The original Framework made clear the importance of a multi-agency approach to sexual health and blood borne viruses. To truly deliver on the Framework Outcomes in the long term will require the involvement of patients and service users, NHS Boards, Local Authorities, the Third Sector, academics, the media and the general public. The following chapters highlight where particular links are important but these comments do not reflect the entirety of the multi-agency engagement which is necessary for progress.
In particular, the integration of health and social care, the Scottish Government's ambitious programme of reform to improve services for people who use health and social care services, will present opportunities for tackling the priorities within the Framework. It is intended that integration will ensure that health and social care provision across Scotland is joined-up and seamless, especially for people with long term conditions and disabilities. For example, Health and Social Care Partnerships should support a patient-centred approach around hepatitis C that includes psychosocial interventions and should support work across health and social care including towards supporting the ageing HIV cohort.
The Public Bodies (Joint Working) (Scotland) Act 2014 places a statutory responsibility upon Health Boards, Local Authorities and Integration Authorities to actively involve the Third Sector in the planning and design of integrated health and social care services. The Third Sector is as key to success of this Framework as are the NHS and Local Authorities, both in terms of operational delivery and informing policy and practice. Third Sector organisations can also play an important role in the training and education of staff across organisations, in accessing very vulnerable and hard to reach people, linking them to local authorities and NHS, and in tackling stigma and in raising awareness. There are several good examples from across Scotland of partnership working with the Third Sector, but to ensure a consistent level of best practice more work will need to be done. The Third Sector remains a critical partner supporting the implementation of the Framework, working with people on broader, holistic prevention and support issues beyond clinical care.
Third Sector organisations can also work with clinical services to support patients before, during and after clinical treatment and may be commissioned to provide clinical services. In many cases Third Sector support is vital to individuals remaining on, and adhering to, treatment. Unless there are particular reasons not to involve Third Sector organisations they should be involved in local multi-disciplinary discussions about individual patients, assuming the necessary information governance approvals are in place. This is in line with the multi-agency approach articulated above. However it is clear that Third Sector organisations will vary, and NHS Boards may find it difficult to adopt a consistent approach. For this reason there could be value in considering whether more can be done to promote consistency and quality in the relationship between Third Sector organisations working the in the field of sexual health and blood borne viruses and commissioners. The Scottish Government will host a meeting with the Third Sector and NHS representatives to consider further what more can be done to ensure appropriate information sharing between the NHS and the Third Sector in the best interests of integrated patient care.
The Scottish Government funds Hepatitis Scotland and HIV Scotland as national Third Sector organisations with the role of supporting policy and practice. The Government will continue to fund both organisations for three years from 2015-16, but during this period will conduct a due diligence review on the operation and funding of these organisations beyond 2017-18.
The Framework recognises that many people affected by poor sexual health and blood borne viruses are vulnerable and will have multiple needs. The social inequality of these vulnerable groups will be particularly pronounced in a time of recession, welfare reform and poverty. Community Planning Partnerships (as well as Health and Social Care Partnerships/Integration Authorities) have an important role and issues of poor sexual health and blood borne virus infections should be part of local plans. The main issues are well understood, including but not limited to: homelessness, addiction, alcohol use and offending, contact with the criminal justice system, violence against women and girls and sexual exploitation. But more recent issues such as new psychoactive substances, the influence of social media and technology, and the sexual health of older people and those with long-term disabilities also need to be addressed.
NHS Boards, Local Authorities and Third Sector organisations should ensure interventions continue to be targeted towards particularly vulnerable groups, improving awareness of those with multiple vulnerabilities and in recognition of the risk of increased inequalities emerging as a result of wider financial challenges. Local planning structures across the NHS and Local Authorities should recognise the importance of these groups in structured responses to the needs of local populations.
Patient and Service User Involvement
The Framework recognises the importance of engaging patients and service users in the design of sexual health and BBV services at local and national level. Patient involvement is core to good practice and should not be considered optional. Direct patient involvement is important but can be challenging. Third Sector organisations can act as facilitators or proxies where it is not possible to secure direct patient involvement, but it should be recognised that people who engage with Third Sector organisations may be different from those who would engage directly.
Both Hepatitis Scotland and HIV Scotland as national patient and policy organisations undertake patient involvement activities which provide a mechanism for individuals living with hepatitis C and HIV to feed into national policy. The Scottish Government will work with both organisations, NHS Boards and other Third Sector organisations to formalise national patient involvement groups as part of the Framework network structure. Both Hepatitis Scotland and HIV Scotland are able to provide tools and support to NHS Boards, Local Authorities, and Third Sector organisations wishing to improve their local involvement strategies. This work should contribute to, and not replace the duty of NHS Boards and Local Authorities to continue their local engagement.
Drug and Alcohol use
There is no doubt that addiction and substance misuse - including alcohol - continue to be drivers of behaviour which can put people at risk of poor sexual health and BBV infections. Young people and other vulnerable groups may be particularly affected. It is also true that living for a long time with a BBV can have a psychological impact, in particular when there have been problems with treatment or where treatment has failed, and this can lead to addictive behaviours. As well as potentially being a result of addiction, BBV infection can lead to people being more vulnerable to alcohol and/or drugs misuse.
Emerging issues in the field of substance misuse, including new psychoactive substances (NPS) and 'chemsex', reflect the fact that this is a continually evolving field. The Scottish Government has clear national policies on alcohol and problem drug use and Alcohol and Drugs Partnerships should plan interventions and services in line with these documents, supporting recovery from addiction. There are however opportunities for addiction services and other service providers to support the Framework Outcomes and vice versa. For example Injecting Equipment Provision (IEP) services have been established and funded to minimise the risk of transmission of BBVs through sharing of needles, but such services also provide an excellent gateway for information for people who inject drugs (PWID) and a route into care and support as part of a stepped pathway to recovery.
A related, important issue is the use of injectable performance and image enhancing drugs (PIEDs). There is a clear BBV risk related to the injecting behaviour associated with PIEDs, but anecdotal reporting from services in Scotland suggests that sexual behaviour of people who use PIEDs may also be higher risk. Services working with people who inject PIEDs therefore need to work in a holistic manner ensuring condoms and sexual health advice are available and offered at every transaction, as well as providing injecting equipment.
A similar important emerging issue is that of new psychoactive substances. Recent statistics reflect the significance of NPS. Whilst NPS use in Scotland, and the number of deaths where NPS is the only substance present in a drug-related death, is relatively low, 98.5 per cent of NPS-related deaths recorded between 2009 and 2013 involved polydrug consumption, typically combinations of NPS, opioids, alcohol and benzodiazepines. There are recognised issues in some parts of Scotland relating to the injecting of NPS, and the use of NPS is recognised as a potential driver of risky behaviours, both in relation to injecting and sexual behaviour. It is also important to recognise that NPS users may present different usage patterns and different cohorts to those traditionally dealt with by drug services. Services must evolve to meet new and changing needs and NHS Boards should develop clear pathways managing the interface between substance use and sexual health.
There has been significant reform to the welfare system by the UK Government since the publication of the first Sexual Health and Blood Borne Virus Framework document. Anecdotal evidence is clear that changes to benefits and welfare have had an impact on people in Scotland infected with HIV and hepatitis C. It can also have a detrimental impact on service users' families and children. In some cases benefit changes have made it more difficult for individuals to access or continue treatment, thereby further impacting on their ability to work and contribute to society.
HIV Scotland and Hepatitis Scotland have published a report on the impact of welfare reform on people living with HIV and hepatitis in Scotland. The report concluded: "the welfare reforms being implemented at a UK level are not appropriate in a Scottish context, and not at all suitable for people with blood borne viruses. The reforms are causing significant uncertainty and anxiety, worsening the mental and physical health of people in grave need, and adding to the burden carried by specialist services that are already stretched and oversubscribed." These impacts of welfare reform are unlikely to be limited to those affected by BBVs - they may also have an impact on those affected by poor sexual health.
The Smith Commission report on the further devolution of powers to the Scottish Parliament made recommendations about the further devolution of powers relating to welfare and benefits. The Scottish Government will give careful consideration as to how best to ensure that new powers are appropriate for the Scottish context, tailored to the needs of individuals and will do what it can to make the system fairer and simpler. Until these powers are devolved the Scottish Government will oppose all further cuts to the welfare budget and reforms which undermine the provision of care and support for vulnerable people.
The first Framework document said little about research. Scotland's size and the data systems used in the NHS, as well as the high quality clinical and academic sectors within Scotland, mean that there are significant opportunities for Scotland to contribute to national and international literature on sexual health and blood borne virus issues. Scotland already has an impressive record of research and publication in some areas but there is the potential to do more, and to make use of existing data sources such as the National Sexual Health system (NaSH). While there have been recent improvements made to NaSH, there is still more that can be done to see the system deliver to its full potential.
The challenge, for clinicians, managers and academics is finding the time and capacity to make positive steps towards research, and to bid for grants and funding. Over the last five years the Scottish Government has provided funding for specific projects, including the MSM Prevention Needs Assessment by NHS Greater Glasgow and Clyde and NHS Lothian, research by the MRC/CSO Social and Public Health Sciences Unit, University of Glasgow on later and repeat termination of pregnancy, and on media reporting on sexual health and BBVs. The Scottish Government will continue to fund particular research projects when able to do so, but there is also a need to build capacity to enable other sources of funding to be accessed and for existing research to be shared across Scotland and more widely. The Scottish Government will therefore fund a Framework research manager post to co-ordinate research across the Framework, to support the NHS and other partners in accessing funding and grants, and to work with networks to identify research priorities, to collate and share evidence of what works, and to develop a research strategy for the Framework. This will complement work being done to develop and support a national drug research strategy due to be published in the autumn.
In addition to this new post, the existing National Monitoring and Assurance Group will extend its remit into research and the chair, membership and name of the group will change to reflect this new role. Representatives of all networks will have membership of the group and will contribute to the generation of the Framework research strategy, focusing particularly on sexual and reproductive health and HIV (while maintaining the world-leading standard of research on viral hepatitis). Meetings of national networks for lead clinicians in sexual health, HIV and viral hepatitis will have research and audit as permanent agenda items, to provide a forum for engagement for the research manager.
Indicators and Monitoring
Some stakeholders involved in the work of the Framework have reported that some of the Framework Indicators are too clinically focused and do not reflect the reality of people's lives, nor the range of factors relevant to sexual health and BBVs. This has led to many aspects of the Framework's implementation being perceived as being the sole responsibility of the NHS.
While health services are very important, finding work, attaining education and living in a community without prejudice are just as important to the health and wellbeing of people - health in the broadest sense. This is very much recognised within this update to the Framework, and it is also recognised that more work is needed to further update and refine the Outcome Indicators, not only to reflect newly emerging and important issues, but also to better reflect the non-medical aspects of supporting the delivery of the Outcomes. There will undoubtedly be challenges here, as some of the things we wish to capture and monitor may not be easily measured. However this will be considered in detail by the National Monitoring and Assurance Group. Furthermore the Framework Indicators should not be seen as fixed for the life of this update. The expectation is that Indicators will be reviewed and updated regularly, in consultation with the networks in place.
Supporting the Framework
The implementation of the first Framework was supported by a range of national networks. These networks will continue to mature as forums for debate and discussion, and as a mechanism to exchange best practice. The Scottish Government and Health Protection Scotland will continue to oversee and input into these networks as appropriate. The National Monitoring and Assurance Group will continue, with a new additional focus on research as discussed above.
The Scottish Government employed two National Coordinators to support the first Framework - a National Coordinator for HIV and Sexual Health and National Coordinator for Viral Hepatitis. Now that the Framework approach is well-established, these roles are no longer needed and the resources associated with the National Coordinators will be released to be reinvested in other Framework activity.
The Framework as a whole will continue to be a priority for Scottish Ministers, and the National Sexual Health and Blood Borne Virus Advisory Committee, chaired by the Minister for Public Health, will continue to meet at least twice a year.
Over the past four years National Coordinators based in Scottish Government carried out local areas visits to all Boards on an annual basis. There has been significant progress over this period and these routine annual visits are no longer required. Instead the role of the national network of Executive Leads will be strengthened to include a responsibility for monitoring progress and reporting on the national indicators for the Framework. The Executive Leads will work with Scottish Government to ensure that all parts of Scotland are continuing to deliver the Framework Outcomes. The remit of the Executive Leads will be updated to reflect this change of role. The Scottish Government will also retain the option of undertaking local visits to Boards to monitor progress or in response to any specific concerns.
Email: Lynsey Macdonald
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