SCIE Birmingham 14/06/2007 1 The participation of adult service users in developing social care...

SCIE Birmingham 14/06/2007

1

The participation of adult service users in developing social care

Jennifer TaylorVic ForrestJo Moriarty

SCIE Birmingham 14/06/2007

2

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

SCIE Birmingham 14/06/2007

3

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

SCIE Birmingham 14/06/2007

4

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

SCIE Birmingham 14/06/2007

5

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

SCIE Birmingham 14/06/2007

6

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

SCIE Birmingham 14/06/2007

7

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

SCIE Birmingham 14/06/2007

8

Vic

Supports people in different waysNeed to think about the help people

need to participate

SCIE Birmingham 14/06/2007

9

Need for big changes

We found it helpful to think about participation being like a jigsaw

STRUCTURE

REVIEWPRACTICE

CULTURE

Wright et al., 2006

SCIE Birmingham 14/06/2007

10

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

SCIE Birmingham 14/06/2007

11

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

SCIE Birmingham 14/06/2007

12

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

SCIE Birmingham 14/06/2007

13

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

SCIE Birmingham 14/06/2007

14

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

SCIE Birmingham 14/06/2007

15

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

SCIE Birmingham 14/06/2007

16

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

SCIE Birmingham 14/06/2007

17

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

SCIE Birmingham 14/06/2007

18

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

SCIE Birmingham 14/06/2007

19

Thanks

Thank you for listeningThanks to everyone who helped with the

guideThanks to SCIE for funding the guide