Meeting of the Parliament

Meeting date: Thursday, January 10, 2019

Official Report 1314KB pdf

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End-of-Life Carers Support

The next item of business is a members’ business debate on motion S5M-10559, in the name of Mark Griffin, on the report by Marie Curie and Macmillan Cancer Support, “Getting it right for carers supporting someone at the end of life”.

Motion moved,

That the Parliament welcomes the new report by Marie Curie and Macmillan Cancer Support, Getting it right for carers supporting someone at the end of life; notes that the report found that too many people caring for someone at the end of life are going unidentified and unsupported, carers supporting someone at the end of life without support are at risk of falling into crisis and a breakdown of care, the decline towards end of life and death can often be rapid, sometimes quicker than expected, and that the support needs of carers can be very high at this time; further notes that the report sets out that carers need to be identified early, need good care co-ordination and information to support them in their caring role, need respite and/or replacement care to give them a break, and that more needs to be done to identify those in caring roles, especially those caring for someone at the end of life and particularly by those in primary care roles, such as GPs and district nurses, and recognises the report’s recommendation that all those caring for someone at end of life, including those in Central Scotland should have their needs assessed quickly and a plan put in place to support them.

12:52  

I am grateful to the members whose support for the motion made this debate possible, and to Joe FitzPatrick for his interest in the issue.

Nearly 100,000 people in Scotland will have spent the Christmas period caring for someone living with a terminal illness. It is estimated that, each year, around 40,000 to 46,000 people in Scotland with a terminal illness pass away. It is tragic that, for some, that might have been their last Christmas together.

It goes without saying that, even if we try to cherish every last moment with a loved one, the impending loss can cause people to grieve even before that person passes. On top of that heartbreak, the person who is caring for their loved one faces a new and demanding experience that requires them to get to grips with the terminally ill person’s condition, their decline and the public services that they come to rely on. They face new problems every day, and that is when carers need the most help and is precisely when society and the national health service should be stepping in to provide intensive help for all involved.

“Getting it right for carers supporting someone at the end of life” is an important report. It highlights the problems faced by carers, especially those looking after someone who is terminally ill and approaching the end of their life. I thank Marie Curie and Macmillan Cancer Support for their work on the report. In particular, I thank the research team—Susan Swan, Emma Carduff and Richard Meade of Marie Curie—as well as Macmillan, the Scottish Government, carers centres and especially the carers who took part and shared their very personal stories.

Regardless of the time of year, out of love and kindness, carers dedicate themselves to friends and relatives. They save the NHS billions, they thrive in their roles and they enhance the quality of life for those they care for.

However, we know that many carers will themselves experience ill health. The impetus behind the Carers (Scotland) Act 2016, which has now been implemented, was to attempt to respond to that sorry reality. Physically and emotionally exhausted, frightened and unsure, some carers are, sadly, overwhelmed by the demands that are on them.

The report highlights that caring for someone who is terminally ill can be complex, highly demanding and, at times, all consuming. Many carers will watch as their loved one gets support while they themselves are rarely asked about what help they need. Underlining their desperation, one carer told researchers:

“I didn’t even think ‘Where can I go for help?’”

That is just one example—the report cites many more. Another carer told researchers:

“It’s the bashing your head against a brick wall, it’s going from crisis, to crisis, to crisis.”

Another said:

“I started seeing myself as a carer when I was taken into hospital one night with a suspected heart attack because I was so stressed.”

Carers need support to help them to care. When that support is not there, their own health is put at risk. It is therefore vitally important that councils and the Government ensure that adult carer support plans or young carer statements are requested and agreed. I hope that the minister will be able to tell us how many plans have been requested and completed.

Last year, with the support of Marie Curie, I attempted to amend the Social Security (Scotland) Bill to ensure that carers get their allowance fast tracked alongside the fast tracking of benefits for those who are terminally ill. Similarly, the fast tracking of the plans for carers of terminally ill people could make the difference to whether carers get support in time, and I hope that the minister will be able to say when that fast tracking will come into force.

The report makes it clear that the mental and physical stress of caring and beginning to lose someone impacts hugely on a carer’s ability to grieve after bereavement and on their long-term quality of life. The chance to talk about their role, getting peer support or having a break from caring—whether for a day or for just a few hours—are all referenced as being vitally important to improving the situation.

In 2018, the carer’s allowance supplement for low-income carers was introduced. That financial support is the start of the journey to recognising the contribution of carers. I was delighted to support and improve that measure by protecting it from the effects of inflation.

Although I have been critical of the Government’s decision to leave carer’s allowance in the hands of the Department of Work and Pensions for now, the powers must be used with carers’ backing. That is precisely why I have begun to ask carers how long that financial support should continue once the cared-for person passes or goes into long-term hospital care. In both cases, the carers who have given up so much to care for their loved ones are expected just to return to the life that they had before caring, with no support and no financial assistance, as if they can just automatically pick up their job from where they left off. If we in this Parliament are ambitious with the new powers, I hope that we can make those changes for carers, so that they face less financial stress while caring.

One of the most intriguing parts of the report deals with the difficulties that we encounter in identifying carers. Many carers see themselves not as a carer, but as a mother, a husband, a son, a sister, a friend or, sometimes, a neighbour. As a result, they will not ask for help or even think that they are entitled to help because they see themselves just as doing what they would expect of themselves for someone they love. It is clear from the Marie Curie and Macmillan study that, tragically, there are too many missed opportunities to identify those carers. Fundamentally, the research shows that it makes a huge difference when carers are identified and get support. We need to do more on identification so that plans can be put in place and a carer’s own health supported. General practitioners, district nurses, social care staff, third sector workers, loved ones, family members and friends—everyone has a part to play. I hope that the minister can say how, across Government and communities, we can better identify the carers of people who are terminally ill to make sure that they get the support that they need.

Caring for someone at the end of their life will be one of the most difficult and challenging experiences for people and families to face. People can decline quickly, and as they do, the support that the carer needs increases rapidly. Those last stages of life are painful and tragic. Carers struggle to keep up with the loss physically and emotionally, but we can step in to help them get through and it is important that we do so.

The report shows the areas on which we must focus that support to improve the lives of carers. I look forward to hearing from other members and to hearing the Government’s response to the report.

We will move on to the open debate. I have quite a few requests to speak so I ask members to keep their speeches to no more than four minutes.

13:00  

I start by thanking Mark Griffin for bringing this hugely important topic to Parliament for debate. I also thank both Marie Curie and Macmillan Cancer Support for their joint report, “Getting it right for carers supporting someone at end of life”.

It is an important, complex and emotive subject. It is crucial that today’s members’ business debate brings increased awareness of carers’ rights. The carers charter outlines a carer’s right to an adult carer support plan from their local authority. The process of identifying a carer’s needs through that plan should happen as quickly as possible. That would mean that support is provided when it is needed.

Two aspects are particularly important for ensuring a swift provision of support: identifying carers, and increasing awareness of their rights. The report recommends that identification of carers is seen as everyone’s responsibility. It also highlights general practitioners and district nurses as professionals who are well placed to identify them. The presumption should be that a patient with a terminal illness has a carer looking after them.

Early identification can lead to health professionals proposing an adult carer support plan or to the carer directly requesting a plan. The carers charter promotes both routes towards receiving support.

In Glasgow Anniesland, we are appreciative of the work done by Macmillan in providing support and information to carers and patients at the Beatson cancer centre at Gartnavel. Such services can signpost carers’ rights to people at an emotional and difficult time. Marie Curie has also provided significant support to people facing the situation of caring for a loved one with a terminal illness. In 2017-2018, Marie Curie volunteers visited families more than 10,000 times to provide face-to-face support. We can all agree that that is an incredible and very valuable effort.

In the final stages of the cared-for person’s life, it is right that the carer is focused on how they can best support their loved one. However, as Mark Griffin mentioned, at that very difficult time, the carer’s physical and emotional needs can often be put to the side. In addition, there can often be an increased financial burden on carers, particularly if they have had to stop working.

The report highlights that if the carer has unmet needs there may be a detrimental effect on them. In the last three months of the cared-for person’s life, a carer will be looking after their loved one for an average of 70 hours a week and will often have poor sleep patterns. The combination of those different factors can often lead to carers becoming themselves more susceptible to viruses and other illnesses, for example.

The report warns that unmet carer support needs could lead to a breakdown of care and to greater complexities in the healthcare provision that is required. Quick provision of support for carers is pivotal. It can avoid the breakdown of care and means that carers who are family members are treated with the dignity and care that they deserve at such a difficult time.

Identifying carers and assessing their needs quickly are key to enabling the quick provision of support, as the report thoroughly evidences. As support for carers increases, we need to get the message out about what their rights are and how they can access them. It is my hope that the debate goes some way towards achieving that.

13:04  

I, too, congratulate Mark Griffin on securing time in the chamber for this debate on what is, as Bill Kidd said, an important topic. I am delighted to have the opportunity to contribute to it.

Many members will have experience of family members or friends approaching the end of life. Some years ago, my grandmother died from cancer in the Ayrshire Hospice, and the care that she and my grandfather and family received helped us immeasurably at that difficult time. Not long after that, my grandfather also died from accelerated dementia while in the care of another hospice. Prior to my grandparents entering those hospices, my family gave them as much support as possible. At the time, I was lucky, because my grandparents did not live too far away from me and, as I was involved in sport, I could drop in every day. My father was self-employed and also had a certain amount of flexibility, which allowed him to spend time every day with my grandparents.

I recognise that not all families are in that situation. I wonder how my grandfather would have coped with my grandmother’s situation as her health deteriorated and then with his health issues had the family not been close by and able to help and had he not finally received the very best of care from the hospice. The truth is that, as pointed out in the Marie Curie and Macmillan Cancer Support report and in Mark Griffin’s motion, too many people do not receive that kind of dignified support as they approach the end of life. According to the report, a quarter of people miss out on the palliative care that they need, which leads to an accelerated deterioration of their condition.

Crucially, support for carers and their health is often not considered. The pressure that they are under in balancing their lives—they often have families to care for—while caring for a terminally ill relative is all too frequently overlooked. I have often said in the chamber that we need to consider the health of our healthcare professionals as they care for us, and that same ethos should be applied to those who care for someone with a terminal illness. If we do not ensure that the carers are looked after, they will be in danger of falling into ill health, to their detriment and the detriment of those whom they are caring for. We need to recognise that there is huge pressure on carers as they manage the decline of a relative. We need to recognise the stress and worry that are associated with the thought, “What will happen if something happens to me?”

I believe that primary care has a big role to play. There is, I think, agreement across the chamber that we need a shift from secondary care into community care, and support for carers provides a case in point. General practitioners and district nurses should be able to identify those in a caring role—although those people should also be able to self-refer—and, crucially, direct them and their families to the help that they need. It is about communication and developing a system that is easy to access and utilise. Technology will inevitably play a key role in the development of such a system. If properly enabled, the system will potentially help to prevent some GP appointments and hospital visits.

In that respect, it is not necessarily just about increasing investment; it is about better utilisation of resource. We know that GPs are under increasing pressure so, in developing such systems, we must always ensure that they are designed to take the burden away from GPs by making them easy to access and use. The outcome that we seek is end-of-life care that allows the patient peace, dignity and respect, that provides the carers and family members with breathing space to keep stress at bay and that allows the family and the patient quality time together.

I put on record our thanks to Marie Curie and Macmillan Cancer Support for producing the report and to all carers, professional or otherwise, who deliver palliative care and comfort in the most trying of circumstances. Today, we are debating the need to understand and identify those who are carers and the ability to signpost them to the help and support that they require. That does not seem like too much of an ask.

13:09  

I thank Mark Griffin, first of all for being a tireless champion for carers, and for securing this important debate, which I know is close to the hearts of many people across Scotland. I fully support the motion and commend Marie Curie and Macmillan Cancer Support for their report highlighting the needs of people who care for loved ones towards the end of their lives, and I thank those organisations for the briefings that they have provided for the debate.

In Central Scotland, the parliamentary region that I share with Mark Griffin, more than 7,000 people need palliative care every year, and countless friends, relatives and loved ones are involved in providing care. As others have said, caring for carers is hugely important, and I am grateful that carers in my area of Lanarkshire have the support of 45 nurses and 94 volunteers through Marie Curie and the wonderful services of Lanarkshire Carers Centre and others. Staff at Lanarkshire Carers Centre have pointed out to me many times that meaningful conversations with carers can make a real difference and help people who are supporting loved ones towards the end of their lives. Elsewhere in our region, there are 57 Marie Curie volunteers in Forth Valley and six nurses. That support is invaluable. As Bill Kidd mentioned, the Carers (Scotland) Act 2016 places a duty on local authorities to prepare appropriate plans for carers.

The Marie Curie and Macmillan Cancer Care report’s findings reinforce how complex it can be to identify carers—as Mark Griffin said, many people care out of love and do not see themselves as carers. It can be difficult to get support to carers, and when people who are carers reach out for help, because our health and social care system is so stretched, the system is not always joined up, which can mean that people do not get the support that they desperately need.

Support must be available quickly, because the decline towards end of life and death is often swifter than expected. Bill Kidd powerfully warned us that the breakdown of care is a serious risk, and I will be interested to hear the minister’s response. Other groups that I have met, including together in dementia everyday—TIDE—say that there is not enough bereavement support for carers when someone has died. I would like to hear what the minister and the Government are doing to address that.

When a terminal diagnosis is communicated to a family, it turns everyone’s lives upside down. Other members have talked about the financial impact, which can only make a bad situation worse. People have to take time off work, and there are travel costs and the additional costs of getting to hospital and so on. There is a big role for employers, who can help to prevent families who are affected by terminal illness from falling into crisis. The carer positive accreditation scheme enables employers to give carers flexibility to deliver care at home.

The GMB trade union—of which I declare that I am a member—and the Trades Union Congress have the dying to work campaign, which urges employers to offer greater employment protection to workers who are diagnosed with terminal illness and want to carry on working. I am eager to work with the Scottish Government to see what we can do in Scotland to get behind and implement some of the measures in the dying to work campaign.

Caring for a loved one towards the end of their life is often described as a privilege and, as Mark Griffin’s motion conveys, there is love at the heart of this debate. Carers play an invaluable role for their families, and it is important that we do not allow them to become isolated and lonely or to miss their own urgent medical appointments and put their health at risk. I am grateful to Mark Griffin for securing the debate and I look forward to hearing the minister’s response.

13:13  

I, too, thank Mark Griffin for bringing to the chamber this important debate, in which I am very pleased to speak. In an unpredictable, ever-changing world, Marie Curie is a constant reassurance, like a big comfort blanket, that gives people the knowledge that they, or a family member or friend, will have choice and dignity in the event of terminal illness.

In 2017-18, Marie Curie nurses cared for 32,692 people in the United Kingdom. The combined work hours of more than 2,000 nursing staff members reached 1.2 million hours. That work was funded half by the national health service and half by charitable donations. Last year, Marie Curie invested £3.3 million in palliative care research. More than 4,000 people were involved in research studies funded by Marie Curie or carried out by its researchers. There are Marie Curie fundraising groups in my constituency in Bishopbriggs, Kirkintilloch, Lenzie and Bearsden, and they are just some of the 85 groups in Scotland that are doing fantastic work.

The latest research from Marie Curie, which I thank for its briefing, and Macmillan Cancer Support has found that too many people who care for someone at the end of life are going unidentified and unsupported. The research rightly highlights that carers who support someone at the end of life without support are at risk of falling into crisis themselves, and a breakdown of care can follow.

Carers need to be identified early, and it is the responsibility of everyone—not least GPs, social workers and district nurses—to identify them and signpost them to Marie Curie so that they can at least have a break, even just for a few hours. It is also vital that carers are aware of the financial support and advice that are available. Alarmingly, the Carers UK 2017 survey found that the number of carers identified by GPs had fallen in the previous three years, with only 9 per cent of carers reporting that their GP knew that they were caring for someone.

Marie Curie is a household name. As Mark Griffin and other members have said, the problem is that carers often do not see themselves as such; they see themselves as mothers, sons, brothers or friends doing what they do out of love. They do not self-identify as carers or ask for help, often to the detriment of their own health. Physical care can require a level of fitness and strength that is increasingly difficult for carers to provide, especially with the ageing demographic of today’s carers.

Isolation, combined with sleep deprivation and not always being free to leave the person who is being cared for, can have a significant impact on carers’ mental health, feelings of loneliness and wellbeing. Carers should know that Marie Curie is always there to step in and help them to care for their loved one with tenderness and professionalism.

Another aspect of the charity is that it is always at the forefront of the ever-changing needs of society and, working with MND Scotland, it led a campaign for a fair definition of terminal illness to be included in the Social Security (Scotland) Act 2018. The new definition bases the decision on whether someone has a terminal illness on clinical judgment, thereby removing the last-six-months-of-life restriction that is currently used by the DWP. Marie Curie is now working to help shape the accompanying guidance.

Marie Curie nurses give people with a terminal illness choice and dignity. Put simply, it is a fantastic charity that makes it possible for people faced with a terminal illness to have the choice to die peacefully, in their own homes, surrounded by the people they love.

None of us knows whether we will need the support of Marie Curie nurses or when we will need it, but we should all be eternally grateful that if we do need it, they will be there.

13:16  

Like other members, I thank Mark Griffin for bringing this important issue to the chamber. I also thank Macmillan Cancer Support and Marie Curie for their on-going work and for the research that we are debating.

There are almost 800,000 unpaid carers, including young carers, in Scotland, and we know that they play a hugely valuable role in providing care, support and love to friends, family and neighbours in a whole variety of circumstances, which are often extremely challenging. Caring for someone at the end of their life can be especially difficult, as the report by Marie Curie and Macmillan Cancer Support highlights and as Mark Griffin described so well.

As well as being hugely rewarding, caring can be physically and emotionally demanding, especially when the cared-for person is nearing the end of their life, when more intensive and complex care is often required. That is why I share the concerns that are expressed in the report, which have been echoed by members, that, at times, we are struggling to identify carers in that situation.

The report and today’s motion emphasise the importance of primary healthcare professionals in identifying those carers, but the report also reveals that, in the past three years, the number of carers identified by GPs has fallen, and only 9 per cent of respondents to the Carers UK 2017 survey reported that their GP knew that they were caring and offered extra support to fit their caring role. We know that demands on GPs have never been greater, but we must increase awareness of the need to recognise the carer’s role among all professionals and wider society.

Difficulty in identifying carers is especially worrying in the case of young people. My reading of the section of the report on young carers is that we simply do not know how many young carers are caring for relatives at the end of their lives. I would be grateful if the minister would address that when she closes the debate.

I draw attention to what the report says about the support needs of carers after the person they cared for has passed away. Caring for a loved one at the end of their life can be all consuming, and people might experience guilt, bewilderment and the loss of identify and purpose after the death. The support for carers in that position is not always what we would want it to be. The report says:

“There was a general sense of being abandoned once the person had died and many carers spoke of a sadness in the lack of professionals who offered condolences.”

In contrast, those carers who attended support services after their loved one died spoke of the benefit of those services and of being able to access peer support during that time.

I also want to mention the excellent work that is being done by the more than 40 organisations and individuals who are involved in the good life, good death, good grief initiative, which works to encourage all of us in Scotland to be more open in how we discuss death, dying and bereavement.

Before I close, I would like to focus on the report’s findings in relation to the financial pressures on carers who provide end-of-life care and the opportunities that we now have with the devolution of carers allowance. The survey that was conducted for the report found that many of the carers were unsure of what financial support they were entitled to, with one saying that they did not even know what carers allowance was. That is consistent with the figures from Turn2us, which suggest that, across the UK, £1.3 billion-worth of carers allowance owed to 400,000 people goes unclaimed every year. That is at a time when costs can be incredibly high. With so much going on, it is understandable that some of the carers were not able to find the time to claim or did not know that they could claim carers allowance.

That being the case, raising awareness is absolutely key, and I ask the minister to consider whether there might be scope to pay additional assistance to those carers who provide particularly intense and demanding forms of support, such as caring for people at the end of their lives.

Carers perform a highly valued role, often in difficult circumstances—none more so, perhaps, than when the person being cared for is coming to the end of their life. We cannot thank carers enough, so it is vital that we reflect the importance of their role by offering the support that they need while they are caring and afterwards. The report shows that we are not always doing that at the moment, and that needs to change.

13:21  

I echo the thanks that have been offered to Mark Griffin for bringing this important debate to the chamber and for the report that has been published by Macmillan Cancer Support and Marie Curie, “Getting it right for carers supporting someone at end of life”. Their voices are important in any issues affecting end-of-life care; I also recognise the longitudinal commitment that Mark Griffin has shown to such issues.

Such debates offer us an opportunity as parliamentarians to pay tribute to the unpaid carers who support countless people in our country. Carers are the bedrock on which all our health and social care strata are built. Without their support, everything would collapse. I am not being overly dramatic in saying that. They offer that care out of a sense of duty to and love for the people around them. As policymakers, we often exploit that love, because we could not match that care in any public policy offering that we could come up with.

My mother-in-law was one such carer. She never thought of herself as that. Her husband Rob was diagnosed with multiple sclerosis at the age of 41. For the last 20 years of his life, he spent much of his time confined to a chair. My mother-in-law had never really suggested that she needed help and we all just assumed that she and Rob were quietly enjoying their life together until, one day, she confided in me that she had had to flag down a passing motorist when Rob had had a fall and she had been unable to lift him herself. At that point, we realised that they needed a bit of extra support. That quiet dignity is so commonplace among our unpaid family carers and they would not seek to have it otherwise.

This time last year, Rob went into hospital with an infection and it quickly became apparent that he had an aggressive form of cancer that was going to limit his time with us to a matter of weeks, if not days. The staff at the hospital were excellent and the care that he got in the hospital was excellent, but it was a noisy place, where he was without his home creature comforts.

Getting Rob home—because it was clear that he was beyond the reach of medical care—was our number 1 priority. We came up against a complicated landscape, which is all too commonplace an experience for people who are caring for loved ones in such situations. The fact that there was not a health and social care package that could be delivered to him at home meant that his departure from hospital was delayed.

It was only after our insistence and because two of his offspring are GPs that the health and social care partnership agreed to release Rob to our care. Thankfully, it bolted on some support later, but it was very much the Marie Curie nurses who were the cavalry in that situation. I do not think that we could have offered Rob those last six days in a quiet bubble of love, light and happiness were it not for their support. They taught us basic humanitarian things that we would not think of associating with end-of-life care, such as massaging moisturiser into Rob’s arms because his skin was dry and because doing so gave him comfort and companionship.

That support did not end with Rob’s passing. If we could choose the manner of our passing, I would choose something like that, because those nurses gave him dignity and comfort. They continued to support our family. They arrived days after the funeral with a bouquet of flowers and a private mobile telephone number through which they could be contacted. That was a level of support that I never expected but for which I am eternally grateful. Such nurses are supported by other organisations, such as Cruse Bereavement Care, which offers after-life support to carers left behind.

Let us remember that, as our papers state, 11,000 people dying in this country each year do not get the end-of-life care that they need; one in four misses out on palliative care. Supporting those around them is absolutely vital to improving their last days. That starts with identification. Only 9 per cent of carers recognise that they are carers or reveal that to their GPs. The figure is even worse for young carers.

We need to do more as a Parliament for each of those individuals, because behind each of them is an opportunity to offer some of our most vulnerable citizens the right and opportunity to have a dignified and comfortable death.

13:25  

I thank Mark Griffin for the opportunity to debate this important subject. Equally, I thank Macmillan in a personal capacity as someone whose family has benefited, as have so many others, from its support over the years in circumstances of terminal illness.

Given that I am statistically closer to death than anyone else present in this debate, it is worth my saying that death is the last great taboo. Therefore, we often do not engage with the idea of death and the necessity to prepare for it in a way that would support to an adequate extent the person who is departing and those who care for them. That lack of recognition is part of the issue.

I make the minor observation that one thing that has not emerged in the debate, which slightly surprised me, is the role of faith communities in supporting families of terminally ill people. The visit from the priest, pastor, minister or elder of the church can often be a very important part of the support before death and the bereavement process after death to which Mark Griffin and Monica Lennon referred.

As a GP’s son, I am aware of the conventional view of bereavement that there are five phases and that, basically, it lasts six months. As Monica Lennon and Mark Griffin said, it is important that there is support for people in that time. It does not matter how unexpected a death is or how long-anticipated it is—it is a shock when it happens, and bereavement support for the carer is very important indeed.

Modern medicine has created particular problems in this regard. People survive after diagnosis of a terminal condition much longer than they used to. They might survive with comorbidities; people might have many different conditions and a complex set of needs and require support from the medical profession. In that sense, we create a problem for the system of supporting carers.

We expect more of carers, given those comorbidities, and we expect longer-term support because of the generally longer survival times after diagnosis. Therefore, this whole issue has become more important than it ever was.

We cannot start early enough to help people to understand the process of death and bereavement. This might sound quite trivial, but that is one of the reasons why it is quite important for children to have pets—it confronts them with the idea that nothing in life is forever, because pets tend to die, and that is as true of us as it is of our pets.

I hope that this debate makes its own modest contribution to engaging us with the idea that death is normal and natural. Indeed, it is important that we move out of the way to allow the next generation to come through.

Macmillan’s study is a very valuable contribution to understanding the pressures on carers and the support gaps that we need to address. As a rural MSP, I point in particular to the difficulties in reaching people in rural areas and in identifying carers there. In those areas, people are more likely not to be identified and to lack support.

We can never thank Macmillan too much; I do so again.

To allow time for our final member’s speech and the response from the minister, I am happy to accept a motion without notice under rule 8.14.3 to extend the debate by up to 30 minutes.

Motion moved,

That, under Rule 8.14.3, the debate be extended by up to 30 minutes.—[Mark Griffin]

Motion agreed to.

I am very pleased that the motion has been agreed to, but that does not give licence to Ms Wells or the minister to talk for 30 minutes.

13:30  

I am very grateful for the opportunity to speak in today’s debate. Like others across the chamber, I thank Mark Griffin for securing the debate. I also thank Marie Curie and Macmillan Cancer Support for their efforts in producing the report.

One of my most memorable experiences as an MSP was a visit that I made to the young carers festival in West Linton in 2017. The people whom I met were not all caring for someone who needed palliative care, but the visit brought home just how all-encompassing caring for a loved one can be. Although the children and young people with whom I spoke made no complaints about the situation that they were in, it was evident that personal sacrifices had been made and that their lives were noticeably more difficult than those of their peers. It is vital that we do all that we can to get the right support in place for people who are caring for someone who is nearing the end of their life, because that time can be emotionally exhausting and, for some, completely unexpected.

The Scottish health survey estimated that more than 788,000 people were caring for a relative, friend or neighbour in 2016. Although it is difficult to determine how many people are giving palliative care, we know that between 40,000 and 46,000 people with a terminal illness die in Scotland every year, and that, across the UK, about one in 12 carers cares for someone with a terminal illness.

As noted in the report, the main issues are that carers are not being identified—sometimes not at all and, for many, not early enough. That means that carers are not being supported, and the consequence is a lack of good care co-ordination or no support at all.

Often, the path into a caring role can be a gradual one, with many people believing that they are simply carrying out a social role that is expected of them. As many others have said, carers do not see themselves as such, because of the busyness of the role and because, for many, it is an evolutionary process.

The report by Marie Curie and Macmillan notes the

“clear need for health professionals to empower carers to self-identify”.

That could be done through simple interventions, such as leaflets in GP waiting rooms or a public awareness campaign. As Rona Mackay said, by empowering carers to self-identify, there is a greater chance of support plans being put in place. Being proactive in that process would mean that carers could receive financial as well as physical and psychological support. Notably, the report highlighted

“a lack of knowledge”

among carers

“as to how to access services to meet their needs”.

Many carers felt hindered by poor communication between health professionals and by not having a central point of contact. Given the juggling demands of carers, many of whom still work, it is extremely important that care is carefully co-ordinated in advance, with a central professional being able to provide care in times of crisis, if needed.

The report highlights the need for respite. Given that 23 per cent of carers said that they did not know how to get a break, that needs to be prioritised. Sleep deprivation is a major issue for many carers, and time away from the caring role provides people with the opportunity to maintain their physical and emotional health.

I again thank Mark Griffin for securing this debate. Experiencing the death of a loved one is difficult enough, but to care and nurture someone right to the point of their death is even more difficult. For that reason, I welcome the publication of the report and ask that the calls that it makes be duly acted on.

13:34  

I add my congratulations to Mark Griffin on securing this important and timely debate. It has been valuable to hear members from across the chamber highlighting the particular pressures on those who care for people with a terminal illness. I particularly thank the members who gave their personal experiences, including Brian Whittle, Alex Cole-Hamilton and Stewart Stevenson. I am grateful for the opportunity that the debate has provided to discuss the priorities for supporting people who care for people with a terminal illness.

I join other members in welcoming the research in the report from Marie Curie and Macmillan Cancer Support. It is a valuable piece of work that has gone further than the slightly narrower focus that we commissioned from them. The Scottish Government funded the study in order to inform our work on developing forthcoming regulations on priority timescales for identifying the needs of carers of people with terminal illnesses. Mark Griffin asked about the timescale for that, which is important. I was going to cover that later, but I confirm now that we will consult on regulations in the coming weeks. I will talk later about how we formulated the regulations on which we will be consulting.

It is worth emphasising that the research was carried out before the new rights under the Carers (Scotland) Act 2016 were put in place last April. That system of carers’ rights makes carer support more consistent and personalised to individuals’ needs, in order to help to protect carers’ health and wellbeing and to sustain caring relationships. A number of points on that that have been made by members. Those rights now extend to all carers so that they can access support earlier in their caring journeys.

As is highlighted in our programme for government, working to embed those rights for Scotland’s 790,000 carers is a priority. Alison Johnstone asked whether we know how many young carers care for people who are at the end of their lives. We estimate that there are some 44,000 young carers in Scotland, but we do not, as far as I am aware, currently have figures on the proportion who provide care for people with a terminal illness. However, as the 2016 act beds in, it is likely that the numbers will come out. If the number is available, I will get back to Alison Johnstone with it.

Across the Government, a number of pieces of work gel with the 2016 act. We intend to improve carers’ social security benefits, to accelerate the integration of health and social care and to reform social care to make sure that it is fit for the future. Those actions should help carers’ overall experience.

We heard about the importance of making sure that carers can access support early. As Bill Kidd said, a key aspect of our work is to help carers to be aware of their rights to support, and of how to access that support. Our carers’ charter, which summarises carers’ rights under the act, is now widely used across Scotland, and there is a series of practical “What to expect” leaflets from the Coalition of Carers in Scotland. Advice on carers’ rights is also accessible through the information and advice services for carers that are now required in every area.

Mark Griffin, Brian Whittle and Monica Lennon all mentioned the importance of carer identification, which is an important theme in the report; identification is key to getting it right for carers. A main factor is that staff who come into contact with carers are able to identify them as carers and help them to access support. We are supporting local staff training and awareness in a number of ways, including our funding of an excellent e-book that was produced by the Scottish Social Services Council, and our work with national carer organisations and NHS Education Scotland.

Rona Mackay and Annie Wells talked about how empowering it is for carers to self-identify, but we must make sure that information is available so that people understand their rights. It is also important to mention the new duty to involve carers when people are discharged from hospital, which is an excellent opportunity to identify carers earlier.

I think that Annie Wells mentioned short breaks. Alongside carer identification, the report highlights the value of breaks from caring. Under the Carers (Scotland) Act 2016, authorities must now consider whether support should include a break from caring. We are continuing to fund the non-statutory breaks fund, through which we have spent more than £26 million since 2010.

The motion and report rightly highlight the need for co-ordination of support. That is central to the new adult carer support plans and young carer statements, which are at the heart of the Carers (Scotland) Act 2016. All carers have the right to a plan to identify their personal outcomes and individual needs. The plans also provide tailored information about support that is available locally, future care planning and the support that the local authority will provide.

Mark Griffin asked about the number of adult carer support plans and young carer statements that have been requested. We have asked local authorities to provide figures that cover the first six months. The figures are not yet available, but we will make sure that they are made available to members. That will be a test of how awareness of the Carers (Scotland) Act 2016 is filtering across the country.

When scrutinising the Carers (Scotland) Bill, Parliament decided that carers of people with a terminal illness should have priority access to the plans. That will require legislation. As I said, we commissioned the report from MacMillan Cancer Support and Marie Curie to inform that work. We have been working with both organisations on proposals for regulations, which we will publish for consultation in the coming weeks.

Local authorities and health and social care partnerships have told us that they already prioritise such carers, but we want our regulations to ensure that they receive support quickly, without compromising the quality of support or creating unnecessary bureaucracy.

Monica Lennon asked about bereavement support. Under the Carers (Scotland) Act 2016, each local authority carer information and advice service has to provide information and advice on treatment and support for carers. We need to make sure that, as the 2016 act is implemented, that is happening and that it is people’s experience on the ground, because that is very important.

I acknowledge the contributions from across the chamber and the excellent work of MacMillan Cancer Support and Marie Curie. Most important, I acknowledge the contribution of carers who look after loved ones who have a terminal illness. I reiterate our commitment to doing what we can to make sure that they can access the support that they need and deserve, when they need it.

13:43 Meeting suspended.  

14:30 On resuming—