Testing, Treatment, Care and Support
Two Working Groups - the Testing, Treatment, Care and Support Group and the Education, Training and Awareness-raising Group - undertook activities to gather robust data to inform the development and expansion of Hepatitis C Testing, Treatment, Care and Support services during 2008 and beyond. The key objectives were to describe the existing provision of Hepatitis C testing, treatment, care and support services and the training for professionals responsible for delivering such services across Scotland, and to identify gaps and issues relating to service/training provision.
The approach adopted to gather the evidence, involved self-administered questionnaire surveys and face-to-face interviews with service providers, the analysis of existing data held on laboratory and clinical databases, examining scientific literature and undertaking analytical studies to estimate the current and future clinical and financial burden of Hepatitis C related disease in Scotland ( http://hepccentre.org.uk/Search.aspx?S=Service ).
The following is presented: background information, a summary of the key findings and, for each key issue, evidence supporting the proposed action(s) to be taken and desired outcomes.
- 60,000 Hepatitis C antibody tests were undertaken, 12
- 1,500 new diagnoses were made (2.5%), 12,13
- an estimated 250 and 110 Hepatitis C infected persons, respectively, developed cirrhosis and liver failure, 3,14
- 25%, 21% and 15% of testing, was performed in the general practice, hospital in-patient and hospital out-patient settings, respectively, 12
- 4,000 patients attended 16 Hepatitis C Treatment Centres, 3
- 450 patients were initiated on Hepatitis C antiviral therapy, 3
- the Hepatitis C Treatment workforce comprised 12.5 Whole Time Equivalent ( WTE) nurses and 4.5 WTE consultants, equating to one WTE nurse/300 patients and one WTE consultant/900 patients accessing specialist services. 3
- of an estimated 38,000 living persons chronically infected with Hepatitis C, 14,500 had been diagnosed, 8,000 had ever attended specialist clinical services for chronic Hepatitis C and around 2,000 had received antiviral therapy, 3
- an estimated 2,100 Hepatitis C infected persons had progressed to, and were living with, cirrhosis. 3, 14
Summary of Key Findings
- In recent years, very considerable progress in developing high quality services for Hepatitis C infected persons in Scotland, has been made; there are, however, several issues which need to be addressed.
- Insufficient numbers of infected persons, particularly former IDUs, are diagnosed.
- Widespread variations in the clinical management of Hepatitis C infected persons exist.
- The training of the Hepatitis workforce is substandard.
- There is a lack of integration among primary care, specialist, addiction, prison and social care services, resulting in many Hepatitis C infected persons failing to complete a successful passage through the diagnostic, referral, treatment and care pathway.
- Insufficient numbers of infected persons are being administered antiviral treatment, and resources, particularly for specialist clinical management and social care, including the support of persons journeying through the patient pathway, are inadequate.
All of the above findings are inter-related.
Widespread variations in the approach to the clinical management and social care of Hepatitis C infected persons exist across Scotland. Only two NHS Boards in Scotland have a Managed Care Network ( MCN) for Hepatitis C and although Guidelines on the clinical management of persons with Hepatitis C exist, formal standards do not.
- among General Practitioners ( GPs) in their approach to identifying people at risk of Hepatitis C, and thus testing individuals for Hepatitis C, and referring people to Hepatitis C clinics; more than 80% don't ask their patients about risk factors and about 80% refer, to specialist centres, persons who have evidence of having spontaneously cleared their infection, 15
- among laboratories in the way they test for Hepatitis C and report results to
- among Hepatitis C clinics in the proportions of their (first appointment) referred patients who fail to attend (20-70%) and in the ways they follow-up such non attendees, 3,16
- among Hepatitis C clinics in the approaches they take to clinically manage their patients; approximately half prioritise patients for therapy and between 50-92% of new clinic attendees with chronic infection are not administered antiviral therapy within three years of first attendance for various reasons including patients dying, failing to re-attend, continuing to inject drugs and/or having a chaotic lifestyle, and having other medical/psychiatric contraindications. 3
- Each NHS Board will have, or be affiliated to, an MCN for Hepatitis C; this Network will comprise representatives of relevant specialists in healthcare and other stakeholder groups including those for the prison service, local authority, social work, the voluntary sector, mental health, addictions, and people living with and affected by Hepatitis C. The Network will be guided in its practice through the use of "Care" Guidelines, prepared by the Hepatitis C Action Plan's Testing, Treatment, Care and Support Working Group ( http://www.hepcscotland.co.uk/pdfs/guidelines-for-hepatitis-c-care-networks.pdf ) 17 and the Scottish Intercollegiate Guidelines Network ( SIGN) guidelines on the management of Hepatitis C ( Action 1). 6
- NHS Quality Improvement Scotland ( QIS) will develop Standards for Hepatitis C testing and the treatment, care and social support of persons with Hepatitis C infection
( Action 2).
These actions will ensure that approaches to the diagnosis and management of Hepatitis C infected persons throughout Scotland are highly effective and, where appropriate, consistent.
The training of the Hepatitis C workforce is ad hoc and often sub-standard with no alignment to quality frameworks.
- Training is delivered on an informal/ad hoc basis; no national or strategic approaches to training exist. 18
- Training is not aligned to a National Quality Framework and around one-third of training initiatives are never evaluated. 18
- Major gaps in training across the Hepatitis C workforce, excluding Hepatitis C specialist NHS staff, are evident. 18
- Few dedicated funding streams for Hepatitis C training of the workforce were identified; many training providers reported difficulties in identifying resources for training. 18
- A National Hepatitis C Learning and Workforce Development Framework will be developed ( Action 3).
- NHS Boards, working with their partners, will identify a Hepatitis C Workforce Development Lead, review the learning and development needs of the Hepatitis C Workforce, and implement a co-ordinated approach to Hepatitis C Workforce Development consistent with the National Hepatitis C Learning and Workforce Development Framework ( Action 4).
- Awareness-raising campaigns and communications initiatives will continue to be developed, implemented and evaluated to meet the information and education needs of a range of professional audiences (including those responsible for the delivery of prevention services) ( Action 5).
These actions will ensure that Scotland's Hepatitis C Workforce in its entirety is knowledgeable, skilled and confident.
Insufficient numbers of Hepatitis C infected persons, including prisoners, receive antiviral therapy.
- A total of 5% and 14%, respectively, of all (38,000) and diagnosed (14,500) chronically infected persons have been administered antiviral therapy. 3
- Around 450 persons/year are being initiated on therapy - a total which should be considered in the context of i) the figures above, ii) annual numbers of Hepatitis C-related liver deaths having doubled from 49 in 1999 to 95 in 2005, 19 and iii) an estimated 1,000-1,500 new infections occurring annually among IDUs. 3
- It is estimated that if 2,000 persons/year received antiviral therapy, over the next two decades 2,500 and 2,700 cases, respectively, of Hepatitis C-related cirrhosis without liver failure and cirrhosis with liver failure would be prevented. 3, 20
- Antiviral therapy for all infected individuals, excluding those who have progressed to very severe liver disease, has been deemed highly cost-effective by NICE and QIS. 5,6
- Of the 450 persons initiated on therapy during 2006, approximately 30 were prison inmates; 12 of the 30 received their treatment inside prison. 3
- In the mid 1990s, approximately 24% of Scotland's prison inmates were infected with Hepatitis C. 21
- Testing, Treatment, Care and Support services within each NHS Board will be developed to increase the number of persons undergoing therapy in Scotland from 450/year to 500 in 2008/09, 1,000 in 2009/10, 1,500 in 2010/11 and at least, 2,000/year thereafter ( Action 6).
- Service Level Agreements/Memoranda of Understanding between NHS Boards and the Scottish Prison Service ( SPS) to promote the treatment of Hepatitis C infected inmates in prisons will be developed in the context of the SPS Blood Borne Virus ( BBV) strategy ( Action 7).
These actions will increase the numbers of infected persons who clear their infection and thus reduce the numbers of infected persons who develop severe Hepatitis C-related liver disease.
In many parts of Scotland there are insufficient links between social care, addiction, mental health services and specialist services for Hepatitis C treatment. It is not possible to manage and treat Hepatitis C infected persons without considering their social care, and any drug/alcohol problem needs.
There is a paucity of local authority (social care) involvement with Hepatitis C infected persons across Scotland.
- More than half of Scotland's main Hepatitis C treatment centres have no outward referral links with mental health and addiction services and only one-quarter have outward referral links with social care services. 3, 16
- Focus Group sessions and interviews with service providers generated a clear and consistent message that strong links involving Hepatitis C treatment, mental health, addiction and social care services are vital in ensuring a successful passage for the infected individual through the pathway from diagnosis to antiviral treatment and after care. 3, 22
- For each NHS Board a formal plan, indicating how it has integrated or will integrate appropriate elements of Hepatitis C specialist treatment services into those for social care, mental health and addiction in local authority, voluntary sector, primary care and secondary care settings, will be developed and implemented ( Action 8).
- Each local authority will identify a strategic and operational Lead for Hepatitis C infection ( Action 9).
An integrated approach to the management of Hepatitis C infected persons involving Hepatitis C treatment, social care, and mental health/addiction will be fostered.
The majority of persons chronically infected with Hepatitis C remain undiagnosed and many of those diagnosed fail to reach and stay within specialist care services. There are widespread variations in testing practice in the community setting. The uptake of Hepatitis C testing among past and current IDUs is sub-optimal following test offer.
- Of an estimated 38,000 living persons, chronically infected with Hepatitis C, in Scotland, 14,500 have been diagnosed; the great majority of those undiagnosed are persons who have stopped injecting drugs but an appreciable minority (2,000-3,000) have never injected. 3
- Approximately 95% of GPs in Scotland did not diagnose a single case of Hepatitis C during 2006. 3
- Approximately 80% of GPs in Scotland do not systematically seek out risk factors for Hepatitis C among their practice populations. 3, 15
- Most needle/syringe exchange facilities in Scotland do not provide on-site Hepatitis C testing services. 23
- GPs and other professionals involved in the provision of Hepatitis C services agree that Hepatitis C testing should be promoted in the General Practice and other primary care settings, particularly those for IDUs. 15, 22
- Studies undertaken in Glasgow confirmed that a targeted approach to Hepatitis C testing in the General Practice setting - one which focuses on persons aged over 30 who have ever injected drugs - generates a high test uptake and yield of positivity among persons who have discontinued or are near to discontinuing drug injecting; such individuals are more likely than recent onset injectors to be ready and eligible to receive antiviral therapy. 24, 25
- GPs and other service providers indicated that difficulties in taking blood for Hepatitis C testing from persons who had injected drugs and the often long interval between blood taking and a result being available, were barriers to testing uptake and result disclosure; IDUs, not infrequently, fail to return to learn their Hepatitis C status. 3, 21
- Approximately 50% of newly diagnosed infected persons, referred to specialist clinics, fail to attend their appointment. 3, 16
- A review of evaluations of Hepatitis C public awareness-raising campaigns worldwide revealed that few had been undertaken; those that had been performed identified strengths and weaknesses - findings which should inform future Scottish campaigns. 26
- NHS Boards will work with Community Health Partnerships ( CHPs) to develop and implement a plan, incorporating innovative approaches, to improve Hepatitis C testing and referral activities by GPs and other community setting practitioners ( Action 10).
- An awareness-raising campaign, to promote Hepatitis C testing among those at risk of being infected, will be implemented and evaluated ( Action 11).
- A programme of work to evaluate different approaches to Hepatitis C testing/body fluid sampling ( e.g. near patient testing/use of saliva and dried blood spots) will be undertaken ( Action 12).
These actions will reduce the proportion of Hepatitis C infected individuals who are undiagnosed.