Testing, Treatment, Care and Support Draft Actions for Phase II

Issue: 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 for Hepatitis C. Evidence:  Variation between laboratories in HCV testing & reporting algorithms  Variation between HCV clinics in the follow-up of non-attenders: 20 – 70% non-attendance at first appointment  Variation between HCV clinics in the clinical management of patients: 8 – 50% of new attenders had began therapy within 3 years 5/12 clinics prioritise patients for therapy  Variation between HCV clinics in outward referral links: 5/12 clinics had links with addiction & mental health services 3/12 clinics had links with social care services

Proposed Action (Number 1): Each NHS Board will have, or be affiliated to, a Managed Care Network (MCN) for Hepatitis C; this Network should comprise representatives of all stakeholder groups including those for the prison service, local authority social care, the voluntary sector and addictions/mental health. The Network should 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 and SIGN Guidelines on Hepatitis C. Expected Outcome: MCNs for all NHS Boards established. Responsibility: Hepatitis C Executive Leads. National Performance Indicator: MCN Accreditation Stakeholder Conference Response: 96% agreed, 1% disagreed

Issue: Widespread variations in the approach to the clinical management and social care of Hepatitis C infected persons exist across Scotland. Although guidelines on the clinical management of persons with Hepatitis C exist, formal “standards” do not. Evidence (repeated):  Variation between laboratories in HCV testing & reporting algorithms  Variation between HCV clinics in the follow-up of non-attenders: 20 – 70% non-attendance at first appointment  Variation between HCV clinics in the clinical management of patients: 8 – 50% of new attenders had began therapy within 3 years 5/12 clinics prioritise patients for therapy  Variation between HCV clinics in outward referral links: 5/12 clinics had links with addiction & mental health services 3/12 clinics had links with social care services

Proposed Action (Number 2): QIS will develop standards for Hepatitis C testing and the treatment, care and social support of persons with Hepatitis C infection. Expected Outcome: QIS standards developed. Responsibility: NHS Quality Improvement Scotland. National Performance Indicator: None identified Stakeholder Conference Response: 88% agreed, 3% disagreed

Issue: Insufficient numbers of Hepatitis C infected persons receive antiviral therapy. Evidence:  14% of persons ever diagnosed with chronic HCV have had therapy  30% (range: 8 – 50%) of new attenders at HCV clinics had began therapy within 3 years of first attendance  During 2006, 4,000 people attended HCV clinics & only 450 were initiated on therapy  Increasing uptake of therapy to 2,000 persons per year ( ) will prevent 5,200 cirrhosis cases & 2,700 liver failures  Strong evidence to show that increasing uptake of HCV antiviral therapy in Scotland is cost-effective and an effective use of NHS resources: Cost / QALY  £6,300

Proposed Action (Number 4): Testing/Treatment/Care/Support services within each NHS Board will be developed to increase the numbers of persons undergoing therapy (currently 450/year). Expected Outcome: 500 treated in 08/09, 1000 in 09/10, 1500 in 10/11 and at least 2000/year thereafter. Responsibility: Hepatitis C Executive Leads. National Performance Indicator: Numbers of persons commenced on antiviral therapy. Proportion of those having received antiviral therapy who achieved a sustained viral response. Stakeholder Conference Response: 94% agreed, 2% disagreed

Issue: Very few inmates of Scotland’s prisons are assessed for and, where appropriate, administered antiviral therapy despite an estimated 15% of Scotland’s prison population having been infected with Hepatitis C. Evidence:  During 2006, 1% of all HCV antibody tests and 2% of new HCV positive diagnoses were performed in prisons  Of the 450 patients initiated on therapy during 2006, approx. 30 were prisoners and only 12 of these received therapy in the prison setting

Proposed Action (Number 5): Service Level Agreements/Memorandums of Understanding, between NHS Boards and the SPS, to promote the management of Hepatitis C infected individuals in medium and long-stay prisons, will be drawn up. Expected Outcome: The establishment of SLAs/MoU between SPS and NHS Boards. Responsibility: SPS, Hepatitis C Executive Leads and MCNs (or equivalent). National Performance Indicator: Numbers of persons commenced on antiviral therapy (Prisons only). Proportion of those having received antiviral therapy who achieved a sustained viral response. (Prisons only) Stakeholder Conference Response: 83% agreed, 4% disagreed

Issue: In many parts of Scotland there are insufficient links between 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 drug and alcohol problem needs. Evidence:  5/12 HCV clinics reported outward referral links with addiction & mental health services  Consensus in focus groups that: Providing clients with easy access to support services would facilitate their successful progression along the patient pathway As a minimum, there should be good links and communication between services and clear access routes for patients

Proposed Action (Number 6): Each NHS Board will develop a formal plan indicating how they have integrated/will integrate appropriate elements of Hepatitis C specialist treatment and care services into those for addiction/mental health. Expected Outcome: Development of plan. Responsibility: Hepatitis C Executive Leads and MCNs (or equivalent). National Performance Indicator: None identified. Stakeholder Conference Response: 96% agreed, 1% disagreed

Issue: There is a paucity of local authority (social care) involvement with Hepatitis C infected persons across Scotland. Evidence:  3/12 HCV clinics reported outward referral links with social care services  Consensus in focus groups that: Social care was a service that was vital for many patients but one which was rarely integrated Providing clients with easy access to support services would facilitate their successful progression along the patient pathway As a minimum, there should be good links and communication between services and clear access routes for patients

Proposed Action (Number 7): Each Local Authority will identify a lead for Hepatitis C infection. Expected Outcome : Local Authority Leads established. Responsibility: Directors of Social Work. National Performance Indicator: None Identified. Stakeholder Conference Response: 81% agreed, 6% disagreed

Issue: 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 general practitioner practice and intensity of effort regarding the above. Evidence:  37,500 persons with chronic HCV living in Scotland, of whom 36% diagnosed  In 2006, only 4% of all GPs in Scotland newly diagnosed a person with HCV  From the GP survey, most practices indicated that GPs should undertake the pre- & post- test discussion, while practice nurses should undertake HCV testing  Only 18% practices actively seek out risk factors to offer an HCV test  Evaluations show that a targeted approach to HCV screening in the primary care setting – one which focuses on ever-IDUs aged over 30 years – generates a high yield of HCV positivity

Proposed Action (Number 8): Hepatitis C testing and referral activities by general practitioners will be incorporated within the GP Enhanced Payments scheme. Expected Outcome: GP Enhanced Payments Scheme will be changed to reflect the inclusion of Hepatitis C testing/referral. Responsibility: Scottish Government. National Performance Indicator: Numbers of persons tested, Hepatitis C diagnosed and referred to specialist care services. Stakeholder Conference Response: 13% agreed, 58% disagreed

Issue: The uptake of Hepatitis C testing among past/current IDUs is sub-optimal following test offer. Evidence:  Consensus in focus groups that: Poor venous access was common among individuals at high risk of HCV infection The need for venepuncture was a barrier to HCV testing A shortfall in staff trained to take blood for HCV testing Use of oral fluid testing could be explored to overcome this barrier

Proposed Action (Number 10): A programme of work to evaluate different approaches to Hepatitis C testing/ Hepatitis C test sampling (e.g. near patient testing/use of saliva and dried blood spots) will be undertaken. Expected Outcome: Programme of Hepatitis C testing/sampling work undertaken. Responsibility: Hepatitis C Specialist Laboratories, HPS. National Performance Indicator: None identified. Stakeholder Conference Response: 92% agreed, 1% disagreed

Prevention Draft Actions for Phase II

Issue: Widespread variations in the provision and uptake of injection equipment exist throughout Scotland - NHS Boards do not have formal networks to facilitate the prevention of Hepatitis C. Evidence:  Numbers of N/S per IDU per year per NHS Boards ranges from 57 to 439  Variation in number/type of injecting paraphernalia distributed by NHS Boards  Inconsistent limits on numbers of N/S distributed per NHS Board, no relation to Lord Advocate’s Guidelines

Proposed Action (Number 11): Each NHS Board will have, or be affiliated to, a Hepatitis C Prevention Network comprising representatives of all stakeholder sectors, including the Scottish Prison Service and appropriate voluntary organisations. Guidance regarding Network membership and Terms of Reference will be established. Expected Outcome: Hepatitis C Prevention Networks. Responsibility: Hepatitis C Executive Leads. National Performance Indicator: None identified. Stakeholder Conference Response: 45% agreed, 27% disagreed

Issue: Widespread variations in the provision and uptake of injection equipment exist throughout Scotland - Guidelines/standards for services providing injection equipment for IDUs do not exist. Evidence:  Only 1 needle exchange in Scotland open 24 hours  Only one third open in evenings  Less than a quarter open at weekends  Less accessibility in remote/rural areas  In most areas, non-pharmacy exchanges distribute larger number of N/S

Proposed Action (Number 12): Guidelines/standards for services providing injection equipment to IDUs will be developed. Expected Outcome : Guidelines/standards developed. Responsibility: Scottish Government, Hepatitis C Prevention Networks (or equivalent), Hepatitis C Executive Leads. National Performance Indicator: None identified Stakeholder Conference Response: 75% agreed, 6% disagreed

Issue: Widespread variations in the provision and uptake of injection equipment exist throughout Scotland - The re-use/sharing of injection equipment among IDUs is still highly prevalent and Hepatitis C transmission among IDUs is still common in many parts of Scotland. Evidence:  Approx one third IDUs report sharing N/S  Larger proportion report sharing other paraphernalia  Levels of sharing consistent for >5 years  Incidence in Glasgow 29 per 100 person years in and  Approx 1500 new infections among IDUs per year in Scotland

Proposed Action (Number 13): Services providing injection equipment will be improved to increase the uptake of injection equipment, particularly in areas where it is relatively low. A robust study evaluating the effectiveness of improving such services on Hepatitis C transmission among IDUs will be undertaken, as few such investigations have been performed to date. Expected Outcome: Increased uptake of injection equipment towards the goal of one set of injection equipment per injecting episode (targets to be set following acquisition of baseline data). Responsibility: Hepatitis C Prevention Networks (or equivalent), Hepatitis C Executive Leads and Drug Action Teams (DATs). National Performance Indicator: Proportion of injection episodes undertaken with sterile injection equipment (needles and syringes, and other injecting paraphernalia); baseline data will be available in 2008 and, thereafter, targets will be set) Proportion of IDUs sharing injection equipment during a specified period Hepatitis C prevalence/incidence among recent onset injectors. Stakeholder Conference Response: 67% agreed, 16% disagreed

Issue: Widespread variations in the provision and uptake of injection equipment exist throughout Scotland - There is insufficient 24- hour access to injection equipment for IDUs. Evidence:  Only 1 needle exchange in Scotland open 24 hours

Proposed Action (Number 15): An initiative to provide injection equipment through vending machines will be piloted. Expected Outcome Implementation and evaluation of pilot. Responsibility: Hepatitis C Prevention Networks, Hepatitis C Executive Leads, DATs. National Performance Indicator: None identified. Stakeholder Conference Response: 41% agreed, 39% disagreed

Issue: Widespread variations in the provision and uptake of injection equipment exist throughout Scotland - There is no access to sterile injection equipment for IDUs who are prison inmates and who continue to inject drugs in that environment. Evidence:  More than half of incarcerated IDUs report injecting in prison  Sharing more likely because of lack of sterile injecting equipment  Shotts prison study – 12 HCV infections per 100 person years of incarceration  Evidence of effectiveness of prison N/E from other countries

Proposed Action (Number 16): An in-prison needle/syringe exchange initiative will be piloted. Expected Outcome: The implementation and evaluation of the initiative. Responsibility: Scottish Prison Service National Performance Indicator: None identified Stakeholder Conference Response: 72% agreed, 20% disagreed

Education, Training and Awareness Draft Actions for Phase II

Issue: Widespread variations in the approach to the clinical management and social care of Hepatitis C infected persons exist across Scotland - The training of the Hepatitis C workforce is ad hoc and often substandard with no alignment to quality frameworks. Evidence:  Training delivered on an informal and ad hoc basis, often as part of broader blood borne virus training and with no funding attached to it.  No national or regional strategic approaches to HCV training identified.  Training delivered by a range of training providers including STRADA, HPS, UK Hepatitis C Resource Centre. Training providers report capacity issues for training across the whole workforce.  No evidence of training being aligned to national quality frameworks.  30% of training never evaluated.  Major gaps identified across the whole existing HCV workforce (exception specialist HCV NHS staff).

Proposed Action (Number 3): A national workforce development strategy will be established. Each NHS Board will appoint a Hepatitis C workforce development co-ordinator to implement the strategy locally. Expected Outcome: A more knowledgeable, skilled and confident HCV workforce. A national HCV workforce development ‘strategy’ implemented locally. NHS Board workforce development co-ordinators appointed. Responsibility: NHS Education for Scotland, UK Hepatitis C Resource Centre and STRADA. NHS Board HCV Executive Leads. National Performance Indicator: Number of training courses delivered to local HCV workforce and numbers trained at local level. Evidence of HCV teaching at undergraduate level. Stakeholder Conference Response: 42% agreed, 36% disagreed

Issue: 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 general practitioner practice and intensity of effort regarding the above. Evidence:  37,500 persons with chronic HCV living in Scotland, of whom 36% diagnosed  In 2006, only 4% of all GPs in Scotland newly diagnosed a person with HCV  From the GP survey, most practices indicated that GPs should undertake the pre- & post- test discussion, while practice nurses should undertake HCV testing  Only 18% practices actively seek out risk factors to offer an HCV test  Evaluations show that a targeted approach to HCV screening in the primary care setting – one which focuses on ever-IDUs aged over 30 years – generates a high yield of HCV positivity

Proposed Action (Number 9): Public awareness campaigns, to promote Hepatitis C testing among current/past IDUs and others with a possibility of being infected, will be run. Expected Outcome: Increased numbers presenting for testing. Public awareness campaigns. Responsibility: Scottish Government. National Performance Indicator: Increased public awareness levels of HCV. Numbers of persons tested. Number of cases of hepatitis C diagnosed and referred to specialist care services. Stakeholder Conference Response: 98% agreed, 1% disagreed

Issue: Widespread variations in the provision and uptake of injection equipment exist throughout Scotland - The re-use/sharing of injection equipment among IDUs is still highly prevalent and Hepatitis C transmission among IDUs is still common in many parts of Scotland. Evidence:  Approx one third IDUs report sharing N/S  Larger proportion report sharing other paraphernalia  Levels of sharing consistent for >5 years  Incidence in Glasgow 29 per 100 person years in and  Approx 1500 new infections among IDUs per year in Scotland

Proposed Action (Number 14): An education campaign aimed at IDUs and those at risk of starting to inject drugs will be undertaken. Expected Outcome: Increased awareness of Hepatitis C among IDUs and those at risk of injecting. Reduction in sharing of injecting equipment among IDUs. An education ‘campaign’ or more targeted/focused educational initiatives e.g. peer-led. Responsibility: Scottish Government. Local ADATs and Scottish Drugs Forum. National Performance Indicator: Reduction in self-reported sharing of injecting equipment. Increased use of needle exchange provision. Stakeholder Conference Response: 87% agreed, 6% disagreed.

Issue: Persons in school and further education settings receive little, if any, education about Hepatitis C. Evidence:  Majority of secondary schools delivering little or no teaching on hepatitis C either within their drug or sex education programmes. Schools who did include messages on hepatitis C tend to link this into their sex education programme.  Only half of the secondary schools provide some input on injecting drug use but very few made explicit links to the risk of contracting hepatitis C.  Within primary schools, with the exception of one school, none were aware of any references to hepatitis C within their health curriculum.  Within Further Education colleges there were no initiatives relating to the provision of information on hepatitis C.  Within secondary schools teaching staff feel that it would be appropriate for information on hepatitis C to be incorporated into the curriculum.  Factual information and supporting materials to support teaching would be appreciated. This should include suggestions on what should be delivered, when and how.

Proposed Action (Number 17): A strategy to raise Hepatitis C awareness and provide materials for Hepatitis C teaching in the primary, secondary and further education settings will be generated; Hepatitis C education toolkits will be developed. Expected Outcome: Guidance on Hepatitis C teaching for schools and further education developed. Hepatitis C education toolkits developed. Responsibility: Scottish Government Education Department and Learning and Teaching Scotland. National Performance Indicator: Evidence of HCV teaching within school curriculum. Evidence of informal approaches to raising awareness of HCV in further education settings. Improved knowledge of HCV among young people/young adults. Stakeholder Conference Response: 86% agreed, 7% disagreed