Anyone who has supported a loved one with an eating disorder will appreciate Wera Hobhouse’s tireless efforts to get better support and services for those living with these terrible and distressing conditions.
1.25 million people have an eating disorder in the UK. Eating disorders can impact anybody, and everybody.
As chair of the Eating disorders APPG, I am pushing to improve ED services in the UK. That is why I am proudly supporting #ChangetheStory this #EDAW. pic.twitter.com/bu309BLZxq
— Wera Hobhouse MP (@Wera_Hobhouse) March 3, 2023
I know first hand how horrendous it is to watch someone suffering in this way. The agony that my loved one went through will stay with me forever, as will all the related anxiety. And I really appreciated that Wera drew attention to eating disorders in men for that reason.
What made things much worse is that there was so little in the way of practical support available. It is great to know that we have a champion in Parliament who gets this and who is fighting for more.
This Eating Disorders Awareness Week, Wera held a Westminster Hall Debate. She called for action to tackle an epidemic of eating disorders. She asked for a targeted strategy for eating disorders to tackle the waiting times for treatment for children and adults, provide training for health and education staff to recognise the signs that an eating disorder might be developing, earlier intervention and evidence based treatments.
19 deaths from eating disorders is 19 too many.
Health services are dangerously lacking and it is failing over a million people suffering with ED's.
It is paramount that the stigma around eating disorders in broken so better support can become available.@beatED @SWEDAUK. pic.twitter.com/CqsIQOV6P5
— Wera Hobhouse MP (@Wera_Hobhouse) February 28, 2023
The full text of her speech is below:
Across the United Kingdom, an estimated 1.25 million people have an eating disorder. That includes binge eating disorder, bulimia, anorexia and other specific feeding or eating disorders—indeed, any disorder that avoids or restricts the intake of food. Left undiagnosed and untreated, eating disorders can be a silent killer. Anorexia has the highest mortality rate of any mental illness, and results from one study have shown that a third of people with binge eating disorder are at risk of suicide.
For too long, sufferers have been left feeling trapped and alone. Here in Parliament, we have been raising the alarm for some years about this rising epidemic, which still needs more urgent action from the Government. However, I want to acknowledge the good working relationships the eating disorders APPG has had with various Ministers. I hope that will continue, and that today’s debate helps us to make progress together.
The theme for this year’s Eating Disorders Awareness Week is eating disorders in men. Eating disorders do not discriminate. Many people think that eating disorders affect only women, but at least one person in four affected by an eating disorder is a man, and 89% of men and boys aged 16 to 18 in my county of Somerset worry about how they look. Those experiences are often overlooked.
Toxic stereotypes are pervasive, and half of respondents to a recent survey of men’s experience carried out by Beat did not believe that someone like them would develop an eating disorder. One male sufferer in five has spoken out about their struggle. That is why the debate is so important. We must encourage men to speak up and get the help they need.
Other rigid perceptions of eating disorders persist. Eating disorders are frequently misunderstood and viewed as a lifestyle choice. Contrary to popular belief, eating disorders are most common among people with severe obesity. Too many people are still being turned away from treatment because their body mass index is too high. To imply that someone seeking help for an eating disorder is not skinny enough is a terrible mistake that can lead to added suffering, and I commend Hope Virgo for her tireless campaign, Dump the Scales, which has made a significant difference.
Owing to those perceptions, people with eating disorders face a postcode lottery in trying to access specialist treatment. Beat has found large inconsistencies in the availability of treatment for binge eating disorders. Only 12 of the 51 providers in England that responded to Beat’s freedom of information request offered all three services for binge eating disorders recommended by the National Institute for Health and Care Excellence.
In some areas, treatment for people with bulimia is being rationed according to the frequency of binging and purging episodes. In others, treatment is simply not available. The Somerset and Wessex Eating Disorders Association, also known as SWEDA, has seen a 150% increase in people seeking help for eating disorders compared with pre-pandemic figures. Its children’s service has been overwhelmed with young people and their parents desperately trying to get support.
Eating disorders can take years to recover from, and many children and young people need to continue their treatment into adulthood. Young people miss out on so many educational and social opportunities. These years are stolen from them, and that is not to mention the potentially irreversible effect on their physical health. Again, this affects girls and boys, men and women—eating disorders do not discriminate.
As I mentioned, eating disorders result in years being stolen from young people, and they can take many years to recover from. Some of the figures are just staggering. A third of people with eating disorders recover fully, a third never really recover, and a third get worse. For the third that never really recover, it is a lifetime sentence of a life that is not as good as it could be. That is why early intervention and understanding the symptoms of eating disorders are so crucial. The earlier someone receives intervention for their eating disorder, the more likely they are to make a full recovery. The longer symptoms are left untreated, the more difficult it is for the person to recover.
Healthcare should focus on prevention before cure, and early access to the right treatment and support can be life-changing. Some 75% of SWEDA’s staff and volunteers have lived experience of an eating disorder, which is another aspect of this issue that is so important: we need to hear from more people who have lived experience of an eating disorder. Their speaking up and leaving behind the stigma that is still associated with eating disorders is so important, and I commend everybody who has come forward and talked about their lived experience. I understand how difficult that can be, but we need them to do it. All those working for SWEDA say that they wish they could have accessed help long before they were offered it. That is why such organisations are so important: they offer specialist therapy and support to people with eating disorders and body image issues before they become ill enough to need more intensive treatment.
However, those organisations cannot cope on their own. Waiting times for eating disorder patients are out of control, and waiting lists for children’s eating disorder services have doubled since March 2020. From 2021 to 2022, only 61% of urgent cases started treatment within a week—well below the current NICE standard of 95%. I hope the Minister will be able to respond to that. For adults, there are not even targets in place. The Independent has revealed that more than 80,000 adults with eating disorders are waiting to be seen for therapy—a record number—while just 30% of adults got treatment within four weeks of their referral. Again, I hope that the Minister will refer to adult eating disorder services, where we do not have any waiting list targets or targets for support. It is very important that adult services get the same support as children’s services, where we have made progress because there are targets.
Data from the eating disorder charity Beat showed an average delay of three and a half years between someone’s eating disorder symptoms emerging and their accessing treatment. That is simply not good enough. Targets are crucial if we are to tackle this epidemic. An access and waiting time standard for adults would provoke significant extra funding and focus. If we want to encourage people to seek help, we need to give them a guarantee that they will be seen.
Having clear standards can facilitate service improvements. Standards introduced in 2015 for waiting times for children and young people’s eating disorder services have been crucial in driving service improvements. However, similar standards have been lacking in adult services. Shockingly, sufferers are reaching the point of emergency hospitalisation before they can access care. Again, that is not good enough. It also costs a lot more money if we reach people only at that crisis point.
Clinicians have reported a significant increase in the proportion of young people first presenting when they are already severely ill. NHS figures show that hospital admissions for people with eating disorders in England have risen by 84% in the past five years. For children and young people, there was a 35% increase in the past year alone—and among men and young boys, hospital admissions have risen by 128%. There is an increasingly alarming picture that eating disorders in men and boys are being overlooked and not treated early enough. That is why today’s debate is so important.
Tragically, people are losing their lives. Take the terribly sad death of Zara Taylor after two years of struggling to get the right treatment for her eating disorder. An investigation by the Health Service Journal found that at least 19 lives were lost to eating disorders in England over the past five years. At least 15 of those were deemed avoidable and resulted in coroners issuing formal prevention of future deaths reports. Coroners described patients’ safety risks being missed or poorly managed because of limited knowledge of eating disorders among doctors and health professionals, and delays in accessing appropriate treatment. That is why it is so important to have more research into eating disorders, and focus on the more specialist and rare forms of eating disorders. Those same failings were among the key issues identified five years ago by the Parliamentary and Health Service Ombudsman in its report “Ignoring the Alarms”. Surely, we need to do more and to do better.
I was disappointed that the Government decided against publishing a 10-year cross-Government mental health and wellbeing plan for England. Instead, they have developed and published a major conditions strategy that would include mental health alongside other groups of conditions, including cancers, cardiovascular disease and dementia. That is not helpful. Compared with physical health, mental health has been a Cinderella service; for years, we have been asking for parity. If everything is put together again, we run the risk of losing special attention to mental health.
Can the Government not see that for targeted and varied issues we need targeted and varied strategies? I point them to Hope Virgo’s eating disorder manifesto, which calls on the Government to implement an evidence-based national eating disorder strategy, with a plan outlining how they will tackle the huge rise in people affected by eating disorders.
I want to single out Hope Virgo for her tireless campaign. She has made such progress in helping us to understand what it is to suffer an eating disorder and access services. She has continually engaged with us and Government in order to achieve improvements. She has done fantastically well. The strategy that she calls for should integrate obesity and eating disorder prevention plans, given the overlapping factors between the two. The Government should also look at reforming treatment approaches. I hope they are looking seriously at Hope Virgo’s manifesto and strategy.
A recent University of Oxford study found that using the integrated CBT-E—enhanced cognitive behaviour therapy—approach over the current in-patient approach reduced readmission rates for people with anorexia by 70% over a year. That means that we need to treat this as a mental health condition first and foremost, and to treat people’s physical health as a result of the mental health issues. If we do not tackle the mental health issues, we will not cure the physical problems.
The strategy should also include better training. According to Beat, 20% of medical schools do not include eating disorders in their teaching at all, while those that do provide less than two hours on the topic. Training should be compulsory in order to spot early signs of eating disorders. Many participants in a 2021 Beat survey reported having a negative experience when they first sought help from a GP. There are many brilliant practitioners in the NHS delivering excellent care, but I want every doctor to complete their training with the knowledge and skills to best support people with eating disorders.
The crisis in the NHS has decimated mental health services. Staff shortages are growing. According to the National Audit Office, between 2021 and 2022, 17,000 staff left the NHS mental health workforce. The Royal College of Psychiatrists 2021 workforce census shows that since 2017 there has been a 30% increase in the number of vacant or unfilled consultant posts in England. That is not good enough. How we can encourage specialists into services is a big question that the Government need to answer.
Eating disorder psychiatry has one of the highest numbers of vacancies, with just 28 full-time consultants. We need significant investment in staff retention. The RCP’s members report high workloads and poor work-life balance. NHS trusts should be supported to meet important improvement targets for retention. I hope that the Government will keep their commitment to publish an NHS workforce plan and that they will bring that forward early, along with adequate investment.
Mental health services need proper funding. This financial year, only 13.8% of local health spending has been allocated to mental health services, although mental illness accounts for 21.3% of the total disease burden in England. The money spent on young people’s eating disorder services has not kept up with the number of young people who need treatment. I support the NHS Confederation’s call for £12 million of additional funding to be made available over the next year to get children and young people’s eating disorder services back on track.
The funding that is provided needs to reach frontline services. An inquiry by the APPG on eating disorders, which I am proud to chair, found that 90% of the additional NHS funding given to clinical commissioning groups for children’s services did not reach the services to which it was pledged. We wrote to CCGs at the time, and the answers that we received were not satisfactory. The Government must ensure that their funding pledges are not empty words and that money is getting where it is needed. A one-off boost for children’s mental health services is not enough. Soaring demand for underfunded services will lead to children missing out on care.
We are all aware that the NHS is in crisis. We hear harrowing stories about ambulance and A&E delays, but the impact on mental health services has received little attention. I hope that today’s debate will make a difference and that we will hear more about the crisis in mental health service provision.
The Liberal Democrats firmly believe that physical and mental health should be treated equally in the NHS. Eating disorders are an epidemic. The sooner we realise that, the sooner we can treat them with the attention they deserve. No one should be condemned to a life of illness, nor should anyone be dying from an eating disorder in 2023.
* Caron Lindsay is Editor of Liberal Democrat Voice and blogs at Caron's Musings