Families are being left distraught as potentially lifesaving heart surgery for their children is repeatedly cancelled. Describing the situation as like "being left in limbo," they added that things are being made worse by the subsequent failure to then rebook those missed appointments.
One parent, who wished to remain anonymous, told of having to wait for eight hours at Bristol Royal Hospital for Children's paediatric intensive care unit in a space she described as being like a "cupboard" as there was "nowhere else for us to go". She added that, as night fell, there was still no bed available.
Meanwhile, having eventually been rescheduled for the next day, the operation was again called off. This time news of the cancellation came only after the young patient had already been put under and was en route to theatre.
READ MORE: Flu and pneumonia deaths in England and Wales at highest proportion since before pandemic
The only unit of its kind in the South West, it has previously treated children from as far away as Swansea - including one who required emergency heart surgery at just six days old. However, current pressures on the NHS have seen some procedures halted at the last minute due to a shortage of beds.
According to BristolLive, one child due to have a vital operation last November was told after arriving that lack of space meant the surgery would have to be rescheduled for the following day - despite the parents having phoned the hospital prior to admission to enquire about the availability of beds.
Nevertheless, after arranging overnight hotel accommodation the family returned the next morning, filled out the consent forms and the patient underwent anaesthesia. "With that, we saw the surgeon who said, 'They won’t let me have a bed, so we can't do the surgery,' added the mum.
"And then they sent us home. And we haven’t heard from a single person since, despite us ringing every week and the surgeon saying they would be rebooked for the following Monday." They claimed that the next last several weeks saw them leave numerous messages on a hospital answerphone, all of which received no reply.
"There’s so much emotional preparation that goes into thinking your child's going to have open heart surgery," the parent said. "All of us mums and dads, when we're told we're being sent home, just break down in tears in the hospital."
Adding that they had "no qualms with the surgical teams" for whom it "must be just as frustrating," she added, "A lot of us are lucky that our babies are young enough that they don't understand. But some parents have children that are 10 or 11 and have been in seven or eight times and still not had their surgery.
"They're now having to pay for their children to have counselling because they can't sleep at night because they think they're going to die, that their hearts are going to stop. We have to stay isolated as a family to protect out child against getting ill.
"We can't plan anything at all. We're living on a week-to-week basis." The same family did eventually receive a follow-up date for surgery, but that was then cancelled a few days later by phone.
Another child's parents, who also did not wish to be identified, said they too had recently had two surgery dates cancelled - each on the day of admission. Again, they refused to place blame on the hospital staff for the situation.
"I know the situation now is awful with the amount of pressure they’re under, as well as no bed availability and constant cancellations," one said. "Something really needs to be done."
Professor Stuart Walker, Chief Medical Officer for University Hospitals Bristol and Weston NHS 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. 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."
Read next:
- The 'impossible' situation Wales' ambulance workers are facing as winter pressures rise
- The three huge issues risking Cardiff's ability to host world-class events
- Cardiff Airport sees biggest drop in passengers across the entire UK
- Cardiff Airport valued at just £15m – less than a third of what the Welsh Government paid for it
- Woman caught sepsis and died after dog attack
