Rosemary Chesson, Louise Mitchell, Catherine Westwood Folk.us Revealed Conference March 2005 The untold story

1. Folk.us Evaluation Rosemary Chesson, Louise Mitchell, Catherine Westwood Folk.us Revealed Conference March 2005 The untold story Carers Research Partnership

2. Carers Research Partnership

3. Aims of evaluation • To provide information about the activities of Folk.us (and their outcomes) so as to inform decisions about Folk.us direction in the future. • 2. To inform policy, practice and other initiatives in this • field. Carers Research Partnership

4. “Tupela Meri” Carers Research Partnership

5. Evaluation design • Two complementary studies: • (1) activity study (quantitative) • (2) outcomes study (qualitative) • Included e-panel (service users and carers) Carers Research Partnership

6. Main activities Management of network Training/events Research/projects Publications Carers Research Partnership

7. Documents accessed n = 120 Carers Research Partnership

8. Who was involved in activities? • Key role of Management Steering Group • Professionals and users • NHS rather than social care (1° rather • than 2°care) • Statutory sector rather than voluntary sector • Service users rather than carers Carers Research Partnership

9. Folk.us: members of the network % n =148 n = 229 Carers Research Partnership

10. Activities: meeting Folk.us objectives • review strategic aims of Folk.us • develop work of Folk.us • support development of collaborative research with users • form links with national & regional organisations • promote mutual learning between services • disseminate the outputs of Folk.us • All objectives met Carers Research Partnership

11. Outcomes study • Measuring Impact • time span: 5 yrs – long enough? • size of resource • on individuals/cultures? • locally/nationally? • how to detect? • change attributable to external environment? • positive or negative impact? • where they have had an impact? Carers Research Partnership

12. Carers Research Partnership

13. Measuring impact cont... • Outcome study (interviews) revealed • different perceptions of Folk.us (what it is) • different expectations (includ. of achievement) • differences both within and between ‘groups’ • View expressed: the process and not the outcomes is important. Carers Research Partnership

14. Main achievements • Folk.us main achievements: • ‘being there at the start’ • surviving: ‘kept going with a positive attitude’ • doing all it has with a limited number of personnel • legitimising the idea of user involvement in research • bringing user involvement into the public domain • Cont.. Carers Research Partnership

15. Main achievements cont.. • successful conferences • own research esp. Small Voices, Big Noises • its publications (Research Governance leaflet) • funding small user-initiated projects • providing useful training sessions Carers Research Partnership

16. Views on impact ‘bringing .... two worlds (medical and social care research) together harmoniously.’ ‘..... It can speak to user organisations in a way which most university departments can’t do.’ ‘Goodness! Funding, actually! For us it has to be that was the biggest personal impact.’ Carers Research Partnership

17. Views on impact cont.... ‘They have started the process of change in the medical people down here ...’ ‘.... So I think not one thing but chipping away at various fronts’. Carers Research Partnership

18. Views on impact: summary • professionals rather than service users were more likely to • query impact • people from secondary rather than primary care more • likely to doubt they had had impact • some respondents believed currently Folk.us had less • impact locally than in the past Carers Research Partnership

19. Impact academic researchers • Conflict highlighted between user involvement in research and university and NHS research conditions and requirements regarding • funding streams (predetermined priorities) • difficulties in obtaining funding • research governance (liability) • ethical approval • ‘doctor-led’ NHS research culture/research paradigm • the Research Assessment Exercise • research training provided by universities Carers Research Partnership

20. Service users’ views of impact • Service users emphasised: • the impact that involvement with Folk.us had had on them • personally • ‘It has made me feel a really valued person again!’ • the linkages with services and impact of research on services • ‘you are still an active community member ... I find it very • rewarding .... It is a two way partnership. You have got to • put in, in order to get back.’ Carers Research Partnership

21. Future directions for Folk.us • focusing on local needs • obtaining long term funding/reducing reliance on statutory • funding • - working with user-orientated organisations • helping to change the culture of clinicians • reach out more to grass roots service users Carers Research Partnership

22. Conclusions • Evaluation revealed • - complexity of achieving user involvement in research • complexity in evaluating impact • scope and scale of achieving user involvement (Folk.us • main focus on NHS) • resources needed for the task Carers Research Partnership

23. Concluding remarks • ‘There are people that come to the lectures and meetings and there are people that come and are influenced by the people at the meetings – who are probably the main instigators of any change in the health service.’ Carers Research Partnership

24. Concluding remarks • ‘I suppose my hope is that they are encouraged to continue on in that vein because its a slow burn thing. Really one day it might ignite, but you probably have to fan the embers for quite a while actually. It would be a shame to pull the plug on something that is probably getting more widely known and perhaps producing some useful results.’ • I Carers Research Partnership

25. Thank you • to all participants • to INVOLVE for funding Carers Research Partnership