Who are the real experts

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.

• Who decides on the questions to be asked?
• Who designs the research briefs?
• Who carries out the “fieldwork”?
• Who analyses and interprets the findings?
• Who talks about it, shares the outcomes, presents them, writes
  about them and where?
• Who suggests what further questions should be asked and
  followed up as a result of this contribution to the knowledge
  base?

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:

• Little user-led research.
• Little action research or participatory approaches.
• A predominance of the use of the “scientific method” and
  quantitative approaches.
• A shortage of projects with a core aim of ensuring tangible
  benefits to older people and making a positive difference to their
  everyday lives in a way that empowers them by addressing issues
  that they have identified for themselves.

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:

• Why is research dominated by approaches that tend to work
  against a leading role for older people themselves?
• We rely on “experts” to design and deliver the projects – are
  we the experts? Do we know best, in terms of framing the
  questions?
• Why do we continue to accept the minimal involvement of older
  people in local government decision-making?
• Are our perspectives as professionals distorted by the needs of
  ensuring that our respective employing organisations continue to
  function?

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