DYING FOR GOVERNMENT ATTENTION

One Nurse and Three Beds

According to Katrín Sif Sigurgeirsdóttir, the chairperson of Spegillinn (The Mirror), an interest group for families and relatives of eating disorder (ED) patients, the current situation is simply terrible. “There are no solutions for people with eating disorders. The psychiatric ward at Landspítalinn University Hospital does not specialize in treatment for these patients. There were a couple of nurses who took it upon themselves to cater to ED patients, sometimes in their own time. There were cases when they worked during their lunchtimes to provide care for anorexics and bulimics. Still, it was nowhere near enough.”

Now, even that has come to an end. On the 25th of January last year, the ED team at the psychiatric ward issued a statement saying that they would no longer accept new admissions of ED patients. The reason behind it was simply overflow of cases, combined with lack of staff and funding. New patients were referred to the outpatient clinic of Landspítalinn instead, where currently one psychiatric nurse caters to all eating disorder patients. The nurse said in an earlier interview that she received five new cases per week. That makes roughly 300 people per year who seek help, not counting the cases where patients seek private counselling. However, a vast majority of ED patients suffer in silence, whereas only one in ten people receives treatment for their illness. The Icelandic public health care system has three hospital beds specifically for adults with eating disorders, and they’re constantly filled.

An Explosion of New Cases
The cessation of treatment by the eating disorder team at the psychiatric ward could not have come at a worse time. In the year 2003, 70 eating disorder patients were referred to the ward, a 37% increase from the year 2001. To put things in perspective, 110 patients were diagnosed with an ED in Iceland between the years 1983 and 2001 (The Icelandic Medical Journal), meaning that the referrals in 2003 alone were as many as in the 11 years prior to that. More disturbingly, the number of child referrals doubled between the years 2003 and 2004, going from 10-15 to 30. Two thirds of those who suffer from eating disorders in Iceland are under the age of 25. However, people do not grow out of these disorders simply because they grow up.

On the 18th of March of this year, the Minister of Health, Jón Kristjánsson, was portrayed on the front page of Fréttablaðið newspaper, saying a special clinic for eating disorders had been opened.
“Our phone was ringing off the hook for days afterwards,” Sigurgeirsdóttir told us about the day. “I was extremely happy to hear that our struggle had finally led to something positive, but, at the same time, I was a bit taken aback that nobody had notified us about such radical changes. I called everywhere to get more information about this new clinic, including the Department of Health, but nobody could give me any concrete answers. Apparently, this clinic doesn’t exist. It was all an illusion.”

According to a staff member of Landspítalinn who wishes to remain anonymous, what happened was this: “They renovated a space at the psychiatric ward, in order to become a clinic for eating disorder patients. The space was inducted, but that was all. To this day, it’s still empty and not in use. There is no way of predicting when or if it will start serving its function.” When contacted about the matter, the Department of Health could not offer any comments for the time being.

Those Who Fight for the Cause

Forma, a support group for people with eating disorders, was founded a few months ago by two women who have battled anorexia and bulimia in the past. Alma Geirdal, one of the founding members, says that the estimated 3000 Icelanders who suffer from eating disorders is an outdated statistic in her opinion.

“It’s closer to 10,000; I would assume,” she says. “I think the numbers have doubled between years since the last research was conducted.”

Alma says that the need for an inpatient clinic is tremendous.

“When we started our work at Forma, we were going to focus on people aged 18 to 26. In light of how great the need is, we tossed our restrictions and we’re currently working with people aged 13 to 50. Many of them are in need of around the clock care.”

Like the staff of Spegillinn, the women behind Forma are not getting paid for their work, and neither organization charges for their assistance. Youth centre Hitt Húsið has let Forma convene in their locales, but apart from that, they’re still looking for appropriate housing to tend to their ever-growing group of eating disorder sufferers.

Interest and support group Spegillinn was founded in 2002 by families and relatives of ED patients. They have been lobbying the healthcare system for three years, pressing for change.

“It’s a constant struggle. For every two steps forward, we take one and a half backwards,” says Sigurgeirsdóttir. “We’ve had a representative from Spegillinn on a committee that was put together almost three years ago by the Department of Health.”

Other representatives were recruited from the Directorate of Health, the Landspítalinn University Hospital psychiatric ward, and the Department of Child and Adolescent Psychiatry. The committee’s aim is to find ways to develop a clinic for people with eating disorders, but to this day, nothing has come of it. “We’ve attended every single meeting and put forth our ideas, and in between meetings, we’ve called and pressed for answers regarding the process. The fact that nothing is happening is very discouraging.”

Prisma, an interdisciplinary clinic for people with ED, opened in Reykjavík on the 1st of November last year. It was founded by three women, an occupational therapist, an art therapist and psychiatric nurse Margrét Gísladóttir, who is also in the administration of Spegillinn, as well as an employee of Landspítalinn. Since Prisma is not funded by the government, patients pay full value for their treatment, perhaps not an option everyone can afford. However, the price for a personal interview at Prisma is lower than the standard price for psychologists with private practices in Iceland, or 5000 ISK compared to 7000 ISK.

Public assistance, though, is limited. According to Alma Geirdal of Forma, “The head of the psychiatric ward at Landspítalinn doesn’t think eating disorders are a problem in Iceland.”

To this day, healthcare authorities claim nobody has died from an eating disorder in Iceland. However, Sigurgeirsdóttir lost her sister-in-law to anorexia, as she’d been battling the disease for years and eventually committed suicide.
“Deaths from eating disorders are always labelled as suicide, heart attack or asphyxiation due to a foreign object being stuck in a person’s throat,” says Alma Geirdal. Bulimia patients, for example, are vulnerable to heart attacks because they exhaust their body’s supply of calcium. They are also at risk of choking on pieces of food while forcing themselves to throw up.

In order to be admitted to one of the three hospital beds the Icelandic healthcare system has to offer eating disorder patients, the person has to have reached a certain minimum BMI (body mass index) based on their weight.
“It is utterly strange,” says Geirdal, who knows the process from personal experience. “First of all, a person’s weight does not indicate how sick they are. Second, imagine what it does to a person who’s striving to be thin, to be told that they’re not thin enough to deserve help. It fuels the disease.”

At the Spegillinn website, parents and relatives of eating disorder patients share their frustrations. One woman brought her acutely ill and delusional daughter to the ward, but was sent home because her daughter still had weight to lose before she’d even be considered for admission.

“Do parents need to sit by and watch their children die because the healthcare system doesn’t offer any resources for eating disorders?” a worried relative asks.

It’s a question worth posing, since the current framework basically requires ED patients to be on their deathbeds in order to be admitted. In some cases, it’s too late, since physical complications such as osteoporosis and fertility problems are often irreversible.

The Complexity of the Disorder
In addition to being among the deadliest of psychological disorders, eating disorders are also extremely difficult to cure. According to Geirdal, it is incredibly hard to be a recovering ED patient in today’s society.

“It is almost easier to be a recovering alcoholic, since it’s illegal to advertise alcohol in Iceland. Our addiction is in our face all the time. We’re constantly bombarded by dieting tips and distorted body images in the media.”

To complicate matters even further, a person with an eating disorder often suffers from one or more personality disorders aside from the ED, which may have been present in the patient beforehand, but may also be a product of it. A research conducted in an inpatient clinic in Norway proved that 75% of the patients had one or more personality disorders, including avoidant personality disorder (51%) and borderline personality disorder (21%). This makes it even more apparent that ED patients need tailored treatment and special care.

No Funding

Eating disorders receive absolutely no government funding aimed at finding specific solutions and treatment. A group of students graduating from Reykjavík University created a model for a hypothetical Icelandic eating disorder clinic, complete with an exact budget of how much building and operating it would cost in real terms.

The students who created the model developed it fully so it could be put to use in reality. Now that the groundwork has been laid and the numbers have been calculated, all that’s left is a government initiative.

Hjördís Hjartardóttir, one of the students who created the model, attended a meeting with the Minister of Health. “He was less than enthusiastic about our ideas,” Hjördís says. “We got the impression that there was a decided lack of interest from the head of state.”

A Plan Worth Tying Hopes To?

On the 25th of October last year, the Health and Insurance Committee of the Icelandic parliament proposed a plan to improve public health by encouraging healthier diets and more exercise. The plan included putting together a professional team to analyze problems related to unhealthy diets, obesity, lack of exercise and eating disorders.

After diagnosing the causes and consequences, the team is to propose a united operation and plan of implementation to the government in April 2006. However, Sigurgeirsdóttir doesn’t tie her hopes to the work of the team.

“Nobody from this team has been in any contact with us at Spegillinn. Since we have members working in the psychiatric ward too, we would know if anybody in there was contacted in relation to this plan. So far, there has been no communication with us. Why should we raise our hopes if this committee doesn’t even talk to the people who know what’s going on in these matters?”

When asked what they’d do if they had ultimate power, both Geirdal and Sigurgeirsdóttir responded in the same way: “I’d open a clinic for people with eating disorders,” they say.

“We’re working with so many ill people, helping them to hang in there, but that’s about all we are in the position to do,” says Sigurgeirsdóttir. “We at Forma are preparing a symposium about eating disorders on September 17th,” she adds.

“It’s a huge project, and it’ll be held in Loftkastalinn theater. We’re hoping that by doing this, we’ll raise the authorities’ attention to the problem at hand. We encourage everybody to attend, not just people within the healthcare system.”

Forma is still looking for sponsors for the symposium. Although the government seems to lack interest and initiative to act on the problem, there’s still hope for people with eating disorders in Iceland. By refusing to give up, the hard-working individuals at Forma, Spegillinn and Prisma make sure the fight goes on.

For more information in Icelandic,
visit www.spegillinn.is.