Parents of children awaiting heart surgery in Bristol feel they are being “left in limbo” due to repeated cancellations. They also say poor communication afterwards about rescheduling has increased their stress.
The Paediatric Intensive Care Unit at Bristol Royal Children’s Hospital is the only unit of its kind in the South West, with children travelling from as far away as Cornwall and Wales to receive open heart surgery. But NHS pressures have seen some surgeries cancelled at short notice due to emergency patients taking priority for beds.
Parents of two children have shared their experience as they ride the "emotional rollercoaster" of waiting for elective surgery. The hospital trust has apologised for the distress caused and said cancellations are always a "last resort", but that it is seeing increased demand due to "a high number of children with acute respiratory infections arriving as emergencies".
Read More: Children's hospital in Bristol sees huge demand as mum reports 'queues in corridor'
A parent who spoke to Bristol Live anonymously said their child was referred for vital heart surgery in August. They next heard from the hospital in November with a week's notice for the surgery, and after hastily arranging care for their other child, then ringing ahead on the day before pre-admission to check a bed was available, they made the journey to Bristol.
The parent said upon arrival they waited for eight hours in a space she described as being like a "cupboard" as there was "nowhere for us to go". As night time came there was still no bed available.
According to the parent's account, the hospital rescheduled the surgery for the following day and arranged for hotel accommodation. The next morning they returned, filled out the consent forms, underwent anaesthesia and were told that someone would take them to the theatre.
The parent said: "With that, we saw the surgeon who said, 'they won’t let me have a bed, so we can’t do the surgery.' And they sent us home. And we haven’t heard from a single person since.
"This is despite ringing every week. Despite the surgeon saying they would be rebooked for the following Monday.”
At the time of speaking to Bristol Live it had been seven weeks since they had been sent home without any follow-up. They said the only point of contact they had was an answer phone on which they reported leaving messages on.
They said: "You're signing a consent form saying if your child doesn't have this surgery, the consequence is death and then on the way to the theatre, you're told to go home because they don't have a bed, and then you don't hear from them again.”
'In tears'
The parent said they have “no qualms against the surgical teams" and they were sure it was "just as frustrating for them". They said: “There’s so much emotional preparation that goes into thinking your child's going to have open heart surgery.
"To go through all that stress and trauma to be sent home and there's no follow-up. All of us parents, when we’re sent home, just break down in tears in the hospital.
“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 they've been in seven or eight times and 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, they think they're heart's going to stop, and they can't go to school because they think they're going to catch something.
“We have to stay isolated as a family to protect against bugs. We can't plan anything at all. We're living on a week-to-week basis." Since speaking with us, the family reported that they did receive a follow-up date for surgery, which was later cancelled a few days later in a phone call.
Second family's account
A second parent also anonymously shared their recent experience at Bristol children’s hospital with Bristol Live. Their child has been under the care of the centre for several years, and they said: “We do always expect cancellations because you know that emergencies come in, but that’s always communicated it to us very well in the past."
The surgery for their child, who is classed as high-risk, was scheduled for November and then again in December, with both said to have been cancelled on the day of admission. Speaking to Bristol Live, they said: “We haven’t had any form of contact from anyone since mid-December...we’ve left messages, and calls never seem to be returned.
“With the surgery being so high risk, it’s a worrying time anyway and has a huge emotional effect on the whole family. I know a lot of other families said they don't feel like the hospital understands the impact and just how much it affects your life and how you put your life on hold.
“Hospital staff are all wonderful at their jobs. They really do go out of their way to care for the children and babies they look after. We know that if it wasn’t for all their amazing care and best efforts in the past that we definitely wouldn’t have our child here now.
"I know the situation now is awful with the amount of pressure they’re under, as well as no bed availability and constant cancellations. But something really needs to be done.
"We are all very grateful for the care they give to our children that and I think that was maybe what stopped some of us from speaking out sooner. It’s not aimed at any one particular person or any particular individual failing, but there seems to be this wider failing that's going unacknowledged at the moment and the burden that it’s putting on parents who are already in like a kind of precarious limbo situation."
Since speaking with Bristol Live, the family has received a new date for surgery.
Bristol Heart Heroes
Nicola Morris, the administrator for Heart Heroes in Bristol, a regional charity that helps children with heart conditions, recognises parents' concerns and sees them as symptomatic of wider pressures facing the NHS.
She said: "We as a charity are aware that families are being affected, and we have had discussions and continue to talk to the hospital about the need to just communicate a little bit more around how children are monitored internally when cancellations happen."
Nicola, who has a son with a heart condition, explained that scheduling planned cardiac surgeries is particularly vulnerable to extra pressures on the NHS, because of the lack of intensive care beds across the country. Although the open heart surgeries that patients and their families are waiting for are necessary and vital, because they are considered elective, those in an emergency take priority.
She said: "It's a real emotional roller coaster. No parent wants to put their child through a heart operation, but you also know that if you don't, that's not good for your child. So, you do build yourself up to those operations and then obviously, if it then gets cancelled, you go through a real low, and then your life is in limbo while you're waiting. You almost can't move forward until that surgery is done."
Hospital trust's response
In response to the complaints, 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, 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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