A parent of a teenager awaiting heart surgery in Bristol has told Bristol Live that their child has been left "traumatised" by repeated cancellations of planned open-heart surgery, forcing them to seek counselling. The family, who asked to remain anonymous, has had three dates for open heart surgery at Bristol Royal Children’s Hospital cancelled since September.
On one occasion, the parent said their child was about to go down to theatre when they were told it would not be going ahead, an experience that they say "traumatised" their child. Their most recent cancellation was at the beginning of December, but the parent says they have had no communication from the hospital since or in between the other cancellations.
They said: "The communication is just absolutely awful. They literally just ring and say, 'we've got a date for you. Are you available on such and such a date?'." Earlier this week, in response to complaints from two other parents of children on the heart surgery wait list, Professor Stuart Walker, chief medical officer for University Hospitals Bristol and Weston NHS Trust, said that "rescheduling planned surgery is always taken as a last resort".
Read More: Families 'in tears' after Bristol children's hospital heart surgery cancellations
The parent said: "I have other children. I work, and my partner works. I've got a dog. So every single time [they have a date for surgery] we've arranged childcare, we've got to find someone to have the dog. I've been having to go into hospital for a day or a night and having that time off work and then the following day off. They don't seem to think that it affects people.
“We're just in constant limbo. You just don't want to commit to anything, just in case on the off chance that they call you and say, ‘can you be ready to come in at such and such a date?.’ The last one was four days notice. It's just really hard.”
Adding to their worries is the mental toll cancellations are having on their child, who is due to take exams at school later this year. They’re worried about the long-term psychological and physical effects the delay in treatment may have.
They said: "It's just so stressful on my child. I'm having to pay for counselling at the moment because they've just not been coping well with it at all. My child understands what's going on, and they understand what the operation entails as open heart surgery, that they will stop their heart. It's a huge thing for a teenager.”
The parent said when they were told their child needed surgery it was explained that it needed to be performed before their heart became too enlarged.
The situation is such that the parent said, despite not being able to afford private treatment, they had begun considering it as a possibility. They said: “You get to that point where start thinking, ‘could we get the money from somewhere just to get it done?’ Because you just get so desperate, you just want your life to carry on. You want your child to be happy and to be able to live a life and go and do their exams and be with their friends.”
Discussing how the hospital could help families, the parent said: “I'd like them to communicate better to let us know what's going on. I'd like them just to be honest and say what the problem is. Is it that there are no beds? Or is it that there's no staff?
“Even if they could give just a rough idea - this is what we're doing, this is what we're trying to do to get rid of the backlog, we're trying to get more staff, we're sorting out the intensive care beds, this is what we're aiming for. But you're just left in complete limbo, having no idea whether it's even going to be this year.
"You know, even if they give me a date, and we get into the hospital until my child is actually in theatre being operated on, I don't think I'm going to believe that it's even going to happen."
Hospital trust's response
Professor Stuart Walker, Chief Medical Officer for University Hospitals Bristol and Weston Trust, said: “Patient safety is our first priority. Like all children's hospitals up and down the country, we are exceptionally busy at the moment.
"We are currently caring for a high number of children with acute respiratory infections arriving as emergencies. Sadly, many of them have needed intensive care support, which can result in us having to reschedule planned surgery. Every child on our waiting list is regularly reviewed by our senior consultant doctors to ensure they are correctly prioritised for treatment.
"Rescheduling planned surgery is always taken as a last resort. We understand how distressing this is for our patients and parents and make every effort to avoid it happening. We would like to apologise to any of our patients and parents who have experienced this and thank them for their patience.
"Whilst appointments are being rescheduled, our specialist nursing teams remain in contact with parents and carers. We recognise that for every patient, even if the surgery is not urgent, it is a difficult and worrying time and we understand that having contact with a clinical expert whilst waiting provides much-needed reassurance. We are very grateful for feedback from our patients' parents and carers, and we are looking at how we can improve our processes to provide them with more regular information and updates about their child’s care whilst their surgery is being rescheduled.
"Our hardworking and dedicated paediatric staff continue to provide safe and compassionate care during this exceptionally busy period."
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