Clerical error leaves mum fighting to save life of her son, 8, after his MRI scans were lost during pandemic

A clerical error has left a mother fighting to save her eight-year-old son’s life after his MRI scans showing an aggressive brain tumour were lost in the NHS and left undiagnosed during the pandemic.

When he was finally diagnosed with the cancer that had spread to his spine, he had to wait months for surgery as all operations were cancelled due to the pandemic.

Due to that and the original scan that had not been flagged, Alexander Josephs had to wait six months from his first seizure to surgery.

‘This just came out of the blue’

In the middle of the night in September 2020, Rhonda Josephs woke up to find her son having a major seizure in his bedroom.

The 44-year-old said: “Alexander was exceptionally fit and well - he was strong, sporty, had heaps of energy, so this just came out of the blue.”

By the time the ambulance arrived, Alexander was still suffering and he was rushed to A&E near the family home in Plumstead, where he was admitted.

Upon arrival at the Queen Elizabeth Hospital in Woolwich, doctors thought it was a “one-off” but after seeing a paediatrician, Alexander was sent off for a routine MRI and an electroencephalogram (EEG) brain scan as a precaution.

However, with the pressure of the pandemic building up, his brain scan did not take place until two months later in mid-November.

Mum was thinking ‘where are the results?’

After waiting a month for the results of the scans to come through, Rhonda began to worry.

She said: “By mid-December, I was thinking, ‘where are the results?’ I didn’t know how long it would take so I thought that no news must be good news.

"I thought he was going to be okay and they would contact me if there was a problem.”

Just days before Christmas, Alexander had another seizure and he lost movement on one side of his body.

Rhonda rushed her son back to the Princess Royal University Hospital A&E in Bromley, where she explained that he had had a seizure before and she was waiting for the results.

She said: “I took him to a partner hospital of Kings and they said that they could look up his [outstanding] results, so the A&E doctor went to look them up and afterwards came into the room and said, ‘Oh yeah, we know what it is, he has got a brain tumour’.

“He said that to me, in front of [Alex]Xander, who had just turned seven.

“He said that it was okay and on the report, it looked like a slow-growing tumour and he told me it was fine and told me to go home and ring back tomorrow."

After an agonising effort trying to get hold of the hospital, Rhonda managed to get in contact with the paediatrician who they originally saw at the Queen Elizabeth Hospital, who told them to come straight in and Alexander was scanned the next day.

The consultant paediatrician apologised to the mother-of-two, allegedly admitting to the clerical error that resulted in the scans not being flagged.

Rhonda said: “He said to me: ‘We’re really sorry but for some reason, the MRI wasn’t flagged in the system as him having a tumour, so it has just been sitting there’."

‘My maternal instincts kicked in and I just knew it was cancer’

After finally being seen, Alexander’s case was transferred to the neurology department where Rhonda and her husband Jermaine, 45, had a meeting with the doctors in charge of their son’s care.

Despite being told that Alexander would have to wait for treatment, the couple decided to do their own research and found that not only was this type of tumour rare in children but there were also two types.

She said: “There’s a slow-growing benign one that isn’t normally picked up until people are in their 50s and there is a cancerous version that is much faster growing, but my maternal instincts kicked in and I just knew it was cancer.”

Instead of being a “slow-growing” tumour, it was in fact a “highly aggressive, high-grade Glioma tumour” and within just eight weeks, the cancer had spread to his spine.

Rhonda said: “I begged the surgeons to perform surgery but they persuaded me to go on a ‘wait and see’ list which is their protocol but I think that needs to change.

"The main thing I was told in that meeting was that he [the surgeon] could get to it [the tumour] and remove it and I was so relieved, but they told me to wait and see what it does.

“But by this point, he was having several seizures a day and he was on strong medication with terrible side effects. Our usually bright and bubbly little boy was becoming seriously ill.”

‘It was just terrible timing’

Rhonda’s family followed the doctor’s orders and took Alexander home, only for him to suffer three seizures on Christmas Day.

Spiralling into panic, they started begging the doctors to let them go ahead with the elective surgery to remove the tumour.

But on 2 January 2021, she was told by a clinical nurse specialist that the hospital could not perform surgery because the ICU was being deployed for Covid patients.

Two days later, King’s College Hospital NHS Foundation Trust publicly declared that they had paused all planned cancer surgeries.

Rhonda said: “At that point, I felt broken. We were trapped at home because of lockdown. I was trying to look into flying abroad but all the flights were cancelled."

Despite their lives being turned upside down, Rhonda remained compassionate towards the NHS and to those involved in her son’s care.

“I do understand that they wouldn’t want him to catch Covid after having brain surgery but it was just this combination of terrible timing and the NHS was just trying its best to cope, and unfortunately that impacted our son.

“However, I feel like the hospital shouldn’t have been put under that pressure in the first place, like why weren’t they using the Nightingale hospitals - why did it all fall on Kings, why did they have to shut their ICU? There are so many questions we still don’t have answers to.”

‘He had to go through it all over again’

Finally, in March, Alexander had ten-hour brain surgery to remove the aggressive tumour and according to his mum, he bounced back “amazingly well” and even started going to school to see his friends.

However, within just weeks of having the surgery, the family received the dreaded news that the tumour had already grown back.

Rhonda said: “Not only did Alexander have to endure a painful spinal surgery but as soon as his little body could handle it, two weeks later, he had to have another brain surgery. He had to go through it all over again.

After enduring the surgeries, Alexander started a six-week intensive course of radiotherapy to try to destroy what was left of the tumour in his spine and brain.

The small but mighty warrior then started a course of experimental chemotherapy, which was suggested to the family by a doctor in the US who saw their fundraising appeal online.

Rhonda explained: “Ever since we started that GoFundMe page for Alexander, we took some advice from a doctor in America who backed our decision to go ahead and do the immunotherapy treatments.

"He said that we should try to do everything because Xander’s mutations are particularly aggressive.

“He also spoke to us about the inhibitor chemo treatment, Dabrafenib, that Alexander is on now because it is also a trial medication given to adults with skin or lung cancers.

“But because they’re seeing the same mutation more and more in children’s brain tumours, Xander is the first child in the UK to be put on that drug after radiotherapy and I think we were only offered it because they knew we had the money from the fundraising.

“This is all thanks to the Royal Marsden cancer hospital who have gone above and beyond to put us on a pay arrangement, where the NHS provides the monitoring scans and we just pay for the drug."

Although the Royal Marsden is hopeful about Alexander’s outcome, there is still only a 20 percent chance he will survive but the family are hopeful that their fundraising efforts could help them access more pioneering treatments in the future.

What King’s College Hospital NHS Foundation Trust said

A spokesperson for King’s College Hospital NHS Foundation Trust said: “We want to provide high quality care for all our patients.

"We are investigating the serious concerns raised by Mrs Joseph and we will be responding to her directly in due course.”

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