Specialist nurses are transforming care for children with epilepsy

Brain Awareness Week

A Cork nurse working with children with epilepsy came up with a plan for CUH that has saved the HSE €260,000 and freed up hundreds of bed days in just two years.

PEOPLE WITH EPILEPSY and their families are calling for an increase in funding so the HSE can create more specialist nursing posts, which they say is transforming their care.

Epilepsy is a neurological brain disorder that can cause recurrent and unprovoked seizures. It is one of the most common neurological conditions in Ireland, and it impacts an estimated 10,000 to 15,000 children under the age of 16, as well as thousands of adults and elderly people.

The HSE has dedicated paediatric neurology services in several major hospitals where children with epilepsy are cared for, but a specialist nurse working in the area has told The Journal that staffing issues and a lack of resources means that teams are “firefighting” rather than improving their services.

There are some areas of optimism, however. Aisling Devitt is an advanced nurse practitioner at Cork University Hospital. She and her team members work with around 840 children and their families, and in the last two years she has transformed their care pathway through the hospital.

“I started a first seizure pathway [an evidence-based plan] in the hospital for when someone first presents in the Emergency Department with a suspected seizure. All in all I think it’s saved the HSE €260,000, and has seen many children get a diagnosis months earlier than they otherwise would,” Aisling explained.

Now, when children present in the ED with a first seizure, once initial investigations and recovery are completed, they are sent home with advice on seizure management and referred to Aisling. Before, she says, they would have been admitted to a ward to wait an average of three days to see a consultant.

“I call about 80% of them within two weeks, and I have a reserved EEG slot [the scan used to detect epilepsy and other conditions], so 60% of those children will be scanned within weeks rather than waiting for months,” she explained.

Aisling added that the main service she provides is support to parents on their children’s care plans and in adjusting medication, which she is qualified to do without a consultant’s input.

“Our consultants are amazing but sometimes people are nervous speaking to someone in that role of authority. We’re there to email or phone and we respond promptly, and we’ll talk parents through things that are worrying them, and give them reassurance that they need Monday to Friday. They need someone to speak to, and I’m very happy that that person is me,” Aisling said.

Annette Prendergast is a mother of three from Tipperary, who has a sixteen-year-old daughter, who has autism and epilepsy.

Her daughter’s epilepsy began in childhood and then came back during puberty after a number of years when her symptoms had alleviated.

She has had 20 seizures in the past six years and at present, she cannot go more than 12 weeks without a seizure occurring.

Annette’s daughter’s seizures vary between tonic-clonic seizures which are full convulsions, and focal aware seizures, which are more localised.

Annette said the seizures are “frightening” and “horrific” for her daughter, and difficult to manage for her as a single parent, who also has another child with autism.

Aisling’s support has made Annette feel, for the first time, that she can manage her daughter’s condition.

“After our first phone call I rang my dad and told him, ‘I think I’m going to be okay’. We came up for plans for different scenarios, and she’s able to help me detect triggers for her, which changes everything,” Annette explained.

She said that her daughter has to undergo an MRI soon and that she knows that Aisling’s support on the day will make a huge difference.

“She feels calmer because the girls are there. We need a thousand more Aislings, because every family going through this should have someone like her. She’s worth her weight in gold,” Annette said.

Aisling said that multiple roles on her team need to be filled, and that funding issues mean that the clinic has not been able to advance in the way it would like to, especially in the area of using video telemetry services to improve diagnosis processes.

The Neurological Alliance of Ireland is calling on the Government to support the HSE in hiring more neurology nurses who specialise across different conditions, in order to offer more supports to families like Annette’s.