The lived experience of schizophrenia and bipolar disorder (formerly manic depression) sits alongside clinical expertise in a mental health programme launched last month. The Eolas programme offers two eight- week peer- and clinician-led mental health programmes focused on information about mental health difficulties, learning how the mental health services work and coping strategies to enable recovery.
The programme developers say it is the first mental health programme that puts people with mental health difficulties as equal partners with clinicians in the design, delivery and evaluation of an information and support programme.
Agnes Higgins, professor of mental health at the school of nursing and midwifery at Trinity College Dublin says the programme has filled a gap in the services as other programmes were either peer-led support groups or clinician-led programmes. “People were not getting enough information about diagnosis, medication, warning signs and coping strategies for physical and mental health,” she says. The programme also gives sufferers and family members a chance to talk honestly in a confidential setting without fear of stigma in the presence of peers and clinicians. “Eolas allows people to have conversations they can’t have at home or anywhere else. It’s a forum for sharing and getting information,” she says.
A video on the programme website, eolas.ie, testifies to the impact of the programme on those with mental health problems, their family members and clinicians. One mother says: “You try to fix the individual and make it go away but that breaks everyone’s heart. You learn to live with the mental illness that is part of the person who you love. I needed to separate my health from my son’s health and if he was having a bad day it didn’t mean I had to have a bad day too.”
Other family members have said that the programme decreased their sense of isolation, shame and loneliness, allowing them to develop friendships and supports after the programme ended.
A mental health nurse using the programme says. “By sitting in the group, I learned the importance of listening to people about their day-to-day challenges and how they coped with them.”
Finn van Gelderen has been using the mental health services for 20 years. He partook in the Eolas programme and also trained to become a cofacilitator to deliver the programme to people recently diagnosed with schizophrenia or bipolar disorder.
“There has been nothing like this before. The mental health services are a lot more open and patient-focused now compared with when I was first hospitalised with a psychotic episode more than 20 years ago.”
Van Gelderen is keen to point out that terms such as mental health difficulties or problems are preferable to mental illness, as stigma still exists around the term mental illness.
“My mental health difficulties are part of who I am, not what I am. Some parts of the media tend to use the term psychosis [a severe mental disorder in which thoughts and emotions are so impaired that contact with external reality is lost] and psychopath [a person suffering from chronic mental disorder with abnormal or violent social behaviour] interchangeably, which isn’t helpful to people with schizophrenia.” Organisations such as Shine have long campaigned to dissolve the public perception that violence is always concurrent with mental health problems (see recover.ie).
Initiated in Co Kildare and west Co Wicklow, the Eolas programme is now being offered in mental health services in the midlands and south Leinster with the hope that it will be developed throughout the country. Dr Pat Gibbons, the consultant psychiatrist in Kildare/West Wicklow Mental Health Services, says: “Many people attending the services for a considerable time regret Eolas was not available at the beginning of their journey to give them a road map of the services and their own mental health difficulties.
“Our next challenge is to roll it out countrywide and see it embedded in the mental health services as part of the standard package of care within a year following diagnosis of schizophrenia or bipolar disorder.”
The programme, initially funded by Genio, is now funded by the Health Service Executive.
Gibbons adds that the programme incorporates the psychiatric model with the recovery model. “It changes the nature of the relationship between the clinical team, service user and family members so that everyone can ask questions and negotiate and participate in the decision-making.”
The Eolas programme is finally an example of what the 2006 Vision for Change mental health policy document deemed necessary for the move from an institutional model of care to a community-based mental health service. This document stresses the importance of a recovery model which had people with mental health problems at the heart of the services.
Launching the programme at Trinity College school of nursing, Kathleen Lynch, Minster of State with responsibility for mental health, said: “We spent enormous amounts of money on a psychiatric service. Now we hope to deliver a mental health, wellness and fitness service and we are making significant progress.
“We have come a long way and we have a long way to go. When the population decides its time to change, it’s unstoppable. Don’t let the condition define the person. It’s about the journey to recovery.”