A Cork woman who is on the waiting list for a double lung and heart transplant has hit out at the HSE for a lack of support as she prepares to make a gruelling journey by car and ferry to Newcastle for long overdue assessments.
Isabel Terry is under the care of a medical team in England as the transplant she needs cannot be done in Ireland.
She has to travel for an appointment next week and currently it looks like she will need to undergo an arduous journey involving 12 to 13 hours in a car as well as a ferry crossing and a number of overnight stops.
She was hopeful the HSE would arrange an air ambulance to transport her, but that support has not been forthcoming.
“You’d be looking at a one-hour trip compared to 13 hours in a car and two overnighters.
“Travelling will take so much out of me, it’s not suitable. The team in Newcastle are absolutely fuming. I had one of the transplant coordinators on to me the other day and she kept saying sorry. She couldn’t believe that this was happening.
"I haven’t seen the transplant team in three years and I have deteriorated so they need to see me.
"This isn’t right for a person in my health, I shouldn’t be doing this. If I travel to Dublin to see my sister, I need to rest and nap after it and that is just a drive of a few hours.”
Ms Terry requires oxygen 24 hours a day as a result of a condition referred to as pulmonary atresia and cannot travel on a commercial flight.
She has been waiting more than three years to travel for an appointment with her transplant team in Newcastle even though she is meant to see this team every six months.
"Basically when I said a friend had offered to drive me, they said in Newcastle that I shouldn’t be doing it, that type of travel is not right for me.
"But because no one has come back to them from the HSE, their hands are tied."
Ms Terry’s appointment is next Tuesday and the current plan is for her friend to drive from Cork to Belfast on Sunday, getting the ferry to Scotland and then driving on to Newcastle.
They will have to stay in B&Bs or hotels along the way.
“I also have to organise the oxygen to bring with me along the way, I don’t even know if that is going to be a health and safety issue.”
She said the HSE have offered to cover the cost of the ferry and the car, under the Treatment Abroad Scheme, but no other expenses.
“So I’m expected to pay for two nights accommodation.”
Ms Terry has spent almost 14 years on transplant waiting lists.
She was assessed as needing a heart transplant in 2003 while in the care of the Mater.
By 2009 her condition had worsened and she was assessed as needing both lung and heart surgery.
At that point, her care was transferred to the Freeman Hospital in Newcastle and she has since been on their list for a heart and double lung transplant.
“Because I am not on the transplant list in the Mater, I am not under the care of any team in Ireland. They can’t do my transplant in Ireland so I am left to deal with it myself. I am an Irish citizen, they have a duty of care.
“This will take weeks for me to recover from.”
The HSE were contacted for a comment but have yet to respond.