What is the reality of eating disorder treatment?

Dr. Lynne Green speaks to Nishat from Open Access Government about NHS eating disorder treatment, what to do if someone is suffering, and how social media has changed the landscape

Eating disorders (ED) are devastating illnesses that many people experience in some way: whether they go through it, their sibling does or someone they know at work or school is rumoured to be suffering.

There are photos on social media that show impossible bodies, and no-one to disprove them.

The internet even has multiple ‘communities’ in which ED sufferers police one another’s diets and ideas which purposefully trade images of unhealthily starved bodies, which are colloquially referred to as ‘thinspo’ aka the ‘inspiration’ to be ‘thin’. In light of the Online Harms paper, the regulatory efforts of big sites like Tumblr and Facebook are called into question.

Unlike being diagnosed with a different disorder, an ED diagnosed individual can face an immense obstacle in the refusal to acknowledge a problem. Some sufferers are aware that their health is being damaged but resist treatment.

They can think that the cure is in the level of control they have over their damage – the balancing act that is so private and isolated becomes everything. Others simply can’t see their ongoing disorder as a problem.

“I’m not skinny enough yet. I can’t stop until I have solved all my problems. I can’t stop yet. All my problems will still be here if I do.”

This relentless cognitive process is difficult to change without collaboration from the individual who has the ED. And collaboration is hard but possible.

How do we get there?

We sat down with a clinical psychologist with 20 years’ NHS experience to discuss it.

Dr. Lynne Green also has a passion for helping those with eating disorders. She shares her insight as Clinical Director of XenZone: longest-standing digital mental health services provider. Last year, around 100,000 new users joined the XenZone Kooth community, with more than 1,700 young people logging on every day.

Similarly to our conversation with Henry Jones, anonymity emerged as a crucial factor in making treatment a possibility.

1. To begin with, let’s discuss the most diagnosed demographic: 13-17-year-old girls. What do you believe is the common factor for those diagnosed with eating disorders at this age?

Eating disorders do most commonly affect girls between the ages of 13 and 17. NHS Digital figures also recently revealed that hospital admissions for life-threatening eating disorders almost doubled between 2010 and 2017- driven by demand from teenage girls and young women. Admissions for anorexia increased among females under the age of 19 by 193% during that period.

This group has several common factors – the most important being: they are going through puberty, so their bodies are changing; they are female, so our culture particularly subjects them to sexualised and unrealistic body images that they may not identify with; and they are coming of age in an increasingly digital world, so it is difficult for them to create a safe space that is reflective of real bodies and lifestyles.

our culture particularly subjects them to sexualised and unrealistic body images

Only 25% of those diagnosed with anorexia nervosa, for example, are male. However, fatality rates among males with anorexia nervosa are higher than among women, as eating disorders are associated with females and consequently is not diagnosed in men. It’s important to consider and recognise manifestations of eating disorders across the gender spectrum – and to reduce any stigma associated with males seeking help for what may be perceived as a primarily ‘female’ illness.

2. How has treatment and perspective evolved throughout the time of your practice? What does the future of treatment look like to you?

During my 20 years as a clinical psychologist, largely within the NHS, treatment has advanced a great deal. One particular milestone was the Government’s contribution of £30 million annual funding for dedicated eating disorder services across England, starting in 2014, to support NHS services to meet referral to treat guidelines (within one week for urgent cases and four weeks for non-urgent cases) by 2020. This is paramount, as early treatment is a good indicator of faster recovery.

There remain, however, two key challenges: workforce shortfall (13% of national shortage in mental health posts nationally, as highlighted by the NHS Long Term Plan) and a failure to sufficiently involve children and young people in the design of their treatment. Regarding treatment co-design, eating disorders present a particularly difficult challenge because – unlike almost any other mental or physical condition – those suffering often do not want to seek help.

They attribute an enormous amount of value to the control

They attribute an enormous amount of value to the control that their eating disorder affords them over their body. For a child suffering with an eating disorder to relinquish control and develop a genuine and lasting desire to recover, they cannot simply be subjected to treatment.

They must be partners in the design and delivery of that treatment. A digital mode of delivery, such as the through the Kooth service, can help the NHS to overcome both of these challenges.

3. What other mental health issues can come up in relation to an eating disorder?

Those suffering with an eating disorder can often experience other mental health conditions, like anxiety, depression and obsessive compulsive disorders. Eating disorders can also have a significant impact on physical health, which seems like an obvious thing to point out, but the severity of this impact is often overlooked. Early on, someone suffering with an eating disorder may experience aches, pains and tiredness.

As the duration of nutritional deprivation extends, symptoms can become more pronounced – such as dehydration and amenorrhea (missed menstrual periods). Then, as vital organs are put under pressure, that person may experience irregular heartbeats and even a heart attack.

This progression can take two to three weeks, which highlights the need for speedy treatment. Hospitalisation is more likely to be required as symptoms progress, as treatment has both psychological and physical components.

4. What advice would you give to friends and family who want to help someone with an eating disorder?

Seek help early. Friends and family are often worried about the child or young person ‘turning against them’, should they try to seek treatment with or on behalf of them. Sadly, this is a storm that they have to weather. The sooner that person receives help, the more likely they are to recover – and avoid the more severe mental and physical health symptoms.

Friends and family are often worried about the child or young person ‘turning against them’

As a digital service provider, our mode of delivery tends to reach the harder to reach. Children and young people with mental health challenges, including eating difficulties, can access our counsellors and therapists remotely and anonymously. We help build confidence and trust, so that they can progress to face-to-face treatment – without feeling ‘coerced’. Kooth, our digital mental health service for children and young people, is available free on the NHS in over 50% of CCGs in England and Wales.

There are also helplines that you can call, such as Beat. Alternatively, if these services aren’t available in your area or if the child or young person would like face-to-face treatment from the outset, please seek advice or a referral from your GP. In the case of an emergency, always call 999.

5. What do you believe the role of the internet is, both in the exacerbation and treatment of eating disorders?

If you had asked me that question a few years ago, I would have answered that social media plays a very small contributing role in eating disorders. However, increasingly I am seeing – through my clinical work – that social media certainly plays a role in maintaining eating disorders, and often is a contributing factor to the development of an eating disorder in the first instance.

that feeling of ‘not being good enough’ and leave them susceptible to developing an eating disorder

This is particularly true for children and young people with low self-esteem, for whom the pervasiveness of unrealistic lifestyle and body images can compound that feeling of ‘not being good enough’ and leave them susceptible to developing an eating disorder. Eating disorders engender high levels of comparison – to self and others – and an important aspect of treatment is helping an individual to develop realistic perceptions and standards. Digital ubiquity and the curated images found on social media act as a real barrier to progression through this phase of the treatment.

Fortunately, digital ubiquity also enables a highly effective mode of treatment for eating disorders, as digital services deliver earlier and broader access. Very often, children who access Kooth from home or school (to test out ideas and explore treatment options) are not children who would voluntarily engage with face-to-face treatment. Digital also uniquely lends itself to enhancing aspects of eating disorder treatment, like personalising a treatment plan based on real-time data.

6. Something that is less discussed is what treatment is available for those who are in recovery. When someone has made it to a “healthy” weight, the disordered thoughts remain. What can they do?

Recovery is a journey and it’s different for each child and young person. Research suggests that of those who suffer from anorexia nervosa, for example, 46% will fully recover, 33% will improve and 20% will remain chronically ill.

For the child or young person who has been receiving treatment, having regular touchpoints with the positive lessons from their treatment is important. For some, this might mean re-reading the literature given to them by a therapist. For Kooth users, it may mean dropping into the community forum to reflect on the progress they’ve made and discuss any fears they may have with peers and experts.

 

maybe if people didn’t sterotype eating disorders as starving skinny girls we wouldn’t feel invalid for eating something at all because an eating disorder is the MENTAL relationship you have with food and NOT how much you eat

— ً (@cupidlbs) April 24, 2019

7. In your opinion, what does the NHS need to do to address the rising levels of Eating Disorders in the UK?

It is difficult to say with absolute certainty that levels of eating disorders are rising in the UK. We can see that there are increasing numbers of people accessing NHS services, which is true for our services too: there was a 300% increase of logins to the Kooth service between 2015 and 2018; and across the year 2017 – 2018 a young person logged into Kooth on average every 40 seconds.

Increasing service demand could be due to rising levels of eating disorders, but it could instead be due to successful publicity campaigns meeting objectives of increasing awareness and encouraging more people to seek help. Either way, the NHS does need to address the growing pressure on services and they can’t do that alone.

The Department of Health and Social Care recognises the role of digital – as a cause and cure – in health and social care challenges, which is really positive. Health Secretary Matt Hancock’s work in establishing NHSX to bring digital into the heart of the department, and questioning the social media giants – highlighting the lack of proper self-regulation when it comes to content that is harmful for children – is important.

We know it is possible to create positive spaces for children and young people online – XenZone has been around for longer than Facebook, and our Kooth content is moderated before it goes live, with most articles being written by young people themselves.

We must all work together – health professionals, providers, commissioners, Government, private sector players, public authorities and beyond – to progress.

Eating disorders are not only clinical, they are societal issues.