Public Petitions Committee, 15 Dec 2009

Meeting date: Tuesday, December 15, 2009

Official Report 250KB pdf

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New Petitions

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Haemochromatosis (Screening) (PE1298)

The next item is consideration of four new petitions. The first new petition on which we will hear from contributors is PE1298, by George Scott, which calls on the Scottish Parliament to urge the Scottish Government to promote and support the introduction of national screening and a science-based diagnosis of haemochromatosis iron overload within national health service primary care—I thank our resident general practitioner for the accuracy of my pronunciation.

Let me welcome a number of individuals: George Scott, who is the petitioner; Dr Edward Fitzsimons, who is a consultant haematologist and head of department at Gartnavel hospital; and Dr Kathryn Robson, who is from the Weatherall institute of molecular medicine at the John Radcliffe hospital in Oxford. If this is their first time in front of a Scottish Parliament committee, I hope that the experience will be of benefit not just to them but to those of us at this end of the table.

The petition has attracted keen interest among elected members, so let me also welcome the Presiding Officer, Alex Fergusson—he is here in his capacity as an individual MSP, but I always like to mention his important role in the Parliament—and Jackie Baillie, who is another constituency member with an interest in the issue. I will allow them to contribute to our consideration of the petition at some point in the afternoon.

I invite Mr Scott to explain a bit further what lies behind the petition.

Convener and committee members, let me first thank you for agreeing to consider the petition.

Haemochromatosis was first discovered in 1935, which is almost 75 years ago. The disease has at least five forms, including neonatal and juvenile haemochromatosis. The mutation of the C282Y gene was identified in 1996, yet no screening of the condition is offered today in 2009.

The condition is easily controlled by venesection and the blood can be used for transfusion purposes—that would provide the blood service with a constant stream of donors once the patient was in the maintenance phase. Indeed, I note that another petition that the committee will consider today calls for the payment of blood donors. I confess that I was an executive director of the National Blood Service in England, so I know a bit about blood.

The condition has links to many other diseases, including multiple sclerosis, chronic arthritis, heart conditions, diabetes, Alzheimer's, dementia and terminal liver damage to name but a few. If there is time later, I will give a personal story about how I became involved in the condition.

Basically, diagnosis of the condition is currently carried out only at secondary care level, which means that it is done by people such as Dr Ed Fitzsimons. It is believed that considerable savings could be possible in the reduction of liver care at acute stage and in other related conditions. If we consider the fact that the condition affects one in 200 of the population and is carried by one in eight people—I invite anyone just to count the number of people in this room—that means that more than 600,000 people are carriers, yet haemochromatosis is often seen as a rare condition.

What would I like to happen with the petition? I will give you the bottom line. I would very much welcome the committee's help in persuading the Government to consider: first, introducing an increased awareness programme for primary care and the general public; secondly, offering parents the opportunity to have their children screened for haemochromatosis; thirdly, offering families of all confirmed cases screening for the condition; fourthly, introducing iron blood tests at primary care level, based on the general symptoms of the condition; and fifthly, and perhaps most important, setting up a patient registry in Scotland to quantify the penetration of the condition and setting up trials to help to determine the penetration and quantify difficulties with the introduction of adult screening. The Haemochromatosis Society, of which I am a trustee director, has offered to make a financial contribution to any such trial. We are prepared to put up some money to help the trial along.

I thank Alex Fergusson again for taking the matter forward in the first instance on my behalf. We are happy to answer questions.

I invite Alex Fergusson to comment.

Thank you. You will be pleased to know that I intend to be very brief—that is unlike me, I know. I wanted to come along today. Mr Scott is a constituent of mine, who contacted me to ask me to come and talk to him about haemochromatosis. I had never heard about it, but I went along one afternoon and—to be frank—I sat spellbound and captivated as he talked me through the condition and the level of ignorance that has surrounded it until comparatively recently.

What really struck me were the diseases and conditions to which haemochromatosis is linked. Mr Scott referred to some of those, which, as he pointed out, are only the tip of the iceberg; there are many other such conditions. The thought came to me that all those conditions cost our national health service a fortune in people's later years. Much of that cost—not all, but much—might almost be eliminated if the condition was picked up at an early enough stage. As I understand it, screening is easy and inexpensive and could have the most tremendous cost implications for our NHS, freeing up resources for other badly needed things.

Simply on that basis, I encouraged Mr Scott to bring a petition to the Parliament on the issue. We approached the Minister for Public Health and Sport, Shona Robison, who gave a perfectly sympathetic answer, but I thought that the issue could be pushed a bit further and more quickly and that a petition would be the right way to do that. I am grateful to the committee, as is Mr Scott, for considering the petition and hearing evidence on it, and I encourage members to probe the issue of the other diseases to which haemochromatosis is linked and the extraordinary savings to our national health service that could be made if the condition was picked up at an early stage.

Alex Fergusson said that screening is not expensive, which is interesting. I am not up to date with what is going on with regard to such conditions. How is screening done? Is there a genetic test? Will Mr Scott talk a little about that and say what the cost is?

You have to look at the issue in two ways. Initial diagnosis of the condition is done by quite a simple test. It is just a question of including additional tests in an existing blood test, to look at the amount of ferritin, which is the protein that binds the iron to the blood, that is saturated in the blood. If tests are run through the main laboratories, the cost is about 40p or 50p per test, because other tests are being done at the same time. If the test is done as a one-off, the cost is probably about £3. The big health service labs can do it for about 40p.

Is the process fairly automated?

Yes, it is automated. Most areas can do it easily because they are used to doing the tests. It is not a new test or one for which a separate assay is necessary; the assays are already in place. The genetic test is a bit more involved.

The cost of doing a genetic test at the moment can be anywhere from £50 to £100 depending on where it is done in the United Kingdom. However, if we break it down to how much the eggs, flour and sugar to do the test cost, it is less than £5. Because it is a genetic test, it needs to be done only once.

I can certainly see the cost effectiveness of the test if it prevents later complications.

The iron testing is simple; the definitive testing—the molecular testing for genes—is a bit more complicated. However, we could do the simple tests in the first instance. They are already in place in laboratories throughout the country and are easily done.

Are those tests done on someone who is not showing clinical symptoms at the time?

Yes. The tests would show the first evidence of iron loading. The condition is hugely common and, if it develops, it is destructive. I am not sure how many people in the room had heard of haemochromatosis before, let alone could spell it.

I had trouble pronouncing it, never mind trying to spell it.

From a clinical point of view, the disease is entirely preventable.

Perhaps we will touch on that point. I think that members want to pursue questions on it.

The petition says that

"recent surveys have shown a prevalence of 1 in 200 likely to be at risk of developing"

the disease. If a person is one of those one in 200, what is the probability of their developing the disease? What percentage of those people might be expected to develop it?

The authorities in northern and south-east France are ahead of us in that they have a registry so they can do those calculations. From the results that are coming out of there, it looks as though more than 30 per cent of males over the age of 30 to 35 who have two copies of the C282Y mutation will require treatment for their iron overload. The level in women is much lower—probably about 15 per cent—but you must realise that, until a woman is post-menopausal, she is less likely to develop the disease because she bleeds every month and, hence, she is self-treating in a way.

That sounds like we will be going back to the old days and will start bleeding ourselves.

Yes.

You said that the test can be added fairly simply to standard tests. Are there any points at which children could have blood tests, or standard tests into which the test for haemochromatosis could easily be fitted?

I believe that five genetic tests are already carried out on newborns with the initial heel-prick test and I do not see why parents could not be offered a sixth one to determine whether the child is likely to present with the symptoms of haemochromatosis later in life. We could catch sufferers early enough to ensure that they would avoid that. There is also the possibility of diagnosing juvenile haemochromatosis, which is much more serious because sufferers are fully loaded when they are born and, therefore, develop iron overload not in their 20s or 30s but immediately.

Screening newborns would catch two populations. Not only would it catch juvenile sufferers and prevent them from getting seriously ill in their early years but, as soon as we had identified someone with two copies of the gene—someone who was a homozygote for the condition—we could start to direct them towards becoming a blood donor. They could give blood, which could be used by the transfusion service because there is no risk of transferring the condition as it is genetically inherited. That way, they would never get to the point at which they would overload on iron, so all the associated conditions would reduce. I cannot say that they would all disappear, because other factors are involved.

Why not, at an early age, give someone the best opportunity that they can be given in life when it costs very little to test them?

So the test could be added to a standard suite of tests that already exists for minimum cost.

It could be added to the screening of newborns. However, one of the problems that we have experienced in trying to set up a programme to screen for the two copies of the C282Y mutation is that ethicists argue that newborns should not be screened for a disease that will not affect them until they are adults in middle age.

You have said that a male homozygote has a one-in-three chance—which is very high—of developing the disease.

Yes, but in the classical form of the disease, that person will not begin to show biochemical signs until their late 20s or early 30s—for example, the standard test for the amount of iron in the body will not show elevated values until then.

But if someone is aware that they have that problem, they might start giving blood in their early 20s.

You would never see elevation in iron levels at that age, and a person would be unlikely to get the complications at that time. Members of the Haemochromatosis Society have said that they felt much better, psychologically and physically, after giving a pint of blood, and it was not until many years later, when they stopped being a blood donor and started accumulating the iron, that they found out why that was the case.

So—to return to the question of ethics—not testing people early on may increase the probability of their having the disease later on.

Exactly. It is a catch-22 situation: do we test early, keep a record and give a recommendation, or do we test much later, when somebody may already have developed joint damage? Such damage affects the knuckles and can affect the large joints, and it is often irreversible. Some people with untreated haemochromatosis require hip replacements because of the damage that the disease has done to their hips. If a cost prevention strategy can be developed, screening may well cut costs in terms of the hospital beds that are needed for patients undergoing serious surgery.

I find it difficult to get my head round some of these issues.

The petition states that a screening policy for haemochromatosis is needed. However, the Scottish Parliament information centre briefing states that in 2006, the UK national screening committee

"concluded that screening for the condition should not be offered."

From what you have all said, that decision seems to be illogical. Did the NSC give any reason or rationale for why screening should not be offered at that stage? I know that the NSC has been reconsidering the issue since August this year, and we can perhaps feed into that process.

I spoke to Anne Mackie of the NSC last week. The rationale behind the decision centres on the question of what to do with the 60 per cent—the two out of three people—who do not develop the disease. At present, we cannot distinguish at an early age those who will develop the disease from those who will not. Anne Mackie wants a test that will allow her to discriminate between all those who will develop the disease and those who will not.

At present, we suspect that other genes are involved, but we do not know what they are. We cannot say, "Right, if somebody's going to develop the disease, they will show two oranges, a lemon and an apple". All we currently know is that two oranges are needed; we do not know what the other slot machine bits are.

Are you saying that there should not be a screening policy?

I am saying that we cannot afford for there not to be a screening policy.

In other words, you are saying that there should be a screening policy.

Yes, because the condition is so common. If it was very rare, one might argue that screening would not be cost effective, but because it is so common—

So you disagree with the NSC's 2006 decision because their rationale appears irrational to you, and you believe that the rational thing to do is to screen.

Yes.

Do not worry—that is what I thought you were saying.

My questions have more or less been answered. However, I inferred from what you said earlier that you feel that the ethics people are in danger of having got their ethics the wrong way round.

Yes.

My second question is about comparative costs. How would the screening that you propose compare with grand-scale things such as flu vaccines for the entire population, or for all over-65s?

The cost of a flu vaccine is about £50 per person—correct me if I am wrong, but that is my guess. If that is the case, the screening that we propose is probably cheaper.

A lot cheaper.

Remember that the flu vaccine protects only against those flu viruses that are currently in circulation, not against something new that is not in the vaccine.

That cheers me up.

We hope to take small steps today—first and foremost, to increase awareness of haemochromatosis. For all that one in eight of us here will be a carrier, I happen to know that there are three homozygotes sitting here today, one of whom is well known to Real Radio.

The first step is to think about screening adults. That makes it easier and it is also a simpler test. Of course, the definitive test would be the molecular test. We are still trying to reach the Scottish population in whom haemochromatosis is embedded, but who are largely ignorant of it. We should keep our ambitions humble and say, "Look, let's get this message out—we are a population at risk of the toxicities of iron in our liver, pancreas, heart, skin and joints, and there's a lot of it."

You have been wonderful witnesses because you have thrown lots of numbers at us; people tend not to have the figures available in that way. It strikes me that given the numbers that you have at the top of your mind and the ones in your back pocket—or stored somewhere—you could probably generate a credible number for the national cost of not screening because you know the risks of the incidence of other conditions and you can apply a sensible cost to not screening. I know that that figure would come with a large number of noughts on the end and a good deal of uncertainty, but if you could put such a number in front of the health minister she might take a deep breath and say, "Yeah".

Before we get to that stage, I would not like to present the Government or anyone else with figures that we could not back up. We have to start by developing a registry that captures the information. From that registry, we will be able to determine how many people go on to develop serious or fatal complications from the condition. I would not wish to put together some numbers without having ground-based evidence for them.

Haemochromatosis is one of those conditions that has drifted for years and everyone has said, "Oh yes, we are aware of it." Even the reply that I got from Shona Robison said, "Oh yes, everyone is aware of this condition." If I asked a GP whether they knew what haemochromatosis was, the GP would probably make the association between haemo and iron and say, "It must be an iron condition—I'll just look it up." They would find that it is a genetic iron overload condition. Haemochromatosis covers numerous iron overload conditions; we are interested in the genetic part of the condition and its on-effect on people.

My situation is not unique. I have the condition—I have the two copies of both genes—and I overload on iron. My father had the condition. He presented at the Royal infirmary in Glasgow in 1977 with haemorrhoids that required a simple procedure to resolve. He died of cirrhosis of the liver on St Patrick's day 1978. I nursed him for months and months. It was painful and slow and he died in a lot of agony because of the liver failure. He could not get a liver transplant.

The one thing that totally skewed the diagnosis was the fact that my father was the manager of a pub in Glasgow. My father did not drink alcohol—he hated alcohol—but it is easy for someone to make the association between alcohol and liver damage because, like haemochromatosis, alcohol suppresses a substance in the liver called hepcidin, which controls the absorption of iron from the duodenum. Because of that, the doctors easily assumed that my father was an alcoholic, although he was not.

The story does not end there, however. In 1994, I experienced tummy problems. Many people who have haemochromatosis present with a gut ache that does not go away. I went to my GP, who could not discover what was wrong. I changed GP to a nice gentleman who said, "I'm going to try every test in the book to find out what's wrong with you, George." He put me in touch with a gastroenterologist, who examined me and said, "You are perfectly healthy, George, but—". When he said, "but", a fear crept down my spine. I said, "What's the but?" He said, "You have an incurable condition called haemochromatosis."

I went out of that office thinking that I had better write my will. That is how it affects people. I act as a counsellor for the Haemochromatosis Society in Scotland. Every week, I get phone calls from people who have recently been diagnosed. Every one of those people is in a depressed state; some are almost suicidal. I spend huge amounts of the day talking to them on the telephone—I rack up huge telephone bills ringing them back to try to convince them that their lives are not over and that there is a lot that can be done.

However, after I was diagnosed in 1994, I spent 18 months attending a hospital in Oxford—every Monday at 4 o'clock—so that blood could be taken from me and, during that time, I was the most miserable I had ever been in my life. I was just going to work and trying to make sure that I could function.

I am here today to say that, if we can catch the condition early enough and do a simple blood test to determine the transferrin saturation and the total iron-binding capacity, we can say to sufferers, "You are overloading on iron, but we can do something about it." That will mean that a person's condition does not become so serious that they stop functioning as an individual. That is what can happen, and thousands of people in the UK, not just Scotland, are in that position.

How widely known is the condition among GPs? You said that it is possible for a GP to look up the symptoms in a textbook, but people tend not to go to a doctor and say, "I think I've got this condition and I would like you to diagnose me."

The Haemochromatosis Society has 170 members, and I have spoken to them all about how they were diagnosed. In none of those cases did the GP know what the condition was; only when the symptoms are referred to secondary care and people see practitioners such as Dr Fitzsimons is the diagnosis made. Around 40 per cent of sufferers are referred by a gastroenterologist, because of the duodenum issue.

Primary care practitioners know what haemochromatosis is, but if you ask them whether they carry out any tests for haemochromatosis or the conditions that are associated with it, they tell you that they do not. GPs run a series of blood tests to capture information about a patient's cholesterol level and so on. With only a few more boxes to tick, the GP could also test to see whether the patient is overloading iron. It is as simple as that.

My clinical practice is in west Glasgow. Even in that small area, I continue to see one or two new cases of florid haemochromatosis presenting every month. The curse is a lack of awareness of the condition. There is almost a Scottish perverseness to it. Sometimes we speak to relatives who we know to be at high risk and we tell them that they need to be screened, but they will not go to get screened. We must deal with that by increasing awareness and emphasising the fact that the problems are preventable.

Mr Scott talked about his father's condition and the diagnosis of cirrhosis of the liver, rather than the condition that his father was actually suffering from. That could provide an explanation regarding a number of individuals who have died over the past 40 to 50 years. More of them have been diagnosed as alcoholics, rather than with what is a serious medical condition. Mr Scott's examples should prey on all our minds as we try to deal with the issue and take it forward—as I hope that we will do.

Dr Robson mentioned the extensive approach that is taken in parts of France. Are more people in Scotland predisposed to the condition compared with people elsewhere in Europe—in France, for example—or elsewhere in the UK? What is the differential?

In Ireland and parts of Scotland, one in eight to one in 10 people are carriers of the C282Y mutation in the HFE gene. In southern France, the proportion is much lower. There is a gradient, and the highest proportion of people carrying the mutation are in Ireland, Scotland, England, Wales and Brittany. It is very much a Celtic mutation. Between one in 200 and one in 300 people—one in 50 in some parts of Ireland and Scotland—are genetically at risk. If we take the 129 MSPs and their partners, one of those people might have the C282Y homozygote, and they could be in the early stages of developing the disease.

It is interesting to get a sense of scale.

I am interested in the subject—in effect, I am one of your patients. When you have made a diagnosis and confirmed the condition, how do you treat the individual?

Treatment is fairly straightforward. It requires getting iron out of the body, although the body does not release iron easily. There are only two methods that I am aware of by which it can be done. One way is by venesection—removing blood, after which the haemoglobin in the body calls on iron from the iron stores. The second way is chelation therapy, but that is not really recommended for haemochromatosis. The easiest, most cost-effective approach is simply to remove blood.

It depends on how high the levels go, but a person initially requires weekly venesections; then, they go into a maintenance phase. That is controlled by keeping the ferritin at a certain level, which is 50 micrograms per litre, according to the guidelines. I usually have a blood test every two or three months to determine the ferritin level, and the treatment is done by venesection—the blood is just removed.

It is very simple.

Yes, it sounds it.

Thank you, convener, for the opportunity to speak on this matter. I commend to members yesterday's edition of The Herald, if they have not already seen it. It contains an article by Torcuil Crichton, who himself has haemochromatosis. It is an accessible article, and the following comment captures the condition:

"the amount of iron in … a rare steak is minuscule compared to my internal Ravenscraig".

That shows the scale of the problem that people with haemochromatosis experience.

The issue is simple: as the committee has heard, screening is not difficult and it is cost effective. I cannot remember when someone last said to me, "It only costs 50p for each test." We know that it costs the health service thousands upon thousands of pounds to treat some of the acute conditions that can develop from this condition, so there is in my mind no doubt about the cost-effectiveness of screening. What struck me in the presentation is that the conditions are entirely preventable if diagnosed early enough. I will do something that I do not often do, which is agree with Nigel Don and, indeed, with John Wilson— this must be a red-letter day.

The committee should suggest to the minister that we have pilot screening in one health board area. That would provide an opportunity both to raise awareness among GPs in a controlled fashion, and to measure whether that has an effect because, of course, it is not for the GP to diagnose but to say, "Here are some conditions that may well lead to this. We will send for a blood test." It is as simple as that. A pilot would allow the Government to conduct a very rigorous cost-benefit analysis to underpin the decision that I hope it will take, which is to introduce a national screening programme.

I do not know whether Nigel Don or John Wilson's blood pressure went up on receiving that commendation.

Jackie Baillie has to realise that we are all very agreeable people on this committee.

I have always known that.

I think everyone agrees on the petition. One would have had to have not listened to do otherwise—we were all rapt and attentive. Jackie Baillie's suggestion for a pilot screening programme in one health board area as a precursor to a national screening programme and science-based diagnosis of the condition is something that we should suggest to the Scottish Government.

We also need to talk to the UK National Screening Committee to ask when it expects to conclude its consultation on the policy review, and whether it would take the petition as a contribution to that review, in the hope and expectation that it will change its position from that which it took in 2006, and that it will heed expert advice, in particular that of Dr Robson. We should ask the NSC, in the light of the survey that it is undertaking, whether the incidence of haemochromatosis has increased over recent years, what testing for the condition currently takes place and by whom. That would move the issue forward. There will obviously be other suggestions from colleagues.

Are there other comments or suggestions on how we want to pursue the issue? Witnesses will sense from what we are saying that we support exploring whether we can make progress on the petition. Dr Fitzsimons identified a gradation in how we deal with the issue, so that is something on which we can try to open up discussion. We need to make contact with Scottish Government representatives and appropriate national bodies that take an overview.

I suggest to Dr Robson that it would be helpful, if there are other statistical data that would help our exploration of the issue, for the committee to receive those. Comparisons would also be interesting, as I am worried about the gene pool issue in Scotland and the shape of our make-up, which seems to mean that we are more predisposed to such illnesses. That is a pattern that we are finding at this committee.

Certain environmental risk factors are associated with the disease, which mean that some people have a genetic predisposition to develop haemochromatosis. Alcohol consumption and obesity also contribute to that. If a population tends to enjoy the odd dram, they are not helping themselves.

We have no idea who you might be referring to there, what with me being strictly abstemious—as I will be tomorrow night. Are there any other ideas about with whom we could explore these issues?

It is important to ask the Government pertinent questions about the level of awareness among GPs, levels of testing, what action it has taken—if any—and, in the light of the evidence that we shall be presenting to it through the petition, what action it intends to take.

It would be good to get a response from the Scottish National Blood Transfusion Service, the British Society for Haematology and the molecular haematology unit.

You mentioned France, Dr Robson. Are there any other international comparators?

The Australians have a group in Melbourne. If you are looking for scientific papers, the first author to look for is called Katie Allen. The Australians have found that 30 per cent of adult males who have the C282Y homozygote go on to require treatment.

Some of the notes that we looked at in preparation for this meeting mentioned a Canadian society as well. Would it be appropriate to contact it?

Yes. It is fairly active and keen to move forward with a screening programme. That is the feedback that we have been getting.

I have a point to make to Mr Butler, who asked whether the disease is penetrating more into society. In 2000 in Ireland, the penetration was one in 200, and in 2009 it is one in 64. Because of the one in eight people who have one copy of the gene, that trend is going to continue.

It is interesting if Australia and Canada have a significant incidence of the disease because quite significant parts of the populations of those countries originated here, so maybe the genetic thing is part of it.

Some screening has recently been carried out of 15 to 16-year-old children in 32 schools across Australia. What was found was absolutely consistent with the kind of numbers that we are experiencing here. The screening was done using cheek-brush DNA testing, and it covered 10,000 children.

Based on Dr Robson's comments, I suggest that we also contact the medical ethics committee to ask for its view. It would be useful to find out whether it still holds the same view, and if it does, why. Mass screening at an early age would clearly be beneficial to everyone concerned.

Okay. We have identified a number of actions that we want to take on the petition. We hope that they will further benefit exploration of the issues. The petition will return to the committee along with information, we hope, that will allow us to take it to the next stage and get some more proactive responses from the various individuals and organisations. I thank all three of the witnesses for their time this afternoon. We hope to make progress on your behalf.

Meeting suspended.

On resuming—

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Ur Dùthchas (Land Tenure) (PE1297)

The next new petition is PE1297, by Ranald Alasdair MacDonald of Keppoch, which calls on the Scottish Parliament to urge the Scottish Government to investigate Scottish land ownership and tenure under the ur dùthchas, or native title, system of land tenure. Background information has been provided. Do members have any comments?

I thought that English land law was complicated. It is. I guess that all that we can do is hold up our hands, probably collectively, and say that we have never heard of the issue. Someone might correct me, but I suspect that the issue is new to all members. On that basis, we have to ask the Scottish Government to investigate what is being said and come back with a view.

I agree with Nigel Don. The law seems to be a very complicated one from centuries back. We should ask the legal people in the Scottish Parliament to clarify the situation.

We should also ask the Law Society of Scotland to help us out.

We also need to write to Registers of Scotland and the Scottish Land Court. I also suggest that we write to Andy Wightman, who has written several books on land ownership in Scotland, to ask whether he is aware of the issue that is raised in the petition and whether the law still applies in Scotland today.

We want information on the subject of the petition in order to find out whether we can respond more effectively to it.

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Myoclonic Dystonia (Care Standards) (PE1299)

The next petition is PE1299, by Geraldine MacDonald, which calls on the Parliament to urge the Government to set national standards of care for all myoclonic dystonia sufferers, and to issue guidance to local authority social work and housing departments to ensure that they provide adaptive service provision and environmental adaptations to sufferers based on a fair assessment of their condition. We have had several similar petitions, on which we have explored particular issues. Do members have comments?

This is another very worthy classic case that indicates the postcode lottery of care throughout the country for people who have various health conditions. Standards of care tend to vary significantly. I do not know whether there is a National Institute for Health and Clinical Excellence guideline on treatment of the condition, but we should ask questions about it.

This is another relatively new issue for all of us. We need to explore how different local authorities respond to individuals' presenting with the condition. We should certainly write to a selection of local authority social work departments. Are there any other suggestions?

We could write to the Scottish Government to ask whether it will set national standards of care for all sufferers and whether it will issue guidance to national health service boards and local authorities to ensure that we have a consistent and uniform approach.

I notice that there is the Dystonia Society, which I presume has a lot of knowledge about the condition, so it would be worth seeking its opinion.

We should write to the Association of Directors of Social Work and the Social Work Inspection Agency. I reiterate the convener's point about writing to local authorities. I assume that one of them will be North Lanarkshire Council, given that the petition emanates from that area.

No problem. Again, we want to process the petition and get the responses in.

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Scottish Water (Executive Bonuses) (PE1300)

The final new petition is PE1300, by Drew Cochrane, which calls on the Parliament to urge the Government to issue a direction to Scottish Water under the Water Industry (Scotland) Act 2002 to discontinue the practice of paying bonuses to its senior executives. One or two members might wish to give their views.

I am not against bonuses per se, but the bonuses seem, on the face of it, to be wholly excessive. The papers show that the top person—Mr Ackroyd—has a salary of £263,000 and a bonus of £101,000. Other senior people in the organisation also receive very large bonuses. We should write to the Scottish Government with a number of questions. Does it support the practice of awarding high bonuses on top of much higher than average salaries? If so, why? What is the evidence that such levels of bonus are reflected in better productivity? Is this practice socially valuable? Does awarding such bonuses retain people of very high talent? I have never been persuaded of the argument that bonuses should be paid in any field—to bankers, for instance, although I do not really want to bring them into the debate. We should also ask whether the absence of such levels of bonus means that senior executives are less productive. What is the evidence on all of that?

I note from the background papers that Scottish Water executives are being paid top dollar—they are getting a great deal of money. At a time when the bonus culture has been thoroughly discredited, why should we pay well-paid public officials between 35 per cent and 50 per cent of their already very generous salaries as a bonus? On the face of it, the petitioner has made a very good point. We should pursue it.

Over the past couple of decades, the strong and growing evidence—indeed, it is a massive body of evidence from a wide range of scientific research—is that inequality in society is actively damaging to society. There are clear links between inequality and shorter life span, not only for the poor but the rich; inequality and crime; and lower levels of trust and social cohesion. Bill Butler asked what the social value of bonuses is—I suspect that he did so rhetorically. My answer is that large bonuses are socially damaging—they increase levels of inequality in society.

Obviously, Scottish Water has been paying these bonuses for some time—I think that the original contracts date back to 2002—but there is no time like the present to deal with the matter. We should approach the Government and ask whether such bonuses are healthy for our society. Bill Butler may not have spelled this out, but he clearly hinted at it: we do not need to pay these vast salaries to ensure the best people. Indeed, it is notable that there is no correlation whatever between the wage of the chief executive officer of a commercial company and the success of the company.

I support everything that my two colleagues have said thus far. In widening the debate, I thank Kenneth Gibson MSP for supplying the table that we received today on the benefits that these senior officials also receive. I refer in particular to Scottish Water's long-term incentive plan for its senior executives. As the table clearly shows, we seem to have got into a culture of paying senior executives bonuses on top of bonuses on top of bonuses on top of benefits on top of fringe benefits without any clear justification for doing so.

I also sit on the Local Government and Communities Committee, which has heard much evidence on the value that Scottish Water places on its incentive schemes and how it operates a lot better nowadays than it used to. That said, the salaries that some Scottish Water executives receive have almost doubled in five or six years. Why is a public sector body paying large bonuses to its senior executives at a time when it is also paying off some of its lowest-paid workers? I know that that is the case. I ask the committee to consider that matter. We should ask the Water Industry Commission for Scotland, Waterwatch Scotland and the Scottish Consumer Council whether they think that those bonuses are justified and, if so, how.

I hope that we can progress the matter. The bonus culture is not only creeping into Scottish Water in the public sector; it seems to apply in a number of areas. Scottish Water, which the petition is about, is just the tip of the iceberg. We seem to have fallen into having a bonus culture without there being any reason behind having it. I ask members to progress the petition.

As has been said several times, it is not only Scottish Water that has a bonus culture. I wonder whether it might be appropriate for this committee or another parliamentary committee to run a full-scale inquiry into bonuses in Scotland.

I am tempted to make a short political comment. The money in question currently comes out of the public purse, but it would not necessarily have to come out of the public purse if my party's policy were followed. However, I agree with what has been said about the bonus culture in general.

My good colleague Nanette Milne should not be so shy about saying that her party's policy is privatisation of Scottish Water. Some time ago, a referendum was held in Strathclyde that showed that 90-odd per cent of people were against that. I am a democrat and I am for minority policies being able to be put forward and then defeated.

Such bonuses in the public sector are just as unacceptable as they are in the private sector. The whole bonus culture is wrong-headed. My constituents and, I am sure, other members' constituents cannot for the life of them fathom the rationale for that culture having been allowed to grow in the public and private sectors. I agree with them. I cannot fathom the rationale, either.

To try to be helpful, we should also write to Scottish Water and ask it to set out its rationale for its approach and to defend itself. On the face of it, it seems to me that what is happening is indefensible. A letter to Scottish Water should form part of our initial correspondence. People are sick to the back teeth of a bonus culture that does not connect with any kind of reality that they experience in their day-to-day lives. However, I would not want to be political about the matter.

In some ways, the petition does not go far enough. I argue that we should pay according to ratios in public bodies. We should limit the payments to the top paid to a ratio of what the lowest paid receive.

I noticed in The Herald today that a consultant has called for top consultants to take a wage cut. The consultant said that a more unequal society also creates a less comfortable environment for the wealthier. In our letter, perhaps we could draw Scottish Water's attention to the consultant's comments. We could suggest that its senior executives might want to make a similar sacrifice, which would benefit them in the long term. Let us not forget that the rich also die younger in a more unequal society.

For the record, I hope that Bill Butler noted that I agree with him on the bonus culture.

For the record, I accept that Nanette Milne said that, and I hope that she accepts what I said in the way that it was meant.

Okay.

Let us explore the issues that the petition raises. I am not sure that we can reach a conclusive decision today on Robin Harper's suggestion, but I would like members to think about it. We are talking about a public interest issue and public resources, never mind the broader debate that we should have about how people are rewarded in our society. Yesterday, Ricky Gervais said that he is being rewarded extremely well for doing certain things compared with what people who work in the health service or the public sector receive. He does not see the logic of that; the only logic seems to be that he is in the entertainment industry. Mind you, I observed that that did not stop him having a £3 million house. That was quite comic.

We need to have a debate about this issue, because it is clearly of concern to the wider public. Even if there is justification for bonuses—which may well be disputed by members around the table and by the wider public—that justification has not been demonstrated. We want to explore that. We can perhaps think about it and discuss with the committee clerks whether other committees wish to explore it, too. We might wish to bring the petition back. I am conscious that Scottish and UK ministers have made public statements about these issues.

I support the idea that we have some sort of parliamentary inquiry into what has been described as the bonus culture. We have to recognise that although, in our minds, there might not be much scope for paying bonuses to people who are just paying out public money to do things, there is a completely different side to life, which is that people in enterprise businesses who are making profits, and taking risks to do so, should not immediately be debarred from deriving some benefit from having made good decisions. There are places where bonuses or performance-related pay might be entirely appropriate. The bit that we, and the public, are struggling with is where bonuses are paid for disbursing public funds.

Or for failure in the private sector.

We would like to explore that. We might want to bring back some observations early in the new year.