Better training about epilepsy

By Seymour Telegraph

The staff of Goulburn Options Disability Services have been invited to pilot a new Australian training course for workers in the disability sector.

The training package for disability support workers was launched by Epilepsy Action Australia in Melbourne this week.

The online training promotes enhanced recognition and management of seizures and will have a positive impact for those living with epilepsy and disability.

Goulburn Options chief executive officer Dr Rosey Panelli contributed to the design and review of this new online resource and as a result of her involvement the Goulburn Options staff will be among the first disability workers in Australia to participate in the program.

Epilepsy Action Australia has developed the nationally accredited course to be offered in conjunction with the Australian Red Cross College and has also developed three additional short courses for support workers and families.

Epilepsy Action Australia chief executive officer Carol Ireland said while epilepsy is common among people with disability, many staff have not had access to appropriate training.

‘‘We are very pleased to now offer this epilepsy-specific module tailored to the needs of people working in the disability sector,’’ Ms Ireland said.

‘‘We are particularly grateful to John T Reid Charitable Trusts, Gandel Philanthropy and the Ian Potter Foundation which funded the development of this course. Many disability community workers have little, or minimal, training in identifying and managing seizures.

Almost a third (29 per cent) of workers in the disability sector have no basic training in epilepsy and well above half (59 per cent) have no training in managing emergency situations for people with epilepsy.

‘‘Accurate diagnosis relies on close observation for signs of seizure activity. It is crucial that carers in the disability sector are aware of the sometimes subtle cues that the person is experiencing a seizure.’’

Dr Panelli, who has many years of experience working as an epilepsy educator and researcher, said she is pleased to see the development of epilepsy training that can improve the knowledge of those who care for people with epilepsy.

‘‘There has been a huge knowledge gap about epilepsy in many community and health services but training such as this will improve awareness and understanding about epilepsy. This can help to reduce risk and improve the quality of life for those who live with epilepsy,’’ Dr Panelli said.

Epilepsy is the most frequent medical illness experienced by people with intellectual disability. It is more common in people with intellectual disability than the general population, Ms Ireland said, and the prognosis is worse.

The requirement for multiple medications is higher and they experience more side effects. People with disability and epilepsy also have a higher risk of sudden unexplained death in epilepsy (SUDEP) than people with epilepsy without disability.

One in five people with intellectual disability have epilepsy however, for people with profound intellectual disability the figure is one in two people (50 per cent). In some syndromes, such as Rett and Angelman Syndromes, more than 80 per cent of people will have epilepsy.

‘‘Epilepsy is a neurological condition that disrupts the electro-chemical activity in the brain,’’ Ms Ireland.

‘‘With the right treatment and support, many people with epilepsy can lead a life as ordinary — or extraordinary — as anyone else, including having meaningful relationships, career success, raising children, and following their dreams.’’