Provision of Epilepsy Services

Lord Stevenson of Coddenham Excerpts

Tuesday 30th November 2010 Lords Chamber

[Lord Stevenson of Coddenham]

My Lords, I, too, congratulate the noble Baroness on introducing the debate and on the comprehensive but succinct words she used. They have saved me a problem and I have absolutely no intention of using either the time I was allowed or the longer time. I think we must have had the same briefing notes and, if I ally them to a number of things that other speakers have said, most notably the noble Lord, Lord Patel, I have virtually nothing to say.

However, I would like to put a thought in the Minister’s mind for when she goes back to the department. I believe that this is an area of medicine where there have been dramatic improvements over the past five to 10 years and where the infrastructure and the system have failed to catch up with the improvements and their potential effects. To put it at its crudest, in street language, the system—the NHS—and people who want to take credit for it are missing some very easy wins and low-hanging fruit.

I declare two interests: first, I am a vice-president of the National Society for Epilepsy. The noble Earl, Lord Howe, is our patron, whom we honoured recently by creating a lecture in his name—that is almost unheard of. I would like to send back the message that he has been a fantastic patron. Secondly, one of my four children has epilepsy.

I have been brought up to speed on this subject and there is very good news. If I may bore your Lordships by talking about my child—I hope that my epileptic son does not read Hansard—yes, he has a cocktail of drugs every day; yes, he cannot drive and there are various other things he cannot do; and yes, he lives with a certain insecurity, as do we all. However, he leads a very normal life. He has just finished an MBA INSEAD; he is starting his own business; he has a very good social life; and he neither sees nor hears any stigma. He is basically normal. This would not have been possible 20, probably 10, years ago; there have been dramatic changes.

The only thing I will say that has not been mentioned by others, probably because they would take it for granted, is that there have been dramatic changes in genetics and brain screening. The people at Queen Square, Professor John Duncan, Professor Sanjay and various people working in the area who are world leaders in the field—I imagine most people read the article in the Guardian today on the same subject—have a fantastic job because they are improving people’s lives almost every week of the year.

So that is all good news. The problem is—which is why I mentioned him—my child is one of the lucky minority and there are, of course, people with epilepsy with intransigent problems. However—horrible as it is—modern techniques of surgery are improving so dramatically as a result of MRI scanning that even they are getting help. The point I wish to make is that this illness is much more widespread than was thought in the stigmatised age. The figures show that it is ridiculous how many misdiagnoses are made; that it is ridiculous how much money is being spent because epileptics are classified as disabled when they are not and need not be; and it is ridiculous how many people who have got what my son has got—reasonably bad but not terrible epilepsy—are not being given the cocktail of drugs that he is given.

I am quite pleased that I am well under the first time limit. I am not a scientist; I have lived with this issue for 15 years and I have got heavily involved with it. I believe that decent, highly motivated people in the Minister’s department and other places have failed to grasp the factual implications of the changes in science. I come from business and I believe that for relatively little money a self-financing programme over 18 months could be established. I shall not give all the figures but with the between £20 million and £30 million lost in misdiagnosis and £240 million lost on people classified as disabled, a large number of whom do not need to be, you could train many epilepsy nurses and bring in and finance more specialists. I would love the Minister to go back and ask the department whether this is an area where people have not caught up with some easy wins for our collective health.