Your illness worsens – so care is cut off. A scandal is playing out in eating disorder treatment
Last week, I had a long conversation with a woman who is trying desperately to loosen the awful grip of an eating disorder. She wanted to remain anonymous; for the sake of this article, I’ll call her Jane. She is in her 30s and lives in Norfolk. Her illness, first diagnosed when she was a teenager, is known as the restricting type of anorexia, meaning that she has a long history of drastically limiting her food intake to the point of self-starvation.
Over the past 10 years or so, she has spent some of her time as an NHS inpatient. She told me about her first stay in a specialist ward, where there was “a massive turnover of staff. We all knew we needed therapy, and we couldn’t get it.” She was once moved to a residential facility hundreds of miles from home, in Scotland: “You’d hear people screaming and being held down while they were fed.” And again and again, she talked about the impossibility of coping with the repeated switch from this kind of 24/7 care to the woefully inadequate visits she received when she was allowed to go home.
Professionals and patients with experience of eating disorders talk a lot about people’s body mass index (BMI). Before concerted treatment, Jane’s had got as low as 11, which is life-threatening. When she was last discharged from full-time care, it was put between 20 and 21, denoting a healthy weight. As she tried to adjust to life outside – she had a new flat and a new job, and lived alone – she was put in the care of a support worker “who was lovely, but she had only had very basic training in eating disorders”. She began to lose weight, and was suddenly transferred to a new group of NHS personnel. They were called the intensive support team, but they said they could only see her for an hour a week.
And then came news that left her reeling: her complete discharge from the Norfolk community eating disorders service (NCEDS), the offshoot of the NHS that was meant to be looking after her. “They told me that they couldn’t keep seeing me because I was losing weight,” she told me. “So they discharged me back to my GP.” At that point, her BMI was a very dangerous 15. “But they told me things weren’t working: I wasn’t motivated.” Her paperwork said that NCEDS was now “keen to positive risk-take”, a phrase usually used to refer to taking steps to give patients more freedom while still managing their condition. Jane felt she was up........
© The Guardian
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