A teenage girl died of breast cancer after her treatment was downgraded from “urgent” to “routine” due to her age.
Isla Sneddon, then aged 14, first went to hospital in the summer of 2022 with painful lumps in her breasts, but was informed that they were down to hormones.
She returned in 2024, aged 16, with similar symptoms, but despite her GP putting through an urgent referral due to a suspicion of cancer, it was downgraded in line with national guidelines.
Her family are now demanding a review of urgent cancer referrals, and has said she may have survived if her symptoms were taken as seriously as adult cancer treatment.
According to the Scottish Referral Guidelines for Suspected Cancer, any new discrete lump in a patient over the age of 30 should be treated as an urgent referral and seen within two weeks, while those under 30 are treated as routine.
Speaking to The Independent, her cousin Mairi McGee said: “Isla was a beautiful soul. She was kind, reliable and had the ability to make people feel seen. She loved music, makeup and all things pink.”
After her urgent referral was downgraded, she was eventually seen for a biopsy two months later in August 2024 and told it was likely to be a benign tumour, a probable giant fibroadenoma.
However, six days later her family were informed that there was a sack filled with fluid around her heart, and fluid in her lungs. As her condition deteriorated, she remained in intensive care at Glasgow’s Golden Jubilee hospital for 10 weeks until she was handed the devastating news that sarcoma had been found on the lining of her heart.
Sarcoma is a rare form of aggressive cancer that starts in the bones and soft tissues. In Isla’s case, the cancer had originated in her breast, and had spread to her heart, lungs and lymph nodes.
She was given just six to 12 months to live, and was able to continue her treatment at home until she died aged 17, just six months and two days after her diagnosis.
“We can’t stress enough that the care Isla received from doctors and nurses was outstanding. They really were amazing with Isla,” Ms McGee said.
“We think the guidelines regarding referrals should be changed. Had Isla been an adult, her case wouldn’t have been downgraded and that month or two delay could have been the difference between us having Isla with us today or even having more time.”
Her family is calling on the Scottish government and NHS Scotland to ensure paediatric referrals are subject to the same maximum wait times as adults, and for there to be a follow-up where a referral is downgraded or delayed.
They are also calling for clearer guidelines to help GPs and clinicians recognise and escalate signs of cancer in young adults and children without delay.
Scotland has one of the highest mortality rates for under-18s in Western Europe, with an estimated 300 children and young people dying each year.
Scottish Labour’s deputy leader Dame Jackie Baillie said: “This is an utterly heartbreaking case and my thoughts are with Isla Sneddon’s family.
“It is a scandal that Isla and her family were so badly failed and lessons must be learned from this awful case to ensure no more lives are needlessly lost in this way.”
She added: “There must be a review into how cancer referrals for young people are handled so we can ensure people of all ages get the swift, lifesaving cancer treatment they need.”
Isla’s family said: “Isla’s death has shattered all her family, friends and teachers. We are beyond devastated and can’t come to terms with it. This shouldn’t be happening to anyone let alone someone with their whole life ahead of them.”
A Scottish Government spokesperson said: “Our thoughts are with the family of Isla on their loss.
“The Scottish Referral Guidelines for Suspected Cancer have been developed to support primary care clinicians to identify those with symptoms suspicious of cancer and identify those who require urgent assessment by a specialist. These guidelines have recently been reviewed with input from clinicians and cancer charities to ensure they are evidence based and help support early identification of cancer.
“To support this a new primary care cancer education platform – Gateway C – was launched on 30 April 2024 in NHS Scotland, supported by NHS Education for Scotland. Gateway C provides innovative, and tailored information to support earlier cancer diagnosis efforts and enable effective decision-making.
“This free online platform is accessible to all primary care clinicians including pharmacists, dentists, and optometrists.”
