Ms Edel Browne:

The main point on our list of objectives that we want to discuss with the committee is the immediate need for a consultant paediatric urologist. As it stands now, children with spina bifida are not receiving any urological review by a consultant urologist in Temple Street. Since 2009, approximately 300 babies have been born with a neural tube defect, including children with spina bifida. Prior to 2009, children born with spina bifida were transferred to Crumlin. Since 2009, however, all children with neural tube defects have been attending Temple Street. At this point in time, there is a consultant paediatric urologist in Crumlin hospital, but due to the demands and restrictions on him, and the level of children who need urological care, he is no longer able to see any children with spina bifida, apart from extreme situations. He is no longer able to review any children with spina bifida, so our children are not being reviewed or receiving any follow up. As of now, there are 300 babies, toddlers and young children who are receiving absolutely no urological reviews.

Children with spina bifida do have continence issues as a result of their condition. This is a huge issue we have with our children and we want to see an improvement in the quality of their lives. In many cases, children with spina bifida are moving through their younger years but their continence needs are not being examined. They are heading into their school years wearing nappies and pads because no alternative treatment is available to them.

To highlight this issue somewhat better for the committee, I will tell a story about a child with whom I am working at the moment. He is an eight year old boy from Dublin who has been attending Temple Street. He had surgery at birth to operate on the lesion on his spine. He has never been reviewed by a urologist in Ireland, so he was using nappies full-time to address his bladder issues. He went into third class in September. He is fully aware of his continence issues and how they make him stand out from his peers, as one would be aware for an eight year old child. He was using a wash-out procedure in order to irrigate his bowel so his bowels were under control. That is a big social issue for any eight year old if they are to have such accidents. The nappies or pads were being used solely for the bladder.

In March this year, Temple Street had prioritised John for the treatment abroad scheme to travel to St. George's Hospital in London to be reviewed by a urologist. His family were prepared for major bowel and bladder surgery there. The information was given and I supported the family through this transition before travelling abroad for both major invasive surgeries. After travelling abroad in March, he came home after a week following tests, scans and an overview by the urologist in London. A week after he came home, I received a telephone call to say that the urologist had said there was no way John was to be operated on because he was not suitable before less invasive treatments were done first.

To take a step back, the point is that if there had been a urologist in Temple Street, he or she could have undertaken these simple tests and scans here. A simple procedure such as passing a small catheter tube into the bladder to release urine, which is less invasive and easily done, could have been taught here by a specialist nurse. If that could have been done here it would have saved the State a huge amount of money. That was the first case of a child who was sent away under the treatment abroad scheme back in March.

Children with spina bifida are in the high risk category of irreversible kidney damage as a result of the neural rube defect they are born with, which in time can lead to end-stage renal failure and possible death, if not monitored on an ongoing basis. Urology is not an additional option for our children's care, it is a necessary part of the care they need right through life. Kidney failure is a disaster but is predictable and preventable. If their kidneys are adequately monitored, it can be totally prevented. We are aware that an additional urology post has been in the pipeline since 2009 following the transition to Temple Street, but there has been no satisfactory outcome for our children.

I attended the meetings along with Mr. George Kennedy at the HSE since the transition to Temple Street. The funding has been prioritised but the post has not been filled. The story has been the same since 2009. The promises are there but we are anxious as a national organisation to see this progression for our members. We are working alongside our parents and are doing as much as we can. We really want to see a positive move towards appointing a urologist to provide the important care our children need and deserve. We do not want to see children who are born now, ending up with end-stage renal failure in a couple of years' time because there is no monitoring for them. Given the level of care that children got ten years ago in Crumlin Hospital, we have taken a step backwards when it comes to urological care for children with spina bifida. It is extremely difficult to watch.