‘I used to scream: For God’s sake, just eat!’
Guidelines to make sure families of people with eating disorders get better support have been launched by a charity. One family tells the Victoria Derbyshire programme how they struggled to get help after their daughter's diagnosis.
"When you don't know about the issue, it seems simple - just eat. I used to scream, 'For God's sake, just eat.'"
Kevin McCallion experienced a range of emotions when his daughter Roisin was diagnosed with anorexia aged 16.
"Firstly I denied that something like this could happen. Then I blamed myself - why didn't I pick this up? I wanted to fix it as quickly as I could."
Kevin, a head teacher, says getting help was initially "like wading through treacle" as they were given poor and conflicting advice.
"Looking back, we were wrong, initially. If I had my time again I would deal with things very differently."
It is estimated that more than one million people have an eating disorder, although campaigners believe the true figure could be even higher. Around three-quarters of them are female.
'Feel a fraud'
Roisin is now 23 and in her final year studying French and German at Oxford University.
"I can accept I have an eating disorder, there are still days when I think I'm a fraud," she says. "The bigger the impact on my life, the harder it is to deny it."
She has had to stay in hospital a number of times and found being away from her family and adjusting to a hospital regime very difficult.
"I rang my parents and told them to come and get me. They were strong and said it was what I needed to be doing," she said.
Roisin is currently receiving outpatient care and says the consistency of her treatment has helped.
What are the signs of eating disorder?
The charity Beat says the main signs to watch out for are:
- becoming obsessive about food
- changes in behaviour
- having distorted beliefs about their body size
- often tired or struggling to concentrate
- disappearing to the toilet after meals
- starting to exercise excessively
Her mother, Gabrielle, says she noticed Roisin's difficulties long before they saw a doctor, when she was around 11. Her diagnosis turned the family upside down.
"There were times it was terrifying - waiting to go into inpatient treatment when I didn't know if she could last," Gabrielle said. "The only advice we had was if we were worried, to take her to A&E. She was eating next to nothing. As a mum I felt very responsible as I'm the one who should make sure she was healthy."
'Work as a team'
GPs are often the first point of call for patients, who can refer on to specialist support provided by community mental health teams. This normally involves some form of talking therapy.
The charity Beat has conducted a study of families coping with an eating disorder which found they lacked support and needed better information. It has launched new guidance urging healthcare providers to follow eight examples of best practice to support families.
This includes ensuring optimum involvement of family members and support for them as soon as a loved one starts treatment and providing them with useful and comprehensive information.
Chief executive Andrew Radford said families should not have to go through the experience alone, or put their own health at risk.
"We are offering the NHS a practical framework to ensure that families and carers can play the best possible role in helping their loved one to get and stay well," he said.
Gabrielle believes such support would have made their experience a lot easier. "Perhaps it wouldn't have escalated as much as it has," she added. "At the start we were told to be firm and then later told that wasn't the way to be - there was conflict as we were told to push back and that was the wrong advice. I did a lot of reading and my own research."
Kevin says he tended to deal with practical issues and speaking to the professionals - such as ensuring her university did what was required - while Gabrielle was "far better at emotional aspects". "Dads can't sort this like other problems," he says. "We work as a team - both sides are needed."
What happens at an eating disorder service?
Some 19 patients with eating disorders are treated at the inpatient ward at Seacroft Hospital in Leeds - with the average stay around four months.
The Victoria Derbyshire programme went to meet those who have benefitted from the service.
Roisin says her family's support has been crucial to her continuing recovery.
"I was honest about it with my parents. I asked them to help me and they have been amazing. What strikes me is when I was really ill I didn't want support because it meant I had to keep trying when I wanted to give up. I didn't want to frustrate my family. Equally I wouldn't have got through everything without my family."
What advice would they give to others?
Gabrielle says talking to others is important - she found a support group run by Beat very helpful. Parents should consider their child and their disorder as separate entities, she said. "Roisin and anorexia are like two different people. She is not responsible for certain behaviour."
Kevin says: "Don't blame yourself and don't think you can fix this overnight - that's what I thought and that's what I got wrong. It's hard to accept that you can't just fix it."
The Department of Health and Social Care said mental health was a key priority.
A spokesman said: "It is vital that anyone with an eating disorder can access specialist treatment as quickly as possible. The NHS long term plan commits to improving community-based mental health care for adults, including eating disorder services, backed by an additional £2.3bn every year in real terms by 2023-24."