Chamber and committees

I am delighted to have the opportunity to open this members’ business debate to mark carers rights day 2022. I thank colleagues on all sides of the chamber for joining me to contribute to the debate, and I thank all those who supported the motion, which has allowed it to take place.

Carers rights day is an important marker on the calendar that provides an opportunity to spread awareness of the fundamental rights that apply to all carers. Some of those rights include the right to request flexible working options from an employer, the right to be identified and recognised as a carer, the right to request certain immunisations, such as a flu jab, and the right to be consulted on things such as hospital discharge. Fundamentally, however, it is about acknowledging the rights that carers have to be supported and respected. It is about the dignity and value that people have in our society, and acknowledging that people are human beings who are giving all that they can to care for a loved one.

As we begin the debate, it is important to recognise that we cannot simply reduce carers rights to one day, or one debate in the chamber, per year. The lived experience of carers should, and must, be mainstreamed in all our policy discussions and proposals, across everything that we do.

Before I came to the chamber this evening, I was tweeted by Lynn Williams, a carer whom I know well. She said that enough is enough—carers have to be at the table where decisions are made, and they have to be involved in “carer proofing” our legislation and our budgets. As we often hear in debates on human rights, our aim should be to do “nothing about us without us”, and that is as true for carers as it is for other groups.

This year, carers rights day was marked on 24 November, and the theme focused on the cost of caring. That can be the cost on an unpaid carer’s wellbeing or the financial costs that are associated with looking after someone, or it can refer to how caring for someone can cost carers in the quality of their relationships and the activities that they often have to sacrifice. Of course, the cost of caring is particularly pertinent this year, given that we find ourselves in the midst of an unparalleled cost of living crisis. In Scotland, there are an estimated 800,000 adults who provide care for someone who is seriously ill, someone who lives with a disability or someone who needs additional support in later years. Carers Scotland has estimated that it would cost £10.9 billion every year to replace the cumulative labour of unpaid carers.

We meet tonight not only in the context of the current cost of living emergency, but in the context of Covid. Unpaid carers were crucial in the response to the pandemic, and they shouldered enormous burdens to keep their loved ones safe. For many carers, Covid has not gone away, and they continue to feel real fear and anxiety as they try to care for their loved ones. They are crying out for continued support in the form of antivirals and other types of support.

As our society began its recovery from Covid, we all dreamed of creating a new and better future. The rhetoric was to build back better: there was a vision of a fundamentally better society that seemed tangible, and politicians of all stripes promised a new deal for carers. However, if we are honest, we can say that the action has not yet matched the rhetoric, and we are still very much on a journey towards changing things for the better.

In the past year, I have, along with colleagues, had round-table sessions with unpaid carers, and I have listened to them as they have shared with me the everyday challenges that they are facing right now. Tragically, in Scotland, unpaid carers are facing a choice between turning on their heating or feeding themselves. That is not just a glib phrase—it is the reality that is faced by tens of thousands of unpaid carers.

New research from Carers Scotland, which was released in its “State of Caring 2022—A picture of unpaid caring in Scotland” report, has revealed that 40 per cent of carers on carers allowance have cut back on food and heat in order to make ends meet. I implore colleagues on all sides of the chamber to read the report if they have not yet done so, as it makes for important and sobering reading.

It is important to remember that the burden of the cost of living crisis is not shared evenly. Unpaid carers have been disproportionately impacted by the crisis, as people with caring responsibilities typically have higher energy costs. Carers may need to operate essential life-sustaining equipment such as hoists, oxygen and wheelchairs, which all require the use of a great deal of energy.

In addition, unpaid carers must commonly keep their houses warmer than average to ensure that the person for whom they care is comfortable and well. We have seen some stark stories recently, in the press and elsewhere, about individual circumstances. Members will be familiar with the case of Carolynne Hunter, which was reported at the weekend. She is facing energy bills in excess of £17,000 per year to care for her 12-year-old daughter, Freya. As members may have seen, the actor Kate Winslet has contributed money to help Carolynne pay those exorbitant fuel bills. However, we have to be honest in recognising that, although that is a generous gesture, carers should not have to rely on philanthropy or charity in order to be able to pay their bills. There must be meaningful support from Government for carers who are faced with such extortionate bills because they have to run vital life-sustaining equipment.

We know that there are ways to do that. In England, a warm home prescription is currently being piloted, in which people’s bills are paid for by the national health service. That is a preventative measure that can keep people out of hospital and prevent people with disabilities and complex health problems from becoming seriously ill. I hope that the Scottish Government is exploring the various potential policy options in that space, and I am sure that the Minister for Mental Wellbeing and Social Care will want to say something on that in his contribution. It is important that we try to think outside the box and work together to find the ways in which we can support people in this very precarious time.

I pay tribute to the incredible work of unpaid carers across my region of West Scotland, many of whom I have had the privilege to meet and support since I was first elected to Parliament. I put on record my support and thanks for the work of not only carers representative organisations such as Carers Scotland and Carers UK, which commissioned the “State of Caring 2022” report, but the local carer centres in our own areas, which I am sure that we all know well, and which do a huge amount of work to protect and support the rights of carers. I thank carer centres in East Dunbartonshire, East Renfrewshire, Renfrewshire, North Ayrshire and Inverclyde, because they are a vital lifeline for unpaid carers, providing advice and guidance, advocacy services and emotional support.

Let us all, in this place, rededicate ourselves to listening to carers and respecting their rights, and—crucially—let us act together to make the changes that they so need.

We are probably talking about people who would be seen as gatekeepers in the process—those in social work departments, among others, who function as commissioners. Does logic suggest that it would be better for that role to sit with a national body than for it to sit locally?

Sure. We were talking about the complaints system, and I had noticed that Community Integrated Care said in its submission that responding to a complaint as close as possible to where the issue has occurred, at the local level, is important—I am paraphrasing, obviously. Does Karen Sheridan have a comment on the importance of locality in the complaints procedure?

It is important to pull some of those threads together. Is there an opportunity in the National Care Service (Scotland) Bill to do that? Obviously, it is a Government bill, and we would not want to lose sight of some of those elements that are broadly supported by the learning disability sector and others.

That follows on from Frank McKillop’s point about social work. There is a debate—we have heard evidence on both sides of the argument—about whether social work and children’s services should be in or out of the scope of the NCS. Is it important that the social work profession stays together, whatever the end point is, because of what has been said about transitions?

Good afternoon. We have had useful opening comments on the general principles of the bill, but I want to ask about what is actually in the bill. It provides for the transfer of accountability from local authorities to the Scottish ministers. What is your view on that concept and on the risks and benefits therein? I ask Mhairi Wylie to start.

No, convener, I will let Evelyn come in.

There is a commonality about co-design being part of the process. Andy, what is your vision for the involvement of people with disabilities, and particularly learning disabilities, in co-design? How do we ensure that they are involved?

Co-design is at the heart of the bill’s approach, and the Government is keen to co-design once the framework legislation has been passed. Should there have been more co-design in advance of the bill going through the legislative process? Also, to go back to the question that we started with, what co-design processes are missing? People have advocated that such processes should be on the face of the bill.

From a Highland perspective, was there any sense from the people whom you consulted in your membership that things already feel further away from communities? Was there a sense that we need to bring things closer to communities? To tie that to the proposal for care boards, do people want care boards that are more local rather than just a board that is in Inverness or wherever?