New Petitions

Thank you, convener. I start by giving apologies on behalf of James McKillop, who is the chairman of the Scottish dementia working group, and Andrew Banks. Both of them had hoped to be here, but for personal reasons they cannot attend. I am the co-ordinator of the group, and I do not usually speak on behalf of its members. Therefore, I ask David Turner to make a statement on our behalf. After David has spoken, I would like, if I may, to return to our script to read any paragraphs that David has not covered in his remarks, because David would have some difficulty in reading from a script.

Good morning to you all. I was diagnosed as suffering from Alzheimer's disease just over five years ago. At present, I am on a medication that I know as Aricept, although it has various names. I heard the convener mention one of them earlier. I call Aricept my wee golden ball. It costs about £2.50 to produce the tablet and to get it to me. The difference that it has made to my life and to the life of my children and family has been amazing. They had lost me: I did not know what day of the week it was, where I was or where I was going. I could not go out on my own; I had to be taken everywhere. Since I have been given Aricept, I have got my life back. I have been to see my MSP, Andy Kerr, about it. He felt that it made quite a difference to me, as I could sit and converse with him. My daughter burst into tears talking about it, because she remembers when I could not remember a thing and could not go anywhere on my own. It would be a tragedy if the drug were withdrawn. Therefore, I am here to ask the committee to ensure that it is prescribed to everybody who is diagnosed with Alzheimer's. It is a wonderful drug. That is all I have to say.

The Scottish dementia working group accepts that the medications do not work for everyone but it wishes to establish the principle that they should remain available on prescription in Scotland to anyone who might benefit from them for as long as they continue to benefit. We are concerned about the fact that, in at least one health board area, there is already a waiting list of people who want to be prescribed the medications. A National Institute for Health and Clinical Excellence report has suggested that the medications are not cost effective. We contest that and question the way in which NICE calculated the benefits. We can say without a doubt that the benefits in terms of the quality of life of members of our group who are on the medications and of their family carers are worth much more than the £2.50-a-day cost. We believe that the medications help to slow down the progression of the condition that our members suffer from, which must mean a saving in expensive social care to the health service and local authorities. I emphasise that these are the only medications that are currently on offer to people with Alzheimer's. The fourth drug that was considered by NICE, memantine—also known as Ebixa—works differently from the other three and can be of benefit to more people. At present, it is available on prescription in England and Wales for people with Alzheimer's but is not recommended for use by the Scottish medicines consortium. We would like that to change. Our fear is that, if no medical treatments are available, there will no longer be any incentive to diagnose the onset of dementia at an early stage. That would deprive future generations of the knowledge of what is wrong with them and prevent them from accessing the help of vital social support services.

As you say, based on the measures that it used, NICE found that the drugs were not cost effective. NICE has acknowledged that there is evidence of their clinical effectiveness for some people with Alzheimer's. The reason why it has not produced a conclusion to its consultation document, which came out in March, is that it wants to give the pharmaceutical companies additional time to produce further evidence about the targeting of the medications. In other words, it is aware that not everyone can benefit, but not enough is known about which people can benefit and which cannot. NICE has postponed its decision until December, although it originally said that it would make it in the early part of the summer. The delays are causing a considerable amount of unease and concern among people who could benefit from the medications. As I said, our position is that, if there is a possibility that someone could benefit from the medications, the medications should be made available to them until it can be determined whether they will benefit.

There are no alternative medications. If the NICE recommendations are approved and adopted by NHS Quality Improvement Scotland, which will make an independent decision on the matter, no medications will be available. That is why we fear that the incentive to undertake an early diagnosis will be much reduced.

I think that the name is public knowledge. I am happy to name it, although I am not happy for the area's residents: it is Lothian NHS Board. We know that, because the allocation of money for those medications has been exhausted, people in that area who are judged to have the potential to benefit clinically from the medications must wait to be prescribed them.

For £2.50—that is the cost of my prescribed Aricept—I have been given my life back, as I said. It has eased the burden on my family—on my two daughters and my son, who are bound to look after me. For that alone, it must be worth keeping the drug on the go.

I do not want to go down the route of carers. I have not been involved with or needed carers, because of the drug.

The methodology that NICE employed uses quality-adjusted life years—QALYs. The criticisms that Alzheimer's societies, including Alzheimer Scotland, have made of QALYs is that they take into account only the cost to the health service and are an inadequate measure of the improvements in quality of life. They look more at extensions in the span of life rather than at the quality of life. My colleagues in Alzheimer Scotland have produced a technical paper that we would be happy to make available to committee members, should they so wish.

That is correct.

I do not know how thorough organisations have been in assessing the medications. All that I can judge is the results for me. My children are astonished at the change in me in the period that I have been on the drug. I was completely gone. I was not allowed to go out on my own, because I did not know how to get home. Now I can go out and disappear for days and return when I feel like it. I do not have to be chased back up the road. East Kilbride—where I live—is a big place, and it is easy to get lost there, although if I was going to get lost, I would go elsewhere than East Kilbride.In all honesty, to remove the drug at this stage in its development would be a crime against society, because society would pay for looking after people who could not look after themselves.

To add to what David Turner has said, I am not aware that there are any serious side effects. The drug that is most commonly used in Scotland by people with Alzheimer's who are on medication—its common name is Aricept—appears to have few side effects. Aricept was introduced in 1997, so we have seven or eight years' experience of it, and the side effects are minimal. The other medications have slightly more side effects but, in my experience, people are withdrawn from those medications at an early stage, before there are any serious consequences for their health.

Not that I am aware of.

We hope that NICE will reach a conclusion at its meeting in December, but there have already been two delays, so the spring of next year might be a more realistic estimate. The responses that we have received, both from NHS Quality Improvement Scotland and from the minister, indicate that normal practice will be adopted—namely, that a decision will not be taken in Scotland in advance of an announcement by NICE. We would prefer it to be otherwise because of the consequences of the uncertainty. We understand that the Scottish medicines consortium is contributing to the process that NICE is undertaking through NHS Quality Improvement Scotland but that it will not make any moves or statements in advance of NICE's announcement.

The longer it takes to put people on the medication, the more the chances of its being effective for them decrease. I can assure members that it is effective, and it would be criminal to remove it from the public domain.

I do not know how they decide on its effectiveness. I can speak about the drug only on the basis of my own experience. I am a new person since I have been on the drug. Believe me: I was in a terrible state mentally, and my family were in a terrible state having to cope with me. Right at the beginning, when I got the early-onset diagnosis, I did not know what day of the week it was or where I was. I was frightened to go out, but the drug has restored my self-confidence as well as everything else. I could go on and on about it for hour after hour. The drug has got to stay or, somewhere, some day, people will have to answer as to why it was not kept.

I believe that it has to be trial and error. When I first got the medication, my doctor said, "We'll try you on this." I went to the southern general in Glasgow; that is where I was diagnosed as having early-onset Alzheimer's disease. Since I went on to the drug, I have had no bad effects from it, only beneficial effects.

The figures that were given in answer to a parliamentary question from Margaret Ewing in January 2004 may partly answer the member's question. They indicated that the most commonly used medication is the one that David Turner benefits from—Aricept, or donepezil. In 2002—the most recent period for which statistics were available at the time—some 19,000 people in Scotland were prescribed donepezil, or Aricept. The other two drugs in the same class of medication—rivastigmine and galantamine—were prescribed for about 10,000 people in Scotland. Another drug, which operates differently and has the potential to benefit other forms of dementia and also to be effective at later stages of Alzheimer's, had only just appeared on the market and is still not recommended for prescription in Scotland. However, at the end of 2002, 100 people in Scotland were on memantine, or Ebixa. To some extent, the figures indicate the nature of the judgments that doctors make, and Aricept is the most common prescription.

I cannot comment in detail on that. The practice of individual medical practitioners varies. Some of them are very enthusiastic. We have met several who prescribe medication in almost every instance and others who are more wary. I cannot comment on the extent to which economic decision making enters into the picture. It is very much a matter of medical practitioners making the decision unless, as in NHS Lothian, there is some constraint on the budget that restricts and modifies their clinical judgment.

One of your colleagues, Irene Oldfather, convened a cross-party group on issues relating to dementia and Alzheimer's just 10 days ago. A briefing consisting of three papers was prepared for that meeting, which was attended by 10 or 12 MSPs. We would be happy to furnish the clerk with a full set of those papers.

Thank you for hearing us.