1. SCIE Birmingham 14/06/2007 1 The participation of adult service users in developing social care Jennifer Taylor Vic Forrest Jo Moriarty

2. SCIE Birmingham 14/06/20072 What we are going to do Welcome Thank you for coming to this seminar Short presentations from Jennifer Vic Jo Time for us all to share our ideas and discuss

3. SCIE Birmingham 14/06/20073 Not everyone involved is here today This is the work of a team from: King’s College London Shaping Our Lives Centre for Citizen Participation Race Equality Foundation Royal Free and University College School of Medicine

4. SCIE Birmingham 14/06/20074 What we did Shaping Our Lives organised two meetings They wrote a report of what people said People organising services helped They told us what they did and how they helped service users to participate We read what other people had written We put together everything we learned in one report

5. SCIE Birmingham 14/06/20075 Ground rules (summary) Jennifer will read out ‘ground rules’: Shaping Our Lives think that in meetings we should all… Respect and value our different opinions Only talk one at a time Use simple words and no abbreviations Try and talk slowly Ask people to repeat things that are unclear Don’t use personal names when talking about what we have said in reports or discussions

6. SCIE Birmingham 14/06/20076 Jennifer (1) I would like services to change I want the bullying to stop We need to stand up to services People sometimes haven’t got funding for transport Some services can be good; some are bad I like to have control over my life

7. SCIE Birmingham 14/06/20077 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

8. SCIE Birmingham 14/06/20078 Vic Supports people in different ways Need to think about the help people need to participate

9. SCIE Birmingham 14/06/20079 Need for big changes We found it helpful to think about participation being like a jigsaw STRUCTURE REVIEW PRACTICE CULTURE Wright et al., 2006

10. SCIE Birmingham 14/06/200710 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

11. SCIE Birmingham 14/06/200711 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

12. SCIE Birmingham 14/06/200712 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

13. SCIE Birmingham 14/06/200713 Practice (1) The way people behave can make it a good or bad experience Jennifer said that ‘good staff’ are friendly Need for ‘atmospheric access’ Need different types of participation Vic’s example of different types of support Need to make it more fun Stories, photos, as well as questionnaires

14. SCIE Birmingham 14/06/200714 Practice (2) ‘Day to day’ participation is important Jennifer’s example of people saying ‘half and half’ about their control over their life Harder to achieve than holding meetings Funding for ‘forums’ so people can look at what happens every day Need to think about support needs Language and communication

15. SCIE Birmingham 14/06/200715 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

16. SCIE Birmingham 14/06/200716 What we concluded (1) Things have improved but it’s not perfect It’s not about what we do but what happens as a result Organisations and professionals often think in terms of meetings Not everyone likes meetings

17. SCIE Birmingham 14/06/200717 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

18. SCIE Birmingham 14/06/200718 Guide will give you Ideas from service users on what to do Action points Summaries of what researchers (including service user researchers) have written Many are available free on the web Ideas from organisations about they have done

19. SCIE Birmingham 14/06/200719 Thanks Thank you for listening Thanks to everyone who helped with the guide Thanks to SCIE for funding the guide