A Dublin mother waiting for a second pancreas transplant has made an emotional appeal to Beaumont Hospital and the Health Service Executive to re-open the transplant programme.
Ciara Kelly, a mother of two from Whitehall in Dublin, says she is getting weaker by the day while uncertainty prevails over the transplant programme's future.
No pancreas transplants have been carried out since the start of this year following the retirement of David Hickey, the surgeon who pioneered the treatment at Beaumont and who has performed all 118 pancreas transplants so far done in Ireland.
Beaumont has said the service will transfer to St Vincent’s hospital but there is no indication when transplants will resume.
Ms Kelly, one of 11 patients waiting for a transplant, joined dozens of others who require post-transplant care at a meeting at the weekend to protest the closure of the programme.
She has been on the waiting list for three years but urgently requires treatment for her immune system before she could accept a donated organ.
“I’m stuck. Day by day my body is getting weaker. I’m afraid that by the time they sort this out, my body will be too weak for a transplant.”
Ms Kelly says the hospital and the HSE have told her they cannot help, and they have refused to fund treatment abroad for her immune system. “My children can see the deterioration in me, yet no one seems to care.”
She says she has written to Minister for Health Leo Varadkar, at both his ministerial and constituency offices, but never received a reply, "not even an acknowledgement".
Mr Hickey, the former Dublin GAA footballer who spent most of his working life at Beaumont, suggested the hospital and the HSE could find themselves facing corporate manslaughter charges over the fate of patients who were dying on the “so-called” waiting list.
There is also anger over the closure of a specialised outpatient clinic and a direction by the hospital that post-transplant patients at high risk of infection must go to overcrowded emergency departments for urgent care.
More than 50 people attended the meeting, organised by three transplant patients. Fiona Burke, a double transplant recipient from Annaghdown, Co Galway, said Beaumont had left patients "in limbo".
Ms Burke said she hadn’t looked back a single day since receiving new kidneys and a pancreas transplanted by Mr Hickey.
She got married in 2002 and later gave birth to a boy, Jake, who is now a six-year-old and “full of life”.
‘Thrown to the wolves’
“Everything was going well until last Friday, when I was told the outpatient clinic in Beaumont was closing and I should access services in Galway,” she told the meeting.
Mark Murphy, chief executive of the Irish Kidney Association (IKA), said he had never seen a group of patients being "let go" by a hospital as transplant patients had been since January. "You've been thrown to the wolves," he told the meeting.
Mr Hickey said transplant patients in Beaumont were treated in a Portacabin, with a view of a toilet through the window. “Amnesty International would have it closed down as a prison if it could,” he said.
Beaumont declined an invitation to attend the meeting, saying direct communication with transplant patients and engagement with the IKA was the most appropriate way to deal with the issues.
A number of speakers at the meeting were critical of the association for not advocating more strongly on the issue. “There has been nothing from the IKA other than woolly comments,” said Mr Hickey, who said it needed to give the hospital “a kick in the bollocks” and stop being “nice”.
Beaumont says it has agreed with St Vincent’s to develop a “collaborative approach” to pancreas transplants, beginning with assessment clinics at the end of July.