Mesothelioma Bill [HL]

Baroness Butler-Sloss Excerpts

Wednesday 5th June 2013 Grand Committee

[Lord Walton of Detchant]

My Lords, it is a pleasure to follow the noble Lord, Lord Alton, particularly in the light of the lucid and forceful way in which he has proposed this amendment. I have added my name to the amendment because I believe very strongly that, as he has pointed out, the amount of funding in this country that has been devoted to research into mesothelioma, its causation, its development and its treatment has been miniscule. I join him in paying tribute to the contribution over the years made by the voluntary organisation, the British Lung Foundation, in examining ways in which research into this wretched disease can be conducted. However, the Government’s contribution to this research—for instance, through the Medical Research Council, of which I was once a member—has been minimal. Therefore, I am very much in favour of the principle underlying this amendment.

I used to teach my medical students that while there are plenty of incurable diseases in medicine, there are none that may not have their effects modified by pharmacological, physical or psychological means. Mesothelioma is almost an exception to that rule, although it is clear that in the early stages of the disease certain physical mechanisms can alleviate some of its worst effects. The tragedy of mesothelioma is that the deposits of this cancerous process are laid down in the pleural cavity, between the surface of the lung and the internal surface of the chest wall. Gradually, as those deposits increase, the actual flexibility of the movement of the chest wall—in the muscular contractions which are responsible for our involuntary taking in and expiring of air—is slowly but progressively lessened, so that in the end the patient is almost subject to the feeling of having a straitjacket around their chest that prevents them from respiring. Eventually, it is fatal. Happily, there are mechanisms with drugs, sedatives and many other things that can help to ease the terminal phases. Nevertheless, the end result is tragic and appalling for anyone who has witnessed it.

A colleague of mine who was a consultant neurologist developed mesothelioma—the result, it appears, of being as a youth a keen club cricketer in villages in County Durham. It turned out that the changing room in which he regularly changed before appearing on the cricket field was lined with asbestos. That was eventually thought to have been the source from which he acquired this disease. It is a tragic condition and it deserves close and careful attention.

I also used to teach my medical students that today’s discovery in basic medical science brings tomorrow’s practical development in patient care. As yet, there has been no such basic discovery in the science underlying the causation and development of mesothelioma and, as yet, no drug has been discovered that is capable of reducing that progressive, cancerous deposit and the progressive process of strangulation. That is not to say that there have not been some limited discoveries that have benefited individual patients, but much more is needed.

I know what the Minister will say: that an amendment such as this has no place in a Bill or a statutory instrument because it is, in a sense, permissive. I can understand fully the view that he is going to take in that regard. However, I do not believe that it is beyond the wit of man, and certainly not beyond the wit of the Minister, to achieve some kind of Machiavellian political intervention or manipulation enabling the principles underlying this amendment to be fulfilled in law.

Although I have given my name to Amendment 31, I must say that I disagree with its last phrase. It says that,

“the funds raised through this charge shall be remitted to a competent research institution to fund research to find new treatments for mesothelioma”.

It should say “a competent research-granting organisation”. What could be better than the Government’s own research arm, the National Institute for Health Research, which is chaired by the Government’s Chief Medical Officer, Sally Davies? It could be the perfect example. I hope very much that the Government will find the means to fulfil the principle underlying this crucial amendment in managing to persuade these insurance companies— perhaps “persuasion” is not exactly the right word; it might need something a bit firmer to get the money out of those bodies—to enable the National Institute for Health Research to fund crucial research on this devastating disease. It deserves everything that we can put into it and a great more than we are already doing.

[Baroness Butler-Sloss]

My Lords, I, too, have put my name to Amendment 31. It is with some hesitation that I rise to speak after the two formidable speeches that we have just heard. Having put my name to the amendment, though, I want to say something to support it. It is indeed a modest amendment but it has enormous potential advantages for important research seeking new treatment and a possible cure. We have already heard from the noble Lord, Lord Walton of Detchant, what he thinks could be done and why it needs to be done. Of course, I defer to him.

As one of three judges in the Court of Appeal, I heard a number of these cases, and each story was tragic. Although I was a judge for 35 years, these stories have remained with me. We know that currently there is no cure. We know that currently the treatment is poor compared with that for other forms of cancer. It is crucial and urgent that we have proper research. As the noble Lord, Lord Alton of Liverpool, has said, it is a scandal that this is so poorly supported, when it is a killer but other forms of cancer can be treated and people can live for a long time. Sufferers die two years after the diagnosis—it is like motor neurone disease, and even that, as I understand it, gets more research funding than this does. It is extraordinary that the people who suffer from it are not properly regarded by the state or indeed by insurers. It is high time that the lack of financial support should be remedied with this Bill, at least to some extent.

I very much support the principle of the amendment. Like the noble Lord, Lord Walton of Detchant, I do not entirely support the wording. I do not think that matters because we are not going to vote on it today, and if the Government can come up with better wording and be supportive, that is exactly as it should be. The amount of money that would be raised under the present scheme is a modest £1.5 million. It would be much better if the Government felt able to match it; that would be valuable.

I was entertained by the reference by the noble Lord, Lord Alton of Liverpool, to the Gambling Act, which shows a very useful precedent. It is just possible that if some law were passed in this Bill, we could then to go the insurers on a voluntary basis and say, “If you don’t, it will be backed up by primary legislation”. So we want it there as a spur. If that can be done in gambling, I really do not see why it cannot be done in mesothelioma.

[Lord Wigley]

My Lords, I, too, have added my name to Amendment 31. I thank the noble Lord, Lord Alton, for the diligent commitment that he has shown to these issues, which I know is appreciated by all concerned. He deserves to succeed with this amendment. Following on from what the noble and learned Baroness said a moment ago with regard to the potential leverage that an amendment such as this could carry, it reminded me of the term used in chess that the threat is always more dangerous than the execution. Having this in the armoury, I suspect, would be very useful indeed.

Under the proposed new clause, the scheme administrators would be permitted to charge an additional annual administration fee of some £10,000 from each insurer. One can argue, certainly, that there could be a sliding scale there. That is detail; it is the principle that we are after here. The clause sets out that all funds raised from this fee would be invested into research for treatments for this awful disease. Listening to the noble Lord, Lord Walton, speak from his own experience of the medical world, we see the pressing need for these funds to be made available. They should be available already. They should be coming from the normal course of research funding. But as they are not, we need to do something and there is an opportunity to do so here.

--- Later in debate ---

[Baroness Butler-Sloss]

I hope that the Minister will forgive me for interrupting him again but is he saying that the department cannot raise money for itself, or that the department cannot approve of a levy that is being taken from the insurers? Is the Bill not broader than the department? Can Parliament not put it into the Bill even if the DWP says that it is not part of its remit? The two points are, first, whether you can support a levy even if you cannot raise the money yourselves, and, secondly, why can the Bill not go forward with it while we discuss whether another government department will be helpful? At the end of the day, if a government department is going to say that it will not help to raise money for mesothelioma, what on earth is the public going to think about the coalition?

[Baroness Masham of Ilton]

Is it not about time that we changed the policy, if it is policy, because surely now one wants to work together? Health and social care are trying to work together, so why not work together with pensions and health?