Definition of user involvement

1. Definition of user involvement • When users, carers and the public are involved in discussing and making decisions in a genuine partnership with health and social services staff about: • their own health or social care • service planning or service improvement • research and development activity • It is more than being advised or consulted by staff, or participating in a pre-set process - it sometimes mean having independent control over health and social service delivery and decision-making • Most often it means working with health and social services staff 1A

2. Working with each other • Users, carers and the public can work with health and social services staff as partners at all levels of service in: • making decisions about an individual’s personal care • service planning and improvement - how to design, run, improve and monitor services • research and development activity – how to evaluate existing services, and research new issues to guide good practice in services 1B

3. Health and social services staff must recognise… • Health and social services exist to serve the public • To help people have good health and well-being • To help them recover or manage their health or social problem well if they cannot fully recover • Meeting the needs of users and carers should drivewhat happens in health and social services • Users and carers have expert knowledge about their health and social situation and it is just as important as professional knowledge 1C

4. Health and social services staff must recognise… • If they learn about the experiences that users, carers and the public have with health and social services, then they can do a better job of improving and expanding services • Users, carers and the public are a very diverse group – what will suit one person will not always fit for another person 1D

5. Experiences of different groups • We all need to learn about the experiences of different groups - this includes differences based on: • age • gender • cultural identity • living situation • socio-economic status • sexual orientation • type and degree of health problem. 1E

6. Principles of user involvement • When users, carers and the public work in partnership with health and social services, you need to expect uncertainty because: • You will not always be able to predict what will happen because people bring different expectations and ideas to the partnership – having some uncertainty is OK • User involvement work will require services to change the way things have usually been done – this could mean some or many things changing 1F

7. Principles of user involvement • Staff need to understand user involvement to do it well and to manage change – they need to be supported to do this so they stay positive and learn • Good leadership will help services accept user involvement – there must be support from the top • User involvement must be built from the ground up: • what you learn about users, carers and the public’s experiences of service needs to influence day to day service practice through to management decisions 1G

8. Principles of user involvement • Relationships are the key – everyone involved needs to work on their people skills • Relationships depend on good communication • Good communication happens when there is trust, so you need to build trust between people • Do not rely on just one approach – when you have several ways of tackling something you usually do a better job 1H

9. Why is user involvement important? • In a democratic country, like the UK, you have a right to be involved as part of the political process • User involvement makes services more responsive to the needs of users carers, and the public • this means they are also more respectful 2A

10. Why is user involvement important? • User involvement improves the quality of services – this includes what is offered, how it is offered and who gets access to services • User involvement leads to better outcomes for users and carers – if this happens then: • users and carers are better informed about health and social services issues • health and social services staff can work with more people, do more work to prevent health problems or deal with them early before they get worse 2B

11. Why is user involvement important? • User involvement can mean users, carers and members of the public feel empowered – this means when you feel that you: • are important, capable and valuable • have the ability and confidence to speak up and do things for yourself • are confident to speak or do things on behalf of others if they have given permission to do this • In short, being empowered is when you feel you can stand up for yourself, be heard and get things done 2C

12. Example 1: Involving Older People in Social Services • In October 2001, Worcestershire Social Services employed an ‘Involvement Officer for Older People’ • Several new services for older people have been set up • There are now 8 Older People’s forums within the Worcestershire area. Each forum includes: • older people from the local community, and • a health and social services staff member from: • the ‘Age Concern’ charity • the County Council • Social Services • the Primary Care Trust 2D

13. Example 1: Involving Older People in Social Services • The role of the forums is to ensure older people within the local area have a say in how social services and the health services are run • The meetings take place once every three months - they are minuted and action plans made • Things that have altered due to the groups’ work are changes to: • day care – improved day care hours and activity options • home care – some housework is now done for users • meals on wheels – improved quality of service 2E

14. Example 1: Involving Older People in Social Services • Forum members are consulted about the needs of older people and work as part of a group to improve services • They were involved in pressure groups that: • forced Social Services to not close a Residential Home for people with dementia in Bromsgrove • kept a bus route on in Droitwich • created access for disabled people at Evesham train station • stopped the closure of a Hospital in Pershore and Minor Injuries Unit in Bromsgrove • prevented GP surgeries from moving in Malvern 2F

15. Example 2: National Childbirth Trust and ConNeCT • A user-led organisation for pregnant women during their childbearing years • Supported by the Royal College of Midwives • It gives evidence-based information to women during pregnancy and throughout the postnatal period so they can make good decisions for themselves and their babies 2G

16. Example 2: National Childbirth Trust and ConNeCT • ConNeCT is special part of the NCT - it trains midwives to set up ‘Maternity Services Liaison Groups’ • These are women’s forums to ensure maternity services are user-led. Each hospital/trust should have a MSLC group including: • midwives • women • obstetricians • maternity managers 2H

17. Department of Health’s reasons for supporting user involvement • Seeking the views of others and having mutual regard for them is an important element of planning • Services can be designed and adapted to respond better to people’s needs • A consultation allows alternative proposals to be developed • Consultation also demands that proper time and thought is given to the views of patients and the public on a proposal and develops an evidence base for important decisions 2I

18. Department of Health’s reasons for supporting user involvement • The experience and knowledge of patients, the public and local communities can be used to benefit others • Better decisions are made because more people’s views, perspectives and suggestions are heard • Major decisions are more transparent and the process for reaching them is understood • Trust is built between communities and the health or social service 2J

19. Outcomes from user involvement • When health and social service staff work in partnership with users and carers, then users and carers: • Are more satisfied and less anxious • Are more likely to make positive health and personalchanges to improve their situation • Stick with these changes more easily • Are more likely to take medication if that is needed • Have fewer service visits • Have better physical and mental health – they recover more quickly or can prevent things getting worse 2K

20. Outcomes from user involvement • “User consultants can be involved as employees, trainers or researchers without detrimental effect” to themselves or health and social service staff • User consultants who train health and social services staff have a positive influence on trainee attitudes • When user consultants do not have decision-making roles in partnership with staff, then their influence depends on how much managers listen to them • if staff decide not to listen, this undercuts user involvement 2L

21. Outcomes from user involvement • User involvement improves the quality of research because user consultants: • identify issues that are important to users, carers and the public • emphasise important topics and questions • influence how research is designed and carried out • are better able to discuss and review service practice • by working in partnership with staff, bring more than one set of expertise to the issues • can help share the learning gained from research with a wider range of people 2M