National charity Epilepsy Action has heavily criticised current paediatric epilepsy services in Northern Ireland. Services are failing children with epilepsy across the country, forcing desperate families to travel abroad to access the treatment they need.
Northern Ireland health minister, Michael McGimpsey, announced earlier this year that an additional £220,000 a year would be used to improve paediatric neurology services. He advised that this money would primarily benefit children with severe epilepsy. The minister was interviewed tonight as part of a special BBC investigation, broadcast over three nights this week.
Epilepsy Action welcomes this additional funding but warns that more epilepsy specialist clinicians are desperately needed to improve services for children with epilepsy.
Epilepsy is a complex condition that cannot be diagnosed with a simple blood test or other tool. It relies on the experience of a specialist clinician to take a case history and use diagnostic tests to make a proper diagnosis. To effectively treat the 1,600 children with epilepsy in Northern Ireland, Epilepsy Action calculates that the health service needs to provide:
- at least two paediatric neurologists with a specialist interest in epilepsy, working full-time with children with epilepsy; and
- at least four paediatric epilepsy specialist nurses.
Currently, there is only one working paediatric neurologist in Northern Ireland, who is not focused solely on epilepsy. Epilepsy Action believes that there is a paediatric neurologist with a specialist interest in epilepsy due to be appointed in September.
There is only one paediatric epilepsy specialist nurse in Northern Ireland, who has been in post since January. Prior to this, there had been no paediatric epilepsy specialist nurse in Northern Ireland for several years. Epilepsy Action believes this is wholly unacceptable. More epilepsy specialist clinicians and nurses are needed to ensure children with epilepsy receive the appropriate level of care.
The BBC programme also featured the story of three-and-a-half year old Billy Caldwell. Billy, who has severe epilepsy, has been forced to travel to Chicago for treatment, as the care he needs is not available in Northern Ireland. Epilepsy Action is concerned that an increasing number of children with epilepsy are travelling abroad for treatment, because of poor paediatric epilepsy services in Northern Ireland.
Simon Wigglesworth, deputy chief executive of Epilepsy Action, said: "It is extremely worrying that families of children with severe epilepsy feel the need to take such drastic action to access the necessary treatment. Billy's story demonstrates that paediatric epilepsy services in Northern Ireland need to be vastly improved.
"Even the most basic of paediatric epilepsy services are woefully inadequate in Northern Ireland. It is impossible for one paediatric neurologist to see the 1,600 children with epilepsy in Northern Ireland, let alone children affected by other neurological conditions.
"We need more paediatric neurologists with a specialist interest in epilepsy and more epilepsy specialist nurses. Only then will we see improvements in the poor services currently in place. We urge the health minister to prioritise epilepsy and start providing the standard of service children in Northern Ireland deserve."
To find out more about Billy Caldwell, please visit www.billycaldwellfoundation.com