1. Public versus Patient Representation Rosemary Chesson Health Services Research Group Faculty of Health & Social Care The Robert Gordon University

2. Background Professionals perceptions of patient involvement n Based on 2 LHCCs (Abdn & Abdnshire) n Random selection of qualified staff n Included 18 interviews 4 small group discussions 4 small group discussions 7 focus groups 7 focus groups n Interviews/Groups audiotaped

3. Findings n Patient & public involvement often blurred into one Its the same GP Its the same GP n Majority of staff defined involvement in terms of public involvement ie. public consultation n Concerns raised re representiveness of voices heard I can think of two or three people that would love to come in here and tell us how to run our practice GP I can think of two or three people that would love to come in here and tell us how to run our practice GP n Defined in terms of techniques e.g well… the thing that springs to mind is focus groups Nurse well… the thing that springs to mind is focus groups Nurse

4. Scottish Executive Services need to be responsive not just to the needs of individual patients but also to the preferences of the public at large To redesign services from the perspective of patients - and to reflect this in all aspects of health service planning communities want; and consulting them over proposals for change Designed to Care, 1997

5. Scottish Executive We value the NHS as a public service which belongs to the people. Patients, staff and communities have a right to be involved in decisions which affect them Our National Health, 1998

6. DoH (1998) argues its only through involving communities that a better understanding of how local services need to change & develop will happen NHS Executive, 1998

7. Patient Focus & Public Involvement A patient - focused NHS, therefore will: talk with USERS, the WIDER PUBLIC and COMMUNITIES

8. It is often helpful to distinguish between involving people as individual users/patients and carers, and involving them as groups e.g. users/patients groups or as citizens. Ridley & Jones, 2002

9. Terminology n People n users n public (wider public) n patients n citizens n community DICHOTOMY: INDIVIDUAL Vs EVERYONE

10. Disease:concerns only the individual patient Health:concerns everyone EVERYONE SHOULD BE INVOLVED It is the task of the whole of society rather than the domain of a single profession or party Laaser et al, 1985

11. The people have a right and duty to participate individually and collectively in the planning and implementation of their health care WHO, 1978

12. Definition of community Collections of individuals bound together by natural will and a set of shared ideas and ideals Aristotle

13. Patients vs Public n 72% who had used hospital care were satisfied n 56% who had not Harrison et al, 1997 Harrison et al, 1997

14. There can be no substitute for the real world knowledge of service users Herd & Stalker, 1996

15. Patients/Public: Who represents them? Its very difficult (to consult). There are people who have, who can act as agents for patients, who are not doctors. I think we should be using them. The Local Health Council is a prime example, elected representatives of communities are another group… Hopefully they will look at the spectrum of patients rather than just those people in pressure groups… its getting a balance. Probably 10% of the population will be very vociferous and 90% of the population are extremely apathetic. GP

16. A Survey a technique of data collection that is systematic and structured questioning, either by interview or by questionnaire, of a relatively large number of respondents.

17. A Sample The selection of some units of a population to represent the whole population (It is essential to attempt to ensure that the sample is as TYPICAL as possible)

18. Patient surveys Current users may differ from previous patient populations since n Diagnostic techniques change n procedures change n new demographic trends emerge n changes in policies regarding suitability/eligibility

19. Representation Guidance 2002 Initial stage of consultation process.. Key groups n user groups n drs & clinical staff n nurses & other prof staff n TUs n prof/al advisory cttees n Trusts n community groups n Local Health Councils/other patient rep groups n LAs

20. Consultation can produce results that do not represent the views of local people as a whole [!] It is.. very important to consider the make up of the local community and to avoid the risk of token consultation or involvement. Scottish Office Health Department. Consultation & Public Involvement in Service Change - Draft Interim Guidance, 2002

21. n No single form of participation or definition of community is adequate for general practice n Both are elastic and contested concepts Brown, 1994 Brown, 1994

22. Involving People When I use a word, Humpty Dumpty said in a rather scornful tone, it means just what I choose it to mean, - neither more nor less. Lewis Carroll

23. Patient Focus and Public Involvement (2001) The change required to involve the people of Scotland in their NHS will not happen overnight