Of all the very important messages we read in the B-eat research into eating disorders announced in parliament on 15 November 2017, it is that the largest part of treatment delay lies between the appearance of symptoms and people realising they do have an eating disorder. Diagnosis is the first barrier to cross. It is something we all have the power to affect – the person with symptoms, the family, friends, teachers or colleagues who suspect something is wrong, the doctors who consider the case. The research suggests we are missing the signs. We all need to wake up and recognise that most duplicitous condition we call an eating disorder.

This is very significant research1 conducted using data from thousands of people, inpatient units and NHS England spending data. Here is just a part of what it found:

  • It takes on average 91 weeks (21 months) of having symptoms before people either realise themselves, or anyone else diagnoses, that they have an eating disorder. That’s a year and nine months.
  • It takes another 58 weeks – 14 months – AFTER realising or being diagnosed with an eating disorder before a child or adolescent seeks help for the problem. Cumulatively that takes it to 149 weeks since the problem began. And for adults this period is almost double that for children.
  • The first GP visit that is so important is too often a missed opportunity. Only 14% of people are referred within four weeks of their first visit. The average is 11 weeks.
  • Referral to CAMHS is another 8 weeks of waiting for an assessment appointment.
  • Another 8 weeks wait applies for treatment to start.

That means on average, from onset of eating disorder symptoms to start of treatment it is a deadly delay of 176 weeks – over three years. Well after the window of opportunity when treatment has the most chance of success. People treated within three years are more likely to recover. All organisations involved in eating disorder treatment, help or information will work towards much needed change.

So what changes might turn these delays into opportunities to improve this situation?

  • Awareness among the general public of the signs of an eating disorder
  • Don’t write off eating problems to ‘puberty’ and fail to take them seriously
  • Recognise that this is not ‘attention seeking’ but a real illness
  • Avoid shame and stigma so that people can talk about the problem
  • Encourage people to talk about it and seek help sooner
  • Awareness among GPs of eating disorder symptoms and the referrals process
  • Better training about eating disorders within paediatric and general wards
  • More provision of specialist eating disorder outpatient and inpatient teams

Ellern Mede representatives attended the launch in Parliament of this research. It was very encouraging to see that Government allocated high-level attention to this including an address by Jeremy Hunt, Secretary of State for Health as well as the announcement of the research by MP, Luciana Berger, Labour MP for Liverpool Wavertree.

Read more about the research methodology: B-eat’s first online survey in early 2017 was accessed by 3,158 individuals. B-eat analysed the data from 1,478 respondents from England referred to treatment over a ten year period between 2007 and 2017. A second online survey in September 2017 was with carers of those with an eating disorder. This was accessed by 1,645 people. In-depth interviews were also held. This was complemented by information gathered from Freedom of Information requests to inpatient units and a study of NHS England expenditure.

To view more about the research see B-eat’s website.