Consultative Council on Hepatitis C

ANNUAL REPORT 2001

1. Annual Report

This is the fourth Report of the Consultative Council on Hepatitis C to the Minister for Health and Children submitted under the provisions of Statutory Instrument No. 339/96, and covers the period 1 January to 31 December 2001.

Membership of the Council

Statutory Instrument No. 339/96 provides for the appointment to the Council by the Minister for Health and Children of sixteen members, six of whom are appointed on the nomination of the four representative groups. A list of Consultative Council members who served during 2001 is at Appendix A.

Meetings of Council

The Consultative Council met on six occasions during 2001. At two of these meetings leading researchers on Hepatitis C gave a presentation. Dr Elizabeth Kenny, Cork University Hospital outlined her ongoing research in respect of the Anti-D cohort. Dr Cliona O’Farrelly, who is a member of Council, gave a summary version of the presentation that she had delivered at the Annual American Association for the Study of Liver Disease’s Conference on current research in to Hepatitis C.

Dates of Consultative Council Meetings:

6 February 2001, 3 April 2001, 12 June 2001, 11 September 2001, 23 October 2001, 4 December 2001.

Working Group on the Implementation and Monitoring of the Review of the Health Services Available for Persons with Hepatitis C

The implementation and monitoring of the Review’s recommendations was undertaken by a Working Group of the Consultative Council, chaired by Ms Ann Broekhoven. The Group met on a number of occasions during 2001 and considered the responses from the Health Boards / Authority on the progress made by each Hepatitis C Unit on the implementation of the recommendations outlined in the Health Services Review.

The Working Group also prepared a submission for the National Health Strategy (Appendix B) and recommended that the model of service which applied to persons who contracted Hepatitis C through the administration within the State of blood or blood products should be considered for other categories of patients.

Dates of Health Services Review Working Group meetings:

3 April 2001, 17 April 2001, 22 May 2001, 29 November 2001.

Committee of Medical Consultants

The Committee of Medical Consultants, chaired by Professor John Hegarty, and whose remit was to agree treatment protocols, met on a number of occasions and have progressed this issue. The Committee have agreed that the current practice for liver biopsies and anti-viral treatments in Hepatitis C Units conformed to international published recommendations.

Initial preparatory work on the establishment of a National Hepatitis C Database is underway. Professor Hegarty has contacted the National Disease Surveillance Centre who have agreed to explore the possibility of establishing the database under the auspices of the centre.

Dates of Committee of Medical Consultants Meetings:

27 February 2001, 5 June 2001, 23 October 2001.

Working Group to organise an International Conference

The International Conference on Hepatitis C – Past, Present and Future will take place in June 2003 in Trinity College Dublin. The aim of the conference is to discuss new developments in research, treatment and management of Hepatitis C in a context that is as accessible to patients, busy health care workers and young researchers as those at the cutting edge. Members of the group have contacted international speakers who have agreed to attend and give a talk at the conference.

Dates of International Conference Working Group:

28 February 2001, 22 March 2001, 3 April 2001, 25 April 2001, 23 May 2001, 12 June 2001, 25 July 2001, 11 September 2001, 23 October 2001, 1November 2001.

Insurance Issues

The Report by Mercer Ltd, on insurance difficulties for persons who contracted Hepatitis C through the administration within the State of blood or blood products outlined two options for life insurance, (i) State insurance for death due to liver failure and (ii) State-financed insurance pool for those declined cover plus state subsidy of additional premium loadings. The second phase of research into these two options is underway and the Council is liaising with the Department of Health and Children on this issue.

8.Management of Death for Persons with Hepatitis C

The Consultative Council further considered the need for definitive national guidelines on the management of death, including funeral arrangements, of persons with Hepatitis C. This issue is of major importance to the Consultative Council. The Consultative Council wrote to the Standing Advisory Committee on the Prevention of Blood-Borne Diseases in the Health Care Setting, who in turn wrote to the Society of Clinical Microbiologists, in order to obtain clarification on the use of cadaver bags / post mortem restrictions for persons with Hepatitis C. The Standing Advisory Committee advised that cadaver bags may be used following the death of patients known to have Hepatitis C infection, however, that this should in no way restrict relatives access to deceased and that if cadaver bags are used, they should be folded down out of sight for the purposes of viewing the body. Council are in the process of confirming whether cadaver bags should be used.

9.Control of Infection through dialysis

The Council considered the concerns raised by the Irish Kidney Association on the possibility of infection through dialysis. The Irish Kidney Association prepared a paper on this issue for the Consultative Council which was forwarded to the Standing Advisory Committee on the Prevention of Blood-Borne Diseases in a Health Care Setting for consideration.

10.Eligibility to donate blood for persons with Hepatitis C

A Sub-group of the Consultative Council met with the Irish Blood Transfusion Service to discuss and finalise a leaflet on the Eligibility to donate blood for persons with Hepatitis C and their families.

11.Requests by the Minister for Health and Children for advice

No specific requests were made by the Minister for advice from the Council during 2001.

12.Other matters considered by the Consultative Council

A number of other matters relating to Hepatitis C were considered by the Council during 2001:

12.1The Consultative Council considered the new liaison arrangements and regional structures within the Eastern Regional Health Authority and have requested to be kept informed by the Authority on developments in this area.

12.2The Consultative Council launched its website:

12.3The Information Working Group, chaired by Ms Mary Rowe, Transfusion Positive, is in the process of finalising a re-written and updated booklet for persons with Hepatitis C – entitled “Living with Hepatitis C”. In addition, the Information Working Group discussed the information needs of parents of children with Hepatitis C and agreed that it would be more appropriate if the staff of Our Lady’s Hospital for Sick Children, Crumlin could prepare this booklet. A member of the nursing staff in Our Lady’s Hospital, Crumlin, has undertaken to organise the text for publication early in 2002.

Dates of Information Working Group Meetings:

6 February 2001, 3 April 2001, 22 May 2001, 12 June 2001, 18 July 2001, 29 August 2001, 8 October 2001, 1 November 2001.

12.4The Council considered and agreed that the logo for the International Conference would be adopted as the logo of the Consultative Council.

Ruth Barrington

Chairperson

9 April 2002

Appendix A

CONSULTATIVE COUNCIL ON HEPATITIS C – LIST OF MEMBERS

Dr Ruth Barrington (Chief Executive of the Health Research Board) (Chairperson)

Ms. Paula Kealy (Positive Action)

Ms. Josephine Mahony (Positive Action)

Ms. Aideen Connolly (Transfusion Positive) – to 3 January 2002

Mr Michael Madigan (Transfusion Positive) – from 30 January 2002

Ms. Mary Rowe (Transfusion Positive)

Ms. Rosemary Daly (Irish Haemophilia Society)

Mr Mark Murphy (Irish Kidney Association)

Professor John Hegarty (Consultant Hepatologist, St. Vincent’s University Hospital)

Ms. Sheila Marshall (Eastern Regional Health Authority)

Ms. Ann McGrane (A.P., Department of Health & Children)

Ms. Ann Broekhoven (Director, BUPA)

Mr John Murphy (Biological Sciences Dept., Cork Institute of Technology)

Dr Cliona O’Farrelly (Director of the Research Labs, St. Vincent’s University Hospital)

Dr Anne Clancy (Former Area Medical Officer with NEHB) – to 15 January 2001

Ms. Catherine Dunne (Centre for Education, Counselling and Psychology) – to 27 August 2001

Ms Kitty O’Neill (Public Health Nurse, ERHA) - from 21 March 2001

Mr Ian Carter (Deputy Chief Executive, St. James’S Hospital)

Appendix A: List of Members

Appendix B

Submission on the National Health Strategy

Summary

The Consultative Council on Hepatitis C is a statutory body established by the Minister for Health in November, 1996. To date, the functions of the Council are to advise and make recommendations to the Minister, at his request or on its own initiative, on all aspects of Hepatitis C.

Primary care and hospital services for persons infected with Hepatitis C through the administration within the State of infected blood and blood products were agreed in December 1995 between the Minister for Health and the four representative groups. In addition, the range of services provided is constantly monitored and new or enhanced services are made available if required.

The Consultative Council recommends that the model of care which has been put in place for this group of persons infected with Hepatitis C is one which should be considered for other client groups.

While the Council acknowledges that the services are not perfect and are still being developed, we are of the opinion that these services have worked reasonably well to date, have proved responsive to patients’ needs and have the capability to continue to develop and improve in the future. The response to the Hepatitis C infection of blood and blood products has been one of the major challenges to face the health services in our time, and the sustained response of the health services to this challenge will continue to be one of its most important goals in the coming years. The Council is of the view that the strategic approach adopted by the health services to date in meeting this challenge is excellent and demonstrates the benefits of a partnership approach accompanied by targeted resources. However, the Council would like to express its concern regarding the availability of resources for the wider group of patients with Hepatitis C and to put on record its concern that the needs of this group should be adequately addressed.

Model of Service

The elements which are unique to primary and hospital care services for the cohort of patients infected through blood and blood products, and which have contributed to the success of this model of service are as follows:

the establishment of the Consultative Council on Hepatitis C;

the report of the “Review of Health Services Available for Persons who Contracted Hepatitis C through the Administration within the State of Blood or Blood Products”;

committee of medical consultants who provide services for persons with Hepatitis C;

Hepatitis C Liaison Officers in each health board / ERHA;

provision of designated hospital units;

advocacy by the patient support groups (Positive Action, Transfusion Positive, Irish Kidney Association, Irish Haemophilia Society);

liaison between with service users and service providers at both primary care and hospital level;

communications;

commitment to funding.

Main Elements of Model of Service

The main elements of this model of service are described in greater detail below:

a.Consultative Council on Hepatitis C

The Consultative Council has sixteen members, appointed for a three year period. Six members are nominated by the support groups representing persons with Hepatitis C and 10 by the Minister. The Ministerial appointments cover a cross-section of interests and backgrounds, including a Consultant Hepatologist, a representative of the scientific research community, a Department official and one of the liaison officers appointed by the health boards to provide a contact point for Hepatitis C patients.

The Council operates on the basis of equality and teamwork and has proved a useful forum for pursuing issues of national concern. Among the achievements of the Council to date has been the completion of a major Review of Health Services for Persons with Hepatitis C.

b.Review of Health Services Available for Persons who Contracted Hepatitis C through the Administration within the State of Blood or Blood Products

Following a request by the Minister to review services, the Consultative Council on Hepatitis C contracted Professor Hannah McGee, Director of the Health Services Research Centre at the Royal College of Surgeons in Ireland, to carry out the review on its behalf. The review involved a substantial input from all four of the representative groups. Health service providers and managers were also involved in the process. The scope of the review is extensive and includes the availability and delivery of appropriate services relating to health care and support for persons with Hepatitis C.

The recommendations in the report cover the full spectrum of health care services, ranging from recommendations which concern consultant medical staff, nursing staff, paramedical and support staff, and administrative staff. The Council was pleased to note that in many areas the services being provided are broadly meeting the needs of persons with Hepatitis C although there are areas where improvement is necessary.
Copies of the Review were disseminated widely: each person with Hepatitis C received a copy, as did each service provider (including general practitioners, dentists, opticians and pharmacists).

The Consultative Council consider that this review process provides an example of how service users and service providers can participate actively and co-operatively, to their mutual benefit, in the monitoring and improvement of their health care services.

c.Committee of medical consultants who provide services for persons with Hepatitis C

One of the recommendations of the Health Services’ Review was the formation of a committee of medical consultants who provide services for persons who contracted Hepatitis C from the use of infected blood or blood products within the State. The Review recommended that the function of the Committee would be to agree protocols for the treatment of this cohort of patients. At the request of the Council, the Minister recently established the committee, under the chairmanship of Dr. John Hegarty, Consultant Hepatologist, St. Vincent’s University Hospital (Dr. Hegarty is also a member of the Consultative Council). The Committee has had its first meeting and has delegated one of its members to draw up a draft discussion document on treatment protocols.

As far as the Consultative Council is aware, this Committee is unique in the health services and is an example of the responsiveness of the health services at all levels to the needs of this group of patients. The partnership approach which has been developed over the years between the service users and the health care professionals has proved to work well, and will provide many valuable lessons to other areas of the health services in the future.

d.Hepatitis C Liaison Officers

Liaison Officers have been appointed in each health board to co-ordinate the primary care services provided under the * Health (Amendment) Act 1996, and to provide a contact point for Hepatitis C patients and the four support groups. The Liaison Officers are an important focal point between the primary care service providers and the service users.

To meet the identified need for a more seamless service, the Department has recently funded a new post of Hepatitis C Co-ordinator in the Eastern Regional Health Authority. The aim of this new post will be to provide an integrated approach to Hepatitis C services at primary and secondary care levels throughout the region. The Consultative Council is of the view that the provision of integrated services specifically targeted at particular client groups is the best way forward to respond effectively to emerging needs.

Note - the Health (Amendment) Act, 1996, provides for the health boards to make available, without charge, a range of services to persons infected with Hepatitis C through the administration within the State of blood or blood products, including GP services in relation to all medical conditions; drugs and medicines; home nursing service; dental, ophthalmic and aural services; counselling services in respect of Hepatitis C; home support services; other services, as appropriate.

e.Designated Hospital Units

Hospital services are provided for persons with Hepatitis C in designated Liver Units in Beaumont, St. James's, the Mater and St. Vincent's University Hospitals in Dublin, Cork University Hospital, University College Hospital Galway, St. Luke's Hospital, Kilkenny and Our Lady’s Hospital for Sick Children, Crumlin. Dedicated funding for this cohort of patients has been ring-fenced for the Liver Units in these hospitals, and both staffing and facilities have been improved. Hepatitis C Liaison Officers have been appointed in each hospital to address the enquiries and concerns of Hepatitis C patients regarding hospital services and to act as a principle point of contact.

f.Advocacy by the Patient Support Groups

The four main patient support groups (Positive Action, Transfusion Positive, Irish Kidney Association, Irish Haemophilia Society) perform a vital role as advocates for their members and are represented on the Consultative Council.

Regular meetings are held at national level between the support groups, service providers and the Department in order to monitor services and identify emerging needs on an ongoing basis. Relationships are also being developed between the regional representatives of the support groups and the Liaison Officers to extend this liaison between service users and service providers to health board level. The support groups also meet with individual hospitals and consultants to discuss specific issues of concern to their members.

The Consultative Council considers that patient advocates have an important role to play in the development of services which are responsive to people’s needs, particularly the needs of the more vulnerable sections of society.

g.Communications

A communications strategy should be a vital component of any national health strategy. The Consultative Council, the support groups, the Department and the service providers co-operate to ensure that persons with Hepatitis C are kept informed of their entitlements. Quality of communication and clarity in respect of entitlements are essential to ensure equity of access to services. The provision of information will also empower people to participate more fully in their own healthcare. Communication is a two-way process, and the input of the support groups, together with the ongoing contacts between service users and providers is an integral part of the process of monitoring and improving services.