PEOPLE WITH EXPERIENCE OF MENTAL ILLNESS

Perceptions of "Like Minds" Project

RESEARCH REPORT FOR

March 2003

Authors: Shaun Akroyd BSocPol Allan Wyllie PhD

Ref: R3250F v5.doc

C ONTENTS

SUMMARY AND DISCUSSION...........................................................................................1 Discussion .....................................................................................................................5 INTRODUCTION ................................................................................................................7 RESEARCH METHODS .....................................................................................................8 CONSUMER SELF-COMPLETION SURVEY FINDINGS .................................................... 12 Good mix of people in sample ....................................................................................... 12 Positive response to advertising ................................................................................... 18 Varying levels of knowledge of other parts of the Like Minds project .............................. 23 Wide range of organisations seen to be involved in project ............................................ 26 Call for greater involvement of people with experience of mental illness ........................ 28 Reductions in level of stigma and discrimination over the last three years...................... 30 A number wanting more information .............................................................................. 32 Strong overall support .................................................................................................. 32 No strong call for change in future Directions ................................................................ 34 Other comments ........................................................................................................... 35 KEY INFORMANT FINDINGS ........................................................................................... 36

APPENDIX 1 - K EY I NFORMANT I NTERVIEW SCHEDULE ............................................................ 53 APPENDIX 2 - N ATIONAL C ONSUMER S URVEY ........................................................................ 56 APPENDIX 3 - S URVEY V ERBATIM C OMMENTS ........................................................................ 64
Comment:

SUMMARY AND DISCUSSION

I NTRODUCTION The research sought feedback on the Like Minds project from people with
experience of mental illness.

The two components of the project were:

In-depth interviews with 20 key informants Questionnaires self-completed by 266 participants, of whom 41% had been involved in organising or presenting as part of the project, 28% had other involvement and 32% had no involvement. There were an additional 42 Pacific peoples who contributed via focus groups

I MPACTS
ILLNESS

IDENTIFIED

BY

PEOPLE

WITH

EXPERIENCE

OF

MENTAL

Ads seen to be having impact

Over 80% of survey participants felt the ads were helping to reduce stigma
and discrimination associated with mental illness.

The main impact was seen to be increased awareness and understanding Key informants generally agreed that the advertising had contributed
significantly to increased awareness of mental illness by whanau, family, and community

Compared to the high proportion of national survey participants who felt

there was a high level of reduced stigma and discrimination as a result of the ads, a much lower proportion of key informants felt the same way or were less certain about the level of reduced stigma and discrimination
Other parts of project also seen to be having impact

Most survey participants thought the other parts of the project were having
some impact, although the levels were lower than for the TV ads.

Key informants mentioned a range of impacts, including the greater

participation of people with experience of mental illness
Many report reduced stigma and discrimination

Considerable numbers of survey participants reported having noticed or

experienced reduced stigma and discrimination associated with mental illness over the last three years in a range of organisations and groups (see graph below).

 Over half of survey participants reported levels of reduced stigma and

discrimination for family/whanau, mental health services, and the public respectively. A little less than half reported a reduction for WINZ, while around one third mentioned a reduction within the Police, Housing New Zealand and the media respectively.

Media reporting and Housing New Zealand had the highest level for
increased stigma and discrimination, but were not much greater than for several of the other organisations/groups.

Changes in level of stigma and discrimination

Mental Health Services WINZ

23 25 20 16 29 20 15

30 19 13 19 26 33 20

5 3 4 3 2 5 3 4

7 9 11 10

Housing New Zealand Police

Family/Whanau

Public Media Reporting

8 12

Little less stigma Little more stigma

Lot less stigma Lot more stigma

Key informants were less sure of change. They noted that it was still too
early in the project to expect widespread change in public attitude and behaviour leading to a reduction in stigma and discrimination.

Key informants were almost unanimous that stigma and discrimination

through mental health service delivery had either not improved or had improved very little as a result of the project.

Most key informants said that in general, government departments had

shown at least some positive change in the way they interacted with consumers, although some still felt that there had either been no or very little change.

W HAT

HAS WORKED WELL AND NOT SO WELL

Strong overall support

There was strong overall support for the project from survey participants
and key informants.
Campaign Ads appealing

Nearly all survey participants and all the key informants had seen or heard
the Like Minds advertising.

Over 80 percent of survey participants noted that the ads were appealing. Key informants generally felt that the national campaign ads had served
the original purpose of increasing awareness of mental illness
Involvement in project generally a positive experience

Over three quarters of survey participants felt their involvement in the

project had been a positive experience

Being involved in the activities was generally not seen as being too
stressful
National level involvement of people with experience of mental illness seen as positive feature

Most key informants saw the National Advisory Group (NAG) as a very
positive feature of the project, lifting the profile of consumer involvement in the project.

Some informants however felt that the NAG needed to be more politicised
and more visible in regions to be more effective
Group support provided by project valued

Survey participants who organised or presented as part of the project felt that support from others in the project had worked well
Limited knowledge among those not involved in the project

Among those not involved in the project, most felt they only knew "a little"
about the project (apart from the advertising)

Only 20% knew of any organisation associated with the project

Personal vehicles contact and newsletters both important communication

Over half of survey participants had found out or heard about the project
from mental health services, which could include personal contact and other forms of communication. Just under half had heard from people working on the Like Minds project and nearly one third mentioned "other people".

 Over a third of participants had heard by way of the Like Minds newsletter,
and a quarter mentioned hearing from regional newsletters.

Key informants had heard about the project from someone working on the
project or were themselves working on the project. They also had access to project newsletters, e-mail bulletins and other forms of communication.

FUTURE STRATEGIES FOR THE PROJECT

Greater involvement of people with experience of mental illness

Survey participants, mentioned that "all" or "most" of the people working

on the project should have experience of mental illness. This desired level was significantly higher than the proportion of consumers they thought were actually working on the project.

A number of key informants said that there needed to be increased capacity in terms of people and resources within the project and that the project should eventually be consumer driven and lead.

Call for using everyday people in the ads

Key informants felt that any new ads needed to portray "grassroots
consumers" and "more everyday normal" situations for people with experience of mental illness.

Key informants felt that any new ads needed to portray people with mental health issues that often required greater levels of treatment intervention (e.g. hospitalisation), and with much higher levels of social discrimination- e.g. those with diagnoses of schizophrenia and bi-polar disorder.

Survey participants also saw this as the main change needed in the ads
Prioritised targeting

The overwhelming response from key informants was for the project to
continue targeting the existing persons, groups or organisations, noting that targeting should firstly start with the mental health services, then government organisations and agencies (including the Police and the Department of Justice), followed by media and media personalities, and finally the general community (including people with experience of mental illness, counsellors, social workers, religious leaders, and schools). Key informants noted that more educative workshops were needed to target government departments.

Survey participants also wanted more of the same and did not identify any
clear emphasis for improvements to project activities

More information wanted

Survey participants showed interest in the project by wanting to be sent

regular information about the project (44%), which was in addition to 21% who were already receiving information.
Other initiatives/changes suggested

Some key informants wanted providers who were not meeting service
specifications to be replaced with new providers.

Maori key informants were especially keen about using a Road-show and
music, and Maori television programmes to promote the project to Maori.

For greater project impacts, Pacific key informants suggested: prioritising

initiatives; encouraging bi-lingual programmes; maintaining a holistic approach that included the physical, mental and spiritual aspects of the recovery process; and encouraging more interaction between mainstream, Maori and Pacific programmes. Other suggestions were having ethnic based community/church based education classes alongside support and recovery strategies amongst families, and engaging communities and community leaders to develop their own strategies.

D ISCUSSION
The high proportion of people with experience of mental illness reporting
that they had noticed or experienced reductions in stigma and discrimination from the range of different organisations and groups is the strongest evidence to date that this project is achieving its goals. These are the people the project aims to impact on and they are telling us that they are seeing the impacts the project is seeking to achieve. Obviously other factors may have influenced these perceived changes, but it would seem likely that the project has been a major contributor

The fact that those who had no involvement with the project were as likely
as the others to report reduced stigma and discrimination shows that the perceptions of the impacts were not just limited to those who had been closely involved in the project

The survey results showing decreased stigma and discrimination from

mental health services were inconsistent with the perceptions of most of the key informants, which does point to the importance of seeking periodic feedback from the wider consumer body

The rates of stigma and discrimination reported for the government

departments gives some credibility to the findings, in that WINZ had the highest mentions for reductions and this was the department that had been most receptive to the project and with which the most workshops had been undertaken

This report shows that people with experience of mental illness are
5

generally very satisfied with the project, although they would like to see more consumer involvement in the project

The study also points to the importance of newsletters as vehicles of

communication, so perhaps getting more people on the mailing lists should be a priority.

INTRODUCTION
This study is part of a programme of research being undertaken by PHOENIX Research to evaluate the national Like Minds project which is focused on reducing stigma and discrimination associated with mental illness. This study provides the most extensive understanding to date of the responses of people with experience of mental illness to the project. The objectives were:

To assist in identifying what people with experience of mental illness

perceive to have been the impacts of the campaign and project

To identify what people with experience of mental illness feel has worked
well and not so well and the lessons that have been learned

To get input from people with experience of mental illness to assist with
determining future strategies for the project

RESEARCH METHODS
There were two main components to this research. Firstly twenty interviews were undertaken with key informants with experience of mental illness who had a lot of involvement and/or a high profile with the project. This is reported in a separate chapter, but these interviews also assisted in developing the questionnaire for the second component, which was a selfcompletion survey of a wider group of people with experience of mental illness. Some people who did not want to do the self-completion survey took part in group discussions. The self-completion questionnaire was pre-tested.

S AMPLE S ELECTION
Selection of Key Informants

A list of potential key informants was compiled by the National Advisory Group to the project (NAG), in partnership with the National Like Minds Project Manager and 20 were selected. The criterion for selection was based on them having had close involvement in the project. Each region (17 in total) was represented by at least one key informant. All were contacted by phone, e-mail, fax, or post to inform them about the study and issues of confidentiality, and to gain consent for their participation in the study.
Selection of pre-test participants

People with experience of mental illness were drawn from a small number of mental health communities within the Auckland area. Participants were mostly Pacific and Pakeha/NZ European, and one person was Maori. A total of 7 participants were asked to answer all interview questions in sequence and to provide feedback about any concerns or issues with the interview schedule. Participants were not expected to have had an in-depth knowledge of the Like Minds project.
Selection of consumer survey participants

The aim was to generate a total sample of about 300 participants, with the approximate proportions in each region being based on the census data for all people living in those regions. Participants were also stratified by ethnicity within each region (Maori, Pacific, Pakeha/NZ European/Other). The combined number of participants who were involved in this study, either by individually filling out self-completion forms (266) or through involvement in a focus group (42), was 308 participants. The 42 focus group participants were Pacific participants from the Auckland area. The ethnic composition of survey participants was as follows: Maori (35%), Pacific (21%, which includes the focus group participants), Pakeha/NZ European (51%), Other (3%).

(Participants could indicate belonging to more than one ethnic group, which is why the percentages add to more than 100.) A key regional contact person (sometimes 2 people) from the respective regions was involved in managing and facilitating the completion of surveys, drawing on established networks of people with experience of mental illness, within their region. These facilitators were asked to bear in mind that ideally half the participants should have had little or no involvement with the project and that where possible to have some Maori representation. In regions with larger Maori populations, Maori were involved in organising some of the groups; likewise for Pacific peoples in Auckland and Hutt/Porirua. Each regional facilitator was given specific numbers of surveys to have completed by a due date. The table below shows the target numbers of interviews and those achieved. It was always acknowledged that the targets were approximations, as it was difficult for the person organising the data collection in their region to know how many people of which ethnicity were going to turn up. It should be noted that the data for actual numbers of interviews includes some people in more than one ethnic category. Overall Maori exceeded targets and Pakeha were under-represented. The two groups that were most under the target were Pakeha in Canterbury and Pacific peoples in Wellington. This was despite allowing these two groups additional time for data collection.

Region Northland Auckland Waikato/ Coromandel/ King Country Bay of Plenty Tairawhiti Hawkes Bay Taranaki Manawatu/ Wanganui Wellington/ Wairarapa West Coast Canterbury Nelson/ Marlborough/ Tasman Otago Southland Total

Number Allocated

Number Achieved

Number of Maori Allocated

Number of Maori Achieved

Number of Pakeha NZ Allocated

Number of Pakeha NZ Achieved

Number of Pacific Allocated

Number of Pacific Achieved

Other Allocated

Other Achieved

12 94

5 103

6 18

3 23

5 41

1 32

1 35

0 52

0 1

28 19 5 12 9 18 34 4 39

31 19 4 15 9 18 38 4 26

10 9 3 5 2 6 7 1 5

20 15 2 4 1 5 16 2 8

16 9 1 6 6 11 20 2 32

11 8 3 12 9 12 21 3 13

2 1 1 1 1 1 7 1 2

3 2 0 0 0 1 2 0 4

1 0 0 0 0 1 3 1 2

11 16 8 309

11 17 8 308

2 2 1 77

4 3 2 108

7 13 6 175

8 15 8 156

2 1 1 57

0 0 0 64

0 1 0 10

M ETHOD

OF

D ATA C OLLECTION

Key Informants

Interviews were mostly an hour in duration and the majority of interviews were audio recorded (some key informants preferred not to be recorded). Interviewers also made hand written notes of the interviews. A structured interview guide was used in the interviews. Most interviews were by phone and were undertaken between September 2 and 18, 2002. Although ethnic and consumer interviewers were available to key informants to choose from, key informants could in effect choose to be interviewed by any of the four interviewers. These interviewers included: Nancy Sheehan (Pacific interviewer), Chris Hansen (Pakeha/NZ Euro/consumer), Shaun Akroyd or Ian Heperi (Maori interviewers).
Pre-test

All interviews were undertaken face-to-face either at Phoenix Research, Auckland, or at venues specified by participants. The pre-test process usually lasted between 30 and 60 minutes. Incremental changes were made to the interview schedule after each interview. This iterative process continued until no further changes were needed. Pre-testing occurred in late October 2002.
Consumer survey

People with experience of mental illness were invited via key regional contact persons, to complete a self-completion survey. Focus groups (using an interview schedule) were used where language, or lack of comprehension of the questions, was a barrier to participation. Participants for this phase were not required to have been involved with the project in any depth. Most questions in the survey required participants to tick the box, and some questions required people to write in their comments. The survey was designed to only take about 10 to 15 minutes to complete, depending on how much people wanted to write. Wherever possible, the self-completion surveys were completed by individuals meeting as a group, making it easier for the facilitator to explain the survey, and if needed, making it easier for participants to ask others if they were unsure how to do it. Upon completion, the surveys were placed in sealed envelopes or boxes supplied by Phoenix Research, and returned to Phoenix via courier or free-post envelopes. The majority of Pacific participants in Auckland, who were involved in the project through one of the providers, preferred the use of the focus group to discuss the project. A total of 42 Pacific people answered the questions in this manner.

10

A NALYSIS

AND REPORTING

Each interviewer provided a level of analysis and summary (including typed and hand written notes) of their key informant interviews, which were forwarded to Shaun Akroyd for inclusion in the overall analysis for these interviews. Shaun Akroyd provided the majority of the analysis and reporting of the key informant interviews. All analysis and reporting was checked for accuracy and commented on by the other interviewers. Shaun Akroyd provided the majority of the analysis and reporting of the National Consumer survey. Input into the analysis, summary and recommendations was provided by Dr Allan Wyllie, Phoenix Research. Where differences were statistically significant (at the 95% confidence level) this has been noted in the text. However, we have also commented on some other differences that were not significant, particularly to give some indications of how Maori, Pacific peoples and Pakeha responses compared. There was only one Maori response that was significantly different from the total sample, but there were more for Pacific peoples. However, as the Pacific survey sample was only 22 people the findings should still be interpreted with some caution.

11

CONSUMER SELF-COMPLETION SURVEY FINDINGS G OOD

MIX OF PEOPLE IN SAMPLE

The sample was intended to include a good mix of people who were organisers or had presented as part of the project, those who had some other type of involvement such as attending a workshop or exhibiting in the art exhibition and those who had no involvement. This latter group were considered particularly important to include as their voice had not been heard in the project prior to this. They accounted for 42 percent of the sample, the organisers/presenters 32 percent and those with other involvement 26 percent. Pacific people who completed the survey were significantly more likely to be involved as an organiser/presenter (59%), with 18% having other involvement and 23% no involvement. The information from the focus groups therefore provides a better indication of the opinions of Pacific peoples who were less involved in the project. People living in the Midland region were also significantly more likely to be involved as an organiser/presenter (46%). Forty-one percent of Maori participants were organisers/presenters, 28% had other involvement and 32% no involvement. Among Pakeha, only 24% were organisers/presenters, 27% had other involvement and 49% had no involvement.

S ATISFACTION

WITH INVOLVEMENT

The table below compares the responses in the types of activities involved in, between those which were undertaken by people as an organiser/presenter, and those who indicated having 'other' involvement. The organisers/presenters could also have been involved in 'other' activities for which they were not organisers or presenters, in which case they were included in the second column of data.

12

As an Organiser/ Presenter (N=85) Activities Mental Health Awareness Week Presentation/seminar/talks/conference/radio talk Hikoi/Walk/March Local and national Like Minds Like Mine group/chair/pilot workshop/committee Hearing Voices workshop Art exhibition Workshop unspecified Sports day Community Voices workshop Respect Awards ceremony/awards/peace awards Meetings unspecified Talent quest/Larf festival/karaoke contest Training workshop: Facilitators None/nothing else World Mental Health Day Advocacy workshop SFNM facilitation team/consumer presenter/facilitator Schizophrenia Fellowship Consumer advisor to Pacific Health Marae based workshops C.A.G. Survey by Phoenix House/survey Recovery project Anxiety disorder groups D.A.G. Public speaking training Documentaries on mental health and art Leadership training consumer, leaders Pacificare Trust School education programmes M.A.G. Maori Consumer Advocate International Mental Health Conference (Ani Gosling) Pacific Trust Don't know 1 1 1 1 1 1 1 1 % 32 27 17 11 9 9 5 5 4 4 2 2 2 1 1 1 1

Other Activities (N=154) % 10 5 12 3 5 3 2 1 0 7 3 3 0 7 1 0 0 1 1 1 1 1 0 0 0 1 1 0 1 0 0 1 0 3

13

Participants who live in the Auckland region were significantly more likely to have taken part in a hikoi/walk/march (53%). Maori were also more likely to be involved in the hikoi. All three ethnic groups were similar in their involvement in Mental Health Awareness Week. None of the Pacific peoples had participated in Hearing Voices workshops. Pakeha tended to have been more involved in the Respect Awards than either Maori or Pacific peoples.

G ROUP

SUPPORT PROVIDED BY PROJECT VALUED

Participants were asked to think about all the project activities that they knew of (not necessarily involved in) and to suggest what they thought had worked well. As can be seen from the table below, the support from others was mentioned more than the TV ad, although it may be that some people thought this section was not including the TV ads. Although there were no significant differences between the things mentioned by the organisers/presenters and the others who had involvement, there was a general pattern of organisers/presenters tending to have higher levels of mentions. The group support was mentioned by all ethnic groups. Maori were more likely to mention Hearing Voices workshops, and consumers being involved. Pacific peoples were more likely to mention public awareness and less likely to mention the TV ads. Pakeha tended make more mention of the art exhibitions and Respect Awards. Consistent with the previously noted higher mention of the hikoi as an activity by participants living in the Auckland region, these people were also more likely to mention that the walk for wellness/hikoi had worked well (24%). When comparing responses to previously on activities involved activities that had relatively high with the frequency of involvement this question with the question reported in, it can be seen that there were some mentions for working well when compared in them. These were:

Hearing Voices workshops Respect Awards (to a lesser extent) Art exhibitions
Those activities with relatively low mentions for working well when compared with the frequency of involvement in them were:

Mental Health Awareness Week Speaking to outside groups Community Voices workshops/ Workshops Sports day

14

Project Activities That Have Worked Well

Participants Involved with project (N=153) %

Organiser/ presenter (N=84) %

Other involvement (N=69) %

Group support/support of others TV ads Hearing Voices Workshop Walk for Wellness/Hikoi Respect Awards Consumers being involved Art Exhibition/Arts Concerts/Karaoke Mental Health Awareness Week Public participation Public awareness Speaking to outside groups

15 13 9 7 7 5 5 5 5 4 3 3

19 18 11 8 6 10 6 6 7 5 2 5

10 7 6 6 7 0 3 3 1 3 4 1

P EOPLE

FEEL POSITIVE ABOUT THEIR INVOLVEMENT

Over three-quarters of participants felt that involvement in their activities had been either "very positive" or "positive". Levels were fairly similar across all three main ethnic groups.

15

How feel about activities involved in

%

52

26

9 1
Very positive Positive Neither positive/negative Negative

0
Very negative

1
Don't know

A CTIVITIES

GENERALLY NOT TOO STRESSFUL

Three quarters of participants felt that their involvement in project activities had been either "not stressful" or "a little stressful". A small group mentioned that it had been "very stressful" (7%). Once again, levels were similar across ethnic groups.

Stress being involved

%

40 35

9 2

Very stressful

Quite stressful A little stressful

N ot stressful

D on't know

16

NO

CLEAR

EMPHASIS

ON

IMPROVEMENTS

SOUGHT

TO

PROJECT

ACTIVITIES

Participants were asked to suggest any improvements to the project activities. The main suggestions for improvement were:

Improvements to Project Activities

Participants with involvement in project (N=153) %

More involvement with people with mental illness More resources to educate community/ more funding/ more finance More activities/ activities on a more regular basis Better financial benefits/ cash inducements for work Involve media more - with innovative ways of getting message across/ more positive reporting Emphasise institutional stigma, discrimination/ raise awareness of this Go wider/Reach more groups within community teens, organisations More advertising/Promotions Project to educate community that we are normal people Workshops to continue

6 6 5 4 3 3 3 3 3 2

17

P OSITIVE
M OST

RESPONSE TO ADVERTISING

ARE AWARE OF ADVERTISING

Nearly all participants (95%) had seen or heard the Like Minds advertising either on TV or radio. There were only 3% who had not seen the ads; the other 2% were either unsure or did not answer the question.

A DVERTISING

HAS HIGH APPEAL

Seventy percent of participants liked the ads "a lot", while eighty-four percent liked the ads "a lot" or "a little". Although liking of the ads showed signs of being less among those with no involvement in the project (61%), this difference was not statistically significant. Appeal was high across all three ethnic groups.

How much like ads

%

Like a lot

70
Like a little N eutral/N either like/dislike D islike a little D islike a lot

14 9 2 2

M OST

FEEL ADS HAVING SOME IMPACT

Exactly half mentioned that the ads were helping "a lot" to reduce stigma and discrimination associated with mental illness. The total mentioning that the ads were either helping "a lot" or helping "a little" was 85%.

18

Ads helping a lot

%

H elping a lot H elping a little N ot helping

50 35

D on't know

One survey participant acknowledged the ads for: "Putting the issue of mental health/illness in front of the public. Developing awareness of discrimination. Challenging prejudice and ignorance about the reality of having a mental health condition." (304)

A key informant noted the following about how the ads were helping: "General awareness about the existence of mental illness [but] almost no impact with the most severely discriminated againstIt's been useful for supporting mild to moderate illness" (KI 01)

As shown in the graph below, the proportion rating the ads as helping "a lot" tended to decrease along with involvement in the project, as might be expected. However the level was still 44% among non-participants and this increased to 83% when the helping "a little" figures were added.

19

Ads helping a lot or a little

%
100

80

60
60

Helping a lot

53

44

40

Helping a little

20

29
0 Organiser/presenter

31

39

Other involvement

No involvement

The Pacific peoples who completed the survey were significantly more likely to say the ads were helping "a lot", however those who took part in the focus groups felt less positive about the impact and were lower than total sample. Fifty-six percent of Maori felt the ads were helping "a lot"; the figure for Pakeha was 45 percent.

I NCREASED

AWARENESS / UNDERSTANDING KEY AD IMPACT MENTIONED

When asked about the ways that the ads were helping to reduce stigma and discrimination, "promotes awareness/understanding" was mentioned by almost twice as many people as anything else. However, there were a number of more specific responses, mostly relating to the messages communicated in the ads. The responses were as follows:

Promotes awareness/ understanding (29%) Shows it can happen to anyone (15%) People with mental illness can do anything/ can still achieve/ living
productive normal lives/ can still be successful (12%)

Brings it out in the open/ making it ok to talk about mental illness/ can
speak freely (12%)

Can happen to high achievers (12%)

20

 Encourages tolerance/ reduces stigma and discrimination/ helping people

to not judge (12%)

Normalises mental illness/ stops a lot of fear/ shows people that it's
alright/ other people see that we are normal even though we have a mental illness (11%)

Shows support from family/ friends/ peers (4%) Highlights discrimination/ brings discrimination to the fore/ makes people
aware of the stigma that exists (3%)

Help a lot/ ads are excellent (3%) Is positive/ in a positive framework (3%) Media exposure/ using TV helps (2%) Shows people with mental illness do get better (2%) Shows mental illness is not always obvious (2%) Helping a little (2%)
Pacific peoples were significantly more likely to mention that "it can happen to high achievers". Males were significantly lower (4%) than total sample (11%) for mentioning "normalises mental illness/stops a lot of fear". Participants living in the Midland region (12%) were significantly more likely than total sample (3%) to mention "helping a lot". One survey participant said: "The project has given some view point that most people would be able to understand, that more communication is needed to see the value of human life without the stigma of mental health, which has been put there by people who do not understand it in the first place, therefore effective ads are a good start to helping the community." (192) Another suggested: "Mainstream population being quite ignorant about the subject. This opens eyes to the fact 'it' can hit anyone." (311) A key informant noted: "putting it on peoples' agendasjust saying well, this is not an acceptable way to treat people and just making them aware that they're more conscious of what they do and how it impacts and how devastating those impacts can be for people with experience of mental illness" (KI 06)

21

C ALL

FOR USING EVERY DAY PEOPLE IN ADS

Participants were asked for any comments about the ads or any changes they would suggest if further ads were made. The biggest response was "use everyday people/use a variety of people/use local people" (18%). The rest of the responses attracted 9 percent or less. Responses included:

Use everyday people/ use a variety of people/ use local people (18%) Need to cover more serious mental illnesses/ads should get tougher (9%) More information needed/more facts about mental illness (7%) More ads/ongoing advertising (6%) Involve young people/ aimed at educating the young (4%) Less glamour/more realistic (4%) Show how families/ friends/ whanau cope/showed support (4%) More life story experiences/good times and bad times (3%) More famous people/ overseas celebrities/ other famous people (3%) More ethnic diversity/more Pacific/ Asian/ Maori faces (3%)
There were a number of other responses but these were at 2 percent levels or lower. Participants living in the Christchurch/Dunedin region were significantly more likely (40%) than total sample (19%) to mention "use everyday people". Responses to this question included: "The ads are great but need more faces and races of people with mental illness." (064) "It was good that important people 'came out in the open' but the average Joe Blow needs to be portrayed in the ads." (004) "Get everyday people not just the big ones. I have a mental illness and work just like them." (001)

22

V ARYING LEVELS OF KNOWLEDGE L IKE M INDS PROJECT

OF OTHER PARTS OF THE

Participants were asked how much they felt they knew about what was happening in the Like Minds project (apart from the advertising) to reduce stigma and discrimination associated with mental illness. Nearly half of participants said they knew a little, and those who mentioned knowing "a lot" or "quite a lot" were similar in proportion to each other. The responses were:

Know a lot (20%) Know quite a lot (21%) Know a little (47%) Know nothing (5%) Don't know (6%)

As would be expected, knowledge increased with increasing involvement in the project. Sixty-eight percent of those involved as an organiser/presenter said they knew "a lot" or "quite a lot" (see graph below). The proportions of Maori saying they knew "a lot" about other aspects of the project was 25%, while for Pacific peoples and Pakeha it was 18%.

How much know about project, apart from advertising

%

8 32 26 11
A lot

20 37 61

Qu ite a lot A little N oth in g

44
D on 't kn ow

31 6 4
Organiser/presenter Other involvement

9 11
No involvement

23

O THER

PARTS OF PROJECT SEEN TO BE HAVING IMPACT

Participants were asked how much they thought other parts of the project (apart from advertising) were helping to reduce stigma and discrimination associated with mental illness. The graph below compares these responses with those for the impact of the advertising and it can be seen that more people saw the ads as helping "a lot" than was the case for other parts of the project. However, the majority still saw the other parts helping at least "a little" and quite a number saw them helping "a lot". Not surprisingly, those who were involved in delivery of these other parts were more likely to believe they were helping "a lot". Fifty-five percent of Pacific peoples thought the other parts of the project were helping "a lot", for Maori the level was 40% and for Pakeha, 30%. These differences are likely to be at least in part a product of the greater proportions of organisers/presenters in the Pacific sample and, to a lesser extent, the Maori sample. Participants living in the Auckland region were significantly less likely (20%) than total sample (35%) to mention other parts of the project "helping a lot" (20%), while those living in the Midland region were significantly more likely to do so (50%).

Ads/other parts of project helping a lot and a little

%
100
Ads Ads Other Ads

A lot A little

80

Other

60

60

39

48

53 36

Other

40

24

20

44 29 31 31 23 30

0
Organiser/presenter Other involvement No involvement

24

P ERSONAL

CONTACT

AND

NEWSLETTERS

BOTH

IMPORTANT

COMMUNICATION VEHICLES

Over half of participants indicated having "found out or heard about" the project from mental health services, which could include personal contact and other forms of communication. Just under half had heard from people working on the Like Minds project and 28% also mentioned "other people". Over a third of participants had heard by way of the Like Minds newsletter, a quarter mentioned hearing from regional newsletters. Nine percent mentioned other ways. Participants living in the Auckland region were less likely to have heard about the project from people working on the Like Minds project (32%). Pacific survey participants were more likely to mention hearing through mental health services, while the Pacific focus groups tended to be low in mention of the Like Minds project workers being informants about the project. Those involved as an organiser/presenter were significantly more likely to mention hearing about the project from:

"Like minds" newsletter" (55%) Newsletters produced by regional organisations working on the project
(46%)

People working on the "like minds" project (74%) Other ways (18%)

Those with no involvement in the project were significantly less likely to mention hearing about the project from: newsletters produced by regional organisations working on the project (12%) and people working on the "Like Minds" project (27%). However, it should be noted that there were still 52% of this group who said they had heard about the project from mental health services, 32% from the national Like Minds newsletter and 21% from other people. It is useful to look beyond the organiser/presenter group and from the others compare those who chose to get involved and those who did not. As can be seen in the differences between the last two columns in the table below, those who did not get involved were less likely to mention being informed by people working on the Like Minds project, by other people and by regional newsletters. This suggests they are not part of the networks that the project is currently reaching within their region.

25

Involvement with Project Organiser/ Presenter Other Involveme nt

(N=69) %

Total Which Ways Heard About Project

(N=266) %

No Involveme nt
(N=112) %

(N=85) %

National Like Minds Newsletter Newsletter by Regional Organisations People Working On Like Minds Mental Health Services From Other People In Other Ways

40 26 49 56 29 9

55 46 74 65 34 18

32 25 52 54 33 7

32 12 27 52 21 5

L IMITED

AWARENESS

OF

ORGANISATIONS

INVOLVED

IN

PROJECT

A total of 79 organisations were identified by participants across the regions, as organisations that they had worked with on the project, or that they knew worked on the project in their region. However, 49% of the sample were not able to name any organisations. Among those with no involvement in the project, 80% were unable to name any. The level among organisers/presenters was 14% and among those with other forms of involvement it was 39%. Nine percent of those involved in the project specifically mentioned Like Minds Like Mine as an organisation, this varying by region with 2% Auckland, 7% in the Midland, 9% in Wellington and 18% in Christchurch/Dunedin. Organisers/presenters were more likely to mention Like Minds Like Mine. As would be expected, there was wide variation in recall by region and the levels within each region will have been influenced by the networks that were used to generate the sample for this survey, therefore the data in the following table showing the mention of the Like Minds providers needs to be interpreted with some caution.

26

Regional Like Minds Providers Auckland region Te Hauora o te Tai Tokerau/ THOTT Mental Health Foundation Hapai te Hauora Tapui Pacificare Framework Trust Midland region Taranaki Mental Health Association/ Like Minds Taranaki New Progress Enterprises Raukura Hauora o Tainui Serious Fun 'N Mind Trust Poutiri Trust Turanga Health Wellington region

Participant mention %

no mention 3 20 9* 12

no mention 22 no mention 10 no mention no mention

The Lighthouse-Napier District Health Board - PHU-Good Health Wanganui - PHU-Hutt Valley Health - PHU-MidCentral Health Pacific Community Health Taiwhenua o Heretaunga Te Whakapiki te Mohiotanga Te Roopu Pokai Taniwhaniwha Te Rapuora o te Waiharakeke South Island Te Rapuora o te Waiharakeke PHU-Nelson/Marlborough Health Mental Health Foundation Te Awa O Te Ora Hibiscus Health/ Pacific Trust *

4 5 no mention no mention no mention 3 1 1 8 3

17 2 15 11 7

This may have been higher if more Pacific peoples had completed survey forms rather than been part of group discussions

27

One survey participant noted: "There is not a bigger profile amongst mental consumer about people who run these projects. I don't know them off the top of my head. I'm sure I've heard of them I just don't know what they do." (189)

Other (non-Like Minds) organisations with participant mention above 3% are listed below. There were none for the South Island.
Auckland region

Nga Morehu Whai ora (6%) Te Ata (6%)

Midland region

Consumer Advisory Group (CAG) Eastern Bay of Plenty (9%) Te Korowai Hauora/Matauranga (7%) Horizon Whakatane (5%)
Wellington region

Well Link (7%) Schizophrenia Fellowship (5%) Wellington Mental Health Consumers Union (5%) Matahuariki (4%)
Maori participants were significantly more likely to mention Hapai and Pacific participants Pacificare/Pacific Trust.

FOR GREATER INVOLVEMENT EXPERIENCE OF MENTAL ILLNESS

C ALL

OF

PEOPLE

WITH

All participants were asked how many of the people currently working on the Like Minds project had experience of mental illness. This question was followed by another asking how many of the people working on the project should be people with experience of mental illness. The following graph shows a comparison between the two estimations. The combined responses for "all" and "most" for those who "should" be working on the project was significantly higher than those "thought" to be working on the project (63% versus 42% respectively).

28

People with experience of mental illness working on the project

%

Thought to be working Should be working

26 13

37 29

25 20 10 3 2 1

20 8

All

Most

Some

A few

No people Don't know

Responses to this question included: "Consumers/tangata whaiora taking lead role/making decisions about what happens in their communities." (068) "I would like to see that the consumers who have been working with the project are supported and empowered into employment e.g. positions currently held in public health and organisations working with Like Minds, Like Mine become available for consumers." (318)

Those involved as an organiser/presenter were significantly more likely to estimate the number of people with experience of mental illness currently employed on the project, as "some" (38%) Those with no involvement in the project were more likely to answer "don't know" (31%) and less likely to answer "some (15%). Pacific peoples completing the survey were more likely than other groups (27%) to feel that only "a few" of the people currently working on the project had experience of mental illness. However the Pacific peoples in the focus groups did not show this pattern, instead tending towards the "some" option. Participants who lived in the Christchurch/Dunedin region were significantly more likely (52%) than the total sample (37%) to say "most" people working on the project should have experience of mental illness.

29

H IGH

PROPORTIONS DISCRIMINATION

REPORT

REDUCED

STIGMA

AND

One way of identifying whether there had been a decrease in stigma and discrimination was to ask people with experience of mental illness whether they had noticed or experienced any increase or decrease over the last three years within a number of groups, services or government departments. A survey participant noted: "I would like to commend you on all the various efforts that have been made through the Like Minds project in reducing stigma and discrimination and the raising of awareness and not to be ashamed or discouraged and that its a joint effort by all and finally that there is hope out there. Thank you. Kia ora." (199)

The graph below shows participants' responses based on the following scale: "A lot less stigma and discrimination now", "A little less ", "A little more ", "A lot more ". Those reporting less stigma and discrimination are to the left of the vertical line and those reporting more are to the right. The proportions choosing the option of "No change", "Never noticed or experienced stigma or discrimination at [organisation/group]", or "Don't know" are not included in the graph. If participants reported having "had little or no contact with [organisation/group] over last 3 years", they were excluded from the analysis for that organisation/group.

Changes in level of stigma and discrimination

Mental Health Services

23 25 20 16 29 20 15

30 19 13 19 26 33 20

5 3 4 3 2 5 3 4

7 9 11 10

WINZ Housing New Zealand

Police

Family/Whanau

Public Media Reporting

8 12

Little less stigma Little more stigma

Lot less stigma Lot more stigma

30

The highest reported levels of reduced stigma and discrimination were for Family/Whanau, Mental Health Services, and Public (55%, 53%, 53% respectively). The next highest was WINZ (44%), which was higher than the other government departments of the Police (35%) and Housing New Zealand (33%). Media reporting had one of the lowest levels for reduced stigma and discrimination (35%) and the highest for increased (16%). However the level for increased was similar to Housing New Zealand (15%) and not much greater than for several of the other services/organisations, namely Police (13%), WINZ (12%), Mental Health Services (12%), and the public (11%).
Mental Health Services

Participants who lived in the Christchurch/Dunedin region were more likely (45%) than the total sample (30%) to have noticed or experienced a "little less stigma" in Mental Health services, while those who lived in the Midland region were less likely (16%) to give the same response. Participants who lived in the Auckland region were more likely (15%) than total sample (7%) to report a "lot more stigma" in the Mental Health services.
Government Departments

For WINZ, participants who lived in the Midland region were less likely (4%) than the total sample (19%) to have noticed or experienced a "little less stigma" at WINZ, as were those aged under 40 years (10%). For the other government departments, Housing New Zealand and the Police there were no differences across demographics for these departments.
Family and Whanau

Participants who lived in the Auckland region were significantly more likely (12%) than total sample (5%) to have noted or have seen a "lot more stigma" in family and whanau.
The Public

Participants who lived in the Midland region were more likely (33%) than total sample (20%) to have noticed or experienced a "lot less stigma" among the public.
The Media

Participants who lived in the Midland region were also less likely (5%) than total sample (20%) to have noticed or experienced a "little less stigma" in media reporting.
Ethnic differences

There were no significant differences in the responses to this set of questions by Maori, Pacific peoples and Pakeha. There were indications of

31

Pacific peoples being less likely to mention a "lot less" stigma and discrimination, especially in the government departments and the public.
Differences by level of project involvement

Those who had not been involved with the project were as likely as the others to report reduced stigma and discrimination.

NUMBER WANTING MORE INFORMATION

Participants were asked whether they would like to be sent regular information about the project and 44 percent did. Just over one fifth (21%) were already receiving information about the project. Those who had indicated being involved in the project as an organiser/presenter (60%) were more likely to request being sent regular information about the project. Participants who lived in the Midland region were also more likely to request information (64%) and showed a correspondingly low level already receiving information (9%). Pacific peoples taking part in the survey were significantly more likely to have requested information, but this trend was not evident among those in the focus groups.

S TRONG

OVERALL SUPPORT

In an attempt to gauge the extent of support for the project from people with experience of mental illness, participants were asked how much they supported or opposed the project, as it is currently operating. Eighty percent indicated "strongly support" or "support" for the project, while very few were opposed. Among Maori the proportion "strongly" supporting the project was 44%, among Pacific peoples it was 55% and Pakeha it was 43%. Various responses to this question included: "Quite happy with progress. Just putting things into action and going by our national plan." (003) "Well I think that as far as confidence and that is concerned, I can see there's a lot of strength within the whole project, there's a lot of very caring people you know" (KI 03)

32

Overall support of project

%

43 37

7 1 1
Oppose

Strongly support

Support

Neither Don't know support nor oppose

Strongly oppose

The graph below represents the overall level of participant support for the project by level of involvement.

Overall support by level of involvement in project

100

%
80 Strongly support

60

62

42

30

40

Support

20

39 27

43

0 Organiser/presenter Other involvement No involvement

33

NO

STRONG CALL FOR CHANGE IN FUTURE

D IRECTIONS

A number of suggestions were made by participants about what sorts of things, or groups of people they would like to see the project focusing on over the next couple of years, to reduce stigma and discrimination. However, none of the suggested changes exceeded seven percent mentions, as shown in the table below. It is unclear from some of the comments whether they relate to people with experience of mental illness or the wider population. For example, with the "young people" category, it is unclear whether some of the comments mean that more young people with experience of mental illness should be targeted by the project, or whether it means that more young people in the wider population should be targeted.

Things Project Should Focus On More of the same/more advertising Young people/ school age children/ focusing on young people to combat it early Mental Health workforce Consumers Other Mental Illness: Schizophrenia/bipolar etc Involve families All people/we are no different from each other/ wider community Joe Blow everyday person who manages mental illness successfully Mental Health Services/Hospitals Employment for consumers Other ethnicities Communities/Churches The media Police Other Government funding/Policy

Total Sample % 8 7 6 5 5 5 5 4 4 4 4 3 3 3 3 2

Responses in relation to the things the project should focus on included: "Mental Health Services staff all of them." (304)

34

"Continue what they are doing now. New focus on youth needed." (316) "I thinkthere needs to be more media work around the word "schizophrenia" because people don't seem to understand it, or when they see something on TV" (KI 03)

Participants who lived in the Auckland region were significantly less likely (0%) to mention "more of the same". Those involved as an organiser/presenter were significantly more likely (12%) to suggest that the project should focus more on "consumers".

O THER

COMMENTS

At the end of the questionnaire, participants were given the opportunity to make any other comments about the project. As these varied considerably they have been recorded verbatim in Appendix 4.

35

KEY INFORMANT FINDINGS

The following sections are based on key topics that were discussed in the interviews. For each key topic, there is an initial overview of the common points across all key informants interviewed (Maori, Pacific, Other), followed in most instances by specific sections relating to the three sub-groups. These latter sections highlight any differences from the overview.

I MPACT /A WARENESS

OF THE CAMPAIGN

All of those interviewed, noted that the project had increased awareness of
mental illness and had in general promoted discussion within the family, whanau, and community

Awareness had occurred at a number of levels including people with

experience of mental illness, community/public, Ministry of Health, and health professionals

The project had helped to make mental illness more visible by normalising
it and putting it on people's agendas

There was a sense that the project had built on and increased the
momentum of work that had been done in the regions prior to the campaign, to address stigma and discrimination

The campaign was acknowledged for enabling people with experience of

mental illness to take high level roles in the project, to deliver services and to train others in delivery

In general, the campaign had encouraged the involvement of people with

experience of mental illness, whether in public speaking, Hearing Voices workshops or other ways, although the extent of this seemed to depend on the regional providers ability or desire to involve people with experience of mental illness

Some participants noted that evidence of the campaign impacts could be

seen in an increasing move toward recovery based training, and the presence of a politicised group of people with experience of mental illness (NAG and other groups)

Some indicated a reduction in stigma and discrimination while others said

that it was still too early to see any definite changes or did not mention the campaign having any impact at all on reducing stigma and discrimination

Some participants said that provider meetings needed to be better coordinated and that providers should have greater accountability to the funder

36

 One participant noted

"just mainly giving or liberating people who have experience of mental illness. I think that's been good for those who have been uncomfortableto talk about their illness, now it's kind of giving them permission or allowing them to feel a bit more comfortable to talk about it" (KI 06) another added: "I think it's had a far reaching and very effective impact on the community-I think it's been positive and I know from being a consumer and having talked to other consumers that it has gone a long way to making the journey of mental illness quite a bit easier" (KI 10)

Maori perspective

Two of the participants noted that the national Maori provider hui would be
more effective if there was: more provider collaboration between Maori providers; better co-ordination of the hui; a better flow of information leading up to it and resulting from it, through existing channels. One of the two suggested that for Maori, the project needed to be re-focused and re-strategised to better target Maori and to ensure that agreed-to-plans are followed up in a timely manner

One participant added that a Maori perspective should be inherent in the

advice given to a DHB by a consumer rep or organisation, while another person said that in small communities where Maori were the minority, "pakeha" concepts used to raise community awareness of the issues failed to fully engage the Maori community

Three participants said that opportunities to promote the project to Maori

have been lost by not having panui regularly promoted on television, including national Maori television programmes like Waka Huia and Marae

One person said that whanau should be better targeted and that the
project should have an increased kaupapa Maori influence. This person also felt that most of the project funding went to "mainstream" providers and that funding for Maori and Pacific providers seemed to be "lumped" together

One person said that greater information needed to be available for people
with experience of mental illness to access appropriate services

One informant added that the creation of the Maori Health Directorate was
a visible impact of the project

The use of "consumer music", "drama", and other "talents" was suggested
by one participant as a way the project could be making more impact with

37

Maori. Mahinarangi Tocker was noted as having made an impact through her music
Pacific perspective

Several respondents noted that the Pacific perception of mental illness is

traditionally one of a taboo subject and that an individual's shame was perceived as a family shame

One of the differences in the Pacific strategies for the Like Minds project
was the emphasis of ethnic based community/church based education classes, which have been instrumental in providing a forum to openly discuss and share experiences, as well as support and recovery strategies amongst families

The project has enabled the providers to come alongside and build
relationships with some ethnic community groups who in turn could develop their own community strategies. This process included engaging community (opinion) leaders to facilitate a change in perspective amongst communities, who were now actively referring their members to Pacific mental health services or requesting the services to come and address the community forums (an indirect outcome is higher levels of community development)

Of notable impact was the increased skill development of consumers as

their level of engagement in the project also increased. This also provided more options for consumers to aid in developing their individual recovery plans, which for one consumer, meant defining their own labels as a person with experience of mental illness (PWEMI)

Respondents offered many suggestions for the project to have more

impact. These included: prioritising initiatives; encouraging bi-lingual programmes; maintaining a holistic approach that included the physical, mental and spiritual aspects of the recovery process; and encouraging more interaction between mainstream, Maori and Pacific programmes
Other perspective

Comments included that the project had been a good ice-breaker and has made mental illness something people feel safe to talk about, but had only scratched the surface It was suggested that the project could make more impact by focusing on people with more "serious mental illness" and by having more emphasis on attitudes and behaviour

38

M ASS M EDIA

CAMPAIGN

There was a general feeling that the mass media campaign had
contributed significantly to the growing awareness by whanau, family, and community, toward mental illness

It was also noted that the campaign ads had served their original purpose,
but that it was now time to refocus the ads to portray a more everyday normal situation and to make the ads punchier

The majority of informants said that the ads needed to relate to and
portray the grassroots consumers by showing some of the more hardhitting realities of mental illness, but then ending on a positive note

The famous people ads were mostly acknowledged for their ability to draw
in viewers due to the famous people status, but were now seen as only providing awareness about a relatively small part of what it is to experience mental illness

Other comments included the media campaign having had a shallow

impact and that it had started off strongly but was now fading quickly, and that it needed a new boost of energy and to refocus itself

The Like Minds branding was still an issue of misunderstanding and

uncertainty for at least one of those interviewed

At least one person said that the campaign needed to focus more on
promoting mental health as everyone's responsibility or as a greater collective community responsibility

A number of people suggested that a documentary having the same focus

as the new ads and running alongside the ads, would serve as a beneficial adjunct to the ads

Two participants mentioned the following about the ads:

"Too much is left unsaid, it's difficult to communicate a wider [message]" (KI 01) "I'd like to see ads with people with mental illness that aren't celebrities; couldn't they take it from every different region in New Zealand?" (KI 03)

Maori perspective

One participant person mentioned that a longitudinal study of someone

with experience of mental illness screened alongside the ads would be beneficial. Mahinarangi Tocker was suggested by two participants as a possible focus of a study of similar to the above suggestion

One participant said that apart from awareness raising, the campaign had
not impacted on Maori

39

 Concerns about the ads surfaced from a number of people.

These concerns included: it was wrong to make mental illness a novelty occurrence; more work should be done around schizophrenia and bipolar disorder; famous people seem to suggest that mental illness was "alright" and "en vogue" and in some ways gave a false impression of mental illness issues of secondary discrimination experienced

One suggestion was that the ads should also focus on children and cover
Pacific perspective

One respondent suggested that the Like Minds funding should move from
the Public Health to Mental Health funding stream. The rationale for this was that emphasis now needed to move away from promotion to more targeted initiatives

The same suggestion was supported by other respondents who noted that
it was now easier for Mental Health providers to undertake their work as a result of the collaborative efforts of the Like Minds project, while another respondent was more 'hard-hitting' and said that Mental Health services had no choice now [to be directly involved] with Like Minds in place

Some respondents noted the disassociation factor by Pacific communities

with the campaign as it was perceived to be too 'palangi' or too glamorised with the use of so many celebrities

Some

strengths and weaknesses were identified in the verbal communication strategies of the campaign. One respondent noted that there was a difference in the effect in the use of 'colloquial Samoan' rather than 'formal Samoan' when providing Like Minds material to the community (these were mainly different in perception, with "formal" denoting status which would be taken more seriously by island-born Samoan or those of higher cultural ranking). Another respondent noted that the languages chosen for the regional radio programmes were based on the larger national population group percentages which did not reflect fairly in the regions, thereby missing a number of potential consumers. It was then suggested that this may change with the new national Pacific network more effective rather than advertising campaigns. This would portray someone with a more serious mental illness and how they developed and managed their own recovery

Another respondent suggested a documentary style programme would be

Other perspective

Comment about the impact of the media campaign included: "very little"; it
has given people a language to begin talking about things that were otherwise thought of as unmentionable; and that it had b roken down some of the barriers of us and them

40

 Strengths of the ads were that they were well produced, very visual, had
good music, and were memorable

Weaknesses included: the ads had dealt with attitudes but not behaviour;
issues of poverty and oppression weren't addressed; the lives of the famous people were relatively privileged with only a few of them who knew much about the concomitant issues of poverty and marginalisation; and the ads did not reveal what experience of mental illness was really like for service users

Some people noted that there shouldn't be a need to portray mental illness
in a way that kept the public positive about mental illness, and that a " human face" should be used to allow people to tell their stories

N ATIONAL

LEVEL INVOLVEMENT OF PEOPLE WITH EXPERIENCE OF

MENTAL ILLNESS

In general, people with experience of mental illness were noted as having increased involvement in the project over time, at a national level regions, and because consumer networks all had differing service specifications and processes, it became increasingly difficult to gain national momentum on specific issues or to make strategic decisions at a national level concerning initiatives, activities, and direction

A small number of people noted that because funding levels varied across

One inference was that many regional consumer networks were engaging
in the project at least at a philosophical level, but were financially restricted in their ability to engage in a practical manner at a national level (poor cousins analogy)

One comment was that it was difficult trying to coordinate national

programmes with regional providers who were simply too busy

The National Consumer Advisory Group (NAG) was seen mostly as a very
positive feature of the project, opening doors and lifting the profile for people with experience of mental illness

Perceptions of the role of the NAG differed in that some felt that the NAG
needed to be more politicised and more visible in the regions, and to have greater input, while others noted having received very good support from the NAG

A few people commented that the NAG was not a national committee of
elected regional representatives and therefore did not have a formal feedback requirement to any regional groups

Feedback also included:

"I think you have a superb set of people[on] the national advisory group working very hard with

41

government agencies, with the community, but we work at a level that is very much hands on and we need to be able to effect things like policy even right up to parliament and I think that's where we need to be more effective." (comments on the NAG)(KI 10) "they're very goodthey network well, they're right up with the government agencies you know they have links in therethey're able to make change, as role models, yeah they're very good role models" (comments on the NAG) (KI 07)
Maori perspective

At least two of the Maori key informants interviewed noted that the Maori
network of providers needed to refocus their activities and to re-strategise in order to be more innovative and provide greater impact with Maori

One person noted that coordination of the project was difficult at times
because not everyone had the same whakaaro, but said that the process of consumer inclusion at a high level had been excellent, commending the project manager for his excellent sensitivity

One person suggested that the NAG in essence modelled a type of

"tangata whai oratanga" and that NAG members made great role models for other tangata whai ora
Pacific perspective

One respondent noted the increase in emphasis of the National Advisory

Group and the undue influence they may have on the Like Minds project manager in comparison to the regions. This was because the managers had changed so many times during the course of the contract that some consumers were further ahead on some issues, while other respondents noted the need for more emphasis on the regional initiatives

Other respondents however, supported the national groups and stated that
they considered them more effective because they could influence policy

Most noted they were keen to see the funding continue and that the
programmes needed to ensure positive outcomes that would hopefully increase funding
Other perspective

National level involvement of consumers had been very positive and

empowering

It was good in principle, but there had been a few problems defining the
role of the National Advisory Group

Some were unclear what the processes and policies around the National
Advisory Group were i.e recruitment etc

42

R EGIONAL

LEVEL INVOLVEMENT OF PEOPLE WITH EXPERIENCE OF

MENTAL ILLNESS

In general, people with experience of mental illness were noted as having

increased involvement in the project at a regional level over time

People mostly described the involvement of people with experience of

mental illness at a regional level as "patchy" while a few noted good involvement

Other responses included:

"I think we have the same problems that everyone experiences is that the same few people are used to do everything and that can often lead to stress and unwellness" (KI 10) "Well I think I like the NAG because they're sort of movers and shakersbut then you come down to a lot of the local groups that kind of stuff, they're not quite up with the play" (KI 07)
Maori perspective

One person noted the paradoxical impact of the "marae" in terms of stigma and discrimination in that it has been both a debilitating and regenerative venue for Maori

Pacific perspective

Many comments were made about the positive outcomes gained through
collaborative efforts at the regional level, although one respondent regarded the efforts to engage consumers as more tokenism than reality

One respondent noted that with the increased levels of engagement of

people with experience of mental illness, a lot of time was taken orientating new members, which could be frustrating for some of the longterm members

Another noted that as a result of the Like Minds project, people with
experience of mental illness that were engaged in consumer networks were more aware of services and their rights

There seemed to be some confusion about the roles and expectations

between national and regional consumer networks. One respondent suggested that communication between national and regional levels was not as active as it should be, while another suggested that it would be more useful to have a regional communication group which guaranteed feedback loops, rather than have the national body

43

Other perspective

A general feeling about regional level involvement included was that it was
good in some regions, but "tokenistic" in others

C HANGES

IN PUBLIC ATTITUDES

There was a feeling that it was still too early in the project to expect
people en mass to change their thoughts and actions which contributed to stigma and discrimination
Pacific perspective

Changes were noted within respondents' own family and community

circles, but most agreed that further work was needed

Most respondents noted that more people were able to discuss issues for
people with experience of mental illness more openly as a result of the project

C HANGE s

TO PROJECT

A number of people said that there needed to be increased capacity in

terms of people and resources within the project and that the project should eventually be consumer driven

The same people noted that people with experience of mental illness were
the experts, and had the solutions and skills needed to change the project over the next five years

Similarly, one person noted that direct contracts with tangata whai ora
groups should be pursued by the funder, while another person suggested developing strategies to do with handing over the running of the project to tangata whai ora

One comment was that the NAG should have a greater involvement in the
project, possibly through some sort of talk-back radio programme, in partnership with the Ministry of Health

The use of a Road-show and more public venue events about mental
health were suggested as possible areas for change

Some said that there was a need to ensure that providers who were not
meeting service specifications were replaced with new providers

One person expressed concern that despite the Community Voices

presentations being a useful way of increasing public awareness, there were elements of the activity that were not empowering for those involved (if the person feels they have no role beyond their public speaking slot)

44

 One participant added:

"we're the experts, we do know this discriminating feeling, it's not to dismiss any other people or marginalise other groups that have the same types of discrimination happening, but we know what it is and collectively, you know nationally, locally, regionally, we've got the solutions as well and we have the skills. It's just having the capacity and probably the resources to some extent to capture all that really" (regarding a consumer driven project)(KI 06)

Another noted the need to remove:

"middle-class paternalistic providers who don't know how to work with the marginalised" (KI 01)
Maori perspective

Maori participants were especially keen about using a Road-show and

music to promote the project
Pacific perspective

There was support for people with experience of mental illness that were
able to manage their own recovery, to be better utilised in the project. One respondent suggested that a contract for delivery that involved a partnership between people with experience of mental illness, groups/advisers and a provider to co-lead a contract, could be considered. Another respondent noted that with the experience built up by advisers, a more hands-on direct delivery contract could be considered

One respondent suggested more partnerships between ethnic providers as

a solution to generate better impact for the project.

Another suggested a partnership with Consumer Advisory Groups and the

DHB's

One respondent noted that 60% of Pacific people with experience of

mental illness were not accessing the Pacific delivery channels. This was because these channels focused on those that were island-born and fluent native speakers and meant that the mainstream delivery channels were servicing the bulk of the Pacific clientele

One respondent indicated that as a parent it would be useful to include the

rights of a parent with experience of mental illness as a focus of the project
Other perspective

Needs to start to impact on mental health services

45

P ROVIDER

IMPACT

A number of people interviewed noted that there did not seem to be very
much innovation from providers servicing the contract and that mostly the same things had been reproduced each year

The same people spoke of the need for greater provider accountability to
the funder in terms of project activities and spending, and raised the issue of contestable contracts playing a major role in increasing that accountability

Provider impact was often dependent on the specific abilities of regional

providers and how well they linked in with both the consumer and general community at large
Maori perspective

Maori participants
accountability
Pacific perspective

were

especially

keen

to

see

greater

provider

Most suggested that more resources or the same resources should be

better targeted for the future

One respondent suggested consumer advisers should have access to

other fields of training to assist with their work, such as facilitation skills training

Another person noted that it was positive that the community support
workers were chosen because of their community experience rather than being mental health professionals

One direct impact noted by all Pacific consumers was on the Pacific
provision. Consumers noted the increase in collaboration between Pacific providers and how it could at times stretch services - when targeting different age or ethnic segments

Other consumers noted the direct impact on themselves in their continued

engagement in the policy development forums of the various committees. This impact was positive in terms of capacity building, but they also referred to the negative impacts of the demands the roles placed on them

M ENTAL H EALTH S ERVICES The project had served to highlight the very poor service delivery from
mental health services and while a number of informants noted that the project had encouraged mental health services to at least stop and consider its service delivery and attitudes, there was almost unanimous feedback from informants that service delivery had either not improved or improved very little as a result of the project

46

 One person did say that mental health services in their region had
changed considerably, with health professionals showing increased awareness, becoming more engaging, and showing respect for people with experience of mental illness

The same person noted that health professionals in their region were more
inclusive of people with experience of mental illness, particularly with regard to personal, legal, and clinical issues

Positive comments about the project influencing the mental health and
public health sectors, were that the project had promoted networking between organisations/sectors including MHF, Human Rights Commission, MHC, and mental health sector clinicians, and had promoted awareness of the voice of consumers

In terms of addressing the issues, a "top-down-bottom-up" approach to

targeting mental health services was suggested, including the use of intensive education sessions and the provision of options for change

Targeting mental health service conferences was suggested as a means of

increasing awareness for mental health services

Various comments from participants about mental health services

included: "There's been very little change" (referring to change in mental health staff toward people with experience of mental illness)(KI 03) "I think they still need a lot of intensive encouragement for want of a better word.with our psychiatric and mental health servicesthey need to actually make a transition [to] looking beyond our diagnosis and tailoring a service that caters to an individual need" (referring to local mental health services) (KI 06) "I dont think they want to know" (KI 11)

Pacific perspective

Most Pacific respondents noted that there had been changes. Some were
candid in stating that the MHS had little choice but to change

Most respondents were clear it was the clinicians that needed to change
their attitudes. One person specifically noted the older generation of clinicians did not appear to be adopting many of the principles of the Like Minds project
Other perspective

Participants noted that the mental health service were too busy firefighting to implement any major changes to its service delivery

47

 It was felt that the project could best work alongside mental health
services in the future by encouraging mandatory training and participation in the project (especially psychiatrists who were some of the most reluctant to change)

It was felt that training about stigma and discrimination could and should be a mandatory part of orientation for all mental health professionals.

G OVERNMENT D EPARTMENTS Most people said that in general, government departments had shown at
least some positive change in the way they interacted with people with experience of mental illness, although some people felt that there had either been no or very little change

Some said that WINZ, and in particular, Housing NZ, were now more
tolerant to people with experience of mental illness, becoming slower to react, more likely to listen, and more approachable

One person noted that government departments had good relationships

with key project workers in the region, where the local Police and the Police commissioner were very helpful and sympathetic to the project

The project has encouraged intra-department collaboration about mental

health issues and strategies in conjunction with the NAG

One person commented that the NAG was networking with a lot of the
government departments including the Mental Health Commission, Human Rights Commission, MOH representatives, and Crown Public Health, about a range of mental health issues

More educative workshops were suggested by people as the best way to

target government workshops more through forums departments, including using Hearing Voices

One person felt that government sector services needed to be targeted Other response included:
"I think the change is a lot slower there-but it'll happen and I think it's mainly because until things are actually put in policy, we won't see a lot of changes" (KI 12)

Pacific perspective

Most respondents noted that there had been changes, although they
admitted this was a slow process. Most changes noted however, were anecdotal and nominal, as in having posters up at WINZ lobbies

48

Other Perspective

Participants said that making training and participation in the project

mandatory for government organisations (in the same way that Treaty training has become a part of our existence) was the best way to work with government departments

C ONSUMER DHB' S

NETWORKS AND CONSUMER ADVISERS WORKING WITH

The overall feeling was that it was very difficult trying to get project
involvement by consumer advisers employed by DHB's

Given that there were 21 DHB's nationally, with 21 different job

descriptions for the adviser position, it was difficult to establish a consistency of service on a national basis

Other concerns about the role of consumer advisers centred around their
perceived lack of objectivity due to them often being seen as "captured" by their DHB employers
Pacific perspective

Several respondents noted that there needed to be better co-ordination

between the Regional and National Advisory Groups

Several respondents noted the skills development having already taken

place with people with experience of mental illness that were actively engaged in either the regional or national Consumer Advisory Groups. One respondent noted that more skills training would be useful in assisting with the delivery of the project

One Pacific respondent suggested that there could be more direct

partnerships with advisory groups and the DHB's, while others suggested that consumer networks could be involved by sub-contracting to providers, or that the consumer networks could become the providers themselves
Other perspective

There was a strong feeling that it was not appropriate for DHB consumer
advisers to have a role in the project

There was acknowledgement of the fact that DHB consumer advisors were paid and contracted via a different funding stream to the Like Minds Like Mine Project, and that therefore their engagement in the project was seen as inappropriate by many. to the Like Minds Like Mine Project currently undertakes

Consumer networks could take the role that the National Advisory Group

49

S OCIAL

MOVEMENT

Suggestions about how people with experience of mental illness could

create a sufficiently strong social movement, were to align themselves with other groups having successes in parallel fields, or to work more with other marginalised communities, including disability groups, to form a powerful lobby group

Other key suggestions included a better co-ordination of the project to

"bring it all together" and have a "full package", and to make full use of the "ground swell" that has already been created

Another person suggested having funding increased to match the extra

outputs

A combination of policy change and the stronger physical presence of key

advocates (national spokes-group) was suggested as a way of strengthening the movement. Policy change was needed in the areas of employment, human rights, housing, finance, and insurance

One person noted that inappropriate medication and not stigma and
discrimination was the main problem facing people with experience of mental illness

Another felt that the direction and defining of key issues would have been
different if people with experience of mental illness had been in control of the project from the beginning
Maori perspective

One participant said that the project needed greater community

involvement and embeddedness, and another said that it needed a "call to action" where all the providers were committed to achieving the focus of the project by having all providers "saying the same thing", creating a more focused impact in return

One suggestion from a participant was to model the movement on the

successes of existing autonomous tangata whai ora organisations

One person suggested that for Maori, the project needed to ensure that it
was holistic in its delivery and processes, using a model like the "Whare Tapa Wha" model
Pacific perspective

Suggestions of the Like Minds project being similar to some of the other
social movements raised interesting issues. All were adamant that involvement of the family and the community in accepting mental illness was a key to recovery. Several respondents noted that real movement would only be realised when consumers were actually driving the project

50

 One respondent noted that better partnerships and an attitude of respect,

which is in line with cultural accords, would be appropriate to build Pacific support for a strong social movement for people with experience of mental illness
Other perspective

A social movement was important and integral to ensuring changes for

people with experience of mental illness in New Zealand

L ONG

TERM

Keys to a successful social movement and long term changes included:

capacity building, human rights training and tools, genuine employment, workforce development, resources (people and things), people trained within their regions, greater consumer autonomy, education, strategic planning, greater provider accountability to the funder, a more unified approach between service users and non-service users, a positive change in mental health services practice, support from the Ministry of Health (from ministerial level down to grassroots), and a non-complacent attitude by project staff
Pacific perspective

Better outreach was a common theme.

Pacific respondents were generally keen to see better targeting of resources to the communities. One respondent indicated that more resources for Pacific would be beneficial as some providers were 'stretched'. Another respondent wanted more services running the project also suggested

More capacity building for advisers and community support workers was The same person also recommended making funds more contestable For the future, one respondent suggested a focus on the youth and media
as the best targets as they would be best able to influence opinion

One respondent suggested the need for strategies to generate better

recognition for the project internationally
Other perspective

The long term aim was to have the project totally consumer-run, eventually
ending with the project winding down after having made its desired impact

For the above to occur, consumers needed to continue to be resourced

and empowered

51

F OCUS

OF THE PROJECT ' S WORK

The overwhelming response from people was for the project to continue
targeting firstly the mental health services, then government organisations and agencies (including the Police and the Department of Justice), followed by media and media personalities, and finally the general community (including people with experience of mental illness, counsellors, social workers, religious leaders, and schools)

Some of the specific issues that needed to be addressed included: the

need to change the acceptance of bad clinical practice and its prescriptive nature; increased education of whanau; increased education of people with experience of mental illness so they are less accepting of discrimination; increased targeting of key people in policy and political circles; media perception and reporting of mental illness, service-provision

One participant noted:

"the problem with tangata whaiora is they're often disassociated from everything that normalises them, they're disassociated from well education, disassociated from their land, disassociated from their culture, disassociated from their familysometimes they lose their jobs-disassociated from the labour forceand the thing is like having some input not only into the community but also into tangata whaiora directly rather than indirectly. That could be another way in which the project could move towards in the next five years" (KI 02)

Maori perspective

One person said that key political figures like John Tamihere and Tariana
Turia should be targeted to promote positive attitudes toward mental illness

A number of people drew attention to the use of visual promotion and

reinforcement of the project through means such as billboards, newspapers, web-sites, television (including censorship), and movie venues, and stressed the importance of better targeting of the whanau, including younger children

O THER C OMMENTS Comments included: the need for ongoing research; the need for mental
health professionals to "come on board" to add impetus and to be seen to be "validating" the project; increased education and workshops for all audiences; the need for the project to be consumer driven and to serve as a template for future programmes; and that the project has been a great start to addressing mental health issues

52

A PPENDIX 1: K EY

INFORMANT INTERVIEW SCHEDULE

QUALITATIVE INTERVIEWS WITH KEY PEOPLE WITH EXPERIENCE OF MENTAL ILLNESS INTRODUCTION Thank you for agreeing to take part in this interview. Have you read the information that was sent about the research and do you have any questions? I would like to tape-record the interview so that we can get it transcribed to assist with the analysis. It will also speed up the interview, as I won't have to take notes. Are you agreeable to this? There are a number of issues that we want to address, so the interview may take up to an hour. If you wish to have a break at any point, please let me know. We can split the interview into two or more parts if you wish. IMPACT OF THE CAMPAIGN 1. What sort of impact do you think the project has had so far? 2. What are the areas where you think the project has been particularly successful? 3. What evidence have you seen of project impacts? 4. What are the areas where you think that the project could be making more impact and in what ways? THE MASS MEDIA CAMPAIGN 5. I would now like to discuss the two phases of advertising and the hour long documentary that were funded as part of the mass media campaign. Apart from awareness raising, what other impacts do you think there have been from the advertising? 6. What do you consider to be other strengths and weaknesses of the advertising campaign? 7. Concern has been expressed by some that the ads do not portray what mental illness is really like. Do you see a way in which the ads can portray what mental illness is really like, while keeping the public feeling positive about people with experience of mental illness? 8. What other advice would you give about the future focus of any mass media campaigns?

53

THE ROLES OF PEOPLE WITH EXPERIENCE OF MENTAL ILLNESS IN THE PROJECT 9. How do you feel about the level of involvement of people with experience of mental illness in this project at a national level? 10. How do you feel about the level of involvement of people with experience of mental illness in this project at a local level? 11. How would you like to see this change over the next year and over the next five years? 12. What role do you think the developing consumer networks, and consumer advisors working with DHBs might take? 13. In other social movements, social change has been driven primarily by the people themselves eg gays, those subjected to racism etc. To what extent do you think people with experience of mental illness can create a sufficiently strong social movement in NZ to begin making a real difference? 14. What support would be needed? IN THE LONG TERM 15. In the next five to six years where would you like to see the project? 16. What sort of things need to happen now to make sure that this is achieved? FOCUS OF THE PROJECTS WORK 17. If the project were to become more focused on addressing attitudes and behaviours of particular audiences, who do you think are the priority audiences whose attitudes and behaviours we should be targeting? 18. What are the specific issues that you think the project should or could be trying to make a difference on? MENTAL HEALTH SERVICES 19. How supportive do you think mental health services and staff are towards this project and its objectives? 20. In what ways, if any, do you feel mental health services have changed as a result of the project? 21. What changes (if any) have you seen or experienced from the mental health services that might be as a result of this project? 22. What are your views on the way that the project could best work with mental health services in the future? 23. Who in the MHS should be targeted?

54

GOVERNMENT DEPARTMENTS 24. Have you noticed any changes in the way any government departments interact with people with experience of mental illness? 25. ( If yes ) What are these changes and in what organisation? 26. How do you think this project can most effectively work with government departments in the future? OTHER COMMENTS 27. Do you have any other comments you would like to make?

55

A PPENDIX 2 - N ATIONAL C ONSUMER S URVEY

P age1

SURVE Y
Please read before completing

Thank you for agreeing to take part in this survey You DO NOT need to put your name anywhere on the questionnaire You can skip any questions you do not wish to answer Please tick beside your answer for each question. For some questions you will be told you can tick more than one box. Please feel free to add extra comments anywhere you wish

P age2

Please tick to indicate your answer, or write in the space provided.

ADVERTISING
1. Have you seen or heard the advertising on TV or radio featuring famous people who have had experience of mental illness? Yes No Go to Question 5 Don't know Go to Question 5

2.

How much do you like the ads? Like them a lot Neutral/neither like nor dislike Dislike them a lot Like them a little Dislike them a little Don't know

3a.

How much do you think the ads are helping to reduce stigma and discrimination associated with mental illness? Helping a lot Not helping Go to Question 4 Helping a little Don't know Go to Question 4

3b.

In what ways do you think the ads are helping?

4.

Please write in any other comments about the ads and any changes you would like to see if further ads are made.

P age3

KNOWLEDGE OF THE PROJECT

5. Apart from the advertising, how much do you feel you know about what is happening as part of the project to reduce stigma and discrimination associated with mental illness? Know a lot Know nothing Go to Question 9 6. Know quite a lot Know a little Don't know Go to Question 9

You may tick more than one

Which of the following are ways in which you have found out or heard about the project? From the national "Like Minds" newsletter From newsletters produced by regional organisations working on the project From people working on the Like Minds project From mental health services or people working there From other people In other ways (please write in)

IMPACTS
7. Overall, how much do you think these other parts of the project (apart from the advertising) are helping to reduce stigma and discrimination associated with mental illness? Helping a lot Not helping Don't know 8. Have you worked with, or do you know of, any organisations that work on this project in your region? If yes: Please list the organisations. Helping a little Some are helping and some are not

INVOLVEMENT IN THE PROJECT

9. Have you taken part in any activities that were (or you think might have been part of this project? Yes No Go to Question 11e Don't know Go to Question 11e

P age5

11b. How stressful was it being involved in these activities? Very stressful Not stressful Quite stressful Don't know A little stressful

11c. Thinking about all the project activities you know of (not necessarily involved in), what do you think has worked well?

11d. And what improvements do you think could be made to any of the project activities?

11e. How many of the people currently working on the Like Minds project do you think have experience of mental illness? All A few Most None Some Don't know

11f. How many of the people working on the project do you think should be people with experience of mental illness? All A few Other (write in) Most None Some Don't know

P age6

CHANGES IN MENTAL HEALTH SERVICES

12. Thinking about mental health services (both hospital and community-based): what changes have you noticed or experienced in the level of stigma and discrimination associated with mental illness over the last three years? A lot less stigma and discrimination now No change A lot more stigma and discrimination now Never noticed or experienced stigma or discrimination at mental health services A little less A little more Don't know Had little or no contact with mental health services over last 3 years

CHANGES IN GOVERNMENT DEPARTMENTS

13a.WINZ (the Department of Work and Income): What changes have you noticed or experienced in the level of stigma and discrimination associated with mental illness over the last three years? A lot less stigma and discrimination now No change A lot more stigma and discrimination now Never noticed or experienced stigma or discrimination at WINZ A little less A little more Don't know Had little or no contact with WINZ

13b. Housing New Zealand: What changes have you noticed or experienced in the level of stigma and discrimination associated with mental illness over the last three years? A lot less stigma and discrimination now No change A lot more stigma and discrimination now Never noticed or experienced stigma or discrimination at Housing NZ A little less A little more Don't know Had little or no contact with Housing NZ

13c. The Police: What changes have you noticed or experienced in the level of stigma and discrimination associated with mental illness over the last three years? A lot less stigma and discrimination now No change A lot more stigma and discrimination now Never noticed or experienced stigma or discrimination with the Police A little less A little more Don't know Had little or no contact with the Police

CHANGES AMONG FAMILY AND WHANAU

14. What changes have you noticed or experienced in the level of stigma and discrimination from your family and whanau over the last three years? A lot less stigma and discrimination now No change A lot more stigma and discrimination now Never noticed or experienced stigma or discrimination with family or whanau A little less A little more Don't know Had little or no contact with family or whanau

P age7

CHANGES AMONG THE PUBLIC

15. What changes have you noticed or experienced in the level of stigma and discrimination from the general public over the last three years? A lot less stigma and discrimination now No change A lot more stigma and discrimination now Never noticed or experienced stigma or discrimination from the public A little less A little more Don't know

CHANGES IN MEDIA REPORTING

16. What changes have you noticed in the level of stigma and discrimination shown in media reporting of mental illness over the last three years? A lot less stigma and discrimination now No change A lot more stigma and discrimination now A little less A little more Don't know

MORE INFORMATION
17. Would you like to be sent regular information about the project? Yes No No, am already receiving information Don't know

If you would like to be included on mailing lists about the project, please enter your name on the separate sheet of paper that is supplied, and hand this to the person who gave out the questionnaires.

OVERALL SUPPORT
18. Overall, how much do you support or oppose the project, as it is currently operating? Strongly support Oppose Support Strongly oppose Neither support nor oppose Don't know

FUTURE DIRECTIONS
19. What sorts of things, or what groups of people, would you like to see the project focussing on over the next couple of years, to reduce stigma and discrimination? (These can be similar or different things to now.)

P age8

STATISTICS
20a.The following few questions give us some statistics on the sort of people who have taken part in the survey. Remember you are not required to put your name on this questionnaire, so all your answers are anonymous. Region where you live: Northland Bay of Plenty Taranaki Westcoast Otago Auckland Tairawhiti (Gisborne) Manawatu/Wanganui Canterbury Southland Waikato/Coromandel/King Country Hawkes Bay Wellington/Wairarapa Nelson/Malborough/Tasman Other (please write in)

20b. Sex: Male 20c. Age: Under 25 years 40 to 54 years 25 to 39 years 55 years or over Female

21. Which ethnic group or groups do you belong to? (You may tick more than one) Maori Pacific Islands (Please write in Pacific Island group) Pakeha/NZ European Other (Please write in)

OTHER COMMENTS
22. Please record any other comments you would like to make about the project.

T hank you very much for taking the time to complete this survey. Please fold the questionaire and place it in the return box (or mail it back if you have been given a Freepost envelope).

PPENDIX

3- S URVEY V ERBATIM C OMMENTS

Q22.

Please record any other comments you would like to make about the project

If you got the word mental out of it people wouldn't give me and my mates such a hard time. It's the word MENTAL that fucks it all up. Question: What do you say?" (001) "We're all doing really well. Slowly but we're getting there." (003) "I'm happy with the way the project is going." (004) "Being told you are being stigmatised, regularly, can make it difficult to keep a positive approach." (009) "I think there is no project, likely to have less stigma." (019) "You're doing well, keep up the good work." (021) "It's a good start." (023) "Very supportive and [far]less stigmatisation and discrimination." (024) "The project is very good." (027) "Make positive use of these surveys. Keep up the good work. Keep up the funding." (044) "More effort put into it!" (046) "No brilliant idea ever worked better than those fronting it at local level and their willingness to listen and learn and work co-operatively. I don't need a 'Mummy' and paternal/maternalism brings out the worst in me. I'm all grown up!" (048) "I would like to see a medication that would not be so shackling, and without side effects. I feel that the main thing of education and examples, that those in high places to be doing more in the field than behind computers etc. More monetary input for food that could be cooked 2-3 times per week. This is at M.I.S.T anyway." (049) "The ads have proven to support me when it comes to feeling acceptable in society. The project itself has

given me confidence to speak up about mental illness in my life." (051) "Have enjoyed being involved in the Like Minds project, have learnt new skills, gained confidence and become more outspoken in regards to issues surrounding mental illness." (055) "Have been with the Like Minds presenters group and assisting with Hearing Voices workshop. Intend to continue." (059) "I think that the project is wonderful. The TV advertisements are amazing. Thank you to the people who make this all possible." (061) "What's happening is all good." (063) "The ads are great but need more faces and races of people with mental illness." (064) "Keep on keeping on." (065) "I think we are doing a good job. Negative experience when speaking to Police." (070) "Consumers have been getting paid too much, for very little outcomes." (072) "Continue doing a good job." (074) "Na! I'm hoha now, sorry!" (075) "I think this project makes its point re 'Like Minds Like Mine' but it still needs lots of attention from governing bodies." (076) "All right." (079) "Letting people know how to deal with mental illness e.g. epilepsy). Many people suffer from this sickness, but no-one knows how to deal with it. Co-ordinators, people in charge need to know what to do when a person has a fit." (082) "More agencies bought on board." (090) "If you ask me what is the greatest thing in life I'd say He Tangata He Tangata He Tangata, its people. See more people talking about recovery." (091) "In some instances the organisations which umbrella the project can hinder what the project is trying to do." (093) "I would like to see more original plays and songs on TV as Like Mind projects." (095) "Very good thank you." (097)

"This project is tremendous to do, its a lot of fun. Thank you." (098) "More boost up. More energy. More a team effort. More action less talk. Our culture in our community." (101) "I would like to have other languages spoken to hear them because there are other people who don't understand English or don't have someone with them to translate." (102) "The project is very valuable and much needed in Mental Health." (104) "In an adventurous way I feel too much and so also class restriction for the Modules 2-12." (105) "Kia kaha! Make a stand and believe in yourself!" (106) "Housing eligibility to improve." (107) "To give more knowledge." (109) "Go hard. Kia kaha." (110) "Kia kaha." (111) "I wish you well in the future. I only have one request, that when you climb on the dais to receive your award to humanity, that you remember people like me who have done thousands of hours of voluntary work because a government official don't class us worthy of payment." (112) "I think they should keep it as famous people." (119) "Choice? A thousand miles starts with one step. A documentary in the life of Show a person ill through to recovery. Promote the ordinary persons, a couple married who both have illness, children." (113) "I feel that to have your say is very important and the ads project our feelings to others." (114) "To make a success." (118) "Anything I need to know I'll contact the person's involved for information, for information on any pamphlets. Have a good day. Please note the person just gave this survey all comments are my own non influence from anyone to write or say ok." (126) "Knowledge comes from experience comes from us. Like Minds like mine." (129) "A very worthwhile project." (131) "It is a pivotal part of mental wellness and the recovery process." (133)

"We need to 'educate'. I think the stigma and discrimination comes from days when they burnt witches at the stake. People fear sufferers. We need to encourage mental illness being included in culture, movies, poetry, writing, art and music. Both sufferers and all others need to learn acceptance of brain disorders." (138) "Education! You can never give people too much information maybe focus on lessening fear i.e. maybe when someone is episod[ic] (i.e. bi-polar high or low) they have special needs, but when their problems are managed they are the same as everyone else don't be threatened by what you don't understand." (140) Like Minds has helped make my life more enjoyable. I'd like a piece of the action. We know of the media prominent people and ideas, but where are the like minds around us? How come the support groups still struggle for money?" (146) "Very, very good move. Time for mad liberation . People with mental illness not only suffer from their original distress but also often lax their social roles. Destigmatisation helps a great deal." (148) "Need to change ads. Care givers should have information to give to clients if they are interested." (149) "Maybe anything that comes out of it in the way of progress or lack of it is relayed to people." (150) "If funds allow there should be pamphlets sent to peoples homes explaining the illnesses and how hard it is dealing with an illness and side effects of medications but most of all letting the public know we're not all dangerous or criminals." (159) "I think that people can be judgemental about mental illness because they are afraid of the unknown. A lot of people have stereotyped ideas of what mental illness is but they are often wrong and I have found through personal experience, that when I enlightened someone on what schizophrenia really was, they were quite amazed and didn't realise that their idea was not true." (161) "I enjoyed this survey on mental illness it gives me some idea where I stand." (163) "Good, but it may be good to have the public actively involved somehow instead of positive." (166) "Keep up the good work. More funding. Get bigger. Glass on frames for art show where necessary. Deal with society's stigma that schizophrenia labelled people

are dangerous. Explain psychosis etc. to general public. Empathy. Another 3 years funding at least." (168) "More counselling. Less medication. The attitude of staff was probably the main factor in which the patient's could benefit in activities." (171) "More famous people and some ordinary people." (173) "Interesting knowledge." (175) "I feel a media comment that the people depicted in the 'Like Mind' advertisements did not have severe mental illness, invalidated the whole campaign, by implying there was another group of people who were the real 'nutters' the seriously mentally ill." (179) "Keep on keeping on." (183) "Would like to express 'Whariki: Whaiora Whanau/family services is a relaxing place, takes away burdens. Need more places like this!" (184) "I believe that it would be a positive change to let other providers have a chance in running the project. I believe that this way we can have turns in changing things around by trying different ideas and we can keep on trying till we find what works better and more effectively." (188) "There is not a bigger profile amongst mental consumer about people who run these projects. I don't know them off the top of my head. I'm sure I've heard of them I just don't know what they do." (189) "The project has given some view point that most people would be able to understand, that more communication is needed to see the value of human life without the stigma of mental health, which has been put there by people who do not understand it in the first place, therefore effective ads are a good start to helping the community." (192) "This initiative is wonderful and very vital. We need more programmes like these to target all ages and cultures. Funding for these initiatives is money well spent." (193) "Excellent stuff." (197) "I would like to commend you on all the various efforts that have been made through the Like Minds project in reducing stigma and discrimination and the raising of awareness and not to be ashamed or discouraged and

that its a joint effort by all and finally that there is hope out there. Thank you. Kia ora." (199) "Help others in less fortunate [circumstances] than us and get their mana back." (200) "Keep it up, good work." (201) "Good luck." (202) "Project sound advertising, adequate targeting bias and attitudes of smart mouthed people who think nothing of putting people down." (203) "More Pacific Island people working in the project (South Island)." (204) "Excellent project." (205) "I believe that the ads are helpful, I also feel it would be beneficial for families of those suffering from mental illness to be more involved in these ads. If there in any way I can help to reduce stigma in the community by speaking about mental illness please feel free to contact me. Thank you." (206) "I appreciate the time and input put into the people involved in the project and the service it provides for those who are unwell and well alike. People who have become independent from the place they were living shows me a path for which to travel along. Looking to a bright future." (207) "Money out of our personal allowance paid for the bloody power bill. A much nicer support worker that is not silly." (208) "Keep up the good work. Rome wasn't built in a day. Everything is difficult before it is easy." (209) "Not happy with provider openness." (210) "Great idea. Keep it up." (211) "The project has come a long way in the past 5 years. I don't always get to know the results but I do know we are getting the word and education out into our country and it must be having an effect. I don't know changes to groups e.g. Police but I do know of individuals in these groups who have been enlightened by education I do not wish to generalise." (235) "I feel the Co-ordinator of the Tairawhiti Like Minds Project Margaret Price does a superb job. In the time

she has been Co-ordinator things have moved and the general public is much more aware. Also she is well supported by Tauranga Health." (236) "If there was less stigma and discrimination associated with mental illness then maybe it wouldn't be quite so difficult for people diagnosed with a mental illness to accept it. Let's face it AIDS has less of a stigma attached to it than mental illness. That is probably due to massive publicity and education programmes. The stigma of mental illness needs to be attacked as aggressively as the AIDS Foundation have done with AIDS." (237)