The Telegraph: Eating disorder patients should be given home visits, say grieving parents
Home visits from medical professionals would help seize the "window of opportunity" before sufferers hit a downward spiral, say parents
15 February 2020
Eating disorder patients should be given home visits to seize the "window of opportunity" before they hit a downward spiral, say grieving parents, as they join a peer's call for an overhaul of support services.
Anorexia and bulimia sufferers need one-on-one care in an environment they feel comfortable in, as this helps build trust and gets better results than being admitted to hospital, they argue.
Simon Brown and Nic Hart, who both lost their daughters to anorexia, believe if they had been called on at home this could have helped stop the illness forming an iron grip.
Their calls come after Baroness Parminter, the Liberal Democrat peer, gave an impassioned speech to the House of Lords earlier this month revealing her own daughter suffers from anorexia.
She said there had not been enough progress in improving the care of those tortured by the life-threatening disorder.
Mr Brown's daughter Emma, 27, died at her flat near Cambridge just days after discharging herself from hospital.
Speaking on what would have been his daughter's 29th birthday, he told The Telegraph: "Outreach into a person's home is vital as it provides a window of opportunity to support someone struggling in their own environment, in 'their world'.
"It enhances engagement, builds trust and the outcomes have proven that it works."
Emma Brown, 27, died at her flat near Cambridge just days after discharging herself from hospital
Mr Hart's 19-year-old daughter Averil was found unconscious on the floor of her university flat in Norwich just ten weeks after embarking on a creative writing course.
He said: "My feeling is that monitoring of high risk patients at home would provide an invaluable safety net and may well have saved Averil’s life.
"The lack of proper monitoring by the team looking after Averil was highlighted as a major contributory factor by the Ombudsman who investigated and produced a national report into Averil’s death in 2017.
"It was clear from Averil’s medical notes that neither the GP practice nor the specialist care team had recognised Averil’s dangerous decline and weight loss.
"In fact, as the cleaner of Averil’s university flat told me, before Averil was found unconscious, she could barely walk up the stairs to her flat."
Debbie Watson, who battled anorexia for 20 years and founded eating disorder charity Wednesday’s Child, agreed that working with suffers in their own homes is crucial in "interrupting" their destructive behaviour.
“Sadly, until the healthcare system takes a new approach to reaching hand and heart in the direction of those who are living with this devastating illness, we’re going to see many more people deteriorate, exist in a life of compromised mental health – or die," she said.
“Today’s model is still based largely on being offered regular appointments at a GP, getting on a waiting list for further counselling or CBT, or holding out for a bed in residential if your case is deemed severe enough.
“The gap is in that ongoing care in the heart of the community – the very work which will support families and individuals to stay well and maintain a sense of worth, or a belief that a commitment to recovery is worthwhile.
“We have to remember that an awful lot of people with eating disorders become entrenched in their behaviours and experience social anxiety, so if we can go another step toward supporting them by being empathetic and accessing them in their home environment, it’s a valuable tactic which could allow for positive intervention."
An estimated 1.25 million people in the UK suffer from an eating disorder.
Averil Hart and Emma Brown are among five young women whose deaths are being investigated by a coroner following warnings of a growing crisis over the way anorexia sufferers are treated within the NHS.
Baroness Parminter told the House of Lords: "One of my daughters suffers from anorexia. We have experienced NHS eating disorder services both for children and young people and for adults in the community, and specialist in-patient care, and it is clear to me that while advances have been made, insufficient progress has been made to date in improving the care for people suffering from these life-threatening diseases."
She said waiting time targets for treatment are in place for children and young people, but not adults; training must be improved so medical professionals can recognise the signs of someone suffering from an eating disorder; more money must be ploughed into researching the condition; workloads must be better managed so excellent staff are retained; and that the woeful lack of beds for sufferers must be addressed.
Mr Brown praised the speech, saying: "I ticked off all the things she said - more training, shorter waiting times. It's the most deadly mental health illness and incredibly difficult to treat, particularly the longer it's left.
"The opportunity to get in there and do something is narrow and early.
"Doctors and nurses in the eating disorder service are a pretty extraordinary bunch. It takes a lot to work in this field because the illness is so difficult to treat.
"They're hard to deal with. Emma was very tired and abusive towards people who cared about her because she feared recovery. She would sabotage and fight - she was so clever.
"It was torture, it was horrendous - the things it does to family and siblings. I don't think people understand how tortuous and destructive this illness is unless you've been through it. It's really hard to describe how bad it is.
"Yet there's no sympathy for it - no money, research numbers are horrendous. It's killing talented, driven people and doing it in a horrendously cruel way.
"Let's make sure lessons are learned. Let's get behind the changes the baroness is calling for."
Mr Hart commended the baroness for bringing a "human dimension" to the issue.
He said the Mental Health Act also needs to be revised to protect eating disorder sufferers.
"Mental capacity is deemed to be there if someone understands what is being told to them," he said.
"In Emma's case, clinicians say 'do you realise that if you don't eat you may die?' and she invariably said 'yes'.
"The Mental Health Act doesn't cover that they may understand it but their capacity to do anything about it is seriously hampered.
"They don't have the capacity to make changes. Averil sat for hours trying to eat a bowl of porridge at her university flat because she knew she would die, but she didn't."
The charity Personalised Eating Disorder Support (PEDS) is dedicated to helping those struggling with eating disorders - click here to find out more.