask for the following: a redefinition of outcomes to acknowledge that carers have the right to a life outside caring; for national eligibility criteria; for a short-breaks duty to be placed on local authorities; for it to be ensured that replacement care is properly funded; for it be ensured that support services in the third sector and public sector are prepared for the additional demands that will be placed on them as more carers identify themselves and seek help; for a duty on the NHS to involve carers in discharge plans, which I have mentioned; for a statutory right to advocacy; and finally for a statement on equality.
Time restrictions mean that I cannot go into all those in detail, and I am aware of the cost constraints that mean that not every one of them will be delivered. However, if I had to single out one of those asks, it would be the request for nationally defined eligibility criteria. In my experience, among carers and their representatives there is passionate opposition to locally defined eligibility criteria, and they are consistent in their demands for consistency. In my opinion, the big three asks from carers organisations to strengthen the bill are emergency plans, the waiving of charges and national eligibility criteria. I welcome the fact that the first two of those big three asks are being addressed by the minister in his stage 2 amendments, and I ask him not to rule out similar measures to address the third.
I am aware that the Health and Sport Committee is sympathetic to both local authorities and carer organisations with regard to eligibility criteria, as it states in its stage 1 report. I note, too, that the minister, in his reply to the committee, says that, in 2016 and 2017, before the bill is commenced, the Scottish Government will work with COSLA, local authorities, the national carer organisations and carers themselves to share ideas and views about eligibility criteria. However, we have heard examples from members across the chamber of variation in services. There are some excellent services, as I have outlined in the case of Jeanette, but other members have mentioned their constituents’ poor experiences. The bill exists because of the patchiness in approach; we are legislating to address that. Therefore, it could be argued that nationally defined criteria for eligibility would be an extension of the general principles of the bill, which is why I think that the proposal should not be ruled out.
16:18
I am glad to join other members in speaking in the debate, although I am no longer a member of the Health and Sport Committee. Although I commend the bill’s intentions, I find myself once again questioning a bill that has been introduced. Carers deserve not just warm words, but detailed commitments, but once again we have a bill without draft regulations, although the regulations will be critical to delivery of the bill’s aims.
In hustings for the 2011 election that were attended by carers, I promised that if Scottish Labour formed the Government I would seek to ensure that our priorities matched those of carers. Labour had already sought to make it possible for carers to seek an assessment of their own health, which is fundamental and should not be a one-off event but a continuing process. A carer who is looking after a person with a deteriorating condition such as dementia is likely to face increasing challenges that make their own health more vulnerable.
Although the support plan helps, the thresholds, nature and extent are unclear. Concerns about a postcode lottery on thresholds are valid, as is concern about the length of time it takes for an assessment to be undertaken. That does not relate just to terminal care.
As the Health and Sport Committee has indicated, respite is another issue. Respite can mean many different things, from a period of a week or more to an hour or two a week. There needs to be clarity on thresholds, as well as minimum standards.
The committee is right to express its concern about provision in relation to terminal illness. That requires priority. One cannot wait when one gets into a terminal-illness situation; one needs action immediately.
The agreement to ensure that all carers who want one will have an emergency plan was one of the most significant asks in 2011. It led me, at First Minister’s question time, to ask the then First Minister, Alex Salmond, why that was not occurring. He undertook that it would occur. It is a pity that, three years on, we are still just talking about legislation. Linda Fabiani referred to parents of adults with learning difficulties. I cannot understand how anyone listening to carers who are growing old and have to look after their adult children would not hear their anxiety about what will happen if they have an emergency.
I have current family experience in dementia care. The social worker and carer support have both been very helpful, but my relative—the prime carer—is uncertain about whether a recent week’s respite care will be charged for or free. She simply cannot find out.
There are other areas of vagueness. There is an absolute need for carers to be advised of discharge from hospital and to be involved in admission. That is, of course, a requirement where there is formal incapacity, but in the case of patients with capacity, it must be addressed on a consensual basis. A recent Scottish study showed that 50 per cent of patients with a previous diagnosis of dementia before admission do not have that critical fact recorded on their notes. Too often, carers feel excluded by a medicalised process. As far as discharge is concerned, notification must be not just a general intention, but must be detailed. Never again can we have in the press reports such as that about a blind man being discharged in the middle of the night without knowing whether there would be relatives at home. Such situations are unacceptable.
The role of GPs in the new integrated world that we all seek remains unclear. Their knowledge and role is important. Where is the support for groups such as the Edinburgh north-west personal medical services group? Yesterday, I attended a meeting of the group. Representatives of 12 of 16 practices were able to be there, along with practice managers and various NHS Lothian staff. The group has link workers to undertake detailed assessment as part of post-diagnosis in dementia—an area that general practice has been tasked with. The quality of the carer and patient experience is measurably improved. That is an example of how a cluster in a new contract, in the new world that the Government is now beginning to accept, could work. I commend the work of the group to the minister.
We also heard reports from Muirhouse practice, which has established an effective computer-based signposting and information service for national and local support for carers. It is not rocket science, but it requires administrative support so that it does not have to be done on the basis of individual practices. As Graeme Dey said, at a time when general practice is under stress, the Government has a duty to make its intentions much clearer, not just on requirements but on resources. On finance, I do not believe that even the adjusted financial memorandum bears scrutiny. As I understand it, the £16 million is not new money, so what is it?
On dementia, there is a substantial drive for early diagnosis and first-year post-diagnostic support. If that is tied in to robust delivery of the aspirations in the bill, we can hope that fewer individuals will require institutional care, which would ameliorate some of the growing pressures on the NHS.
As in almost every intervention that I make in Parliament on matters of health and social care, I call for robust monitoring not only of the process but the outcomes. Who will undertake that role? Will it be the Care Inspectorate? What work has already been done on the elements that should be reported? Carers should not have to resort to their MSPs when their needs are unmet, so the right to advocacy is an important part of ensuring that issues can be resolved early.
However, I repeat that the landscape on comments, concerns and interventions from individuals when they have problems is incredibly cluttered. There is a vital need to align the Patient Rights (Scotland) Act 2011 feedback sections to the social care system. If that is not done, carers will not be able to contest their assessment, the timing of matters or all the other issues that colleagues have rightly mentioned.
The general principles of the bill are welcome. As always, the Government’s aspirations are welcome, but if they are to be fulfilled, the detail—the draft regulations on many aspects, the system of monitoring and the financing—must be much clearer before Parliament passes the bill at stage 3.
I have a few minutes left in hand, so I can give Mr Lyle up to seven minutes and then have one extra minute each for the closing speakers.
16:25
It is almost a pleasure to follow Dr Richard Simpson and respond to his comments. The SNP Government has a strong record on supporting health in Scotland and I am sure that it will continue to do everything in its power to ensure that the people of Scotland have access to the best healthcare that is available and to ensure that no group of people is overlooked when it comes to health.
As we adapt to having an ageing population, the role of carers will become even more important, so there is an overwhelming economic, social and moral case for continuing to improve the services that are offered to them. The Carers (Scotland) Bill will for the first time enshrine in law the rights of carers. It proposes a range of measures to improve and expand support for carers. Therefore, it is important to hear some of the key facts and stories about our carers in Scotland.
There are an estimated 745,000 adult carers and about 44,000 young carers in Scotland. The value of the care that they provide is estimated to be around £10.3 billion each year. However, it tends to be overlooked that caring can have a detrimental impact on the health and wellbeing of a carer, which can consequently affect the quality of care that the person who is being cared for receives. Caring can intensify pre-existing health problems in carers or even lead to new ones. It is estimated that around 32 per cent of carers have indicated that caring has a negative impact on their health. Research has shown that the most common health effects are psychological.
It is not morally acceptable to allow someone who provides care to another human being to suffer on their own. That is why the Government has placed the issue at the forefront of the First Minister’s programme for government and has invested about £114 million—more than ever—in programmes to support carers. It is also why we need to address the issue here and now.
Recently, I heard a story about a man named Ronnie, who has cared for his wife for the past 15 years. She needs 24-hour care, so he gave up his job 12 years ago to look after her full time. When he was asked what we could do to help him, he replied:
“There’s not enough recognition of what a carer does.”
Where have we heard that before? When he filled in forms, there was no category “full-time carer”. He said that
“no-one understands what that is.”
Stories like Ronnie’s are why the Scottish Government should place, and will place, the needs of carers at the heart of the devolved carers allowance. Carers sacrifice much for the betterment of others and now they are suffering. We cannot sit on the sidelines and let them suffer any longer. The bill that we are debating aims to improve support, and to provide greater support, to carers.
At present, the law considers a carer to be someone
“who provides, or intends to provide, a substantial amount of care on a regular basis to a person aged 18 or over”
and for whom the local authority provides community care services. The bill will broaden the definition of carer to encompass more people who go unrecognised as carers, so that they get the recognition that they deserve. To accomplish that goal, it will remove the requirement for care to be substantial and regular.
The bill will place on local authorities a duty to prepare a support plan for anyone who identifies themselves as a carer or any carer who requests one. Such support is something that many carers drastically need, and it is our job to ensure that they receive it.
Young carers are a shining beacon among the incredible young people we have here in Scotland. Young carers are those who are under the age of 18 or who are 18 and are still at school. It is the Government’s responsibility to make sure that they are looked after. It is my firm belief that we must do everything in our power to protect the wellbeing of young carers.
Under the current legislation, if the young carer’s needs can be addressed through the normal course of things—for example, by their parents or by mainstream services—there is no need for a support plan. That is unacceptable, and I am pleased to say that the bill addresses that issue. Under one of its proposals, the bill will give a responsible authority a duty to prepare a young carer statement for anyone it believes to be a young carer and for any young carer who requests one. That will improve access to support for young carers and it will, it is hoped, prevent the escalation of caring needs.
As I near the end of my reflections on carers in Scotland, I want to highlight one more story from the Carers Trust that I read. I also recommend that all my colleagues—if they have not already done so—take the time to read and learn about more of the touching stories about carers throughout the UK. This story is about a 14-year-old girl who is caring for her eight-year-old brother, who suffers from a very rare genetic condition. The girl lives with her mum and her brother, so it can be hard for her mum to get all the jobs done around the house. The girl can no longer live a normal childhood. It was not her choice to live this life, but it is the life that she lives. She talks about how, when she talks to people such as doctors and social workers, some of them do not listen to her because of her age. I am here today, along with members across the chamber, to say to that young girl, “The Scottish Parliament is here and we are listening to you.”
I want to conclude by again highlighting some of the bill’s key points. It will enshrine carers’ rights in law for the first time in Scotland and it will ensure that carers will be protected from being charged for the support that they receive. The Scottish Government will seek to amend the bill to enshrine emergency planning in the care plan process. I am sure that the Government is committed to ensuring that we look after our carers. All the comments that other members have made aside, let us appreciate carers’ tireless efforts. In every aspect, carers are true heroes, and I commend all of them for all the work that they do each and every day.
We come to the closing speeches.
16:33
It has been a very interesting and well-informed debate, in which all the pertinent questions have been asked in some very well-targeted and passionate speeches. There have been quite a lot of calls for change. Often in the Parliament, that presages a partisan debate, but I do not get any sense of that at all. It seems to me that the minister recognises that the bill is an important one that is a work in progress, and I hope that he will be open to considering and incorporating—in addition to the amendments that he has already identified will be made—some of those the cases for which have been made powerfully in the debate.
It is interesting that the debate is taking place on the same day that the British Medical Association has published its manifesto for Scotland. Right at the start of that, the BMA talks about the population challenge. I think that that underpinned one of the key points that Jackie Baillie made, which was to do with the question of what we are setting in train now and whether we will have the resource to fund it as the population continues to change.
All of us who debate health matters regularly know that it is clear that the profile of the population of Scotland has changed dramatically. It is clear that, 100 years ago, Scotland was a young country. It is hard to imagine that older people were the exception, not the rule. However, we now see an enormous increase in the number of elderly people. As Jim Hume said, we can celebrate that, but nonetheless that brings with it challenges for the future. As we look forward, there will be an even greater concentration of elderly people.
We have talked before about how we have moved from the experience of the provision of care in a family being an exception to its being something that nearly all of us now have first-hand experience of. That will become more common, not less so.
Johann Lamont said:
“a right that is unenforceable is unacceptable”.
That was very powerful. We have embarked on huge and important social legislation in the chamber before, whether for free transport for the elderly or free personal care for the elderly, which we are funding, but at a rate that is far greater than anybody envisaged when we began. When we commence the important changes for carers, it is therefore important that we know that we are putting in place a mechanism by which they can be properly and effectively realised not only now, but as we go forward.
In identifying the various amendments, the minister gave quite a technical speech. However, Duncan McNeil brought the debate very much back to the very personal role of carers; in fact, Richard Lyle ended the debate in exactly the same way. Duncan McNeil made points about the end-of-life carer assessment, the priority that may need to be attached to that—albeit that I accept Richard Simpson’s more general point, as well—and the emergency planning arrangements. He welcomed additional services not being required unless they are absolutely needed, and he brought focus on discharge and admissions, which Richard Simpson gave a stark example of in his contribution. Those remain areas in which considerable work is still to be done.
I very much appreciated Rhoda Grant’s contribution, particularly on post-carer support. The reality is that, although we say that we want to ensure that the opportunities of young carers are not in any way compromised by the role that they take on as carers, which they feel that they have to take on—I have an experience of that in my own family—those opportunities are compromised. We simply cannot have a young person going into further education and suddenly being brought into a domestic situation to provide concentrated care for a relative without that having an impact on their potential opportunities when they become post-carer individuals. It is very important that we try to find a way of building into our thinking how we will give post-carer support to individuals in order that they are able to resume their lives and make full use of and exploit all the potential opportunities that they have, which may have been set to one side at the time. It is not good enough just to say that. The reality is that that is happening, and we have to address that.
Graeme Dey was interesting when he gave the example of GP practices identifying potential carers. My colleague Margaret Mitchell wanted me to highlight the practice in a Motherwell general practice, which now has automatic flagging of carers so that, if a carer presents, any GP is stimulated to check how their health is.
I have already mentioned Johann Lamont’s thoughtful speech, which included some very well-focused questions. She raised an important point about the bureaucracy that underpins the opportunities for people to get minor respite and the desire that there should be to offer that much more readily.
Linda Fabiani introduced the issue of early-onset dementia. That was something of a digression, but it was important nonetheless. The Public Petitions Committee has been dealing with that issue over a considerable period of time. More recently, the Cabinet Secretary for Health, Wellbeing and Sport said that she was looking at proposals that she hopes to bring before Parliament in the new year. We look forward to hearing those proposals.
My goodness—Jackie Baillie has certainly carried a load for the Labour Party this week. She was the voice of reason on Tuesday and a partisan turn in a good old tribal way yesterday. Today, she used her forensic skills on a whole series of issues that relate to finance. I hope that the minister will respond to those points. Mr Coffey said that he was very confident that he would do so. Like me, he must have seen the blizzard of communications that came from the officials down to Mr Hepburn following Ms Baillie’s speech. I am therefore very confident that those financial questions will be answered.
We have a bill for which there is a tremendous amount of good will across the chamber. Concerns have been expressed that must be addressed, and I am confident that they probably will be. As the bill leaves Parliament and becomes a legal entitlement, it is important that its financial underpinning is robust and that it looks to the future as well as to today. Otherwise, we will be looked upon as people who had rather rose-tinted spectacles regarding how such things would operate, and who did not put in place the provision to ensure that they would be effective.
16:40
Caring is something that we all do. Even as cold, stone-hearted politicians, we have some care within us—at least I hope so when I look around the chamber. We do that whether it is for our children, our friends, our grandparents, our neighbours or our mums and dads. We all show that love and affection and perform our duty, hopefully as members of a civilised society, through our friendship, compassion and care for those who need our help. We see that in our communities and around us every day and every week.
That care can be expressed in many different ways. It might be a simple thing, such as someone occasionally dropping in to check that their neighbour is okay, driving a parent to a day centre or pensioners group, providing a daily meal or taking a friend to hospital or a doctor’s appointment. Those are acts of care that we all do and see regularly.
However, for many people—many of our family, friends and neighbours—caring is a commitment that requires much more than that. It requires a dedication that is often full time. Duncan McNeil eloquently described the consequences of such a level of commitment for those people who perform that role. Several members have mentioned the number of carers involved, which is quite an astronomical figure. Almost 800,000 Scots provide that caring role.
I was very pleased that Johann Lamont mentioned young carers. The example that I mentioned earlier about the young girl in my class at school will live with me for some time. That young girl clearly lacked confidence, she was pretty anonymous in the class and she sank into the background, not saying very much. No wonder she never said very much—what she was doing at home was taking up all her efforts and energy. The fact that I, as her teacher, did not know that, was shameful. That revealed a breakdown in the system, which should have alerted me or any other teacher who went into the class, whether for one day or for the rest of the year.
Those carers do not need or, I believe, want our sympathy or our warm words. They need and want our support, in both deed and budget. As many members have said, it is estimated that there is a huge financial value—up to £10 billion, which is a remarkable figure—in the amount of care that is provided. We need to invest to ensure that people get a fair deal for that, and that they get the support that they and the people they care for deserve.
All that comes at a cost to the carers themselves. As Jim Hume mentioned, there are effects on people’s psychological wellbeing, with problems of mental ill-health, anxiety and a lack of confidence and self-esteem. Carers are also more likely to be in debt, to have to leave their job or to require reduced hours, all because of the pressures of having to juggle a job and caring responsibilities. All that adds a huge strain to their emotional wellbeing and their personal relationships. For those and many other reasons, carers require our help and support and the help and support of the communities that they live in.
Given the vital role that carers play in our communities, any bill to help carers would be welcomed. However, some serious questions have been asked today about the substance of the bill, and about how it will help and improve the daily realities that are faced by carers. Those questions must be answered.
As Richard Simpson said, there is a real concern about the lack of regulations that accompany the bill. Jackie Baillie mentioned many of the points that the minister and his team will have to answer.
Of course, everyone will support the proposal for carer plans; it is hardly controversial. Ensuring that there is a support plan that identifies the needs of carers is a good thing. On the passage of the bill, we would like that provision to be implemented without delay. However, the adult carer support plan and the young carer statement will be worth more than the paper that they are written on only if they are followed through, with support being put in place and fully financed so that the plans become a reality. We can write up as many plans as we like and stick them in a cupboard, but if they do not mean anything for the people who need our assistance it will hardly have been worth the effort.
Issues around the eligibility criteria—at national or local level—will be debated during the bill process. Some people suggest national criteria; others suggest local criteria. Whichever they are, the criteria must be effective and allow flexibility to meet local needs while ensuring that people can get equal access.
Neil Findlay makes a very thoughtful point regarding national and local eligibility criteria, although there has been confusion about what different people in the carer sector mean by that. He mentioned equal access. Was he talking about equal access as a trigger for when carer support needs must be met by a local authority, or did he mean equality in provision? Obviously, those are two very different things. Equality of provision does not necessarily allow that local discretion.
I think that the people on the ground want to ensure that they have equal access to what they actually receive. Ultimately, that is what they want; they want to receive an improved service. We can debate whether that would be better done nationally or locally, but what ends up happening in those people’s lives is most important.
Plans that incorporate education and training are a good thing. I am very positive about the role of advocacy and counselling, and income maximisation is a huge issue. Those are all very relevant to the lives of people who are carers. Much of that support should be being provided already but cannot be because such things cost money. We cannot provide such services on fresh air and crossed fingers on a steeply declining budget in local government.
The main concerns are about the financial provisions in the bill, as Rhoda Grant, Johann Lamont, Jackie Baillie and other members said. The bill will place additional duties and responsibilities on councils. Assessments alone will cost money and will need to be fully funded, but the consequences of assessment will place additional funding pressures on councils that are already at breaking point. Councils are not just down to the bone but well through the marrow and almost out the other side. The social care system, social work departments and support workers are drowning under intense pressure, while budget cuts year on year threaten the services that civilise us as a society.
Jackson Carlaw talked about good practice in Motherwell. Good practice is going on and is welcome but at times that is happening despite the system, not because of it. My local authority, West Lothian Council, has had £89 million taken from it in the past six or seven years. Its budget is only £400 million but it has lost £89 million.
If there is not full funding for what the bill proposes and funding to replace what we have already lost, how can we provide the support services that carers, people who are cared for and their families need? Councils across Scotland are staring at more job losses and more service cuts. The Scottish Government has to get real about the crisis in local government finance; it has to stop pretending that that crisis will somehow go away and that we can give councils more responsibility while giving them less money.
A vital area that members mentioned is breaks. The debate on the issue will continue as the bill progresses through Parliament.
Members mentioned their local carers organisations, and I put on record my support for Carers of West Lothian, which has just moved into new premises. The organisation has helped thousands of carers across the county.
We will of course support the bill, but as it goes through the parliamentary process it must be strengthened and the financial issues must be resolved. As Johann Lamont said, a right is not a right if it is not enforceable. I whole-heartedly agree with her.
16:50
I thank all members for their contributions. This has been a very thoughtful debate. I agree with Jackson Carlaw that the debate has been very good, although I will try to be a little less technical in my summation than I was in my opening remarks. In the 10 minutes or so that is available to me, I am unlikely to be able to respond to every point that has been made, so I apologise for that in advance, but I will try to respond to as many points as I can.
The Government’s vision is for a flourishing, optimistic and innovative Scotland, and tackling inequalities and promoting equality of opportunity remain our major challenge. We want a Scotland where people have control over their lives and are empowered to make choices. Scotland’s carers have to be involved in that. I am sure that that is a common aspiration for us all.
In his thoughtful opening remarks, Duncan McNeil made the point that caring can be life affirming, but it can also have a negative impact on some carers. Whatever the circumstances, carers should enjoy the same opportunities in life as people who do not have caring responsibilities and they should be able to achieve their full potential as citizens. Linda Fabiani gave the example of people who are carers and who might need to be supported to stay in employment. The Carers (Scotland) Bill should work to support carers and better enable them to maintain a life alongside caring.
Rhoda Grant spoke of individual carers having differing needs. I agree with that, and it is why our approach has to be person centred. Rhoda Grant also made the fundamentally important point that carers must have the choice to care, and I also agree with that. That is why, as well as identifying a carer’s personal outcomes and needs, information about the extent to which the carer is willing and able to provide care should be in any adult carer support plan and young carer statement.
We have introduced the bill because we want to accelerate the pace of change and build on what has already been achieved. As I said in my opening speech, the bill introduces a number of provisions that are aimed at achieving the vision of supporting carers having a life alongside caring by extending their rights in law.
On the point about carers being entitled to a life outwith their carer role, and my point about people falling out of work because of lack of flexibility, what discussions has the minister had with the Cabinet Secretary for Fair Work, Skills and Training about the role of the fair work convention and whether any input on the needs of carers is being recognised in any discussion about what work should look like and how people can be supported?
I have no doubt that the fair work convention will consider the role of carers, but I am happy to explore that further with ministerial colleagues. The point that I am making here is that each carer is an individual human being and the assessment should be focused on their individual circumstances. If support to maintain employment is an assessed need, it should be contained in the assessment.
I welcome the universal support for the bill that has been expressed today. A number of members have suggested that we need to change the bill to improve it. During my time in the Parliament, I cannot remember a single bill that has stayed the same as it was when it was introduced. I have already committed to some changes and I hope that I have demonstrated my willingness to continue to consider and accommodate further changes. Jackson Carlaw picked up my demeanour correctly; I am open to listening to any amendments that might be suggested and if I agree with them and think that they will be effective, I will support them.
Sandra White picked up on carer involvement in local carer strategies. Carer involvement runs throughout the bill and it contains a specific duty to take steps to involve carers when preparing and reviewing any local carer strategy. The provision is also contained in regulations under the Public Bodies (Joint Working) (Scotland) Act 2014. The point is fundamental.
Some members talked about their concern about the impact of an increase in demand that is associated with the widening of the definition of a carer. Johann Lamont and Nanette Milne picked up on that. However, the increase in demand will be accompanied by a more streamlined assessment process to develop the adult carer support plan and young carer statement, and additional resources for local authorities will accompany the bill.
Rhoda Grant asked whether there could be a role for the third sector carers centres in particular to be involved in the assessment process. There is nothing in the bill to prevent that approach; indeed, we want to see innovation in this area.
Duncan McNeil and others raised issues to do with local eligibility criteria. I reassert that we will ensure that local eligibility criteria are informed by regulations—there will be national matters that steer local criteria—and I will work with carers organisations to inform those regulations. Duncan McNeil said that if we continue with the approach that we have set out in the bill, an assessment of the efficacy of that approach will be important. Neil Findlay made the important point that the key issue is that the approach has to be effective. As I set out in my response to the Health and Sport Committee’s stage 1 report, the arrangements for monitoring and assessing the implementation of the bill, including support provided to carers under local eligibility criteria, will be agreed with COSLA, individual local authorities, the national carers organisations and other key interests.
Linda Fabiani and Richard Simpson raised the issue of emergency planning and future planning. I agree that that is very important to carers, which is why I will lodge an amendment at stage 2 to provide that information about emergency planning must be contained in the adult carer support plan or the young carer statement. I recognise the particular importance of future planning to older carers. Sandra White spoke about older carers’ needs in her contribution. I intend to lodge an amendment to provide that the information and advice service must provide information about future planning as well as emergency planning. I will consider carefully how that information is shared with general practitioners, which Richard Simpson mentioned.
Johann Lamont raised issues to do with kinship carers. The bill will apply to kinship carers. Bob Doris made a point about the funding that has been agreed with COSLA and is in place to support parity between kinship carer and foster carer allowances.
Duncan McNeil, Sandra White and Rhoda Grant raised issues to do with short breaks. I assure Duncan McNeil that the process for consultation on and scrutiny of the regulations that we put in place will be as important to me as it is to him. I want us to get that right. Rhoda Grant asked what can constitute a short break. We need to be flexible, because short breaks can constitute a great many things; they can mean different things to different people. I agree with the point that the Health and Sport Committee made in its stage 1 report that guidance regarding the provision of short breaks should make clear
“the importance of ensuring short breaks are tailored to the needs of the carer.”
Graeme Dey and Nanette Milne raised the issue of the transition from the caring role when it ends, which I know is an issue of importance to Marie Curie. I recognise that it can be difficult—even devastating—for an individual when their caring role comes to an end. The bill deliberately focuses on providing access to an adult carer support plan or a young carer statement in order to sustain the caring role, but I am of course aware that some local carers centres continue to support carers after their caring role ends. Graeme Dey and Johann Lamont spoke about good work in their areas in that regard. I would be very happy to explore how good practice on this issue can be shared in guidance.
Graeme Dey, Jim Hume and Nanette Milne raised the issue of timescales and asked why there is no national limit on the time taken to prepare an adult carer support plan or young carer statement. I agree that it is important for carers to have an indication of how long it might take to prepare an adult carer support plan or a young carer statement, which is why I have made provision requiring each local authority to set out the intended timescales for preparing such plans or statements as part of their local carer strategy. I hear the calls for us to look at that further and I am very happy to consider any proposal that is brought forward at a subsequent stage.
I am conscious that time is running out and that there were substantial financial questions that carers organisations wanted answered.
I hope that I have addressed some of those substantive issues. I am also conscious of time and I will try to get on with this as quickly as I can.
We have moved in relation to the timescales for preparing plans for those caring for the terminally ill. We set out that matter in our response to the stage 1 report. I will not have time to respond to the issues about the named person and discharge, but I am happy to respond further at another time.
On the financial issues, which Jackie Baillie was driving at, let me be clear that the estimates presented in the financial memorandum to the bill were informed by comprehensive information provided by local authorities to date. Taking into account the work of the finance group, I have established that there is no evidence to suggest that the financial memorandum represents anything other than a robust assessment of the likely costs of the bill’s provisions. By 2021-22, we will be providing £88 million, including £63 million for direct support to carers. That is a substantial commitment to carers across Scotland, as is the bill, which I commend to Parliament.
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