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The Scoliosis Advocacy Network #BackUs Profile
The Scoliosis Advocacy Network #BackUs

@scolionetwork

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Founded by @chelleylong @clarcahill - Access to quality & timely #scoliosis assessments & treatments is a children’s rights issue.

Kilkenny, Ireland
https://t.co/UgQSdkOdrx
Joined December 2015
Don't wanna be here? Send us removal request.
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
6 years
A gentle reminder - “by the end of this year (2017) no child will wait longer for a scoliosis procedure than 4 months”. Aug 2018 and children continue to languish on lists. Do you still feel ashamed @SimonHarrisTD ?
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
4 months
We need more politicians like @catherinegalway “You will not be having my support” “Having no sense whatever what a republic means & what public services truly mean & what equality truly means” @SimonHarrisTD you made a promise to our children that you never kept @SBH_PAG
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
2 years
Michael Barry, 10, was diagnosed with scoliosis at the age of four. Despite being diagnosed with #scoliosis six years ago, Michael underwent his first x-ray for the condition in October, 2022. @OCO_ireland @DonnellyStephen @AnneRabbitte @HSELive
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Cork boy waiting six years after diagnosis for first x-ray 

The Blarney youngster, who uses a wheelchair, also has intellectual disabilities.

www.echolive.ie
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
1 month
We met an Taoiseach @LeoVaradkar in Sep '23 where we expressed no confidence in @DonnellyStephen . 9 months later, the situation is even more dire. We reissue our lack of confidence in Minister Donnelly. He has proved time and again incapable and incompetent in safeguarding
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
3 months
Liam is 5 weeks + 1day in hospital today. What are the exact barriers to accessing care for this boy ? @DonnellyStephen Why has he yet to be seen by a spinal team ? @SimonHarrisTD Why is there no urgency on part of @CHI_Ireland ? Why no communication to @pamdennehy ?
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@pamdennehy
Pamela Dennehy
@pamdennehy
3 months
@PrettPatricia @FCarolMH @SimonHarrisTD @DonnellyStephen @scolionetwork @SRS_org @ScoliosisOnline @scoliosisdoctor @HSELive @IrishCountryLiv @McNiffecent @mulvanypeopleb1 @RareDiseases @SBH_PAG 5 weeks and 1 day tomorrow 💔
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
10 days
281 children are currently waiting for #scoliosis surgery. Despite some parents signing outsourcing forms 5 months ago, there has been no movement. A spinal taskforce spokesperson stated "I wouldn’t know that" when asked for a timeframe and mentioned plans for 8 children who
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
2 months
Can our politicians please stop and think what the past months have looked like for Liam and his mother. @pamdennehy Does anyone actually care anymore what happens to our beautiful children ? This is heartbreaking 💔 #scoliosis @SBH_PAG @SimonHarrisTD @BernardGloster
@pamdennehy
Pamela Dennehy
@pamdennehy
2 months
@scolionetwork @SimonHarrisTD @SBH_PAG @CeoHardiman @IkeOkafor16 @OCO_ireland @LeoVaradkar @DonnellyStephen @TomClonan @RoisinShortall @catherinegalway @MaryLouMcDonald Still no surgery 😪💔⚕️still no change ... still no accountability for allowing this to happen and allowing a child to become so unwell as a result of this negligence and no time to squeeze Liam in for surgery despite all of their failures in his care @SimonHarrisTD
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
11 days
Like other parents and their children, Daisy and her family had spent years waiting for spinal surgery.  @SimonHarrisTD #scoliosis Lynn explained Daisy’s spinal curvature was at 62% when she passed away. @CHI_Ireland @OCO_ireland “For the last year, Daisy had horrific bowel
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
5 months
Misinformation from @SimonHarrisTD There is no task-force in place. Surely, at the least we should expect our government to speak the truth. Harris should apologise to children waiting on life changing surgery. #scoliosis @SBH_PAG @LeoVaradkar @FineGael @DonnellyStephen
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
2 months
Elections are approaching, and it's clear @SimonHarrisTD has found time for everyone across the country … except for the parents and children living with #scoliosis . This neglect is unacceptable. Taoiseach, you must address the needs of our families now. Make time for those
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
3 months
When @FineGael @fiannafailparty canvassers come to your door this weekend tell them how they have failed to ensure safe & timely access to #scoliosis care for children over the past decade. @SBH_PAG @LeoVaradkar failed @SimonHarrisTD failed. @DonnellyStephen ongoing failure
@pamdennehy
Pamela Dennehy
@pamdennehy
3 months
How long more will you allow this continue @SimonHarrisTD how many more hours should Liam suffer before accessing the 8 to 10 hours it would take to relieve him of enduring such suffering affecting each and every organ now @DonnellyStephen how much more deterioration do ye want
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
7 days
Written by Deirdre Taffe - fyi @BernardGloster I returned some equipment to the HSE building in Ardcavan today and I was shocked to see all of this equipment just left out in the elements. It looks like it’s left to rot but you can clearly see most of it is almost brand new. I
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
2 years
Total of 268 children waiting for scoliosis surgery across CHI Ireland compared to 187 for the same period last year. 19m allocated this year to children’s ortho services - where has the money gone ? @DonnellyStephen @paulreiddublin @CeoHardiman @OCO_ireland @MaryLouMcDonald
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
2 months
Remember the children living with #scoliosis when you cast your vote in the local elections today. Over the past years, our government have failed our children greatly. This neglect is unacceptable. This is a children’s rights issue.
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
3 months
Why does @SimonHarrisTD consistently like to portray he is speaking with confidence and authority about the experiences of children who live with #scoliosis without ever actually engaging in direct conversation with them or their parents ? Yesterday, he dismissed @pamdennehy &
@pamdennehy
Pamela Dennehy
@pamdennehy
3 months
@caulmick @MaryLouMcDonald Either the Taoiseach is being misled by Crumlin or Taoiseach is blatantly lying Liam had no orthopaedic assessment in April He was last seen by his consultant on March 19th The date given is administrative and is not based on the level of deterioration Liam has had since then !
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
6 months
Of note this eve - not 1 person in government came to meet & speak with families who travelled from all over Ireland. This is a really poor reflection on @FineGael & @fiannafailparty & @greenparty_ie Shame on all. No want to listen & understand. @LeoVaradkar @MichealMartinTD
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
3 years
Four years ago, an Irish doctor was quoted in the Dáil as saying that foreign specialists were coming here to study these kids because it is so rare elsewhere to see a child whose scoliosis has been allowed to get so bad. @DonnellyStephen @paulreiddublin
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Fintan O’Toole: What is this country if it allows torment of children with scoliosis?

Children are still in agony, and forced to display their suffering on the airwaves

www.irishtimes.com
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
8 months
This week we saw a child with a 138° curve in the media. No date for surgery. Window of opportunity closing while they wait. Everyone in CHI/HSE aware of this case. Parents crying out for intervention. @DonnellyStephen you have done nothing since sep to improve access.
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
3 months
Taoiseach @SimonHarrisTD must correct the Dáil record. This is misleading & dismissive of a parent/child lived experience. Liam did not see Ortho Cons in April. Liam was last seen in person by his consultant March 19th 2024. He has deteriorated greatly. 5+ wks in hosp.
@pamdennehy
Pamela Dennehy
@pamdennehy
3 months
How long more will you allow this continue @SimonHarrisTD how many more hours should Liam suffer before accessing the 8 to 10 hours it would take to relieve him of enduring such suffering affecting each and every organ now @DonnellyStephen how much more deterioration do ye want
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@scolionetwork
10 days
19m allocated to help children living with scoliosis and spina bifida access care is still unaccounted for. @SBH_PAG What is causing the delay? When will this audit be complete? @DonnellyStephen @BernardGloster @CHI_Ireland @SimonHarrisTD #BackUs
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
3 months
This is most worrying. Liam is over 4 weeks in hospital, 1 week+ under the care of @CHI_Ireland His #scoliosis has got worse since his last review/pre ops according to mum. @DonnellyStephen safe care is ongoing review. Where is spinal team @SimonHarrisTD ? #patientsafety
@pamdennehy
Pamela Dennehy
@pamdennehy
3 months
No spinal review No information from Crumlin No call back No communication bar a letter acknowledging receipt and the usual. I'll pass it on No contact from spinal nurses/Dr's despite asking Date issued for surgery is elective and not urgent (they knew he was urgent in Dec 23
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
4 months
His knees are swollen, he actually has bursitis (inflammation) of the knees, and it’s all because of his spine. Noah’s Cobb angle – the length of the curve on his spine – has grown towards 100 @DonnellyStephen @SimonHarrisTD @CeoHardiman @BernardGloster #backus
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
10 days
A gentle reminder - @SimonHarrisTD @DonnellyStephen #scoliosis
@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
6 years
A gentle reminder - “by the end of this year (2017) no child will wait longer for a scoliosis procedure than 4 months”. Aug 2018 and children continue to languish on lists. Do you still feel ashamed @SimonHarrisTD ?
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@scolionetwork
1 month
As we come to the end of #ScoliosisAwarenessMonth we have - ❗️A minister who is in hiding & who has had 30 days to show public support for #children who live with #scoliosis . ❗️A child having to set up go a fund me for treatment in UK. @BernardGloster @HSELive ❗️A CHI Board
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
10 months
We want a full Statutory Inquiry into @CHI_Ireland to ascertain the truth. A review is not enough. There are too many untruths and inconsistencies. We need to know what happened to our children. @SBH_PAG @UnaKeightley @chelleylong @ac2301 @ClarCahill #BackUs @HSELive
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
10 months
Parents do not share the hard stories. The failures. The infections. The reduced outcomes. They sit with it … afraid to upset other parents. Over the past 2 weeks we have had an avalanche of contact from parents. Parents will not stay silent anymore. @DonnellyStephen
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@scolionetwork
1 year
I would ask Simon Harris, did he ever had to wake up in the middle of the night to go and check if his child was still able to breathe? #scoliosis @SimonHarrisTD @DonnellyStephen @OCO_ireland @CeoHardiman @CHI_Ireland #ivyreport
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‘No child deserves to go through what I did. It was hell’ – Woman tells of five-year wait for...

A woman says her health has been ruined because she was forced to wait years before finally getting the urgent surgery she needed despite government promis...

www.independent.ie
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
6 months
“his son’s pain is now so bad that “he bursts out into tears”. “Harvey’s mobility went from being a very good wheelchair user, to that he does not want to push himself around any more. He is deteriorating at a rapid pace.” ⁦ @DonnellyStephen ⁩
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Father tells how son (8) on scoliosis waiting list is suffering pain so bad that ‘he bursts out...

Children under the care of Mr Connor Green, who went on leave last September after Children’s Health Ireland (CHI) referred him to the Irish Medical Council, are still on waiting lists

www.irishtimes.com
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
3 years
Not one mention of the thousands of people who can’t access care due to a lack of capacity in our health service. @DonnellyStephen speaks of the entertainment industry being able to breath once again. Perhaps he should start focusing on his health Portfolio. #rtept @RTE_PrimeTime
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
4 months
@SimonHarrisTD Hello From the over 4,000 children waiting on a 1st assessment with an orthopaedic consultant in @CHI_Ireland . These are the children you made a promise to - that no child would wait >4mths for #scoliosis care. Some children cannot have surgery now as they are too sick.
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@scolionetwork
2 months
. @CHI_Ireland , fully aware of the consequences of allowing children to deteriorate on #scoliosis wait lists. ‼️ @SimonHarrisTD , we are still waiting for our meeting date.‼️ Your lack of urgency and willingness to listen is unacceptable. The President and the Ombudsman should
@VirginMediaNews
Virgin Media News
@VirginMediaNews
2 months
A mother from Kerry has been highlighting the ordeal her 13 year-old son has been through while waiting on urgent scoliosis surgery. Pamela and Liam Dennehy have been forced to stay in Crumlin hospital for the last nine weeks due to his severe curvature.
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@scolionetwork
4 months
Listening to @SimonHarrisTD it’s very clear that he is not the one to bring change. Absolutely nothing to add only rehashing his excuses on his failed promises #scoliosis All the while children are in hospital because they can’t breath properly. @SBH_PAG @TodaywithClaire
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
6 months
@DonnellyStephen @TomClonan You are presiding over a ministry where children loose function due to delays in access to care. You have no care for the children you are failing. More worried about how you are perceived publicly. 313 children waiting on a spinal surgery. @CeoHardiman @BernardGloster
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@scolionetwork
2 years
Health Department will not reach surgery targets for children with spinal problems 266 children currently waiting on a #scoliosis surgery 23 children on suspended wait lists. Some waiting 36-48 months. Independent clinical review of services needed.
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Health Department will not reach surgery targets for children with spinal problems

In September, there were 214 children waiting for surgery to treat scoliosis alone in Irish hospitals 

www.irishexaminer.com
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
5 months
Sep “23 we met with @LeoVaradkar Since then nothing is in place for children #scoliosis #spinabifida No Taskforce No 2nd opinions No support coordinators No outsourcing No insourcing No surgery for 1 cohort. There is no urgency. Children are left to deteriorate.
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
8 months
35 children are waiting over 12months for a spinal fusion in CHI TS & Crumlin. 2 children on suspended lists in Temple St 36-48months. Total of 312 waiting for a spinal surgery in CHI & Cappagh. @LeoVaradkar @DonnellyStephen @CeoHardiman @IkeOkafor16 @BernardGloster
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
6 years
Consultants and nurses should not be on extended Christmas holidays - Taoiseach. ⁦ @campaignforleo ⁩ How about taking some time to praise the very people who will hold the HSE together over the Christmas period ? Some working for 50% less pay ...
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Consultants and nurses should not be on extended Christmas holidays - Taoiseach

Varadkar says HSE winter plans have not worked for years because of shut down

www.irishtimes.com
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
10 months
Let’s not forget all the promises that @CHI_Ireland @HSELive @FineGael @FineFail have been made to our children. Today we think of all the really brave kids who shared their #scoliosis stories public. Adam spoke of his dreadful wait for care in CHI Crumlin. @oconnellbrian
@RTERadio1
RTÉ Radio 1
@RTERadio1
3 years
"I feel like I'm at the bottom of the barrel. I'm crying myself to sleep." 💔 Adam Terry is 10 years old and has been waiting for over 4 years for urgent scoliosis surgery. @oconnellbrian spoke to him & his Mum about the pain he's in with no date set for surgery @TodaywithClaire
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
3 months
“It is CHI policy to treat children firstly on the basis of clinical priority and secondly on the basis of length of wait.” - David Moore How can CHI implement such a policy when children are not reviewed when they clinically deteriorate ? Today is
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‘Urgent should mean urgent’ says Kerry mother with child waiting for spinal surgery

Scoliosis sufferer Liam, 13, is one of several children facing long wait times

www.irishexaminer.com
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
10 months
The High Court has directed the Chief Executive of Children's Health Ireland to appear before it tomorrow to explain why it has delayed releasing the medical records of a child caught up in the spinal surgery controversy. @MalcomsonLaw @SBH_PAG
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CHI chief directed before court over delayed records

The High Court has directed the Chief Executive of Children's Health Ireland to appear before it tomorrow to explain why it has delayed releasing the medical records of a child caught up in the...

www.rte.ie
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
3 years
Ava Cahill speaking on @rtenews is just heartbreaking. Access to essential and life changing ortho surgery is a children’s rights issue Drs state very clearly that children suffer harm due to no access to care @CappaghKids Yet no urgency in bringing change. @DonnellyStephen
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@scolionetwork
5 months
There is no Taskforce There is no spinal unit There are no outsourcing/insourcing agreements in place There has been no surgery for 1 cohort of children in over a year @CHI_Ireland are gravely derelict in their duty of care @DonnellyStephen has no control of his brief
@caulmick
Mick Caul
@caulmick
5 months
Leaders' Questions - February 28th, 2024 Simon & Stephen's commitment on #scoliosis waiting times - @PearseDoherty Missed Climate Targets - @HollyCairnsTD State of the Art Campus in South East @VeronaMurphyInd Medical Negligence Claims - broken health system - Carol Nolan
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8 days
📢 281 children on spinal surgery wait list as per @CHI_Ireland . ❌Yet, only 221 children are listed as waiting for surgery as per official NTPF report. 🚩A difference of 60 children ‼️ CHI can't accurately count/report those waiting. Unbelievable in terms of wait list
@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
10 days
281 children are currently waiting for #scoliosis surgery. Despite some parents signing outsourcing forms 5 months ago, there has been no movement. A spinal taskforce spokesperson stated "I wouldn’t know that" when asked for a timeframe and mentioned plans for 8 children who
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6 months
@caulmick @sinnfeinireland @davidcullinane Disappointing but not surprising. Very disappointed at our local TDs for not supporting us & our children when we need it most.
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@scolionetwork
4 months
Where is @DonnellyStephen ? Where is @BernardGloster ? No comment. No care. Children suffering horribly. All missing in action on #scoliosis #spinabifida issue.
@RTERadio1
RTÉ Radio 1
@RTERadio1
4 months
“It’s a form of torture” 13 year old Liam is one patient at the mercy of increasing waiting times for life-altering spinal surgery. The curve in his spine is now over 85 degrees, causing severe pain and making him sicker as time goes on. His mum Pamela spoke to @oconnellbrian
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4 years
218 children waiting for #scoliosis surgery - Aug 2020 Some waiting years according to their parents. Children in pain. Children that can’t thrive. Children who need access to care. #twip @DonnellyStephen @AnneRabbitte @rodericogorman @davidcullinane @alankellylabour
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6 months
And @DonnellyStephen has left the building … How disrespectful to the children and parents who have travelled from all over Ireland. Surely, any meeting could have been rescheduled. Needless suffering of our children caused by abject failure of ministerial responsibility.
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3 months
As a mother there is no worse feeling than your child’s pain is being ignored. Communication is such an important basic & one that @OCO_ireland ref as a rec in their Ivy Report. So what has changed ? @DonnellyStephen How has the escalation process changed ? @SimonHarrisTD
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
3 months
Liam is 5 weeks + 1day in hospital today. What are the exact barriers to accessing care for this boy ? @DonnellyStephen Why has he yet to be seen by a spinal team ? @SimonHarrisTD Why is there no urgency on part of @CHI_Ireland ? Why no communication to @pamdennehy ?
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9 months
312 children waiting on #scoliosis surgery. @DonnellyStephen has failed to deliver timely & safe #Spinal Care to children. No targets met. Ongoing failing of our children resulting in life long health complications. #FFArdFheis23 @LeoVaradkar statutory inquiry needed.
@DonnellyStephen
Stephen Donnelly
@DonnellyStephen
9 months
Delighted to be at Healthcare session at #FFArdFheis23 with @MaryButlerTD @LorrCliff @JohnLahart and @ShaneCassells
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@scolionetwork
4 years
An 11-year-old Dublin girl undertook a special mission on Tuesday to hand deliver a letter to the Taoiseach's office seeking action on #scoliosis waiting lists. https:// @LeoVaradkar @DonnellyStephen @MaryLouMcDonald @ericbrennan_ @22Q11_Ireland
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11-year-old waiting for spinal surgery delivers personal letter to Taoiseach

Sophie Brennan has to wear a body brace at night to limit the extent of spinal curving

www.irishexaminer.com
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
11 months
This is heartbreaking. Harvey cannot thrive. He is living with pain. He needs a #scoliosis surgery. 19m allocated last year for scoliosis surgery, yet children still wait. Dysfunction & poor governance result in long waits & poorer outcomes. @CHI_Ireland @HSELive
@RTEUpfront
Upfront with Katie Hannon
@RTEUpfront
11 months
"I have to watch my son go through horrific pain." Stephen describes how his son Harvey is waiting on surgery which has been cancelled due to reviews into aspects of orthopaedic surgery at Temple Street Children's Hospital. #RTEUpfront
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
2 months
You need to make contact with @pamdennehy and explain why her son is now many week’s in hospital still waiting for a surgery despite Pam escalating her concerns for her boy. #scoliosis @fiannafailparty
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@DonnellyStephen
Stephen Donnelly
@DonnellyStephen
2 months
Enjoying the weather, the view and the canvass up Bray Head with Jack Commons this morning.
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
2 months
There is zero accountability. Parents are sleeping on floors in @CHI_Ireland tonight. Nurses are trying to work in tiny rooms with no space. @CeoHardiman moved to Strategic Programme Director NCH despite her glaring failings as CEO CHI. @SimonHarrisTD now Taoiseach
@rtenews
RTÉ News
@rtenews
2 months
#Breaking The completion date for the new National Children's Hospital will be further delayed, the Public Accounts Committee will hear tomorrow
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
4 months
Today we listened to @pamdennehy speak of her son Liam who is currently 2 wks in hospital in Tralee as it is now too unsafe for him to be at home. @oconnellbrian Liam is only 13. He needs access to his surgery. @DonnellyStephen @SimonHarrisTD the Buck stops with you.
@RTERadio1
RTÉ Radio 1
@RTERadio1
4 months
“It’s a form of torture” 13 year old Liam is one patient at the mercy of increasing waiting times for life-altering spinal surgery. The curve in his spine is now over 85 degrees, causing severe pain and making him sicker as time goes on. His mum Pamela spoke to @oconnellbrian
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
1 month
Michelle Long and Claire Cahill at the Scoliosis Advocacy Network share his concerns. “The minister's failure to hold CHI accountable has caused significant harm to our children, preventing many from reaching their full potential,” they said. Children
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Probe needed into €19m 'misspent' scoliosis funds

The Scoliosis Advocacy Network said: 'The minister's failure to hold CHI accountable has caused significant harm to our children'

www.irishexaminer.com
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
6 months
Not one public statement from @CHI_Ireland to reassure parents. To outline how they plan to manage wait lists at this time. More cancellations this week of scoliosis surgeries and OPDs CHI Crumlin. More worry for parents. #scoliosis #spinabifida @SBH_PAG
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
5 months
“Noah’s organs are being distorted, his weight is decreasing, his lung function is being affected, and he is in pain”. A SEVEN-year-old boy from Limerick has had his #scoliosis surgery cancelled for the third time this year @LeoVaradkar @DonnellyStephen
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Seven-year-old Limerick boy has vital surgery cancelled again

SEVEN-year-old Noel Quish from Limerick has had his scoliosis surgery cancelled for the third time this year.

www.limerickpost.ie
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
3 months
It’s day 17 in hospital for 13 year old Liam. The progression of his spinal curve has made it too unsafe to be at home. No date for surgery @SimonHarrisTD @DonnellyStephen no actions taken Waiting on talk shop to be convened while children become inoperable. @SBH_PAG
@RTERadio1
RTÉ Radio 1
@RTERadio1
4 months
“It’s a form of torture” 13 year old Liam is one patient at the mercy of increasing waiting times for life-altering spinal surgery. The curve in his spine is now over 85 degrees, causing severe pain and making him sicker as time goes on. His mum Pamela spoke to @oconnellbrian
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
6 months
@CHI_Ireland @DonnellyStephen must be held to account for the lack of access to care for children #ortho #scoliosis @TomClonan speaks of a child who is now paralysed. @OCO_ireland report after report Rec’s not implemented. @CeoHardiman @IkeOkafor16
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***Seanad suspended*** Senator Tom Clonan - speech from 31 Jan

Senator Tom Clonan - speech from 31 JanCommencement matterThis video is prepared by VideoParliament YouTube ChannelSource: https://www.oireachtas.ieThis cha...

www.youtube.com
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
3 months
Where is @DonnellyStephen ? A minister who has not one comment for all of the children who are left suffering on wait lists. #scoliosis #spinabifida @SBH_PAG #backus
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
9 months
We have absolutely no faith in @DonnellyStephen to lead on this. Nothing achieved weeks later. Children are deteriorating on wait lists while MOH is “considering options” @OCO_ireland will be busy writing up another report it seems. @LeoVaradkar
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Government 'considering' sending scoliosis waiting-list patients abroad

Three hundred and ten children are awaiting scoliosis surgery across Children's Health Ireland, according to figures released by the Scoliosis Advocacy Network

www.irishexaminer.com
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
1 month
@FineGael @SimonHarrisTD @SimonHarrisTD we ( @SBH_PAG ) are still waiting on a date to meet with you to discuss #scoliosis and #spinabifida services for children. There appears to be no urgency on your part 🤷🏼‍♀️
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@scolionetwork
6 months
Tom, we are all behind you and grateful for your advocacy.
@TomClonan
Dr Tom Clonan
@TomClonan
6 months
Hi @DonnellyStephen -I Received Written Instruction at 10.16 am Wed. ‘The Cathaoirleach has asked that you proceed with the Commencement Matter today as another Minister or Minister of State can take the matter’ NO Minister, NO Minister of State Showed Up.
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
2 months
🩻 Scoliosis Awareness Month is here. We’re weary of displaying our suffering children to spur government action. Our children need & are entitled to care. Nearly 10 years of advocacy & not one MoH tweet in support of #scoliosis awareness day/month ever @LeoVaradkar
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
5 years
We would beg to differ ... There are children across Ireland waiting on basic healthcare & scans, to see a consultant. Families who feel no option only to pay for private care. @FineGael have failed to deliver equitable & timely access to public healthcare 4 our most vulnerable
@FineGael
Fine Gael
@FineGael
5 years
“By voting for Fine Gael you can be certain you are voting for a team that can deliver” - @LeoVaradkar #LE19 #EE19
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
8 months
What more can parents/children do to show how necessary these surgeries are ? Children have shared their lives. Cried on TV, allowed pics of their backs be shared. Spoke of their trauma. Who is willing to do something for our children ? Year ending with no hope @LeoVaradkar
@TomClonan
Dr Tom Clonan
@TomClonan
8 months
#Disabled Irish Children NOT getting Surgeries for Complex Spinal Conditions #Scoliosis Some Children at Risk Inoperable ⁦ @scolionetwork ⁩ ⁦ @dianeh116 ⁩ #Disabled Irish Children Allowed Deteriorate to such Extent @HSELive ⁩ are Int’l Outliers. Task Force & Inquiry NOW
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@scolionetwork
10 months
Mr Justice Cregan said it was extraordinary that there had been no replies to letters from his parents requesting the records and they had been forced to retain a solicitor who sent two letters to the CEO. ⁦ @DonnellyStephen ⁩ ⁦ @LeoVaradkar ⁩
Family in spinal case seek son's medical files in court

Temple Street Children's Hospital has accepted there was a 'total breakdown in communication' with the parents of a six-year-old boy who is caught up in the spinal surgery controversy.

www.rte.ie
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
6 months
“Working on”… so what happens to children who needed their op 2022/23. What about the children who have Magec rods implanted 5+years. Are they to be written off as collateral damage. @LeoVaradkar @DonnellyStephen @HIQA @MichealMartinTD
@griptmedia
gript
@griptmedia
6 months
"I don't know the details of that particular case" - Taoiseach Leo Varadkar' when asked about a child being permanently paralysed due to lack of spinal surgery, as raised in the Seanad by Senator @TomClonan this week. Question by @Ben_Scallan .
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@scolionetwork
10 months
Waiting for care - the ongoing state neglect of our children. @LeoVaradkar @DonnellyStephen @BernardGloster @CeoHardiman @SBH_PAG #spinabifida #scoliosis @OCO_ireland reports outline the risk to children yet state & HSE failed to act.
@GillSherratt23
Gillian Sherratt
@GillSherratt23
10 months
Harvey was reviewed today and unfortunately is not currently suitable for surgery for his #scoliosis due to other issues-issues that were supposed to be addressed years ago but instead he has sat on waitlists @CeoHardiman @DonnellyStephen @CHI_Ireland
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
4 months
Still no response from @DonnellyStephen office as to why the spine register was pulled from use and why no communications issued to parents. Total mismanagement of funds and services. No accountability @SimonHarrisTD @LeoVaradkar @BernardGloster @npsoIRL @HIQA @IkeOkafor16
@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
4 months
Email sent to @DonnellyStephen seeking out why this spine register is not in use ? Who’s decision was it to remove it from website & most importantly what happens to all data shared ? Parents had no notification that this was not in use. Let’s see if he has any answers …
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
10 months
We wish to clarify #JustFourMothers are NOT meeting Mr Nayagam. Our position & that of the families we represent remain unchanged We are boycotting any review that reports into @HSELive @BernardGloster railroading ahead despite @IHCA_IE & our concerns
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Consultant heading Temple Street review to meet parents’ groups in the coming days

The Liverpool consultant who will head the review into Temple Street Hospital is to meet with parents’ advocacy groups in the coming days.

www.independent.ie
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
23 days
Sep ‘23 we met with @LeoVaradkar @DonnellyStephen @BernardGloster @chiefnurseIRE @KateOFla and asked them to intervene as a matter of urgency #scoliosis . We raised serious patient safety concerns. Months later and zero action. No outsourcing No insourcing No funding for
@TomClonan
Dr Tom Clonan
@TomClonan
25 days
PLEASE RT - Spinal Surgery - Spinal Review & Urology Interventions Denied to Most Complex, Sickest & Vulnerable #Disabled Children. Limb Reconstruction Also Curtailed -I’m Informed a 2 Year Old Child has had an Amputation. Let. That. Sink. In. IRELAND’s SHAME ⁦ @CHI_Ireland ⁩
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
3 months
@wereontheditch Liam is now 21 days in hospital as it is too unsafe for him to be at home. His whole life on hold while he waits for access to surgery. He is becoming more unwell as his spinal curve progresses. There are at least 270 children needing a spinal surgery. #scoliosis @SBH_PAG
@RTERadio1
RTÉ Radio 1
@RTERadio1
4 months
“It’s a form of torture” 13 year old Liam is one patient at the mercy of increasing waiting times for life-altering spinal surgery. The curve in his spine is now over 85 degrees, causing severe pain and making him sicker as time goes on. His mum Pamela spoke to @oconnellbrian
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
1 month
@CHI_Ireland cannot say how many children are waiting >4months for #scoliosis surgery. ❗️This is either incompetence or hiding figures #NTPF Audit 2017 - recommendations were never implemented. #NTPF figures & CHI wait list figures do not align. A
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Audit of €19m kids' surgery wait lists fund still not finished after four months

AN AUDIT of a €19 million fund to reduce surgery wait lists for kids has still not been completed – more than four months after the Health Minister said he wanted answers “very quickly”. In Februar…

www.thesun.ie
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
1 month
19m allocated to improve services were misspent. @DonnellyStephen failure to hold @CHI_Ireland accountable has resulted in significant harm to our children, preventing many from reaching their full potential. Despite our & @SBH_PAG continual efforts to raise serious patient
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
10 months
A HIQA inquiry directed by @DonnellyStephen is not enough for what has happened to our children. Nor can its remit be sufficient to address all issues. We ask for an external, absolutely independent review outside the Irish Health System. @LeoVaradkar @BernardGloster
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
9 months
Children suspended on surgery wait lists for years … Usually spiel is the child is a complex medical case. Yet our children become more complex in such a dysfunctional system. Wait time for 1st appointments can be years. Remove barriers to care @LeoVaradkar @BernardGloster
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
10 months
Countless contacts to @DonnellyStephen in regards to patient safety and the use of Magec rods over the past years. NO ACTION. Manufacturer IFU state 2 year max implant time. We raised this with @LeoVaradkar @BernardGloster @npsoIRL at last meeting. @wereontheditch
@wereontheditch
The Ditch
@wereontheditch
10 months
Stephen Donnelly misled the public – in a written response to a Dáil question – when he claimed that a controversial surgery for children with serious spinal conditions had been suspended. This wasn’t the case – the surgery was still being carried out.
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@scolionetwork
6 months
“Not being treated within the therapeutic window” 313 children are currently waiting on a #scoliosis surgery in Ireland. The harm, trauma and reduced outcomes to our children can never be fixed. Children who will never reach their potential @DonnellyStephen @CeoHardiman
@TomClonan
Dr Tom Clonan
@TomClonan
6 months
I Raised @orthokids_irl Scandal in Seanad - 150 Children in Pain & Crisis - One Child Permanently Paralysed Due to Delayed Surgery. Last Night I Learned At Least One Beautiful, Precious Child is at Imminent Risk of Dying on This List ⁦ @roinnslainte ⁩ ACT NOW - TASK FORCE NOW
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
22 days
Wishing @ThalidomideIre all the best for their press conference tomorrow. We stand with you, urging the state to listen, respond with respect, and ensure justice is served for all who have suffered and lost due to state neglect.
@ThalidomideIre
Irish Thalidomide Association
@ThalidomideIre
22 days
All set for our press conference tomorrow responding to a very difficult week for us
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
11 months
Statement The Scoliosis Advocacy Network represents children and their families who have been diagnosed with scoliosis. We are shocked, upset and appalled by recent revelations of failings from Children's Health Ireland (CHI). @KatieGHannon @RTEUpfront #rteupfront
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
3 months
When will Liam be reviewed by spinal team ? @SimonHarrisTD @DonnellyStephen Weeks & weeks in hospital deteriorating. Safe care = ongoing review of situation & planning for surgery. EOS scan - anaesthetic rv - respiratory rv etc. @CHI_Ireland must step up. @BernardGloster
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
8 months
Surgeries for children with Spina Bifida & Scoliosis have now been paused since Nov 22. In what other country would this be acceptable ? The window of opportunity is closing for surgical interventions Add to that no access to PICU beds @LeoVaradkar
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Fears children will become 'inoperable' due to staffing shortage at Temple Street Hospital

Temple Street is facing serious challenges running operating theatres despite having opened a fifth just months ago to cope with demand

www.irishexaminer.com
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
25 days
Yet @SimonHarrisTD said - “I left that meeting with a real confidence that the health service is beginning to make progress and getting on top of this issue once and for all. @CHI_Ireland @HSELive ⚠️ An Taoiseach left that meeting knowing that children are not been reviewed at
@UnaKeightley
Úna Keightley
@UnaKeightley
26 days
100’s of children attending the @CHI_Ireland Spina Bifida MDT clinic @TempleStreetHos no longer are receiving a review by a Spinal Ortho Consultant Children not being seen so they cannot be wait listed for surgery @SBH_PAG @scolionetwork #backus Thank you Tom for speaking out
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
3 months
Very hard to reconcile that the CEO presiding over such dysfunction such as #scoliosis care is now tasked with the role of Strategic Programme Director for the NCH. It’s worrying. Nothing new. No accountability. @DonnellyStephen @SimonHarrisTD @BernardGloster @wereontheditch
@wereontheditch
The Ditch
@wereontheditch
3 months
🚨BREAKING🚨 CEO of Children’s Health Ireland, which manages Temple Street Hospital, has been removed from her position and is being reassigned to another role. Eilísh Hardiman’s reassignment comes after The Ditch’s exposure of serious allegations on practice at the hospital.
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@scolionetwork
5 months
In 18m Noah’s #scoliosis has grown by 80° going from 26 to 100° & is crushing his lungs & making it hard for him to breathe @DonnellyStephen “When the shunt went in, some infection went in at the same time, so he got meningitis, #infectioncontrol
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‘He is sleeping on the floor’: Scoliosis waiting list puts heartbreaking pressure on young Noah

Noah Quish's parents fear the curve on their son’s spine, which is slowly crushing his internal organs, will eventually kill him.

www.limerickpost.ie
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
27 days
Sep ‘23 we asked for basic supports & services for families and children. @SBH_PAG #scoliosis #spinabifida Not one has been implemented to date. No funding for independent opinions. No outsourcing. No insourcing. @SimonHarrisTD having faith in people when absolutely
@caulmick
Mick Caul
@caulmick
28 days
Scoliosis Scandal - sad state of affairs. When will the scheme that allows children to travel abroad be reinstated ? And when will the government fund second opinions, independent of Children’s Health Ireland #CHI @MaryLouMcDonald #D áil #BackUs #scoliosis #HealthCrisis
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
10 months
Over many years of engagement with CHI, HSE and DOH we have come to learn that their is no separation of organisations. Each and every meeting with HSE or DOH we asked for had CHI management present unasked for. Zero separation. Zero transparency. Zero trust.
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
4 months
Email sent to @DonnellyStephen seeking out why this spine register is not in use ? Who’s decision was it to remove it from website & most importantly what happens to all data shared ? Parents had no notification that this was not in use. Let’s see if he has any answers …
@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
4 months
🚩 Despite funding @CHI_Ireland failed to utilise spine register. Link to same not available - … Reply from @npsoIRL @CHI_Ireland say not in use. Shocking disregard for patient safety - register if utilised properly can act as an Early Warning System.
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@scolionetwork
11 months
The source said Green had shared the innovative surgery he was planning at a meeting with consultants, hospital management and the CEO of Children’s Health Ireland (CHI),Eilísh Hardiman. ⁦ @BernardGloster ⁩ ⁦ @DonnellyStephen ⁩ ⁦ @OCO_ireland ⁩
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Temple Street surgeon sourced unlicensed springs for €51 a box to be implanted in children

It was no secret in Temple Street Children’s Hospital that the paediatric orthopaedic consultant at the centre of the current crisis was working on a new t...

www.independent.ie
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
6 years
100 #scoliosis surgeries must be completed by end of year to meet HSE own 447 target. @SimonHarrisTD 2017 promises broken and still not met to date. @OCO_ireland
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@scolionetwork
The Scoliosis Advocacy Network #BackUs
@scolionetwork
11 months
It’s disappointing & disrespectful to families that some of the key people who are in paid roles to protect & ensure safe care to our children are missing in action. No comment. No presence. No leadership. It’s no wonder we are where we are. #scoliosis #TonightVMTV
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
5 months
We support @TomClonan in his call for a debate on @CHI_Ireland with a focus on the impacts of their managerial incompetence. @DonnellyStephen doesn’t trust CHI management with funds yet he expects parents to entrust their children’s care to them. @BernardGloster #BackUs
@TomClonan
Dr Tom Clonan
@TomClonan
5 months
Irelands Shame-The Continued Injury & Suffering of Disabled Children on Surgical Wait Lists-Spinal & Urological Surgeries -Constitutes Abuse.The Real Story of Incompetence @CHI_Ireland & @HSELive is NOT Billions of Euro Cost Overruns -It is the Damage to Disabled Children & Teens
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
6 months
Over 300 children face delays in inpatient #scoliosis surgery. Any Taskforce must be independent, statutory, and have independent experts. The power to direct must be removed from CHI/HSE due to dereliction of duty. #Taskforce #ChildrensRights @DonnellyStephen @CeoHardiman
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
3 years
@ismiseadam Huge need for patient liaison person on each ward. A need for development of better communication to families needed. Should not be task of clinical staff. Designated persons needed in hospitals. @AdvocacyIre
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
27 days
Feb ‘24 @DonnellyStephen added: “Another thing I’m looking to do is to put in place end-to-end funding for any family that wants to avail of care abroad” ❌ July ‘24 - not done ❌ 🚨 every non action has a consequence for our children. ⚠️ 5 months of spinal deterioration
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The Scoliosis Advocacy Network #BackUs
@scolionetwork
2 months
@caulmick @irishdailymail Donnelly must step down at this point. We are sick and tired of being told - “x or y” will happen when they NCH opens. What’s the plan for now @DonnellyStephen ?
@pamdennehy
Pamela Dennehy
@pamdennehy
2 months
@Stephen63224725 @scolionetwork @DonnellyStephen Sleeping on floors ... on a 2 inch thick mattress with joins along mat that keep coming apart 8 weeks and 4 days
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@scolionetwork
6 days
Mother slams HSE over storage of 'nearly new' walking aids outside supply depot @dee111284 “There were at least 20, and maybe as many as 30, wheelchairs, various walking frames and I noticed a few hoists for lifting people out of beds. @nmichael_ie
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Mother slams HSE over storage of 'nearly new' walking aids outside supply depot

Deirdre Taaffe said the equipment appeared to have been stored outdoors for 'weeks'

www.irishexaminer.com
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