By way of background, when the controversy broke last year reading alleged use of unlicensed medical products in Children’s surgeries, I immediately met with the then Taoiseach, Leo Varadkar, and the Minister for Health, Stephen Donnelly. Whilst expressing my anger at what had happened with these unlicensed products, I also emphatically outlined that this was symbolic of the wretched services for all people with Spina Bifida and/or Hydrocephalus. Since being appointed CEO of SBHI a little over three years ago, I have been contacted by family members of people with the conditions of all ages outlining their despair at our health services. This ranged from delays in children’s surgeries, non-existent community care, delays in delivery of equipment, lack of housing, lack of opportunities for remedial works to housing, non-existent home support and care and on and on. Living with the conditions is hard enough, knowing that your country basically doesn’t give a damn to ease that burden is shameful.

The Taoiseach and the Minister asked me what could be done to change this. In one of my previous jobs I witnessed at first hand the benefits that could accrue from developing a specific Taskforce aimed at revolutionising a service. I used Cardiac and Cancer services as an example of this. When dedicated time and commitment was given to these specialties, a huge improvement in services followed. Out of this came the Paediatric Spinal Taskforce which I was invited to sit on. I agreed to do so on the basis that I would constantly advocate for the lifelong nature of the disabilities and the obvious shortfalls in services for all people with the conditions, young and old.

In the short time that the Taskforce has been in existence, I have been able to secure movement on two crucial issues, children’s surgeries and the transition from child to adult services. When I have had the opportunity to speak to members on this issue, I have asked that you trust me to know what I am doing given the experience I have gained in my previous jobs. Many of you have and I thank you sincerely for that. Services for so many of our members have degenerated alarmingly and will take time to be turned around. But as I said at the AGM, I am confident that we are heading in the right direction. I can’t tell you when we will get there but I hope you know me well enough by now to know how committed I am to our members and how tirelessly I will strive to reach a day when we will have a service in this country for all people living with Spina Bifida and Hydrocephalus which will be the envy of everyone.

By way of background, when the controversy broke last year reading alleged use of unlicensed medical products in Children’s surgeries, I immediately met with the then Taoiseach, Leo Varadkar, and the Minister for Health, Stephen Donnelly. Whilst expressing my anger at what had happened with these unlicensed products, I also emphatically outlined that this was symbolic of the wretched services for all people with Spina Bifida and/or Hydrocephalus. Since being appointed CEO of SBHI a little over three years ago, I have been contacted by family members of people with the conditions of all ages outlining their despair at our health services. This ranged from delays in children’s surgeries, non-existent community care, delays in delivery of equipment, lack of housing, lack of opportunities for remedial works to housing, non-existent home support and care and on and on. Living with the conditions is hard enough, knowing that your country basically doesn’t give a damn to ease that burden is shameful.

The Taoiseach and the Minister asked me what could be done to change this. In one of my previous jobs I witnessed at first hand the benefits that could accrue from developing a specific Taskforce aimed at revolutionising a service. I used Cardiac and Cancer services as an example of this. When dedicated time and commitment was given to these specialties, a huge improvement in services followed. Out of this came the Paediatric Spinal Taskforce which I was invited to sit on. I agreed to do so on the basis that I would constantly advocate for the lifelong nature of the disabilities and the obvious shortfalls in services for all people with the conditions, young and old.

In the short time that the Taskforce has been in existence, I have been able to secure movement on two crucial issues, children’s surgeries and the transition from child to adult services. When I have had the opportunity to speak to members on this issue, I have asked that you trust me to know what I am doing given the experience I have gained in my previous jobs. Many of you have and I thank you sincerely for that. Services for so many of our members have degenerated alarmingly and will take time to be turned around. But as I said at the AGM, I am confident that we are heading in the right direction. I can’t tell you when we will get there but I hope you know me well enough by now to know how committed I am to our members and how tirelessly I will strive to reach a day when we will have a service in this country for all people living with Spina Bifida and Hydrocephalus which will be the envy of everyone.

-Gerry Maguire

Chief Executive Officer