Annual Report 2008
CONSULTATIVE COUNCIL ON HEPATITIS C
ANNUAL REPORT 2008
Contents
1. Chairpersons Statement
2. Membership
3. Annual report
4. Council Meetings
5. Consultative Council Budget
6. Consultative Council Hep C Information Day 2008
7. International Conference on Hepatitis C 2009 Organising Committee
8. Council Publications
9. Consultative Council Website
10. National Hepatitis C Database Steering Committee
11. National Consultants Committee
12. Seedling Research Group
13. Hepatitis C Insurance Scheme
14. Home Nursing
15. Home Support
Appendix I
Appendix II
Appendix III
The Consultative Council was established by the Minister for Health and Children on the 26 November 1996 by Statutory Instrument (No. 339 of 1996), to advise the Minister on all matters relating to Hepatitis C.
1. Chairpersons Statement
The Consultative Council continues to bring together clinicians, patient representatives and those working in the health services; its advisory role to the Minister for Health allows for the continued update of patient requirements through service development and the promotion of scientific research through the Hepatitis C Database.
The Council has worked hard over the last year to ensure that all HAA cardholders are provided with up to date information as to their entitlements to services under the HAA scheme and also that they are provided with information to help them cope with the challenges of living with Hepatitis C.
The Council hosted a very successful Information Day for HAA cardholders and their families in Croke Park February 2008, in addition the Council launched an exciting new and user friendly website which provides all information relating to services and how to access same. All Council publications are now available for download on the website. Under the auspices of the Council a group was set up to review existing publications and from this review both the Information Guide to Services and the 'Living with Hepatitis C Booklet' were updated and published during 2008. Copies of both publications were circulated to each HAA cardholder.
Dr. Elizabeth Kenny, Chairperson
2. Membership
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 support groups representing those who contracted Hepatitis C through the administration within the State of blood and blood products (Positive Action, Transfusion Positive, Irish Haemophilia Society and Irish Kidney Association) A new Council was appointed on the 1st of September 2006 and its term runs until 31st August 2009. A full list of Council members is attached in Appendix I.
3. Annual report
This is the eleventh Annual Report of the Consultative Council and covers the period January to December of 2008. This report endeavours to inform the Minister of all aspects of Hepatitis C that have come to the Councils attention.
4. Consultative Council Meetings
The Consultative Council met seven times during 2008; 16 January, 21 February, 21 April, 23 June, 21 August, 25 September and 24 November. Minutes from these meetings may be accessed at www.consultativecouncilonhepc.ie
5. Consultative Council budget
The Consultative Council secretariat function was transferred out to the HSE at the beginning of 2007. The Council budget remained in the Dept of Health until 1st February 2008 when it was transferred into a specific cost centre within the HSE, to be managed within HSE Palmerstown. Based on projected expenditure a budget totalling €150,000 was allocated; the income & expenditure accounts will be managed by council secretary and are included in this annual report. ( Please see Council expenditure appendix II )
6. Consultative Council Hepatitis C Information Day 2008
The Information Day 2008; ‘Hepatitis C – towards a better understanding’ took place on Sat 16th February 2008 in Croke Park Conference Centre. The format of the Day was changed to accommodate more informal workshop style sessions. Attendees were able to choose from a variety of workshops ranging from ‘Families dealing with Hepatitis C’ to workshops covering ‘Fatigue’, ‘Men’s Issues’ and ‘Psychological Issues’. During her introduction at the plenary session, Dr. Elizabeth Kenny introduced members of the Consultative Council who were present.
In addition this year there were designated ‘Information booths’; stands representing the Insurance team, the Support Groups and other available services were stationed in a communal area. Patients were able to visit these stands and speak to representatives on a one to one basis. A team of complementary therapists provided short ‘taster’ therapies to attendees. This year also featured an opportunity for patients to see first hand some of the latest medical equipment used in the diagnosis and monitoring of fibrosis and to familiarise themselves with its operation. There was a good attendance on the day and the program was well received. Evaluation forms were circulated and feedback was very positive.
( a program for the day and registration form listing workshops can be found in appendix III )
7. International Conference on Hepatitis C 2009 Organising Committee
The International Conference Organising Committee planned the third International Hepatitis C Conference, Hepatitis C – The 3rd decade and beyond and was co-chaired by Dr. Elizabeth Kenny and Ms Michele Tait meeting six times during 2008. The organising committee made excellent progress enlisting over 35 internationally acclaimed speakers. The Conference features 3 strands, ‘Clinical and Research’, ‘Living with Hepatitis C ’ and ‘Managing Hepatitis C within the Community’. This third program targets GP’s, Nurses and other health care professionals working in the community. To this end the Committee liaised with the ICGP and Nursing bodies to insure that a relevant and practical program was designed. Towards the middle of 2008 the program was well underway and by August all three programs were available on the designated Conference website at www.hepc2009.com . The conference was publicised throughout 2008; final announcements and posters were distributed and advertisements placed in relevant medical publications and websites. Accreditation from the ICGP and the RCSI were also sought. The organising committee continue to meet through 2009 up until the conference opening.
8. Council Publications
8.1 Information Guide to services
A project to update the Information Guide to Services under the auspices of the Consultative Council was completed in late 2007. The new Guide was distributed to all HAA cardholders and relevant service providers in spring 2008. The new Guide is also available electronically at the current location:
http://www.consultativecouncilonhepc.ie/publications.htm
8.2 Living with Hepatitis C Booklet
A decision was made in early 2008 to update the ‘Living with Hepatitis C’ booklet as much of the information was out of date. This piece of work was done through Consultative Council and the new edition of the booklet went to print towards the end of 2008. The booklet will be distributed in hardcopy but is available electronically at: http://www.consultativecouncilonhepc.ie
9. Consultative Council Website
A new Consultative Council website was developed during 2007 and work continued on creating a user-friendly informative website into 2008. The new website was officially launched by Dr. Elizabeth Kenny at the Hepatitis C Information Day in Croke Park in February 2008. The website will be managed within the Consultative Council Offices allowing immediate and more efficient updates. All Council publications, details of meetings, upcoming events and important contact information is available on the site which can be accessed at: www.ConsultativeCouncilonHepC.ie
10. National Hepatitis C Database Steering Committee
TheHealth Protection Surveillance Centre(formerly National Disease Surveillance Centre) established the National Hepatitis C Database under the auspices of the Centre. The National Database on Hepatitis C Steering Committee met five times during 2008; 30 January, 2 April, 29 May, 30 September and 27 November. Following the successful publication of the National Hepatitis C Database Baseline report in 2007, the HPSC team led by Dr. Lelia Thornton, published a user-friendly magazine style newsletter which included summarised details of the report. This newsletter was distributed to every HAA cardholder via the offices of the National Co-ordinator of Hepatitis C Services, Health Services Executive. The newsletter is available at: www.hpsc.ie/hpsc/A-Z/HepatitisHIVAIDSandSTIs/HepatitisC/HepatitisCDatabase/PatientNewsletter/File,3361,en.pdf
Throughout 2008 the challenge of increasing the consent rate for participation in the database was ongoing, this included a letter encouraging patients who had not yet consented to do so being distributed by the patient support groups. The consent rate currently stands at approx 75%.
The HCV database team, in conjunction with the eight designated hepatology units, continued to collect follow-up data throughout 2008 for the first annual report following on from the publication of the baseline report in 2007. The remote access system finalised this year in each of the designated hepatology units assists greatly in the collection of this data. Further to the Baseline report, the 1st annual report will continue to follow the natural progression of the virus allowing us to observe the various factors which impact on this progression. These reports will provide a unique resource for those wishing to understand the Hepatitis C virus and it will produce further opportunities for research as well as highlighting information that will be imperative in planning services.
Remote access to the database from the Units was available through 2008 allowing updates to chart information to be transmitted directly into the Database from within the units. During 2008 a Lab interface for remote lab access was also developed however, the system was piloted in St. Vincent’s which proved that it would not be viable or cost effective to develop lab interface systems in all of the hepatology Units.
Late in 2008 the Hepatitis C Database Steering Committee began work on a Health and Lifestyle Questionnaire which will be distributed within the HAA patient group.
11. National Consultants Committee
The National Consultants Committee were not available to meet until late 2008 when a meeting was scheduled for 24 November. The Agenda included an update on Council business and new developments. Unfortunately the meeting had to be postponed and will be rescheduled to follow the next ISG meeting which will take place in early 2009.
12. Seedling Research Group
The Consultative Council works hard to ensure that those infected with Hepatitis C within the State are informed as to their entitlements to certain health services and are provided with information on the challenges of living with Hepatitis C. To this end the Council continues to host Information Days and International Conferences. The Council has also produced a number of booklets and leaflets and continues to revise and update this information and ensure its dissemination. One of the key criteria for the effective delivery of ongoing services is evaluation through evidenced-based research. Early in 2008 The Council formed a subgroup to look at developing a seedling research program under the umbrella of the Consultative Council. This proposed Seedling Research Programme is designed to stimulate new research and support existing research activity in the area of Hepatitis C in Ireland. Such research can make a significant contribution to the lives of individuals and their families affected by Hep C and to aid in the appropriate guidance, planning and delivery of Hep C Services within the State. It is the considered view of Council that such a programme has a pivotal role to play in supporting the terms of reference of Council’s work in the future. The seedling research group convened 21st February and met four times during 2008. It was agreed that this group will apply for a bursary of approx €200,000 from the DOHC to fund seedling research grants. The group developed draft application, project assessment & scoring forms and began work on a business case for submission to the DoHC. This work will progress through to 2009.
13. Hepatitis C Insurance Scheme
The Hepatitis C Insurance Scheme launched in September 2007 is administered by the Insurance team within the Health Services Executive, The scheme enables HAA cardholder to access Life Assurance,Mortgage Protection Cover and Travel Insurance without incurring financial penalty for being infected with Hepatitis C and/or HIV through the administration of blood or blood products. Life Assurance and Mortgage protection were available upon launch. Travel Insurance became available in July 2008. Further information on the scheme is available at www.hepcinsurance.ie
Promotion of the scheme continues within the HAA patient group; a Newsletter detailing new information on the scheme was circulated to all HAA Cardholders via the offices of the National Co-ordinator of Hepatitis C Services, Health Services Executive in April 2008.
By the end of 2008 approx 450 HAA cardholders had applied to the Insurance Scheme for eligibility certificates, 78 had applied for Life assurance / mortgage protection and 111 had applied for travel insurance.
14. Home Nursing
The Clinical Nurse Co-ordinator based in HSE Palmerstown, early in 2008 established a comprehensive care system where individuals referred into the Home Nursing Services would be fully assessed in their home for home care which could include home nursing, continual care and where necessary home support. In April 2008 Ms. Breton presented an update on the home nursing service to Consultative Council which highlighted that many patients referred into the service, required continual care and support rather than clinical nursing. A steering committee was also established by Ms. Breton in an effort to define the home nursing service and to establish protocols and referrals guidelines and forms.
An evaluation of the home nursing service, to be conducted by the HSE initiated in 2007, continued through 2008. In addition a decision was made to commission an independent piece of research regarding the home nursing service. The commissioned research will provide an overview from a national perspective of the actual service needs relating to nursing care at home. The research will focus on views and evidence from a number of key informants including service users, service providers both hospital and community based and also from the nurse co-ordinator and colleagues working in the service. It is hoped that the research will provide a basis for the future planning of the entire needs of the cohort at home, in particular their home nursing service needs.
Ms Breton resigned her post in early June and recruitment began to appoint a new Nursing Co-ordinator and Ms Niamh Lavin integrated well into the post after being appointed in September 2008. The majority of Ms Lavin’s caseload, as was demonstrated by Maria Breton, require continual care at home as opposed to acute nursing care . The Home Nursing and Care services was discussed at many Council meetings during 2008, Council agree it imperative that comprehensive assessments are available to patients, to ensure that a full and medically appropriate Home care Package can be put in place ( ie. Home care / Nursing / Support / continual care ).