Section Two: Specific Issues, Actions and Responsibilities
Prevention, Diagnosis, Treatment and Care: Improved co-ordination of HIV services, standards and guidelines.
Effective links between prevention, diagnosis and treatment and care are crucial in the management of HIV. Improving access to, and the provision of, prevention, diagnostic and treatment and care services can contribute to a reduction in the transmission of HIV and a longer survival time for those living with HIV9.
Treatment and care services for HIV infected persons in Scotland, generally, are of a very high standard but, in the context of the ever-increasing complexity of managing an aging, multi-ethnic, urban-centric and rapidly growing cohort, some inconsistencies in access to and provision of optimal services are evident across NHS Boards 1.
The lessons learned from the measures taken to reduce HIV transmission among injecting drug users and between HIV positive mothers and their babies should be translated to support access to and the provision of HIV prevention and diagnostic services for high risk groups, i.e. men who have sex with men ( MSM) and persons originating from areas of high prevalence, particularly African countries, whilst also considering the needs of those in the general population.
The sexual health needs of people living with HIV should be seen as an integral part of their HIV treatment and care. The application of the NHS Quality Improvement Scotland ( QIS) standard on sexual healthcare for people with HIV should ensure this need is met.
When undertaken effectively, HIV prevention activities such as exploring social and sexual cultures, diagnosis and disclosure of HIV status, shared responsibility for protection and the challenging of HIV stigma and discrimination concentrate on influencing sexual attitudes, values and behaviour. This requires co-ordinated efforts across health, social care and voluntary sectors in both sexual health and HIV specific services. The particular prevention activities undertaken will be dependent on the context, area and population within which they are delivered and as such are not specifically listed within this Action Plan.
The great majority of those infected or at high risk of infection reside in Scotland's largest urban areas, particularly within the Greater Glasgow and Clyde and Lothian NHS Boards. As such, these Boards have wide-ranging and frequent experience of HIV and invaluable expertise particularly around effective prevention activities and interventions. It is essential that those NHS Boards with smaller populations of people infected with HIV or at high risk of HIV transmission are equally able to provide a high standard of prevention, treatment and care and support services.
Regional HIV Facilitation Teams
The Scottish Government will issue guidance which will inform the role and remit of Regional HIV Facilitation Teams. The lead HIV facilitators within the teams will be senior posts, reflecting the importance of this role in implementing the Action Plan and in addressing the needs of NHS Boards and their partners.
The regions will span NHS Boards as below:
- East for Lothian, Fife, Borders and Tayside
- West for Greater Glasgow and Clyde, Dumfries and Galloway, Ayrshire and Arran, Forth Valley and Lanarkshire
- North for Grampian, Highland, Western Isles, Orkney and Shetland
However, NHS Boards have the option to express an alternative preference if they can evidence, in practice, a different regional collaboration.
The Regional HIV Facilitation Teams will
- Be a supportive and collaborative resource which will support Boards in providing the leadership required for addressing HIV in Scotland
- Have an essential role in ensuring the implementation of the NHSQIS Standards for HIV prevention, diagnosis, treatment and care and in monitoring progress on an ongoing basis.
- Work with, amongst others, Sexual and Reproductive Health, Local Authority and Social Care, Voluntary, Paediatric, Mental Health, Dentistry, Scottish Prison Service, General Practice and service user sectors.
- Create effective partnerships with Primary Care and provide shared support and learning where specialist services are not easily accessible.
- Be responsible for supporting NHS Boards in their implementation of the Action Plan, and in monitoring the progress of implementation including guidelines and other "Best Practice" approaches to prevention, testing, treatment and care and support, through information sharing and collaboration. 1
- Access the support of statutory and voluntary organisations as appropriate and facilitate multiagency and professional disciplinary working at local, regional and national levels.
- Provide support for the development and subsequent implementation of a generic Patient Management System ( PMS) (if appropriate).
The provision of services for paediatric immunology and HIV in Scotland has been considered separately and a national Managed Clinical Network ( MCN) has been proposed in order to improve treatment and care for children and young people with HIV across Scotland.
The Regional HIV Facilitation Teams will link with the MCN whilst also investigating the potential for a national network for children and young people infected and affected by HIV in Scotland in order that best practice, expertise and information can be shared on a Scotland-wide basis.
The developments above will help to ensure equitable and optimal prevention, treatment and care and support for all those at risk of HIV and those living with HIV in Scotland.
Guidance developed by the Scottish Government will provide further, more detailed information on the role and remit of the teams, on how they will interact with local networks and on the input of those sectors integral to addressing HIV in Scotland, such as Primary Care, Local Authorities and the voluntary sector.
An identified resource whose responsibility spans across NHS Board boundaries will be established to provide support and to facilitate the sharing of experience and expertise between the Boards so that they can most effectively address the prevention and treatment and care needs of their populations.
Standards for HIV Prevention, Diagnosis, Treatment and Care, as part of the NHSQIS Implementation and Improvement Programme for HIV, will be developed and implemented.
A generic Patient Management System ( PMS) involving Scotland's principal HIV Treatment Centres will be investigated and, if appropriate, developed and implemented.
These actions will, by improving the co-ordination and effectiveness of HIV prevention activities, by ensuring statutory and voluntary agency working and by providing a supportive sharing mechanism for the Boards ensure that Prevention, Diagnosis, Treatment and Care service provision for HIV infected persons and those at high-risk of acquiring infection throughout Scotland are optimal and equitable.
Prevention, Diagnosis, Treatment and Care: Improved planning of HIV services and reducing the cost of antiretroviral therapy ( ART)
By 2012, the number of people living with HIV and requiring specialist care is likely to increase by 5-13% (some 150-350 persons) per year 1 and the average age of individuals living with HIV will increase over time as effective drug regimens sustain and improve their quality of life.
Evidence indicates that early initiation of anti-retroviral therapy ( ART) is likely to lead to an increase in the number of people requiring therapy in the long term. The impact of these changes in terms of therapeutic and care costs is likely to be considerable and NHS Boards should endeavour to plan for this likely increase.
Prevention activities across Scotland can be inconsistent and in some instances are neither evidence informed nor targeted at those who are most at risk of infection 10. The NHS Boards and regional HIV facilitation teams, using the knowledge generated via Action 12, should undertake or update a regional needs assessment. The needs assessment should include service mapping and identifying effective HIV prevention activities for those at greatest risk of HIV infection to inform NHS Board clinical planning. It is essential that planning for 2011-2014 incorporates detail on the resources, including costs, required to address the needs of people living with HIV, including those of children and young people
The needs assessments should utilise NSHACHIV Prevention: Report and Recommendations 11 in order to identify appropriate and effective prevention activities and interventions for MSM.
In addition, needs assessments should take into account increases in HIV testing and the prevention of onward transmission and should consider underlying factors such as the issues of stigma, mental health and wellbeing, homophobia, racism, substance misuse and cultural influences/belief systems.
Opportunities should be taken to 'normalise' HIV testing within all populations to address late diagnoses amongst those not considered to be at high risk of HIV infection and to reduce the issues of stigma around HIV testing and diagnosis.
In line with the BHIVAHIV standards and guidelines, routine testing should occur for patients who present with "early sentinel conditions" 12,13 in order to "recognise infection earlier in its course", to detect suspected primary HIV infection and to help prevent late diagnosis. This should apply to children as well as adults.
These actions must lead to an increase in uptake of HIV testing, especially among MSM and persons originating from areas of high prevalence, particularly African countries, in addition to a lowering in the numbers who remain undiagnosed.
An opportunity to reduce the cost of HIV treatment will be assessed through the improved procurement of ART. By block purchasing such drug treatments, savings can be made to ensure that the above increased demand is at least, in part, offset.
NHS Board plans to maintain and improve prevention, diagnosis and treatment and care services and initiatives will be developed and implemented, using the information gathered from the regional needs assessment.
The potential for the block purchasing of anti-retroviral therapy ( ART) to reduce cost will be assessed.
Actions four and five will enable NHS Boards to determine the resources and developments required to address the current inconsistencies in HIV prevention activities across Scotland and the needs of people living with HIV. The implementation of these actions will promote effective prevention activities, the optimal treatment and care of people living with HIV, including children, and will lead to a potential reduction in the cost of ART for NHS Boards.
Treatment and Care: Improved access to specialist HIV care
Many factors influence the engagement of people living with HIV with both clinical and support and care services. A significant number of infected persons (upwards of 1,000 individuals) diagnosed in Scotland have not entered or have defaulted from, specialist care services. The reasons for this and how they might be addressed are unclear.
An investigation by statutory and voluntary organisations on the individuals who have engaged for diagnosis, support and care but not for treatment and clinical follow up is required. The investigation will look at issues such as those around the stigma suffered by those living with HIV that may have the potential to deter individuals from accessing services.
An investigation into the reasons why some people living with HIV do not attend specialist clinical services will be undertaken.
The findings of the investigation will determine how to attract and retain in specialist clinical care those individuals who do not currently access services.
Improving HIV transmission and risk behaviour surveillance
Existing surveillance systems involving MSM and persons from areas of higher prevalence, particularly African countries, are limited in terms of geographical coverage, accurate detection and/or estimation of new HIV transmissions and the ability to evaluate the impact of interventions designed to prevent high risk behaviour and HIV infection.
Existing systems should be reviewed and where necessary further developed. New systems, including the potential application of sophisticated laboratory tests to, for example, identify the recency of infection among new diagnoses, should be established, if required.
Systems to monitor risk behaviours and new HIV infections among persons at highest risk of acquiring infection will be reviewed and, if appropriate, developed and implemented.
This action will lead to an improved understanding of the epidemiology of HIV transmission and HIV related behaviour. These data will inform the planning of services and the development of guidance (See Actions 4 and 9-10).
Preventing HIV Transmission among MSM and persons originating from high prevalence, particularly African countries.
Given that HIV disproportionately affects key groups of people it is essential that prevention activities are focussed where they are most likely to have the highest impact in reducing HIV transmission and improving HIV-related sexual health.
Accordingly, in Scotland, such activities will focus on
- All persons living with HIV
- Persons originating from high prevalence, particularly African countries.
However, NHS Boards should also ensure that this focus is not to the detriment of prevention activities and testing in the general population.
From data currently available, it is evident that HIV transmission is occurring in Scotland particularly among the MSM community; in 2007, 58% of MSM reported that they had probably acquired their infection in Scotland. In contrast, 12% of heterosexually acquired infection was presumed to have been acquired in Scotland. The majority of heterosexually acquired infection is among those who acquired their infection in high prevalence areas, particularly in Africa (refer to the HIV Action Plan Epidemiology supporting paper).
To raise awareness of HIV and support future interventions targeting MSM, social marketing materials will be developed.
This targeted work is being delivered in the context of wider action in the Respect & Responsibility 2008-2011 14 programme to improve HIV awareness among the general population.
Guidance and advice exist on preventing and reducing the transmission of HIV among MSM. 2 Expertise in Scotland exists to review this guidance and to inform the development of new guidance.
Guidance produced will provide advice for NHS Boards, working with the Regional HIV Facilitation Teams, on how to work to prevent further transmission of HIV among MSM and persons originating from high prevalence, particularly African countries, in Scotland, whilst also recognising the needs of the generic population and people living with HIV in preventing onward transmission. NHS Boards, with the Regional HIV Facilitation Teams, will be responsible for the implementation of the guidance and should tailor interventions to reflect local and regional circumstances.
The development and implementation of social marketing materials for MSM.
Existing guidance on prevention of HIV transmission in MSM will be tailored to national/local circumstances. New guidance on interventions to prevent and reduce HIV transmission in MSM will be developed, whilst also recognising the needs of people living with HIV in preventing onward transmission.
Guidance will be implemented at a local and national level.
Existing guidance on prevention of HIV transmission in persons originating from areas of high prevalence, particularly African countries, will be tailored to national/local circumstances. New guidance on interventions to prevent and reduce HIV transmission in persons originating from areas of high prevalence, particularly African countries will be developed, whilst also recognising the needs of people living with HIV in preventing onward transmission.
Guidance will be implemented at a local and national level.
These actions will result in increased awareness of existing and future evidence and guidance on prevention which will contribute to a reduction in the rate of new transmission of HIV among MSM and persons from areas of high prevalence, particularly African countries.
Improving Education and HIV Awareness Raising
Knowledge and guidance on interventions associated with the prevention, diagnosis and treatment and care of people living with HIV is changing constantly. Due to ART, people with HIV are living longer, resulting in more complex health needs.
It is important, therefore, to ensure that gaps in knowledge among the HIV-related workforce, including primary care teams responsible for managing non- HIV-related conditions in HIV infected and sexually active persons, are addressed. This action is also intended to strengthen related activity within the Respect and Responsibility Outcomes 2008-11. 14
Staff should be informed and updated through regular training and knowledge events. The HIV-related workforce will vary between NHS Boards. Regional HIV Facilitation Teams should work to support the Boards and ensure that workforce planning approaches accurately identify those who require education and training.
These training and knowledge events must:
- Ensure an understanding of up to date epidemiology of HIV
- Ensure familiarity with issues in high risk groups, notably in men who have sex with men ( MSM) and in African communities
- Ensure an understanding of the prevention and testing activities that should be undertaken in high risk groups and in the general population
- Ensure an understanding and familiarity with issues around stigma and discrimination, in addressing prevention and ensuring diagnosis as well as its effects on those living with HIV.
- Demonstrate commitment to equality and diversity.
This should also be informed by a new or recently developed needs assessment, existing training initiatives and accredited training programmes.
An exploration of the educational and training needs of the HIV related workforce will be undertaken. Priorities will be identified and educational solutions developed and implemented.
Young People, Education and HIV Awareness Raising
Young people, particularly those at high risk of HIV infection such as young MSM, need to be informed and updated on risks associated with HIV transmission.
Rather than being an action within the HIV Action Plan, this aspect of education is part of the Respect & Responsibility Outcomes 2008-201114 which address the sexual health and relationships education ( SRE) needs of young people, and includes HIV.
Schools, further education, community and other settings which engage with vulnerable young people must input into the development of guidance and support materials and deliver these as part of the commitments to the Respect & Responsibility Outcomes 2008-2011 14 programme. In addition to awareness raising, this education should also tackle stigma and discrimination issues.
This action will lead to the HIV-related workforce, including those working in Primary Care and other non-specialist services, being more informed about current HIV knowledge and skills.
HIV Resources within BBV Prevention budgets; monitoring and accountability.
Many NHS Boards have been using their BBV Prevention budgets for HIV testing purposes. Greater emphasis is required on the importance of diagnosis in helping prevent onward transmission.
Whilst promoting testing as an essential part of HIV prevention, NHS Boards should also ensure that BBV prevention monies are used for other HIV prevention activities and interventions. The Scottish Government will carry out a short evaluation in order to obtain information on HIV prevention services in Scotland and to understand BBV Prevention spend. NHS Boards should identify the most appropriate prevention activities for their population thorough the needs assessment process (Action 4).
Recommendations on HIV prevention in MSM specifically are available in the NSHACMSM Subgroup Report 11. NHS Boards should use this resource when identifying effective prevention activities for MSM.
The Scottish Government will commission an evaluation of BBV prevention services in Scotland.
The Scottish Government will review the existing BBV Prevention budget spend and produce guidance on the recommended future spend of the BBV Prevention budgets. NHS Boards will provide information on current and proposed future annual spend of the BBV Prevention budget against local priorities as informed by the regional needs assessment (Action 4) the outcomes of Action 12 and Scottish Government guidance.
Improved budgetary accountability will lead to a more efficient use of BBV Prevention funding.
Improving National and Regional/Local Co-ordination
To ensure that the actions are delivered efficiently, effectively, to timescale and are governed appropriately, national and local accountability structures will be developed.
An HIV Action Plan Governance Board ( HIVAPGB), comprising all NHS Board HIV Executive Leads and representatives of national agencies responsible for delivering specified actions (see Appendix 4) will be established to monitor the progress and performance of actions, financial spend and to identify and address high level risks and issues.
NHS Boards, HIV Executive Leads and national agencies (refer to Appendix 4) will be directly accountable to the Scottish Government for the delivery of the Plan, reporting to the HIV Action Plan Governance Board ( HIVAPGB) which will meet biannually. Once the Regional HIV Facilitation Teams are established, NHS Boards will report to the HIVAPGB through their Regional HIV Facilitator. Reporting on financial spend will be direct to the Scottish Government for all organisations. An HIV Action Plan Implementation Group will also be established to support programme delivery, meeting more frequently as a subset of the HIVAPGB with respective NHS Board and national organisation leads as required.
Communication links will be established across the entire programme of work as outlined in Appendix 4. It will be essential to link with associated national action plans, committees and networks involved in sexual health, specifically the National Sexual Health and HIV Advisory Committee ( NSHHAC) and other areas where appropriate. Communication links with local networks will also be established through NHS Board HIV Executive Leads supported by Programme Management and Regional HIV Facilitation Teams.
The HIV Action Plan will be delivered using a Programme Management approach, supporting those involved, notably the Regional HIV Facilitation Teams. The Scottish Government, NHS Board HIV Executive Leads, Regional HIV Facilitation Teams and specified national agencies are responsible for delivering identified actions (as cited in Appendix 4).
Accountability structures will ensure the actions are delivered efficiently, effectively and to timescale.