Callforcare
CHILDREN as young as one have to travel to Dublin to receive treatment for Juvenile Arthritis despite a third Rheumatologist consultant for adults being appointed to Our Lady’s Hospital in Manorhamilton.
The services provided at Manorhamilton are for adults only, while children in the public health system are waiting up to two years and four months for treatment at Our Lady’s Children’s Hospital.
Juvenile Idiopathic Arthritis ( JIA) is different from adult- onset arthritis in that it is autoimmune in nature - the body starts attacking its own joints.
Over 20 children in the Sligo area have the illness which can have irreversible side effects if not treated in time.
Irish Children’s Arthritis Network ( iCan) is a parent run network providing support and information.
Edel McSharry Hughes from Ransboro is a Parent Representative with iCan for the Sligo area. Her 12 year old daughter Enya was diagnosed with the illness aged just 18 months.
Edel said something must be done to improve the system for children with JIA in the northwest and nationwide.
“The people providing the service are crazy busy. They are doing a great job.
“They operate at a constant pace. It’s just that there are not enough of them. The problem is with the system. It’s not run properly,” said Edel.
“Children with chronic illnesses have frequent appointments and more thought needs to be put into their appointment times. They are missing school waiting for full days,” said Edel.
She said usually for a population like ours there would be five or six Paediatric Rheumatologists.
Yet there are only two in Crumlin and one part time in Temple Street. This, she said, is leading to huge waiting times which can have terrible consequences for the children involved.
“Arthritis in a child is much more dangerous than arthritis in an adult because in an adult, their joints have already formed.
“In a child they are growing. If the joints become inflamed irreparable damage can be done and growth can be affected. Growth cannot be affected in an adult. That is why it is more important that the children are seen quickly and are treated quickly with the evidence based information available to us,” said Edel.
As a nurse herself, Edel is aware of the services provided to adults, in particular those available at Our Lady’s Hospital in Manorhamilton.
“They have the rheumatology centre in Manorhamilton which is excellent. I know there are more adults with it but the care provided to adults is far superior than the care provided to children because there is not enough resources.
“They have a specialty nurse service and an advanced nurse practitioner. They don’t even have an advanced nurse practitioner in Crumlin.
“A lot of things could be managed much better in terms of looking at the child, where they live, how many appointments they have, who they have to see and trying to co- ordinate all of that so that the child gets to stay at school as much as they can, pain free,” said Edel.
She said hospitals in Dublin have tried to develop relation- ships with Paediatricians across the country to see the children but more shared care with specialists regionally is needed.
She feels even doing assessments locally and passing on the information to Crumlin would speed things up.
“There could be a better system where those in the regions wouldn’t have to travel so much. The whole thing of being able to get infusions locally is a must.
“My daughter has had lots of injections into her jaw and her knee and there are all those children waiting. Sometimes they are a whole day up there,” said Edel.
iCan are running a special event day in the Clarion, Sligo on Sunday October 9. The day will be a fun day for children with Juvenile Arthritis while also providing information for their parents. Anyone wishing to come along and meet parents and children who are experiencing JIA are more than welcome.
More information on the event will be available on www. icanireland. ie. iCAN is 100% volunteer based. Comprising of a committee of seven JIA parents no one from iCAN receives a salary. 100% of any money raised goes directly to projects to benefit children with Juvenile Idiopathic Arthritis.