I felt bad about the letter I received 14 months after my son’s death… every time I think things can’t get worse, they do

A grieving mother “felt bad” after receiving a letter 14 months after her son’s death.

Imogen Holliday, from Deal, Kent, received the email message from Great Ormond Street Hospital (GOSH) in London.

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The child lost his fight for life at the specialized children’s hospital on March 29 last year, after six months in hospital fighting a rare virus and other health problems.

But on Wednesday last week – May 29 – a nomination letter landed in 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 difficult date.

“Every month is difficult and on the 29th it had been 14 months since we lost Raffy, so I was struggling anyway.

“I just felt bad. I don’t understand how they don’t have a system that updates everyone when a child dies.

“Seeing ‘outpatient visit’ in the letter makes you wonder how careless, how insensitive, how inappropriate, how reckless, how insensitive you can be?

“It’s really hard to put into words because just when you think it’s not going to get worse and I can try to get into this new way of life, something happens again.”

The scheduled appointment date was September 20, 2022 – when Raffy was in the midst of her health battle.

Sending the letter traumatized Ms Holliday, who now suffers from medically triggered PTSD.

She added: “I would say I’m shocked, but part of me isn’t because I have very low expectations for this place.

“I deleted the app, so I had to find all my old passwords and everything – it took forever to log in.

“I knew what I expected it to be, and it wasn’t like that at all.

“It’s so hard to put into words, but Raffy’s death had an impact on everything and this reminder triggered a lot of negative feelings.

“The hospital told me they are going to escalate the situation, but who knows what that means?”

This is not the first time GOSH has been criticized for its conduct towards the Holliday family.

In February last year, the hospital was forced to apologize after Holliday overheard staff making jokes about the grim reaper just meters from where she was sitting with Raffy in a bone marrow transplant ward.

And a medical negligence claim is ongoing, linked to concerns about Raffy’s treatment in life.

The young man was just eleven months old when he was diagnosed with MPAL – mixed phenotype acute leukemia – in May 2020.

He underwent several rounds of chemotherapy and experimental immunotherapy to combat three different types of cancer.

Although the treatment was a success, a bone marrow transplant in September 2020 led to other health problems, including Raffy being immunocompromised and contracting human herpesvirus 6 (HHV6).

This would later lead to encephalitis – an inflammation of the brain – which would cause his death.

After losing Raffy, Mrs Holliday started a campaign group called Red Duck.

Named after Raffy’s favorite color and animal, RedDuck aims to raise awareness about 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 Theater in Deal – almost £10,000 was raised for the campaign.

The event was such a success that a second one is scheduled to take place on Friday, August 2, at the same location.

A spokesperson for Great Ormond Street said: “We are very sorry this happened and have spoken to Raffy’s family to apologize. There is no excuse and we can only imagine the anguish this caused.

“The letter, dated for consultation in 2022, was accidentally added to our MyGOSH app due to a failed system update. We use the app to try to facilitate communication with our family members, but in this case we let them down.

“We are investigating what happened and will make any necessary changes as quickly as possible to ensure this does not happen again.

“Our thoughts remain with Raffy’s family during this time.”

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