Sophie* developed an eating disorder when she was 11 years old. With the help of child eating disorder services, she got better and by the age of 16 had achieved a stable weight. But her A-levels proved tough and she relapsed. This time, she had to face the challenge of navigating adult eating disorder services as a vulnerable teenager. When she was finally referred to me nearly eight months after her relapse, she was 19 years old with a BMI of nine.
I worked as a consultant psychiatrist in child eating disorders before moving to adult services in Oxford. When the government announced in the Five Year Forward View a £30m investment for eating disorders in child and adolescent mental health services (Camhs) each year until 2021, I was delighted. We know early intervention offers the best chance of recovery and it’s great to see that 66 new specialist services have been set up across the country.
The problem is, anorexia nervosa is a serious mental illness – not a phase of adolescence.
As someone who’s worked with both child and adult services, the problem is clear to me. People who only work with children have this sort of fantasy that everyone will recover by the time they’re an adult if we spot their illness early enough. I used to share colleagues’ optimism that early intervention would aid recovery. But when you see young people on an inpatient unit whose facial muscles are visible through the skin, young people who are so malnourished their skin is blue, you realise it isn’t that simple.
The mean age to develop an eating disorder is 15, but the mean length of illness is approximately six to eight years. Better Camhs doesn’t equal fewer patients going into adult services. The success rate for treatment is only 50%, and like Sophie, a lot of patients sadly go through a long period of improvement before relapse.
In Camhs, most child psychiatrists and paediatricians have had some eating disorders training. Adults know they have a responsibility for the health and wellbeing of children so, generally, children are admitted before a life-threatening deterioration. When you’re 17 you can access Camhs services that are benefiting from investment. At 18 you can’t.
The majority of patients with an eating disorder are adults. Many are fearful of seeking help, and when they do decide to see their GP they are often turned away. Even when they are referred to specialist services, they face long waits – 16 months’ wait is routine in Oxford and across the country.
When adults finally access services, they encounter problems there, too. In some adult eating disorder services there are no consultant psychiatrists specialising in eating disorders. Adults suffering from severe anorexia or bulimia nervosa need a multidisciplinary approach because they will have other physical or psychiatric conditions such as dangerous vitamin and electrolyte deficiencies, or depression and anxiety.
Other healthcare professionals do not have sufficient training to recognise and manage these conditions safely. Adult patients are a lot sicker than young people: our mean age of patients is 29 years and by this time they have 15 years’ history of illness. Adult services also have the highest number of referrals: in Oxford, the number of Camhs referrals per year is about 100 patients. For adults it’s 300 – and that doesn’t account for the additional unmet need where suffering adults aren’t getting help.
In Sophie’s case, when I tried to admit her to hospital there was no designated person in the hospital to deal with eating disorder admissions. The hospital did not have the equipment or know-how to manage her condition. She spent five months in an intensive care unit with multiple organ failure. In Camhs, there is an identified person to call and ask about admissions. But for young adults like Sophie, there just isn’t a clear pathway for those desperately needing help.
According to the Five Year Forward View, there will be a new pathway for adult eating disorder services in 2018-19 to properly guide patients through the system. It’s hard to be optimistic about this in context of wider NHS cuts and the increasing numbers of adults seeking treatment – in Oxford, over the last five years there has been a 50% increase in referrals.
Seeing eating disorders as a teenage illness neglects a huge swathe of suffering people. It is worrying that in some areas of the country services are expected to reduce referrals from Camhs to adult services. There are no quick fixes for eating disorders. The majority of patients require 20-40 sessions of psychological treatment. For 20-30% of patients, the illness will span their entire life.
Incredibly, Sophie survived. Others aren’t so lucky. Eating disorders have the highest rate of mortality among psychiatric disorders yet these deaths are entirely preventable. There must be specialist services for all ages – not just Camhs.
*Not her real name
Dr Agnes Ayton is vice chair of the eating disorders faculty at the Royal College of Psychiatrists
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