An Aberdeen mother has launched a campaign in memory of her five-year-old child amid claims doctors failed to diagnose her fatal brain tumour.
Angela Bain is campaigning for a life-saving “Amy’s Rule” to enable patients and families to raise concerns if they feel loved ones are not being treated properly.
Ms Bain believes her daughter Amy Lornie died unnecessarily in September this year because doctors and nurses “did not listen” to concerns her condition was deteriorating.
Yesterday Nicola Sturgeon said she would consider Ms Bain’s proposal when it was raised at first minister’s questions by North East MSP Liam Kerr.
Ms Bain has set up a petition calling for the rule, which would put in place a three-step procedure to allow patients and their families to flag-up concerns about treatment.
And she has written to Health Secretary Jeane Freeman outlining the circumstances behind her child’s death.
“Amy died because the doctors and nurses did not listen when I told them she was deteriorating,” Ms Bain, 34, wrote.
“The rule or law is based on a very simple thing – mother’s instinct.
“You know when a close family member who is unwell is deteriorating long before a medical professional does. It is this instinct which needs to be listened to.”
An online fundraiser set up by friends to help the family received about £4,350 in donations within weeks.
The page described Amy as a “beautiful five-year-old girl” with a love of musicals, dancing, singing and her family.
Last night Ms Bain said: “This is the worst thing for a parent and very traumatising. I don’t want this to happen to anybody else.”
According to Ms Bain, when Amy began being sick in April her GP said she had a bug.
A few weeks later, doctors said they thought it was a urine infection and she was given antibiotics.
Eventually her urine was tested and there was no infection so she was referred to a dietician on the basis that she might have an allergy.
She then lost her appetite and was being sick regularly. After her fifth birthday in August the vomiting became worse. She was prescribed tablets for reflux.
After becoming dehydrated and following more sickness, Amy was taken to the Royal Children’s Hospital in Aberdeen.
She had problems balancing and a nurse expressed concern that one eye was bigger than the other. At that point she did not receive a MRI scan, despite it being mentioned.
On her second night in hospital she went into respiratory arrest and was only saved by her mother’s actions at her bedside.
Amy finally had a MRI scan which showed a two-inch tumour and a bleed on the brain.
She received emergency surgery to relieve the pressure on her brain and was flown to Edinburgh Sick Kids intensive care, where doctors removed the tumour.
Tragically, Amy did not wake up because the bleed had severely damaged her brain.
Mr Kerr called on the first minister to consider “Amy’s Rule”.
An NHS Grampian spokesman said: “We are currently reviewing the circumstances around Amy’s tragic death.
“We are in regular dialogue with her family and met with her mother earlier this week to offer an update.
“As the review is ongoing we cannot comment further and we offer our sincerest condolences to Amy’s family, friends and all affected by her death.”
Amy’s Rule would be applied if a patient or family member was unhappy about their treatment or lack of it.
Amy’s mother Angela Bain has based her proposal on Ryan’s Rule, which exists in Queensland, Australia.
Ryan’s Rule came into force after the tragic death of Ryan Saunders, who died in 2007 from an undiagnosed Streptococcal infection, which led to Toxic Shock Syndrome.
When Ryan’s parents were worried he was getting worse they did not feel their concerns were acted on in time.
Like Ryan’s Rule, Amy’s Rule would be a three-step escalation process that would be followed if there is reason to believe a patient is not being treated properly.
Step one is going to the doctor or nurse on shift to raise concerns.
If it is felt nothing is improving, step two involves going to the doctor or nurse in charge of the shift to raise concerns.
The third and final step is to request a clinical review.
A nurse or doctor would undertake a clinical review of the patient and their current treatment.
An assessment would be done, giving clear findings about the patient’s care at that time and what, if any, urgent changes are required.