The man who wouldn't eat

THE first thing Roger and Tricia Moir did when they got home on the evening of December 9, 1999 was ring York hospital to check on their son Jonathan. They had left him at the hospital shortly before, at about 9.30pm. Emaciated after months of struggling with an eating disorder caused by the obsessive belief that food was harming him, and weighing just five and a half stone, he had been put on a feeding tube to try and build up his strength.

Even so, he was asking the doctor to make sure nurses didn't set the tube to feed him too quickly. It was a sign of the severity of his obsessive compulsive disorder. There were no signs of an immediate crisis, however. Exhausted, Mr and Mrs Moir had decided to go home.

Tricia rang the hospital as soon as she walked through the door. "They said he was fine," she says, struggling to control the emotion in her voice. "But, ten minutes later they rang me back and said he had deteriorated." The Moirs rushed back to the hospital. Jonathan, weakened by starvation, had suffered a heart attack. Doctors were trying to resuscitate him, but without success. "He died that night," says Tricia.

That was more than four long, dark years ago, but you sense Jonathan's parents are still numbed by what happened. "It only seemed like a short while since we had been watching him walk through the doors of Manchester University, and all of a sudden this had happened," says Roger.

Jonathan had seemed to have the world at his feet. An athletic young man and keen tennis player, he had begun a degree in law and accounting at Manchester University. He was, Tricia says proudly, in the top ten in his class. "Everybody says their son is special," says Roger, "but he certainly was. He was a superb son, loving, caring, kind-hearted."

When he came home in 1996 after his first year at university he complained of feeling ill. He had been taking a drug for acne, which his parents believe affected him. He developed stomach pains and irritable bowel syndrome, became depressed and began experimenting with his diet to make himself feel better. Gradually, it was to develop into an obsession. "He wanted to eat the right food that would make him feel better," says Roger.

Jonathan returned to university at the start of his second year. But, after a couple of weeks, still depressed and convinced he was unwell, he came home. He began to take counselling and for a year or so seemed to be reasonably OK, playing tennis and leading a fairly active life. Gradually it became clear that things weren't improving.

At the beginning of 1998, his obsession about food began to get worse. He bought himself a book about the liver cleansing diet, and began to follow it obsessively, eating less and less. "He was trying to clear himself out," says Tricia. "But eventually he didn't eat anything."

Even so, when he was diagnosed with severe obsessive compulsive disorder (OCD) in September 1998 it still came as a shock.

OCD is a condition in which people engage in obsessive, often repetitive behaviour such as washing hands or switching lights on and off.

It can be characterised by unreasonable fears, such as that if sufferers don't carry out the rituals properly, either they, or someone they love, could come to harm.

Tricia had never heard of the condition, she admits. She recognises now that Jonathan had lots of obsessions that are typical of OCD; switching lights on and off, becoming obsessive about things being in the right order. What was unusual was that this obsessiveness had transferred to eating. That was what made it, as the psychiatrist told them, a life-threatening condition.

Looking back on it now, Tricia believes it may have been her own fight with breast cancer in 1992 that was the root of Jonathan's obsession about diet. "We think that was the trigger for him worrying about his health," she says. "He did discuss his OCD with us, and said he felt he had had the condition since he was quite young."

Jonathan was admitted to Bootham Hospital and then, in an attempt to help him put on weight, to York District Hospital - where the dietician was "wonderful", says Tricia. He did manage to put on some weight and, when he came out of hospital, his condition seemed to have levelled off, says Roger.

"We tried to keep the situation as calm as we could. We didn't want to cause him any anxiety."

Early in 1999 things abruptly took a turn for the worse.

"He found a magazine and read an article about posture at the table when you are eating a meal," says Roger. "This seemed to just get inside his head. It reached a situation where he couldn't sit properly at the table. He felt uncomfortable and he kept moving about."

His weight started falling off: but it wasn't that he was starving himself, says Tricia. In fact, he was desperate for help. "He didn't eat, because he couldn't sit at the table or anything," she says, close to tears. "He begged me to feed him upstairs, to see if he could eat upstairs. It was horrendous."

Doctors and psychiatrists looking after Jonathan in York decided that a referral to the behavioural psychotherapy unit at the specialist Maudsley Hospital in London would benefit him.

Crucially, however, the psychiatrist - a senior registrar - who discussed this with Jonathan and his parents left the choice up to Jonathan, one of the reasons the Moirs later complained to the health ombudsman.

"You don't give OCD patients choices," says Tricia. Jonathan told the psychiatrist he would think about it. "And he thought about if for several weeks," says Roger. As a result, by the time Jonathan was referred to the Maudsley, his weight had dropped to little over seven stone - and the Maudsley couldn't accept him, because his weight was too low.

A battle began to help him put on weight. At the end of May Jonathan was admitted to York hospital again and put on a feeding tube.

It worked for a while - until, his OCD getting out of control again, Jonathan began to manipulate the rate of feed in the tube. Desperate, his parents managed to arrange for him to be admitted to the famous Priory Clinic in London.

There, they managed to get him eating again. But the hope was short-lived. An old prostate infection returned; and the medicine Jonathan was given for it made him feel unwell.

"He stopped eating again," Roger says. "The clinic had reached a point where they didn't know what to do next."

At this stage, says Roger, the eating disorder unit at the Maudsley Hospital - a separate unit to the behavioural psychotherapy unit which had earlier said it could not take Jonathan because his weight was too low - said they would admit him, but he would have to wait several weeks.

He didn't have several weeks. On December 9 he was admitted to York hospital and put on a feeding tube again. He died that night.

Throughout, say the Moirs, they never thought they were going to lose their son. "We were just focused on getting him right," says Tricia. "We never thought about him dying."

"We failed to recognise what was staring us in the face," adds Roger. "He was slipping away." Now, after an internal investigation and a report by the health ombudsman, Selby and York Primary Care Trust, which took over responsibility for mental health care in York after Jonathan died, has acknowledged there were failures in his care and have apologised to his parents.

Garry Millard, the Trust's director of mental health, says changes have been put in place which mean the same thing could not happen again.

That is good news. Tragically, for Jonathan, those changes came far too late.

OCD explained

OCD is the name given to a condition in which people experience repetitive and upsetting thoughts or behaviours. It is characterised by both obsessions and compulsions. Common obsessions include fears about dirt and germs; unreasonable fears of harming other people, especially loved ones; worry that things such as household appliances are not safe; and an obsession with order and symmetry.

Common compulsions include excessive washing and cleaning; checking; and repetitive actions such as touching, counting, arranging and ordering. Often, carrying out a compulsive ritual makes the sufferer feel less anxious - but makes the urge to do the same thing again next time even stronger.

OCD is not a form of madness. Between two and three per cent of the population are believed to have the condition: but almost everybody experiences the type of thoughts and worries (such as double checking the front door or the gas) that people with OCD have, according to charity OCD Action. The difference is that most people are able to dismiss these thoughts.

OCD Action, the national charity for people with OCD, has an informative website at www.ocdaction.org.uk It can also be contacted on 0207 226 4000

Updated: 11:26 Friday, August 20, 2004