People suffering with eating disorders in Ireland often cannot access proper treatment in the public system, leaving them feeling isolated and abandoned, a support group has warned.

Caring about Recovery from Eating Disorders (CARED) Ireland is a voluntary group made up of parents and carers of people with eating disorders. It recently carried out a survey, which revealed some startling results.

According to the findings, 80% of people caring for loved ones with eating disorders believe that public healthcare clinicians lack the appropriate knowledge and training to treat them.

Furthermore, 69% were not satisfied with the overall service provided for patients with eating disorders through the public health system.

"Research shows that most people can and do recover from eating disorders if they get effective, evidence-based treatment from eating disorder-trained staff. Yet those suffering continue to be met with a lack of specialist clinicians equipped to understand and deal with eating disorders," commented Susan Brennan of CARED Ireland.

The organisation also expressed major concern about the impact of the pandemic on their loved ones. According to the survey, 52% of carers said that COVID-19 had increased the severity of their loved one's disorder.

"Early intervention is crucial to recovery, yet waiting lists are growing and the incidence of relapse worsens every week. The longer a sufferer is left without specialist help the more entrenched the eating disorder can become.

"Too many sufferers express feeling misunderstood, abandoned and lost, while begging to be heard and taken seriously so that they can recover and live normal lives," Ms Brennan said.

The organisation pointed out that the National Clinical Programme for Eating Disorders, which was published by the HSE in 2018, committed to putting in place 16 specialist hubs nationwide over five years. These would offer specialist multidisciplinary teams of clinicians. However, it has failed to meet this commitment, issuing a statement last month to confirm that these hubs will be delayed by almost four years, with completion now expected by 2025.

Meanwhile, earlier this year, it was revealed that just 3% of the money allocated by the HSE to improve supports and treatment for eating disorders was actually spent on this since 2018. No money was spent in this areas last year.

"As the HSE kicks the can down the road once again, thousands of families across Ireland continue to suffer under the huge strain and distress of managing this life-threatening condition, to be met with wholly inadequate treatment and support.

"In response to the delayed rollout of these specialist hubs, the HSE said it ‘hopes' to add two to three teams each year over the next five years. We don't need another ‘wait-and-hope' strategy. We need a concrete plan," Ms Brennan insisted.

She questioned where the sense of urgency is for an illness that continues to have the highest rate of mortality among all mental health disorders.

CARED Ireland also highlighted the financial burden that this illness can bring. According to the survey results, 42% of people have ended up paying for treatment themselves.

Some 40% have paid at least €10,000 from personal funds, including 13% who have paid between €20,000 and €50,000, while another 4% have spent over €50,000.

The survey noted that 27% had to bear the costs of day-patient programmes, while 19% had to personally fund expensive residential inpatient treatment, which they could not access through the public health system.

The main cost incurred was for counselling and psychotherapy, with 85% saying they paid from their own resources. This was followed by dietitians/nutritionists (63%), psychologists (38%), psychiatrists (29%) and family therapy (25%).

A total of 41% used private health insurance to pay for some treatment, however CARED Ireland pointed out that most plans provide a maximum of 100 days of inpatient cover, often discharging patients too early to ensure proper recovery, putting them at risk of a relapse.

Currently, there are a total of three specialist beds available in the public system to treat eating disorders for adults. These are located in St Vincent's Hospital in Dublin, and they are only available to people living in the Dublin south east, Dublin south and Wicklow areas.

"It is time for the State to finally step up to this serious issue and fulfil the duty of care it is morally bound to provide," Ms Brennan said.

CARED Ireland can be contacted on Facebook here or by email at CAREDIreland@gmail.com

The survey of 100 respondents was conduced online between February 17-23, 2021.