Mum’s plea over epilepsy care ‘chaos’
A mother whose four-year-old daughter takes up to 20 epileptic fits a day has expressed dismay at the lack of medical services for children with the condition in Londonderry.
Bríd Cutliffe spoke out after it was claimed that there is only one part-time specialist nurse in Derry dealing with between 200 and 300 children with epilepsy in the city.
Mrs Cutliffe (35), whose daughter Aoibh was diagnosed at nine months, spoke of the nightmare facing local families. She said: “At the start Aoibh was taking up to 80 seizures a day. On a good day now she will take five seizures and on a bad day up to 20.
“On the whole the treatment we have received from all our medical staff has been out of this world, but neurologists, paediatricians, epilepsy nurses — there are just not enough of them.
“My child started Foyleview School last week and I had to provide an emergency medication plan for the teachers. That should have been given to me when she was diagnosed at nine months, but we didn’t have one.
“I rang the paediatrician who wasn’t available, the neurologist in Belfast wasn’t available, the epilep
sy nurse in Derry I have never seen. She probably doesn’t have enough time to see Aoibh, and I don’t blame her, as I believe she is only on a part-time contract.
“Aoibh is on a toxic cocktail of medication. One of the paediatricians said: ‘We are effectively poisoning your child’.”
Mrs Cutliffe said she was now supposed to alter Aoibh’s medication “but I am too afraid to, I don’t know the side-effects”.
Keith Cradden, convenor with Parent Action for Children with Epilepsy (PACE), said the group was formed as a result of difficulties and lack of support for families with young children.
“Many young people with epilepsy are condemned to having poor medical care throughout their whole lives. The medical system is not geared to deal with children with epilepsy.
“70% can be made seizure-free with proper, long-term treatment but in this area it is likely to be below 50%, which is a shocking indictment of the system here.”
A spokesman for the Department for Education said the matters raised were issues for the Department of Health.
A spokeswoman for the Department of Health, Social Services and Public Safety said it was up to the Health and Social Care (HSC) Board, as commissioner of services, “to prioritise and allocate resources to meet the needs of the local population, including those with epilepsy”. The HSC Board has yet to comment, although a statement is expected today.