Framework and Action Plan for the Prevention and Control of Hepatitis C
in Northern Ireland
The United Kingdom Harm Reduction Alliance UKHRA is a campaigning coalition of drug users, health and social care workers, criminal justice workers and educationalists that aims to put public health and human rights at the centre of drug treatment and service provision for drug users.
The UK Harm Reduction Alliance welcomes the publication of the Strategic Framework and Action Plan for the Prevention and Control of Hepatitis C in Northern Ireland, which goes some way in establishing the responses, required to tackle the many problems that Hepatitis C creates. However there are shortcomings in the current proposals for the implementation of the action plan.
The UKHRA has an active membership group in Northern Ireland who meet regularly to promote harm reduction. The following outlines the concerns identified by UKHRA members in Northern Ireland around each of the action points detailed in the Strategic Framework and Action Plan for the Prevention and Control of Hepatitis C in Northern Ireland, along with some general concerns about the implementation of the action plan.
ACTION 1: A public
information campaign for hepatitis C infection is required for
It would be useful to run an information campaign targeted at professionals first, in order to ensure that professionals are in possession of all necessary information when they are approached by members of the public in the wake of a public information campaign.
"Those groups with risk factors who may need to come forward for testing should be specifically targeted, e.g. injecting drug users." (Page 15)
It should be noted that the targeting of injecting drug users would require that the existing services provided to this group be significantly developed. Services currently in place are still in their initial phases of development and do not engage with a sufficient proportion of those currently injecting drugs, to facilitate an effective information campaign. Opportunities to provide injecting drug users on information about Hepatitis C are being lost by the poor provision of needle exchange within Northern Ireland. While pharmacy based needle exchange provides an essential service to drug users, the failure to expand needle exchange to out-reach, primary care, drug arrest referral, and statutory and voluntary agencies providing services for drug users is reducing opportunities for drug users to receive lifesaving information and advice outside of a pharmacy environment.
There is also a large group of people who have used drugs intravenously in the past but no longer do so. This group will be much more difficult to reach and some thought needs to be given to how these individuals can be provided with information/testing without stigmatizing them.
ACTION 2: Further
work is required under the auspices of the Northern Ireland
It is important to note that the majority of injecting drug users are not in contact with drug services. In order to reach the injectors it will be necessary to develop existing outreach services and to develop new initiatives such as "backpacking" services which bring clean injecting equipment to those who cannot, or will not, use existing needle exchange services. The development of services in this area will require the allocation of resources. A similar recommendation to the government has been put forward by the Northern Ireland Affairs Committee in their final report on The Illegal Drugs Trade and Drug Culture in Northern Ireland, Session 2002-2003 (Recommendation 39:191) Despite a recognition by the government of the importance of expanding needle exchange beyond pharmacy provision there has been no progress made towards this. (1)
In order to effectively provide information to injecting drug users it is necessary to consult with user groups to establish how to best distribute information to those not in contact with services. It will also be necessary to consult with these groups in order to find out their concerns around testing for hepatitis C and to establish what type of service they would be willing to engage with. It is also essential to support these groups with adequate levels of funding and support, for example, when requesting the services of a user representative onto a working group, consideration should be given to appropriate fee for their time and contribution. Training on hepatitis C for service users should also be considered, as they are likely to be able to provide credible information to their drug using peers.
ACTION 3: DHSSPS should issue further guidance during 2004/2005 on prevention of transmission of serious communicable diseases, including hepatitis C, in healthcare settings.
ACTION 4: All Trusts should ensure that staff are familiar with the risk factors for transmission of hepatitis C infection in healthcare settings, and the measures necessary to prevent them. Trusts should also ensure all staff are aware of their obligation to make occupational health departments aware if they have had a risk factor for exposure to hepatitis C or have acquired hepatitis C infection.
This does not appear to be workable. Do members of staff have an obligation to make occupational health departments aware if they have had a risk factor for exposure to hepatitis C? Given that there is "now increasing evidence for sexual transmission" (page 8), does this mean that staff members would be expected to divulge their detailed sexual histories?
ACTION 5: DHSSPS
should ensure that during 2004 a comprehensive evaluation
The issue of surveillance
will depend on the issue of making hepatitis C a notifiable disease -
see Action 6.
ACTION 6: During 2004, DHSSPS should ensure legislation is developed and progressed to make hepatitis C a notifiable disease.
The inclusion of hepatitis C on the list of notifiable diseases will be likely to cause some difficulties for those suffering from the disease (particularly in finding insurance, mortgages, etc.) this will almost certainly have the effect of dissuading many people from being tested.
ACTION 7: DHSSPS should ensure that information is made available to all medical practitioners in Northern Ireland to enable them to (i) recognize the risk factors for, and symptoms of, hepatitis C infection, (ii) have an informed discussion with patients about hepatitis C, (iii) offer testing for hepatitis C infection to patients at risk and (iv) appropriately refer patients with hepatitis C for specialist assessment and management.
It would be more effective to provide appropriate training for medical practitioners, rather than only making information available to them. It would also be helpful to provide a central resource for information, such as a dedicated helpline.
Clarity is also needed when talking about testing for Hepatitis C. Does this refer only to HCV antibody testing or does it include additional PCR testing for those who are HCV antibody +. Simply testing for antibodies can cause unnecessary distress for those who are antibody + but PCR negative. Clear protocols need to be in place so that accurate and meaningful test results are given which can result in referral for treatment or reassurance that although exposed to the virus they no longer appear to carry active virus.
In relation to injecting drug users, point's 5.3.6 and 5.3.7 are particularly apposite. With respect to 5.3.6: community-based services are likely to be accessed more by this group, although it should be stressed that users should be consulted before the initiation of any services. Ballymena currently has the majority of injecting drug users in Northern Ireland and is poorly served by GUM services. (Mc Ellrath, 2002) This reduces opportunities for confidential testing. The resource of Nurse led clinics must be focused on targeting the patients in their community. In relation to 5.3.7, specialist services will need to ensure that they consider the wider issues of support for those patients who are injecting drug users. It is not unusual for a drug user with Hep C to have problems in taking a bus the 25 miles from Ballymena to Belfast for a 10am appointment. If the patient is daily-dispensed methadone or subutex they are further hampered and are unlikely to keep these appointments.
ACTION 8: DHSSPS
should include the establishment of the Hepatitis C Clinical
The appointment of a specialist hepatitis Nurse is to be welcomed. However, At least one nurse significantly underestimates the needs of patients with hepatitis C in Northern Ireland.
The Hepatitis C Clinical Service Network should include patient representatives.
ACTION 9: During 2004, DHSSPS should confirm the introduction of pegylated interferon as a therapeutic option for patients with hepatitis C infection. Strict clinical guidelines will need to be developed.
The clinical guidelines must address the issue of patients who are engaged in opiate substitution treatments and patients who experience problems with alcohol.
ACTION 10: A hepatitis C strategic framework and action plan implementation group, reporting to the DHSSPS Chief Medical Officer, should be convened to lead on implementation of the action areas.
It is important that patient representatives, including representatives of injecting drug users are included in the action plan implementation group as detailed on page 24 (para. 6.1). In order for this representation to be effective it will be necessary to allocate resources for the development of capacity in users' groups. It is concerning that drug treatment services, primary care; pharmacy or outreach workers are not included in the group. In order to effectively engage with drug users it is vital that services work together to meet their needs
It is our view that a specialist agency or resource should be established to support all of the above initiatives, given that the annual incidence is rising and is estimated at 3992. Without this resource, we do not feel that these actions will be implemented as effectively as they could be.
We are also concerned that the action plan does not set clear targets in relation to its action points, nor have timescales been detailed. Furthermore, we note that no financial resources have been identified either to support the implementation of the action plan or to provide treatment. In order for this initiative to have any success in preventing and controlling hepatitis C in Northern Ireland it is crucial that it is more than an awareness campaign. It must be developed into a fully funded strategy designed not only to increase numbers accessing testing but also able to receive treatment appropriate to their condition.