Scottish Government

EXECUTIVE SUMMARY

Introduction

1. The Review of HIV Scotland is part of a rolling programme of external reviews of organisations which are required under the Scottish Compact of Good Practice Guide "Advice on Scottish Executive relations with the voluntary sector" ¹. HIV Scotland has welcomed the Review and has cooperated fully throughout the process.

2. The Review of HIV Scotland was commissioned to:

• Examine HIV Scotland's aims, objectives and organisational focus.
• Assess HIV Scotland's short and long-term strategic planning processes, management and organisational systems and its dissemination and communication strategy.
• Assess the organisation's contribution to developing and delivering the Scottish Government's forthcoming HIV Action Plan, and more generally to relevant Scottish Government policy.
• Determine the effectiveness of HIV Scotland's interventions and work in terms of reducing the number of people in Scotland with HIV and more generally health outcomes of the target group.
• Identify key organisation strengths which can be built upon, and propose solutions to any weaknesses which need to be addressed.
• Explore HIV Scotland's performance in providing value for money in relation to the funding made available by the Scottish Government.

Methodology

3. The Review team engaged with HIV Scotland Board and staff using face-to-face and group interviews. Stakeholders were drawn from two groups: professionals representing the views of their agencies and professionals and non-professionals who wished to contribute personal views informed by participation in events, projects or consultations facilitated by HIV Scotland. These stakeholders were engaged using face-to-face interviews, telephone interviews and on-line questionnaires. All participants received an information leaflet about the Review which explained the approach and how reporting and anonymity would work.

HIV in Scotland

4. In 2006, 2,416 HIV infected persons were receiving HIV specialist care in Scotland; the majority of the cases in specialist care attended for treatment in Lothian (986), Greater Glasgow & Clyde (778), Tayside (188) and Grampian (160) NHS Boards. ²HIV also disproportionately affects key groups of people, notably in men who have sex with men ( MSM) and in African communities. As the HIV Action plan states, in recent years we have seen a substantial rise in the number of cases of HIV. While part of this rise can be attributed to an increase in testing, we know that there is also a true rise in the number of new transmissions in Scotland.

5. Recent statistics ³ about HIV Infection and HIV testing tell us that:

• In 2008, 412 new cases of HIV were identified in Scotland; this represents a 9% decrease on the 452 cases reported in 2007.
• In terms of most affected groups or communities: There were 155 new diagnoses amongst gay, bisexual or men who have sex with men ( MSM), 204 new diagnoses amongst heterosexual men and women who are not injecting drug users and 19 new diagnoses amongst injecting drug users.
• There is an increased uptake of HIV testing; between 2004 and 2008 there was a 71% increase in the numbers of persons taking an HIV test.

About HIV Scotland

6. HIV Scotland, a registered charity, is an independent voluntary sector agency located in Scotland. HIV Scotland's aims are:

• To provide effective leadership in policy and strategic development and interventions within the HIV sector in Scotland.
• To ensure HIV prevention priority is focused on communities most at risk and that support is prioritised for groups disproportionately affected by HIV.
• To represent the views, benefits and values of the voluntary sector's response to the epidemic.
• To ensure the development within Scotland of capacity, activity and resources that respond to current evidence, policy and epidemiology around HIV.

7. The agency states these aims are met by delivering these activities:

• Advocating for HIV issues in Scotland and building strategic partnerships.
• Being active in the development of evidence-informed government policy.
• Building capacity and coordinating networks within the Scottish HIV sector.
• Resourcing the HIV sector with training, information, promotional material, websites and campaigns.

8. The Scottish Government is HIV Scotland's main funder and provides funding under Section 16b of the NHS (Scotland) Act.

9. The Board meets quarterly and the agency hosts an annual general meeting. As a company HIV Scotland has provision for two classes of members: ordinary members (who must be voluntary or self help bodies working in the field of HIV and who can vote at an AGM) and associate members (who can be other individuals but who do not have a vote). Those agencies represented on the Board are ordinary members. There are currently no other ordinary members and no associate members.

10. HIV Scotland activities are described as focusing on partnership working and resourcing the HIV sector, particularly the voluntary sector, to respond to the epidemic. The agency has established two national health improvement projects to support delivery of these commitments. Healthy Gay Scotland ( HGS) has delivered several important projects but activity on several current initiatives has stalled. The African Minority Ethnic HIV Project ( AMEHP) has successfully supported African communities in Scotland to engage with HIV issues; clarity is now required about how its work interfaces with that of Waverley Care.

11. HIV Scotland also identifies other key areas of activity including national policy work, training and responding to requests for views on a range of HIV related issues. While successfully delivering in terms of support for the development of the HIV Action Plan for Scotland ⁴, capacity to deliver other areas of work has been impacted upon by staff vacancies and poor partnership working.

An examination of aims, objectives and organisational focus

Agency focus

12. Stakeholders identify the need for HIV Scotland to remain flexible and responsive to emerging issues and challenges. There is agreement that HIV Scotland should retain its clear organisational focus on HIV. To maximise effectiveness HIV Scotland needs a set of aims and statements about activities which are negotiated and agreed with a membership base as well as with Scottish Government as funders.

Providing effective leadership

13. While Government and statutory sector agencies value HIV Scotland's role as a representative voice of the voluntary sector agencies from that sector question how this can be achieved in the context of relationships which some describe as poor. There are concerns that HIV Scotland seeks to lead the sector but does not adequately represent its views. HIV Scotland Board and staff recognise difficulties and are committed to addressing them.

Ensuring a focus on communities most at risk

14. The agency has successfully focused attention on communities most at risk with the work of HGS and AMEHP; however the needs of other groups and communities should also be considered more explicitly.

Partnership working and advocacy

15. The agency recognises that it has been involved in collaborations but has not created strategic partnerships. Stakeholders identify a need for the agency to re-build a membership base, and improve relationships with voluntary sector stakeholders. Stakeholders want outreach and community development to be part of HIV Scotland's remit. Developing and supporting models for advocacy and representation with and on behalf of people living with HIV should be included in their remit.

Engagement with policy

16. The knowledge and experience of HIV Scotland gained over the many years during which it has monitored and understood the impact of the epidemic on Scotland is recognised as a key strength. From this strong knowledge base HIV Scotland has informed national policy, particularly the HIV Action Plan for Scotland. The agency's relationship with Scottish Government is strong. While this is welcome stakeholders also want the independence of HIV Scotland to be clarified.

17. The agency has evidenced its understanding and influence on policy relating to HIV prevention, treatment and care but external stakeholders identify that it should extend its policy reach and influence to a fuller range of policy concerns which also impact on the lives and wellbeing of individuals and communities affected by HIV.

Supporting and resourcing the HIV sector

18. Historically HIV Scotland's focus has been to inform and support the voluntary sector's response to HIV issues. However, contributors identify there is now a more broad-based cross-sectoral service landscape within which HIV Scotland must operate.

19. HIV Scotland Board and staff agree that some projects in the HGS work stream need to be reviewed, HIV Scotland's role renegotiated and trust re-invested back in partners.

20. Stakeholders suggest that HIV Scotland could provide training and be more proactive in terms of supporting others in the development of information provision, promotional materials, websites and campaigns.

Planning, management and organisation

21. The Review considers HIV Scotland's approach to management, planning and organisation systems and issues around dissemination and communication about the agency's role and activity. A number of problematic issues have been identified.

22. The relationship between the Board and the Chief Executive is difficult and deteriorating. There is a mutual lack of trust in each other's capacity to fulfil the roles required. The Board is engaged in, and feels overwhelmed by, day-to-day problems and does not focus on strategic issues and partnerships. There are no formal staff support and supervision structures in place nor annual appraisals.

23. Working groups established to steer HIV Scotland's projects HGS and AMEHP no longer meet. This is viewed by stakeholders as indicative of a lack of commitment by HIV Scotland to engage with partner agencies. Stakeholders and the agency itself recognise that work done in silos can mean that opportunities for work across populations might be lost.

24. External stakeholders express concerns about a lack of communication about HIV Scotland's work. HIV Scotland Board and staff recognise the need for improved communication.

25. Prior to this Review a temporary member of HIV Scotland staff conducted work which explored issues around communication and partnership working. A report was produced in April 2009. However, this work has not been progressed. Board members report that they have been poorly informed of its purpose or progress. Some staff members appear to have found the process and product unsettling. The Review team find the work to be insightful and positive and has a role to play in considerations of the agency's communication and work-planning.

Contribution to Scottish Government policy

26. The resourcing by Government of a national HIV organisation is seen by external stakeholders and HIV Scotland Board and staff as a strong commitment to continuously improving policy and supporting the HIV sector. Stakeholders also recognise that HIV Scotland's work over many years has contributed to raising knowledge and awareness amongst many agencies about HIV and its impact in Scotland; thus informing current debates and developments.

27. Agency contributions to the recently published HIV Action Plan for Scotland have been a significant area of work. HIV Scotland's Chief Executive is identified by contributors as being particularly well informed, measured and, where appropriate, challenging. Some voluntary sector stakeholders however, report dissatisfaction with the efforts HIV Scotland has made to engage them and communicate their concerns.

28. HIV Scotland, via the Chief Executive, has been integral to the Scottish Public Health Network treatment and care needs assessment for people living with HIV. The findings of the process include an identification of the role of the voluntary sector in these key areas. HIV Scotland has also undertaken a Needs Assessment project on behalf of NHS Forth Valley, reporting in 2009 ⁵. HIV Scotland Board and staff view this work as a model for further agency activity in support of NHS Board's responses to the HIV Action Plan for Scotland.

29. The agency was involved in the development of Scotland's sexual health strategy 'Respect and Responsibility'. HIV Scotland's Chief Executive played a role in both the main Reference Group for developments and in two sub groups looking at the needs of gay and bisexual men and men who have sex with men ( MSM) and at HIV health promotion issues.

Reducing the number of people with HIV and improving health outcomes

30. In terms of HIV Scotland's contribution to reducing the number of people in Scotland with HIV and improving health outcomes stakeholders stress the importance of a co-ordinated response to addressing HIV issues in Scotland and acknowledge the difficulties in quantifying the effectiveness of a single organisation such as HIV Scotland.

31. However stakeholders identify specific aspects of HIV Scotland's work, often in partnership with others, that they consider of value. This includes resources developed within the Healthy Gay Scotland work stream, the agency's engagement with targeted social marketing campaigns for gay and bisexual men, and work to connect and inform Africans living in Scotland with groups and relevant information.

32. HIV Scotland and stakeholders also identify a number of areas where the agency could do more; this is focused on improving partnerships and creating opportunities for dialogue between agencies, continuing a focus on prevention and supporting voluntary sector providers to evaluate practice, disseminate findings and promote learning.

Strengths and weaknesses

33. The agency has a number of strengths which have been identified in the course of the review.

34. HIV Scotland has strengths in relation to knowledge, awareness and understanding of HIV issues in Scotland spanning the areas of prevention, treatment and care. The agency is strong on accessing and utilising research and evidence from a range of sources.

35. The agency has also established a constant presence on the HIV scene in Scotland; particularly in relation to its work with communities most at risk and disproportionately affected by HIV and its interest and commitment to action on prevention. It is hoped that HIV Scotland, particularly in the context of the HIV Action Plan will be active nationally.

36. The agency is well positioned to influence the policy making process. Recent work on needs assessment for NHS Forth Valley models an approach to an area of work that will be beneficial to partner agencies.

37. The agency also needs to address a number of areas of weakness.

38. There are concerns about HIV Scotland's current level of activity and profile. It is accepted that part of the problem may be staff changes and vacancies but there are concerns that the agency has lost direction in terms of looking to its constituency and communicating effectively with it. In broad terms the agency needs to re-build the staff team and increase capacity to respond to the interests and demands of the HIV sector.

39. HIV Scotland needs to widen its policy reach or areas of interest. The agency should be proactive and seek to be the policy hub for HIV in Scotland. Whilst fulfilling such a role, and being funded by Government, the agency also needs to clarify and maintain its independence.

40. In terms of Healthy Gay Scotland projects HIV Scotland needs to address which initiatives have lost purpose or momentum and which are best done by other partner agencies more connected to service delivery. Whilst continuing to respond to the epidemiology of HIV the agency should re-focus some attention and resource beyond gay/bisexual men and African communities to other at-risk groups and communities.

41. Voluntary sector stakeholders identify a crucial role for a national representative HIV agency in monitoring and engaging with the delivery of the HIV Action Plan in Scotland; but worry that if HIV Scotland does not have vibrant and positive relationships with voluntary sector agencies it cannot fulfil such a role effectively.

42. The Review team proposed in the course of the Review that HIV Scotland consider appointing an interim Change Manager from within existing resources to begin to support Board and staff to address weaknesses and build on strengths identified in the course of the Review. HIV Scotland began this process toward the end of the Review.

Value for money

43. The Board and staff team have struggled in the past year to 18 months to deliver on aims and activities. Both Board and staff team have been coping with a number of vacancies, the agency has been less successful at delivering innovative work and relationships with some partners have deteriorated. One staff member identified early in the Review process that "This Review needs to help the organisation find its place of maximum value: we haven't got there yet".

44. A key strength of HIV Scotland is in its depth of knowledge and connection to the history of Scotland's policy and service response to HIV. The agency has shown its value and importance in the context of the development of the HIV Action Plan for Scotland.

45. The Review team concludes that it would be unfair and unhelpful to judge HIV Scotland's work based solely on the current difficulties it is experiencing, although they undoubtedly require to be addressed. HIV Scotland Board and staff are aware of the problems and understand that in order to reclaim and retain the confidence of partners and funders they must build on strengths and address the weaknesses identified here. In short, the agency must ensure that following acceptance of the recommendations of this Review, the quality of their relationships must improve, good governance must be assured and work programmes must clearly evidence a continued role and significance for the agency in informing, supporting and representing the HIV sector.

Recommendations on the future of HIV Scotland

46. In recent times the agency has struggled to maintain momentum and partnerships. In order to re-invigorate the agency's work there are a range of issues which must be addressed. Recommendations are made which aim to support the agency fulfil its aspiration to be the independent voice for HIV in Scotland; the main thrust of these recommendations is summarised below.

Recommendation 1: Maintain a focus on HIV

47. To ensure its relevance and clarity of purpose HIV Scotland must maintain its focus on HIV.

Recommendation 2: Ensure a national perspective

48. HIV is present across Scotland. In this context HIV Scotland must respond by ensuring it has, is seen to have, and maintains a national perspective.

Recommendation 3: Help create policy and services which reflect the human rights and promote the human dignity of people living with HIV

49. HIV Scotland's work should be based on an explicit commitment to the rights and entitlements of people living with HIV. Whilst this sits comfortably alongside common notions of social justice and fairness which underpin much Scottish Government policy and the ethos of the voluntary sector, it is nevertheless important to place values and principles at the heart of what the agency does, to articulate and express these clearly and often, and to use these as a basis for all activity.

Recommendation 4: Ensure effective governance

50. A priority for the agency is to address issues of governance. The Review recommends that changes are made to current arrangements to allow the Board to be more reflective of the HIV sector as well as increase its capacity to fulfil necessary functions. The Board needs to be made up of 14 people who bring knowledge, experience and a commitment to re-shape and genuinely steer the agency. A number of these Board members should come from partner agencies working in the HIV sector. In addition to the 14 member Board it is recommended that the position of Chair should be advertised as a 2 day per month, unpaid commitment, seeking an individual who brings expertise in organisational management.

Recommendation 5: Re-build the staff team

51. The skills, expertise and commitment of existing HIV Scotland staff must be considered alongside the needs of the agency as it seeks to reconnect with the HIV sector and make the most of the new context which the HIV Action Plan brings. There is a job to be done in bringing new staff members on board to increase capacity but also to re-build confidence in, and the confidence of, the current staff team. This will be supported by improving staff management systems.

Recommendation 6: Re-build HIV Scotland as a membership organisation

52. A new HIV Scotland Board should be clear that there is an urgent need to re- build a membership base. Once established the membership needs to be nurtured and managed. This will require staff time and commitment but also creative approaches to engagement whether they be face-to-face or virtual. Board and staff should take some time to explore how other networks and membership systems work and find best practice which can be adopted.

Recommendation 7: Communicate effectively with the membership

53. Having rebuilt a membership base and trust with its constituents HIV Scotland must communicate effectively with them. A key means will be via the HIV Scotland web site. HIV Scotland needs to look at what would be unique and relevant for it to engage in on-line. Other national bodies and initiatives have developed on-line networks which produce and disseminate regular e-updates with a mix of news, events and developments in the field. As HIV Scotland rebuilds its membership it needs to commit time and resource to this area of work.

Recommendation 8: Focus on policy, knowledge and advocacy/representation

54. Policy, knowledge and advocacy/representation should form the core of agency activity. The agency should not be involved in service delivery. One area of activity, the Condoms by Post scheme, needs to be looked at and decisions made by the new Board about whether its provision is a relevant, perhaps unique example of what HIV Scotland can do for a vulnerable or marginalised group, or whether it should be seen as service provision and managed elsewhere.

Recommendation 9: Support and help rebuild the HIV sector

55. While HIV Scotland cannot create new community provision it needs to commit some resource to fostering and supporting it where it exists. HIV Scotland should therefore consider its community development role and work with service delivery partners (both voluntary and statutory sector) to support them to respond to the needs which the agency identifies.

Recommendation 10: Support the HIV sector on-line

56. Several HIV Scotland supported projects have on-line elements which have been problematic. Improved IT competence within HIV Scotland has meant that these difficulties are being addressed. While it is expected HIV Scotland will draw back from day-to-day management of some of these projects it would be useful and relevant for the agency to consider how it might retain an IT capacity so that support can be given to partners/members to support their on-line work.

Recommendation 11: Maintain a focus on prevention

57. Whilst being interested in a more integrated and holistic policy and service response to HIV covering prevention, treatment and care, HIV Scotland should ensure a Scotland-wide focus on prevention.

Recommendation 12: Maintain an interest in the voluntary sector

58. The HIV sector is now a mix of both voluntary and statutory sector elements, often integrated through shared work and contractual arrangements. HIV Scotland should continue to work across the HIV sector in the best interests of people living with HIV, but retain a particular interest in the voluntary sector's response to the epidemic, ensuring that in its activities HIV Scotland supports the voluntary sector and builds capacity to respond effectively and creatively to HIV in Scotland.

Recommendation 13: Recognise those most at risk but avoid work in silos

59. Scotland's response to HIV must continue to follow the epidemiology and it is right for HIV Scotland to continue to put efforts into responding to the impact of HIV on gay/bisexual/ MSM and African communities. In its emerging work plan HIV Scotland should make explicit commitments to at-risk groups and communities but recognise that work will also be undertaken with others impacted upon by HIV. The Review recommends that the agency no longer structures its work with gay/bisexual/ MSM and African communities as the HGS and AMEHP projects, each with fixed budgets and staff but instead integrates work with, and for, these communities into a full HIV Scotland work plan.

Recommendation 14: Represent and advocate on behalf of the HIV sector

60. The Review recommends that HIV Scotland does not use the language of leadership (currently used in aim 1) but instead discusses with partners what they would expect from a broad-based national membership organisation in terms of representation and advocacy. HIV Scotland should also work with partner agencies to help them improve their efforts at user involvement, representation and advocacy. Representation and advocacy are built on trust. It is hoped that HIV Scotland and other agencies are willing to make a commitment to re-building relationships and collectively addressing these issues.

Recommendation 15: Support delivery of the HIV Action Plan

61. HIV Scotland is identified in the HIV Action Plan for Scotland as a key partner and specifically as a link to the voluntary sector and the contributions the sector makes. With a full complement of Board members and staff team in place HIV Scotland needs to work on the detail of its support for implementation and delivery of the Plan.

Recommendation 16: Write a business plan

62. HIV Scotland should produce a business plan which sets objectives for the agency (in detail for 2009/10 but also looking to 2010/11 and 2011/12) which should be specific, measurable, achievable, realistic and linked to a timeline/date for delivery. New funding arrangements with the Scottish Government and newly re-energised partnerships with the HIV sector require the clarity which a plan will bring. In turn, the Board and staff team of HIV Scotland will then have no doubts as to what is expected of them and what criteria will then be used to monitor and evaluate the effectiveness of the agency.