The Campaign
Our main goal is simple, to improve the lives of children living with Spina Bifida and/or Hydrocephalus in Ireland by working collaboratively with Children's Health Ireland & the Health Service Executive to ensure timely access to proactive care and services.
What will solve the issues facing these children
- Children's Health Ireland to immediately establish a register of Spina Bifida/Hydrocephalus children that are in their care. The HSE does not have a national database of children born with SB/H. This will provide accurate data on waiting lists.
- Review the Medical charts of children on the register & extrapolate what medical care and treatment they require. e.g. Spina Bifida MDT review, Orthopaedic review, Urological review, Urological scans, Ophthalmological review, procedures, etc. Corroborate with parents to ensure all information obtained is correct. Provide a timeline to parents of when they will occur.
- Develop and standardise transition pathways from Paediatric to adults in Spina Bifida/Hydrocephalus care. Provide teenage patients with a transition plan.
- Adequately resource the SB/H service across all CHI sites.
- Give all SBH children access to an annual Multi-Disciplinary Clinic.
- Continued meaningful engagement with Advocacy Groups. We are aware that CHI is trying to improve on this.
- Providing €5.1million to Cappagh Hospital to increase Orthopaedic surgical capacity for children with complex needs by 400%
What won't solve the issue
WAITING FOR THE NEW CHILDREN'S HOSPITAL
Previous statements advised that “short of an asteroid hitting the planet’ the New Children’s Hospital will be built by 2020”. Neither Asteroid ☄️nor Hospital 🏥has materialised so you can understand why we are concerned when we are advised that all children will have access to a Spina Bifida MDT at the new children’s hospital. Our children do not have time to wait.
the National treatment purchase fund, "waiting list plans" & "targets" to come into effect
The National Treatment Purchase Fund provides care to public patients in private Hospitals. We have been advised by our children's Consultants that private Hospitals do not have the adequate skill set to care for them due to their complex condition of Spina Bifida/Hydrocephalus.
It is blatantly obvious that our children don't have years to wait for targets to be met & waiting list plans completed. Also, we have heard of great plans for decades, unfortunately their implementation has not been followed through upon.
It is blatantly obvious that our children don't have years to wait for targets to be met & waiting list plans completed. Also, we have heard of great plans for decades, unfortunately their implementation has not been followed through upon.
apologies
We have received countless apologies about waiting times and delays from the Minister for Health, the HSE & Children's Health Ireland. Repeatedly pursuing this rhetoric is of no actual benefit to our children who are suffering. It was stated in 2020 that Minister Donnelly was committed to ensuring access for children with Spina Bifida would be improved. We feel the Minister's performance does not align with his statements.
ADVISING that THERE IS A new MRI scanner ON THE WAY
It is great news that a new MRI Scanner is on the way . The current MRI scanner was supplied to Temple Street with funds we believe were provided by Kerry Katona, stemming from her win on I'm a Celebrity...Get Me Out of Here! in 2004.
This new MRI is of course a most welcome addition to facilities at Temple Street Hospital. However, it is unlikely to actually help the bleeding, weeping wounds on the children's bodies & reverse declining kidney function, caused by lack of a care over a prolonged period.
This new MRI is of course a most welcome addition to facilities at Temple Street Hospital. However, it is unlikely to actually help the bleeding, weeping wounds on the children's bodies & reverse declining kidney function, caused by lack of a care over a prolonged period.
misleading claims
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.
Frequently Asked Questions
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.