The Hepatitis C Action Plan for Scotland: Draft Guidelines for Hepatitis C Care Networks Royal College of Physicians of Edinburgh Friday 12 October 2007
CONTENTS 1.0 ACCOUNTABILITY AND ORGANISATION 2.0 POLICIES AND PROCEDURES 3.0 TESTING 4.0 SPECIALIST REFERRAL 5.0 MANAGEMENT AND TREATMENT 6.0 CARE AND SUPPORT 7.0 COLLABORATION AND PARTNERSHIP WORKING 8.0 PATIENT INFORMATION AND AWARENESS-RAISING 9.0 EDUCATION AND TRAINING 10.0 MONITORING, EVALUATION AND AUDIT
1.0 ACCOUNTABILITY AND ORGANISATION 1.1 Statement Responsibility for delivering a strategy for Hepatitis C prevention, treatment, care and support lies with the local NHS Board and the designated Executive Lead for Hepatitis C. 1.1.1 The prevention, treatment, care and support of Hepatitis C are key components of the NHS Board s development activity. 1.1.2 Lines of accountability, responsibility and communication are clearly defined throughout the organisation. 1.1.3 The NHS Board and prisons has a mechanism in place for carrying out audit of Hepatitis C services against performance indicators. 1.1.4 Performance indicators for Hepatitis C should be part of the performance management of NHS Boards by the Scottish Government. 1.1.5 The NHS Board should work in partnership with local authorities, the voluntary sector and people living with and affected by Hepatitis C in the development and delivery of the Hepatitis C strategy and services. 1.2 Statement There are appropriate structures and processes in place for the development and implementation of a local strategy for Hepatitis C testing, treatment, care and support. 1.2.1 There is an adequately resourced, appropriately constituted and functioning -disciplinary Hepatitis C network (e.g. a managed care network) with responsibility for planning and delivering local Hepatitis C testing, treatment, care and support. This Hepatitis C network may be a formal Managed Care Network and may have additional responsibilities for other blood borne viruses, but this must not negate its responsibilities or standards for Hepatitis C. 1.2.2 A lead clinician, appointed by the NHS Board or coalition of NHS Boards, is identified for the Hepatitis C network and is responsible for development of testing, treatment, care and support protocols. 1.2.3 Testing, treatment, care and support services provided by NHS, local authority, voluntary sector and the Scottish Prison Services shall be delivered in an inclusive, nonjudgemental and empowering environment to individuals living with or affected by Hepatitis C.
1.2.4 The Hepatitis C network includes representation from community stakeholders including the Scottish Prison Service (where appropriate), primary care, social work and other social care providers. 1.2.5 NHS Boards, and the Scottish Prison Service in collaboration with local authorities and drug/alcohol teams, shall ensure their locally constituted Hepatitis C network has clear referral pathways and processes to refer people living with or affected by Hepatitis C on to services that are appropriate to their individual needs. 1.2.6 Clear processes and structures will be established to support effective communication across all sectors and stakeholders (including people living with Hepatitis C) within the local managed network. 1.2.7 NHS Boards, and the Scottish Prison Service in collaboration with local authorities and drug/alcohol teams, will ensure care and support services (including addiction services) have appropriate policies and guidelines in place to provide a safe and supportive service with assured confidentiality, dignity and privacy.
2.0 POLICIES AND PROCEDURES 2.1 Statement Regardless of geographical location or entry route into services, people living with or affected by Hepatitis C have equity of access to all aspects of care. 2.1.1 The Hepatitis C network should develop and publish evidence-based written guidelines covering all aspects of testing, treatment, care and support. 2.1.2 The Guidelines should be developed in combination with Scottish Prison Service, social work and the voluntary sector in addition to health care professionals to take account of local services. 2.1.3 The Hepatitis C network is responsible for producing an Annual Report, incorporating performance indicators. 2.1.4 Copies of the protocols should be made available to all members of the Hepatitis C network. 2.2 Statement As a notifiable disease, people living with Hepatitis C should be reported to the Public Health Department. 2.2.1 A robust mechanism for the reporting of individuals with Hepatitis C infection from virology laboratories should be established.
3.0 TESTING 3.1 Statement High quality diagnostic services with ease of access testing are vital to the treatment of Hepatitis C. 3.1.1 Patients who are Hepatitis C antibody positive, should have a Hepatitis C RNA test (RT- PCR) carried out. All tests should be performed in an accredited laboratory. 3.2.2 Hepatitis C antibody testing should be available at easily accessible venues across the NHS Board area including prisons. 3.2.3 All pre-test information should be provided by leaflet and post-test discussion provided for Hepatitis C RNA positive individuals.
4.0 SPECIALIST REFERRAL 4.1 Statement A primary aim of Specialist Referral and Treatment for assessment is the delivery of a cure for Hepatitis C to the greatest possible number of appropriate individuals. 4.1.1 All individuals who have Hepatitis C infection should be offered referral to clinical services with specialist expertise in Hepatitis C infection. Such services should have a multi-disciplinary team. Fast track access to addiction services, clinical psychology, psychiatry social work and other social care providers etc. should be available. 4.1.2 A holistic medical and social assessment should be carried out involving appropriate members of the team with a view to implementing a care plan designed to deliver monitoring and/or treatment (including treatment or addiction). 4.1.3 Effective assessment of alcohol use should be undertaken and treatment offered if required. 4.1.4 NHS Boards shall ensure a holistic shared care strategy is developed and adopted across their locally constituted Hepatitis C network in order to maximise engagement and contact with people infected by Hepatitis C at all stages to retain them on an established care pathway. 4.1.5 In order to reduce the number of lost patients, a robust system should be implemented to track individuals. This system requires to be functional both in the community and within the prison system and, importantly, between the two. 4.1.6 Individual centred care and referral pathways for Hepatitis C shall be clearly defined and monitored across the local Hepatitis C network.
5.0 MANAGEMENT AND TREATMENT 5.1 Statement Individuals with Hepatitis C may have complex needs during treatment that requires a systematic approach to care. 5.1.1 A holistic shared care approach shall be adopted across a locally constituted Hepatitis C network with appropriate processes, structures and procedures in place to enable necessary information exchange and communication. All support, care and assessments shall be clearly documented throughout the patient journey. 5.1.2 Processes, procedures and guidelines shall be agreed by the local Hepatitis C network to support effective information exchange between all agencies involved in the joint care of an individual. This will be designed to optimise the co-ordination of shared treatment, care and support being delivered in accordance with the wishes of the patient. 5.1.3 To achieve access into care and successful completion of therapy patients require support and information. The network must ensure that patients have timely access to information about Hepatitis C in a format suitable for them. 5.1.4 People living with Hepatitis C should have an individual plan of care developed between the patient and members of the Hepatitis C network. 5.1.5 The plan of care should address cultural and linguistic differences. 5.1.6 The care networks will develop care pathways responsive to all patient groups. For patient groups with multiple needs in particular those with addiction problems, existing key workers for their other problems will play key roles in the delivery of therapy, with support and supervision from specialist treatment staff. This should be provided on the same site as the other treatments care and support that the patient is receiving. This will require the appointment of additional nurse specialists in Hepatitis C. It will require change in working practice to make diagnosis and treatment a core part of the working practice in addictions services. 5.1.7 The care networks will develop care pathways for patients faced with difficulties accessing conventional medical care. For those in rural and remote areas, outreach services and shared care protocols with primary care should be developed. For prisoners shared care protocols between prison medical staff and treatment services should be in place, supported by outreach services, so that a full treatment service is available within prison. 5.1.8 The clinical services with in the care pathway, will ensure that patients who are not cured of the virus remain in follow-up and under surveillance for the hepatic complications of Hepatitis C infection. 5.1.9 Patients will receive the most effective therapy available for their infection.
6.0 CARE AND SUPPORT 6.1 Statement Individuals living with or affected by Hepatitis C shall have their physical, emotional and lifestyle support needs assessed at each stage of their journey. One to one or group support shall be offered where indicated, tailored to individual need. The NHS Board will work with local authority and voluntary sector partners and prisons to ensure that patients have the necessary support to maximise engagement with therapy for Hepatitis C. 6.1.1 Services provided by NHS, the voluntary sector, prisons and local authorities shall be delivered in an inclusive, non-judgemental and empowering environment to individuals living with or affected by Hepatitis C. 6.1.2 Lifestyle management, harm reduction, health and personal well being shall integral components of Treatment, Care and Support Services provided for people living with or affected by Hepatitis C. 6.1.3 Site based and outreach delivery models of care and support services should be delivered flexibly to ensure they are fully accessible to individuals living with or affected by Hepatitis C.
7.0 COLLABORATION AND PARTNERSHIP WORKING 7.1 Statement The planning, design and delivery of services for Hepatitis C shall be undertaken collaboratively and seamlessly as part of a locally managed cross sectional Hepatitis C network. The locally managed Hepatitis C network must ensure that there are structures and mechanisms in place to involve patients with Hepatitis C in the development of a) strategy and policy and b) the planning, design and development of services. 7.1.1 Regular and effective communication with people living with or affected by Hepatitis C shall be facilitated through information media and meetings using accessible formats, languages and locations. 7.1.2 Opportunities for people living with or affected by Hepatitis C to provide representation and input to service design and developments shall be afforded and supported. Inclusion regardless of lifestyle or route of transmission shall be promoted.
8.0 PATIENT INFORMATION AND AWARENESS-RAISING 8.1 Statement Patients need high quality information to understand their disease and undergo therapy. The health and care professionals need to be aware of the impact of Hepatitis C infection in their areas of practice. 8.1.1 Clear, accessible information should be available to those at risk of Hepatitis C infection. Information should have a standard, national element and element covering the local picture and local services. Information should be tailored to the needs of discrete groups (a variety of formats should be considered and care should be taken to ensure readability). 8.1.2 Information for prisoners should also take account of the needs of different groups (e.g. sentence length, stage in sentence). The opportunity should be taken to provide appropriate information to remand prisoners who many not have been in contact with other services prior to their arrest. 8.1.3 Staff and volunteers within care and support services shall be trained and educated to a high standard in line with appropriate professional competencies to enable services to be delivered effectively and consistently.
9.0 EDUCATION AND TRAINING 9.1 Statement Staff who provide clinical and non-clinical care for Hepatitis C infected individuals should have received appropriate training to perform their role and should be able to demonstrate that relevant competencies have been achieved and maintained. 9.1.1 Future appointees to consultant posts providing direct clinical care must have obtained and maintained specialist certification in a relevant specialty, which will ordinarily be in Hepatology, Infectious Diseases or Gastroenterology. 9.1.2 All consultants providing Hepatitis C must participate regularly in continued professional development (CPD) directly related to Hepatitis C care on at least an annual basis, including activities at a national and/or international level. 9.1.3 Where junior doctors provide Hepatitis C care on behalf of a consultant, the junior staff should have clear protocols to follow and a consultant should oversee their work. 9.1.4 Training standards, roles and relevant competencies should be defined for non-medical specialists, including Hepatitis C nurses, pharmacists and counsellors. 9.1.5 Non-medical Hepatitis C specialists should also demonstrate their participation in a programme of regular CPD that is appropriate to their area of expertise and their professional background.
10.0 MONITORING, EVALUATION AND AUDIT 10.1 Statement Continuous data collection and monitoring of service performance should be an integral part of the work of all units that provide treatment and care for Hepatitis C infected individuals. Rationale Regular audit is an important clinical governance activity. Regular local audits allow units to assess their performance against agreed national standards. Regular national audits of Scottish Hepatitis C and care providers will allow outcomes in different areas to be compared. This will, in turn, give service providers the opportunity to assess their performance against peer units. 10.1.1 All providers of Hepatitis C clinical services should have local procedures in place that allow for the continuous collection of key demographic and clinical variables, as well as treatment outcomes. These data should be stored electronically at a local level, within a secure electronic database, to facilitate oversight and regular audit. 10.2.2 Locally held clinical data should be recorded in a format that can be readily compared with data from other centres in Scotland. The use of the Scottish National Hepatitis C database is therefore strongly encouraged. 10.2.3 Adequate IT and data entry support should be provided by NHS Boards to ensure that data capture is robust and reliable. 10.2.4 Providers of non-clinical services should also have procedures in place to collect and monitor appropriate data on workload and quality.