Mesothelioma

Baroness Finlay of Llandaff Excerpts

Thursday 27th October 2016 Grand Committee

[Baroness Finlay of Llandaff (CB)]

My Lords, I am most grateful to the noble Lord, Lord Wills, for securing this important debate, and the noble Baroness, Lady Couttie, for outlining the clinical scenarios that people face, often when they are young, as they suddenly realise that they have this devastating disease. More than 2,500 cases are diagnosed each year.

I will focus initially on the iceberg effect; we are seeing just the tip because of asbestos in schools and the worry about that. Some 94% of cases of mesothelioma are effectively preventable because they are associated with chronic exposure to asbestos in one way or another, and we know that three-quarters of our schools have asbestos in place. The number of teachers dying of mesothelioma has been going up from around three a year in the early 1980s to 22 in 2012 alone. That is a marker of developing mesothelioma following chronic exposure.

The Committee on Carcinogenicity of Chemicals in Food, Consumer Products and the Environment has pointed out that we do not know whether children are intrinsically more susceptible to developing mesothelioma following asbestos exposure. However, it seems that the lifetime risk if they are exposed at the age of five is about five times that of someone aged 30 who is exposed to the same amount of asbestos. Therefore it seems that exposing children is storing up problems for the future.

I would like to coin the term “pre-mesothelioma” for the number of people in the population who will probably go on to develop mesothelioma but have no idea about it at all. If we are undertaking research, we have to get to earlier diagnosis, so we have to find ways much earlier on of picking up the markers of transformation to malignancy in the areas where asbestos fibres are stored. At the moment we do not know of any actionable drivers of the disease in order to pick up and identify early markers. There are multicentre trials, as the noble Baroness has just outlined, but the problem is that they are very disparate. That is why there is a desperate need for a single centre in the UK to co-ordinate them. That reminds me of when I was a very junior doctor and the MRC co-ordinated trials into the leukaemias, and it was from those that some advances were made. There needs to be a driver with just about everybody being recruited into a trial if that is at all possible. Currently, patients have to find out about trials and they do not really know where to go. They want to contribute because they do not want the same thing to happen to other people. The other problem is that of course while the MesobanK is in place and the cell lines are coming along, they are not there yet. We need to identify how tumour surface antigens are expressed and detect better markers of early disease.

I remind noble Lords that 60% of patients diagnosed with mesothelioma are dead within a year; in other words, they are palliative care patients. I am afraid that some clinical commissioning groups are not commissioning specialist palliative care services adequately, not at a level that allows them to be integrated with cancer and chest disease services. That is essential to provide psychosocial support as well as support for the rest of the family, and to deal with the devastating symptoms of the disease. Those groups of specialists also want to research some of the effects of the disease when it is not curable.

Lastly, we need data. I declare an interest as chairman of the National Council for Palliative Care. I was very concerned to discover that Public Health England does not plan to carry on collecting a minimum dataset from specialist palliative care services. Without that data we will not know whether what we are doing is improving services for patients. It would cost only £200,000 to refresh the collection and data management process, which in the greater order of things is nothing. Without good data on the number of patients, the people who transform from what I would call pre-mesothelioma into mesothelioma, and the numbers that need palliative care services, we will have no idea whether we are improving.