Eating disorders in Scotland: How will we manage?

On 21 April 2012, Jane Morris spoke at the High Kirk of St Giles in Edinburgh, where a memorial service for people who had died of Anorexia was taking place. Today, she still feels the outrage and indignation she felt then, that this illness is devastating lives – and feels frustrated at our failure to employ what strategies we do have for tackling it. Services are improving “death by death”, she said, due to the “heroic energy” of the bereaved, but there is still a long way to go.

In her talk to the RSE, Dr Morris described the history of eating disorders, gave an idea of the current picture, with particular reference to Scotland, and spoke about work that will, she hopes, continue to improve services in the future.

Quoting the late Professor Arthur Crisp, a psychiatrist who did much to improve our understanding of Anorexia nervosa, Dr Morris said that calling Anorexia nervosa an eating disorder was “like calling lung cancer a cough disorder”. The ‘eating’ problem is just one aspect of a condition that involves an obsessive terror of body fat, and an extreme need to take control of the body; and much else besides. In fact, the word Anorexia itself is a misnomer, she said; its definition is ‘lack of appetite’, but the appetite part of the brain in patients is actually “working overtime”.

There has been a modern tendency to blame factors such as fashion magazines showing pictures of very thin models for Anorexia. But eating disorders have been around throughout history, even in the Old Testament. In the 14^th Century, St Catherine of Siena refused food until she was allowed to be a nun, and even then used to fast and induce vomiting – claiming it was for religious reasons. A little later, Mary Queen of Scots “survived Anorexia”, although she didn’t survive Elizabeth of England, Dr Morris said. And in the 17^th Century, the physician Richard Morton wrote what are considered to be the first descriptions of Anorexia, diagnosing deliberate, self-starvation in two cases. In one case, a young woman died after refusing treatment; whilst in the other, a young man recovered having been told to leave town and drink much milk. The poet Lord Byron also had a well-documented obsession with losing weight and exercise; he died in his early 30s, although it’s not known whether this was due to an eating disorder.

By the late 19^th Century, eating disorders were recognised as curios rather than mainstream diagnoses and, today, a number of people have been diagnosed retrospectively of having been likely sufferers. These include the French philosopher and mystic Simone Weil, who was known to under eat and who was described as “odd, humourless and irritating”.

In the 20^th Century, war time – and its accompanying food rationing and sense of dislocation and uncertainty – brought its own challenges. Dr Morris described how one of her own family was sent to the countryside to be safe from bombs, but wouldn’t eat the more plentiful food and meat there. He began wasting away until brought back to the bombs; several of his children’s generation went on to have eating disorders.

Dr Morris described the case of an Aberdeen teenager whose case notes were discovered recently. Miss C was the younger of two orphaned siblings, taken to live with an aunt in the city. Her notes show that she was treated with many of the treatments we still use today, although in today’s world we’d also focus on what she was thinking, rather than just what she was doing. Nobody suspected she was suicidal but in 1953, when she was in her early 20s, she threw herself out of a window and died.

Moving closer to the present day, Dr Morris spoke of how the Eden Unit at Aberdeen’s Royal Cornhill Hospital came to be set up. She paid tribute to Dr Harry Miller, who campaigned for the setting up of an eating disorders managed clinical network in Tayside and to Chris Freeman, based at Lothian’s Cullen Centre, who pioneered the use of cognitive behavioural therapy (CBT) for eating disorders.

Other figures who have contributed to advances in the management of eating disorders include Aaron ‘Tim’ Beck, who developed CBT; Gerald Russell, who published the first description of Bulimia nervosa in 1979; and Professor Chris Fairburn, who recognised that CBT was a particularly good fit for Bulimia.

Dr Morris described how there are four dimensions of experience – thoughts, feelings, behaviours and physical – and the impact that an eating disorder can have. She cited thoughts such as “my heart is racing – I must be in danger” and “I will get intolerably fat if I eat this – how dare they fatten me up”; feelings such as fear and anger; behaviours such as shouting, aggression and running out; and physical manifestations such as hypoglycaemia, racing pulse, sweats and the effects of the ‘fight or flight’ hormone adrenaline.

There are now specialist outpatient, community and inpatient services for people with eating disorders in Scotland; previously inpatient treatment was only available in the independent sector, but now there are beds available in specialist centres. There are, however, issues with long waiting times, which means the risk is that non-urgent patients, who actually respond best to outpatient interventions, don’t get seen until their condition has worsened.

There are positive developments in treatment too. She pointed to Lorna Champion’s work with interpersonal therapy (IPT), for example. “This therapy is particularly good for patients with Bulimia, many of whom are particularly sensitive to difficult times and events such as bereavement. We need a better safety net of medical help and specialist psychiatric inpatient units, as well as community services”, she said.

But although the situation has improved markedly in the last few years, people still die. She cited the case of Lindsay Weddell, who died, aged 20, in 2004. An Ombudsman’s inquiry found she had been transferred between nine different hospitals towards the end of her life.

There have been guidelines published, by NICE in 2004 and by Quality Improvement Scotland (now Healthcare Improvement Scotland) in 2006. Other steps include the EEATS training programme (Eating Disorders Education and Training Scotland) (http://www.eeats.co.uk/index.php), which is “unique in the world”, Dr Morris said, and provides accredited specialist training for clinicians involved in eating disorders.

Although we have these guidelines and tools now, why have we been so slow in investing in the wellbeing and survival of the “brightest and best” of young people with eating disorders? Dr Morris said that whilst people might say it isn’t ‘rocket science’, a parent of one of her patients is, in fact, a rocket scientist and said that eating disorders are more complex. And whilst there are guidelines, there aren’t really any new treatments.

There are, however, promising technologies, such as telemedicine, and therapies, such as family-based therapy, which have the potential to make a real difference, she said.

Family-based therapy involves the patient and family talking together with a therapist and helping them get in touch with their fears – and to understand that Anorexia isn’t a lifestyle choice. The work of the MARSIPAN working group is also promising (http://www.rcpsych.ac.uk/usefulresources/publications/collegereports/cr/cr189.aspx).

Unfortunately, we still have little idea about what does and doesn’t work – and we need to know this so that we can plan treatment pathways. In Scotland, we are making some headway on data collection to allow prospective studies to take place, but it’s difficult because death certificates don’t accurately reflect where Anorexia was a cause or contributor. Technology too has its challenges: technology allows Anorexia to spread like a virus but also helps us to fight it, for example, through telemedicine.

Anorexia is a physically dangerous illness, and a demanding one. People “hear” and feel all sorts of negatives about themselves, which makes it hard to think and plan – or do anything. There are some potential drug treatments – for example, medicines to help patients cope with depression and anxiety might at least provide some respite from some symptoms. But there is little compelling evidence for other potential treatments, such as the oxytocin hormone.

Deep brain stimulation is another potential therapy, working like a ‘pacemaker’ in the brain. There are other avenues of research being explored – for example, sibling studies, considering why one sibling develops an eating disorder whilst another doesn’t, might be fruitful in considering triggers; and what promotes resilience. There is also the possibility of developing screening tests, perhaps involving genetic testing; although this would be tricky as there is no one eating disorder gene.

There is still a long way to go, and Dr Morris said she is still frustrated and sad that people are still dying, but added that new research is bringing hope. Meanwhile she and her colleagues are doing their best to find the balance between ‘tough’ and ‘love’ to help today’s patients as best they can.

Questions

Asked whether the developing world faces the same problems with eating disorders, Dr Morris said that they exist all over the world. Not every culture has Bulimia and binge eating, she said, and it’s not always a reaction to body image. She pointed to Fiji, where there were few instances of eating disorders before television; but with the advent of TV, eating disorders have become ‘rife’ and weight has gone up.

Asked whether hypnosis helps, Dr Morris said that there has been some work around whether it is effective, and not just direct hypnosis but other techniques too. There has been promising research around EMDR (eye movement desensitisation and reprocessing), for example, but this is not so far statistically valid.

One questioner wanted to know about the symptoms that indicate that someone has recovered from an eating disorder. Dr Morris replied that it is “symptoms of health”, and an absence of eating disorder symptoms.

Eating disorders are particularly common in young girls with diabetes, commented one member of the audience, who wondered whether it is because they have to think about what they eat. Dr Morris said that the time for saying “let’s not obsess” about what we eat is past, because most people do, and if you say “stop obsessing,” you can make it worse.

One questioner asked about the role of psychotherapy, remarking that the lecture had focused more on clinical care. Dr Morris explained that psychotherapy can be tough and demanding, and that patients need to be well enough to do it. The hope is that successful medical therapy will let them cope with psychotherapy.

Asked about transition times for patients – for example, moving away from home to go to university, or moving to adult services – Dr Morris emphasised the importance of helping students stay in touch with services, even though they might now have to manage a change of clinic. Imaginative solutions could include choosing a ‘lead’ service whilst a student at university, with the possibility of video consultations to keep in touch.

Asked how eating disorder services would deal with the NHS Scotland 18-week target on referral to treatment, Dr Morris said it is a question for politicians. But she added that she knows her colleagues go above and beyond their working hours because of their passion and goodwill. She said that units sometimes come under pressure to discharge people so that someone in more extreme circumstances can be admitted, but that it is important to “finish the job”.