Meeting of the Parliament

Meeting date: Wednesday, September 18, 2019

Official Report 991KB pdf

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Children’s Hospice Association Scotland

The final item of business is a members’ business debate on motion S5M-18408, in the name of Miles Briggs, on the Children’s Hospice Association Scotland, keeping the joy alive. The debate will be concluded without any question being put.

Motion debated,

That the Parliament welcomes the positive impact that CHAS has in Lothian and across Scotland on children and young people with life-shortening conditions and their families, which is a mission that the charity describes as “Keeping the Joy Alive”; acknowledges that it is Scotland’s only national provider of hospice care for babies, children and young people; recognises that it offers palliative, respite and end-of-life care across Scotland through its service, CHAS at Home, and at its hospices, Rachel House in Kinross and Robin House in Balloch; acknowledges that it works in partnership with the NHS, local authorities, charity partners, government agencies and many others to provide the highest quality joined-up care and support; recognises what it sees as the scale of need for these vital services, with nearly 16,000 children and young people currently living with life-shortening conditions; appreciates the continued commitment of CHAS and the wider paediatric palliative care sector in Scotland, and commends all of CHAS’s staff and volunteers on “Keeping the Joy Alive” for the children and families that they support and care for.

17:08  

I thank members from across the chamber who supported my motion and allowed this debate to take place, and I warmly welcome to Parliament the CHAS staff, supporters and volunteers who have joined us in the public gallery this evening, ahead of CHAS’s annual reception, which will be held in the garden lobby after the debate.

I pay tribute to each and every one of CHAS’s staff and volunteers for the massive contribution that they make to the provision of world-class levels of care and support to babies, children and young people with life-shortening conditions across our country. [Applause.] We owe them a debt of gratitude for what they do for our constituents and for the families that we represent here in Parliament.

CHAS works across the whole of Scotland. Its two hospices, at Robin house in Balloch and at Rachel house in Kinross, are centres of excellence in care that provide both respite and end-of-life care and support. Having previously visited Rachel house on a number of occasions, I was delighted to visit Robin house with my colleague, Maurice Corry, last month. It was a great honour to meet the staff there and see the huge difference that they make for families.

As I was writing my speech for tonight’s debate, I was thinking about what word could describe Robin house and Rachel house, and I do not really think that I can come up with one. I could, perhaps, use “haven” or “oasis”, but those words simply do not do the hospices justice. They are special and magical places, and Scotland should be immensely proud that we, as a nation, have an organisation such as CHAS that provides such support in such beautiful and state-of-the-art facilities.

Last year alone, Robin house and Rachel house were able to provide more than 12,200 overnight stays for children and families, while the CHAS at home team provided care and support in homes across all regions of Scotland, including our remote, rural and island communities, with bases in Inverness, Aberdeen, Balloch and Kinross. CHAS also has specialist teams in hospitals across Scotland, with dedicated consultants, nurses and CHAS Diana children’s nurses who deliver care in Glasgow, Edinburgh, Aberdeen and Inverness. Here in my region of Lothian, CHAS makes a huge contribution to local families through supporting neonatal memory making at the Simpson centre, as well as part funding a consultant neonatologist who is based there.

CHAS has formed a major new partnership with the Royal hospital for children in Glasgow, whose new paediatric supportive and palliative care team is now entirely funded by CHAS. Two specialist nurses work alongside a consultant in paediatric palliative medicine to share specialist knowledge and improve care for children who—sadly—are likely to die young. They also work to ensure that the intensive support that their families need is provided. Their aim is to ensure that children who have palliative care needs, and their families, experience consistently high-quality care and support.

As my motion states, the number of babies, children and young people in Scotland who are aged between zero and 21 and who have life-shortening conditions is currently almost 16,000, and that number is increasing. CHAS already supports more than 465 of those babies and children, which represents a 25 per cent increase over the past five years. For every child who CHAS sees, it supports—on average—a further five family members as well.

Last year, CHAS’s at home service made 1,205 visits, which represents a 30 per cent increase over the past five years. CHAS also provided support to 84 families whose babies, children or young people sadly died last year. CHAS’s 864 volunteers donated an incredible 59,310 hours to the children and families who they supported, and the fantastic team of supporters and voluntary fundraisers raised a remarkable £8.7 million last year.

I want to briefly highlight the outstanding fundraising work of those who are behind Edinburgh’s capital sci fi con, whose volunteer cosplayers—led by Keith Armour—donate all the profits from their events to CHAS. Since 2015, they have collectively raised more than £250,000 for CHAS, which—as all members will agree—is a fantastic achievement. For every £1 of statutory funding that is given to help support the services that CHAS provides, the estimated economic return on that investment is £5.12, which is an indication of just how much value CHAS provides.

If there is one thing that I know that members across the chamber will agree on, it is that CHAS does not ever rest on its laurels but is continuously developing new ideas and initiatives to help young people and their families across Scotland. Its new home volunteer service sees volunteers visit ill children at home, and volunteers made 115 home visits in the first year of the service alone. I was really impressed to hear of the plans that CHAS has to expand that service.

CHAS also focuses on providing support to the siblings of children who have life-limiting conditions, and its support has been invaluable to dozens of brothers and sisters of seriously ill children across our country.

I close this evening’s debate by thanking, again, all those who work and volunteer for CHAS for everything that they do to support families across our country. Their contribution to individuals who are in need, and to the wider palliative care sector in our country, can never be overestimated. They really do help to keep the joy alive for a huge number of people and families who are going through the most difficult of times.

So, on behalf of the whole Scottish Parliament—thank you. I look forward to the rest of the debate.

17:14  

I commend Miles Briggs for bringing the motion to the chamber for debate. I am delighted to be able to make a small contribution and to express my admiration and gratitude to everyone at CHAS for all that they do to keep the joy alive, for both children and young people with life-shortening conditions and their families.

CHAS works with people right across Scotland, which is absolutely fantastic. It also works closely with national health service colleagues and in our communities. In the summer, I had the great privilege of visiting Robin house to find out more about the work that its staff and volunteers do and about the experiences of children and young people there. In my area of Lanarkshire, CHAS has directly supported 33 children and young people and their families in the past year alone, so its impact is significant. That is not just because of what is provided at Robin house and Rachel house, but because of the CHAS at home service—which a lot of people do not know about—and the respite and end-of-life care that is provided in hospices, which is so important.

Other members will probably talk about their own visits to Robin house and Rachel house, but I would like to mention mine. When I was at Robin house I was bowled over by how homely, colourful and welcoming it was, and I enjoyed a lovely meal with staff and volunteers. The facilities ranged from a large hydrotherapy pool to beautiful gardens, which are accessible by everyone, and there were opportunities to play, have fun, relax or have quiet time if that should be needed. I was especially moved by the areas that are provided for reflection, the support that is offered for bereavement and the care that is given. It is simply a place that is filled with love.

People who give donations to CHAS might wonder where their money goes. The rainbow room is probably a very good example to illustrate that. Families can use the facilities in that room in the hospice from the day on which a child dies until the day of their funeral. CHAS needs more than £2 million a year to keep Robin house operational—that is over and above the statutory funding that comes from the Scottish Government—so it takes a lot of time, effort and money to provide those services. CHAS cannot do that without its more than 100 active volunteers who do amazing, fantastic work. The debate is therefore an opportunity for all of us in the chamber to say a big thank you to them. A reception will also be held tonight in the garden lobby, which I am sure will be well attended.

When I go home at night, I am now greeted by a beautiful and colourful plant pot with my name on it, which was a gift from the team at CHAS. It is lovely to see it there. Presiding Officer, I do not have a great track record with plants, but I do my best to look after the pot. When I come home from what are often busy, long and stressful days, it is lovely to see it, because it reminds me of the joy and the magic at CHAS. I therefore want to say my own big thank you to the team at CHAS.

I know that the organisation has a lot of supporters across the chamber, but there is always more that we can do. I remember that when I was preparing to lodge a motion during children’s hospice week, I read that quite a lot of people in Scotland do not really know what such hospices do. There is a lot more that we can do to raise awareness and to ensure that the excellent data that we have in Scotland, which is probably the best in the world—I am getting some nods from people in the public gallery—is used to maximum effect. We must ensure that, across the NHS and in the community, we know exactly what children and young people with life-shortening illnesses need and that the Parliament continues to be a champion for CHAS. [Applause.]

I say to those in the public gallery that I know why they are clapping, but we do not permit it. If they would kindly desist, that would be absolutely dandy.

17:19  

I, too, am very pleased to be called to speak in the debate and I congratulate Miles Briggs on securing it.

I pay tribute to CHAS’s staff and volunteers, who do a remarkable job and deserve our heartfelt thanks. It is worth noting again the quite remarkable statistic that it currently has 864 volunteers who have donated around 59,310 hours to the children and families across Scotland who are supported by it.

I also pay tribute to all those who fundraise for CHAS the length and breadth of the country and at all times of the year. For example, just recently, in my constituency of Cowdenbeath, there was a show in Crossgates where we saw Cowdenbeath band the Sunset Spirit playing and donating their time for CHAS, so well done to them. Indeed, it is difficult to think of a charitable organisation that inspires such determined and loyal fundraising and which is so universally supported by the generosity of the public.

CHAS has developed and evolved over the years and it now has hospices in Kinross and Balloch. At the same time, we have seen CHAS develop its CHAS at home outreach service, which has seen volunteers make, as has been mentioned, some 1,205 home visits in the past year. As has also been mentioned tonight, CHAS has established a presence in hospitals and its staff now work within hospital neonatal units in Edinburgh and Glasgow. CHAS has developed a new children’s consultant post in NHS Grampian and expanded its network of CHAS Diana children’s nurses, with new posts based in Aberdeen and Inverness. I welcome the groundbreaking partnership of paediatric, supportive and palliative care that has seen a team established at the Royal hospital for children in Glasgow, providing direct care and building links with other CHAS services.

Those developments very much fit with CHAS’s overarching ambition as set out in its current three-year strategic plan, which is to reach every family in Scotland that needs it. That is—rightly—an ambitious target, but it is one that I whole-heartedly support. As is shown by testament after testament, it is beyond doubt that the services that CHAS provides to families are pivotal to their being able to cope and having the opportunity to capture the irreplaceable moments with their child.

Respite care is vital for families, and the focus on siblings and the stresses and pain that they go through is a key part of the service that CHAS provides. That recognition of the difficulties that siblings face is important, as they may struggle within the family as well as at school, and they may feel quite alone. Having someone with whom they can talk things through and the opportunity to meet up with other young people who are in the same position is extremely important. In that regard, I am pleased to note that CHAS recently put out a call to arms to high schools, including in my constituency of Cowdenbeath, asking pupils in the senior years to consider becoming volunteers. That is a commendable initiative and I am happy to help to raise awareness of it this evening.

As a member who represents a Fife constituency, I was pleased to see that, in Fife, a care 24 team has been established in partnership with NHS Fife to support families with overnight care at the end of life of a child. The CHAS at home service is also operational in Fife, and a medical partnership is in operation with NHS Fife.

Many other initiatives are under way, but time constraints do not permit a detailed examination of them tonight. Suffice it to say that CHAS continues to evolve and innovate for the benefit of thousands of children and families across Scotland. The organisation has been going in its current form for only about 25 years, but its stature is such that it is difficult, if not impossible, to imagine life in Scotland without it.

The title of tonight’s debate is “CHAS, Keeping the Joy Alive”. The hard work of staff and volunteers ensures that CHAS does exactly that, and in the most unbearable of circumstances. We are all in its debt.

17:23  

I, too, thank Miles Briggs for securing this debate.

In April 2018, I was fortunate enough to receive an invitation to visit Robin house in Balloch. I was aware of the work of CHAS and—like most people, probably—I was apprehensive about going to a children’s hospice. The word “hospice” can evoke sad and negative thoughts. However, I could not have been more wrong. The first impression that strikes a visitor when they arrive at Robin house is the setting. It is calm, quiet and surrounded by peaceful countryside. Inside the house, as it is known, is a warm, loving, colourful and positive environment. Families support their loved ones 24/7. To have that respite support, whether it is planned or emergency, is essential for families with children who have life-limiting conditions to function.

The hospice provides space for a family to be just that—a family. CHAS offers a sense of normality. Such care and detail goes into the preparation for the family’s stay. From having the child’s favourite character duvet cover to the toy they have favoured in previous visits, with family photographs adorning the bedroom walls, there is a real sense of home.

Parent carers and siblings are not forgotten. There are quiet family rooms of hotel standard looking out into the countryside. Every detail is thought through, and with the knowledge that there are medical professionals with them, family members can have a proper night’s sleep. They can relax, rest and mentally switch off.

Making memories is a high priority for the families of children who have life-limiting conditions and essential for their healing when that inevitable time comes. Specially adapted therapy rooms are included in Robin house. There is a state-of-the-art music room, the biggest hydrotherapy pool I have ever seen, a messy play room, and the all-important sensory room. These are experiences that cannot be offered at home.

Such state-of-the-art facilities lead to significant costs. CHAS relies heavily on public support to maintain its work. Essential funds must be raised continuously to allow both its houses to function.

I also learned the importance of volunteering for both CHAS houses. The volunteer gardeners, the chefs, the play therapists, and the holistic counsellors all willingly give their personal time to make each family’s stay at the houses a special experience.

Reflecting on my afternoon at Robin house, I am reminded that making the most of short and precious lives is paramount, and it is that, above all, that is important to each and every family and, equally, to the staff members and volunteers of CHAS. Families are safe in the knowledge that they will be supported through what will be the darkest moments of their lives.

I finish by quoting a parent. Lorna Cobbett, mum to Essie Victoria, said:

“Hospices are not hospitals and for some families they are a second home. They are there to support families and to make memories; to be a shoulder to cry on as you navigate an impossible path. We need to remove the fear and show how much they are places that are full of life.”

17:27  

I also congratulate my colleague Miles Briggs on bringing the debate to the chamber and allowing us to talk warmly about the work that CHAS does.

I had previously been aware of CHAS for quite some time, although at quite a superficial level. We used to run charity golf days at which we would get a patient along and play a celebrity golf game, meet friends and have a bacon roll and a good chat with the lads. Part of that process was getting a two or three-minute presentation during the day at which somebody from CHAS would let us know what the charity does. We would always say, “What a fantastic charity. That is great. We are happy to support that,” and we would go off home.

It is only when I came into this role that I got the opportunity to dig a little bit deeper into what charities such as CHAS do. I have had the pleasure of visiting Robin house, and it is only when you walk through that building that you get a sense of the importance of the service that it delivers to the people who use it. To those of us who are parents or, as in my case, grandparents, the situation that the parents and families at CHAS have found themselves in is unimaginable.

We might imagine the building to feel like a dark place, but it is so bright. Everybody has talked about the hydrotherapy pool, the colours on the walls, the paintings, the playing, the music and the incredible garden. It is such a fantastic place for people to be at such a time.

Mary Fee recently hosted an event in the Scottish Parliament’s garden lobby for people and organisations who work with families who have lost young people, such as Sands.

I have been to the CHAS butterfly release events a couple of times. I found that difficult to do, but it is very worthwhile to be in a room with people who are celebrating the lives of the children whom they have lost. Reading out something that people have written for you to read out in front of them is incredibly difficult. Releasing a butterfly in the garden to try to keep those memories alive is moving and important.

The work that is done by staff and volunteers at hospices is utterly vital and often hugely challenging. Supporting someone as their health declines and they enter the last days of their life can take a real toll, never more so than when palliative care is needed by the young. All deaths are tragic, but perhaps none more so than the death of someone who has not had much time to experience life.

Miles Briggs’s motion talks about CHAS’s mission of keeping the joy alive, and from my experience of visiting Robin house, I have seen how hard people work to bring joy to everyone who comes through the doors. We talk about making people with life-shortening conditions comfortable in their final days. In most cases, that is about making someone physically comfortable: treating their symptoms and managing their pain. Sometimes, we do not think enough about the mental comfort of people with life-shortening conditions and their families. That is why CHAS’s mission to keep the joy alive is so important. When we are going through something painful, moments of joy and fun are at their most precious and can make the most difference, with that sense of hope and that little reminder that, even when things feel unendingly dark, there can still be light.

I again thank Miles Briggs for bringing this debate to the chamber and allowing us to thank CHAS and other charities that support those in such difficulties in communities. To all the staff and volunteers who work for CHAS, I pass on our continued admiration and support and look forward to visiting them again soon. “Keeping the Joy Alive” is a very apt title for this debate.

17:32  

I congratulate Miles Briggs on securing this debate. I am very proud that Robin house is in my constituency, and I am always happy when colleagues come to visit my beautiful patch.

The motto that CHAS has at the core of its mission—keeping the joy alive—perfectly sums up the incredible work that it carries out day in, day out. The exceptional levels of care and support that staff and volunteers at those hospices provide to the children and young people, and to family members, really is second to none.

I know from my visits to Robin house that families value the support that they receive at what can be an incredibly difficult time. Many of the children have quite severe life-limiting conditions and we can only begin to imagine the impact that that has on their families. However, as many members have said, it would be a mistake to think of Robin house as a sad place. It is quite the opposite; the minute that people walk through the door, they hear peals of laughter. It is bright and positively bursting with energy and joy. The staff and volunteers create that culture, which is wonderful to experience.

For 25 years now, CHAS has supported babies, children and young people with end-of-life care, emotional and physical therapy and education about the life-shortening illnesses that they have. It has not always been easy; there have been funding problems in the past, which are now more settled. CHAS is moving forward, though those problems are not quite behind them—it could always do with more money.

As Miles Briggs pointed out, there are currently 16,000 babies, children and young people in Scotland who are living with life-shortening conditions. The facilities that are on offer to those children at Robin house, and Rachel house in Kinross, make all the difference for them and their families.

Let me mention, as other members have done, the specialist swimming pool at Robin house. It is a wonderfully sauna-like environment—very warm and cosy—and it resounds to the splashes of children playing in a pool that is suited to their needs, with relaxing physiotherapy and stunning views across the countryside and the garden.

The garden at Robin house is fantastic. Mary Fee has covered many of the services that are available there, but I want to focus on the garden. The previous time that I visited, I planted trees and bushes with Patrick Harvie, who is not in the chamber this afternoon. His mum, Rose, volunteers at Robin house, so he was press-ganged into going along. We had typically Scottish weather—it was a little bit damp, but we are hardy souls. It really did not matter, because it is such a fabulous, colourful space in which children and, dare I say, adults can roam free and have adventures, whether in the pirate ship or getting lost in the jungle of the garden. When I think of the garden, I think of laughter, fun, serenity and safety. We just need to work on the sunshine.

I give a big shout out to Maggie, who is responsible for the garden, and to the army of volunteers who support her in her work. Indeed, our thanks go to all the volunteers, staff and trustees.

I remember when CHAS decided to establish a hospice at Robin house. We had a little local difficulty with planning, but we overcame that obstacle. All I can think of is the extent to which my constituents in Dumbarton, the Vale of Leven and Helensburgh went into fundraising overdrive. I have never been to so many bake sales and tombolas, donated so many bottles of Scottish Parliament whisky or sponsored so many people in my life, but it was all for a great cause.

The fundraising continues, and the chief executive of West Dunbartonshire Council, Joyce White, is about to trek across the Sahara for CHAS. I encourage members to sponsor her. Less kind people are hoping that she stays there for a while, but I would not dream of saying that.

Whether through the hospices in Balloch and Kinross or the home care service, CHAS’s valued support and care reaches every corner of the country, and for every child that CHAS cares for, it supports a further five family members. I cannot commend highly enough the work that CHAS does—it truly keeps the joy alive.

17:37  

On behalf of the Scottish Government, I add my welcome to colleagues from CHAS and some of the families who are supported by CHAS, who are in the public gallery this afternoon. I congratulate Miles Briggs on securing the debate, and I thank him and colleagues around the chamber for their thoughtful and considered contributions to the debate.

CHAS fulfils a unique role in supporting children and young people with life-limiting conditions and the families and friends who are around them. We have heard from members about the difference that CHAS has made to their constituents and how CHAS has kept the joy alive for families when they have felt at their lowest.

At the start of the debate, Miles Briggs said that he was trying to find a word to describe Rachel house and Robin house. My colleague Maree Todd, the children’s minister, who has not been able to stay for the debate, passed a note to me setting out her thoughts on an appropriate word to describe the hospices and CHAS in general. The word she chose is “joy”. She writes that, when she visited, she

“expected to find compassion, empathy and incredible expertise.”

She found those, of course, but she did not expect to find “fun” and spend her time “playing and singing.” She sums up the experience as “pure joy”.

I will remind members of some of the comments that were made in the debate. Miles Briggs talked about a sense of home and the hospices being a haven, while Brian Whittle talked about them being bright. All members used positive language and words such as “bright” and “joyous”, which is important.

It is also important to remember CHAS’s purpose. Brian Whittle expressed how moving and emotional the stories and case stories that CHAS has shared with us are. I thank the individuals concerned for allowing CHAS to share those stories, because they give us a fuller sense of how important CHAS’s work is. The amazing staff and volunteers provide a breadth of support in a compassionate way. Others in the chamber have thanked the volunteers, and I add my thanks.

While the minister was speaking, I was reminded of conversations that I had during my visit to Robin house. One of the issues that has stayed with me is the financial impact that a life-shortening condition has on a family, particularly if they are on a low income. Health inequality is a big issue in Scotland. Can the Government do more work with CHAS to find out how we can maximise income for families in that situation, to make sure that they have access to all the support and advice that they need?

We have a good relationship with CHAS. We work with CHAS as partners, and that is a good way to continue working. Government officials and CHAS frequently get around the table to make sure that we are doing everything that we can to complement each other’s role and to find out what we can add to that area.

The type of skilled, compassionate care that CHAS delivers is now more important than ever. As “Children in Scotland requiring Palliative Care: identifying numbers and needs (The ChiSP Study)” notes, the demand for such services is increasing, particularly in deprived areas. That brings me to Monica Lennon’s point. As she mentioned, the data that CHAS produced is recognised as some of the best-quality data in the world. It is important that we have that kind of data, so that we can have those conversations. Again, I thank CHAS for producing it.

However, 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 number of specialist staff, we are continuing to improve access to services and, through our programme of health and social care integration, we are putting services under the control of local communities. Nevertheless, as CHAS reflected in its briefing, we can always do more.

Our “Strategic Framework for Action on Palliative and End of Life Care 2016-2021”, which was published in December 2015, included a much-needed commitment to support and promote the further development of holistic palliative care for the 0-to-25-years age group. Since the publication of the framework, we have undertaken more work to improve the care that is available for young people with palliative care needs and their families. We remain committed to ensuring that everyone who needs palliative care will be able to access it by the end of this parliamentary session.

That is why we have focused particularly on specialist children’s palliative care services. In 2017, we announced an investment in children’s palliative care of £30 million over five years, up until 2021.·CHAS welcomed that investment, which has been helpful in expanding children’s palliative care services to ensure that all families, regardless of where they live, have access to high-quality palliative and end-of-life care.

Members will be aware that, earlier this year, we also launched the paediatric end-of-life care national managed clinical network—PELiCaN. Hosted by NHS National Services Scotland, that network is designed to improve access to high-quality, person-centred and family-led end-of-life care for babies, children and young people with a life-limiting condition who are unstable, deteriorating or dying. CHAS has long supported the idea of the network and, from the outset, has worked closely with Scottish Government officials and NHS NSS to shape the work to ensure that it meets the needs of children and families across Scotland. Thanks in no small part to the work of CHAS, the network is now in place, and recruitment for key clinical positions has commenced. I look forward to seeing how the work progresses over the coming months.

Although PELiCaN will be helpful in linking clinical services and sharing learning across the country, we still need services to work in partnership with each other to provide high-quality care and support. To achieve that vision, it is essential that we create the right conditions nationally to support local communities in their planning and delivery of services, to ensure that the needs of local communities are best met. 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 CHAS to plan and commission services that are designed to meet the needs of their local communities. By commissioning services in that way, service improvements will be driven through meaningful collaborative partnerships with the wider palliative and end-of-life care community. Annabel Ewing mentioned how important those partnerships are to success.

CHAS is already engaging with integration authorities and is working in partnership with the health, social care and voluntary sectors to make the most of every opportunity to improve delivery of and access to children’s palliative care across Scotland. In short, CHAS’s work is a great example of the principles of health and social care integration in practice. I am grateful to CHAS for its invaluable work, and I am optimistic that, through our combined efforts and continued partnership working, we will bring about further improvements in children’s palliative and end-of-life care. CHAS aims to ensure that every baby, child and young person who needs palliative care, wherever they are, can access it where and when they need it. I am sure we all share that aim, and I look forward to working with CHAS and others around the chamber for many years to come.

Meeting closed at 17:46.