Support group gets funding for first epilepsy nurse in 20 years

GAINING SUPPORT: Orange Neurology Centre's Tracey Gough with practice manager and support group president Bec Alpen at an epilepsy awareness stall.

GAINING SUPPORT: Orange Neurology Centre's Tracey Gough with practice manager and support group president Bec Alpen at an epilepsy awareness stall.

For the first time in more than 20 years Orange could get an epilepsy support nurse.

Epilepsy Support Group Central West president Bec Alpen said the support group formed in March and has been given funding to hire an epilepsy nurse.

“We’ve got $10,000 from Orange Ex-Services Club at $3000 from Orange City Council,” Mrs Alpen said.

“We will start with once a month for a nurse to start and then that will go to fortnightly and then hopefully we will make it weekly … it will also depend on the need.

“We have a Parkinsons nurse that got installed in the last few years and I saw what benefits came from that.

“I’ve had a lot of patients come to me and say there’s just nothing [in terms of support].”

Mrs Alpen said the funding applications were made months ago but they only found out more recently about the funding.

However, she said it may be months before a nurse is employed in the role.

She said first the Epilepsy Support Group – Central West first needs to be formalised. 

Once employed, the nurse will provide information and support to patients and carers living with epilepsy and to provide education to parents and carers as well as the wider community.

Mrs Alpen said people living with epilepsy could also go to the nurse if they were having issues with their medication.

In the meantime Mrs Alpen said she is trying to raise people’s awareness about epilepsy and said due to preconceived misconceptions about epilepsy many people do not want to tell others about their diagnosis.

“They don’t know how people will react,” she said.

“People are frightened so we need to [overcome] that stigma, there’s 800,000 people per year in Australia who are diagnosed with epilepsy and there are 40 different types.

“When people see a person having a seizure they don’t know what to do.”

Mrs Alpen said she has previously visited a shopping centre in Orange and saw a client having a seizure and instead of helping them, other customers gave them a wide berth and walked away from the person having the seizure. 

She said along with convulsive seizures there’s a wide range of types, severity and symptoms of epilepsy including focal seizures, confusion and becoming unaware of the world around them.

Tips on what to do if you see someone having a seizure:

Convulsive seizures – DO

  • Stay with the person
  • Time seizure
  • Protect from injury especially the head
  • Roll onto the side after jerking stops OR immediately if there is food/fluid/vomit in mouth
  • Observe and monitor breathing
  • Gently reassure until recovered

Convulsive seizures – DO NOT

  • Put anything in the person’s mouth
  • Restrain the person
  • Move the person unless in danger

Focal dyscognitive seizures (non-convulsive seizures)

  • Stay with the person
  • Time the seizure
  • Gently guide away from harm
  • Reassure until recovered
  • DO NOT restrain the person unless in danger

Call triple zero for an ambulance IF:

  • You are in any doubt
  • Injury has occurred
  • There is food/fluid/vomit in mouth
  • Seizure occurs in water 
  • Person has breathing difficulties after jerking stops
  • Another seizure quickly follows
  • Seizure lasts longer than five minutes
  • The person is non-responsive for more than five minutes after the seizure ends. 

(Tips from Epilepsy Action Australia, for more information visit www.epilepsy.org.au)

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