Health and Community Care Committee, 29 Jan 2003

Meeting date: Wednesday, January 29, 2003

Official Report 295KB pdf

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Hepatitis C

Agenda item 2 is on the issue of hepatitis C. We are joined by the Minister for Health and Community Care and his team of advisers.

For a couple of years, the committee has been involved in considering the cases of people who have been infected with hepatitis C as a result of NHS treatment. We asked the minister to return to speak to us about the progress that he has been able to make as a result of the findings of the expert group and about his continuing discussions with Westminster colleagues about possible ex gratia payments to address the concerns of the committee, the expert group and the Parliament. I ask him to bring us up to speed on the present situation.

There are two sides to the matter. First, we have been working on what we would like to propose in detail, the principles of which I outlined before Christmas. The second side is our discussions with the Westminster Government.

Let me start with the first. I have given much more thought to the details. On 11 December, I said that I was keen to give assistance—particularly financial assistance—to people who were suffering harm through having contracted hepatitis C from blood products. I still adhere to that principle, although I have to say that it was not picked up by everyone in the reporting of what I said.

I have looked at the details of the proposals from the expert group on financial and other assistance for NHS injury, and some difficulties have emerged as a result of my reflections. The main group about which we are all concerned is the group that is made up of people who have contracted hepatitis C from blood products and who are still alive. It would be reasonable to focus assistance on those people who are still with us and who contracted the hepatitis C virus in that way. That is the group that I would like to help.

The problem with the expert group's report is that it divides the people concerned into three groups, and it has proved quite difficult for me to determine exactly when chronic hepatitis begins. The committee will know that the expert group has proposed that there should be an initial payment of £10,000, another payment at the chronic hepatitis stage and a further payment when the person affected develops cirrhosis and reaches a more advanced stage of illness. The medical advice that I have received indicates that a liver biopsy would be necessary for diagnosis of the chronic stage, which would be undesirable at a relatively early stage of the illness.

My thinking is that I would like to give a payment to everyone who contracted hepatitis C from blood products and who is still alive. I propose the payment of a sum of £20,000 to everyone who is in that position. I still intend to follow the expert group's thinking about a further payment at the cirrhosis, or more advanced, stage of the illness. That is consistent with what I said before Christmas. I propose that £25,000 should be paid at the advanced stage.

Did you say £25,000?

Yes. I hope that that covers all the people about whom the committee is concerned.

In concentrating on the people who are still alive, I differ from the expert group. That is consistent with what I said about targeting support on those who are suffering now as a result of having contracted the virus in the way in question. Excluding people who are dead and reducing the amounts in one way—although I have increased the initial payment for everyone who has the virus from the figure that was proposed by the expert group—will result in immediate payments that are less than those that were proposed by the expert group. In relation to the health budget, I said on 11 December that I did not want to go into double figures in year 1 and what I have proposed would be manageable within that principle. I think the public will understand that principle, given all the other pressures and demands on the health budget. That is an outline of the development of my thinking on what I hope to be able to offer.

Members will know that I flagged up two issues with reference to Westminster on 11 December, although in their questioning they reacted only to the social security issue. However, I made it clear that there were two Westminster issues. People are familiar with the social security issue in the context of free personal care; however, additional payments have consequences for social security payments, which must be avoided. I was not questioned about the powers of the Scottish Parliament as described in the Scotland Act 1998, which was the other issue that I flagged up. Westminster's thinking on that issue remains unresolved.

I want to find a resolution to both those issues, but members will understand that such matters are not under my control. We have had on-going engagement at official and ministerial level with the Westminster Government but it has not come to a final view on the vires issue. Members will understand that it is impossible to go ahead until that has been resolved.

Progress on our discussions with Westminster is therefore disappointing. Members may want to ask further questions about that. My last word is that it should be self-evident that the issue is under the control of the Government in London, and not something for which I can determine the time scale, although I have indicated that I would like it to be quickly resolved.

Thank you, minister. We are happy to hear many of your comments, particularly those about payments being made to everybody. In our report, the committee took the same view as that taken by the expert group. The issue has commanded a great deal of support across the Parliament in the past year or so, so your comments are welcome.

We will now have questions. First, I should like some clarification. You propose an initial payment of £20,000 to everybody, but is the further payment only for those who develop cirrhosis, or is it also for those who have serious consequences that could include cirrhosis?

The second payment that I outlined is the same as the expert group's third payment. The difficulty that I have with the expert group's proposal is the distinction between the first group and the second group. I have thought a lot about how I could carry out into practical effect my principle in relation to those suffering harm. It is difficult to distinguish, in the way that the expert group does, between the first and second group. On the second group, the expert group talks about chronic hepatitis, but I am advised that that can be established only by a liver biopsy. I do not think that it is acceptable to require people who are not at an advanced stage of illness to undergo a biopsy unless it is necessary for other reasons. The simple way around that problem is to introduce a virus test. If people have the virus, they should get the first payment. I am therefore collapsing the expert group's proposed first and second groups—my further proposed payment is identical to its third payment.

I repeat that I am focusing on people who are still alive. The test that I propose is clear and would cover people who are alive and who have the virus as a result of the use of blood products.

So those people would receive an additional payment. They would receive the £20,000, then a further £25,000.

Yes.

Do you have a figure for how much that package will cost?

Some of the expert group's calculations were extrapolated from UK figures. My immediate focus is the 568 people whom we know about because they are registered with the SCIEH—the Scottish Centre for Infection and Environmental Health. The estimated cost of what I propose for those 568 people is just under £15 million. Further payments may arise in future if other people who have contracted hepatitis C from blood products emerge. However, the people on whom we are focusing most tangibly and whom we all meet from time to time are the group of 568 who have already registered. The figure of £15 million is higher than the one that I flagged up to the committee previously, but payments will be made over two years in practice, although most will be processed in one year.

We turn now to the nub of the problem. A parliamentary committee report on this issue has been agreed unanimously. The majority of members of the Scottish Parliament and the Scottish Executive want something to happen, as you have indicated this morning. The nub of the problem appears to be at Westminster.

I welcome the minister's comments, although his announcement today does not constitute the full implementation of the expert group's recommendations. The people who are affected will want to reflect on that. However, this is a significant breakthrough, especially on the principle that payments should be made to everyone with hepatitis C. I repeat my warm welcome for his announcement and congratulate him on having moved forward on this issue.

As the convener said, everything hinges on whether the issues that relate to reserved powers can be resolved. I intended to ask you about the Scotland Act 1998 angle, but you have already indicated that that remains an outstanding issue.

When you appeared before the committee on 11 December, you said:

"If we do not start making progress by the turn of the year, we will have to consider the different avenues that are open."—[Official Report, Health and Community Care Committee, 11 December 2002; c 3565.]

What different avenues are being explored? If it is the will not just of the Parliament but of the Scottish Executive that payments should be made to hepatitis C sufferers, it would not be acceptable for Westminster intransigence to prevent that from happening.

There are two issues that need to be addressed. Nicola Sturgeon's view of the Scotland Act 1998 is different from the view that some others take—

I am not arguing about the legalities of the situation.

People will take different views, but the existing law must be applied and any issues of controversy will have to be resolved. Nicola Sturgeon might like us not be constrained by the Scotland Act 1998, but we must abide by that act. We cannot go ahead until the reserved issues have been resolved.

When I made the comment that Nicola Sturgeon cited, I was expressing my desire to make fast progress on the issue. However, it was a general comment; I did not know what the options were. Since 11 December, I have examined the matter in more detail and have concluded that, until the reserved issues have been resolved, we cannot move forward. The Parliament cannot act if its powers are being challenged. We have not yet reached that situation, as Westminster has not taken a definite view. However, any act of the Parliament that is perceived to be outwith the scope of the Scotland Act 1998 is open to challenge, as the act makes clear.

When I made that comment on 11 December, I was also thinking of the mechanisms that are set out in schedule 6 to the Scotland Act 1998. I am sure that all members are familiar with that schedule and with the role of the Judicial Committee of the Privy Council. The provisions of the 1998 act cannot be circumvented. We cannot simply say that we will forget about Westminster, as the Parliament was set up under the arrangements that I have described.

I appreciate what the minister is saying. Obviously, we have different views on whether the Parliament should be constrained by the Scotland Act 1998. We need to obtain Westminster's agreement to exempt the payments from clawback. As I understand the situation, it is not a matter of Westminster first saying, "Yes, you can do it," or, "No, you can't." Rather, it is a straight interpretation of the Scotland Act 1998. What route are you going down to get that definitive interpretation? Are you exploring different ways of making those payments that might bring them within the ambit of the Scotland Act 1998? If you think that simply setting up a discretionary trust is outwith that ambit, are other ways of reaching the conclusion that you have outlined actively being explored?

We are proposing a scheme that we believe is consistent with our powers. The reality is that people make different interpretations of the Scotland Act 1998, and we might as well be clear about the fact that the schedule 5 social security reservation, which deals with payments for sickness and disability among other things, is very much the point in question. People have expressed different views on that, but we came to the view that we can do what our scheme proposes. We would not want in any way to do something that we thought was beyond our powers, but people can interpret the social security reservation in different ways. That is the general issue in relation to the powers of the Parliament.

The other issue overlaps, as Nicola Sturgeon indicated. However, once it has been agreed in principle that there is not a vires problem, we must ensure that there is no knock-on effect on social security benefits. I have recently written again to the Secretary of State for Work and Pensions about that matter. Until the first issue is solved, we cannot definitively solve the second issue. Until the Westminster Government is absolutely clear about the vires issue, it is difficult to resolve the other ones, but that does not mean that we are not discussing them. Members will understand that the issue in relation to the Scotland Act 1998 is the prior issue for what we are proposing.

You mentioned the role of the Privy Council, and I am racking my brains to remember the correct procedure for interpreting the Scotland Act 1998. Are you saying that the Scottish Executive will take the matter as far as it can in trying to establish that what you want to do is in fact within the powers under the Scotland Act 1998?

It is the Westminster Government that would challenge if something were outwith the ambit of the Parliament. There is more than that in the Scotland Act 1998, but that is the fundamental challenge. There are other challenges in schedule 6, but that is the basic route that would be followed if the Scottish Parliament were doing something outwith its powers.

You have spoken about the difficulties surrounding the competences of the Scottish Parliament. Given the fact that the Executive and the expert group have both indicated that they believe that there is a moral obligation, rather than a legal one, might not you be in a position to avoid social security clawback? That is certainly an area that the committee homed in on.

That is precisely what we are arguing and will argue. The point that I was making is that, until the other issue is resolved, that is not something that can be finally decided. Logically, the other issue must be resolved first, but Margaret Jamieson makes a powerful point and I agree with it. Members all know this, but I might as well say that that is the view that we take. That is why, like the expert group and the committee, we are talking about ex gratia payments. Such payments are not a legal obligation, and we certainly have no intention—any more than the Health and Community Care Committee does—that they should set a precedent. The wider issues that the matter raises are being dealt with by the expert group in its final report, which I have not yet received. I certainly echo the view that Margaret Jamieson has expressed.

We have asked for legal opinion and have been told that that option may well free the Scottish Executive from the social security reservation in schedule 5 to the Scotland Act 1998, as the matter would then be deemed to be within the gift of the national health service. Are you confident that the solicitors who are advising you have explored every avenue other than the ones that have been discussed in relation to social security and so on?

We have come to a view and we are confident about the view that we have expressed. I understand the point that is being made and I presume that that issue may have to be considered in taking a view. People will still come to a view, whether the matter is caught by the social security reservation or not. What Margaret Jamieson has described is relevant to the discussion, but it does not mean that a view should not be taken. That is the point at question.

We could pass on the legal advice that we have received, in the hope that it will assist you in your deliberations with colleagues at Westminster.

You have emphasised the fact that payment would be applicable only to those who are still alive. What is the cut-off date for that, given the timing of the committee's report and the interim report of the expert group? You have said that you are still awaiting the final report. What will be the operative date?

I have not come with that level of detail. The important thing is that I have carried forward the principles that I described previously to the committee. A date will have to be set, but the principle is that help should be given to those who are suffering. The corollary to that is the fact that we are talking about people who are still alive. I do not envisage a great deal of retrospection, as the principle of helping those who are still alive self-evidently means that the date will have to be set at around the time that the help kicks in.

That is the general principle that I would follow, and it is what the public would expect, in so far as they support the principle. I would sympathise with that. We want to help those who are suffering as a result of having contracted the virus in this way. In a way, I am simplifying what the expert group proposed. If somebody is alive now and has the virus because of NHS treatment, they will get the initial payment.

Nicola Sturgeon suggested that I had narrowed down what the expert group proposed; however, in some ways, I have expanded what the group proposed. I am saying that anybody who contracted the hepatitis C virus in that way will get £20,000, which is double what the expert group proposed for the group of people who have pre-chronic hepatitis C. I hope that I have simplified the recommendation and presented a proposal that everybody readily understands. It focuses on those who are alive who contracted the virus in that way. There are two levels of payment, and the proposal is easy to implement. We do not have grey areas between those who have chronic hepatitis and those who do not, as would have emerged from the expert group's proposals. We do not want to get involved in carrying out liver biopsies on hundreds of people.

You have identified two specific groups. I agree that people should not undergo liver biopsies for no other reason than to satisfy the requirements of a piece of paper. What process will be used to identify people who have moved from having the hep C virus to having a condition that will trigger further funding?

My answer is subject to medical advice. The expert group made a proposal. I think that the proposed cut-off point will be much easier to implement than the other one, because people are more ill by that stage. I am told that they will have had many tests and will have scarring on the liver and various other attributes that have been described to me. I am assured that it will be much easier to identify that third category than to be clear about the second category.

Like other committee members, I very much welcome the announcement that £20,000, rather than £10,000, will be paid to all those who contracted hepatitis C through blood transfusion. My concern is that their gain will be others' loss. For example, those who were described as suffering from chronic hepatitis C will receive £20,000 instead of the previously recommended £40,000. Those who were described as suffering from an advanced stage of hepatitis C will receive £25,000 instead of £40,000 plus on-going support. Relatives of those who paid the ultimate price and died will receive nothing under the new scheme. There are big losers under the new proposals.

Two questions arise from that. The expert group included a medical director, the chair of the Scottish joint consultants committee and directors of nursing, all of whom have vast medical experience and who saw no problem in describing people as suffering from chronic hepatitis C and therefore qualifying for payments of £40,000. Why should we believe the minister's advisers instead of that medical opinion?

The expert group's recommendations would have cost between £62 million and £89 million. Your recommendations will cost £15 million. The concern is that what you are offering is what the Scottish Cabinet has allowed you to spend on the problem and not what people deserve to be paid given the moral argument and the suffering that people have undergone.

As I made clear in December, the reality is that I must be mindful of all the demands on the health budget. I was and am happy to be open about the fact that I would have considerable difficulties with taking more than £10 million in the first year. That is a lot of money, given the pressures and demands that everybody in the chamber knows are on the health service. I am not oblivious to financial considerations. I have no problem with saying that.

Equally, a system could be established to make the distinction between categories 1 and 2 that the expert group recommended. All that I am saying is that a continuum would be involved and the system would be controversial. I am not saying that such a system could not be used, but it would be difficult to be objective about it. I am attracted by a simple scheme that is easy to implement. Everybody will know how it is applied and who is eligible. That is my objective.

Of course, John McAllion and others can say that less money is involved than the expert group proposed. Obviously, I agree that some people will have less money than the expert group proposed. However, as we have discussed, the claims of that group of people must be balanced with all the other claims on the health budget. We accept that the scheme provides not compensation, but ex gratia payments, which is another relevant consideration. The amount of money is substantial. In general conversations, many people have welcomed and understood the proposal.

Just about every committee member wants to ask a question and we have to talk about measles, mumps and rubella vaccinations, too. I am sympathetic to taking as many questions as possible, but I ask people to keep their questions and answers short, so that we get through as many members as possible.

I have a brief question. We are talking about the 568 people who were infected before the Consumer Protection Act 1987 was implemented. Our main obstacle is the social security clawback. How was that overcome for all those who received substantial payments under the 1987 act on the basis of the defective product? Surely that is a precedent.

Obviously, action can be taken; for example, members will be aware that legislation was passed at Westminster in connection with the MacFarlane Trust. We hope to make progress on the matter. I suppose that the difference is that the proposal relates only to Scotland, whereas earlier matters involved UK legislation. The suggestion is not impossible in principle; it is a matter only of working out the detail.

I am not talking about the MacFarlane Trust, but about the Consumer Protection Act 1987, which made ex gratia payments to people who had been infected by bad blood on the ground that the product was defective. Has not the obstacle of social security clawback been overcome in some form or other? We are concerned only with patients who were infected before 1987. If such an obstacle was overcome in the payments that were made under the Consumer Protection Act 1987, can it not be overcome in this case?

We are working towards doing so. I might have confused two separate issues. In the case of the MacFarlane Trust, specific changes had to be made to social security regulations. As far as the Consumer Protection Act 1987 is concerned, the issue is legal liability, which has no implications for social security payments. The point is that this particular case is in the same category as the MacFarlane Trust case, because there is no legal liability.

We are in a slightly strange situation in that you have outlined what you want to do, but say that you are not able to do it without somebody else's say-so. As a result, I seek clarification on two points, the first of which is the time scale. That is particularly important, given your comments about focusing on the people who are alive. People might die between now and the commencement of the scheme. Within what kind of time scale do you want the matter to be resolved, and what pressure can you bring to bear to ensure that the Westminster Government meets it?

My second point is slightly hypothetical. If Westminster comes back to you and says that the matter is reserved under the Scotland Act 1998 and so cannot be addressed or does not agree to make exemptions on clawback, will that be the end of the matter as far as you are concerned? Would the Scottish Executive seek to challenge such a decision or would it find different ways of doing what it wants to do?

As I made clear the last time I discussed the issue with the committee, I want to make progress in this Parliament. We will also make that absolutely clear to the Westminster Government; however, it has to go through its own processes in relation to the matter.

On the second point, I am not sure how helpful it is to raise hypothetical situations. The fact is that there will be a definitive legal view and, as I have pointed out, the Scotland Act 1988 charges a particular body with reaching such a view. That body is the final court of law in this respect, which means that, at a certain point, there will be no recourse. As a result, we cannot really argue over the matter; that is just the way the Scotland Act 1998 is. Obviously, other people will express different views about other, more general matters, but the position is quite clear: we have to act in accordance with the Scotland Act 1998, and there are procedures for resolving any disagreements or differences.

Although you have moved forward on this issue, the fact remains that there have been six-figure pay-outs in the Irish Republic.

I recently received a letter from the Haemophilia Society, which I will pass over for your consideration. The society is very concerned that you might have based some of your calculations on inaccurate figures for patient numbers. The Executive is obviously concerned about the total number of people who are involved. The society has investigated the matter and claims that the figures have been transposed from English statistics and that the Scottish figures are proportionately much lower. I ask you to study the matter, because if the figures that you have been working with are exaggerated, to some extent that must have influenced your thinking on whom you will pay out to.

We are dealing with an issue of morality. The patients have been fighting for years and, in some cases, decades. You say that there is a difference between those who are diagnosed with hepatitis C and those who are diagnosed with it but who do not have chronic hepatitis C—they have to move on to that stage to get a pay-out. Do you accept that all those who have been diagnosed with hepatitis C have had their lives harmed, for instance, by having jobs blocked or failing to get a mortgage? Will you please reconsider what is to be done about those people? Do you not feel a moral obligation towards them, too?

There were lots of points there.

That is what we get when I ask for short questions.

There was an issue of fault in Ireland. Some people say that that is also the case here, but the general view is that there was no fault here. Our situation is different from the situation in Ireland, where it is accepted that there was fault.

In the interests of clarity and quick progress, I have tried to home in on the people who are registered with the SCIEH. I accept that the larger figure on which the expert group based its calculations is an extrapolation from UK figures. What the Haemophilia Society says may be true—I do not know—but that does not influence in any way the decision that I have made to home in on those 568 people. I accept that other payments might follow in years to come. Dorothy-Grace Elder's point was that those subsequent payments might not be as large as the expert group suggested, with which I will not quarrel because that might prove to be the case.

I am not sure that I picked up Dorothy-Grace Elder's third point correctly, but, for various reasons, I want to help all of those who contracted the virus through contaminated blood products. I would have thought that my proposals cover some of her points about the financial and other difficulties.

Just to clarify, I mean the people who were diagnosed but who will get nothing—

We have two other questions to get through.

Sure. On you go.

I have a question about the clawback of benefits. Let us leave aside the question whether the decision on the legal interpretation of the Scotland Act 1998 would be definitive. If the Westminster Government accepted the proposal in principle, but said that it would still claw back benefits in respect of the ex gratia payments, what would be the minister's approach?

We would argue our case strongly. The issue is on-going and logically follows the resolution of the fundamental issue of the Parliament's powers. We have pressed hard on the issue of clawback and we will continue to do so because it is in our interest.

The issue is not really about the Parliament's powers, but about a political decision at Westminster.

I hope that my answer flagged up a certain amount of political intent to argue strongly on the issue.

Do you worry that the free personal care for the elderly issue set a precedent?

That was a different issue in many ways, so I do not think that there is a question of precedent. Free personal care does not influence the way in which we will argue on the hepatitis C issue.

Do you believe that there is a potential role for a joint ministerial committee, or would the Privy Council have to be involved?

All sorts of informal discussion can take place, but the Scotland Act 1998 is clear. I probably missed out a lot of the detail of schedule 6 to the Scotland Act 1998, so that would be good bedtime reading for members.

My question relates to recent media reports about the difficulties that some haemophilia patients have had in obtaining medical records from a particular period. I welcome the minister's directive to NHS trusts to provide available medical records, which he issued following those reports. However, there is concern that records are not always available or complete. In the course of your investigations into the matter, have you found that to be the case generally in the NHS? Are records sometimes not available, or have they sometimes been destroyed after a given period? If that is the case, could not that hinder the legal action that people might take?

I was very concerned about those general issues, which is why I made it clear that records should be available. Indeed, there is legislation on that—it is United Kingdom legislation and it is slightly complicated, but it is clear that it should apply. When concerns were expressed, it was not always clear exactly what was being referred to, although particular trusts were mentioned and we asked their representatives about the concerns. If people have more information, I would be keen to hear it but, as far as I know, the medical records concerned were made available.

There might have been issues around how much information was included on those medical records. That is a different issue, in particular as it pertains to things that happened 20 years ago or so. As far as I know, the medical records were not missing in the sense that Janis Hughes suggested. All that I say on the matter is quite general, because nobody came directly to me and gave details of the records concerned. I am keen to know from people about records that they did not get so that we can carry out more detailed investigations. The trusts that were referred to said that they had handed over the medical records that were available.

Will you clarify whether people have legal redress if the records that they seek to help them with their cases are not available? I understand from having discussed the matter with my local NHS board that there is no legal obligation on boards to maintain records after a certain time.

Various issues arise. The issue of legal redress came up with regard to the Scottish information commissioner. Because UK legislation was involved, that individual would have a role in ensuring that data protection legislation was enforced and that any available records were handed over.

I think that Janis Hughes is moving towards the issue of records' being incomplete. I would have to take legal advice on what the position would be now with regard to incomplete records from 20 years ago. The important matter for us now—for which we have responsibility—is to ensure that the records are up to date, complete and so on.

On whether people have legal redress if records were incomplete 20 years ago, I think that I would have to write to Janis Hughes about that, because I would have to hear a legal opinion on the matter.