michelle long

My son Tommy on his communion day yesterday. A picture of health after 7 spinal surgeries. We have world class surgeons and when our kids can access timely health care outcomes can be fantastic.@scolionetwork

A quote today from @SimonHarrisTD on Harvey, "And when Harvey's case was brought to my attention, I immediately contacted the Department of Health and CHI and sought additional clinical consultations, which I believe did take place. I was always of the view that it was very important that any medical interventions were, of course, clinician-led." he seems to forget that I emailed him a month after that Dáil date and I laid it all on the table. Don’t pretend you didn’t know Simon. Don’t you dare dishonour Harvey by pretending you did everything you could. #JusticeForHarvey #ResignHarris

Consistently ourselves & @scolionetwork have advised that children are not prioritised on clinical need This "orphan" report categorically proves this It is true of scoliosis orthopaedic & urology services #backus in our call for a statutory inquiry into @CHI_Ireland

‘There is a continued withholding of information, claiming this to be a human resources report. The reality is very different,’ says one patients’ group about this report. Children’s Health Ireland won’t publish it. Here it is in full. ontheditch.com/heres-the-repo…

@caulmick @ST__Ireland @CHI_Ireland

If Jennifer Carroll MacNeill truly listened to parents, she’d call for an independent statutory inquiry. @CarrollJennifer If a wait list audit is necessary, then so is a medical device audit. @TheHPRA Families have reported serious concerns at @CHI_Ireland , including: – MAGEC rods left in situ long-term – Delays in communicating safety notices – Off-label device use (e.g. gastrostomy buttons) – Reports of unnecessary hip surgeries – VBT performed without HIPE coding (~10 cases per CHI) – Removal of spine register without family consultation Children and families deserve transparency, oversight, and trust. #PatientSafety #Scoliosis @BernardGloster we have raised this issues continuously with you. What have you done ? @SBH_PAG #BackUs @HSELive

🚨 “Failure to provide procedures went against best practice procedures & could result in infertility or cancer, the inquiry found” We call on @CarrollJennifer to instruct the CHI Board to publish a redacted report in the public interest @scolionetwork #MedicalOrphans #backus

I need to speak to people inside @CHI_Ireland who are aware of its financial practices, management of waiting lists and HR issues. Please contact me in confidence. Reach me on Signal +353 89 975 3779 or JohnMooneyST@protonmail.com. Don't use a work comms. #PleaseRT #CHI

A full audit of the governance and practices of Children’s Health Ireland has been ordered by Jennifer Carroll MacNeill after an internal report found that a consultant financially exploited the state’s waiting list management system. -John Mooney “The audit aims to assess governance and equity in access to care within CHI, especially regarding the balance between public and private patient management.” It will involve officials from the HSE’s finance, HR and access/integration departments. #CHI #HSE #HowIrelandWorks thetimes.com/article/d7e640…

Three years ago today, our son turned 13 & was admitted to have his MAGEC rods removed/replaced. Today, he turns 16. Once again on a waiting list for #scoliosis surgery. Delays haven’t just defined his childhood they’ve defined his outcomes. It should never be this way. #EOS

4 mums that have given up years of their lives campaigning for 1000s of Children with Scoliosis, 100s of children with Spina Bifida and now 1000s of children that had hip surgery. People forget that those mums have their own battles to face. Heroes, is too small a word.

We’ve another big one on @CHI_Ireland tomorrow. CHI unit unaware how many seriously ill ‘orphans’ in its system thetimes.com/article/7109a7…

The pace of events involving Children's Health Ireland is truly astonishing. Given the run of events, it is difficult to see how CHI, in its current structure, can survive, writes Health Correspondent Fergal Bowers rte.ie/news/analysis-…

How many more damning reports are sitting unpublished? Children missed critical treatment windows while internal systems failed them. Families deserve transparency and accountability. Publish the full report now. @CarrollJennifer @BernardGloster Thank you @JohnMooneyIRL. #RightToKnow #Scoliosis #backus

Young adults aged out of @CHI_Ireland and were “transferred” to Tallaght — then left to rot on waiting lists for years. ⏳ ❌ No care. No follow-up. No plan. Just forgotten. We’ve been contacted by multiple young adults who waited YEARS — only to receive a cold letter saying: “Service not available. You’re now being transferred to the Mater.” An utter shambles. A cruel cycle of delays and abandonment. And all of it happened under the watch of Lucy Nugent — then CEO of TUH, now CEO of CHI. @BernardGloster — how was this ever allowed? @SBH_PAG @davidcullinane @PadraigRice @RuthCoppingerSP @ivanabacik @TomClonan

👂 Listened to the CHI statements yesterday. 🏥 The “transition of care” to the Mater Hospital was presented as a new and transformative action. @CarrollJennifer ❌ But this was marked complete in the 2018 Scoliosis Action Plan. This is exactly why families have zero faith in @CHI_Ireland to implement recommendations. ✅ It’s just more tick-boxing — not meaningful change. 👀 Note - action 2 marked 100% complete. What lies we were fed! What money was wasted printing off the lies! @CeoHardiman @IkeOkafor16 @BernardGloster @HIQA @davidcullinane @PadraigRice @RuthCoppingerSP @ivanabacik

Reflecting on the statements on @CHI_Ireland yesterday - this isn’t just about delays or poor communication as highlighted by @CarrollJennifer. @HIQA found poor governance, poor oversight, and confirmed that children were not protected from harm. The most urgent and dangerous issue is the failure in medical device regulation (MDR)—exposed in the recent Spring scandal, the emerging hip scandal, and ongoing concerns about off-label device use. Children are being exposed to risk without proper oversight or consent. @TheHPRA HIQA has already flagged risks. Yet there’s no transparency, no accountability, and no public assurance of safety. CEO CHI Lucy Nugent must now show leadership. The CHI board has been derelict in its duties and must be stood down. This happened under your watch, @BernardGloster - issues re VBT coding and communication re FSN Magec rods clearly communicated to you. @HSELive @CeoHardiman @IkeOkafor16 @npsoIRL @SBH_PAG #BackUs @davidcullinane @PadraigRice @ivanabacik @RuthCoppingerSP

Yesterday we called for action from the Minister for Health on the catastrophic failures that continue to harm children with scoliosis/spina bifida. @CarrollJennifer We presented four urgent asks: • Stand down the Board of CHI. • Expedite and deliver all outstanding reports. • Commission a full independent investigation. • Fund access to independent clinical opinions outside CHI. We also raised a grave new concern — the Minister has 14 days to respond. @CHI_Ireland @IkeOkafor16 @BernardGloster @npsoIRL lucynugent @SBH_PAG @OCO_ireland #BackUs

Parents of children with scoliosis and spina bifida give Health Minister Jennifer Carroll MacNeill two weeks to respond to demands | Irish Independent ⁦@SBH_PAG⁩ ⁦@UnaKeightley⁩ ⁦@mandacoughlan⁩ ⁦@chelleylong⁩ ⁦@ClarCahill⁩ independent.ie/irish-news/hea…

@ChapCleere the time was given for statements on the utter failings of CHI not to celebrate healthy children in sport. My son couldn't play sport as his lungs were left to be crushed waiting and waiting for surgeries. @scolionetwork @sp