This document summarizes a study evaluating service user involvement in mental health services in the UK. The study used mixed methods including surveys, interviews, and ethnographic observations across three NHS Trusts. The surveys found that while most service users and staff had experienced some form of involvement, they differed in their views of the impact, with staff seeing more positive impacts than users. Interviews with managers found challenges in linking user feedback to commissioners and a lack of coordination between user groups. The study aims to provide best practice guidelines for involvement in an evolving healthcare system.

1. Evaluating National Developments
in Service User Involvement
How do managers and leaders in the NHS and social
care respond to user involvement in mental health
services in both its traditional and emergent forms?

2. Aims:
 To produce guidelines and best practice for service user
involvement in mental health in a dynamic and changing
environment.
 To contribute to the improvement of mental health service
delivery by maximising the potential for user input to service
user design, planning and evaluation.
 Key Audience: Mental health Service Managers, Front line
workers and Service Users

3. Study Sites and Methodology
 Three NHS Trusts: 2 Metropolitan Sites, 1 Rural Site
 Mixed Methods Study:
 Survey
 In-depth interviews
 Ethnographic observations
 User led organisations (ULOs)
 User governors
 Deliberative Workshop/Focus group

4. Survey
• Survey of 300 patients using mental health services and 150
front-line staff (Nurses and social workers)
• Convenience sample of patients from out-patient settings
and day services. Mixed sample of staff (on-line survey and
contact with CMHTs)
• Place results of qualitative components of the study in a
wider context of User Involvement in practice (extent and
impact)

5. Survey Results
Service users Staff
 46% had experience of SU activity • 57% of staff involved in some form of
SUI activity
 People involved in SUI more likely to
• Social Workers and younger members
be in long term contact with services
of staff more likely to have experience
of involving service users
 User Involvement in shaping
community services seen as most • User involvement in Training of Staff
likely activity to be effective seen as most likely activity to be
effective
 Service Users less likely to report • Difference in staff and service user
positive impacts of SUI than staff views of positive impact of SUI in
training staff (68% versus 18%)
• Both staff and service users are least likely to have experienced positive impact
of SUI in commissioning services (19% and 15%)

6. Benefits of SUI
High level of agreement about reasons and benefits of SUI
Service users Staff
Having a say/ being included Having a say/ being included
Improvements in services Personal benefit self-esteem/
recovery
Personal benefit self-esteem/ Improvements in services
recovery
Opportunities for social Patients know more about
contact/ group services
Acquisition of new skills Other

7. Ethnography and Interviews
 In depth interviews with senior managers and professionals:
 Commissioners
 Service Managers
 Trust Directors
 Senior Clinicians
 Team Managers
 Ethnographic observations
 User led organisations
 User governors

8. Current Context of Mental Health
Service Delivery:
 Clinical Commissioning Groups
 Trust expansion
 Provider monopoly or diversification?
 Personalisation
 Payment by results
 New service models/service re-design/recovery
 Cuts
 Re-organisation
 SUI ‘mainstreamed’

9. User Involvement Mechanisms
 User groups  Training
 User governors  Peer support
 Commissioner initiated  User provided services
stakeholder forums  Third sector organisations
 Consumer feedback:  PALS
postcards, surveys, ICT, forums  PPI forums, LINks, Healthwatch
 Service based forums  GP practice groups
 Research/user focused monitoring  Locality based health action
groups
 Recruitment

10. Service user Perspectives
(User governors and User Led Organisations
 Where do we exercise most influence?
 Uncertainty about new mechanisms of user involvement?
 Need to be able to adapt and develop new relationships.
 Relationships not systems are key to effectiveness. “Go-to” individuals and
gatekeepers
 Staff pressures and changing relationships affecting SUI efforts.
 Value of research as focus for involvement – longer term impact?
 Satisfying commissioners rather than doing what users want.
 Top heavy emphasis of involvement initiatives

11. Service user Perspectives
(User governors and User Led Organisations)
 Difficult for ULOs to have a meaningful and consistent working
relationships with the statutory services.
 Dealing with multiple structures of authority and gatekeepers
 User involvement can be seen as somebody else’s job
 Official channels vs tacit learning. Challenging for small under-
resourced organisations and activists

12. Organisational Perspectives
(Senior managers)
 How does feedback at front line delivery level get back to
commissioners?
 We’re generating too much feedback without systems to use this.
 ‘Formal’ mechanisms such as Trust Boards with SU governors can
complicate locally developed SUI mechanisms.
 Different ULOs take different positions; how do we know which
groups to approach? Can’t we get them to co-ordinate?

13. Organisational Perspectives
(Senior managers)
 The system is too big, the organisation is too complex, SUI can only
work well in specific locations.
 We need to work out how to link SUI at operational level with
strategic level. There’s a gap in the middle.
 We’re under pressure (cuts, evidence based practice, market
development, commissioning, service re-configuration, income
generation), there is not much influence that service users can have.
 Unsettling of relationships provide opportunities for user influence:
impact on commissioners.

14. Hierarchies of Discourse and Organisational
Non-Alignment
 Pressure on user group members to adopt corporate discourse.
Forms of feedback seen as ‘anecdotal’
 Managers - there is a complaints procedure
 SU groups becoming professionalised, learning
corporate/research language and becoming more effective and
influential
 Identity: Adaption through language vs Conveying the lived
experience of service users, issues of power.

15. Key points:
 ULOs will have to adapt but may be possible without losing all
principles
 SUI moving from collective to individual level?
 User governors/personalisation
 SU governors work best
 when accommodation is reached with ULOs
 when definite structures are in place
 when good relations are formed (Board meetings as opportunities for
networking)
 Are we witnessing the ‘death of the user movement’ as we knew it?

16. Evaluating National Developments in Service User
Involvement
 Further information:
 http://www.kcl.ac.uk/iop/depts/hspr/research/ciemh/sure/projects/Howdo
managers.aspx