Hayley Martin spent three years sleeping in her car because she was afraid her house might burn down. Checking everything was turned off took so long, she never got to bed.
The rituals she put herself through were taking up to 19 hours a day and she was forced to give up work because there was never enough time to complete them. Sleeping in the car allowed her to monitor the house and reduced the number of checks.
She is one of the estimated 750,000 people suffering from obsessive compulsive disorder (OCD), whose plight was highlighted yesterday by the arrest of the parents of 40-year-old Samantha Hancox, who died after reportedly spending up to 20 hours a day in the shower.
Ken and Marion Hancox, aged 76 and 77, were questioned for seven hours by police after dialling 999 when they discovered their daughter dead in an armchair at the family home. She had hardly left the house in 18 years because of her fear of being contaminated with germs, despite repeated visits by psychiatrists and occasional admissions to hospital. A post mortem showed she died of dehydration and a skin infection and the couple are on bail while investigations continue.
Campaigners yesterday condemned the police response. Ashley Fulwood, chief executive of OCD UK, said: "It is nothing short of a disgrace. Samantha Hancox had been in the mental health system – it was their failing, not the parents."
Joel Rose, director of OCD Action, said: "We receive a huge number of calls from exasperated carers who are banging their heads against the wall trying to get specialist help. If the condition is not treated early it can develop into a desperate disorder."
Between 1 and 2 per cent of the population suffer from OCD severe enough to require medical intervention. Awareness has grown as more people have recognised minor symptoms in themselves. US actress Megan Fox, star of Transformers, confessed to a horror of restaurant cutlery – "putting my mouth where a million other mouths have been – euchh," she said. David Beckham is reported to line up the drinks cans in the fridge symmetrically and to insist on having an even number. "People say they are 'a bit OCD' about washing or cleaning the kitchen surfaces. They have not got OCD – that sort of behaviour is more like a celebrity quirky illness," Mr Fulwood said.
Psychiatrists distinguish between obsessions and compulsions, though OCD sufferers typically have both. An obsession is an unwanted intrusive thought or image which repeatedly enters the sufferer's mind. Experience of intrusive thoughts such as the urge to push someone under a train or the fear that the cooker has been left on, is almost universal but people with OCD tend to think they are dangerous or immoral and that they can protect themselves or others from them. The commonest compulsions are checking (eg that gas taps have been turned off), cleaning and washing, and repeating acts or words and phrases.
Psychiatrists classify OCD as an anxiety disorder and it is typically treated with cognitive behaviour therapy and medication. The Government announced an extra £400m last week as part of its mental health strategy to boost provision of talking therapies. However it takes an average of 12 years from the onset of symptoms to diagnosis of OCD because sufferers tend to hide their illness. "People think they are going mad, they don't know what's wrong and they think they will get locked up. It is important to get treatment early because the behaviour can solidify. But there is still too little provision," said Mr Rose.
OCD Action helpline: 0845 390 6232
'I had feelings of doom'
Hayley Martin, 40
"It started when I was six years old. I remember sneaking round the house after my parents had gone to bed checking it was not going to catch fire. It escalated through my teens – I felt I needed to protect my family. Even in my 20s, if my parents came home 10 minutes late, I would worry they had been in an accident.
It got better after I married at 21 and left home but in my mid-20s it got really bad again. I had intrusive thoughts and a feeling of doom. It would take me two or three hours to post a letter because I would worry I had said really inappropriate things and would get arrested.
I had to give up my job – I was an assessor in a children's home for people with autism – because the checks I had to do were taking 19 hours a day. For three years I slept in the car. It took so long to get to bed because of the safety checks that it was easier and it saved time. It goes crazily out of proportion and takes over your life.
I am still pretty bad but I am better than I was two years ago. One thing that has really helped is running. I am training for the Edinburgh marathon. When you are running you can't think about other things. It's calming."
ocd: THE FACTS
* The commonest obsession is fear of dirt or germs, affecting 38 per cent of sufferers
* The commonest compulsion is checking, for example gas is turned off, electrical appliances unplugged, affecting29 per cent
* Other obssessions/compulsions include excessive concern with order or symmetry, worry over physical symptoms, repeated cleaning of surfaces or washing, and hoarding objects.
* Sufferers include the footballer David Beckham, who is said to insist that drink cans in the fridge are lined up, and the actress Megan Fox, who cannot use public toilets or restaurant cutlery for fear of being contaminated. "This is a sickness; I have an illness," she told a US magazine.
* Delay from the onset of symptoms to diagnosis averages 12 years. Sufferers often fail to acknowledge they are ill or try to hide their symptoms
* Treatment is with Cognitive Behaviour Therapy which may be supplemented with medication – usually SSRIs, drugs prescribed for depression.
* OCD affects 1-2 per cent of the population – an estimated 750,000 people. When their carers and families are included the condition affects 1-2 million people in the UK.