Health and Community Care Committee, 30 Jan 2002

Meeting date: Wednesday, January 30, 2002

Official Report 277KB pdf

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Hepatitis C

Agenda item 3 is hepatitis C. We are joined by the Minister for Health and Community Care, Malcolm Chisholm. Welcome, minister.

Thank you.

I am sorry that we have kept you waiting. We are running slightly late this morning. Members will recall that when we compiled our report on hepatitis C, we commented on the fact that the Executive had set up an internal inquiry into the issue, which had been adversely commented on by the Haemophilia Society and others. We suggested that it would be a good idea that, when such groups were set up in future, the Health and Community Care Committee should have some input into their remits and possibly some say over the people who served on them. We welcome the fact that the minister has accepted that suggestion and that the committee's input is being requested in the case of the new expert group on compensation. The minister has come to discuss the matter with us today.

We will go through the comments in the letter that we sent to you, which picked up on some of the outstanding personnel and remit issues, and we will then enter into a dialogue with you on that important group. Do you want to say anything before we ask specific questions?

No. I gave an undertaking to discuss the matter with you and that is what I am going to do. You made your position clear in the debate and I made clear the Executive's position. We do not agree entirely, but we agree on the way forward for the group. Some differences will emerge, but I hope that we can meet halfway on some of the issues. I will take your questions one by one and see how it goes.

We have a few questions on the membership of the expert review group on financial support arrangements. We welcome the fact that patients groups will be involved in that group, as we recommended. It might be appropriate for the expert group to contain two members from patients groups that have a direct interest in hepatitis C. There are two reasons for that. The first is the scale and seriousness of the hepatitis C problem. The second is the fact that we were aware, during the compiling of our report, that hepatitis C is a problem not only for haemophiliacs, but for non-haemophiliacs who have been infected. The Haemophilia Society is good at making the points that haemophiliacs might want to hear, but we want to broaden the group's membership to include representation of non-haemophiliacs.

I have no problem with that. I was going to suggest it, but I thought that I would rather wait and answer your questions one by one. I do not have a problem with that suggestion.

Okay. Will the Haemophilia Society be consulted on the identity of its representative? Will it be able to choose someone?

Again, I am quite comfortable with that suggestion.

It has also been suggested that there should be three lawyers on the expert group. Other committees have been hearing from people who do not hold lawyers in great esteem. However, do you agree that it would be useful to have three lawyers on the group to provide different perspectives? What different perspectives would you expect them to bring? Would it be beneficial to appoint a lawyer from a country that has introduced a no-fault compensation system?

There might be some difficulties with the latter proposal, although I imagine that it would be good for the group to hear evidence from such people. On your first question, I agree that lawyers might be able to bring different experiences to the group.

As an obvious example, it might be appropriate to have a lawyer who has worked with people who are pursuing claims because of harm that they have suffered. It could also be argued that it would be appropriate to have someone who has worked on the other side, on medical defence, but the former example, of someone who has worked with people who are pursuing claims, is perhaps the more crucial. Nevertheless, it might also be reasonable to have a lawyer who works on the other side of the fence, such as someone from the Central Legal Office who works for the health service in such situations. An academic lawyer might also be considered.

Those are the categories that I have in mind, but I am quite flexible. I think that it is appropriate to have three lawyers. If the chairman were a lawyer, there would certainly be no reason to have three other lawyers. However, it is reasonable to have a total of three lawyers, because of the strands that I have indicated. Members may want to suggest other strands that I have not flagged up. Some people have said things to me privately, but I do not know whether they want to go into such matters now.

Do you think that it would—

I am sorry, Dorothy-Grace, but—

Would it be appropriate to have a lawyer from the Irish Republic, which has already paid out no-fault compensation?

Minister, you do not have to answer that question.

Why not?

There is a convener for a purpose. It is Nicola Sturgeon's turn to ask a question. After that, I shall allow you to question the minister.

If the group had three lawyers, especially three commercial lawyers or lawyers working in private practice, it could be said—I say this as a lawyer myself—that lawyers have a vested interest in not having a system of no-fault compensation, because they make more money out of taking cases through the courts. However, as long as there is balance in the group in terms of points of view and backgrounds, the arrangement that you suggest is probably reasonable.

I am interested in why you think that there are problems in appointing a lawyer from another country to the group. The Chhokar inquiry, which was chaired by a judge from Northern Ireland, immediately springs to mind. I am not sure why there would be a difficulty with having a lawyer from elsewhere serving in the group.

It would be highly relevant to look at other countries. I am not persuaded that having a lawyer from another country, rather than simply examining what happens there or hearing evidence about it, would be particularly necessary. There are many other ways to find out what is happening. I know that there are specific circumstances in the Republic of Ireland, for example, which it would certainly be interesting to know about, but I do not think that we need an Irish lawyer in the group to get that perspective.

The committee's view was that there are certain lawyers—their names escape me at the moment, although they could be provided to you—who have done some very good work in that area, particularly in Ireland. They may have something valuable to contribute to the process. Will you think about that further? Even if you decide not to have one of those lawyers in the group, will you undertake to ensure that such experience will be fed into the process? We probably have something to learn from other countries.

I have already indicated that we will consider the experiences of other countries. I am sure that the group will be interested, as will I, to find out more detail about those experiences, which are relevant and interesting.

I urge the minister to give serious consideration to appointing a lawyer from the Republic of Ireland who has dealt in detail with no-fault compensation. Beyond that, I urge him to call one or two Government witnesses from the Irish Republic, which has gone through years of dealing with the matter, as we have. There has been a full public inquiry, which is reporting soon, and the Irish Government has already paid out no-fault compensation. Lawyers have played a key role in that process. I understand that you are willing to concede that there might be two lawyers, not three, in the group. Am I correct in that evaluation? Your written statement said that there would be three.

I said that there would be three in total.

I thought that perhaps you were saying that to have three is not necessary. I urge you to look at the Irish situation. You could get someone from Ireland to be in the group. Their presence in the group, rather than merely as a witness, would no doubt give added confidence to the representatives of patients and to others. We could then gain a large amount of information that we would not be able to gain fully from a one-off witness. That would be most useful.

On the experience of lawyers in the group, in recent years, specialist lawyers in the claims field have made significant inroads. In my previous career with Unison, we used lawyers who are now recognised in the profession as experts through their work for asbestos workers and miners, for example. I hope that people with similar expertise will be invited.

I do not think that the point that Dorothy-Grace Elder tried to make—not very successfully—on who should give evidence and who should not is a matter for us. Once we have discussed the membership of the expert group with the minister, we should leave it up to the group to determine how it should conduct its business. The committee certainly would not like somebody else telling us how to conduct our business.

The points that you have made are helpful, particularly the point on lawyers who have worked with people who have suffered harm and pursued claims. It would be entirely appropriate to have people with such experience in the group.

You suggested that it would be a good idea for the committee to consider the Republic of Ireland's experience. If there is no lawyer with a Republic of Ireland background or experience in the investigation group and if nothing in its remit says that it should consider the Republic of Ireland's experience, how will we know that it will not completely ignore that experience?

I think that the committee is going to make the point that it wants me to take things out of the notes.

I did not know that you thought that considering the Republic of Ireland's experience would be a good idea.

I am trying to respond to your question. The situation in the Republic of Ireland is interesting but different. The differences are as interesting as the similarities. Margaret Jamieson's point stands. If we appoint an expert and representative group with a remit, we must trust it to some extent to do its work.

Expert groups are famous for sticking to their remit. If something is not in their remit, they will not do it.

You are suggesting that there should be something in the remit that refers to consideration of the experience of other countries. I am prepared to think about that. The suggestion has not been made before, so I will not give an instant response, but we will certainly think about it.

That comment can act as a bridge from the membership of the group to its remit. The committee will note the minister's response. We did not raise that issue in our letter.

In the letter, we wanted to clarify your intent. The notes on the remit that you sent state:

"The group should note the existing approach that ‘the NHS does not pay compensation when it has no legal liability for the harm suffered by the patient'".

Will you clarify whether the group's intent is to consider whether that approach will be appropriate in the future or whether the definition of legal liability will have to be enlarged?

I struggled with that point in the letter. At one point, the phrase "dancing on the head of a pin" occurred to me, but that was probably unfair and perhaps due to the fact that I struggled to see your point. There is an argument that the group will consider the approach anyway, so why do we need to say that it will do so? However, paragraph 1 of the notes contains the best description of the current situation. The committee's report basically asked us to pay compensation where there is no legal liability. The notes merely state the current situation, which is that

"‘the NHS does not pay compensation when it has no legal liability'".

It is a statement of fact and no more than that.

So we were reading more into that than there probably is. The notes also state:

"The group should take into consideration the findings of the Review of Clinical Negligence by the Department of Health in England".

What is the timetable for that review? How will it be taken into account?

I have been told that the review group is nearing the conclusion of its work and will report soon.

I am also told that a white paper will be issued in England in the spring. We all know that, in Government, such things can slip, but there is no doubt that the review will be available during the first three months of the expert group's deliberations and before it make its preliminary findings. I am assured that there will be no problem.

The committee was disappointed that no express reference was made to hepatitis C in the expert group remit. The minister has received the committee's suggestions. We propose an addition to the Executive's intended remit setting out that, by the end of July 2002, recommendations should be made to Parliament on setting up a mechanism in relation to hepatitis C.

The committee accepts the moral argument for the payment of financial assistance to people who have been infected with hepatitis C. Committee members have articulated some of the more practical, pragmatic problems that we expect the expert group to report on.

In making its suggestions about the remit of the expert group, the committee had two main purposes: first, to see what can be done to assist those who have been infected with hepatitis C; and secondly, to try to build a compensation system that is more fair, equitable and workable.

That is the fundamental fault line in the debate, as if we all agreed about the matter, we would not be sitting here today. The Executive's position was made clear in the debate of 10 January 2002. I will quote two sentences that encapsulate our position. The first point is one that I have made more than once. I said:

"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."—[Official Report, 10 January 2002; c 5227.]

Secondly, and perhaps more fundamental to the point that was raised by the convener, I said that the approach that we are adopting

"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."—[Official Report, 10 January 2002; c 5228.]

I am aware and I accept that that shows movement on my part, but not as much movement as some members wanted. However, I moved from the hardline position that the Executive had taken. Contrary to some reports, exactly the same line pertains in England. I have moved to a position where we are prepared to examine the issue with an open mind. The committee's recommendation is for the Executive to jump over that point and—to echo another famous phrase from another famous occasion—take forward proposals. In the debate on 10 January, it was made clear that we would look at the issue with an open mind and that our recommendations would be based on general principles.

The committee's second recommendation goes much further than the position that we accepted in the debate. I accept that the remit ought to contain something about hepatitis C. At the moment, reference to hepatitis C is included in the note to the remit, which states:

"The group shall consider the situation of patients who have contracted HIV and/or hepatitis C from blood transfusions or treatment with blood products as part of their general considerations."

I am perfectly happy to include that in the remit. However, I cannot go further than our position of 10 January.

To include that in the remit would be a welcome move, as the fact that it was included in the note and not in the remit was the cause of some concern.

The minister also said in the 10 January debate that he would listen to what the committee had to say about the remit. It seems strange that you come to the committee today with a more or less closed mind on the crucial point that we are making. I think that I speak for the whole committee when I say that we feel strongly that the merits of giving assistance, financial or otherwise, to hepatitis C sufferers, has been established through—among other things—the committee's inquiry. To go back over those arguments would be to create duplication and prolong the agony of hepatitis C sufferers.

We feel strongly that the first task of the expert group should be to devise and recommend a scheme of financial assistance—distinguishable from a general no-fault compensation scheme but designed to bring about some kind of justice for people as quickly as possible. I am still not persuaded by the minister's arguments against that.

We disagree fundamentally on that point. There was a lot of agreement during the debate on 10 January but, if there was a fault line, it was on that point. I moved a significant distance, but not as far as Nicola Sturgeon wanted me to move. She cannot now say that, because I said that I would discuss the remit, I should just reject everything that I said on 10 January. That would be unreasonable. I made the Executive's position clear on 10 January and I have quoted it today. The door has been left open to allow the issue to be reconsidered. However, it would be wrong for me to say one thing on 10 January and then take up a completely different position today.

We will have to accept that that is where the fault line lies, but at least we have a way forward that will enable us, within the next six months, to resolve the issue. As Nicola Sturgeon knows, the issue will come back to the Parliament. We are setting up an expert group to consider the complexities and implications. As I have said, I will put a sentence in the group's remit about hepatitis C. I have agreed that we will have two people who suffer from hepatitis C in the expert group, as well as two other patients. I doubt if there has been an expert group with such strong patient representation. The make-up of the group will ensure that the issues are addressed. I accept that Nicola Sturgeon wants me to go further, but she is asking me to overturn the policy that I stated on 10 January. That would be unreasonable.

In the note on the expert group, the minister says:

"The group shall consider the situation of patients who have contracted HIV".

The minister mentioned complexities. We have asked that the group make recommendations on setting up a mechanism to provide practical and, where appropriate, financial assistance. How wide of the mark is our recommendation on practical and, where appropriate, financial assistance, when compared with the minister's recommendation that the group consider "the situation of patients"?

The fundamental point that I made on 10 January, among all the other points, was that we must have a coherent system that contains fundamental principles on the payment of compensation. That system would have consequences for people with hepatitis C.

The main difference between my position and the position of the Health and Community Care Committee is that the committee is saying that we should regard people with hepatitis C as a separate special case, whereas I am saying that we must have a coherent system that can guide our actions. If we do not do have such a system, we will simply be making policy incrementally—it will be one group today, another group next year and another group the year after that. We must have a coherent system that is based on clear criteria and principles. The expert group will consider that and, within that context, it will of course consider hepatitis C. However, we cannot prejudge the group's conclusions in the way that Mary Scanlon suggests.

I want to be clear about the timetable. On the general principles and remit, the minister has said that recommendations should be made by December 2002. Given that a component of the expert group will be people who are fighting for practical and financial measures for hepatitis C sufferers, when, beyond 2002, will you focus on assistance for those sufferers?

I said during the debate that I wanted that to be done within six months. That is why the note says:

"Preliminary recommendations should be made by the end of July 2002".

That applies to people with hepatitis C, or to people in a similar situation.

We want to come to a decision on the aspects about which the committee is most concerned as soon as possible after the summer recess. The recommendations should be available by the end of July—we said six months—and the matter will then come back to the Parliament. Other parts of the work might go on beyond that.

We are being realistic; I am trying to stick to the undertaking that I gave to have a delay of no more than six months, but I accept that the more complicated work on clinical negligence, mediation and any new arrangements might take a bit longer. The key part of the work, which is controversial and the part about which people are worried, should be completed in six months.

If I understand correctly what you have said, we are not as far apart as we thought. Am I correct in thinking that you will produce preliminary recommendations on practical and, if appropriate, financial assistance for hepatitis C sufferers by July 2002?

Yes.

The main concern is the time delay. I do not want to prejudge the outcome of the expert group, but when the recommendations are produced after six months they will not, in themselves, establish a system for payments, if that is the recommendation. Will there be a twin-track approach to allow a potential payment mechanism to be considered at the same time? When the recommendations are produced after six months, we do not want another time delay while a payment mechanism is established. Can work be done to ensure that a mechanism is ready to go if the outcome of the expert group is positive?

That alternative proposal prejudges the outcome. If the expert group reaches the conclusion that the committee wants, the mechanics of payment will not be a major issue and will not take the time that Shona Robison suggests. The fundamental work will be done on providing a coherent system. The mechanics would not involve a long delay.

Are you giving a commitment that, if the expert group has a positive outcome, there will not be a bureaucratic delay in implementing the recommendations? Are you saying that the practicalities of giving assistance to the people concerned could be in place in a short period?

That is my thought at the moment. It would not be appropriate to do the work in parallel as you suggest. That would be an odd way to go about things when we have decided that we must first establish a system that is based on general principles. It would not be appropriate to prejudge the matter. I understand Shona Robison's concern, but the outcome that the committee wants will not involve massive further delay.

Note 1 on the proposed remit states:

"The group should note the existing approach that ‘the NHS does not pay compensation when it has no legal liability for the harm suffered by the patient' and consider whether this is appropriate."

Our concern is the remit of the group and the number and type of people who will be on it. Some of us think that there might be a gap in the procedure when we try to get the minister's assurance that the group will cover a subject. That is what I said earlier in my comment to which Margaret Jamieson referred.

Will the minister assure us that the group will be able to take evidence on what many see as an overall state responsibility, rather than the responsibility of individuals in blood service units 20 years ago? The largest part of this problem was caused by Britain's buying in American blood products, even though America was a well-known high-risk area because of its paid donor system. We know that Britain was getting blood from prisons, for example. Can the minister assure us that he will seek to have that aspect of the issue highlighted?

I think—

It is very important.

I think that I speak on behalf of the committee when I repeat the point that Margaret Jamieson made earlier: it is not for us to suggest to people how they should conduct their inquiry.

I am asking the minister for his view.

It is not for the minister to suggest how the group should conduct its inquiry—even more than it is not for us to do that. I welcome the fact that we have a right to say who we think should be members of the group and what the group's broad remit should be. We have made use of that right this morning and the minister has responded positively. It is not for us to tell the group from whom it should take evidence and what that evidence should be.

I am making a suggestion.

I understood that the minister had indicated earlier that evidence from the Republic of Ireland would be considered. That has become a very pertinent issue. We must not close our minds to the fact that, although we are pursuing a particular line of inquiry for our report, other factors may be at play. It is part of the committee's role to help to uncover those factors. The minister has indicated that evidence from other countries, such as the Republic of Ireland, will be considered by the group. Will he confirm that?

I said that I would consider the point that has been made about the group's remit. That may be something to put in the notes. I thought that the committee would take a harder line on the notes, but it seems to be saying that they are okay. If we said that the group should consider evidence from the rest of the world, we might be tempting fate and the inquiry might take several years. Perhaps we can mention the evidence from the Republic of Ireland. I do not have a problem with that, because it is an interesting parallel. However, I repeat that in the Republic of Ireland there were different circumstances as well as similar ones.

We welcome what the minister has said about the number and identity of the patient representatives on the group, and his point about international comparisons. We welcome the fact that hepatitis C will be mentioned proactively in the group's remit and that preliminary recommendations will be made within six months, by July 2002. We also welcome the minister's comments in response to Shona Robison's question.

As the minister said, there is a fault line between his position and that of the committee. However, after today's discussion, we look forward to the health department producing a finalised remit for the expert review group that the committee can examine. I thank the minister for his evidence, which has been very helpful and useful.

That brings to an end the public part of this morning's meeting.

Meeting continued in private until 12:25.