I told her she was being ridiculous. I told her to get a grip and grow up, to ‘just bloody well eat, for Christ’s sake’.
I drew a parallel to the appalling plight of family friends whose young daughter passed away from leukaemia. She was desperate to live, but despite all the medical help available, she couldn’t. That is a tragedy. But you are doing it to yourself.
What I failed utterly to grasp was that she was seriously mentally ill and could not see a future for herself. [The Telegraph]
Anorexia Nervosa – A Father and Daughter Perspective -Highlights from RCPsychIC 2019
This article is a summary of the panel discussion at RCPsychIC 2019 that involved Mark Austin, journalist and television presenter, his daughter Maddy Austin, expert by experience, Rachel Bannister, carer, and Dr Mark Berelowitz (Consultant Child and Adolescent Psychiatrist, Royal Free London NHS Foundation Trust).
The parents’ perspective
Mark Austin (Journalist and TV presenter) began this interview session by saying that everybody has their own story when it comes to mental health and anorexia and that no two stories are the same. This session is not intended to be prescriptive, but may help contribute to the treatment of eating disorders and associated mental health issues.
From Mark’s perspective, he was shocked at his ignorance of the condition and told of how the experience has brought to light how anorexia can potentially destroy families.
It’s a story also of ignorance, my ignorance, about the condition and I hope that in some ways it also reflects how this condition, this disorder, potentially destroys families and tears families apart. So, it’s just our perspective and I hope in some way it helps.
Behaviour that was initially thought of as ‘a teenage fad’ was assumed to be harmless but was, in fact, a mental illness.
I got a phone call from my wife to say that Maddie wasn’t eating, and that she was behaving quite strangely with food… Two or three weeks later when I went back home Maddie was still not eating properly and what we didn’t realise was that we were dealing with something that was effectively a mental illness. I didn’t realise that early enough and my wife who is an A&E doctor – she didn’t really realise what was going on either – and eventually Maddie was diagnosed with anorexia. [Mark Austin]
I decided to go on the attack.
When Maddy received a diagnosis of anorexia nervosa, the family struggled to find suitable treatment quickly enough, and Maddy’s symptoms rapidly descended into a dangerous physical manifestation of the existing mental illness.
Maddy is described by Mark as someone who very quickly became ‘manipulative, cunning and deceitful’, and began to waste away in front of them. Treatment was once per fortnight and consisted of being weighed, having a meal plan and counselling. However, it was soon realised that fortnightly treatment was not frequent enough. Mark still did not understand this was a mental illness and became increasing frustrated with Maddie’s obstructive and manipulative behaviour towards the disorder.
At this point, the family were informed that Maddie was not ill enough to attend a Day Care treatment centre or Residential Unit. On the other hand, she was too ill for a private care unit due to the risk of organ failure which the private unit could not deal with, and the fortnightly treatment became weekly and continued as before.
Eventually, Maddie was admitted to a private unit which could care for her 24/7, with each resident trying to eat as little as possible and beat the system. The environment was detrimental to any possible recovery and Maddie was then treated at home where her mother, an A&E consultant, became her full-time carer.
We were now at our wits end and we took Maddie out of there [24/7 care] because we were in fear for her mental wellbeing…We took her out and my wife gave up work, she was an A&E consultant and basically set up an emergency care unit in her bedroom. But my point is this, that not everybody has a mum who is an A&E doctor and, I guess, a pushy journalist, who just kept looking for answers and looking for the right way to treat this. [Mark Austin]
Mark’s point is that not every patient has the means to research the best ways to treat their disorder, and that they were very lucky to find a local Day Unit. Unfortunately, many patients are denied Day Care due to a lack of resources in their area. In this environment, Maddy began to get well, but as Mark says, they were very close to losing her.
The patient perspective
Maddy presented her account of the illness and described her experience. According to what she called her ‘anorexic mind’, an appointment once per fortnight was an ‘anorexic’s dream’ allowing her to work on how much weight she could lose before the next appointment. She describes anorexia as a ‘very selfish and manipulative’ illness, and the point at which people start to notice the weight loss is when an anorexic begins to lie.
When she “hit rock bottom” regarding both her physical and mental state and was admitted to the intensive and expensive in-patient unit Mark described, Maddy, explains how she shared a room with around seven other girls between the ages of 10-18 years.
In this competitive environment, she learned extremely harmful coping strategies from residents, such as jumping up and down in the shower and sitting next to a window so that she could shiver more. She does not think that she would have learned these behaviours had she remained at home.
By the time Maddy was removed from in-patient care and was attending the NHS Day Care Unit she had turned 18 years old and had transferred to adult services. She was now in a position where she did not need to tell her parents anything about her illness or treatment even though she was still under their care, which fed into the selfish and manipulative behaviour associated with the disorder.
Eventually, dad helped me get out and I ended up in a Day Patient Unit. The difference here was that I suddenly turned 18 and went from child services to adult services, and suddenly I got this option, ‘Oh, you don’t need to tell your parents anything about your treatment anymore, you can withhold everything.’
So, I was living under my parents’ roof, and I just, obviously, because I was very manipulative, very selfish, I said ‘fine, I’m not going to tell them anything about what’s going on.’ And, still under their care, still being fully funded by them in my day-to-day life, they didn’t know anything about my treatment, about my wellbeing at all. So that was a big problem, that step between child services and adult services. [Maddy Austin]
She describes the most beneficial part of her treatment was going home in the evening, something which was instrumental in dealing with the underlying depression associated with her illness. She learned how to control how she felt in the environment which contained the triggers for her illness. It may be that when someone receives treatment far away from home, they are unable to deal with those triggers on returning. She described the integration into the community is what helped save her life.
[In the Day Patient Unit] I’d have breakfast, lunch, then go home in the evening and I think that was the biggest help I got in my treatment. Yeah, I could have put weight on anywhere, I could have put weight on in Scotland, but I needed to sort out my mental state because there is this underlying depression with anorexia. If you put on the weight somewhere else, and then come back to your normal life and the life that has all these triggers that caused everything originally, you’re not going to recover. You’re just going to go back into this cycle and just end up being sent off to another unit.
So, me being home every evening, being at home every weekend, yeah initially it was very difficult but I learned to control how I felt in the environment that I was going to live in post-treatment, or when I was no longer a day patient, and it was that integration into the community that I think really saved my life. [Maddy Austin]
The carer’s perspective
Rachel described the heartbreak of leaving an extremely ill child in a hospital far away from home with a team of professionals they have never met before. A journey of over 300 miles to Scotland was the only option for her daughter as there were no rehabilitation services in the local community. Rachel insists that her daughter learned the behaviours associated with anorexia while in the hospital, supporting Maddy’s own experience of institutional treatment.
She describes the time when her daughter stopped eating because she had been told that her BMI was not low enough to be transferred to the hospital of their choice, where she would have had some continuity. The result was an escalation of maladaptive behaviour and self-harm, and after two years in institutions, she is still holding onto her anorexia.
The Doctor’s Perspective
Early and intensive treatment is better and should take place within the community environment where possible.
Dr Mark Berlowitz of the Royal Free Hospital in the UK has a community-based programme and gave an insight into the outcomes achieved and the costs involved. Keeping young people at home involves good working relationships with the local healthcare economy, hospital management, and families.
At the Royal Free [Hospital] we learned over the last 20 years that if you put your mind to it, and if you have really good relationships with the local healthcare economy and with your own management and the families, you can set up a service that keeps young people at home. And we’ve gone at the Royal Free from having no eating disorder service at all for young people 20 years ago, to a service that is now so large and robust that I don’t run it anymore.
For this programme, funding was obtained to provide more intensive treatment for their 15 most unwell young people, and measured through outreach work in the home. He emphasised that there is no incentive to keep people in a hospital, regardless of where they live, and how with the right support, luck and courage, the programme has been very successful from the point of view of both the medical professionals and families.
We started in the spirit of trying to keep young people out of hospital…then, the medical director at CCG wrote a scientific paper arguing that in-patient treatment doesn’t work. And so, our 5 CCG Commissioners came to us and said, ‘can you do something different?’ We asked for funding to provide more intensive treatment for our 15 most unwell young people and we specifically asked to be measured on doing outreach work, going to homes. [Dr Berlowitz]
Regarding cost, one year of in-patient treatment costs around £250,000 whereas one of the programme’s intensive places costs £95,000; this allows five people through each intensive place every year, and around one-fifth of the cost of in-patient care.
Mark Austin concluded the session emphasising that Maddy was told on several occasions that she could not be treated because she was not ill enough. That, unfortunately, is about resources and the current pressure on bed numbers. To be told, you are not ill enough – with a condition where the trajectory is predictive, very dramatic, fast, and alarming – it doesn’t take long to become ill enough.
Maddy reiterated that telling an anorexic they are not ill enough, merely turns a switch on in their head to achieve the required level of illness. She likens it to being told that, even in the disease, the patient is not doing enough and is probably one of the most disturbing things she heard during her illness.