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Delaying for years, denied for months

Today, we’ve unveiled new research that examines the long delays people experience in waiting for treatment, and the impact that this can have on those suffering from eating disorders and their families.

Our extensive research project included a survey of people with personal experience of seeking treatment, a survey of carers and their experiences, Freedom of Information requests to NHS mental health Trusts across the country, and interviews with 20 people who have either had or cared for someone who has had an eating disorder. The results showed that the damage caused by long delays in getting treatment is devastating and widespread, affecting every aspect of people’s lives.

We know that the earlier someone gets treatment for an eating disorder, the better their chance of having a full and sustained recovery. Yet we found that on average, people were waiting for three-and-a-half years between their symptoms first emerging and treatment starting. There’s evidence to suggest that after around three years, it becomes considerably harder to treat anorexia in particular. It’s clear that we must work to dramatically shorten this timeframe if we’re to ensure that treatment is as effective as possible.

By far the longest gap came between symptoms first emerging and people realising that their symptoms may be due to an eating disorder. Almost as much time went by between this realisation and people taking the step to ask for help from their GP. 

Beat Chief Executive Andrew Radford said: “This research has shed new light on where the delays in finding treatment lie. Eating disorders are serious mental illnesses and when people are treated within three years of falling ill, they are much more likely to have a quick and sustained recovery. The news that on average there is a delay of three-and-a-half years after symptoms emerging is very concerning.”

In 2015, the Government introduced targets to reduce the time children in England spend waiting between being referred and starting treatment for eating disorders, alongside new funding of £30 million a year. This is a good start and an important first step. But our findings show that the six-month gap people experienced between first visiting their GP and beginning treatment, while still far too long and in urgent need of addressing, is a small proportion of the overall wait. Much more is needed to encourage people to get help faster. We are therefore calling on the Government to build on its progress to date by promoting the importance of seeking help as soon as possible.

“My eating disorder symptoms started in September 2009, but it wasn’t until March 2015 that I went to my GP to ask for treatment when my friends started to get really worried about my health. I told the GP I thought I had an eating disorder, but they said that there was no point referring me because I wouldn’t get an appointment for four weeks – there was only eight weeks left of term. I had to start the referral process again in September 2015 once I had a permanent address, and it wasn’t until April 2016 when I started treatment.

“Not accessing treatment straight away definitely had an impact on my eating disorder – my behaviours were habitual and it was really difficult to fight the thoughts that had become so ingrained. I was ‘functioning’ – my grades were still good and no one had shown any concern about my behaviours. It reinforced the idea that I had that I wasn’t really ill and didn’t deserve help. The response from my GP was also really difficult to take in; I felt like no one really cared and I felt hopeless and disheartened knowing I had such a big wait ahead of me.” Anonymous

This evening, we’ll be launching our research in parliament, and asking Government to act on our findings. Read our report here to find out more about what our research tells us about the emotional and financial impact on sufferers and families and the cost to the NHS, as well as what steps Beat is proposing to bring about positive change for those affected.

We’re also asking you to get involved – write to your MP and ask them to support initiatives that will help people to access treatment early. Together, we can work towards ending the pain and suffering of eating disorders.

“I want people to know that it doesn’t have to get that serious before you reach out for treatment. I could have benefited from some professional help in the early stages but because I ‘managed’ it in my day-to-day life it developed into something life-threatening. Even when I first began treatment I didn’t truly believe I had anorexia, just that I had some ‘bad habits’ that were a bit out of hand. I wish I acknowledged it as a problem earlier so I didn’t have to miss out on the things I did.” Hannah