A 14-year-old girl could lose the ability to walk after her brain surgery was cancelled three times as NHS children’s services are stretched to breaking point.
Piper Miller, who has severe autism, needs urgent surgery to remove fluid on her brain that if unaddressed could also leave her unable to control her bladder.
But her operation has been pushed back three times in the past month due to emergency operations taking priority and severe short staffing made worse by junior doctors’ strikes.
Her mum, Toni Milner said the delays had had a “heartbreaking and gut-wrenching” effect on her daughter whose anxiety is “sent through the roof” each time she is told she is not having her surgery.
Piper’s story comes as NHS data uncovered by The Independent reveals at least 340 life-saving children’s operations, such as transplant and lung surgery, were shelved from April to December 2022, while 763 emergency operations were refused due to a lack of intensive care beds.
Children’s doctors and nurses told The Independent that intensive care services were “running on goodwill”, with even the country’s most famous children’s hospital, Great Ormond Street, having to “beg” staff daily to cover extra shifts.
Analysis of NHS figures from 2018-19 to 2022-23 also showed:
- Children’s intensive care units are looking after far more patients than the 85 per cent capacity level deemed “safe” by the NHS
- The number of intensive care “bed days” dropped from 29,000 from October to December 2019 to 21,000 in 2023
- The rate of surgery cancellations across nine trusts rose from 12 per cent in 2019 to 26 per cent in 2022
- The number of planned operations in those trusts plummeted from 1,018 a month in 2019 to 760 in 2022
- Specialist ambulance teams were forced to turn down 302 jobs because the team was “unavailable”
The news comes after the recently published NHS workforce plan failed to include any increase in staff for child nursing, prompting concerns the issue will only get worse.
Piper Miller’s mother, Toni Milner, is terrified of what will happen to her daughter if another operation is cancelled— (Piper )
Dr Camilla Kingdon, president of The Royal College of Paediatrics and Child Health, blasted the government over the “unacceptable” and “unfathomable” delays for children as 21,000 are now waiting more than a year for treatment, from an overall children’s waiting list of 416,000.
She warned there is a “fundamental lack of understanding nationally that investment in children has to be a priority”.
‘It just knocks her whole world’
Piper was diagnosed with fluid on the brain at Sheffield Children’s Hospital last year after complaining of “awful” headaches. In March this year, doctors said it had worsened and she would need surgery to prevent symptoms, including mood changes, worsening. Without intervention, they warned she could permanently lose the ability to walk or control her bladder.
Ms Milner told The Independent she was “terrified” about what will happen if her daughter’s next surgery on 25 July is cancelled and is concerned it will be difficult to persuade Piper to go to the hospital in future.
“I am so terrified because Piper cannot vocalise different symptoms [due to her autism] and I’m furious as we have to do a lot of preparing for Piper because she has severe autism, and we need to build her up for everything,” she said.
“We have to deal with the fallout and the aftermath of having to tell Piper it has been cancelled. It sends her anxiety through the roof, she has major meltdowns ... It’s difficult for all children but I do think it’s harder for those on the spectrum that have no real understanding.
“It just knocks her whole world. It’s heartbreaking, it’s gut-wrenching because she doesn’t understand. She’s all psyched up and [then]I must tell her no Piper we can’t go ... I just feel so deflated and trying to stay strong [and] I just don’t want another family to have to go through it.”
Craig Radford, chief operating officer at Sheffield Children’s NHS Foundation Trust said: “Across Sheffield Children’s, our teams are doing everything they can to see patients as soon as possible as we know how difficult and stressful it can be to wait to access care. However, unfortunately we sometimes have to cancel appointments or surgeries due to industrial action or because emergency cases take priority. In these cases we are working to reschedule appointments as soon as possible.
“We apologise to the children, young people and families impacted by any cancellations that happen.”
‘Running on goodwill’
The latest cancellation figures come as senior clinicians at Great Ormond Street Hospital told The Independent that exhausted staff were struggling to cope with demand.
Despite having the physical bed space for 23 intensive care beds, the trust only has funding to staff 17 and nine neonatal beds, meaning they have no other choice but to turn patients away.
Great Ormond Street Hospital is “running on goodwill”, a lead matron said— (GOSH)
Deborah, a lead matron for GOSH’s intensive care team, said the hospital was “running on goodwill” of exasperated nurses.
“We do beg, on probably a daily basis, for nurses to come in and they’re just like, you know, I’ve reached the end of it, I can’t do an extra shift anymore … [ there are] paediatric services out there who are really, really running on a knife edge,” she said.
Professor Sanjiv Sharma, GOSH’s medical director, said: “If you look at waiting lists, the children are growing at much faster rates than they are for adults and that’s in the context of us being not considered as part of any additional [national] funding. So you have the paradox of this growing waiting list for children – growing faster than adults – with reduced relative funding. That can’t be right as a society that can’t be right for us to be supporting.”
‘300 patients on our busiest day’
At the height of the 2022 winter crisis in December, when scarlet fever was spreading, Bimal, A&E lead for Alder Hey Children’s Hospital in Liverpool, said 300 children attended its emergency department, which is designed to accommodate only 150.
Tracy, nurse team lead for A&E, added: “You’d split the cubicles which meant the nurses were looking at double the number of patients or more, but that was safer than leaving the patients in the waiting room.”
Staff at Alder Hey A&E in Liverpool had double the capacity of children on their busiest day in December— (Alder Hey)
With greater numbers of emergency patients, the workers said it made maintaining levels of planned operations even harder.
Dr Camilla Kingdon said urgent action was needed to address staffing issues so children were getting the life-saving operations they need.
“We know that a lack of children’s nursing staff is a key reason children’s critical care beds are closed, and is a significant factor in the increase in same-day surgical cancellations. As such, we are deeply disappointed with some of the workforce plan projections, which announced a 92 per cent increase in adult nursing numbers but a 0 per cent increase in child nursing places.”
On growing waiting list and surgery cancellations, she said: “As a paediatrician, I have seen first hand the damaging impact that long waiting times have on children and their families. Many treatments and interventions must be administered within specific age or developmental stages – no one wants to wait for treatment, but children’s care is frequently ‘time critical’.”
Miriam Deakin, director of policy and strategy at NHS Providers, said trusts were doing all they can to bring children’s waiting times down but “high demand continues to outstrip capacity”. She added that better investment in specialist beds and a renewed focus on children’s waiting lists were urgently needed.
An NHS spokesperson said the service has been under “significant pressure” and increased cases of respiratory viruses and Strep A had resulted in more pressure than usual on children’s intensive care.
The statement said the NHS has “mutual aid” agreements in place with hospitals able to offer beds and that recent expansions of virtual wards would cover children.
This article was updated to clarify a statistic showing “bed days” not total number of beds.
