Anger as epilepsy phone service stopped due to lack of maternity cover

Niamh Jones: A 'big increase' in calls from worried parents.

Parents of children with epilepsy have expressed anger after a phone service — providing a swift and direct contact with two epilepsy nurses — was stopped due to a lack of maternity cover.

The phone number allowed people to contact the nurses at Cork University Hospital (CUH) who, in turn, had contact with consultant paediatric neurologists at the hospital.

However, one nurse retired last summer and the other nurse is understood to have began a period of maternity leave. It has led to a surge in calls from concerned parents to the local office of Epilepsy Ireland, prompting the HSE to offer assurances the vacant posts will be filled “in the very near future”.

One concerned parent who spoke with the Irish Examiner and who tried to use the service yesterday said: “The epilepsy nurse’s phone is now serviced by an answering machine which offers an email address as point of contact. The address is not spelled out or even repeated.

“Also, there is no information on where the email is going to and what information needs to be included. The recorded message also suggests to contact your GP or attend A&E.

“There is no explanation offered why the service has been discontinued.”

Niamh Jones, community resource officer with Epilepsy Ireland and based in its Cork office, said the organisation was aware of the issue and had received a “big increase” in the number of calls from worried parents since the phone service stopped.

Ms Jones said that parents could ring the contact number for a variety of reasons, including in the immediate aftermath of their child having a seizure or queries over possible changes in the level of medication being administered, but now the service was not available.

“We have people calling, worrying about their children,” she said, adding that the phone service offered a direct line of communication with the consultant paediatric neurologist in CUH.

Epilepsy Ireland said it understood the period of maternity leave began just before Christmas. Ms Jones said she had “no indication” that cover would be provided to ensure the phone service could resume.

“If they [parents] are missing this link between hospital and the community, it is a huge gap in the service,” she said. “These questions have to be answered from the hospital itself, and we are asking the questions.”

In response, the Health Service Executive said CUH provides a consultant-led epilepsy service and “in the absence of the full allocation of epilepsy nurses the consultant staff are maintaining delivery of the service”.

A HSE spokesman said: “As with all vacant posts there is a process within the HSE for recruiting nursing staff to fill vacant posts. This process is under way and interviews for a locum post are scheduled for Friday, January 29.

“It is expected that all vacant posts will be filled in the very near future.”

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