Tackling Mesothelioma

– in the Scottish Parliament on 20th December 2016.

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Photo of Linda Fabiani Linda Fabiani Scottish National Party

The next item of business is a members’ business debate on motion S5M-02554, in the name of Kezia Dugdale, on tackling mesothelioma in Scotland. The debate will be concluded without any question being put.

Motion debated,

That the Parliament recognises the need to tackle mesothelioma, which is a cancerous disease linked to heavy use of asbestos in Scottish industries between the 1940s and mid-1970s; welcomes the publication of Mesothelioma UK’s five-year strategy,

Dedicated to Making Mesothelioma Matter

; notes the extraordinary work of support groups, campaigners, trade unions and charities in supporting those affected by mesothelioma in the Lothian region and across Scotland, and believes that, with Scottish Government support, Scotland can be a world leader in improving research, care and access to support for those affected by mesothelioma.

Photo of Kezia Dugdale Kezia Dugdale Labour

I am very grateful to all members who have decided to stay in the chamber to listen to or participate in this debate on how we tackle mesothelioma in Scotland.

Mesothelioma is, of course, a cancerous disease that is heavily linked to asbestos exposure. In its final stages, it leaves sufferers in a great deal of pain and with a feeling that they are suffocating to death.

My Labour colleagues will speak on behalf of many of the groups and individuals who have campaigned on the issue for a long time, but I will begin the debate by highlighting the efforts of one woman: Julie Roberts. I am delighted to say that she has joined us in the gallery with her friends and family, including her mother, Wilma.

I first became aware of Julie’s story through our mutual support of Hibernian Football Club. It was there that Julie told me of the terrible experience that her family had suffered at the hands of that deadly disease. Her father, Gordon, was a diehard Hibee. He was a season ticket holder in the upper west stand at the famous Easter Road. He was a joiner by trade and had worked for one of Edinburgh’s biggest housebuilding firms. It was during that time that tiny, deadly asbestos fibres, innocently inhaled, embedded themselves in the lining of his lungs and began slowly poisoning his body.

It was only after Gordon’s retirement that a shortness of breath became pronounced and a tiredness that had little to do with physical activity laid him flat. A secret visit to his general practitioner and a gamut of tests done without his family’s knowledge brought the answer: stage 3 mesothelioma, a cancer of the lungs.

Gordon’s devastated wife mentioned it to her brother, Jim. He had been a plumber in the city’s building trade for years. Suddenly, the pain in his back, which he had written off as a golf-swing problem, became more urgent. The tests were done, and like Gordon’s tests, they were positive.

In February last year, 68-year-old Jim died. On Easter Sunday, his brother, 69-year-old Gordon—Julie’s dad, a granddad and a lifelong Hibs fan—passed away at St Columba’s hospice. Both were killed by this devastating disease.

To Julie’s great credit, she wanted to ensure that others did not suffer as her father and uncle had suffered, so she fought back with her campaigning efforts. I thank her for sharing her story; I also thank the

Edinburgh Evening News and the

Sunday Mail

for highlighting it.

Scotland has the highest global incidence of mesothelioma, with 175 cases diagnosed in 2014. Because of our proud shipbuilding history—among many of our other industries—workers such as Gordon were, sadly, left with no idea that the materials that they were working with each day would plague their bodies in years to come.

Thankfully, we saw the use of different types of asbestos banned in the UK throughout the 1980s, with white asbestos finally banned in 1999. However, that came too late for too many people. A recent study showed that risks are particularly high for metal plate workers, mainly in—again—shipbuilding and carpentry, and the risk is higher for people who were exposed to asbestos before the age of 30.

The study estimated that a shocking 1 out of 17 British men born in the 1940s and employed in carpentry for more than 10 years before the age of 30 would go on to develop the deadly disease. People who worked as plumbers or mechanics also have an increased risk.

It was not just the men who were affected. There have even been tragic cases of wives and partners who died after breathing in asbestos fibres while washing their husband’s or partner’s clothes week after week.

Teachers, pupils and so many other people work in public buildings that are no doubt filled with asbestos. We need a plan to remove it from those buildings. The European Parliament has endorsed a 2028 deadline to eradicate asbestos, but we cannot wait. We should be the country that leads the way, especially with our record.

I was so moved by Julie’s story that I wanted to find out more information about what we are doing in Scotland to tackle the issue. The first place that I looked for information was the Scottish Government’s cancer strategy, published earlier this year. Sadly, I found that the word “mesothelioma” was not mentioned once.

I turned to what services NHS Scotland offers to patients. It shocked me to learn that NHS Scotland provides no dedicated mesothelioma services. It is just not good enough that a country such as ours, with a Government that so often talks about how much it is spending on our national health service, offers no specific services to people and families suffering at the hands of this awful disease. On top of that, I learned that mesothelioma is excluded from cancer waiting time targets. We must do more; we must do it fast.

What can we do? Last month, I was delighted to welcome a number of campaign groups and organisations to the Scottish Parliament to discuss what we can do to tackle mesothelioma. I was delighted that a range of people joined us that day, including Liz Darlison, the director of services and a nurse for Mesothelioma UK, the UK’s leading charity on the disease. I thank her for leading on the issue for a number of years. Liz was unable to join us today, much as she wanted to, as she is busy holding her clinic right now, working with patients and their families.

I also thank the Scottish Trades Union Congress for its support, and Scottish Hazards, which has been campaigning on workplace issues such as this for a long time. It is great to see so many of the faces from that day in the gallery this evening.

We can work alongside Mesothelioma UK as it conducts its next patient experience survey next year. That would allow it to analyse where it can target its resources to have the greatest impact on patients and their families.

Mesothelioma is the most symptomatic of all cancers in that patients often experience breathlessness, pain, cough, reduced appetite and malaise and, coupled with short life expectancy, that heightens the need to get care right. The pain can often be challenging. A procedure currently available only in Liverpool and Portsmouth can effectively manage pain: cordotomy. The team in Glasgow has the ability and will to perform it and to provide a service for Scotland. Meso UK has provided funding for equipment so that the team can get up and running, but it could do with long-term funding. Support for palliative care and pain management services should be built in.

Surgical treatment for mesothelioma is currently the subject of a national trial called mesothelioma and radical surgery 2, or MARS 2. However, no surgical centre in Scotland is involved in the project. I understand that there is differing medical opinion on surgical treatment, but the issue is being looked at in depth nationally and surely we want Scotland to be at the heart of that work.

We could fund meso nurses in Scotland through the NHS. Scotland currently has one dedicated meso nurse, Jan Devlin, who I am delighted to say is in the public gallery today; she is funded by Meso UK and Macmillan Cancer Support. From April next year, Meso UK will fund the post fully.

I have given just a few ideas, and we will hear more from those on the Labour benches during the debate. I am asking the Scottish Government to listen, to take those ideas and issues on board and to work with parties across the chamber and the campaigners in the gallery so that we can make a difference by using the powers of the Parliament to tackle this disease. We need to do that because, sadly, the disease will only become much more prevalent in the coming years.

Photo of Stuart McMillan Stuart McMillan Scottish National Party

I refer members to my entry in the register of interests.

I congratulate Kezia Dugdale on securing this members’ business debate. The Parliament has a strong history of dealing with asbestos conditions and has passed various pieces of legislation on it, the most recent of which was on pleural plaques in 2009. Scotland holds a significant place in the history of asbestos, having developed its industry early in the 1800s. By 1914, there were more than 60 asbestos manufacturers throughout Scotland. Scotland’s industrial heartland was Clydeside, where the famous shipyards saw significant growth as a result of the success of the shipbuilding and engineering industries and were responsible for 25 per cent of the world’s ships. There was huge demand for asbestos panels, which were soon to be in every ship that sailed from the Clydeside ports.

Building contractors and housing corporations were also major users of the product, which was famed for providing heat insulation at low cost, and it was quickly used to insulate boilers, pipes and storage heaters. The product was also rolled out as a cheap alternative in building homes and schools, with asbestos-insulated boards being used for walls and ceilings.

Recent mortality statistics show that, in the UK alone, around 100 people die per week from asbestos-related cancers and diseases. The mortality rate for asbestos-related diseases in the west of Scotland is one of the highest in the UK. However, we would be wrong to presume that the asbestos legacy is an historical issue. We know that there are a lot more asbestos issues to come. Exposure to the product continues across Scotland. Anyone working on a building that was constructed pre 2000 might be at risk of inhaling asbestos fibres. We are seeing a growing number of people who have suffered exposure to asbestos that they believe occurred in public buildings such as schools, universities and hospitals. As well as deaths among folk from the shipbuilding and construction industries, there are deaths of teachers, lecturers and care workers, as well as plumbers, electricians and others.

The charity Clydeside Action on Asbestos was formed in 1985 to provide advice and assistance to those suffering from an asbestos-related condition. It provides specialist advice on claiming industrial injuries benefits and state compensation and it has successfully campaigned to implement changes in Scottish law, some of which came through the Scottish Parliament. That has given victims of asbestos-related conditions and their families here more rights than those elsewhere in these islands have.

Because Clydeside Action on Asbestos has raised awareness of the issue, each year it receives approximately 800 new cases of people in Scotland who have been diagnosed with an asbestos-related condition. I meet Phyllis Craig MBE from Clydeside Action on Asbestos regularly. This September, we met the First Minister to discuss important developments in the diagnosis and treatment of asbestos-related diseases in Scotland. Kezia Dugdale raised a number of points in her motion and her speech. If, at any time, the Parliament decided not to view asbestos-related conditions and mesothelioma as serious, it would fail but, historically, it has not failed but led the way in the UK.

Earlier this year, Clydeside Action on Asbestos produced a document that went out to all general practitioners in Scotland. It has become a specialist learning resource and reference tool on how to deal with the scourge of asbestos. I held an event in the Parliament on the publication earlier this year. It is important for victims that family GPs are able to identify early symptoms of asbestos-related illness, including mesothelioma, so that a referral to a specialist can be made. The resource that Clydeside Action has produced has a section on early detection and allows doctors to develop a better understanding of the emotional, legal and financial strains that victims and their families encounter.

Debates such as this one can be helpful, but it is unfortunate that the motion does not highlight where Scotland has been successful and the fact that a lot of good work is being undertaken in Scotland, not only by Clydeside Action on Asbestos but by Asbestos Action Tayside and Clydebank Asbestos Group.

Photo of Donald Cameron Donald Cameron Conservative

I thank Kezia Dugdale for bringing the motion for debate and I commend her for being consistent and persistent in raising health conditions that are often overlooked. I use the term “overlooked” because, although mesothelioma affects only around 1 per cent of cancer sufferers in Scotland, it resulted from the poor working conditions of the heavy industrial period between the 1940s and the 1970s, as Stuart McMillan noted. It affects people from a range of sectors, is not a genetic cancer and did not develop as a result of radiation treatment or the effects of lifestyle choices. Mesothelioma is a needless cancer that resulted from asbestos and which affects hundreds of Scots today.

I first came across the condition during one of my first jobs as a lawyer in Edinburgh, when I did a temporary stint in a litigation department. In that firm, there was a dedicated team that dealt specifically with asbestosis claims and worked with sufferers of mesothelioma. It was a unique and desperately sad scenario that highlighted to me the significance of the condition and its acute prevalence in Scotland.

It is to be regretted that the Government’s “Beating Cancer: Ambition and Action” strategy does not mention mesothelioma.

Not long after I was elected and asked to take on the health portfolio for my party, several people got in touch with me about the condition. By and large, they were family members of someone who suffers from it or who has recently died as a result of it. There was a common theme in every email: that the condition receives little to no publicity and that there is no mention of it in the cancer strategy. That is why a debate such as this is important.

Photo of Stuart McMillan Stuart McMillan Scottish National Party

Historically, Conservative MSPs have voted against legislation that has been introduced to the Parliament to help people with asbestos-related conditions. Is Mr Cameron saying that that position has gone and that the Conservatives will look more favourably on proposed legislation on asbestos that comes to the chamber?

Photo of Donald Cameron Donald Cameron Conservative

I cannot speak for the party on what its position would be on legislation being introduced. As far as I am aware, there is no prospect of such legislation. My point is that when

I have lodged parliamentary questions on the issue, asking what action is being taken to raise awareness of and tackle mesothelioma specifically, the responses have concentrated on a general strategy to tackle cancer as a whole.

I welcome the fact that there is a strategy in place to deal with cancer; it is a destructive disease in all its varying forms and we must do everything possible to fight it from all angles. However, given the stark statistic that 1.2 per cent of cancer deaths result from mesothelioma, and in the light of the passion and vigour that mesothelioma campaigners—some of whom are in the public gallery—show for eradicating it, there must be greater focus on the condition in the cancer strategy.

I want the Scottish Government to realise that mesothelioma sufferers want specific guarantees about what it will do to tackle and prevent this condition. After all, Mesothelioma UK noted in its five-year strategy document that the UK as a whole has the highest incidence of mesothelioma in the world and that the numbers are growing. Although that is a UK-wide report, I encourage the minister and her team to read it and to take on board some of its ideas.

I hope that my comments and those of others around the chamber will impress on the Scottish Government the need for a real commitment to tackling mesothelioma specifically. That would not only act as a genuine comfort to the families of mesothelioma sufferers but would deliver some justice to those who continue to suffer the effects of it and who have lost their lives because of it.

Photo of Anas Sarwar Anas Sarwar Labour

I thank Kezia Dugdale for bringing forward this important debate and I pay particular tribute to the strength and courage of Julie Roberts and her family and other families who have lost loved ones to this terrible illness and who are campaigning so that other families can be spared pain.

Scotland has the highest global occurrence of mesothelioma, with a particularly high incidence in the west of Scotland—a terrible legacy of the previous use of asbestos in shipbuilding and similar industries. At present, there is no cure, but there are effective means of controlling symptoms and making early diagnosis. Although there are increasing numbers of clinical trials of new treatments, patients can access them only if they are promptly diagnosed and properly informed.

There are currently four key ways in which Scotland is not recognising the scale of the problem: NHS Scotland currently provides no mesothelioma-specific services; mesothelioma is excluded from cancer waiting-time standards; patient outcomes and the provision of services are not audited; and the Scottish Government commits no central funding to mesothelioma research.

I know that the Scottish Government is always keen to compare the NHS in England with the NHS in Scotland. In England, mesothelioma is subject to waiting-time targets, patient outcomes are audited, and the UK Government has identified mesothelioma as a priority area for the Department of Health and has contributed £5 million of central funding to mesothelioma research.

The situation in Scotland is unacceptable. That is why I believe that we have an opportunity to put in place a new model of mesothelioma care in Scotland. Because of glaring clinical need and despite receiving no formal funding, a model has grown organically in the west of Scotland, in the form of a team, established by leading expert Dr Kevin Blyth, which draws on expertise in oncology, pathology, radiography, cardiothoracic surgery and palliative care support. The multidisciplinary team convenes on a monthly basis at the Queen Elizabeth hospital. I stress the fact that it functions on the basis of good will and the team’s commitment rather than of formal job planning or funding from the NHS. We should pay tribute to all members of the team. Its funding comes from external sources, including Macmillan Cancer Support and Mesothelioma UK. Despite the clinical work that the team undertakes and the externally funded research, the model is fragile and unsustainable.

However, mesothelioma patients in the west of Scotland are fortunate to have the service. Significant service inequality exists elsewhere in Scotland, with no other dedicated mesothelioma services available. Outwith Glasgow, patients are looked after by committed and caring teams, whom we should thank, but the services are designed to look after lung cancer patients. As a result, mesothelioma patients often feel marginalised or report that their care needs are not properly addressed.

The exclusion of mesothelioma from the cancer waiting-time targets amplifies the problem, since health boards have no motivation to develop specific services for mesothelioma patients.

That specific point might well be covered in the wider review of patient standards, but I would welcome the minister’s comments on it.

Photo of Anas Sarwar Anas Sarwar Labour

I am in my last 40 seconds, so I will not take the intervention.

I believe that there is a need for a new model of mesothelioma care in Scotland. In addition to including such care in patient standards and central funding to support a world-leading service and research model, a hub-and-spoke model based in Glasgow is supported by many campaigners and clinicians. Such a model could provide high-quality and equitable care for patients, would work right across Scotland and could transform mesothelioma care in Scotland.

Scotland has world leaders in mesothelioma research and world-leading clinicians. I hope that the minister will listen to the people who are campaigning for a dedicated service and confirm this evening that the Scottish Government is willing not just to listen to those families but to act for them.

Photo of Ben Macpherson Ben Macpherson Scottish National Party

I thank Kezia Dugdale for bringing this important debate to the chamber. What inspired Kezia was the story of Julie Roberts, who is also my constituent. I welcome Julia, her mother Wilma and sister Lindsay to the gallery this evening. What is so inspiring about Julie Roberts’s story is that it is a real example of one voice helping to change a country. It is Julie’s story. Her courage in speaking out about her family circumstances and difficulties, and her inspirational determination to campaign on the issue have brought the debate to Parliament this evening. I will conclude by suggesting how we, collectively, can take that forward.

I pay tribute to Scottish Hazards and

Clydeside Action on Asbestos

, which Stuart McMillan mentioned. Scottish Hazards emailed many of us this afternoon before the debate and stated very clearly what I think is a mission statement:

“As a nation we must do all that we can to raise awareness of the causes of mesothelioma, ensure asbestos is properly managed and/or removed and prevent the exposures which cause mesothelioma—a fatal but entirely preventable disease.”

As I think about that mission statement, I think about the scale of the issue, which has already been mentioned. The UK has the highest mesothelioma mortality rate in the world, so action is most acutely needed in our country.

More than anything else this evening, I want my words to represent Julie Roberts. She asked me to raise some points around a central theme. She believes—as do I and many of us here—that we in Scotland can lead on the issue. We can give particular thought to investment in specialist knowledge and nursing. I ask the minister to comment on that in her remarks. We can also think about how we can invest more in research in order to tackle mesothelioma, how we can work harder to create more joined-up services and how we can increase access to palliative care to manage pain, which is the last line of defence when it comes to mesothelioma.

Lastly, Julie Roberts asked me to emphasise how we who are at the heart of public life in Scotland, can help to raise awareness of this terrible disease and, through that, inspire action on it. Given that one in five work-related deaths is a result of mesothelioma, it is particularly important in discussions or events that involve workers—especially in industries that are associated with mesothelioma—that we take the opportunity to raise awareness.

Perhaps Parliament could commit to raising awareness of mesothelioma on international workers day on 28 April 2017. Such a commitment might provide focus and inspire action against this terrible disease.

The Deputy Presiding Officer:

As a few more members wish to speak in the debate, I could accept from Kezia Dugdale a motion without notice to extend the debate.

Motion moved,

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

Kezia Dugdale.

]

Motion agreed to.

I am awfully pleased that members have agreed to extend the debate.

Photo of Jackie Baillie Jackie Baillie Labour

I congratulate Kezia Dugdale on securing the debate and commend Julie Roberts on campaigning to raise awareness.

Clydebank was, 20 years ago, confirmed as the asbestos capital of Europe. Figures that the Health and Safety Executive published in 1996 showed that West Dunbartonshire’s death rate from asbestos poisoning was 11 times the national average. Clydebank, not surprisingly, also has the highest death rate for mesothelioma in the whole UK.

West Dunbartonshire had a proud global reputation as the world’s leader in shipbuilding, but there was a huge human cost to our economic success. The area’s proud industrial heritage meant that thousands of workers over the years were exposed to the deadly dust in the shipyards and asbestos factories on the River Clyde. More than 3,000 workers were employed in the construction of the iconic Queen Elizabeth II at John Brown & Company in the 1960s, when use of asbestos in shipbuilding was at its peak. The biggest shipbuilders even had their own asbestos preparation sheds in their yards. Academics have demonstrated how those large companies such as Turner & Newall, which had an asbestos factory in Dalmuir, continued to put their workers at risk long after the dangers of asbestos were known.

Clydebank Asbestos Group was set up in 1992 as a voluntary organisation to provide support, advice and information for victims of asbestos and their families, and it is still going strong today. For almost a quarter of a century, the group has been consistent in warning people of the dangers of asbestos, campaigning for more stringent regulation and helping those who have been affected to seek justice through the courts, often coming up against the shocking tactics of insurance companies that use every trick in the book to avoid paying compensation to dying clients or their families.

Following a campaign that was led by Clydebank Asbestos Group in 1998, West Dunbartonshire Council became the first local authority in the UK to support the call for a ban on white asbestos. It took until August 1999 for the UK to ban white asbestos, five years ahead of the European Union deadline.

Kezia Dugdale touched on the fact that women have played a prominent role in the fight for justice in West Dunbartonshire, often continuing the struggle in the community and in the courts after their husbands’ premature deaths. Clydebank Asbestos Group’s current secretary, Hope Robertson, lost her husband to mesothelioma at the age of 59. On international workers memorial day in April, she said:

“We won’t be able to say ‘it’s over’ in my lifetime or my daughter’s lifetime but perhaps it might finally happen in my grandchildren’s lifetime. The frightening thing is that people are being diagnosed younger than before”—

I am sorry, this is quite emotional—

“and the idea that it is all gone and in the past is wrong.”

Although most asbestos victims are men, Kez Dugdale was right to remind us that women made up a sizeable portion of the workforce in the shipyards, the Singer sewing machine factory and the asbestos plants in Clydebank. The substance is so deadly that many women in West Dunbartonshire were also contaminated by washing their fathers’, brothers’ and husbands’ work clothes.

As well as thanking Clydebank Asbestos Group, I thank Clydeside Action on Asbestos and Asbestos Action (Tayside). They all make hugely important contributions to those who have been affected and their families. It is right for us also to thank the trade unions, the Scottish Trades Union Congress and Thompsons Solicitors, which has represented many of the families.

In the chamber tonight we are hearing that although much has been done in legislation, there is much more to do in practical terms. I echo the calls for specific NHS services for mesothelioma sufferers, whether that means specialist nurses or the best possible treatment pathways. I say to the minister that we could fund those things by recovering the funds that would be required to treat people from the companies that caused their disease in the first place. There is precedent for that, so I encourage the Government to do it. Maybe then we could give mesothelioma the prominence that it deserves in NHS treatment pathways. I encourage the minister to seize that opportunity.

Photo of Miles Briggs Miles Briggs Conservative

I congratulate Kezia Dugdale on securing tonight’s debate, which is an important one, not least for the people in our Lothian region who suffer from mesothelioma and for their families and friends. I also pay tribute to Kezia Dugdale for the campaigning that she has personally undertaken, and I join her in welcoming Mesothelioma UK’s new strategy and in paying tribute to the work of that charity and others that support people who have been affected.

As has been stated, Scotland and the UK have the highest rates of mesothelioma in the world, which is a tragic legacy of the extensive use of asbestos in many industries before its damaging health impacts became fully understood. The incidence of that cancer is rising in the UK, and about 200 people in Scotland are being diagnosed with it each year. Rates are expected to peak around 2020. Diagnosis and treatment can be difficult because symptoms are so similar to those of a number of other conditions and the cancer is, sadly, generally resistant to radiotherapy and chemotherapy. However, as with all cancers, early diagnosis is vital and treatment can control some of the early symptoms.

I believe that more needs to be done to raise awareness of mesothelioma, and I share the disappointment that it is currently not featured in the Scottish Government’s cancer strategy. I hope that that is something that the minister will speak about this evening. There is no reliable screening test for that type of cancer, so some constituents have suggested that the Scottish Government should undertake a direct marketing awareness-raising initiative that is aimed at people who have worked in the most high-risk trades and industries. I would be interested in the minister’s comments on that specific proposal, and on how we could take that forward.

There are a number of drugs trials on-going across the UK. I welcome them and wish them success. A new initiative from Cancer Research UK and drugs companies MSD Ltd and Verastem is being co-led by scientists here at the University of Edinburgh. The initiative will look at whether a combination of immunotherapy drugs will benefit patients, and it offers hope to early-stage patients and their families.

In advance of today’s debate, I received a useful briefing from Scottish Hazards, which points out that as well as those who suffer through use of asbestos in industry, a growing number of people are being diagnosed with mesothelioma who have been exposed to asbestos through working in public buildings, in addition to those who were—as has been mentioned—exposed to it when washing their family’s clothes. It is important that we support the work of organisations such as Scottish Hazards, which are doing good work to prevent future cases.

To conclude, I welcome today’s debate. With Scotland having the highest incidence of mesothelioma in the world, I believe that we should be leading internationally in research into that cancer and into how we can better support sufferers here in Scotland. I urge the Scottish Government to work with charities and other stakeholders to ensure that Scotland becomes a world leader, and that everything possible is done to improve awareness and detection and, above all, to deliver care for the families who need it.

Photo of Emma Harper Emma Harper Scottish National Party

I remind members that, as recorded in my entry in the register of members’ interests, I am a nurse.

I thank Kezia Dugdale for bringing the motion before the chamber today. As a newly elected member, I received an email message in my inbox from Julie Roberts—I thank her for being here—asking me, along with other MSPs, to take an interest in mesothelioma. She requested that I highlight the condition and support Kezia Dugdale’s motion, which asks

“That the Parliament recognises the need to tackle mesothelioma”.

Mesothelioma is a cancer that is caused by exposure to asbestos. The disease mainly affects the lungs, but any organ covered by mesothelial tissue, such as the abdominal peritoneum, can also be affected. Asbestos has been mined and used since prehistoric times as a fire-retardant, heat-resistant lagging material. As early as 1897, asbestos was attributed as the cause of pulmonary “troubles”. Over the decades since, it has been documented by many medics as having caused problems with the lungs.

My response to that email was, “Yes, I’m interested.” My best friend is Diane Cameron. Her dad, Jock, suffered from peritoneal mesothelioma. He was an engineer, and a pipe and boiler fitter. Jock used to describe how he worked with asbestos. He described how he took old pipe fittings out of schools, factories and even hospitals; he ripped out the asbestos with his bare hands. He said that he and the work boys used to scrunch the asbestos into snowballs and throw them at each other. Jock was a fit 70-year-old who took no medication, yet he died within a year of being diagnosed with mesothelioma.

I want to highlight the impact not only on the patients, but on the families who have lost parents and loved ones following exposure to asbestos.

I am aware of the Clydeside Asbestos Group and of Scottish Hazards, which also contacted my office. I was interested in speaking in the debate because, as a new MSP, I was asked to set up a cross-party group to address the issue of lung health in Scotland. “The Battle for Breath” report, which was produced by the British Lung Foundation, states that there are 15 main lung conditions that are major health concerns in the UK and Scotland—mesothelioma is one of them; it is mentioned 52 times in the report. Lung cancer is Scotland’s number 2 killer after heart disease; it is just ahead of stroke at number 3.

Rather than have separate groups for each lung disease, I appeared before the Standards, Procedures and Public Appointments Committee last week to affirm my case for establishing a new cross-party group on lung health, so that we can explore themes for improving lung health for people with many lung conditions, including mesothelioma. I heard that the CPG was approved last week.

We need to address the health of Scotland’s patients who have a diagnosis of mesothelioma, and we need to improve lung health for patients in Scotland whatever their condition. I asked my sister, Phyllis, who is a respiratory nurse consultant, for advice about mesothelioma. She said:

“Many patients diagnosed can achieve health benefits with appropriate treatment. Often, patients require medication and frequent visits to a specialist doctor. The treatments required can often be quite painful procedures, such as the drainage of pulmonary fluid from the lungs. It is required but, ultimately, it allows patients to breathe more easily. Right now, the prognosis is poor.”

I responded to the email from Julie Roberts in which she asked me whether I would be able to help highlight mesothelioma and people with a mesothelioma diagnosis. Even without a cross-party group, I would have agreed to support her. However, now that the lung health group has been approved, I can say, “Yes—and I am not only concerned, but willing to participate and to take action to address the lung health conditions, including mesothelioma, that affect Scots.”

Photo of Iain Gray Iain Gray Labour

I say “Well done” to Kezia Dugdale for securing the debate—and even more so to Julie Roberts, because if her campaigning had not inspired Kez, we would not be holding the debate this evening.

As Kezia Dugdale alluded to, Julie became a campaigner on mesothelioma through her engagement with the gamechanger public social partnership between the national health service, Hibernian Football Club and the Hibernian Community Foundation, which I happen to chair. That is one reason why I wanted to participate this evening, but I have another reason.

In the constituency that I represent are towns such as Prestonpans where I could take members down almost any street and find family after family that has been affected in one way by asbestos-related disease: they have lost fathers and grandfathers who worked down the pit or on the construction sites. They have all suffered from mesothelioma and know the toll that it takes.

A couple of those people are quite special to me and to my colleagues in the East Lothian Labour Party. One of them was a man called Gerald O’Brien. Many in the Labour Party will know that he was the agent for John P Mackintosh, the East Lothian MP. Gerald later became a national organiser for the Labour Party and was the party’s first women’s officer, back in the innocent days before it occurred to us that the women’s officer should perhaps be a woman. He was a hugely loved member of staff in the Labour Party. Before he did all that, Gerald was an electrician. We lost him to mesothelioma some years ago.

Someone does not have to have been 40 years on the tools to suffer from the disease. Another constituent whom I knew well for a short time was Jim Anderson, who was a teacher in my constituency for many years. As a student, he spent one summer labouring on the Cockenzie power station construction site; 45 years later, mesothelioma came and took him, too.

In a blog that Julie Roberts wrote in the past few days, she said something important about her dad and her uncle. She said that all they did was go to their work. They did not do anything wrong, they just went to their work: they did not inherit the disease from their parents or grandparents, they did not catch it from their neighbours, and they did not do it to themselves by drinking or smoking. Those who suffer from the disease simply went and built the power stations, the ships, the factories and the homes that we all wanted. They did that to provide for their families. They did the right thing and paid a terrible price.

This is probably nonsense, but it has always seemed to me that the disease takes the biggest men, although I know that it takes not only men. It seems to me that it picks out those men who have the most life about them. I did not know Julie’s dad but I have heard her speak about him in the film that she made, “My Life With Hibs”. He sounds like he was the kind of man who would fill the room with his strength, stature and love of life. Mesothelioma is a disease that takes that strength and stature away, then it takes your breath away, and then it takes your life away.

So what do we do? We have to respond in three ways, and they have all been mentioned this evening.

The first is to make those who are responsible take responsibility—the employers who carried on making their workforce work with asbestos when they knew fine what the consequences were, and their insurance companies, which have tried every trick in the book to avoid paying compensation to the families.

Secondly, we have to make sure that it does not happen now and fight tooth and nail to defend health and safety at work so that we do not see the disease come back again in another way.

Finally, of course, we have to ensure that mesothelioma is given the medical attention that it needs. We need to correct the shameful lack of specific services that were highlighted by Anas Sarwar and Kezia Dugdale. That is the question that we put to the minister tonight.

Photo of Aileen Campbell Aileen Campbell Scottish National Party

I am pleased to be able to close tonight’s debate and also, like all the other speakers, congratulate Kezia Dugdale on bringing it to the chamber.

I welcome Julie Roberts and her family to the Parliament and I pay tribute to the family for what they have done in honour of Gordon and Jim. The family has campaigned for improvements that they feel are necessary to ensure that Gordon’s life and Jim’s life were not in vain and that their untimely deaths can ensure improvements for others across our country.

Members have talked about the impact that this condition has had on their constituents. It is tragically cruel in so many ways and many have contracted the disease simply by going to work, or their partners have contracted secondary mesothelioma through washing overalls.

As stated in the motion, I pay tribute to the campaigners, trade unions and charities that have done so much to support those who have mesothelioma, brought about improvements and changes, and raised awareness of the condition. I also welcome the report by Mesothelioma UK and its strategy’s aim of seeking to make further improvements across the UK to the care and support of those who contract mesothelioma, including raising the profile of mesothelioma to prevent future cases of asbestos-related disease.

We recognise the work that is carried out by a host of organisations in addition to Mesothelioma UK, such as Clydeside Action on Asbestos, Asbestos Action Tayside and the Clydebank asbestos group, which, as Stuart McMillan said, provide advice and support to people with asbestos-related disease, and, in the case of Clydeside Action on Asbestos, provide resource to GPs and doctors on the wider implications of such cancers.

I want to talk about our wider approach to cancer. We all know and recognise that progress has been made on treating cancer and on survival rates, largely thanks to the hard work and endeavours of the people who work in the NHS to deliver our health and social care services. We also know that there is room to do far more, particularly in cancers that are linked to deprivation or industrial work, as is the case with mesothelioma.

In March this year, the Scottish Government unveiled its strategy, “Beating Cancer: Ambition and Action”, which serves as a blueprint for the future of cancer services in Scotland. Although the cancer strategy did not mention mesothelioma specifically, as many members said, that should not for a moment be taken as a sign that no consideration has been given to improving outcomes for people with the disease.

The Scottish Government is acutely aware that early detection of all cancers, including mesothelioma, is crucial. The earlier a cancer can be diagnosed, the better the chance of a more positive outcome. The cancer strategy will deliver investment of £100 million over five years, to improve prevention, detection, diagnosis, treatment and aftercare for all people who are affected by cancer. That will have a positive impact on everyone who is affected by cancer, including people who have a confirmed diagnosis of mesothelioma.

We will consider the implications of the Mesothelioma UK report in the context of the wider strategy and we will consider what lessons can be learned in the context of the current work on waiting times. Mesothelioma is under consideration for the extending tumour sites audit in relation to cancer waiting times, and I commit to updating members who have expressed an interest in the issue on the audit process.

Photo of Kezia Dugdale Kezia Dugdale Labour

I welcome the minister’s investment in the cancer strategy and her remarks about the importance of early detection. Will she tonight commit to a public marketing campaign that focuses on people who are exposed to asbestos, so that we can ensure that people in communities where there is exposure to asbestos get the early detection that could save their lives?

Photo of Aileen Campbell Aileen Campbell Scottish National Party

I committed to ensuring that the strategy takes on board the implications and recommendations of the Mesothelioma UK report. We will continue to engage with members who have expressed an interest in the matter, to ensure that we get our approach right for the people who have or potentially have mesothelioma or asbestos-related disease, in the wider context of our £100 million investment.

In addition to the work on the cancer strategy that I described, and to help GPs to promote the earlier referral and investigation of patients who are suspected of having cancer, we published, in 2014, revised Scottish referral guidelines for suspected cancer. The guidelines include a section on mesothelioma and should help GPs, the wider primary care team, other clinicians, patients and carers to identify the patients who are most likely to have cancer and therefore require urgent assessment by a specialist. In that context, there is perhaps scope to consider much more widely how we might more proactively advertise or target potential sufferers of asbestos-related disease.

Miles Briggs talked about the potential of new drugs for people who suffer from asbestos-related disease. We will ensure that that is part of the focus in our wider strategy on drugs and cancer. Emma Harper brought to the debate her experience as a nurse and talked about her friend’s experience. It was useful to hear about the cross-party group that she has set up to provide a longer-term parliamentary focus on health, which she confirmed will include mesothelioma in its consideration. I commit to working with her to identify areas of improvement and opportunities to do more on the issue.

Photo of Aileen Campbell Aileen Campbell Scottish National Party

Very briefly, if that is possible.

Photo of Anas Sarwar Anas Sarwar Labour

I apologise—it is getting very late. I thank the minister for her comments. Will she commit to including mesothelioma in the waiting time targets and to having a standard for mesothelioma treatment? Will she commit to extending the hub approach in the west of Scotland to the whole of Scotland, and will she commit to directly funding mesothelioma research in Scotland?

Photo of Aileen Campbell Aileen Campbell Scottish National Party

I have already made reference to the waiting times work and the wider consideration of waiting times that is going on. We can learn from the points that have been raised tonight, which link to the wider Mesothelioma UK report and what that will mean not only for the cancer strategy but the waiting times work and the current extending tumour sites audit in relation to cancer waiting times. That wider work will relate to the points that have been raised this evening and the comments that members have made.

In concluding, I will touch on—

Photo of Stuart McMillan Stuart McMillan Scottish National Party

I thank the minister for taking the intervention and I thank you, Presiding Officer, for allowing it.

The minister spoke earlier about nurses. Can she confirm that lung cancer specialist nurses adhere to the same care plan for people with mesothelioma as mesothelioma nurses do?

Photo of Aileen Campbell Aileen Campbell Scottish National Party

I pay tribute to Stuart McMillan for his knowledge and expertise and for the campaigning that he has done on the issue for the people that he has represented in his constituency and across the west of Scotland. I confirm that nurses adhere, where they can, to the same standards for lung health.

Jackie Baillie and Iain Gray raised the prospect of looking at recovering funds from those who have caused cancer. We will take their points on board and ensure that they are kept up to speed with any progress that can be made on that.

The Scottish Government and the Scottish Parliament have a strong record on supporting those who have been negligently exposed to asbestos, and significant provision regarding the law and damages for personal injuries has been made over the years, including through a number of bits of legislation—most recently, the Damages (Asbestos-related Conditions) Scotland Act 2009 and, supporting that, the Damages (Scotland) Act 2011.

I thank members for their speeches in the debate. We have seen significant progress in relation to cancer, but we know that we need to do more so that people like Hope Robertson can understand that their voices have made a difference in how we approach the condition, especially when it comes to the improvements that they seek. The cancer strategy will assist with that, but it will require us to work collaboratively with third sector organisations, charities, trade unions and other members who have expressed an interest in tackling mesothelioma and the other asbestos-related conditions that are, unfortunately, far too prevalent across our country.

Iain Gray reminded us of the importance of getting this right for people who are suffering from asbestos-related diseases. They got the disease only because they went to their work, and we owe it to them to do what we can to raise awareness and make the improvements that are needed to ensure that we have a better story to tell going forward. We have come a long way, but there is room for improvement.

Meeting closed at 17:58.