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Preamble

We want to find out about your experience of being a service user representative. We would like to talk about how being a service user representative might affect you as a service user . As a small thank you we will give you a £20 voucher.

Reasons why we are doing this study

(i) improve guidelines for other Disabled people taking on service user representative roles and

(ii) give guidance to professionals about how they can ensure respectful inclusion of service users

Confidentiality

All information gathered in this interview will be confidential and will be used anonymously to inform the project report, guidance leaflets and any articles about what we find. Findings may also be used in conference presentations where relevant and to inform other work from Shaping Our lives. We will not use the name of

professionals or services mentioned in interviews. If you would like to see a draft report please give us your email address so that we can send it to you for comments.

Monitoring Information (optional)

(It may be best to ask these questions at the end when the interviewee is more relaxed. Answering these questions is optional but if the interviewee does not want to answer please can interviewers give any indications so we can assess the scope of participants for reflection in the report and findings.)

Name of interviewer Name of interviewee Email address

If interviewee wishes to declare …

Description of disability (inc. mental health and ltc) Gender

Age

Ethnic origin

Religion and beliefs Sexual orientation

November 2017

Page 39 of 41

Question 1

We are interested in the ways you have taken part as a service user representative for health or care services

1a. Please tell us what service user representatitive activities you are involved in or have done before

1b. How did you get involved in these?

(perhaps: Why do you think you were asked to take part? Why did you agree to do it?)

1c. When did they take place (what years)? How much experience of being a service user representative have you had ?

Question 2

We are interested in how you felt when taking part as a service user representative

2a. How did you feel when you were taking part? 2b. In what ways was it a good experience? (How did this make you feel?)

2c. In what ways was it not so good? (How did this make you feel?)

2d. What things would you change to make these experiences different? (Prompts: timing, venue, communication, feedback, outcome)

Question 3

We are interested in how being a service user representative might make a difference to your personal experience of services

3a. Do you think professionals consider you to be an expert in your service needs when you are using services? (For example, when you go to the doctor or a hospital appointment do they see you as an ‘expert’ if they know you are a service user representative?).

3b. If yes, can you tell us why you feel this way? What difference does it make to the services you get?

November 2017

Page 40 of 41 3d. What would you change if you think these experiences should be different?

Question 4

We want to learn more about any difficulties or conflict you may have experienced between being a user of services and being a representative advising on how services could be improved

4a. Do you feel that professionals treat you differently when you are seeking support compared to when they see you in your service user representative role?

4b. Is this good or bad and why? Can you say a bit about this?

4c. Are there any disadvantages to being a service user representative? Does the role cause you any difficulties? Can you say a bit about this?

4d. Would you like anything about the way you are treated in either role to change and, if so, how?

4e. Is there any advice you want to share with professionals so there is not a conflict between how they treat you when you are using services and how they treat you when you are taking part as a service user representative?

Question 5

We want to learn more about any benefits or opportunities that may come through your experience of being a service user representative

5a. Do you notice any benefits coming your way in the services you receive because you are a service user representative? Can you tell me about these?

5b. Have any new opportunities come your way because you are a service user representative? Can you say a bit about these?

5c. Do you think there should be benefits offered to people who become service user representatives? What sorts of things?

5d. Are there any suggestions you want to share with professionals about how they can better support service users when they are taking part as a service user

representative?

Question 6

6a. What 3 or 4 words would you use to describe your experiences of taking part as a service user representative?

November 2017

Page 41 of 41 6b. What 3 or 4 words would you use to describe your experiences of being a

service user?

Question 7

Is there anything else you would like to share with professionals about the way they interact with you as either a service user in contrast to as a service user

representative? Any tips for professionals?

Question 8

We would like to ask you a hypothetical question … if you were going to advise a friend on becoming a service user representative what would you want to tell them ? What tips would you give them? Why?