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Chamber and committees

Meeting date: Wednesday, March 6, 2019

Meeting of the Parliament 06 March 2019

Agenda: Portfolio Question Time, Urgent Question, Early Years, Supporting Scottish Agriculture, Business Motions, Parliamentary Bureau Motions, Decision Time, Marie Curie’s Great Daffodil Appeal


Contents


Marie Curie’s Great Daffodil Appeal

The final item of business is a members’ business debate on motion S5M-15292, in the name of Gordon MacDonald, on Marie Curie’s great daffodil appeal. The debate will be led by Emma Harper, on Gordon MacDonald’s behalf, and will be concluded without any question being put.

I welcome everyone to the public gallery. I know what all you Marie Curie volunteers are like, so I say right at the start of the debate that we will have no clapping, heckling or anything else. There will be time at the end of the debate to show any appreciation.

Motion debated,

That the Parliament welcomes Marie Curie’s Great Daffodil Appeal, which runs throughout each March; notes that 2019 marks the appeal’s 33rd year; commends the care and support that Marie Curie provides to over 8,600 people and their families every year in Scotland in their own homes, across 31 local authorities and in the charity’s hospices in Edinburgh and Glasgow; praises its information and support services, which are available for everyone affected by a terminal illness, and its volunteer helper services, which provide emotional support, companionship and information to people, carers and families; recognises the dedication, hard work and contribution of the charity’s volunteers across Scotland, including the 421 volunteers across the Lothians, who raise funds and awareness during the appeal and throughout the year to support its vital services; believes that there is a story behind every daffodil pin, with people donating and wearing them to remember someone who has died or to show support for Marie Curie’s services; understands that some people who need palliative care toward the end of life are still missing out, especially people with terminal conditions other than cancer; notes that the charity is highlighting that, every five minutes, someone in Scotland dies without getting the care and support they need at the end of their life; recognises that Marie Curie is working to change this and to improve the lives of all people living with a terminal illness, their carers and families; notes the view that wearing the daffodil pin unites millions of people together who believe dying people should get the care and support they deserve, and looks forward to as many people as possible supporting the annual appeal.

17:24  

I am pleased to have the opportunity to begin this important debate and raise awareness of Marie Curie’s great daffodil appeal. I am speaking on behalf of a motion that was lodged by my friend and colleague Gordon MacDonald, who is unfortunately unable to be here this evening. I understand that mair than 100 Marie Curie volunteers and staff from across Scotland are here tonight, including the charity’s new chief executive, Matthew Reed. I am sure that colleagues across the chamber will join me in welcoming them here to their Parliament. [Applause.]

I pay tribute to the Presiding Officer for the support that she has given Marie Curie over the past few years by leading members’ business debates, raising awareness and hosting parliamentary events. I will be doing all those things this evening. By the way, the Presiding Officer telt me that she was out on Saturday in her yellow top hat collecting for the appeal. I wish that I had been there to witness her sonsie face.

The great daffodil appeal is one of the most iconic and recognised fundraising drives of the year. People all over the country wear their yellow daffodil badges with a sense of pride that they are donating money to support Marie Curie to deliver its world-class palliative care services in our communities, its research, its campaigning and its information services.

Last year, Joan McAlpine and I hosted a great daffodil appeal blooming great tea party in our regional office to raise funds and awareness. Earlier this year, I joined the cross-party group on palliative care, which is convened by Bob Doris, so that I could learn more about what could be done.

Now that the member has name-checked me, I have the opportunity to highlight the wonderful service that the Marie Curie hospice in Springburn provides across Glasgow. Does Emma Harper agree that the work and dedication of the Marie Curie community nurses are invaluable to the city of Glasgow, including in 2017-18, when they supported 569 people at home by making 5,459 visits to those who were in really difficult periods in their lives?

I think that it is great that Bob Doris is in the chamber to support those of his Springburn constituents who are Marie Curie nurses and Springburn hospice workers. I thank him very much for being here.

The services that Marie Curie provides are possible only through the dedication of the many thousands of volunteers donning top hats and bibs, carrying collection buckets and braving the ever-unpredictable guid Scottish weather every March. The Scottish people are always incredibly generous, donating thousands of pounds every year. Whether the daffodil badge is worn in solidarity or in memory of a loved one, each tells a story. My story is contained in my 30 years as a nurse.

Last year, the daffodil appeal helped Marie Curie care for more than 8,600 people living with a terminal illness, as well as their family members, friends and carers. Marie Curie has a huge and irreplaceable impact on our communities at a time that can be incredibly difficult and challenging for families.

I remind members that the organisation takes its name from the scientist Marie Curie, who twice won the Nobel prize for her research into radioactivity. Marie Curie agreed that her name could be used for a hospital, staffed by women, to care for and treat women with cancer. The hospital was destroyed by a bomb in 1944, which led to its re-establishment as the Marie Curie charity.

Marie Curie provides care for people with any terminal condition, whether that is cancer, organ failure, heart disease or frailty. Increasingly, people present with multiple conditions. Marie Curie provides care across Scotland and the rest of the United Kingdom. It delivers front-line care services in 31 local authorities in Scotland through nursing and hospice services. Its volunteer befriending service—the helper service—is reaching out into new areas and caring for more and more people with an information and support service, which supports more than 10,000 people a year UK-wide.

Marie Curie is also the biggest funder of palliative care research. With two research leads and more than 16 research projects in Scotland, much of that expertise and knowledge is generated right here.

I am proud that the Scottish Government has an ambitious vision for everyone who needs palliative care to have access to it by 2021. I whole-heartedly share that determination.

The Scottish Government’s strategic framework for action on palliative and end-of-life care sets out that vision. It is outstanding to see that progress is already being made. That progress is supported by Marie Curie and others in the sector, and I look forward to hearing from the minister about the most recent and up-to-date progress that the Scottish Government and its partners have made.

We must acknowledge that, sadly, despite progress, some people are still missing out. In Scotland, around 43,000 people who die each year need palliative care, and estimates suggest that a quarter of those people miss out on some or all of the support that they need. We know that those dying with conditions other than terminal cancer—such as dementia, heart failure or frailty—are less likely to access palliative care. Older people, black, Asian and minority ethnic people, people who identify as lesbian, gay, bisexual, transgender or intersex and those who come from our poorest communities are far less likely to get the care that they need when they are terminally ill and dying. We all agree that that is not acceptable, and I am pleased that it is being recognised and addressed by a Scottish Government that is working for the people of Scotland.

The fact that Scotland has an ageing population is something to celebrate, but it means that, in the years to come, more people will live longer and there will be an increased need for palliative care. Marie Curie estimates that, by 2040, at least another 7,000 people every year will die needing palliative care support. That is 50,000 people who we need to ensure receive the support that they deserve. It is clear that we will have to do more to ensure that people get the care that they need now and in the years to come.

When preparing for the debate, I was pleased to see the wealth of support that Marie Curie provides to my South Scotland constituents. It is worth highlighting some of that important work.

In 2017-18, 4,359 visits were made in the NHS Dumfries and Galloway area to 542 people by the region’s 31 dedicated Marie Curie nurses. The support from those nurses allowed 72.5 per cent of palliative care patients to die in a place that they chose, which I welcome.

Additionally, I am pleased that, in South Scotland, Marie Curie has seven shops that raise funds for the charity. They are located in Ayr, Prestwick, Troon, Lanark, Newton Stewart, Stranraer and Dumfries. There are more than 896 dedicated volunteers, and I thank each and every one of them for their efforts to make the lives of others more comfortable.

I wish Marie Curie every success for this year’s great daffodil appeal, and I thank everyone at the charity for everything that they do to support families around Scotland. The compassion, dignity, care, love and kindness that they bring to everyone they look after, as well as their families, can never be covered by a simple thank you, but I want to be clear about my gratitude and that of this Parliament. Marie Curie provides support to our loved ones towards the end of their lives, and it is our role, as politicians, to support the charity as best we can.

17:33  

I thank Gordon MacDonald, in his absence, for bringing this debate to the chamber. It allows us the opportunity to thank Marie Curie and other organisations that offer palliative care for all the amazing work that they do, and the opportunity to raise awareness of the daffodil appeal.

When I sat in my office last night, wondering about what direction to take with my speech, I happened to glance at the wall on my right, where I have photographs that make me smile—God, do we need to smile in this place sometimes. There is a picture there from the mid-90s of a bunch of reprobates at a warm-weather training camp. Tommy McKean, Elliot Bunney and Mel Neef are in the photo. At the end of the picture is a friend of mine, Dawn Flockhart, who sadly lost her six-year battle with cancer last month at the age of 51. In her last few months, she was cared for in the Marie Curie hospice in Edinburgh.

If you will indulge me for a minute, Presiding Officer, I will tell members what a prestigious international athlete Dawn Flockhart was. She still holds the Scottish under-15 record for 200 metres, and she represented her country at Scottish and British levels. I remember her humour and cheek at warm-weather training camps. She was always at something—playing practical jokes, laughing and being great company. She gave me a hard time about my politics; the Scottish National Party members would have loved her.

Dawn crammed more into her 51 years than most people do into several lifetimes. There is so much that I could tell members about her—from teaching English to foreign students in Italy to learning yoga in India. She even assisted Paul McKenna by teaching him neurolinguistic programming. That just scratches the surface of what she achieved.

Dawn had a way of connecting with people and a desire to help people. She once insisted on working with my middle daughter on her positive mental attitude towards track racing and performance. She has been described as a force of nature and she was all that and more. My thoughts are with her family and I know that they are grateful to those at Marie Curie for the care and comfort that they gave to Dawn and her family in her last few months.

I am sure that we all have a story to tell. The one thing that strikes me is how young Dawn was. When we consider palliative care, we automatically think of those who are later in life. As I have said before in the Parliament, a positive and active lifestyle can stack the cards in our favour, but it cannot make us immune.

The Scottish Government has a vision in which everyone who needs palliative care will have access to it by 2021. However, one in four people is currently missing out on that much-needed care. Whether it is provided in a hospice, hospital or care home, or as support to stay at home, the requirement is that the appropriate care be available in line with the health and social care delivery plan. From the patient’s perspective, and even from an economic perspective, an acute hospital setting is rarely the right environment for end-of-life care.

We are all aware that people are living longer and with more complex conditions—not just cancer and dementia. Therefore, the need for future palliative care requirements to be mapped out in the midst of budgetary constraints is key.

When I read the Marie Curie briefing document, one phrase struck me, because it reminded me of the debate on carers that we had just last week:

“Far too many carers of those at the end of life are not getting the support they need to enable them to carry out their caring roles. More carers need to be identified.”

I am sure that we said the same thing in the chamber last week.

Therefore, although we get involved in arguments about Brexit, budgets and constitutional bun fights, this debate is an opportunity to remind us—through the clutter of politics—that we can change everyday things that affect people’s lives. Let us all commit to making sure that this is one of those things.

17:37  

I thank Gordon MacDonald for securing the debate and Emma Harper for leading it. I say to Brian Whittle that that was a lovely tribute. I also say hello to everyone in the public gallery.

I thank Marie Curie for its detailed briefing for members on activities in our constituencies. Most of all, I thank all those who work with Marie Curie to provide invaluable care and support to individuals and families at often the most challenging of times.

The support that Marie Curie provides is possible only because of the magnificent fundraising efforts of countless volunteers. Each March, the great daffodil appeal helps to raise the awareness and funds that allow Marie Curie to continue to provide fantastic support and care to people all over Scotland.

Recently, I joined local volunteers in Wick who were collecting for the great daffodil appeal. The generosity from the local community was fantastic. I congratulate the volunteers on the £955.72 that they collected. I had a great couple of hours chatting to them, laughing and getting to know them—although, being from a small community, I knew most of them already. That is only one of the active groups in Caithness, Sutherland and Ross that I take this opportunity to thank.

In the Highlands, around 2,575 people die each year from cancer, with 1,930 requiring palliative care. In the past year, the Marie Curie nursing team in the Highlands has seen 189 people over 1,403 visits.

Even with the provision of that impressive level of care, it is estimated that one in four people still misses out on palliative care at the end of their lives. That is why I welcome the Scottish Government’s action in setting out its strategic framework for action in palliative and end-of-life care.

When asked, the vast majority of people say that they would like to be cared for at home or in their community. Specialist and general palliative care services have a proven record in reducing admissions to accident and emergency, and they can prevent unplanned hospital admissions and support appropriate discharge into the community. In 2017-18, nearly 88 per cent of people who died were able to spend their last months of life at home or in a community setting.

Hospices play a critical role in supporting people to achieve their wish to spend their last days at home or in the community. In the NHS Highland area, more than 92 per cent of people achieved their preferred place of death. Without the support of the third sector, it would be impossible for health and social care partnerships to meet those needs and the needs of people living with terminal illness.

Evidence suggests that investing in palliative care services can make efficiencies and savings in the wider health and social care system. The London School of Economics suggests that extending specialist and core palliative care services to people who would benefit from them could result in net savings of more than £4 million.

As we mark the great daffodil appeal this evening, we can celebrate the hard work and commitment of Marie Curie staff and volunteers, but also recognise the significant funding that is required to carry out that work. I endorse what Brian Whittle said about the need for us all to come together. This is the perfect setting for us to do that.

17:41  

I, too, congratulate Gordon MacDonald, in his absence, on securing the debate, and I congratulate Emma Harper on opening it. As every member who has spoken has said, Marie Curie has played a vital role in providing palliative care across Scotland and beyond for many years, and the daffodil has become a widely recognised symbol of the support that the charity provides for people with cancer and other terminal conditions. The daffodil pins that many of us are wearing today are not just a way for Marie Curie to raise much-needed funds for its hospices, homecare nurses and support networks; as Brian Whittle illustrated so well, they are also a way for many people to remember those whom they have lost to cancer and other illnesses, who benefited in their final days from the expert care of Marie Curie nurses.

There is no Marie Curie hospice in Aberdeen, but there are about 50 Marie Curie nurses working in Aberdeen and across the Grampian area to support people with cancer and terminal conditions. They made over 6,000 home visits to more than 1,000 patients in 2017-18. The helper service that is run by Marie Curie, which sees volunteers go into the homes of people who are receiving end-of-life care to provide support and friendship, has recently been reorganised in our area and now covers the whole of the north of Scotland. With nearly 100 volunteers in Grampian alone, the service is particularly valuable to people who are receiving end-of-life care in rural areas and to their families. It supports people who would otherwise find it difficult to access the kind of support that they need.

Marie Curie is one of the longest-running charities that support terminally ill patients, and, in Aberdeen and the north-east, as in many areas of Scotland, it works alongside other national and local charities. The Marie Curie people with whom I deal are keen to emphasise that they are part of a wider family of support for people with cancer. Aberdeen has its own Maggie’s centre, which provides support and advice to cancer patients, while Macmillan Cancer Support has a regular advice session at Aberdeen Citizens Advice Bureau as well as running local support groups. CLAN Cancer Support works to support cancer patients and their families across Grampian and in Orkney and Shetland. Cancer patients from the northern isles often come to Aberdeen royal infirmary for cancer treatment, and CLAN provides accommodation for patients and their families at CLAN Haven as well as counselling and therapy at the purpose-built CLAN House in Aberdeen. The family of support for people who are in such circumstances is therefore very important.

Marie Curie nurses play a key role in providing practical palliative care for patients with terminal cancer and other diseases. Marie Curie relies on the huge good will that it enjoys to raise the funds that are required to provide such services, but it is important for us all—and perhaps especially for the Government—to recognise that, on its own, such fantastic voluntary effort cannot achieve everything. As Emma Harper said, as our population ages, demand for palliative care will only increase, and much of that demand will fall on integration authorities, health boards and local councils, all of which face their own funding challenges—perhaps especially, but not solely, in the north-east. It is therefore vital that the Scottish Government continues to address such issues, supports the effective integration of health and social care, which we have debated on a number of occasions, and provides the support that the whole sector needs to move forward. Inevitably, Marie Curie will see an increase in demand for its specialist nurses and so will need to receive continued support.

I close by paying tribute to all the Marie Curie nurses and volunteers, who do vital work in what can be a very difficult area. I also acknowledge all those—including you, Presiding Officer—who deliver and support the great daffodil appeal every year, which will allow that important work to continue into the future.

17:46  

I thank Gordon MacDonald for securing the debate and allowing us the opportunity to speak about Marie Curie and its annual great daffodil appeal. I also welcome the Marie Curie staff and volunteers who are visiting the Parliament today.

Every year since 1986, the appeal has called on people across the country to donate and to wear daffodil pins during the month of March so that Marie Curie can continue to care for people with terminal illnesses who deserve high-quality, patient-friendly and sympathetic care. Through its invaluable services and support, Marie Curie helps to relieve physical, emotional and financial stress on terminally ill individuals and their families. It allows patients with palliative care needs to retain an element of independence and control by granting them the option to leave hospital and stay in the comfort of their own homes, with the guarantee that they will be cared for by hard-working, compassionate nurses. In Fife, 89.3 per cent of patients who were supported by Marie Curie in 2018 spent the last six months of their lives at home or in community settings, which allowed 97 per cent of them to pass away in their chosen place.

Marie Curie does an excellent job of respecting its patients’ wishes in its provision of social care, which is an integral part of palliative care. In partnership with NHS Fife, it has been commissioned to provide a variety of nursing, emotional and practical home-based support that involves everything from helping patients to manage symptoms and assisting with meals to having weekly chats. Each year, in Fife, approximately 4,190 people die, of whom 3,140—about 75 per cent—have palliative care needs. That is why the great daffodil appeal is of such importance. Last year, in Fife alone, a team of 13 Marie Curie nurses conducted 4,062 visits and saw a total of 338 patients. Along with the nursing team, 153 dedicated volunteers gave their time to support terminally ill patients and their families across the region. The organisation’s befriending service in Fife, which is known as helper, currently supports 27 families, and more volunteers are due to begin their training. Marie Curie’s support in the area is invaluable to the countless members of my community who have been, and continue to be, touched by its services.

In October 2018, I had the pleasure of meeting representatives of Marie Curie and hearing more about the life-changing difference that they make to the lives of those they serve. It is vital that people are made aware of the services that Marie Curie provides and that they take advantage of those services if they are struggling to care for themselves or know someone else who is. No one should have to endure illness or suffering in isolation.

My constituency of Kirkcaldy is proud to be home to a Marie Curie charity shop. Time and time again, since its opening, the shop has been proven to enhance the town. It is run by volunteers, raises awareness of the organisation’s causes, encourages charitable giving and, most important, highlights the impact of Marie Curie in the area. Volunteers are the backbone of Marie Curie and I cannot praise them highly enough. Without them, it would not be able to provide the level of care and support that it does. The Kirkcaldy fundraising group, which has raised £24,310 since its formation in August 2014, has six active members, and they are taking part in this month’s great daffodil appeal collections.

The volunteers deserve our sincerest gratitude and support for all their hard work and dedication. I am fortunate to have had the opportunity to join them on many occasions and to help with their fundraising efforts, and it is an incredible experience to see fellow Fifers of all age groups with big smiles on their faces, tins in hand, encouraging and inspiring others to do good in the community. I have seen at first hand how proud and happy the volunteers are to lend a hand and be part of such a worthy cause. Volunteering allows people to give back to the community; it is truly a satisfying and humbling experience, which is why I am very much looking forward to offering my help to my local fundraising team once again for this year’s appeal and to joining them down on Kirkcaldy High Street.

I wish Marie Curie and all its volunteers across Scotland all the best with the great daffodil appeal in 2019. I and my staff will be wearing the bright yellow daffodil to raise awareness and make a difference, and I encourage everyone else to do the same.

17:51  

I, too, echo members’ thanks to Gordon MacDonald for securing a debate on this important issue. We cover many topics in the chamber, but the debates on end-of-life care are some of the most poignant and profound that we have, and I feel very privileged to speak in the debate this evening. Listening to the other speeches, I have also been reflecting on the fact that the experience of members across the country is very similar to mine with regard to the work that Marie Curie does in giving comfort and showing compassion to people in their last, sometimes very difficult, hours of life.

All told, there are only 23 Marie Curie nurses in the Lothian region, but their reach extends far beyond that. They give more than palliative care; they give compassion and love not just to those in their final hours but to those around them who loved them, and that speaks volumes about the character of the people who choose that life and profession. Not everyone can be a Marie Curie nurse.

In the time that is available, I will reflect on two events that have happened to me since I spoke in last year’s debate on the subject. The first was a visit that was organised by Marie Curie to its Frogston hospice in Edinburgh, where many of my constituents will spend their last days. The place was familiar to me because my wife’s grandmother died there in 2002, and I said so to the receptionist when I arrived. She asked, “What was your gran’s name?” When I said, “It was Bridie, but she was here in 2002,” she said, “Oh, you mean Bridie Douglas?” Sixteen years later, the receptionist still remembered my wife’s grandmother with fondness, and I was really struck by that sense of human interest and the desire to get to know the people in their care, see the human being and know their life story.

The second event happened at exactly this time last year. My wife’s father was taken into hospital with what was suspected to be a simple bladder inflection—he had profound multiple sclerosis, so he was prone to such infections—but it quickly became apparent that he had advanced liver cancer and that he had only weeks, if not days, to live. The battle was to get him home. Like many families, we really struggled to make sure that an adequate social care package was in place to underpin his being able to spend his last days at home, which was where he definitely wanted to be. Marie Curie was vital to achieving that—indeed, we could not have done it without the help of the nurses. In those last six days, from his discharge from hospital to when he sadly passed away, we were able to build a bubble of love, light and happiness around him in his family home with the support of the Marie Curie nurses.

The nurses offered so much more than I ever expected. I had never seen them in operation as I did at Rob’s bedside. They taught me to massage moisturiser into his arms, because, like most people who are coming towards the end, he was very dehydrated. It was one of the most intimate experiences that I had ever had with my father-in-law—I did it while I was talking to him and so on. The nurses also taught me how to rehydrate him by putting water to his mouth.

The nurses’ care stretched beyond Rob’s final hours. That was brought home to me when, a week after his funeral, a Marie Curie nurse appeared at the door with a bunch of flowers and a mobile number. That offer of continuing pastoral care is one that we have leaned into from time to time. Put simply, they made what could have been a tragic and very sad experience one that we reflect on with fondness and love, and I thank them for that. I also thank everyone who is in the chamber to support them, and I am grateful for having had the opportunity to debate the subject in Parliament today.

17:54  

I sincerely thank my good friend Gordon MacDonald for securing the debate, and Emma Harper for leading it so effectively. I welcome those who are in the public gallery to support the work that Marie Curie does. It has been interesting to hear about the experiences of other members and about their contributions to Marie Curie and some of the challenges that they have faced in their lives.

Incidentally, I joined Gordon MacDonald last week for a photo shoot that he organised, for which I thank him. I also thank him for giving me the opportunity to wear one of those splendid yellow Marie Curie top hats—I have already had some mickey taken out of me in my constituency because of the photographs that appeared in the Stirling Observer.

What I really want to do is to thank Marie Curie for the incredible work that it does in providing end-of-life care for people in my constituency and to recognise the role of the organisation’s many volunteers. I believe that, almost two years ago, I was one of the first MSPs—if not the first—to host a Marie Curie blooming great tea party fundraiser. I held the event in my constituency office in STEP, the Stirling enterprise park, and it was well attended, mostly by employees from the many offices in the surrounding complex. Who doesn’t love a good cup of tea, a slice of cake and a good blether? Why am I telling this story? The reason is that I was struck by the fact that, invariably, the conversation among those who attended the tea party turned to what Marie Curie meant to them, and I will come on to that a bit later.

First, I want to say that the Marie Curie shop in Stirling city centre is incredibly well run by a dedicated team of local volunteers. Recently, I had the chance to drop in as part of Stirling’s bid to become Europe’s volunteering capital and to speak to Morag, the shop manager, about how important the place is to local people. It is a place where people pop in not only for a wee bargain but to have a chat with the volunteers. As members might imagine, those volunteers, along with having those blethers, do a great job of raising funds on behalf of Marie Curie.

Most recently, I caught up with local Marie Curie activists Freida and Jim in Stirling’s Morrisons store on Friday. Jim, who is the area manager, told me about his varied role in the organisation. Freida is a local volunteer who is originally from Bannockburn and who has worked in hospitals for a number of years. She told me how important Marie Curie’s service has been to her. The two were handing out the daffodil pins that all members are wearing this evening. It was remarkable—humbling, actually—to see so many people give so generously to the bucket.

The work of Marie Curie means so much to every one of us in the Parliament and to many in our constituencies across the country. As has been said, most of us will have known someone who went through an end-of-life experience. It is not just the patient who experiences that difficult situation but the family and close loved ones. The help and advice that the Marie Curie staff provide are an invaluable lifeline to many people. The nurses provide free one-to-one nursing to those with terminal illnesses, which can be overnight or even at very short notice in a crisis. Just knowing that the service is available brings comfort to people who are going through that difficult time. No matter how bad things get, help is there.

I have witnessed at first hand just how much the care that Marie Curie nurses provides means to people. I will quickly tell the story that I mentioned earlier. One Marie Curie nurse visited my office to let me know about their work locally and, by sheer coincidence, that nurse had been an end-of-life carer for the mother of one of my staff members. The reunion between those two people, who had been through a lot together, was as deeply emotional as it was joyful. I could see on their faces just how much that joint experience had meant to them. That was a very moving moment that I will never forget.

Marie Curie is a vital crutch to those who are going through what is perhaps the most difficult event that life invariably throws at us. Thank goodness that that organisation exists. Without it, people in such situations and their families would have a much more difficult time. I am sorry that I cannot be at the reception this evening to celebrate the work of Marie Curie and the blooming great tea party.

There are three members still to speak, plus the minister, and we are running out of time. I am therefore minded to accept a motion without notice, under rule 8.14.3, to extend the debate by up to 30 minutes. I invite Emma Harper to move the motion.

Motion moved,

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

Motion agreed to.

I remind members who might be concerned about this that parliamentary receptions are not allowed to begin until business in the chamber is finished.

I call Edward Mountain, who will be followed by Maureen Watt.

18:00  

Thank you, Presiding Officer. I had just calculated that I could speak for 10 minutes, but then you commented that I am standing between people and their reception. I will be mindful of the time.

I thank Gordon MacDonald for securing the debate and Emma Harper for opening it.

When I met Marie Curie representatives in December, I was inspired by the care and support that they offer to patients across the Highlands. The help that the charity provides is vital. Last year, Marie Curie made 1,403 visits to terminally ill people at home across the region, supporting 92 per cent of those people to die in the place of their choice.

Let us not forget—I do not forget—that none of that would be possible without the huge energy that goes into fundraising efforts. I take this opportunity to pay tribute to the 14 local fundraising groups in the Highlands who raised more than £170,000 in 2017-18. The money will go a long way to supporting loved ones across the Highlands.

I want to thank Gordon MacDonald for reminding the Parliament, in the motion, that Scotland still has a way to go in ensuring that everyone with a terminal illness receives the care that they need. As we heard, one in four people misses out on the palliative care that they need at the end of their life. We need to do better, and I am delighted that the Government is stepping forward to try to ensure that, by 2021, everyone gets the palliative care that they need. I urge the minister to be bold and achieve that before 2021. The clock is ticking for all of us as Scotland’s ageing population rises and the demand for palliative care increases.

The issue unites the Parliament, as we heard. Many of us have lost a family member or friend to a terminal illness. I can say from personal experience that, without palliative care, our loved ones cannot make a choice about where they want to be in their final moments. Dying with dignity is the mark of a civilised society, and I strongly believe that everyone must have the right to die in the location of their choosing, which might be at home.

That is why Marie Curie is so important, and that is why I wear the daffodil every year, so that people know that we are supporting them in their wish. I admit, however, that on Saturday I will take the daffodil off, because I am going to a rugby match and I am not sure that I want to be seen wearing a daffodil on Saturday. At every other time of the day and week, I am very happy to wear and support it—I can see that that has not gone down well, but from a rugby point of view I just think that I will not wear it on Saturday.

I urge everyone to wear the daffodil, to join the great daffodil appeal this March and to take the time to thank all those people from Marie Curie who are helping our friends and families in their last days.

Maureen Watt is not going to speak; we appear to have had a wee problem with her button. However, let me tell everyone that she looks very fetching in that yellow top hat. [Laughter.]

18:03  

Thank you, Presiding Officer. I am happy to step in as a substitute for Maureen Watt, and I thank Gordon MacDonald for securing the debate and Emma Harper for stepping into the breach and leading the debate, thereby taking on the mantle that you have so ably carried in recent years.

Debates in this place always benefit when members are able to draw on personal experience, and we had powerful examples of that from Brian Whittle and my colleague Alex Cole-Hamilton.

I pay tribute to the phenomenal work that is done by Marie Curie nurses, staff and volunteers on behalf of people with a terminal illness and their families. We should never fall into the trap of being complacent about that work, and I am confident that we will not do so.

We also need to bear it in mind, as the motion reminds us, that thousands of people across Scotland who need palliative care are still missing out. Given the ageing population and that annual death rates are on the rise, the numbers who are unable to access the end-of-life care that they need will inevitably increase unless steps are taken to address the problem.

I very much welcome the Government’s action plan for palliative and end-of-life care. As others have reminded us, it commits to ensuring that, by 2021, everyone who needs palliative care will get it. However, for that to happen, the issue will need to be given greater priority by health and social care partnerships, and there will need to be resourcing from Government.

To meet that target, we will also need to address discrepancies and inequalities in access. Emma Harper was absolutely right to say that there are disparities in care for those who are over 85, those who live alone, ethnic minorities and those who live in deprivation. There are also disparities between those who suffer from cancer as opposed to those with other terminal conditions such as dementia, motor neurone disease and heart failure, who seem to be overrepresented among those who are not getting access to care.

I acknowledge the efforts of those who are responsible for delivering the service in my constituency in Orkney. As I have said previously, the service is relatively new in the islands, but it has already shown its worth and value. Feedback from those who have benefited from the service remains incredibly positive. Inevitably, as a result, demand is likely to continue to grow—more so, I suspect, than the two nurses who are operating in Orkney will be able to support.

Therefore, I hope and expect that every effort will be made to enable that demand to be met through close work with general practices and other relevant local services, which reflects the essential partnership between public and voluntary sectors. There certainly appears to be strong support in the Orkney community, which was reflected in the response to the fundraising heroics of Linda Lennie and her team of local volunteers. I am delighted that Linda is in the chamber again to witness the debate and attend tonight’s reception.

I congratulate Gordon MacDonald on enabling the debate to take place. I wish everyone who is involved in the great daffodil appeal every success this year. To all the Marie Curie nurses, staff and volunteers, I offer my sincere thanks for the exceptional work that they do in allowing people to die with dignity in a place of their choice.

18:07  

I add my congratulations to Gordon MacDonald on securing tonight’s debate, and to Emma Harper on stepping into the breach and leading the debate. I also thank members from across the chamber for what has been an excellent debate with some powerful speeches. I particularly thank Alex Cole-Hamilton and Brian Whittle for their touching speeches, which put the importance of Marie Curie in context.

The fact that the great daffodil appeal is still going strong after more than three decades is a fantastic achievement, of which Marie Curie’s staff and volunteers should be rightly proud. From hearing members across the chamber, I know that we all agree that the fantastic work that Marie Curie does in Scotland is invaluable. It fulfils a vital role in supporting those who are nearing the end of their lives and in sustaining a multitude of families and friends around them.

Since my appointment as part of the health team, I have been immensely impressed by the range and breadth of support that Marie Curie offers. It was good to hear members give examples of that support from across Scotland, and there are a number of great examples from my constituency in Dundee. Those examples show that Marie Curie provides a much broader range of support than people might traditionally expect of the organisation. The skills, compassion and care that are provided are more important than ever, as the demand for such services is set to increase due to the well-understood changes in our population, which Lewis Macdonald mentioned.

We all want a fairer, healthier Scotland and the Marie Curie great daffodil appeal presents a timely opportunity for us to reflect on the challenges that we face to meet those specific needs and an opportunity to set out the concrete steps that we are taking to address them.

Scotland is already a world leader in the field of palliative and end-of-life care, and I am proud of the progress that we have made in the past few years in increasing the numbers of specialist staff, improving access to services and, through our programme of health and social care integration, putting services under the control of our local communities.

However, there is more to do. The Scottish Government is committed to working with organisations such as Marie Curie to take forward our shared aim of ensuring that everyone in Scotland who would benefit from palliative and end-of-life care has access to it by 2021. That is an ambitious goal, but we feel that it is within reach.

In December 2015, we published our strategic framework for action on palliative and end-of-life care, which sets out commitments that are designed to improve the quality and availability of palliative and end-of-life care in Scotland. However, to achieve that vision, it is essential that we create the right conditions nationally to support local communities in their planning and delivery of palliative and end-of-life care services to ensure that the needs of each individual are met. That ethos is at the heart of health and social care integration. Integration authorities work with local communities and build on the expertise of organisations such as Marie Curie to commission services that are truly designed to meet the palliative and end-of-life care needs of their local community. Commissioning services in that way will drive improvements through meaningful, collaborative partnerships with the palliative and end-of-life care community.

Key to the success of that work is the power of integration authorities to drive real change. They will manage almost £9 billion of resources that were previously managed separately by NHS boards and local authorities. This year, that includes more than £550 million of health investment to support integration and social care, which will increase to exceed £700 million in 2019-20. We have asked Healthcare Improvement Scotland to work with integration authorities to test and implement improvements in access to and delivery of palliative and end-of-life care. Data is vital; without it, we do not know whether people are indeed getting the palliative and end-of-life care that they need, local communities cannot commission the services that are needed to support people’s care and care plans will remain hard to share.

That data challenge is recognised in our strategic framework for action, which contains a commitment to support improvements in the collection, analysis, interpretation and dissemination of data and evidence relating to the needs, provision, activity, indicators and outcomes in respect of palliative and end-of-life care. A working group is tasked with clarifying the data requirements to ensure that they are valuable for individuals who are receiving care and for integration authorities in the planning, commissioning and improving of local services. Working with the NHS Information Services Division, the data group is investigating areas in which data collection and use can be improved.

I turn now to the values and skills that people need from our health and social care staff. It is difficult to discuss death and dying, and to do that well requires a great deal of personal resilience and compassion. Developing the skills to have those difficult conversations is critical for having timely and helpful anticipatory care planning conversations. Having those conversations, and sharing what matters to a person at the end of their life, can make all the difference to how and where they die and the care that they receive. Enabling people to be with those who are most appropriate as they approach death is not a simple skill; it calls not just on people’s technical skills but on their values, life experience and compassion. Locally focused community work, such as that of Compassionate Inverclyde, embodies the ethos of whole communities that come together to support one another with compassion at points of grief, loss and change.

Finally, I will say a bit about palliative and end-of-life care research. Over the past few years, the Scottish Government has provided funding to our well-established palliative care research forum to support Marie Curie and academic colleagues to undertake work to help us to develop a clearer picture of research and data gaps and to support improvement in identifying people who might benefit from palliative approaches and the co-ordination of their care. That will be helpful in realising our shared vision for palliative care in Scotland.

Through our combined efforts and continued productive collaboration, I am optimistic that work towards our shared goals will bring about further innovation and transformative change in palliative and end-of-life care. I look forward to continuing to work with Marie Curie on that shared aim for many years to come. I also look forward to joining other members in the garden lobby for the Marie Curie reception that will take place immediately after this debate, which is a further opportunity for us all to thank Marie Curie and its staff, nurses and volunteers for the amazing work that they do for us all.

That concludes the debate. I add my personal thanks to all the Marie Curie volunteers who are in the public gallery tonight and my apologies that I am unable to come to the reception.

Meeting closed at 18:16.