Written evidence from Hope Virgo[1] (IDF 05)
Public Administration and Constitutional Affairs Committee
Follow-up to the PHSO report ‘Ignoring the alarms: How NHS eating disorder services are failing patients’ inquiry
Executive Summary
Introduction
Hope Virgo is the Author of Stand Tall Little Girl, and an international leading advocate for people with eating disorders. Hope helps young people and employers (including schools, hospitals and businesses) to deal with the rising tide of mental health issues which affect one in four people and costs employers between £33 and £42 billion annually. She has been described by Richard Mitchell, CEO of Sherwood Forest Hospital, as "sharing a very powerful story with a huge impact". Hope is also a recognised media spokesperson, having appeared on various platforms including BBC Newsnight, Victoria Derbyshire, Good Morning Britain, Sky News and BBC News.
Hope lived with anorexia for four years before being admitted to a mental health hospital where she spent a year of her life learning about recovery. Since being discharged from hospital, Hope has relapsed once but now manages her recovery.
Through her own personal experience and extensive reach across people affected by eating disorders Hope is raising awareness of key issues with a specific focus on the implementation of the diagnostic criteria for eating disorders through her hugely successful ‘#DumpTheScales’ campaign
(https://www.change.org/p/eating-disorders-are-not-just-about-weight-dumpthescales)
Response to Recommendations
I welcome the training elements that are being rolled out at the moment following this terrible tragedy, but this is not going far or fast enough. Not only does there need to be a full review of the training package offered but we also need to ensure the right messages are being communicated to the right audience. It should not be down to a post code lottery on whether the GP you see has understanding or interest in eating disorders.
GPs, junior doctors and clinical professionals are the initial points of contact during treatment and are not uniformly implementing the recommended guidelines, in particular many clinicians are still using BMI to decide whether someone with an eating disorder can access treatment and support. I get contacted all the time but people who are being turned away because their weight is viewed as “acceptable” (see below for case studies). It is therefore vital to improve their training and education on NICE guidelines. It needs to be made critically clear that it is not simply a weight issue. The focus needs to shift from assessing treatment based on weight to encompass the wider complexities of mental health diagnosis and treatment.
In the meantime, there are simple measures that can be introduced by GPs in the short term, such as signposting individuals to pro-recovery sites and articles, using the right terminology when someone comes in for an assessment (not focussing too much on weight), and for some where necessary offering a fortnightly weigh in.
Alongside training, it is essential that we look at communications and how we roll out information more effectively. This needs to include service users’ involvement sharing their stories of what worked for them.
Too often we hear of young people falling through the gaps when they reach 18, but there is also an issue when people relocate. Cases should be dealt with on a case by case basis so if someone is towards the end of their treatment they can still remain in the same care if that is what is viewed as best and more long term to their recovery.
Having clear leadership is essential to make this long term change happen. It would be brilliant to have champions across the NHS and Government who can focus on this issue signposting and communicating at all levels.
The Dump the Scales Campaign (https://www.change.org/p/eating-disorders-are-not-just-about-weight-dumpthescales) is aiming to bring an end to the post code lottery around Eating Disorder diagnosis and access to treatment and support. I launched the campaign on 6 July and the petition already has more than 68,000 signatures.
It is great to see the Government’s commitment to mental health and the updating of the NICE Guidelines around Eating Disorders, but too often people still think eating disorders are all about weight.
The specific NICE guideline for eating disorder diagnosis that needs implementing across the country is: “1.2.8 Do not use single measures such as BMI or duration of illness to determine whether to offer treatment for an Eating Disorder.” This is currently not happening.
We know that early diagnosis is a critical element in the success of treatment for Eating Disorders and by the time “obvious” signs of Eating Disorders have manifested, it is likely that the illness will have become ingrained in the individual, and therefore much more difficult to treat. If we want to prevent people getting more unwell, save the NHS money, prevent hospital admission and save lives we need to have this review and ensure that we get full implementation of the clinical guidance around diagnosis.
The guidelines are right but these are not being uniformly implemented across the nation to the detriment of thousands of people daily. It is time we stopped waiting for people to hit crisis point before offering them support.
If we tackled this and changed healthcare policy and public understanding around Eating Disorders the benefits would be huge. We would be able to prevent health decline and death, save the NHS Money and have wider economic benefits (Carer burden etc.). We know that people with Eating Disorders get worsening cognitive decline the more weight they lose so their recovery time is longer. If we had early intervention this would mean people would have a higher success rate in recovery.
If we focus on the mental health of a person and not the weight side, then we can make sure people are getting the right support before things get worse. There is help available, we just need to utilise it in the most efficient way, for example talking therapy, family therapy, group work or meal plan support.
Summary of Recommendations
Case Studies
Connie, 19, Sheffield: In 2016, having struggled with my eating for most of my time at secondary school I ended up going to a cardiologist. It was here, after being weighed, that I was first challenged about my eating and admitted that it was something I had been struggling with. Concerned my eating was affecting my heart I was referred to Sheffield Eating Disorder Service. On my first session there I was assessed and after hearing from me and my dad they agreed my eating has having a large impact on my daily life. At this point I was unable to eat carbohydrates, unable eat around other people and having daily panic attacks. I was, therefore, offered a treatment plan which included weekly appointments with a clinical nurse. However, after weighing me on the second session I was told quite plainly that my BMI was .1 above what was considered underweight. As I was at a healthy weight, I couldn’t receive any support. I was sent away without any advice other than ‘try to eat some rice with your next meal’ or any encouragement to receive further support even though there is an eating disorder charity in Sheffield that offers support to people of a healthy weight.
This led me to believe I did not have an eating disorder, did not deserve help and should therefore continue to lose weight. It was only after I had done this for a further 6/7 month that in the spring of 2017 I was re-referred to Sheffield Eating Disorder Service. As someone who fitted an anorexia diagnosis (BMI of around 17) but was not at that point dangerously underweight I was offered an appointment once a month. For someone who was greatly struggling one hour a month did not make any significant difference in my relationship with food. However, in February 2018 I was put on a 7 month waiting list for different treatment; I was not a priority as my weight, though anorexic, was not dropping. Again this confirmed to me that I was not slim enough to deserve treatment. This led to a real spiral in my eating and consequently physical and mental health to such an extent that I had to give up my place at university.
Aimee, Oxford: When I first started engaging in behaviours, I was confused and ashamed. I didn't want anyone to know and I kept it to myself for a few years. I told my parents which was a huge deal as then that meant my secret was out and I couldn't hide anymore. I saw my GP with a family friend and the GP referred me to Cotswold House in Oxford. I was seen for an assessment relatively quickly but I remember being sat in the car on the way in saying 'they're going to think I'm a fake, I'm not thin enough'. My eating disorder was bulimia with anorexia sub type so weight loss isn't typical/extreme like anorexia. My fears were confirmed when the lady doing the assessment summed
everything up at the end. "Due to your BMI, we will put you on the waiting list and someone will
see you in 7-8 months". I was shocked. I left and had a 'screw it' attitude. Clearly I could still get sicker and it would be 'ok'. By the time I was seen 8 months later as an outpatient, I was so engrossed with my eating disorder I couldn't engage in the therapy.
Phoebe, 25, Essex: I developed anorexia as a teen and was admitted to hospital when I was 17. After that I maintained at a low but stable weight in a state of semi-recovery. I gradually got worse when I was nineteen and under the mental health team; I asked for support so I wouldn't get as badly as a few years previously. Although I was underweight and restricting, as well as self harming in regards to food, my psychiatrist said I was fine despite my history. It made me think "I'll show you how ill I can get". I wanted to prove I was good at my eating disorder. Over several months my relapse became more severe than when I first became ill. By the time I was "ill enough" or "underweight enough" to get help, I didn't want it. I was adamant on staying unwell, I didn't want to lose my eating disorder. I had another hospital admission when I was 20, followed by two separate admissions to a day patient programme in Colchester, where I lived from the age of 18. I began my recovery in 2014 when I was 21 and couldn't bear life with anorexia any more. I've had lapses since but my recovery has mostly been successful. It's a lot of hard work even now though.”
Daisy May, 21, Southampton/ Cumbria: Lived with anorexia from the age of 14. When Daisy turned 18 she attended one year at University and then had to drop out due to her eating disorder. In Cumbria the BMI Criteria is 13 on eating disorders and there are only 10 people recorded to have an eating disorder. Daisy was constantly turned away from support for not having a low enough BMI. Daisy ended up paying for private treatment in South Africa.
Sammy Halstead, 20, Cardiff: Letter received after living with anorexia saying her BMI was 17.8 which does not make the criteria for eating disorders.
April 2019
[1] Hope Virgo, Author and Mental Health Campaigner