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Scottish Parliament debates mesothelioma in Scotland

Scottish Labour Party leader, Kezia Dugdale introduced a lively cross-party debate about mesothelioma in the Scottish Parliament on 20 December 2016. You can read a transcript of Kezia’s introductory speech below.

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.