Anorexia, the Mental Health Act – and Kayleigh

Anorexia Nervosa is a fairly common mental disorder; the most common age of onset is 10-19 years of age; nine out of ten patients are female. Anorexia is also a mental disorder that can be fatal: chronic starvation can lead to a range of life threatening conditions, including heart problems and kidney failure. Indeed, it is estimated that as many as one in five of patients with anorexia will die each year.

So there shouldn’t be any problem using the powers of treatment in the Mental Health Act with people with anorexia, should there?

That certainly wasn’t the case in the 1990’s. Some mental health professionals did not like the idea of compelling someone with a mental disorder to receive physical treatment (for example, tube feeding or rehydration), and often the MHA was not used, even when a person’s life was at risk.

I could never understand this. As far as I was concerned, anorexia nervosa was a mental disorder within the meaning of the Act, both then and now, and if someone’s life was in danger as a result of this disorder, then I had no ethical problem in using detention under Sec.3 to ensure that they received appropriate treatment. Over the years I have detained several people with anorexia under the MHA, simply in order to save their lives.

Then in 1996 there was the case of Nikki Hughes. Nikki Hughes was a young woman who had suffered from anorexia since her teens, who died in January 1996 as a result of starving herself. The doctors treating her had sought legal advice regarding feeding her without her consent, and they were told that this could lead to charges of assault against the doctors and the hospital. She was therefore allowed to die.

In response to this case the Mental Health Act Commission issued guidance in 1997, stating in part that some patients "may not be able to make an informed choice as their capacity to consent may be compromised by fears of obesity or denial of the consequences of their actions". The Care Quality Commission issued updated guidance in 2008 (Guidance on the treatment of anorexia nervosa under the Mental Health Act 1983). While the CQC believes “that it is only in its most severe manifestations that anorexia nervosa may be considered to require compulsory admission” they advise that detention is justified “in rare cases of serious threat to health, where compulsory feeding may be necessary to combat both the physical complications and the underlying mental disorder.”

However, there have continued to be cases where people with anorexia have died, when use of the MHA may have prevented it. In 2004 Samantha Price died from heart failure at the age of 22. Her family maintained that she should have been detained under the MHA, but the South West London and St George's Mental Health NHS Trust said that “forcing patients to come into hospital for treatment against their will simply does not work with patients like Samantha”.

As recently as this year Jonathan Edwards died of complications arising from his anorexia. Newspaper reports of the inquest (Swindon Advertiser, 29th June 2010) stated that his mother had told the coroner “that her son’s only hope of survival was to be sectioned and forced to eat by trained eating disorder specialists.” Despite the CQC and other guidance, it was still stated at the inquest as fact that “as Jonathan acknowledged his condition and periodically asked for help, to section and force feed him would have been illegal.”

I recently received a request from the Charwood Child and Adolescent Mental Health Service (CAMHS) to assess Kayleigh for detention under the MHA for treatment. She was just 17, and had a 2½ year history of anorexia nervosa. During that time, she had had two informal admissions to the regional children’s anorexia unit. Two weeks before referral, she had had an acute medical admission with a severe infection, as a result of poor nutrition, and had nearly died. She had also suffered damage to her heart because of the anorexia, but persisted in playing in the local basketball team, even though she had been warned that such exertion could be dangerous.

A couple of days before I saw Kayleigh, her care coordinator had calculated her Body Mass Index as less than 14 (20-25 is normal), and her blood pressure was dangerously low. Even though there was evidence that her very poor physical condition was putting her life at imminent risk, she remained in denial that she was not feeding herself adequately, and there was evidence that she was “water-loading” when she knew she was going to be weighed in order to deceive her workers.

A further concern was that her mother, with whom she lived, was colluding in some way with Kayleigh, and was herself in denial of the seriousness of her daughter’s condition.

Her CAMHS consultant, another Sec.12 doctor and I went to see Kayleigh at home. We expressed our concerns about her current condition, and the fact that she was still losing weight, despite her recent medical admission. However, she was not prepared to consider a hospital admission.

“I am all right, you know,” she said. “I’ll be fine as long as I can have therapy and treatment at home.”

“But therapy clearly hasn’t been working for you,” I said. “You nearly died a couple of weeks ago, but you still don’t seem to think there’s a problem. Do you want to die?”

“No, of course not. I enjoy life. I like playing basketball.”

I noticed that her knuckles were grazed. “What happened to your hand?” I asked her.

“Oh, just had an argument with a wall. I punched it out, that’s all. It’s nothing.”

This eventually led in to an admission that she had been cutting herself over the last few days. She also admitted that she had told her care co-ordinator that she had been feeling suicidal, and was also afraid that her mother might kill herself if Kayleigh wasn't there to keep an eye on her. There was obviously a lot going on.

Despite all this, she didn’t come across as being clinically depressed. But there was overwhelming evidence that her anorexia was controlling her. If it continued, she might very soon, within a matter of days, reach a point at which her body would not be able to recover from the damage that had been done. We concurred that she was unable or unwilling to consider that her behaviour was placing her at grave risk, and that she was powerless to modify her behaviour or recognise the risks. As she undoubtedly had a mental disorder within the meaning of the Mental Health Act, and it was clear that the only way she was going to receive necessary care and treatment was through admission to hospital, we completed an application for her to be detained under the MHA.

Of course, that was only half the problem. Once the decision to detain had been made, I knew that the specialist unit where she had been before had no beds, and the only bed that had been identified was in a private hospital with a child and adolescent ward over 70 miles away. And I would have to get her there. This is a common problem with children and adolescents. Young people under the age of 18 cannot be admitted to an adult psychiatric ward, and there are no suitable beds at all in the county in which I work.

We also had to inform Kayleigh’s mother of the decision. As we anticipated, she was not pleased. I informed her of her rights as nearest relative, which include the right to apply to the hospital for the discharge of her daughter, and she informed me of her intention to exert her rights at the soonest available moment. Kayleigh also expressed her intention to appeal against her detention.

Since the consultant had indicated to me that there were no imminent medical reasons why she needed to be transported in an ambulance, I offered to take Kayleigh, with her mother, to the hospital. I knew from bitter experience that the local ambulance service would be less than keen to transport a patient to a hospital so far away, and would therefore delay it until the shift change. I could foresee a delay of 5 or 6 hours before an ambulance would arrive, which would not be in the interests of the patient, who would just get more and more wound up waiting – and I confess it would not be in my interests, as I could see that I would not get home until late evening.

Kayleigh’s mother somewhat reluctantly agreed to this. I suggested that we went straight away (it was about 1pm), but mother asked for an hour to get things ready and to have some lunch. I agreed to this, although later on wondered quite how much of a lunch Kayleigh was going to have, and when I returned to the house I half expected the two of them to have disappeared.

But they were both present and ready to go, and by now more resigned to the inevitability of the admission. I took them to the hospital without incident.

And Kayleigh’s still alive.