Mesothelioma raised In Parliament: 60,000 British People Will Lose their Lives To This Killer Disease Over The Next 30 Years. Read the case for resources and research.

Mar 4, 2020 | Uncategorized



Mesothelioma Lump Sum Payments (Conditions and Amounts) (Amendment) Regulations 2020



03 March 2020 Volume 802


15 pm


Lord Alton of Liverpool (CB)



My Lords, it is a great pleasure to follow the noble Baroness, Lady Thomas of Winchester, and I will echo some of her remarks about resources, research and automatic uprating. 


Along with many other noble Lords in Grand Committee today, I have been involved in the fight against mesothelioma for many years.


 I am pleased to see this important issue before us again because it is important that we keep it in the public eye and keep talking about the questions that the noble Baroness has just raised.


This is not an abstract, theoretical issue for many Members of your Lordships’ House.


 I have been surprised over the years by the numbers of colleagues from both Houses of Parliament who have told me about the loss of loved ones—people within their own families—who were affected by this killer disease.


 I fully support the uprating of the lump sum payments in line with inflation. We must do everything possible to support people who have been exposed to asbestos and other hazardous substances at work and who now face these terrible consequences.


In previous years, when these regulations have been discussed, as they have been annually since the introduction of the compensation scheme, noble Lords have asked whether future increases could be made automatically rather than being at the discretion of Parliament—a point that the noble Baroness touched on a few moments ago. It is important that the Government give careful consideration to this argument, and I look forward to hearing from the noble Baroness, Lady Stedman-Scott, when she comes to reply, about how the Government intend to take forward the question of automaticity. 


Doing so would send a powerful message that we are committed to supporting people and their families affected by these awful diseases.


Why do we need to keep raising our voices about mesothelioma and pneumoconiosis? 


There is a misconception that occupational lung disease is a historical problem that has been solved. However, there are still many occupations and high-risk work activities that present risks to lung health, from construction and cleaning to artisan baking and much more. The Health and Safety Executive estimates that occupational lung disease results in around 12,000 deaths a year.


Mesothelioma is an invasive type of cancer caused by prior exposure to asbestos. It grows in the pleural membrane that lines the outside of the lung and the inside of the chest. Less commonly, it can also affect a similar lining around the abdomen or the heart. 


There is currently no cure. 


Mesothelioma patients often have a short life expectancy and experience complex, debilitating symptoms. Around only 5% to 10% of people diagnosed with mesothelioma survive for five years or more.​


As the noble Baroness reminded us, I made the point last year that, tragically, we have the highest rate of the disease anywhere in the world. 


Mortality rates have more than quadrupled over the past 30 years.


 It is estimated that around 2,500 people die of the disease every year, and that over the next 30 years around 60,000 people will die of mesothelioma in this country unless new treatments are found.


Mesothelioma is more common in certain parts of the country, such as Liverpool, where people are 18% more likely to die of this disease. Indeed, it was as a Liverpool Member of Parliament in another place that I first encountered the tragic and always fatal consequences of this disease. 


In Liverpool, mesothelioma has its roots in the historic industrial shipbuilding legacy, as asbestos was used extensively in shipbuilding. 


Later we will hear more about pneumoconiosis from my noble friend—and friend in every respect—Lord Wigley, but I can see that the noble Lord, Lord Jones, wants to intervene. I would not dream of holding back from allowing an intervention from him.



Lord Jones (Lab)


I am grateful to the noble Lord. I rise simply to say that I recollect the strong campaigns in another place made over the years by the noble Lord, Lord Alton, with sincerity and indeed to some effect.



Lord Alton of Liverpool


I am grateful to the noble Lord. For me, it has been a great pleasure to co-operate with him in both Houses of Parliament on issues of this kind. 


As he knows from his experiences in north Wales, many lung diseases are caused by inhaling dust. The common types include coal workers’ pneumoconiosis, which is caused by breathing in coal mine dust, and silicosis, which is caused by breathing in crystalline silica dust and typically affects workers in industries such as quarrying, foundries and potteries. Like mesothelioma, there is a long delay between exposure and onset of the disease. In 2012, 374 people in the UK died because of pneumoconiosis.


What about diagnosis, prevention and support for people with mesothelioma or pneumoconiosis?


 Here I pay tribute to the British Lung Foundation. 


This wonderful charity raises awareness of occupational lung disease and funds research into treatments and cures. It also provides the secretariat to the Taskforce for Lung Health. The task force is a coalition of more than 30 organisations from across the lung health sector, including royal colleges, patients, and the Health and Safety Executive, who came together to publish a five-year national plan to improve lung health in England. Included in the plan are recommendations to improve prevention and awareness of occupational lung diseases such as mesothelioma and pneumoconiosis. 


I should like the Minister to listen to two of the recommendations, which I will highlight, in order to ask her what more the Government could do to support their elevation in order to make sure that they are given real substance.


Under these recommendations, employers are responsible for ensuring that effective measures are in place to control exposure to hazardous substances in compliance with the Control of Substances Hazardous to Health Regulations 2002. 


They should also highlight risks at work to employees and encourage people to ​think about their own and others’ safety, including wearing the right protective clothing and masks. 


What are we doing to make sure that employers are honouring those recommendations?


Secondly, healthcare professionals should be trained to recognise and understand lung diseases which are caused at work. 


Asking questions about occupation when a patient presents with respiratory symptoms could improve early detection, allowing people to start treatment as soon as possible, as well as to access any compensation that they are owed. 


The number of occupations that present risks to lung health is surprisingly broad. Staff training should be included in undergraduate and postgraduate curricula and continuing professional development. 


Is that something that the noble Baroness would be prepared to take up with the relevant Ministers in other departments to ensure that it is acted upon? What will the Government do to take forward these recommendations?


What are the Government doing to increase funding for mesothelioma research? 


Research into lung disease is underfunded in comparison with the disease burden. Only 1.8% of the total UK health research spend went towards respiratory disease in 2018, despite it being one of the top three killers in the United Kingdom. 


As I have said, there is no cure for mesothelioma and it is poorly understood as a disease. 


That point was made earlier by the noble Baroness: the reasons people contract the disease are not sufficiently well understood.


In 2014, I tabled an amendment to the Mesothelioma Bill, and in 2015, I introduced a Private Member’s Bill in your Lordships’ House which would have put a small levy on participating insurance firms to help secure long-term research funding into mesothelioma. 


Unfortunately, the amendment and the Bill were defeated. 


At the time, it had the potential to raise about £1.5 million a year for research. That represents a small amount of money to each of the insurance companies but would have created a great number of research opportunities and given hope to people living with mesothelioma and, indeed, their families.


Since then, the Government have allocated £5 million for a national mesothelioma centre at Imperial College. I thank those Ministers who put in considerable effort to secure that and to look at voluntary funding from the insurance industry—I am thinking in particular of the noble Lord, Lord Freud, and the work that he did on that.


 I am pleased that the British Lung Foundation was also able to secure match funding for this £5 million and that two insurance companies, Aviva and Zurich, donated a combined £1 million to the British Lung Foundation’s mesothelioma research programme. 


Unfortunately, negotiations for a broader long-term funding commitment from the insurance industry came to a standstill. What are Ministers now doing to take that forward, building on the excellent work of the noble Lord, Lord Freud?


Overall, the British Lung Foundation has spent over £8.7 million on research into the disease. With this money, the BLF has been able to support further research and clinical trials, and has set up a mesothelioma research network. 


The network brings together researchers to share ideas and collaborate to help translate research more quickly into new diagnostics and treatments for ​people with mesothelioma. It now has 180 members worldwide and has led to 12 new or potential research collaborations. 


I pay special tribute to the efforts of the noble Lords, Lord Giddens and Lord Willis, and the noble Baroness, Lady Blackstone, who have worked, with me and others, to bring some of that about. 


Some of the research projects funded or co-funded by the British Lung Foundation have included exploring using the immune system to fight the disease and the development of a tissue and blood sample bank, MesobanK, which gives researchers quick access to samples and data to help accelerate research.


I would like to see more research into how we deal with asbestos in schools. This is a very real issue, about which far too little has been done. Again, I pay tribute to my noble friend Lady Finlay of Llandaff, who has taken a lead on this. 


It is also important to look at the effect of mesothelioma in the Armed Forces. We should recall the noble Lord, Lord West of Spithead, describing to us how young men played snowballs with asbestos at Dartmouth. The consequences of our past ignorance are still being lived out today.


While I fully support compensation for the victims of these diseases, it is surely in everyone’s interest—the victims, the Government and the insurers—to put investment into finding a cure. That would, long term, remove the need for lump sum payments or any insurance industry levies. Because this field is so underfunded, every pound of investment is likely to be worth while and to attract further funding. I am pleased that the British Lung Foundation continues its work to secure funding for vital mesothelioma research. It has recently secured £5 million over five years from Catalina Holdings, aimed at achieving early diagnosis and trials of high-potential drugs. But the Government must do more as well.


I come to my last point. 


The Merseyside Asbestos Victims Support Group—I pay tribute to John Flanagan and to Joanne Gordon, who chairs the Asbestos Victims Support Forum—has raised with me the particular case of equalising and upgrading posthumous payments. I hope that the Minister will reply to this point tonight—I know that it has been raised with the Government by the metro mayor of Merseyside and others. 


The payments are meant to provide some compensation for asbestos victims who cannot take legal cases. That is surely right. However, there is an inconsistency in the schemes. If applications are made after the patient has died, the payments, which can be claimed only by surviving partners or dependent children, are substantially lower. That cannot be right.


A victim aged 77 making a claim based on a 100% IIDB award will receive £14,334. The surviving partner of someone who passed away at the age of 77 will receive £7,949. In such a situation, many family members feel that the life of their loved one lost to this devastating disease is regarded as being of less value. 


This is surely morally wrong, especially as in a legal claim a surviving partner will suffer no such disadvantage. Furthermore, victims’ families could suffer a financial hardship, as people budget on the basis of two incomes and, through no fault of their own, are reduced to one income and are further disadvantaged by receiving a lower government compensation payment.​


The victims who receive payments are not interested in the money for themselves. However, they are concerned about the financial security of their families. In this situation there is clearly a moral and financial case for raising the level of posthumous payments. I know that the noble Baroness will have been listening with care, and I hope she will be able to respond in a positive way.


There are also practical considerations. 


Of the 3,830 payments made in 2018, only 260 were posthumous claims. In 2010, the Government acknowledged that there was no justification for differential payments, further adding that such inequality in payments could put pressure on victims at a time when they are most vulnerable. 


The Government made a firm commitment to bridge the gap between in-life payments and posthumous payments. I hope the noble Baroness is able to say today that that commitment will be honoured.


Some 60,000 people will die over the next 30 years. We owe it to them not to merely go through an uprating ritual every year but to provide tangible support and world-class leadership in research.



 5.30 pm


Lord Wigley (PC)

My Lords, I am delighted to follow the noble Lord, Lord Alton, in this debate. We have campaigned together on many occasions, and I was glad to support his Bill in the past.


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