Improving Community Awareness and Understanding of Epilepsy, its Treatment and Diagnosis [Interview][Transcript]

Lisa Rath_Epilepsy_Foundation_Victoria_Diagnosis_TreatmentGuest: 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, we welcome returning guest Lisa Rath as she discusses the topic of diagnosis and treatment of epilepsy. Lisa, with the Epilepsy Foundation of Victoria, provide services that are tailored to respond to each person’s unique goals and aspirations. Their services include information, advice and support, epilepsy counselling, case management and practical assistance, as well as education and training, social and psychological research and advocacy for and with people with epilepsy. Their services can be accessed over the phone, in person, via e-mail or in a range of community settings, such as in a person’s home, school or workplace.

Transcription

Health Professional Radio

Wayne Bucklar: You’re listening to Health Professional Radio with Wayne Bucklar. My guest today is Lisa Rath. Lisa is an epilepsy support worker with the Epilepsy Foundation and is talking to us today from Melbourne in Australia. Lisa welcome to Health Professional Radio.

Lisa Rath: Thank you very much Wayne. It’s a pleasure to be invited and to participate.

W: Now I wonder if you could give us a bit of a thumbnail sketch about what it is that the Epilepsy Foundation does? And then we might move onto diagnosis and treatment if you like.

L: Yeah. Well maybe if I just give some practical examples of the task I’ve been working on today for example. And no two days are the same, I mean yesterday I was working on our helpline. We’ve got a helpline that is open Monday to Friday, 9 to 5. And we get predominantly telephone inquiries and a lot from interstate as well from Victoria. We are not a crisis service so that’s why we’re not open 24 hours a day. And that any inquiry whether it comes via phone, email or drop in, unannounced drop ins in to our services, or agency – we’ve got 2 offices in Victoria, 1 in Melbourne, and 1 in Geelong. The intake worker rostered for the day responses and the queries are incredibly diverse. And the people who contacts us are very diverse, from doctors ringing us for the latest advice about what the National Driving and Guidelines are, to grandmothers, grandparents ringing us, to parents newly diagnosed children. So that is what occupied my time yesterday. But today for example, I’ve been working with a family to develop an epilepsy management plan prior to some of our education and training staff going out to a school to do training. So that the staff have a much better understanding of that particular child’s epilepsy, now had to provide appropriate support. And I’ve also been doing some work, we’re running a forum for young people between the ages of 12 to 24 in the Melbourne CBD on Saturday. And a number of my colleagues and myself are going to be actively involved in running this forum to … is guided by their own understanding of what are the issues for adolescences and what services should we be providing. So it’s a really diverse range, we have support groups, we run get aways. We had a very successful get away for families with children with epilepsy under the age of 18 recently, had 16 families from all over regional Victoria and Melbourne. And that was a fabulous experience. So we run quite a lot of that sort of stuff as well.

W: It does sound like you lead a very interesting life there Lisa.

L: It’s incredibly diverse. And I have been with the Foundation nearly 26 years now and even though it’s one neurological condition – it is incredibly diverse. The job is never ever dull.

W: And it is a condition that does present in a variety of ways and forms, isn’t it?

L: It does. And no matter how hard we try to raise awareness in the community and to provide really effective education, people still have a very narrow, they’re still a lot of misunderstanding, misconceptions about epilepsy in the community and they still have a narrow understanding of what seizures look like and what epilepsy is. There’s no doubt about that at all.

W: Now Lisa people who are coming or looking for your services, do they need to be referred? Or can they self-refer?

L: No, they can self-refer. In fact we get lots and lots of self-referrals. We do have a referral form on our website for professionals who refer. So we do get a lot of referrals for example from disability organizations because we’ve got some fantastic training packages that are target to different audiences if you like. So we’ve got a disability package that’s appropriate for people who work in disability supported accommodations or agencies providing day programs and response for example. We’ve got separate packages for training in school. So people, so professionals can refer and we’ve get lots of referral as well from particularly from pediatric neurologists.

W: Uh huh.

L: The Rural Children Hospital in Melbourne for example and other neurologists. So yes, but people can self-refer.

W: Now most of our audience are clinicians of one sort or another. We get about 95% of our audience are either working in acute care, doctors, nurses, allied health professionals, or in aged care. Is there a message you’d like them to take away today as a result of having heard you?

L: Well I honestly think the need for referral to an organization like ours when for example there is an emergency medication called Midazolam that’s commonly prescribed now for use in the community to when neither seizures are prolonged or there’s wearing clusters of surges. And we have nurses and staff who train family members, professionals such as school teachers to administer this medication. But often the medication is prescribed in accident emergency departments. But there’s no thought about whether those family member need training. And so there’s the lack of continuity in referral and pathways, move pathways between the acute hospital setting and the community based setting with the organization like ours. And it’s something that I think both hospital based services and our sort of service need to do a lot of work to improve. So that’s one key message trying to get, don’t forget we’re out here, we can actually provide good support to people once they’re out of hospital and back home.

W: Yes and often having that information at your fingertips when you’re having a busy day in I&E is it a challenge, I have sympathy for the people in I&E. But I do agree with you, but those move pathways are critical to preventing your patient turning back in acts of emergency.

L: That’s right. And a lot of the big public hospitals I know in Melbourne for example, we’ve got three big public hospitals that have fantastic specialist neurological epilepsy clinics. Now my other message would be that please refer people to us if they identify that there is some ongoing issues. And often when people are interacting with the doctor there is a limited capacity, there is limited time, there is a limited opportunity to provide really good support and information. And that’s where why people often contact us or the person with epilepsy or a family member because they need more time to digest what these diagnosis means, what impact is that going to have on their life, what limitations if anything it might impose. So this is where we can really work in a very complimentary sessions with neurologists and hospital based services like that.

W: Now Lisa in every occupation there are misconceptions, and it’s my favorite question in every interview. What’s the biggest misconception amongst your colleagues, clients, patients that drive you nuts and keep you awake at night?

L: I think there’s a bit of, my experience in terms if we focus on the hospital based staff is there is a degree of skepticism I think that I’ve gleaned over the years from hospital based specialist. For example a staff, allied staff about a value of a service like ours and not for profit, that was really established by a group of parents about 50 years ago when their adult children were not receiving adequate services. So I think that’s one thing that I think. And that’s probably partly because we haven’t done a good enough job to establish relationships with all these…people to tell them about break of services we provide. So I think that’s a misconception that there’s no point referring to an organization like ours because what help can they provide and why would people need it. So I think that would be one thing. And I think in terms of general miss, an ignorance about epilepsy people still think that it’s a contagious disease in some quarters in the community obviously not hospital based staff. So there are a lot really entrenched myths about epilepsy that are really difficult to break down. I mean a lot of people don’t understand or don’t realize that most people get very good treatment outcomes when they’re diagnosed. And a lot of people think that if you’ve got epilepsy you must have an associated intellectual disability or cognitive impairment and that’s not true for everyone with epilepsy.

W: Yes. Well let’s hope today that having heard you, we might dispel some of those misconceptions a little bit. And certainly given that lots of our audience are in a position to refer, we might hope that some of those referrals would be a little more forthcoming. Now Lisa what’s the best way for people to get more information, is it your website?

L: It is our website which we’re hoping, I mean our website from my point of view is not the most impressive in the field. But we’re actually undergoing a big rebuild of our website. So yes, so go to our website, they can sort of navigate from the home page, they’ll see our contact details. There’s a 1300 number that they can ring. Or they send an email so that we get lots of inquiries. The initial contact from people is often via email. If it’s a professional listening and they think this service maybe useful, ‘I didn’t know about the Epilepsy Foundation’ definitely referral forms are on our website that are easy to find as well. And so we welcome contact from anyone really.

W: And that website is www.epinet is it? E P I N E T dot org dot au (www.epinet.org.au)

L: That’s it Wayne, yes.

W: So I’ll do that again because I always get into trouble for our listeners when they say “You didn’t warn us you were going to give a domain name, and we didn’t have our pencils ready.” So pencil ready listeners www.epinet.org.au. Lisa thank you for your time today, I do appreciate your making yourself available.

L: Oh thanks for the opportunity Wayne. And we’ll look forward to having an increase in referrals from hospital based services.

W: Well maybe. My name is Wayne Bucklar and this is health professional Radio. I’ve been in conversation with Lisa Rath who is an Epilepsy Support Worker for the Epilepsy Foundation. And if you’ve missed my conversation, I have good news. We have a transcript on our website, you can also have the audio archives on YouTube and SoundCloud and you can find all of those at our website www.hpr.fm. You’re listening to Wayne Bucklar, this is Health Professional Radio.