Meeting of the Parliament

Meeting date: Thursday, March 16, 2023

Official Report 1125KB pdf

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Marie Curie’s Great Daffodil Appeal 2023

The next item of business is a members’ business debate on motion S6M-07752, in the name of Gillian Martin, on Marie Curie’s great daffodil appeal 2023.

Motion debated,

That the Parliament welcomes Marie Curie’s Great Daffodil Appeal 2023, which runs throughout March; praises Marie Curie nursing and hospice staff who continue to provide palliative and end of life support, across Scotland in people’s homes and in its two hospices in Edinburgh and Glasgow, during challenging times; understands that Marie Curie cared for over 8,660 people during 2021-22; commends the dedication, hard work and contribution of Marie Curie volunteers across Scotland; considers that the COVID-19 pandemic highlighted how important equitable access to palliative and end of life support is for people affected by terminal illness; notes that donations can be given to the appeal, and that daffodil pins are worn in memory of someone who has died; understands that Marie Curie needs to raise £250,000 per week to support its frontline services; commends the vital care and support that Marie Curie provides across Scotland, including in the Aberdeenshire East constituency; praises its information and support services, which are available for everyone affected by terminal illness, including for bereavement support, and its volunteer helper services, which provide vital emotional support, companionship and information to terminally ill people, carers and families; believes that wearing the daffodil pin unites millions of people who believe that dying people should get the care and support that they need; considers that the funds raised will mean a great deal to terminally ill people, and notes the calls encouraging as many people as possible to support the Marie Curie Great Daffodil Appeal in March 2023.

12:51  

It is my great pleasure to open this members’ business debate on Marie Curie and this year’s great daffodil appeal, to recognise the work that Marie Curie does and to give our support to the organisation throughout Scotland for the work that it does for our constituents. I thank everyone who is speaking in the debate and the people from Marie Curie and beyond who are joining us in the public gallery.

On Tuesday this week, it was my privilege again to host the launch of the Marie Curie great daffodil appeal in the Parliament. I wish to say a huge thank you to the massive number of MSPs who came along. I had a fair old list to read out, and I really appreciate all the support from members. I thank all the representatives of partner organisations involved in end-of-life care who were there, too, as well as all the members of the public who came into their Parliament to hear about the work that Marie Curie does.

Anyone who was there on Tuesday will have since then been thinking a lot about the words of Hayley Smith. Hayley spoke to a packed garden lobby about her late husband Matt and the care and support that they received from Marie Curie nurses, both at home and in the hospice. Matt died from inoperable brain tumours in 2021 when he was just 32.

Our event on Tuesday was on Hayley and Matt’s wedding anniversary, and I am in awe of her courage in speaking to us that night. After being married for only about a year, Matt was diagnosed with a brain tumour in 2016. He was only 28 years old, and the couple were told that he had a year to live. They had a good couple of years despite that prognosis, after initial treatment, until, devastatingly, more tumours appeared, and Matt’s health deteriorated. For months Hayley dropped everything and single-handedly cared for Matt, not knowing what help they were entitled to. It was exhausting and it was too much, particularly with Covid restrictions.

Then, after many months of struggling, Hayley was put in touch with Marie Curie, which immediately stepped in and changed everything, lifting a massive weight off Hayley’s shoulders and ensuring that Matt had the very best support available. In his last few months, he remained in Marie Curie hospice care in Edinburgh, where he received incredible support and care, highly tailored to his wishes and needs. As Hayley said, “No ask was too much.”

Hayley told us that it was a few months after Matt died before her grief really hit her. After just one phone call to Marie Curie, she had a one-to-one appointment for the next day, which was the beginning of regular bereavement support.

The thing is, however, that when things got really tough for Hayley and Matt, she did not know about the support that she could get, even though she actually works in the palliative care field, for Children’s Hospices Across Scotland, which cares for children with terminal illness. If she did not know about the care that she could get, Hayley wonders how someone with no connection to that sector would ever find out.

I spoke to Hayley after her brave and beautiful speech on Tuesday night and I am sure that she will not mind me sharing what she told me, because it really struck me. She said that, when someone gets pregnant, a system kicks in and a plan is made for a good birth; when someone gets a diagnosis of terminal illness, no plan kicks in for a good death. I know that work is being done to rectify that and I look forward to hearing the minister telling us about the Government’s work to improve that.

Marie Curie has been providing invaluable care and support to people living with terminal illnesses, and their families, for more than 70 years, delivering vital services at one of the most difficult times in people’s lives. Having begun in 1986, the great daffodil appeal runs throughout the month of March each year. Next Thursday, on 23 March, Marie Curie will also hold a national day of reflection.

As I said when I led this debate last year, I hope that all my MSP colleagues, whether they are speaking or listening today or came along on Tuesday, will give prominence to the appeal in the constituencies and regions that they represent. Marie Curie is a household name, but I ask my colleagues to raise further awareness of its work.

Marie Curie provides many forms of support. Care is provided to patients in their own home, helping people to manage their symptoms and maintain their independence, and there is emotional and practical support for families. An enormous amount of work is done to ensure that people can die with the dignity and comfort that we all deserve. Many people do not realise that Marie Curie also does an enormous amount of research, which is geared towards improving care for a huge number of conditions. Even a cursory look at the reports on the website or at the information about Marie Curie’s funded programmes will astonish you.

However, the cost of delivering that incredible work is around £250,000 per week to cover front-line services, at a time when the need for end-of-life care is set to increase. By 2040, an estimated 10,000 more people will die with palliative care needs each year. In the context of our ageing population, dementia has been a leading cause of death for a number of years. The number of people dying from dementia is set to increase threefold by 2040.

Although many families have a positive experience of hospital death, relatives can often struggle with the costs and time constraints of travelling to and from hospital, and many terminally ill people prefer to die at home, surrounded by familiar comforts. Marie Curie, through the hard work and generosity of staff and volunteers, makes that possible.

Last year, Marie Curie supported 8,660 people in Scotland affected by terminal illness. Let us support Marie Curie and encourage each other to back the great daffodil appeal by making a donation, wearing a daffodil pin—as I see that everyone here is doing today—taking up one of Marie Curie’s public collections or shopping in a charity shop. Anyone who is making a will might want to add a gift to Marie Curie.

We should spread awareness of Marie Curie’s phenomenal work. The most important thing is to let people know that Marie Curie exists and what is on offer. Together, we can help Marie Curie reach more people who are in need, as Hayley was when she and Matt were going through the worst of times alone.

I look forward to hearing my colleagues’ speeches and thank everyone for their continued support of the great daffodil appeal.

12:59  

I thank Gillian Martin for bringing and leading this debate to coincide with Marie Curie’s great daffodil appeal 2023. The debate again gives us the opportunity to acknowledge the invaluable work undertaken by Marie Curie nurses, staff and volunteers. We do that on behalf of everyone who has received Marie Curie’s assistance, including those who are living with terminal illness, their families and loved ones.

Just as important, however, the debate gives us a chance to highlight some of the challenges that Marie Curie faces, and I hope to touch on a couple of those in my speech. As the motion highlights, the scale of the challenges that Marie Curie faces was magnified during the pandemic. Across Scotland, Marie Curie cared for 8,660 people with terminal illnesses in 2021-22. That figure is only slightly lower than the figure of over 9,000 in 2020-21, which was the highest number of patients to be cared for in a single year since the charity was established 70 years ago.

As is my usual approach, I want to put a face to the statistics. My father was one of the over 9,000 people who received end-of-life care in 2020. Circumstances in such times are often harrowing. Watching a loved one slowly dissolve in front of one’s eyes is hard enough but, given the additional pressure applied by lockdown restrictions, the feeling of isolation added to the hopelessness.

Presiding Officer, I am going to use the C word: cancer. It is an awful disease, and time is of the essence. Speedy access to treatment turns diagnosis despair into hope. Conversely, delayed action allows the disease to spread, resulting in an all-too-certain outcome.

On a side note, too many people are waiting for cancer treatment right now, and we can never lose sight of that, regardless of how distracted the Cabinet Secretary for Health and Social Care may be.

My father had oesophageal cancer that had migrated to his liver. Liver, liver, life giver. It is the organ that purifies the system and is such an important part of keeping the other organs working at an optimum level. Once the liver can no longer do that cleansing job, the decline is rapid.

I want to mention in particular the last night of my father’s life. The Marie Curie nurse was obviously there for my dad, but the support that was given to my mum was above and beyond. My mum still refers to them as angels, and who can argue with that?

In the Mid Scotland and Fife region, Marie Curie’s small team of just 25 nurses across Fife, Forth Valley and Perth and Kinross saw over 700 individual patients and made a staggering 4,054 visits in the year 2021-22. End-of-life care is as important as any other aspect of our health and social care system. Thanks to the work of the nurses and volunteers in my region, 95 per cent of patients supported by Marie Curie in NHS Fife, 96 per cent in NHS Forth Valley and 93 per cent in NHS Tayside have been able to die with dignity in the place of their choice.

Those are phenomenal statistics, but there is still so much more that needs done. In Scotland, by 2040, there will be over 62,000 people dying with palliative care need; co-morbidities will have increased by 80 per cent; and two thirds of deaths will happen in community settings. Despite that, however, and the widespread recognition of the work of Marie Curie, the fact is that, each year, one in four people in Scotland will die without end-of-life care. In Mid Scotland and Fife alone, out of the 8,095 people who die each year, 7,285 have a palliative care requirement.

The numbers are overwhelming, and I have not even broached the subject of the numerous groups who still receive less palliative care than others with comparable needs. Those groups include older people; black, Asian and minority ethnic groups; LGBT people; people living in deprived areas; and people who have mental health conditions. If only I had more time, and I am already over.

I extend my best wishes to everyone across Scotland who is involved in providing palliative care and I thank them for their invaluable support. On a personal note, “thank you” can be an inadequate phrase, but I say it from my heart.

13:03  

I thank Gillian Martin for bringing this critically important debate before us this afternoon. I have a great interest in the work of Marie Curie. There is a wonderful hospice at Stobhill in Springburn, in my constituency, and Marie Curie provides an extensive amount of wider support to the communities that I am privileged to serve across Glasgow Maryhill and Springburn. That includes support for individuals, families and carers as loved ones approach the end of life, but wider support is also offered. Palliative support is extended to those with longer-term life-limiting and various terminal conditions.

Marie Curie is an asset and we should cherish and support it. In that context, the great daffodil appeal is vital to supporting the wide range of services that it offers our communities, as Marie Curie needs to raise £250,000 per week to support its activities and services across Scotland—I have mentioned some of its work already.

That money also enables the charity to carry out important research, as we heard earlier, which can shape public policy and improve practice across the wider palliative and end-of-life care sector. As chair of the Parliament’s cross-party group on palliative care, I know that very well.

I am sure that Marie Curie and the wider palliative care sector will play a valued role in helping to shape the forthcoming refreshed Scottish Government palliative and end-of-life care strategy. For instance, Marie Curie research projects that, by 2040, 10,000 more people in Scotland will die with palliative care needs.

It is clear that Marie Curie and the wider sector will have a growing and central role in helping to meet the essential palliative and bereavement needs of society. That requires placing the sector on a stable financial footing, to allow it to invest and expand. I know that the Scottish Government is up for that and is aware of the current headwinds in relation to the sector’s energy costs and its staffing pressures and costs following the successful national health service pay deal for nurses. That deal is very welcome, but it has placed pressures on the sector.

Just today, I had an encouraging update from Hospice UK that gives me great confidence that the Scottish Government is engaging seriously with the sector in order to tackle both the short-term pressures and, importantly, the longer-term strategy. Following its meeting with the cabinet secretary and the minister, it said to me:

“It was a very constructive meeting where they”—

that is, the Scottish Government—

“recognised the contribution of hospices and the pressure being faced by the sector. They agreed to the need for a national funding framework to address current inequities and put hospices on a sustainable”

financial

“footing, and have asked officials to start looking at what options could be available.”

That is key partnership work.

I return to the great daffodil appeal, which is an inspiring example from Marie Curie as to exactly how the charitable hospice sector can draw funds that otherwise would not be available to all our efforts to provide the love, care, compassion, dignity and support that we, as a society, want to extend to everyone and that we all would like to receive when we have life-limiting conditions or as we approach the end of life. I wish the campaign every success.

In addition, I thank the wider palliative sector for the love and support that it showed to my parents when they passed away: my dad, who died at St Margaret’s hospice in Clydebank in 2016, and my mum, who died in the Vale of Leven hospital in 2015—an example that an NHS hospital still has to provide good-quality palliative support for many at the end of life. Both institutions were exemplary in supporting my mum and dad, and they have my heartfelt thanks. In the years ahead, society will need Marie Curie and the wider charitable sector more than ever, to support us with the quality of our life and the quality of our death.

I thank Marie Curie for all that it continues to do for the communities that I serve and for communities right across Scotland.

13:08  

I thank the member for Aberdeenshire East for lodging the motion for debate on Marie Curie’s great daffodil appeal. Everyone here, I think—in both the chamber and the public gallery—will have had some experience with the vital work of Marie Curie at some point in their life, and I am pleased to have the opportunity to discuss the importance of that care.

Just last week, I had the privilege of visiting the Marie Curie hospice in the grounds of Stobhill hospital in Glasgow. I remember fundraising for the hospice as a pupil at the nearby Turnbull high school some years ago, but this was the first time that I had the chance to see inside the new facility, which opened in 2010.

During my visit, I was struck not just by the impressive nature of the facility but by the peaceful environment that the staff and volunteers have created for those who visit, often under very difficult and distressing circumstances. The exceptional team there stressed the importance of making patients and their families feel welcome and at ease, and shared its hope that local people around the hospice will use the facility as a community space, stopping in for coffee or lunch, instead of seeing it as a daunting or strictly medical facility. That was very important and insightful.

I was born at Stobhill hospital, and I remember my gran passing away there in 1995. It is interesting to reflect on the contrast between how we treat the start of life and how we treat its end, which will be a universal truth for us all. It is something that we, as a society, still have a dread of and a fear of talking about. It was interesting to be confronted with that in quite a stark way at the hospice. It left me with some significant things to reflect on.

I was also privileged enough to meet some of the patients receiving palliative care in the hospice. One of the patients has not been far from my mind since my visit last Friday. The patient had dealt with various challenges throughout the course of her life. She told me about those challenges, but she was even more keen to tell me about the positive path she had paved for herself after surviving that trauma, prior to her cancer diagnosis. Her two boys had grown up healthily, she had moved into her own home and she was enjoying quality time with loved ones. She said:

“I was listening to myself speak to people, knowing that it was the real me, and I liked the real me—then I was diagnosed with cancer.”

Sadly, I was informed this morning that she passed away last night. I know that the care of Marie Curie in her final days brought her comfort and dignity, which was incredibly important to her and which made a deep impression, even in the few minutes that I spent with her.

Her story sums up one of the many cruel aspects of cancer. This disease does not care how old you are or if you are at an exciting or positive juncture in your life. We have no control over when cancer throws people’s lives into chaos or despair, as we heard powerfully from Hayley at the reception in Parliament earlier this week, as the member for Aberdeenshire East mentioned. It was a deeply moving testimony.

What we have control over is the quality of care that people receive in the wake of a cancer diagnosis, and hospices such as Marie Curie and others need our sustained support to guarantee that care. News reports this month indicate that hospice leaders in Scotland expect a £12 million increase in wage bills if they are to remain competitive with the NHS and retain staff, and those reports are troubling to hear.

The reality is that most hospices are reliant on donations to meet those costs. Marie Curie needs to raise £250,000 per week to fund its services in Scotland. Approximately 70 per cent of funding for Children’s Hospices Across Scotland comes from fundraising. The Accord Hospice in Paisley depends on donations for 60 per cent of its income, and its costs have risen by £300,000. Fundraising, which can often be hard to predict, and yearly reviews of what funding is sustainable makes forward planning and responding to local need a challenge for hospices, and a deeply distressing one at that.

I therefore urge the Scottish Government to provide urgent support for palliative care providers to provide assurance that staff salaries are competitive with the national health service, and to commit to establishing a national partnership with hospices in the longer term so that the sector can deliver sustainable and universal palliative care options in line with the needs of local communities. That is a no-brainer. It will save the NHS money and deliver better dignity to all our citizens who are facing the end of their lives at that point in their lives. It is important that we consider the appropriate settings for people and that they are not dying inappropriately in acute hospitals. As I mentioned earlier, and as has been movingly mentioned by others, cancer is a disease that, in many ways, we cannot control. That is even more reason why we should commit to improve the aspects that we can.

13:13  

I thank Gillian Martin for securing the debate and welcome the great daffodil appeal, which is Marie Curie’s biggest annual fundraising campaign.

I have always been impressed by the work of Marie Curie and its commitment to helping people get the vital care that they urgently need. Of course, none of that would be possible without the tireless dedication of its fantastic fundraising groups. Last year, those amazing groups of people raised more than £3 million of funding for people living with a terminal illness and their families. They play such an important role by organising fundraising events and activities within their local communities, acting as ambassadors and helping to spread the word about the work of the charity.

All across the country, groups of volunteers meet regularly to organise and support fundraising activities to help the 2,000 Marie Curie registered nurses or senior healthcare assistants who care for and support people with terminal illnesses, and who provide emotional support for families, friends and the wider community.

Many volunteering activities were put on hold during the pandemic, but volunteers are a vital part of Marie Curie’s Fife service. They offer companionship and emotional support; provide practical help, such as aiding patients with small tasks; spend time with patients to allow their families and carers to have a break; and help patients and their families to find further support and services that are readily accessible and available to them locally. Without volunteers, Marie Curie would not be able to deliver the range of services and support that it does.

The charity has made an immense contribution to Scotland since it was founded in 1948, the same year that the NHS was established. The work started in 1952 with the opening of a home for cancer patients in the Hill of Tarvit in Cupar, Fife. More homes were opened, medical research was started and day-to-night services were provided.

Since 1986, the daffodil appeal has raised more than £80 million, which has contributed to giving people a better quality of life. With almost 75 years of experience, Marie Curie not only offers nurses who provide hands-on care in hospices with a friendly environment but helps everyone who is affected by terminal illness to get the information and support that they need through the research that it carries out to improve care and support. Last year, the money that was raised helped to support about 46,000 people in their homes or care homes.

Several years ago, the Marie Curie Fife hospice-at-home model—a fully funded integrated care pilot in NHS Fife, which complemented existing services and initiatives—was developed by the Marie Curie service for generalist palliative care. The pilot proved that providing community-based care with a local team is meaningful. The model included registered nurses, healthcare assistants, health and personal care assistants and trained volunteers.

The results of the pilot showed that a large number of patients and carers benefited from an approach that offered them a choice about the level of service that they wanted and where they wanted to receive it, with the vast majority of people being able to die in the place of their choice. Patients supported by the hospice-at-home model of care experienced fewer hospital admissions and fewer visits to accident and emergency departments, and they were two and a half times more likely to die at home. The pilot showed that hospital costs for end-of-life care were reduced by £182,000 by reducing the number of avoidable hospital admissions.

The pilot has informed future service delivery in Fife, with end-of-life services working alongside other palliative care organisations, professionals from palliative care outreach, community nursing, acute health services and Marie Curie.

Thursday 23 March marks the third national day of reflection. On that day, we will all have the opportunity to remember our loved ones who died, to support each other and to be there for people who are grieving. Marie Curie launched the national day of reflection in 2021 as a day to remember those who died during the pandemic, but support for the people who were grieving was affected by lockdown. It is a day on which anyone who has been bereaved—no matter how long ago or what the cause was—can come together and remember loved ones who have died.

I once again thank Gillian Martin for securing the debate. Demand for palliative and end-of-life care is rising rapidly, and that trend is expected to continue as our population ages. During March, I encourage everyone to wear a daffodil pin to raise awareness of the great daffodil appeal and to show support for the individual service that is provided by Marie Curie nursing and hospice staff.

13:17  

I thank Gillian Martin for lodging the motion for the debate, and I thank members for their speeches.

Like many members who are in the chamber, I attended the Marie Curie great daffodil appeal reception on Tuesday evening. It was inspiring to meet people, covering a wide range of roles, who are devoted to helping people who are affected by terminal illness, their families and their carers. On behalf of myself and all those who have experienced or been affected by terminal illness or bereavement, I thank the Marie Curie volunteers and staff for all that they do.

I agree with Gillian Martin and other members that Hayley Smith’s testimony was incredibly powerful. It would be wonderful if each of us could ensure that everyone hears her story, so that people know what care is on offer if they find themselves in her shoes.

The Scottish Government is proud to be working with Marie Curie and the hospice sector across Scotland to build a new palliative and end-of-life care strategy. There is huge commitment and dedication across all sectors and partners who work to deliver palliative and end-of-life care, and I absolutely welcome Marie Curie’s support in that.

We are agree that we want there to be equitable and timely access to the palliative care that is needed by each person of any age, with any illness and in all care settings, including their own home, and we want to take a personalised approach that gets it right for everyone based on what matters to each person and their family and/or carers.

We want Scotland to be a place where people and communities can come together to support and care for each other and to talk openly about planning ahead for when our health changes and about dying and bereavement.

Talking about dying needs to be something that we can do with our family, friends, carers and health and social care staff. One way to start having those conversations is through anticipatory care planning, which enables people to talk to health and care professionals about what matters to them. The conversations are recorded and shared as a plan, so that subsequent care and support honours that plan. We are prioritising work on anticipatory care planning. We are looking at what information is available, the systems that are in place and what can be done to promote the use of that planning across Scotland.

No terminally ill person, or their family, should have to worry about their finances at such a difficult time. Through the family fund, the Scottish Government provides grant support to families on low incomes who are raising disabled or seriously ill children and young people. This year, we have committed a further £2.974 million of funding for the family fund’s grant scheme, which is expected to provide financial support to more than 6,000 families in Scotland.

We shared our draft carer support payment regulations with the Scottish Commission on Social Security on 3 March. That is an important milestone towards rolling out our new benefit from the end of this year, with the national launch in spring 2024.

I am acutely aware that energy consumers, especially those who receive treatment at home, are feeling the impacts of recent price hikes, and I appreciate the stress that that causes. The UK Government’s significant cut in support for non-domestic consumers with their energy costs beyond March is very concerning, particularly for the more vulnerable sectors.

Scottish ministers wrote to the UK Government at the end of last year to express our disappointment at the lack of opportunity for us to engage in the review of the energy bills relief scheme and to stress that any continued support should be aimed at the businesses and sectors that need it the most.

We have pledged almost £3 billion in this financial year alone to contribute towards helping families and households face the increased cost of living. That includes the provision of services and financial support, not available elsewhere in the UK, to reduce everyday costs and increase incomes.

During First Minister’s question time on 2 February 2023, a commitment was given to meet Jeremy Balfour to discuss the important matter of the reimbursement of energy costs for people using life-saving medical equipment at home. I also understand the financial pressures that hospices face. The cabinet secretary and I met representatives from the hospice sector, including Marie Curie, on Tuesday. It was a very constructive meeting, and we will, in the coming weeks, follow up on all the issues that have been brought to our attention.

We are committed to ensuring provision of high-quality child palliative care, regardless of location, supported by sustainable funding of at least £7 million a year through Children’s Hospices Across Scotland, which is known widely as CHAS. We are also engaging in discussions with CHAS and health boards to consider options for planning, funding and reviewing CHAS services, with a focus on improving sustainability and oversight.

The experience of losing someone important is one of the most difficult challenges that any of us will face. Getting the right care and support during bereavement is crucial for our health and wellbeing. For many people, support and comfort needs will be met by family and friends, but some of us will need wider support. We are undertaking work across the Scottish Government to improve the bereavement care and support that is available, and to ensure that it is woven into the palliative and end-of-life care strategy.

Last May, in partnership with NHS Inform, the Scottish Government launched the “Mind to Mind” website to give people access to wellbeing information and signposts to relevant organisations that can help.

Bereavement support is a priority in our £15 million communities mental health and wellbeing fund. In recognition of the fact that poorer mental wellbeing, loneliness and social isolation often follow a bereavement, the fund gives local groups and organisations the support that they need to ensure that people make social connections and look after their mental health.

Support with grief and bereavement is an integral part of palliative and end-of-life care. Through our funding, we support public health responses relating to talking about dying and death. We provide core funding to the Scottish Partnership for Palliative Care to support its work, including its Good Life, Good Death, Good Grief initiative and its work on bereavement. We also fund its end-of-life aid skills for everyone—EASE—approach, which is designed to enable people to be more comfortable and confident in supporting family and community members with issues that they face during death, dying and bereavement.

I again thank all the people who work and volunteer for Marie Curie and all palliative and end-of-life care services across Scotland.

13:25 Meeting suspended.  

13:59 On resuming—