No NHS bed in 300 miles for our anorexic daughter

When their daughter fell dangerously ill five weeks ago, Stephen and Julia Hollings hoped that the health service would be there to help them.

After a long battle with anorexia, Fiona Hollings, 19, had lost weight at such an alarming rate that her desperate parents feared she might die.

But their torment was worsened when the local NHS team responsible for her care said demand was so high that no specialist bed for eating disorders was available across the whole of England and Wales.

As an interim measure, Fiona was admitted to a general mental health ward, but her condition continued to deteriorate. Finally, more than three weeks later, a specialist bed was found — around 330 miles away in Glasgow.

Stephen, 54, a former head of marketing for Honda UK, who lives near High Wycombe, Buckinghamshire, said: “It’s not about anger. I am heartbroken. We were desperate and we are still desperate.

“When your child is deteriorating and you are told there is not a specialist bed available in all of England and Wales, you feel powerless and ineffective.

“This is not right. You shouldn’t have to travel hundreds of miles for treatment. There will be hundreds of other girls waiting for treatment being told it is not available or they will have to wait. This needs to change.”

Julia believes psychological therapy could have helped her daughter. Fiona was assessed and told she was eligible before her admission to hospital, but the waiting list was a year long. “Hospital was the last resort, but if we had been able to access better support sooner, it might not have been necessary,” said Julia. “A year’s waiting list for treatment is pointless if someone has stopped eating.”

About 725,000 people are believed to be affected by an eating disorder in Britain, and the healthcare costs are estimated at up to £100m a year.

Anorexia nervosa has the highest death rate among all psychiatric disorders. The number of young people admitted to hospital for eating disorders has risen by more than 40% over a decade from 1,910 in 2006-7 to 2,703 in 2015-16.

With that rise, a nationwide search for a bed in a specialist unit is almost routine in mental services. A report published by the BBC in May found that almost 5,500 mental health patients had to travel out of their area in 2015-16 because of a lack of beds. Some had made journeys of more than 200 miles.

Last week, the government set out plans to provide an additional £1.4bn for children’s and young people’s services, but it faces a legacy of underfunding. The extra money will not cover those who, like Fiona, are 18 or older and are the responsibility of adult mental health services.

Paul Farmer, chief executive of the mental health charity Mind, said: “It’s unacceptable for someone who is so unwell to face a combination of a very long wait time and treatment a long distance away.

“There is now a good commitment to invest more money, but we are suffering the consequences of decades of underinvestment. As the stigma around mental health starts to recede, we are beginning to see the true scale of the unmet need for people.”

A year’s waiting list for treatment is pointless if someone has stopped eating

Fiona, who has two sisters, was a bright youngster with a love of sport and a close circle of friends. Described by her parents as “such a card” because of her love of a good joke, she was called “the Pasta Queen” by her family because of her fondness for the dish.

She was 15 when the nightmare of anorexia descended. While some people with anorexia go into a slow decline, Fiona’s illness was, according to her parents, like “falling off a cliff”. She secretly stopped eating and it was her friends, rather than her family, who first became seriously concerned for her health.

“Her friends had found out that she was not eating anything during the day. I was giving her lunch boxes and they were being thrown way,” said Julia.

“She was referred to the school nurse and the same day the nurse phoned us up and said, ‘We are referring her to [children’s mental health services].’ We were there before we even knew what was happening.

“The mental health team came to our home every day and were superb, but we were all a bit in denial. We did not think this was happening. We thought this happens to other children, but not ours.”

Fiona returned to school the following term but felt overwhelmed and soon stopped attending. She studied for her GCSEs at home and, despite her battle with anorexia, achieved A and B grades.

But Fiona’s condition was not improving significantly, and her family struggled to cope with the self-destructive illness.

With tears in his eyes and his voice choking with emotion, Stephen described calling the mental health team to say that his daughter needed to be admitted. “For a parent it is one of the hardest things to say. ‘We can no longer keep our daughter safe and we don’t know how to cope.’ It is horrendous,” he said.

Fiona was admitted to a psychiatric unit for young people in Southampton, about 70 miles from her home near High Wycombe. During her five months at the unit she felt safe and began to stabilise, but the teenager was then told that she could no longer be looked after there because she was about to turn 18. She was terrified about being transferred.

Stephen recalled: “We said, ‘Please don’t do it on her birthday.’ We said it was inhumane. There were no beds available and we didn’t know where she was going.”

Fiona was transferred the day after her birthday to an adult psychiatric unit in Aylesbury, Buckinghamshire. Her parents say they were not permitted to travel with her.

“She was encouraged into the ambulance and when she came out the other end she panicked,” said Julia. “Her description is she was set upon by a number of people to pin her down. She was then put into an isolation unit to calm down. She has nightmares about that.”

The next month, Fiona returned home. Her parents say she was still “struggling with food” and still clearly needed help. She was assessed this spring for psychological help and was told she was eligible. It was a potential lifeline for the family.

“I went with her to see the doctor and she said, ‘We would love to offer you this, but it’s a year-long waiting list,’” said Stephen. “I said, ‘You might as well say it’s not on offer.’ A year for an 18 or 19-year-old is a life.

“I was seriously worried over whether Fiona would even survive for a year. The problem was getting worse and worse.”

Fiona continued to decline and was admitted to a mental health ward at Warneford Hospital in Oxford on June 18. She was later admitted twice to the John Radcliffe Hospital in Oxford, returning each time to the Warneford Hospital. She was finally transferred to the specialist bed for eating disorders she required in Glasgow 10 days ago.

This weekend the Hollingses are in Glasgow to give their support to Fiona and are equally committed to improving mental health services for all those who face a similar plight.

The couple said they wanted to see resources double for eating disorder care. They also plan to raising funds for a centre for excellence for eating disorder care.

Ulrike Schmidt, a professor of eating disorders at King’s College London, has described long waiting lists as “toxic” for patients with anorexia.

She said the government was giving money to child and adolescent eating disorder services for those aged under 18, but those above that age could face significant waits for treatment.

Tom Quinn, director of external affairs for Beat, the UK’s eating disorder charity, said: “It is welcome that funding has been allocated to child and adolescent eating disorder services, but we are concerned that no additional money has been allocated for those over 18, as we know many adults are struggling to find treatment.”

NHS England said the extra £1.4bn of funding for young people’s mental health services would help eliminate “out-of-area” placements and ensure patients get “better care more quickly”.

Oxford Health NHS Foundation Trust, which is responsible for Fiona’s care, said in a statement: “Occasionally patients may need to be admitted to non-specialist units. When this happens, our specialist eating disorder staff work to support the patient with their eating and care planning.

“Even more occasionally, patients may need to travel further afield to access beds, but it is extremely unusual for a patient to have to travel as far away as Scotland. Our staff are liaising closely with colleagues in Scotland and working to offer a local bed as soon as possible.”

The trust said it was also working hard to reduce waiting times for psychological therapies.

Sunday Times 24th July 2016