A national directive to bring down seclusion rates was taken as a serious challenge at Tairawhiti District Health Board, where seclusion rates were one of the highest in the country. The DHB’s acute mental health unit Te Whare Awhiora worked collaboratively to reduce seclusion rates for Maori and all service users, and a dramatic drop was achieved.

Participation by service users has been sought in regards to almost all decisions around the process and policy since the service was challenged to reduce seclusion, says Chloe Fergusson, consumer leader at Tairawhiti DHB Acute Mental Health Service.

“It is not that participation didn’t exist before but there has been a strong focus on the importance of it and the value of it.”

Chloe says this has opened up conversations within the community about what is best for the people accessing the service.

“For example, a forum has been set up in the inpatient ward where service users can gather and describe in their own words what they like and dislike about the ward and what could be done better.”

The fact that many of the changes are implemented acknowledges the value placed on service users input.

“We could have had all the service users in the world lining up to have their say, but if no one was willing to listen and make appropriate changes it wouldn’t have mattered,” explains Chloe.

Service users were also part of the steering group that developed and activated the action plan to reduce seclusion, including the development of the sensory modulation room. 

Creating a mural for the low stimulus environment was another important inclusive activity for service users. Some expressed their concerns that they may still have to spend time in that environment; this became an important component of ensuring they participated in changing the current practice.

“The activity offered people the space to reflect on how important it is to move away from seclusion as a service, and sparked their interest to feed into other service changes through various forums in the ward and in the community,” explains Chloe.

The process of care planning meetings is another area Chloe says has significantly improved. Service users are now invited to the meetings and participate fully in the discussion about the care and treatment they feel will be helpful for them.

“However, because people aren’t used to participating in care planning meetings, it has been a new experience for some people to have a voice in their treatment. So it has also been important to increase advocacy and peer support involvement (which is consumer participation too – as the organisation providing those services is consumer led) around this,” says Chloe.

Overall the inclusion of service users has improved immensely, she says. Service users are asked about their sensory preference, supported to get recovery plans done, and asked individually and in forums about the treatment they desire while in the inpatient ward. They are informed about peer support, advocacy, whanau support and cultural support, and then supported to get it.

Chloe points out that this increased participation and choice in service delivery and care planning has made service users excited about the skills they have and what they can contribute. “I think it’s fantastic that people are feeling able to ask for things that they need. And I hope they keep asking, and keep participating, and we keep improving.”

However, Chloe says it is not yet a perfect service, and there are still times when people still don’t feel heard.

“Complaints, suggestions, and lists of improvements aren’t framed as attacks on the service, but interpreted as a way to find quality improvements. The service now has a willingness to look at other ways to do things  and that is what makes the place special. I feel confident that the list will get done – and then get longer – and then get done.” - Chloe Fergusson, consumer leader

“If you like jam, I will not know what kind of spread you like on your toast unless I actually ask you. If I make the assumption that you like marmite, it won’t matter if I put it on the best bread in the world, chances are you won’t enjoy it as much as jam. Similarly if you make a commitment to reduce seclusion and you don’t involve service users at every turn – why would you be surprised if nothing that you do actually works for us? It is really that simple.”