You can download the report here.
The Spina Bifida & Hydrocephalus Paediatric Advocacy Group rejects how Children’s Health Ireland (CHI) speak about this report.
“Far from the false claims made by CHI at recent Oireachtas health committee and public accounts committee hearings – that these issues have been resolved and all children are now receiving appropriate oversight – they have not.
“We have waited for CHI to hold their hands up and say they were wrong and to inform families. Instead there is a continued withholding of information, claiming this to be a human resources report. The reality is very different.
“Many of the children discussed in this report are now young adults who have not been transitioned appropriately to adult services – kicked out the door, some while in serious medical difficulty.
“Being left without access to urology or orthopaedic reviews has caused irreversible, lifelong complications for some. This is not historic – this is harm that continues to unfold,” the group says in a statement, signed by co-leads Amanda Coughlan and Úna Keightley and published in full below.
CHI’s chief executive Lucy Nugent respects opinions.
Appearing before the Oireachtas public accounts committee yesterday and asked about taoiseach Micheál Martin and tánaiste Simon Harris’s call for an internal CHI report to be published, she said, "I respect their opinion."
She still however refuses to publish the report. This, she says, does not mean CHI doesn’t respect the "great upset" this report – and its non-publication – has caused children and parents.
She says CHI must respect the legal advice it’s received. It says it can’t publish. At The Ditch we respect other things – like the public interest. We think the report should be published.
The report details how CHI has treated patients known as the “Crumlin orphans”. They have “received sub-optimal care” compared to other patients with spina bifida at Temple Street. “The lack of consistent and appropriate management of negative behaviours which appears to have gone unchallenged for a significant period of time has led to a toxic and siloed culture, where many staff feel unsupported and have disengaged from the wider organisation,” reads the report, which also concluded, “The understanding as to how,” these patients, “appear to be in limbo and unable to access (the) care that children in CHI at Temple Street can is extremely vague and far from consistent.”
It includes details of how one consultant delayed operations for patients. “Knowingly placing these patients who require surgery urgently or as soon as is possible on the urology inpatient waiting list,” reads the report, “is far from in the best interests of the child, and one could argue potentially negligent. This represents a significant patient safety issue which needs to be reviewed as a matter of urgency.”
For these delays the consultant was paid €35,800 in public funds.
The working culture at CHI may have put children in danger. “Owing to an apparent lack of collaborative working a pattern of behaviours exist which undoubtedly has the potential to affect patient safety,” it reads.
The report describes this culture as “dysfunctional” and “disruptive”. To illustrate this the report used an example of internal emails whose tone "suggests a complete lack of professionalism by some. Ultimately wasting professional consultants time, negatively impacting relations, and significantly potentially affecting patient care.”
Amanda Coughlan, co-lead of the Paediatric Advocacy Group for children with spina bifida and hydrocephalus, is the parent of one of the children referred to in this report as a “medical orphan“.
“My child is one of the Crumlin orphans highlighted in this report. For years, I have pointed out the failures inflicted on my child and others like him — not just in urology but in orthopaedics too.”
It’s the time the report was published. Download it below.
Issued by the Spina Bifida & Hydrocephalus Paediatric Advocacy Group
Following today’s decision by investigative platform The Ditch to publish The Orphan Report – an internal document from Children’s Health Ireland (CHI) – we, the Spina Bifida & Hydrocephalus Paediatric Advocacy Group, are responding to its findings.
The report reveals that CHI failed to provide safe, structured, and specialist care to children living with spina bifida. It confirms that many were denied appropriate referrals, timely surgeries, and basic oversight. Children were described as “medical orphans,” reflecting the absence of any lead clinician or coordinated pathway for their care. These are not just statistics; they are our children.
On page 95 the report includes the following statement:
“Evidence from the gathered patient information shows that patients in both Temple St and Crumlin have been neglected and have not received the level of care, which would be expected in the modern day in a country with developed healthcare.”
This is a significant statement to have been called out in a report commissioned by Temple Street Children’s Hospital. Yet it appears there is still a lack of clarity about what mitigating actions, if any, have been taken to address this Spina Bifida patient welfare concern.
CHI has since confirmed – including in a public Oireachtas health committee hearing – that affected families were never informed of failures in their children's care, which include potential increased cancer risk and infertility issues. How this can be considered below the threshold for open disclosure is unbelievable – and we do not believe it. These young people and children deserve better. Because families have not been informed of the increased risks arising from delayed treatment, they are being denied the knowledge to access early cancer screening or fertility assessments. This is a continuing harm – not an historic one – and the failure to notify these individuals must be urgently addressed.
While the state focuses on misappropriated funds, it overlooks the critical misappropriation of children’s lives.
The concluding section of The Orphan Report states:
“The lack of clarity, consistency, and transparency regarding management of referrals and waiting list oversight is negatively impacting interpersonal relationships, operational efficacy and significantly, not in the best interest of the child.”
We are of the opinion that little has changed, and this is still the case. There remains the same culture of protecting the institution rather than admitting harm and acting in the best interest of the child. Once again, families are learning about the harm caused to their children not through formal systems of open disclosure, but through an online investigative platform.
It would appear neither the minister for health, the HSE, nor CHI are willing to break from the culture of silence, to publicly acknowledge the findings, the wrongdoings or ensure transparency and accountability. The Ireland of today is very much the Ireland of old – where those in positions of power band together to withhold information, deny neglect, deny harm – and children suffer.
Download the report in full below.
