Meeting of the Parliament (Hybrid)

Meeting date: Tuesday, December 1, 2020

Official Report 1048KB pdf

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Carers (Support After Bereavement)

The final item of business is a members’ business debate on motion S5M-22523, in the name of Mark Griffin, on the report, “Life After Death: supporting carers after bereavement”. The debate will be concluded without any question being put.

Motion debated,

That the Parliament welcomes the Marie Curie, Reform Scotland and Sue Ryder report, Life After Death: supporting carers after bereavement; notes that it calls for more recognition of the impact of death on the carer and the effect on the carer’s physical and mental health, their relationships, ability to work and finances; understands that over 15,000 people have died of all conditions during the COVID-19 epidemic in Scotland, leaving behind a significant number of bereaved people; notes the report’s key recommendations for future policy and legislation, including a new Carers (Bereavement Support) (Scotland) Bill early in the next parliamentary session to provide information and a plan to support carers following the end of their caring role, a new fund to support training and education for carers returning to work/seeking employment, a new post-caring support payment to help carers experiencing financial problems following the end of their caring role, and to extend eligibility for the Carer’s Allowance and Carer’s Allowance Supplement for up to six months after the person’s caring role comes to an end from the current eight weeks; recognises that 78,870 people were claiming Carer’s Allowance before the pandemic struck, including 12,044 in Central Scotland; notes the calls for the Scottish Government to consider these recommendations, and thanks Scotland’s carers for all that they do to support terminally ill people and those at end of life.

18:27  

I thank the members who supported the motion and who join me, in the chamber or remotely, this evening. I hope that they will also join me in offering thanks to Scotland’s unpaid carers for the work that they do in supporting loved ones day in, day out. The debate will deal with the upheaval of what comes after providing care; I hope that we can show carers our willingness to agree to support them better, now and in the years ahead.

I am grateful to Marie Curie, Sue Ryder and Reform Scotland for asking me to bring to the chamber their report, “Life After Death: supporting carers after bereavement”. The report presents a firm platform for supporting bereaved carers into the next decade, with concise and logical policy solutions that can help bereaved carers in a meaningful way. I hope that the Government, and every other party, will consider those suggested solutions ahead of the budget and the upcoming election.

The report provides a stark reminder of how tough our unpaid carers have it. Virtually every aspect of life is impacted: loneliness, health concerns, sleepless nights and financial worries are all regular issues for carers. For an estimated 40,000 to 50,000 carers every year, the period of support that they give their family and friends ends with loss. Their grief is further compounded by worries about the future and finances, and by even greater loneliness.

The past year has been torturous for our unpaid carers. They have had to worry about catching Covid-19 and spreading it to their loved ones, and they have faced increased costs amid unemployment or furlough. Some of them nursed the 4,000 people who spent their final moments at home. Those deaths have resulted not only from Covid-19—this year, 1,500 people have died from cancer, and 1,000 from heart disease, at home. Although many people would prefer to die at home, we do not know whether those people had the quality of care that they would expect in hospital, nor do we know how they and their carers coped in those final moments.

Some of us might feel rudderless right now, but I cannot imagine how carers are coping in a distanced society, especially when they face loss. It is estimated that the number of bereaved carers will increase by 10 per cent this year because the vast majority of Covid-19 deaths were of people who were aged over 75 or who had an underlying health condition. At the same time, more people are now caring for older, disabled or seriously ill relatives or friends since the Covid-19 pandemic. Carers Scotland believes that the number has shot up by 400,000. I ask the Government what research it has commissioned to see how people have coped and what can be learned from carers’ experiences over the past year.

Our unpaid carers have borne the brunt of loss during the pandemic—there is no getting away from that—so today’s debate could not have come soon enough. The proposals from Marie Curie, Sue Ryder and Reform Scotland are sensible and would give carers continued assurance that the support that we offer them has not stopped at the carers allowance supplement or the implementation of the Carers (Scotland) Act 2016.

The proposal for a carers bereavement support bill, to reflect in law the principles behind the bereavement charter for Scotland, has to be the starting point for all parties in the next session of Parliament. Securing a right to a post-carer support plan is also important. That could build on the familiar person-centred support plans and young carer statement model by organising the right bereavement support for carers, in addition to providing advice on benefits and employability services.

The longer someone has been caring, the longer they are likely to have been out of the labour market and, as the organisations that I mentioned put it,

“potentially isolated from the networks they had before becoming a carer”.

We know that most unpaid carers are women, and it is clear that the impact of no longer providing care and trying to get back into work is acutely gendered. How do those carers re-enter the labour market after having given up work for such a long period of time? What happens to their own income when their entitlement to carers allowance ends eight weeks after their loss?

Even in normal times, former carers might struggle to simultaneously grieve and recover, but we are not living in normal times. The pandemic continues and unemployment is set to rise month on month; it is plain to see that the jobs market will be very competitive. As the report says, we need to recognise that it will take people more time to rebuild those connections and adjust.

An extension of the entitlement to carers allowance to six months after death, and a new post-caring support payment, would provide stability after a loss and could serve as a recognition of the commitment that unpaid carers have given to their loved ones. Those are realistic and tangible solutions that could give meaningful support to bereaved carers, and they are within reach. The organisations—Marie Curie, Sue Ryder and Reform Scotland—have provided initial costings for those proposals, and I ask the Government to work collaboratively with them in that regard.

When I lodged my motion, the second wave of Covid was still to emerge. Since then, hundreds more carers are likely to have experienced the same fear and devastating loss at the hands of the virus. We cannot, in all good conscience, expect them to return to work and to normality in a world that is clearly not going to be normal for some time. I hope that we can agree that we must do more to support carers, now and in the years ahead, when they experience that loss.

18:34  

I thank Mark Griffin for securing this debate and commend him for his thoughtful and eloquent speech. I also thank Sue Ryder, Marie Curie and Reform Scotland for producing their policy proposals paper, “Life After Death: supporting carers after bereavement”. Most important, I thank unpaid carers across my constituency, Renfrewshire South, for all the support that they provide.

In recent years, we have made progress in making Scotland a place that takes a more person-centred and flexible approach to unpaid carers and the people whom carers support. Landmarks in that regard include the introduction of self-directed support, the integration of health and social care, the Carers (Scotland) Act 2016 and the devolution of the carers allowance, which was followed by the introduction of the carers allowance supplement. In addition, the Carer Positive scheme, which I have been proud to support in the Scottish Parliament and in Renfrewshire South, has led to a growing number of employers being accredited for putting in place workplace policies that support working carers.

The report that we are considering in the debate makes an important contribution, in that it focuses on what happens to carers after bereavement, when there is no longer a person to care for. It identifies a number of issues, including the loss of financial support, transition and employment support.

A central recommendation of the report is the introduction of a carers bereavement support bill early in the new parliamentary session, to put a new post-carer support plan on a statutory footing, commensurate with that of the adult carer support plan and the young carer statement, which were provided for in the 2016 act. According to the report’s authors, the proposed new plan

“would be an opportunity to identify information and services to support someone following the end of their caring role. This could include bereavement support, information and advice on financial support/benefits available, as well as identifying any services locally or online to support a return to work. For those not looking for work, it is just as important that they are helped to rebuild connections and not left feeling isolated.”

Although many groups and organisations, such as carers centres, provide various strands of support, a post-carer support plan could provide additional support to help a person to navigate the options in a period of potential distress and trauma.

The aims of the proposed plan are laudable and I imagine that they command universal support in the Parliament. The idea is worth exploring, and there is an opportunity to do that through post-legislative scrutiny of the Carers (Scotland) Act 2016 by the successor committee to either the Health and Sport Committee or the Public Audit and Post-legislative Scrutiny Committee, early in the next session.

It is worth noting that the 2016 act contains provision for the information in the adult carer support plan and the young carer statement, as well as the form that those documents take, to be amended or supplemented via statutory instrument. That might allow the Scottish ministers to incorporate a post-carer support plan into the existing legislative architecture, thereby obviating the need for primary legislation.

The report contains many other worthy proposals, including on devolved and reserved social security and employment support. I encourage members to read it, if they have not yet had the opportunity to do so.

I again thank Mark Griffin for securing the debate and Sue Ryder, Marie Curie and Reform Scotland for producing the report. I know that the Scottish Government will carefully consider all proposals to enhance support for carers and I look forward to hearing the cabinet secretary’s response to the debate.

18:38  

I thank Mark Griffin for securing the debate, and I thank all the organisations that sent us briefings.

Support for carers after bereavement is probably an issue that not enough of us have considered. I am sure that many members have spent time in the company of carers, to learn about their experience and consider what we might do to address the issues that they face in their caring roles. We have thought about carers’ financial position, and the Parliament increased the carers allowance. We might have thought about the isolation that a caring role can bring and about the situation of the many young carers who have to fit a caring role into their childhood.

However, I have to be honest and say that I had never considered what happens next if the caring role ends because of a bereavement. As Mark Griffin said, a report by Carers UK Scotland noted that nearly 400,000 more people in Scotland have found themselves caring for an older, disabled or seriously ill relative or friend during the Covid pandemic, so it seems obvious that the situation must occur all too often. Many are financially supported in that caring role, so what happens when that role and the vital support end?

First, there is the bereavement itself and the mental stress of losing a loved one that the carer has been instrumental in caring for. In many cases, that has been the carer’s main purpose in life, so bereavement must have a significant impact on their physical and mental health.

The carers allowance continues for only eight weeks after the death of the cared-for person, which is not long enough to allow the carer to grieve, regroup and find a job. It is hard enough to lose a loved one, and trying to rebuild interaction with the community must be more difficult in the current circumstances.

Today, we are considering the development of a support package that is designed for carers who are going through that difficult process—that is the crux of Mark Griffin’s motion. A carers bereavement support bill should be introduced early in the next parliamentary session, with provisions to support carers back into work, including the offer of training and education. The idea of a post-caring support payment that is linked to the length of time that the person has been a carer and out of the job market is eminently sensible and would help with the financial stresses that come at the end of a caring role. There is also a proposal to extend carers allowance to six months after the caring role ends—currently, the period is eight weeks.

Those ideas are not big asks, particularly when we consider the role that carers play in society and the sacrifices that they make—not to mention the financial worth of their role in our communities.

Now and again in the chamber, we discuss situations that are hard to imagine and difficult to deal with, and this is one of those. I again congratulate Mark Griffin on giving us the opportunity to discuss how we support a part of our community that, all too often, is forgotten. Perhaps the debate can begin the process of delivering long-overdue solutions.

18:41  

I congratulate Mark Griffin on securing this important debate. I also congratulate him on highlighting the role of unpaid carers, the difficult issue of what happens to them when they suffer bereavement and the impact on them when the person they have cared for is no longer part of their life.

The role of Scotland’s unpaid carers has grown in recent years. Analysis for an earlier debate today showed that the number of unpaid carers has gone up by almost 400,000 to 1.1 million, which is a significant figure. Carers often give up work or retire early. They devote much of their time to caring for a partner or loved one. The role becomes all-consuming—it takes over their life. If the carer loses the person they have been caring for, not only is there is a massive hole in their life, together with mental and emotional pain, but it is difficult for them to get back into and participate in society and find the physical and financial support that they require.

The report highlights those issues and outlines a way forward to support carers in the aftermath of a bereavement. It lays out a number of asks. The first is the introduction of a carers bereavement support bill, which would enshrine the rights of carers, post-bereavement, and make it clear what support they were entitled to. Many carers are young, such as those who look after a parent, and they may have difficulties getting back into the workplace. A second ask is for a training and education fund, which is essential, as is an appropriate support payment.

A key ask, which is mentioned in Mark Griffin’s motion, is that eligibility for carers allowance be extended. The allowance is in place for only eight weeks after a bereavement. That is welcome but, after eight weeks, many carers will in no way have rebuilt their life or their role in the community. Carers need the period of financial support to be extended to six months. That would make a substantial difference in the Glasgow region, which I represent—it would help up to 15,000 people there, including 1,558 people in the Rutherglen constituency alone.

The debate has been worth while because it has devoted time to the important issue of supporting unpaid carers and highlighted the support that we can give them when they suffer bereavement as a result of the death of the person they have cared for. Mark Griffin’s excellent motion sets out significant asks that I hope that the cabinet secretary will reflect on and take forward.

18:46  

I add my thanks to Mark Griffin for lodging the motion and securing the debate. I also thank those who prepared the report that we are discussing.

We have heard from other members that any loss is difficult and traumatic. People need a period to mourn and reflect before there is any possibility of moving on. That is particularly true for those who have had caring responsibilities towards or at the end of someone’s life.

In a previous life as a church minister, I took funerals of people who had died from cancer or other terminal illnesses. The carers who were left perhaps needed longer than others to come to terms with that, to adjust their lives and to get the house back to a different arrangement. Suddenly, doing what we all consider to be normal things was back on their agenda.

Some of the report’s recommendations are welcome; I hope that they will get cross-party support not only tonight, but beyond. Extending from two to six months the period for which people get money is sensible and would be welcome, but the greatest concentration should be on the support that people need in order to get back into employment. Such people have often been away from employment for years, and things such as technology and how to prepare a CV or for an interview will have moved on. Most important is that an individual’s confidence might have gone. Any support that local authorities, the third sector and others can offer to equip a person to feel able to go back into employment at the right time for them is welcome.

I hope that the debate will start a bigger debate and that the report will not sit on a shelf, but will bring together groups in civic society and bring together political thinking so that we can move forward.

I thank Mark Griffin again for lodging the motion, and I look forward to hearing the cabinet secretary’s response.

18:49  

I begin by thanking Mark Griffin for bringing this important matter to the chamber and for his contribution, which was considered and thoughtful—as, indeed, were the other speeches.

We know that unpaid carers play an important role in Scotland, and the Covid-19 pandemic has shone an even brighter light on the significance of that role. The Scottish Government has remained in close contact with carers’ representatives during the pandemic in order that it could understand their needs and concerns and act accordingly. We are absolutely committed to supporting carers, as they support others, now and into the future.

However, our support does not and should never end when a caring role comes to an end. That is especially true when that is the result of the death of the cared-for person. As Mark Griffin and others have said, at the same time as coping with their grief and loss, carers can face big life challenges in adapting to their new life without that caring role.

The report from Marie Curie, Reform Scotland and Sue Ryder highlights the challenges that carers can face following the death of a cared-for person. It also recognises that, because of the pandemic, many more carers might have experienced such losses this year. Across Government, and working with our partners in the third and public sectors, we already provide a wealth of support that can help carers with the transition from the caring role. We continue to listen to and work with carers and their representatives to raise awareness of what is already available and, importantly, to consider how support can be improved in the future.

For carers who are experiencing bereavement, we already work closely with NHS boards, health and social care integration authorities and the third sector to make sure that our bereavement support services meet their needs. We have continued that work throughout the pandemic so that those services continue to be available during this difficult time. That has included provision of funding to accelerate the expansion of remote bereavement support to ensure that it is available across Scotland, with further funding having been provided in October to prepare for any increase in demand over the winter.

The report also highlights the importance of advice and support for carers following bereavement. Under the Carers (Scotland) Act 2016, carers already have the right to a personalised plan to identify what is important to them and what support they need. Our statutory guidance specifically highlights that those plans can include bereavement support, where that can be anticipated.

Carers also have rights to information and advice, which are usually delivered by local carer centres, and which the 2016 act specifies must include information and advice on a number of the areas that are highlighted in the report, including income maximisation, education and training, and bereavement support.

However, it is no good establishing such rights and local support if people do not know about them. As the number of carers and the pressures on them have increased this year, helping people to see themselves as carers and to understand the support that is available has become an even greater priority. That is why, last week, we launched a carers national marketing campaign to help more people to recognise themselves as carers and so that they know about the support that exists for them. I take the opportunity to encourage all members to promote the campaign in their constituencies. Members can find out more at the campaign website, which is www.nhsinform.scot/caring.

We have also heard about the challenges that many carers will face in seeking to return to work, particularly given that they might have been out of the labour market for some time. Our “No one left behind” approach to employability is aimed at ensuring that carers, like others who face barriers to entering the labour market, receive flexible and personalised support that meets their specific needs and aspirations. A range of funding and support is already available, including through individual training accounts and our parental employability support fund, as well as from our fair start Scotland employability service.

We also recognise—as have contributors to today’s debate—that the majority of Scotland’s unpaid carers are women. Our women returners programme was launched last month and, backed by £500,000, it will fund projects to support women back into work after a break in their careers.

The report also highlights the financial impact on carers of the loss of a cared-for person when a caring role comes to an end. It recognises that support is available through our funeral support payment, to help to reduce the financial difficulties that people might face in paying for a funeral. We have significantly increased eligibility for that support over eligibility for the United Kingdom Government payment that it replaces, which will allow us to help about 40 per cent more people, who would previously have received nothing.

We are committed to ensuring that carers and others can access all the support to which they are entitled, which is why we published a benefit take-up strategy last October, and last month wrote to encourage the UK Government to do the same.

The report calls for carers to continue to receive the carers allowance and extra support through our carers allowance supplement for up to six months after the loss of a cared-for person, and for a new payment to be created to support carers after a caring role has ended. From working with and listening to carers and the organisations that support them, I know that support at the end of a caring role, particularly following the death of a cared-for person, is one of the areas in which they would like to see real change in the future.

To build on what we have learned from those conversations and a range of research, early next year we will consult on the aims for our replacement benefit for carers allowance—Scottish carers assistance—to ensure that it better meets the needs of carers, and has stronger links to wider support. As we continue with conversations around the replacement, we appreciate the input from Marie Curie, Sue Ryder and Reform Scotland in the report, and would very much welcome their continued contribution to the conversations, as we go forward.

The report and the debate today have rightly highlighted carers’ stories and experiences of the end of caring roles. Making sure that carers are heard and that their views and needs shape our work is absolutely integral to our approach to supporting carers. We have maintained that approach throughout the pandemic; I guarantee that it will continue into the future.

As we develop our replacement for carers allowance, I appreciate and look forward to continued input from the organisations that are behind the report. I will also welcome contributions from members from across the chamber as we consider how we can better support our carers in the future.

Finally, I echo the thanks of contributors to today’s debate to Scotland’s carers for all that they do—in these exceptionally difficult times, as always—to provide vital support to friends and family with terminal illness and at the end of their lives.

Meeting closed at 18:57.