People with eating disorders forced to travel to UK for treatment, says judge

Inadequate services for people with eating disorders is causing "unnecessary distress" and forcing some patients to go to the UK for treatment, the former president of the High Court has warned.

Mr Justice Peter Kelly, who heard increasing numbers of wardship applications concerning people with severe eating disorders during his five-year tenure, is calling for reform of the 2001 Mental Health Act and increased specialist eating disorder services.

Having retired last year, he says about 30 per cent of wardship applications for younger people, between 2015 and 2020, concerned young women with anorexia. The applications, made by the HSE, arise when the patients require naso-gastric feeding – which requires restraining them – or to be taken to the UK for treatment in specialised units.

According to the courts service, there are six women and one girl in wardship due to severe anorexia nervosa. These include two women being treated in Britain, though The Irish Times knows of further young women being treated in Britain who were not made wards as they had capacity to consent to travel.

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There are currently just three eating disorder beds for adults in the HSE system, and four in-patient mental health units for under-18s.

Those with private health insurance can access eating disorder beds in St Patrick's and St John of God's psychiatric hospitals in Dublin, Lois Bridges Eating Disorders Treatment Centre and the National Eating Disorder Recovery Centre in Dublin. Other private facilities operate outside Dublin.

A 2018 HSE National Model of Care for Eating Disorders aims to provide eight adult and eight child and adolescent community treatment teams, though just three have been established – two for children and one for adults.

Wardship

Mr Justice Kelly is supporting Cared (Caring about Recovery from Eating Disorders) Ireland, a support group for parents, and attended a meeting between them and Minister of State for Mental Health Mary Butler in recent weeks.

Cared Ireland’s 180 members, also calling for reform of the 2001 act, say: “A person suffering from an eating disorder should not have to be made a ward of the High Court in order for involuntary refeeding to be administered.”

In other common-law jurisdictions, including the UK, Australia and New Zealand, patients did not need to be made wards for naso-gastric feeding, said Mr Justice Kelly.

Securing wardship can take weeks, says Cared, which is “too long... the health and wellbeing of the patient rapidly deteriorates in that time.”

In his submission to a Department of Health review of the Act, Mr Justice Kelly calls for "crystal clarity that involuntary feeding is part of the normal treatment of this disease and may be administered in appropriate cases without resort to court".

“This would avoid additional trauma being suffered by all concerned, to say nothing of the costs that would be saved. It would also accord with the position which obtains in many common-law jurisdictions.”

He continues: "Sadly, there will remain a cohort of anorexia sufferers who will have to resort to wardship, who, because of the lack of appropriate specialist facilities in this country, have to be sent for treatment abroad, usually to England. They require orders from both the Irish High Court and its English counterpart in order to avail themselves of treatment there."

He told The Irish Times he could understand if anorexia was a “rare, one-in-a-million illness... but this is not uncommon.”

“The real problem is resources. We don’t have psychiatric units capable of administering naso-gastric feeds as required. We have to have proper eating disorder facilities with proper personnel, fully trained. It is a specialist area. The nursing staff and support staff all need to be fully trained in eating disorders.

“We are fortunate that the National Health Service [NHS] in the UK has been so generous in sharing its specialist facilities with us, but we really ought to provide them here for our people.”

Cared Ireland is also calling for the parents or carers of adult patients with severe eating disorders to be involved as advocates in their treatment.

The Department of Health did not provide a comment.

Case study: Jane and her mother

Jane* (19) began restricting food two years ago. For the past month she has been in a specialist eating disorder unit in the UK, being treated for severe anorexia.

Though angry her daughter could not get the treatment she needs at home, her mother is thankful that the British NHS is available to care for her.

Jane spent over a year in psychiatric and general hospitals, and availed of supports in the community, but none was able to support her to overcome the anorexia.

Diagnosed over a year ago, she had been seeing her GP weekly – for which her parents paid – and a HSE psychiatrist in the community. Her parents also paid privately for a dietician, while a psychologist with eating disorder expertise was “contracted in” to support her.

“The eating disorder got worse,” says her mother. “Jane’s body mass index got so low, to the point where the GP rang us after seeing her and said, ‘You need to get her into A&E immediately.’”

The local hospital, she says, admitted her and tried to get her transferred to a tertiary hospital in the hope of accessing an eating disorder service.

“They said they didn’t have the supports she needed. We contacted politicians but none of the tertiary hospitals could take her. So the local hospital started to do the refeeding. They did all they could but they had no understanding of eating disorders.”

After being tube-fed for several weeks, Jane discharged herself. "The staff there were kind but they did not understand what she was going through." A local Government TD made representations to get Jane one of the three adult eating-disorder beds in the country, in St Vincent's University Hospital Dublin, but she was not in the catchment area.

“Her psychiatrist at this stage started applying to hospitals in the UK. He said there just weren’t the resources in Ireland, publicly or privately, to support the eating disorder where it was at.” Her treatment in the UK is being funded by the HSE.

She did not have to be made a ward of court as she retained capacity to consent to travel. On arrival at the hospital, however, she was sectioned under Section 3 of the Mental Health Act 1983, allowing the hospital to hold her for her own safety.

“The big difference between the service she was getting here and what she is getting now is that she is in a specialist unit where all the staff are trained in eating disorders. They know how to support her, how to talk to her, how to help her overcome the anorexic voice that had completely taken over.

“She has a therapist allocated to her. Specialist nursing staff are in and out talking to her. Here there just wasn’t the mix of medical and specialist eating disorder psychological supports she needs.”

*Name has been changed

Cared Ireland can be reached at caredireland@gmail.com

Bodywhys can be contacted at 01-2107906 or alex@bodywhys.ie