Lorna Collins was diagnosed with anorexia at age 19. She has since been admitted to the hospital at least 20 times.
After nearly half her bodyweight, the 2001 incident was her first. She was now at high risk for heart disease.
Staff worked to bring her up to a healthier weight before discharging her — and so began a depressing pattern.
“As soon I returned home, I stopped eating and started losing weight,” she remembers. The process of taking her back to hospital in order to gain weight and maintain her life would continue.
Lorna (40) recalls that doctors attempted to understand her but all they did was put me under sedation. She is now a Research Fellow at University College London.
“I could not control everything in my life, so I decided to try and control what I ate and how my body looked.
“Each admission was the same, with only one session of group therapy per week. We’d all sit around in circles waiting for somebody to speak.
Lorna Collins (pictured), has been admitted for anorexia at least twenty times since she was diagnosed with the disease at 19 years old.
Lorna, although she had gained a few pounds in weight, would still be suffering from the same issues. “I hated my overweight body so much,” she said.
Many people are familiar with this revolving door approach to treatment.
An estimated 1.25 million UK residents suffer from an eating disorder. More than 266,000 people have anorexia. This is a condition that causes extreme fear and anxiety about gaining weight.
Anorexics can be described as perfectionists that lack confidence in themselves or self-esteem. They may become obsessed with how they look and their weight, according to The Mental Health Foundation.
There may be many more people who are struggling to access treatment.
Last week Saffron Cordery, NHS Providers deputy chief executive, told a Health Foundation panel that while the focus now is on the pressures faced by A&E and ambulance services, ‘we are seeing really long waits for services to treat mental health’.
Her previous warnings stated that demand for treatments for eating disorders has risen during the pandemic and increased by almost 50%.
The Royal College of Psychiatrists demanded emergency funding for treatment of eating disorders in April. They warned that the system was at its breaking point.
The claim states that severely ill patients have to be tube fed at their homes because there is not enough specialist care and beds.
Dr Agnes Ayton is the chair of Eating Disorders Faculty of the Royal College of Psychiatrists. She says since the outbreak of the pandemic clinicians have reported an increase in patients who need hospitalisation for severe malnutrition.
This includes brain dysfunction and heart and liver issues, osteoporosis, and stunted growth for younger patients.
August was a warning from the College that there had been a quadruple increase in the waiting list for treatment of eating disorders among under-19s.
Lorna (picutred) would leave hospital having put on a few pounds but with the same underlying problems, a revolving door of treatment that many are familiar with
Some question whether people are still waiting for the wrong type of treatment. Evidence is presented that shows a different approach to recovery does not rely on weight gain.
Anorexia sufferers are currently treated with a limited success rate. The Journal of Clinical Psychiatry reported that one in every two anorexic patients does not recover nine years following diagnosis. And, only one third of the cases remains ill after 22 years.
As well as the huge personal toll, eating disorders cost the NHS £4.6 billion in hospital stays in 2017/18 — with the average lasting 196 days, estimated South London and Maudsley NHS Trust.
The National Institute for Health Research in 2017 revealed that 1 in 2 patients who suffer from anorexia in the UK will relapse.
One reason for the problems could be lack of training and resources. But some clinicians also warn that many anorexia patients — up to one in two, according to a Canadian study published in Frontiers in Psychiatry this year — are ‘treatment-resistant’, and little can be done to keep them out of a ‘revolving door’ of therapy.
Even the idea that patients choose to be ill is supported.
According to Dr Ciara Joyce (clinical psychologist), researchers have dismissed patients who “resist effective treatment methods” as being ‘wilful and ‘defiant’ since 2014. This was according to the journal Qualitative Health Research.
It is encouraging to see that people suffering from an eating disorder can live a happy life in between visits to the hospital.
Lorna was able to finish her yearlong University of Cambridge degree on schedule and then went on to pursue two graduate degrees (MPhil, PhD), despite being very sick.
According to her, she was considered resistant to treatment and was sometimes tube fed.
However, relapse can lead to serious consequences. Anorexia causes more deaths than any other mental health disorder — with one in five of these due to suicide, according to the National Institute for Health and Care Excellence (NICE).
In August 2018, Emma Brown (27-year-old from Cambridgeshire) died. A coroner’s court investigation was launched into her death. Anorexia, bulimia and bulimia were contributing factors to the death of Emma Brown in August 2018. She was found dead by her mother in her apartment.
Simon Emma, Emma’s father, told the hearing Emma was afflicted with anorexia hell all her life.
This April, Sushila Phillips (36) a freelance journalist who had suffered from anorexia for 22 year and Nikki Grahame (38) a reality TV star who had had the disorder since she was eight years old, both succumbed to it after they were discharged from their eating disorder units.
Instead of people being resistant to treatment as the issue, it is now becoming more common for doctors and patients to see that the protocol itself is the problem.
Lorna is one. She is now fully recovered and says that a “lucky accident” after her 2017 last relapse led to her admission to an eating disorder unit. This facility rejects the notion of treatment resistance.
The woman was brought to Cotswold House in Oxford. It is part of Warneford Hospital and offers one of many new ways to treat anorexia.
CBT-E, a personalized form of CBT that recognizes that patients’ reluctances to heal, is used in this instance.
Lorna was one of the very first to receive CBT-E.
She recalls that it was not about being thin enough to be allowed in the first place.
Dr. Ayton was a pioneer in the Cotswold House treatment.
It is important to remember that patients do not need to be healthy in order for their illness to disappear.
Lorna (now 40) is completely recovered from a lucky accident’ in which she suffered a last relapse in 2017. This led her to be admitted to Cotswold House.
Dr. Ayton says, “But it’s not true. Because this is a complex mental disorder that must be treated like such.”
Dr. She believes that patients should be given an active part in diagnosing the root cause and identifying any factors that may contribute to the existence of eating disorders.
“This will enable them to be committed to their recovery and accept help when it fluctuates,” she said.
Lorna began CBT-E two weeks after her admission. She spent those first few weeks talking with different team members in an effort to determine the causes of her illness.
Lorna recalls, “That was me understanding that my brain responds to being underweight” and sending messages that are false and unhealthy.
“I had to learn to trust my medical team in order to fully understand it.
“That was a slow process as we all worked together. This new understanding was not rushed by anyone.
Chris Fairburn is an emeritus Professor of Psychiatry at Oxford. He says that it’s crucial for therapists to not try and fight someone with eating disorders. “That causes people to dig in. Oder they ignore the problem and avoid talking about it.
CBT-E is Professor Fairburn’s best-known CBT therapy for eating disorders, also called CBT-ED.
“The concept is to assist people who are scared, but do not know what to do. They are also very cautious about asking for help.
Kerrie Jones (a psychotherapist who used to lead the Priory Hospital Roehampton’s eating disorders program, CBT-E) says, “You’re asking people not to engage in a behavior that’s been their only safe way of feeling secure.”
It’s unlikely to happen in an instant, she says.
CBT-E for those with anorexia can be lengthy — taking up to 12 weeks as an inpatient and up to 40 weeks as an outpatient, according to NICE.
In a world of increasing waiting lists, some consider that unsustainable. According to Professor Glenn Waller of the University of Sheffield in 2019, “Briefer therapy is just as effective as long therapy.” This was stated at a New York conference.
Reporting on the CBT-T version was a reduced version that included ten sessions.
There is evidence that it can be as effective as longer therapies for a range of eating disorders —although the evidence for anorexia suggests it only works for ‘atypical’ anorexia, a milder form of the illness.
For all cases except the most severe, intensive therapy outside of hospital is another option. While receiving full treatment in an outpatient unit, patients can continue to live at their homes and be responsible for some meals.
Jess Griffiths is the clinical leader at Beat, an eating disorder charity. She herself was an orexia patient.
“If every meal is carefully planned for many months, it may be hard to take care of yourself.”
Kerrie Jones started Orri three years ago. It is a private clinic for eating disorders in London. “I was aware that the NHS and private sectors were not providing intensive day care,” she said.
Orri offers a combination of CBT-E and intensive day therapy.
A day unit provides intensive treatment, including psychotherapy. Patients can spend up to half a day there.
Kerrie Jones adds that many people require an intervention to address the root causes of eating disorders while continuing with their daily lives.
Jill Smith is 38 years old and a West London graphic designer. She currently lives in her home while working part-time at Orri.
She says that psychotherapy is a great help. Psychodrama is a group therapy that involves actors, directors, and audience members.
“It’s been especially powerful for me because it allowed me to utilize the role-play to investigate toxic family dynamics.
“Meanwhile though, I was able to have a new love and relationship even though I still fear eating.
Lorna received CBT-E from Cotswold House. This personalised version of CBT is meant to recognize that patients’ reluctances to heal is part of their illness.
Another important development during pandemic was the acceptance of Zoom and other online support as effective. “Clinicians learned from patients how to use online support platforms.
Oxford researchers reported that CBT–E might actually be more effective when it is delivered online, even in the most extreme cases.
An ongoing study (Transition Care in Anorexia Nervosa Through Guidance Online from Peer and Carer Expertise — or TRIANGLE), has been organised by the Institute of Psychiatry at King’s College London to look at online guidance for carers and patients.
The study revealed that over half the anorexic patients in the research ‘feel empowered’ to accept greater control of their recovery through remote support and self management resources.
Orri’s intensive day care programme is also being delivered online (at half the day care cost of £500).
‘It’s got so many benefits — preventing people from losing touch with practitioners when they go to university, for instance,’ says Kerrie Jones. We can now go along with them.
The NHS will follow these same trends. NICE approved CBT/E in 2017. However, Dr Ayton says that the NHS’s pace of improvement is slow. Her blames are underfunding, lack of training and insufficient funding.
Kerrie Jones believes that online and day therapy should be easier to access than in-patient treatment.
She states that it is crucial to realize the importance of this statement. Therapy becomes more challenging the longer someone waits to begin treatment. The more ingrained the illness, the harder it becomes.
It’s not uncommon for anorexia sufferers to be admitted at hospital with low BMIs of 11, 12, or 24.9. Normal BMI is 18.5 to 24.9. So, it is impossible to sustain life without feeding them in any way.
However, Dr Ayton explained that there is a significant obstacle in the NHS to providing intensive care outside of hospital.
She says, “The problem with the NHS is that it has two funding models.”
“There’s one stream that is available for hospital patients who are receiving intensive care and another for homebound patients.
“It’s difficult to receive intensive care while you live at home.
Lorna is one of few people who has been able, for the time, to reap the benefits.
In January 2018, she was relieved with initial community support.
When asked how she feels now, she said that three to four years ago she would have declared normal living impossible. It’s just getting better.