Most sufferers 'not given choice'

Mental health: More than half of people with schizophrenia are given no choice in their treatment or medication, according to research findings to be published today.

The Talking About Choice survey of people with schizophrenia and other severe mental illnesses found that 52 per cent were given no choice in their overall treatment, while 53 per cent were given no choice in relation to medication.

Drugs are the main form of treatment for schizophrenia, which is characterised by disturbances in a person's thoughts and behaviour. However, this medication can have negative side effects, including weight gain, loss of energy and concentration, tremors and muscle spasms.

The vast majority of those surveyed (85.5 per cent) said that they had experienced side effects at some stage. Loss of energy was the most common complaint, while sexual side effects were described as the most severe.

The Talking About Choice survey was carried out for Schizophrenia Ireland by UCD's Centre of Disability Studies and is being launched today to mark Lucia Week, which focuses on raising awareness about the illness.

It found that about one-half of schizophrenia sufferers tried to stop their medication or reduce it at some point. More than one in five did this because of the side effects, while others said they thought they were better or they wanted to regain control of their lives.

Coming off medication had a negative outcome for about two-thirds of people who tried it, yet more than 80 per cent of this group said that they got no help from their doctors in doing so.

"Here again we have evidence of a lack of partnership in the treatment process," the report states. "The patient is not telling the doctor what is going on, but this may be in part due to the fact that neither is the doctor always telling the patient."

It described as "alarming" and "unacceptable" the number of people who said medication issues were never discussed with them.

Despite these problems, nearly three-quarters of people surveyed said they had a positive relationship with the healthcare worker they dealt with most. Just 6.6 per cent said it was a negative relationship.

Alternative medications were not discussed with almost half of patients, according to the survey.

Relaxation therapy was the most frequently offered alternative treatment, followed by art or music therapy, group therapy and counselling. The demand for group therapy was clear, with almost 85 per cent taking it up when offered. Peer group support and exercise were also deemed to be very helpful.

The report recommends that patients have better access to all professionals working in the mental health area, including counsellors, occupational therapists and social workers.

It calls for an agreed definition of what "recovery" means for each patient, so that patients know what they are aiming for.

The report calls for more appropriate language to reflect the experiences of patients. It says that consideration should be given to changing the phrase "side effects" when talking about medication as the effects of medication were central to patients' lives, not a side issue.

It also seeks more educational opportunities for people with schizophrenia.

Schizophrenia Ireland runs

an information helpline at

1890 621631.