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 the cancer had spread to his spine and he had to wait months for surgery as all operations were cancelled due to Covid.
Due to that and the original scan that hadn't been flagged, little Alexander Josephs had to wait six months from his first seizure to surgery.
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, the young lad’s brain scan didn’t take place until two months later in mid-November.
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'."
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.”
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 in January, 2021, she was told by a clinical nurse specialist that the hospital couldn’t 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.”
After another month of suffering, Alexander had another MRI in February but what was supposed to be a scan of both his brain and his spine, turned out to be just his brain.
Rhonda said: “That was another mistake that was made, but it did show that his tumour was growing, so they arranged surgery as soon as they could. It wasn’t until the day before in the pre-surgery scan, that they noticed that it had spread to his spine as well.”
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.
Rhonda said: "I've realised that I've been living my life, scan-to-scan. Trying to be happy while living in a constant state of fear which gets worse when you get nearer to "scan day".
In light of what has happened, Rhonda explained how she felt about the alleged systemic errors that led to the loss of her son’s scans.
She said: “I do feel very upset that the results were lost but I also know that the resulting things happened because we were pushed into the timeframe of the height of the pandemic.
"I understand that everyone was just doing their best but that initial mistake, I am upset about that.
“However, I don’t know how MRI reporting would have been affected by the pandemic. In November [2020], I feel they made a mistake, I have no doubt about that.
“The other thing I find upsetting is that the government promised a certain amount of funding for brain tumour research and they haven’t delivered.
"From my perspective, I’ve found it really difficult to fundraise and I’ve even been trolled for trying. I know there have been cutbacks in the NHS but I still thought they were protecting Children’s Services.
“They really are just trying to do their best and I do appreciate everything the doctors and nurses are now doing for him but the fact that we have to fundraise and go abroad for these treatments.
"We’re one of 16 families all doing the same thing and if the government gave the funding they promised, we might not have to do this.
“At the worst, worst possible time that your child needs you and you’re having to fundraise, and all those nights I spent awake until two or three in the morning researching, and you end up wasting precious time that you could have spent with them.
“I believe that we have great minds in this country; great scientists and doctors who do amazing things with the little amount of money they’re given despite being massively behind America and Europe in cancer research.
“Just that statement: brain tumours are the biggest killer of children in the UK, coupled with: ‘and they receive the least research’, I just don’t know how those two sentences are allowed next to each other.”
Armed with unanswered questions about her son’s care, in July 2021, Rhonda decided to log a complaint using the Patient Advice and Liaison Service (PALS) and although she has been told that there is an internal investigation taking place, she hasn’t had a reply.
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.”
