EPSO Conference, Brussels 18 – 19 April 2013

User Participation by Regulators

Theresa Nixon Director Mental Health & Learning

Disability and Social Work, RQIA

Background

• Presentation at Utrecht Meeting – October ‘12

• Disseminated learning to other nations not involved in completing previous questionnaire

• Revised questionnaire developed and interviews conducted by Jooske Vos

• Findings to be presented at Brussels Conference

• No definition was given of user participation as it was thought that the term was self explanatory

• “User Participation” was defined as the actual involvement of people who directly use the health and social care services themselves or their family/carers

Clarification of Terminology

Aims of Second Questionnaire

•Review existing practices / highlight best practice

•Lessons learned from each nations experience

•Identify difficulties in implementing processes and ways of overcoming them

continued

•Examine if it is helpful to obtain the opinion of service users

•Seek information on documents used and legislative basis

•Identify type of questions asked in advance when organising user participation

Nine Responses Received

1) Belgium/Flanders2) England3) Finland4) Northern Ireland5) Sweden6) The Netherlands(Health Care)7) The Netherlands (Youth Service)8) Wales9) Portugal

Tradition of User Engagement

User Participation 2012/13

No History of User Participation

Finland

Portugal

The NetherlandsYouth Health

• Self-evaluation by institution in advance of inspection

• Use of notices, letters, posters advising service users of the proposed inspection and inviting comments

• Use of local health and social care committees, community and disability

groups

Similarities of Existing Practices

continued

•Use of advocates or patient representatives for those service users unable to respond

•Questionnaires, both structured and semi-structured, issued to service users and carers

•Website to publicise results of inspection and to invite comments

Difficulties/Constraints

•Lack of policy /legislative basis

•No objective evidence of benefits

•Difficulties in persuading authorities of value

continued

•Difficulties in communicating with service users

•Lack of training in communication skills

•Selection of adequate range of users

Results of Service User Involvement

•Worthwhile but difficulties in measuring or recording

•Roll out of plan following trials

•Assist in improving standards of care

Best Practice

• Institution should not select service user

• Involvement while still in institution

• One-to-one interviews are less intimidating

• Public reporting of inspection results

continued

• Easy to read formats for special groups

• Conduct interviews during routine activity

• Consider use of lay reviewers

• Use of stamped addressed envelopes to encourage responses?

Challenges for Regulators

• Research on how best to access service user views

• Not relying on complaints to identify service users for interview

• Remuneration for lay inspectors

• Identification of suitable training plan

continued

•Use feedback into setting standards

•Appropriate mix/balance of service users

•Protecting the confidentiality of users

Recommendations

• More objective measures of benefits

• Share results with other organisations not directly engaging with service users

• Use feedback to influence legislation, policy and practice at all levels

• Build on existing good practice

Any Questions?