The mother of a young boy who was removed from a waiting list for scoliosis surgery has rejected the Health Minister's claim that communication with families has improved.
Gillian Sherratt's son Harvey suffers from spina bifida, hydrocephalus and scoliosis.
He has spent the last two years on the urgent list for scoliosis surgery because his spine now has a 110-degree curve and “his rib cage is crushing his right lung”.
His family say he was removed from the waiting list for emergency surgery on the advice of one surgeon.
Gillian Sherratt's son Harvey. Image: Stephen MorrisonThe Health Minister Stephen Donnelly has refused to comment on the case – however he did insist that communication between parents and Children's Health Ireland has improved in recent times.
So things have gone from bad to worse recently for Harvey unfortunately.
While we have been campaigning, while we have all been sharing his story, while we have been watching footage of Harvey struggling to breathe, while we have been watching him screaming in pain, @CHI_Ireland… pic.twitter.com/BFtBAL2b5N— Gillian Sherratt (@GillSherratt23) September 14, 2024
Gillian told Lunchtime Live she "strongly disagrees" with the Health Minister – noting that she still has heard nothing about why Harvey was removed from the list.
"Since I found out at the end of August [about] Harvey being removed from the list, I've sent four emails asking them when was he taken off the list and I have not got an answer to this day," she said.
"I've had incidents where I was talking to David Moore, who's the lead of the [Paediatric Spinal Surgery Management Unit], and I had to send him three emails to even get an acknowledgment.
"Then the email that he sent back didn't answer a single question - so I don't know what that's improved on?"
'Surgery should go ahead'
Ms Sherratt said the decision to remove her son from the waiting list was taken by one surgeon.
"We had three other surgeons that said that Harvey's surgery was needed and should go ahead," she said.
"The one surgeon that didn't think it should go ahead said that Harvey wasn't, in his opinion, fit for surgery around some concerns about Harvey's weight - his breathing issues - and concerns around bone density.
"Both breathing and appetite are directly affected by scoliosis.
"His weight came up, he was linked to the specialists in those areas, and they didn't have any major cause for concern".
'When and why?'
Ms Sherratt said she wants to know the process behind the decision.
"I want to know when and why was the opinion of one [doctor] enough to out-rule the three that said that it needed to go ahead?
They put [Harvey] in front of a surgeon from Great Ormond Street [Hospital] in May who recommended surgery and I don't know what the point of that was if they were then going to kick him off the list anyway.
"I have so many questions".
She added that she would like Minister Donnelly to sit down with the Spina Bifida & Hydrocephalus Paediatric Advocacy Group "because the advocacy group that's on the taskforce don't have children in CHI waiting on these surgeries - they don't see these failings, they're not living through it on a day to day basis".
Minister for Health Stephen Donnelly speaking to media in Dublin, 6-1-23. Image: Leah Farrell / RollingNews.ieSpeaking yesterday, Minister Donnelly said Harvey was taken off the list “based on a clinical decision”.
“It's a matter between the family and the surgeon,” he said.
"It's not a policy issue and it's not about resources - not that we don't need more resources, we do – but in that particular case that's a clinical decision."
Minister Donnelly said he knows the communication at CHI is not perfect – but he insisted it is improving.
"In terms of communications with the families it was very clear to me when I was appointed - and I attended some of the meetings between parents and CHI - the communications were poor," he said.
"I saw parents ask repeatedly for very modest [and] very reasonable changes for how they were being communicated with.
"I'd attend the next meeting a few months later and what they had asked for and what we supported had not been implemented.
"There has been a change - not that it's perfect, we know it's not perfect - there's a lot more communication now.
"We have a ways to go; it is something we're aware of, it is something I do think is getting better".
Listen back here:
