Dad of young woman who died from eating disorder warns more families will suffer without widespread change

Emma’s struggles began aged just 12 when she started being bullied. As a result she turned to diet and weight loss but in six months was taken to hospital unable to walk - the first of 13 long term hospital admissions.

A talented runner who easily won county cross-country championships and who trained with Paula Radcliffe’s former coach Alex Stanton, Emma eventually resorted to running 15 miles a day to keep her weight down.

During her ordeal she would be taken weekly to A&E, spent a time sleeping rough and left school having never been well enough to even sit an exam before struggling to hold down a job.

And as her illness progressed she went through periods of criminal behaviour. Emma would steal thousands of pounds from her dad Simon to spend at her favourite restaurants (several hundred pounds a day at one stage), only to make herself throw up as she deliberately tried to deplete her body of much needed nutrients.

A post-mortem examination gave her cause of death as lung and heart disease, with anorexia and bulimia nervosa as contributory factors. The coroner at her inquest, Sean Horstead, also gave personality disorder as a cause of death.

“She was a bit of a rebel, the sort of person who could be a Prime Minister or top lawyer,” recalls Simon.

“The coroner used a phrase which struck with me - ‘the tragedy of this illness is not just the loss of life, it’s also the loss of potential’.”

Although consumed by grief, Simon has used the time since Emma’s death to raise awareness over an under-reported and misunderstood illness and help change the way the illness is treated to stop other families suffering in the same way.

It is why he is calling on the Government to invest in more front-line and community services, improve education and training and start recording accurate data on a mental illness which ends up killing one in five sufferers.

“If we can work together to do something about this, Emma’s suffering has meaning and relevance. That would be her legacy,” Simon told the Peterborough Telegraph.

“Until we get the funding we will get more of these stories - and that’s unbearable.

“After Emma died I invited some of the people who treated her to her memorial service.

“I got into a deep conversation with the guy who head up the eating disorder service and had tried to help Emma for 10 years.

“He said Emma was one of, if not the most, challenging patient he’d ever had to deal with, but that the lessons learned could help treat other difficult patients.

“He said ‘when you’re ready come and talk to me so we can use Emma’s story to help other people’.”

Emma’s death was not a result of medical negligence but a heart-breaking insight into a cruel mental illness which, for many, lasts a lifetime.

And her story is even more relevant now with referrals for eating disorders climbing during the coronavirus pandemic, a worrying trend which Simon believes could lead to severe consequences unless urgent action is taken.

“There is an epidemic of people not coping with their lives who end up seeking control through an eating disorder, become critically ill, and 20 per cent of them die prematurely,” he explained.

“Of those who recover, half recover ‘fully’ - although I don’t think anyone recovers 100 per cent.

“The cruel nature of this illness is some people die relatively quickly, while others like Emma can face 15 years or more of torture. This is an agonising condition to suffer from. It inflicts pain and suffering, destroys families, alienates friends and kills one in five eventually and destroys the lives of another 30 per cent.

“I don’t think people realise how prevalent this is. A recent survey identified that around 16 per cent of the adult population are at risk of an eating disorder - the stats are horrible.

“Another contributory factor is the risk of eating disorders to suicide. It is one of, if not the biggest, contributory factor for female suicides, while 72 per cent of people with an eating disorder also self-harm.

“It’s a hugely destructive illness. There needs to be a raising of awareness of how damaging and cruel and destructive this is.

“The way people die is awful - Emma wanted to live but couldn’t fight the illness. It’s almost too much for people to deal with and there’s a lack of compassion. People think it’s a dieting issue or a choice - it’s not, it’s a mental illness.

“It’s little to do with food, it’s about control and affects people like Emma who are very driven, high achieving and perfectionists who lose control over that ambition and resort to an eating disorder for control.

“We don’t blame people who have cancer as it isn’t a choice - and this isn’t a choice.

“We have this tidal wave of illness hitting us and the NHS with the charity sector is urgently trying to respond to that.”

Simon is currently a trustee at Peterborough charity Personalised Eating Disorder Support and is part of an NHS steering group led by the Cambridgeshire and Peterborough NHS Foundation Trust which is piloting a new approach to tackling eating disorders in the East of England.

It is through these unpaid roles that he has seen first-hand the changes which need to be made to the system, changes which were highlighted by Mr Horstead who conducted the inquest into the deaths of five young women from Cambridgeshire and Peterborough who died from eating disorders, including Emma.

Mr Horstead has since written to Health Secretary Matt Hancock outlining concerns including: inadequate training of doctors and other medical professionals, a lack of commissioned provision to monitor patients and a lack of “robust and reliable data regarding the prevalence of eating disorders”.

He said he was “concerned that there may also be a significant under-reporting of the extent to which eating disorders have caused or contributed to deaths” and that the outlined problems could be “significantly exacerbated” by the Covid pandemic.

For Simon, there needs to be a huge culture shift in how eating disorders are thought about and treated, as well as greater training and ringfenced funding.

“A trainee doctor will get 16 hours of training for eating disorders,” he said.

“The people who choose to go into this area of medical practice need medals because they’re confronted with patients who will almost always be smarter than them. And they fear recovery - no other illness does this.

“You have an under-resourced service facing patients who retain their attachment to this illness as it gives them control.

“Emma’s problems started when she was bullied, but by the time she was 27 and dying it was the fear of losing her illness, it was the fear of treatment, which meant she could not fight hard enough to live.

“It’s a unique and vicious illness.

“You can go into just about every secondary school in the country, go into Years 7 and 8, and find between one and five kids at high risk of an eating disorder.

“You find a high achiever in sport or academics who is being bullied because of it - the risk is there. We need to make schools aware as the consequences are dreadful.

“If we do detect the risk early the treatment is effective. No one should die from this illness. If we can get in early we can put in effective treatment and help them lead well lives.”

One problem is how sufferers are supported to put on weight, only to be discharged back into the community where they are at high risk of relapse - a problem which Emma suffered from.

It is an area PEDS - co-founded by Mandy Scott and Sue Rattle - is trying to lead on with a nurse-led service offering long-term support, as well as education being delivered to schools and GPs.

“The results for people that use our support are really fantastic,” Simon said. “We know people can be helped to recover and go on to live amazing lives. We can help them see that they have a life to get well for.”

“If we could replicate Sue and Mandy across the country with support workers we could tackle this illness.

“We need other organisations to help us build that nurse-led approach. The NHS is fantastic with commissioning - it has great GPs, specialist doctors, nurses and care workers - but we need to go beyond that.

“The eating disorder services in Cambridgeshire is really embracing the approach working with charities like PEDS to give support to recovery, and not just for people in crisis.”

The key to expanding and improving this approach will, naturally, be funding, while PEDS is also urgently appealing for funding.

“Absolutely we need to put money into a number of areas,” Simon continued.

“It’s an under-researched illness. We need funding for research and to get the data for this. People die from heart failure but it’s the eating disorder which has caused this failure. Until we register this we won’t know enough.

“Of course we need funding for recruitment, but it’s also education. The General Medical Council needs to train people properly on eating disorders and the message about eating disorders needs to change - there needs to be compassion and empathy.

“The Government says it spends ‘x’ amount on mental illnesses, but it’s not ringfenced for eating disorders. We’ve got to raise our game on eating disorders from research to understanding to vacancies in the sector to education so people understand it’s an illness and not a choice. That they need help and not to be told to lose weight before they can access treatment.

“There are amazing third sector organisations which need money to do what they do. There are too many volunteers giving up their time and we need more workers, nurses, dieticians, therapists and coaches.

“This will challenge you, but the reward is incredible.”

It is a powerful argument - one which could have been put forward by a top lawyer, or even a Prime Minister.

The CPFT First Response Service is available 24 hours a day, 365 days a year to those in Cambridgeshire and Peterborough who call the NHS 111 helpline and select option 2.

To contact PEDS or to donate, visit: https://www.pedsupport.co.uk/.