I felt sick at the letter I received 14 months after my toddler died… every time I think things can’t get worse, they do
A GRIEVING mum “felt sick” after receiving a letter 14 months to the day after the death of her son.
Imogen Holliday, from Deal, Kent, was sent the emailed message from Great Ormond Street Hospital (GOSH) in London.
The toddler had lost his fight for life at the specialist children’s hospital on March 29 last year following six months as an inpatient battling a rare virus and other health issues.
But on Wednesday last week – on May 29 – an appointment letter dropped into Ms Holliday’s inbox, in what she says was a cruel reminder of her son’s death.
The 36-year-old said: “The 29th is always a hard date.
“Every single month is hard and it was 14 months on the 29th since we lost Raffy, so I was struggling anyway.
“I just felt sick. I don’t understand how they don’t have a system that updates everybody when a child dies.
“Seeing ‘outpatient appointment’ on the letter, it makes you think just how careless, how insensitive, how inappropriate, how thoughtless, how uncompassionate can you be?
“It’s really hard to put into words because just when you think that it’s not going to get any worse and I can try and ease into this new way of life, something happens again.”
The date given for the appointment was September 20, 2022 – when Raffy was in the midst of his health battle.
To be sent the letter has traumatised Ms Holliday, who now suffers from PTSD triggered by medical matters.
She added: “I’d say I’m shocked but part of me isn’t because I have very low expectations of that place.
“I’d deleted the app so I had to find all my old passwords and everything – it took ages to log in.
“I knew what I expected it to be, and this wasn’t it at all.
“It’s so hard to put into words but Raffy’s death has had an impact on everything and this reminder has triggered a lot of negative feelings.
“The hospital have told me they’ll escalate it, but who knows what that means?”
It is not the first time GOSH has found itself criticised over its conduct towards the Holliday family.
In February last year, the hospital was forced to apologise after Ms Holliday overheard workers making grim reaper jokes just metres from where she sat with Raffy in a bone marrow transplant ward.
And a medical negligence claim is currently underway linked to concerns over Raffy’s treatment while alive.
The youngster was just eleven months old when he was diagnosed with MPAL – mixed phenotype acute leukaemia – in May 2020.
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He underwent multiple rounds of chemotherapy and experimental immunotherapy to fight three different types of cancer.
Although the treatment was a success, a bone marrow transplant in September 2020 led to other health issues, including Raffy being immunocompromised and contracting human herpesvirus 6 (HHV6).
It would later lead to the encephalitis – an inflammation of the brain – that would cause his death.
After losing Raffy, Ms Holliday started up a campaign group called RedDuck.
Taking its name from Raffy’s favourite colour and animal, RedDuck aims to raise awareness of HHV6 and make changes to the way it is treated by medical professionals, as well as providing support to families in similar situations.
At the charity’s first fundraiser last year – an art auction at the Astor Theatre in Deal – almost £10,000 was raised for the campaign.
The event was such a success that a second is set to take place on Friday, August 2, at the same venue.
A spokesman for Great Ormond Street said: “We are very sorry this has happened and have spoken to Raffy’s family to apologise. There is no excuse, and we can only imagine the distress it has caused.
“The letter, which was dated for an appointment in 2022, was accidentally added to our MyGOSH app due to a fault in a system upgrade. We use the app to try to make it easier to communicate with our families, but we have let them down in this case.
“We are investigating what has happened and will make all necessary changes as soon as possible to ensure this does not happen again.
“Our thoughts remain with Raffy’s family during this time.”