21
London Visual Impairment Forum ‘Beyond the Usual Suspects’ Towards Inclusive User Involvement By Shaping Our Lives Becki Meakin 13 th December 2013
London Visual Impairment Forum
‘Beyond the Usual Suspects’
Towards Inclusive User Involvement
By Shaping Our Lives
Becki Meakin
13th December 2013
Ground Rules• Turn off mobile phones
• Introduce yourself
• Respect people’s opinions
• Listen to each other and do not interrupt
• Speak clearly, one at a time
• Use plain and simple English, do not cover your mouth
• Avoid abbreviations
• Do not refer to people outside of the meeting
• It is okay to leave the room at any time
Shaping Our Lives Vision
:A society which is equal and fair where all people have:
• the same opportunities, choices, rights and responsibilities,
• choice and control; over the way they live and the support services they use.
We aim to:
Improve the quality of care and support people receive by:
• Supporting and promoting local user involvement
• Giving a shared voice to user controlled organisations
• Enabling service user involvement at a national level
• Enabling groups to link to other user controlled groups
• Work in an equal and accessible manner.
What we do
• User involvement: policy and planning
• User research: to inform national policy makers
• User-led training: inclusivity and diversity
Beyond the Usual Suspects
How do we make user involvement in service planning and delivery
inclusive and ensure diversity?
What is user involvement?
• The age of involvement
• How we play an active part in getting change
• How we make a difference
• How we improve our lives to give us more control
Not everyone has an equal chance, additional
obstacles in life lead to additional barriers to
involvement.
Getting user involvement right
“User involvement? Don’t make me laugh. It’s
just the same old people who go to most
meetings, look at who takes part in most
consultations and it’s the same folk who do the
talking. It’s middle aged, middle class, confident,
white, able-bodied blokes. What good is that?”
Why is inclusion an issue?• Involvement allows people’s voices to be heard so
they can have more say in society
• It’s an opportunity to express views, particularly for
disadvantaged groups
• If only some voices are included, it reinforces barriers
for others
• An equal chance to be heard, prevents discrimination
“The whole point of involvement is to listen
to people who don’t get listened to. If you
get left out of that, then that’s saying
something!!”
Who especially gets left out?Evidence from Beyond the Usual Suspects highlightsa wide range of service users linked to:
• Equality issues• Where people live• Communication issues• The nature of impairments• Unwanted voices
Not just the usual suspects, older people and peoplefrom BME communities.
Excluded byEquality issues:• Gender• Culture• Ethnicity• Belief• Sexuality• Age etc.
Where people live:• Homeless people• People in residential services• People in prison in the penal system• Gypsies and travellers
Excluded byCommunication issues:
• Sensory impairment• People with no verbal communication• People for whom English is not their first language.
The nature of impairments:• People with complex and multiple impairments• Unwanted voices• Some points of view are more welcome than
others.
Sandwell Visually Impaired• Grew from 12 people in 2004 to over 500 members –
40% of registered VI people in Sandhurst
• They want to be treated equal\lily and fairly
• Ensure their views are heard by councils, health
providers etc.
• Consult with members
• Wellbring, health, educational, social and leisure
activities
What is meaningful involvement?
“I sometimes wonder, is it really any more than just thinking, what would make it possible for me to be involved and to think it was worthwhile?”
Barriers to involvementGatekeepers - don’t allow service staff and carers or family members to stand in the way
Solutions• Be persistent• Look for ways round them• Keep calm• Keep focussed on service users• Training
Barriers continuedFinancial - including travel, involvement costs, benefits and support needs.
Solutions• Meet expenses• Adopt a principle of paying for service user
skills• Seek expert advice on benefits• Budget carefully for inclusion.
Barriers continuedAccess - physical, environmental, communication and cultural
Solutions• It is a duty under equalities legislation • Ground rules• Check requirements in advance• Ask don’t assume
Positive meetings
• Accessible materials and venues• Sympathetic timing• Breaks with opportunity for food and drink• Diverse representation• Plain English formats• Listen and act on what you hear• Involve in all areas of learning practice and
evaluation/monitoring.
Why?
“I know why I wanted to get involved (with social services) because I like to help people with learning disabilities to stand up for themselves and take control of their own lives.”
