In this guest blog from the Scottish Recovery Network, freelance health writer Jennifer Trueland explores how the response to people's experiences of hearing voices is changing:
Sixteen years ago, when he was at university, Gavin Webster began to hear voices. At first, he says, they were “demonic”, but then other voices started to build him up and tell him what a fine chap he was.
In all, the Dundee man says, he has had to cope with around 10 voices of varying tone, none of them welcome.
“The demonic voices were telling me to kill myself. Voice hearers are far more likely to hurt themselves than other people and the percentage of voices hearers that are violent is much less that the percentage of the general population that is violent,” he says. “And then there were ‘nice’ voices, trying to boost my ego. Now I’ve got a faith, and that’s important to me, and all these voices were doing were giving me delusions of grandeur. I chose to ignore all the voices – that was my decision.”
Gavin, now 46, and chair of the Dundee Hearing Voices Network, tried to get medical help. “I went to services, but they just offered me pills. So my mum [Pat Webster] set up the network, so that we could help each other. “I don’t hear the voices any more – I’ve recovered. So that’s my message – that there’s hope for recovery.”
In 2014, the hearing voices landscape is very different to how it looked when Gavin first tried – and failed – to get appropriate support. Today, most big cities (and some smaller areas) will have their own hearing voices network, some voluntary, some associated with statutory services.
But although tremendous progress has been made in the last two decades, many campaigners believe there is still a long way to go. “There’s a fine balance,” says Wendy McAuslan, development co-ordinator with VOX (Voices Of eXperience), a national mental health user-led organisation. On the one hand, she says, it’s important to recognise that people’s experiences of voices can be different, and can change over time – some may hate the voices and find them debilitating and traumatic; others may welcome them, or find them a comfort. “What’s really important is listening to people, understanding how they feel. It’s not just about clinical symptoms; it’s about people’s emotional experience.”
Hard facts about hearing voices
So what are the hard facts about hearing voices? It’s difficult to say. The International Hearing Voices Network suggests that 4-10% of us hear voices, and that 70-90% of these do so after experiencing a traumatic event. The organisation quotes studies suggesting that while one in three people who hear voices become psychiatric patients, two in three don’t.
Traditionally, voice hearing has been associated with serious mental illness, but this has been gradually changing. Last year, for example, the diagnostic criteria for schizophrenia were changed, so that no-one can now be diagnosed with the condition on the basis of hearing voices alone.
There is also, says Wendy, growing recognition that hearing voices is a continuum – at the most basic, it can be like getting a song stuck in your head; in other cases it can involve distressing voices which have a severe impact on your life.
Consider other approaches
Professor Stephen Lawrie, a consultant psychiatrist in Edinburgh, and head of the division of psychiatry at Edinburgh University, believes there has been a huge change. "Users and carers have become much more active and that’s a good thing,” he says. Generally, too, he said, there has been a movement in favour of taking non-medication approaches where possible for hearing voices. “But this is a complex and controversial issue,” he cautions.
“If you look at the facts, you’ll see that taking anti-psychotic drugs [if you have schizophrenia] will have an impact, and if people respond well to treatment then they will have benefits in the short and medium term.”
Karen Taylor is a registered mental health nurse and director of the internationally renowned Working to Recovery organisation. She believes that while medication works for some, it’s important to consider other approaches.
Among other things, she is accomplished in training people to use “dialoguing” or talking to the voices to help regain control. Growing international acceptance of this approach, she adds, is a marker of how much things have changed.
“Twenty years ago if someone [hearing voices] approached services, then the first thought would be medication. Now there’s a much more holistic approach to what’s going on, although some teams are still very medically oriented. Now you are more likely to be introduced to hearing voices groups straight away.”
Media portrayal doesn't help
Julie McPherson is a facilitator of the Hearing Voices Support Group at The Hive, an activity centre within the grounds of the Royal Edinburgh Hospital. She is co-author of a booklet on hearing voices, aimed at voice-hearers, families, and others with an interest.
“It’s been well-received,” she explains. “Patients like it, and family members have told us that it really gives them an insight into what’s going on. It can be worrying for families: some people – and the media portrayal doesn’t help – think that hearing voices means you want to kill people, which simply isn’t true. So this booklet helps provide reassurance as well as information.”
Hospital professionals have also found it useful, she says, adding that attitudes towards the hearing voices support group had changed radically since it was formed some 16 years ago. “A lot of psychiatrists were against it, because they felt we were reinforcing people’s delusions,” she says. “Now there is a greater recognition that it’s just another piece of the puzzle, and they refer people to us because they know that we help.”
Some people coming to the group find that their voices diminish, or disappear completely, she adds. “For some, it’s more about learning to cope. I hate the phrase, but people really need a toolkit so that they can cope.”
The message that shines through in the booklet (which is available on the SAMH website) is that the problem is not that people hear voices, it’s how they cope – and that acceptance of the voices is a key first step, as is being respectful of people’s own feelings about the voices.
Stephen Lawrie – who is also director of the Scottish Mental Health Research Network – says there are big battles still to be fought, particularly around stigma and public attitudes. “We’re trying to take a lead in engaging users and carers to help drive research,” he says. “We should be working together.”
The Scottish Recovery Network (SRN) was formally launched in 2004 as an initiative designed to raise awareness of recovery from mental health problems - for more information visit www.scottishrecovery.net/.