FOR much of her childhood, Bethany Decourcy heard voices.
They were in her head, she recalls; sometimes they were kind, sometimes not.
She was a child, she thought this was normal, she explains: “I’ve been hearing voices since primary school, but I took them for granted.
“Sometimes they were nice, but sometimes they said kind of mean things. They made me very self-conscious.” By the time Bethany was in fifth year of second-level school, however, things had escalated.
“I was struggling at school. I had learning difficulties and found it difficult to concentrate.
“The teacher would speak to me, and my mind could go blank. I wouldn’t register what she was saying. I’d see her mouth moving. I’d see her making gestures with her hands, but I wouldn’t be able to hear. But I haven’t got hearing problems — my hearing was grand!” That was the year her parents separated, the 19-year-old recalls.
“I found it very difficult. I kept blaming myself. I looked okay on the outside, but inside things were going downhill.”
The voices got even worse following the separation: “They were very loud, very negative; they kept telling me that my parents’ separation was my fault.” About half-way through fifth-year, Bethany self-harmed. She told her mother and was brought to the GP, who referred her to the Open Dialogue Programme in Bantry, an innovative patient-orientated mental health programme which originated in Finland and has been running in the town for several years.
Open Dialogue, which is featured in an RTÉ2 documentary on Schizophrenia later this month, was the first programme of its type in Ireland when it introduced to Bantry as a pilot scheme in 2012.
The Finnish approach differs markedly from traditional ways of treating mental health problems — it allows patients’ families to participate in sessions, insists on continuity of care by the same multi-disciplinary team and prioritises the involvement of patients in all meetings and discussions about their own cases as well as in the development of their treatment plan. It also encourages patients to talk about any hallucinations they’re experiencing.
Open Dialogue has proved so beneficial to patients with psychosis that there is now a weekly OD clinic in Bantry.
A team in Kerry is about to commence training in the OD system, following which a pilot programme will be launched in the region. Meanwhile, an Open Dialogue pilot programme has also just begun in Cork city’s South Lee Adult Mental Health services.
Fear and stigma swirls around schizophrenia, says Aoife Kavanagh, producer of the upcoming RTÉ 2 television documentary Schizophrenia; The Voices in My Head which focuses on the experience of six young people, one of them Bethany, who live with the condition.
“There’s still a lot of stigma and embarrassment about this condition; a lot of fear. You hear about schizophrenia when there’s an horrific murder, but the actual condition is a different story - the violence element is just not there in 99% of cases.
“People with the condition are more likely to harm themselves than anyone else,” she says.
Schizophrenia tends to manifest in people in their late teens or early twenties, and Kavanagh he wanted to see if they’d be willing to talk about their experience of the condition, and whether they lived with stigma because of it.
Among those featuring in the hour-long documentary, which is directed by Kim Bartley, is artist Michelle Dalton (28), who lives in Cork city, as well as one person with schizophrenia from Waterford, one from Tipperary and two from Wexford.
All speak openly about how the condition has impacted on their lives in terms of hallucinations, thoughts of suicide and disrupted education. Bethany, the only interviewee on an OD programme, was filmed by the crew with her clinical team, during an Open Dialogue session.
“The focus of Open Dialogue is on psychosis, which is a feature of schizophrenia among other conditions,” says Kavanagh.
I think the approach seems to be really working for people and you can see it would be very useful if it was expanded nationwide.” Bethany began her Open Dialogue sessions in the summer of 2016.
“It helped! I was able to bring Mum with me and that was very reassuring. We spoke about what had happened and about my parents separation and school and the past. They were very good at listening and I felt very comfortable speaking to them - I never felt judged.
“At first I was very scared about being judged for self-harming, and for talking about hearing voices- I didn’t want them to say I was crazy - but they were very reassuring and very helpful.
“Everything that was said, was said in front of me so I got to hear their opinions.
“Whatever was written in the book we got to read it and sign it, and you could add stuff in or take stuff out.” Bethany is currently almost at the the end of her Open Dialogue programme — her last session takes place this month: “I’m much better than before. The voices are very mellow now and they’re not as controlling.
“I can control them and there might be the odd mean comment — I can hear it but it’s not very loud or abusive,” observes the teenager, who now plans to study art at third level, and then sign up for an apprenticeship in tattooing.
Bethany is one of about 134 service-users and their families who have participated in Open Dialogue since the programme began running as a weekly mental health clinic in the town in 2015.
The Bantry programme is now linked to OD projects in the UK, Italy, New York and Australia, explains Dr Iseult Twamley, Open Dialogue Clinical Lead and Senior Clinical Psychologist with the HSE, who has been involved with the OD programme since it started in Bantry with a pilot programme in 2012.
“Open Dialogue is a way of working in the area of mental health that builds very good relations between the clinical team and the patient and the patient’s family.
“We do this by being consistent, so that it’s the same people on the team all the way through. In traditional mental health programmes, that’s not always guaranteed.
“A consistency means people really have a relationship and know you. Also it’s very transparent so we don’t talk about people when they’re not with us.
“A patient’s case is discussed in the presence of the patient and a family member if they wish that. The objective is ‘Nothing About Me Without Me.’ “It’s a very collaborative approach in which notes and letters concerning the patient are written in collaboration with them, and there’s a very big emphasis on understanding a person’s story and their life - who they are and how they came to be in this place, and what strengths they have.
“Because we’re very interested in everything that happens to the person and their lives, when a person says they are hearing voices or having other unusual experience or seeing things, other people don’t, we take the approach that we’re interested in this. There’s something important and therapeutic about understanding what is happening.” The very traditional approach, she explains, would have been to simply treat the voices as a symptom, which means that sometimes patients were encouraged not to talk about the voices.
“OD is really good for getting people back into their lives, moving on with work or education; and moving forward.” OD has far the best recovery rate with psychosis in terms of getting people back into their lives,” she says adding that in the UK, Open Dialogue is now the focus of a large pilot programme.
Here, she says, HSE management has been very supportive: “ Under the HSE service plan we will develop the first OD training in Ireland, starting next year in Cork and Kerry. We’ve also have had approaches from other teams internationally so it’s a case of seeing how that plays out.
“The dream would be that the regional training would become a national training project - that’s down the line but it may not be far down the line!”
- For those who wish to comment on the programme, the OD team in Bantry is currently running an online survey to gather opinions on Open Dialogue and whether it should be implemented in Ireland. Visit https://goo.gl/forms/haWZEE2cekn2SHHG3
- Schizophrenia; The Voices in My Head, is due to be broadcast on RTÉ 2 at 10pm on September 19