Lorna Collins has been admitted to hospital for anorexia on at least 20 occasions since being diagnosed at the age of 19.
The first time, in 2001, she was at risk of heart failure, ‘teetering between life and death’ after nearly halving her body weight.
Staff worked to bring her up to a healthier weight before discharging her — and so began a depressing pattern.
‘As soon as I got home, I would stop eating and lose weight,’ she recalls. And the process of being taken back into hospital to increase her weight and keep her alive would begin again.
‘The doctors tried to understand me but really all they did was sedate me,’ recalls Lorna, now aged 40 and a research fellow at University College London.
‘I couldn’t control anything in my life so I tried to control my body shape and what I was eating.
‘Each time I was admitted, it was the same endless days with maybe one group therapy session a week where we’d sit in a circle waiting for someone to speak.’
Lorna Collins (pictured) has been admitted to hospital for anorexia on at least 20 occasions since being diagnosed at the age of 19
Lorna would leave hospital having put on a few pounds but with the same underlying problems. ‘I ended up hating what I saw as my obese body even more,’ she says.
This revolving door of treatment is a familiar part of recovery for many.
About 1.25 million people in the UK live with an eating disorder and more than 266,000 have anorexia, which triggers an intense fear of gaining weight and can be fatal.
Typically, anorexics are perfectionists who may also lack confidence or self-esteem and become preoccupied with their weight and shape, according to the Mental Health Foundation.
Many more may now be struggling to get 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’.
She previously warned that the demand for treatment for eating disorders ‘has soared during the pandemic, increasing by nearly 50 per cent’.
In April, the Royal College of Psychiatrists called for emergency funding to treat eating disorders, warning that the system is at breaking point.
It claims severely ill patients are being tube-fed at home because there are not enough beds and specialists to look after them.
Dr Agnes Ayton, chair of the Eating Disorders Faculty at the Royal College of Psychiatrists, says that since the start of the pandemic, clinicians have been reporting an increasing number of patients needing hospitalisation due to extreme malnutrition or other severe complications.
These include brain dysfunction as well as heart and liver problems, osteoporosis and, in younger patients, stunted growth.
In August, the College warned that the number of under-19s waiting for treatment for eating disorders had more than quadrupled during the pandemic.
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
Yet some question whether many are waiting for what is effectively the wrong kind of treatment. They point to evidence that a new approach, which does not use weight gain as proof of recovery, is effective.
The current therapy for anorexia patients has a patchy success rate. One in two patients has not recovered nine years after diagnosis and one in three remains ill 22 years later, reported the Journal of Clinical Psychiatry in 2017.
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.
This cost reflects the fact that one in two patients with anorexia in the UK relapses after leaving hospital, which the National Institute for Health Research revealed in 2017.
Part of the problem may be a lack of resources and training for staff. 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.
There’s even the view that patients make a conscious choice to remain ill.
As recently as 2014, researchers dismissed those who ‘resist the benefits of effective treatment approaches’ as ‘wilful’ and ‘defiant’, according to clinical psychologist Dr Ciara Joyce, writing in the journal Qualitative Health Research in 2019.
The fact that many people with an eating disorder are able to lead a successful life between hospital visits can bolster that view.
Lorna managed to complete a year-long degree at the University of Cambridge on time, and went on to do two postgraduate degrees (MPhil and PhD) while very ill.
She says she was considered treatment-resistant, and sometimes was forcibly tube-fed.
Yet the consequence of relapse can be tragic. 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).
Last year a coroner’s court enquiry was held into the death of Emma Brown, a 27-year old from Cambridgeshire, in August 2018. The cause was lung and heart disease, with anorexia and bulimia nervosa as contributing factors. Her mother had found her dead in her flat.
Emma had battled ‘anorexia hell’ half her life and been admitted to hospital multiple times, her father Simon told the hearing.
In April this year, freelance journalist Sushila Phillips, 36, who’d had anorexia for 22 years, and reality TV star Nikki Grahame, 38, who’d had it since the age of eight, died after being discharged from eating disorder units.
Rather than the problem being people who are ‘resistant’ to treatment, there’s now a growing view that it’s the treatment protocol that is at fault, and that these patients can recover.
Lorna is one of them. Now fully recovered, she says a ‘lucky accident’ after a final relapse in 2017 led to her being admitted to an eating disorder unit that stands the view of ‘treatment resistance’ on its head.
She was taken to Cotswold House, part of Warneford Hospital, Oxford, and one of a handful of NHS units offering one of several new approaches to anorexia.
In this case, CBT-E (enhanced cognitive behavioural therapy), a personalised form of CBT, which is designed to recognise that a patient’s reluctance to recover is part of the illness.
As one of the first patients to be admitted for CBT-E, Lorna found the difference compared with previous hospital stays was startling.
‘For the first time it wasn’t about whether I was thin enough to get in,’ she recalls.
As Dr Ayton, a pioneer of the treatment at Cotswold House, explains, there is a presumption that patients should only be admitted to hospital or a specialist clinic when their weight or Body Mass Index (BMI) has dropped to a particular point.
The corollary is that a patient only needs to eat appropriately for the illness to go away.
Lorna, now 40, is fully recovered after a ‘lucky accident’ after a final relapse in 2017 led to her being admitted to Cotswold House (pictured), part of Warneford Hospital, Oxford
‘But it’s simply not true, as this is a complex mental illness that needs to be treated as such, rather than as a problem simply related to weight loss as is so often the case,’ says Dr Ayton.
She says patients need to be given an active role in identifying the cause of their illness and the factors that keep the eating disorder going.
‘It’s this that will help them to commit to recovery and to accept support when, as so often happens, that commitment fluctuates,’ she says.
When Lorna embarked on CBT-E, she spent the first two weeks after admission talking to different members of the team in order to investigate the factors that were maintaining her illness.
‘For me, that was understanding that my brain changes when I’m underweight and sends messages that are actually false and very unhealthy,’ Lorna recalls.
‘In order for me to understand that fully, I had to come to trust the medical team.
‘That happened quite slowly as we worked together. There was no one trying to rush me to come to this new understanding.’
It’s important that therapists don’t try to fight the person with the eating disorder, says Chris Fairburn, emeritus professor of psychiatry at the University of Oxford. ‘That makes people dig in. Or they avoid the issue and don’t talk about it.’
Professor Fairburn developed CBT-E, which is the best-known of a range of evidence-based CBT therapies for eating disorders known by the umbrella term CBT-ED (eating disorders).
‘The idea is to help people who are really scared but don’t know how to change and are very wary of asking for help.’
‘You are asking people to let go of a type of behaviour that has been the only way they can feel safe until then,’ adds Kerrie Jones, a psychotherapist and former eating disorder lead at the Priory Hospital Roehampton in London, where CBT-E is one of a range of therapies used.
‘It’s not going to happen overnight,’ she adds.
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.
Some regard that as unsustainable at a time of growing waiting lists. ‘Briefer therapy can work just as well as longer therapy,’ Professor Glenn Waller, a psychologist at the University of Sheffield, told a New York conference in 2019.
He was reporting on a trimmed-down version, known as CBT-T, involving ten sessions of psychological therapy.
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.
Another new approach, for all but extremely severe cases, involves intensive therapy outside hospital. Patients are able to live at home and take responsibility for at least some of their meals while taking part in a full programme of treatment at a day unit.
‘There’s a risk of people becoming institutionalised if they spend many months in hospital being supported 24/7,’ says Jess Griffiths, clinical lead at the eating disorders charity Beat and herself a former anorexia sufferer.
‘If you have every meal carefully calculated for months on end, it can be difficult to look after yourself.’
Three years ago, Kerrie Jones founded Orri, a private eating disorders clinic in London. ‘I could see that there was a need for intensive day care that was not being catered for in the NHS or the private sector,’ she says.
The programme offered by Orri combines CBT-E with intensive day therapy.’
Patients spend full or half days at a day unit which provides a range of intensive treatments, notably psychotherapy.
‘What many people need is an intervention that addresses the underlying causes of the eating disorder while they get on with their everyday lives,’ adds Kerrie Jones.
Jill Smith, 38, a graphic designer from West London, is currently living at home and working part-time while participating in a tightly structured programme of day care at Orri.
Psychotherapy has helped,’ she says. ‘So has psychodrama, where we have group drama sessions with each person taking on the role of director, actor or audience.
‘It has been particularly powerful for me as I’ve been able to use the role-play to explore toxic family dynamics.
‘Meanwhile, I’ve also been able to start a new relationship and fall in love, even though I still have fears about eating.’
Lorna was offered CBT-E at Cotswold House, a personalised form of CBT, which is designed to recognise that a patient’s reluctance to recover is part of the illness
A further development in treatment during the pandemic is the recognition that Zoom and other online support can be effective, says Professor Waller. ‘Clinicians have learnt, sometimes from their patients, how to use online platforms.’
Indeed, Oxford researchers recently reported that CBT-E may actually work better when delivered online in all but the most severe 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.
It reported earlier this year that more than half of anorexia patients in the study ‘feel empowered to take greater responsibility for their recovery with the help of 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. ‘Now we can go with them.’
So will the NHS follow these trends? The pace of change within the NHS is slow and, despite NICE approving the treatment in 2017 for any adult with anorexia, CBT-E remains hard to access outside a handful of specialist centres, according to Dr Ayton. She blames underfunding and a lack of training.
Kerrie Jones says that day care and online therapy should be more accessible than in- patient treatment.
‘That’s important, as therapy becomes more difficult the longer people have to wait to start treatment, and the more entrenched the illness becomes,’ she says.
She adds that it’s ‘now common for people with anorexia to be admitted to hospital with very low BMIs, of 11 or 12 (normal BMI is between 18.5 and 24.9), so that sustaining life by feeding the patient in whatever way is possible is all that can be attempted’.
But there’s a major obstacle within the NHS to intensive treatment being provided outside hospital, whether as day care or online, as Dr Ayton explains.
‘The problem is that there are two separate funding models within the NHS,’ she says.
‘There is one for patients occupying a hospital bed receiving intensive care, and another stream for those living at home who do not.
‘It means it’s complicated to get intensive treatment while living at home.’
So, at the moment, Lorna remains one of the few who have been able to benefit from it.
She was discharged in January 2018 with some initial support in the community.
Asked how she is now, she says: ‘Just three or four years ago, I’d have said any form of normal life was impossible for me. Now I just get better and better.’