Hepatitis C
Good morning. The first item is a Scottish National Party debate on motion S1M-1865, in the name of Nicola Sturgeon, on hepatitis C, and one amendment to that motion.
I am pleased to have the opportunity to debate this issue. Compensation for patients, most of them haemophiliacs who were infected with hepatitis C through contaminated blood products, is an issue I feel strongly about, as do many other members from all parts of the chamber. It is important to put on record the background to a set of circumstances that—for those affected—amounts to a human tragedy. There are around 300 haemophiliacs alive in Scotland today who, during the 1970s and 1980s, were infected with hepatitis C because they were treated with blood products that were contaminated with the virus.
Contracting hepatitis C is devastating for individuals and for their families. Ken Peacock, one of those who have been infected said, when giving evidence to the Health and Community Care Committee:
"I have severe haemophilia, but I can tell you something: when someone tells you that you have … hepatitis C your whole life changes."—[Official Report, Health and Community Care Committee, 14 March 2001; c 1631-32.]
There is undoubtedly a stigma attached to hepatitis C. People who have it live with the constant worry—even though the risks are small—of infecting those close to them. They find it virtually impossible to obtain life insurance or even mortgages, except at prohibitive rates. The physical effects of hepatitis C can be severe and, in some cases, life threatening. Hepatitis C can cause chronic fatigue, making it difficult to hold down employment. Up to 80 per cent of sufferers will develop chronic liver disease, of whom 25 per cent will end up with liver cancer.
There has been and no doubt will continue to be a debate about whether the national health service could have done any more in the 1980s to prevent what happened to at least some of the people who were infected. Many people will argue that the heat treatment that is capable of killing the hepatitis C virus in blood products should have been introduced in Scotland earlier than 1987 given that it was available in England as early as 1985. People will also argue that, until such time as effective treatment was possible, blood products could have been screened to reveal the existence of the virus. It can further be argued that patients should have been given better advice about the risks involved in treatment with blood products. Although hepatitis C was not isolated as a virus until 1989, it was known about much earlier than that; it was known that a virus—at that time known as non-A, non-B hepatitis—could be transmitted through blood.
I do not intend to go into all those issues today, except to make the point that a Scottish Executive inquiry has been the only investigation of them to date. The report that was published as a result of that inquiry, which is referred to in the Executive amendment, concluded that there had been no negligence. Certainly, I have no evidence to suggest that the report should have reached any other conclusion, but we must be aware that the inquiry was, in effect, an internal inquiry conducted by the Scottish Executive into one of its agencies, the Scottish National Blood Transfusion Service. The Haemophilia Society and the 70-plus MSPs of all parties who signed Brian Adam's motion S1M-323 on a hepatitis C inquiry believe that there is a strong case for a public inquiry. I hope that the Executive will reflect on that.
The question on which I will focus is whether people who are infected with hepatitis C through contaminated blood should receive compensation or financial assistance, regardless of whether negligence can be proved; in other words, whether there should be no-fault compensation for the loss that they have suffered as a result of being treated with contaminated blood.
The Scottish Executive's position to date has been quite straightforward. I quote Susan Deacon, in evidence that she gave to the Health and Community Care Committee last October:
"The NHS not paying compensation for non-negligent harm is a generally held principle."—[Official Report, Health and Community Care Committee, 25 October 2000; c 1260.]
I do not dispute that that principle is generally held or even that it is generally right, but it has been departed from on a number of occasions in the past. The most recent example occurred earlier this year, when the Government awarded compensation on a no-fault basis to the families of victims of variant CJD. However, of most relevance to the people who were infected with hepatitis C is the Macfarlane Trust.
The Macfarlane Trust was set up in 1988 by the then Conservative Government to compensate and provide financial assistance to haemophiliacs who were infected with HIV through contaminated blood products. To receive money from the Macfarlane Trust individuals do not have to prove negligence on the part of the NHS; they must simply show that their illness is attributable to treatment with contaminated blood. The payments are made not because the Government accepts any legal responsibility, but because the Tory Government in 1988 believed—as the Labour Government does now—that the Government had a moral responsibility to compensate those who contracted a devastating illness through treatment on the NHS. Why should the distinction be made between haemophiliacs whose blood treatment gave them HIV and other haemophiliacs whose treatment—perhaps given on the same day in the same hospital—gave them hepatitis C? No convincing argument has ever been put forward to support such a distinction.
Ministers frequently talk about the stigma and the public fear that was associated with HIV in the 1980s—back then it was a virtual death sentence. I do not for one minute diminish the devastating effect of HIV on those who have it and on their families, but hepatitis C is also devastating. Perhaps it is less devastating than HIV—I dare say that that is a matter of debate—but if the only difference is one of degree, that should be reflected in the amount of compensation or financial assistance that is awarded. It is no justification for denying any financial redress for people who were infected with hepatitis C. The debate is fundamentally about equity and fairness—and the case is overwhelming.
Although the recent English High Court judgment should, for a number of reasons, be treated with great caution—not least because it is an English court judgment—it contains an important principle that adds moral weight to the case for no-fault compensation for all haemophiliacs who were infected with hepatitis C. The judge said that people were entitled to expect clean blood on the NHS. He said that if the blood or blood products that people received were defective and they suffered harm as a result, they had a right to be compensated without the need to prove negligence. If that is right in principle south of the border—it is worth saying that there is to be no appeal against the judgment—surely it is right in principle in Scotland as well.
Let me say that I am greatly encouraged by the terms of the Executive amendment. The SNP called today's debate because we were concerned that the Minister for Health and Community Care, in a written answer on 5 April, signalled that she had no plans to review her decision on compensation in the light of the English judgment or in the light of the views that the Health and Community Care Committee may express in due course. Today's Executive amendment marks a significant shift from that position, which I welcome.
However, I want to express one concern about the Executive amendment, on which I hope the minister can offer some reassurance. The amendment talks of examining the implications of the English High Court judgment. Although I welcome that, we should remember that even if the judgment were implemented in full in Scotland, it would result in compensation only for people who were infected with hepatitis C after 1988. Most, if not all, haemophiliacs in Scotland were infected before that date. The danger would be that, as well as the unjust distinction between those who were infected with HIV and those who were infected with hepatitis C, we would create a new division between those who were infected before 1988 and those who were infected after 1988. That would be wrong. I ask the minister to reassure me that the welcome further examination promised in the amendment will apply to all haemophiliacs infected with hepatitis C, irrespective of whether they were infected before or after 1988.
This is not a party political issue. It is an SNP debate, but MSPs from all parts of the chamber have expressed support in a range of ways for the affected haemophiliacs. It is about fairness and justice. A group of people in Scotland—albeit a very small group—have so far been denied justice. We can start to put that right today and I hope that we do just that.
I move,
That the Parliament calls upon the Scottish Executive to review its decision to refuse compensation or financial assistance to patients who contracted hepatitis C through NHS treatment with contaminated blood products.
I welcome the opportunity to debate this important and sensitive issue. I am conscious that, in a short debate, we will be unable to do justice to the complexities of the issue. For that reason, I am pleased that the Health and Community Care Committee continues to examine the matter in greater detail.
Primarily, this is not a legal or a political issue; it is a human issue. Susan Deacon and I share absolutely the concern that has been expressed about the human consequences for individuals who suffer from hepatitis C and their families. Those individuals must receive the best possible care and treatment, which is why we have targeted additional investment and effort to the causes, treatment and prevention of hepatitis C. We recognise also the particular tragedy of those who contracted the infection through blood transfusions and blood products when medical and scientific knowledge was considerably less advanced than it is today.
As members know, Susan Deacon was especially concerned at the suggestion that the Scottish National Blood Transfusion Service could or should have acted sooner in the 1980s to introduce the heat treatment necessary to eliminate hepatitis C from the blood-clotting agents that are essential to the health, and often the survival, of many people with haemophilia. That is why she commissioned an investigation into the sequence of events in the mid-1980s. That examination found that, given the level of scientific knowledge at the time, the SNBTS could not have eliminated the risk any sooner than it did. The report, which was published last October, found no evidence of negligence or of a failure to act. I am therefore disappointed that Nicola Sturgeon is still suggesting that fault was involved. I refer her to the independent expert, Professor Mike Greaves, professor of haematology at the University of Aberdeen, who said that it was
"a carefully researched and detailed report"
and
"a thorough and balanced assessment".
As politicians with an interest in health—and especially as health ministers—we have a responsibility to do all that is in our power to reduce the risks involved in medical procedures and treatments. Risk, however, can never be eliminated. Sadly, a potentially life-saving drug, blood transfusion, operation or other procedure can often have tragic consequences through an individual adverse reaction or, as in these cases, an inadvertent or unknown side effect.
Will the minister give way?
Perhaps later on, but I am up against the clock.
All medical treatment involves, to some extent, the calculation of risk, including the risk of not undertaking the treatment. Every health care system and every health care professional has to grapple with how that risk is managed. Successive Governments of different political persuasions have adopted the general view that the NHS should not offer compensation in cases of non-negligent harm. Time and again, politicians and the medical profession have revisited the issue but on each occasion the same conclusion has been reached. The contrary view not only has cost implications for the NHS but, more crucially, might have adverse effects on clinical practice, the development of drugs and therapies and patient care throughout the health care system.
Nicola Sturgeon is right to indicate that the recent judgment by Mr Justice Burton in the English High Court is significant, in that it does not concern itself with negligence. It is a long and complex judgment—the summary alone covers 40 densely printed pages. Members who are interested will want to read it for themselves—it is not for me to give an authoritative summary of the case—but the main point is that the court found in favour of a group of plaintiffs who had contracted hepatitis C through transfused blood. It is worth pointing out that the SNP motion, which refers exclusively to those contaminated by blood products, bypasses everyone in that category.
The case was brought under the Consumer Protection Act 1987, which came into effect in March 1988. Under the terms of the act, the National Blood Authority was judged to have provided a defective product. A judgment in an English court on specific cases within that jurisdiction is not binding on a Scottish court, although any Scottish court, when faced with similar circumstances, would have regard to it.
Will the minister take an intervention?
I am pushed for time, so I will take one if I have time at the end.
The Executive is considering carefully what the implications of the judgment might be for a small number of similar Scottish cases. We are also working jointly with other health departments to consider what the wider implications of the judgment might be for the NHS. The matter, rightly, merits careful consideration. However, it is clear that the ruling deals with different circumstances, different treatments and a different time period from the cases referred to in the motion and in Nicola Sturgeon's speech, and indeed from those that Susan Deacon examined in the report to which I referred.
I recognise that many observers and certainly anyone affected would ask, "Why not just provide compensation for the relatively small number of cases affected?" or perhaps, "Why not give some financial redress to all those who have been made ill by blood transfusions and blood products, or even to all those who have been made ill by other medical treatments and procedures?" That is, in a sense, precisely the point. If that door were opened, how many people—now and in the future—would be affected? How would we judge who, when and how much to pay?
The point is that, in the past, there have been well-defined exceptions to the general principle. I refer to the example of the Macfarlane Trust, which compensates those infected with HIV. Will the minister perhaps spend the rest of his time explaining to the chamber and to people outside the chamber why it is right to compensate those infected with HIV but not those infected with hepatitis C? Most people in Scotland do not understand the distinction.
That is the only example from the NHS that Nicola Sturgeon can give, because variant CJD was not related to NHS treatment. It was exceptional, but no political party said that the principle should be changed because of that example. Nicola Sturgeon may remember that, at the time, people felt that HIV was different and that people were going to die very soon. Particular circumstances were involved.
Where negligence is proven, the long-established situation in the NHS is clear cut. Well-established arrangements for compensation and other action exist where negligence has been the cause of harm. However, what about cases in which someone is adversely affected by accident because a doctor could not have known any differently, science did not know, a patient reacted adversely to a routine procedure or, quite simply, because medicine is not a precise science and every day, by necessity, risks are taken to try to save a life or cure an ill? Would we want to create a climate in our health care system that made it risk averse? Would we want to discourage the development of new drugs and therapies because of what they might do? Would we want new treatments to be denied to people because they might involve a risk?
I hope that, even in the short time available, we can reflect on those broader issues while continuing to be sensitive to the real human experiences of those who, understandably, look to us for action.
I move amendment S1M-1865.1, to leave out from "calls" to end and insert:
"notes the Report produced by the Executive in October 2000 on Hepatitis C and Heat Treatment of Blood Products for Haemophiliacs in the mid 1980s; further notes the continuing deliberations of the Health and Community Care Committee on this issue and the recent ruling of the English High Court in the case of a number of NHS patients who have been infected with hepatitis C through blood transfusions, and encourages the Executive to examine constructively the implications of this ruling."
The Scottish Conservative and Unionist Party welcomes the extensive Health and Community Care Committee inquiry into this issue and the Executive's commitment, in its amendment, to examine constructively the implications of the English ruling. We wish to help and support all those affected by hepatitis C.
An inquiry into hepatitis C contracted from contaminated blood has been an issue for many years. The ball started rolling in the Parliament when Brian Adam lodged motion S1M-323, which stated:
"That the Parliament calls for an independent inquiry into hepatitis C and other infections of people with haemophilia contracted from contaminated blood products in Scotland."
This is a cross-party issue: the first five signatories were Hugh Henry, Margaret Jamieson, Ian Jenkins, John Swinney and me. Support has since extended to include more than 70 members. I hope that, despite the fact that the debate is in SNP time, the issue will not become party political. We are examining it thoroughly and in a professional manner.
The Minister for Health and Community Care carried out a fact-finding exercise. One would have thought that the facts would have been taken from the Haemophilia Society representatives who had contracted hepatitis C from contaminated blood. On 14 September 1999, the Minister for Health and Community Care promised to hold a meeting with the Haemophilia Society. To date she has refused to meet its representatives, either before her report was published or to discuss its findings. There is no doubt that that approach has led to anger and frustration, has contributed to the need for the current debate and has resulted in the Health and Community Care Committee's approach and inquiry. It took around six letters from the Health and Community Care Committee to the minister, asking for a response on hepatitis C, before the committee got a reply.
The Health and Community Care Committee is currently taking evidence from the Scottish National Blood Transfusion Service and the Haemophilia Society. We took evidence before Easter and we have arranged to question the minister on 23 May. The Haemophilia Society is preparing further submissions to the committee and suggests that we take further evidence. The issue is therefore live and kicking. We are in the middle of an extensive inquiry. I hope that we will not be jumped into any conclusions today, given that we have not heard the full extent of the submissions from the Haemophilia Society and from others.
Because the ministerial inquiry was conducted, according to the Haemophilia Society, "behind closed doors", we have a responsibility to ensure that people have a say and can speak about their exposure to contaminated blood products. A member of the Haemophilia Society has said that the society is pleased with the conduct, manner and extent of the Health and Community Care Committee's inquiry, and stated categorically that the Haemophilia Society did not request that the SNP raise the matter in advance of the committee's conclusions. I ask all my colleagues on the Health and Community Care Committee to be aware that today's debate was not arranged at the instigation of the Haemophilia Society.
The English judgment was based on the Consumer Protection Act 1987. We should realise that most of the people whom we have seen during our inquiry contracted hepatitis C before that act came into force. We should also be mindful of the fact that it was the judiciary, rather than the Parliament, that awarded compensation in England. Nonetheless, given that the Department of Health is not to appeal the decision, there is no doubt that the Scottish Executive should, as Mr Chisholm's amendment says,
"examine constructively the implications of this ruling."
The Health and Community Care Committee is not only examining the petition from the Haemophilia Society; we are also responding to the petition from Thomas McKissock, which relates to infection with hepatitis C through routine surgery, although Susan Deacon did not extend her inquiry to cover that group of sufferers. I agree that we are talking about a principle rather than a figure. There are 317 people in Scotland who have been infected with hepatitis C through treatment for haemophilia. Nicola Sturgeon says that she is keeping the issue wide open, and the issue is open.
The Macfarlane Trust, set up by John Major in 1990 to give financial help to people in the haemophiliac community, was established to help those who incur extra living costs arising from HIV or AIDS contracted as a result of having received contaminated blood. In 1990, we did not know as much about hepatitis C as we know today, and it is perfectly understandable that we should now re-examine the issue. I understand that the Health and Community Care Committee can recommend the setting up of a fund along the lines of the Macfarlane Trust. We cannot make that decision today—in the middle of an inquiry—but I am sure of a fair and reasonable outcome at the end of the process and I have no doubt that the committee will take account of the English court ruling.
As other members have said, contracting hepatitis C through blood transfusions or contaminated blood products is a human tragedy. It is also a complex issue to tackle in a short debate. Nevertheless, it is useful for us to have a debate, because the issue has united people across all parties in the Parliament.
As Mary Scanlon said, the issue is live and kicking, because the Health and Community Care Committee is continuing to take evidence on the matter. We heard from the minister last year and we have taken evidence from the Haemophilia Society and the Scottish National Blood Transfusion Service. We are due to hear evidence from the minister again at the end of May.
Malcolm Chisholm described this as, first and foremost, a human issue and that is indeed what the debate is about. However, it is important not to lose sight of the fact that, beyond the compensation mentioned in today's motion, we must also try to provide the best possible care and treatment, through the health service, for people who suffer from hepatitis C.
The Health and Community Care Committee inquiry has ranged somewhat more widely than compensation and the remit of the Executive's internal report, which simply considered heat treatment and information for patients. In his opening remarks, Malcolm Chisholm said that the report had been welcomed in some clinical quarters. It is worth mentioning that it has also been condemned by the Haemophilia Society, particularly the second part of the report's remit, which covered the relationship between doctors and patients and the information that patients were given about the disease. We will probably want to revisit that and do further work on it.
The committee has also considered screening, which was not within the remit of the Executive's internal report. We asked whether blood could and should have been screened for hepatitis C, which was known as non-A, non-B hepatitis until 1989. We have examined some Scottish National Blood Transfusion Service documents and have questioned representatives from the service on the range of reasons why screening might not have been done.
We are looking at the issue in a wide-ranging way, but that does not take away from the opportunity that we have today to highlight the on-going impact of the condition on sufferers and their families. Hepatitis C can cause symptoms from fatigue and stress to liver failure and, in some cases, liver cancer. Set against that, there are anxieties about the social factors. There is a small risk—but a risk nevertheless—of transmission to other family members, through sexual activity with a husband, wife or partner, or through blood-to-blood incidents. People even worry about whether they should have children. Sufferers' right to have a family is being put at risk because of concerns. The disease also has a stigma attached to it and is associated, through ignorance, with drug misuse. Sufferers may be unable to hold down a job because of their medical condition and cannot get insurance or a mortgage to provide for their families.
Those are the human issues that Malcolm Chisholm mentioned, and those are the things that we must take on board when the Parliament and the Executive deal with the issue. We must look at the situation with compassion. I welcome the Executive amendment for one word, if for nothing else. That word is "constructively". Behind that word, we must put compassion, justice and dignity for people who have suffered through no fault of their own—they have been infected simply because of a mistake; somebody's mistake, somehow. In a sense, it is even irrelevant whether it is the health service's fault. We must deal with the consequences of the events, because the people who suffer from hepatitis C have no alternative but to deal day to day with the consequences of what has happened to them, irrespective of who might be to blame.
We must consider the need for a national strategy for care and treatment which, as we have heard, is patchy at the moment. There are issues surrounding the availability of combination therapies across the country and there are many things in last October's Scottish needs assessment programme report that must be taken forward. Other countries have looked at the matter in different ways. The issue affects not only this country.
The SNP motion addresses compensation. There are still a number of unanswered questions about the number of sufferers, how one would go about determining eligibility and what the overall and continuing cost would be. A range of options could be examined, from hardship funds to on-going payments. We must ask ourselves about the realistic possibility of success for any legal challenge in the Scottish courts and whether we want to force people to seek justice simply through the courts system, rather than through the Parliament.
The Liberal Democrats want a constructive response from the minister on the case for compensation or hardship payments. The issue is less about negligence and more about justice; it is about allowing people who have suffered as a result of NHS treatment to live with dignity. I do not understand why there should be a difference between how we treat somebody who has contracted HIV/AIDS from blood treatment and how we treat somebody—perhaps even the same person—who has contracted hepatitis C.
The Health and Community Care Committee is trying to give the situation the time that it requires. We want to examine it constructively, on a cross-party basis, and in a reasonable fashion.
The Executive amendment keeps the door open and means that we are, in the wake of an English judgment under consumer protection legislation, considering the issue again. On behalf of the Liberal Democrats and as convener of the Health and Community Care Committee, I welcome that.
We have two short debates this morning, further truncated by a foot-and-mouth statement at 12.15 pm. I regret that it will therefore not be possible to call more than three of the many members who have asked to speak in this debate. We must move on to winding-up speeches by 12 minutes past 10.
We heard from Margaret Smith about the social and health aspects of how haemophiliacs are affected and about the stigma.
I will concentrate on the most positive aspect of the Executive's response: its willingness to consider a constructive examination of how we might make progress. I would like to hear, from the minister, exactly how the constructive examination will be conducted and whether it will consider the same group of patients that was considered in the English court or the wider group. Mr Chisholm mentioned a small number, but I am not sure whether he regards 317 as a small number or whether he means a different small number. I hope that we will hear about that when the minister winds up.
I do not think that the SNP was suggesting in any way—Nicola Sturgeon certainly was not—that negligence was involved. She said that she had no evidence to support that. I thought that Malcolm Chisholm's remark was unfortunate, given that we are attempting to deal with the issue in a non-party political way.
Mary Scanlon was correct to say that the SNP was not asked by any organisation to arrange today's debate. The debate was provoked by the English judgment and the minister's response to my question on 5 April, which appeared to close the door.
In the minister's winding-up speech, I would be delighted to hear an explanation—if one can be given—of the distinction between today's amendment and the answer that was given on 5 April to the question of whether a review would take place.
The background to the matter is what patients and doctors knew and the choices that were available. Perhaps informed consent was not as well developed in the 1980s as it is today. Undoubtedly a group of patients was given treatment with blood, and/or blood products, with a percentage chance of an improved outcome, but a choice was involved. Some of the patients would not have exercised that choice had they known the risk.
I do not think that having to prove negligence is a good idea; we must grapple with, and come to a positive conclusion on, the idea of no-fault compensation. The last thing that we want to do is to tie up large amounts of time and effort in the NHS on dealing with cases to prove or disprove negligence. No-fault compensation is the avenue to go down in some circumstances.
There is no clear acceptance of the distinction that is being drawn by the Executive and the Government south of the border, the result of which is that those who have been infected with hepatitis C are being treated differently from those who have been infected with HIV through transfusion or blood products. If the distinction is one of the extent to which there is disability as a consequence, that could be reflected in the level of compensation or financial assistance.
I am not too sure what the minister meant when he talked about this being about a different time period. As he said, I do not think that we are dealing with the matter only on a legal basis. We are certainly dealing with it not on a party political basis, but on a human basis. The minister advanced that argument and I do not think that a reasonable distinction can be drawn between those who were infected pre-1988 and those who were infected post-1988.
As far as I am aware, the challenge in the English courts was based on a legal technicality in consumer law, because that technicality was available. I do not think that we should pursue the matter only on legal grounds; it should be pursued on the basis of justice.
When today's debate was announced, I began by feeling that it was very unwelcome at this time; that point was discussed extensively in the Health and Community Care Committee yesterday. I continued to feel that up to the point at which Nicola Sturgeon called for a public inquiry, because—in my view—that would be an expensive waste of money, just as, in Nicola Sturgeon's view, clearly it would not be.
I feel strongly that after an inquiry has taken place, which has disclosed all the facts, there is no reason to have a further public inquiry.
Richard Simpson started by alluding to the fact that the SNP was circumventing the Health and Community Care Committee's inquiry, but he has gone on to rule out the committee deciding in favour of a public inquiry. Is not that a contradiction in terms and a bit hypocritical?
I do not think so, because I have expressed that view in the committee. What the committee's report says and whether it is unanimous are matters for consideration. I would not be talking about the issue today if the SNP had not raised the matter for debate.
As I said, up to that point in Nicola Sturgeon's speech I heard exactly what I had expected. However, since then members have all indicated that this is a serious human issue, which the chamber must address. The Executive's amendment is also very much to be welcomed.
Keith Raffan has consistently reminded the chamber that hepatitis C is a ticking time bomb: 10,000 Scots are known to be infected, but the figure is probably nearer 30,000. This is a broad issue; it is not only about those who were infected in a particular way at a particular time, or about whether there may be legal considerations. What is most important is the NHS plan, which clearly states the Executive's intention to provide support for hepatitis C sufferers during screening, diagnosis and treatment. If we are to make progress, we must flesh that out and ensure that everyone who suffers from hepatitis C is given the support that they require.
Of course, there are alternatives. Specific support for those who were infected inadvertently through blood transfusion is an interesting option. I have serious concerns about the effect of the ruling and the application of the Consumer Protection Act 1987 in that way. I have not yet read the full report, but I have read the summary. If the act is designed to ensure that best practice, producing the best product, is available quickly across Europe, no matter where the investment in that product has been effected, I think that it is a good law. However, if its effect is that any risk will have to be compensated, it will make the NHS incredibly risk averse.
Doctors—indeed members of all health professions—already practise increasingly defensive medicine. Good governance is vital, as are open and transparent results. Informed patients are vital. Brian Adam's point is well made; informed consent is dealt with in a much better way than it was previously. I am surprised that the court judgment is not being appealed against—not on the human issue, but on the legal issue—and I caution that it will have a serious effect on the NHS. Health professionals will begin to practise a degree of risk aversion that will seriously damage patients.
I ask members to think what doctors would have done in the mid-1980s—knowing that non-A, non-B existed, but not knowing exactly what it was or whether it could be, or was being, treated—had they known that substantial compensation would have be paid as a result of using a particular blood product. I suspect that they would have seriously considered not applying such life-saving products.
I will pick up from where Richard Simpson left off. I am surprised at his conservatism in this matter; although I do not ignore his arguments about the possibility of transatlantic attitudes entering the practice of medicine in this country, I think that it is part of this chamber's function to set the parameters not just for good practice, but for the morality and humanity that permeates our health service. It seems mean-spirited of the Executive to deny compensation to people who have been injured through no fault of their own. Although I understand the legal arguments that advise caution, we are not debating the legality of the situation, but protecting the people who have been harmed. The arguments against compensation do not hold water and I am glad that the Labour party whip seems to agree with me.
Will the member give way?
I might return to the member after I make the following important point.
I welcome today's debate not only for the people who have been affected by the faulty blood products that were used in their transfusions; as Keith Raffan would say more eloquently if he were here, the situation is a ticking time bomb.
I cannot explain just how deeply I feel about this matter. The right noises have been made about providing money and a scheme of treatment for sufferers, but no one understands how many people are involved. At a seminar yesterday, Dr Toby Delahook from the University of Edinburgh's infectious diseases research unit explained that 1,200 people with the virus had been picked up in Edinburgh alone. As yet there is no screening, because we have not worked out how to implement a screening programme that would not make life impossible for the people who have the virus, which incubates for 10 to 15 years. People can get on with their lives without knowing that they have the disease, so it comes as an absolute bombshell to realise that they probably have inoperable liver damage. This is not the time or place to go into details; however, it is the time to acknowledge that hepatitis C is as much a priority as HIV was. As a result, I ask the minister to tell us in his summing-up what happened to the promised helpline for hepatitis C sufferers. As someone who managed the national AIDS helpline, I know the absolutely crucial part it played in supporting sufferers and ensuring that the pool of transmission was contained. Such containment should be part of any hepatitis C strategy.
As the two ministers with responsibility for health are local Edinburgh representatives, will they urgently consider using some of the money for drug action teams to ensure that Capital C—the support and counselling service for hepatitis C sufferers in Edinburgh—does not go out of existence because of lack of funding? It is a well-grounded and well-established service that desperately needs funding and, as far as I am aware, the money that was allocated to the drug action teams to combat the drug-related effects of infection has not all been spent.
I apologise for being a bit garbled, but I had a number of specific points to raise, and I hope that the minister will be able to answer them.
Nicola Sturgeon and other members have outlined the devastating consequences for people who have contracted hepatitis C. Nicola Sturgeon and Richard Simpson commented on whether there should be a public inquiry, which is something that the Health and Community Care Committee will consider. Nicola Sturgeon also highlighted the precedents that had been set by the provisions that were made for CJD sufferers and by the establishment of the Macfarlane Trust for HIV sufferers; she also pointed out that the English court ruling is not directly transferable. Such a transfer would simply create new divisions. In that light, although the issue forms part of the debate, it is not particularly helpful.
The minister majored on the general principle that compensation should not be paid where negligence could not be proved and touched on the possible consequences of departing from that principle. Richard Simpson also highlighted the implications of what he called "defensive medicine".
Margaret Smith pointed out that, although we are talking about compensation, we need to focus on providing the best on-going treatment for sufferers of hepatitis C. As she said, one of the outstanding issues from the SNBTS report is the relationship between the doctor and patient. Furthermore, as Richard Simpson and Margo MacDonald mentioned, hepatitis C is a much wider problem and needs to become a priority issue; the sufferers are not limited to the small number of haemophiliacs who have been infected with blood products.
As this is a brief debate, we can only highlight the issues. The committee system is one of the strengths of the Scottish Parliament and the Health and Community Care Committee's in-depth examination of the matter will make a valuable contribution. Although this has been a useful, though brief, debate, we should proceed on the basis of the Health and Community Care Committee's reasoned recommendations, whenever they come.
First, I recognise that the debate on hepatitis C is on-going in the Health and Community Care Committee and I hope that the committee's inquiry goes some way towards the independent inquiry that Brian Adam's motion calls for.
However, we must be very careful not to offer an empty pot at the end of the rainbow. There is a perception—which, having spoken to Nicola Sturgeon yesterday, I understand is not necessarily being put out by the SNP—that the new ruling in England means that compensation will be paid out in Scotland, and that a public inquiry might magic up new faults somewhere else. The English judgment was made under the Consumer Protection Act 1987—which was based on a European Union directive that goes back to 1985—and basically found that consumers had the right to expect to receive goods that were not dodgy. The case was brought neither on medical grounds nor on the grounds of fault; in other words, it did not focus on whether the health service knew about the status of the product.
For information, we should briefly examine the chronology of hepatitis C. In 1975, it was first suspected that there was a disease other than hepatitis A or B. In 1988, that disease was called, effectively, non-A, non-B hepatitis, but no one quite knew its exact nature. Not until 1989 was the first test for hepatitis C—the Ortho ELISA test—produced. I have probably pronounced that wrongly; I did not do very well in Latin at school. In April 1991, the first tests were introduced in England and Wales and it was not until a year later that the test was introduced in Scotland. Any fault could have developed only during that year-long gap. That chronology highlights the fact that the health service was doing the best it could.
We should remember that the case was brought not by haemophiliacs, but by people who had been infected through transfusions or organ transplants. The SNP motion completely cuts out the latter category of sufferers.
I have dealt with the question of holding a public inquiry. I am content that the cross-party Health and Community Care Committee's inquiry goes some way towards that aim and I hope that the minister will abide by its recommendations.
The crux of the SNP's case seems to come from the moral argument presented by the Macfarlane Trust, which was set up by the Tory Government in 1990. Although Mary Scanlon mentioned the trust's remit, I will briefly repeat it. The trust was set up
"to provide financial help to people in the haemophilia community—parents, spouses, children … who incur extra costs of living arising from HIV and AIDS".
However, HIV is different from hep C; it is much more likely to be fatal when it develops into AIDS.
Will Ben Wallace give way?
No, I am sorry. I do not have time.
I do not know the reasons for John Major's Government setting up the Macfarlane Trust, but I wonder whether such a trust would be set up now. We did not know as much about HIV then as we do now. Now that we know more about hepatitis C, do we have a moral incentive to establish a similar trust? What matters to us is that those people who develop hepatitis C are given the appropriate support and treatment. That support need not be financial; it could be appropriate medical support.
What really counts—and what interests me most, although I intend no disservice to those who are already infected—is the ticking time bomb that is hepatitis C. I demand to know what the Government intends to do to deal with that future problem, which we must face today.
This has been a complex debate, dealing with matters of great importance. Margaret Smith and Richard Simpson made the point well that it is the care and treatment of people who have hepatitis C that is crucial now. We cannot change the events of the past, but we can change the future.
Various members have mentioned the many initiatives for people who have hepatitis C. Margaret Smith referred to combination therapy, which is becoming more widely available. That should continue. Reference was also made to the SNAP report, which contains many excellent recommendations and which I praised during the members' business debate on hepatitis C a few weeks ago. Margo MacDonald referred to information and prevention, and the Executive has allocated £7 million for the prevention of blood-borne viruses. Over and above that, £12 million has been granted to fund a recombinant clotting factor, which will soon become available to all haemophiliacs, although there are temporary supply difficulties.
Mary Scanlon referred to the Haemophilia Society, in which context I have two points to make. First, Susan Deacon met the Haemophilia Society before the report was written. Secondly, written evidence was taken both from individual patients and the society. However, as Mary Scanlon also reminded us, this debate does not relate only to people who have haemophilia. Cathy Jamieson would like to make that point, so I will give way to her.
Mary Scanlon referred to my constituent, Mr Thomas McKissock, who I have supported in bringing a petition to the Parliament. I have been fighting his case for almost two years.
I recognise, from the wording of the amendment, that the Executive has moved some way towards keeping the door open. However, I seek an assurance that Mr McKissock's case and cases like it—he was infected when he received a blood transfusion during routine surgery in 1989—will be considered and that some form of compensation for those people will not be ruled out in light of the ruling in the case south of the border, which I understand is not to be appealed. I recognise the complexities of Mr McKissock's case and acknowledge that it might not have been negligence that caused him to receive that infected product during a blood transfusion, but it was not his fault. He went into hospital to receive what he thought was a life-saving treatment, not one that turned out to be life threatening.
Cathy Jamieson makes an extremely important point. The debate is not just about those who have haemophilia, nor just about blood products, although that is what the SNP motion refers to. Clearly, it is about people who have received blood transfusions and—as Mary Scanlon reminded us—people who have contracted hepatitis C by other means, such as surgery. Beyond that, it is about many other medical conditions.
The crucial question that we must ask is how we are to exercise judgment concerning who deserves compensation and who does not. That question and the wider issues that have arisen today have important implications.
Malcolm Chisholm has hit the nail squarely on the head. The issue is the judgment regarding who deserves compensation and who does not. No one is suggesting that the general principle of no-fault compensation should be rejected; the question is what well-defined exceptions to that principle would be justified. We have made an exception for HIV sufferers, but people in the same circumstances who contracted hepatitis C are being denied compensation. How can the Executive justify its judgment in saying yes to HIV sufferers but no to hepatitis C sufferers? That is the nub of the issue.
Nicola Sturgeon can refer to only one decision, which was clearly exceptional—that is why she always refers to it—whereas I am talking about the general principle and the way in which distinctions will be made.
I can give Malcolm Chisholm another example.
No, I do not have time. I have only half a minute left.
Richard Simpson made the important point, which I too made in my opening speech, that we must reflect on the consequences for the NHS of awarding compensation. The result of what is being suggested may be to make the NHS incredibly risk averse; as I said, that may have adverse effects on clinical practice and patient care. What might seem the fair, reasonable and sensitive human response to the individual could—when it is analysed fully—prove deeply damaging to a far wider range of people in the long run. Members should reflect on that fact, even if they do not agree with it on first hearing it.
I am pleased that so many members have welcomed the opportunity to debate this issue. Mary Scanlon was correct to say that the Haemophilia Society did not initiate this debate; however, I assure members that the society welcomes it. In an e-mail, the society urged members to attend the debate on behalf of the 400 Scottish people with haemophilia who were infected with hepatitis C as part of their NHS treatment and expressed the hope that members would show their support. I am happy that so many members have done that. The Executive amendment signifies some movement on the issue, although members must have had difficulty picking that up from Malcolm Chisholm's opening speech, which was disappointing in its tone. I shall return to that in a couple of minutes.
The debate has provided an important opportunity for the Deputy Minister for Health and Community Care to do the right thing and provide some hope for the 300 or so Scottish people with haemophilia who suffer from hepatitis C. All that we ask today is that the Executive review its decision. It is important for the morale of those who are affected that the debate is kept open and the door is not closed on the possibility of no-fault compensation, as appeared to be the case in the Minister for Health and Community Care's written answer on 5 April to Brian Adam's parliamentary question.
Will Shona Robison give way?
I will, although Mary Scanlon did not give way to me.
When Shona Robison talks about compensation, is she talking about the 317 people in Scotland who are haemophiliacs and who contracted hepatitis C through contaminated blood, or is she including all those who were infected during routine NHS surgery and the thousands of people in Scotland who contracted hepatitis C by other means?
The terms of the SNP motion are limited to the people who have haemophilia. However, there is a case to be made for considering compensation for other people who are affected. That is one of the complexities of the issue and something that the Health and Community Care Committee will have to consider.
Will Shona Robison give way?
I shall move on and develop my argument.
Although the recent ruling in England has no direct bearing on what happens in Scotland, it places a moral obligation on us to consider no-fault compensation. The precedent has been set by the Macfarlane Trust, which was established under the Tory Government in 1988 to provide financial assistance of some £10 million to those who were infected with HIV through contaminated blood products. When that trust was established, the NHS did not disintegrate in the way that the minister implied would happen if the same support was given to people who have contracted hepatitis C. The world did not stop with the establishment of the Macfarlane Trust.
The Haemophilia Society has recommended a similar model for those with hepatitis C. We have heard no logical argument to support a situation in which someone who contracted HIV through contaminated blood products receives financial assistance, while someone who contracted hepatitis C through possibly the same contaminated blood products receives no financial assistance. That situation is patently inconsistent and unfair and the minister has provided no logical argument to support its continuation.
A precedent has been set for departing from the principle of no non-fault compensation in well-defined circumstances. I hope that the minister will not continue to indulge in scaremongering about the impact of such a limited departure from the principle. Is he suggesting that providing financial assistance to a small group of people would somehow lead to the collapse of the NHS as we know it? His words are a smokescreen and do little to develop the argument. Talking about the floodgates opening to thousands of people is scaremongering and detracts from the central issue, which concerns consistency, fairness and equity.
Financial assistance is important for people with hepatitis C, which is an infection that causes great anguish, ill health and hardship. Financial assistance would not remove hepatitis C or its devastating effects but it would improve dramatically the quality of life of those affected. This debate is about the human cost of hepatitis C. There are many valid but unanswered questions beyond what we are discussing today, which the Health and Community Care Committee will consider. The petitioners raised issues about whether Scottish patients were exposed to risks for longer than they should have been, given the extent of knowledge at the time, and about why Scottish blood products were not made safe from hepatitis C until two years after their English equivalents. All those questions must be answered.
I do not know whether those answers should be supplied by a public inquiry, but I do know that the limited internal inquiry did not answer the questions to the satisfaction of those people who have given evidence to the Health and Community Care Committee. As many members have said, that issue will continue to be raised and answers to those important questions will continue to be sought. However, those matters are not for this morning's debate.
I give a cautious welcome to the Executive's amendment. I hope that the intention behind the amendment is to give a clear signal that the Executive is prepared to reconsider the issue and to provide some hope to the more than 300 people in Scotland who suffer from haemophilia and have contracted hepatitis C. This is not a party political issue; MSPs throughout the chamber have expressed support for giving financial assistance to people who contracted hepatitis C through being treated with contaminated blood or blood products by the NHS. This is about justice and fairness. Today, by supporting the motion, we can put right the wrong that has been done.
I have a word of guidance for members, which results from the debate. In a tight debate, during which a member is unlikely to be called but has a matter of specific constituency interest to raise, a note to that effect to the Presiding Officer or the Deputy Presiding Officer will normally result in the member being squeezed in for a minute in order to get the matter recorded in the Official Report.