Scottish Government

8. RECOMMENDATIONS ON THE FUTURE OF HIV SCOTLAND

Introduction

8.1 In this final chapter of the Review report we make recommendations on the future direction of HIV Scotland. These recommendations should be seen in the context of the material presented in earlier chapters.

8.2 A key strength of HIV Scotland has been its presence on the scene across a period when HIV continues to impact on the lives of many people. The agency's work to help focus attention and effective responses, particularly in terms of communities most at risk has been invaluable. Its involvement in development of the HIV Action Plan in Scotland has been detailed and informative. 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 follow which aim to support the agency fulfil its claim to be the independent voice for HIV in Scotland.

Recommendation 1: Maintain a focus on HIV

8.3 The increase in transmission of HIV in Scotland, a growing population of people living with HIV and improved recognition of the challenges faced by them confirms the need for a national HIV membership based agency which supports and resources the HIV sector. The implementation of the HIV Action Plan in Scotland underscores the need for such an agency. To ensure its relevance and clarity of purpose HIV Scotland must maintain its focus on HIV.

Recommendation 2: Ensure a national perspective

8.4 HIV is present across Scotland. In some urban/central belt areas policy and service responses have been developed as a reaction to a visible HIV positive population. However there are individuals and communities across Scotland who need to see improvements in prevention, treatment and care. It can also be claimed that major service providers operating in areas with relatively small numbers of people living with HIV have not adequately considered the needs of local people living with HIV. In this context HIV Scotland must respond by ensuring it has, and is seen to have, 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

8.5 Individual contributors to this Review who have personal experiences of services have highlighted many professional practices which are exemplary but others which are disrespectful or indicative of ignorance. HIV Scotland's work should continue to 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

8.6 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.

8.7 The Board should therefore have a member who comes from each of the following agencies who have a key role in the HIV sector. They might be a senior staff member or a Board member but should come from:

• National AIDS Trust
• Gay Men's Health
• Waverley Care
• Terrence Higgins Trust
• HIV/ AIDS Carers and Family Service Providers
• LGBT Youth Scotland

8.8 Representing the statutory sector there should be:

• 3 members from NHS Boards (at least 2 of which should be territorial Health Boards)

8.9 It is important to recognise that while Board members will be sourced from particular agencies, and they should be people who know the HIV sector well and can bring an in-depth knowledge of their own agency, once they are members of the HIV Scotland Board their responsibilities lie in the area of steering this organisation and having the future of HIV Scotland as their core and shared task.

8.10 To move on to other members: meeting needs in terms of a skills base there should be at least one further Board member with skills/knowledge in each of the areas of:

• Human Resources/Personnel management
• Communications
• Finance
• Research
• HIV as a global/international issue

8.11 Finally, 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. While it would be advantageous if this person had a good knowledge of the voluntary sector and HIV issues, this should not be essential.

8.12 The current Board and senior management must work with the short-term Change Manager and advisors to the Board (providing legal and financial guidance) to make these changes happen. Significant effort will be required to ensure the voluntary sector agencies named see the purpose of their membership and have confidence that engagement at this level will see results which respond to the criticisms they have made in the course of this Review and then, in time, benefit the HIV sector.

8.13 It is likely that a new Board for HIV Scotland will need to meet monthly in the first year. Board members should be clear that in their first 12 months in post a commitment of a minimum of a half day per month may be required.

8.14 The purpose of seeking to appoint a Chairperson who brings organisational management skills, and who can provide a significant amount of time, is in recognition of the amount of work and change to practices which are required by the agency. Recruitment of this person should be managed by an external HR company and selected by a small independent group of people who understand HIV Scotland's needs.

8.15 On appointment, Board members themselves will be supported by the Chair. The Chair should also have direct and regular contact with senior staff to ensure that they are clear about the intent and expectations of the Board.

Recommendation 5: Re-build the staff team

8.16 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.

8.17 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.

8.18 The fixed-term Change Manager should work with existing staff to ascertain where they see their strengths and interests and how they would like to see their role in a new phase of work for HIV Scotland.

8.19 The agency must establish staff support and supervision and annual appraisal and ensure that other systems such as diaries, timekeeping, record of sickness and leave etc work well.

8.20 The Change Manager should be in a position during their tenure to make proposals to a new HIV Scotland Board on a future staffing structure for HIV Scotland. Once agreed any new posts should be advertised. A key task is to match the staffing resource of the agency with an emerging work plan; ensuring that all posts reflect what the agency wants to do rather than what has been done in the past.

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

8.21 The relevance and legitimacy of HIV Scotland lies not just in its expert knowledge of HIV issues but in its live and vibrant connection to agencies and individuals with an interest in HIV issues. A new HIV Scotland Board should be clear that there is an urgency required in terms of building a membership base that inform HIV Scotland's activities but are also informed by them.

8.22 Current arrangements allow for 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). The new Board should consider whether this remains a relevant and useful distinction in terms of a wider understanding of what the HIV sector is (in particular the need to consider statutory sector colleagues and agencies) and whether it engages adequately with individual HIV positive people.

8.23 Once established the membership needs 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

8.24 Having rebuilt a membership base and trust with its constituents HIV Scotland must communicate effectively with them. The HIV Scotland website will be a tool for this work. A website cannot be all things to all people but the agency faces a challenge in that its constituency will be professionals (who themselves will have a range of confidence, understanding and roles) as well as positive people and their partners and families.

8.25 HIV Scotland needs to recognise what other service delivery agencies do well and signpost to them where appropriate, but it also needs to look at what would be unique and relevant for it to engage in on-line. It is reasonable to assume that when an individual or agency in Scotland has a question, worry or interest in HIV in Scotland that this agency's website is the first they find. But then what? Resources from the Monument Trust have allowed the agency to look at current difficulties with its on-line work but much of this has been about technical problems and addressing difficulties inherited from poor consideration of how several projects have utilised the web. The agency still needs to address the question of how to have a minimal, relevant, engaging and constantly updated web presence.

8.26 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. These need to be regular, informative, relevant and journalistic in style. 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

8.27 Across contributions to the Review there has been recognition of HIV Scotland's strengths in relation to policy and knowledge of HIV issues. Advocacy/representation is seen as essential but more problematic for HIV Scotland to date. (This is considered further below). These 3 areas should form the core of agency activity. The agency should not be involved in service delivery.

8.28 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 from the bottom up

8.29 Some stakeholders express concerns that HIV Scotland is overly focused on national policy and strategy whilst there is a diminishing voluntary or community-based sector which lacks real support. While HIV Scotland cannot create new community provision it needs to commit some resource to fostering and supporting it where it exists. On occasion choices will need to be made; for example questioning the resource required to attend international conferences or to support international work when Scottish community based agencies or isolated individuals would benefit from support. 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

8.30 As highlighted elsewhere 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

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

8.32 HIV Scotland has a long-term interest in HIV prevention, an interest shared in particular by voluntary sector agencies. There are concerns amongst some stakeholders who have contributed to this Review that HIV prevention lacks profile and support in the context of an emerging HIV Action Plan. In response to this concern HIV Scotland should continue a keen interest in HIV prevention.

Recommendation 12: Maintain an interest in the voluntary sector

8.33 The nature of the HIV sector has already been discussed in the report; with recognition that the sector is now a mix of both voluntary and statutory sector elements, often integrated through shared work and contractual arrangements. The Review recommends that HIV Scotland continues to work across the HIV sector in the best interests of people living with HIV, but that the agency retains a particular interest in the voluntary sectors response to the epidemic, ensuring that in its activities HIV Scotland supports the 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

8.34 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/men who have sex with men and African communities. However the perception amongst some stakeholders is that this has sometimes meant that work with other groups and communities has been neglected.

8.35 In its emerging work plan HIV Scotland should make explicit commitments to
at-risk groups and communities but also recognise that work will also be undertaken with others also impacted upon by HIV.

8.36 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. To be clear, a great deal of the focus of HIV Scotland may well remain with these identifiable communities, but an agency-wide view of needs and actions will enable the Board and staff to make more of a commitment to shared issues and potential projects; for example exploring and addressing stigma, benefits, ageing etc.

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

8.37 In the best interests of individuals, groups and communities affected by HIV it is important that agencies in the field work together to establish mechanisms for representation and advocacy.

8.38 HIV Scotland has struggled with notions of leadership, representation and advocacy. When relationships with others, particularly in the voluntary sector, are poor claims to lead, represent or advocate on behalf of others can be questioned or resisted.

8.39 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; taking on board the many voices and perspectives that make up the HIV sector including people living with HIV.

8.40 In many circumstances agencies within the HIV sector can represent their own views; and on occasion they will draw on the views of their volunteers or people in receipt of support and services. HIV Scotland should work with partner agencies to help them improve their efforts at user involvement, representation and advocacy. HIV Scotland's role in advocacy on behalf of people living with HIV must be respectful of this agency-based representation and seek to be additional. There will be times when service providers do not reach individuals or groups who should have their say and HIV Scotland can fill a gap. There will be times when a national perspective is required and HIV Scotland can work with service providers to draw upon their user/membership base as well as reach those harder to engage.

8.41 It is hoped that in the context of new relationships, and a Board and membership which are themselves representative of the HIV sector that there will be a growing confidence that when HIV Scotland is at the table, particularly in national strategic forums, it can be trusted to represent the views of its membership.

8.42 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

8.43 HIV Scotland is identified in the HIV Action Plan in Scotland as a key partner and specifically as a link to the voluntary sector and the contributions it 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.

8.44 The agency has already contributed significantly to informing the Plan and can bring knowledge and expertise to the subsequent work which will be done in terms of regional structures which will be established to deliver the Plan, deliver improved needs assessment, improve engagement with service users, and enhance planning, commissioning and evaluation.

8.45 The agency has also done some development work on a training programme which has potential to meet continuing professional development ( CPD) needs in the HIV sector and beyond. This should be developed further.

8.46 Supporting delivery of the HIV Action Plan is a significant area of work and managing HIV Scotland's role, maintaining a balance between this work and other aspects of the agency's operations, will need close management by the Board working with the staff team.

Recommendation 16: Write a business plan

8.47 The agency has already done some work to clarify what it does, why and how although that paper (referred to in chapter 5 and entitled 'About HIV Scotland' latest draft dated 08.04.09) has not been adopted or developed by the Board. With the support of the staff team and short-term Change Manager the new Board should revisit this work to support the production of 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.

8.48 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 effectiveness of the agency.