Elsevier

Social Science & Medicine

Volume 123, December 2014, Pages 202-209
Social Science & Medicine

The voluntary sector and health policy: The role of national level health consumer and patients' organisations in the UK

https://doi.org/10.1016/j.socscimed.2014.07.016Get rights and content

Highlights

  • Empirical evidence on the self-reported policy focus of health consumer and patients' organisations in the UK.

  • Empirical evidence on the changing nature of health consumer and patients' organisation activity in the UK.

  • Conceptual understanding of voluntary health sector in the UK.

  • Discussion of campaigning influence of health consumer and patients' organisations in the UK.

Abstract

This article explores the policy role of health consumer and patients' organisations (HCPOs), an important subset of the UK voluntary health sector. Based on research findings from two surveys, the article examines the activities, resources and contacts of HCPOs. It also assesses their impact on health policy and reform. There is some evidence that HCPOs can influence policy and reform. However, much depends on the alliances they build with other policy actors (including other HCPOs), their resources and leadership. HCPOs seem to have more impact on the detail of policy than on the direction of travel. In addition, there are potentially adverse consequences for HCPOs that do engage with the policy process, which may partly explain why some are wary of such involvement. For example, it is possible that HCPOs can be manipulated by government and other powerful policy actors such as health professionals and the drugs industry.

Section snippets

Methods

The 1999 survey used a postal questionnaire to map the characteristics and activities of HCPOs working in and across a number of condition areas. It sought information on their internal structures, aims, activities and the type and frequency of contact with policy makers and health policy stakeholders. It was sent in Autumn 1999 to 243 organisations, 57 of which were subsequently excluded as they did not meet the inclusion criteria (response rate 66%, n = 123). A fuller discussion of the

Conceptual and definitional issues

In its widest sense the voluntary health sector includes several types of organisation: Single issue campaign groups seeking to change policy and practice (on issues such as smoking, food policy, alcohol abuse, pollution); patients', carers' and service users' organisations; groups representing the wider public, or a section of the population, such as older people or ethnic groups; protest groups; voluntary service providers; umbrella groups and alliances; research charities; philanthropic

Creation, policy focus and resources

The very creation of HCPOs is a political phenomenon, signalling some previously unaddressed need or problem (putting aside for the moment the existence of ‘astroturf’ groups created or funded by other interests – see below). Although accurate figures are hard to come by, it appears that there has been a substantial growth in HCPOs in the last three decades, reflecting broader trends across the voluntary sector (Alcock, 2011). Our initial study in 1999 found that two-thirds of HCPOs had formed

Contact with policy actors

Given the government's broader involvement agenda, and their own policy interests, it appears that HCPOs have maintained significant levels of contact with key decision makers in recent years (Table 2). In 2010 a third (34%) reported ‘at least quarterly contact’ with Department of Health (DH) ministers, and two-fifths (39%) with DH civil servants. Half (49%) had ‘at least quarterly contact’ with MPs, while 32% reported this frequency of contact with members of the House of Lords. HCPOs are

Professionals and other health interests

Professionals are often instrumental in establishing HCPOs and are active within them (Baggott et al., 2005; Huyard, 2009). Professionals offer medical expertise, provide advice on the latest interventions, help commission and carry out research, and are often involved in HCPOs' internal governance. In the 1999 survey, over two thirds of HCPOs stated that healthcare professionals were members of their organisation. In most cases, it appears that HCPOs and health professionals develop mutually

Influence over policy

Although HCPOs have pursued and responded to agendas relating to health policy and reform, we know little about their actual influence. Larger organisations, major national charities such as Mind, Age UK, Carers UK, British Heart Foundation, National Childbirth Trust, Macmillan Cancer Support, and Arthritis Care, appear to be among the most influential by repute (Baggott et al., 2005). However, UK studies suggest that most HCPOs have meagre financial resources and little political leverage, and

Conclusion

Certainly, as far as national organisations are concerned, there is much continuity in the importance attached to particular functions, notably providing advice, support and information and raising awareness. HCPOs have also maintained their interest in building relationships with other stakeholders and in seeking to influence policy-making. However, changes in the health policy context and in governance structures appear to have prompted adjustments in the focus of their activities. In

Acknowledgements

Professor Martyn Denscombe, De Montfort University Faculty of Business and Law for assistance with 2010 Online Survey; ESRC Grant Number R000237888 for the funding of the 1999 survey.

References (69)

  • R. Baggott et al.

    Health consumer and patients' organisations in Europe: towards a comparative analysis

    Health Expect.

    (2008)
  • R. Baggott et al.

    The Big Society in an age of austerity: threats and opportunities for health consumer and patients' organisations in England

    Health Expect

    (2014)
  • N. Bhati et al.

    Counting the Cuts: the Impact of Spending Cuts on the UK Voluntary and Community Sector 2013 Update

    (2013)
  • T. Borkman et al.

    Self help groups challenge healthcare systems in the US and UK

    Adv. Med. Sociol.

    (2008)
  • S. Boseley

    Drug Firms and Patient Groups Join in Fight to Overturn Advertising Ban

    (2007)
  • P. Brown et al.

    Social movements in health: an introduction

    Sociol. Health Illn.

    (2004)
  • Cabinet Office

    Building the Big Society

    (2010)
  • B. Chamak

    Autism and social movements: French Parents' Associations and International Autistic Individuals Associations

    Sociol. Health Illn.

    (2008)
  • J. Church et al.

    Health consumers in Canada: swimming against a neo-liberal tide

  • J. Clarke et al.

    Creating Citizen-consumers: Changing Publics and Changing Public Services

    (2007)
  • Cm 6374

    Choosing Health: Making Healthier Choices Easier

    (2004)
  • Cm 6737

    Our Health, Our Care, Our Say: a New Direction for Community Services

    (2006)
  • Cm 7432

    High Quality Healthcare for All

    (2008)
  • Cm 8134

    Healthy Lives: Healthy People

    (2010)
  • N. Curry et al.

    The Voluntary and Community Sector in Health: Implications of the Proposed NHS Reforms

    (2011)
  • DH

    Making Partnership Work for Patients, Carers and Service Users: Strategic Agreement between the Department of Health, the NHS and the Voluntary and Community Sector

    (2004)
  • DTI

    Social Enterprise: a Strategy for Success

    (2002)
  • A. Durstine

    Building a Latin American Cancer patient movement: Latin American cancer NGO overview

    Salud Publica Mex.

    (2009)
  • R. Forster et al.

    Austrian health consumer groups

  • M. Fox et al.

    Empowering health care consumers in the United States

  • J. Geissler

    Health policy in Germany: consumer groups in a corporatist polity?

  • B. Goldacre

    Bad Pharma

    (2012)
  • S. Greer

    Territorial Politics and Health Policy

    (2009)
  • C. Hogg

    Patients, Power and Politics

    (1999)
  • Cited by (0)

    View full text