Finding a way out of paranoia

The first self help group for people with extreme paranoia has been operating successfully for eight months in Sheffield. Adam James reports.
(A shortened version of this article appeared in the Guardian)

December 19, 2003

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Chris Molloy used to believe his wife was poisoning him with heroin and cocaine. He was convinced she and his friends were spiking his cigarettes, drink and food with the drugs.

His fears became all-pervasive to the extent that Molloy became locked in a conspiratorial world in which he feared church leaders were secret drug barons, and cameras in his room monitored his every move.

"I thought everything in the world was connected to the world of drugs," recalls Molloy. "I became very withdrawn and lost a lot of weight."

"I thought my whole family was involved, and it got to the point that I had to leave my wife and two children."

When Molloy went to see a psychiatrist, he was told he was suffering from psychotic, delusional thoughts and depression. Molloy was prescribed medication, and visits from a community psychiatric nurse were arranged.

This was all three years ago when Molloy was 32. His confidence shattered, Molloy, who still experiences bouts of paranoia, has been in and out of work ever since.

But eight months ago Molloy fell back on his limited social work experience and decided to establish a community-based self-help group for people, like him, experiencing extreme paranoia.

The creation of the Sheffield paranoia self-help and support group, the first service of its kind in the UK, was a markedly audacious initiative. Moreover, it is run not by clinicians, but by Molloy and former psychiatric patient Peter Bullimore, the unpaid chair of voluntary mental health group, the Sheffield Hearing Voices group.

The pair have been helping 16 people meet every week in a former school building in Hillsborough, Sheffield. The group members, most of whom have psychiatric diagnoses such as schizophrenia, share the paranoias, conspiracy theories and bizarre beliefs which have such a stranglehold on their lives.

Themes vary. One group member fears police constantly survey him; another believes someone enters his house and subtly moves household items; one man suspects a Freddy Krueger-like monster lurks in the back of a van outside his house.

The group's humble, but vital, service is that it offers space in which members can talk freely and openly about their beliefs without fear of ridicule or of being pathologised.

"Some of us have been talking about how we came to be paranoid, the stressors and vulnerabilities in our life" explains Molloy. "We also might do a bit of reality checking, to test our beliefs."

"But the most important thing is that the group creates a safe place for people to talk about their paranoia. If people do not have such a safe place, they become isolated and the paranoia can get worse."

Bullimore, 45, had himself been diagnosed with schizophrenia in 1992. His paranoia revolved around fears he was being spied on. He would stop cars he thought were following him and quiz their drivers.

"In traditional psychiatric settings such beliefs are not talked openly about and are put down as an illness," asserts Bullimore.

"I ended up on 25 tablets of medication a day. As I see it I was drugged just to shut me up."

For traditional psychiatry, prolonged paranoia or bizarre beliefs are "delusions", a classic symptom of schizophrenia. First line of treatment is medication. The detailed content of such delusions are usually judged to be of little medical interest.

Moreover, a study in the British Medical Journal last year revealed psychiatrists, faced with patients talking about their delusions during consultations, would feel embarrassed, and would hesitate, or even avoid, responding to questions.

Moreover, the average time psychiatrists spent discussing such psychotic symptoms with patients was just 67 seconds.

The study concluded that psychiatrists' "reluctance and discomfort" when talking about bizarre beliefs was "apparent".

Study co-author Tim Burns, professor of community psychiatry at Barts and the London School of Medicine, believes such discomfort was less to do with psychiatrists' interpersonal ineptitudes, but because they preferred to spend time precious consultation time discussing issues they felt were more pressing - such as housing and social relationships. Psychiatrists were therefore eager to steer conversations away from a patient's delusions, argues Burns.

He adds: "While psychiatrists of my generation were trained not to talk about the content of delusions as it was believed to make them worse, psychiatrists are nowadays more sceptical of such a view."

However, Phil Thomas, consultant psychiatrist with Bradford's assertive outreach team, is convinced the study flags up a fundamental flaw in his profession's practice - that discussing the content of patients' delusions is judged to be of little therapeutic importance.

"Psychiatrists by and large do not respect such experiences," says Thomas. "Yet, so often a person's experiences are related to all the other factors [such as housing and personal relationships] which is why it is imperative that we explore them."

The Sheffield group, which now takes referrals from psychiatrists and GPs, has won the interest and support of Thomas and other mental health professionals challenging traditional psychiatric opinion. Some were among the launch last month of the Paranoia Network which aims to disseminate the progress of the group around the country.

Moreover, in July next year Manchester Metropolitan University will be inviting people effected by paranoia to speak in the first International Conference on Paranoia.

Some professionals and service users already hope the network will mirror the success of the Hearing Voices Network (HVN) which, over the last 15 years, has seen the launch of 150 self help groups for people who hear voices.

The HVN encourages people, again often diagnosed with schizophrenia, to "accept" their voices as real and meaningful and to find ways of coping and living with them.

Clinical psychologist Rufus May, also of the Bradford assertive outreach team, hopes the Paranoia Network, like the HVN, will ultimately encourage professionals to re-examine how they work with people with delusions.

May was himself diagnosed with schizophrenia when aged 18 and he entertained theories he was a spy and the television broadcasted messages to him. His psychiatrists never talked through with him his troubling beliefs.

"I remember a friend once saying to me you are not mad, just a bit paranoid," jokes May, a passionate supporter of service-user led initiatives.

"So I think it is important to have safe places like that offered by the paranoia group. They start to influence services and ultimately have an impact on the culture of services. That, I think, is a good thing."

The Paranoia Network is on 0114 271 8210
For International Paranoia Conference details go to www.asylumonline.net/paranoianetwork.htm

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Support...after 20 years of misery

From: Michelle Prenderville, volunteer
Date: January 9, 2008

I am so relieved to hear finally at long, long last that I and others will get effective support from peer support in this enduring state that I have suffered endlessly for some 20 years or so.

I can only tell you, Peter and Chris, having met you both that I can say, with hand on my heart, that seeing there's a way out of the delusional, horrible fog that has debilatated my working and social life for so, so long.

On seeing the news of this network reminds me of a Christy Moore song called 'You Couldn't Have Called At A Better Time'. I've suffered unrelentlessly and now, finally, after typing in a search with the words 'paranoia network, selfhelp', I came across the very dose that I needed more than ever.

I will pass on details of the site to all those that suffer from the raw scourge of paranoia and those in deep despair tormented from delusions. Like Chris and Peter I have felt for so long the anguish and day-and-night torment of beliefs that I persistently, in major and minor bouts, derailed. Sadly, I have driven the kindest and patient and loving people into a state of 'what the name of god do we do with Michelle now'?

Keep up all the solid work you're doing.

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Robbing delusions of their power

From: Albert Kashner, USA
Date: July 31, 2008

I've been diagnosed with paranoid schizophrenia for 30 years. For most of that time, I''ve accepted the prevailing wisdom that my delusions were meaningless symptoms of disease.

I recently experimented with considering my delusions real and meaningful by writing them down during my most recent psychotic episode. I find I have been able to put them in a larger perspective by reading them and reflecting on them. I feel this has robbed them of some of their power to intimidate and control me.

It seems that talking about one's paranoid beliefs in a supportive context like that provided by The Paranoid Network would provide similar benefits.

I would love to see something like this available in the USA.

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Will I ever let go of my persecutory belief?

From: Jacob Houghton, unemployed, England, UK
Date: May 8, 2009

I have been diagnosed with paranoid schizophrenia just recently by a consultant psychiatrist. The consultant who was overseeing me before he diagnosed me with a paranoid personality disorder.

My psychotic episode in the summer of 2006 led me to believe I was being investigated by the police in conjunction with MI5 or some kind of agency that involved a massive operation to survey me and push me over to the edge and kill myself.

I believed my flat was booby-trapped with cameras and sound devices and that I was constantly being followed by investigators. This episode lasted about a month and was very distressing and frightening. My psychiatric care team offered no support for me and I feel thoroughly let down by them.

The episode began to wear off after two months or so but my delusional belief continued as I stayed in my flat frightened that I was always being watched.

This tension drove me to jump out of my flat balcony of a height of thirty feet. However, I survived and was taken to hospital with a broken leg and arm.

Three years on I have moved out of that flat and into the countryside where I am a lot happier. Yet I still hold the same delusional beliefs as a paranoid fantasy that I toy with in my mind and I\'m concerned that I will never 'let go' of my persecutory belief.

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