Hepatitis C
The first item of business is a debate on motion S1M-2565, in the name of Margaret Smith, on behalf of the Health and Community Care Committee, on its report into hepatitis C.
It is my privilege to speak to the motion in my name on behalf of the Health and Community Care Committee, on the tragic, complex and on-going situation surrounding the many hundreds of individuals who were infected with hepatitis C through blood products and blood transfusions. I thank my colleagues who have served on the committee over the past two years for their contributions and their work on the issue. I also thank our clerks and research staff as well as the petitioners who brought the problems to our attention and those who have given evidence to the committee.
Our unanimous, cross-party committee report should be regarded as only a small part in the continuing investigations that are needed to find out what happened. Nevertheless, the report is significant. The committee's deliberations have moved the debate forward, and I welcome the fact that the Executive has now responded more positively than it did initially in October 2000, when it published its internal inquiry. Over the past few days, we have seen further movement by the Executive on the issue. It has accepted most of the committee's recommendations and is keeping the door open on the question of financial assistance until the expert group on non-fault-based compensation reports to the Executive and the Parliament in six months' time. Although I am bitterly disappointed that the Executive has not accepted the case for providing immediate assistance, I recognise that progress has been made from the earlier position.
Our committee investigations into hepatitis C arose from two petitions. The first petition came from the west of Scotland group of the Haemophilia Society, calling on the Parliament to conduct an independent inquiry into the matter and to set up a compensation scheme for all those who were infected as I have described. The second petition came from Mr Thomas McKissock, calling on the Parliament to set up a compensation scheme for all those who were infected with hepatitis C through contaminated blood transfusions.
We initially awaited the Executive's inquiry into the first of those issues and, following the publication of that inquiry's report, we took representations from the Haemophilia Society and others. We heard that people were still unhappy about the fact that the inquiry had been too narrow and had not been independent. The committee then decided to take further evidence from the Haemophilia Society and the Scottish National Blood Transfusion Service as well as from the Minister for Health and Community Care. We focused on three key issues: the question of negligence; the cases for and against a public inquiry; and the cases for and against financial assistance.
First, we considered the issue of negligence. The critical question was whether, on the basis of the evidence that was available to us, the blood transfusion service or any other national health service body was at fault in allowing some individuals to become exposed to blood and blood products that were infected with hepatitis C. We accepted the fact that the hepatitis C virus was not isolated or identified, and that a blood test had not been developed to detect it, until 1989. However, we noted that those who were working in the field had, since the 1970s, been aware of a virus that attacked the liver, which was identified as non-A, non-B hepatitis. Experts were aware that the virus was passed on during blood transfusions, but no definitive test for it existed until 1989.
Secondly, we considered the question of heat treatment and whether the blood transfusion service was unjustifiably slow in making hepatitis C-safe factor VIII concentrate available in Scotland. There was an 18-month period between 1985 and 1987 during which, although English blood products were being treated at 80 deg C for 72 hours to be rendered free from hepatitis C, that was not being done in Scotland. The service argued that to duplicate the English method that experts south of the border had stumbled across was not simple. We were told that duplicating that method in a way that was safe and usable for a significant number of patients was both complex and time-consuming and involved clinical trials of the product. The blood transfusion service argued that, in having a concentrate ready to be used by April 1987, it had acted as quickly as possible and had made Scotland the first country to be self-sufficient in delivering hepatitis C-free factor VIII concentrate. On the basis of the limited knowledge that was available and the evidence that we considered, the committee could take a provisional view only. We concluded that there was no evidence of negligent delay, on which point we agreed with the earlier Executive inquiry.
One area of questioning that we pursued beyond the Executive's inquiry concerned whether the blood transfusion service should have made use of the alanine amino transferase—ALT—test as a means of screening to try to prevent infected blood from entering the system. During the 1980s, the production of factor VIII concentrate involved the pooling of thousands of individual donors' contributions; the risk of one donor's contribution contaminating a whole batch was incredibly high, especially given the reported sources of donations, some of which came from overseas.
At the time, the ALT test was the subject of heated, on-going debate. Some countries chose to make use of it while others did not. Crucially, blood transfusion service officials told us that the test did not prove the presence of non-A, non-B hepatitis but proved simply that the liver was inflamed and that, therefore, the test was unreliable. They said that it created too many false positives and would have reduced blood supplies by around 10 per cent. We were also told that ALT testing would not have prevented hepatitis C from entering the system and that it did not do so in those countries in which it was used. Nonetheless, the Haemophilia Society believed that the test ought to have been used and the blood transfusion service was reconsidering whether it should be used when a definitive test for hepatitis C was identified in 1989. On the limited evidence that is available to us, we are largely persuaded that the decision not to use the ALT test was predominantly clinical rather than financial and was not unreasonable, given the knowledge that was available at the time.
The Haemophilia Society argued that patients were not properly informed of the risks of infection that were associated with the use of factor VIII concentrate. There is a clear difference of opinion between the Executive's report and the evidence that was given to us by individuals. We received no evidence to suggest that people were deliberately misled. However, it is equally clear that some patients were not informed of the risks or given the opportunity to make an informed choice concerning the risks that were involved in choosing whether to risk a bleed or to use the blood products. That is especially distressing for many haemophiliacs who have a minor form of the disease, who may have received only one or two doses of factor VIII only to find out, years later, that they had been infected with hepatitis C as a result.
The committee was concerned by that aspect of the evidence that it received and we hope that current relations between clinicians and patients are much more open and involve a much better dialogue. We therefore recommended that the Clinical Standards Board for Scotland be asked to consider the adequacy of advice on risk that is offered by clinicians to individuals who are receiving blood transfusions or blood products. I welcome the fact that the Executive has accepted that recommendation, through the use of the board's on-going generic standard on patient involvement.
The next key issue for the committee was whether it should support the Haemophilia Society's call for a full and independent public inquiry. The society made a compelling argument that the Executive's internal inquiry was not open or transparent and involved an inherent conflict of interests, as the department was investigating one of its own branches. It also argued that the inquiry's remit was too narrow, that it did not cover decisions that were made at Government level, that it did not include contributions that had been submitted by clinicians or patients and that it did not address the impact that the disease has had on sufferers. The society also argued that the inquiry did not consider the international context or similar cases that have arisen throughout the world. For example, Eire experienced a blood scandal in recent years and compensated all its haemophiliacs who contracted HIV and hepatitis C before the inquiry that is being undertaken there.
Despite the fact that the committee believed that a case could be made for further investigation either by itself—we could ask clinicians to give us their point of view—or through an inquiry, it questioned what that would seek to achieve. We decided that the key priority was for the hundreds of individuals and their families to be given financial and other practical assistance rather than for a further two to three years to be spent in an inquiry seeking to apportion blame and prove negligence.
However, it is misleading to suggest, as the Executive did in its initial response to our report, that we therefore concluded that a further independent inquiry was not desirable. Our conclusion requires to be placed in the context of all our other conclusions and recommendations, especially our key recommendation that a mechanism for offering financial assistance to hepatitis C sufferers who were infected through treatment with blood and blood products should be put in place within 12 months. It is quite likely that, if the Executive decides to reject that recommendation totally, following the work of the expert group, the committee will want to revisit the issue of whether an inquiry is needed.
Margaret Smith has correctly outlined the position of the Health and Community Care Committee, which is that there is nothing to be gained from any further inquiry into the issue. In light of that finding, does she agree that, if the Executive kicks the issue into yet another review, sufferers will be denied justice?
I have already said that I am bitterly disappointed by the Executive's response. I acknowledge that the Executive has moved from its earlier position, but it has not recognised the moral case that we believed had been made for immediate financial assistance.
The committee also recommended that there should be some form of protocol between the Executive and the committee that would require the Executive to consult the committee on the terms and memberships of internal inquiry teams. We believe that that would help to restore public confidence in the process, something that was sadly lacking in this case and in others. The Executive has not accepted that recommendation specifically but has, following further questioning in recent weeks, intimated that it is happy for the committee to have an input into the membership and remit of the expert group, which is welcome. The conveners liaison group, the Procedures Committee, the Scottish Executive and the Parliament might want to take a view on the wider issue.
Our final recommendations were on the need for financial assistance to be made available as a matter of urgency. Our report said that we accepted the moral argument for financial assistance. We called for assistance to be given on the basis of need without prejudice. We were not prescriptive about how that was to be achieved but we said that it should be done quickly—within 12 months—and that patients' representatives should be involved in the formation of the group that considered the mechanism.
On the basis of the evidence that was available to us and the Executive's report, we could not find the NHS or other bodies negligent. However, we found that hundreds of people had been infected with this dreadful condition through no fault of their own. Some of them will die as a result, some will develop cirrhosis of the liver and some will live with increased anxiety and stress.
Fifteen or 20 years down the line, we remain concerned at aspects of clinical practice. As I said, on the basis of the evidence that was available to us and the Executive's report, we could find no evidence of negligence. However, we found reports of people not being told of risks, not being involved in discussions about risks, not being told that they had been tested for hepatitis C, not being told for more than a decade—in some cases—that they had a potentially fatal disease, not being given advice or counselling, not being told how to protect themselves and their partners through safe sex and not being told how to change their lifestyle to reduce the impact that the disease would have on their liver and their lives. We found a service that had failed not only to track and treat all those who were infected but to keep records of that, which means that we cannot now say how many people have been infected.
We believe that the sufferers have waited long enough for justice and ought to be dealt with now. A case can be made for dealing with them as a defined group. That approach would ensure that the compensation floodgates are not opened and that the NHS will not be turned into a risk-averse organisation that does not undertake clinical tests or use new equipment.
Those infected in the mid-1980s have a number of barriers in their path to justice. They have been told that the complexities of their cases mean that they have to fight a collective action in court. However, only two such people have been given legal aid in Scotland, which means that that legal route is effectively barred. Last year, the Consumer Protection Act 1987 was used successfully in test cases by hepatitis C sufferers in England. However, the act applies only to those infected after March 1998 and those who have already lodged cases. That covers only 20 to 30 people out of the estimated 300 to 500 infected people in Scotland. Under the Consumer Protection Act 1987, a person does not need to prove blame or negligence against a clinician; they need prove only that the blood or other products that were supplied were defective. On the Scottish Executive's point about clinicians being afraid to take risks in the future, the Consumer Protection Act 1987 will allow compensation claims in any case for products such as blood. That and the fact that our society grows ever more litigious mean that risk aversion will be an issue for the NHS whatever happens.
Since the Tories set up the Macfarlane Trust in 1989, there have been anomalies in the ways in which people who have contracted hepatitis C and those who contracted HIV from contaminated blood have been dealt with. There is an on-going anomalous situation in which haemophiliacs who contracted HIV and AIDS from contaminated blood in the 1980s have access to the Macfarlane Trust without any admission of negligence but other haemophiliacs do not. Another precedent has been set by the Labour Government's decision to pay out compensation in relation to CJD cases. As I said, the English courts have said that 114 people who contracted hepatitis C through treatment are eligible for compensation under the Consumer Protection Act 1987.
Morality and logic both point to the fact that the case for compensation will not go away. What remains is the knowledge that hundreds of our fellow citizens and their families face a difficult and uncertain future because of care received from the NHS that was given with the best intent but which has had disastrous consequences.
The committee heard evidence of the unfairness of the present situation. For example, we were told the story of three English haemophiliac brothers all of whom died after having been given factor VIII concentrate. Two of them died of AIDS and their families were given compensation. The other one died of hepatitis C and no compensation was paid. There is neither morality nor fairness in that.
In the face of that unfairness, the committee unanimously agreed that the moral case had been made and that financial assistance should be given based on need. We took evidence that some sufferers had difficulty securing mortgages and other life products. We are therefore pleased that the Scottish Executive has accepted our recommendation that it meet patient groups and financial institutions to investigate options. However, we were disappointed when we received the Executive's initial response that once again rejected the idea on the principle that the NHS does not pay compensation in a situation where no fault has been proven, even in the face of the anomalies that were created by the precedents of the Macfarlane Trust and the CJD compensation payments.
We welcome the fact that the Executive has agreed to our recommendation that it set up an expert group to consider the range of dispute and compensation mechanisms, including no-fault compensation. We all agree that that move is long overdue and will mirror on-going work south of the border. Although I am bitterly disappointed that the minister has failed to accept our call for immediate financial assistance for hepatitis C sufferers or a commitment to that, I welcome the fact that in a letter to me dated 7 January, in response to further questioning from the Health and Community Care Committee, the minister has said that he is
"prepared for the expert group to consider the question of retrospective application of their findings"
and that he will leave the matter open until the Executive and Parliament have had the opportunity to consider the group's report. That means that the door is still open to the sufferers and that the issue will return to the Parliament and the Health and Community Care Committee in six months' time. However, we and the people who have been infected have witnessed delay after delay and prevarication after prevarication over many years.
I hope that the Executive will set up the expert group as quickly as possible and will refer to the Health and Community Care Committee about that group's remit and membership. I further hope that, when the group makes its report, we will act on the findings as quickly as possible.
We have been told that the Scottish Parliament has the competence to set up a compensation system, although it would be desirable to have a common approach across the United Kingdom. The Health and Community Care Committee's recommendations separated two factors. We said that the moral case had been made for financial assistance to be given to certain people who have been infected with hepatitis C through blood transfusions and blood products. That was to be dealt with immediately and we set a deadline of 12 months for a mechanism for the delivery of that compensation to be found. We did not say that the issue should be considered for six or 12 months before the Executive decided whether the case had been made.
Secondly, we said that there was strong evidence to suggest that the Executive should examine the on-going situation of no-fault compensation and claims against the NHS for clinical negligence. Every member in the chamber will have been told by their constituents that some complaints to the NHS have been treated abysmally and that, on top of the stress caused by whatever happened to our constituents, they suffer distress caused by having to deal with the NHS litigation and complaints system. That situation must be examined.
As I said, the committee separated those two issues. We believe that a particular group of individuals should be helped and that a ring can be drawn around them by having regard to aspects such as the time when they were infected and the products that they received. That would ensure the delivery of the justice that they have been seeking for a long time. We also said that an expert group should be set up to consider no-fault compensation so that we do not find ourselves in such an ad hoc situation again.
As we made explicit in our report, we do not consider that anyone has anything to gain by the creation of a risk-averse NHS. We also made explicit the fact that the Consumer Protection Act 1987 provides that clinicians will not be held liable and will not be found negligent and that compensation and legal claims will be handled without recourse to blame.
If we want a common United Kingdom approach, which is probably a fairly sensible line, we could create greater complications for ourselves if we lump the individuals who are infected with hepatitis C in with the wider issue. It is not unreasonable to think that, when the Scottish expert group reports in six months' time, it will say that it wants a particular compensation system to be put in place and that it is prepared to apply the system retrospectively and award money to those who have been infected with hepatitis C.
I am sorry but, after two and a half years in this place, I am far too cynical to think that those south of the border who have consistently refused to give compensation to those sufferers will now, because we have an expert group, turn round and say that they will not only change their compensation system, but give the sufferers compensation. Even if they enter into discussions on the matter with the Parliament and the Executive, that will only mean that a decision will not be taken in six months or a year—it may even not be taken this side of the next Scottish Parliament election. That is a wasted opportunity. We continue to let down those who have been infected.
For that reason, the committee brings the report to the Parliament to demand compassion and justice for those who have contracted hepatitis C through no fault of their own in what Robert Winston has called one of the greatest treatment disasters of modern medicine. Those who contracted hepatitis C are calling for compassion and justice. I believe that adoption of the recommendations in the Health and Community Care Committee's report would deliver that to them. I commend the report to the Parliament and ask members to give it their whole-hearted and immediate support.
I move,
That the Parliament notes, and calls upon the Scottish Executive to act upon, the recommendations contained within the 17th Report 2001 of the Health and Community Care Committee, Report on Hepatitis C (SP Paper 398).
I pay tribute to the work of the Health and Community Care Committee on the subject over a long period, starting in the distant days when I was still a member of the committee. Much of that work concentrated on what happened in the 1980s. That is reflected in the report that is before us today. I welcome the report and will outline how we intend to take action on its recommendations as well as on a broader front that encompasses all those who suffer from hepatitis C.
Like, I am sure, all members who are present, I have every sympathy with those who are affected by that serious disease. I assure Parliament that we are working actively and will work even more actively to make progress on care, treatment, assistance and support.
I shall, of course, concentrate on what the Executive can do, but we must also recognise what others can and should be doing. For example, in the benefits system, over which we have no direct control, hepatitis C awareness is clearly important among medical examiners. The financial services providers also have their role to play through the provision of mortgages and insurance. That area is complex, but I am committed to working with patient groups to improve it. I intend to have exploratory talks with patients and patient groups in the coming weeks on that matter as well as on others. Following those talks, I intend to host a summit on the issue with the leaders of financial services providers.
The central role of the health department is in the care and treatment of those with hepatitis C, although there is also the enormously important work on prevention, which is not our focus today. Two recent events illustrate ways in which we are carrying forward work on care and treatment. First, health department officials this week met representatives of national voluntary organisations to discuss the possibility of setting up a national resource centre to provide advice and information to those who are affected by hepatitis C and their families. More work needs to be done on the bid that has been put in, but it has considerable potential and I am minded to look favourably on it.
Secondly, last month, the chief medical officer met directors of public health from throughout Scotland and emphasised the need for all those who are involved in delivering effective health care to continue to implement and build on the Scottish needs assessment programme report on hepatitis C. I am sure that most members know that that report is widely accepted as the template for care, treatment and prevention in the area.
The chief medical officer also arranged a presentation for senior members of the health department to hear clinicians' perspectives on hepatitis C, on the quality of service and range of treatments that are available and on how provision might be improved. Following on from that, I have asked the chief medical officer to start work to gain a clearer picture of hepatitis C prevalence to inform new recommendations from him on how we can equip the NHS to deal appropriately with the needs of those with the condition.
As I indicated in the Executive's response to the committee in December, we will undertake a listening exercise with patients with hepatitis C to identify any specific difficulties that they face on care and treatment. I have already discussed that over a number of years with the hepatitis C group in Edinburgh. I look forward to listening further to that group and others throughout Scotland.
As I mentioned at the beginning of my speech, much of the Health and Community Care Committee's report deals with what happened in the 1980s. The report concludes, albeit provisionally, that there was no negligence or fault in relation to ALT testing or the provision of safe factor VIII concentrate. It states that there was no
"general policy deliberately to mislead patients",
but refers to
"the existence of paternalistic ‘doctor knows best' approach in relations between practitioners and patients at the time."
We are determined to change that culture. That is reflected in the document on patient focus and public involvement that we issued last month, as well as in the Clinical Standards Board for Scotland generic standard on patient involvement. Once that standard has been established, there are three stages in the Clinical Standards Board's accreditation process: self-assessment against the standard; peer review by multidisciplinary teams that include professionals and patients; and publication of the findings. The Executive will meet the Clinical Standards Board in the near future to discuss how to implement that process in relation to blood transfusion and treatment with blood products. I hope that members find that an acceptable way of dealing with the Health and Community Care Committee's recommendation in that area.
I move on to another recommendation. I announced last month an expert group to examine the current system of dealing with patients who have suffered harm and to make recommendations on how the system might be changed. It has always seemed to me that any decisions about compensation must be grounded in general principles and criteria and should not be made on an ad hoc basis. The alternative is policy driven by precedent and policy that has not taken account of the more general implications and consequences of a particular course of action.
To follow the logic of the minister's argument, is he now saying that it is wrong to compensate through the Macfarlane Trust those who contracted HIV through contaminated blood? If that is not wrong, to deny the same treatment to those with hepatitis C surely must be wrong.
That is the key precedent to which I was referring. It was generally accepted at the time that, as the Government of the day and subsequent Governments admitted, that was an exception to the general principle. We are making progress with examining the fundamental principle. We are the first Government to do so openly. The principle was followed in the setting-up of the Macfarlane Trust in the sense that it was thought at the time that those with HIV would die soon.
Much of the public debate around the issue has centred on the need for fairness. On compensation, I, too, am interested primarily in achieving a fair and equitable outcome. Crucially, I want an outcome that is fair for the many as well as the few. That is why we do not believe that it is fair to consider the question of compensation to hepatitis C sufferers in isolation.
If we are to have a new compensation system here in Scotland, it must be consistent, equitable and transparent for all. That is why I announced last month that there would be an expert group to examine the system of dealing with patients who have suffered harm and to come up with recommendations on how the system might be changed.
Will the minister explain the intimation given this morning and yesterday that the door has been left open for hepatitis C sufferers, the implication being that that would include compensation? Given what the minister has just said, will he clarify whether that is the case?
That is indeed the case and I am not sure what I said to contradict it.
I intend to discuss with the committee both the remit and membership of the expert group, but I can say that the group will definitely include patient representatives. I want the group to give momentum to the debate on compensation and to report back to me within six months. I will expect the group to consider the circumstances surrounding hepatitis C infection through blood and blood products as an important part of its more general work. I also expect the group to consider whether any new system should be applied retrospectively. That is a sensible and balanced approach; it is based on keeping an open mind about what the expert group will recommend while acknowledging the complexities and implications of any course of action.
One area that has been discussed often is the possible connection between no-fault compensation and the development of a risk-averse culture in the NHS. The Health and Community Care Committee report says:
"All medical treatment carries risks, and it is crucial that practitioners should be able to take clinical decisions based on consideration of their patients' best interests. Doctors and nurses should not be required to work in a climate in which fear of the adverse consequences of treatment inhibits that treatment being carried out, even where it is objectively considered to be the best available. A risk-averse NHS is in no-one's interests."
Dr Richard Simpson, who was a member of the Health and Community Care Committee, made that point in a more striking and, I accept, more controversial way in the debate that we had on the subject in April 2001, when he said:
"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 to 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."—[Official Report, 26 April 2001; c 98.]
I accept that that is a controversial statement, but it is precisely the kind of territory that the expert group must consider. I certainly know that members of the medical profession are keen that we consider that territory.
We want the group to judge the merits of a new system in relation to three key agendas. The first of those is the promotion of innovation and creativity in the NHS. The second is efficient health service operation. The third and most important is a fair deal for all patients. I hope that that is an acceptable way of carrying forward the issue of compensation within a broad, general and thoroughly thought-through framework.
Compensation is an important issue for a particular group of people with hepatitis C, but I end by re-emphasising the wider agenda on hepatitis C, which will help that group and the vast majority of people with hepatitis C, for whom compensation is not a substantive issue. I have signalled today my determination to drive forward that broader agenda. I look forward to meeting patient groups in the near future to listen to concerns about care and treatment issues, to discuss financial services issues and to consider whatever other matters they wish to raise. Along with the work that the chief medical officer will do, we shall ensure that progress is made on a broad range of fronts for people with hepatitis C.
I am pleased that the Parliament has the opportunity to debate this issue today. I want to take the opportunity to welcome to the Parliament some of those people—many of them hepatitis C sufferers—whose determination to secure justice should be an inspiration to us all. Their cause is simple, in my view compelling, and I hoped, seemingly in vain, that today, after many years of effort and suffering, it would be successful.
The plight of patients who were infected with hepatitis C through NHS treatment with contaminated blood or blood products is one that I and many others throughout the chamber have come to feel very strongly about. Around 300 haemophiliacs and many non-haemophiliacs who are alive in Scotland today were infected with hepatitis C during the 1970s, 1980s and possibly 1990s as a direct result of treatment on the NHS with blood or blood products that were contaminated with the virus.
Hepatitis C is a devastating illness for sufferers and their families. Ken Peacock, who is one of those who was affected, said in 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 something like hepatitis C, your whole life changes."—[Official Report, Health and Community Care Committee, 23 May 2001; c 1922.]
There is a stigma attached to hepatitis C. People who have it live with the constant worry of possibly infecting those close to them, even though the risks of that are small. They find it virtually impossible to obtain life insurance or mortgages except at prohibitive rates. It is a disease that can be severe and life threatening. It can and does cause chronic fatigue, making it difficult for those affected to hold down employment. Up to 80 per cent of people who contract hepatitis C will develop chronic liver disease, with 25 per cent ending up with liver cancer.
The Health and Community Care Committee, during its inquiry, considered a number of issues and made several important recommendations. Some people disagree with the committee's view that there is no conclusive evidence of negligence on the part of the NHS. They will argue that heat treatment, which is capable of killing the hepatitis C virus in blood products, should have been introduced earlier than it was in 1987, given that it was available in England as early as 1985. They will argue that, until such time as effective heat treatment was possible, blood should have been screened to reveal the existence of the virus. Alternatively, they will argue that patients should have been better warned of the risk involved in treatment with blood products, because although hepatitis C was not isolated as a virus until 1989, it was known much earlier than that that a virus—then called non-A, non-B hepatitis—could be transmitted through blood.
I understand the strong feelings that many people have about some or all those issues, but I sincerely believe that it is now time to move on from the question of fault. That is why I want to focus on whether people infected with hepatitis C through contaminated blood should receive compensation or financial assistance regardless of whether negligence on the part of the national health service can be proved. The Health and Community Care Committee's conclusion on that was that they should. The report says:
"the Committee has become persuaded by what we classified as the ‘moral' case for providing financial assistance to those individuals infected with hepatitis C through blood transfusions."
Despite that unanimous committee recommendation, which was arrived at following 18 months of evidence taking and careful deliberation, the Scottish Executive continues to deny people whose lives have been blighted by hepatitis C through no fault of their own any form of financial assistance. The reasoning, which the Minister for Health and Community Care explained again this morning, is that it is a generally held principle that the NHS does not pay compensation for non-negligent harm. That principle may be generally held and may even be generally right, but it is a principle that has been departed from on a number of occasions.
The Consumer Protection Act 1987, which I will mention again later, is itself a departure from that principle. The Government has agreed to pay no-fault compensation for people with variant CJD, but the example with most relevance to the situation of people infected with hepatitis C is the Macfarlane Trust. The trust was set up in 1988 to compensate and provide financial assistance to haemophiliacs infected with HIV through contaminated blood products.
To receive money from the Macfarlane Trust, individuals do not have to prove that there has been negligence on the part of the NHS. They simply have to show that their illness is attributable to treatment with contaminated blood. Payments from the Macfarlane Trust are not made because the Government accepts any legal responsibility, but because in 1988 the Tory Government believed that it had a moral responsibility to compensate those who contracted a devastating disease through NHS treatment, and because the Labour Government believes that now.
Why should a distinction be made between someone whose blood treatment gave them HIV and someone whose treatment—perhaps on the same day, in the same hospital, from the same batch of blood—gave them hepatitis C? A convincing argument has never been made in support of that distinction, because there is no argument in support of it.
Government ministers frequently talk about the stigma and the public fear that was associated with HIV in the 1980s. Back then, HIV infection was a virtual death sentence. I do not want for one minute to diminish the devastating nature of HIV for those who have it and for their families, but hepatitis C is also devastating. Perhaps it is less devastating than HIV, although that is a matter for debate, especially these days. If the only difference is one of degree, surely that should be reflected in the amount of financial assistance that is awarded. It is no justification for denying any financial assistance to people with hepatitis C. However, that is precisely what the Executive is continuing to do.
Early last year there was a glimmer of hope for sufferers, when the English High Court awarded compensation under the Consumer Protection Act 1987 to a number of people who had been infected with hepatitis C through contaminated blood. That judgment contained a very important principle. The judge said that people were entitled to expect clean blood on the NHS. If they did not get that—if the blood or blood products that they received were defective and they suffered harm as a result—they had a right to be compensated without needing to prove negligence.
I argued then that, if that is right in principle south of the border, it should be right here as well. For that reason, the Executive is to be commended on its decision, in effect, to apply the terms of the English judgment in Scotland. However, that does not go nearly far enough. The English High Court reached its decision on the basis of the Consumer Protection Act 1987, which came into force in 1988. Its judgment applies only to people who were infected after 1988, but the vast majority of people were infected before that date. As well as the unjust distinction that is made between those with HIV and those with hepatitis C, we now have a new division between those infected before 1988 and those infected after that date. Quite simply, that is wrong.
It is estimated that the Executive's announcement last year will benefit only about 20 people in Scotland. The vast majority of people whose lives have been damaged or destroyed by hepatitis C continue to be denied justice. All that the minister has offered today is more prevarication and delay. We do not need another review. The Health and Community Care Committee spent 18 months examining this issue and arrived at a unanimous conclusion. Today we need the Executive to accept the moral case for compensating hepatitis C sufferers.
It is often said that justice delayed is justice denied. Never can that have been truer than in the case of people with hepatitis C. It is a sad reality that many hepatitis C sufferers will have died in the course of the inquiry by the Health and Community Care Committee. That is bad enough, but to kick this issue into yet another review when the case for financial assistance is so overwhelming, and to do so knowing that many sufferers will not be around to hear the outcome of that review, would be unforgivable. The Health and Community Care Committee concluded that there was nothing to be gained from further inquiry.
This is an issue of fairness and justice. Cathy Jamieson, Patricia Ferguson, Mike Watson, Hugh Henry, who is now the Deputy Minister for Health and Community Care, and 70 other MSPs thought that when in 1999 they signed a parliamentary motion supporting hepatitis C sufferers and demanding an inquiry. We have now had that inquiry, which reached a unanimous conclusion. The time for talking is over; it is time for Malcolm Chisholm to do what the First Minister was preaching yesterday—to listen and to act.
Back in 1995, when he was an Opposition MP in the House of Commons, Malcolm Chisholm had no difficulty supporting the case for compensation. At that time he signed a motion that called on the Tory Government to acknowledge the plight of hepatitis C sufferers
"and to consider giving similar financial assistance to those infected with HCV, who currently receive no additional help, as for those infected in the same way with HIV who have been compensated by the Government"—[Official Report, House of Commons, 15 June 1995; Vol 261, c 895.]
That could not be clearer: in 1995 Malcolm Chisholm demanded exactly the same thing that the Health and Community Care Committee is demanding today.
The only difference is that back in 1995 Malcolm Chisholm had no power to do anything about the situation. Today he has such power. The question today is whether Malcolm Chisholm has the courage of his convictions. Will he turn out to be just another spineless politician who finds it easier to turn his back on the people who need him most than to stand up for what he knows is right? Today we will find out the answer to that question.
I promise the minister one thing: this issue will not go away. Those who are campaigning for justice are determined. I, too, am determined that this wrong will be put right. However, it would be a great credit to the Parliament if it took the opportunity to do that today.
I apologise to members for my croaky voice.
The report that we are debating today is an example of Scottish Parliament committees at their best. We have worked to ensure that a thorough investigation was done, resulting in a report with cross-party support. At times, the Health and Community Care Committee acted as judge and jury, examining evidence and reaching conclusions. Today we need to address the grievance felt by sufferers who have been infected with hep C through NHS treatment and to consider the profound effect that that has had on their lives.
It is important to state that the events that we are debating today happened in the 1980s. We cannot judge those events in the light of today's medical knowledge and experience, only on the basis of what was known at the time. We must also bear in mind that all health interventions carry some degree of risk. Conservatives would not support any proposal that inhibited clinical judgment regarding treatment. In the world of medicine, treatments are being found for hitherto fatal diseases and problems. We need to support medical research and science in the advancement of knowledge to enhance patient care and human life.
The risks of receiving a blood product must be balanced against the risks of not receiving it. We can be sure that at some point in the future other diseases will emerge. The judgments that the Parliament makes then will be based not only on precedent, but on the information available today, which informs today's judgments.
I fully support the conclusion of the Health and Community Care Committee that this problem is not the result of medical negligence or error. The treatment that was provided in the 1980s was appropriate at the time. When treatment for blood and blood-based products was found, the Scottish National Blood Transfusion Service introduced the new system effectively and efficiently.
The ALT test so often mentioned was not a test for non-A, non-B virus and was highly unreliable. People who did not have the disease showed up as having it, whereas those who had the disease showed up as safe. Instead of seeking to apportion blame, we need now to move to help and support people with hepatitis C. I hope that the proposed expert group will concentrate on providing those patients with practical and financial support.
The case is unique in that the problem did not arise from a statutory offence, an act of negligence or other discernible fault, and there is no legal recourse that will allow any form of compensation. The Consumer Protection Act 1987 provides assistance of between £10,000 and £45,000, but that covers only those who were infected after 1988. Today's debate concentrates on those who were infected prior to that date. We would not be discussing the issue today if the CPA had been brought in some years earlier.
It is unclear how many hep C sufferers fall into that category. The Haemophilia Society gives an overall figure of more than 300 hep C sufferers in its patient group. Obviously, there are more in the patient group that is supported by Thomas McKissock's petition, who were infected through routine NHS surgery, yet the figure for those who are registered with the Scottish Centre for Infection and Environmental Health—SCIEH—is only 206. That figure was confirmed to me in a written answer last year. We need to know how many people have contracted hep C through bad blood and how many of those people are eligible for assistance under the CPA. I ask the minister whether only those who are registered with SCIEH will be eligible for assistance under the CPA and following the expert group's proposals.
The Conservatives would not support a measure that offers financial aid in no-fault situations, but I believe that we are facing a unique situation that warrants making a special case. When the Macfarlane Trust was set up to help those with HIV and AIDS, neither the extent of hep C contracted through blood transfusion nor the extent of the illness itself was fully known. Both the Macfarlane Trust and the CPA benefit one group and not another, but the principles of fairness and equity should not be negotiable. I ask the deputy minister to clarify, when he sums up the debate, whether the situation would withstand a challenge under the European convention on human rights, on the basis of article 14, which accords individuals the enjoyment of rights free from discrimination on any ground.
I agree with the lady from Dundee who wrote to me to say:
"my father has to cope with deteriorating health made worse by the added strain of financial worries—at 47 he deserves to live the rest of his life with dignity".
I also agree with Iain Bisset from Blairgowrie, who said that if he could prove that he was infected after March 1988, he would be entitled to assistance, yet those who were infected before 1988 are given nothing. That sense of injustice can only add to the strain and worry of those who have the condition.
Like other members of the Health and Community Care Committee, I was disappointed with the Executive's response of 11 December, which dismissed the committee's recommendations that financial and other assistance should be awarded, on the basis of need, to hep C sufferers who were infected through NHS treatment. Having said that, I believe that there has been considerable movement by the Minister for Health and Community Care, as outlined in his letter of 7 January to the convener of the Health and Community Care Committee.
I acknowledge the Department of Health's consideration of
"the merits and disadvantages of different types of no-fault compensation".
I also acknowledge the consideration of English findings in a Scottish context. I fully support the inclusion of patient representatives in the expert group and the retrospective application of the group's findings, which was mentioned by Margaret Smith. I fully support the adoption of a UK-wide position on hep C and similar issues, and I also support talks with patients and patient groups prior to meetings being held with financial institutions. I further support the inclusion of the Health and Community Care Committee in discussions on the membership and remit of the expert group. However, I have concerns about the further delay, given the problems faced by so many hep C sufferers.
Given the fact that the remit and membership of the expert group will be discussed with the committee, and given the firm recommendations made by the committee in its report, does that mean that the minister and the Executive fully agree to act on the report's recommendations? Will they act with greater urgency to implement those recommendations?
I have made my speech short because of my voice. I thank members for bearing with me.
I have received seven requests to speak and expect to call everyone. We have about an hour, so members will have rather more time than usual—within reason, of course.
In the light of your earlier announcement, Presiding Officer, I apologise for having to leave the debate early due to a commitment that I made before I knew that the debate was to be held today.
I acknowledge the many letters and e-mails that I have received on this subject. In particular, I was contacted by one of three brothers—I am sure that he contacted other members—who has the hepatitis C infection. As he described his situation, he is hepatitis C positive, but that is about the only part of his life that is positive. That is the measure of the scale of the tragedy that has affected many people in our country and explains why the Haemophilia Society, which has campaigned long and hard on this issue, has managed to maintain the momentum of its campaign over a long period of time. It has not given up, and I am certain that it will not do so until the situation has reached a satisfactory conclusion.
I will highlight three issues: the continuing need for an independent public inquiry; the role of ALT as a marker of liver function; and the question of compensation.
By March 2000, a majority of MSPs, on a cross-party basis, had signed the motion that I lodged in November 1999, which called for an independent inquiry into hepatitis C contracted due to treatment with contaminated blood or blood products. I note that a number of the members who signed that motion are now ministers, including the Deputy Minister for Health and Community Care, Mr Henry. My recollection of the circumstances in which I lodged that motion are that a number of MSPs met the Haemophilia Society towards the end of 1999, and I happened to be the member who lodged that motion. However, it might well have been Mr Henry who did so, as he was among the first to sign the motion.
We tried to raise support not on a party-political basis but on the basis of genuinely held views that something was not right and that the situation needed to be addressed. I hope that, in the spirit in which members signed that motion, they will be able to act a little more strongly than the Executive has indicated—so far—that it is prepared to act. I would have taken even more pleasure in the minister's speech had he not said "if" the expert group finds that compensation or financial assistance is appropriate—I would have been much happier had he said "when" rather than "if". However, I understand the need to consider the issue broadly, as more than one group have been infected by hepatitis C. There is a general—indeed, widespread—hepatitis C problem in our society. We must examine the issue of how we deal with medical accidents as opposed to medical negligence.
I hope that we can move the Executive that little bit further on to accept the principle of financial assistance for this group. That should be the starting point of the inquiry. Perhaps the discussions between the Health and Community Care Committee and the Executive on the membership of the expert group could also include discussions about the remit of that group. Such discussions might excise the last remaining difference on this issue between the ordinary members of the Scottish Parliament and the members of the Executive.
Despite the calls for a public inquiry, the previous Minister for Health and Community Care commissioned what was only an internal inquiry with a limited remit and a consequentially unsurprising outcome. The Administration's resistance to calls for public inquiries is disappointing. In the Chhokar case, in the case of the foot-and-mouth disease outbreak and in the case of the hepatitis C infection due to contaminated blood products, there have been calls not only from politicians but from the public for public inquiries. Such calls have been turned down and less than satisfactory alternatives have been provided. The Parliament and the Executive need to examine how we should use a public inquiry system. We cannot keep turning down calls for public inquiries. It is easy for the Executive to say that such calls are simply cheap shots from the Opposition.
Will the member take an intervention?
I will accept one in a moment.
Calls for public inquiries have come not only from Opposition MSPs but from the public. We cannot continue ignoring those calls.
I genuinely want to know how long a public inquiry process would take if we went down that route. At least the minister is offering to report back to the Parliament within six months, when we can take action.
I was coming on to deal with that. I recognise that the Health and Community Care Committee has chosen not to pursue calls for a public inquiry because it believes—I do not necessarily share this view—that we need to get to the end-point of appropriate financial assistance, because justice delayed is justice denied.
However, not all the issues have been dealt with. The Haemophilia Society has highlighted a series of issues that the internal inquiry did not tackle. Also, the Health and Community Care Committee recognised that its own view on a series of important matters could only be provisional because the committee did not have the expertise to deal with those issues. A public inquiry could and should have dealt with those issues. I was making the point of principle that public inquiries should deal with major problems when there is a need for a considered view. I accept that public inquiries will mean that delays take place, but I continue to support the legitimate aspirations of groups such as the Haemophilia Society that want to understand exactly what went wrong in a series of matters that the internal inquiry did not deal with.
On the ALT test, even though I worked in clinical biochemistry for 25 years, I still need to check what I have written down each time that I mention the alanine amino transferase test, as the letters for it have kept changing over the years. During the 1970s and 1980s, it changed from SGPT to AAT to ALC. However, I had never heard "ALT" pronounced as one word, which was the minister's interesting interpretation of it today.
The report recognised that use of the ALT test to measure liver function was not then, and is not now, a diagnostic test for the presence of hepatitis C. ALT is an enzyme that is naturally present in human serum. A rise in the level of ALT may be due to the liver's response to infections such as hepatitis C. The inquiry did not lead evidence on whether excluding donations from those with raised ALT levels would have reduced the infection rate from pooled blood, or whether a full cost-benefit analysis of the value of ALT testing would have led to a different outcome. That we have had only assertions from both sides supports the case for a public inquiry.
I shall not deal with compensation, as that has been dealt with adequately by other members.
I welcome the opportunity to speak in the debate and I hope that, in turn, Parliament will welcome the Health and Community Care Committee report on hepatitis C.
As a new member of the committee, I did not take part in the formulation of the report but, having studied its findings and recommendations, I am grateful for the opportunity to make a number of observations. Let me say right away that, although I was not party to the report's composition, I wholly support its findings. I sincerely hope that the Executive is able to find ways and means to act upon those findings in a satisfactory fashion.
There is no one in the chamber who does not sympathise with the human tragedy of those whose lives have been blighted by hepatitis C. The minister is on record as saying:
"Each and every case where someone has contracted Hepatitis C through infected blood is a tragedy for the individuals involved and their families."
No one could possibly demur. However, the Parliament must find a way to move beyond mere sympathy to practical action.
I want to concentrate on two of the major recommendations of the committee's inquiry. First, the committee recommended that
"the Executive set up a mechanism for providing financial and other appropriate practical support to all hepatitis C sufferers who have contracted the virus as a result of blood transfusions provided by the NHS in Scotland, or which involved blood or blood products produced by the SNBTS."
The report also recommended that that mechanism should be in operation
"within a period of twelve months."
The Executive must respond positively to those essential components of the committee's report. The Executive must ensure that measures are in place—and soon—that are adequate for the needs of hepatitis C sufferers. I am hopeful that such a positive response will be the result of the expert group's deliberations. According to the letter of 7 January 2002 from the Minister for Health and Community Care to the convener of the Health and Community Care Committee, that expert group is being set up to look at
"the range of dispute and compensation mechanisms"
that is open to the Executive.
We all appreciate the Executive's apprehension that awarding compensation in this case could create a precedent that would lead to what the minister called
"a climate where health professionals withhold beneficial treatment because there is a small chance of an adverse effect."
No one in the chamber believes that such a development would be positive. Nevertheless, I expect that it is not beyond the wit of the expert group to examine how to award appropriate compensation that meets the needs of sufferers, while being clearly distinguishable from the no-fault compensation that the Executive is rightly apprehensive of, thus avoiding the creation of any unhappy precedent.
I note that, in response to my committee colleague Shona Robison, the minister said earlier that the door is still left open for compensation. If the expert group is able to arrive at and sustain the sort of conclusion that I have rehearsed—that compensation does not create an unhappy precedent—I hope that the minister will not rule out such a conclusion but look on it favourably. Hepatitis C sufferers deserve no less.
Time is of the essence following Mr Chisholm's decision. The minister talks about the six months before the new expert group can report, but what will he say to this gentleman from Perth—one of the victims—who talks of the stigma of being unable to provide financially for his family? This chap was a successful businessman, but is no longer able to work. He says:
"I was forced to retire at 47 and have no arrangements in place to pay the mortgage for my family home, which I may be forced to sell."
The door of his family home may be closed long before the minister tries to keep a door ajar for the vexed question of compensation. Time is running out. The sands of life are draining away from those who are already critically ill.
The minister talked of working actively. He referred to the benefits system and dismissed it because it is not devolved. Well, that is all right then. He said that financial services providers would be approached. That is a valueless—absolutely valueless—suggestion; it could have been done two years ago. He mentioned exploratory talks with this one and that one; he said we could hold a summit on the issue; he said that the chief medical officer would at last be asked to produce statistics on the precise numbers; he said that there would be a peer review, and a clinical standards review—and so it went on, with the whole symphony that we have heard for so many years.
Fellow parliamentarians, it reminded me of George Orwell's remark about political language. He said that it was designed to make
"murder"
sound
"respectable, and to give an appearance of solidity to pure wind."
That is what we have had today. Nothing, absolutely nothing, of real benefit has been offered to the chamber. More will die in the long waiting period; some have died already.
Yesterday, the First Minister paid tribute to the work of parliamentary committees. He said that
"the work of the committees shows"
that the
"people of Scotland are being listened to".—[Official Report, 9 January 2002; c 5129.]
Two committees were involved in this saga, listening to the tragic victims of hepatitis C. That that all started shows the value of having a Public Petitions Committee. That committee listened and then the Health and Community Care Committee listened, before going through more than a year of work on the issue. The facts were well known. However, at the end of the day, the Health and Community Care Committee's main recommendation—to pay compensation—has been put in the deep-freeze. Let us not kid ourselves: the issue has been completely sidelined. It may be a year or more before we receive another piffling report from some body or other. During that time, the Health and Community Care Committee's extremely important report will be deep in storage and more people will die.
The public back the victims and the press back the victims. The Scotsman has done some excellent investigative work, as has the Daily Record. The Daily Record stated that:
"The Executive's treatment of these unfortunate victims is cold-blooded cruelty to people who are already suffering."
People were given a death sentence—an early death sentence for many—through national health service treatment that was meant to help them. I sat through the evidence that the Health and Community Care Committee heard. To be frank, I was doubtful about some of the evidence about blood transfusions. However, there is no point in apportioning blame at this late stage. We know that paying up is what will count.
We also know that, back in the 1970s and 1980s, there was an international blood scandal. Skid-row blood was brought into Britain cheaply and it was many years before we were told of the scandal of prisoners in Arkansas being paid $7 a time for donations, some of which turned out to be HIV positive. Some of the poorest countries in Africa were being bled—literally—because of the sudden demand for factor VIII. Some of that blood came into Britain. It was a Government and state responsibility then and it remains a state responsibility to compensate.
As Nicola Sturgeon said, Malcolm Chisholm was one of the 259 Westminster MPs who signed a motion calling for full compensation six years ago. I ask Malcolm to stand by his principles now. Once, he risked and then gave up a ministerial position because of his principles; he earned the respect of the people of Scotland for so doing. I ask him to retain some steel in his spine and to support the Health and Community Care Committee.
The injustice strikes at the very heart of the Parliament, fellow parliamentarians, and it strikes at the very heart of decency. We were not elected to perpetuate injustice. We were elected to right wrongs. That must be done, and it must be done immediately.
It is by and large thanks to the Parliament's petitioning process that we have a Health and Community Care Committee report on hepatitis C, that we are having a parliamentary debate on that report and that the Minister for Health and Community Care and the Executive are under pressure to implement the recommendations of that report. That should not be forgotten. If any members of the Parliament continue to doubt and question the value of the people's right to petition the Parliament, this morning's debate is yet another reason for that group of doubters to think again. I say that, of course, as the convener of the Public Petitions Committee.
The debate has been good so far. It has shown that the Parliament is united in support of the sufferers of hepatitis C and of trying to bring them justice. I remind members that we will be able to secure justice for that group of patients if we are successful in persuading the Executive to change its mind. But the only way that we will ever persuade the minister to think again is if the Parliament remains united, across the parties, on the side of the sufferers. The cause will not be helped by contributions that imply that the minister is some kind of spineless politician reneging on his principles. That kind of contribution does not help anyone; it helps least of all the hepatitis C sufferers who are trying to persuade the minister of the validity of their case. It is very important that the Parliament is reasonable and sensible in its attitude to the Executive as we try to persuade it that it has got things wrong.
Mainly because of the time constraints on the debate, I will concentrate on compensation. Like Margaret Smith and others, I welcome the minister's and the Executive's recent movement on that issue. I was pleased to hear the minister confirm that the door to compensation has been left open—at least until the report of the expert group in six month's time. That is a significant step forward from the Executive's initial response on 11 December 2001, when it ruled out compensation, saying that it was unable to support what it described as "ad hoc" compensation to this particular group of sufferers.
Does the member agree that it might be more beneficial for the expert working group to be given a clear remit to consider a compensation model that does not, as Bill Butler said, create an unhappy precedent?
The working group should have a clear remit, but I would oppose ruling out the consideration of a no-fault compensation scheme. Later in my remarks, I will address the general question of whether or not there should be a no-fault compensation scheme across the whole of the NHS. I would not want to rule that out, but the expert group should consider this particular group of sufferers and consider whether they, in particular, should be given compensation before any wider decisions on no-fault compensation are reached.
I would not like to describe the minister's concession this morning as a retreat by the Executive, but neither would I describe it as a victory for those who have campaigned for compensation for hepatitis C sufferers. I listened to the minister closely and it seemed clear that the basic Executive line has not changed. The line remains that there will be no compensation without proven negligence on the part of the national health service and I heard nothing from the minister to indicate a change to that.
The Health and Community Care Committee has, however, unanimously rejected that line. We did not accept the Executive's basic argument, which was that if it agreed to no-fault compensation in this case, that would inevitably open the floodgates to similar claims across a limitless number of other cases and other diseases, thereby bankrupting the financing of the NHS and creating a risk-averse culture in the NHS. We did not accept that argument because, as others have said, it completely ignores the current exceptions where no-fault compensation has already been awarded to other groups of patients in the national health service. There is the Macfarlane Trust for HIV sufferers and no-fault compensation has been offered to sufferers of new-variant CJD. No-fault compensation has been offered to other hepatitis C sufferers who were eligible to claim under the Consumer Protection Act 1987. The Executive argument that the Macfarlane Trust and HIV sufferers are a special case that is different to all the others has already been undermined by the actions of the Executive and its sister Government in Westminster in creating exceptions. The argument does not stand up.
The minister said that we need to avoid a risk-averse culture in the NHS. Everyone agrees with that basic principle. However, the minister did not mention the question of a blame culture in the NHS. That is something else that we must avoid. Under the current arrangements, compensation can be paid not on the basis of the patient's need—no matter how great that need might be—but solely on the basis of the culpability of various NHS staff. A patient can only get compensation if they can pin blame on particular consultants, doctors, medical staff or other NHS agencies. That is unfair and immoral. We should not have such a system in our NHS, not only because it is unfair on the sufferers, who are in a compensation lottery, but because it inhibits the reporting of mistakes by medical staff for fear of the consequences. That leads us to a situation where there is less likelihood of errors being admitted and reported inside the NHS. Therefore there is less likelihood of our learning from those errors.
I would have thought that we could avoid the problem of negligence or non-negligence by using European defective product legislation.
Such legislation operates in relation to this case, but I do not know enough about it to say whether it would act as a no-fault compensation scheme across the whole NHS. If that is the case, it is something that the Executive should take on board. Failing that, I hope that the expert group addresses the question of no-fault compensation in the NHS.
I am putting forward not the bizarre views of an extremist, but the views of the British Medical Association and other people who work in the NHS. They think that it is long overdue that some form of Government in the UK addresses the question of no-fault compensation.
The minister said that he wanted a compensation scheme for the majority, rather than for the few. That is a very new Labour phrase, if I may say so. However, that lofty aspiration is ruled out by the current system because only those who can prove negligence get compensation and that means that only the few get compensation, regardless of whether they need it. The Executive has ignored the basic moral case made by the Health and Community Care Committee on behalf of the particular group of sufferers. It is a small group of patients—no one denies that. They were infected with a serious and incurable virus through no fault of their own, but through medical treatment given to them by the NHS, which has had devastating consequences for the sufferers and their families. So far, they have been denied a full and independent inquiry into the reasons why they were infected. They have seen other groups awarded no-fault compensation and other hepatitis C sufferers who contracted the disease after them being awarded what amounts to no-fault compensation, yet their own pleas have been ignored.
Many people will tell me that I should remember that the language of socialism is priorities and that we cannot give in to every other group. Reference is always made to Nye Bevan and the need to be particular about how we spend public money. However, those people forget that when, more than half a century ago, Nye Bevan introduced the National Health Service Act 1946, he said that despite the financial and economic anxieties faced by the then Labour Government—far greater than any Labour Government faces in the present age—it was still able to do the most civilised thing in the world, which was to put the welfare of the sick above all other considerations. If the Executive and the Scottish Parliament do that, we will not go far wrong. To do that, the Executive must award compensation to a deserving and long-neglected group of sufferers.
I do not speak as a member of the committee, but as an ordinary member of the Scottish Parliament. I was drawn to this topic by the fact that I am a blood donor on a fairly irregular basis—I try to get there when I can. I am also here because of my experience with sufferers in other areas where compensation has been felt to be due.
The United Kingdom does not have a good record of treatment of citizens who have incurred injury, disease and pain as a result of actions beyond those citizens' control. I refer to matters that are generally the combined responsibility of the Ministry of Defence and the NHS. The MOD has put people in situations and the NHS has had to deal with them afterwards. My philosophical view has emerged from history as I see it. I cite the non-payment of compensation—until their numbers were much diminished—to people who were victims of maltreatment at the hands of the Japanese from 1941 to 1945. I cite the endless disputation concerning the fate of British nuclear test veterans, who were carelessly exposed to the effects of above ground nuclear tests, as to where the responsibility for their predicament lies and who will compensate them. The same applies to Porton Down veterans. It still goes on. Nothing changed after the Gulf war. Troops were exposed to completely unexpected hazards. Since that war, the United States has adopted a generous interpretation of what qualifies as a Gulf war related illness for pension and compensation purposes. The UK has tackled the problem with reluctance, evasiveness and parsimony.
The consequence of all those examples is that the victims or their relatives have to expend huge effort in their damaged lives on needless reference to the courts, lobbying, campaigning, petitioning and writing letters to obtain justice. That only adds to the stress and strain of already unhappy situations and further diminishes any hope of maintaining what might pass for a normal existence. It uses up time that is in increasingly short supply.
All those individuals are victims of history and of the United Kingdom Government's reluctance to recompense them. Hepatitis C victims are in a similar situation. Unfortunately, the tone of some of the minister's speech suggests that he is still affected by the ungenerous and negative approach to sufferers of other illnesses that has been practised by successive British Governments.
We have a new Parliament and a chance to do something different, unique and bold. The numbers that would be affected by a compensation package are relatively small, compared to the victims in my earlier examples. The plight of hepatitis C sufferers can be dealt with swiftly and honourably by the Scottish Executive, by carrying out the recommendations of the Health and Community Care Committee. Those recommendations are reasonable, practical and remove the psychological and physical burdens that are laid upon anyone who has to go to law to prove negligence.
I have not been much encouraged by what the minister has said today. I felt that there was a dragging of feet and a desire to prolong talk and negotiation—to pass more time. Time is of the essence—some of the individuals involved have less of it than some of the rest of us. There is an urgency that can be addressed only by meeting the recommendations of the committee now.
This is a most anxious subject, which has affected many hundreds of people. So far as we know, negligence has not been established and the Scottish National Blood Transfusion Service has not been criticised. That provides some reassurance to the many patients who benefit from the high standards of service and instils confidence in those who have given blood in the past, including me, Colin Campbell and many others in the Scottish civil service.
I refer the Minister for Health and Community Care to an article on the front page of The Scotsman of Monday 17 December. It says:
"The Scotsman has learned Mr Chisholm was one of 259 MPs who signed a Commons motion in 1995 asking the Tory government to pay compensation to all those infected as a result of NHS blood transfusions."
The article went on to make reference to the minister, whom we all know to be a man of impeccable character with the highest principles:
"Mr Chisholm refused to talk about his change of heart. A spokesman said he had set out the executive's position last week and had nothing to add."
I realise that the issue of liability is not wholly resolved. If liability is found, it would take the decision out of the hands of the Executive. A solicitor, Mr Cameron Fyfe, is representing four patients who are prepared to take legal action if no funds are forthcoming or if they are not enough. The most recent correspondence that he received from the Scottish health service legal department said:
"please note that no admission of liability is made either by or on behalf of either the Scottish National Blood Transfusion Service or the Scottish Ministers."
Since this matter is not yet sub judice, and since the minister holds one of the highest offices in the land and is in a position to act upon the assurances that he gave in the past, can he answer the following simple questions? It is quite clear that the working group that he has set up is an old method used by Administrations to play for time when they are not clear what they intend to do. First, can he give an assurance that the working group will act with maximum speed and urgency?
Secondly, if compensation continues to be ruled out, will he consider ex gratia payments? I draw to his attention a letter of 7 January 2002 that was sent on his behalf to the convener of the Health and Community Care Committee, which stated:
"We are not yet in a position to precisely define the remit of the group but it would need to take into consideration the range of dispute and compensation mechanisms, including no-fault compensation."
But on the second page, there are sentences that give cause for alarm:
"The establishment of a no-fault compensation system would be within the competence of the Scottish parliament. Nevertheless, we believe it desirable that there should be a common UK position and would certainly seek to achieve this if possible via the usual channels for liaison and co-operation."
With the greatest respect, I say to the Minister for Health and Community Care that under devolution the buck stops with him, and the decision is ultimately for the Parliament. John McAllion stressed the need for a clear remit for the working group in order to arrive at the necessary decisions. There may be a simple way to deal with that, and that is to consider the possibility of ex gratia payments without prejudice to liability.
Thirdly, what measure or package of measures can the minister put in place to give support, guidance and assistance to the patients concerned? Will he do that through the chief medical officer for Scotland?
Since the minister adopted a high profile on this issue when he was in Opposition, what hope can he now offer to patients whose contaminated blood transfusions took place before the protective measures of the Consumer Protection Act 1987 came into force?
Whatever the nature of the minister's response, it is essential that the necessary care and welfare be provided to those individuals who were unfortunate enough to be infected with hepatitis C, through no fault of their own, before 1987. The best way to help those patients is to ensure that the Scottish Executive provides them with the best treatment and support so that they can be as comfortable and secure as possible. Many of them are now quite elderly, and their interests should be considered sympathetically by the Parliament. We look forward to the minister giving clarification and enlightenment, not to mention guidance, to the patients concerned in what appears to be an increasingly complex situation. I welcome the commitment that he gave this morning to a solution that is consistent and equitable.
Like Colin Campbell, I am not a member of the Health and Community Care Committee, but I was a member of the Public Petitions Committee, and I concur with John McAllion's comment that if it were not for the Public Petitions Committee many members of the Scottish public would not get a fair hearing in the Parliament. I hope that the Public Petitions Committee continues to serve the public of Scotland as it has.
I am not a professional, I do not have a personal interest in this issue, and I am not the kind of person who has a knee-jerk reaction to every issue that comes before the Parliament. Judging by the comments and recommendations from the Health and Community Care Committee, I think its members do not believe in knee-jerk reactions either. However, I am a person who feels angry about injustices. The group we are talking about has been dealt an injustice by the Parliament, which I hope will be rectified. I commend the committee on its balanced and informed recommendations and report. I congratulate the committee on its recommendations, which we in the SNP whole-heartedly support and hope will come to fruition.
Many members have spoken about the events that led up to the tragedy—that is what it is for the people involved—and in particular about the lack of information that was given to patients. That has been brought to the attention not only of the Health and Community Care Committee and individual members but of hospital boards for many years. We should not look to the past; we should look to the present and the future, because that is the concern not just for people who suffer from hepatitis C but for their relatives. We should put the lack of information in the past. The issue has had a fair hearing, but we should concentrate on the matters that are at hand and on the future.
I listened carefully to the speeches of Margaret Smith and Malcolm Chisholm. They were fine words, eloquently delivered, but unfortunately—and for this I make no apology to Mr McAllion or anyone else who wishes to have consensus in this Parliament—they were just a fudge. What did we actually hear?
I am happy to stand 110 per cent behind the recommendations of the Health and Community Care Committee. The first of our two recommendations is that we want immediate recompense and financial assistance for the people who have suffered. The second concerns the wider issue of compensation and clinical negligence and the way in which people who complain about the service that they have received from the NHS are treated.
Those were two separate recommendations. In my speech I said that the Executive has put them together, and that it is delaying. I am not in favour of the way in which the Executive is proceeding. The Executive should have accepted the committee's recommendations. When the expert group finally produces its recommendations—which I do not expect to see in six months' time—there will be further delays because there will have to be negotiations with the UK Government, as James Douglas-Hamilton mentioned. The Parliament has a job to do to ensure that the remit of the working group is right, to ensure that we keep an eye on what is going on, and to keep the pressure on for six months, a year, 18 months or however long it takes.
I do not doubt Margaret Smith's sincerity and that of the committee, but I am concerned about the last part of her intervention. She said that if it takes six months, a year or two years the committee will keep an eye on it, but that is the problem—the people who are affected do not have 12 months, a year and a half or two years. We are debating the committee's recommendations, one of which is that compensation should be delivered within 12 months. However, Margaret Smith is now accepting that Malcolm Chisholm said that people might even get no compensation. That is what worries me. I do not doubt Margaret Smith's sincerity.
I have made it quite clear that I am not accepting what the Executive is saying. As convener, I stand by every single recommendation and conclusion of the report, which means that we should not proceed in the way that the Executive is suggesting. I am not in the position of the Minister for Health and Community Care to be able to do what I want to be done. All I am saying is that the committee is clear that it should be accepted from day one that financial assistance is required, that a mechanism for providing assistance should be brought in within 12 months, and that the wider issue of the second recommendation should be examined. We have welcomed the fact that the Executive is setting up an expert group to examine the wider issue because we called for that. What I do not welcome is the fact that there will be greater prevarication and that we have no guarantee today that there will be compensation or financial assistance for the individuals.
I agree with Dorothy-Grace Elder that we are elected into Parliament to right wrongs and address injustices, not to perpetuate them. I do not know how I can make myself any clearer to Sandra White.
I thank Margaret Smith. She cannot make herself any clearer to me. I said that I do not doubt her sincerity. I know that she and the other members of the committee are sincere. However, I want her to ask whoever does the summing up—Mr Chisholm or Mr Henry—to do a U-turn and accept fully the committee's recommendations.
Margaret Smith and Malcolm Chisholm gave us fine words that were eloquently put, but fine words do not deliver action. Hepatitis C sufferers need action, not in two years' time or even in 12 months' time, but as soon as possible.
I challenge Margaret Smith, as the convener of the Health and Community Care Committee, to question the convener in summing up. I do not mean the convener—that is Margaret Smith, who has been questioned.
I question myself all the time.
Yes. I bet Margaret Smith was up all last night questioning herself about what her speech was going to be. However, she should question the minister and ask him to please do a U-turn and take out the pieces about summits and everything else. People who have hepatitis C deserve better than that. I make no apologies for saying that.
I remind every member who is here today, and the people in the public gallery, that this debate is about people. I will read out an e-mail from Dave Bisset, which I believe all members received. I could not put the matter any better myself, nor could anyone else. Dave Bisset says:
"I hope you will all support the vote to compensate Hepatitis C sufferers infected before 1988 and put an end to this scandal where sufferers infected after this date together with sufferers of HIV and CJD are being compensated, because it seems to have escaped everyone's notice"—
and this is a fact—
"that people like myself and my two brothers who have been infected for over 20 years are the ones who are dying and the ones who are suffering the most. So do the decent thing don't bury your heads in the sand while we are being buried in the ground."
I put that to the minister and ask him to make a U-turn and give those people the compensation that they deserve.
We move to winding-up speeches. As we have about 20 minutes in hand, I will be relaxed about fixed timings.
Because I am summing up a debate that has covered so much, I will probably need quite a bit of waffling time to draw together my thoughts about all that has been said.
Many points have been raised in a good debate on a good report. Progress has been made on the issue through the way in which the Parliament deals with petitions and the way in which the Parliament's committees work. We can take some comfort from and some pride in that.
We should never forget the human element of the issue. Nicola Sturgeon outlined the reality of hepatitis C—what the illness is and how it affects people. Colin Campbell outlined the awfulness for people who are ill—often very ill—of having to find the time and energy to fight for justice. Dorothy-Grace Elder explained eloquently why there is no time to waste.
Margaret Smith highlighted the three areas that the report covers: negligence, public inquiries and financial assistance. There has been general agreement that we will not get hung up on negligence. Several points were made about aspects of that issue. I pick out John McAllion's speech. He pointed out the importance of fostering an owning-up culture. The concept of no blame is fine, but we want to encourage people to move towards an owning-up culture in which mistakes are recognised so that standards of treatment, protocols and ways of operating can be improved. That important point has emerged from the debate.
Another issue that came out of the inquiry into how everything was dealt with at the time is what Malcolm Chisholm described as a paternalistic approach. We should bear in mind that we are considering things that happened 20 years ago. The fact that we have moved on from that situation is extremely important. Now we give emphasis to involving patients in their treatment, giving them information and treating them as responsible adults who deserve to know and be able to make informed choices. We should commend that vital general principle, which has arisen from dealing with the present issue.
Malcolm Chisholm mentioned the national resource centre. We should welcome the fact that advice and information is being pooled and made available. Another information aspect that has emerged is record keeping and the handling of information within the NHS. It is astounding that we do not know how many people are infected, who they are and where they are. That highlights deficiencies in record keeping and information handling.
Several points have been made about whether how we deal with the group of people affected by hepatitis C will set a precedent. Bill Butler made the important point that it is not beyond the wit of the expert group to find a mechanism that treats appropriately the people affected, without setting a general precedent.
Will the member agree that the best way of reaching that outcome might be if the remit of the expert group was—from day one—to come up with a mechanism or a scheme or a model for compensation, rather than simply to reconsider the merits of compensation, which has been done already and on which the committee has reached a unanimous conclusion?
The crux of the debate is separating out how we deal with the particular group of people affected by hepatitis C from the general principles and the creation of a precedent. I have not been involved with the Health and Community Care Committee and have not heard all the evidence, but I have picked up from the debate that there might be an argument for dealing with the hepatitis C group separately, because it is a singular issue. The group could be dealt with in a particular way that need not set a general precedent. I am groping towards the fact that the Executive will have to recognise that.
The setting-up of the expert group is to be welcomed, because it is not enough to do the right thing—the right thing must be done in the right way. It will be good if the expert working group finds the right way to do the right thing. The fact that the Health and Community Care Committee will be involved in the remit and the membership of the expert group and that patient representatives will be on it—an example of treating patients as people who can make a real contribution to their treatment—augurs well for coming to the right conclusion. The expert group must report back within six months, which means that it will be possible for the committee's recommendations to be met within the 12-month time frame that it considered reasonable.
I welcome some things that Malcolm Chisholm said. Some ancillary matters to do with the benefits system and financial service providers must be tackled. Although the Parliament cannot deal with those issues, which are parallel to the debate, the Executive will take them up on behalf of the affected group. We commend that.
The extent to which the issue has been raised has highlighted the treatment of hepatitis C. As a result, more attention will be given to protocols and treatments and we will be able to ensure that best practice is spread widely and that the best levels of treatment are achieved everywhere.
Mary Scanlon had a strong point when she raised the ECHR element of the argument. Those who have been affected by hepatitis C might have had a good case under article 14 on discrimination.
The Health and Community Care Committee has done an excellent job and produced a good report. The consensus is that its recommendations are sensible and should be implemented. We are prepared to accept that establishing the expert working group will provide a way of implementing the recommendations in a more structured manner. We hope and expect that that group will reach a conclusion that progresses the committee's recommendations.
The debate has been interesting. I am not a member of the Health and Community Care Committee. I congratulate the committee on its work and I congratulate those who have helped in bringing the report to the present stage. Like Mary Scanlon, I have a slight throat infection, but mine may not be as bad as hers.
The Conservatives share the great sympathy that is felt with the victims involved. The situation is unfortunate, but as the Minister for Health and Community Care said, the issue today is not finding negligence or fault. That is part of the context of many members' speeches.
The broader issue of keeping risk aversion out of clinical decision making in health care lies behind the debate. That is an essential point that the Parliament must accept. As members know, I have been involved in the pharmaceutical side of health care for most of my working life. I have watched health care advances with great interest. As health care advances rapidly, some risk always exists. We must come to terms with that and when that risk appears, we must look back, pay attention and learn lessons. If lessons are not learned, science will not move on. More important, patient care must cope with whatever comes along. The issue is not merely compensation, but practical and financial support for the patients involved—recommendations 3 and 4 of the committee's report refer to that.
My colleague Mary Scanlon said:
"I believe that we are facing a unique situation that warrants making a special case."
We are not talking about offering financial aid in no-fault situations. She also said:
"the principles of fairness and equity should not be negotiable."
As Nora Radcliffe said, Mary Scanlon talked about a potential legal challenge on the basis of article 14 of ECHR. It would help if, in winding up, the deputy minister gave us an idea whether that has been part of the Executive team's deliberations.
This morning, the Minister for Health and Community Care sent out mixed messages. I am grateful that the door is not to be closed, but that is not the same as taking a more positive approach. From the minister's comments, I think that he wants a compensation system—if we want to call it that—in the round and in the longer term for the health care systems in Scotland. That is well and good, but that is not the purpose of the committee's report, which concerns only people who fell into an anomalous trap.
Since 1987, many people have rightly been supported. Some members said that in a few families, different support is given to different family members, although the vehicle for the problem was the same. We should narrow our considerations. I understand why the minister considers the issue for the long term and in the round, and I welcome that, but I wish that he had said something to suggest that there was a sense of urgency about how decisions will be made.
The Conservatives worry about the creation of a precedent, but that does not mean that there is no way to solve the problem sooner. The expert group is well and good and the Health and Community Care Committee should scrutinise its remit. The minister talked about other activities that one would expect, such as the CMO's involvement. The national resource centre is welcome, but it should deal with other situations too.
Bill Butler's speech was good and summed up what we are talking about. He spoke about special treatment for this cohort without establishing a precedent. I think that all members agree on that, but I am not sure of the minister's position.
My colleague Lord James Douglas-Hamilton made the interesting comment that if liability were found through the legal process, that would remove the decision from the Executive. That underlines the fact that the decision cannot be continually put off. Ministers should by all means examine matters thoroughly. We encourage the thorough and consistent handling of the matters, but a risk exists if the minister's team takes too long to deal with the situation.
Lord James also said that the working group must give an assurance on speed. In summing up, the deputy minister can probably deal with that. Lord James's suggestion of an ex gratia payment without prejudice is a solution. It is a way out that would not create a precedent. All that it would do is give sufferers who are not compensated or supported the same level of support that others with the same condition receive. It is a quirk of fate that the Consumer Protection Act 1987 was not passed earlier. Parliamentarians must deal with such issues.
Lord James was right to say that the decision is for the Parliament. If the decision happens to be the same as those that are made in other parts of the UK, that is well and good. I understand the minister's comments about the benefits system, which works on a UK basis, but Scotland has its own unique health service, and members must take responsibility for that health service, for how it is managed and for how it is developed. That must be done reasonably. We will not discuss management of the health service this morning, but the health service's focus is on delivering the best possible means of support to those who are in need in Scotland, according to Scottish resource and Scottish decision making. This is not a nationalistic plea, but a fact of life. Devolution has given this Parliament the responsibility to deal with issues. If the Parliament deals with the issues, the Executive must follow the will of Parliament. That is how democracy works.
We have discussed issues of consistency, equality and basic fairness, as well as injustice that a small number of people feel deeply. It is important that those people and their families receive support. That is the purpose of the state systems. I ask the deputy minister to make clear when the Executive hopes to make a firm decision on the issue and to answer the questions that my colleagues Lord James Douglas-Hamilton and Mary Scanlon, and other members, posed. I ask for clear answers and indications. In particular, I ask him to express a view on the provision of an ex gratia payment, if that is a way of providing support without creating a precedent.
The most important phrase that has been used during the debate is:
"justice delayed is justice denied."
After 18 months of taking detailed evidence, the Health and Community Care Committee saw no need for further investigation. As was said, more people will die as the result of yet further delay.
We must be clear about what the expert working group will do, because the minister made some alarming comments during his speech. How can we reconcile the minister's statement that no policy will be driven by precedents and that hepatitis C sufferers will not be considered in isolation with the idea that the door is being kept open? I am not sure, but I detect the use of smoke and mirrors in that statement. It may be a delaying tactic, but delay is something that hepatitis C sufferers cannot afford.
What is required is the implementation of the committee's recommendation that financial assistance should be issued within 12 months.
I did not understand to what Shona Robison referred in her intervention during my opening speech. As she has now clarified the matter, I can clarify what I said in response. It is important that any system is based on clear principles and criteria. That is what I meant by the system not being driven by precedent. We want to see the hepatitis situation in a general framework of principles and criteria.
When I come to the criteria for the expert working group, I will give the minister a suggestion that might resolve that difficulty.
First, I want to touch on the issue of precedent. As has been said, there have been a number of departures from the principle of no-fault compensation, whether that is the Consumer Protection Act 1987 or the cases of CJD or HIV infection from contaminated blood. The Macfarlane Trust is a clear model that could be followed for hepatitis C sufferers. As has been said, we have yet to hear an answer to the question why those infected with HIV from blood or blood products should be compensated while people contaminated with hepatitis C should not. The Minister for Health and Community Care has failed to answer that question.
As the Health and Community Care Committee reports, hepatitis C sufferers are a special case. There is a clear, moral case for financial assistance. As has been said, that is because we are talking about a relatively small group of around 300 people whose lives have been devastated by an incurable virus. It is not the case that legal recourse or a public inquiry is an option for them. Some people who were infected after 1988 can use the Consumer Protection Act 1987, but only if they had instructed a lawyer. As that applies to only 20 people in Scotland, that means that we have a small group of people who have no recourse left open to them.
Bill Butler said that it should be possible for the expert group to come up with a system that does not create an unhappy precedent. I am sure that that is possible. The problem is that we are in danger of putting new hurdles in the way of that outcome. The main hurdle is what the expert group will come up with. As Lord James Douglas-Hamilton outlined eloquently, given the complexities of the situation and the Executive's expressed view of a consistent model across the UK, that will take time. As we have heard, we do not have time.
In the light of that, we need to give the expert group a clear remit to come up with a compensation package for hepatitis C sufferers. That may be ex gratia payments made without prejudice to liability or some other form of compensation. Once that is done, we should look at the group's remit so that a compensation model can be found that does not create an unhappy precedent. We must separate those two issues, as the second one will take time. As I have said, we do not have time. In the first instance, the expert group must look at a compensation package.
If the minister gives that commitment today, that will go some way to dispelling the suspicion that ministers are attempting to kick the issue into the long grass. That would be unacceptable and unforgivable. I urge Malcolm Chisholm to look back to what he said in 1995 when he supported the call for compensation. If he believed his words then, surely he must believe them now. Actions speak louder than words. In this case, the Minister for Health and Community Care will be judged on his actions. I urge him to do the right thing. He should clarify the remit of the expert working group and give it, as its first task, the task of coming up with a compensation package for hepatitis C sufferers.
I join my colleague Malcolm Chisholm in paying tribute to the Health and Community Care Committee for its report. I would also like to join Brian Adam and others in the tributes to the work of those groups that represent hepatitis C sufferers. Those people have been courageous and determined. For some time, they have kept the debate at the forefront of the public and political agenda. They might not agree with one other and we might not always agree with them, but no one could doubt their fortitude and determination.
As has been said by many members this morning, people who were infected with hepatitis C through infected blood—through no fault of anyone—deserve support and assistance. That needs to be emphasised time and time again. As Malcolm Chisholm said, the Executive is working actively to make progress on a range of fronts.
I will return to the financial issue, but first I will examine some of the non-financial aspects. As has been suggested, it is important that the advice that clinicians give to patients on the risks that are associated with blood treatment is highlighted as being crucial. We agree with that.
As Malcolm Chisholm and others, including Margaret Smith, have said, we need to change the atmosphere in which doctors relate to patients and advice is given. Vast improvements have been made in that respect, but we cannot be complacent. We have agreed that the Clinical Standards Board for Scotland will examine that as part of its accreditation process on patient focus. We are in active discussion with the CSBS on how best to progress that matter. We are determined that the process should be thorough and objective.
A number of speakers have emphasised the similarities between hepatitis C sufferers and those who were infected with the HIV virus through infected blood products. While I agree that there are similarities, the situation is not the same. Questions have been posed by members including David Davidson, Shona Robison and Nicola Sturgeon about links to HIV and the Macfarlane Trust. Nicola Sturgeon asked why a distinction was made between HIV and hepatitis C. However, she answered the question when she said:
"Back then, HIV infection was a virtual death sentence."
That statement gives an indication of why the Government of the time set up the Macfarlane Trust. At that time, there was no known treatment—HIV was regarded as a death sentence. That is why a distinction was made in the case of HIV and that distinction led to the setting up of the Macfarlane Trust.
As Malcolm Chisholm indicated, it is right that the Executive and the Parliament have a clear responsibility to take account of the bigger picture and to examine the long-term implications. That would ensure that the interests of the patient population as a whole were safeguarded in a fair and equitable fashion. We have said, as have a number of members, that we cannot do something that creates a precedent.
Will the minister take an intervention?
In a minute.
That said, in the debate, we have consistently looked back to HIV and the Macfarlane Trust and used them as a precedent. There might be a determination to create a precedent today—I respect some of those views—nevertheless members should be able to foresee that, at some time in the future, people could use the arguments around hepatitis C in the same way that we are referring back to HIV.
I accept, as did the committee, the need for the expert group to look at the generality of the situation and to come up with a scheme that does not treat cases differently, but is applied uniformly. However, I fear that the Executive is missing the point of the Health and Community Care Committee report, which was that hepatitis C sufferers should be treated as an exception to the general rule to create equity between them and HIV sufferers.
Surely the expert group must first come up with a scheme for hepatitis C sufferers. It should not consider the merits of such a scheme—that has already been done—but come up with the detail of a scheme. It should do so in the full knowledge that it is not creating a precedent and before it goes on to consider the generality. That is the only way to create equity, which is the crucial principle in the case of those with hepatitis C and those with HIV. Those two groups are so closely linked that to give compensation to one and deny it to the other is simply unjust.
Malcolm Chisholm said that whatever we do we want to avoid creating precedents. However, he indicated that he and the Executive are willing to do whatever is possible to provide equity and justice. He has stated that the Executive will act on the recommendations of the Health and Community Care Committee report.
Will the minister give way?
No.
Very briefly. There is plenty of time.
The minister is not giving way.
It is not for the member to determine how much time we have in the debate—that is a matter for the Presiding Officer.
As John McAllion said, we have witnessed in this debate some of the strengths of the Parliament. Reference was made to Jack McConnell's tribute to the Parliament's committees. As John McAllion said, there is cross-party support in the work of the committees on reports such as this. I have heard no differences between the political parties this morning. With one or two exceptions, members have sought to avoid taking party-political advantage from this sensitive debate, and that is to their credit.
On a point of order, Presiding Officer. The minister referred to a remark that I made about Mr McConnell's correct declaration that the committees exist to listen to the public. However, I went on to say that the Executive in turn was not listening to the committees.
No, no, no. On you go, minister.
Will the minister take an intervention?
Yes.
I agree with the minister when he pays tribute to the work of the committees and to the cross-party nature not only of those committees, but of the report. However, by doing so, he must surely accept all the unanimous recommendations of that cross-party committee report. I cannot understand why he is setting up a situation that will complicate things even more.
We need an immediate response on the financial and practical needs of people with hepatitis C and for the situation to be dealt with, on its own merits, as timeously as possible. We are talking about something that happened up to 20 years ago. Why is the minister tying that in to present and future needs when considering the whole issue of compensation? Surely it would make more sense to deal with the individual needs of the people who are suffering from hepatitis C as quickly as possible, then to move on to future needs in a more general sense. We need to take time to get that right and, if and when it is necessary, to discuss it with our colleagues in the UK Parliament. Why are we not taking that twin-track approach?
It would be hard to sum up on all the points that Margaret Smith made in that speech. Malcolm Chisholm has indicated that progress is being made at the Executive and that he will act on the recommendations. Margaret Smith and others paid tribute to the fact that the Executive has accepted much of what the committee has said. Malcolm Chisholm has stated that we are not closing our minds to the concept of ex gratia payments. The fact that we are setting up an expert group means that hepatitis C will be treated as a specific issue, and that we will learn from that example and apply what is learned in the future. As Malcolm Chisholm has said, any system that suggests financial assistance would need to be fair and open so that everyone would know where they stood in advance of seeking such a payment.
David Davidson and Lord James Douglas-Hamilton asked about time scales. Malcolm Chisholm has indicated that there is a sense of urgency and that he wants the expert group to report back within six months.
As Margaret Smith said, we would hope that relations between patients and clinicians would be more open in future. As she and others pointed out, there is no finding of negligence. Margaret Smith and others also raised the issue of the UK-Scotland compensation scheme. As Mary Scanlon said, it would be better if we could get a UK scheme, but we will not use that as an excuse for delaying. There are matters that are within our competence and we would not be deterred from making progress because of delays in a UK scheme. The demands are for compassion and justice. As Nicola Sturgeon and others said, this is a devastating illness for sufferers and their families.
Mary Scanlon raised the question of patient representation. Malcolm Chisholm referred to that, and it will be discussed with the committee. Bill Butler and others spoke about the creation of precedents. The expert group will consider a wide range of issues. As the minister said, that will not exclude the question of compensation, which the group will seek to consider in a coherent and consistent fashion.
We have had a good debate today, which has been marked with some sensitivity because of the nature of the illness and the suffering that is involved. However, as David Davidson and others said, we need to proceed carefully so that we do not create precedents. Any action that we take must seek to address the legitimate concerns of people with hepatitis C. However, it must also seek to protect the interests of the health service and the public in the future.
Like others, I am pleased, as a member of the Health and Community Care Committee, to discuss hepatitis C today. It is a subject that has been under discussion for almost as long as the Parliament has existed. As John McAllion said, the issue was first brought to Parliament in 1999 in the form of a petition from the west of Scotland branch of the Haemophilia Society. That was followed by a petition from a non-haemophiliac patient who contracted hepatitis C following a blood transfusion. The Health and Community Care Committee first discussed the issue in December 1999 and, at that stage, acknowledged its importance. We agreed to await the outcome of the Executive's inquiry, which was instigated following the initial petition.
Following publication of the inquiry report, such was the importance that the committee attached to the matter that it discussed it at length on many occasions. Our report was finally agreed in September last year and since then we have had a dialogue with the Executive regarding our conclusions, many of which members have heard today.
It is important to remember that, as reflected in the petitions that were submitted, there are two distinct groups: those who are haemophiliacs who contracted hepatitis C through infected blood products and those who contracted the virus through blood transfusion for other therapeutic reasons. However, the committee decided that the issues that had been raised by the petitioners were similar enough to be considered together.
I will summarise the three main points that we considered. The first was whether, on the basis of the evidence that is currently in the public domain, the Scottish National Blood Transfusion Service or any other body in the health care system could be held to have been at fault in allowing some individuals to become exposed to hepatitis C-contaminated blood.
Secondly, there was the question whether there was a need for an independent inquiry into all the relevant circumstances surrounding the fact that contaminated blood had entered the system, leading to it being passed to patients.
Thirdly, we considered whether, even if negligence could be apportioned, it would be appropriate to award some form of financial or other assistance to help hepatitis C sufferers who had been infected through contaminated blood products administered by the NHS to deal with the consequences of their illness.
We also considered fault-based compensation in general. We have heard other comments about that this morning. The Executive addressed the question of fault in its initial inquiry, which effectively exonerated the Scottish National Blood Transfusion Service of negligence. However, the Health and Community Care Committee acknowledged the fact that the Haemophilia Society and other interested parties were concerned that the Executive's inquiry had been, to an extent, limited and lacking in independence and that those groups were now calling for a full public inquiry. The committee therefore decided to take evidence from the Scottish National Blood Transfusion Service and the then Minister for Health and Community Care, as well as from the Haemophilia Society itself.
We have heard about some of the points that were raised in those evidence sessions. Following our investigation, we acknowledged that a number of matters—the position of non-haemophiliacs who contracted hepatitis C and the non-use of the ALT test by the Scottish National Blood Transfusion Service—had not actually been addressed in the Executive's report. Again, we have heard more about that this morning.
Perhaps the most important omission in the Executive's report was consideration of the practical consequences of hepatitis C for sufferers and their families. There was absolutely no doubt in the minds of committee members that the effect on the lives of everyone involved is devastating. The physical problems can be profound, with serious skin and digestive problems, extreme fatigue and liver damage among the symptoms that sufferers can expect. There are also psychological and practical consequences, which are often overlooked but which can have an even more profound effect on the lives of all concerned.
Acknowledging those facts, as well as taking into account the question of just what an independent public inquiry would achieve, the committee concluded that it doubted the usefulness at this time of conducting any further inquiry if such an inquiry were to focus mainly on exploring questions of alleged fault. Such investigations tend to be lengthy processes and are normally useful only when general lessons can be learned, leading to changes in protocols or procedures.
As Nicola Sturgeon said, one of the most important reasons that led to our conclusions was that we were mindful of the need for some urgency in dealing with the whole matter, which had been in the parliamentary domain for two years. As I have said, the petition that started the ball rolling was among the first to be submitted to the Parliament, and no one on the committee felt that it was in anyone's best interests to delay moving forward any longer than necessary. The practical problems that are encountered by those who contracted hepatitis C through contaminated blood products can be immense. We felt that any further delay would be most unwelcome and everyone who was involved agreed with us.
Following the publication of our report, the Executive's initial response was disappointing, to say the least. It dismissed our view that financial and other practical support should be provided for hepatitis C sufferers, as demanded by the petitions. The Executive claimed that one of the main reasons for dismissing that suggestion was that, in its view, providing such support would create a precedent. That issue has been debated in the chamber this morning, and Margaret Smith outlined the main reasons for that claim. The committee did not share the Executive's view, but concluded that the Executive's proposal to establish an expert group to explore the difficulties that are specific to disputes involving health issues would be welcome.
The Executive addressed our concerns about the need for an overhaul of the current system of negligence and fault-based compensation by advising that a group had already been established and was working on that very issue. We look forward to the outcome of that work in due course.
We have moved on a step from that first response. The committee pursued its concerns with the Executive. Today, we have heard comments from Malcolm Chisholm that perhaps allow us to be cautiously optimistic. Some contributions from members have been somewhat negative, but the important thing at the moment is to look forward. I hope that some of the minister's comments today will allow us, with certain caveats, to be optimistic in that regard.
As Margaret Smith said, although we remain bitterly disappointed that immediate assistance will not be provided, the important thing is to look to how we can improve the current situation and how we can progress from here. In particular, the question of retrospective application of the group's findings with regard to compensation, however we wish to define it, has been acknowledged. I am pleased that, as has been said often this morning, the door is open in that regard.
It is important to remember that the committee felt strongly that what should be considered as compensation is, as our report put it:
"financial and other appropriate practical support".
We see that as a package of support to help with the day-to-day problems that affect hepatitis C sufferers. To that end, I welcome the proposed summit meeting with financial institutions, which might help to address some of the crucial practical issues that hepatitis C sufferers encounter with insurance and mortgages. I also welcome the minister's commitment that the proposed expert group will include representatives of those who are infected with the virus.
It is worth remembering the criticism of the Executive's original inquiry, which was deemed by many to be narrow and limited in scope. I therefore welcome the minister's commitment to include the Health and Community Care Committee in discussions about the membership and remit of the expert group. We felt strongly that we should contribute to those discussions. As a committee, we had debated long and hard and had taken evidence from various sources. We felt that we were in a position to be involved in how that expert group was set up and what its remit and composition would be.
The way forward is surely through meaningful dialogue involving those who are affected by hepatitis C. I emphasise that our welcomes are cautious. Time really is of the essence. The Health and Community Care Committee was unanimous in its view that practical assistance should be delivered within 12 months of its report. The minister has stated that the expert group will be expected to report within six months. I hope that "within six months" does not necessarily mean six months. I hope that the minister will take that on board. That leaves only a short time for further discussion; I hope that the Executive will be mindful of that. The committee will monitor closely the progress of the group and the time scale. We look forward to further updates in due course.
I thank all those who have been involved in the matter over the past two years. I know that we will all look forward to the next stage. As the minister said in his speech, we are in the position that we are in today because of devolution, because we have a Scottish Parliament and because we have a Public Petitions Committee. For those whose lives are affected by hepatitis C, life can be difficult. I was glad to hear the minister praising the courage that is demonstrated by hepatitis C sufferers. I hope that he will look compassionately on the matter and will understand the need for a speedy conclusion.
That concludes the debate on hepatitis C. We now move on, a couple of minutes ahead of schedule, to the next item of business.