Meeting of the Parliament

Meeting date: Wednesday, March 8, 2017

Official Report 880KB pdf

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Marie Curie Great Daffodil Appeal

The next item of business is a members’ business debate on motion S5M-03214, in the name of Linda Fabiani, on Marie Curie’s great daffodil appeal. The debate will be concluded without any question being put.

Motion debated,

That the Parliament welcomes Marie Curie’s Great Daffodil Appeal, which is now in its 31st year and runs throughout March 2017; understands that Marie Curie provides care and support for over 8,000 people and their families every year in Scotland in their own homes, in 31 local authorities and in Marie Curie hospices in Edinburgh and Glasgow; highlights the vital contribution that volunteers make to provide this care; acknowledges that in 2015-16, 1,863 people across Scotland volunteered for Marie Curie in their community fundraising groups, the Helper service, shops and offices; recognises the dedication and hard work of fundraising volunteers that means the annual Great Daffodil Appeal has so far raised over £80 million pounds since 1986 to enable and support the work of the charity; applauds what it sees as the substantial contribution made by over 80 local Marie Curie fundraising groups to the Great Daffodil Appeal every year to support Marie Curie services across Scotland; further recognises that trained volunteers from the Marie Curie Helper service, currently available in Dumfries and Galloway, Fife, Lothian, Grampian and Argyll and Bute, provide one-to-one emotional support, companionship and information for people living with a terminal illness and their families; considers that terminal illness can be a lonely and isolating experience and that the Helper service can help tackle social isolation, loneliness and associated mental health issues; recognises the role of volunteers in Marie Curie’s 37 shops in Scotland who it considers provide excellent customer service and are involved in a wide range of activities to support the running of each shop; acknowledges that volunteering or joining a fundraising group can be very rewarding and every volunteer’s gift of time and skills helps Marie Curie to make a real difference to the lives of people living with a terminal illness, and their families, as well as raising vital local funds; applauds the work of staff and volunteers across Marie Curie who work toward its vision of a better life for people and their families living with a terminal illness, and notes calls to encourage as many people as possible to support the campaign.

17:08  

I am delighted to host yet again what has become an annual debate about the fantastic work that Marie Curie carries out. The debate is focused generally on the great daffodil appeal. This is the 31st year of the appeal, and in that time more than £80 million has been raised.

I thank all my colleagues who are here and all those who signed the motion. I do not think that there is anyone in the Parliament who does not recognise, personally and professionally, the importance of the care and support that the Marie Curie organisation gives to more than 8,000 people and their families every year in Scotland in their own homes.

That point is important. The debate that we had a couple of years ago in the middle of the daffodil appeal was about the right of people to choose where they receive their palliative care. That was very much led by Marie Curie and other agencies. I believe that that has led to a much wider discussion of palliative care and to a commitment from the Parliament and the Government to look at proper palliative care strategies.

My colleagues will cover a lot of that, so I will use my time to celebrate the work of the Marie Curie volunteers. Across Scotland, there are more than 1,850 volunteers, as well as 80 groups, the helper service and 37 shops. A lot of volunteers are in the public gallery today, we have a host of beautiful golden daffodils around our Parliament and a couple of guys are here, too. It is okay for me to say that because it is international women’s day and we are celebrating women. Indeed, it is a fine day to celebrate Marie Curie’s volunteers.

The Marie Curie charity gives much support to those who have a terminal illness and to those who support people who have a terminal illness. People do not realise the range of work that Marie Curie professionals and volunteers are involved in. They deal with issues that affect people who end up in difficult situations in their lives—with the practical, day-to-day matters that must be addressed to give comfort, ease of mind and as much of a sense of wellbeing as can be given at such a difficult time.

I have jotted down a couple of aspects and, as I have said, my colleagues will no doubt cover some of them. Social security is a major issue for those who face having to leave work or taking a drop in income at a time of terminal illness. Marie Curie and other charities have been working hard on that policy area and feeding into our Government’s consultation on social security. I strongly believe in the Scottish Government’s approach—I think that it has been generally welcomed across the Parliament—that the system that we are responsible for should have dignity, fairness and respect at its heart. A lot of that work has been informed by organisations such as Marie Curie putting forward their views.

I know that my colleague George Adam intends to talk a bit more about social security, because I overheard him talking to someone else about the issue when we were getting a drink of water. I will therefore not labour the topic, because that will be his theme.

Mental health is another issue. A new mental health strategy is in development, and I know that Marie Curie has given evidence and spoken to people about that. I cannot begin to imagine the absolute strain on a person’s mental health and wellbeing from providing protracted palliative care for someone who they love very much. I have experienced an element of that with family over the years, but not to the depth that must come when the person who is affected is a lifelong partner, a child or a parent to whom someone has been very close. I certainly cannot begin to imagine how difficult it must be to be the person who is told that they have a terminal illness.

Marie Curie’s promotion of mental health and wellbeing is extremely important for many people. I hope that other members will talk more about that; I certainly want to talk more about the issue with Marie Curie.

Marie Curie helps in those areas and in others, too. I do not have the time to go into its work on health and social care joint integration boards and the information that it has been providing in that regard. Its work on the need for quick assessments and on the right to a fast track to finance to help to make the journey as stress free as possible for people is hugely important.

Marie Curie produces a lot of information. Its stall in Parliament this week includes fascinating books—they are more than just leaflets—about how people can cope and about the practicalities that help people to cope with a terminal illness. That is great work.

The professional staff are great and the helpline is great, but the volunteers do absolutely fantastic work. I do not have time to go into the helper service at any great length. I know that Elaine Jorgensen, who will be one of the speakers at tonight’s reception, will tell us about the fantastic work that the service does. At the moment, it does that work only in some areas of Scotland, but I hope that it will be expanded.

The helper service goes way beyond anything that volunteers have previously done. It is on the way to matching the service that is provided by many in a professional capacity. The volunteers concerned choose—I imagine that most do so because of personal experience—to give up their own time to help people. Often they do not know those people; all that they know is that those people need a helping hand. We are very lucky if we can go through life and never need a helping hand.

I again welcome our Marie Curie volunteers—we are delighted to host you in your Parliament. We can talk more at the reception. They should wear their daffodils with pride every year, because they deserve to. [Applause.]

I, too, welcome the many people who are in the public gallery. I politely ask them to refrain from applauding; I understand why they want to, but it is not permitted in the Scottish Parliament.

Eleven members would like to speak in the debate. Because of that, I am minded to accept a motion under rule 8.14.3 of standing orders to extend the debate by 30 minutes. I invite Ms Fabiani to move the motion.

I have always wanted to do this, Presiding Officer.

I move,

That, under Rule 8.14.3, the debate be extended by up to 30 minutes.

Motion agreed to.

17:16  

I thank Linda Fabiani for securing this important debate.

Marie Curie nurses give people with a terminal illness choice and dignity. To put it simply, Marie Curie is a fantastic charity that makes it possible for people who are faced with a terminal illness to have the choice to die peacefully, in their own homes, surrounded by the people they love. We simply cannot put a price on the work that Marie Curie nurses do, as Linda Fabiani outlined.

Currently in the United Kingdom, there are nearly 2,200 Marie Curie nurses caring for people with terminal illnesses in their own homes. None of us knows whether or when we will need the support of Marie Curie nurses, but we should all be eternally grateful that, if we do, they will be there.

The great daffodil appeal is Marie Curie’s biggest annual fundraising campaign. From wearing a daffodil pin to organising large gala dinners or small bake sales, there are countless ways for people to get involved. There are Marie Curie fundraising groups in my constituency in Bishopbriggs, Kirkintilloch, Lenzie and Bearsden that are doing great work, and they are just some of the 85 groups in Scotland that have raised more than £4 million.

The Marie Curie Memorial Foundation was established in 1948, and the first Marie Curie home for cancer patients opened in 1952 in Cupar, Fife. Today, nine hospices across the UK offer round-the-clock care and support in a welcoming environment for the people who stay there and those who come in for day care. Marie Curie is the largest provider of hospice beds outside the national health service. The funds that the great daffodil appeal generates ensure that that role can continue and develop. Marie Curie is also one of the UK’s leading funders of palliative care research.

Each year, 11,000 people in Scotland who need palliative care are not accessing it—in other words, one in four of the people who need palliative care are missing out. That is why I welcome the Scottish Government’s “Strategic Framework for Action on Palliative and End of Life Care 2016-2021”, which sets out the vision that everyone who needs palliative care should have access to it by 2021. The Government has also committed to doubling the number of palliative care services in the community through its recently published “Health and Social Care Delivery Plan”.

On international women’s day, it seems fitting that we remember the remarkable woman who made all this possible. Marie Curie was born into a poor family in Poland in 1867 as one of five children. She had an insatiable appetite for learning and, through sheer determination, she entered university at the Sorbonne in Paris, where she read physics and mathematics. Her discovery of radium and polonium, for which she and her husband, Pierre Curie, won the Nobel prize for physics, has saved millions of lives throughout the world. She was the first woman to win a Nobel prize, the first person to win one twice and the only person to win one for two different sciences. What a legacy to leave to the world.

With our increasingly ageing population, we must ensure that our terminally ill are treated with respect and dignity and can die peacefully where they choose. I therefore urge everyone to get involved in the great daffodil appeal in any way they can, because every daffodil counts. As the great Marie Curie herself said,

“One never notices what has been done; one can only see what remains to be done.”

I remind members that speeches must be of four minutes.

17:20  

I thank and commend Linda Fabiani for lodging the motion and giving all parliamentarians the opportunity not only to highlight Marie Curie’s excellent work but to talk about the importance of the great daffodil appeal and the various people it helps.

I also pay tribute to everyone who works or volunteers for Marie Curie. They have helped this campaign, which has been run for 31 years and counting, to raise, as the motion states, more than £80 million since 1986. That is a remarkable achievement and testament to the dedication of those involved in this charity and the vital work that it carries out to support people with terminal illness.

I find it poignant that we are having this debate on international women’s day, given that Marie Curie herself was truly an international woman of great stature. She was indomitable. As Rona Mackay has noted, she was a woman of many firsts: the first to develop her theories; the first woman to become a professor at the University of Paris; and most notably, the first woman to win a Nobel prize. Indeed, she did so twice in her life.

Of course, Marie Curie’s legacy has continued through the work of the Marie Curie charity, which was set up in 1948. As the motion notes, Marie Curie provides expert support to around 8,000 people and their families every year in Scotland and operates across all bar one local authority. However, around 11,000 people with a terminal condition will not, for a variety of reasons, receive any end-of-life support; one of the main reasons is, as Marie Curie highlights, the planning of social care. As we know, delayed discharge is an on-going concern in Scotland’s hospitals and although I am not seeking to make an overtly political point in such a debate, we must note that it is incredibly distressing for those with a terminal condition not to be supported through their end-of-life journey either in their community or in their own home—if that is their choice—and, indeed, to be prevented from doing so.

As the Marie Curie report “Dying to care: A report into social care at the end of life” acknowledges, communication between the national health service and social care services through health and social care partnerships needs to be better in this new world of integration. In my Highlands and Islands region, Marie Curie carries out work that is vital in supporting the NHS and, importantly, allowing its recipients to remain at home while receiving care. At this point, I particularly welcome representatives from fundraising groups from Orkney, Moray, Thurso and the Isle of Bute, who are in the gallery today, and the many nursing staff from my region, some of whom are also here.

In the Highlands and Islands , around 8,800 people die each year from a terminal condition; moreover, 6,500 have a palliative care need, and it is deeply worrying that around a quarter of Scots with such a need will not receive access to that care. As a party, we are supportive of the general aims of the strategic framework that has already been mentioned, but although such measures should be achievable in urban Scotland, the greater challenge will be achieving them in rural and remote Scotland, where, as we know, specialist care services are limited and often difficult to access.

I also commend the helper service, which, thanks to £320,000 from the Big Lottery Fund and investment from Marie Curie, was launched in the Highlands and Islands last year and covers Argyll and Bute. The new helper service manager, Alison Craig from Argyll and Bute, is here today, too, and I take this chance to wish her luck in her new job. The service is a vital lifeline for many people, providing companionship and emotional support as well as practical help for those struggling to get by with their respective conditions.

Finally, very few charity campaigns have such a high profile or such a recognisable public image as the great daffodil appeal. Rather like world AIDS day, with its red ribbon, the yellow daffodil is a powerful emblem of what is a fantastic, long-running campaign, and I am sure that we all wish it every luck in the future.

17:24  

As Linda Fabiani has pointed out, this is one of the many debates that we have every year in Parliament. It is one that I always look forward to and enjoy taking part in for a number of reasons, and I thank Linda Fabiani for bringing it to the chamber again.

One reason is that I feel a personal closeness to the charity. That is because of the fundraisers, such as the people from my Paisley constituency who are here tonight. They do a power of work in fundraising and have raised over £100,000 for Marie Curie over five years. This is always a big day for them, of course, as members would be able to tell by looking at their social media feeds today—there is nothing wrong with having a wee bottle of prosecco on a journey over to Edinburgh; that is a case of team Paisley on tour.

The fundraisers deserve the day out because of all the work and the fundraising that they have done for Marie Curie. This is one of the days on which they get the opportunity to have a day out. Jayne Cumming, Julie McGuire and Lynn Wilson are attending the debate. They make Marie Curie very real for me. I think that, if a person is going to work for a group or with an organisation, they have to feel part of it. Those people make Marie Curie very real because of their personal stories and their hard work.

Over the past three years, I have walked in fire. I know that many think that I can walk on water, but this was fire. Last year, we managed to raise £20,000 at the event that was based at the Paisley 2021 stadium—I was going to say St Mirren park—and we had a very good night. That is always a great event, because there are always many positive people at it. Some of them are probably brought together by something negative that has happened in their life. People get a lot of strength and support from that.

I have another, very personal reason for feeling a closeness to the charity. I am going to talk about palliative care. My mother had cancer, and she ended up in the Accord hospice in Paisley. When we were going through the process, the hospital said to me that she had missed a window of opportunity to go and get palliative care and that she might end up dying in the hospital. My answer was not, “Do you know who I am? I’m going to make sure she goes to the hospice.” It was, “I’m going to physically pick my mother up and take her to the Accord hospice if I have to carry her all the way myself.”

We talk about individuals’ very personal stories. Marie Curie tells us that, every year in Scotland, 11,000 people who need palliative care are not getting access to it. It is good news that the Scottish Government’s strategic framework on palliative and end-of-life care promises that everyone who needs palliative care will get access to it by 2021, because we have to ensure that we look after those people. It is a very difficult and extremely emotional time in a person’s life, and not getting access to such care is the last thing they need. I saw the difference that it made to my mother to have her last hours and days in a hospice. I will try not to greet halfway through this debate.

As a member of the Social Security Committee, I am interested in what Marie Curie and other charities have to say about personal independence payments and Department for Work and Pensions assessments. The process is too long for people who have a terminal illness. We constantly hear stories about people who have died before they have been assessed. I am glad that that benefit is one of the 15 per cent of benefits that will come to the Scottish Government. I know that the Minister for Social Security is already on record as saying that the Government will address that matter and ensure that it is dealt with. When a person is at such a stage with a family and they need time to ensure that everything is okay, the last thing that they want to worry about is going through that uncaring process.

I want everybody to have a great night. The volunteers deserve that. This is their night, and they can have as much prosecco as they want to. They deserve that for the work that they have done. I hope that everyone enjoys themselves, but I will not be able to spend any time with the volunteers tonight, unfortunately, as I have other constituency business. I wish them all the very best for the future.

17:28  

I refer members to the register of members’ interests, which states that I was employed by Parkinson’s UK when I was elected to Parliament, although that employment has ceased.

I echo the comments of other members in thanking Linda Fabiani, who is, I know, a long-standing supporter of Marie Curie, for securing the debate. As she and others have commented, Marie Curie’s fantastic work makes a difference in all our communities at a deeply difficult and emotional time for families. In my South Scotland region, around 1,000 people are supported by that work—for example, by the compassionate care that many receive from the dozens of wonderful Marie Curie nurses in the region.

Much of that work is possible only because of the annual great daffodil appeal, which has been raising both funds and awareness for over 30 years. However, it is also because of a group of people that Linda Fabiani rightly paid particular tribute to: the army of volunteers who support Marie Curie, whether through fundraising or helping in one of the Marie Curie shops or with the more recently established Marie Curie helper service.

Prior to being elected to Parliament, I had the privilege of working for Parkinson’s UK in supporting and co-ordinating the volunteers, and I saw at first hand the difference that they made to people living with Parkinson’s. It is the same with Marie Curie’s helper service volunteers, including the 20 in Dumfries and Galloway, some of whom are in the public gallery this evening—I will refrain from speculating whether they had prosecco on the train on the way here. However, whether it is providing a friendly ear for someone living with a terminal illness or allowing families and carers to take a few hours’ break while the volunteer provides care, the work of those helper service volunteers and, indeed, all Marie Curie’s volunteers is simply invaluable. I am sure that I speak on behalf of the whole chamber in simply saying thank you to those volunteers.

As well as paying tribute to the work of Marie Curie, particularly its volunteers, the debate is a chance to discuss issues to do with end-of-life and palliative care. It is over a year since the Health and Sport Committee published its thorough and far-reaching report “We need to talk about palliative care”, which was followed by the publication of the Scottish Government’s “Strategic Framework for Action on Palliative and End of Life Care”, with its vision of everyone in Scotland who needs such care having access to it by 2021. There will not be a member in the chamber who does not share that vision, but we all know that more still needs to be done over the next five years to turn it into a reality.

I had the privilege of holding my first members’ business debate in the chamber recently on Marie Curie’s excellent report “Enough for everyone: Challenging inequities in palliative care”, which highlighted that one in four people who die in Scotland misses out on vital palliative care. As Rona Mackay, Donald Cameron and George Adam said, that amounts to 11,000 people a year in Scotland. Although this is not an exhaustive list, the report also showed that those aged over 85, those from black, Asian and minority ethnic communities, those who live alone and those who live in areas of deprivation were those least likely to receive palliative care. If we are to meet the 2021 vision, we need to break down the barriers to care for those groups. The report highlighted a number of recommendations and common themes that can help us to do just that, so I will focus on them in my final minute or so.

First, there is a need for more research and data. I am proud of the fact that the University of Glasgow’s end-of-life studies group is based at the Crichton campus in my home town of Dumfries. The group was founded in 2014 by the eminent sociologist, Professor David Clark, who many members will know as the author of the Health and Sport Committee’s report on palliative care. The group has done far-reaching research work, but a lot more needs to be done to tackle the gap in research and data on palliative care, in contrast with the position for other health issues, not least the lack of an evidence base for the Government to show progress towards the 2021 vision.

There is also a need to improve the indicators that are used by health and social care partnerships to ensure that we fully measure the inequities in care that I mentioned earlier. Although it was encouraging to read of the Government’s commitment in the recently published health and social care delivery plan to double palliative and end-of-life provision in the community, I hope that the minister will be able to say something in her summing up about how that will be achieved.

Finally, talking about palliative care and dying does not come naturally to many, despite the inevitability of death, so I hope that the minister will also say more this evening about how the Government intends to deliver the commitment in the framework to support greater public discussion on death, dying and care at the end of life. As Professor David Clark rightfully concluded—

I am afraid that you must close.

I have a final comment, Presiding Officer.

It must be a final final comment.

Professor Clark rightly said that our palliative care in the UK and Scotland is “world class”, but we need to ensure that that world-class care is there for everyone who needs it.

17:33  

Marie Curie undertakes highly important work in my constituency and across Scotland, offering expert care, guidance and support to those living with a terminal illness to help them get the most from the time they have left. There is no doubt that Marie Curie’s staff do a tremendous job, and I thank my friend Linda Fabiani for bringing the debate to the chamber so that we can acknowledge that.

Carrying out that work has a substantial cost, though, so I will use my speech to acknowledge the very considerable fundraising efforts made by Angus South residents to aid the Marie Curie cause. The local Marie Curie group in Carnoustie alone has raised £25,000 for the charity over the past two years, which has seen mountains climbed, cans shaken, tablet and cakes made, miles run and people abseiling off the University of Dundee’s Tower building, all in order to help this fantastic cause.

Did you do that?

I do not think so.

Additionally, four doctors and two receptionists from Carnoustie Medical Group’s Parkview primary care centre raised £3,026 for Marie Curie last May by running distances of 5km and 10km at Monikie country park.

On the other side of my constituency, in the Sidlaws, we find someone else who has certainly gone the distance, and more, for Marie Curie. Last year, Judith Strachan, along with some friends, undertook a sponsored trek in Peru, through the harsh and diverse Andean mountains, to reach the 15th century Inca citadel of Machu Picchu. All told, the four ladies involved raised £16,000—enough to provide 800 hours’ worth of free high-quality care.

Even that effort has been surpassed by Petra McMillan, who is a Marie Curie patron for Dundee and Angus and who was a constituent of mine until very recently. All told, since 2009, Petra, her family and friends, and others in the DD postcode, via the Carnoustie and Dundee fundraising groups, have raised a quarter of a million pounds for Marie Curie. Petra began her fundraising efforts after her mum, who had received care from Marie Curie nurses, passed away. In the latest challenge, Petra and her husband completed a gruelling cycle of 250 miles from Nicaragua to Costa Rica. She has also climbed Mount Kilimanjaro and cycled from Vietnam to Cambodia in aid of Marie Curie. Add to that the efforts that she has undertaken in Scotland, including climbing Ben Nevis, walking the west Highland way and running a marathon and a handful of half marathons for the charity, and we can see the commitment that she has to the cause.

The only Marie Curie shop in the north-east of Scotland is located in my constituency, in Arbroath. Although people may bemoan the presence and number of charity shops on our high streets, it should be acknowledged that any money that is raised for Marie Curie stays within a 25-mile radius of where it originates. That resonates with people when it comes to donating to or supporting the charity. Across Tayside, 263 patients were seen in over 2,153 visits during 2015-16. That is 2,153 sessions involving nurses working day and night in people’s homes, providing hands-on care and vital emotional support.

However, I was even more struck by another couple of statistics that have been revealed by Marie Curie, which are that 2,500 parents die every year in Scotland, leaving 4,100 bereaved children, and there are currently 24,000 bereaved children in our country. Learning about the terminal diagnosis of a dear loved one, witnessing the progressive nature of an illness and treatment, and then grieving are hard enough for adults to cope with, let alone children and young people. According to Marie Curie, many of those children and young people are missing out on post-bereavement support. If that is the case on any kind of scale, it needs to be addressed. Marie Curie called for the introduction of a national co-ordinator for childhood bereavement services to review and advise on steps to improve such services, and the Scottish Government committed to that in its programme for government for 2016-17. I very much welcome that and, as Marie Curie does, look forward not only to the appointment of the co-ordinator later this year but to seeing what action is taken thereafter.

To conclude, let me reiterate my thanks to Linda Fabiani for bringing the debate to the chamber, to Marie Curie for the work it does and to the fundraisers—not just in Angus South but across Scotland—whose efforts make all this possible.

17:38  

I, too, thank and congratulate Linda Fabiani—not just for bringing this now annual debate to the chamber, but for managing to have it coincide with international women’s day and securing a hat trick by moving her first motion to extend a debate.

I spoke in a debate on this subject in 2015. Since then, Marie Curie has clearly gone from strength to strength. Every colleague who has spoken has mentioned the phenomenal fundraising effort since 1986. However, what is important about that £80 million is what it enables the staff to do. Linda Fabiani very helpfully reminded us of some of the work that is done in the area of mental health, which is perhaps an overlooked aspect of this debate.

I want to join others, too, in putting on the record my thanks to the staff and volunteers for all that they do—nationally, regionally and locally—for the terminally ill and for their families. I have a personal experience of that in the death of my father-in-law six years ago. The support that we got from Marie Curie was phenomenal. He was a cancer patient, but Marie Curie’s work goes well beyond treatment and care for cancer patients.

I note the work that Marie Curie is developing as regards the helper service. While that is a little constrained at the moment, I look forward to seeing it rolled out more widely, including, perhaps ultimately, to my Orkney constituency. In keeping with others, I will maybe concentrate some of my remarks on what is happening locally in the islands.

The service is relatively new in Orkney, and I am pleased that its coverage has been expanded since I spoke in last year’s debate. It has been built up from a pilot project that Dr Andy Trevett and his colleagues started in the Stromness and Dounby practices. Patient numbers are still relatively small, but the impact has been significant and the feedback from patients and families continues to be hugely positive.

Support from the wider community for the effort bears testimony to that. Linda Lennie, who has taken over as local chair of the volunteer group in Orkney, sent me an email earlier this week, in which she said:

“there is a growing awareness of the work the 4 nurses do and this is having a knock on effect with the donations we are receiving. The generosity of spirit of the Orcadian public never ceases to amaze me”.

I am delighted that Linda and local secretary Sarah Duncan are in the gallery—they can probably claim to have travelled further than most people to be here this evening. As someone who sat in Kirkwall airport for going on for six hours this morning, I also congratulate Linda and Sarah on having the foresight to come down yesterday rather than this morning, as was initially planned. For the record, I point out that no prosecco is available on Loganair flights. [Laughter.]

Discussions are going on with NHS Orkney about rolling out the programme more widely. I encourage the parties to reach a conclusion as quickly as possible. More can be done. As Marie Curie points out, one in four of the people who need palliative care is currently missing out. I suspect that the figure in Orkney is slightly higher, because of the relative newness of the service.

Such a figure runs counter to the Scottish Government’s palliative care strategy, which I very much welcome, and it is out of step with what I think is our collective commitment to care being delivered in communities far more routinely. There is a lot more work to be done as we celebrate the work that Marie Curie does.

I again thank all the staff and volunteers for the remarkable work that they do, not just in Orkney but throughout the country, to give people the dignity in death that they deserve. I very much look forward to raising a glass of prosecco—it might even be George Adam’s glass of prosecco—to the entire volunteer group later this evening.

I hope that there is a big enough supply, even if they are mean on the Loganair flights.

17:42  

I congratulate Linda Fabiani on securing this evening’s debate, in which I am pleased to take part. I am a new MSP, and I do not think that I have seen so many people in the public gallery for a members’ business debate. It is fantastic to see, and people are very much welcome to this, their Scottish Parliament.

I join Linda Fabiani in encouraging people across Scotland to support the great daffodil appeal and in paying warm tribute to everyone who is involved with Marie Curie and its work to provide world-class palliative care services.

As a Lothian MSP, I am very much aware of the importance of Marie Curie’s services to many of my constituents. My family has used a hospice, so I understand the value of the service to families and their loved ones at some of the most difficult times.

I visited Marie Curie’s Edinburgh hospice at Fairmilehead a few months ago and saw at first hand the good work that is undertaken there and the dedication of the local Marie Curie nurses, other hospice staff and the volunteers, 114 of whom support the work of the hospice.

The Edinburgh hospice serves south Edinburgh, Midlothian and West Lothian and had 425 admissions in 2015-16. The difference that the service makes to people living with a terminal illness as they near the end of their life, and the love and support that Marie Curie shows their families, cannot be overstated. It means that 95 per cent of patients who are supported by Marie Curie in Lothian are able to die in the place of their choosing. The hospice also provides an excellent day service for patients who are not admitted.

Marie Curie’s work in my region is not restricted to the hospice but takes place in the community and in patients’ homes. In 2015-16, 325 patients were cared for in the community in West Lothian and 564 were cared for in south Edinburgh and Midlothian. During that year, 3,653 community team patient visits were made locally, and more than 400 people benefited from Marie Curie’s patient and family support team bereavement support sessions.

Like other members, I highlight Marie Curie’s helper service, which I became aware of only recently. It provides people with a link to someone to whom they can chat over a coffee, or who can help them to run an errand or simply be there when they need someone to talk to—we should not underestimate the importance of that.

As Linda Fabiani said, although a lot of work is going on it remains a real concern that one in four Scots is still missing out on the palliative care that they need. There are particular challenges around how we ensure that people aged over 85, those who live alone and those from the black and minority ethnic communities in Scotland are given access to palliative care as well. As Marie Curie has said, we have to see clear progress, and evidence to show the number of people who are not accessing palliative care is required if we are to work to reduce that number.

As my party’s spokesman on mental health, I think that it is important to highlight the lack of research in Scotland and across the UK into whether people with severe mental health issues who require palliative care are receiving the support that they need. We still have a lot of work to do on that.

As the Presiding Officer will perhaps acknowledge, I recently undertook a fundraising exercise for the Children’s Hospice Association Scotland in which I had my legs waxed.

I enjoyed that.

I did not know that you took particular delight in your involvement in that, Presiding Officer.

However, one of my constituents undertook a far more important exercise. Luke Robertson, who is in the public gallery this evening, raised over £75,000 for Marie Curie through an expedition that he undertook last year when he became the youngest Brit—in fact, the first Scot—to complete an unassisted and unsupported expedition to the South Pole. He spent a gruelling 39 days skiing across 730 miles of ice and snow in Antarctica. My leg waxing was nothing compared to that.

I welcome the debate and hope that the Marie Curie daffodil appeal in 2017 goes on to break records for the amount that is raised. On behalf of the people whom I represent in the Lothian region who have used the service or whose loved ones have used it, I say a huge thank you to those at Marie Curie for the service and support that they provide and I wish them the very best for the future.

17:46  

I begin, as other members have done, by sincerely congratulating my friend and colleague Linda Fabiani on securing this debate on such an important subject as the Marie Curie daffodil appeal. I do not know whether Linda knows this, but her motion is one of the longest motions that has ever been lodged in the Parliament. It is 351 words long—all of them well crafted—and tells the story of Marie Curie well. I have just realised that that made me sound a bit like Stewart Stevenson, and I am getting a bit worried. [Laughter.]

Linda Fabiani told her story and I would like to tell a story of my own about meeting some of the staff and volunteers of Marie Curie in my constituency office in Stirling recently. James, Jennifer, Elizabeth and Joyce came to speak to me about the fabulous and vital work that they are doing across Stirling, the Forth valley and, indeed, the whole of Scotland. The discussion was set up by Susan Lowes, who does a wonderful job for the organisation, and the group told me about the care that is available to residents in the Stirling area who are living with a terminal illness and the support that is available to their families.

As we know, Marie Curie provides care and support for people with a range of terminal illnesses including dementia, heart failure, cancer, motor neurone disease and frailty. Increasingly, it is providing care and support for people with multiple health conditions. I heard about how local Marie Curie nurses work night and day, providing hands-on care and emotional support and enabling patients to be cared for and to die at home when that is their choice and it is appropriate for them to do so. Everyone knows that the death of a loved one is extremely difficult, particularly when they have been suffering from a terminal illness over a long period of time. The nurses at Marie Curie do absolutely everything that they can to make the last few weeks, days and hours as comfortable as is humanly possible not just for the patient but for their family and friends. In 2015-16 across NHS Forth Valley, 200 people were supported with 1,424 nursing visits.

When I met the representatives from Marie Curie a few weeks ago, just as the group was leaving, one of my staff members came in to speak to them and I discovered that one of them was a nurse who had looked after the mother of my team member in the days before she passed away—in fact, she had been there the night before she died. It was a very emotional moment for everyone in my office. It was the first time that the two had met each other since the home visit had been made by the nurse. I do not imagine that it was a one-off experience, though, as Marie Curie nurses are welcomed into people’s homes at some of the most difficult times in people’s lives. However, they enter with respect for the patient and family, providing care, kindness and much-needed support to all. In those few moments, which I will never forget, I saw just how much it meant to my staff member and the nurse.

Of course, in order to continue, the charity is dependent on the generous donations that it receives from fundraising. As others have said, Marie Curie is supported by over 85 local community fundraising groups in Scotland that help to raise about £4 million each year, enabling the charity to provide many of its caring services. I put on record my full support for the charity’s fundraising group in Stirling, which works hard to ensure that Marie Curie can continue caring for people in the local area. I know that that small group in Stirling alone has raised £27,000, which is remarkable.

Later this year, my office staff and I will take part in the blooming great tea party to raise money for the cause. I am told by Susan Lowes from Marie Curie that the blooming great tea party is all about the right ingredients—nice cuppas, naughty cakes, bad jokes and good conversation. I am sure that I can provide at least some of those, but I am not promising to provide any of the prosecco that we have heard about. It is all about having a blooming great time while raising money for a blooming great cause.

On behalf of everyone in Scotland, I thank all the wonderful staff and volunteers at Marie Curie. I encourage all my colleagues to sign up to hold a tea party for such a fabulous cause.

17:51  

People might start talking about me and Linda Fabiani, because on occasion when I have been speaking I have noticed her nodding vigorously—some of her colleagues might not be too happy to hear that—and I noticed myself nodding vigorously back as she opened the debate today. I sincerely and genuinely thank her for bringing this really important debate to the chamber.

As we have heard from every speaker today, we want to send one unified message, regardless of political parties, to each and every member of staff and volunteer across Marie Curie. It is a sincere thank you—thank you for caring for our loved ones at the most difficult periods in their lives. It is also important to recognise that, as Jill, a palliative care nurse in the Glasgow hospice, reminded me this afternoon, Marie Curie staff do not just care for the person who is dying; they care for the family at that most difficult time of need.

A part that is sometimes missed is that Marie Curie also advocates. We sometimes think that Marie Curie only looks after people in the most difficult period but, all year round, it advocates to parliamentarians in this place and other places about what more we as decision makers can do to support some of the most vulnerable people in our communities and how we can put palliative care on the agenda. To each and every one of the hundreds of staff and thousands of volunteers, I say thank you from the bottom of our hearts for every single thing that you do. I am sure that we have all been touched by Marie Curie and its fantastic staff or, if not, that we will be at some point in our lives.

Marie Curie has helped to move the discussion away from purely being about good health to being about how people die with dignity and get the support that they need, how we put patients at the centre of care and how we prioritise them and ask them where they wish to spend their final days and moments in this world, with their family members. It is about asking them what is important to them. Quite often, it is easy for us as parliamentarians simply to think about medicating or operating and people being in hospital. We need to ask patients what matters to them, whether that is preparing a will, preparing their children for the experience or, as I said, where they want to spend those final days. I again thank Marie Curie for applying that “What matters to you?” test for each and every individual patient.

At our party conference the weekend before last, I had the pleasure of meeting an individual named Richard Fairbairns. He is nicknamed Pops, so with his permission I will call him that. He talked powerfully about how important it is that those who work in our NHS have the time to care for individuals and how it makes an absolute difference to people if we have an adequate workforce to care, to give information, to provide a care plan and to partner with the family members. He talked about how we need to ensure that we represent people in urban and rural areas. He is from Mull, so he spoke about how we involve island communities in the important issues around palliative care.

In closing, I put on the record sincere thanks to every staff member and volunteer at Marie Curie. I thank them for everything that they have done; I am sure that there are hundreds of thousands of people across the UK who look to Marie Curie with pride and sincere thanks.

17:55  

I thank Linda Fabiani for securing the debate to welcome the great daffodil appeal, which is Marie Curie’s biggest annual fundraising event. I welcome all the volunteers to Parliament—especially the representatives from the Kirkcaldy constituency. Each year, the daffodil appeal raises more than £4 million in Scotland to help the 200 Marie Curie nurses who work across Scotland to care for and support people with terminal illnesses, and to provide emotional support for families, friends and the wider community.

The charity has made immense contributions to Scotland since it was founded in 1948—the same year as the NHS was established—and it provides the largest number of hospice beds outside the NHS. From 2015 to 2016, 1,863 well-trained volunteers were involved in fundraising in their communities and their local shops. Marie Curie does not only offer nurses who provide hands-on care and hospices that offer a friendly environment; it also helps people who are affected by terminal illnesses to get the information and support that they need, through the research that it carries out to improve care and support. Those services all come from the amazing work of volunteers and fundraisers, especially through the daffodil appeal, which has raised more than £80 million since 1986, and has contributed to giving people better-quality lives.

Those achievements would not have been possible without the help of the thousands of volunteers who make fundamental contributions to the provision of good-quality care. Marie Curie’s survival and success are dependent on the dedication and hard work of those volunteers, who dedicate their time and special skills to helping people who are in need.

Volunteering allows us to get involved with new things, environments and experiences; to create better environments for others; to create healthier communities; to meet a wide variety of people from all walks of life; to create networks and connections; to gain valuable insights and a sense of accomplishment; and to build potential future career options. In those ways, volunteering is a two-way street—volunteers and patients both benefit. The economic value of volunteering saves billions of pounds that can be used to ensure that the services that Marie Curie and its volunteers provide are the best that they can be, and can provide one-to-one emotional support, tackle social isolation and provide companionship

In my constituency, trained volunteers provide a unique one-to-one service. In 2014, Marie Curie partnered with NHS Fife to deliver tailored care and support at home for terminally ill people, and for their families. In 2015-16, 21 Marie Curie nurses cared for 318 patients in a total of 4,255 visits, and that vital support allowed 94 per cent of those patients to die with dignity in the place of their choice. The scheme works alongside other services and initiatives in Fife to meet the individual needs of patients and families. It is a great example of a partnership approach to providing health and emotional support services at what can be an extremely difficult time not only for patients, but for their families and the wider community.

I am extremely proud of the contributions that the Kirkcaldy funding group has made since its inception in 2014 by raising vital funds of more than £11,000. It spreads awareness, has participated in the town’s beach highland games and organises many events and activities in the community. Last year’s event was a fashion show that was organised by the group, which was extremely successful and raised £1,000 for the charity.

Volunteers are a vital part of the Marie Curie Fife service; they offer companionship and emotional support, provide practical help including aiding patients with small tasks, spend time with patients to allow breaks for their families and carers, and help people and their families to find further support and services that are accessible and available locally. Without volunteers, Marie Curie would not be able to deliver that range of services and support.

In conclusion, I again thank Linda Fabiani for securing the debate. I encourage everyone to give a small donation during March, and to wear a daffodil pin to raise awareness of and to promote the great daffodil appeal.

17:59  

I, too, warmly thank Linda Fabiani for lodging her motion and securing the debate.

The work of supporting and helping people who are suffering from terminal illnesses is what Marie Curie Scotland does best. Last year, 11 Marie Curie nurses in the NHS Ayrshire and Arran area helped 86 patients in 354 visits, and provided a 24/7 planned nursing service.

Beyond the direct help that it offers to patients and their families, Marie Curie also helps to relieve pressure on the NHS. It is an essential partner in taking care of terminally ill patients. The charity also works to build a fairer and healthier Scotland by delivering services, support and information.

Marie Curie raises funds in numerous ways—most famously, through its daffodil appeal. When I first wore a daffodil some 30 years ago, people kept asking me whether it was St David’s day. I am pleased to say that no one asks me that now.

Marie Curie has a network of shops. Back in 2015, I volunteered for a day in one of them in Saltcoats, in my constituency. I commend the work of all 1,863 Marie Curie volunteers across Scotland—people who do not just put in a day, but give of their time week in and week out, year after year.

Marie Curie addresses human vulnerability and the right to die with dignity, where the person wants to die, surrounded by loved ones. That is an elementary right, and 94 per cent of patients who were supported by Marie Curie in Ayrshire who passed away last year did so in the place of their choice.

Marie Curie offers a large range of services for thousands of people who are living with terminal illnesses, and their families: from home nursing care to Marie Curie hospices, and from medical care for patients to psychological support for carers.

Marie Curie supports individuals not only from life to death, but after death, by helping families in their grief and with administrative formalities, which can be daunting. Marie Curie’s great daffodil appeal is an occasion not only to raise money for services and research, but to raise public awareness about terminal illness—a matter that is little discussed in public.

Research investment is vital. Only 0.16 per cent of charitable and Government research funding in the United Kingdom is spent on end-of-life care. A fifth of that is invested by Marie Curie.

It is estimated that about 40,000 of the 54,000 people who die each year in Scotland need palliative care. Unfortunately, as a result of inequalities combined with lack of information and appropriate infrastructure, about 11,000 people are deprived of that elementary service. We need to improve palliative care by promoting innovation in the field—especially because we know that one in eight people will be 75 or older by 2031.

With that in mind, the Scottish Government’s “Strategic Framework for Action on Palliative and End of Life Care” aims to improve the system, with the goal of offering palliative care to anyone who needs it by 2021. The objectives that are outlined in the strategy are not only quantitative, but qualitative. The key is to bring to more people the care that is required in coping with a terminal illness.

In recent months, I have heard the concerns of constituents who are taking care of terminally ill relatives and are confronted with intolerable administrative delays when accessing the benefits to which they are entitled. Marie Curie highlights such difficulties and recommends the development of a fast-track system for people who are terminally ill. The personal independence payment is a step towards that. It allows the terminally ill person or his or her representative to fill in fewer forms than they normally would, and the Department for Work and Pensions will fast-track the application. However, the PIP can be useless in instances when a DS1500 report cannot be attached to the application. That report must be completed by a general practitioner or consultant who confirmed the terminal illness, but sometimes such a diagnosis cannot be delivered by the core medical team and the patient finds himself or herself in circumstances where they cannot access help. I believe that the current system needs to be improved to help all patients, regardless of their diagnosis, and I support the Marie Curie report’s recommendation for developing a fast-track process within the DWP.

More generally, the spirit of speeding up the administrative process for people who are dying and their families should be extended to every level of administration, from communities to national level.

Scottish ministers and the Scottish Parliament must make the best possible effort to help families who are confronted with such issues; we must listen to them and ensure that they are helped by the appropriate services.

I commend the work of Marie Curie Scotland, especially in my Cunninghame North constituency, and I once again thank Linda Fabiani for bringing the debate to the chamber.

18:04  

I, too, would like to thank Linda Fabiani for bringing her motion to the chamber. Linda is absolutely right: we have been offered a chance to celebrate the fabulous great daffodil appeal, which is now in its 31st year, and to celebrate what volunteers do. It is wonderful to see some of the volunteers here tonight—I think that Linda described them as a beautiful host of golden daffodils, and she was right to do so.

I also give special thanks to the people around Scotland whose generosity over the years has helped to make the Marie Curie great daffodil appeal such an extraordinary success. Local efforts have been discussed by many members, including David Torrance, Liam McKerr—sorry, Liam McArthur. I apologise; I am getting my Liams mixed up—if Liam McArthur could put his hand on his hip, he would remind me of Liam Kerr. [Laughter.] Kenneth Gibson, Miles Briggs, George Adam, Graeme Dey and a whole host of members talked about how important local efforts are to making the appeal such a success.

Donald Cameron and Rona Mackay are right to acknowledge women such as Marie Curie on international women’s day. Through history, so many inspiring women and their work have been forgotten, but Marie Curie’s dedication, intelligence, strength and commitment—and the charity in her name—have ensured an enduring legacy.

I am sure that we all agree that the work that is done by Marie Curie in Scotland is invaluable. Its expertise in the field of palliative and end-of-life care is renowned and it fulfils a vital role in supporting not only those who are nearing the end of their lives but the multitude of families and friends who surround them. I had an opportunity at the beginning of this year to hear more about the work of Marie Curie in my constituency. The sheer breadth of the work that is being undertaken is truly phenomenal.

The skilled care that Marie Curie provides is more important than ever. The demand for such services is only going to increase due to the well-understood changes in our population. More people in Scotland are living longer—that is a good thing—and, as we grow older, more of us grow frail and have multiple long-term conditions involving specific palliative care needs. 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, which we are taking concrete steps to address.

We are committed to understanding the needs of our different communities. We want to remove discrimination, reduce inequality, protect human rights and build good relations by breaking down barriers that might hinder people and prevent them from accessing the care, services and supports that they need. That point was made by Colin Smyth and I pay tribute to him for his long-standing commitment on that agenda.

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 over the past few years. We have increased the numbers of specialist staff, improved access to services and, through our programme of health and social care integration, put services under the control of our local communities. Through that work, people are enjoying greater choice and control over their care and, as a result, pressure on NHS acute care units has been reduced, families and carers are better supported and, most importantly, the people who could benefit from palliative and end-of-life care are increasingly receiving it. However, there is no complacency and we understand that there is far more to do.

What the minister said about acute care is right. One of the concerns that are mentioned in Orkney and across a number of health boards is a frustration that the finance is not moving further into the primary sector to allow more care to take place in the community. Does the Government have a focus on that?

We all agree that there is a need to shift the resource to primary care and to have preventative efforts in place, but I recognise that that is a big shift and a big challenge. It is a challenge for rural and remote communities as well, including the one that Liam McArthur represents. The Government is keenly aware of that and is working hard to build momentum on that.

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 are absolutely right to be ambitious in this area.

In December 2015, in response to a World Health Assembly resolution that required all Governments to recognise palliative care and to make provision for it in their national health policies, we published our strategic framework for palliative and end-of-life care. The framework set out a number of commitments that were designed to improve the quality and availability of palliative and end-of-life care in Scotland and we committed £3.5 million over four years towards realising that vision.

However, to achieve the 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—that echoes the point that Liam McArthur made—to ensure that the unique needs of individuals are met, and that ethos is at the heart of health and social care integration. Integration authorities are working with local communities and are building on the expertise of organisations such as Marie Curie to commission services that are designed to meet the palliative and end-of-life care needs of their local community. By commissioning services in that way, improvements will be driven through meaningful, collaborative partnerships with the palliative and end-of-life care community and, importantly, with the extraordinarily passionate and committed individuals who work tirelessly to improve support for end-of-life care for so many.

As set out in our strategic framework we have asked Healthcare Improvement Scotland to test and implement improvements in the access to and delivery of palliative and end-of-life care. That work includes developing better ways to identify all those who might benefit from palliative and end-of-life care, and especially the frail elderly.

Many members raised the issue of data. Data is vital. Without it, we will not know whether people are getting the palliative and end-of-life care that they need, local communities cannot commission the services that are necessary to support people’s care, and care plans will remain hard to share. The data challenge is recognised in our framework, which includes 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 to individuals who are receiving care and to integration authorities.

Working with the NHS Information Services Division, the data group is also investigating a number of areas in which data collection and use can be improved. Additionally, our mental health strategy, which is due to be published shortly, and the Marie Curie report “Enough for everyone: Challenging inequities in palliative care”, which was published last autumn, will be helpful in informing that work and assisting in making sure that the needs of those who have mental health conditions are considered in the implementation of the strategic framework. That point was sensitively and correctly raised by Linda Fabiani in recognising the mental health needs of carers and those who are being cared for.

I turn briefly to the values and skills that people need from our health and social care staff. Colin Smyth and Kenneth Gibson also recognised how hard we, as a nation, find it to discuss death and dying, but the skill at having such difficult conversations is critical for anticipatory care planning conversations. Having those conversations, and sharing what matters to the person at the end of their life can make all the difference to how and where they die. That also ties to the point that Anas Sarwar raised. Although he did not say it explicitly, I think that he was also saying that it resonates strongly with the realistic medicine approach that has been set out by the chief medical officer.

Something else that is relevant to the community empowerment approach to palliative care is that, last week, I was privileged to be at the launch of compassionate Inverclyde, which embodies the ethos of whole communities coming together to support each other with compassion at points of grief, loss and change. It builds on the skills and assets of a community and opens up the discussion about death and dying.

Finally, I would like to say a bit about palliative care research. As part of the programme of work that is set out in our strategic framework, we have established a research forum, which focuses on the research that is associated with the strategic aims of the framework. It also helps to bring that research to bear on shaping the commissioning, improvement and education of palliative care in Scotland. We have also recently provided funding to the forum to support Marie Curie and colleagues in the University of Edinburgh, including Professor Scott Murray. I certainly recommend that Colin Smyth and Linda Fabiani, who have a real interest in the area, listen to Professor Scott Murray, who has a way of communicating with a great deal of passion.

We are funding a systematic review of more than 400 relevant research studies that were undertaken in Scotland, which will help us to develop a clearer picture of research and data gaps and to support improvement. In acknowledgement of the collaborative nature of work in the field, in May we will jointly sponsor a seminar with Marie Curie that will provide a forum to explore other areas of research that will help us to move forward with the framework’s action plan.

This has been an incredibly informed and instructive debate that has rightly acknowledged the progress that has been made on palliative care, while recognising the remaining challenges. Across Parliament, we are united in our need to approach palliative care through a public health lens, and we are also united in our appreciation of the work and dedication of the volunteers and Marie Curie workers across Scotland. Whether it be holding a hand, or embracing someone in the most difficult of times, it costs nothing, but the support that it offers to an individual or a family is priceless. We have a special opportunity tonight to come together as a Parliament and simply say thank you to everyone who is involved with Marie Curie, and they should know that we say that on behalf of everyone across the country.

Meeting closed at 18:14.