Epilepsy support group for children is formed

The Foyle Support Group for Children with Epilepsy has hit out heavily at what they describe as a lack of support from the health authorities.

One man involved with the group, Keith Cradden, has stated that service provision for children with the ailment is "woefully inadequate", something he says that has led to "misery and suffering in many cases for parents and children."

Mr Cradden continued: "The early stages of the development of treatment for a child with epilepsy are crucial for their future well being. Northern Ireland lags behind the rest of the UK and the Western Trust Area is one of the worst areas in the European Union in terms of provision.

"Parents of children with epilepsy are deeply concerned at the failure of the Department and the Trust to provide anything like the services necessary to ensure speedy determination of appropriate treatment and monitoring of the effects of powerful drugs especially on children and young babies."

The distress caused by epilepsy, especially in children is exemplified by the case of one little girl in Londonderry.

Aoibh Cutliffe is just three-years-old and can suffer from between 15-20 epileptic seizures per day. Her mum Brid Cutliffe said: "When Aoibh was born she had hydrocephalus. At the age of nine months the epilepsy began to manifest itself. At the beginning I knew nothing about epilepsy, I would be so panicked I could barely speak to the nurse. But, we've learned to cope although it doesn't get any easier."

Backing the call for a swift overhaul of the current service provision in the Western area Mrs Cutliffe said: "We want to lobby politicians." "There needs to be a comprehensive review of services for children with epilepsy. It's ridiculous that we are expected to get our children up at 5 a.m. and drive to Belfast to they can have an EEG reading. The children need to be asleep when this is done so the only way around it is to get them up really early in the morning.

"The early stages of the development of treatment for a child with epilepsy are crucial for their future wellbeing."

A statement in response from the WHSCT said: "The Western Trust does not receive any dedicated paediatric epilepsy funding. Despite this the Trust has committed to providing specialist services for children referred with complex epilepsy across the western trust area. As part of this service the Trust has two part time (1.0 whole time equivalent) epilepsy paediatric nurses.

"The Western Trust paediatric epilepsy service provides support establishing children's treatment and care plans and also works with other organisations to raise awareness of epilepsy. Children with epilepsy are seen by general paediatrician's with special interest in epilepsy. The specialist nurses provide training for school nurses and community children's nursese.g. to provide rescue medication for children with epilepsy. Subsequently this teaching can be cascaded on to teaching staff.

"Children with complex epilepsy are referred to the specialist neurology service for children provided by the Belfast Trust. In partnership with the Belfast Trust, neurologyclinics are facilitated at Altnagelvin Hospital and the Erne Hospital to provide a local outreach clinic for local families. The Western Trust is an active partner in the regional paediatric epilepsy network.

"The Trust continues to work hard within the available resources to see all children referred to the epilepsy service and to provide information to families with children who have controlled epilepsy and at present do not require specialist services or treatment.

"The Trust will endeavour to expand paediatric epilepsy services by raising these issues and seeking dedicated paediatric epilepsy funding in the future."

The meeting of the Foyle Support Group for Children with Epilepsy will take place tonight (7.30pm) at the offices of Disability Action, Strand Road. Everyone is welcome to attend.