2. London Visual Impairment Forum ‘Beyond the Usual Suspects’ Towards Inclusive User Involvement By Shaping Our Lives Becki Meakin 13 th December 2013

3. 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

4. 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.

5. 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.

6. What we do User involvement: policy and planning User research: to inform national policy makers User-led training: inclusivity and diversity

7. Beyond the Usual Suspects How do we make user involvement in service planning and delivery inclusive and ensure diversity?

8. 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.

9. 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?”

10. 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

11. “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!!”

12. Who especially gets left out? Evidence from Beyond the Usual Suspects highlights a 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 people from BME communities.

13. Excluded by Equality 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

14. Excluded by Communication 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.

15. 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

16. 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?”

17. Barriers to involvement Gatekeepers - 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

18. Barriers continued Financial - 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.

19. Barriers continued Access - physical, environmental, communication and cultural Solutions It is a duty under equalities legislation Ground rules Check requirements in advance Ask don’t assume

20. 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.

21. 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.”

22. Thank you If you require more information please contact: Becki Meakin becki@shapingourlives.org.uk 07956 424511