THE FAMILY OF a teenager who died after waiting for treatment in a hospital for 12 hours has criticised the HSE for not consulting them on the parameters of the inquiry into her death.

Aoife Johnston, 16, died on 19 December 2022 after waiting 12 hours in University Hospital Limerick’s emergency department for treatment for sepsis.

Her family has said that her condition deteriorated to such a degree during that time that other patients began advocating for her to be seen.

A solicitor for the family Damien Tansey said that they are “haunted” by their memories of being in hospital waiting for Aoife to receive treatment.

“You cannot imagine the difficulties they are confronted on a daily basis, and it was particularly acute and difficult for them just coming up to Christmas,” Tansey said. 

“They were in the hospital for the entire of the 12 hours when they were pleading with the medical staff to assist their daughter, other patients in the casualty department that night were advocating as well for Aoife,” he said.

“They saw that she was in serious danger and they too pleaded with the medical staff to attend to Aoife,” he added. 

“They are living with that experience on a daily basis and it’s haunting them.”

The HSE has announced that an independent inquiry would be carried out into Johnston’s death, led by retired chief justice Frank Clarke.

On Tuesday, the HSE published its terms of reference for the investigation.

HSE chief executive Bernard Gloster said the judge-led inquiry would provide “an evidence-based report” on the circumstances surrounding Johnston’s death as well as the clinical and corporate governance of University Hospital Limerick.

A systems analysis review (SAR) report found that overcrowding in UHL’s emergency department is “endemic”, and that doctor and nurse staffing levels are “insufficient”.

Tansey said that the family were informed of the terms of reference the evening before they were published, and “without any consultation with the family, without any warning that they were about to be published”.

“There was absolutely no discussion or consultation with us, the legal representatives, or the Johnson family with a view to the makeup of those terms of reference,” he told RTÉ’s Morning Ireland.

“Basic courtesy dictates, for example, that the family first should have been told in advance that the terms of reference were about to be published, and it was entirely inappropriate that they should learn about this effectively from the media.

“The media announced the fact that the terms of reference had already been determined before, by email, we got the terms of reference.

“Clearly, after due consideration and consultation with the family, we expect that we will seek to add to, or perhaps alter, some of the terms of reference.”

Tansey said that the report from the review committee was delivered to the family a day before the anniversary of Aoife Johnston’s death.

He also said that there appeared to be at least one interim report that the family had not received.

“The main issue they are now concerned about is the fact that they learned everything from the media… that’s not appropriate given the nature of this tragedy. It’s an unspeakable tragedy,” Tansey said. 

“The Johnson family, for example, got the report produced by the review committee a day before the anniversary of this tragedy, and they were dealing with that, and were challenged in the manner in which they were dealing with that and they then get the report.”

The HSE said in a statement that it is “very conscious of the significant upset and distress for Aoife’s family”.

“The CEO has previously communicated an open-ended invitation to meet with them about any and all issues associated with Aoife’s care and the systems analysis report which was provided to them in December.

“This invitation remains.”

Tansey said that the Johnston family and their legal representatives are “ready, willing and able” to attend a meeting with the HSE, and said “we will attend as soon as a concrete invitation emerges”.