Spina bifida children suffering due to lack of care
Published 04/09/2014 | 02:30
Children who are born with a condition which leaves them with a gap in the spine are suffering because of a lack of specialists in their care teams, a new report has warned.
Ireland has the highest incidence of spina bifida in the world but half the 500 children with the condition do not have access to a full range of health staff with the expertise to look after their needs.
A study by Temple Street Hospital in Dublin found that most of these children are in wheelchairs over the age of three. The majority of them need continence support and many need to have treatment with a device to drain water from the brain.
A survey of 155 parents whose children have the condition found obesity rates were five times higher than normal and half have eyesight difficulties. Most need ongoing physiotherapy and occupational therapy.
Around 14pc have an intellectual disability and most need to be helped at school when they need to go to the toilet.
Currently the clinic in Temple Street can only offer an annual review to around 46pc of its child patients with spina bifida. It means that nationally just one in five are getting the annual check because of staff shortages.
Doctors warned it was essential for these children to have access to clinics which had a full range of specialists. Dr Jane Leonard, a consultant paediatrician at Temple Street Hospital, said a range of expertise was missing from the team.
"We know what needs to be done but unfortunately there is inadequate manpower and resources at this moment in time. The ideal standard of care is an annual review by a multi-disciplinary specialist team and usually there is seven key professionals on that team.
"At present in Temple Street we only have four of those so we are missing basic fundamental personnel," she said.
"We feel terrible because there is a lot we could do to help these children."
She said recruiting a consultant urologist has proven difficult because to attract the right calibre of candidate you need a full team.
Consultant neurosurgeon Dr Muhammed Sattar, who tragically lost his wife and three children in a fire in Leicester last year, attended yesterday's launch.
"What is very important about today is that everybody has come together to listen and to move forward," he said.
"The focus here is the child with spina bifida who needs help, these children require 24/7 care both at home, in school and so on. We all need to work together and work hard for the health and the safety of these children.
"We need a lot of resources from the HSE but we also need help from all the different disciplines, from the medical side to the physical and occupational therapy side and social work as well."
Responding to the report, the HSE acknowledged the care team needs more support and said this is part of its plan for 2015.