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.