1. ‘Opening Doors’ to change
Introductions… Who we are, who Awareness is, the project, it’s novelty as a consumer-led collaborative project
A consumer-led seclusion elimination project

2. A major issue according to both members stories and statistics released…
Seclusion became a focus for Awareness (Canterbury Mental Health Consumer Network at the time) around At meetings, people who had recent experience of being in the inpatient service were sharing their stories of issues with how they were treated. A major concern was the use of seclusion. People experienced being in distress and staff responding by placing them in a locked room alone. Members were finding this didn’t help them and caused even more distress. Around the same time, the Report of the Director of Mental Health was released. Canterbury was shown to have the highest rate of seclusion in the country. Though there was some inconsistency in how the stats were gathered between DHBs, we still strongly felt that Canterbury had too much use of seclusion and a great need for some kind of campaign from a consumer perspective on reducing and eliminating seclusion.

3. Targeting policy to make seclusion less of an option for staff and services
Seclusion became a priority for the consumer network, and in looking into the disproportionately high rates of seclusion in Canterbury services, we found the existing CDHB policy on seclusion lacking. We thought, if the DHB policy were to change to make seclusion less of an easy option for staff, changes in practise that recognise the significance of a seclusion episode for service users would follow. So our first approach to challenging the use of seclusion was quite typical of consumer action. We established a seclusion elimination project group, which looked critically at the policy as it existed and submitted our suggestions for improvement.

4. Changing policy vs. changing practice on the ground…
While we received positive feedback around our submissions, little seemed to be changing at the policy level, let alone for practise on the ground in the inpatient units. We decided to change tack and add to our policy work. We started looking for ways to get our voices on seclusion experiences out to the staff working in mental health services, who make the call to seclude service users, often very unaware of the trauma and distress those on the receiving end experience.

5. Established means of telling our stories could be unsafe for consumers
But established approaches to telling our consumer stories were fraught with issues when it came to seclusion. Traditionally consumer perspectives in staff education have been delivered in person by consumers often on their own, talking to many staff members. While this has worked for some services and consumers on other topics, seclusion was different, as the trauma and distress experienced by consumers who had been secluded could be unsafe to raise alone and in front of a room of staff, there was the possibility of coming face to face with a staff member who had secluded the person, and there was too great a risk of presenting being triggering for people.
Adding to this were the usual issues around consumer participation which we came to acknowledge as barriers in themselves– it would be time consuming, with many trainings to attend, reimbursement for consumers sharing their experience and expertise had not been developed in a consistent or valued way, and we would have little control over the context of the learning, consumers perspectives often being embedded in clinical trainings to add another facet to the overall training but at times not progressing beyond tokenism.
By now the Seclusion Elimination working party, were aiming to create change in the way staff worked with service users experiencing distress and find alternatives to seclusion. Many discussions were had within the group around how to overcome the barriers inherent in traditional consumer participation, and specific to challenging seclusion, and we agreed a new approach was needed.

6. Our solution? A short film sharing our experiences
This is where the idea of creating a short film came from. It would be an engaging form of consumer education and by developing a DVD of people telling their stories, we would be creating a permanent resource that avoided the barriers and triggers involved in attending staff trainings in person. By developing a training discussion document to be used alongside the film in staff training, we would also retain some control of the context in which consumer stories were told by asking staff to think about moments in the film in particular ways.
With this plan in mind, the group was moving forward with excitement a feeling of “Let’s go for it!”

7. Barriers to achieving change
While our enthusiasm for making change remained high, numerous setbacks prevented the project from getting further off the ground. The main barrier we came up against was a lack of funding. We applied for a mental health media grant, and submitted applications to other community funding sources with no success. Adding to the strain was the fact that we had no base operational funding, and no paid staff. As a network of volunteers with stretched resources, struggling to secure external funding meant the project stalled for two years while we submitted funding applications, taking a huge toll on members. Over this time membership of the seclusion elimination project group dwindled and the project almost died.
A key question for us in developing this presentation and getting a sense of our project in the wider context of consumer-led change, became why more service user led initiatives don’t happen? Reflecting on this period of the project, where no funding could be obtained to even begin our project, this may be the end point for many other innovative consumer-led projects.

8. We didn’t want to give up on the project, and in a last ditch attempt to raise funds we decided to pledge $5000 as a nest egg to get fundraising started and hopefully inspire other funders to get behind us as well. Being a democratic organisation, the decision to kickstart funding the film was discussed at several meetings, and with the endorsement of the wider membership a considerable amount of our savings went towards beginning work on the film.
It’s important to acknowledge that we were only able to do this due to having received one-off independent funding in the past and if we didn’t have this resource, we wouldn’t have been able to start and Opening Doors wouldn’t exist.
In having the faith to start, the organisations that supported us fed back we had shown a commitment to making the project happen. Having established networks
Our main funder was the national consumer network Nga Hau e Wha,
Around this time Awareness and MHAPS also received a contract from the CDHB to employ a coordinator for the consumer network. This made a huge difference as the job of chasing funding no longer fell on overcommitted volunteers. Organisations came on board with funding the film, and, with a coordinator putting time into growing and supporting the membership of Awareness, the seclusion elimination project group also grew in size.

9. “No-one asked me when I came in… what my cultural beliefs were… if they’d identified me as Maori, just because I’m light skinned doesn’t mean I’m not Maori. Talk to us, that’s how we treat our people, talk to us.”
One new person recruited to Awareness through our efforts to get out and talk with service users about what the consumer network should be focussing on was Darryn Williamson, who became an active member of the seclusion elimination project group and offered to share his experiences in the film.
Around this time choosing people to ask to appear in the film was the biggest decision for the project group. We sought perspectives from people within the group who were happy to share their experiences, and also approached others from outside the group with an explicit aim of ensuring the backgrounds of those appearing in the film were representative of people who experience seclusion. Given the incredibly high rates of seclusion experienced by tangata whenua, we were conscious to involve more than one person who could give voice to the experience of having cultural needs that went unmet, and of being secluded in this context. We were grateful to have Darryn’s involvement as well as Egan Bidois’.
Darryn recounts his experiences at Hillmorton Hospital in Opening Doors

10. Prior to beginning filming, we started to realise the benefit that collaboration with the CDHB mental health services would have. To start with, we wanted to be able to film some of the scenes in a seclusion room and on hospital grounds. We also were very clear in our aim for the resource to be focussed on presenting alternatives to seclusion and encouraging staff to make changes. If we could collaborate with the mental health services, and have staff appear in the film sharing their experiences of seclusion and it’s alternatives, the resource would seem more credible, and would likely appeal more to other staff who would encounter the resource in training – this was important as, taking on a controversial topic like seclusion, we expected some resistance.
As you can see from the picture, the DHB did work with us on the project and allowed us to film in their facilities.
Phil stands inside a room much like the one he was secluded in as a teenager

11. “Sitting here right now in a seclusion room, something I never thought I would have to do again, it’s a little bit spooky, a bit eerie and I’m trying not to shake too much…”
That’s not to say that it was a light decision on the part of the CDHB. The services wanted assurance that the focus of the film would be on positive alternatives to seclusion, not on airing grievances of people who had been secluded. Having an established relationship between Sal Faid in her role as chair of the network at the time, and Sandra Walker then general manager of mental health services helped a lot with this conversation.
Even though they championed seclusion elimination in their own services, the staff who would appear in the film also wanted assurance that it was not going to be a “dhb bashing” project, and shared their concerns about remaining on side with their colleagues, which could be compromised if the film had a different focus.
With the content of the Opening Doors being so personal, so sensitive, and inked to experiences of trauma and injustice for many people, striking a balance between treating seclusion as the serious issue we saw it as, and creating a resource that would be useful and change focussed for staff, and would not disrupt our partnership with the DHB became a constant point of reflection and a tightrope for us to walk.

12. “That first admission when he was so traumatised, when he was held down and he didn’t trust people, when he left the hospital, even though the health professionals had really cared for him and felt they had done their best, that element of trust was not there and so he didn’t continue taking his medication.”
With staff and consumer perspectives included in the film, we considered the need to also hear a family perspective as our family and whanau are often the people who pick up the pieces and support us when we are going through a particularly hard time, including being secluded. Phil who was a member of the seclusion elimination project group and had already agreed to appear in the film offered to ask his mum Ruth Spearing to also take part.
Ruth also is a highly regarded doctor working at the CDHB and brought her clinical and family experience to the film, reflecting on the way seclusion severed any therapeutic relationship between the staff and Phil, and what this meant for the family once Phil was discharged.

13. Egan reciting karakia “whakataka te hau”
Once we had approached people to appear in the film and the aim of the project was established with those who would take part, filming commenced, we became particularly conscious of this tension. Managing the project so that our aims of creating a positive, change-focussed resource, whilst still upholding the utmost respect for people involved and their stories, which they wanted to frame in ways that felt meaningful to them, was at times challenging. We were lucky to have a fantastic film maker on board who had his own lived experience, and took the time to let people spend as long as they wanted recounting their experiences in whichever way felt natural to them.
In the end it was the editing which allowed the story we wanted to tell to come across clearly. Through the words of those with lived experience, the film flowed from experiences, to the significant issues with seclusion, to solutions, and to a belief that services can change.
Egan reciting karakia “whakataka te hau”

14. Anne stands near the ocean recounting her experiences in seclusion her advocacy work since
A major reason for creating Opening Doors had been the lack of safety for consumers in established means of having input into staff training, meaning our voices on seclusion were minimised. This also had to be taken into account in filming. While some scenes were filmed at Hillmorton Hospital grounds or in the seclusion rooms, others were set far away from the hospital where people could feel safe sharing their stories.
Being a consumer-led project, we understood and expected that participants might find aspects of being involved challenging, and made sure that there was flexibility throughout the project so that people could feel safe and comfortable with the process. Again our amazing film team also worked in a really supportive way with everyone involved.

15. Opening Doors Launch
Once the film and training discussion documents were complete, we held a launch for Opening Doors in December 2012, inviting consumers, family and service providers from across the Canterbury mental health sector to see the first public screening of the film.
The launch was held at Te Awa o te Ora, the Kaupapa Maori service where we first met Darryn, and hosting our launch and providing kai was Te Awa’s way of supporting the project. It was wonderful to have a turnout of over 80 staff, managers, family and service users of mental health services who shared our belief in change.

16. Clinicians Wendy Lowerson and Tracy Boon talk about improving practice in the film
In receiving funding from Nga Hau e Wha, the National consumer network, we were requested to provide copies of Opening Doors to each DHB in New Zealand – making Opening Doors necessarily a national project. Conscious of the overload of resources experienced by some service staff, and the potential that a consumer developed training resource with no requirement to be used may not be picked, we tried to be strategic in the distribution of Opening Doors to minimise it’s chances of growing dusty on services shelves.
One of the project group members, Fiona, was attending a national gathering of the directors of nursing, who were responsible in their roles for coordinating training for staff. Fiona took DVDs with her to hand out to the directors of nursing in person. We also followed up with those who received copies of Opening Doors one year on to see how the resource was being used.

17. Anne Tacon, Associate Director of Nursing
“Just a quick note to offer my sincere thanks for the trainnig resource developed by your group.
As part of the DoMHN group, I was gifted a copy of this resource which will be of huge value to us.
We had already arranged a date for Wendy Lowerson to come over and meet with our staff, to assist us better address the use of seclusion at this DHB. We will certainly, as you suggested, include this as part of our ongoing work with training deescalation skills.”
Anne Tacon, Associate Director of Nursing
Some directors of nursing had made contact in the meantime with their feed back on the resource. And the feed back we did receive from people working in New Zealand mental health services was overwhelmingly positive and supportive.

18. “Hi Kelly,
We received this resource however it was misplaced soon after it arrived, our Nurse Educator requested another a replacement, but apparently this came at a cost of over $70. As a result we have been following Te Pou’s Core strategies for reducing seclusion. We would still be happy to receive this resource again.”
Of course there’s always the exception that proves the rule, and we received one response to our follow up which we think showed the resource wasn’t particularly valued. We haven’t taken this to heart too much, but in looking at what this person says (we haven’t named them because it’s a pretty embarrassing feedback) I think it really highlights some of the entrenched devaluation of consumer work.
To accept a free, professionally produced training resource, lose it, and then imply to the organisation that gifted the resource that they should send another free copy because it’s not worth replacing at the relatively low purchase cost is pretty bold, and I don’t think many people could imagine this kind of response being sent in the same situation if the resource was developed by a clinical or academic organisation.
So on top of all the practical barriers facing consumer-led initiatives, it appears that stigma and discrimination are also sadly still holding this kind of work back.

19. Is this possible and how much are they each?” Del
“Kia ora,
I got so excited about getting my hands on this as a teaching tool that I haven’t watched the whole video yet but love what I have seen. Getting the message across to some staff that reducing stimulation does not benefit people has proven difficult and I think it has been very powerfully and succinctly demonstrated here.
I’m hoping you would sell them across the tasman as it would be great if I could purchase some copies and the discussion points which I would look at using as an educational tool for staff across South Australian mental health units.  
Is this possible and how much are they each?”
Del
Something that was really positive and unexpected however was, in the weeks following the online release of Opening Doors and publicity within mental health circles about this, the positive feedback from people and organisations overseas.
The we received from furthest afield came from Neasa Martin, a mental health advocate in Canada who said “Thank you... thank you... thank you... for this powerful moving, insightful, and wonderfully directive video and toolkit.  This is a model for the rest of the world!”

20. Questions?
Comments?
Feel free to get in touch with us any time at or
The next step in our journey with Opening Doors is to work with Awareness’ research project group, LEADR, to re-contact those who received copies of the DVD and hear how they are using the resources and their thoughts. We keep a small stock of DVDs ready for distribution, take and fill orders, and reprint DVDs as needed. For anyone interested in purchasing a copy, you’ll be pleased to know that the person who provided that negative feedback was over-exaggerating, these come at a cost of $40.25 for the film and training resources on DVD. Or if you’d like the resources on both DVD and a USB stick, it costs $57.50.
Any questions, comments…..?