It should be obvious to professionals, politicians and the public that older people are the experts on their own situations and circumstances. Yet, despite a plethora of government initiatives and an apparently genuine commitment to older people’s involvement from many quarters, there is insufficient progress in engagement with older people in a way that shapes and influences local commissioners in service development.
As Bill Kilgallon, chief executive of the Social Care Institute for Excellence, says: "It may seem obvious to say that users are experts on their own circumstances and needs, but too often that simple fact doesn’t translate into social care practice."1
Policy messages are not being routinely translated into day-to-day practice that changes the way social care services are experienced. This is also the case in the way that research agendas are being developed and research questions framed.
Here, we explore the position of older people in influencing service planning, consider the gap between existing research knowledge, policy guidance and its application, and raise some fundamental questions that policy makers, practitioners and researchers need to ask themselves.
Focusing on the research arena first, there are several questions we need to bear in mind.
In looking at most of the major research databases (health and social care, older people) and organisational research programmes with their many thousands of projects and papers, we find:
The guiding principle for research funding and design should be precisely the things which are so often absent. Older people are not setting the agenda, framing research questions or being given the opportunity to do so. At best they are spoken to as "subjects" but often play no direct part in research.
This is also true of much of the work undertaken by some national voluntary organisations - an older person or two on a project advisory group is not enough. In April last year Mary Sullivan, referring to her experience of completing her PhD thesis, stated: "Responses from carers were particularly disturbing. Their sheer anger forced me to question the benefits of research, the integrity of the researchers conducting it and those funding it. Have researchers failed carers in terms of taking advantage of their situation as merely something to describe, of providing empty promises to secure a sample and justify the use of their time and of negating their experiences by failing to use the outcomes to influence change?"2
Over the past five or six years government departments have stressed the need to involve all stakeholders from local communities and have promoted this in nearly every guidance document.
The Social Care Institute for Excellence suggests: "Service users should be involved and integral to, rather than being consulted about, any policy or practice changes. Service users want to be listened to, and be confident that their views will be acted on in some way. Service users should have as much information as staff…"3
There are examples of this occurring, but is not the general picture. More typical is the establishment of older people’s planning forums for councils or sometimes joint partnership planning forums across partner agencies.
Moreover, these groups are likely to be populated by older people’s representatives from local voluntary groups, and are rarely made up of a majority of older people. Routine participation of current service users - arguably the most disenfranchised - who can speak with authority about how they are experiencing current services is even more unusual.
There is also the continuing lack of a research culture within social services departments. They are not generally wedded to "evidence-based" decision-making at either a practice or a planning level. Management teams generally subscribe to the idea, but organisational restructuring and service reconfigurations are more likely to be driven by budgets, required efficiency savings and imperatives to meet national targets. A lack of widespread local evaluation and sustained intelligence gathering, whether through research or other forms of information exchange, reduces the opportunity for older people to become meaningfully engaged in the early stages of service planning and have that crucial dialogue to inform decision-making. Instead there is a sense of tokenism where older people are presented with virtually fully formed plans and invited to simply endorse these, or to engage in a little tinkering around the edges.
Part of ensuring meaningful engagement is a transfer of knowledge - what is being considered, who makes decisions. It is also about the transfer of skills, whether we are talking about the confidence to speak out in the typically formal settings in which forums often occur, or research skills to engage with one’s own peers and gain information about matters key to the needs of local people.
This situation does not appear to be changing with any great pace. Researchers have just completed an assessment of the impact that service user involvement has had on positive change in service delivery for older people.4 Though they found formal involvement of some kind was widespread, pinpointing significant effects of such involvement has proved difficult. They note that in many cases local practices work against this possibility.
What evidence of progress there is tends to be centred on time-limited projects with ring-fenced funding, generally on the periphery of mainstream service delivery and funding commitments.
This brings me to a consideration of the Better Government for Older People (BGOP) programme and to the establishment of the Older People’s Advisory Group (OPAG) - a creditable achievement which I fully support.5
However, from an outsider’s perspective, the approach that BGOP appears to be taking raises several questions. The nature of the relationship of the different parts of the organisation is not clear. Why do BGOP and OPAG have different sets of strategic objectives? Both are represented, as if separate entities, on the government partnership group to exert influence over government decision-making around the policy on ageing. The extent to which those objectives are driven by their subscribers’ concerns, or those of local groups of older people and the relationship national OPAG has with local and, now, regional groups, is also unclear.
It is not clear how these elements come together to ensure that BGOP’s goals are achieved and that older people’s groups
in the network are sufficiently hooked into both the national BGOP programme and are occupying the central place in decision-making locally.
These points are not simply criticisms of the initiative, but emphasise our need to examine the details of how these ideals are being played out. Process is important. Shouldn’t its role be a simple one, centred on the support of local groups to maximise their effectiveness in shaping the local agenda for action and effecting change in the direction that they want? This brings me back to the central role of giving practical support and promoting the transfer of knowledge and skills to enable older people to engage statutory bodies from a more powerful position.
We all have some tough questions to ask ourselves and need to take time to understand why many of us continue to operate in a way that does not do justice to what I’m sure we believe to be the right way to change things for the better, for and with older people.
Four more questions that should occupy our thoughts in addressing these issues:
According to Mervyn Eastman, BGOP’s programme director last year: "Deconstructing paternalistic constructs lets people in, they can be creative and develop their own constructs, they will then become us. Then we know we will have arrived."6
For me this means that we will only achieve what I’m sure we all want to achieve, by dropping the ageist assumptions that are holding us back from giving older people the space, time and support to make a difference, and to engage with us as equal partners.
Keith Sumner is senior policy officer at the Beth Johnson Foundation, a charity aiming to promote the value and role of older people within society.
References
1 B Kilgallon, "Man of Action", SCIE Update, vol 1 spring and summer 2003
2 M Sullivan, "An Affair to Remember", Generations Review, vol 12, no1, pp4-6, Lavenham Press, 2002
3 SCIE Update, vol 1 spring and summer 2003
4 K Janzon and S Law, Older People’s Influence on Social Care: Research Review on User Involvement in Promoting Change and Enhancing the Quality of Social Care, Commissioned by SCIE, forthcoming
5 Better Government for Older People, Older People at The Heart of Modernisation, BGOP, 2003
6 M Eastman, Engaging Older People, Integrating Housing Health and Care, BGOP/Capita Conference, 19 May 2003
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