The Eating Disorder Bed Crisis
1.25 million people in the UK are estimated to have an eating disorder.
Waiting lists for eating disorder beds in the UK are leaving many families at breaking point. The UK eating disorder charity, BEAT, reports that the current waiting times are up to two years.
Eating disorders are severe mental illnesses. They often remain unrecognised for months or even years and are frequently misunderstood and devastating for those who are suffering – along with their families.
Eating disorder treatment is not about reversing a ‘diet’, pulling your socks up or being obsessed with the latest trend. Eating disorders are serious, in many cases disabling and in some cases fatal.
We look at the current treatment waiting times in the UK and the options available to parents to circumvent long waits or refusals from eating disorder service providers.
Waiting Times for Inpatient Eating Disorder Treatment in the UK
Eating disorders have far-reaching medical, psychological, life and relationship consequences.
Despite the often damaging long-term effects and poor prognosis, those suffering from eating disorders often do not receive standard treatment quickly enough or when they most need it. Sometimes, they don’t receive treatment at all.
Residential and inpatient services for teenagers and young adults diagnosed with an eating disorder in the UK are relatively small in number. During the past two years, the demand for immediate inpatient admissions for young people with eating disorders has more than quadrupled. Many young people and their families have been devastated by the news of long waiting lists and minimal treatment options for those with urgent needs across the UK.
A Perfect Storm
Dr Ayton of The Royal College of Psychiatrists, Eating Disorder Faculty, recently commented on the increasingly challenging situation. She reported that ‘increased demand, reduced capacity and chronic underfunding’ had resulted in the national bed crisis.
As waiting lists and pressure on bed availability increases, teenagers and young adults with sustained complications and complex medical needs have found themselves being admitted to general wards or treated at home.
Non-specialist admissions can cause additional pressures on overburdened families, and delays in treatment can and do have catastrophic consequences. Eating disorders have one of the highest rates of mortality across all psychiatric diagnoses.
BMI and Admission Rates
Places in specialist long-term eating disorder programs in the UK are incredibly scarce. Crisis admissions, when available, are often to stabilise any medical crisis, with little psychological intervention based in residential settings. That means mental illness and emotion regulation go unaddressed.
As pressure on bed allocation increases, there have been reports of BMI (Body Mass Index) being used as a criterion for the admission of young people to eating disorder programs in the UK. Whilst BMI is still used as a parameter in some treatment facilities, it is not a valid sole or lone parameter for the basis of admission. Young people can very often appear to have a healthy weight, and be in a ‘normal’ or ‘low to normal’ BMI or body shape whilst remaining in a seriously unwell position. Physical symptoms may not show up for a long period after someone becomes ill, even in the most common eating disorders. The concept of being refused treatment based on BMI is heartbreaking.
Many young people challenged by incredibly complex eating disorders known as binge eating disorder and bulimia nervosa find themselves in a similar position. Often overlooked in terms of treatment, teenagers and young people with signs and symptoms of binge eating disorder require the same specialist interventions and access to services as other documented eating disorders and co-occurring conditions.
Length of Admission for Anorexia Nervosa
While the global average length of stay for a crisis admission for those with anorexia nervosa varies greatly, all current research suggests that longer and more extensive support correlates to sustained recovery and fewer significant lapses.
30% of young people diagnosed with anorexia nervosa in the UK will require stays of more than 90 days in order to stabilise in accordance with The National Institute of Clinical Excellence’s current guidelines. Very few are afforded this option.
Other countries, for example, Australia, have longer and more robust guidelines on the management of eating disorders with a requirement for an extensive period of stable weight and psychological wellness before moving from inpatient programs to step-down care in secondary care or outpatient services.
Stabilisation and weight restoration play an important part in the early stages of treatment. In fact, these are essential aspects of recovery. Progress can seem slow in the early days as the body has often been in crisis for a considerable amount of time before young people are safely in a treatment program.
Early Intervention
Early intervention is considered to be treatment within the first three years of onset. In the UK, the average wait time from recognising the signs and symptoms of an eating disorder to being placed on a waiting list is 3.5 years.
That’s an average of 182 weeks of waiting.
Early intervention in the treatment of eating disorders significantly improves both the rate of full recovery and the effect of any small future lapses. Delays in treatment are not only harmful in the present but could pose a risk for long-term severe and enduring mental health problems, increased mortality rates and decreased long-term recovery rates.
Severe and Enduring Eating Disorders
Eating disorders can prompt the need for immediate medical intervention. Complications increase, along with the physical and mental health risks in those who cannot access treatment within three years from the onset of an eating disorder.
Severe and enduring eating disorders are more complex to treat, involve more risk and have poorer outcomes.
Binge eating disorder may involve a person losing control of their eating, and they may have repeated episodes of eating large amounts of food. As a result, they may suffer from being overweight or obese, which leads to a range of physical and mental health conditions.
Bulimia nervosa also involves losing control over how much a person eats, but includes taking drastic action to prevent weight gain. The binge is usually followed by forced vomiting, the excessive use of laxatives, or excessive exercise. This can lead to a chronically inflamed and sore throat, decaying teeth from exposure to stomach acid when vomiting, gastrointestinal problems, and severe dehydration. An electrolyte imbalance can also lead to stroke or heart problems.
People suffering from anorexia nervosa may suffer dramatic weight loss due to undernourishment and the inability to control purging or excessive exercise. They may suffer from the relentless pursuit of thinness and intense fear of gaining weight. This is because of a distorted body image or self-image that is heavily influenced by perceptions of body weight and shape.
People suffering from anorexia are at risk of dying from medical complications that arise from starvation. They may be in denial of the seriousness of their low body weight and, over time, become unable to gain weight. The severe or life-threatening physical health problems that occur with anorexia can become a medical emergency, and they also run a higher risk of suicide.
Overseas Treatment for Eating Disorders
‘Destination Eating Disorder Treatment’ sounds rather glamorous or perhaps a choice for the children of the select few. In fact, in recent years, overseas eating disorder treatment for teenagers and young adults has become an essential addition to the treatment options available to families in the UK and across Europe.
With few programs available for this age group, beds in the private sector are limited, and long-term admissions often extend waiting times. Children and teenagers should be placed in facilities that are designed for their age group and not in adult programs, inpatient treatment programs focusing on addiction or traditional rehabs. Age-appropriate, eating disorder-specific treatment is not only preferable, but it is also essential.
When parents, families and young people can see all the options available for treatment, many decide to travel overseas to dedicated international facilities where they can receive specialist eating disorder care.
Caring at Home or Overseas Admissions
Parents and families frequently describe the exhaustion and stress that living with a young person with an eating disorder can bring. Many parents have taken a year or more out of their careers or hired full-time nursing teams or an ED Recovery Coach to assist with teenagers and young adults who are unwell, require NG tube feeding or observations around mealtimes.
Families may consider a home care team for eating disorder treatment in London or travel to several international locations. ED Recovery Coaches can be incredibly useful for families who would benefit from around-the-clock support and care.
International treatment options are another valuable route for families to consider. The benefit of a community of peers, access to medical and clinical facilities and supported education (with an extended GAP year experience) can feel like a welcome breath of fresh air. Young people and their families often feel a sense of relief as treatment is approached in beautiful locations around the world, with an opportunity to make friends for life.
Eating disorders are very lonely and isolating. It is also common for people to experience other common mental health conditions alongside eating disorders. Anxiety, fear and desperation often result in young people feeling withdrawn. The community that eating disorder treatment overseas can bring can be life-changing.
Treatment overseas can feel daunting for parents, particularly in times when travel is more challenging to organise. It is really important for parents to feel confident with their choice of treatment and to know that it fits their needs and personal circumstances.
A family-based treatment program will ensure you feel included, and supported and have open communication channels with the treatment team. Parents and family members who are confident, and take time out to heal themselves, make the very best allies along the treatment journey. Family therapy is essential as it can help parents to understand the complexities of eating disorders and how families can support their loved ones on the return home.
Self-worth and self-confidence can be at an all-time low in the weeks and months leading up to admission. The eating disorder often has a large and powerful voice that can be difficult for young people to challenge alone. Having a buddy or two and tackling recovery with a group that you are proud to be part of, in a country far away from the triggers of your home environment or school, can make a huge difference. It is an option that puts parents back in control of the treatment that their children receive.
The Wave Clinic, in Kuala Lumpur, is one of the few Eating Disorder Treatment Programs dedicated to the specific needs of teenagers and young adults. As a centre of excellence and trauma-focused provider, The Wave is Asia’s only Eating Disorder Treatment Program. With experience treating eating disorders, they do not only develop a plan to instil healthy eating habits. Instead, they go beyond physical health, helping people to deal with the underlying psychological causes. Treating any co-occurring conditions or problems is also part of the treatment plan. In this way, healthy eating patterns can be maintained in everyday life even after treatment is completed.
Health professionals may offer medical care or talking treatments in the form of private therapy or individual therapy. Cognitive behavioural therapy may be offered in weekly sessions to help cope with underlying issues and change distorted thought patterns. In group therapy, including dialectical behavior therapy (DBT), sharing and learning from others may provide insight and peer support.
The Wave Clinic welcomes over 60% of young people into residential treatment from the UK. Combining education, medical treatment and volunteer programs, The Wave has become a firm favourite with families looking for the very best in eating disorder care.
Travelling to Malaysia for Treatment
Travel to Malaysia is relatively straightforward. Our modern, luxurious facilities are just a 20-minute drive from the Kuala Lumpur International Airport and are set in a secure location.
International admissions are subject to a medical assessment. Assessments are currently carried out online, with our Eating Disorder Specialist Consultant Psychiatrist and Psychotherapist. Assessments that meet the criteria for admission to a specialist facility are submitted on medical grounds and have been granted in as little as 24 hours. Whilst admissions must comply with quarantine and any standard operating procedures, the process is well-practised and comfortable.
Fiona Yassin is the International Clinical Director at The Wave Clinic in Kuala Lumpur, working with teenagers, young adults and their families. Fiona is a UK registered Psychotherapist and Supervisor of Clinicians. EMDR-trained and a member of EMDRIA, Fiona recognises the role of complex trauma in eating disorders and is currently developing Trauma-Focused Eating Disorder Services in Asia and the Middle East. Fiona is an International Chapter Member of IAEDP, CBT-E, and RO-DBT trained. Fiona is also a Fellow of APPCH, and she loves her cats 🙂
