When she first started showing symptoms of illness around 15 years ago, Tuula Samulin was working in her dream job as a cultural history researcher and project manager. Her severe exhaustion was first interpreted as depression, but later the diagnosis was specified to be bipolar disorder. At the most difficult stages of the disorder, Samulin’s condition deteriorated several times. Her last treatment period at a hospital ended in late 2011.
“Recovery was slow at first, and finding the optimal medication took time. Seven years ago, I had recovered enough to study to become an expert by experience. I’m still on that path and I’m quite happy with my life,” Tuula Samulin says.
Samulin is the first expert by experience on a monthly salary at the City of Helsinki psychiatric services, where she works half-time. Samulin holds consultation hours for individuals and leads groups together with healthcare professionals at Aurora Hospital and Malmi Psychiatry Outpatient Clinic. Patients, or customers, as Samulin calls them, usually come to see Samulin with a list of prepared questions or a topic they want to talk about.
“Often, customers want to talk about substance use issues, since I also introduce myself as a former alcoholic who is now sober. In many cases, that’s the common denominator that gets our conversation started. About eight out of ten customers talk about substance abuse, which is a typical part of mental health problems.”
“Feelings are similar regardless of the diagnosis"
Another topic customers wonder about is medication. Finding the right balance for medication may take time, or the patient may think that they no longer need the medication as soon as their condition improves. They may also have an anti–medication attitude, in general.
“I share my own perspective that the medication allows me to have a normal daily life, and I feel well thanks to it. I believe that I just have a brain chemistry that needs a little reinforcement. However, you need patience in case balancing the medication takes time, like what happened in my treatment.”
Samulin does not meet only with people who have the same diagnosis.
“It doesn’t matter that we don’t have the same diagnosis. The feelings and experiences related to an illness are often very similar. Falling ill is an enormous shock that causes chaos and crisis. Your life falling apart is scary and difficult. When a person is ill, they usually feel that they don’t know what’s going to happen.”
When a person’s recovery progresses, they usually face the same challenges with life management as others, regardless of the diagnosis. Day-to-day matters are also discussed at the group meetings when a person is about to be discharged.
“While they are on the ward, people get used to a set daily schedule. They receive meals and medications at set times, there are always people around, and support is always available. Once they get back home, the person may have no one. What helped me at home was a timetable that I had prepared based on the daily schedule at the hospital. You should remember that you are not fully healthy when you are discharged; you have only received first aid. You shouldn’t demand too much of yourself early into your recovery,” Tuula Samulin says.
The expert by experience and the customer usually meet once for an individual consultation. The consultation is confidential and the content of the discussions is not logged anywhere. Samulin emphasises that an expert by experience only offers peer support, not treatment.
Rewarding and meaningful work
Tuula Samulin often mentions third-sector services, such as those provided by various organisations, to her customers.
“They offer pleasant activities and social interaction, since just staying at home doesn’t help you recover. Personally, I received significant help with recovery from Helmi mental health association where I volunteered for several years, first in the kitchen and later as an expert by experience.”
At the end of the discussion, Samulin often receives spontaneous positive feedback from her customers. They are happy to receive peer support and hope for the future from someone whose recovery journey is further along.
The work as an expert by experience at the City of Helsinki is extremely meaningful and rewarding for Tuula Samulin. In addition to meetings with customers, Samulin also trains new experts by experience, participates in the development of the expert by experience activities and psychiatric services and raises awareness of the expert by experience activities.
“When I started training to become an expert by experience, I didn’t think this could be a job for me, let alone salaried employment. But to my delight, that happened. I feel like I have a new profession and new-found confidence. I am able to do things and I can manage, and, above all, I get to help people in difficult situations through peer support. I get to bring hope in the face of uncertainty.”
Experts by experience are well suited for health and social services
There are about 200 peer instructors and experts by experience working for the City of Helsinki health and social services. Mental health and substance abuse services employ the most experts by experience. Experts by experience offer consultation hours, work as a professional’s partner in groups, participate in development projects and education sessions and work in two executive teams.
The goal with the expert by experience and peer activities is to promote well-being, inclusion and equality. The expert by experience has personal experience of an illness, disability or another difficult situation. They have also received training for the position. Most of them work on commission or via an organisation.
“Experts by experience are well suited for all health and social services. We have many skilled and diverse people from different backgrounds. Previously, experts by experience were mainly involved through their personal story, but these days, their work description is much broader,” says Raisa Saraniemi, special planning officer for inclusion.
Experts by experience work alongside the hired personnel and are not intended to replace professionals.
“Based on the feedback we have received, experts by experience can benefit both the customers and the staff. Research evidence has also been gathered on these benefits. Peer work has been studied for a longer time, and it is proven to be a very impactful part of customer work and helpful for service development. It is clear that customers must be at the centre of development,” says Special Planning Officer Joonas Munck.
Munck and Saraniemi educate professionals on the special qualities of expertise by experience. They also help professionals identify opportunities for using an expert by experience.
Peer instructors and experts by experience get involved in the City’s operations through various channels. They may contact the City personally, or the City may look for suitable people via organisations. Two years ago, the City sought experts by experience for 15 positions and received over a hundred applications. Approximately 50 of the applicants have received various work opportunities from the City since then. The City aims to distribute tasks among as many applicants as possible so that as many people as possible can be involved. According to Munck and Saraniemi, many experts by experience say that the work also supports the expert’s own recovery.
Munck and Saraniemi are involved in the shared coordination group of the Social Services, Health Care and Rescue Services Division. One of the group’s objectives is to develop the structures of the expert by experience activities so that the knowledge of the experts by experience is as easily accessible as possible.
Text and photos: Jaana Ahlblad