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The role and future of the voluntary sector.

This paper focuses on the HIV voluntary sector so far, its role in community care and support, and what its future may be in light of current financial cutbacks.

What is the voluntary sector and what has it contributed so far?

Volunteering predates the state, has its own diverse characteristics and is distinct from other market providers. Independent voluntary organisations come in different formats: charities, not-for-profit, cooperatives; all with a range of legal configurations. To discuss the role of the HIV voluntary sector, it is first important to widen thinking to the whole of the independent voluntary sector's work. It is predominantly contributed by civil society for mutual benefit, and the last 2 years have seen this emerging as the 'Big Society' politic.

In 2009, the Independent Commission on the Future of the Voluntary Sector in England [1] stated that there were about 200,000-240,000 voluntary bodies, with social care representing 37% of their total activities, and a total operating expenditure estimated at [pound sterling]13.5 billion in 1995. Of these monies, sales and earned income account for 40%, grants and donations for 43%, and investments 17%. The monies are attributed as coming from: individuals (41%); government (24%); and other charities, businesses and investments (35%). The Charity Commission figures suggest that there may be as many as 620,000 paid workers in this sector alone. Local government is the main source of statutory funding for many voluntary and community organisations, historically through grants, although increasingly resources are distributed through contracts.

What does the voluntary sector do that is different from the market?

The voluntary sector is traditionally closer to the community of interest and operates with a strong degree of autonomy and control; however, it still has a wide range of governance, quality and legal regulations. Although the voluntary sector may be supported financially by the state, it is not just another means of delivering public services. Voluntary action is a means of providing support to users, and is often user-led, centering on the most marginalised individuals and communities.

Why do people volunteer?

The National Council for Voluntary Organisations (NCVO) reported on why people formally volunteer today [2].

* People get involved because they want to make a difference.

* People feel strongly towards the cause they choose to support.

Additionally, a need within the community was part of one of the top six reasons [3].

Today, however, there is an emerging language describing a plethora of voluntary sector organisations that now sit under the broad umbrella of the 'third sector'. The 'Big Society' is part of that new language. The Big Society formed a key element of the Conservatives' 2010 election campaign and was the subject of the first major policy announcement of the new coalition government in May 2010 [4].

The main Big Society themes are:

* Supporting the voluntary and community sector.

* Devolving power to communities and local government.

* A greater role in public services for voluntary and community organisations (VCOs) and civil society organisations.

The evolution and complex environment of the voluntary sector

The voluntary sector has contributed significantly to today's models of HIV service delivery and evolved as a result of competitive market demands. It lives symbiotically alongside other agencies, statutory and private, and is a major stage in the 'patient journey'. The same pressures that are exerted on other providers challenge and influence the voluntary sector. The HIV voluntary sector emerged out of a complex past, as strong individuals from marginalised communities began working together for a single goal.

In the 1980s, the HIV voluntary sector in the UK developed to meet an overwhelming demand. Three decades ago, there was very little, or no, community care, therapeutic or peer support for people diagnosed with HIV. The sector emerged out of a need for it, and community-based work such as 'buddying' programmes and palliative care support started to develop. Initially gaps were filled though 'peer-' or 'user-led-' support. LGBT-led community activism was critical to the development of the sector, and served to strengthen and enhance user voices. This model then became an exemplar, and was used in wider areas by clinicians and within emerging social care provision [5]. It is encapsulated in the ethos of the disability movement maxim: 'Nothing about us without us' [6].

In the last three decades, the partnership between someone living with HIV and clinical and social care, research, activism, and voluntary and community engagement, has not only driven HIV services, but also pioneered new models of delivering for other health conditions. The social model of disability has gained ground and established a strong foundation. When clinicians had no immediate medical answers, the user-led movement blossomed to meet its own needs. The national HIV voluntary sector grew out of peer-led charities such as the Body Positives.

Patient advocates

Action and reflection were vital tools in helping to expand understanding, particularly for those silenced voices that needed to be heard. Within the social-science context, HIV has always demanded insider participatory and human inquiry, as HIV is a lived and complex experience. Ledwith [7] suggests there are no absolutes or truths; only the authority of knowing that is located in the reality of people's lives. The voluntary sector supported the emerging role of the HIV patient advocate, a role that is still common within clinical treatment centres. The Treatment Action Groups were the forerunners of patient and public involvement forums. For the last two-and-a-half decades most HIV clinics have had a patient advocate working alongside the research and medical teams.

New models of working and management

To manage a growing epidemic, people, from activists to clinicians, began reflecting on internal and external environments, both as individuals and in collectives globally, to find solutions and to make sense of the epidemic's complexity. Existing hierarchical management models diversified to accommodate the new partnerships. In the 1990s, a number of NHS public-health practitioners seeking evidence-based practice [8] adopted action-learning sets in order to disseminate and strengthen public-health learning across communities. The voluntary sector had, however, already introduced reflective action learning models [9] as a tool earlier in the previous decade as a natural model of governance. It has also been used widely in HIV resource-poor areas, such as parts of Africa, to gain consensus and consolidate actions. BPNW still uses reflective practice as an established part of its management, influencing the development of the operational team's activities and BPNW's strategic business plans. The voluntary sector was instrumental in shifting patient and clinician power balances and supporting new models of engagement.

Peer-led self management

Stanford University developed the specialist Positive Self-Management Program [10]. This programme has since been brought to the UK and the Expert Patient CIC now supports large numbers of volunteers to cascade the peer-learning. The HIV-specific programme is also embedded in the HIV voluntary sector.

Influences on the voluntary sector and the changing position of the welfare state

The last three decades have seen modern welfare states face significant challenges, such as ageing populations and greater competition for smaller monetary pots. This is against a background of growing distrust in public office and everdecreasing democratic engagement.

It has long been apparent that rates of health spending have not been economically viable. Increasing longevity and improvements in pharmaceuticals and clinical medicine have been outstripping the ability of health services to meet demands. Gone are the days of the kindly consultant sitting at a patient's bedside in the cottage hospital making the 'rationing' decisions. These decisions are now made through management models, commissioning frameworks and NICE guidelines. Additionally, government legislation has increasingly controlled local NHS and local authority decision-making.

The current deficit crisis has clearly been 'the writing on the wall'. For the last 30 years, successive governments have struggled to introduce a pluralistic approach to strengthen the health economy and facilitate a new model fit for 21st-century delivery. However, the introduction of wider private medical services and the development of public private partnerships, have in many cases, increased fiscal pressures, with long mortgages for decades of repayments to public private finance initiatives (PPFI).

What do we mean now by the voluntary sector?

The voluntary sector has evolved from groups of unqualified community helpers to sophisticated providers. As voluntary groups grew, they commanded a share in the delivery of care and, in particular, an equal share in the HIV commissioning budgets. Today, only some of the voluntary sector groups continue to be identified as

'user-driven'. There have been financial shifts from commissioners to individual community care budgeting and, although the AIDS Support Grant continues from central government for now, the ring-fencing has been removed. The personalisation agenda in HIV is anticipated to gain further ground between 2011 and 2013 as the welfare benefits and employment changes gather momentum.

The last decade has seen a dominant market culture developing within the voluntary sector. There has been more legislation to regulate and order individuals and communities, and even more complex contractual arrangements have been created. In order to meet these contractual demands, voluntary-sector providers have had to shift the focus of their work from communities to paperwork. They have had to provide outcome data, IT intelligence, objectives, mission statements and slick logos to compete in the market. The simple approach of meeting the needs of a particular community has instead become dominated by a business culture. In the last 10 years, a large proportion of the Body Positive charities across the country have closed. These smaller, local-community organisations were unable to meet the market demands and larger HIV charities now predominate over wider geographical footprints.

Third Way policies and the economic crash of 2008-2009 exposed the UK's mountains of public debt [11]. Legislative control has reduced community and neighbourhood participation at a local level. Central government seemed to seek to control and manage basic moral and ethical decisions. The new Big Society ideology is seen by some as a cynical attempt to harness the community and voluntary sector for free. However, while it has been poorly articulated, it could also be a reaction to being over-audited and may be a way of returning decision-making to communities.

What voluntary organisations may look like after the impact of the financial cuts

HIV has perhaps seen as many new models of voluntary-sector organisations as there have been different antiretroviral drug regimens. So what is the voluntary sector experiencing? My belief is that the voluntary sector recognises that this is a complex and challenging situation for both those who set budgets and also managers who have to reduce costs. Globalisation has brought greater awareness of world markets and competition. However, the local conversations that we have had are about the critical impact on health outcomes and the wellbeing of local people, and how to minimise the devastating effect that this will have on the most vulnerable over the next few years.

Over the last months, behind the scenes, the increased emphasis on neighbourhood delivery and the localism agenda has impacted on the work focus of the specialist HIV voluntary sector. If conversations are had early enough, then the HIV specialist services could develop strategies, for example, adopting a consortium approach, possibly with a hub-and-spoke model of delivery. This would ensure local delivery without a loss of expertise and economies of scale. However, providers have to agree on the needs that are being addressed [12] and a culture of trust must also exist. However, as we have just lived through a period of a competitive market culture, can agreement and trust realistically emerge when set against the backdrop of the current reductions in local authority budgets and services, and an increasingly unstable market?

Manchester City Council has proposed 22% cuts to the voluntary sector. The NHS faces less immediate pressures, but its need to reduce expenditure will impact in 2011-2012. Already national HIV voluntary sector agencies have made approximately 25% cuts in staff and delivery. In theory, the national Transitional Fund and Big Society bank loans could be available to cover short-term gaps while organisations develop funding streams. However, it is quite unclear what the future opportunities for funding are, and the voluntary sector is understandably reluctant to risk undertaking loans.

The current government's Health Secretary, Andrew Lansley, has embarked on a policy of NHS reform [13] that involves the abolition of primary care trusts and a transfer of commissioning power to GPs, and has the ambition to vastly increase participation of the private and the voluntary sector. As with other sectors, such as education, this indicates that the NHS will still be funded from taxation but that the goverment will take a step back from running the service.

The possible future role of the voluntary sector

All sectors, including the HIV voluntary sector, are in a state of flux. What are the opportunities and possible directions of the HIV voluntary sector? Maximising limited resources to address needs effectively has never been more crucial. With the central localism agenda and local authority concentrating on activity at neighbourhood level, the role of users is even more crucial. The WHO defined three stages to the HIV epidemic [14], the third stage being that addressing HIV stigma is critical to people's health and wellbeing. Working across a socially inclusive integrated neighbourhood, with HIV found within the disability agenda, is a strategy for addressing that stigma.

The emerging Big Society could be an opportunity for the recognition and engagement of civil society, with greater emphasis on 'expert patient' models being explored. Nurses working outside the NHS, or models of delivery involving volunteers, strengthen this agenda. Specialist HIV voluntary consortiums using a hub-and-spoke model could deliver a more cost-effective service. However, we must first overcome the barriers and mistrust resulting from competition for limited resources that providers are facing. South London HIV Partnership has piloted a working model with a single point of entry that has developed effective partnerships and improved outcomes for HIV clients [15].

Voluntary action is a major force in its own right, and voluntary bodies must always be free to act as advocates. It is not just an adjunct to the statutory sector, but rather it is a reflection of what emerges from communities. If the voluntary sector is to maintain its impact, diversity of funding sources is one of the best guarantees of independence. Some statutory and voluntary organisations have experienced significant loss of the resources that they have relied on.

A primary question for organisations to ask is: 'Have we got a passion to continue and a clear direction?' This is not a case of people simply securing jobs in the HIV voluntary sector. It is because the voluntary sector is user-led, understands needs and can respond rapidly and effectively. To survive, a strong strategic direction and business case is vital. For the next couple of years, trading commercially within the current climate will depend on a variety of sources including income from gifts, donations, grants, contracts, sales or trading. There will also be a substantial contribution, not to be underestimated, from volunteers, people learning a new skill, student placements or people living with HIV directing the work of the sector. A wider role for the voluntary sector in HIV prevention, sexual health and the whole blood-borne virus agenda also makes economic sense.

A healthy independent voluntary sector is the backbone of civil society and a vital indicator of democratic health. We can measure that democratic engagement against how much userled HIV voluntary networks feature in the next decade.


[1.] Robb C (ed.) Meeting the Challenge of Change: Voluntary Action into the 21st Century. National Council for Voluntary Organisations, London, 1996. Available at: .pdf (last accessed May 2011).

[2.] National Council for Voluntary Organisations. Participation: Trends Facts and Figures. National Council for Voluntary Organisations, London, 2011. Available at: nds_facts_figures.pdf (last accessed May 2011).

[3.] Department for Communities and Local Government. 2008-09 Citizenship Survey: Volunteering and Charitable Giving Topic Report. Available at: statistics/pdf/1547056.pdf (last accessed May 2011).

[4.] BBC News. Cameron and Clegg set out 'big society' policy ideas. Tuesday, 18 May 2010. Available at: (last accessed May 2011).

[5.] Sang B, Selbie D. Integrating health and social care for mental health: frameworks for action and learning. Managing Care, 1998, June.

[6.] Charlton JI. Nothing About Us Without Us. Disability Oppression and Empowerment. University of California Press, Berkeley, CA, 1998.

[7.] Ledwith M. Participating in Transformation: Towards a Working Model of Community Empowerment. Venture Press, Birmingham, 1997.

[8.] Learmonth A. Action learning as a tool for developing networks and building evidence-based practice in public health. Action Learning: Research and Practice, 2005, 2(1), 97-104.

[9.] Revans R. The Origins and Growth of Action Learning. Chartwell-Bratt, Bromley, 1966.

[10.] Stanford Patient Education Research Center. Positive Self-Management Program for HIV (PSMP). Available at: (last accessed May 2011).

[11.] Jordan B. Why the Third Way Failed. The Policy Press, Unlversity of Bristol, 2010.

[12.] Carr B. Total Place Pilot Project in Birmingham. NCVO Needs Conference 2010. Available at: watch?v=QZlpUdXi1ew (last accessed May 2011).

[13.] McCabe C, Kirkpartrick I. The NHS braces itself for privatisation. The Guardian, 12 April 2011.

[14.] Mann JM, Gruskin S, Grodin MA, Annas GJ (eds). Health and Human Rights: A Reader. Routledge, New York, 1999; p.7.

[15.] Markham C (ed.) The Bigger Picture: The first Report of the South London Partnership. 2011. Available at: (last accessed May 2011).

Correspondence to: Phil Greenham, CEO, Body Positive North West, 39 Russell Road, Whalley Range, Manchester M16 8DH, UK (email:

Phil Greenham

CEO, Body Positive North West (BPNW), Manchester
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Author:Greenham, Phil
Publication:HIV Nursing
Article Type:Report
Geographic Code:4EUUE
Date:Jun 22, 2011
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