Providing Support and Information to Enhance the Lives of People with Epilepsy and their Loved Ones [Interview][Transcript]

Lisa_Rath_Epilepsy_Foundation_of_VictoriaGuest: Lisa Rath
Presenter: Wayne Bucklar
Guest Bio: Lisa has worked for the Epilepsy Foundation and people living with epilepsy for 25 years, half the lifetime of the organisation. Throughout her work both in regional areas and within Metropolitan Melbourne, Lisa has provided gold standard service in providing up to date information in a way that is understandable and accessible to those affected by epilepsy, whilst also ensuring that medical personnel have a greater focus on the needs of the individual and an understanding of the issues that they are facing in their lives.

Segment overview: In today’s Health Supplier Segment, know more about epilepsy and what you can do to support those with this condition and their loved ones as we are joined by the Epilepsy Foundation of Victoria’s Client Services Manager Lisa Rath. Lisa is a strong advocate for people with epilepsy. She ensures that her clients receive the best services possible to maximize their opportunity to live well in the community despite their diagnosis of epilepsy. The Epilepsy Foundation continues to work towards the aims of enhancing the quality of life for people living with epilepsy and improving community awareness and understanding.

Transcript

Health Professional Radio

Wayne Bucklar: You’re listening to Health Professional Radio. My name is Wayne Bucklar and today I’m joined by Lisa Rath. Lisa is an epilepsy support worker with the Epilepsy Foundation of Victoria. Lisa welcome to Health Professional Radio.

Lisa Rath: Thank you Wayne. We’ve actually just as a matter of interest had our name changed. We used to be called The Epilepsy Foundation of Victoria but we’ll now actually called the Epilepsy Foundation, probably to reflect that were not just providing services in Victoria, which might be something we might discuss a bit further into the interview.

Wayne: Yes. Well let’s talk about both services and where you provide them. What does the epilepsy foundation do?

L: Well we’re a community based, not-for-profit organization that was originally established by some enthusiastic parents when there was no support about 50 years ago for people living with epilepsy in the Victorian community, particularly in Melbourne. During that phase was sort of early institutionalization if you like. So we’ve been around for 50 years and predominantly provided services in Victoria although gradually over time we’ve certainly provided some services interstate as well and that’s likely to expand. But we provide a range of services so we fill the gap I suppose post-hospital. Epilepsy is a really complex family of neurological conditions. So one of the important things to do aside from providing emotional support to people when they’re diagnosed with epilepsy or to parents when children are diagnosed – is to actually provide accurate information about the specific type of epilepsy that particular person has been diagnosed with, and what it might mean for that person. And so the provision of information is vital and one of my tasks during the week is to work on our help line and we do get calls from throughout Australia, because it’s our universal 1300 number and we get a range of people contacting our services with all sorts of questions about epilepsy and it might be partners, it might be parents, it might be GP’s ringing, wanting to know a bit more about driving regulations for example. So they’re people who really are needing some immediate assistance and wants some specific information. We’ve got a fantastic library, we’ve probably got the best specialist epilepsy library in the southern hemisphere. We subscribe to lots of international medical journals that focus on neurological issues and specifically epilepsy, lots of medical text books, also lots of fantastic books and resources, DVD’s for the general public as well – the interested general public and people who are diagnosed. We do a lot of education, we’ve got nurses on staff so for some people diagnosed with epilepsy if they have a tendency to have prolonged seizures or clusters of seizure, their treating doctor may prescribe an emergency medication called usually it’s midazolam these days. So we have nurses who can provide training in the community in a range of settings, they often go to preschool, child care center schools, secondary colleges they will provide training to staff in those settings and the disability setting in the education context, lots of staff who are trained to administer midazolam if a student have a prolonged seizure at school. So that’s a very important part of our service. We can provide training in the work place, so if someone has epilepsy and it’s having an impact on their capacity to work and they want some support from our service, we have the capacity to out and provide some training for their colleagues and their managers. It’s a whole range of other things, we have some peer support programs, we run getaways, we provide advocacy services. It’s very much tailored to the individual person’s set of circumstances.

W: And I can believe that if you’ve been recently diagnosed, to have a child recently diagnosed, the kind of advice that you’ve been given is a bit like a medical monster, there’s heads and hydra and legs everywhere. Having someone you could then quietly have a discussion with who could explain it to you would be just invaluable.

L: Absolutely. I think there’s no doubt about that. But I think we may need to think about any sort of significant medical diagnosis that we might be given over our life’s journey. At that point, that very first point of diagnosis the doctor often gives quite a lot of information and we’re not really always in a position to absorb all of it. So having that backup and for people to feel afraid to discuss issues that are quite personal and quite emotional at times and to feel safe to do that is vitally important. And to be able to ring and get pretty much instant support is also something people really, really appreciate.

W: Lisa most of our audience are clinicians of one sort or another, we get a lot in acute care and a lot in aged care. What’s the message you’d like clinicians to hear from you today as a result of your chat with us?

L: Well I think a couple of things come to mind. I think there’s a lot of work we could do to achieve a much smoother transition from the hospital setting to the community setting. And we probably need to do a much better job at educating clinicians within a hospital environment that our service exist and that we can provide invaluable support for people. So that’s a big challenge. And certainly, we’ve established excellent working relationships with the pediatric neurology unit at the Royal Children’s Hospital for example, very close working relationship there. But we need to replicate that much further. I think the interestingly in the aged care area that the highest onset of new epilepsy occurs in very young children and the elderly. And we’re very aware that people are living to a much older age these days and generally living very well. But there’s a quite a high incidence, a very high incidence of new onset of epilepsy in older people over the age of 65. And that’s often not recognized, that’s often underdiagnosed and all sorts of other potential explanations are given when people start having funny episodes or faints or whatever. And epilepsy is often the last thing that’s considered in this context so it’s a bit of a hidden situation in older people and we really need to do a much better job at educating the wider hospital community about that. And I think the other challenges that when people present to accident at emergency departments and the staff that see them maybe because they’ve had a prolonged seizure for example. They’re often put on medication, anti-epileptic medication that a neurologist would not necessarily prescribe in the first instance. If someone was actually referred to a neurologist who specializes in epilepsy and they’re called “epileptologists.” So actually getting that accurate diagnosis at the onset, a really good treatment plan, a clear understanding of what role the person with epilepsy has to plan, managing their condition is really critical. And epilepsy is often over diagnosed too and confused with people fainting for example or cardiac, think of this as a much more common problem. And people when they faint often have some body jerks and you see that with players at football that are out there on the field you can say there’s a bit of convulsions sometimes at the end. So people in less than expert hands are often mistakenly identified as having epilepsy when they may not, they might have a … cardiac, this could be a problem or the reverse so it’s getting an accurate diagnosis is really critical.

W: You’re listening to Health Professional Radio and I’m in conversation with Lisa Rath who is an epilepsy support worker with Epilepsy Foundation. Lisa what’s the biggest misconception in your work that drive you nuts and keep you awake at night?

L: Oh there’s a few Wayne. There’s a few. I think the things that come to mind is that no matter how hard we try to educate the general community, there’s still an enormous amount of ignorance in the community about what epilepsy is and what seizure looks like. Most people think seizures are the convulsive seizures that people commonly still refer to as “grand mal seizures” but they’re actually more accurately referred to as tonic-clonic seizures. They’re not the most common seizure yet people tend to associate everyone with epilepsy or assume that everyone with epilepsy have that type of seizure. The more common type of seizure is the thing called the focal seizure that’s where the seizure sometimes they’re experienced subjectively, there’s no external clues that the person is having a seizure or the person may behave in a funny strange unusual way, that’s often attributed to other things like alcohol induced behavior or mental health issues. So this huge ignorance and challenges in the community and even in amongst clinicians unfortunately. The other challenges really the stigma. I mean we’ve seen amazing changes in the mental health area, people are so much more willing to speak out about depression, anxiety, other mental health conditions. There still remain this terrible stigma surrounding epilepsy and people are often afraid to disclose that they have epilepsy. And because they’re afraid there’s the consequences that might flow from that. So these are some of the massive challenges really facing the community. I mean the reality is 70% of people who get diagnosed with epilepsy ultimately get complete control of their seizures on the in the anti-epilepsy drugs available to treat epilepsy. So that’s a significant percentage of people who will be able to drive, for whom the epilepsy has a relatively minor impact on their lives.

W: Lisa let’s hope that we can dispel some of those misconceptions today with our audience. Is there a website where people can get more information?

L: Yeah there are a range of really good websites. We’re actually, our website is currently undergoing redevelopment. And I wouldn’t say it’s the most outstanding source of information although we do get a lot of people going to our website. Certainly will give you that address which is www.epinet.org.au. But there are some outstanding international websites, there’s an American one called epilepsy.com it’s has excellent source of very reliable information. There are various UK based websites as well, it’s epilepsy Scotland, Epilepsy Island has also very very good information. Epilepsy Action UK is another very reliable source, and of course close to home the Royal Children’s Hospital neurology unit is an excellent source of information about childhood epilepsy.

W: And if people want to get hold of you Lisa having heard you today, can they ring your organization?

L: They can. They could ring the 1300 number, which is 1300-852-853. And as I say we filled calls from people throughout Australia, predominantly from Victoria and New South Wales, but throughout Australia. And we’re always happy to speak to people, now we’re not an emergency 24-hour line so our lines are open from 9 to 5, Monday to Friday.

W: Lisa thank you very much for your time today, I do appreciate your making yourself available. And it’s been a very informative being able to chat with you. Your passion and caring just comes flooding across the phone in your voice.

L: (laugh)

W: Well thank you very much for your time.

L: Oh thanks Wayne. Well thanks very much for the invitation, much appreciated.

W: And we do wish Epilepsy Foundation well. You’re listening to Health Professional Radio. My name is Wayne Bucklar. If you’ve just missed my interview with Lisa, there’s a transcript on our website. There’s also a sound archive on both YouTube and SoundCloud, our website is www.hpr.fm. This is Health Professional Radio.

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