Parents of anorexia girl speak out

Image caption The Lee's daughter Helen died of anorexia

The first UK memorial for lives lost to anorexia has been held at Southwark Cathedral.

The parents of Helen Lee, who died in 2003, were amongst the congregation. Here they tell Helen's story.

"As a child and up to the age of about 13 Helen was happy, gregarious, and had a good circle of friends.

"She was curious about the world around her and would try new activities and experiences, although she would be careful to consider the risks.

"Despite her being such a positive and talented person, we believe that Helen's illness, the profound anorexia, was tied up with feelings of failure, lack of self esteem, inadequacy, fear that she could not cope, unreasonable feelings of responsibility for others, guilt and an inability to control or manage what was going on around her.

"In order to reach an understanding of Helen's death, it's important to understand something of the seriousness of eating disorders.

"They are not just superficial teenage fads or forms of vanity.

"They are life threatening psychiatric disorders in which the sufferer, in the case of anorexia, simply does not believe that she or he is worthy of nourishment and, in the case of Helen, may even have believed that starving herself would stave off "bad things" from happening to others.

"Helen herself said that it was easier to contemplate the thought of her own death than to think about the warfare and pain she would experience inside her head if she ate something.

"Helping an anorexic is incredibly difficult, and simply telling an anorexic to eat is about as pointless as telling a manic depressive to cheer up.

Image caption Helen died at the age of 18

"The impact on family life is dreadful, and in our case there were times when we physically fought (and failed) with Helen to get her to eat, to accept medical help, or to stop her from exercising excessively.

"Faced with these sorts of conflicts, Helen would run away, even, as an in-patient at Huntercombe, to the point of climbing the parapet of a bridge over the M4.

"At her lowest ebb on the Eating Disorders Unit at Huntercombe, Helen was having to be sedated, force-fed and was on24-hour supervision.

"Her intellectual insight into her condition grew and she forced herself to return to taking food by mouth.

"She astonished and delighted us by emerging from behind her facial mask, disposing of her nasogastric tube, agreeing to see us after a long period of rejecting us and eventually she was taken off section in September of 2002.

"She was determined to regain her life and with her 18th birthday approaching and the transfer to adult services imminent, the question was: how should she be helped and cared for?

"She was an 18-year old with profound experiences, insight and an ability to help other people in trouble, but at the same time she was still a little girl in turmoil, not at all the sort of autonomous adult that the mental health law seemed to assume.

"She needed intensive support from the community mental health services, or else the in-patient care which she said she would never return to. We kept trying to tell the professionals this, but at the same time were trying to avoid letting Helen feel that we were in any sense losing faith in her determination."

Helen died on 15 February 2003, of multiple organ failure.

At Helen's Inquest the Coroner gave a narrative verdict and drew particular attention to the need for better transition between adolescent and adult mental health services and the need for more effective protocols for the management of the nutritionally compromised in hospitals, which has contributed to the development of the current NICE guidelines.

This is an extract from the report submitted by the Lee family to the Coroner.

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