Psychiatrists should “pay attention” to criticisms leveled at them from more than 30 people who hear, or have heard voices, and whose experiences are documented on a new website, says the head of a leading mental health organisation.
The people, diagnosed with schizophrenia or bi-polar disorder, have described on video their experience of psychosis and treatment at www.healthtalkonline.org
Professor Tim Kendall, director of the National Collaborating Centre for Mental Health which produces mental health guidance for the National Institute for Health and Clinical Excellence (NICE) said: “This website is not an ideological mouthpiece but an evidence-based scientific resource. If that includes criticism of what we as psychiatrists are doing, then it’s important that we listen carefully.”
The website is produced by the DIPEx charity, and is part-funded by the Department of Health.
NICE is to use the video testimonies for its service user experience guidance, to be published later this year.
Contributors discuss their experiences of:
- trauma, including bullying and sexual and physical abuse in childhood
- hearing voices, seeing things and having unusual beliefs – with examples of how aspects of how life from religion to technology feature in these types of beliefs
- taking medication, sometimes under duress, that often has unpleasant side effects such as substantial weight gain
- hospital and community services, including being detained under the Mental Health Act
- alcohol and drug abuse
- failing to be taken seriously by health professionals
- marginalised and stigmatised by their diagnosis
- prison and police
Prof Kendall said: “Taking patients’ experience into account is now recognised as a key part of improving the quality of healthcare – and this is especially the case with severe mental illness where the experience of psychosis has such an impact on so many aspects of people’s lives.”
Dr Laura Griffith, senior researcher at the Health Experiences Research Group at Oxford University and who carried out the interviews, said the video testimonies will “humanise experiences that are too often dehumanised’ as well as support planning for improving services.
“At a time when psychiatrists, psychologists and others in the health service are looking at developing ‘outcome measures’ to assess whether mental health services have been successful, people with direct experience of psychosis should play a key role in deciding what these outcomes should look like.” she said.
Peter Bullimore, of the Hearing Voices Network charity, and who is featured on the website said the testimonies will “help break down the stigma of having psychotic experiences”
“It will also get across the positive view that people can recover from the experience of trauma to which psychosis is so often a response,” he said.