The Phoenix Rising Network

Our affiliate Phoenix Rising Youth Club Enniscorthy - FDYS had someone very special hop on by to see the kids. The club supports children w/additional needs & their siblings. Proud to support the club & delighted for it to have the ongoing support of @FdysWexford as well 🐰🐣💚

Over 11,600 patients with suspected breast cancer not assessed within clinics’ target time last year -✍️ Eilish O'Reagan Of the “urgent” 30,100 patients ­referred last year, 18,443 were seen within 10 days, leaving 11,657 getting delayed appointments. Nationally, just six in 10 of the ­women referred to the breast clinics were assessed within that timeframe. #HealthCrisis #Cancer #Waitinglists #IrelandisBroken independent.ie/irish-news/hea…

Ongoing Scoliosis Scandal Why do we tolerate the cruelty being inflicted on children by CHI? A DISTRAUGHT mother and father have urged Health Minister Jennifer Carroll MacNeill to help save their only son's life - ✍️ Valerie Hanley Michael and Penny Henry's eldest child Mikey has a rare neurological condition as well as scoliosis. And the 17-year-old's spine has become so curved it is almost three times worse than the optimum to benefit from surgery. The best outcomes are if the spine has not curved beyond 45 degrees. But the curvature of the Mayo teenager's spine has already reached 130 degrees. Waiting Lists According to the most recent figures, the total number of children awaiting surgery has not changed with 241 in February 2025, and exactly the same 12 months later. #CHI #MikeyHenry #Scoliosis #BackUs #PublicInquiryCHi @IrishMailSunday

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

This Mother’s Day I can’t help but reflect on Mother’s Day 2017. I had just done my first interview about Harvey and was helping to raise funds for Temple Street Children’s Hospital. Harvey was only 14 months old at this point and the future for him looked bright. The cracks in his care were still hidden, and shortly after doing this interview is when I found out how severe his scoliosis was. In the article I say “my hopes for him are like any parent, as long as he’s happy in the quality of his life, we’re happy”, but he wasn’t afforded the quality of life or care he should have got. I finish with “Harvey has shown me what true strength is and taught me how to stand up and fight, he has shown me what it is to have unconditional love, he is my hero.” And that rings true today. Sending Mother’s Day love to all the fierce mothers who are fighting every day for their kids to get the life they deserve. I hope one day we don’t have to fight any more 💕

Today we're celebrating the mothers in our community. Those navigating systems, learning rights by night. Those who've lost a child, yet their love endures. Those mothers fighting for the next generation. Your love is advocacy. We see you. We support you. We celebrate you.

This week we made a formal submission to the Minister of Education regarding #SNA Allocations & #UNCRPD Compliance. Please support your local SNAs at any of the area protests 📣

@joanne_sansome @CalebsCauseNI @castleDD @Chris_McClem @Actn4ChildrenNI @MatthewTaylorNI @MarkYoung23 @Donate4Daithi @Foodstock__ @KylaHollywood @gymforthesoul @AndyDRC @EleshaJD @JudgeWren @spankychair @SJA_McC @Stephen63224725 @GillSherratt23 Would love that 💜

@PhoenixRises_24 @CalebsCauseNI @castleDD @Chris_McClem @Actn4ChildrenNI @MatthewTaylorNI @MarkYoung23 @Donate4Daithi @Foodstock__ @KylaHollywood @gymforthesoul @AndyDRC @EleshaJD @JudgeWren @spankychair @SJA_McC @Stephen63224725 @GillSherratt23 And you J 💜 I have to get down to meet you face to face this year! 🤞

#FF @CalebsCauseNI @castleDD @Chris_McClem @Actn4ChildrenNI @PhoenixRises_24 @MatthewTayLorNI @MarkYoung23 @Donate4Daithi @Foodstock__ @KylaHollywood @gymforthesoul @andyDRC @EleshaJD @JudgeWren @spankychair @SJA_McC @Stephen63224725 @GillSherratt23 🫶

Delighted to announce Dr. Amanda O'Sullivan as our new Grants & Research Officer. She will, without a doubt, be an incredible asset to our Board. Welcome to the team, Mandy! 💜

Most Carers live with the disabled person they care for, & both risk losing their vital payments & medical cards if Carers try taking up work to pay for the additional cost of disability.

VISITING RESTRICTIONS- Below is based on a person with dementia. You can examine the HSE guidelines as it applies to various conditions/ disabilities. The HSE guidelines are very specific about the difference between a "social visitor" and a "partner in care." Even when a hospital has strict visiting restrictions (due to infection control or staffing), they must provide exemptions for vulnerable patients. Here are some specific HSE frameworks you can cite to back up your case: 1. The "Compassionate Grounds" Requirement The HSE National Policy on Visiting states that hospitals must always have a process for "compassionate visiting." Dementia is specifically recognized as a condition where isolation causes clinical harm. The Specifics: Guidelines state that for patients with dementia, cognitive impairment, or mental health issues, the absence of a family member can cause "significant distress." In these cases, visiting should not just be "allowed" but actively facilitated to prevent delirium. 2. Designation as a "Partner in Care" The HSE differentiates between a visitor and a Partner in Care. The Specifics: A Partner in Care is defined as someone who provides essential support to the patient that the hospital cannot—such as assisting with communication, feeding, and emotional orientation. 3. Prevention of Delirium HSE clinical guidelines for dementia care in acute hospitals emphasize the "Dementia Care Bundle." This policy explicitly encourages involving family and carers "as much as possible." It recognizes that family members are the "experts" on the patient’s history and non-verbal cues. Your argument is that refusing access increases the risk of Acute Delirium, which is a medical emergency. The hospital has a "duty of care" to prevent avoidable harm; isolating a dementia patient is a known trigger for delirium and physical decline. 4. Assisted Decision-Making (Capacity) Act This is an Irish law that was fully commenced in 2023. It requires healthcare providers to support a person's "will and preference." If the patient’s preference is to have their family member present for support, the hospital must take "all practical steps" to facilitate that. (Remind the hospital that under this Act, the patient has a right to be supported in their communication and decision-making by a person of their choosing) If They Still Say No: If the Ward Manager or Clinical Nurse Manager refuses, you have the right to escalate immediately . Request a "Formal Review": Ask for a written reason why the "Compassionate Grounds" exemption is being denied. Contact PALS: Every Irish hospital has a Patient Advice and Liaison Service (PALS). Their job is to mediate these exact disputes. Contact Social worker Contact HIQA. Each hospital is managed by its own Regional Health Area. However, they are all governed by the same HSE National Clinical Pathways and Quality Standards. 1. The "Essential Care" Guideline (Dementia Care Bundle) The HSE's official pathway for dementia in acute hospitals explicitly states that family involvement is a clinical necessity, not a luxury. The guideline mandates staff to "Involve patient and family in care as much as possible/appropriate." The Clinical Goal must be to prevent Delirium, which is classified as a medical emergency in the HSE. hse.ie/eng/about/who/… hse.ie/eng/dementia-p… Draft. #CareChampions #carepartner #HumanRightsDoNotGrowOld

16 months now since we found out Harvey had been removed from the scoliosis surgery list, and 5 months now since he died and yet we *still* don’t have any answers as to who removed him, why, or when. It has been 4 months since the whistleblower brought their protected disclosure which alleges Harvey was wrongly labelled as a palliative patient and yet we still haven’t been afforded any clarity from @CHI_Ireland The ‘spinal audit’ was due in November and now it’s isn’t expected until at least February so in the mean time, who is making sure no other children have been wrongly categorised? @CarrollJennifer Why does there appear to be zero sense of urgency from CHI or government for the children left to suffer? Each passing day allows further avoidable suffering, pain, and adds to the complexity and risk for the surgery needed. Time is of the essence. When government say ‘they’re doing all they can’ they’re wrong. To @FineGael and @fiannafailparty let your 2026 New Year’s resolution be to stop failing our children. #JusticeForHarvey #NoChildWaiting

@joanne_sansome @CalebsCauseNI @castleDD @SJA_McC @spankychair @PhysicalImpair @Foodstock__ @Donate4Daithi @Chris_McClem @CCampbell162 @elly_chapple @MarkYoung23 @johnpringdns @gymforthesoul @PeterMcAuley9 @PaulDoherty___ @DannyDonnelly1 @ValHopeHanna1 @JustIncludeUK Happy New Year Joanne xx

#FF @CalebsCauseNI @castleDD @SJA_McC @spankychair @PhysicalImpair @PhoenixRises_24 @Foodstock__ @Donate4Daithi @Chris_McClem @CCampbell162 @elly_chapple @MarkYoung23 @johnpringdns @gymforthesoul @PeterMcAuley9 @PaulDoherty___ @DannyDonnelly1 @ValHopeHanna1 @JustIncludeUK

This holiday season, we’re reminded of the power of rising together. Even in challenging times, hope is a spark we can all carry. Let’s nurture it, support one another, and step into the new year knowing we are #StrongerTogether. Wishing you peace & renewal. #SparkChange

Our affiliate youth club Phoenix Rising Youth Club Enniscorthy had its Christmas Party today & guess who showed up? Thankful for the support of @FdysWexford, our volunteers & our local community for helping us create a truly inclusive, magical evening for our kids 🎄🍭💜✨️🍬

This is the number of patients waiting to be admitted to #UHL who are left on trolleys today. No privacy. No dignity. No adequate treatment. This is not healthcare. This is not good enough. @CarrollJennifer @MichealMartinTD @BernardGloster @HSELive @roinnslainte @SimonHarrisTD

This five-hour wait for an 80-year-old with a suspected fractured hip is an example of systemic failure and inhumanity. The extreme delay increases the risk of harm, leading to unnecessary pain, potential hypothermia, and severe complications. This transforms a critical medical emergency into a prolonged, distressing ordeal. The frequency of these incidents demands urgent action from the Minister to fix these broken healthcare systems. #HumanRightsDoNotGrowOld #NAS #crisis #Carechampionsireland limerickleader.ie/news/health/19…

#FF @MarkYoung23 @WAVETrauma @Actn4ChildrenNI @CalebsCauseNI @castleDD @gymforthesoul @Donate4Daithi @PaulDoherty___ @SJA_McC @jonjalex @PhoenixRises_24 @johnpringdns

We would be very interested to hear about how financial increases on assistive technology is going to be good for the people's health. #StructuralViolence #HumanRights #IndependentLiving #Institutionalisation #FairDeal #UNCRPD #Audit