Plenary, 18 Jan 2001

Meeting date: Thursday, January 18, 2001

Official Report 747KB pdf

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Hepatitis C

The final item of business is a members' business debate on motion S1M-1454, in the name of Alex Neil, on hepatitis C.

Motion debated,

That the Parliament notes with concern that there are currently 10,000 people carrying hepatitis C in Scotland and that there may be 50,000 undiagnosed cases; acknowledges that hepatitis C can be treated in a cost-effective manner through a comprehensive system of education, screening and holistic treatment, and recognises the work of C-Level, Capital C and other such groups in their attempts to gain adequate funding so that they might tackle the issue.

I welcome members of Capital C to the gallery. Capital C is an Edinburgh-based voluntary organisation that raises awareness about hepatitis C; it is looking for funding so that it can take its message to an even wider audience. It has asked me to point out that, last year, it had what it thought was a successful discussion with members of the Health and Community Care Committee. It looks forward to hearing the response from committee members who attended that meeting.

I am sure that members from all parties will join me in recognising the work of Capital C and organisations such as C-Level in Glasgow. Capital C is organising the first national conference in Scotland on hepatitis C, which will take place on 28 March at the Festival Theatre in Edinburgh. I am sure that all members wish the organisation every success with that conference, which I encourage them all to attend.

Hepatitis C is a sleeping giant in Scotland. It is a substantial problem—10,000 people in Scotland are diagnosed as having hepatitis C and there are an estimated 50,000 undiagnosed cases.

HIV/AIDS, which has rightly been recognised for almost 20 years as a public health matter of major importance, currently affects 1,877 people in Scotland. That is substantially fewer than the diagnosed cases of hepatitis C in Scotland, let alone those cases that are still to be diagnosed. That puts the scale of the problem into perspective; hepatitis C affects about 25 times more people than HIV/AIDS does.

Despite that, the Scottish public are unaware of the nature and scale of the problem. Hepatitis C is a silent disease. The virus has a long incubation period; it can take 10 to 15 years before the victim shows symptoms of the disease. That is one reason why it is easy to ignore the problem or to sweep it under the carpet. By the time that the size of the problem becomes apparent in about 20 years' time, it may be too late to tackle it as effectively as we could if we took preventive measures now.

What is Scotland doing to find the 50,000 undiagnosed cases? Unfortunately, it is not doing a lot.

Will Alex Neil clarify one point? The Scottish Centre for Infection and Environmental Health figures show that there are 10,161 confirmed cases. The centre says that the total number of cases is about 40,000—a several-fold underestimate. Alex Neil is saying that there are 50,000 undiagnosed cases, which would take the total up to 60,000. Does he mean 40,000?

No. The most recent estimates that I have seen take the figure of undiagnosed cases up to 50,000. The substantive point remains the same, irrespective of whether the figure is 40,000 or 50,000. We must take preventive action now rather than do what we have done in other situations, when we have waited until it is too late and have ended up with a huge bill in terms of suffering and of financing medical treatment.

I am not here to greet about the Executive. I welcome the additional £1 million that the Executive has given to health boards in Scotland in the current financial year; it has increased their budget from £6.1 million to £7.1 million for prevention work, primarily on AIDS and hepatitis C.

In its drugs inquiry, the Social Inclusion, Housing and Voluntary Sector Committee did some useful work in highlighting the risk of hepatitis C, especially to those who inject drugs intravenously. However, as the Minister for Health and Community Care, Susan Deacon, recently admitted in a parliamentary reply to me, there is still no national screening programme. In refusing to implement such a programme, the Executive has taken the advice of people such as the deputy chief medical officer, Dr Andrew Fraser. Dr Fraser is on record as saying:

"There is little point in screening for the virus if there is little you can do for the patient".

He has also said:

"We must know more about the disease before we progress to some form of screening."

Like, I suspect, many people outside the chamber, I do not agree with those arguments.

The data collected by SCIEH, along with the information kept by the health boards, tell us a great deal about hepatitis C. We know that 87 per cent of people diagnosed with hepatitis C are between 15 and 44 and that 56 per cent of them have injected drugs. However, a significant minority—44 per cent—have been infected in other ways. The only way of finding out how people have become infected is to run a national screening programme.

We know something else about hepatitis C—it is spreading fast. The number of people diagnosed with the virus has doubled in the past four years alone. Even if we did not have all that information, not knowing about hepatitis C is no excuse for not doing enough.

The whole point behind a national screening programme and raising public awareness is to tell people that hepatitis C can be prevented. Although there might not yet be a vaccine, if people know what the disease is and how they can avoid being put at risk, the number of cases will fall.

Scotland can and should undertake a screening programme for the disease and implement a substantial public awareness and education programme about it. If we do not do both those things, we must be prepared to put up our hands in 15 to 20 years' time, when the extent of the problem can no longer be ignored, and accept our part of the blame. Countries such as the US and France are already taking effective action. It is estimated that the costs of treating those who are currently undiagnosed could be as high as £200 million, which is much more than the cost of implementing the Sutherland report.

The message of this debate must be that it is time for Scotland to wake up to the problem of hepatitis C. It is time for action; it is time to introduce a national screening programme; and it is time for a substantial investment in public awareness and education. I hope that the minister will address those issues. This is not a party political issue; it is a human issue. It is a major issue about the health of the nation. It merits the Parliament's attention and deserves urgent action by the Executive and others.

First, I apologise to the chamber as I will not be present for the winding-up speech; I have to go for a medical check-up. I hasten to add that I am all right. However, I will read the minister's response with great interest.

Alex Neil has covered the size and scale of the epidemic, and I do not want to repeat what he said. I think that the figures are 40,000 or 40,000-plus; however, we are facing a very serious public health problem. As the general manager of one of the three health boards in my regional constituency said, it is a time bomb under the national health service not just in terms of the suffering for those infected by hep C but in terms of the resource implications of the problem. We must develop a national strategy. Now that we have the very detailed special needs assessment programme report that was presented to the minister in August, I want the Executive to implement a national strategy that covers prevention, screening and treatment. There is an unacceptable unevenness on all three issues throughout the different health board areas.

As Alex Neil said, we must increase awareness of prevention. We must also promote needle and syringe exchange; it must be as good in Fife as it is in Ayrshire and Arran. We must have outreach services, particularly to smaller communities and to rural areas. We must ensure that methadone maintenance is available to heroin addicts, as that would mean that they would be taking methadone rather than injecting. We must promote screening of high-risk groups. I differ from Alex Neil in my emphasis on this. I think that screening must be available for high-risk groups and for all others who want it. We must promote it and it must be equally available in all health board areas.

Central to our concerns must be treatment and management of the disease. All who suffer from hepatitis C must have access to the combination therapy of interferon alpha and ribavirin. I do not deny that that has serious resource implications for the Executive. A course of treatment can cost from £5,000 to £10,000 per case, but it is essential that the Scottish Executive provide the necessary resources for exactly the reasons that Alex Neil outlined. If it does not invest in treatment now, not only will it allow great suffering among those who are infected, it will have to pay far more in 15 to 20 years' time, when two out of three of those sufferers are likely, if untreated, to develop liver cancer or cirrhosis. That would lead to a demand for liver transplants, which we would be unable to meet.

We urgently need development of a national strategy. We have had the Scottish needs assessment programme report; we now need a strategy and action from the Executive. Otherwise, we could be faced with a disease that has a far more devastating impact on those who suffer from it, and on NHS resources, than HIV/AIDS.

Members who have read the Scottish Parliament information centre report on hepatitis C will know that it refers to petition PE185 from a Mr Thomas McKissock. Mr McKissock is one of my constituents and I assisted him in preparing his petition, which asked the Health and Community Care Committee to conduct an inquiry into the plight of those who have contracted hepatitis C from contaminated blood products.

Much of the focus has been on people who suffer from haemophilia. Mr McKissock is not a haemophiliac; he contracted the virus through treatment in the national health service during what was thought to be fairly routine surgery. The problem, as I understand it, is that the number of people in Scotland who might have been infected in similar circumstances has not been assessed.

Through the petition and through subsequent input to the Health and Community Care Committee's inquiry, we aimed to persuade the Executive to address compensation. Written answers at Westminster have asked the Department of Health to assess whether there ought to be specific compensation payments for people in such circumstances, but the idea has been ruled out: ministers said that sufferers should continue to seek benefits

"through the benefits system in the same way as other NHS patients who have suffered non negligent harm."—[Official Report, House of Commons, 6 May 1999; Vol 330, c 454W.].

Part of the problem with Mr McKissock's case is that it predates the screening of blood supplies. The question is who, if anyone, was negligent. No one involved at that stage could be proved negligent, but nor was my constituent negligent. He is now a very ill man, and surely his quality of life and the way he has to live should be recognised. As I said in the debate on victim support, people do not necessarily want financial compensation; they are seeking some recognition that the system went badly wrong for them and that they have suffered as a result. I know that Mr McKissock and others like him will welcome the thrust of today's debate and would encourage the Executive to look at treatment and prevention so that problems of hepatitis C, eloquently outlined by Alex Neil, can be addressed.

I ask the minister to consider the issue and tell us whether we can get information about the number of people who are suffering from hepatitis C in circumstances similar to those of Mr McKissock. Do we know the extent of the problem? If they are only a small number, can we at least provide some sort of recognition and compensation to make their plight easier in what will, in essence, be the last days of their lives?

I am glad that Cathy Jamieson referred to compensation. I want to speak on behalf of people who are suffering from haemophilia.

Winding the clock back about 19 years, I was one of those who made the first ever Scottish documentary on AIDS—at a time of hyped-up terror in the community. At that time, many in Scotland—doctors, nurses, blood transfusion centre experts—were pleading for heat treatment for blood products and the Thatcher Government turned them down. That measure would have cost only a few hundred thousand pounds at the time, but the Thatcher Government was importing American blood, which can contain skid row blood—blood for sale. It did that for a while out of cheapness. At that time, hepatitis C was not being identified. Susan Deacon said a few weeks ago that hepatitis C was not identified as such until the late 1980s or early 1990s. That is true, but what was being detected was non-A and non-B hepatitis. When something as big as AIDS is identified, we can expect that there will be some other problem there as well.

The responsibility rests with the state and politicians, not with doctors. That is why I was annoyed when I heard that the inquiry would be into negligence—it was to be skewed to deal with the doctors and the blood transfusion centre workers and so on as if they had been negligent. No one believed that they had been negligent—the negligence was entirely political. That continues to this day. The Government in Scotland and the Labour Government in England were not negligent—they are innocent—but they bear the responsibility of the state; the historic responsibility of one Government to compensate innocent people for something that has happened to them through the actions of the state.

The Government has accepted responsibility in other cases and it has paid out compensation. There is no reason why it cannot pay compensation to hepatitis-C infected haemophiliacs in Scotland. There are not many of them, but their lives are a daily tragedy. That money could be paid on an ex gratia basis—no more years of those people's lives need tick away. The Executive has a moral duty to do so and I appeal to the Deputy Minister for Health and Community Care to take that message back to the Executive.

I thank Alex Neil for securing this debate. One of the strengths of the Scottish Parliament is that we can address issues such as hepatitis C and work to raise awareness and address serious problems in Scotland.

I will not repeat the comments that were made by the depute chief medical officer, but if we do not screen because we do not know about a disease, we are going nowhere. Whether we move forward on one front or another, we must move forward in some way. Surely a screening programme would be the first step towards identifying and measuring the problems that exist and the problems that we might have to address. Equally, further research should be done to ensure that there is greater understanding of the disease and that the appropriate support, advice and treatments are made available. As other members have said, the head-in-the-sand approach will get us nowhere. I feel that it is more appropriate to set out proper guidelines than the plethora of confusing information that many people download from the internet.

I was alarmed to read today that nine out of 10 patients with acute hepatitis have no symptoms. That must be a serious worry. Were they aware, they could adapt their lifestyles and get treatment to address the problem. It is reassuring that half of the patients will benefit from treatment. There is undoubtedly scope for a public health campaign. We need to depart from the view that hepatitis C is caught and spread only by drug users. With an increase in body piercing and tattooing, more and more people should be informed of the dangers involved in what would seem to be quite an innocent practice.

Given that it is believed that between 50 and 80 per cent of drug-using prisoners are hepatitis C sufferers, would this not be an ideal starting point for a programme of screening, drug rehabilitation and counselling aimed at stopping the problem spreading even more widely? It would also give us an excellent opportunity to test the effectiveness of herbal remedies, acupuncture and other treatments and advice on lifestyle changes—which tend to crop up in any information that we come across about hepatitis C.

I understand that a treatment known as SHARP—substitute harm reduction prescribing—has been developed by a prison doctor in Scotland. Given that the Executive's health plan makes a commitment

"to put more resources into tackling the modern epidemics of HIV, Hepatitis C and Chlamydia"

could some of those resources be allocated to prisons in the first instance, and could progress be made to develop a Scotland-wide strategy to include trials of innovations in treatment?

Finally, I ask the minister to outline the Scottish Executive's response to the Scottish needs assessment programme report, which was published last summer—the Executive was to state its conclusions.

I, too, congratulate Alex Neil on getting this debate, which is on an important topic. I will not reiterate all the elements that have been covered by other members. It is generally accepted that we are dealing with an unknown quantity. There are 10,000 known cases, but various numbers have been cited in the chamber and it is anyone's guess how high the actual figure might be. In any case, hepatitis C will give rise to a major cost for the health service in the not-too-distant future.

There are several strands that we must follow in tackling the problem. The first stage was the publication, last year, of the SNAP report. That is a necessary prerequisite to proceeding with a step-by-step, rational strategy.

The motion mentions a screening programme. The problem is what is meant by a screening programme. A mass screening programme would not be suitable. What would be appropriate, however, is a system whereby members of high-risk groups are readily and easily able to obtain the necessary information about their particular circumstances.

I have worked in a prison setting. Testing can be—and is—done in prisons, and support can be provided to individuals with the condition.

I understand that the main reason for liver transplants in the United States is hepatitis C. We are already moving in the same direction; the need for transplants will pose a major problem.

It is already generally evident in NHS accounts that the provision of funds for negligence claims, or to cover similar problems, has risen enormously over the past four or five years. Although that is not particular to the subject of hepatitis C, I believe—in the context to which Cathy Jamieson and Dorothy-Grace Elder referred—that there will soon come a time when we should ask the Executive to consider fault in our health system.

The time is coming when we need to consider the adoption of a different system: that of no-fault compensation. The present system is too difficult and the courts' involvement makes for far too long a process for dealing with compensation. It is very expensive and it prevents people admitting risk, admitting that things have gone wrong and admitting near-misses. The time is coming when we will have to debate that.

I do not think that a mass screening programme is appropriate, but we need to have high-risk screening. I am sure that the minister will say this in his reply, but I think that, in taking this issue forward, we will need to prepare a programme that matches the growing need in this area.

I congratulate Alex Neil on securing a debate on such an important matter and welcome Capital C to the gallery. It is a group that I am well aware of, as it lobbied me on the issue some years ago, as an Edinburgh MP. As a result, I had a meeting with Professor Peter Hayes. Progress has been made since then, not least because of the group set up under the Scottish needs assessment programme, known as SNAP, and its report. That expert group comprises doctors and other health professionals, including Professor Hayes. SNAP was asked to undertake the review by the deputy chief medical officer—the person Alex Neil referred to in a different context—reflecting our concern about the developing problem and the comparative lack of knowledge of many aspects of the infection.

The SNAP group's aims were to describe the emerging epidemic; to collate current knowledge on prevention, investigation and treatment; to describe the current status of the services available to meet the challenge; to make estimated projections of the implications in the Scottish population and of the services required; and to make recommendations. A copy of the SNAP report is available in the Scottish Parliament information centre and I commend it to members.

The SNAP group identified the transmission routes for hepatitis C. Injecting drug use and sharing needles and equipment has been by far the most common route in Scotland. Other routes, which are much less common in Scotland, are contaminated blood and blood components, prior to the introduction of screening for hepatitis C, as mentioned by Cathy Jamieson in relation to her constituent; unprotected sexual intercourse with a hepatitis C-positive partner; from mother to child during pregnancy; from patients to health care workers through needle-stick injury; and from contaminated equipment used in skin and body piercing. I repeat that of those routes, injecting drug use is by far the most significant and injecting drug users are the main vulnerable group to be targeted by prevention efforts.

The SNAP report makes 20 recommendations, most of which are directed at health boards. I should explain to members that the purpose of SNAP reports is to provide boards with a review of an area of health care and to give them a template against which they can reassess their services and reconfigure them as necessary. SNAP issues its reports in draft to health boards as well as to the Executive and other health and voluntary interests. SNAP then issues the report findings after taking account of comments. The hepatitis C report was issued in final form in September last year. The key issue now is for health boards to implement its recommendations. Those recommendations cover all aspects of the response to hepatitis C, including prevention, detection, treatment, surveillance and research. That underlines that progress will have to be made simultaneously across a wide front.

In reply to my question S1W-7523, the Minister for Health and Community Care said:

"It is expected that the report will be published in the summer, when the Executive will give its conclusions urgent consideration."—[Official Report, Written Answers, 15 June 2000; Vol 7, p 115.]

I appreciate what the deputy minister is saying about health boards, but is there scope for an Executive national strategy?

I do not think that there is a gap between the SNAP report and the national strategy, which Mary Scanlon suggests. SNAP is an expert group; we accept its advice and recommendations, which are at the heart of the national strategy.

The proposal in the motion is for a screening programme. The SNAP group considered that question explicitly, but concluded:

"systematic population screening of high risk groups is not justified at present, but counselling with the opportunity for testing should be offered to people in high risk groups as an integral part of discussion on the management of their risky behaviour."

The expert advisory group on hepatitis, which is a UK body, has also not seen fit to recommend a screening programme.

Does the deputy minister accept that a lot of the people who are vulnerable are unaware of the services that are available? I chaired the organisation that ran the national AIDS helpline, which was very important in making people aware of AIDS. Will the deputy minister consider introducing a similar helpline for potential victims of hepatitis C?

I cannot give an instant reply to that, but we will reflect on the idea.

In the light of increasing evidence that the newest drug therapies are proving effective, I agree that efforts should be made to detect those with long-standing infection who do not inject drugs or have ceased doing so, and to offer them treatment. In France—which Alex Neil referred to—such targeting of vulnerable groups, I think, occurs.

The SNAP report recommended that a national workshop on the prevention of transmission among injecting drug users should be convened. That was held in November. The event was useful, but the discussions confirmed that no quick fixes are on offer.

Progress must be made to reduce the amount of drug injecting and sharing of injecting equipment. In December, Iain Gray announced national targets for those reductions. The Executive will now require local targets to be set. Success in meeting targets will require renewed health promotion efforts and provision of information in appropriate formats to high-risk groups. An obvious opportunity for that is provided by needle and syringe exchanges, to which Keith Raffan referred. The provision of clean equipment also tends to discourage equipment sharing. The SNAP report and the HIV health promotion strategy report, which was published last week, recommend that health boards review and, if necessary, enhance needle exchange provision in their areas.

SNAP also recommended that consideration be given to introducing regulation of body piercing. Mary Scanlon referred to that. I am glad to say that I shall formally announce tomorrow the issue of the Executive's consultation paper on that subject.

I have only one minute left, so I will be brief. The Executive is providing record levels of funding to health boards through their general allocations. As promised in "Our National Health", we have decided to increase by £7 million over the next four years the resources provided for boards' HIV prevention activities.

We have told boards that, as the HIV health promotion strategy report recommended, they may apply those resources to the prevention of other blood-borne viruses, of which hepatitis C is the most significant at present.

The recently announced £100 million package for tackling drug misuse will include £6.3 million over three years for local and national public awareness initiatives. There will be full consultation to ensure that we have the best know-how on improving the quality of information and the messages that we convey on drugs prevention and education.

I reiterate that the issue is important for the Executive. We endorse the findings of the SNAP report and are determined that they should be implemented throughout Scotland.

Meeting closed at 17:47.