At a glance 61: Co-production and participation: Older people with high support needs

Published: October 2012

This At a glance briefing gives a summary of a review of literature and a small-scale survey of good practice on the participation and co-production of older people with high support needs. The report brings together the most recent and relevant research findings and development initiatives and identifies:

barriers to the participation of older people with high support needs and some solutions
effective practice initiatives for increasing the participation of older people with high support needs
new approaches to involve older people with high support needs, including the use of technology.

The briefing should be of particular interest to:

commissioners of social and health care services
people working in housing provision
service users and others developing the co-production/participation agenda in care provision and service development.

Report 61: Co-production and participation: Older people with high support needs, which also provides a policy and legislation overview; a discussion of high support needs and a resource section, can be accessed on the website.

Key messages

Service providers need to understand that as the demographic of this group is changing and growing, and they need to adapt their services, and their co-production initiatives, accordingly.
In 2007, 1.3 million of the population were aged over 85 and around 40 per cent had some form of severe disability. This group is projected to grow to 3.3 million by 2033.
The group of older people with high support needs is becoming increasingly diverse with increasing representation of people from black and minority ethnic communities, people from lesbian, gay, bisexual and transgender communities and groups such as people with learning disabilities living longer.
Increasingly, older people with high support needs live in their own homes and are not necessarily housebound.
Service user and carer participation is high on the agenda in social care but the practice, information and guidance around older people with high support needs remains limited.
There are examples of good practice in co-production and participation with older people with high support needs, which are identified in this report and show how barriers to the development of co-production and participation can be overcome.
The benefits of involving users in their own care decisions and service improvement are referenced in the report. It is fundamental to a sense of wellbeing for the individual and results in better quality in both policy and service development and also has benefits for everyone involved in social care provision including practitioners and carers.

Service user and carer participation is high on the agenda in social care but the practice around older people with high support needs remains limited.

Background

The number of people aged over 85 is rapidly increasing, with women constituting 75 per cent of this group. The proportion of this group who have high support needs and the average years spent with a disability are also likely to increase as a result2. There are wide variations in older people’s social and financial circumstances, and there are also small but significant numbers of black and minority ethnic (BME) and lesbian, gay, bisexual and transgender (LGBT) older people (1).

The report found that the evidence base on this topic was limited and reflects the challenge of increasing co-production and participation by older people with high support needs. In these circumstances, examples from practice become particularly important as the basis for better understanding of this increasingly relevant topic. The centrality of this group of service users as the largest group of consumers of social care mean that it is essential for everyone from social care policy makers to frontline practitioners to consider these issues.

Barriers to participation are primarily to do with negative and ageist attitudes to older people.

Benefits of participation

Genuine participation means having a voice – and being heard – in key decisions that affect your life chances. Older people can take part either as individuals or as members of whole communities. The opportunity to get involved in care decisions and service improvement issues is fundamental to an individual’s sense of wellbeing and enhanced self-confidence. (2)

Benefits to service providers include:
better outcomes of treatment and care (3)
services are more responsive to the needs of users
individuals and communities build up a sense of ownership of services (4)
users gain knowledge and self-confidence (11)
policy and service quality improves.5

Barriers to participation

Barriers to participation are primarily to do with negative and ageist attitudes towards older people and a lack of funding to support genuine, effective involvement.

Barriers to participation include:

lack of support for older people to develop personal skills such as confidence building and assertiveness (5)
no access to service information and support (8)
lack of transport and financial help to attend meetings (5)
inaccessible venues
organisational culture – a lack of effective leadership to develop a systematic approach to age equality
not enough training for staff in communicating with older people – particularly those with sensory impairments or dementia, who run the risk of being ‘written off’ (6, 7, 8, 9, 10)
older people in rural areas face particular challenges – including finding it difficult to organise as a group and individuals may experience difficulty finding peer support (11)
some methods for engaging with older people – newsletters, meetings and surveys for example – are inappropriate and do not allow for poor mobility, sensory impairment and poverty (6)
lack of consultation with black and minority ethnic communities mean that BME older people are doubly disadvantaged (12, 13)
failure of organisations to devolve professional power to individuals and communities and to support co-production. (14)

There are examples of older people being asked their opinion to produce better services.

Practice examples of participation and co-production

Two recent, major research programmes provide examples of good practice in the involvement of older people with high support needs and show how the barriers can be overcome.

The Office of Disability Issues’ South East Regional Initiative (15) was set up to:

provide change management support to three local authority areas aimed at increasing the voice, choice and control of older people with high support needs
produce a qualitative research study to capture the experiences of older people.

Its key findings showed that older people with high support needs wanted to:

live a normal life
maintain an individual identity
pursue meaningful personal networks
have hopes and aspirations for the future
retain a balance of power in personal relationships
have choice and control over finances.

These findings are closely reflected in the six ‘keys to a good life’ identified by the second example, the Joseph Rowntree Foundation’s (JRF) The Better Life Programme (2009–2013). (16) This used an action research approach to promote the quality of older people with high support needs. (17)

The JRF report’s small-scale practice survey identified a number of examples of co-production with older people with high support needs to produce better services. These include improving both sheltered and residential care environments, developing communication tools with people with dementia, promoting self-assessment processes and being involved in the evaluation of assistive technology. Such initiatives provide an opportunity specifically to include older people with high dependency needs

Campaigning groups of older lesbian, gay, bisexual and transgender (LGBT) people and older people from BME communities are also contributing to a wider understanding of this topic. One example is the BME Elders Forum. (18) working to establish a national forum to represent the interests of the full range of elders in BME communities. The Older LGBT Network (19) gives older people from LGBT communities the opportunity to make their voices heard and to share information.

Co-production (20) – where older people are working together with local authorities and voluntary organisations to plan, develop and evaluate services – is taking place at local level. There are also examples of county- and city-wide partnership groups, where older people are taking on a significant role.

Older people are working with local authorities and voluntary organisations to plan, develop and evaluate services.

The Dorset Age Partnership

This is a network of representatives from various older people’s forums and groups, and strategic leads and lead officers from Dorset County Council, the primary care trust, the district councils, police, fire and rescue services and voluntary organisations. It is the theme group for the Dorset Strategic Partnership but has been designed as a partnership body where older people are in the majority, and is always chaired by an older person. It has district/locality groups – also with majority older people involvement – which influence its strategy.

While these good examples exist, it is not always clear from references that older people with high support needs have been included, although they provide a good starting point to reflect this constituency.

References

Centre for Population Change (2010) Demographic issues, projections and trends: Older people with high support needs in the UK, York: Joseph Rowntree Foundation (JRF).
Evans, S. and Vallely, S. (2007) Social well-being in extra care housing, York: JRF.
Barnes, M. and Bennett-Emslie, G. (1997) If they would listen… An evaluation of the Fife User Panels Project, Edinburgh: Age Concern Scotland.
Ridley, J. and Jones, L. (2002) User and public involvement in health services: a literature review, Edinburgh: SHS Trust.
Carter, T. and Beresford, P. (2000) Age and Change: models of involvement for older people, York: JRF.
Branfield, F. and Beresford, P. (2010) A better life: Alternative approaches from a service user perspective, York: JRF.
National Audit Office (2010) Progress in improving stroke care, London: The Stationery Office.
Granville, G., Dorothy Runnicles, D., Barker, S., Lee, M., Wilkins, A. and Bowers, H. (2011) Increasing the Voice, Choice and Control of Older People with High Support Needs: A Research Findings Paper from the South East Regional Initiative (SERI) National Development Team for Inclusion (NDTi) and Centre for Policy on Ageing.
Older People’s steering group (2004) Older people shaping policy and practice, York: JRF.
Law, J., van der Gaag, A., Hardcastle, B., Beck, J., MacGregor, A. and Plunkett, C. (2007) Communication support needs: a review of the literature, Edinburgh: Scottish Centre for Social Research.
Thornton, P. (2000) Older people speaking out: developing opportunities for influence, York: JRF.
Bousetta, H. (2001) Extending democracy, participation, consultation and representation of ethnic minority people in public life, Bristol: Centre for the Study of Citizenship and Ethnicity, University of Bristol.
Policy Research Institute on Ageing and Ethnicity (2005) Black and Minority Ethnic Elders in the UK: Health and Social Care Research Findings, Leeds: PRIAE.
Doel, M., Carroll, C., Chambers, E., Cooke, J., Hollows, A., Laurie, L. and Nancarrow, S. (2007) Developing measures for effective service user and carer participation, London: SCIE.
South East Regional Initiative (SERI), NDTi and Centre for Policy on Ageing.
JRF (2009) The Better Life Programme (2009–2013)
Bowers, H. et al (2009) Keys to a better life, York: JRF.
BME Elders Forum
Older LGBT website
NDTi and Helen Sanderson Associates (2009) Personalisation – don’t just do it – co-produce it and live it!, Dorset: NDTi.