Mesothelioma Bill [HL]

Debate between Baroness Butler-Sloss and Lord Walton of Detchant

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.

Legal Aid, Sentencing and Punishment of Offenders Bill

Debate between Baroness Butler-Sloss and Lord Walton of Detchant

Wednesday 14th March 2012 Lords Chamber

[Lord Walton of Detchant]

My Lords, I support the amendments tabled by my noble friend Lord Alton. I do so as a doctor. I was brought up in a mining village in Durham County where as a youth I saw some of the ravages of industrial injury and the effects of pneumoconiosis on those who worked in the mines. Later, when I moved to industrial Tyneside, I had considerable acquaintance with industrial injuries of all kinds and industrial diseases caused by a variety of different agents. At an earlier stage of this Bill, I commented that I was asked not infrequently to make reports on people who had suffered neurological damage as a result of these agents. The noble Lord, Lord Beecham, responded by saying that when instructing me to give such reports he had been grateful for their nature and extent and also for the modest fees. Had I known that he took that view the fees might have not been quite so modest.

There is no doubt, as the noble Lord, Lord Thomas, has said, that industrial injuries of all kinds are prevalent in our society. Is there anything special about mesothelioma? There is indeed. It is a disease caused by exposure to asbestos. The cause is known. The clinical course is known. In this condition, the result of particles lodging in the lungs means that the pleura or membrane which covers the lungs becomes progressively thickened, causing compression of the lungs and respiratory failure. Unlike many other diseases, such as pneumoconiosis, this disease is inevitably fatal. It is a very special condition. It deserves special legal attention and for that reason I strongly support these amendments which I believe should be accepted by your Lordships’ House.

[Baroness Butler-Sloss]

My Lords, I apologise for not being present at the beginning of this debate. My name is on the letter and I want to underline my support for it. As a judge, I was involved with a number of these extremely sad cases, particularly at the Court of Appeal. The letter has been very helpful in setting out what is needed. I apologise to the noble Lords, Lord Alton and Lord Avebury, for not having heard most of what they said, but I have a shrewd idea that it was said extremely well.

Public Bodies Bill [HL]

Debate between Baroness Butler-Sloss and Lord Walton of Detchant

Wednesday 9th March 2011 Lords Chamber

[Baroness Butler-Sloss]

My Lords, I have been looking with interest at the very helpful parliamentary briefing, particularly on the HFEA and the statutory functions that fall into four main groups. I am very concerned about each area. If licensing is to go into the Care Quality Commission, as has already been mentioned, will that commission have the same level of expertise to deal with the really difficult cases that may come up? I speak as a former judge who had a case where semen was put into the wrong eggs. Two families found that the non-white semen had been put into white eggs, and the children born to the white family were not white. It was the most appalling story. It caused grief to two families and, of course, to the twin children. It became public knowledge. It was a case that I tried. What is needed is careful regulation of the clinics and expertise in what the clinics are doing.

Another matter I would like to raise in particular with the Minister, and one which has not yet been raised in this evening’s debate, is the collection of data, the division of information, and the maintenance of a register. What is happening, according to the Government, is that the licensing and regulating will go to the Care Quality Commission but the provision of the information, the data collection, will go somewhere else.

What rather shocked me was the last paragraph of the helpful briefing saying that the arrangements for the transfer of the information-related functions will be based on assessments, and functions will be integrated into the most appropriate body. We do not know where the data functions will be going, which I find extremely disturbing. It leads me to the view that this plan to abolish both the HFEA and the HTA, whose functions are going to be divided, has not been given the sufficient thought or impact assessment one would have hoped for. We have not yet been given good reasons why these two functioning bodies should be got rid of.

I entirely support the wise words of the noble Lord, Lord Warner. It may very well be that each of these bodies could be streamlined, pared to the bone, have less back-up staff and cost less money. However, having asked in another debate on this Public Bodies Bill, “If something works, why break it?”, I say that these two organisations appear to work and so it is premature, at least, to be abolishing them now.

[Lord Walton of Detchant]

My Lords, when I came into this House almost 22 years ago, my baptism of fire was the consideration of the Human Fertilisation and Embryology Bill. I spent a great deal of time considering its provisions, based upon that splendid report produced by the noble Baroness, Lady Warnock.

The purpose of the Act, as it became, was to license experiments on the human embryo up to 14 days after fertilisation, first, for improvement of the management of infertility and, secondly, to help in the prevention of the birth of children with fatal and seriously damaging disease.

Those objectives were, very largely, fulfilled. We got to a stage of being able, through licences from the HFEA, to embark upon a programme of pre-implantation diagnosis of some of the severest diseases like cystic fibrosis and muscular dystrophy. It did a wonderful job.

It became quite clear, however, that, because of the developments in human embryology and the enormous advances in research, it was necessary that the Act should be further amended, not only in order to prevent the birth of people with severe diseases but also to be able to use human embryo material and the stem cells derived from it for the treatment of human disease. That resulted in a number of other amendments and regulations being introduced.

We then went even further with additional developments. As many in this House will know, one of the great developments recently under a licence from the HFEA has been the ability to prevent the birth of children—not yet feasible but on the verge of becoming so—with a devastating form of mitochondrial disease. I will not go into the scientific detail because it is extremely complex.

I mention the word complexity because I cannot conceive that the role and responsibility of the HFEA—I entirely agree that it is not perfect; it may be slimmed down, streamlined or modified—could possibly be carried out by the Care Quality Commission, which is, under its major new responsibilities, required to inspect hospitals, care homes, general practices and all bodies concerned with the supervision of health work of all kinds. To try to carry out those responsibilities under the Care Quality Commission is simply not feasible.

Last week, as the noble Earl will remember, we debated a Question on the role of the Academy of Medical Science’s report on the governance of medical research. I agree entirely with what the noble Lord, Lord Warner, said: this is a very exciting and important development, particularly in the conduct of clinical trials and the supervision of research in general. It certainly does not cover the responsibility which the HFEA is carrying out, and I therefore cannot accept the Government's proposals to put that body within the Care Quality Commission.

I move on to the HTA for a moment. When I was a medical student in the early 1940s, on the top floor of my medical school there was a museum which was full of organs held in formalin in plastic bottles. They were a wonderful teaching resource, because they were organs showing the signs of disease and, for the teaching of medical students, they fulfilled a major responsibility. No one had asked the patients involved before those organs were retained for teaching purposes.

The problem of the Alder Hey so-called scandal was that the permission of the individuals from whom the organs were removed had not been taken. What nobody recognised at the time was that if you were to carry out a post-mortem examination to try to determine the nature and causation of the disease from which the individual had died, there was no way in which the simple carrying out of the post mortem and visual inspection of the organs could give you the answer. The organs had to be removed; they had to be pickled in formalin; they had to be studied under the microscope, to give the answers which everyone wanted to know as the outcome of that post-mortem examination.

Where members of my profession were mistaken was that it became almost accepted by doctors, pathologists and clinicians that once permission for a post mortem had been given they could assume that permission had been granted to retain the organs for such an examination. They were wrong. Hence, the Human Tissue Authority was created to control that process. It has been very successful not only in that regard but also in issues related to the retention of tissues obtained for diagnostic purposes by biopsy. It has also been extremely successful in controlling the use of anatomical material for teaching purposes. It has fulfilled a whole series of other functions. My view is that it is so necessary that that function should be continued that I do not believe, for the same reasons, that the Care Quality Commission could feasibly absorb that task. It could do so only if it took on board the scientific experts on human fertilisation and embryology on the one hand, to deal with the responsibilities of the HFEA, and the scientific experts in pathology, anatomy, molecular biology and other branches of medicine, to look at the human tissue issues and also to be able to deal with issues relating to the donation of organs for transplantation. Those complex issues are so broad in their responsibility that I do not believe that the Care Quality Commission could conceivably handle them all. That is why I give warm support to the amendments.