Doctors must take side-effects of drug-based treatment seriously, writes Alison Healy
The world is a frightening place for someone with schizophrenia. You become delusional. Your mind convinces you that certain things are happening in spite of obvious proof to the contrary. You might hear voices, sometimes cruel and mocking. You become paranoid and mistrustful of everyone around you.
Then you arrive into hospital to be rescued. In an ideal world, a package of care services would be provided to ease you back to recovery and normality. But this seldom happens, according to the findings of a survey to be published today.
Entitled Talking About Choice, the study highlights an emphasis on medication by the health services and a lack of consultation with patients about their care. More than half of those surveyed said they were given no choice in their treatment.
This is particularly hard for people who may already feel they have lost control of their lives, according to John Saunders, director of Schizophrenia Ireland.
"They often find themselves in severe isolation. They are either afraid to talk about what's going on with them or they find people don't understand them. People ridicule it or dismiss it," he says.
About one in 100 people is likely to experience psychosis or schizophrenia during his or her lifetime. The increase in population indicated in last week's preliminary Census results suggests that about 42,000 people in this State are affected by the illness.
About half of those affected hear voices and 30 per cent have some form of paranoia. Medication is still the main tool of treatment, according to Saunders.
"There's still an emphasis on a medically-based treatment regime. There's an absence of other interventions, psychology, counselling, social work." He also says doctors don't seem to understand how medication disturbs their patients' lives.
"The medication can have quite an affect on their lives - loss of concentration, weight gain etc. These are very serious factors in one's lifestyle but the medical profession almost dismisses them as side-effects and not important," he says.
"Sometimes their ability to engage in ordinary social activity, hobbies, pastimes, sports, work or driving is greatly compromised and they often complain about this but it's seen by the people who prescribe the medication as just a side-effect that you need to put up with."
The survey found that half of patients stop taking their medication at some stage because of the side-effects, but Saunders says this is a dangerous approach and could lead to a relapse. "There should be a joint decision and assessment by the patient and the doctor to reduce medication over a graduated period of time," he says. "But many doctors just take the view that it is easier to get someone to stay on the medication."
According to Saunders, medication need not be a lifelong treatment for some people. "If there was more of a partnership approach between the patient and the doctor to work towards that, it would be far healthier."
There is no single cause of schizophrenia. It is thought to be a combination of hereditary and environmental factors. Similarly, there is no single factor that will make the illness disappear.
"Like diabetes, a cure isn't possible. What is possible is that people can regain a quality of life that they had before," says Saunders. "They can learn to manage the condition, to identify the stress factors in their own lives. They can change their lifestyle and career to suit their temperament and they can maximise their quality of life."
Medication alone won't lead to that recovery, he says. A programme of care should involve psychological help, counselling, peer support, education and help from networks such as voluntary organisations.
"All of those things are absent," he says. "When you get into the system nothing flows because there's nothing else there."
Today's launch of the Talking About Choice research marks Lucia Week - the annual week organised by Schizophrenia Ireland to raise awareness of the illness. It is named after James Joyce's daughter Lucia, who had schizophrenia. For more information, see www.sirl.ie