Consumers’ views

Increasingly, user involvement and consultation are becoming
part of everyday work. So, they are not unusual or special anymore.
But are they more effective? Are they really integral to policy and
service development or still an appendix? If we are honest, too
often words such as “tokenistic” and “half-hearted” might fit all
too snugly for our comfort.

But what about user involvement and consultation that have been
taken seriously and have been invested with much time, resources
and commitment? Even here there is a standard design flaw.

Mike Wood, planning and partnerships officer with Staffordshire
social services department, says: “In practice, user involvement
and consultation are invariably directed, if not controlled, by
non-disabled people who are employed, or commissioned, by statutory
agencies.”

He continues: “In fact, commissioners and researchers themselves
retain a position of power and authority over the research process
and users will seldom feel empowered by consultation or
involvement. And what is more, it is also likely that research
findings will be interpreted from non-disabled perspectives and
that this may reduce their validity further.”

To challenge this, in February 2001 Staffordshire’s welfare to work
joint investment plan (JIP) steering group entered into a
partnership with the centre for health policy and practice, school
of health, Staffordshire University. The partnership graduated
three months later with the setting up of the “consumers as
researchers” course at the university, teaching research skills for
disabled people living in Staffordshire.

The course – made up of 10 sessions – first kicked off with eight
students whose disabilities included physical disabilities, sensory
impairments and mental health needs. And they rose to the task
according to student Joan Monkman: “There are a lot of people out
there who have these life skills and it was very good that they
could be brought together under one roof.” Fellow student Helen
Burrell agrees: “It’s all about doing it for ourselves and not
others doing what they think is best.”

The sessions included designing the research study, putting
together questionnaires, interviewing skills, carrying out the
research, and compiling results.

The students worked on proposals for research on disability and
employment based on what they believed to be the most important
areas. They focused particularly on identifying barriers to
employment and solutions for overcoming or reducing these.

“The students were paid an hourly rate (plus expenses) for their
work and some have been successful in securing longer-term
employment,” says Wood.

Their research is to be published later this year, but they have
already presented their findings at a conference – attended by
about 70 people – in October 2002. The welfare to work JIP steering
group -Êwhich includes various local employers such as social
services, health services, Job Centre Plus, Learning and Skills
Council, Connexions and voluntary sector organisations – intend to
use the findings to dislodge the barriers to employment for
disabled people in their own workplaces. It is hoped that other
employers in Staffordshire will recognise that the findings are
uniquely from a disabled person’s perspective and follow
suit.

The disabled students controlled the entire research process and
decided research priorities and methods, selecting the sample,
carrying out the survey and compiling and presenting the
results.

And the scheme can proudly tick the box that asks whether this is
more than just a tokenistic gesture, as a new group of students
began in November 2002 to build on the research and carry out new
surveys. Being half-hearted is not open to question.

As Burrell says: “A disabled person who is totally dependent on
equipment, so long as they have a computer and modem could either
become a researcher or be researched – the only limitations are in
other people’s minds and agendas.”

For more information contact Mike Wood on mike.wood@staffordshire.gov.uk

BACKGROUND

Scheme: Consumers as researchers

Location: Staffordshire

Staffing: Five tutors

Inspiration: Reflecting on ways to improve user consultation

Cost: £17,000 for the first student group, increased to
£20,000 for the group starting in November 2002 (this does not
include the cost of tutors’ time).