The Phoenix Rising Network

I don’t think anyone talks about the parental guilt that happens with scoliosis. I have been thinking a lot about this for the last while and I realise that while we, Mammies and Daddies, Foster-parents and Guardians alike, are not being supported like we should. I know our kids get very little support post-surgery but our involvement isn’t even discussed. I would have thought that ensuring that the person/people who have to help these children heal and recover mentally, would be paramount. These fragile children are handed to even more fragile carer givers. There is no-where for any of us to talk about our own trauma in this process. I can only speak from my own opinion and experience but, given what my child went and goes through, I don’t feel like I ‘have the right’ to have the ‘poor me’s’ I know that our personal situation for our child (hypermobile Ehlers Danlos Syndrome, unreported 13° flexible curve by Rheumatology, missed opportunities for us to be indirectly informed of her scoliosis if hospital administrative protocols had of been followed – would have enabled us to bring her for bracing etc) is not the norm of what many experience when the scoliosis care pathway is something they have to start. However, I thought about so many other ways that parents end up on the scoliosis journey and I can see, in equal measure, how parental guilt may creep in….or drown us. From early onset, congenital, syndromic, adolescent idiopathic scoliosis or scoliosis secondary to another medical/orthopaedic issue, I am sure that many of the things that I have been thinking might resonate with others. Was it something I missed? Why didn’t I argue more that I was concerned about her spine when they told me it was just bad posture and discharged her (despite an Xray saying different)? Was it something I did? Or didn’t do? Was that chair that she used for her schoolwork and chilling in her sensory corner not supportive enough? Was it the trampoline she played on that caused more rapid progression? Did I look at every option? Even though I asked them, should I have brought her somewhere else for assessment? Should I have demanded that the surgeon put on an interim brace at 50° to stop her getting worse before surgery (70° with rib hump and lung restriction by the time she went in)? I asked. They refused as it wasn’t normally done……but it is done up to 60° (and correctable) in some parts of the world. That’s the one that stops me sleeping! She is fused from T4 to L4. She is 13 in 6 days time. What issues are going to happen above and below the fusion as she gets older? Ultimately……. Did I do everything that I possibly could? I am fighting for corrections in CHI and HSEs processes because if only one other child can get much earlier and less invasive surgery, or avoid surgery, avoid possible complications then I can ease that guilt I suppose. How are other parents handling this trauma? Or, like me, are you just plodding along and hoping that it will get easier…like a form of grief for the loss of a life that could have been free of scoliosis (even when surgery is a positive outcome), or the implications of a more invasive or complicated scoliosis correction surgery? @ChildRightsIRL @PhoenixRises_24 @SBH_PAG @ScolioIreland @scolionetwork @Stephen63224725 @GillSherratt23 @CHI_Ireland @TempleStreetHos @OCO_ireland @rareireland @MairinNolaczy1 @mandacoughlan @Horlickstothat @UnaKeightley @LalorMaher33771

As a family we decided to ensure that our complaint against failed processes in CHI were fully highlighted, investigated and acted upon. We couldn't change Analla's requirement for surgery at that point...but we wanted to be sure others weren't missed and that CHI were at least following processes. We made our complaint that our daughter's mild scoliosis was not reported to us nor her GP, via the Patient Feedback and Support Services (PFSS) on March 29th 2024. As far as the CHI Incident Management Team are concerned....they are done with the complaint. In summary they admitted that...yeah, they failed to tell us about her curve....but hey....they asked the doctor who failed her and "they said" it wouldn't have changed anything...she still would have needed surgery. Her brother is what is called in legal terms as "biologically plausible evidence" that a 17⁰ curve can be straightened when we know about it early in hEDS patients. The fact she was discharged by CHI physio 3 months before being listed for surgery for severe Scoliosis, as having nothing wrong with her spine...wasn't investigated by the Incident Management Team of CHI. The fact she was on a list for hip and knee pain by the Department of Orthopaedics...and not her spine...wasn't investigated by the Incident Management Team of CHI. The fact they defend asking the failing doctor themselves to carry out a preliminary assessment of the impact of THEIR failings on our daughter... not an issue according to the Incident Management Team and CEO of CHI. So......I will ask you all for your opinion...... below are images of comments from the CEO or PFSS or the Incident Management Team with regards to issues I raised. Image 1: Our suggestion that a paragraph be included in the Terms of Reference for the Investigation for a look back review to be done.....and the response from the CEO that no other child/parent has EVER not been told of a mild curve by the Dept of Rheumatology...without even investigating it. We were anecdotally told of at least 3 children. Image 2: That homeschooling your children is a yellow flag to CHI. Homeschooling is not inherently a "yellow flag" (a psychosocial factor indicating increased risk of, or barriers to, recovery) within the biopsychosocial model. However, it can be considered a yellow flag depending on the context, particularly if it is associated with social isolation, lack of monitoring, or used to avoid mandatory school social services. Conclusion:It is best viewed as a context-dependent factor. A well-resourced, socially active homeschooling family would likely not be flagged, whereas a family using it to isolate a child or avoid social interaction would be. Hhhmmm so which was it CHI? because we are TUSLA registered, annually reviewed and the reports are GLOWING in terms of socialisation, education, physical engagement and supports. and Image 3. The Outpatient department... in response to a query relating to a Serious Incident Management investigation...were not aware of any protocols in place in CHI for basic patient-consultant care communication pathways.... 🤯. These SOPs should be their bible. These protocols are what MAKE a hospital NTPF compliant. So CHI think they've done their bit. Ombudsman has not yielded anything different. HSE regional officer has refused to engage and said 'CHI provided you with a comprehensive report of their investigations' So where do you go legally to just get accountability in an investigation process? Where do administrative failings fall under? Organisational ineptitude? @CMHaughey @HSELive @roinnslainte @DrMartinDaly @MaryLouMcDonald @CarrollJennifer @WhitmoreJen @PAIreland @PhoenixRises_24 @UnaKeightley