Waiting times for children and young people with an eating disorder: England’s standard shows us the way

There’s been a quiet revolution in the treatment of eating disorders in England.

Waiting times used to be appalling

Until recently, so much about eating disorder treatment in England seemed to be lacking. Sure, there were centres of excellence, but reports from BEAT and from parents kept highlighting horrendous issues. These were mainly:

  • young people were waiting months to access treatment for an eating disorder
  • when they did get treatment, it was often sub-standard

Regarding waiting times, we now have a year’s worth of data (2016-17). I think they’re extraordinary and I’m asking you to spread the word, wherever you live on the world, because every country can take inspiration from it.

So how long are youngsters waiting for treatment now?

The chart below shows how 65% of young people are starting treatment within ONE WEEK of contacting the health service.

NHS England Access and Waiting Time Eating Disorders statistics URGENT cases 2016-17

One week from what? From “first contact with a designated
healthcare professional”. The clock starts when the community eating disorders service has received a referral or a self-referral. GPs are required to make the referral “as soon as” an eating disorder is first identified, by phone or electronically.

One reason people are accessing treatment so fast is that they can now refer themselves directly to the eating-disorder specialists. They don’t have to go through their GP, and they don’t go through a generalist mental health service (CAMHS).

So the treatment delivered isn’t the old-style incompetent mishmash that used to be the norm. Now England aims for evidence-based treatment, according to England’s NICE guidelines, to be delivered by a specialist community eating disorder service.

What made these remarkable improvements happen?

One week is the maximum waiting time set in England’s Access and Waiting Time Standard for children and young people with an eating disorder.

This amazing standard, which I summarise HERE, was launched in July 2015. It gives all services in England till 2020 to reach 95%. Less than two years in, we’re at 65%.Access and Waiting Time Standards for children and young people with an eating disorder - NHS England standard 2015

Why you should tell everyone about this

The Access and Waiting Time Standard is a terrifically useful model for the rest of the world. I’m in Scotland and I want something at least as good – and I want it to include adults too. The Standard was written by an excellent team of experts, it’s based on evidence, so the hard work has been done.

The standard launched a frenzy of training, recruitment and re-organisation among those treating child and adolescent eating disorders in England. It truly galvanised them into turning their services around. They have to show they are working towards the Standard, or they will get penalised financially. And for five years they are getting extra funds to manage the change.

It’s not perfect everywhere but I am convinced this Standard is radically improving eating disorder treatment.

Is the Standard a big deal?

I don’t have statistics for what was happening before the launch of the standard. The charity BEAT has for a long time been reporting how appalling the wait is, but their surveys haven’t particularly targeted children and adolescents. We know that things are really bad for adults.

So we don’t have before-and-after data to prove that the Standard has made a difference. However, speak to any clinician or parent in England, and you will hear how very slow and overstretched services used to be.

Waiting times are a life-and-death matter

The typical scenario all over the world is this: you worry that your child isn’t eating or thriving, so you speak to their doctor, and the doctor may advise to ‘wait and see’, and when eventually you get referred to a service that treats eating disorders, you may wait weeks or months for your first appointment. At this stage you may get a diagnosis, but you may wait more weeks or months for the treatment to begin.

By this time your child is very ill, and very hard to treat. They may need to spend a long time in hospital. Many of the adults who are so hard to treat, and those who have died, were once adolescents who waited far too long for treatment that may or may not have been any good.

Whereas with specialist treatment within a week, we can reverse the course of the illness relatively smoothly. The evidence is strong, and that’s why the government created the one-week standard.

What about waiting times for “routine” cases?

The Standard requires “routine” cases to begin treatment within four weeks. The data show that for 73% of people, that target is being met.

NHS England Access and Waiting Time Eating Disorders statistics ROUTINE cases 2016-17

 

Is it cynical to wonder if struggling health boards might massage their results by categorising some kids as “routine” cases when others would consider them “urgent”? Even so, having over 7 out of 10 kids getting treatment within 4 weeks is a huge improvement on what is happening in most of the world.

Are some youngsters failing to receive treatment?

Yes. For instance in Jan-March 2017 in England, in the “urgent” category there were:

  • 22 youngsters in the ‘urgent’ category, who had been waiting 4-12 weeks and still not got treatment
  • 13 youngsters had been waiting for more than 12 weeks and still not got treatment
  • for comparison, 171 youngsters were treated within the Standard’s one week

In the “routine” category, there were:

  • 123 youngsters who had been waiting 4-12 weeks and still not got treatment
  • 110 youngsters had been waiting for more than 12 weeks and still not got treatment
  • for comparison, 944 youngsters were treated within the Standard’s four weeks

 Where to next?

  • England needs to continue the progress. It has another 3 years to reach the one week or four week target.
  • Some services in England are still poor, with kids’ futures at risk. I hear from some of the parents, and their stories are awful. We need improvements across the board. The charity BEAT is using the same statistics as the ones I present here to campaign for improvements.
  • Everywhere in the world, we need similar standards. Learn from England. Do even better.
  • And everywhere in the world, we need similar standards for adult sufferers.

So spread the word, and get campaigning!

It shouldn’t be that hard if you can get the political will. In England, Nick Clegg, depute prime minister,  saw the Standard through from start to finish. The process of gathering a roomful of experts, putting pen to paper and finalising the Standard took a total of… five weeks!

Feel free to copy and send out the image below.

Eating disorders waiting time for treatment

 

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