Make the Scoliosis and Spina Bifida children's crisis your red line issue in the upcoming Irish general election.
- A red line issue is a non-negotiable concern that determines your support for a general election candidate.
- We ask you to make the lack of timely treatment for children with Scoliosis and Spina Bifida your red line in the upcoming election.
- These children face long, painful waits for critical surgeries and often repeated, with minimal progress despite years of promises.
- By prioritising this issue, you’ll ensure candidates commit to ending this healthcare crisis for vulnerable children.
- Our key asks to end the crisis are laid out below
Key asks
What do we the parents & children need to happen
- Statutory inquiry..A statutory inquiry is needed to investigate the systemic failures in Ireland's healthcare system that have left children with spina bifida and scoliosis without adequate care and support for years.
- Insourcing Ireland has only a handful of pediatric spinal orthopedic surgeons, leading to long waits for children needing consultations and surgeries. To alleviate this, insourcing pediatric orthopedic surgeons from other countries is essential to share the workload and ensure timely care for these children.
- Solutions Solutions should include a Taskforce excluding CHI, a Crisis Intervention Team or Rapid Reaction Team with international expertise, a healthcare czar, and outsourcing care with a child-centered approach. For families able to travel, a comprehensive support package is essential, including business-class flights, a wraparound care package, and, crucially, a pediatric orthopedic spinal consultant in Ireland to take over the child’s care upon return. Other measures might include funding for post-operative rehabilitation, telemedicine follow-ups, and ensuring clear communication between international and local healthcare teams for seamless care continuity.
- Communication is dire we cannot Access to info on our own children......can't get confirmation of if kids wait listed. Meaningful Advocacy group engagement currently being sent around the houses
- Taoiseach must meet with the parental advocacy groups who engaged in co-design for years. Co -design was brief explanation. Despite years of annual leave blah blah co-design has resulted in the situation being worse than ever.
- CHI Board- the Taoiseach/MOH and Bernard Gloster must publically display confidence in the Children's Health Ireland Board or disband it. The Board of CHI had oversight over the care of children who have been harmed under their care and allowed the misspending of €19 million ring fenced to improve
How can you help
Please bring up the issue with all TD's you meet in the run up to the election
What is happening to our children is unacceptable. Advise them on your thoughts on the current level of care that children with Spina Bifida/Hydrocephalus are receiving.
You don't have to be an expert on the issues; the information is laid out clearly here on our website. All you need is a desire to help end the suffering of our children.
Connect with us on social media
Spread the word about the campaign on social media to help bring about change for our #páistíinpain, using the hashtag #páistíinpain in your posts and connecting with is on the social channels below.
Spina Bifida and/or Hydrocephalus Paediatric Advocacy Group | Facebook
instagram.com/SBH_PAG
https://twitter.com/SBH_PAG
https://linktr.ee/sbhpag
Scolio advcacy network
media links
What is happening to our children is unacceptable. Advise them on your thoughts on the current level of care that children with Spina Bifida/Hydrocephalus are receiving.
You don't have to be an expert on the issues; the information is laid out clearly here on our website. All you need is a desire to help end the suffering of our children.
Connect with us on social media
Spread the word about the campaign on social media to help bring about change for our #páistíinpain, using the hashtag #páistíinpain in your posts and connecting with is on the social channels below.
Spina Bifida and/or Hydrocephalus Paediatric Advocacy Group | Facebook
instagram.com/SBH_PAG
https://twitter.com/SBH_PAG
https://linktr.ee/sbhpag
Scolio advcacy network
media links
Be prepared for Government spin
There is a taskforce set up to solve the issue
The taskforce is .....
it is terrible CHILDREN WILL BE SENT ABROAD-"NO EXPENSE SPARED"
No written info. Many children are too. Economy seats. Post Op care
the taoiseach has met with the families
He met with CHI and adults who
WHEN THE CHILDREN'S HOSPITAL OPEN IT WILL ALL BE GOOD
no time to wait.
REVIEWS
Minister of State at the Department of Health Seanad Éireann debate-Nov 2021
"... children with a range of needs rely on the Orthopaedic services of Children's Health Ireland, for example, children with spina bifida, hip deformity and other Orthopaedic needs. The complex needs of these children remain at the forefront of service provision"
⚠️Our children are not at the forefront of service provision, see here for evidence of same statements such as this as they are unjustifiable to our children.
"... children with a range of needs rely on the Orthopaedic services of Children's Health Ireland, for example, children with spina bifida, hip deformity and other Orthopaedic needs. The complex needs of these children remain at the forefront of service provision"
⚠️Our children are not at the forefront of service provision, see here for evidence of same statements such as this as they are unjustifiable to our children.
Blaming the Covid Pandemic & Cyber Attack
We are all acutely aware that the Covid Pandemic has occurred, as well as the HSE Cyber attack, and we acknowledge the impact that this has had on administering the already substandard level of care our children received prior to this.
However, long before the pandemic a 2014 report and this RTÉ news report advised that there were major advances to be made to a grossly under-resourced Spina Bifida Paediatric service, unconscionably the recommendations did not materialise.
However, long before the pandemic a 2014 report and this RTÉ news report advised that there were major advances to be made to a grossly under-resourced Spina Bifida Paediatric service, unconscionably the recommendations did not materialise.
Again below needs edited below but want to keep format
Why don't you go private or go abroad?
Spina bifida/Hydrocephalus is a lifelong condition, accessing care privately or abroad is not the solution.
We have highly skilled medical staff who are fantastic but do not have the resources or support to deliver timely treatment. Private health creates a two-tier system where children of families who can afford to go privately have an advantage over children who can not afford private health care. As a group we feel all children should have equal access regardless of their socio-economic status.
In Nov 2021 this was discussed during the Oireachtas joint committee on health & again in Jan 2022 consultant Orthopaedic surgeons stressed that private health or treatment abroad does not offer a solution.
Accessing treatment abroad is not straightforward as our children require regular follow ups, have medication and medical equipment to transport, not to mention the added stress to our children by leaving their support systems behind.
Again this is not the solution. We have the superbly skilled healthcare professionals here in Ireland who can provide the treatment needed. Our children should not have to leave the country to get this care.
We have highly skilled medical staff who are fantastic but do not have the resources or support to deliver timely treatment. Private health creates a two-tier system where children of families who can afford to go privately have an advantage over children who can not afford private health care. As a group we feel all children should have equal access regardless of their socio-economic status.
In Nov 2021 this was discussed during the Oireachtas joint committee on health & again in Jan 2022 consultant Orthopaedic surgeons stressed that private health or treatment abroad does not offer a solution.
Accessing treatment abroad is not straightforward as our children require regular follow ups, have medication and medical equipment to transport, not to mention the added stress to our children by leaving their support systems behind.
Again this is not the solution. We have the superbly skilled healthcare professionals here in Ireland who can provide the treatment needed. Our children should not have to leave the country to get this care.
Why doN't you take a legal case regarding this?
In Ireland, it is not possible to take a group case, legal action must be taken individually. That may provide a singular family with
financial compensation but access to comprehensive medical care that is timely and effective is more valuable and unquestionably a better use of state resources.
Early intervention to prevent long-term complications is crucial. Wasting precious years going to Court to receive financial compensation will not help a child whose bones are by then inoperable, or whose kidneys have failed while waiting. This is not about financial compensation, but about the wellbeing of our children.
financial compensation but access to comprehensive medical care that is timely and effective is more valuable and unquestionably a better use of state resources.
Early intervention to prevent long-term complications is crucial. Wasting precious years going to Court to receive financial compensation will not help a child whose bones are by then inoperable, or whose kidneys have failed while waiting. This is not about financial compensation, but about the wellbeing of our children.
Why didn't the mothers of these children take folic acid?
A common misconception is that folic acid totally prevents neural tube defects like Spina Bifida. The reality is that folic acid reduces the incidence of a neural tube defect by up to 70% and it is an oversimplification to suggest that folic acid alone will reduce the incidence of NTDs in Ireland. The causes of NTDs are multi-factorial and many of our children and their families have participated in ongoing research with Hospitals & Universities to further this knowledge.
Adequate folic acid intake or supplementation does not guarantee a child will be born without a neural tube defect. Folic acid alone will not stop children being born with spina bifida and it is very distressing for mothers to be judged, blamed and told, “You should
have taken folic acid”. If only it were that simple.
Further information on this topic is available here
Adequate folic acid intake or supplementation does not guarantee a child will be born without a neural tube defect. Folic acid alone will not stop children being born with spina bifida and it is very distressing for mothers to be judged, blamed and told, “You should
have taken folic acid”. If only it were that simple.
Further information on this topic is available here
WHY DON'T YOU JUST GO TO THE EMERGENCY DEPARTMENT AND REFUSE TO LEAVE?
CHI Temple Street ED & CHI Crumlin ED are for emergency life-saving situations such as road traffic accidents and shunt failures. Unfortunately, if every SB/H child waiting for surgery went to the Emergency Department it would create chaos and put the lives of
children in emergency situations at risk.
We do not want to prevent children from accessing acute life-saving treatment, we want children with ongoing complex needs to have timely access to care and to be treated with dignity and respect.
children in emergency situations at risk.
We do not want to prevent children from accessing acute life-saving treatment, we want children with ongoing complex needs to have timely access to care and to be treated with dignity and respect.
YOU SHOULD COMPLAIN TO...
Parents have complained. Parents have gone to the Ombudsman for children. Parents have gone to their TDs. Parents have written to the Minister of Health, the Department of Health and Children's Health Ireland. Parents have reluctantly gone to the media, as no one wants to publicise their child's suffering. We have pursued each and every avenue imaginable to us. We have now decided to come together as a group to advocate for our children so their voices can finally be heard. Further information can be found here on our campaigning up and down the country.
HOW ARE YOU FUNDED?
We do not receive any funding. We are a group of parents with lived experience of Spina Bifida/Hydrocephalus. We have educated ourselves through attending national and international workshops and study days so we are attuned to what standard of care our children should be receiving. We have taught ourselves coding, website development, etc .to further our campaign. Any cost involved is paid directly by us.
Scoliosis / Spina Bifida - are they the same?
These are two different conditions. Spina Bifida is developed early in pregnancy and presents as a malformation of the spine. Babies are born with a lesion which may be completely open or have a large cyst containing spinal nerves. Scoliosis describes a curvature in the spine which may be caused by multiple factors, including poor positioning in bed, wheelchairs and seating. The uneven push and pull on spinal muscles due to their nerve damage can cause even very young children to develop scoliosis.
Some children with Spina Bifida develop scoliosis as they grow, but it is not inevitable and with careful intervention and prompt treatment, it can be managed well.
Some children with Spina Bifida develop scoliosis as they grow, but it is not inevitable and with careful intervention and prompt treatment, it can be managed well.