Medical Innovation Bill [HL]

Lord Blencathra Excerpts

Friday 27th June 2014 Lords Chamber

[Lord Blencathra (Con)]

My Lords, I declare a deep and personal interest which I have had for the past 16 years since I was first diagnosed with MS. I congratulate my noble friend Lord Saatchi on the way he has introduced his Bill, on the content of the Bill and on the way he has conducted himself over the past three years. It is a lesson to us all. I thank my noble and learned friend Lord Mackay of Clashfern, who has reassured us that there are adequate safeguards in the Bill and that we should not have concerns about any additional risk of doctors being sued for inappropriate or overinnovative behaviour.

The objection to the Bill from the medical profession is, in the main, that innovation happens already and the Bill is not necessary. I do not see that as in any way taking away the need for the Bill. If the Bill is not causing any slowdown in innovation, it is reasonably safe to let it through.

The objection from many in the legal profession seems to be that it will limit the chances of people being able to sue their doctors for negligence. If that is the case, that is a jolly good thing because I worry that in this country we are heading towards the American model where doctors seem to be afraid to prescribe an aspirin in case they get sued.

With all due respect to noble—and noble and learned—Lords on either side and to the medical profession, we have not heard much from the patient’s perspective this morning, and if your Lordships will forgive me, I will selfishly and arrogantly speak from the patient’s perspective.

I am lucky. I have slow-progressive MS. Those who get motor neurone disease or Parkinson’s disease are in a much worse position. Every time I see my consultant, I do not take my lawyer in tow behind me, waiting to sue him if he has given me wrong advice. Our discussion is always: what are the Americans up to? What is the breakthrough? Is it time for beta interferon? Should I change from injections of copaxone to something else? It is always about searching for that hope that there is something that will fix it one day.

I believe that we are getting close to a fix on multiple sclerosis. Certainly for relapsing and remitting, we are getting close. I think that if you were to do a study, if hypothetically the Department of Health were to say, “We have got a new drug. Could we have volunteers to try it?”, overnight you would find 10,000 people with multiple sclerosis saying, “Yes, we’ll give it a go in proper trials”. Worldwide, you might find 1 million willing to give it a go.

A breakthrough was announced in the United States in October last year by the Scripps Research Institute. It discovered that a drug called benztropine, which is currently on the market, has been on the market for many years and has been approved to deal with the side-effects of Parkinson’s, completely restored the myelin sheath in mice and rats. The institute is going on eventually to conduct some clinical trials. This drug is approved for use in this country, again for Parkinson’s patients. I think it has been approved for many years, and we know the side effects. But American GPs have greater rights to prescribe off-label than British GPs.

I believe the General Medical Council was consulted a couple of years ago about giving British doctors the right to prescribe off-label. That was strongly opposed by the pharmaceutical industry—I think we can all understand why—and the GMC dropped the proposal. American doctors can prescribe any licensed drug off-label if they feel it is in their patient’s best interest. British GPs do not have that right. So although there may be many people in this country being prescribed benztropine legally because they have Parkinson’s, the tens of thousands of us with multiple sclerosis, for whom it has been discovered the drug may work, cannot legally or properly get it. I hope that this Bill will be able to change that scenario. Ideally, the GMC should look again at its guidelines. Ideally, it should allow British doctors the same right to prescribe off-label if they think it is in their patient’s interest.

I was greatly heartened by the speech of the noble Baroness, Lady O’Neill, on participant-led research. I discovered a few years ago that the National Hospital for Neurology and Neurosurgery in London was about to conduct some clinical trials on the use of botulinum toxin. I persuaded, forced and blagged my way on to that study; I was patient number 51. We conducted the study and I signed every waiver under the sun. I was not interested in suing if something went wrong, but I wanted the hope that it would change and improve things. It did. That drug was life-changing in dealing with some of the side-effects of multiple sclerosis, and NICE has now approved it.

I assure your Lordships that in any study you undertake, in any research you do, you will find that there are tens of thousands of us, particularly those suffering the worst diseases such as motor neurone disease and Parkinson’s, who will volunteer to participate in clinical trials. We do not want to wait five years while another pile of mice and rats are experimented on. This rat is willing to become a guinea pig at very short notice.

I cannot see any medical harm from my noble friend’s Bill. I can see that there may be a loss of income for some in the legal profession, but my concern is to get medical treatment when I go to see my consultant or doctor—not to give a lawyer an excuse to sue my doctor if he gets it wrong. The medical profession is being held back, slightly, because of the fear of litigation. If my noble friend’s Bill allows more of us to participate in a rapidly organised clinical trial, or even to test out drugs that have been approved for one use and may be beneficial for another, we should be allowed to do so.

I have never sat in this Chamber or the other place and demanded rights for this or that, but those of us with some of these illnesses can make a contribution as we head to our eventual end game. It is not just trying any quackery or weird invention in desperation. There will be properly conducted trials along the lines of my noble friend’s Bill, with all the safeguards which the noble and learned Lord, Lord Mackay of Clashfern, suggested. I therefore support my noble friend’s Bill.