Northern Ireland

Delays to toddler's treatment for rare cancer lead to health service apology

20-month-old Alfie Lewsley who is awaiting treatment at the Royal for a rare form of cancer. Picture by Mal McCann 
20-month-old Alfie Lewsley who is awaiting treatment at the Royal for a rare form of cancer. Picture by Mal McCann  20-month-old Alfie Lewsley who is awaiting treatment at the Royal for a rare form of cancer. Picture by Mal McCann 

A COUPLE who were told over the telephone that their 20-month-old son had an aggressive form of cancer have spoken of their despair over health service delays in getting treatment started.

Christopher Overend and his partner Natalie Lewsley learned six weeks ago that their only child, Alfie, had a tumour in his spine that urgently required attention.

The north Belfast couple say their lives "have been turned upside down" since receiving the devastating news - but that their distress has been compounded by the NHS handling of the case.

They had made repeated trips to their GP since their little boy was six-months-old with concerns about a persistent chesty cough and colds. They had also noticed a small, protruding lump in his spine.

Following a referral earlier this year to Royal Belfast hospital for Sick Children, the toddler received a MRI scan on March 19.

Alfie Lewsley with his father Christopher. Picture by Mal McCann
Alfie Lewsley with his father Christopher. Picture by Mal McCann Alfie Lewsley with his father Christopher. Picture by Mal McCann

Within 24 hours of the scan, Ms Lewsley received a call from a doctor to her mobile informing of the terrible news.

The family received an apology the following day for the nature in which the diagnosis was given.

"I finished work at 4pm and was on my own in the car when I got the call at 4.15pm. I will never forget it," Ms Lewsley said.

"It was complete devastation and shock to be told that a one-year-old child who appeared to be so healthy and full of life has got cancer. I tried to ring back but couldn't get anyone. There was a meeting already planned for the next day and they said sorry for how they'd broken the news.

"I am trying to be positive for my son but it's hard when we keep getting different messages and there's no sign of treatment starting. Our oncologist is as frustrated as we are and trying his best."

Since March, Alfie's diagnosis has been changed twice, resulting in his treatment plans being stalled. He has also been sent home from hospital on two occassions in the past month after emergency admissions led to his procedures being cancelled.

Only yesterday his parents were told by doctors he has an extremely rare form of bone cancer, spindle cell sarcoma, that usually only occurs in adults over the age of 40. It remains unclear if he is to receive chemotherapy drugs or surgery.

Alfie, who his parents describe as a "mischevious, giddy, happy wee boy" who loves Peppa Pig, tractors and cars, is currently in no pain and not on any medication.

"Looking at him, you wouldn't think there was anything wrong with him," Mr Overend said.

"But he has been put through the mill over the past six weeks with being starved for different tests, then having procedures cancelled and going back and forth to hospital.

"We were given the first diagnoses six weeks ago, now that's changed again and we've been told they're not sure if he needs an operation or will have to go to London."

Mr Overend said he "can't eat and can't sleep" due to the stress of the situation.

"It's getting to the point where I am taking anxiety tablets as it is getting on top of me, I just want my son to get the right treatment and for it to start before he gets any worse.

"I work full-time in the docks area and in daily contact with dangerous chemicals due to the nature of my job, I can barely concentrate. Natalie is the strong one, this has just broken me and the way the health service have handled this has just made it worse."

The Belfast health trust last night issued an apology for the delays.

"We appreciate this is an incredibly difficult time for the Lewsley family. Whilst we do not discuss individual cases, we must ensure that patients undergoing treatment do so with minimal risk. We apologise for any delays in arrangements for Alfie's treatment," a spokesman said.

"We have spoken to the family, and will continue to do so, and ensure delivery of safe and effective treatment, based on best evidence appropriate to Alfie's case."