Daily Mirror (Northern Ireland)
FAMILY TO SUE HOSPITAL FOR MEDICAL NOTES
Top legal team in challenge to get records for US treatment
THE Royal Victoria Hospital must release the medical records of a seriously ill toddler today or face legal action, the Daily Mirror can reveal.
The parents of 17-month-old Jorja Emerson, from Bangor, Co Down, now have a leading law team behind them in their bid to get her treated in the US.
Dad Robbie said if the delay for notes continues every seizure “could be her last”.
THE Royal Victoria Hospital has been threatened with legal action unless it releases the medical records of a desperately sick baby.
Little Jorja Emerson is waiting to travel to Miami to be assessed for a treatment for severe epilepsy.
But without the medical records, staff at the Brain Institute at Miami’s Nicklaus Children’s Hospital cannot advise the 17-month-old as a patient.
Jorja’s father Robbie said he has been told the Belfast Trust does not have the time or resources to search and transfer his daughter’s file to either her family or their solicitor.
He added six previous requests had been made for the records.
Robbie said: “I have Miami Children’s Hospital phoning me asking for Jorja’s notes as a matter of urgency and I have the RVH saying they haven’t time to get the notes. In the meantime I’m watching my daughter lying in the Ulster Hospital, who are willing and able to hand over her notes.
“And every seizure that Jorja has could be her last. I’d like to know what is being prioritised in the RVH over the life and possible death of my little girl.”
Now human rights specialist Kevin Winters and his legal team have blasted the RVH with a clear warning.
In a letter sent on Monday to the Trust, solicitor Marie Hans said: “It is our instructions that your hospital is refusing to release these medical records as you advise you do not have the time or resources available to do so.
“We find this incomprehensible given the life of this child is at risk.
“These notes are of the utmost urgency as Jorja’s parents are presently exploring alternative care options outside of this jurisdiction.
“In order for her care to be assessed, her records are required immediately. Her doctors will be aware Jorja’s health is at a critical stage and intervention is
essential to ensure her wellbeing. She is hospitalised at the Ulster Hospital and is suffering from a number of seizures on a daily basis.
“Each seizure places her young life in significant jeopardy.”
Robbie and Jorja’s mum Carly, both 30, from Bangor, Co Down, are hoping their daughter will stabilise enough to allow her to be transferred to the US for treatment. Restaurateur Robbie added: “We don’t want Jorja taken to the Royal Victoria Hospital.
“We feel sure she is treatable for epilepsy and we just need the chance to get her seen by people who feel they can help her.
“We have those people lined up and they are anxious to get started. But we’re still waiting for Jorja’s medical notes to be handed over and without her medical notes, we can do nothing.
“We have asked for them, our solicitor has asked for them and now we have engaged a human rights legal specialist to demand them. We should not even need to be having this conversation.
“So Jorja is effectively trapped in the Ulster Hospital, Dundonald, where the staff have been great.
“But we’ve been advised if our daughter is transferred to the RVH, it’s
unlikely the Ulster would accept her back as a patient. Our problem is if she keeps fitting, she’ll need intensive care and the intensive care unit is at the RVH, in the very place where we’ve been told there’s no hope for Jorja.
“As her dad I cannot allow her to be taken there, I just can’t.”
Jorja was born in February last year with a rare chromosome disorder called 1q43q44 deletion syndrome.
It causes developmental delay but is not life-threatening. However, it has triggered stage 4 epilepsy in the youngster and every seizure the baby suffers puts her life at risk. Robbie said: “She’s just a little girl who needs some help. She is our world.
“Developmental delay is not an issue for us. We will deal with that. But we need a chance to protect Jorja’s life and that means treating the intractable epilepsy.
“What harm is being risked to Jorja for every minute she is not given a chance of treatment to stabilise her epilepsy?”
Ms Hans ended her correspondence to the Belfast Trust saying: “We ask you to release Jorja’s medical records within 48 hours of this letter.”
She added that without the release of the notes, the firm would initiate legal proceedings in the form of an emergency judicial review.
A spokeswoman for the Belfast Trust, which holds Jorja’s medical notes from care at the RVH, said: “We cannot comment on individuals, however, we are able to release patient records when appropriate data protection procedures are completed.
“We continue to do everything we can to work with the family in this difficult time.”