In 2017 I met with Guy Baker from Te Kupenga Net Trust. Te Kupenga Net Trust is a mental health & addictions peer support & advocacy service here in Gisborne who are doing amazing things in the community. We talked about seclusion which is something that happens in psychiatric units because it is in the law. The Mental Health (Compulsory Assessment and Treatment) Act 1992 says:
s71 Right to company, and seclusion
(1) Every patient is entitled to the company of others, except as provided in subsection (2).
(2) A patient may be placed in seclusion in accordance with the following provisions:
(a) seclusion shall be used only where, and for as long as, it is necessary for the care or treatment of the patient, or the protection of other patients:
(b) a patient shall be placed in seclusion only in a room or other area that is designated for the purposes by or with the approval of the Director of Area Mental Health Services:
(c) except as provided in paragraph (d), seclusion shall be used only with the authority of the responsible clinician:
(d) in an emergency, a nurse or other health professional having immediate responsibility for a patient may place the patient in seclusion, but shall forthwith bring the case to the attention of the responsible clinician:
(e) the duration and circumstances of each episode of seclusion shall be recorded in the register kept in accordance with section 129(1)(b).
Here is our interview:
A: Could you please tell me how you ended up doing what you do here?
G: At the time I was working for the GDC (Gisborne District Council), and I spent eleven years working mainly in liquor licensing for the Council. It was during the latter part of my time there that I was diagnosed with severe depression. Fortunately, what the GDC had in place was an assistance employment program that successfully helped me in my recovery journey. Through that experience, I was able to talk about what it meant to go through my journey, letting my story become public and the reactions that came with it from colleagues, whānau, friends and people who knew of me. I began to do speaking engagements as well particularly to employer management teams and consumer groups, recounting my experience through Council’s employment assistant program. This began to develop my passion to be involved with mental health, and two years ago I found myself here at Te Kupenga Net Trust. My role is the consumer leader and what I do is represent a consumer voice at a local, regional and national level. At the local level I sit at decision-making tables within the DHB.
A: Oh neat!
G: Yeah it really is neat to sit at that table, and it is great that the DHB is receptive for that voice to sit there. At a regional level, I am chairperson of the Regional consumer leadership forum (He Tipuana Nga Kakano) for the Midlands region. At this forum there are two consumer representatives from each of the five DHBs, that come together each quarter where we discuss issues within our own areas that also affect our region. As chairperson, I also represent the Midlands region on a national forum for those who themselves, have had previous lived experience of mental health or addictions. That group, Nga Hau E Wha, has a contract with the Ministry of Health to inform them of sector intelligence for our consumers. My role within Te Kupenga Net Trust therefore differs with my colleagues who are mainly involved with peer support and advocacy on a one to one basis.
A: Can you tell me about the ending seclusion movement, and why in particular it is important to you?
G: Hauora Tairawhiti is the only DHB at the present to commit to ending seclusion, by February 2020. A lot of other DHB’s have committed to reducing seclusion, with a long-term goal to end it eventually. Seclusion, in my opinion, is a barbaric practice.
A: I agree, I have been in seclusion myself.
G: Me too.
A: When I was 18 years old, and it caused me further trauma and did not help my recovery. It made me not feel safe.
G: Yeah, many who have been secluded have said through debrief surveys that it is not a nice place to go. This raises my passion to be involved in ending seclusion because, personally, I don’t think it is a form that contributes to the wellbeing of our whānau. There are many countries that have long got rid of seclusion and we have staff that have come from overseas and find out that we continue with this.
A: They would be appalled?
G: Absolutely, they are.
A: Because people don’t even know it happens in New Zealand, they just think “oh well that was back then”! But no.
G: Hauora Tairawhiti has been very positive in promoting the end of seclusion and I am proud to advise, when I go to the forums that I do, how we are going forward and progressing. We have a group simply called the Ending Seclusion Group, chaired by the manager of the acute adult inpatient service, ward 11, and Te Kupenga Net Trust staff sits with that as well as other senior staff in the hospital.
A: What are the steps to getting it going?
G: It is looking at a plan as we progress forward. The date we are aiming for is Feb 2020 where we chuck the key away however, we are focusing to be up at running as from September 2019. We are planning to have in place initiatives that we feel will help cope with what is required to end Seclusion and beyond.
A: Do you get input from Consumers as well?
G: Yes, we have been collecting data for three years, and that is by way of peer de-briefs. This means we interview everyone who has had a seclusion event and we ask questions about their experience and how things can be done better. That information is formulated to assist us to plan certain initiatives There were three seclusion rooms in the hospital however, one room has since been de-commissioned. That room has been changed into a low sensory environment (de- escalation) and this looks to be the way that we will be progressing in providing alternative means of dealing with seclusion. We accept that there will be a small percentage that will require some acute care.
A: Is it also to do with the resources and what you have there?
G: Yes, we are looking at changing the environment, because one of the things that has been said from the feedback is that it is like a prison, it’s cold its very unwelcoming and people feel alone.
A: Yes, it doesn’t feel like a place of care, when some-one is in deeply distressed and confused, you want your loved ones to be able to be around and offer support?
G: Sure, and one of the things we are looking at to incorporate is how whānau can be involved in that area which is still going to be a separate area from the main ward. This is because there is a need for people to have time out to allow them time to come to terms of what has been annoying them. Sometimes it is not always the answer for them. One of the other things we are looking to develop are daily activities and programs. Again, feedback says that they have nothing to do once admitted to the ward, so we are considering initiatives like life skills that will help them when they transition into the community.
A: Such a good idea!
G: We are introducing Mahi-a-Atua, it is basically purakau/stories of Māori Gods in a manner that our Atua (Gods) had personalities of their own. There are over seventy of them, so there is a Atua that someone can relate to, so rather than say someone is depressed or has depression, we are preferring to talk along the lines of the stories of Uru, who is the eldest Atua and in his story, he became withdrawn. So, we prefer to talk in a purakau sense, rather than attach a clinical language, which raises barriers.
A: Absolutely, that means that you have a relationship, right? Even hearing voices can be a spiritual thing for people, for people diagnosed?
G: And we have a story relating to that as well. So, the whole move in Tairawhiti is looking at things holistically, and seeing the benefits of how that can be incorporated into one’s wellbeing.
A: Thank you so much for this information, and it is like what we write about on our own website (Mad in Aotearoa). But for me, coming out at telling my story online, and saying I had this diagnosis, but I can now see positive things coming from it. Feeling resilient, and now being part of the madpride movement. That not it’s not just a negative thing. Knowing about Te Whare Tapa Whā. All four being important to build your whare.
G: We have a consumer advisory group here, which is made up of all those whānau who have transitioned into the community and continue to access community mental health services. We have monthly gatherings where we talk about issues that concern them as well as having a guest speaker. One of the issues we have talked about is going into seclusion, being scared, lonely, de-humanized, when people bang on the door they aren’t allowed out. Sometimes the police are rung.
We want to end seclusion, but at the same time do things safer and there is lots of korero about how do we put things in place and to be successful. Ultimately, it does come down to money. We had the DHB Board come through and look at the seclusion area, and I can honestly say, that there were more than one or two shocked faces because the area hadn’t been addressed in 30 years, which was something that they were not aware of. So, we are hoping that that visit has put some priority on addressing the need to make changes by 2020.
A: And it also goes for the staff that are working there?
G: It does and there are a lot of emphasis on the training needs for staff, but it also is about a change of culture. These are all considerations that need to be put into place.
A; Do you have to apply for funding through the DHB?
G: Yes, we are applying through the DHB. We are looking to turn all the seclusion rooms into an environment than allows to de-escalate, but also have that contact with staff who are there continually for that one on one support, and with whānau. We view whānau as very much part of one’s well-being and this is a perspective of some of the positives that are coming through.
We also acknowledge that there are some concerns about ending seclusion. Does that increase the need for medication? Does it increase the need for restraints etcetera? What we are looking at are innovative ways in dealing with such situations, that if applied correctly that there would be no need for that sort of thing to occur, for example better communication, implementation of Mahi-a-Atua and the like. We accept that at times, that medication needs to be employed because medication can de-escalate a situation however, medication should be the last resort.
A: Yes. I think to have your own autonomy when you are in mental health services or under that mental health act is important.
G: This is a whole new change, and we are hoping that with whānau, with activities, and initiatives that these will all help in there being more of a cohesive and collaborative in-patient service as well as helping to reduce the need for community treatment orders, which are disproportionally very high.
A: What can you tell the readers to sum up? What is the plan?
G: As we work to 2020, we are looking at decommissioning the other two rooms, which fits in with our plan and what it takes to support our staff in terms of where they need to be. This involves staff training and maybe changing practices. It also requires a collaborative approach to the whole concept not only from within the DHB but also with stakeholder organisations within the community.