An inquest jury in Cork has recommended that a national policy should be put in place to oversee the administration of unlicensed medicines in Ireland.
The proposal was made at the inquest into the death of 13-year old Ava Barry, whose mother campaigned to be permitted to use medicinal cannabis to treat her daughters seizures.
Ava had a rare form of epilepsy called Dravet Syndrome, which caused her to have regular seizures.
Her mother, Vera Twomey, fought a lengthy campaign for access for Ava to medicinal cannabis. She walked from Cork to Leinster House twice as part of the campaign.
In 2017, the then minister for health Simon Harris consented to the use of medicinal cannabis in Ava's care.
The drugs, which were not licensed for use in this country, were credited with reducing Ava's seizures by up to three quarters and her quality of life improved.
But Dravet Syndrome is a progressive condition and Ava's health gradually deteriorated.
Ava was 13 years old when she died at Cork University Hospital on 27 May last year.
The inquest into her death heard this afternoon that difficulties arose at the hospital in relation to the administration of medicinal cannabis to Ava, because it was not licensed.
Consultant Paediatric Neurologist Olivia O'Mahony told the inquest the situation needed to be addressed not only at the hospital, but nationally too.
This evening, the inquest jury recommended that a national policy should be developed to create greater supervision over the administration of medicines which are not licensed for use in this country
Their recommendation was welcomed by Ms Twomey.
"Ava was funny. She was kind. She ruled the house," Ms Twomey told RTÉ News. "I'm very, very happy that the jury have come to the decision to put in place a protocol into the future - Ava's protocol."
The jury asked that the protocol be called Ava's Policy. Vera Twomey says she hopes it will save other families from suffering.
Earlier, in her statement to the inquest, Ms Twomey described her daughter as spectacular, funny and fabulous.
She said Ava was utterly inspirational, with a tenacity to always fight back.
"Her enthusiasm for life bubbled over and when she was well, she made the very most of every opportunity to be involved in everything," Ms Twomey said. "Yes, the seizures butted in, but she never gave up and that became the family mantra: never give up; Ava never gives up, so we won't either."
Ms Twomey said she and her family miss Ava, but Ava would always be with them too.
She said Ava lit up a room, wherever she was: "Her smile took up her whole face and she infected everyone she encountered with joy. She was, then and now, the most precious of gifts and an angel on earth, as much as she is an angel now away from our sight."
