Dad tells of anguish after anorexia claims daughter
The father of a talented runner who died from anorexia has spoken about letting go of his anger towards the health service – and working to ensure other families do not endure the same agony.
Simon Brown told the Cambridge Independent he was advising local eating disorder services on providing the early intervention that could have saved his daughter’s life.
And he hopes his daughter Emma’s legacy will be improved treatment for other sufferers.
Mr Brown said: “Emma’s descent into this illness is almost too difficult to imagine if you have not been through it. It took about a year from when she started becoming ill to when she first got treated.
“The GPs at the time really didn’t know what they were doing and we got really poor advice.
“The most challenging aspect was we were on a waiting list to be seen and then when we were seen, we were told Emma wasn’t ill enough and that there was a waiting list of people ahead of her that were far more ill than she was. I’m not disputing that was true, but that meant we had months and months where Emma was declining in front of our eyes.
“She lost half her body weight. She stopped eating, literally. The only thing we could do was get a pipette of water into her mouth. It was just horrendous. Just how ill at that time she had to become before there was any kind of help offered was unbelievable. What we know now is the best chance to help someone into recovery is the first chance and that this kind of waiting has to change.
“People should be seen within weeks, not months, and helped straight away rather than having to descend the way that Emma did into this state in which she would go through cycles of recovery and then decline.
“Initially those cycles might last four to five months but by the end it was a weekly occurrence.”
Emma, 27, was found dead in her flat in Cambourne by her mother on August 22, 2018 after struggling with the illness since her early teens.
She was one of five anorexia patients who died while being treated in the East of England between 2012 and 18.
An inquiry at Huntingdon Town Hall heard Emma had been diagnosed with an eating disorder after she was bullied at school. At the inquest, which ended on Thursday (January 23) Miss Brown's mother, Jay Edmunds-Grezio, described how her daughter would run 15 miles a day to maintain her low weight, at one point she had hoped to be an Olympic runner.
Her father added: “Emma became ill when she was just turned 13. If she had died within the first two or three years of her illness, which many patients do, I think at that time we would have been really angry. I think now the family has been pretty much destroyed by this and we have had to rebuild it, the anger has gone and has been replaced by the fierce determination to do something about it.
“I want to make sure that rapid early intervention is available to people so that help in the community is structured and available and funded and people have somewhere to go, not just the patients but the families and the siblings, to learn the skills needed to help someone who has this illness.p.
“I wouldn't know who to be angry about now. The GP at the time was an old guy who didn’t really know anything about the illness. That means we have to educate GPs about the illness. The bullies that got involved and were the trigger for Emma, I'm sure if they had known the consequences of what they are doing they might have stopped. Bullying is horrible, it happens and schools have to get better at stopping. But I can't be angry that it doesn't solve anything.It becomes quite destructive.
“It's very easy to become selfish and say why this is happening to me and that is just a very destructive thought to hold.
Actually when your life is difficult you are learning more than people who have an easier life. I know that sounds weird but these challenges become sources of strength if you face them properly.”
A post mortem examination recorded Emma's cause of death as lung and heart disease, with anorexia and bulimia nervosa as contributing factors.
Emma was among five anorexia patients to die who were treated by Cambridgeshire and Peterborough Foundation Trust between 2012 and 2018.
Although coroner Sean Horstead has not formally linked the cases, he has described them as a “cluster of deaths”.
At Emma’s funeral, Simon was approached by her consultant to help advise on new pans for best practice in treating anorexia patients. He has welcomed the opportunity to make a difference.
He said: “I’m trying to create some good out of all the 15 years of struggle that Emma had because anorexia is a pretty horrible way to die.
“We have to find a way of getting to the truth of what happened in all of these cases. I think the coroner is incredible. He really pushes for the truth. We have to go through this process with open eyes and ears and a shared pursuit of what the hell happened and what can we do differently and better and how can that get learnt so it doesn't happen again.
“All any parent wants is for something to change as a consequence of what happened to them and their kids. You can only do that with transparent pursuit of answers and that means admitting mistakes.
“I'm not pouring blame on people because I want people to understand how difficult this is and to be supportive of doctors and to get resources into the service.”
He added he was grateful for the compassion shown to Emma by the doctors and nurses who treated his daughter.
“We need more people to opt to work in this really difficult area and there's a danger if we get really critical on too simplistic a level it becomes harder for the best people to join the service.
“I want to try to make heroes out of these people so that more people want to take on the challenge of meeting really difficult patients with eating disorders because one aspect eating disorder patients is that they are often uniquely gifted and super intelligent .
They are super driven. Emma was an olympic level runner, she was driven, obsessed a perfectionist, and artistic at a level where her work is never good enough even though it's perfect; t's that kind of a character you are dealing with. She was challenging because of the unique levels of drive and availability she had.
When all of that ability and drive turns against itself you it's a really tough situation.”
Separate inquests are due to be held for Amanda Bowles, 45, who died in September 2017, 18-year-old Madeline Wallace, who died in March 2018, and Averil Hart, 19, who died in December 2012.
An inquiry into the death of 24-year-old Maria Jakes, who died of multiple organ failure in September 2018, concluded last month that insufficient monitoring of her condition might have played a part in her death.
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