“We are not a statistic,” a tearful mum declared last night during a meeting to discuss the future of children’s heart surgery in Northern Ireland. “They are our babies. They all have names and have faces. Real people, not numbers.”
This heartfelt plea was issued by one local mother as she broke down during a public consultation meeting at the Everglades Hotel, with many other concerned families also voicing their fears at the possibility of losing the paediatric heart surgery services in Belfast.
Parents of children with heart problems took the opportunity to put their concerns to a panel of experts – all of whom are now tasked as a working group to carry out the consultation into the future of the surgery services here.
During the exchange, the frustrations of families became clear.
The event was chaired by Wendy Austin, BBC, who began by assuring local families that no decision has yet been made and that the views of Derry people were important in informing this case.
Among those on the panel were Dr Miriam McCarthy, Consultant in Public Health Medicine, Dean Sullivan, Director of Commissioning, Dr Frank Casey, Consultant Cardiologist for the Belfast Trust, Rosie Byrne, Lead Nurse for the Belfast Trust, and Irwyn McKibbin, Chair of the parent-led charity Heartbeat NI.
Many at the meeting said they found the terms and vocabulary used and its powerpoint presentation “complex.” One grandad of a sick child told the panel: “I find the consultation forms very confusing, you would need to be an expert and I am not an expert.”
The most emotional contribution of the evening was that of Hayley, a young mother who broke down when describing how she depended on Belfast services both before and after the birth of her son, Matthew.
“This is not a question, as such - more or less a plea,” Hayley said. “We are not a statistic, they all have names and have faces. They are our babies. Real people, not numbers. Nobody can understand – until it comes to you. They are our precious gift and we just want the best for them...
“I was just lucky Matthew’s condition was picked up... Belfast were so caring, I can’t thank them enough. I had no fear of having him there in the Royal,” she said.
Families spoke of their wish to have services retained in Ireland. One mum asked “why are our children being used as guinea pigs?” while another commented that at least a service in Dublin would mean the child staying in the same country and having family nearby to visit.
Family involvement is the number one priority for Irwyn McKibbin from Heartbeat NI, and he agreed that this was a vitally important point to consider. “Family support is made so much easier when they’re in the same country,” he said. “The main thing I want to see is some kind of involvement with Dublin. To be quite honest, what’s happening is not good enough... there will always be children with heart problems.”
One father, James, described the hardships of leaving his family and having to travel to England for his child’s surgery, where they remained for four months by his bedside.
“We had to leave our family and prepare our other children... we had to stay there for four months, and the difference was like day and night,” he said. He admitted he was also worried about the standard of care on offer in England with so many more patients to see. “It was understaffed, and there’s no way in sending surgery across the water that that will get any better.”
Another father voiced his opposition to the idea of sending children to England by air for heart surgery. “If we move the surgery, what about travel? Would a child get there in event of something like an ash cloud? Who would pay if something goes wrong?”
Meanwhile, Dr Casey spoke of the importance of retaining skilled staff in Ireland. “This is a big issue, he said, and it’s very crucial in considering the impact of any decision.”
Although poorly attended, the meeting evoked many sensitivities and showed the strength of feeling locally about retaining heart surgery services. The Consultation process ends next month and the Health Minister Edwin Poots is expected to deliver his decision in early 2013.
SDLP Foyle MLA, Colum Eastwood, believes the retention of Paediatric Cardiac Surgery at the Clark Clinic in the Royal Hospital is essential.
“A situation whereby sick babies and children would be forced to travel to Bristol, Birmingham or London for emergency surgery is intolerable,” he said. “The SDLP has been actively lobbying to encourage the exploration of a link up with paediatric surgeons and facilitations in Dublin in order that an all-Ireland co-operation could help to ensure the survival of the Clark Clinic.
“Any alternative whereby the current service is removed would not only be unimaginably cruel for children and their families, it would also go against the will of the thousands who have called for the service’s retention,” Mr Eastwood said.