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Trigger warning: This blog contains themes that may be triggering for some people. Hope Virgo is an author, a multi award winning mental health campaigner, and secretariat for the All-Party Parliamentary Group (APPG) for eating disorders. In this blog, she explores the patient safety issues affecting children with eating disorders and their families. Hope highlights how lack of investment and understanding is leading to avoidable harm and shares five key actions for change. This blog is part of our World Patient Safety Day 2025 series - Safe care for every newborn and every child. My campaigning work was born out of wanting to fight the injustices that so many people affected by eating disorders go through. Having lived with anorexia from the age of 12-17 before being admitted to a mental health hospital where I began my journey to recovery, I know first-hand just how awful eating disorders are. I have spent huge amounts of life feeling frustrated by how many people get turned away from services for not having that “particular stereotypical look” and with how much neglect is taking place in treatment across the UK. Patient safety concerns Often people still think someone with an eating disorder will be underweight or have been labelled with anorexia. Eating disorders are so much more than that. During my campaign work and the APPG evidence sessions, I’ve met hundreds of people who have been denied treatment for not looking that way. We have spoken to parents who have children with avoidant restrictive food intake disorder (ARFID), who have not been able to access treatment and support. The reality is, there is a postcode lottery and a lot of children and their families aren’t being given the best chance of life. Many carers also tell me how often their concerns are dismissed as silly worries. This cultural dismissiveness across eating disorder services and the lack of training and funding, is leading to huge issues for patient safety. It is causing people to die. It can feel so hard to speak up when support is so limited, but as a parent or carer, learning to push for support is crucial. I’d also recommend looking at the amazing resources for carers produced by the organisation FEAST. Stigma, misunderstanding and dangerous narratives Eating disorders are an illness that is massively stigmatised and misunderstood. Contrary to many assumptions, people with an eating disorder: are not making a lifestyle choice are not being difficult are not all white females. Eating disorders can impact people of any age, size, gender or race. Stigma and misunderstanding leads to so many people being denied treatment for an eating disorder. Marked as ‘untreatable’ One narrative that we have seen in the last two years is an increasing amount of people with eating disorders being marked as untreatable, too complex and in some cases as terminal and moved to palliative care. This dangerous narrative is causing many people to be discharged from services too soon and given inadequate care. If they are discharged prematurely and still have a malnourished brain they are not being given the chance for it to fully rewire - leading them at high risk of relapse. Time for change For too long eating disorders have been stigmatised and underfunded, with very little specific staff training. For children’s services, whilst there has been some investment, it has been very limited. Five key changes to support patient safety The APPG published a report in January 2025 calling on the government for five key things: Develop a national strategy for eating disorders. Provide additional funding for eating disorder services. This funding should address the demand for both adult and children’s services. Launch a confidential inquiry into all eating disorder deaths. Increase research funding for eating disorders: The aim is to enhance treatment outcomes and ultimately discover a cure for eating disorders. Ensure non-executive director oversight for adult and children's eating disorder services. This oversight and accountability should be implemented in all NHS Trusts and Health Boards in the UK. Recovery When you have an eating disorder, it completely consumes you. It takes over every area of your life. And it consumes your family life too. The research shows that people can and do recover at any age, severity of illness or length of illness. So why are we allowing so many to remain stuck living with an eating disorder and denying them the care they need? Over the last few years. we have seen pockets of good practice in services from the development of integrated enhanced cognitive behavioural (I-CBTE) therapy, to areas where GPs have quickly referred patients or supported families to recover. With the right support and treatment in place for people with eating disorders we will not only save lives but also money. Through early intervention we can prevent hospital admissions and prevent begin becoming more malnourished thus leading to quicker recovery times. Final thoughts Eating disorders are a serious mental health issue. They have the highest mortality rate of any other psychiatric illness yet are often hidden in plain sight. It doesn’t have to be this way. People with eating disorders can and do make full recoveries, we just need to do better to enable this to happen. This growing epidemic can only be reversed by investing into prevention, early intervention, and timely, high-quality treatment. Access to services needs to be free from discriminating criteria and bias. The current inpatient treatment approach results in poor outcomes and 40-50 percent relapse rates. Without a cultural shift and a complete reformation of services nothing is going to change. Campaigners, clinicians and others need to work together to make this change happen. March with us On 21 June, 2025, we’ll be taking to the streets of London for the third consecutive year to march for those we love, for those we have lost, and for the future generations affected by eating disorders. This march is not just a walk — it’s a statement to demand better services and put an end to the neglect faced by those struggling with eating disorders across the UK. Find out how you can join.- Posted
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'I'm terrified of food - but I can't get specialist eating disorder treatment'
Patient Safety Learning posted a news article in News
A woman whose wait for a diagnosis of a lesser known eating disorder left her feeling like a "problem that cannot be solved" has called for reform of how the condition is treated by Northern Ireland's health service. Sinead Quinn, from Londonderry, said binge eating compulsions had made her "a prisoner in her own home, afraid of food and afraid of herself". Binge Eating Disorder (BED) is not currently treated by eating disorder services in Northern Ireland - patients are instead referred to general mental health services. The Department of Health said regional adult eating disorder services were commissioned to treat anorexia, bulimia and atypical presentations of these conditions. BED is the second most common eating disorder in the UK, after atypical eating disorders, according to UK health assessment body NICE, external. The Department of Health said it did not collate data on how many people in Northern Ireland are living with BED. It also said there was no current review of the way the condition is treated. Experts say specialist care within the health service is urgently needed to help people get a formal diagnosis and recover from BED. Prof Laura McGowan, from the Centre for Public Health at Queen's University, hopes the recently announced roll-out of a regional obesity management service for Northern Ireland would include screening of eating disorders like BED. "BED is simply not widely recognised and the services for it not widely commissioned," she said. "For BED patients, especially those living with obesity, there is such an unmet need." Read full story Source: BBC News, 5 June 2025- Posted
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Mental Health Awareness Week is an annual event which aims to raise awareness and promote open conversations about mental health. In this Top picks, we’ve pulled together resources, blogs and reports from the hub that focus on improving patient safety across different aspects of mental health services and also supporting staff with their own mental health and wellbeing. 1 Restraint Reduction Network: Supporting people with lived experience As all forms of restrictive practice can result in harm, it is important that people are able to identify restrictive practices and challenge their inappropriate use. The Restraint Reduction Network have a range of resources that people with lived experience, parents and carers may find helpful. The resources are designed to support people to understand what restrictive practices are, when and why they might be used, people’s rights, and how to identify and challenge unacceptable and unethical practices. 2 Harry’s story: Acute Behavioural Disturbance In December 2022, Harry Vass died after experiencing Acute Behavioural Disturbance (ABD) and a complex disturbance in normal physiology. Harry’s death was found to be avoidable as carers were not fully aware of this condition associated with acute psychosis. In this blog, Harry’s mother Julie describes the barriers they faced in getting the right support and care for Harry before he died and highlights the need for healthcare staff to have a greater awareness of ABD and the associated risks of a medical emergency. You can also read a second blog by Julie, where she explains more about Acute Behavioural Disturbance and the changes she believes are needed to make sure patients like Harry are cared for appropriately. 3 Life Beyond the Cubicle: eLearning to support working well with families during mental health crises A set of eLearning modules designed to educate and update clinicians on the importance of involving families wherever possible during mental health crises to improve patient care, avoid harm and reduce deaths. They were developed as a partnership between Oxford Health NHS Foundation Trust and Making Families Count, with funding from NHS England South East Region (HEE legacy funds). The resources have been co-produced by people with lived experience as patients, family carers and clinicians, supported by an Advisory Group drawn from a wide range of expertise, tested in eleven NHS Trusts and independently evaluated. 4 Mental health crises: how to improve care In May 2024, National Institute for Health and Care Research (NIHR) Evidence held a webinar on care for adults in mental health crisis. The webinar shared research findings on what works in community crisis care, how acute day units compare to crisis resolution teams and whether peer-supported self-management can reduce acute readmissions. This Collection summarises the 3 research projects presented at the webinar. It includes video clips from the speakers and incorporates quotes from the day. The information will be useful for anyone involved in commissioning or delivering mental health crisis services. 5 Self-harm: assessment, management and preventing recurrence This new guideline from the National Institute for Health and Care Excellence (NICE) covers assessment, management and preventing recurrence for children, young people and adults who have self-harmed. It includes those with a mental health problem, neurodevelopmental disorder or learning disability and applies to all sectors that work with people who have self-harmed. The guideline sets out some important principles for care and treatment. For example, it states that self-harming patients treated in primary care must receive regular follow-up appointments, regular reviews of self-harm behaviour and a regular medicines review. 6 Hope Virgo: What needs to happen to stop people with eating disorders being failed by the healthcare system? In this blog, Hope Virgo, author and Secretariat for the All Party Parliamentary Group (APPG) on Eating Disorders, examines the crisis that continues in eating disorder services in the UK and the devastating impact this is having on patients and their families. She highlights how failures in services lead to avoidable deaths. Hope shares the key recommendations from a new report by the APPG and calls for adequate funding and attention to ensure people with eating disorders receive the help they need to recover. 7 Rethinking doctors’ mental health and the impact on patient safety: A blog by Ehi Iden This blog by Ehi Iden, hub topic lead for Occupational Health and Safety, reflects on the increasing workload and pressure healthcare professionals face, the impact this has on patient safety and why we need to start 're-humanising' the workplace. He highlights that, “It takes a safe healthcare worker to deliver safe healthcare to patients.” 8 Zero Suicide Alliance training The Zero Suicide Alliance is a collaboration of NHS trusts, charities, businesses and individuals who are committed to suicide prevention in the UK and beyond. Their website offers free online training courses to teach people the skills and confidence to have potentially life-saving conversations with someone they’re worried about. They offer short online modules covering general suicide awareness, social isolation and suicide in veterans and university students. 9 How can our team move past a traumatic event? After an extreme traumatic event there are things that you can do to help yourself, and your colleagues, to move on. Fiona Day, medical and public health leadership coach and chartered coaching psychologist, Stacey Killick, consultant paediatrician at Glan Clwyd Hospital, and Lucy Easthope, professor in practice at Durham University’s Institute of Hazard, Risk, and Resilience and adviser on disaster recovery give their tips in this BMJ article. 10 Blog: Shifting the dial on mental health support for young black men In this blog for NHS Confederation, Kadra Abdinasir talks about how mental health services have failed to engage with young black men, and describes how services need to change to overcome the issue. She argues that delivering effective mental health support for young black men requires a move away from a crisis-driven response, to investment in system-driven, community-based projects. Kadra looks at learning from Shifting the Dial, a three-year programme recently piloted in Birmingham as a response to the growing and unmet needs of young black men aged 16 to 25. A recent report on the project found that most young men involved in Shifting the Dial reported good outcomes related to their wellbeing, confidence, sense of belonging and understanding of mental health. 11 Vicarious trauma: The invisible epidemic In healthcare, an insidious epidemic lurks beneath the surface, affecting the very individuals tasked with providing care: vicarious trauma by empathy. Despite its profound impact, this phenomenon remains largely unrecognised and under-discussed within the sector. As leaders, it is imperative that we shed light on this invisible trauma and acknowledge it as one of the greatest challenges facing our industry, as Margarida Pacheco explains in this blog. 12 Beyond stereotypes: A lived experience guide to navigating support for disordered eating Disordered eating can affect anyone, but it can be confusing to understand and recognise it in our own personal experiences. This guide, published by East London NHS Foundation Trust, is a snapshot of how adults in East London have navigated those experiences of uncertainty while seeking support for disordered eating. For many of the contributors, preconceptions about what an eating disorder is (or isn’t) have previously acted as a barrier to seeking or receiving support. It also contains advice on how to seek support for disordered eating. 13 “The alarming rate of suicide among healthcare workers should be a wake-up call in the urgent need to support them” Frontline19 was established at the start of the Covid pandemic as an urgent response to support frontline workers who were under extreme pressure and experiencing significant mental health challenges. Psychotherapist Claire Goodwin-Fee is the founder and CEO of Frontline19. In this blog, Claire explains how systemic pressures and stigma around mental health are continuing to leave healthcare staff extremely vulnerable. 14 Blog: Why harmful gender stereotypes surrounding men’s approaches towards their feelings need challenging This blog explores why men are reluctant to seek support when they are struggling with their mental health and why the suicide rate is so high. It looks at initiatives that exist to encourage men to seek help and highlights what more could be done to support mens’ mental health. 15 Learning how to protect the health system by protecting the caregivers This commentary in JAMA Network Open looks at the increasingly recognised problem of burnout among US healthcare professionals. General Social Survey data suggest that almost one-half of US health care workers experienced symptoms of burnout often or very often in 2022, up from less than one-third in 2018. The article explores research that demonstrates the extent of the issue and highlights studies looking at ways to reduce burnout. The authors conclude that systemic change will be required to tackle the issue. 16 Time for a rebalance: psychological and emotional well-being in the healthcare workforce as the foundation for patient safety In this editorial for BMJ Quality and Safety, Kate Kirk explains why staff well-being is the foundation to improving patient safety. 17 Top tips and key actions for successful collaborative partnership working across mental health services These top tips and key actions have been co-developed to support effective collaborative partnership working in the planning and delivery of community mental health services. They recognise that every heath and care system will experience challenges in relation to partnership working given the statutory and cultural differences of organisations working across the mental health pathways and that there will be different arrangements to frame local partnership working, including for example a Section 75 agreement. 18 Balancing care: The psychological impact of ensuring patient safety In this blog, Leah Bowden, a patient safety specialist, reflects on the impact her job has on her mental health and family life. She discusses why there needs to be specialised clinical supervision for staff involved in reviewing patient safety incidents and how organisations need to come together to identify ways we can support our patient safety teams. Have your say Do you have any stories, insights or resources related to mental health? We would love to hear from you! Comment below (register for free here first) Get in touch with us directly to share your insights.- Posted
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Most areas cut eating-disorder help for under-18s
Patient Safety Learning posted a news article in News
Most areas in England are planning cuts to specialist eating-disorder services for children and young people this year, an analysis shows. Of the nation's 42 NHS integrated care boards, 24 are due to reduce spending for under-18s in 2024-25, once inflation is taken into account. Overall spending is due to go up by 2.9%, with budgets rising in the other areas, but the Royal College of Psychiatrists (RCPsych), which carried out the analysis, said this was too little to cope with increased in demand. NHS England said improving care was "vital" and more action was being taken in the community to support young people before their condition became a crisis. Spending had been increasing for a number of years but "more work needs to be done", an official added. Veronika, 20, has been struggling with an eating disorder for five years. "Shrugged off" by services in the past, she says cuts could be "catastrophic" for people like her. "It will have a knock-on impact and people won't want to seek help even from their GP, even for physical-health monitoring," Veronika says. "It will just spiral on and on. "It is horrible living day in and day out with it. "And if you are not seen quick enough, I know myself how quickly things can spiral in a matter of weeks or days. "It is going to be tragic for some and just long and horrible for others". Read full story Source: BBC News, 5 March 2025 Related reading on the hub: Top picks: 14 resources on eating disorders Hope Virgo: What needs to happen to stop people with eating disorders being failed by the healthcare system? The right to health: People with eating disorders are being failed- Posted
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An NHS chief is calling for a crackdown on the online sale and prescription of popular weight-loss jabs like Ozempic and Mounjaro following warnings from charities about an increase in people with eating disorders accessing the drugs. One clinician even warned that patients with low body mass index (BMI) or a history of anorexia are able to get an online prescription for the injections by filling out a simple patient questionnaire and lying about their body weight. “I am seeing patients who have pushed themselves to rapid weight loss on these jabs, fasting and strenuous exercising,” said Dr Adarsh Dharendra, a consultant psychiatrist specialising in eating disorders at Priory Life Works in Surrey. “Yet patients can still access so many rogue pharmacy websites on mainstream as well as the dark web.” NHS national medical director Professor Sir Stephen Powis urged online pharmacies and private providers to “act responsibly” and ensure that the drugs are only prescribed to people with a medical need for them, such as those with diabetes. Last month, the pharmacy regulator tightened prescription rules to prevent weight-loss medications from being supplied “inappropriately”, after groups including the National Pharmacy Association warned some online suppliers were wrongly prescribing the drugs to people who had previously had eating disorders. Read full story Source: The Independent, 4 March 2025- Posted
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This report from the All Party Parliamentary Group (APPG) on Eating Disorders highlights the urgent need for a national strategy to address the growing eating disorder crisis in the UK. It is based on evidence given by people with eating disorders, carers, healthcare professionals, managers and academics, alongside information obtained from Freedom of Information requests and data analysis. You can find out more about this report in this blog by Hope Virgo, author and Secretariat of the APPG. The report reveals that: people face significant barriers to accessing treatment. healthcare providers are insufficiently trained. care pathways are fragmented. there is a lack of standardised data around eating disorders. there is a postcode lottery in service provision. patients are at times being discharged from services with dangerously low BMIs. The report makes five recommendations that call on the Government to: develop a national strategy for eating disorders. provide additional funding for eating disorder services This funding should address the demand for both adult and children’s services. launch a confidential inquiry into all eating disorder deaths. increase research funding for eating disorders: The aim is to enhance treatment outcomes and ultimately discover a cure for eating disorders. ensure non-executive director oversight for adult and children's eating disorder services. This oversight and accountability should be implemented in all NHS Trusts and Health Boards in the UK.- Posted
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Treat eating disorders as an emergency, MPs urge
Patient Safety Learning posted a news article in News
Lives are being lost and families torn apart because of "woefully inadequate care" for people with eating disorders, according to a group of MPs. The "alarming" rise in disorders such as anorexia and bulimia, over the past decade, has now become an "emergency", the All-Party Parliamentary Group on Eating Disorders says in a report. And greater awareness about different types of eating disorders and how they affect males and females of all ages and ethnicities is urgently needed. The MPs, external spent six months listening to "harrowing" experiences from patients, bereaved families, clinicians and academics. Eating disorders are often misunderstood and seen as a lifestyle choice affecting only white teenage girls, the report says. In reality, they are serious but treatable mental illnesses. The report says services are "grossly" underfunded, there are barriers to accessing treatment and wide variations in care quality across the UK. Campaigner Hope Virgo worries some people with long-term and complex eating disorders are being viewed as "untreatable" and "being sent home to die". Read full story Source: BBC News, 22 January 2025 Read the blog from Hope Virgo published on the hub today: Hope Virgo: What needs to happen to stop people with eating disorders being failed by the healthcare system?- Posted
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In this blog, Hope Virgo, author and Secretariat for the All Party Parliamentary Group (APPG) on Eating Disorders, examines the crisis that continues in eating disorder services in the UK and the devastating impact this is having on patients and their families. She highlights how failures in services lead to avoidable deaths. Hope shares the key recommendations from a new report by the APPG and calls for adequate funding and attention to ensure people with eating disorders receive the help they need to recover. Eating disorders are among the most serious and life-threatening mental illnesses but have been overlooked and underfunded for far too long. Because of this, eating disorders have one of the largest treatment gaps in modern healthcare. In the past decade, we have seen an alarming rise in eating disorders, a trend that only worsened during the Covid-19 pandemic.[1] What was already a struggling support system for people affected by eating disorders has collapsed under this pressure. Too many people are waiting for support from treatment services that have been grossly underfunded and neglected for many years. In addition, public perception of eating disorders is still dominated by narrow stereotypes—but eating disorders don't discriminate and affect people of all ages, genders and ethnic backgrounds. Understanding the situation for people with eating disorders in the UK Over the last six months, the All-Party Parliamentary Group (APPG) on Eating Disorders has been meeting with people affected by eating disorders, clinicians, researchers and campaigners to gain an accurate picture of what is going on in the UK. The stories we have heard are harrowing and eye-opening to the epidemic of eating disorders that our healthcare system faces. We have heard stories of people: being denied treatment for not being thin enough. spending nights in A&E being hydrated, only to be discharged out into the community with no follow-up plan or treatment package. people being discharged from inpatient and outpatient treatment at low BMIs. In some cases, this has resulted in organ failure, suicide or repeat admissions to A&E where people have been crying out for support, only to be blamed for their condition. avoidable deaths. These stories have added to the evidence seen in the pre-pandemic survey of adult community eating disorder services, which highlighted significant shortcomings in community services’ capacity to manage risk. Only around 40% of services provided complete medical monitoring and/or had good links with acute hospitals.[2] Unfortunately, as the severity of a patient's illness increases, the likelihood of them seeking and accepting help decreases significantly. This means that the inability of 50% of services to provide follow ups or assertive outreach to patients who do not engage further increases the risk of deterioration these patients in the community. The statistics we have from the Office for National Statistics (ONS) show much lower mortality figures than we believe to be the case, which is likely due to inaccuracies in recording practices. For those with anorexia, deaths are often caused by physical complications such as malnutrition, gastrointestinal issues, metabolic disturbances, cardiovascular events or infections, and recorded as such. Type 1 diabetes with disordered eating (T1DE) significantly increases the risk of premature mortality. These risks can be reduced with improved services and targeted medical training. Several psychiatric conditions can occur alongside eating disorders, including substance misuse, personality disorders and self-harm. This further heightens the risk of a person dying, which is why we need integrated care to bridge gaps between eating disorder and other mental health services. International studies have shown that integrated, timely services can improve outcomes and prevent deaths.[3] Zara had an eating disorder and tragically died from suicide. Zara’s mum, Debs, believes her daughter would still be alive if she had received the support she needed and asked for. “My beautiful daughter, Zara—intelligent, sassy, kind, and compassionate—took her own life on 22 September 2021 after struggling with an eating disorder for nearly 10 years. Zara was diagnosed with Anorexia Nervosa in May 2013 and was admitted to an Eating Disorder Unit almost immediately. Instead of being good news for her recovery, this is when the nightmare began. From May 2013 to June 2021, Zara endured 13 inpatient admissions across seven different units, including three years as a continuous inpatient—nearly two of which she spent without ever leaving one of the units or going outside. With each admission, her eating disorder and mental health deteriorated further. During this time, she was restrained daily, often by a minimum of six people holding her down. She received very little therapy, and instead, there was a culture of patient blaming and shaming. In the last two years of her life, Zara was crying out for help, but no one would listen. The Eating Disorder Unit discharged her completely, handing her over to the community mental health team. I spent nearly every day taking ligatures off her, lifting her down from her wardrobe when I found her near unconscious, and performing CPR when I found her in the shower. There was little to no support from our community psychiatrist; we were left to cope alone. No matter how much we pleaded for help, it was a constant battle, and we never received the support Zara so desperately needed. My beautiful daughter should never have died from this illness. There was a whole world out there for her, and she had so much to give. But ultimately, Zara felt like everyone had given up on her. She was only 24 when she died, but she was exhausted, and didn’t know any other way to keep going without support." Zara's story is one of many similar stories that are unfolding for countless others across the country. Behind these tragedies are systemic failures, often overlooked and hidden behind a lack of national data, questionable legal decision-making and cost-saving agendas. New APPG report—The Right to health: people with eating disorders failed The APPG on eating disorders has released its first report into the state of eating disorder services in the UK. It makes five recommendations for the Government, including the call for a confidential inquiry into all eating disorder deaths. Development of a national strategy for eating disorders. This strategy will encompass adults and young people, with sufficient funding to reform all services. The goal is to provide timely, evidence-based treatment for every individual with an eating disorder. The national strategy will include: - mandatory eating disorder training for all healthcare workers (including GPs, dentists and nurses). - investment in a public health campaign to clarify messaging around obesity and eating disorders. - funding for the implementation and integration of evidence-based treatment practices, including collaboration between services. - mandatory health screening for high-risk groups. - training for carers. Additional funding for eating disorder services. This funding should address the demand for both adult and children's services. Confidential inquiry into all eating disorder deaths. Increased research funding for eating disorders. The aim is to enhance treatment outcomes and ultimately discover a cure for eating disorders. Non-executive director oversight for eating disorder services. This oversight and accountability should be implemented in all NHS Trusts and Health Boards in the UK. James Downs, a Researcher and Campaigner who shared his own lived experience as part of the APPG evidence sessions, told us that, “Patient safety must be at the heart of reform. Transparency and accountability about the failures in eating disorder services are long overdue, and every NHS Trust and Health Board must include non-executive directors focused on eating disorder services to provide ongoing scrutiny and progress.” With integrated, well-resourced, and evidence-based treatment, recovery is possible, even in the most severe cases and after many years of suffering. Despite this, coroners, families and communities continue to see too many lives needlessly lost. This should not be happening. Eating disorders are treatable illnesses. They are dangerous and life-threatening when untreated, undertreated or poorly treated. But this risk to life is preventable, and deaths from eating disorders are not inevitable. Suzanne Baker, Carer Representative at F.E.A.S.T., gave evidence for the APPG and said, “It is a national scandal that this basic treatment expectation is not being met, leading to preventable deaths. Recovery should be the goal for every patient—a goal that is entirely achievable with the right treatment.” A confidential inquiry is urgently needed to identify modifiable factors that contribute to preventable deaths. We need to see targeted interventions, service improvements and enhanced professional training to address gaps in care delivery. Our question for the Government and the NHS is this: Why in the face of crisis is so little being done to support those affected by eating disorders? Join the conversation Do you have an eating disorder or care for someone who does? We'd like to hear about your experience of accessing services and support. Are you a healthcare professional working in eating disorder services? Share your reflections about how care and treatment can be improved and made accessible to all. You can join the conversation by commenting below (you'll need to sign up to join the hub first) or get in touch with us directly by emailing [email protected] References 1 NHS Benchmarking Network. Accessed 12 January 2025 2 Viljoen D, King E, Harris S et al., 'The alarms should no longer be ignored: Survey of the demand, capacity and provision of adult community eating disorder services in England and Scotland before COVID-19'. BJPsych Bull. 2023; 48(4):1-9 3 Castellini G, Caini S, Cassioli E et al, 'Mortality and care of eating disorders'. Acta Psychiatr Scand. 2023; 147(2): 122-133 Related reading In conversation with Hope Virgo: “The withdrawal of treatment from people with eating disorders is a national crisis that’s being ignored.” Your illness worsens – so care is cut off. This is the scandal playing out in eating disorder treatment (Guardian, 25 February 2024) The right to health: People with eating disorders are being failed (22 January 2025)- Posted
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Type 1 diabetes with disordered eating (T1DE), or diabulimia as some experts call it, is a serious eating disorder that people with type 1 diabetes can develop where the person reduces or stops taking their insulin as a way of managing their weight. The condition can be life-threatening. Although studies are limited, it’s estimated that eating disorders affect more than a third of patients with type 1 diabetes. This episode of the Healthcare Improvement podcast looks at diabulimia and a new toolkit published by SIGN, part of Healthcare Improvement Scotland, which sets out recommendations to raise awareness and provide guidance on how best to support people living with the diabulimia. Guests in this episode include: Lawrence Smith, who was diagnosed with type 1 diabetes when he was four years old and went on to develop an eating disorder in his teens. Safia Qureshi, Director of Evidence & Digital at Healthcare Improvement Scotland, who talks about the key recommendations in the toolkit. Dr Louise Johnston, Consultant and Clinical Lead on the inpatient unit for eating disorders, NHS Grampian.- Posted
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Eating disorders training for health and care staff
Patient-Safety-Learning posted an article in Eating disorders
This series of training programmes was collaboratively developed by eating disorder charity Beat, Health Education England and NHSE. It was developed in response to the 2017 PHSO investigation into avoidable deaths from eating disorders, as outlined in recommendations from the report Ignoring the Alarms: How NHS Eating Disorder Services Are Failing Patients. It is designed to ensure that healthcare staff are trained to understand, identify and respond appropriately when faced with a patient with a possible eating disorder. It includes sessions relevant for different healthcare professionals and includes: Medical students and foundation doctors programme Nursing workforce sessions GP and Primary care workforce sessions Medical Monitoring in eating disorders Understanding Eating Disorders Webinar resource for dietitians, oral health teams and community pharmacy teams- Posted
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This opinion piece in the Journal of Eating Disorders looks at the use of the diagnosis 'terminal anorexia' and its impact on people with anorexia nervosa, their families and the healthcare professionals working with them. Alykhan Asaria offers a lived-experience perspective on how the term may cause distress and harm to patients, feeding the narrative power of an individual's eating disorder. The article also talks about how the term can remove hope from patients, families and clinicians, and how it might set a dangerous precedent in paving the way for people with other mental health conditions to be labelled 'terminal'.- Posted
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“So you’re just gonna leave me to die? That’s what you’re doing? Because I can’t do that, I’m telling you: I’ve been trying to do that, and I can’t. So now what?” Over a year on, Amy, whose name has been changed to protect her identity, is still waiting for an answer – and for the help she desperately needs. The 30-year-old, who has battled anorexia since she was 16 and has been admitted to hospital multiple times, was responding to her eating disorder psychiatrist telling her the service could no longer help her. Amy was told to try to get better on her own by upping her calorie intake, and was warned that she could only be referred to her GP for emergency help if her BMI dropped below 13. A healthy level is between 18 and 25. She is just one example of what experts fear is a growing number of patients who are being told they are “too thin” for care, as stretched NHS services attempt to “ration” the help they offer in an effort to manage demand. Amy complained to the NHS East of England commissioners about the decision by psychiatrists to withdraw her treatment. In a response seen by The Independent, the service treating Amy admitted the move was not conventional. “The decision to use this approach is not taken lightly, but is seen as positive risk management, intended to empower the person to meet their goals for recovery with the support of their GP, who will medically monitor their health, with a clear aim of [the service] ultimately engaging the person in active treatment following a period of self-recovery,” it said. Read full story Source: The Independent, 21 August 2023 Related reading on the hub: People with eating disorders should not face stigma in the health system and barriers to accessing support in 2022- Posted
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Patients ‘not thin enough’ for help as NHS battles eating disorder crisis
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Desperately ill people with eating disorders are being refused NHS treatment for “not being thin enough”, as new figures reveal the health service is in the grips of a growing eating disorder crisis. Shocking figures obtained by The Independent show at least 5,385 patients – the overwhelming majority, 3,896, of whom are children – were admitted to general wards for conditions such as anorexia and bulimia in 2021-22, more than double the number in 2017-18. It comes as separate analysis of NHS figures suggests the number of children being treated for eating disorders more than doubled from 5,240 in 2016-17 to 11,800 in 2022-23. Read full story Source: Independent 1 August 2023 -
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The MindEd all-age eating disorders hub is aimed at all professionals, from universal to specialist. It contains key trusted evidence-based learning, curated and approved by an expert panel. The hub contains the following information:NHS policy guidanceProfessional bodies' guidanceProfessional associations' reportsCharitiesNHS learning and good practiceLegislation and reportsKey and influential textsUnder-served populations- Posted
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NHS must stop sending eating disorder patients to die, watchdog says
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NHS teams are giving up on patients with severe eating disorders, sending them for care reserved for the dying rather than trying to treat them, a watchdog has warned the government. In a letter to minister Maria Caulfield, the parliamentary health service ombudsman Rob Behrens has hit out at the government and the NHS for failures in care for adults with eating disorders despite warnings first made by his office in 2017. The letter, seen by The Independent, urged the minister to act after Mr Behrens heard evidence that eating disorder patients deemed “too difficult to treat” are being offered palliative care instead of treatment to help them recover. The ombudsman first warned the government that “avoidable harm” was occurring and patients were being repeatedly failed by NHS systems in 2017, following an investigation into the death of Averil Hart. The 19-year-old died while under the care of adult eating disorder services in Norfolk and Cambridge. In 2021, following an inquest into her death and the deaths of four other women, a senior coroner for Cambridge, Sean Horstead, also sent warnings to the government about adult community eating disorder services. Read full story Source: The Independent, 27 March 2024- Posted
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Health services for eating disorders overrun
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Health services for Londoners with eating disorders are struggling to cope with demand, a new report warns. Data from London's mental health trusts shows adult referrals have increased by 56% - from 3,000 to nearly 8,000 - in the last six years Child and adolescent referrals increased by 158%, from 1,400 to 4,000, in the same time period. The report has been compiled by the London Assembly's health committee. It has made 12 recommendations to London Mayor Sadiq Khan and City Hall officers, which include assessing other physical and mental health indicators as well as just patients' bodyweight as per their BMI. One consultant clinical psychologist told the committee that "almost all of the eating disorder services in London do not have the staffing levels available to safely provide the care required". Read full story Source: BBC News, 7 March 2024- Posted
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RCPsych calls for an end to children’s eating disorders crisis
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Child and adolescent eating disorder services have never achieved NHS waiting time targets, and are not able to meet significant demand, according to analysis by the Royal College of Psychiatrists. Psychiatrists can identify and address many of the root causes of eating disorders, including neurodevelopmental conditions such as autism and ADHD. However, a current lack of capacity prevents this from happening. Due to a lack of resources, even children who meet the threshold for specialist eating disorder services are often in physical and mental health crisis by the time they are seen. Delays in treatment cause children with eating disorders physical and mental harm. NHS England set a target for 95% of children and young people with an urgent eating disorder referral to be seen within a week, and for 95% of routine referrals to be seen within four weeks. These standards have not been achieved nationwide, since they were introduced in 2021. RCPsych analysis of the latest data shows that just 63.8% of children and young people needing urgent treatment from eating disorder services were seen within one week. Only 79.4% of children and young people with a routine referral were seen within four weeks. The College also warns that there is an unacceptable gap between the number of children being referred to specialist eating disorders services, and those being seen. This is driven by a shortfall in the number of trained therapists and eating disorders psychiatrists. For Eating Disorders Awareness Week, the Royal College of Psychiatrists is calling on Government and Integrated Care Boards to invest in targeted support for children and young people to reverse this eating disorders crisis. The call is backed by the UK’s eating disorder charity Beat. Read full story Source: Royal College of Psychiatrists, 29 February 2024 Further reading on the hub: For Eating Disorders Awareness Week, Patient Safety Learning has pulled together 10 useful resources shared on the hub to help healthcare professionals, friends and family support people with eating disorders.- Posted
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UK eating disorder charity says calls from people with Arfid have risen sevenfold
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The number of people in the UK who have avoidant restrictive food intake disorder (Arfid), in which those afflicted avoid many foods, has risen sevenfold in five years, figures show. The eating disorders charity Beat received 295 calls about Arfid in 2018 – comprising 2% of its 20,535 inquiries that year. However, it received 2,054 calls last year, which accounted for one in 10 of its 20,535 requests for help. Many were from children and young people or their parents. Andrew Radford, Beat’s chief executive, said: “It’s extremely worrying that there has been such a dramatic increase in those seeking support for Arfid, particularly as specialist care isn’t always readily available.” Patchy provision of NHS help meant many people were experiencing long delays before accessing support, he added. Eight in 10 eating disorder service providers did not state on their website whether or not they offered Arfid care, research by Beat found. “All too often we hear from people who have been unable to get treatment close to home or have faced waits of months or even years to get the help they need,” Radford said. Arfid is much less well-known than anorexia or bulimia. It is “an eating disorder that rarely gets the attention it deserves”. The sharp increase in cases should prompt NHS chiefs to end the postcode lottery in care for Arfid and ensure that every region of England had a team of staff fully trained to treat it, he added. “Unlike other eating disorders such as anorexia or bulimia, Arfid isn’t driven by feelings around [someone’s] weight or shape,” Radford said. “Instead, it might be due to having sensory issues around the texture or taste of certain foods, fear about eating due to distressing experiences with food, for example choking, or lack of interest in eating.” Read full story Source: The Guardian, 26 February 2024- Posted
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untilThis Eating Disorders Awareness Week, Beat is asking for all future doctors to be given the training they need on eating disorders, and we need your help. We are holding a webinar to discuss this campaign and your role in taking it to the next level. During the webinar, the campaigns team will be covering: The history of medical training on eating disorders in the UK What changes Beat are campaigning for The progress of the campaign so far How you can get involved in the campaign Register -
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Cases of anorexia and other eating disorders have quadrupled in some areas during the coronavirus pandemic, doctors say. The Royal College of Paediatrics and Child Health (RCPCH) issued an alert to parents, saying the Christmas and new year period can be stressful for young people who struggle with disordered eating. That comes on top of massive disruption to schooling and other areas of life due to Covid-19 which has led to a loss of physical and social activity, plus money worries and bereavement for some. “In our tier 4 under 13s mental health inpatient unit we have seen a three- to fourfold increase in children referred to our service with eating disorders, and they are just the tip of the iceberg.” Dr Nancy Bostock, a consultant in Cambridge, said in a statement provided by the college. Read full story Source: The Independent, 29 December 2020 -
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A new NHS treatment programme targeting young people with eating disorders has been launched amid a rise in numbers needing treatment during the coronavirus pandemic. Recent NHS data showed record numbers of children and young people are currently being treated across England for eating disorders while waiting times in some places are dangerously long. On Monday, children’s charity NSPCC warned that counselling sessions for eating and body image disorders rose by 32% after lockdown was introduced in March. The new scaling up of intervention services for those with eating disorders such as anorexia and bulimia will mean young people can gain access to rapid specialist NHS treatment across England. The service will be rolled out to 18 sites, building on a successful trial model at King's College London, where one patient described the treatment as the “gold standard” of care. Nadine Dorries, Minister for Health, said: “Eating disorders can have a devastating impact on individuals and their families – and can very sadly be fatal. I am committed to ensuring young people have access to the services and treatment they need which can ultimately save lives." Read full story Source: The Independent, 10 November 2020 -
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A decision not to "urgently" refer an anorexic woman whose condition had significantly deteriorated contributed to her death, a coroner said. Amanda Bowles, 45, was found at her Cambridge home in September 2017. An eating disorder psychiatrist who assessed her on 24 August apologised to Ms Bowles' family for not organising an admission under the Mental Health Act. Assistant coroner Sean Horstead said the decision not to arrange an assessment "contributed to her death". Mr Horstead told an inquest at Huntingdon Racecourse that also on the balance of probabilities the "decision not to significantly increase the level of in-person monitoring" following 24 August "contributed to the death". In his narrative conclusion, Mr Horstead said it was "possible... that had a robust system for monitoring Ms Bowles in the months preceding her death been in place, then the deterioration in her physical and mental health may have been detected earlier" and led to an earlier referral to the Adult Eating Disorder Service. He said this absence "was the direct consequence of the lack of formally commissioned monitoring in either primary or secondary care for eating disorder patients". Read full story Source: BBC News, 17 September 2020- Posted
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Tens of thousands of people avoided going to hospital for life-threatening illnesses such as heart attacks during Britain's coronavirus crisis, data has revealed. Shocking figures reveal that admissions for seven deadly non-coronavirus conditions between March and June fell by more than 173,000 on the previous year. Previous data for England shows there were nearly 6,000 fewer admissions for heart attacks in March and April compared with last year, and almost 137,000 fewer cancer admissions from March to June. Analysis by the Daily Mail found that the trends were alarmingly similar across the board for patients who suffered strokes, diabetes, dementia, mental health conditions and eating disorders. Health experts said the statistics were 'troubling' and warned that many patients may have died or suffered longterm harm as a result. Gbemi Babalola, senior analyst at the King's Fund think-tank said: "People with some of the most serious health concerns are going without the healthcare they desperately need. Compared with the height of the pandemic, the NHS is seeing an increase in the number of patients as services restart, and significant effort is going into new ways to treat and support patients." "But the fact remains that fewer people are being treated by NHS services." Read full story Source: Daily Mail, 13 September 2020- Posted
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In 2020, the Scottish Government announced a National Review of Eating Disorder Services. This report has now been published and highlights inconsistent access to eating disorder services in Scotland and the need for greater support. All 15 detailed recommendations laid out in the review will be taken forward by an implementation group of relevant stakeholders, guided by a lived experience panel, including patients, their families and loved ones, and third sector representatives. Recommendations are categorised as follows: Recommendation 1: Covid-19 response Recommendation 2: Implementation planning Recommendation 3: Coordination of national activity and data collection Recommendation 4: Lived Experienced Panel Recommendation 5: Public health Recommendation 6: Self-help resources available to all Recommendation 7: Early Intervention Recommendation 8: Primary care Recommendation 9: Safe medical care Recommendation 10: Investment in specialist eating disorder services Recommendation 11: Workforce Recommendation 12: Education and Training Recommendation 13: Families and carers Recommendation 14: Inpatient eating disorder services Recommendation 15: Eating disorders research in Scotland. To read the full review, follow the link below.