Meeting of the Parliament

Meeting date: Thursday, September 15, 2016

Official Report 885KB pdf

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Glow Gold September

The next item of business is a members’ business debate on motion S5M-0860, in the name of Jeremy Balfour, on glow gold September. The debate will be concluded without any question being put.

Motion debated,

That the Parliament recognises the work of the childhood cancer awareness raising campaign, Glow Gold September, which has been established by the parents of children with the condition; notes that it aims to ensure that the colour gold becomes synonymous with childhood cancer and that its awareness month is September; understands that it is asking for national and international buildings and landmarks to be illuminated in that colour for either the evening of 1 September 2016 or, if possible, for the whole month from dusk till dawn; believes that Edinburgh Castle, St Andrew’s House and the Kelpies will take part in this and that the campaign is encouraging others to do likewise, and further understands that the campaign is also urging people to wear a gold pin throughout September to raise awareness and to show their support for the children.

12:46  

I thank all the members from different parties who supported the motion in my name. I welcome some of the members of the glow gold Scotland team to the Parliament today—they are sitting in the public gallery to listen to the debate. I congratulate them on all that they have done in the past few months. The glow gold Scotland campaign was set up only in February of this year. The purpose of the campaign is to highlight and raise awareness of childhood cancer.

When I was growing up, cancer was a word that people were reluctant to use. However, over the past few years, charities working in the sector, Governments of all parties and the media have raised awareness of cancer in Scotland, and people are far more willing to talk about it. Sadly, however, the same cannot be said for childhood cancer. Too often, people do not want to talk about it or are scared to think about it. The glow gold Scotland team came together to raise awareness of the issue and have persuaded many charities and others to come together to make this month the month when we remember and raise awareness of childhood cancer.

At the start of the month, many buildings across Scotland were lit up in gold as a memorial to children who, sadly, have died from cancer—the castle and the Royal College of Physicians building in Edinburgh, the Ness bridge in Inverness, the Custom House in Stranraer and the Falkirk wheel, to name a few. Also in Edinburgh, Lothian Buses painted a bus gold and used it to take people around the city to show them the buildings that had been lit up. Glow gold Scotland is a remarkable campaign that is run by a small number of volunteers, and I am sure that it will grow in strength over the next few years.

Cancer is rare in children in Scotland, but it is still the biggest cause of death in children under 16 in the United Kingdom. Around 130 children under the age of 14—and around 60 children under the age of five—are diagnosed with cancer in Scotland every year. However, the survival rate is improving: three quarters of children who are diagnosed with cancer in the UK now survive more than 10 years after the diagnosis, compared with only a third in the 1970s.

However, there is still a need to raise awareness about what cancer does and how it comes about. Both when a child is born and as the child grows up, parents need to be given more information about childhood cancer. As many of us are aware, lots of information is given to parents about the different conditions and issues that might face their child, but my understanding is that little, if any, information is given about childhood cancer. That needs to change. Appropriate information must be given—and not just to parents but to general practitioners. Cancer is rare and GPs can often be slow to diagnose it because they think that it is some other condition. More training needs to be given, not just to doctors who are training to be GPs but to those who are in GP practices, to remind them of what to look for.

Children’s cancers are biologically very different from adult cancers. Cancer normally affects older people because of the genetic errors that come about in healthy cells. Sadly, acute leukaemia is the most commonly diagnosed cancer in children, and brain tumours and cancers of the spinal cord account for around a quarter of children’s cancers. However, the number of children surviving cancer has improved, and more research needs to be done on those children and the effect that cancer has on them later in life.

There has been huge progress in the genetic understanding of children’s cancers, and technology has improved. However, we—as a Parliament and as a nation—need to commit to giving more funding to charities that are looking at the issue. We cannot simply concentrate on adult cancer and forget about children’s cancer.

A couple of Fridays ago, I was honoured to attend a dinner organised by a family who lost their first child to cancer. The child was born with a tumour and, sadly, died after just a few months. Following that tragedy and sadness, the family has gone on to raise a fantastic amount of money. The money is given to support families throughout Scotland and, just as important, it is funding two PhDs into the issue. For the next four years, the family is committed to raising money so that one PhD student can complete further studies into childhood cancer. There are only a small number of cases of children’s cancer, so medicines need more testing and clinical research is harder. Often, medicines that are used in adult cancers simply do not work effectively for children under 16.

To lose a child is the worst thing that a parent can ever go through. To lose a child to cancer often brings about turmoil and hardship within the whole family. A mother or father sees their child suffer and knows that they can do nothing about it. That suffering can go on for months, if not years. We need to raise awareness so that cancer can be diagnosed as early as possible.

At the dinner that I referred to, a consultant at the Royal hospital for sick children inspired me and all those in the room through the commitment—emotional and intellectual—that is given here in Scotland. It is an example to us all.

More research needs to be done and awareness of the issue in Scotland needs to be raised. I am sure that, over the next few years, more and more people will become aware of not just the campaign but, more important, the issue behind it.

12:54  

I congratulate Jeremy Balfour on securing the debate.

As we know, September is childhood cancer awareness month. It is a particularly poignant time as, just weeks prior to September, children go back to school after a fun summer. Other young children start school for the first time. At every school gate, parents wave their kids off to school on their first day, and social media is full of pictures of proud children and parents. It certainly is a wonderful day for most families but, unfortunately, not for others. Just under 12 children are diagnosed with childhood cancer every day, so many families will have a very different start to the school year. Of those 12 children diagnosed every day, three will die.

Today, childhood cancer remains, after accidental injury, the biggest killer of children and young adults. The eye-opening statistic is that one in every 285 children and young people will be diagnosed with cancer before their 20th birthday. However, in the past 20 years, only three medications have been licensed for childhood cancer, whereas in the past five years more than 80 medications have been licensed for adult cancers. That gives an idea of the void in research funding that childhood cancer faces and is the reason why the new glow gold September awareness campaign for childhood cancer was started this year.

That growing campaign works to encourage iconic buildings globally to light up in gold as part of childhood cancer awareness month, to support awareness of childhood cancer. It is a grass-roots campaign that is having a global impact. I have been remarkably impressed by how many major landmarks are lighting up around the world, including the Beacon arts centre, the Victoria tower and the custom house in my constituency.

There is an inspirational story in my constituency of Greenock and Inverclyde involving Gillian Mowat, who is running a campaign and appealing to the whole of Inverclyde to light up gold in September as a visible show of support for all childhood cancer patients. Gillian and her husband Paul were devastated when their son Nathan was diagnosed with acute lymphoblastic leukaemia just before his fourth birthday. Nathan immediately had to undergo life-saving chemotherapy treatment and spent weeks in hospital. Since then, he has undergone hours of chemotherapy treatment to blast the cancerous cells and faces another two years of maintenance treatment. As a result, he has no way of fighting infections and has to be rushed to hospital if he has any spike in temperature. Even a cold could have devastating consequences for him, so everything needs to be monitored.

Gillian’s bravery throughout has been apparent. She has spoken candidly about the impact that Nathan’s fight has had on family life and especially on her three-year-old daughter, Annabel. Gillian touched the hearts of the people of Inverclyde when she spoke about their ordeal after little Nathan was diagnosed with the disease. The community has been 100 per cent behind Gillian’s campaign, and Greenock Morton Football Club invited Nathan to be a mascot for the last game of the season in May, when fans held up cards to show their support for the glow gold campaign. As I said, the Beacon arts centre on the Greenock waterfront shone gold on 1 September—I was at the launch that evening. I am proud to support Inverclyde mother Gillian Mowat, her son Nathan and her family, as well as the wider glow gold campaign, and I thank them personally for doing such great work in highlighting the issue of childhood cancer to the wider public.

Although the number of children surviving cancer has improved, it is crucial that we research the long-term effects of the treatments on their health and wellbeing. A recent study showed that, although many survivors of childhood cancer have healthy lives, a number of children face long-term health issues such as disability and reduced immunity. Huge progress is being made in the genetic understanding of children’s cancers, in advances in technology, which Jeremy Balfour touched on, and in the development of personalised medicine.

Children are our future. They need us to fight for them as they are not yet old enough to fight for themselves. They are the doctors, teachers and scientists of the future, so we all need to do our bit to give them the chance that they deserve. I support the glow gold campaign and the calls for increased funding for research into childhood cancer.

12:59  

I am grateful for the opportunity to speak in support of the motion brought forward by my colleague Jeremy Balfour, on what is a very emotive topic.

Cancer has to be one of the scariest words in the language. To be diagnosed with cancer has to be every person’s nightmare, and to hear that a loved one has that terrible condition is something that too many of us have had to endure. We are certainly not alone in having to deal with the shock of family members or friends being diagnosed with cancer, but to be told that your child has cancer or has been born with cancer is a burden that none of us can contemplate bearing, and we hope that we never have to.

Several times in the chamber recently, I have advocated the need for us to focus more on preventable disease. Most members will know of my belief that encouraging an active healthy lifestyle through education will go a long way towards tackling the majority of Scotland’s health issues and relieve some of the pressure on our health service.

However, although there is strong evidence that having an active healthy lifestyle can in some cases help to prevent certain types of cancer, and most certainly helps in the treatment of and rehabilitation following cancer, there is a long way to go before we understand the causes of early childhood cancers and the potential early indicators. I recognise the distinction that has to be made: that distinction is important as we endeavour to support patients and their families during what is a difficult time.

Although there is no understanding of why anyone has to face cancer, importantly, the really positive news is that, with research funded by the likes of charities and universities, cancer survival rates continue to grow, and there is a real ambition to eventually eradicate cancer deaths. Once the initial shock of diagnosis subsides, the recognition of the success rates that modern treatments can give must allow a certain comfort and the knowledge that the diagnosis is not the likely sentence that it used to be.

That said, it is crucial that the work on cancer treatments and prevention continues at pace if we are to realise the dream of 100 per cent rehabilitation from a cancer diagnosis. There are some amazing people out there doing incredible work, and we must keep their efforts at the forefronts of our minds. From people seeking sponsorship for fun runs and events—for clarity, I note that I am not volunteering myself here; I think that the fallout in terms of the cost to the NHS would be more than I could raise—to the issue being raised today in the Scottish Parliament, we will endeavour both to highlight the work that is being done in seeking a cancer cure and help to maintain the spotlight on that work until the day that the word “cancer” no longer holds the dread that it once held.

I am delighted to support the motion and to bring continued publicity to the glow gold September campaign and the continuing work in the field.

13:02  

I congratulate Jeremy Balfour on lodging his motion and bringing the subject to the chamber for debate. I pay tribute to all the campaigners and the organisers of the glow gold campaign and thank them for their hard work and efforts in highlighting this really important cause.

I welcome the opportunity to speak not just in support of the glow gold awareness campaign but on the issue of childhood cancer. In recent years, we have seen the development of campaigns that have really touched people’s consciousness in their everyday lives. The pink ribbon campaign on breast cancer, Macmillan’s coffee mornings and world AIDS day are just a few examples. I hope that seeing iconic Scottish landmarks such as the Kelpies and Edinburgh castle glowing gold will similarly place at the forefront of our minds the issue of childhood cancer.

Every year, around 1,600 children across the UK are diagnosed with some form of cancer. That is 1,600 children and their families living every day with the consequences of a cancer diagnosis. Five children are diagnosed with cancer every day. That is one in every 500 children up to the age of 14. While cancer is mercifully relatively rare, it is still the biggest cause of death of children in the UK.

As a parent, I can only imagine the emotions and challenges that families go through in those really difficult circumstances. It cannot be easy. That is why we have to do what we can to help. It is vital that children get the clinical support that they need but, as we heard so powerfully at First Minister’s question time, there is a postcode lottery on access to new medicines, and that also exists in Scotland for children with cancer. Access to innovative medicines is a key issue and one that the Scottish Government has to address. We all have a responsibility to address that.

It is also important for the families to get emotional support. It is easy just to think of the patient, but there is also an impact on siblings, parents and the wider family. A big part of that support is showing people that others are in their corner and are fighting to highlight the issue and raise awareness more widely. The sight of the magnificent Edinburgh castle or the Kelpies glowing gold in support of childhood cancer awareness will send to the affected families a powerful message that we are with them as they face this terrible disease. Indeed, the debate highlights the importance that we place on the issue.

We hope that increased public awareness will be followed by greater resources for research into better and more effective medical treatments. Given that children’s cancer risk factors are not well understood, in part because it is thankfully a relatively rare and diverse group of cancers, increased research into causes and treatment is essential—research that I hope one day will help rid us of this terrible disease.

I am surprised that our fellow parliamentarian Jeremy Balfour did not use the opportunity of the debate to make a direct request for us to have the Parliament glow gold. I am putting that request to you directly, Deputy Presiding Officer, and I hope that you will take that up with the Scottish Parliamentary Corporate Body. Perhaps we can do that as part of next year’s campaign, so that the Parliament can send a signal to all those families that we take the issue very seriously.

We are all proud to wear our badge and to support the campaign. I again thank the campaigners for their incredible work. I hope that in my lifetime we can find a cure for this terrible condition.

13:06  

I, too, thank Jeremy Balfour for securing this debate during childhood cancer awareness month. I also thank the glow gold campaigners who are here in the Parliament.

Jeremy Balfour’s motion gives us an opportunity not just to acknowledge the great work done by volunteers to raise awareness but to pay tribute to the children and young people who are dealing with a diagnosis of cancer and to pay tribute to their families. I thank Stuart McMillan for raising the inspirational work of his constituent Gillian Mowat and the story of her son Nathan. I am sure that we all want Nathan to receive our very best wishes from across the Parliament chamber.

As members have said, cancer is thankfully rare in children and young people in Scotland: less than 1 per cent of cancers are diagnosed in children. However, any diagnosis of cancer is absolutely devastating and it seems particularly cruel when it is faced by the youngest in our society: our children.

Early diagnosis is critical with all cancers, regardless of age, and raising awareness is important to get to early diagnosis. That important point underpinned Jeremy Balfour’s speech. To support GPs to refer and diagnose cancer as early as possible, we commissioned a full review of the Scottish referral guidelines for suspected cancer. The review, which was led by Healthcare Improvement Scotland in 2014, led to the inclusion of specific guidelines for identifying suspected cancer in children, teenagers and young adults. The guidelines have been supported by the distribution of more than 16,000 copies of the quick reference guide, and in February this year an app was launched. I hope that that goes some way to reassure Jeremy Balfour and others that we are actively working on raising awareness among our GPs and we want to continue to improve it to ensure that, when parents present at a surgery, their concerns are acted on by a GP with a complete knowledge and understanding.

Diagnosis is only ever the first step, and cancer services need to ensure that the right treatment at the right time is delivered to every child, regardless of their diagnosis or location. In recognition of that, in 2011 we set up the managed service network for children and young people with cancer. As many members will know, the network is charged by the Scottish Government with bringing about improvements to the treatment, care and support of children and young people with cancer up to the age of 25. In February, it launched its second cancer plan, which has an ambitious programme of work for the next three years. I wish to recognise the good work that the network has achieved since its formation. It has brought together different members of the cancer community who have the same aim of ensuring that Scotland’s children get the best possible treatment and are at the heart of all their services.

We know that cancer poses a significant challenge for all of us, now and in the future, but there is good news: more people than ever before are surviving cancer. That is welcome, but we must always strive to do better. We want to be among the best in the world, which is why we have put in place our new cancer strategy.

“Beating Cancer: Ambition and Action”, which the Cabinet Secretary for Health and Sport launched earlier this year, will help us to meet some of those challenges. We have set out a range of ambitious actions to improve the prevention of cancer as well as detection, diagnosis, treatment and after care for people who are affected by cancer. The strategy is our blueprint for reducing health inequality, improving experiences of care and, ultimately, improving outcomes for people who have cancer.

We have backed up the strategy with investment of more than £100 million over the next five years, including funding of up to £2.5 million over that period to enable the managed service network for children and young people with cancer to lead on and deliver the improvements that are set out in its work plan.

The Cabinet Secretary for Health and Sport is due to meet the co-chairs of the managed service network next month to discuss progress and the network’s priorities for the next year. The network also works closely with third sector organisations in the area and children and families are represented on its board. The Government is always keen to ensure that the voices of children are heard at every level. That gives valuable insight into how cancer care is delivered across Scotland and how it should be delivered in future.

For instance, I am interested in how we support the siblings of children who have cancer. When I was first elected back in 2007, I met some survivors of childhood cancer and that meeting and the messages that I got from those people have stayed with me. I was moved by a presentation from someone who had lost his sister to cancer and his candid emotions of devastation at his sister’s diagnosis, the feelings of jealousy of his sister being given all the attention, the guilt he felt about that jealousy, the loneliness, the sadness and then the utter grief over his loss. We must be mindful of the need for a holistic look at the whole family when we are treating a child who has cancer. That point has been well made by Stuart McMillan, Jeremy Balfour and the other members who have contributed today.

I want to pick up on some of the points that Jeremy Balfour made about bereavement. We probably need to do a bit more in that area and we need to be a bit more open about how we talk about grief and loss.

Some of the discussion that we have had today underpins the need to ensure that the principles of getting it right for every child are understood by everybody who has a role in the care of our children. For example, that could be those who help with the education that is missed by some of the children who are undergoing treatment to get over their diagnosis.

Through our detect cancer early programme, we have also provided the Teenage Cancer Trust with funding to support and extend the charity’s work on delivering free cancer awareness sessions in schools, colleges and universities. The education programme provides information to encourage young people to give their older family members a nudge to make sure that they know about the benefits of early presentation.

I am pleased that, among the list of iconic buildings across Scotland that are glowing gold this month, the Scottish Government is playing its part, with St Andrews House and Victoria Quay being lit up gold to mark the campaign that we are here to celebrate and support today. I will wear my pin not just to raise awareness but to salute those brave children who are undergoing treatment as we speak. I and everyone here wish them all the very best on their journey. My thoughts are with them and their families.

I thank everyone who has participated in today’s debate, including Jeremy Balfour for raising the issue, Stuart McMillan, Brian Whittle and Anas Sarwar. Parliament is at its strongest when it unites behind a common goal and, in this case, it is about ensuring the very best for our children and raising awareness of cancer in childhood. We are also united in our support for the campaigners and their selfless work. I again thank Jeremy Balfour, everyone who is involved in raising awareness and everyone who has contributed positively and constructively to this unifying debate today.

13:14 Meeting suspended.  

14:30 On resuming—