Not thin enough for treatment – Wera Hobhouse highlights stigma around eating disorders

In a parliamentary debate on Tuesday, Wera Hobhouse outlined how sufferers of eating disorders are being failed by health and support services. Lack of training can mean that doctors make things worse. She told the story of a young woman in her constituency who suffered for three years and never received the help that she needed.

Her aim was to look at the stigma around eating disorders and suggest solutions – one of which was the Lib Dem policy of giving young people access to child and adolescent mental health services until the age of 25. Here’s her speech in full:

We probably all know at least one sufferer or ex-sufferer of an eating disorder. As one put it to me, eating disorders are the easiest thing to get into and the hardest to get out of. We have come a long way in recent years, but we are nowhere near to providing lasting, successful treatments for hundreds of thousands of people. Many people are suffering alone and in silence, without a support network. We are failing as a society to support people in their deeply personal battles.

This debate is about stigma. There are two stigmas around eating disorders—that from outside and that which sufferers feel themselves. The result is that people often wait a long time before asking for help.

It takes an average of 58 weeks from someone realising that they have a problem to them seeking help from a GP. That is more than a year of self-doubt, self-loathing and self-harm. On average, it is a further 27 weeks until the start of treatment. Add to that the time that the person has suffered with a disorder before admitting that there is a problem and we start to see the real picture.

Anybody who has had a close family member in such a situation will understand the hon. Gentleman’s point, but families are often pretty helpless too, if they do not really understand what can be done and how they can help their family member to get out of the problem. It is a form of addiction, and like with any other addiction, family members are co-sufferers. They want to help but do not really understand the deep-seated problems. Family members are important, but we need the professionals and their understanding to help families get through together. The hon. Gentleman is absolutely right that families are incredibly important.

Eating disorders define large periods of people’s lives. How can we shorten that time? We need people to be okay with saying, “I’m not okay.” We need to tackle the stigma around eating disorders, and the message needs to get through to a lot of people. More than 1 million people in the UK have an eating disorder; three quarters are women and one quarter are men. That is a very large number, plus there are the friends and family who suffer with them. So many people with conditions such as anorexia and bulimia blame themselves. It is not their fault and we need to make sure that they know that.

When I announced on Twitter that I was holding this debate, I received a wave of emotional responses and personal stories. Yesterday, a local doctor dropped into my office a book that she had written, which described her fight with eating disorders since the age of 13. That shows how early it can start.​

I also got an email from a young woman called Lorna, who experienced serious anorexia while studying in my constituency in Bath. This is what she told me:

“I ended up with an initial diagnosis of anxiety and depression, and was started on antidepressants. I suspended my studies and worked as a carer in my local village, living at home with my mum and brother. People I’d known all my life began commenting on the weight I’d lost, and telling me how good I looked. This is when my anorexia began to take full hold.

I stopped eating completely, lying to my mum and saying I’d eaten at work, began over-exercising compulsively, and remember pacing the corridors at work to burn extra calories. I became obsessed. I weighed myself up to 12 times a day.

My mum was terrified, and didn’t know what to do. Eventually she came with me to my GP and I told him everything. I told him I was petrified of putting on weight, exercising excessively and skipping nearly every meal. His response was ‘Oh, that’ll be your antidepressants.’ He took me off a high dose, there and then. Cold turkey.

Each time…I told him how out of control I felt with my eating. He’d force me onto the scales, shaking and crying, and then tell me my BMI was ‘healthy’ and I didn’t meet the diagnostic criteria. I was devastated. I had opened up and was denied help. I never got diagnosed with anorexia, despite going from a size 16 to a size 8 in less than a year.

I went through the monthly humiliation of being dragged onto scales and told I wasn’t thin enough to be helped yet. And not having that formal diagnosis is hard. When I tell people I was anorexic, they never quite believe me, as even doctors didn’t. I think they always assume I was being dramatic, or ‘it wasn’t that bad then’. Today, I am weight-restored, although struggle with now being overweight.

It took me 3 years to recover. 3 years of misery and obsession. I was dangerously unwell, but not sick enough to get an ounce of support.”

When I read that story, I am amazed by how brave Lorna is. She was brave to ask for treatment and even braver to put her trust into the medical system a second time, even after she did not receive the treatment that she really needed. She was very brave to tell her story. Lorna has gone on to campaign for proper treatment for eating disorders. She is here in the Chamber, and I want to thank her personally for letting me share her story—Lorna, thank you. I am so sorry that you had to go through such an awful experience. I know your words will help others, and I desperately hope that together we can improve the treatment and care of those with eating disorders and end the stigma for good.

We cannot ignore the medical failings in Lorna’s story. We need to use them and the figures that prove that Lorna’s experience is not an isolated case. First, we need to break the stereotype that all people with eating disorders are underweight. Hope Virgo’s campaign to “Dump the Scales” was also a response to being told that she was not thin enough to receive support. She is calling on the Government properly to implement the eating disorder guidance delivered by clinicians, a call that I strongly echo along with over 60,000 signatories to her petition. To judge an eating disorder simply by BMI is not good enough; rather, we need to look at the trend and rapidity of weight loss and the story that sufferers tell.

We know that the Department of Health and Social Care knows this is an issue. We know that if we fail to take action, people not only suffer but, in some cases, ​lose their lives. When questioned on waiting times, the Minister often says that the Government do have targets, but he ignores the fact—or he does not tell us—that there is none for adult services. On average, adults wait twice as long as people under the age of 19. The Government must do everything to remove barriers to treatment. In particular, young adults are incredibly vulnerable. At our autumn conference, the Lib Dems called for the Government to ensure that all young people can access young people’s mental health services up to the age of 25, because from the age of 18 many young adults move out of home, go into further education or start their first job, all of which can be stressful when they no longer have support from home. We must also introduce waiting times for adults to ensure that they receive help as quickly as possible.

The Minister is likely to mention that in 2015 the Government allocated £30 million of extra resources per year for five years to improve the NHS treatment of eating disorders for teenagers. However, in some cases that is not reaching the frontline, because the funding is not ring-fenced and can be diverted to other priorities.

Funding for eating disorders must be properly ring-fenced, because it is just too easy for trusts to use that money to plug other funding gaps. If we fail to do that, we end up with tragic deaths such as that of Averil Hart, which prompted a Parliamentary Health Service Ombudsman report. She was completely failed by the system. The report not only called for parity of adult eating disorder services with child and adolescent services, but stated that:

“The General Medical Council (GMC) should conduct a review of training for all junior doctors on eating disorders”.​

Research conducted by Dr Agnes Ayton in June 2018 shows that, on average,

“medical students receive less than two hours of teaching on eating disorders”

throughout the entirety of their undergraduate training. Some 20% of medical schools do not include eating disorders in their curriculum at all. Of the medical schools that do include eating disorders in their curriculum, 50% do not include in eating disorders in their examination.

In the end, it comes down to the priority that we and the medical profession place on mental health and its treatment. Making mental health a priority and giving it parity with physical health is more than a slogan; it requires understanding and some new thinking. If somebody breaks their arm, we do not sit around for a year and then put on a cast; we treat the broken arm immediately. We need to act quickly to treat eating disorders and mental health in general. If we wait too long, these illnesses can become severe and entrenched—they can last for many years and often have a massively debilitating effect on sufferers and their families. The earlier the intervention, the more likely it is that sufferers will make a full recovery.

In Bath, we have a not-for-profit social enterprise called Brighter Futures, which is funded by child and adolescent mental health services and which provides special services for children and young people. The 30-plus practitioners do an amazing job, but their funding has been cut in half. Such services are perfect opportunities for early intervention to treat eating disorders, but if they are not properly funded, young people will slip through the cracks. Charities are now trying to fill the gap. The Somerset and Wessex Eating Disorders Association is one such charity—the only charity between Cornwall and Norfolk that works in this field. It is based in Shepton Mallet and sees clients from a wide area: from Somerset to Bath, Bristol and Swindon. People self-refer to the service; they do not need a diagnosis. The association is very much pro-recovery and self-help.

There are people all over the country who do not have any access to such services. There should not be a difference in the level of service that people receive, depending on where they live—we cannot leave this to a postcode lottery. Clearly, we need to do better. It is obvious that services are patchy at best, and that people have to travel much too far for treatment and wait too long to be treated. Others really need help but fall under the threshold for treatment.

It is not the just the Government who should act to tackle eating disorders. The focus of this debate is stigma and how we can reduce it. Each and every one of us can help. Eating disorders are widespread, but they continue to be kept secret by so many sufferers, who fear being judged negatively by others. They see themselves as defective and as not meeting societal standards. They feel disgust and self-loathing about their appearance, eating or purging habits, or they worry that disclosure will result in their difficulties being trivialised. The stigma is perpetuated by general ignorance of what eating disorders are. The first step to challenging stigma is providing better education—it is not only our future doctors and health professionals who need to be better trained, but the general public. A successful strategy to reduce prejudice is for people to come forward and tell their stories. Such stories break the silence and the shame. That is why we so desperately need people such ​as Lorna and Hope, who are brave enough to come forward. I thank them for being here and telling their stories. Together, we can end the stigma.