Medical Innovation Bill [HL]

Baroness Gardner of Parkes Excerpts

Friday 27th June 2014 Lords Chamber

[Baroness Gardner of Parkes (Con)]

My Lords, I rise to support the Bill because I am convinced that it offers hope, and I think that that is one of the most important things in life. Many years ago, when I was on the Greater London Council, our Chief Whip, a very nice woman, was in the Royal Marsden and in a terminal condition. She said to me, “It has been marvellous to have my colleagues come in, except for that one”—he happened to be a doctor—“who came in and said, ‘Oh well, that’s it, Billie, you’re finished and on your way’”. She said, “That was the one thing I did not want to hear. I wanted hope and the feeling that there was some hope”.

I had not remembered that until I met Les Halpin, of whom I am sure many noble Lords have heard. In 2011 he was diagnosed with motor neurone disease. The Daily Mail, which I do not often quote, described him as a maths genius confined to bed—this was towards the end—with a new aim: becoming a guinea pig for the experimental drugs which could save his life. That is the very important thing. My godson in Australia died not long ago from motor neurone disease, and it is a horrible condition. Les would certainly have been in a position to give informed consent. Various letters of opposition that we have received say that informed consent will be impossible to get. He was quite clear. When I first met him, he was quite fit, and he explained in great detail that he wanted to have these new drugs tried and was prepared to be self-funding at that stage because he thought it might benefit others.

It is quite by coincidence that I have held this view for some time; it is not just because I happened to be sitting next to my noble friend Lord Saatchi on the day that we had the First Reading of the Bill. At the time, I had a Question along the same lines. I met Les when he was quite fit, and then just a year, or a little more, later he was totally tied to bed and unable to do anything. The one thing that he had been deprived of was the hope that something might have helped him. It is more important than that; it is both hope and research, a double value. If it helps the person who has the innovative treatment, that is good in itself—but if, on the other hand, it helps people who follow and is just one element in a chain of tests for something, that will be hugely valuable to others. It is surprising how many people who are very ill would like to be able to help those who follow.

Les set up a charity called Empower: Access to Medicine. I understand that an application has been made to the Charities Commission for registration, but that process takes a fair time. So although he did not get acceptance for the type of treatment he wanted during his lifetime, his work is continuing, and today’s Bill is important and, I believe, very much in the interests of patients. I have received many briefing papers from many groups, most of which seemed pretty self-interested or self-protective. The point has been made how valuable it is for practitioners to have a means of protection, but I was reassured completely by listening to my noble and learned friend Lord Mackay of Clashfern that the protections are there in the Bill and that reasonable treatment is what we are talking about. The noble Baroness, Lady Bakewell, made other points. I rarely disagree with my noble friend Lady Masham, but on this occasion I do disagree with her. I understand her views, but I think that the Bill is more important and I do not think that she will find that there is a lack of the necessary protection there. I strongly support the Bill.