With Eating Disorders Awareness Week starting on Sunday, Jane Morris, a consultant psychiatrist and head of an innovative adolescent support unit in Glasgow, reports on what can be done to help them
Holly, a thin, pale 16-year-old, was huddled in a warm room under layers of sweaters and fleeces. You probably know Holly, or someone just like her but perhaps you haven't noticed.
In a secondary school of 1,000 pupils, there could be half a dozen Hollys suffering from anorexia nervosa, as well as 300-400 girls and boys suffering from normal weight eating disorders, such as bulimia nervosa.
In S1 Holly was a popular girl but she doesn't socialise much now - no clubbing, no interest in boys - and her friends have mostly given up on the effort to include her. She huddles around school radiators or studies quietly at the back of the classroom.
Holly's school reports are full of high marks and comments of "excellent, though perhaps she should contribute more to class discussions". When she achieved seven As and a B at Standard grade, she was devastated by the B.
One of her friends spoke to guidance staff, but Holly was quite indignant and insisted all was well.
Games teachers expressed concern too: she used to run and exercise compulsively but in S5 physical education was optional and Holly spent her free periods in the library. No one realised that she wouldn't sleep at night until she had done 300 sit-ups in her room.
Holly's parents dragged her unwillingly to her doctor and a therapist and finally they came to the Parry-Jones Service at Gartnavel Royal Hospital in Glasgow. The innovative day service was set up in April last year to provide treatment for young people with anorexia. It aims to reduce long-term risk of mortality while keeping adolescents in their familiar home and school environment.
Holly followed her parents into the little interview room and sulked and fidgeted in her seat while her mother told of her precipitous weight loss, the loss of her menstrual periods and her isolation from friends.
"In the school holidays she spent all day and evening studying in her room.
She refused to come down to join us for meals; she wouldn't let anyone see her eat. We left food outside on trays and it always vanished mysteriously, but Holly just got thinner and thinner," said her mother.
Holly had responded to her parents' concern and frustration with tears and anger. She agreed that she had become depressed and irritable but wouldn't accept any idea that she might be too thin and refused to eat any more.
The family doctor had referred her to local services but, in spite of liking her therapist and saying the right things, she still lost weight.
Her father had believed things had improved and Holly was eating with them at the table again, but then he discovered she was vomiting after meals. At that point her therapist asked the Parry-Jones Service for a consultation.
After the family session, Holly spoke with one of the service's nurse-therapists. A questionnaire showed that anorexia was dominating her thinking and paralysing all her efforts to be normal.
It was not clear why Holly's problem had developed. She had felt close to her family until anorexia caused quarrels but she was grateful to her parents for taking responsibility for fighting it because it had gone past the stage where she felt capable of doing anything about it for herself.
She was reluctant to take time off school but agreed to attend sessions at the Parry-Jones Service on Tuesdays after school and on Thursdays, to continue to see her therapist locally and have her health monitored by her doctor. The alternative seemed to be hospital admission.
Holly also agreed that if her health deteriorated as she waited for the new support groups to start, she would go into the unit for a while to join the intensive eating for recovery programme.
The groups provide various strands of treatment considered essential to recovery. At first Holly preferred the psychological and nutrition education group, which gives factual rather than emotional support. As she got to know the other girls (and found they all worried that they were the fattest) she began to look forward to the motivation and assertiveness groups too and was able to trust the others enough to speak about her feelings. She found the creative therapies sessions "embarrassing" at times but made some striking images in paint and clay, which she took to her individual therapy appointments as a starting point for discussions.
After her initial terror, Holly learned to tolerate and even enjoy the communal meals and snacks a dietician prescribes and which the therapists encourage the girls and young women to eat as normally as possible, without resorting to anorexic compulsions.
Holly's parents found the group for relatives helpful, as much for the cameraderie as for the content. They agreed with other families that there was a more relaxed atmosphere in the home once everyone was working with a shared understanding.
Holly has regained some weight but has a long way to go. She sometimes feels overwhelmed by the difficulty of it all and is tempted to backslide into anorexic habits. As she regains energy and looks more normal, she is able to spend more time with other teenagers and there will be new challenges for her to face to help with the next stage of her recovery.
The Parry-Jones Service is named after William Llewellyn Parry-Jones, the former much-loved professor of child and adolescent psychiatry in Glasgow who died in 1997. He was passionate about his work and had, with his wife, Brenda, an archivist, produced papers on the history of eating disorders.
The service is the first of its kind in Scotland, allowing teenagers with severe eating disorders a chance to receive intensive therapy without necessarily having to stay in hospital. If admission is unavoidable, it can be brief and part of a seamless progression from maximum support through to greater independence and self-motivated care.
In-patients can also access the programme and use it to wean themselves gradually back to being a day patient.
Links are nurtured with community teams and school guidance teachers to facilitate and support patients' return to local care. Above all, relatives and carers are integrated into the service. These people suffer the strain of living with someone who is seriously ill, often with undeserved guilt and sometimes with a desperation that can be counter-productive.
Anorexia nervosa is a dangerous illness, with the highest mortality rate of any psychiatric disorder. It can be as serious as leukemia, though it is usually curable. If untreated there is a strong risk that even if patients return to normal weight (and many do not) they will suffer loss of control over their eating, perhaps with self-induced vomiting, depression, anxiety and low self-esteem.
Early intervention is known to be helpful, though it does not lead to a speedy cure. Great efforts are made to help people to have patience, since a forced and hasty weight gain is prone to setbacks.
Those parts of Britain where specialist eating disorders clinics are available have lower mortality and morbidity.
The Parry-Jones Service aims to help young people become motivated to take responsibility for their recovery and nourishing themselves. At the same time, staff monitor their physical health to minimise the risks of permanent damage at a time of crucial growth and development: it is a delicate balancing act.
Because of ethical concerns, most psychiatric research on eating disorders has been conducted with adult patients, excluding younger patients and those of most dangerously low weight - the very group the Parry-Jones Service treats. This leaves the team bereft of research evidence but also free to be pioneers in the creation of effective therapies. The team works with Dr Chris Williams, a pioneer of computerised self-help, a medium which appeals to computer-literate adolescents.
Two terms of the service's formal programme and a host of less structured activities have been completed now and an audit of patients and their families shows there have been definite benefits. Comments and letters to the service have been encouraging and criticisms help to improve the design of each new block of groups.
Future plans involve joint work with therapists in the community, visits to patients in their homes and extending communications with both children's and adult services.
Parry-Jones Service, Gartnavel Royal Hospital, Great Western
Road, Glasgow G12 0XH, tel 0141 211 3589
Scottish Eating Disorders Interest Group (SEDIG) holds one-day conferences on eating disorders twice a year in Perth. Contact the Secretary, Heather Marrison, at the Cullen Centre, Tipperlinn Road, Edinburgh EH10 5HF
Eating Disorders Association is a useful source of information on services, NHS, private and self help.Wensum House, 103 Prince of Wales Road, Norwich NR1 1DW
Helpline, Mondays-Fridays 9am-6.30pm, tel 01603 621414
Youth helpline, Mondays-Fridays 4-6pm, tel 01603 765050
Anorexia Nervosa: A Survival Guide for Families, Friends and Sufferers, Janet Treasure, Psychology Press
Anorexia Nervosa and Bulimia: How to Help, M Duker and R Slade, Open University Press
Eating Disorders: A Parents' Guide, R Bryant-Waugh and B Lask, Penguin