By Ulrike Schmidt, MRCPsych, Dr. Med. PhD, King’s College London, UK
If you have a child with cancer, you wouldn’t wait until they had reached stage four cancer before starting treatment and it’s no different with an eating disorder – if you delay treatment, then the illness becomes more entrenched in the brain and more difficult to treat.
That’s why our team at King’s College London and the South London and Maudsley NHS Foundation Trust (SLaM) set up the first episode and rapid early intervention for eating disorders (FREED), which aims to help young adults suffering from anorexia and bulimia within a matter of weeks, rather than months.
Although eating disorders have a peak onset during the middle of adolescence, treatment services are divided between those for children and adolescents (below the age of 18) and adults (age 18 and over). These services differ substantially in their culture and the treatments provided; as a result, the transition from one service to another at the age of 18 is difficult for many patients and their families.
Child and Adolescent Eating Disorder Services (CAEDS) typically provide family-based treatments, whereas adult services tend to focus more on the individual. The transition from child to adult services can therefore lead to parents – who have been very involved in treatment – suddenly perceiving that they are no longer a valued part of the treatment process.
With both services patients are prioritised in terms of medical risk. In some areas only low-weight patients are allowed access to specialist care, which creates a perverse incentive for further weight loss in those who are perceived as ‘not ill enough.’
A recent UK survey by the eating disorder charity Beat found that a third of young people with an eating disorder had to wait more than six months to access treatment, and a further third reported waiting for more than 18 months. In response to this, the UK government has set new waiting time standards for child services, where urgent cases should be seen within two weeks and all cases within four weeks.
However, these standards only apply to under 18s, meaning that if you are ‘lucky’ and get to services before you’ve reached the age of 18, you are likely to receive rapid care. However, if you develop an eating disorder when you’re over the age of 18, you’ll have to wait.
There is ample evidence that waiting for treatment negatively impacts subsequent treatment uptake, increases treatment dropout and is associated with poorer outcomes. Waiting for six months may not sound like a lot, but it can make all the difference if, for example, you’re preparing for school, college or university exams.
In addition, with every month that passes, symptoms become increasingly hard-wired in the brain and more difficult to dislodge.
Our initial results with FREED show that cutting long waiting times makes patients much more likely to engage with the treatment; reduces the high dropout rate from such care; helps patients recover more quickly than normal; and is hugely appreciated by patients and their parents.
We are now extending this to other services in the UK and also to patients aged 16 and over.
In the future I would like to see early intervention for all young people with eating disorders and for all services to be integrated across the age-span. Ideally this would mean that young people and their families are able to self-refer to services, rather than having to pass through multiple stages before they can get treatment.
World Eating Disorders Action Day is a hugely significant occasion – not only for sharing the latest information on eating disorders and uniting eating disorder professionals – but also for raising awareness of these devastating conditions.
Links for further reading:
- The Beat report: https://www.b-eat.co.uk/support-us/campaigning/waiting-times-for-treatment
- FREED at SLaM: http://www.slam.nhs.uk/media/news/slam-launches-innovative-new-pilot-for-eating-disorders
- Eating Disorders group at King’s:
About Professor Schmidt
Professor Ulrike Schmidt is Professor of Eating Disorders and Head of Section of Eating Disorders at King’s College London. She is also Consultant Psychiatrist South London and Maudsley NHS Foundation Trust.
Join Professor Schmidt in supporting World Eating Disorders Action Day. Be sure to follow along on Twitter @WorldEDDay and hashtag #WeDoAct, #WorldEDActionDay, @WorldEatingDisordersAction on Instagram and World Eating Disorders Action Day on Facebook.