ACT’s anorexia nervosa services don’t measure up
By AMY BIRCHALL
CANBERRANS with anorexia nervosa must navigate an underfunded, inadequate health system that appears to flout its own guidelines on patient care and offers few opportunities for family-based therapy.
FOR my 14th birthday I had a naso-gastric tube inserted down the back of my throat and an eight-week stint in the Adolescent ward at The Canberra Hospital.
I had lost a quarter of my body weight in four weeks, was counting the calories in Diet Coke and had a non-resting heart rate of around 35 beats per minute. I had been diagnosed with anorexia nervosa just months earlier.
During my stay in hospital I was stabilised medically and physically, but the psychological aspects of my treatment were not addressed.
The ACT’s eating disorder services were so limited that I had to travel to Melbourne to access appropriate, adequate, family-inclusive treatment. Thanks to More than a year of intensive therapy and education that my family and I received whilst interstate, I have since recovered.
But many people diagnosed with anorexia nervosa in the Canberra region will not be as fortunate, especially if they are unable to access treatment outside of the ACT.
Few positive changes have been made to local eating disorder services since my diagnosis in 2005, despite a review of eating disorder services in 2009.
The Review of Services for People with an Eating Disorder across the Australian Capital Territory was conducted by eating disorder expert Janice Russell for ACT Health in 2009.
The review found that eating disorder services had contracted since the previous review in 2004, and recommended that more inpatient facilities should be made available for people aged over 16 with eating disorders.
Currently, younger patients with anorexia nervosa are admitted to the adolescent ward at The Canberra Hospital. Adult patients are usually admitted to Calvary Hospital’s psychiatric unit or the private Hyson Green mental health facility, which is also at Calvary Hospital, according to the president of the Eating Disorders Foundation of the ACT (EDFACT), Leni Cleaves.
There are no designated eating disorder wards in Canberra hospitals. Existing facilities are in high demand, which means people with anorexia nervosa must wait for beds to become available before being admitted.
The system is so strained that one woman with anorexia nervosa recalls being discharged from Calvary Hospital even though she still relied on tube feeds for every meal.
“As soon as I reached a minimum weight, which was still seriously low, I was discharged . . . ,” she said. “I was still getting all my calories from regular tube feeds. . . . It was about getting my weight up and sending me on my way.”
In ACT Health’s response to the review’s recommendations that more inpatient facilities were needed, it said that it was appropriate for Canberrans to access treatment interstate.
But financial, family, work or school commitments pose difficulties.
Jessica* was diagnosed with anorexia nervosa several years ago. She is due to be admitted to a specialist Sydney clinic for a fifth time in early May. She said that if appropriate eating disorder services existed in Canberra, she would choose to be treated locally.
“Canberra has no good eating disorder programs at all, so I have to go to Sydney,” she said. “It sucks because it’s so far away and I miss my family and boyfriend too much, but it works.”
A new 20-bed adolescent and young adult mental health inpatient unit is due to open at The Canberra Hospital in 2012 and will cater for young people aged between 13 and 25, including those with anorexia nervosa.
A spokesperson for the project has said that “clients with eating disorders will need to be medically stable before being admitted”.
People with anorexia nervosa usually only require inpatient hospital care when they are not medically stable, so it is unclear how the unit will treat medically stable patients in an inpatient setting.
Guidelines for the unit’s treatment of clients with anorexia nervosa were still being developed, the spokesperson said.
At The Canberra Hospital, there is a marked difference between the hospital spokesperson’s description of how adolescent patients with anorexia nervosa are treated, and how nurses and former patients have described treatment methods.
The Adolescent ward at The Canberra Hospital follows the Royal Australian and New Zealand College of Psychiatrists (RANZCP) guidelines for the treatment of anorexia nervosa, according to a Canberra Hospital spokesperson.
The consumer and carer edition of the RANZCP guidelines specify that “families do not ‘cause’ anorexia nervosa – but they are an important part of the recovery process”. Similarly, the clinical practice edition of the guidelines makes no mention of excluding parents from treatment or blaming them for their child’s eating disorder.
However, nurses have told visitors to the ward that parents of patients with anorexia nervosa are discouraged from visiting. There is also an attitude among staff in the ward that parents are responsible for their child’s illness, nurses have said.
One nurse recently told a member of the public that “parents are part of the cause [of anorexia nervosa]. We need to keep them away. Even nice, doting parents can make the problem worse”.
A spokesperson for The Canberra Hospital denied these claims.
“We actively involve parents in treatment…,” he said. “We believe parents are the best resource the young person has and we consider them part of the treatment team.”
When I was in hospital, the adolescent psychiatric team made it clear that my family would not be involved in my treatment. My parents were forbidden from visiting outside their allocated one hour a day of visiting time. Other parents of children with anorexia nervosa have had security called to remove them from the ward.
Staff openly blamed my parents for my illness. They were excluded from treatment decisions and prevented from being involved with my care.
The Canberra Hospital spokesperson confirmed that visiting restrictions are still used today.
“Once medically stable the young person can utilise day leave to maintain social connections with friends and family,” the spokesperson said.
This is despite recent research conducted by the National Eating Disorders Collaboration which suggests that family-based therapy is a highly successful method of treating eating disorders, particularly in patients who are ill for the first time.
Ms Cleaves said that it was “extreme” that sick children must wait until they are medically stable to be able to see their families.
“It’s understandable that patients have to be medically stable before they can spend a night at home, but not being able to maintain social connections with their family [until they are medically stable] is…ridiculous,” she said.
Parents of other seriously ill children are actively encouraged to stay with their child at all times, participate in their care, and be involved in treatment decisions.
However, nurses have said that parents of patients with anorexia nervosa are not included in the treatment team.
“Parents can’t be a part of that team,” one nurse said. “Obviously when we’re discussing what problems the parents are causing they can’t be there to discuss that.”
Another nurse told a member of the public, “It’s different with other seriously ill patients. Their parents can be overbearing, but we allow that because their child might be dying.”
Anorexia nervosa has the highest mortality rate of any mental illness. Twenty percent of people diagnosed with anorexia nervosa will die from the disease, according to figures from EDFACT.
The Canberra Hospital spokesperson was asked why his earlier comments about parental involvement and patient guidelines were different to what nurses have told members of the public. At the time of submission (9pm 28 April), NowUC had not yet received a response.
Day patient and outpatient eating disorder services in the ACT are also far from satisfactory. The 2009 review also recommended that “more and improved” day patient and outpatient services were needed in the ACT.
ACT Health responded with claims that sufficient day patient and outpatient services already exist in Canberra.
The only day patient and outpatient service in Canberra is the Eating Disorders Program (EDP), which operates under ACT Health.
Part of its service includes running day programs for people with anorexia nervosa. The program promotes weight restoration and provides group therapy, as well as meal therapy for younger participants.
Jessica attended the day program during a previous relapse. She said that the program did not address the causes of her illness and that it was not intensive enough to help her make a full recovery.
“[EDP] is not very good… ,” she said. “It’s a small amount of support, but it doesn’t really help to fix what’s going on.”
EDP was contacted to find out how many patients its anorexia day program accommodates, and whether family-based therapy was included as part of the program, but NowUC did not receive a response prior to deadline.
In 2005 there were only a handful of places available, and the program had an extensive waiting list. Former participants in the program have said that the average time spent in the program is 12 weeks, and that little family-based therapy was offered.
EDP’s anorexia nervosa day program has also had its hours significantly reduced in recent years, according to Ms Cleaves.
She said that there while there are some benefits to spending fewer hours in therapy, spending more time in the program would be beneficial in the long term.
“[Fewer hours in therapy] mean that patients can still go to work and school, which is a bit more normalising for them. I think that’s really positive.
“But on the other hand… I see it as being less intensive. I’m not sure if there is much benefit in focussing on someone’s education if they end up dead”.
Since the 2009 review of eating disorder services in the ACT, EDP has made efforts to cater to the specific needs of older and younger patients with anorexia nervosa. Previously, people of all ages and at different stages of the disease were grouped together in a single program.
There is now one program for younger patients who are ill for the first time, and a second program for older people with chronic anorexia nervosa, Ms Cleaves said.
Ms Cleaves said that in some cases the groups can be too specific.
“Where are people who don’t fit those two categories supposed to go? What about say, older patients who are sick for the first time?” she said.
Ms Cleaves acknowledged that whilst EDP services were not ideal, this was because of a lack of funding rather than a lack of understanding by staff.
“The staff are underfunded, underpaid and being forced to work within a tight budget that isn’t service-oriented,” Ms Cleaves said. “They have a very difficult job.”
The ACT’s only eating disorder support group, EDFACT, also struggles financially.
In response to recommendations made in the review of eating disorder services, ACT Health said that it would consider providing financial assistance to EDFACT “as part of the implementation of the 2009 Mental Health Services Plan”.
EDFACT is not mentioned in the Mental Health Services Plan and has not yet received any government funding.
Ms Cleaves said, “There was talk about offering funding, but that hasn’t been forthcoming. They haven’t given us a reason.
“We don’t get any financial assistance at all. We’re volunteer run”.
Ms Cleaves has been running EDFACT from home at her own expense for the last two years.
Without government funding, EDFACT is limited to providing referrals to EDP.
The foundation relies on partnerships with other mental health organisations such as the ACT Mental Health Consumer Network to run support networks and other activities.
While there have been some improvements to services since the 2009 Review of Services for People with an Eating Disorder across the ACT, Canberra’s eating disorder services are still limited, overstretched and underfunded. In many cases, these services are unable to provide comprehensive psychological care.
Family-based treatment is a recognised and successful approach to treating anorexia nervosa, but The Canberra Hospital and EDP do not appear to have embraced it.
This has forced many Canberrans to seek more extensive and holistic treatment outside of the ACT, at a significant financial and personal cost.
My own recovery was possible because my family and I were able to travel interstate to access the intensive treatment that I needed.
I consider myself lucky – many people diagnosed with anorexia nervosa never make a full recovery, and one in five of those will have their lives cut short by their illness.
*Not her real name