The government announced that it would accept the recommendations of an official taskforce on improving user participation in social care regulation. It said that national minimum standards in care homes would be applied in a more flexible way.
Source: Press release 1 December 2004, Department of Health (020 7210 4850)
Links: DH press release | DH response (pdf) | BRT press release | Taskforce report (pdf) | Community Care report
Date: 2004-Dec
A series of articles examined service-user involvement in mental health.
Source: Journal of Mental Health, Volume 13 Number 6
Links: Abstract
Date: 2004-Dec
A paper said that 'co-creation' should be the foundation for public services, such as healthcare - in which users were participants in the design, creation and delivery of services. By investing time and effort in the process, those in receipt of services would share with professionals some of the risks of, and responsibilities for, outcomes.
Source: Hilary Cottam and Charles Leadbeater, RED Paper 01 Health - Co-creating Services, Design Council (020 7420 5200)
Links: Summary | Guardian report
Date: 2004-Nov
A discussion paper explored ways of increasing user participation in public services, and how to make it effective by applying a more systematic and strategic approach.
Source: Johnston Birchall and Richard Simmons, User Power: The participation of users in public services, National Consumer Council (020 7730 3469)
Links: Report (pdf)
Date: 2004-Oct
A report provided examples of how the outputs from patient and public involvement activity had influenced service planning and development in the National Health Service, and delivered improvements for patients.
Source: Meredith Vivian, 'Getting over the Wall': How the NHS is improving the patient s experience, Department of Health (08701 555455)
Links: Report (pdf)
Date: 2004-Oct
The healthcare regulator said that many National Health Service patients were not involved enough in decisions about their care, and so could not give meaningful consent to treatment. Over 300,000 patients were asked about their experiences in 568 English NHS trusts. Individual surveys covered the ambulance service, young hospital patients (under 18 years), the mental health service, adult inpatients, and patients in primary care trusts. Campaigners said that a high proportion of people with mental health problems faced 'unsafe, un-therapeutic' conditions in hospital, and were often treated with little respect or dignity by health professionals.
Source: Patient Survey Report 2004: Overview, Healthcare Commission (020 7448 9200) | Press release 4 August 2004, Mind (020 8519 2122)
Links: Overview report (pdf) | Pdf links to individual survey results | King's Fund press release | Mind press release | Guardian report | Community Care report
Date: 2004-Aug
Research found that pupil consultation could improve teaching and learning, especially for those previously disengaged from the educational process. Teachers found the process improved their relationship with pupils, but could sometimes raise expectations that they could not fulfil.
Source: Jean Ruddock, Consulting Students about Teaching and Learning: Process, impacts and outcomes, Economic and Social Research Council (01793 413000)
Links: Report (pdf) | Summary (pdf)
Date: 2004-Jul
The government announced details of proposed changes in arm's-length bodies in the National Health Service, including the abolition and merger of a number of bodies. The Commission for Patient and Public Involvement in Health would be abolished, and 'stronger, more efficient arrangements' would be put in place to provide administrative support and advice to patients' forums. But the Commission Chair expressed fears that the proposals threatened the future of patient and public involvement. A health service think-tank warned that attempts to involve patients and the general public in the NHS were in 'disarray'.
Source: Reconfiguring the Department of Health's Arm's Length Bodies, Department of Health (08701 555455) | House of Commons Hansard, Written Ministerial Statement 22 July 2004, columns 73-77WS, TSO (0870 600 5522) | Press releases 22 July 2004, Commission for Patient and Public Involvement in Health (0845 120 7111) | Press releases 22 July 2004, King s Fund (020 7307 2400)
Links: Report (pdf) | Hansard | DH press release | CPPIH press release (1) | CPPIH press release (2) | King's Fund press release | Guardian report
Date: 2004-Jul
Three organisations (National Consumer Council, Confederation of British Industry, and the National Council for Voluntary Organisations) formed a joint campaign 'Future Services' aimed at promoting greater public participation and engagement in the reform of public services.
Source: Press release 23 July 2004, National Consumer Council (020 7730 3469)
Links: NCC press release
Date: 2004-Jul
A collection of essays discussed the possible future impact of greater patient choice within the National Health Service.
Source: Margaret Mythen and Tom Coffey (eds.), Patient Power: The impact of patient choice on the future NHS, New Health Network (020 7407 1618)
Links: Summary
Date: 2004-Jun
An article considered the degree to which government policies since 1997 heralded a marked evolution in the principles and practice of participatory democracy in the planning and governance of healthcare.
Source: Timothy Milewa, 'Local participatory democracy in Britain's health service: innovation or fragmentation of a universal citizenship?', Social Policy and Administration, Volume 38 Issue 3
Links: Abstract
Date: 2004-Jun
A report provided a synthesis of the findings from 12 research projects in the Department of Health's 'Health in Partnership' research programme, aimed at improving the involvement of patients, carers and the public in health decision-making.
Source: Christine Farrell, Patient and Public Involvement in Health: The Evidence for Policy Implementation - A summary of the results of the Health in Partnership research programme, Department of Health (08701 555455)
Links: Report (pdf)
Date: 2004-May
An article explored the processes of participation within deliberative forums - such as user panels, youth forums, area-based committees - developed as a means of encouraging a more active, participating mode of citizenship and of improving welfare services by making them more responsive to users.
Source: Janet Newman, Marian Barnes, Helen Sullivan and Andrew Knops, 'Public participation and collaborative governance', Journal of Social Policy, Volume 33 Issue 2
Links: Abstract
Date: 2004-Apr
Only 20,000 people voted in elections for control of the first 10 foundation hospital trusts, created on 1 April 2004. (The trusts serve more than 2 million National Health Service patients.)
Source: The Guardian, 7 April 2004
Links: Guardian report (1) | Guardian report (2)
Date: 2004-Apr
A report provided a synthesis of six literature reviews on the impact of user participation on change and improvement in social care services.
Source: Sarah Carr, Has Service User Participation Made a Difference to Social Care Services?, Social Care Institute for Excellence (020 7089 6840)
Links: Report (pdf) | Summary (pdf)
Date: 2004-Apr
A report summarised a survey of public, patients and health professionals, as part of the development by the Department of Health of a patient experience statement encapsulating how patients would like to experience the National Health Service. The most commonly identified negative feelings were confusion, disappointment, annoyance and frustration - underlying causes were poor communication, long waiting times, condescending staff attitudes, and feeling lost in the system. Many participants also identified positive feelings: feeling cared for, listened to and reassured - there was a greater incidence of this among participants from the rural, more affluent areas and those in receipt of maternity care.
Source: Opinion Leader Research, Results from a Programme of Consultation to Develop a Patient Experience Statement: Final report, Department of Health (08701 555455)
Links: Report (pdf)
Date: 2004-Mar
A think-tank report said health policies failed to grasp the potential for increasing the involvement of patients and frontline staff. It also accused the government of ignoring the vital importance of supportive neighbourhoods to healthcare and health promotion.
Source: David Boyle, Molly Conisbee and Sarah Burns, Towards an Asset Based NHS, New Economics Foundation, available from Central Books (020 8986 5488)
Links: Report (pdf) | NEF press release | Guardian report
Date: 2004-Mar
The independent watchdog for the National Health Service said that, although many organisations had developed impressive strategies for involving patients, carers, service users and the public, these were often not rooted in reality or linked to operational priorities.
Source: Sharing the Learning on Patient and Public Involvement from CHI s Work, Commission for Health Improvement (020 7448 9200)
Links: Report (pdf) | Summary (pdf) | CHI press release | CPPIH press release
Date: 2004-Feb
A report examined the evidence regarding organisational participation infrastructure for young people in the statutory and voluntary sectors in England, and made recommendations for improvements.
Source: David Cutler and Alice Taylor, Expanding and Sustaining Involvement: Snapshot of participation infrastructure for young people living in England, Department for Education and Skills (0845 602 2260)
Links: Report (pdf) | Summary (pdf)
Date: 2004-Feb
A research report looked at how older people were involved in the planning, delivery, monitoring and evaluation of public services throughout Scotland, and the future involvement of older people in community planning.
Source: Belinda Dewar, Chris Jones and Fiona O May, Involving Older People: Lessons for community planning, Scottish Executive (web publication only)
Date: 2004-Feb
An article called on the government to rethink its policy on public involvement in healthcare strategy. It said that, although the government aimed to increase public involvement in healthcare policy making, there was little 'clarity and consensus' about what this meant, or whether the measures proposed would engage the public effectively.
Source: Dominique Florin and Jennifer Dixon, 'Public involvement in health care', British Medical Journal, 17 January 2004
Links: Article | BMJ press release
Date: 2004-Jan
A report examined how first-wave applicants for National Health Service trust foundation status were involving their local community and reaching out to excluded groups.
Source: Ros Levenson, Public Involvement Among First Wave Applicants for Foundation Trust Status, Sainsbury Centre for Mental Health (020 7827 8352)
Links: Report (pdf)
Date: 2004-Jan