The radical new talking therapy beat vicious cycle of anorexia
Half of patients with anorexia are still ill nine years after diagnosis – and in and out of hospital. But now, a pioneering approach in which weight ISN’T mentioned is having impressive results
LIt would appear the country’s anxiety level has been raised
ORNA 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 a university. ‘I couldn’t control anything in my life so I tried to control my body shape and what I was eating.’
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.
Anorexia triggers an intense fear of gaining weight and can be fatal.
Typically, anorexics are perfectionists who may also lack confidence or selfesteem and become preoccupied with their weight and shape, according to the Mental Health Foundation.
Many more may now be struggling to get treatment.
Over the past year the demand for treatment for eating disorders ‘has soared during the pandemic, with adult admissions in 2020 rising by 32%.
Speaking on RTE’s Drivetime earlier this month, Professor Cathy McHugh, a consultant in Sligo General Hospital said the numbers of people presenting with serious eating disorders has risen since the beginning of the pandemic.
‘From our experience in Sligo a the moment we would normally take in maybe for to five or six patients with eating disorders per year, which would be at the very extreme malnourished spectrum. So far this year we have taken in 12 and there has been an absolute explosion.
‘In the hospital, we are dealing with the tip of the iceberg and when I speak to my colleagues in the community, it has blown out of all control at the moment.
‘Why the pandemic has been so detrimental to it is a good question. It would appear on the frontline what has happened is the anxiety level of the whole country has been raised,’ Professor McHugh said.
‘These are a very vulnerable subset of society who are vulnerable to anxiety. And then all their social supports have been stripped away – they are isolated from their families from work which is a very levelling experience for every one of us.
‘We all need to go to work and be seen to be going to work and this helps a lot with these kind of disorders.
‘The psychiatric services were suspended and moved to phone consultations and if you are looking for someone to self-report weight in this instance, it doesn’t work.
‘You then get people who are at home and totally focused on their eating disorder.’
And it is a problem that is occurring all over Europe.
In England, 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.
The HSE published a national eating disorder treatment plan in January 2018 that planned for 16 specialist care centres in Ireland for adults and children.
But so far just three are in operation and there are still only three specialist inpatient beds in Irish public hospitals for treatment of eating disorders, with others being hospitalised in a general setting.
As a result, many who are ill are forced to seek expensive private treatment if they can afford it or have insurance.
As a result, many are forced to wait until they are extremely ill before they get the help they need.
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.
Current anorexia therapy 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.
According to statistics, one in two patients with anorexia relapses after leaving hospital.
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 a view that patients make a 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 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 Britain’s 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 England, 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 admitted for CBT-E, Lorna found the difference with previous hospital stays to be 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.
‘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 CBTED (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 Bodywhys, which offers support for those with eating disorders and their families.
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, told a New York conference in 2019.
He was reporting on a trimmeddown 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, after seeing there was a need for intensive day care that was not being catered for by health services or the private sector.
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, 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.’
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 €600).
‘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.’
Considering the waiting lists for treatment, online therapy could help those who are struggling and have not been able to access treatment.
Kerrie Jones says that day care and online therapy should be more accessible than inpatient 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’.
Professor Cathy McHugh says more services need to be put in place for those with eating disorders in Ireland.
‘In general if you have an eating disorder in Ireland there is little to nothing out there to support you.
‘GPs are crying out because that is the normal port of call for people. But if you go to your GP what does your GP do?
‘Because there’s no next step. There are very minimal services.’
After 24/7 care It can be difficult to mind yourself