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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”



Increasing Awareness about Hepatitis C

http://www.scotland.gov.uk/Publications/2006/06/20091252/0

Executive Summary

In June 2005, the Scottish Executive published its Action Plan for Hepatitis C. The document, entitled, Hepatitis C. Proposed Action Plan in Scotland, was circulated to a wide range of stakeholders throughout Scotland, and comments were invited over a period of 12 weeks. The Action Plan's main objectives - as set out in the Introduction to the document - were:

1. to reduce the transmission of HCV with the main focus in terms of prevention being on current injecting drug users

2. to diagnose infected persons, particularly those who are most in need of therapy, and

3. to provide the optimal care and support for HCV diagnosed persons who are able to benefit.

There were separate sections in the document on Prevention (Section 1), High quality health and social care services (Section 2), Increasing awareness about Hepatitis C (Section 3) and Co-ordination, monitoring and research (Section 4).

The consultation attracted 72 responses. The majority of these were submitted on behalf of organisations or groups, and included agencies delivering front-line services and groups involved in the planning and commissioning of services. Approximately half of the responses came from NHS organisations. Most displayed an in-depth understanding of Hepatitis C.

Respondents welcomed the publication of a Hepatitis C Action Plan for Scotland, and expressed the view that an Action Plan was urgently needed. In addition, respondents were largely in agreement with the aims of the Action Plan. However, significant concerns were voiced about a number of issues. Some of these relate to specific actions, or what respondents felt were omissions in the Action Plan. There were also more general comments, which do not relate to any particular section of the Action Plan, but which cut across all sections.

General concerns

  • The lack of clarity and detail for planning
  • The lack of SMART objectives ( SMART=specific, measurable, achievable, realistic / relevant, and timed) and stated period of the action plan (2005-2007)
  • The skewed focus on NHS services
  • The need to base the Action Plan on the best available evidence
  • The lack of funding attached to the Action Plan.

The latter point was raised by nearly every respondent. Respondents expressed disappointment and concern that there was no new funding attached to the Action Plan, and argued that without substantial new funding, it would be impossible to achieve the Plan's aims. The point was made repeatedly that any attempts to identify those whose infections were currently undiagnosed would be counter-productive without additional funding for testing and treatment services.

Prevention

Section 1 of the Action Plan covered actions on Prevention. Respondents agreed that action to prevent transmission of the Hepatitis C virus was crucial, and for the most part, also agreed with the focus on prevention among injecting drug users. However, respondents also suggested some significant changes. In particular, it was felt that the Action Plan had omitted several crucial issues, including: (i) action to improve the availability and accessibility of treatment for drug users; (ii) action to improve the quality and accountability of services; (iii) action to develop more effective ways of engaging with drug users and (iv) action to prevent drug use among young people.

Respondents agreed there should be action to improve education and awareness among injectors. However, there was a feeling that action in this area needed to go beyond the Scottish Prison Service (see Action 1.1.e), and there was a request for clarity about precisely who - apart from the Prison Service - should be responsible for this. There was also a request for detail about the messages and approaches that should be advocated. Respondents called for further work to develop educational interventions for injectors that went beyond the simple distribution of leaflets, which were not seen to be effective. Alternatives could include peer-led interventions, and the use of video and internet.

While education and awareness raising among injectors was seen to be important, respondents felt that the main priority in terms of prevention should be on reducing the re-using and sharing of injecting equipment. However, respondents pointed to variation and inequity in existing service provision across Scotland and called for action to establish standards for needle exchange services, as well as action to improve the accountability of NHS Boards in relation to the planning and delivery of these services. The view was expressed that the distribution of sterile injecting paraphernalia (swabs, citric acid, filters, etc.) should be routine in all needle exchange services.

In general, respondents were in favour of action to prevent initiation into injecting. However, there was also a feeling that it may be difficult to measure the effectiveness of such interventions. Respondents argued that the focus should rather be in improving education and advice to young people so they can make more informed choices.

High quality health and social care services

Section 2 of the draft Action Plan highlighted the need for standardisation in the management of Hepatitis C across Scotland and for promoting greater integration between primary and secondary care. Four actions were proposed in this Section. Although many respondents agreed with the general aim of these actions, they also felt that this section of the Action Plan needed much more development. Respondents argued that the priority for this section should be to: (a) increase the number of people being tested and treated; and (b) ensure equity of access to testing and treatment.

However, there was a feeling, again, that the actions described in this section were vague and lacking in detail. Respondents also felt this section was too narrowly focussed on NHS services, and had neglected the crucial role that social work, voluntary sector agencies and even local support groups have in providing care and support to individuals with Hepatitis C. Specific concerns were voiced about the lack of any action to promote testing or to develop more accessible community-based treatment and care services.

In general, respondents were in favour of the proposed action to establish Managed Clinical Networks ( MCNs), but felt that the term "Managed Clinical Network" was unhelpful and inappropriate. It was suggested that Managed Service Networks should be developed instead.

Respondents were also in favour of action to develop a SIGN Guideline, as it was felt it would provide evidence of best practice for treatment and give professional staff a universal standard to follow. However, concern was expressed that, while the Action Plan advocated the development of a such a Guideline, it appeared not to acknowledge the significant resources that would be required to implement it.

Respondents were in favour of a multi-agency, partnership approach to the treatment of Hepatitis C, and saw Community Health Partnerships ( CHPs) as having a role in this. However, there was a feeling that it would take some time for CHPs to become fully established, and therefore it might be unrealistic to expect CHPs to provide short-term solutions to the complex issues associated with Hepatitis C management.

Respondents expressed some reservations about the action upon NHS Boards to make better use of Primary Care contracting in the treatment and support of individuals with Hepatitis C. Some asked for clarity about precisely what was meant by this action. However, others expressed a concern that primary care is overstretched already and highlighted the fact that many NHS Boards are struggling to find GPs in their area who are willing to provide enhanced services to drug users.

Increasing awareness about Hepatitis C

Section 3 of the Action Plan proposed five actions under the heading of awareness-raising. Each had the aim of raising awareness of Hepatitis C or improving training among a different target group. In general, respondents were fully in support of the need to raise awareness of Hepatitis C among a range of groups. Many suggested additional groups to target.

However, once again, respondents argued that the aim of awareness-raising should be made explicit, and that the Action Plan should be more specific about what would achieved through certain actions and how. This comment was made especially in relation to the proposal to roll out a "low-key information campaign through the press." With few exceptions respondents disagreed strongly with this proposal, and instead advocated a high-profile, on-going campaign. Respondents felt the primary aim of awareness-raising should be: (1) to identify people who are at risk; and (2) to get them to come forward for testing.

Respondents agreed with the proposed action to provide better, more effective information to those who have been diagnosed with Hepatitis C, but expressed reservations about the proposal to establish a system whereby a positive diagnosis of Hepatitis C triggers information to both the individual and his / her GP. Concerns were expressed about patient confidentiality where an individual had sought testing through a harm reduction clinic, rather than through their GP, and there was a feeling that such a system could actually deter people from coming forward for treatment.

Respondents agreed that action was needed to target the general public to identify those who have Hepatitis C but who are undiagnosed, and many highlighted the significant role the media could play in this. Respondents felt it was important, in relation to the media, to take into account lessons learned from HIV/ AIDS campaigns. Respondents were also in favour of the proposal to include information about Hepatitis C in school-based health education classes, and felt that educational initiatives and programmes for excluded and vulnerable young people should also be targeted.

Education, training and awareness-raising among professionals was considered to be a very high priority for action. Respondents made the point that action in this area would form the basis for the success or failure of all other actions and interventions. In general, specialist harm reduction staff were seen to be very well-informed about Hepatitis C, although it was also suggested that there would be enormous benefit from introducing a standard programme of training for all needle exchange staff.

However, the greatest need for training and education was seen to be in relation to non-harm reduction staff. Respondents felt that all staff who may come in contact with drug users should have at least a basic minimum level of knowledge about Hepatitis C, and that beyond this, training should be tailored to individual needs. It was suggested that education and training in relation to Hepatitis C should be accredited, developed and delivered on a multi-disciplinary / multi-agency basis and should involve input from front-line staff and service users.

Co-ordination, monitoring and research

Section 4 of the Action Plan covered actions in relation to co-ordination, monitoring and research. Respondents agreed strongly with the view that a nationally co-ordinated approach to HCV prevention and care was needed and felt it would reduce duplication of efforts across agencies.

There was also near unanimous support for the establishment of an Action Plan Co-ordinating Group ( APCG), but respondents wanted clarity about the role of the group, its membership and its reporting and accountability arrangements. The production of a Hepatitis C Annual Report was also seen to be positive, and one means of improving awareness of Hepatitis C among professionals.

Very few comments were received on the proposal to establish a BBV Co-ordinator at Director level within each NHS Board. In general, comments were positive, but further clarification was requested about the remit of these posts. It should also be mentioned that a few respondents questioned the need for such a senior-level post, given the low prevalence of Hepatitis C in their Health Board area.

Respondents saw the area of monitoring as very important, and suggested that further detail and a greater emphasis on this topic in the Action Plan would be welcome. Respondents were largely in favour of the proposed actions. Surveillance, in particular, was seen to be crucial for informing service planning and delivery, and respondents felt that any surveillance initiatives should be specifically geared to that purpose. In relation to this, respondents were also strongly in favour of action to establish and maintain a national database of the treatment and care characteristics of people entering specialist Hepatitis C services, and argued that anonymised data from such a database should be freely available to professionals working across all sectors. The draft Action Plan proposed to carry out an inventory of prevention activity. While respondents welcomed this, they also wanted to see action to monitor treatment provision.

Again, respondents were very much in favour of action to undertake research as part of the Action Plan, and suggested that the highest priority for research is in the area of prevention. Respondents wanted evaluations of the effectiveness and cost-effectiveness of prevention initiatives, especially in relation to the distribution of paraphernalia. Secondly, respondents wanted to see research on screening and testing - what are the best methods to identify former drug users and encourage them to come forward for testing? Third, the area of treatment and care was seen to be an important topic for research. Respondents particularly wanted to see evaluations of new community-based models of care.

Conclusion

Respondents were very much in support of the general aims of the draft Action Plan, but felt that the Action Plan lacked detail for planning. Respondents wanted to see targets and SMART objectives.

The mere publication of an Action Plan on Hepatitis C indicates a clear commitment by the Scottish Executive to tackle this problem. However, this commitment is undermined by the lack of funding attached to the Action Plan. The Scottish Executive will need to consider carefully what specific actions can be undertaken in the next few years to address the Hepatitis C epidemic in the absence of additional resources. To some extent, the creation of SMART objectives will, in itself, clarify what can and cannot be achieved.

 

Introduction

http://www.scotland.gov.uk/Publications/2006/06/20091252/2

In June 2005, the Scottish Executive published its Action Plan for Hepatitis C. The document, entitled, Hepatitis C. Proposed Action Plan in Scotland, was circulated to a wide range of stakeholders throughout Scotland, and comments were invited over a period of 12 weeks.

The proposed Action Plan was designed to promote further implementation of the Scottish Needs Assessment Programme ( SNAP) recommendations and the key messages in the Consensus Statement which emerged from the conference organised by the Royal College of Physicians of Edinburgh in April 2004. The proposed Action Plan also drew upon evidence from research studies published by the Effective Interventions Unit in the Scottish Executive Health Department.

The Plan was developed with input from key stakeholders. In particular, in February 2005, the Scottish Executive had invited a wide range of stakeholders to set out their top three priorities for action on Hepatitis C. The results of this previous "consultation" were published as an annex (Annex B) to the proposed Action Plan, and were used to inform specific actions within it.

The Action Plan's main objectives - as set out in the Introduction to the document - were:

1. to reduce the transmission of HCV with the main focus in terms of prevention being on current injecting drug users

2. to diagnose infected persons, particularly those who are most in need of therapy, and

3. to provide the optimal care and support for HCV diagnosed persons who are able to benefit.

The Plan also included action to raise awareness among a number of target audiences, to improve co-ordination and undertake monitoring and research.

The proposed Action Plan was sent to over 100 organisations and other bodies, representing a wide range of interests in the health and social care sectors. Specific questions were asked in relation to each section of the Plan, and respondents were invited to make additional comments as well.

The Scottish Executive commissioned Griesbach & Associates to undertake an analysis of the responses to the consultation. This report presents the results of that analysis. Given the large number of responses received, and the level of detail in the responses, this report focuses on summarising only the main points raised by respondents. However, detailed responses have been collated and made available to the Scottish Executive in a separate document, which is available to the public upon request.

1.1 Overview of report

Detailed comments were received on every section of the proposed Action Plan. There were also a number of more general comments which do not relate to any particular section, but rather which cut across all sections. A summary of these comments will be presented in the following sections:

Section 3: General comments

Section 4: Prevention

Section 5: High-quality Health and Social Care Services

Section 6: Increasing Awareness about Hepatitis C

Section 7: Co-ordination, Monitoring and Research

Section 8 will present some conclusions based on the findings of the consultation. First, however, the report will provide a brief description of respondents to the consultation in Section 2.

 

Consultation respondents

The consultation attracted 72 responses from 75 individuals. (Three responses were signed by two people.) The majority of responses were submitted on behalf of organisations or groups, and included agencies delivering front-line services and groups involved in the planning and commissioning of services. Most of the responses in the consultation displayed considerable awareness and knowledge of Hepatitis C. Table 1 below summarises information on the affiliation of respondents.

Table 1: Affiliation of respondents

Affiliation

Number of responses received

NHS (including the Royal Colleges)

41

Multi-agency groups or partnerships

13

Voluntary sector

9

Local authority

3

University / academic

3

Service user representatives

2

Central government

1

Unknown

1

It is worth mentioning that:

  • Respondents included five doctors working in general practice. In most cases, these doctors had experience of providing enhanced services to injecting drug users.
  • Responses were submitted on behalf of a number of the Royal Colleges, including: the Royal College of Paediatrics and Child Health (Scotland); Royal College of Nursing (Scotland); Royal College of Midwives UK Board for Scotland; Royal College of Surgeons (Edinburgh); and the Royal College of Physicians of Edinburgh. A committee within the Faculty of Public Health also submitted a response.
  • Multi-agency groups or partnerships included Community Health Partnerships, Drug Action Teams, addiction teams and networks, and local area blood-borne virus fora and networks.
  • Voluntary sector respondents included agencies which were involved in providing support services to individuals affected by Hepatitis C, HIV or addiction.
  • Two service users responded, including one who was representing the interests of a drug service users group in a large Scottish city.
  • The one central government response was from a Parliamentary Working Group which represented a broad range of interests.
  • There were only three anonymous submissions. However, in two cases, the organisational home of the respondent could be inferred (as NHS) from the comments. There was only one response where the respondent's affiliation was unknown.

A full list of respondents is available from the Scottish Executive.

 


General comments

This section presents a summary of the general comments made on the proposed Action Plan. These comments do not relate to any one section of the Plan, but rather they cut across all sections. Among them, several major themes were identified.

Respondents to the consultation welcomed the publication of a Hepatitis C Action Plan for Scotland, and expressed the view that an Action Plan was urgently needed. In addition, respondents were largely in agreement with the three main objectives of the Action Plan - namely, prevention, diagnosis and treatment. Awareness-raising, co-ordination, monitoring and research were also seen as priorities. However, respondents had significant concerns about a number of issues, including:

  • The lack of clarity and detail for planning in relation to many of the proposed actions
  • The lack of SMART objectives in the Action Plan ( SMART= specific, measurable, achievable, realistic/relevant and timed) and the stated period of the Plan
  • The skewed focus on NHS services and the exclusion of social care and voluntary sector services
  • The need to base the Action Plan on the best available evidence of what works
  • The lack of funding attached to the Action Plan (including comments on the current allocation of blood-borne virus prevention monies)

These comments are summarised below.

3.1 Lack of clarity and detail for planning

Respondents consistently commented on the lack of detail and clarity regarding the nature of many of the proposed actions - particularly in relation to those listed in Section 2 (High Quality Health and Social Care), but to a lesser extent in relation to all other actions as well. Questions were asked about the meaning of a number of actions, and concerns were expressed about the "vagueness" of others. Respondents argued that the statements made in the draft Action Plan did not provide sufficient detail for planning action at a local level. To some extent, the lack of clarity in the Action Plan is related to a problem with a lack of SMART objectives.

3.2 Lack of SMART objectives and stated period of Action Plan

A number of respondents commented that it was helpful that the proposed Action Plan included details of who should take responsibility for particular actions. However, in general, disappointment was expressed about the lack of targets and explicit, time-limited objectives in the Plan. One respondent suggested that the language in the Action Plan was more the language of strategies ( i.e., "will build on", "develop", "improve"). This individual, and others, felt that the Action Plan had failed to set out explicit actions that will be undertaken.

Respondents expected the Action Plan to identify SMART objectives (specific, measurable, achievable, realistic / relevant and timed), and to be clear about how progress and outcomes will be measured. SMART objectives were seen to be crucial to prevent differing interpretations and to avoid inconsistency in implementation of the Action Plan across Scotland.

The stated period of the Action Plan was 2005-2007. While a few respondents suggested optimistically that the short timescale might focus attention, in general, respondents argued that the period of the Action Plan should be changed to 2006-2008 or 2009. The reason for this was simply that respondents felt it was unlikely that the Action Plan could be launched much before 2006.

3.3 Skewed focus on NHS services

Respondents felt that the draft Plan had a skewed focus on action by NHS services, and that there was very little mention of the role that social care and voluntary sector services could take. This comment was raised specifically in relation to Section 2 of the Action Plan on "High quality health and social care services", but was also made as a more general point.

3.4 Use of evidence base

Respondents clearly expected actions within the Action Plan to be based on solid evidence - either evidence of need, or evidence or effectiveness. And while several welcomed references to proven interventions such as "Break the Cycle" and the video research undertaken by Avril Taylor and colleagues at the University of Paisley, others expressed concern about the lack of evidence in relation to a number of proposed actions. This remark was made specifically in relation to actions in Section 2 (High-quality Health and Social Care Services), and the planned "low key awareness campaign." However, the demand for evidence went beyond these specific actions. Respondents wanted the Action Plan to make reference to interventions which had been shown to be successful in other places. Several called for a review of the existing evidence, and suggested that the Action Plan should be based on the best information available.

3.5 Funding

Nearly every respondent commented on the need for substantial new funding to address the Hepatitis C epidemic. Respondents expressed disappointment and concern that there were no new resources available, and argued that without new funding, it would be impossible to achieve the aims of the Action Plan. A number of respondents expressed what can only be described as cynicism and scepticism about the purpose of publishing an action plan without new funding attached.

Respondents saw the need for additional funding in relation to nearly every aspect of the Action Plan. But particular concerns were voiced about the existing lack of accessible testing and treatment services and the under-funding of needle exchange and drug treatment services in some areas, as well as the need for enhanced laboratory facilities. Respondents argued that any attempt to identify the large numbers of individuals who are infected with the Hepatitis C, but who are currently undiagnosed, must be supported with substantial additional resources for testing and treatment.

Blood-borne virus ( BBV) prevention funding

Respondents welcomed a review of the formula which was used to allocate HIV prevention funding to NHS Boards across Scotland. However, it is clear from some comments that not all respondents were aware that a revision of this formula had recently taken place, and that the new formula now takes into account Hepatitis C prevalence in NHS Boards. 1 Those who were aware of the change were, in general, concerned about its impact. Respondents pointed out that, "The revised formula assumes that there is currently an adequate national spend on BBVs." Respondents argued that this was not the case, and therefore, the implementation of a new formula has simply redistributed the national under-spend and resulted in some NHS Boards effectively having year-on-year budget cuts ( i.e., static funding with no inflationary uplifts). One individual highlighted that demand on BBV prevention services was increasing, and a simple redistribution of funds did not take this into account. Another individual expressed the certainty that local HIV and HCV services in his area would have to be cut back as a result of the new allocations.

Respondents felt that the formula for allocating BBV prevention funding should take into account severalimportant factors which, it was suggested, it currently does not. These include prevalence of injecting drug use; social deprivation; and the Hepatitis C workload associated with prison populations. Regarding the latter point, one respondent highlighted the fact that Hepatitis C prevalence is reported by NHS Board of residence. NHS Boards, such as Forth Valley, which have responsibility for large "national" prison populations, are therefore not receiving adequate funding to support activities among these populations. Respondents also voiced concerns about basing the new formula strictly on Hepatitis C prevalence because of the current lack of accurate prevalence data.

Respondents felt that the allocation formula should be regularly reviewed, and one individual called for the Action Plan to include a formal evaluation of the impact of the revised formula.

3.6 Other general comments

A number of comments were made about the previous "consultation" exercise, in which the Scottish Executive had asked key stakeholders to identify their top three priorities for action on Hepatitis C. The findings from this exercise had been attached to the draft Action Plan as Annex B. There was a feeling among a number of respondents that this previous consultation had formed a valuable contribution to the Action Plan, but expressed the view that many of the issues identified in Annex B had not been addressed in the Plan itself. In particular, respondents pointed out that there was no mention of:

  • the contribution that nurses can make in prevention, education and management of Hepatitis C infection
  • the need for enhanced laboratory services
  • improving access to testing facilities and treatment services
  • increasing the numbers coming forward for testing
  • the role that community pharmacists can play in education and awareness-raising
  • interventions among vulnerable young people.

 

4. Prevention

Section 1: Prevention

Issue

The main known route of transmission for HCV in Scotland is through injecting drug use because of risk behaviours such as sharing and re-using of syringes and other injecting equipment. Prevention efforts need to be intensified to reduce the spread of HCV in at-risk populations.

Actions

1. Reducing transmission among current injecting drug users

a) SEHD and the UK Health Departments are currently revising at present the clinical guidelines on "Drug Misuse and Dependence - Guidelines on Clinical Management". Thereafter, Clinical Governance leads in NHS Boards supported by Prescribing Advisors should ensure that prescribing practice should be brought in line with current evidence and the new guidelines.

b) The Royal College of General Practitioners ( RCGP) will deliver improved training and education for GPs, specialists and other health professionals involved in prescribing through the extension of the provision of RCGP Certificates in the Management of Drugs Misuse being extended to Scotland, from 2005/06.

c) The RCGP will implement their guidance for GPs on the vaccination of close family contacts etc of drug injectors against Hepatitis A and B.

d) SEHD with partners/Pharmaceutical Committee will take forward the recommendations set out in the strategy for pharmacist's document "Prevention and Treatment of Substance Misuse". Will shortly be available at www.show.scot.nhs.uk .

e) The SPS and other organisations that have contact with IDUs will work to improve education and awareness raising among this population .

f) NHS Boards and SPS will develop and implement interventions to reduce re-using and sharing of needles, syringes and injecting paraphernalia and to promote safer injection. These interventions could include: more outreach and mobile injecting equipment exchanges; distributing a wider range of paraphernalia, not only needles and syringes at needle exchanges; and labelling or colour coding of equipment to help drug users identify their own.

g) SEHD will undertake a national needle exchange survey together with colleagues in England, Wales and Northern Ireland. The survey will map needle exchange facilities across the UK, describe current service provision, identify the gaps in service provision, and explore what is and is not working well in this area. A report of the survey will be available by Autumn 2005.

2. Preventing initiation into injecting

a) Reduce initiation into injecting - NHS Boards and SPS will develop an intervention to give current injectors the skills to resist requests to initiate other drug users into injecting (based on the Break the Cycle intervention.) Further details are available at http://www.exchangesupplies.org/campaignmaterials/btcbrief.html .

b) Education and awareness raising among potential injectors, particularly in the SPS.

3. Raising awareness among Staff and Organisations working with Drug Users

a) Education and Training - Health Scotland and NES working with Scottish Training on Drugs and Alcohol ( STRADA) will develop (on a multi-agency and multi-disciplinary basis) education and awareness materials about the risks of injecting drug use. Specific actions should include: the wide dissemination and use of a video about injecting practices produced for drug workers which is based on research into injecting practices published in 2004; and the development of professional briefing materials with particular focus on staff who do not have regular contact with the client group.

b) Health Scotland and NES with stakeholders will work to raise awareness and understanding of HCV amongst a broad range of professional groups from the statutory, independent and voluntary sectors.

Since the main route of transmission of Hepatitis C in Scotland is through injecting drug use, Section 1 of the draft Action Plan focused on preventing transmission of Hepatitis C among injectors. Three actions were proposed, and each action included two or more specific objectives.

There was consensus among the respondents that action to prevent transmission was crucial, and in general, respondents felt the three proposed actions were appropriate - as was the focus on injecting drug users. However, while the response to this section of the Action Plan was largely positive, respondents also suggested significant changes, or changes in emphasis. The main themes from these comments are summarised below. In addition, respondents felt that the draft Action Plan had omitted several crucial issues, including:

  • Action to improve availability and accessibility of treatment for drug users.
  • Action to improve the quality and accountability of services (beyond the specific area of prescribing practice, mentioned in Section 1.1.a).
  • Action to develop more effective ways of engaging with drug users.
  • Action to prevent drug use among young people.

4.1 Omissions

Improving availability and accessibility of treatment for drug users

Getting drug users into treatment was seen by respondents to be one of the most effective ways of reducing the risk of acquiring Hepatitis C and other blood-borne viruses. It was felt that action was needed to expand the availability and accessibility of treatment services through:

  • Reducing waiting times
  • Developing effective outreach services
  • Offering alternatives to methadone
  • Expanding the availability of community pharmacy drug services

Improving the quality and accountability of services

There was a perception among a number of respondents that the quality of services for drug users is highly variable across Scotland - and indeed, that some services were clearly not operating on the basis of "best practice". This perception appeared to apply both to low threshold services like needle exchanges, and structured treatment services.

While respondents agreed that action was needed to ensure that prescribing practice was brought in line with clinical guidelines (Action Plan, Section 1.1.a), they also felt action was needed in terms of:

  • Developing and establishing quality standards for needle exchange and drug treatment services
  • Ensuring that these standards are applied consistently across Scotland, and monitoring Health Boards on their performance against them
  • Auditing individual services
  • Facilitating better joint working between health and social care and between the voluntary and statutory sectors
  • Ensuring that those who are in treatment have a comprehensive package of care which includes emotional and social support.

Concern was expressed that harm reduction messages are not being communicated effectively to drug users and that local politics and "territorial disputes" are hampering the effective delivery of services. One respondent called for the creation of body in Scotland similar to the National Treatment Agency in England - to ensure quality and equity of service delivery.

Developing more effective ways of engaging with drug users

Respondents felt that major efforts are needed to engage with drug users more effectively. The growing incidence of Hepatitis C, and findings from recent research both point to a need for further work in this area. 2 Respondents felt that new injectors and young injectors should be targeted.

Respondents called for outreach and mobile services to be established (or expanded) to engage with drug users who are not in contact with services. Action should also involve developing treatment models in prisons and improving continuity of care between prison and community.

Preventing drug use among young people

In general, respondents felt that the definition of prevention activity should be widened - that the Action Plan should not simply target those who have already started injecting drugs, but also those who are at risk of starting. This had been highlighted as a priority by key stakeholders (draft Action Plan, appendix B) but respondents felt it was not well-reflected in the Action Plan itself. Respondents saw a particular need for action in reaching out to and educating vulnerable young people - before they even begin to use drugs. These efforts should include:

  • Better prevention, health promotion and early intervention initiatives in schools.
  • Services which adopt a holistic approach to the needs of vulnerable young people.
  • Peer-led interventions whereby current users discourage young people from taking up drug use.

Other omissions

In addition to the issues mentioned above, respondents also felt that the Action Plan had not addressed a wide range of other significant issues. These will not be described in any detail, but are merely listed here for information.

  • No mention of the role that Drug Action Teams can play in prevention, particularly in relation to the commissioning of services (including needle exchange) for drug users.
  • Very little acknowledgement of the pivotal role of addiction services in providing treatment and support to drug users.
  • No mention of the important contribution that nurses can make to address prevention, education and management of Hepatitis C. It was suggested that the post of Blood-Borne Virus Nurse Consultant could be created in each NHS Board.
  • No mention of the role of primary care in prevention.
  • No mention of the role of agencies working with vulnerable groups, such as the homeless and sex workers.
  • No recognition of good practice among many voluntary sector agencies in relation to prevention.
  • No mention of the importance of vaccination for Hepatitis A and B among high risk groups.

The remainder of this section will now go on to look at the main issues highlighted in relation to specific objectives in Section 1 of the draft Action Plan. Note that comments on Action 1.3 (raising awareness among staff and organisations working with drug users) will be discussed in Section 6.6 of this report, along with the other comments received in relation to "Increasing Awareness."

4.2 Reducing transmission of Hepatitis C among current IDUs

Improving education and awareness among injectors

There was agreement among respondents about the need to improve education and awareness raising among injectors. However, there was a feeling that action in this area obviously needed to go beyond the Scottish Prison Service (see Section 1.1.e.) and there was a request for clarity in the Action Plan about precisely who - apart from the Prison Service - should be responsible for this. There was also a request for detail about the messages and approaches that should be advocated, given the importance of ensuring that consistent, factually correct messages are delivered.

Interestingly, a number of other respondents had thoughts about this, and suggested that messages to injectors should specifically aim to counter the fatalistic attitudes that many injectors have towards Hepatitis C and give practical instruction (including graphic visual instruction) on safe injecting technique and hygiene. (It was suggested that the Ask Frank website, http://talktofrank.com/ , may be an appropriate location for web-based information.)

There was a strong feeling that leaflets and other written materials alone are not effective in educating and raising awareness among injecting drug users. Furthermore, one individual pointed out that previous research among injectors had shown that their principal source of information is, in fact, their own peer group. Several respondents called for further work to be done in developing peer-led harm reduction interventions. In addition, respondents also suggested that the use of video and internet interventions could be very effective in communicating to this group.

Reducing re-using and sharing of injecting equipment

While respondents agreed that educating and raising awareness among drug users was crucial, they also made the point that "the compulsion to use drugs" can override knowledge and common sense. Therefore, respondents felt that it must be a priority to ensure that injectors had access to clean equipment when they needed it. In general, there was a feeling that Action 1.f should be the main priority for action under the heading of prevention.

However, it is clear that respondents would have liked the draft Action Plan to go much further than it does. A number of individuals, responding on behalf of large groups, wrote that the priority must to be "massively increase the availability of clean injecting equipment", and that this should be linked to the development and expansion of effective outreach and treatment services. It was suggested that targets should be set for increased staffing and service provision. One respondent specifically asked that the wording of Action 1.f be changed from "These interventions could include…" to "These interventions should include…" Again, respondents advocated a variety of methods for improving access to clean injecting equipment, such as:

  • Increasing the number of mobile and backpacking (including home delivery) services
  • Increasing the number of pharmacy needle exchanges and developing the full potential of these services
  • Training active injectors to deliver high-quality outreach needle exchange services
  • Making needle exchange available round the clock through existing 24/7 services, such as A&E Departments
  • Introducing vending machines
  • Introducing supervised injecting rooms
  • Making needle exchange available from all agencies that have regular contact with injectors

As mentioned briefly above, respondents also called for action to establish standards for needle exchange services, as well as action to improve the accountability of NHS Boards in relation to the planning and delivery of needle exchange services. Concerns were expressed that services in some areas were not operating, or were not able to operate, according to 'best practice'. One respondent - writing on behalf of a local service users' group - expressed anger and dismay that drug users in her Health Board area were denied access to injecting paraphernalia which was available for free in a neighbouring Health Board.

The issue of paraphernalia distribution was specifically raised by a large number of respondents, and the general view was that the provision of paraphernalia - water, swabs, spoons, and filters - should be routine in needle exchange services across Scotland. Several respondents cited evidence that the provision of such paraphernalia has been widely shown to attract injectors into services. Respondents were in favour of the Action Plan's proposal to give drug users the means of identifying their own needles / syringes through colour-coding or labelling.

There was also a suggestion that there should be certain standards for pharmacy needle exchange premises - namely, the premises should be large enough to incorporate a treatment room facility which could be used to run clinics.

Respondents welcomed the action to undertake a national needle exchange survey (Action 1.g), but felt that, following publication of the survey findings, there should be an action and improvement plan drawn up for each local area.

4.3 Preventing initiation into injecting

In general, respondents were in favour of the proposed actions to prevent initiation into injecting. However, there were also a number of dissenting voices. One respondent questioned whether it was possible to 'prevent' initiation into injecting. This individual suggested that the priority should be on improving education and advice to young people so that they are able to make informed choices.

Furthermore, even among those respondents who agreed with the prioritisation of this action, there were a few caveats. In particular, respondents felt that:

  • The Action Plan should provide details of how the effectiveness of action to prevent initiation into injecting would be measured
  • Further details on the "Break the Cycle" intervention should be provided in the Action Plan
  • The "Break the Cycle" intervention should be recommended for use in all contexts where an injecting drug user has one-to-one contact with a key worker they trust - not just within prisons

One respondent, although supportive, warned that this action may be less effective than other interventions, and therefore be less cost effective in terms of resources.

It was also suggested that the emphasis should not just be on the Scottish Prison Service as "this could almost be seen as too late for some people." Again, respondents felt that greater priority should be given to targeting education and prevention initiatives in schools and youth groups - before young people begin to use drugs or begin to inject.

4.4 Raising awareness among staff and organisations working with drug users

The third action under the heading of Prevention was to raise awareness among staff and organisations working with drug users. Because of the overlap between this action and Action 3.5 (Increasing awareness among professionals), comments on both these actions will be summarised together in Section 6.6.

4.5 Other prevention issues

Comments were made on several other issues to do with prevention. These are summarised below.

Role of prisons in prevention

The Scottish Prison Service ( SPS) was mentioned in Section 1 of the draft Action Plan as having a role in three specific actions (1e, 2a, and 2b). In relation to these particular objectives, respondents generally highlighted a need for action beyondSPS, but also welcomed the role that SPS could play. It was acknowledged that significant action was already underway in SPS in the area of harm reduction and immunisation for Hepatitis B. Respondents called for further efforts to:

  • Educate and raise awareness among prison staff about Hepatitis C.
  • Stabilise chaotic drug use through effective substitute prescribing - not only of methadone, but also buprenorphine, which was considered to have some advantages over methadone.
  • Develop needle exchange programmes or make available vending machines for distributing sterile needles / syringes and other paraphernalia.
  • Discourage tattooing, and inform inmates of the risks involved in using make-shift and non-sterile equipment for this purpose.

Testing and treatment as part of a prevention strategy

It was noted that the draft Action Plan said very little about secondary transmission. Several respondents suggested that testing and treatment for Hepatitis C should be considered as part of any prevention strategy. Pre- and post-test counselling could be used to encourage those who are infected not to spread infection further. Those who test negative could be given information about how to prevent infection in the future.

Linking to other initiatives

Respondents made the point that hepatitis C is only one risk among many associated with drug use. The Hepatitis C Action Plan should link to and build upon, rather than compete with, other on-going initiatives in the field of addictions, HIV prevention and sexual health. Respondents specifically wanted the Action Plan to make mention of the risk of co-infection between Hepatitis C and HIV. And there was particular concern from a number of respondents that the lack of dedicated funding for the Action Plan might jeopardise long-established HIV initiatives.

 


 

High quality health and social care services

Section 2: High Quality Health and Social Care Services

Issue

Current management of known hepatitis C patients is not standardized across Scotland. The patient pathway between primary and secondary care also needs to be more integrated.

Actions

1) Development of Managed Clinical Networks -SEHD and the Scottish Viral Hepatitis Group will support the development of MCNs in Scotland. This will help to ensure that there is equity of access to treatment and care for all people with HCV and that models of best practice are followed and audited. For a full description of the role and responsibility of a MCN, please see NHS Circular: HDL (2002) 69 available at www.show.scot.nhs.uk.

2) Development of a SIGN Guideline - The SIGN group will develop guidelines for the diagnosis, treatment and care of people with HCV.

3) Community Health Partnerships will have the devolved responsibility to make available to the public information about local statutory and non-statutory services. This will be useful in increasing the availability of up-to-date information to the patient and their carers, public and the professionals.

4) NHS Boards will make better use of Primary Care contracting arrangements

including enhanced services in the new GMS Contract ; section 17C and 2C contracts; new pharmacy and dental contracts. The full potential of the available contractual options is yet to be used by NHS Boards, especially in areas such as the management of people with substance misuse, eg medication, discouraging sharing of injecting equipment or starting the process of injecting.

Section 2 of the draft Action Plan proposed four main actions. The stated aim of these actions was to provide standardisation in the management of Hepatitis C patients across Scotland, and promote greater integration between primary and secondary care. Although many individuals agreed with the general aims of this section, the majority of respondents felt that this section needed much more development. In general, respondents felt strongly that the priority for this section should be on action to: (a) increase the numbers of individuals who were being tested and treated, and (b) ensure equity of access to testing and treatment for individuals diagnosed with Hepatitis C. However, many felt that the current draft Action Plan had not identified appropriate actions that would achieve this. Comments focused on five main issues.

5.1 General comments

Lack of clarity and detail

Respondents felt that this section should be central to Scotland's response to the problem of Hepatitis C and yet, many pointed out that actions described in this section were vague and lacked the detail required for planning.

Skewed emphasis on health services rather than multi-agency approaches

In general, respondents felt that this section of the plan was too narrowly focussed on health services. Many highlighted the crucial role that social work and voluntary sector agencies have in providing care and support to individuals with Hepatitis C and suggested that these services can have a strong positive impact on compliance with treatment regimens. Some went further, to suggest that any action to improve treatment and care would fail without the involvement of non- NHS agencies, particularly since non- NHS agencies are often the first point of contact for those who are infected. Treatment and support for Hepatitis C must involve input from a range of specialists, not only specialist medical and nursing staff, but also specialist social workers, pharmacists, dieticians, psychologists, blood-borne virus specialists, addiction workers, and services in the voluntary sector. Several respondents particularly commented that they would like to see the Action Plan include a statement about the need for access to services that can help people reduce their alcohol use. Respondents also saw an important role for prisons, and suggested there should be action by the Scottish Prison Service to provide anti-viral treatment to prisoners where appropriate.

Respondents felt that new models of care for people with Hepatitis C are urgently needed, and that these should be community-based, as recommended by the Consensus Conference held in April 2004. It was pointed out that drug users often have difficulty accessing both primary and secondary care services without support. A number suggested that community outreach and shared-care models would improve the capacity of primary care services to respond to the needs of infected individuals at every stage of treatment and care.

One respondent, relaying the comments of a service user in her area, also highlighted the importance of providing informal support to those undergoing treatment for Hepatitis C. Individuals with Hepatitis C can feel very isolated. Support could also take the form of a local group of other individuals receiving treatment.

Lack of action to promote testing

Respondents commented that there was no mention of the importance of testing for Hepatitis C anywhere in the draft Action Plan. It was pointed out that the Plan includes actions to raise awareness among professionals and among those who are undiagnosed, and it includes actions on treatment, but the lack of specific action to improve access to testing was seen to be a significant omission. Furthermore, respondents pointed out that it is not enough to simply test people. Many who are tested fail to return for their result. Many others who are aware of their status do not attend follow-up appointments. Better, more person-centred support is needed for HCV-infected people at every stage.

Lack of accessible testing, treatment and support services

Respondents expressed concern about the Action Plan's silence on the subject of the accessibility of both treatment and care services - which leads to patients having to travel great distances to access services, and thus has an impact on compliance with treatment. As mentioned above, this situation would best be ameliorated by introducing community-based clinics for testing and treatment. One respondent felt it would be useful if access to social work assistance for Hepatitis C were standardised across local authorities.

In addition, one of the Action Plans stated objectives was: "to provide the optimal care and support for HCV diagnosed persons who are able to benefit." Respondents asked for clarification about the terms "care and support". It was suggested that all individuals with a positive Hepatitis C diagnosis should have care and support available to them, regardless of whether they will necessarily benefit from anti-viral therapy.

Other general issues

Other general concerns in relation to the actions proposed in Section 2 were mentioned less often, but are no less significant. These include:

  • the draft Action Plan's emphasis on implementation of the SNAP report, when more up-to-date information and recommendations are now available from the Hepatitis C Consensus Conference (2004)
  • the lack of specific guidance to professionals who work with individuals who are co-infected with HIV and HCV
  • the general lack of evidence to support the proposed actions.

The remainder of this section will focus on comments made in relation to the specific proposals made in Section 2 of the draft Action Plan.

5.2 Managed Clinical Networks

In general, respondents were in favour of establishing Managed Clinical Networks ( MCNs) for the care of people with Hepatitis C - although there were a number of significant caveats which are discussed below. Those who supported this action felt that MCNs would ensure greater consistency of care and the implementation of best practice. The purpose of an MCN was seen to be as "establishing evidence-based standards of care, auditing existing practice, and making changes in pursuit of agreed standards." The creation of one or more MCNs for Hepatitis C was considered to be a practical way to plan and implement a co-ordinated and integrated service, and to develop a better level of understanding and communication among key stakeholders. However, there were some reservations expressed about this proposed action.

Respondents felt that the term "Managed Clinical Network" was unhelpful and inappropriate, given the vital importance of non- NHS agencies in the treatment, care and support of individuals with Hepatitis C. Many advocated the development of "Managed Service Networks" rather than MCNs and, as already mentioned, felt that the Action Plan needed to go much further, to identify and propose new community-based models of care for infected individuals.

Several respondents expressed a need for further detail about the remit and role of the MCNs. In addition, following on from the suggestion that there should be a wider focus on "Managed Service Networks," a number of respondents had suggestions about individuals and organisations which should be included. Besides those already mentioned above (specialist nurses, pharmacists, addiction workers, psychologists, etc.), it was felt that alcohol misuse specialists, those responsible for the care of prisoners and those responsible for Prison Throughcare services should also be involved.

Respondents asked for clarity about how many MCNs would be established - would there be a single nationwide MCN, or a larger number of local or regional MCNs? One individual expressed scepticism about the need for an MCN in her health board area, given the low prevalence of Hepatitis C there. Two other respondents suggested that it would be appropriate to establish an MCN for NHS Greater Glasgow alone.

5.3 SIGN Guideline

In general, respondents were in favour of developing a SIGN Guideline for the care and treatment of people diagnosed with Hepatitis C. Many felt that a SIGN Guideline would provide evidence of best practice for treatment, would give professional staff a universal standard to follow, and would ensure good and consistent standards of care across Scotland.

Some respondents suggested that the Guideline should include advice about lifestyle modification and drug treatment, and guidance on offering social and emotional support and non-medical care alongside medical interventions. Another suggested that it should also include guidance on managing end-stage liver failure and the place of liver transplants for individuals with Hepatitis C.

One respondent expressed concern that the draft Action Plan provided no guidance at all to professionals about managing care of those who were already infected, but chose instead to leave this until the publication of the SIGN Guideline in 2006.

Several respondents saw the completion of this Guideline as a top priority. However a few individuals did not. It was pointed out that the Guideline is, in fact, already nearing completion. Moreover, clinical protocols for the treatment of Hepatitis C are already available from the National Institute for Health and Clinical Excellence ( NICE) and the Scottish Medicines Consortium ( SMC). However, it was acknowledged that a SIGN guideline could promote greater consistency of approach to HCV management, clinical standards and audit. The implication of this comment is that the priority of the draft Action Plan should be not in developing a SIGN Guideline, which is going to happen anyway, but rather in ensuring its implementation across Scotland. One individual pointed out that if the SIGN Guideline is to be implemented properly, there will be significant resource requirements. However, the draft Action Plan did not acknowledge this.

5.4 Role of Community Health Partnerships

Very few of the respondents to the consultation commented on the proposal in the draft Action Plan that community health partnerships ( CHPs) should make information available to the public about local statutory and non-statutory services. However, the majority of those who commented saw very different roles for CHPs than the one proposed. In general, individuals were strongly in favour of a multi-agency, partnership approach to the treatment of Hepatitis C which CHPs represent. Some saw the role of the CHP as ensuring that support is provided to individuals undergoing anti-viral therapy to enable them to complete the course. One individual saw the CHP as having a role in education and training of professionals, through providing protected learning time.

A few respondents expressed the view that it would take some time for CHPs to become established, and that the development of these groups was happening in different ways in different areas according to different timescales. Therefore, it was felt that it would not be helpful to rely too much on CHPs at this point in time, and that it would be unrealistic to expect CHPs to "provide short-term solutions to the complex issues associated with HCV management."

5.5 Primary Care contracting

There were also very few comments on the proposed action upon NHS Boards to make better use of Primary Care contracting arrangements. The majority of these comments expressed reservations about the prioritisation of this action, while a number of respondents were unsure what was meant by this action, and asked for clarification. One individual suggested that it would be helpful if the Action Plan provided more detail about which aspects of care for drug users are included in core services and which are enhanced services.

Interestingly, but perhaps not surprisingly, of those who were in favour of this particular action, several were general practitioners, pharmacists, or other individuals working in the NHS, who appeared to be well aware of the potential strengths of the new GMS, community pharmacy and general dental services contracts. One GP commented that National Enhanced Service funding had "transformed" the level of care he and his colleagues were able to offer to drug users in their practice. However, even these individuals expressed the view that without substantial new funding, primary care would be unable to deliver the level of support that would be required to manage the care of individuals with Hepatitis C.

Respondents suggested that the GMS contracts should be revised to include provision for increased HCV testing (and perhaps provide financial incentives for GPs to test people), but it was pointed out that this would have implications for laboratory, treatment and care costs, and for training in relation to pre- and post-test discussions.

However, in general, respondents expressed a concern that primary care is overstretched already. Others pointed out that drug users often have problems accessing normal primary care services - thus the need for developing new models of care for these individuals. Again, integrated outreach services were advocated.

Another individual suggested that there was little evidence in her area that the GMS Enhanced Services contract had been used to improve services for injecting drug users. Another pointed out that many NHS Boards are struggling to find GPs in their area who are willing to provide enhanced services. Clearly, the positive impact of these contracts is variable across Scotland. Presumably because of this, several respondents felt that GP contractual issues in relation to HCV treatment would be better addressed by the Scottish Executive Health Department on a national basis, rather than on a piecemeal basis by each individual NHS Board.

Again, the view was expressed that a focus on primary care contracting did not acknowledge the significant role that non- NHS professionals have to play in the treatment and care of individuals with Hepatitis C.

Increasing awareness about hepatitis C

http://www.scotland.gov.uk/Publications/2006/06/20091252/7

Section 3: Increasing awareness about hepatitis C

Issue

Many of those who have the HCV are unaware of their status. Increasing awareness aims to minimise transmission through greater knowledge of the routes of transmission and by reaching those who may be unaware they have HCV, to encourage them to come forward for testing. In addition, there is a lack of knowledge and understanding about the subject of HCV - not only among those who have, or are at risk of acquiring the virus, but also among health and social care professionals who could have a crucial role in prevention and treatment.

Actions

1. For those who know they have hepatitis C

Health Scotland working with HPS, SPS and relevant voluntary organisations will ensure there are information materials produced to give information about reducing harm - such as not drinking alcohol; reducing risk of other hepatitis infections through immunization and about preventing transmission to others. This should also include advice and practical help on social and economic issues.

2. For those newly diagnosed

Health Scotland working with HPS, SPS and NHS Boards will work to develop and make available nationally the system which exists in NHS Greater Glasgow whereby a diagnosis of hepatitis C triggers information to both the individual and the GP.

3. For those with hepatitis C, but who are unaware of their infection

Health Scotland with HPS, SPS, primary care, voluntary sector and target groups involvement will develop a two-fold approach. First, general provision of information to the public, and second the development of targeted work through the primary care setting; identifying HCV infected former IDUs is a priority as a large proportion of such individuals now need, and would be eligible for, antiviral therapy.

4. For the General Public

SEHD, Health Scotland and HPS will work together to roll out a low key information campaign through the press to improve public awareness of hepatitis C. Information about blood-borne viruses in general will also be included where appropriate in school-based health education.

5. For professionals

NES working with stakeholders will undertake to increase awareness and understanding amongst a broad range of professional groups from the statutory, independent and voluntary sectors. (Please also see Action 3 under Prevention.)

The draft Action Plan proposed five actions under the heading of awareness-raising. Each action had the aim of raising the awareness of Hepatitis C among a different target group. However, as many respondents pointed out, the actions under this heading included not only those which were intended to raise awareness, but also those which had the aim of education.

In general, respondents were fully in support of the need to raise awareness of Hepatitis C among a range of groups. The involvement of Health Scotland, Health Protection Scotland, and the Scottish Prison Service was welcome in terms of awareness-raising, as was the input from STRADA and NHS Education Scotland in terms of training and educating professionals. However, respondents also felt that the Scottish Drugs Forum and the Hepatitis C Resource Centre had a crucial role to play, both in awareness-raising, and in training professionals. Respondents also suggested that local community pharmacists and NHS Health Promotion departments should be involved in raising awareness among the general public. It was also pointed out that both the Royal College of General Practitioners ( RCGP) and the Royal College of Nursing ( RCN) had significant roles to play in training and educating of GPs and nurses respectively.

For the most part, respondents felt that the draft Action Plan had identified groups which should be the focus of awareness-raising and education - although there were also a large number of suggestions about additional groups to target (listed below). Concerns were expressed about a number of issues.

6.1 General concerns

Lack of clarity about aims and activities

Once again, there was a general feeling that the actions described in this section lacked detail for planning, and that some of the proposed actions required clarification.

Respondents argued that the aim of awareness-raising should be made explicit and that Action Plan should be more specific about what awareness-raising activities would achieve and how. It was suggested that certain actions appeared to be contradictory, confusing and implied a lack of commitment. This comment was made especially in relation to the proposal to roll out "a low key information campaign through the press." With few exceptions respondents disagreed strongly with this proposal, and instead advocated a high-profile, on-going campaign. Respondents pointed out that the primary aim of awareness-raising should be:

1. to identify people who are at risk, and

2. to get them to come forward for testing.

In addition, such a campaign should also take steps to educate the public and reduce the stigma associated with Hepatitis C. Comparisons were made with the high-profile HIV/ AIDS education and awareness campaigns of the 1990s, and respondents highlighted the need for a similar campaign for Hepatitis C. Respondents consistently questioned not only the purpose of a low-profile campaign, but the value of it. A number asked whether the proposal for a low-profile campaign was "evidence-based" and called for the Action Plan to justify such an approach. Many argued that a low-profile campaign would be a waste of scarce resources since evidence from other parts of the world (including England) shows that such campaigns do not succeed in driving those who are risk to come forward for testing - nor do they make any impact on improving public and professional awareness of Hepatitis C, or on reducing stigma. Others expressed surprise and concern that the Scottish Executive should advocate a low-profile campaign, despite the very high estimates of individuals with undetected Hepatitis C infection and the obvious need for better, clearer and more easily accessible information among health and social care professionals. One individual warned that, "a low-key campaign will result in significant numbers of people dying quite unnecessarily because they will only present at hospital when they begin experiencing the symptoms of end-stage liver disease and are beyond either treatment or transplant."

Target groups

As mentioned above, respondents generally felt that the draft Action Plan had identified the correct groups for education and awareness-raising activities, but they also proposed additional groups. These groups were considered either to be at high risk of having or acquiring the Hepatitis C virus, or were seen to have an important role in prevention, diagnosis, treatment, care and support.

Concerns were expressed that the draft Action Plan considered it a priority to identify Hepatitis C infection among former drug users, but not among current injectors - many of whom continue to be involved in high risk behaviours in the absence of a diagnosis.

  • Recreational drug users
  • New injectors and young injectors
  • Current injectors
  • Drug users in treatment or rehabilitation programmes
  • Former injectors, in particular those over 35
  • Users of performance-enhancing drugs
  • Pregnant women and their partners
  • School pupils / young people, especially those who regularly truant or who live in areas where there is a high prevalence of injecting drug use
  • Gay men who may have HIV infection
  • Prostitutes
  • Homeless people
  • Prison inmates - both short- and long-term prisoners, and not just those who are through to be drug users
  • Newly released prisoners
  • Those who received blood products before 1986 (eg, haemophiliacs) or blood before donor screening was introduced in 1991
  • People from countries with a high prevalence of Hepatitis C who may have become infected through non-sterile instrument use in dental or medical settings (i.e, those from Pakistan or Bangladesh)
  • Families and partners of injectors and / or former injectors
  • Community groups
  • Addiction workers
  • Those responsible for commissioning BBV prevention services
  • Community pharmacists
  • General practitioners and primary care nursing staff
  • School nurses
  • Midwives, health visitors and hospital maternity staff
  • Staff in voluntary sector agencies which may have contact with at-risk groups
  • Staff who have contact with users of performance-enhancing drugs
  • Those working in the criminal justice system - police, social workers, probation staff, prisoner escort staff and prisoner staff
  • Teachers and others involved in school and community education programmes
  • Laboratory staff
  • Tattoo and body piercing artists

The remainder of this section will provide a summary of respondents' comments on the specific actions proposed in the draft Action Plan.

6.2 Action for those who know they have Hepatitis C

Respondents agreed that there was a need for better, more effective information for those who have been diagnosed with Hepatitis C. It was suggested that clients should be given information on what is involved in treatment, when it should start, the balance of risks and benefits, success rates according to genotype and new drugs in the pipeline. The purpose of such information should be to help individuals make an informed choice about their treatment, and also to correct misconceptions about Hepatitis C, particularly among injecting drug users who often have very fatalistic attitudes. Respondents also felt that action in this area should not simply be about developing written materials, but should also include support from outreach nurses and local area support groups.

6.3 Action for the newly diagnosed

Action 3.2 proposed to establish a national system whereby a positive diagnosis of Hepatitis C triggers information to both the individual and their GP. In general, respondents had reservations about such a system. Concerns were expressed about patient confidentiality in particular. Respondents argued that information about an individual's diagnosis should only be returned to the individual him/herself and the person / clinician requesting the test - unless the individual gives consent to do otherwise. The point was made that individuals may seek to be tested in a harm reduction clinic or a variety of other contexts, and may not want other agencies or individuals, including their GP, to be informed of their status. Concerns were voiced that the development of such a system could actually deter people from coming forward for testing.

On the other hand, there was a minority view expressed by a few respondents that such a system would be welcome, but that it would require GPs to be appropriately trained in order for it to be effective.

There was also a question about the extent to which Health Scotland should be involved in the development of such a national system. The task was seen to be more appropriately lead by Health Protection Scotland and NHS Boards.

6.4 Action for those with Hepatitis C, but who are unaware of their infection

Respondents were in full agreement with the need for action to identify those who have Hepatitis C, but who are unaware of their infection. However, the point was made that those who have Hepatitis C, but who are unaware of their infection, are in fact, the general public. Therefore, perhaps a greater distinction needs to be made in the Action Plan between action to educate the general public (Action 3.4) and action to identify those who are infected but unaware of their infection (Action 3.3). The latter action should include a greater emphasis on screening and testing, and the role of the media.

Once again, concerns were expressed that the identification of HCV+ individuals would lead to significant pressure on treatment services. Respondents called for adequate funding to be made available for this. As one respondent put it, "It will clearly fail both patients and clinicians if newly diagnosed patients are merely put on waiting lists that already extend to two years."

Working with the national and local media

There were three main views among respondents about working with the national and local media. The most common view was that action in this area was extremely important and should be given a high priority. By working pro-actively with the media as part of a planned communications strategy, and encouraging the use of evidence-based information, respondents felt it would be possible not only to reach former injecting drug users who may be unaware of their Hepatitis C status, but also to reduce the stigma associated with Hepatitis C.

Respondents made a number of suggestions about how to make best use of the media, and in relation to this, the need to learn from previous high-profile HIV/ AIDS campaigns was highlighted. One individual saw the free press (such as the Metro) has having an important role in reaching individuals whose main source of information is newspapers. Another felt that the use of local press and radio would ensure the widest possible dissemination of information in remote and rural communities. Another advocated involving high-profile celebrities and/or having Hepatitis C as a storyline in popular TV programmes. Given the potential for such activities to reach former injectors who may not be aware of their Hepatitis C status, it was suggested that articles and advertisements should include information on where to get further advice.

The less prevalent view was that the use of the media should not necessarily be a priority. Respondents expressed concerns about poor reporting, distortion of evidence, and the media's tendency to follow their own agenda of picking on information which will make good headlines.

In between these two views were those who felt the media had an important role to play, but who felt that caution was needed in using the media as a tool. One respondent said, "The content of press releases needs to be considered carefully to encourage readers to read the whole article." Another felt that "care should be taken to reassure the general public about any risks to themselves."

6.5 Awareness-raising among the general public

In general, respondents agreed with the need to raise awareness of Hepatitis C among the general public. However, as already mentioned, there was strong disagreement with the proposal to undertake a "low-key information campaign through the press."

Respondents were much more in favour of the Action Plan's proposal to include information about Hepatitis C and other blood-borne viruses in school-based health education classes. Several respondents highlighted the role that school nurses could play in relation to this, and suggested that school nurses should be included in professional education and training initiatives.

It was pointed out that many young people who are at risk of becoming problem drug users are also more likely to truant and leave school early. Therefore, it was suggested that the Action Plan should also target educational initiatives and programmes for excluded and vulnerable young people.

6.6 Training and awareness-raising among professionals

With few exceptions, respondents felt that education, training and awareness-raising among staff should be a high priority for action. It was felt that action in this area was crucial since it formed the basis for the success or failure of all other actions and interventions. It would ensure that consistent messages were communicated, and would improve referral pathways. However, one respondent expressed a feeling that, "apart from the video, recommendations on training [in the draft Action Plan] are thin and vague, with no clarity about who the target groups are and how they would be priorities when the training is rolled out." While this view was not expressed explicitly by most other respondents, the large number of very specific comments that were made on this subject would suggest that many other respondents also saw a need for further clarity. One individual requested that the Action Plan define precisely what topics should be covered by education and awareness-raising directed at professionals - for example, prevalence of Hepatitis C, risk factors, health outcomes and safer injecting practices.

For the most part, respondents felt that specialist harm reduction staff were already well-informed about Hepatitis C. The problem for specialist staff was not seen to be their lack of awareness and information, but rather the lack of service provision in some areas, which resulted in staff having very little to offer clients. On the other hand, the point was also made that one cannot necessarily assume that all harm reduction staff have up-to-date information. Another individual suggested that even among needle exchange workers, there are very few who could actually give instruction on good injecting technique. This individual highlighted the fact that the training received by needle exchange workers is often ad hoc, and varies from one service to another. There could be enormous benefit in having a standard programme of training for all needle exchange staff.

However, the greatest need for training and education was seen to be in relation to non-harm reduction staff. Respondents felt that all staff working with drug users should have at least a basic minimum level of knowledge about Hepatitis C, and that beyond this, training should be tailored to the specific needs of particular groups of staff.

Respondents felt that education and training on the subject of Hepatitis C should be accredited, developed and delivered on a multi-disciplinary / multi-agency basis and involve input from front-line staff and service users.

Suggested methods for delivering education and training included: study days, an annual conference or seminar, self-directed learning tools (perhaps available via the web), road shows, college and university courses for health and social care professionals and the use of video technology. The video on injecting practices developed by Exchange Supplies on the basis of the research by Avril Taylor, was seen to be a particularly useful training resource.

Finally, a number of respondents felt that any training and awareness-raising initiatives should include laboratory staff involved in the testing of blood samples, and those who send samples from Hepatitis C-positive patients to laboratories for analysis. On the other hand, others commented that NHS staff who work with bio-hazards are very well trained and have a high level of awareness of the precautions they must take to avoid infection in the course of their work. Given the concerns expressed by some respondents on this topic, it is possible that procedures and protocols used by laboratory staff may vary across Scotland. It may be helpful if the Action Plan included action to review, update and audit laboratory procedures and protocols on a regular basis.

Skills and resource development for professionals

Respondents had a number of thoughts about the skills and resources that would best support professionals. Apart from training and education activities mentioned above, respondents felt it would be helpful to have access to up-to-date local information resources and networks.

More specifically, respondents saw the need for information to which they could refer, and to which they could refer others. Such information could be available via a website, or it was suggested that it could be beneficial to have an area contact person - an expert advisor in the area of Hepatitis C - whose role would be to provide information and advice to local staff on matters related to Hepatitis C.

Respondents also highlighted a need for guidelines and written procedures for staff who come in contact with Hepatitis C infected persons.

Finally, the point was made by one respondent that the best forms of support for professionals are high-quality local services to which they can refer people.

 

7. Co-ordination, monitoring and research

Section 4: Co-ordination, Monitoring and Research

Issue

Numerous agencies and professional groups in Scotland have been involved in preventing the transmission of, and managing the care of persons with, hepatitis C infection. Further, a plethora of guidelines which relate to hepatitis C prevention and clinical care either exist or are in preparation. In view of the scale and complexity of Scotland's problem, it is essential that a national co-ordinated approach to the development, implementation and evaluation of the Action Plan is introduced.

Action

Between 1995 and 2004, the Scottish Centre for Infection and Environmental Health ( SCIEH), in association with stakeholders, established surveillance systems to monitor the spread and clinical burden of HCV infection throughout Scotland. From April 2005, Health Protection Scotland (a new organisation which incorporates SCIEH) will continue its monitoring function, as above, but will also take on the role of co-ordinating the development, implementation and evaluation of the Hepatitis C Action Plan to ensure that knowledge relating to HCV is more effectively translated into health protection action.

Specific Actions

1. Co-ordination

a) HPS will establish and lead a Hepatitis C Action Plan Co-ordinating Group (Hepatitis C APCG); this will comprise of individuals who will represent all disciplines and Health Board areas which have a stake in the Action Plan. The remit of the group will be to develop, implement and evaluate the plan's actions. The group will be accountable to the Scottish Health Protection Advisory Group and to Scotland's Chief Medical Officer. The Hepatitis C APCG will be supported administratively and scientifically by HPS; this role will be undertaken by a clinical scientist to be appointed by HPS.

b) NHS Boards (including special Boards) will designate, at Director level, a Bloodborne Virus co-ordinator who will be responsible for reporting to HPS the progress being made in implementing and evaluating the Action Plan in their NHS Board area.

c) HPS will produce a Hepatitis C Action Plan Annual Report which will provide the latest information on the epidemiology of HCV in Scotland and will indicate progress being made with the plan.

2. Monitoring

a) Since knowledge about aspects of HCV in Scotland is crucial in informing i) the need for new actions, ii) how well actions are being implemented and iii) how well the actions are performing, the following monitoring initiatives are proposed: (Other than the treatment and care database which is managed by clinicians (Lead: Professor P Hayes), these initiatives will be co-ordinated by HPS in association with health protection, clinical and virological specialists.)

b) the establishment of an inventory of HCV prevention activity measures so that the implementation and effectiveness of policies aimed at reducing infection among target populations can be monitored and evaluated.

c) the further development of surveillance initiatives to monitor the prevalence and incidence of HCV and related behaviours (including HCV test uptake) among injecting drug users.

d) the further development of models to estimate the future HCV disease burden in Scotland; particular emphasis will be placed on undertaking economic analyses aimed at measuring i) the cost of screening people for, and treating and managing people with, HCV infection and ii) how these costs would be influenced by different approaches to HCV screening and care.

e) the establishment and maintenance of a database of the treatment and care characteristics of all persons entering HCV specialist services.

3. Research

The APCG will identify priorities for research - particularly that aimed at improving the delivery of HCV-related health care and health protection services.

Section 4 in the proposed Action Plan covered actions in relation to co-ordination, monitoring and research. The main points made by respondents on these topics are summarised below.

7.1 Co-ordination

Action Plan Co-ordinating Group ( APCG)

In general, respondents agreed strongly with the view that a nationally co-ordinated approach to HCV prevention and care was needed. One respondent pointed out that a co-ordinated approach would reduce the risk of confusion among practitioners and service users, and also reduce duplication of effort across agencies involved in the care and support of people with Hepatitis C.

There was also near unanimous support for the establishment of an APCG, and a number of respondents commented that the involvement of Health Protection Scotland in this was "particularly welcome" and would "add credence" to the process of implementing the Action Plan.

Against this backdrop of strong support, respondents made specific comments about the remit and membership of the APCG. They also questioned the reporting and accountability arrangements for the Group, as well as those between the Group and the networks and organisations whose work it might be overseeing and evaluating.

Respondents expressed some confusion, and questioned the role of the APCG as described in the draft Action Plan - particularly in relation to its stated remit for developing actions related to the Action Plan (see p. 4 of the proposed Action Plan, first bullet point under HPS). One individual asked, "Why would the Coordinating Group be "developing" actions when the actions are already defined in the action plan? Surely their role is more about overseeing?" In the absence of detail on this point, respondents suggested the remit of the APCG should include:

  • advancing and overseeing the implementation of the Action Plan
  • monitoring the results of the Action Plan
  • facilitating the development and integration of prevention and treatment services throughout Scotland - and related to this -
  • developing a national planning and commissioning strategy for HCV or BBV services, and finally
  • identifying priorities for Hepatitis C-related research.

The draft Action Plan had stated that the APCG would undertake an inventory of HCVprevention activities. However, two respondents felt the APCG should also commission a needs assessment and compile an inventory of existing treatment services.

Respondents made a number of comments and suggestions about the membership of the APCG. Several felt it was vital that organisations like the UK Hepatitis C Resource Centre and the Scottish Drugs Forum should have key roles in the group because of their strong links with agencies across all sectors (statutory and voluntary, prevention and treatment) nationally and internationally. Respondents suggested the Group should have a broad representative base and should include representation from pharmacy, patients / service users, and possibly even private sector pharmaceutical companies.

A small number of comments specifically related to the accountability and reporting arrangements for the APCG. One respondent felt that the draft Action Plan was not clear enough about who had the lead role in monitoring and evaluating the implementation of the Action Plan. Another commented that paragraph 1.8 in the draft Action Plan should specify reporting mechanisms between Health Protection Scotland and those agencies which have responsibility for implementing the Action Plan. This paragraph currently makes no mention of these arrangements. Finally, other respondents questioned and expressed concern about the ability of the APCG to undertake the tasks set for it by the draft Action Plan. As one respondent said:

"We support the principle for a Hepatitis C Action Plan Co-ordinating Group…. However, this begs a series of questions - What 'teeth' will this Group have, what are its terms of reference and its lines of communication, how will it ensure actions are implemented, and what control will it have in reality over the various organisations and agencies who have been tasked with action, including Health Protection Scotland, particularly if resources are not increased to facilitate action. Is the Scottish Health Protection Advisory Group the most appropriate mechanism to oversee the work of the APCG? While the aims of sharing good practice are commendable, we urge caution to avoid increasing bureaucracy."

Blood-borne virus Co-ordinator at Director level

There were only comments from a few respondents on the proposal to establish a BBV Co-ordinator at Director level within each NHS Board. In general, comments were positive, but again indicate a need for clarification within the Action Plan. Respondents suggested that the establishment of area BBV Co-ordinators, reporting directly to the APCG, would lead to robust implementation of the Action Plan throughout NHS Scotland. Another respondent felt that the creation of these posts could be positive, but only "with the proviso that existing HIV strategic frameworks are equal partners in this process."

However, two respondents - both senior NHS managers (a Director of Public Health and a Chief Executive) - questioned the need for such a post. One individual pointed out that the low prevalence of HCV in her NHS Board area would not justify the creation of a post at Director level, and suggested that existing staff working in the area of health improvement and infectious diseases should take the lead in co-ordination. It is likely that this argument will apply to some other NHS Board areas as well. The second respondent felt that it would be more appropriate for the role of BBV Co-ordinator to be taken on by existing Infection Control Managers or those responsible for managing Healthcare Associated Infections.

Other comments were made regarding the remit of these BBV Co-ordinators and their actual designation / title. In general, respondents saw the role of the BBV Co-ordinator as co-ordinating and commissioning services within each NHS Board area. One respondent suggested that the role of BBV Co-ordinator should subsume the functions of the existing AIDs Co-ordinators. This individual felt that the BBV Co-ordinator should be a specialist in communicable disease control (either a Consultant in Public Health Medicine or a Consultant Virologist / Microbiologist with additional training). Yet another individual felt that the responsibilities of the BBV Co-ordinator needed to be more clearly delineated.

Several comments were made about the designation "Blood-borne Virus Co-ordinator." One respondent requested greater consistency in the use of terminology, and suggested that it may be more useful to refer to this individual as "Blood-Borne Virus Executive Lead," in line with the Sexual Health Executive Leads referred to in Scotland's Sexual Health Strategy. Another argued that the title "Co-ordinator" was misleading, since it would be inappropriate for an individual at Director level to have the role of co-ordination. It was suggested that "Designated Director for Blood-borne Viruses" would be a more appropriate title.

Hepatitis C Action Plan Annual Report

The production of a Hepatitis C Annual Report by Health Protection Scotland was seen as positive, and one means of improving awareness of Hepatitis C among staff. One respondent requested that the Action Plan make a statement about the timing of the report, and suggested that it could usefully tie in with the annual accountability review relating to the AIDs Control Act and provide helpful information for planning at the beginning of the financial year.

7.2 Monitoring

Respondents saw the area of monitoring as a very important aspect of the Action Plan, but again comments would suggest that respondents would welcome further detail and a greater emphasis on this section. One respondent suggested that the Action Plan should include the undertaking of a feasibility study, with costed options, into how best to establish a national system for monitoring and surveillance.

Inventory of HCV prevention measures

In general, respondents welcomed work to develop an inventory of Hepatitis C prevention measures. However, one respondent made the important point that HCV prevention interventions can cover an extremely wide range of activities. It may be difficult, as with AIDS prevention to disentangle activities which are targeted specifically at Hepatitis C prevention, from more general work which will impact on the prevalence of drug use in a community. A second respondent echoed this sentiment indirectly by requesting that such an inventory should cover the prevention practices of both NHS and non- NHS organisations, including the police.

Surveillance initiatives

Respondents considered action in relation to surveillance as very important. Again, there was a request for greater clarification in the Action Plan: "We are unclear if this action (4.2.c) relates to analysis and interpretation of existing data or the development of a new piece of research and therefore we would like more clarity on this point." Surveillance was seen to be crucial for informing service planning and delivery, and respondents felt that any such initiatives should be specifically geared for that purpose. One respondent said that the proposed collection of information on HCV test uptake would be particularly useful in that respect. The point was also made that many community surveillance studies to date have been carried out in Glasgow, and therefore, there was a need for studies in other areas around Scotland.

In general, respondents felt surveillance initiatives should monitor HCV incidence, prevalence and associated risk behaviours. Moreover, there was a feeling that these initiatives should be expanded to include not only surveillance among injecting drug users, but also among young offenders and other groups that may be at risk. It was also suggested that autopsy reports on drug-related deaths could be another useful source of information for monitoring Hepatitis C infection and evidence of cirrhosis.

Estimate future HCV burden in Scotland

Respondents welcomed work in this area, but felt that economic analysis should not simply consider the burden to the NHS, but also the costs to society of taking no action in screening people and managing Hepatitis C infection. Work should also be extended to provide projections of the numbers of potential candidates for liver transplantation over, say, the next decade or so.

Database of treatment care characteristics

Respondents were strongly in favour of action to establish and maintain a national database of treatment and care characteristics of people entering specialist Hepatitis C services. Such a database was seen as crucial for informing service delivery, and one respondent argued that such a database should include treatment success rates - not only so that patients can make a realistic appraisal of their chances of successful treatment, but also so "the Executive can determine cost effectiveness in the real world, rather than only on the basis of clinical trials."

Respondents recommended that anonymised data from any national database should be freely available to other professionals working across sectors, and that a restrictive process of applying to access such data should be avoided.

Several respondents felt that the Action Plan should give much greater emphasis to the continuation and on-going development of the existing Hepatitis C National Database, and called for a strategy and adequate funding for this purpose.

Other issues

There was a clearly a feeling that this section also needed to include action to monitor treatment provision, not simply prevention activity. One respondent suggested that the Action Plan should describe the mechanisms that could be used to monitor provision of hepatitis C treatment by NHS Boards and across Scotland. This individual suggested that important variables would include:

  • number of people diagnosed with hepatitis C
  • estimated total number infected with HCV
  • number who have been clinically assessed
  • number who have commenced treatment
  • number who have completed course of treatment
  • reasons identified for treatment non-concordance
  • number of people on waiting list for treatment
  • average time between treatment being recommended by clinician and patient starting treatment

7.3 Research

Again, respondents saw research as very important, and felt that a nationally co-ordinated approach to research would be valuable. However, in general, there was a feeling that the Action Plan should have provided more detail about possible research priorities. One respondent said, "The agenda for research is very vague: a demonstration project of some kind, even if with minimal funding, would have helped." This sentiment was not expressed explicitly by others. However, the sheer number of suggestions that respondents made in relation to possible research projects suggests that the Action Plan should perhaps have provided more detail about this. On the other hand, one other respondent clearly expected to be invited at a later date to contribute her ideas about research.

Based on the suggestions made by respondents, it would seem that the highest priority for research is in the area of prevention. Respondents wanted evaluations of the effectiveness and cost-effectiveness of prevention initiatives, especially in relation to the distribution of paraphernalia.

Secondly, the area of screening and testing was seen as a priority, and in relation to this, the main focus of research should be on assessing the effectiveness of different methods to identify former drug users, and encourage them to come forward for testing.

Third, the area of treatment and care was seen to be an important topic for research. Respondents particularly wanted to see evaluations of new community-based models of care.

Other suggestions for research concerned:

  • Evaluations of interventions to reduce maternal transmission of Hepatitis C
  • The development of an effective vaccine
  • An evaluation of the impact of the new blood-borne virus prevention funding formula.

A full list of all suggestions made in relation to research priorities is shown in Appendix A.

8. Conclusions

The consultation on the proposed Action Plan for Hepatitis C attracted a large number of responses from individuals representing a wide range of agencies and groups. Many respondents clearly had an in-depth understanding of issues related to Hepatitis C and other blood-borne viruses, and warmly welcomed the publication of the Action Plan. The view was expressed that action was urgently needed in this area in Scotland.

It is clear from this consultation that further work must be done on Scotland's Action Plan for Hepatitis C. Respondents were very much in support of the general aims of the draft Action Plan, but felt that the Action Plan lacked important detail for planning. A number of important issues had been omitted. Many respondents requested clarification about particular actions, and expressed the view that certain actions were vague or open to interpretation. Respondents wanted to see explicit targets and SMART objectives.

However, the main concern expressed by nearly every respondent was that, without sufficient funding, the publication of an Action Plan would fail to result in any significant change or improvement. Targets and objectives can be set, but they will not be met. Furthermore, respondents argued that any action to identify infected individuals, or to improve education and training among professionals, could potentially do more harm than good unless substantial new funding is made available to improve the accessibility of testing and treatment services.

This is a rather gloomy message. However, it is clear from the results of this consultation that there is some scope for improvement over the next few years, even without additional funding. This situation is far from ideal, but neither is it completely hopeless. There are many on-going initiatives in many areas which could be consolidated and better co-ordinated to meet the needs of those who have, or who may be at risk of acquiring Hepatitis C.

In addition, respondents have recommended the establishment of standards in many areas - standards for training and education of professionals, standards for drug treatment services, and standards for needle exchange. If these recommendations are accepted, work could begin immediately on this. The inclusion of Hepatitis C within the school curriculum could also be taken forward.

The creation of SMART objectives for the Action Plan will, in itself, make clear what can and cannot be achieved without additional funding.

In the meantime, it will be crucial for further work to be undertaken to quantify the need for additional resources. Respondents to the consultation have already clearly identified where the greatest needs for funding are. What is not clear, however, is the precise level of resourcing that is required. This information will be necessary if a case for increased funding is to be made to Scottish Ministers.

The economic analysis being undertaken by Health Protection Scotland to estimate future HCV burden of care is very important, and respondents made recommendations about how that work should be extended. However, there may also be some benefit from undertaking a national needs assessment to identify the costs associated with developing improved, community-based prevention, testing and treatment facilities. This work could be linked to an evaluation of the impact of the revised formula for allocating blood-borne virus prevention funding - a suggestion that was made by one respondent.

The mere publication of an Action Plan on Hepatitis C indicates a clear commitment by the Scottish Executive to tackle this problem. However, this commitment is undermined by the lack of funding attached to the Action Plan. The Scottish Executive will need to consider carefully what specific actions can be undertaken in the next few years to address the Hepatitis C epidemic in the absence of additional resources. To some extent, it will be possible for work in relation to Hepatitis C to piggy-back on existing actions in the areas of harm reduction, drug treatment and rehabilitation, sexual health and HIV. But, the results of this consultation would indicate that without a massive injection of targeted funding, the problems associated with Hepatitis C are only likely to get worse.

Appendix A: Respondents' priorities for research

Prevention

  • There was no mention of interventions that have been successful in reducing the transmission of Hepatitis C in other countries. We feel such a review should be carried out to assist development of the Scottish HCV prevention strategy.
  • Under "research", the following bullet point should be added: the need for research to provide evidence, including cost-effectiveness of the actual and relative benefits of supplying individual items of paraphernalia, e.g, citric acid. [There is no hard evidence at present for the benefit of the distribution of paraphernalia.]
  • Cost effectiveness of prevention initiatives; evaluation of expanded needle / syringe exchange schemes
  • Research needed into the effectiveness of providing paraphernalia other than needles and syringes on the transmission of HCV.
  • We welcome the APCG identifying priorities for research, and suggest that work needs to be done in the area of peer led education and NSE distribution, delivering needle syringe exchange in rural areas, and examining the role of mobile and outreach services in improving rural services.
  • It would be useful to evaluate which preventive approaches are most effective in discouraging drug use among the young.
  • A review is needed of addiction issues in relation to HCV - for example which prevention approaches are most effective in discouraging injecting?
  • We are aware of reports of an association between new hepatitis C infections and unprotected sex in HIV positive men, who have sex with men. We would suggest more research to quantify the additional risk faced by men who have sex with men and to identify effective preventive interventions.

Testing and screening

  • An assessment of the effectiveness of screening particular risk groups should be undertaken.
  • A pilot in one or more Health Boards to develop indicators to identify and test former drug users is required. The study of medical record indicators and their use at GP surgeries undertaken by Rosina Weightman, PCFT, Lothian would provide a good starting point.
  • In the light of new developments in testing - such as the use of saliva kits - it would be helpful if a review of the effectiveness of such tests and / or an algorithm as to when / how they might be used, was included as an action point.
  • There should be more research or a pilot into accessing former injecting drug users in order to encourage them to come forward for testing and treatment.

Treatment

  • Alcohol consumption in those with Hep C is known to increase risk of development of liver disease. More knowledge is required with regard to whether an abstinence-only approach is best, or what levels and patterns of alcohol consumption might be safe. This could be considered priority for research.
  • New ways of working should be developed and evaluated - for example, community outreach and shared care models with packages of support built into every stage of the patient journey.
  • Understanding the factors which predispose to lack of responsiveness to 'best available combination therapy' for HCV management; role for primary care practitioners in new, community based models of HCV care;

Maternal transmission

  • Much has already been done on a Europe-wide basis, through the European Paediatric Hep C Network, on the management of pregnant women with HCV infection and the follow-up protocols for their infants.
  • Research on interventions is needed to reduce maternal Hepatitis C transmission risk (about 6% from HCV carrier mothers). These endeavours may be given low impetus/priority if the epidemiology of maternally-transmitted hepatitis C is not sufficiently highlighted in Scotland's Hepatitis C action plan.

Other

  • Would like to think that the research will involve some Participatory Action Research.
  • Priorities for research should include: development of an effective vaccine;
  • An evaluation of the impact of the new BBV funding formulae is recommended and should be incorporated into the Action Plan on Hepatitis C.