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Report of the Expert Group on Financial and Other Support

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REPORT OF THE EXPERT GROUP ON FINANCIAL AND OTHER SUPPORT

4. THE SITUATION OF PEOPLE WHO HAVE BEEN INFECTED WITH HIV OR HCV AS A RESULT OF RECEIVING BLOOD, BLOOD PRODUCTS OR TISSUE TRANSFER FROM THE NHS IN SCOTLAND

BACKGROUND

4.1 We were asked to consider as part of wider considerations 'the situation of patients who have contracted HIV and/or HCV from blood transfusion or treatment with blood products'. The background is set out in Chapter 1 and Annex F.

4.2 Presently people who have contracted HIV through receiving blood, blood products or tissue from the NHS benefit from the arrangements via the Macfarlane and Eileen Trusts, whereas people who contracted HCV under exactly similar circumstances do not. We believe that infection with HCV brings about adverse effects for the people involved similar to those experienced by people infected with HIV. Furthermore, the way in which people were infected with HCV was exactly the same as those who became infected by HIV. We feel that this represents an inequity that should be addressed by introducing new arrangements.

4.3 We considered evidence on a scheme which might operate on broadly similar principles to that of the Macfarlane and Eileen Trusts. This would mean recommending that each person who could demonstrate that they were infected with HCV as a result of receiving blood, blood products or tissue from the NHSScotland , would receive a lump sum payment. We also considered evidence from the publication by the Scottish Executive entitled 'Hepatitis C: Essential Information for Professionals' which suggests that:

  • around 20% of those infected with Hepatitis C will clear the virus at the acute stage.

Of the 80% who do not:

  • around 20% may never develop physical symptoms;
  • 60% will develop long-term symptoms of liver damage - with the potential to progress to cirrhosis, liver cancer or liver failure.

CONCLUSIONS ON HEPATITIS C

4.4. We conclude that we should have regard to the loss suffered by the individual in recommending new arrangements for Hepatitis C sufferers. Furthermore, we conclude that the support arrangements for people suffering from the disease should be improved.

4.5 We considered that our recommendations below are consistent with our remit. We gave consideration to whether our recommendations would represent a 'fair deal for all patients' as indicated in Note 2(c) of our remit. The proposed arrangements address an inequity between two groups of patients who were harmed by exactly the same set of circumstances (i.e. the inadvertent provision of blood, blood product or tissue contaminated with a virus). We therefore feel that the recommendation does satisfy this test.

4.6 We appreciate that spending resources of this nature inevitably means that money is being used which would otherwise be spent on health care in general. However, we feel the circumstances justify the introduction of these new arrangements for Hepatitis C sufferers.

ESTIMATIONS OF COST

4.7 We believe funding the proposed compensation payments is likely to cost between 62m and 89m maximum. This would comprise 2.5m in awards made at 10,000, 49.4m in awards made at 50,000 (40,000 plus 10,000), and between 10m and 37m in awards that are assessed on the basis of Common Law Damages. The cost would be spread over a number of years due to the time it is likely to take for people to become aware of their condition and for the condition to progress to a relevant trigger point.

4.8 We received advice from our advisers who drew on information contained in a Paper by Dr Kate Soldan, an epidemiologist at the Department of Health's Public Health Laboratory Service Communicable Disease Surveillance Centre. She had written a previous paper dealing with HCV infection in England. The estimates which our advisers made of the cost of providing the sums described in our first Recommendation involved numerous assumptions made by Dr Soldan. The estimate was that 3,498 (or in round figures 3,500) people in Scotland had been infected by blood transfusion and tissue transfer. Of these, 1,886 were considered likely to be deceased by 1995 leaving 1,612 survivors. Because of their age and state of health, no more than 50% of the survivors should be assumed to be alive today. That means in round figures 800 survivors, and 2,700 deceased. As regards haemophiliacs, we were advised that a total of 500 were likely to have been infected as the result of receiving blood products, 135 of whom are likely to be deceased, leaving 365 still alive. These figures were used as the basis for our estimated costs and are summarised below:

Surviving

Deceased

Blood and Tissue Patients

800

2,700

Haemophiliacs

365

135

Total

1,165

2,835

Total estimated number of individuals infected via blood, blood products or tissue: 2,835 plus 1,165 = 4,000

4.9 In calculating lump sum payments, we had regard to figures paid by the Macfarlane Trust to HIV patients. We concluded that where patients had died, their Executors and dependants would succeed to any claim. We then had to consider what proportion of infected persons would be likely to claim. We had regard to information from England regarding the operation of the Macfarlane Trust. We also bore in mind that people who have been infected with HCV via blood transfusion, are often unaware of their infection, and may never become aware, particularly if other unassociated medical conditions supervene, and it has been a long time since the date of likely infection. In the event, having regard to all the considerations placed before us, we decided to apply a take-up figure of 31%.

4.10 On the basis of material before us, including the Scottish Executive publication Hepatitis C: Essential Information for Professionals, we concluded that 20% of the 4,000 infected patients would be likely to clear the virus within 2 to 6 months. We decided that such patients should each receive a sum of 10,000 for anxiety, stress and social disadvantage only. The remaining 80% of the 4,000 infected patients who had developed chronic HCV should each receive an additional sum of 40,000 (ie a total of 50,000). We also concluded that 16% of the 4,000 infected patients would be likely to suffer serious deterioration, eg cirrhosis, liver cancer, or other similar conditions. They should receive compensation calculated on the same basis as common law damages. Accepting a take-up of 31%, as explained above, we thus arrived at a total of 62m or 89m depending on differing estimates of the outlay on payments calculated on the basis of common law damages. We regard our figures, and particularly the figure of 89m, as representing the worst case scenario.

RECOMMENDATIONS ON HEPATITIS C

4.11 In addition to the abovementioned compensation we believe it is important that the affected individuals receive additional support in other areas. We therefore also recommend the following:

4.12 We further recommend:

The Scottish Executive should agree to make compensation payments as a matter of urgency to all people who can demonstrate, on the balance of probabilities, that they received blood, blood products or tissue from the NHS in Scotland before the dates when they were made HCV-safe and who were subsequently found to be infected with Hepatitis C virus, as follows:

A an initial lump sum of 10,000 to cover inevitable anxiety, stress and social disadvantage;

B an additional lump sum of 40,000 to those who develop chronic Hepatitis C to cover pain and suffering;

C in addition, those who subsequently suffer serious deterioration in physical condition because of their Hepatitis C infection e.g. cirrhosis, liver cancer or other similar serious condition(s), should be entitled to full compensation. This compensation should be calculated on the same basis as common law damages, taking account of the payments made under A and B above;

D where people who would have been beneficiaries of these arrangements are deceased and their death was not due to the Hepatitis C virus, the above payments should pass to their Executors. Where their death was due to the Hepatitis C virus, compensation should be paid to their Executor and relatives in the same way as relatives are entitled at common law in terms of the Damages (Scotland) Act 1976, and in addition same sex partners - both to be assessed on the same basis as common law damages.

E people who receive any payment under legal liability arising from alleged negligence or breach of statutory duty, from the Scottish Ministers, or any of the constituent authorities of the NHS in Scotland, in respect of having been infected with Hepatitis C should not qualify for these arrangements;

F people who are already in receipt of payments linked to HIV infection from the Macfarlane Trust, Macfarlane Trust Special Payments Trust, Eileen Trust or the associated government Scheme of Payments should have these payments taken into account when compensation is assessed for the purposes of C;

G people who have become infected with Hepatitis C as a result of the virus being transmitted from a person infected by blood, blood products or tissue from the NHS in Scotland shall be entitled to compensation on a similar basis to those who have been infected directly in this manner.


The Scottish Executive should consider how it could fund and develop other mechanisms for supporting people who suffer from HCV including services delivered by voluntary organisations. In particular, additional support in the following areas should be considered:

(a) Access to understandable information on HCV

(b) Counselling Services

(c) Access to information on benefits available

(d) Advice and assistance in securing appropriate and adequate assurance and insurance

(e) Setting up a pro-active publicity campaign spearheaded by the Health Education Board for Scotland

(f) Improved access to palliative care and symptom management services when appropriate.

THE GROUP'S REACTION TO THE SCOTTISH EXECUTIVE'S RESPONSE TO THE PRELIMINARY REPORT

4.13 The recommendations made in our Preliminary Report, which was published on 6 November 2002, are contained in Annex G. In response to our Report, the Minister for Health and Community Care intimated that the recommendations contained in paragraph 4.8 of the Preliminary Report required careful consideration from both financial, medical and legal perspectives. He also stated he was investigating the possibility of providing some form of ongoing financial support to those experiencing serious long-term harm and hardship. We were disappointed that the Minister had not accepted our preliminary recommendations on Hepatitis C in full.

4.14 On 11 December 2002, Lord Ross and Mr Philip Dolan gave evidence to the Health and Community Care Committee in support of our Preliminary Report. The Minister also gave evidence. The Minister stated to the Committee that he was prepared to be flexible about who might qualify for payments, but that he did not intend to make the 10,000 payments to all Hepatitis C sufferers. He also indicated that implementing our proposals in full would take too much money from the health budget, and that he could not contemplate making more than 10 million available for each of three years.

4.15 The Minister also indicated that problems arose in relation to devolved and reserved powers. Following on our meeting of 19 December 2002, we sought clarification from the Minister on this matter. By letter dated 10 January 2003, the Minister stated that a question might arise as to whether the ex gratia payments proposed could be reserved on the grounds that they provided assistance for social security purposes, and that another issue was the effect such payments might have on existing social security entitlements. As a result, we decided that we could not finalise our Report by the end of December.

4.16 On 20 January 2003, the Minister again appeared before the Health and Community Care Committee and described his latest thinking on the matter. He stated that he now proposed the payment of 20,000 to everyone who contracted Hepatitis C from blood products and who was still alive. He also later stated in his evidence that this payment should be made to "everyone who has the virus" and wrote to us in those terms. A copy of the Minister's letter is contained in Annex H. He further proposed payments of 25,000 to those at the cirrhosis, cancer of the liver or more advanced stage of the illness. In relation to our Category A, this was included with Category B. He also indicated that his advice was that a liver biopsy would be required to determine whether an individual had developed chronic Hepatitis C, and that it was not acceptable to require people to undergo such a procedure.

4.17 The Minister's latest proposals are welcome insofar as payments are proposed for some people who have contracted Hepatitis C from blood products. However, we are disappointed that our recommendations are not to be implemented fully. On the assumption, as now appears, that payments of 20,000 are to be made to those who have the Hepatitis C virus, it is clear that some of those described in our Category A will not receive any payment. Those excluded by the Minister will include those who have had the virus and have subsequently cleared it and particularly individuals who have had the virus and its consequences for some time and where it has been cleared as a result of treatment. We consider it unjust that such people should be excluded from the 20,000 payment.

4.18 We have concerns regarding the Minister's response to our Categories B, C and D. We still feel that additional payments should be made to those who develop chronic Hepatitis C (our Category B.) We understand that there are tests other than liver biopsy which could establish chronic Hepatitis C on the balance of probabilities (the normal civil law test).

4.19 We welcome the fact that some additional financial provision is to be made to those covered by our Category C but we are concerned that such additional payments are to be restricted to 25,000. We remain of the view that the additional payments for them should be calculated on the same basis as common law damages.

4.20 While we appreciate the Minister's desire to focus on people who are alive, we also believe it is manifestly unjust that no payments are proposed for those covered by our Category D (people who are deceased). This, in particular, can only serve to increase the worry and frustration of those who are alive because they might not survive to qualify for such a payment. For those who have died, it can only add a feeling of unfairness to the grief of the relatives, especially when the delay which cuts off compensation is no fault of the deceased. If the Minister is concerned about the category of relatives being too wide, he could of course restrict it to payments to immediate relatives and dependants, eg spouses/partners and children.

4.21 There has been much discussion about a cohort of current identified sufferers. While it is clear that the needs of these people are of the utmost urgency, we believe that all in the categories we have listed should be compensated as soon as possible.

4.22 We continue to believe that there is a moral obligation to provide compensation for people who have contracted Hepatitis C through receiving blood products from the NHS in Scotland, and that it is wrong that such people should be treated less favourably than people who have contracted HIV under similar circumstances. We do not consider that justice will be done unless our Recommendation is implemented in full, or at least to a greater extent than is presently proposed by the Minister.

4.23 We have considered paragraph F1 Schedule 5 of the Scotland Act 1998 and do not consider that the compensation payments we are recommending can fall within the definition of benefits as defined in paragraph F1. Our intention always was to provide for compensation and we have therefore made this more explicit. On reconsideration, it also appears to us more appropriate to recommend that compensation be made direct rather than through the mechanism of a discretionary trust.

4.24 When the Minister appeared before the Health and Community Care Committee on 20 January 2003, he spoke among other things about the question of whether what was being proposed would be within the powers of the Scottish Parliament. He indicated that discussions had been taking place at official and ministerial level with the Westminster Government about the vires issue. At one stage he gave the impression that that issue was under the control of the Westminster Government. We believe that the question of whether the Scottish Executive has power to do what has been proposed by the Minister in response to our Report is a devolution issue within the meaning of the Scotland Act 1998 (1998 Chapter 46) (see Schedule 6 to the Act, paragraph 1c)). In terms of paragraph 34 of Schedule 6, the Lord Advocate has power to refer any devolution issue which is not the subject of judicial proceedings to the Judicial Committee of the Privy Council. The Lord Advocate is a member of the Scottish Executive, and accordingly at any time it would be open to the Scottish Executive to instruct The Lord Advocate to refer this issue to the Judicial Committee. If the Westminster Government is disputing the vires of what is being proposed by way of compensation for the people who have contracted Hepatitis C from blood products, we recommend that the Scottish Executive should take immediate steps to have the issue referred to the Judicial Committee by the Lord Advocate.