Family's mission of support after loss of a child from epilepsy (From Warrington Guardian)

Family's mission of support after loss of a child from epilepsy

4:20pm Thursday 21st May 2009

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THE dad of a promising young crown green bowler who died in her sleep is campaigning for better awareness of the dangers of epilepsy in children.

St Gregory’s pupil Felicity Farrell, of Broadoak Avenue, Penketh, was 15 when she died at her home on August 8 last year.

Felicity, who was known as Fliss, was diagnosed with epilepsy eight months before her death.

Now her dad Kevin hopes to prevent other families from knowing the same pain as theirs by improving the information given at diagnosis about sudden death from epileptic seizures.

He said: “I made a formal complaint to the North Cheshire Hospitals Trust and Alder Hey Children’s Hospital about the lack of information supplied to us about the possibility of sudden death from epilepsy.

“Both hospitals have acknowledged their awareness of the risks and that they do not routinely discuss the possibility of death from epilepsy, despite there being 1,000 deaths per year in the UK and 400 of those are considered avoidable by epilepsy specialists.

“I have also complained that suitable support following Felicity’s death was not available.”

The 50-year-old customer service advisor wants the initial two-hour consultation on diagnosis broken down into sections and for the information pack to mention the risks of dying from epilepsy and what to look out for.

Mr Farrell added: “Fliss was a happy, loving girl who brought joy to everyone she met.

“You feel helpless enough when you lose someone you love and care for but then we realised the system was full of holes that needed filling.

While it won’t bring her back it might save someone else’s child’s life and I will do all I can to prevent another family enduring the pain and helplessness such a devastating loss brings.

“We only found out afterwards how much risk was involved in Felicity’s case – she was a young person having seizures and her medication wasn’t working.

“Had we been given all the information we could have been more aware of the risks and looked into her sleep management.

“Also, if you are told of the risks and something catastrophic does happen at least you can prepare yourself – our family was completely taken aback.”

The dad-of-four is raising funds for Epilepsy Bereaved, a charity campaigning for more research into why people die from Sudden Unexpected Death from Epilepsy (SUDEP) and other epilepsy-related deaths.

He will be taking part in a sponsored walk on Sunday, which marks the end of National Epilepsy Week, at Heath Park, Manchester.

Anyone wanting to donate can visit justgiving.com/kevinfarrell1

A spokesman for Warrington Hospital said: "When a patient is diagnosed with epilepsy we will have a full discussion about the risks and implications.

"Advice is given to patients and relatives on what situations should be avoided and what relatives should do in the presence of a seizure.

"Thankfully sudden death in epilepsy is very rare.

"We would be happy to have a discuss with Mr Farrell about how we can raise awareness of the risks and promotion of the campaign."

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