Growing concerns over doctors’ failure to spot cancer in children

Youngster Charlie Smith suffered secondary cancer which led to his death, aged 11.

Experts have expressed growing concern over the number of childhood cancers that are missed by doctors as Scottish families tell of their own harrowing experiences of delayed diagnosis.

Research suggests gaps in doctors’ training on childhood cancers leaves them less able to detect the first signs of paediatric malignancies.

That concern is backed by Scottish parents whose children were finally diagnosed only after weeks, and sometimes months, of symptoms.

Three parents have told The Sunday Post how their children’s cancers were only detected after several visits to doctors.

They include nurse Riona Smith, whose son Charlie died last November.

Now a major international research project – the International Benchmarking of Childhood Cancer Survival by Stage Project – or Benchista – shows the UK is falling behind other countries in early detection of cancers that affect almost 2,000 children aged up to 15 every year in the UK.

It is being presented to a UK Department of Health and Social Care task force currently investigating late diagnosis.

The research by leading paediatric oncologist Professor Kathy Pritchard-Jones of University College London, which includes Scottish data, reveals five major childhood cancers are diagnosed at a later stage in the UK than major EU countries.

Pritchard-Jones said: “We know that for some tumour types the UK has evidence of later diagnosis compared to some Western European countries such as France and Germany.

“However, it is not as simple as slower diagnosis in primary (GP) and community care. There are also big differences in the paediatric training of primary care professionals in different countries.

“This may be associated with lower rates of ‘incidental’ detection in a child with vague symptoms.”

She suggested a possible remedy would be to improve parent access to GPs who have had paediatric training, with practices highlighting to parents which doctors have this knowledge.

She said: “GPs are expected to have undergone training in postgraduate obstetrics but not paediatric postgraduate training and around 30% of their work involves children.

“There should be a paediatric lead doctor in most practices that parents can identify, and that other GPs can seek advice from. This happens in other European countries.”

Calls for earlier diagnosis of childhood cancers are also being made by leading childhood cancer charity CCLG: The Children’s & Young People’s Cancer Association.

Its recent study into survival of cancers in UK children also reveals a later diagnosis of malignancies in children, compared with other major European countries.

The study, in the British Medical Journal, said: “This (later diagnosis) means higher risk – more intensive therapies for a cure.

“Some children and young people are known to experience delays to diagnosis which may further contribute to poor outcomes.”

The charity funds research into childhood cancers and supports families and is launching awareness packs for parents and doctors this year.

It comes as a west of Scotland nurse told The Sunday Post that she met a GP at a paediatric cancer lecture who said she was attending because she felt paediatric training was inadequate.

A confidence-building charity, Beads Of Courage, helps children through chemotherapy treatments with prizes of beads awarded after every hospital care. It also works to make parents and schools aware of the signs of childhood cancer.

John Drummond, chairman and co-founder of the charity, said: “Our programme helps children document their way through treatment.

“It makes it more bearable for the children and their parents as chemo treatment in hospital can takes months for some protocols.”

John and his wife Sarah were devastated when their son Ted, now 17, was diagnosed with leukaemia at 18 months old.

The Royal College of General Practitioners rejected any arguments that paediatric training could be improved.

RCGP Scotland Vice-Chair Dr Chris Williams said: “GPs are well prepared to consult about potential cancer symptoms occurring in paediatric patients with knowledge first acquired at medical school, and this learning is developed upon during GP training.

“The detection of cancer in paediatric patients can prove to be difficult as symptoms may be non-specific and the number of presentations is relatively small. The statistics showing that childhood cancers diagnosed at later stages are regrettable and more must be done to enable earlier detection and prompt referral to involve specialists.

“GPs have specific training on how to identify symptoms of cancer amongst children and adults alike.

“In modern general practice, there will be a range of specialist interests within the practice team.”

He added that GP Quality Clusters (a recent way of organising GPs in Scotland into groups made up of often five to eight practices) promote collaboration and quality improvement that helps them to work together.

“We continue to call on the Scottish Government to reinvigorate GP Quality Clusters,” he adds.

“The Royal College of General Practitioners provides learning resources to GP registrars and fully qualified GPs on a wide range of paediatric health issues to ensure that GPs are equipped to provide the best possible patient care.”

Charlie’s story

We wonder if his cancer had been detected earlier, would he be alive?

Riona and Liam Smith’s son Charlie was just 11 when he died from secondary cancers which the Forfar couple say took months to diagnose.

He had successful treatment in infancy for kidney cancer and subsequent care for a thyroid malignancy, but the after-effects of radiation were missed after he developed leg pains in August 2023.

Nurse Riona, whose work can include cancer patients, says: “Charlie was a wonderful child, loved dearly by all who knew him.

“We are left wondering if his cancer had been detected earlier, would he still be alive today?

“The aches in his legs started in August 2023 with hospital admission in December 2023, then eventual diagnosis in February 2024.

“They had been dismissed by a GP as growing pains. Then, in Ninewells hospital, he had blood tests and X-rays but was in such pain he could barely sleep.

“We were assured there was no obvious cause, but he needed morphine for pain relief.

“A scan over Christmas was impossible, we were told, and we left hospital in December.

“I called the hospital the following week and by then Charlie was in such leg pain he could not tolerate an adequate scan.”

Back pain in February prompted a GP to refer him to Ninewells, but he could not endure a full scan.

“Still no diagnosis or impression of urgency from the hospital,” Riona said.

An MRI scan that month revealed a pelvic tumour and Charlie was transferred to the Royal Hospital for Children in Edinburgh where he had surgery to relieve the pressure on his spine. A malignant peripheral nerve sheath tumour was diagnosed, a secondary effect of the radiation treatment in infancy.

Riona said: “Charlie could not tolerate a new cancer drug and became delirious, sick and a new scan revealed brain cancer.

“He passed away at home surrounded by us all.

“We discovered that a Ninewells doctor who had seen him in December 2023, had forgotten to put in a referral for a scan. Children desperately need earlier diagnosis of cancer because it may well lead to better survival.”

NHS Tayside said: “NHS Tayside has carefully reviewed the concerns raised and is very thankful to the family for providing feedback which will help improve future care.

“As a result, we have implemented changes including improved access for families and carers to contact the ward when they have ongoing concerns, ensuring their voices are heard promptly. We have also reviewed the criteria for requesting further investigations, so that any potential changes in a patient’s condition can be identified and acted upon more swiftly.

“We would invite the family to contact our Patient Experience Team with any further concerns.”

Harlan’s story

It was hard to understand exactly what was wrong as he was only three

Kim and John Wellington’s son Harlan was only three when he was diagnosed with a brain tumour three months after first showing symptoms.

Kim, 34, an Open University environmental science student from Angus, explained his symptoms started in December 2023.

“It was hard to understand exactly what was wrong as he was only three so couldn’t articulate himself,” she said.

“The doctors first thought it was something viral, reflecting on how he was growing, but it got to the point where we really had to push to get him seen by hospital specialists because he struggled to keep his balance and was often sick.

“He even lost confidence in walking down the steps at our door and couldn’t sit for long without losing his balance and falling over.

“He developed a lazy eye (squint) and even when he was referred to hospital, they still didn’t know what was wrong and were asking if we had lazy eye running in the family.

“A CT scan discovered that the lazy eye was caused by pressure on the back of his eyes and he was blue-lighted to Edinburgh where surgery relieved that pressure.”

Harlan’s brain tumour was a pineoblastoma, most commonly affecting children aged one to 12 years.

Treatment involved paediatric proton beam therapy in Manchester.

The Wellington’s older son Logan, nine, was monitored after birth because John carries a rare genetic mutation which makes cancer more likely.

“But Harlan has missed out on this, and his cancer diagnosis was delayed,” Kim added.

“We are grateful that he is still here but surely much more can be done to detect children’s cancers earlier.

“Is it a training issue which needs addressed?”

Wren’s story

Medics dismissed him as a sickly baby but he had kidney cancer

Megan and James MacLeod, from Currie, near Edinburgh, say their son, Wren, was sick for the first five months of life but was dismissed as a “sickly baby”.

“Wren is our second child and I knew it was not usual for babies to constantly posset or bring up their feeds,” said student nurse Megan, 28.

“Our GP surgery could not find an obvious cause and he was thought to be a “sickly baby”. We worried because he was not feeding well.

“He was prescribed Gaviscon to help him keep down feeds and we eventually took him to the Royal Hospital for Children in Edinburgh.

“James and I noticed a lump in his stomach, alerted doctors and he was diagnosed with a Wilms tumour (a kidney cancer more common in babies)”

At five months old he had a kidney removed and had to undergo weekly chemo to eradicate the cancer from his body. Their older child, Rose, eight, was cared for by family during the months of hospital chemo and James returned to his job as a high school teacher.

“If there is a delay in diagnosing cancer in children, should doctors’ paediatric training be improved?” said Megan.

“If research shows a later diagnosis of childhood cancers in the UK, what are we doing to address this?

“We look forward to the findings of the Dept of Health and Social Care task force.”

Megan was inspired to train in paediatric nursing by Wren’s cancer experience.