Last updated on October 6th, 2021
Covid and lockdowns have led to what is possibly a four-fold increase in eating disorder referrals. It's been heartbreaking for all involved. Services that could begin excellent treatment within 1 week have had to set up triage and waiting lists. So as you read what follows, please know it is still a 'standard' but we cannot possibly expect Trusts to comply with these for a while.
What can you do if you've been made to wait a very long time?
Keep informing the team of symptoms and behaviours so they can keep prioritising. Use Accident and Emergency. Your GP should monitor your child's physical health. Unless the GP considers there's a risk of 'refeeding syndrome', start the treatment the way any NHS team would tell you to start: regular meals, regain weight. That's what all my resources are for.
Practically overnight, in the summer of 2015, England imposed and funded ambitious standards for the treatment of eating disorders in children and adolescents.
Things really changed, and that's why I think this was a model which the rest of the world should pay attention to. Standards really did improve, overall. There's statistics to back this up. But also, I am now more likely to hear from parents in England where treatment has gone roughly according to best practice, whereas before every second story was a disaster.
Now, some places are still terrible, while most are infinitely better.
Early intervention matters
The day I went to the GP to say that I was terrified that my daughter had anorexia, things happened pretty fast. The doctor recognised the urgency even though my daughter was not particularly underweight, and she sent off a referral to child and adolescent mental health services (CAMHS) that very day.
So far so wonderful. But the address for CAMHS had changed and the referral letter didn't get there. That lost us one week. Next I discovered that the CAMHS team read and prioritised referrals just once a week, and that day had just passed. I also learned that if my daughter was not considered high priority the waiting time was … two years! Every other day I begged the receptionist to please tell the clinicians of my daughter's rapid deterioration. Waiting without information was agony.
Compared to most people, we were incredibly well served. After a few days of me pestering the receptionist, we got an appointment. Many eating-disorder stories (see for instance Bev Mattock's book 'When anorexia came to visit') are a catalogue of delays and incompetence.
Hurray for England's new "commissioning guide"
A fair share of the horror stories I hear come from England. So how wonderful is it that on 3 August 2015 NHS England issued the most well-informed, high-standard instructions we could wish for. And no wonder. It was written by some of our top experts. What is remarkable is that expertise from researchers and clinicians is actually becoming government policy. It's all in a 102-page document entitled "Access and Waiting Time Standard for Children and Young People with an Eating Disorder. Commissioning Guide" which I'll attempt to summarise for you here.
(Update: we now have some results on the 'waiting time' bit, which I've summarised for you here.)
Big changes for England
It is the job of health service commissioners (the officers responsible for providing and regulating the health services for the local population they serve) to make it all happen in every area of England.
First of all, there's MONEY behind it
Nick Clegg, in our last government, had already announced £150 million going into improving the treatment of children and young people’s with eating disorders. The £150m was to be rolled over a 5 year period. My pals in the eating disorder world mostly went, "Oh yeah, like that's going to happen!" Well, it is happening now. My understanding is that minister Norman Lamb was the behind-the-scenes architect of the standard, and for that he has my gratitude.
This year, the first £30 million is being pumped in.
" It is expected that additional funding will be used to build either new
teams and services, or be used to build upon existing community based services that are
either already compliant or where the funding is being used to ensure compliance."
Next, commissioners actually have to do this (and maybe you can help them?)
The document is aimed at health service commissioners. They now have to develop a "Transformation Plan" for their area, in collaboration with – ooh – children and their families, among others! So friends, given how much you care about all this, and how much expertise you've reluctantly gathered about eating disorders, how about you put yourself forward to be consulted?
Early intervention: one week for "urgent" cases, and four weeks max for "routine"
By 2020, children and young people referred for an assessment or treatment of an eating disorder must access treatment within a maximum of four weeks (for "routine" cases), and one week for "urgent" cases.
Health services are not expected to achieve the waiting time standard right away, but each year there will be a tightening of the screw. Timings will be documented and monitored.
" The CLOCK STARTS when the request for an eating disorder assessment is received and logged [by the Community Eating Disorder Service], regardless of the agency making the request.
Note that the clock does not stop until treatment is delivered."
The first year of results is now available. See my summary here.
What's "urgent" and what's "routine"? And is it possible that GPs might hold things back? Here's how it works.
If you've self-referred to the Community Eating Disorders Service, the clock starts right away. The same if "school nurses or medical, pastoral or other members of staff" in educational settings have decided to refer a child (they can do so, while informing the family, in spite of the family not sharing the same level of concern).
If you've first gone to a GP, they have to "contact the eating disorder service via telephone or electronically following discussion with the child or young person and their parents or carers, as soon as an eating disorder is first identified. The [community eating disorder service] should log the date of referral and the CLOCK STARTS at this time." So no snail-mail. I imagine that there continues to be a weakness in the system, if the GP assesses someone to not have an eating disorder, when really it's the specialists who are best placed to work that out. Parents, remember that the GP's opinion need not be an obstacle, as you can self-refer.
As soon as the eating disorders service has received a referral, they "must classify the urgency of the case within 24 hours". And to do that: "All require telephone or in-person contact to be made with the child or young person and the parent or carer on the same day to clarify risk". This is where they classify the risk as "urgent" or "routine".
"If the child or young person is deemed to be at high risk, i.e. in need of urgent medical stabilisation or at high psychiatric risk", the service "must arrange an in person assessment within 24 hours."
"If the pathway has been classified as urgent, the GP should be notified and the child or young person should be seen by the [eating disorder service] within 5 days from the clock starting"
"If the pathway has been classified as routine and the child or young person has not seen their GP within the past 2 weeks, they should be directed to their GP for a consultation within the next 2 days. The [eating disorder service] should liaise with the GP by day 5 following the clock starting."
The best treatment we currently have
From 2016, " Clinicians will need to continue to offer NICE-concordant treatment."
(NICE is the UK body that sets the standards on treatments, based on research and cost-effectiveness.)
This is actually not new. The NICE guidelines should have been getting followed ever since they were published. I hope that what is new is that compliance will be monitored.
And since May 2017 we have some great, revised NICE guidelines for eating disorders.
So what therapy will England have to offer? Here goes:
"Treatment should include specialised community family interventions for anorexia nervosa […] In addition, there is emerging evidence to suggest that a specifically adapted form of CBT may be effective in anorexia nervosa in young people ."
"… and specifically adapted forms of CBT for bulimia nervosa, in particular CBT-E. Both CBT and family interventions for adolescent bulimia nervosa have some support."
I explain these two types of interventions (special family therapy and forms of CBT adapted for eating disorders) here.
This is major stuff. Why? Because up to now, well-meaning CAMHS staff have offered whatever approach seemed right to them. Even if there was no evidence it worked. At age 10-11, my own daughter was given one-to-one talk therapy (mostly psychodynamic) that, unsurprisingly, went nowhere. She also got CBT, which sounds good, except that for eating disorders it's a special form of CBT you need – and that is only valid for a specific group of older teens and adults.
I really hope that everyone will understand "specialised community family interventions" to refer to family therapy as developed and tested by Dare, Eisler and others in the UK (Eisler and some of his colleagues are authors of the document), and Lock, Le Grange and others in the US. I'm hoping that it's understood that we're not talking about family therapy in general. Our updated NICE guidelines should make it clear. I'm hoping that services will choose to get their training either from Lock and Le Grange's Family-Based Treatment model (with or without investing in the costs of certification), or from Eisler's team at the child and adolescent eating disorder service of the Maudsley hospital. Currently, I know of eating disorders services going for one or both of these routes, and that's just great.
Multi-disciplinary teams specialised in eating disorders – not generalists
I have a collection of accounts from parents whose children experienced truly awful care in the hands of mental health clinicians. How is it possible that a child with anorexia can be told, 'It's okay if you don’t want to eat high-calorie foods'? Sometimes parents find the 'therapy' so deeply harmful that they resort to their own DIY form of family-based treatment.
The CAMHS team who first saw my daughter did many good things, but they were dealing with kids with autism and anxiety or depression — anorexia was just one of their topics. They didn't know that there was stuff they didn't know. My daughter continued to deteriorate and ended up in hospital for eleven months. Then we got luckier than most people in this country: we got family-based treatment from Scotland's experts, and our daughter was on the road to recovery.
There's a growing view that generic mental health professionals cannot treat eating disorders as well as those who have specialised. So I'm whooping and cheering as I read the document's detailed requirements for the 'community-based eating disorder service for children and young people' (CEDS-CYP).
"The most cost-effective treatment of anorexia nervosa in children and young people is
reported to be delivered by a community-based eating disorder service as opposed to
generic CAMHS […], yet these are not uniformly available throughout the
Commissioners will have to make sure the service is sufficiently well staffed, trained, supervised, to deliver to target. The multi-disciplinary team will include:
"staff trained in the delivery of evidence-based psychological interventions for eating disorders (to include CBT/CBT-E and targeted family interventions)"
and also staff trained to supervisory level in the same approaches.
That sounds to me like quality.
Nearly anyone (including the parents) can now refer a young person to the specialists
GPs are no longer the gatekeepers to specialist services. Sufferers or their parents can now self-refer. I am whooping with joy. I have heard so many stories where a child has become terribly ill because a GP disregards the parents' worries and waits for the cancer (I mean, the eating disorder) to get worse before it's considered worth treating.
"… enable direct access to community eating disorder treatment through self-referral and from primary care services (for example, GPs, schools, colleges and voluntary sector services)."
You'll be able to check out how well this is done in your area:
" Each service should have clear, accessible contact details on a website, which are
easy to find via main search engines, with clear instructions in appropriate languages on
how to call the service, send an email or complete an online self-referral form. The referral
should be logged, and the CLOCK STARTS at this time."
So let me make this clear. Parents in England: your health service now has to change their systems fast, so that you can refer your child directly to the eating disorder service. And as soon as you contact the service, the clock starts: treatment must start within 1 week or maximum 4 weeks, depending on whether it's "urgent" or "routine".
A 7-day service
The community eating disorder service "should have a 7 day week service as their goal".
Hospitalisation where needed
" Inpatient admission should be considered where there is high or moderate physical risk"
On the other hand, the priority is treatment within the community (which means, mostly, at home).
"Where severity is high and risk considered manageable in the community, NICE-concordant intensive community (to include home treatment) or day treatment care
should be offered by the CEDS-CYP [community-based eating disorder services for children and young people]."
Ignorance is no excuse
Not only are specialists to start treating young people fast, it's now their job to make sure everyone knows of their service:
"The CEDS-CYP [community-based eating disorder services for children and young people] must ensure referral pathways are known by all local relevant professional groups likely to come in contact with a child or young person who may have an eating disorder. This will include GPs and primary care workers, paediatric staff, CAMHS teams, schools and colleges, and other relevant professionals working with children and young people."
Is this as exciting as I think it is?
I hope my brief take on this NHS England commissioning guide has got you as excited as I am. There's plenty more – the guide is 102 pages. I'm editing this post in August 2019 and the statistics are really good, as well as much of what I hear from many parents, though the old postcode lottery still does exist, sadly. By 2020, this post should look quaintly antiquated to families in England. We'll talk about the bad old times.
What about the rest of the world? The UK has the advantage of having a national health service, so standards can be set, as is the case here, for the whole of England. Some countries have it harder — there are no state-wide standards, and each area, each health centre or even each doctor, goes about treating eating disorder their own way. Standards only improve if individual care providers are good at talking to each other.
To some extent, this is what is happening in Scotland, I think. More and more clinicians who treat eating disorders voluntarily attend training (James Lock has been travelling over to train in FBT), they network, and there's now a voluntary steering group, so standards go up… but it's still a postcode lottery. Two of the worst stories I have are from Scotland.
Does your country already do better? If so, would you post for other readers here?
Or can the NHS England document serve as a model for where you are?
Also now: inpatient care, and intensive day care
In August 2019, the NHS published an 'extension' that gives guidance for the inpatient and intensive day care of young people with an eating disorder. It's called:
And what about adults suffering from an eating disorder?
This document is about children and adolescents. The new standards will greatly reduce the risk of them becoming long-term adult sufferers. But what about those struggling to get treatment, or even to get diagnosis, as adults? Services for over-18s hugely need improving. Some eating disorders units may re-organise to cater for all ages, and perhaps that will benefit everyone. On the other hand, the treatment approach (and the parent's role) is very different if the patient is a newly diagnosed teen, or an adult who has been suffering for many years. So let us remain vigilant.
Is there any work on producing an Access and Waiting time standard for adults? Apparently not. I am told there is not the political will which made the standard for children and adolescents happen. But as I update this in August 2019 it looks like there may be some work on it after all.
There is guidance (without anything about waiting times) for adults, published August 2019. It's called:
Achieving these standards: see the example of one trust
Watch my interview of Lydia Goodrum and Dr Sarah Maxwell, of the Norfolk and Suffolk NHS Foundation Trust. It's 45 minutes, so shorter than going to a conference (!) If you only have a few minutes, there's a short summary early on. And there are menu links all along the top.
The results shortly after the standard came into place
In 2016-17, when health services had hardly had any time to get themselves organised for this revolution, already 65% of youngsters in the 'urgent' category were starting treatment within one week. That's a remarkable fast turnaround for a health service that was failing so many of our children. A model for other countries?
I give you an overview of this and more recent results here. Basically, compliance has kept on rising so that by early 2019 we were at around 80%
Feel free to use the chart above and the image below if it helps you campaign for improvements in your own country.