Terri Fortune died of anorexia in the UK after failing to get treatment here.A father, whose daughter was 'one of the lucky ones', speaks out about Ireland's 'abysmal' eating-disorder services
THOMAS Glowatzki was at his wit's end. Five years ago, he watched helplessly as his daughter Lily began the slow process of dying before his eyes from anorexia. No one in Ireland would help him. He tried in vain to get her one of three public beds at Dublin's St Vincent's hospital for people with eating disorders. Despite her condition, Thomas was told the waiting list was 18 months. He then brought his daughter, who could barely travel the distance from their home in Cork, to the two Dublin private hospitals that treat people with eating disorders, St John of God and St Patrick's. No room at the inn.
"I got on the internet. I found a private hospital in Germany that helped people with eating disorders. I got in touch with them and described Lily's condition. They said there wasn't a moment to lose and I shouldn't wait another day. We flew out to Seepark Clinic near Hamburg on the next flight."
The journey was an arduous one. Lily had become so ill that she'd lost much of the hair from her head while her body hair had begun to grow.
"When the doctor saw her, he was shocked and said if he'd known she was so bad, he would have advised us to not travel."
Long road to recovery While Lily had seen many doctors over the past four years to treat her anorexia, she received her first thorough medical examination at the clinic, according to her father. Her condition was more serious than anyone realised - Lily's heart muscles had shrunk and were beginning to suffocate her heart. "She could have dropped dead at any moment. If we'd stayed in Ireland, Lily would have died. If we hadn't the money to bring her to Germany, she would be dead."
For the first six weeks of her three-month stay at the clinic, Lily was confined to a wheelchair. Thomas stayed with his daughter as she began to recover and saw how she benefited from its multidisciplinary team of doctors, dieticians, physiotherapists, counsellors and psychiatrists.
At the clinic, Thomas, in his own way, began a process of reflection and came to terms with Lily's illness, something he says was vital to her recovery. "Eating disorders are a hunger-strike for love. She just starved herself to death to make us wake up. She said to me, 'Dad I had to almost die to get to you wake up. You did and I'm glad of that'."
For many years, her illness put considerable strain on Thomas, his wife Irene and their younger son Felix, who was 15 when his sister went to Germany. "Everything was about food, dying and the hospital. It was a nightmare. Food is one of the main needs of your child. When you provide it and they refuse it, it's impossible to understand. You blame yourself."
But Thomas was worried about bringing Lily home. Since her illness became apparent at age 14, he says the thrust of the advice he got from doctors and dieticians was:
"Here's a diet plan, bring her home and eat."
Before returning home, he contacted the Marino Therapy Centre in Dublin, a private facility partly funded by the Health Service Executive (HSE). It remains the only dedicated centre in the country to provide counselling and a multidisciplinary approach for people with eating disorders.
When she came home, Lily and her parents stayed in a B&B nearby for a few weeks while she attended the centre daily. As her rehabilitation continued, the family went back to Cork and Lily travelled up to Dublin once or twice a week, and today, still attends every couple of months.
"It really just made me realise how bad things are here. There really is nothing for people with eating disorders living outside of Dublin. It is a long trip for someone to make up and down to Dublin who is weak from illness due to an eating disorder."
Three public beds, 200,000 sufferers When Thomas sought help for his daughter five years ago, there were three public beds for people with eating disorders at St Vincent's. Today, that number remains the same and there are an estimated 200,000 people suffering with an eating disorder in Ireland. But the HSE has big plans.
The facility at St Vincent's is to be expanded to six beds this year with funding of Euro750,000 allocated. And over the next 10 years, under the government's adapted mental-health policy, A Vision for Change, three more specialist eating-disorder teams around the country are to be developed. In 10 years time, there will be 24 eating disorder beds nationally, according to the HSE.
But how many people like Terri Fortune - who died six weeks ago in a UK hospital from anorexia after trying in vain to get help in Ireland for over a decade - will suffer or die during those 10 years?
Terri's mother, Catherine Fortune, remembers an outgoing girl who loved hurling and singing.
younger and younger too, she continues, with parents of children as young as seven calling her helpline for advice.
'Abysmal' service Lily Glowatzki has now fully recovered. "It is a complete and utter myth that people can never recover from an eating disorder. And a dangerous one. Of course recovery is possible, given the right treatment. Saying otherwise is very destructive, " her father says Lily's treatment in Germany and Ireland was hugely expensive. Upon his return from Germany, Thomas looked into European law and discovered that if a country is unable to provide care for its citizens, it must reimburse or fund the expenses that have been incurred in another jurisdiction. Thomas got a solicitor and a barrister to fight his corner on this point of law but the HSE agreed and reimbursed the Glowatzki's before it went to court. In Ireland, it was costing considerable sums to pay for Lily's treatment at the Marino centre and again Thomas approached the HSE, who agreed to partially funded Lily's costs.
"I told them, 'My daughter is dying. She has a right to live and you have to help.' I wrote them emotional and personal letters until they listened. They eventually helped. But unless you badger them, you will not get anything. They don't come and tell to you what you're entitled to. You have to fight."
No one told Terri Fortune's family that you could approach the HSE seeking funding to pay for necessary treatment. As far as her mother Catherine knew, the private option was all that was available so her daughter instead went in search of public treatment in the UK.
Catherine Fortune spoke to the Sunday Tribune out of love for her daughter and with a sense of hope that by discussing the circumstances of her tragic death others in desperate need of help will be able to find it.
Dr John Griffin, clinical director of the eatingdisorder programme as St Patrick's hospital, says his 16-bed facility is always full and there is always a waiting list, although it has been reduced to a number of weeks from a number of months since he expanded the unit in January 2006.
"In my opinion, yes, the services in the country are inadequate. The people on the waiting list to get a bed here are urgent cases and need to be admitted immediately."
Prof Patricia Casey, professor of psychiatry at the Mater Hospital and University College Dublin (UCD), described state services to people with eating disorders as "abysmal".
"It doesn't surprise me when I hear of people having to leave the country to get help. We're providing a third-world service in a first-world country."
Helping others Thomas knows first-hand about the barriers to people trying to get help for an eating disorder and now he's actively involved with trying to improve things. He's in talks with the HSE about setting up a multidisciplinary service in Cork for people with eating disorders and has set up a support group in Cork and a website - www. edcontact. ie - for families of people affected.
Parents travel from as far as Co Clare to attend his monthly meetings. "Lily's story has a happy ending but we know we are one of the lucky ones. That's why we want to help others."
Lily, who is currently studying for her Leaving Cert, plans to become a counsellor to help people going through an experience similar to hers.
And Thomas is currently studying for a diploma in order to counsel people with eating disorders.
"It's not enough to just give out about what is not provided by the HSE. We all have to try and do something to help the thousands of our country's children who are suffering. I'm so glad Lily's story has happy ending. There can be many more."
� Despite repeated representations, St Vincent's hospital was unavailable to comment on the length of the waiting list for admission to one of its three eating disorders beds. St John of God hospital was also unavailable for comment.
|