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SCIE Birmingham 14/06/2007
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The participation of adult service users in developing social care
Jennifer TaylorVic ForrestJo Moriarty
SCIE Birmingham 14/06/2007
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What we are going to do
WelcomeThank you for coming to this seminar
Short presentations fromJenniferVicJo
Time for us all to share our ideas and discuss
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Not everyone involved is here today
This is the work of a team from: King’s College LondonShaping Our LivesCentre for Citizen ParticipationRace Equality FoundationRoyal Free and University College School of
Medicine
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What we did
Shaping Our Lives organised two meetingsThey wrote a report of what people said
People organising services helpedThey told us what they did and how they
helped service users to participateWe read what other people had writtenWe put together everything we learned in
one report
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Ground rules (summary)
Jennifer will read out ‘ground rules’: Shaping Our Lives think that in meetings we
should all…Respect and value our different opinionsOnly talk one at a timeUse simple words and no abbreviationsTry and talk slowly Ask people to repeat things that are unclearDon’t use personal names when talking about
what we have said in reports or discussions
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Jennifer (1)
I would like services to changeI want the bullying to stopWe need to stand up to servicesPeople sometimes haven’t got funding
for transportSome services can be good; some are
badI like to have control over my life
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Jennifer (2)
I don’t like no one being nasty to me Good service staff are nice I feel in control when I get the right support
I feel in control of the book of the book I have done. The book is called ‘We are not stupid’
When I go to meetings with other people with learning difficulties
Good staff give you a better service Bad staff are not behaving well
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Vic
Supports people in different waysNeed to think about the help people
need to participate
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Need for big changes
We found it helpful to think about participation being like a jigsaw
STRUCTURE
REVIEWPRACTICE
CULTURE
Wright et al., 2006
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Culture
Describes the way that people usually behave Jennifer’s example of people saying nasty things
Some people might need training Service users can help with training
Service users are experts People should recognise how much service users
know If service users have more control, they can say
what people should and shouldn’t do
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Structure (1)
This covers all the things that make it more difficult for people to participate Jennifer’s example of transport
Need to plan in advance Choose venues carefully Send out (short) papers before meeting Have people who can help with explanations
Pictures, interpreters Set aside time for service users to say what they
want to say Control of agenda
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Structure (2)
Make it easier for people to join in meetings ‘Ground rules’
‘Excluding users deliberately [by using jargon is] a form of bullying. We show them a red (a warning) and yellow card (to stop them) at our meetings if they do that in their presentations’
Stick to time Make sure people don’t lose out financially
Plan budgets to cover travel and support costs Fees can be complicated but this should not be used as
an excuse Provide training to help people participate
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Practice (1)
The way people behave can make it a good or bad experienceJennifer said that ‘good staff’ are friendly
Need for ‘atmospheric access’Need different types of participation
Vic’s example of different types of supportNeed to make it more fun
Stories, photos, as well as questionnaires
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Practice (2)
‘Day to day’ participation is importantJennifer’s example of people saying ‘half
and half’ about their control over their lifeHarder to achieve than holding meetings
Funding for ‘forums’ so people can look at what happens every day
Need to think about support needsLanguage and communication
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Review
Review means looking to see what has changed and if not why not Jennifer said ‘not sweeping things under the carpet’
Some organisations found it hard to go over what they had done Knowing how to do it and having the money to do it
were problems
Others had systems Service users sometimes included in this work
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What we concluded (1)
Things have improved but it’s not perfect It’s not about what we do but what happens
as a resultOrganisations and professionals often
think in terms of meetingsNot everyone likes meetings
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What we concluded (2)
They know what to do but don’t always do it Can underestimate level of skills needed (Vic)
Not just about social care and health services Housing and transport Attitudes in society (Jennifer)
Participation and quality are not always linked but they should be
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Guide will give you
Ideas from service users on what to doAction points
Summaries of what researchers (including service user researchers) have writtenMany are available free on the web
Ideas from organisations about they have done
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Thanks
Thank you for listeningThanks to everyone who helped with the
guideThanks to SCIE for funding the guide