Wednesday, February 23

Prader-Willi.

Tim and Mark are both up in arms over this:

A 31-stone man has been detained in a mental hospital against his will because he cannot stop eating, it emerged today.

Chris Leppard, 23, of Hastings, East Sussex, suffers from Prader-Willi syndrome, which means he cannot tell when his stomach is full and could eat so much that it will kill him.

East Sussex social services "used powers normally used to detain mentally ill people who might harm themselves or others" to section him (forcibly detain him against his will), according to the Sun.


Saith Tim:

They’re being really tough on obesity these days ... How long before that 20% of the population that smokes gets locked up?


Mark calls it "worryingly Soviet" and says:

Sectioning someone is a pretty awful thing to do and surely must only be used when a person is wholly unable to comprehend their circumstances. This poor guy is not mentally ill and is fully aware of his condition. This is a travesty.


Now, I'm as worried as the next Libertarian about the state's appropriation of our private lives, but this is a red herring. Chris Leppard has not been locked up because he's obese or because he enjoys his food. He's been locked up because he has a very nasty syndrome one of whose elements is a mental defect, which is shortly going to kill him.

Patients with Prader-Willi syndrome do not have a functioning hypothalamus, the part of the brain that tells you when you're full. As a result, they simply cannot stop eating. Five minutes after eating a seven-course meal, these people feel literally like they haven't eaten in weeks. All the brain's emergency survival mechanisms that are only supposed to kick in when you're starving to death (and that most of us will therefore never use) are active in Prader-Willi sufferers on a daily basis. Children with Prader-Willi get into fights at school as they attack other children to take food from them. No matter what a Prader-Willi sufferer may know rationally, they're fighting a battle against the irrational parts of their own mind. And, cruelly enough, Prader-Willi comes with an unusually slow metablism, meaning that patients need far less food than your average person anyway, and typically also comes with learning difficulties, making it even more difficult for sufferers to pit their intelligence against their instinct. If not properly supervised at all times, they can easily put on a couple of stone every few weeks. By their late teens, it's not unusual for them to be wearing ventilator masks overnight, to stop them choking to death in their sleep. Very few of them live past forty.

To say, as Mark does, that Chris Leppard is fully aware of his condition misses the point entirely. Mental hospitals are full of people who are fully aware that they have self-destructive compulsions, but that awareness doesn't allow them to do anything about it. People with OCD are usually fully aware that their hands are clean, their door is locked, or whatever, but that awareness doesn't enable them to stop washing their hands or checking the door for the fifteenth time. There's a lot more to our brains than awareness.

To say that Chris Leppard is not mentally ill is simply wrong. Yes he is: part of his brain doesn't work properly.

Back to The Guardian's report:

Mr Leppard's mother, Anne, told the newspaper: "Four people turned up and after some questions, said they were taking him away.

"Chris was really upset, crying, saying he didn't want to go and that he wasn't mental.

"We didn't know they were coming to take him. He is being punished for being ill. He has a physical problem. He was working well towards losing weight."

She added: "He asked social services to give him six months to prove he could lose weight. They didn't give him six days. I had stopped giving him money for food.

"For the first time in years we were getting somewhere. We had locked food cupboards, that was a big step."


Hmm. Now note this little snippet:

The council became aware of his condition after he was featured in a BBC documentary.


I saw that documentary. It was very good. It followed the lives of three people with Prader-Willi syndrome. One of the interesting things about it was that two of those people (both children) really wanted to do something about their condition so that they could gain some genuine independence, while Chris Leppard paid lip-service to the idea of self-control so that he could pretend to be independent. The two children knew that, until they learnt to handle their illness, they could never be independent, because they understood what "independent" meant. Chris Leppard thought that being independent meant not living with his mum.

He is being punished for being ill.


No, he is having his life saved.

He has a physical problem.


Yes, and a mental problem too. That's not an insult; it's an unfortunate fact.

He asked social services to give him six months to prove he could lose weight.


The words missing from that sentence are "yet again" and "yet another". Anyone who saw the program knows that he keeps saying this, and that he keeps failing.

He was working well towards losing weight.


No, he was putting on weight at an astounding rate. Telling him he's succeeding when he's failing is part of what has led to his current problems in the first place. This woman is totally irresponsible, and has simply refused to take her son's illness seriously. I mean, look at this:

I had stopped giving him money for food. ... We had locked food cupboards, that was a big step.


Parents of Prader-Willi children lock the food cupboards when they're in their early teens, at the latest. Anne Leppard waited till her son was twenty-three and thirty-one stone. She'd stopped giving him money for food? In other words, she had been giving him money for food up till a few weeks ago. The one thing a Prader-Willi patient needs to learn more than anything else is self-control, but Chris's mother never bothered to teach him. Now, when the government step in to try and save her son's life — doing what she should have done years ago — she complains.

The parents of one of the children featured in the documentary put a lot of effort into finding a solution, and eventually got their son into a school that specialised in teaching Prader-Willi children — not just giving them an education, but teaching them dietary self-control and an exercise regime, too. The parents of the other child, an American girl, sent her to a residential home for Prader-Willi children for a few weeks, where they forced her to lose weight and, again, tought her about diet, exercise, and self-control. Chris Leppard's mother gave him all the fatty, carb-packed, high-calorie food he wanted, and sat back.

The story here isn't state intrusion. It's parental negligence.
 

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