Driving

Episode 18, 21 September 2018 

National regulations state you shouldn’t drive for two weeks after a TIA or four weeks after a stroke, and that you need medical clearance to start driving again.

Many people find getting back to driving helps their independence and their sense of returning to a normal life, but there can be obstacles. In this podcast, we talk about the process for returning to driving after a stroke, the issues that can affect someone’s ability to drive and what you can do about them. We also consider what happens when you can't return to driving and the impact it can have.

Our guests are occupational therapist Associate Professor Stacey George from Flinders University; stroke survivor Tania Shirgwin, who has regained her licence and organised a fundraising drive; and occupational therapist Simone Russell, from StrokeLine.

You can support Tania's fundraising Long Drive UP at doit4stroke.everydayhero.com/au/the-long-drive 

Podcast transcript

Announcer: Welcome to the EnableMe podcast series, where we bring together stroke survivors, health professionals and researchers providing you with practical advice to enable you on your journey to reclaim your life after stroke. The advice given in this podcast is general in nature and you should discuss your own personal needs and circumstances with your health care professionals. You can join the conversation at enableme.org.au.

This series is presented by Australia's Stroke Foundation, working to prevent, treat and beat stroke.

Chris: [00:33] Having a stroke can affect your driving, which means that you shouldn't drive for two weeks after a TIA or four weeks after a stroke, and that you need medical clearance to start driving again. Now, many people find that getting back to driving helps their independence and their sense of returning to a normal life, but there can be obstacles in the way. In this podcast, we're going to talk about the process for returning to driving after a stroke, the issues that can affect someone's ability to drive, and what you can do about them.

We'll be speaking to occupational therapist Associate Professor Stacey George from Flinders University, and Simone Russell from StrokeLine. But first we have on the line Tania Shirgwin, who got her licence back after having a stroke nearly four years ago. She is now planning a Long Drive UP from Adelaide to Alice Springs to raise money for stroke. Welcome to the podcast, Tania.

Tania: Thank you, Chris.

Chris: [01:32] Now, I do have a lot to ask you, including about your fundraising drive. But first I have to ask you the question that we always ask stroke survivors: could you tell us your stroke story?

Tania: Well, yes, quite happily. I had a stroke Christmas Day, 2014. So I woke up and couldn't feel my left side. And because I worked in an industry where we pushed F.A.S.T. a lot, I knew straight away that I'd had a stroke. And I couldn't move my left side, but I'm right-handed so I was very lucky I could get to the phone. Rang the ambulance straight away.

So I spent Christmas Day in emergency and I'm going to tell you, no one wants to do that. It's not the greatest experience out. But I also spent time in rehab and that, and then I was released to no licence. Couldn't drive and I lived by myself, so I was stuck in a rural area without the ability to drive. So that's my stroke story to the point.

Chris: [02:31] Right. I understand that when you got home you had a letter saying that you couldn't drive. How did that feel?

Tania: Well, it was devastating. But I knew I wouldn't be able to drive because I have hemianopia. So my loss of eyesight, you know already that you're not going to be able to drive. So that wasn't ... It was frustrating but I was prepared for it.

Chris: Can you describe the hemianopia for us, please?

Tania: Well, I can't say the first ... It's two words, isn't it? Hemianopia or something, but I can never say the first part so I just call it hemianopia. And basically I'm blind in both eyes for a certain amount. So I've got partial sight. Probably for me that's the hardest thing. I am a web developer so I'm very visual, and not being able to see as well as I used to does affect me. But the thing with hemianopia, because your eyesight might return.

It took me six months. I wasn't allowed to even consider driving again, or trying to see if my eyesight was fine until your brain kind of calms down. So they won't even test you for six months.

Chris: [03:53] Right. What did you go through after that in terms of getting your licence back? Presumably this is after the six months.

Tania: So the first six months was I'm going to say hell, because you don't know if you're ever going to drive again. You've had a stroke, you're depressed. There's a lot that goes on after, and all stroke survivors will understand what I'm saying. But I went down one day to the ophthalmologist and I thought, "I'm not going to be able to drive. How am I going to cope with this?" You know, trying to get your mindset right.

And when she told me I have enough eyesight to get my licence, I just broke down crying. And I think she totally understood because she had a big box of tissues there and gave me a big hug. After that, that's when it got even a bit harder because then I had to find an OT and learn to drive with my eyesight issues. So that took me 18 months.

Chris: [04:43] I mean, it must have been a huge impact on your life, particularly if you live remotely. I mean, how did you cope in that time that you weren't able to drive?

Tania: Well, look, I don't live remotely. I live in the Barossa, which... it's small towns. But I lived in one town, my mother lived in the other and my physio and doctors were all in another town. So it used to cost me $85 every time to go to the doctors in a taxi. There's no public transport between the towns, so that was a problem. And even though I got ... Oh, what do you call it when you get a discount from the government for transport? But it still costs a small fortune to go anywhere.

I survived thanks to family and friends, and that's all you can do. But once I found my OT and he took me out the first time and he said, "You'll do this fine. You'll be fine." Once I got to that point and he took me out on the open road, my whole life changed again. I thought, "I can do this. I've got this. Let's move on." But it took me 18 months after my stroke to get my licence back.

Chris: [05:59] So was the confidence there a factor as well?

Tania: Yes. Probably I fixated on driving. Everyone fixates on something, I believe, after you've had a stroke. Whether it's walking again or doing something that's really major in your life, you want to regain the before life, to be honest. We all do. Mine, I fixated totally on driving and that got me through. And having a really good OT that understood the process, what people were going through. Yeah, it was just once he said you've got this, you'll be fine, my confidence, yeah, everything changed.

Chris: [06:40] Okay. Now I've been handed a piece of paper that says "homonymous hemianopia". Is that the correct name?

Tania: That's the name. But like I said, I can never say the first bit.

Chris: Excellent. So did you require any modifications to the vehicle or anything to deal with issues like that?

Tania: Yes. I have mirrors. The other thing is I lost movement on my left side and it took me a while to regain that movement. I'm still in pain on my left side all the time. My car was a manual. And I got my full licence back but I have to drive with mirrors. But I found driving a manual car was too difficult, and I think driving a manual car is driving. A country girl here. And so I found that hard, so I've had to swap my car over and get an automatic, which makes it so much easier. I'm zipping around the Barossa all the time now.

Chris: [07:39] Fantastic. And, yeah, so you are planning this fundraising drive. Can you tell us a bit about that?

Tania: Like I said, I fixated on getting my licence back. For some strange reason that was what got me through. And I swore to myself, "Okay, if you're planning to get your licence back, explain it to people." I don't look any different than I did before the stroke. People don't know that I'm partially blind or I've got left-side mobility issues, unless I get up and nearly fall over or something. But I wanted to raise awareness about this, and I wanted to raise funds. The other thing is, I'm originally from Alice and just driving up there once again, you know, it just feels like freedom to me.

Chris: And you're not doing it alone, I understand?

Tania: No. My copilot is David Lloyd. His father died rather young of stroke and David wants to do something to raise awareness for stroke also.

Chris: [08:33] It sounds like a great adventure and I do wish you the best of luck with that. Apart from that, what advice would you have for other stroke survivors who're wanting to return to driving?

Tania: Just find yourself a really good OT. I had to ask lots and lots of questions and I thought these poor guys are going to not want to work with me. Because I had no idea. You know, you're not given this information when you leave the hospital or anything. You've got to find most of this out by yourself. So I just kept asking them questions. And the more I asked the more I understood, which made it a lot easier. But these guys, like OTs, they give you the confidence to do things again too. It's not just getting back on the road but moving, doing different things. So it's really important to make sure you get a good OT.

Chris: Well, look, thank you for that. And I do hope that you get plenty of support from people on your drive. I believe we will be putting a link up to your fundraising page on the EnableMe website so people can find out more and donate.

Tania: Excellent. Thanks, Chris.

Chris: Brilliant. Well, that was stroke survivor Tania Shirgwin.

Announcer: [09:43] Setting goals is crucial to stroke recovery. Goals can be as simple as walking to the letterbox to check the mail, or bigger goals like getting back to work. EnableMe has a unique tool where you and your carer or family can plan what you want to achieve, track how you're progressing and celebrate your successes. You can also connect with other people who set goals similar to yours, and challenge or inspire each other. You can even set up a blog to write down how you are feeling and share your own story. And don't forget, our professionals from StrokeLine can help with personalised and confidential advice to help you grow stronger after stroke. Visit enableme.org.au.

Chris: [10:23] And now we are joined on the phone by Associate Professor Stacey George. Stacey is an occupational therapist from Flinders University and she's published a number of research papers on driving after a stroke. Thanks for joining us, Stacey.

Stacey: Thank you.

Chris: [10:35] We've talked about, there's a time that you definitely shouldn't drive after a stroke or a TIA, and that's four weeks for a stroke or two weeks for a TIA – but longer if you have a commercial licence. But is it possible to say when most people can start driving again, or is that different for everyone?

Stacey: It's very different for everyone. It really depends on the combination of changes that they have following their stroke and how they interact together. So those, what's important to remember, they're minimum standards you can't drive. But then after that there'll be a range of people that go straight back to driving after that if there's no changes following their stroke and they're medically cleared. Or people that take a number of months or years to go back.

Chris: [11:15] What are the kind of issues that people can have that might affect their driving, or their returning to driving?

Stacey: Yeah well, there's a range of issues that are variable and individual. There may be things around vision, so people's eye movement, double vision, their ability to see the whole spatial area when they're driving. There may be weakness in their arms and legs, their balance. Fatigue is a big one following stroke and that can be both physically – so how long they can operate the physical controls of the vehicle – or it can be more cognitive or visual related where people get overwhelmed by all that stimuli coming in from driving.

Because it's quite a complex task and everything's changing all the time. One big area is also seizures that can be quite common after stroke. And with a seizure you need to have at least 12 months seizure-free time. But in saying that, all these things, everyone's individual changes, but also how they improve over time, will vary as well. So they're just minimum standards for when people can commence examining going back to driving.

Chris: [12:05] Okay. Are any of the impairments that you might have, sort of deal-breakers? Is there something that someone could have that you would say, "Oh, no, they're not going to be able to drive again." Or again, is this something that is a different degree for everybody?

Stacey: Yeah, there is some deal-breakers but it does depend on how far following their stroke is, and some things do improve rapidly. Other things take longer and improvement still happens with neuroplasticity. But some of the things that are really important is vision, the standards for how well they can see and how much of the visual environment they can see. Because, of course, with driving vision is so important.

Some of the other things that are really hard to retrain are things like, that sort of judgement, anticipation. So we're talking about further on after a rehab recovery process, but they're quite difficult to retrain as well. But if things are purely physical, there's many modifications that are available and people can really learn to adapt. And we'll talk more about those. So there is some deal-breakers, but it really depends on where they are following the time since their stroke and if we're anticipating recovery or not.

Chris: [13:13] Okay, so what is the process then for driving assessment and getting that clearance?

Stacey: Well, there's a bit of a phased process. But medical clearance needs to be provided by a specialist, and that's staged in the standards. So people need to have that clearance previously. And then for those people that have some functional changes following their stroke, and that might be related to vision, physical, thinking, etc., then there's the opportunity to visit someone like an occupational therapist who specialises in driving assessment.

And what this often involves is that they will do a pre-driving assessment where they look at vision, cognition, physical that may influence driving. They establish the type of vehicle and modifications people may require, and the type of on-road they'll do. And then people participate in on-road assessment with a driving instructor to really look at how those changes following their stroke impact on driving, what can be alleviated and what may be rehabilitated as well.

Chris: [14:22] Okay. Now, as I mentioned, you have done quite a bit of research on driving after stroke. What kind of things have you studied and what sort of things have you found?

Stacey: Well, I love this area of research. So there's probably three key areas that I focused on in my research. And I still work clinically in driving, so I still work with people every day that give me more ideas for research. So I've looked at assessments and, you know, it's very difficult within a clinical setting or when you're sitting in an office to determine are people ready to go back to driving? Is there areas that will make them unsafe driving, or is there areas that we think we can rehabilitate?

So we've done some work around looking at the types of assessments that really give us the best information of when it's most likely people are going to pass or participate in rehab and get back to driving. 'Cause you really want to look at that timing. But people's confidence and also how we use resources as well. And we've found that it's really a combination of things that look at visual scanning, how quickly people process that information and how they can make decisions. And this has been really well supported from some interesting research coming from Canada, where they're looking at people doing assessments and then looking at how they're going on a driving simulator while they're actually getting their brain scanned. So it's a combination of functions. Not one small test is really going to predict that, so we need to look at complex and interrelated skills. 

We've also looked at how we can measure people's confidence in driving in a standardised way, because we know that confidence really relates to people being able to get back to driving and how they can self-regulate or adjust their driving skills to keep them safe once they get there.

The other area we're really looking at is retraining. So we did a review, which we're just updating now, around what is the evidence for effectiveness for retraining and stroke internationally. And there isn't much, and that's mainly because a lot of the research hasn't been done. There's a little bit of evidence around driving simulation, but we're looking at comparing driving simulation and driving lessons to see what aspects following stroke they'll retrain, and potentially a combination of both. So we're just collecting that data now and some results will come out next year. 

And the other important thing we have looked at is people's, following stroke, their driving perspective. And that's really demonstrated to us that driving is really, really important to people following stroke. It's really pivotal to their independence and their sense of themselves and life satisfaction, so it's an important area for all of us within stroke work to really address it with our client group.

Chris: [16:49] Yeah, that's definitely a common impression we've got from our community. We've had some... we normally put a call out for our questions for our podcasts, and we've had quite a few people expressing frustration when they have been told they can't drive, for instance by their GP, when they think they should, or they've got other advice from another health professional who says they should be able to return to driving.

Stacey: Absolutely, yes.

Chris: Yeah. Is there anything that can be done about those, I guess, differences of opinion? Or like an appeal, I suppose?

Stacey: Yeah. I think what we need to do is perhaps consider more education around what the standards are as well, because I see the same when I see clients in clinic, that they've often been told conflicting aspects of what the process is. So we really need, as health professionals, to look at how we can best provide education to people around what the standards are, but then what the options for assessment and rehab are as well.

The important thing to remember is that the standards state that the clearance does need to be provided initially by a medical specialist, so people need to ensure they have contact with that specialist, depending where they are in Australia. But the other thing I find is it's really important to differentiate between the medical and the functional ability. So the medical specialist is signing off on that they meet the medical standards, but the ability to functionally drive is something that can be determined by other health professionals. So differentiating that really gives people a pathway.

Chris: [18:07] I guess this comes back to what we were talking about, about vehicle modifications and those sort of things which will probably be determined by what someone is actually functionally able to do. What kind of modifications or assistance can there be, or maybe conditions on someone's licence that might be imposed when they return?

Stacey: Yeah, there's a range of modifications out there, and with new technology they're always developing and changing. Some of the modifications we prescribe a lot with people following stroke that get them back driving, are things like left foot accelerators which, when people have hemiplegia or weakness in their right side and can't operate the accelerator, it can be flipped over to the left. Things like spinner knobs, which go onto the steering wheel when people have weakness in one arm. You legally need both arms to be able to drive and to have good control of your vehicle. So a spinner knob is a really useful modification that can be put on the strong side.

Chris: [19:04] What is a spinner knob? I've heard this term and I'm not really sure what that is.

Stacey: Basically it's a ball that sits on the wheel on your strong side, and then it allows you to get a full turning circle with one arm. So that if one arm's weak you can still fully control the vehicle while turning. And so they're used quite extensively. There's a big range out there that can be developed for people's particular hand position or function. So they just allow you to achieve good control. Because if you try and do a turning circle with both arms when one's weaker, or one can't participate, you can't maintain control for the whole period of time. And they have a range that have indicators within them, or mechanical indicators as well, if you need to put the indicators on to the other side of the wheel. So they're quite common in things like forklifts and people can learn to adapt to use them quite well. 

The thing about them, though, is that we just don't want to put them on the steering wheel. It's how we use them going forward which maintains safety and skill as well. And also what's important is people need to be taught how to use them effectively, so not to damage the arm if one arm's weak and they're using one arm predominantly following their stroke. We really want to look after that shoulder and arm and the skills associated with that. So they do give people a lot of independence as well, and they're required if you do have weakness and can't use both arms. 

There's mirrors that can be prescribed as well. For example, if you have reduced neck movement or some dizziness, sometimes things like that can be really helpful. But the main thing to recall is that they need to be individually prescribed, and it's that interaction between the equipment and how people use them that make them independent and look after themselves going forward. Because our aim when we get people out there is we want them to be safe and driving for as long as they can.

So the restrictions that go onto people's licences can be things like the equipment or modification prescribed, and they need to be on people's licences if they need to use them to drive. So there's a process in each state to go through regarding that. But some of the other restrictions that may be related to people following stroke are things like distance from home if fatigue is impacting on driving or potentially when people first get back to driving. There may be things like only driving during the day if there's changes in people's vision or how they can contrast between different light.

So they're the types of things that can be put on people's licences. But they're individual and they're determined by a combination of medical, visual and practical assessment together to know what people need to keep them safe out there and keep driving.

Chris: [21:33] I'm thinking again what you mentioned before when you were talking about the research about some of the retraining that you do. Are there things that are available currently for people to do to improve their chances of getting their licence back, apart from these kinds of modifications or maybe in addition to these modifications?

Stacey: Well, there's no evidence to support things yet, but the type of things people participate in is driving lessons or things like driving simulation. And, of course, at that point, well, for driving lessons anyway, people need to be able to have the medical clearance to go back to driving. But prior to that there's a range of things people can do. Really discuss it with their team, their treating team, if they're working with someone.

But really, to break down the skills required for driving. So if we think about driving, it's quite a complex skill but it requires components of vision, movement, thinking skills. So really engaging with their rehab around those subset of skills to work towards driving is really important. And I think that's something we should consider to keep people's goal of driving, but work towards them in a systematic way when maybe they're not quite ready to get there or they're not medically cleared yet to do that.

The other thing that's really important is really for people to keep participating in those activities that they feel that's important, because we know driving offers us such a sense of wellbeing and independence. And we hope most people can get back to driving, but for some people with their stroke they may not be able to. So it's really important to investigate other forms of transport, whether that's public transport or lifts or other forms, so that people can keep doing those activities that are really meaningful to them outside the home that transport is involved with. And that really allows them to maintain their leisure and social activities, and their confidence and wellbeing, following their stroke.

Chris: [23:17] Now, we had one other question that we've recently been asked, which was when we're talking about, I suppose, people not being allowed to drive themselves. Is someone who's got that sort of restriction, are they allowed to then also be a supervisor driver? Say, for a learner driver?

Stacey: No. My understanding is they can't because legally they're required to be able to take over control of the vehicle if the learner driver for some reason can't continue driving. So no, they can't.

Chris: [23:20] Okay. Well, we're just about finished now. Do you have any other final advice for stroke survivors who are looking to return to driving?

Stacey: No, just to really go back and really talk to their treating medical and allied health team about how important driving is to them, and ask questions about the process, and clarity and opportunities for them to maximise their ability to get back as well is important. And seek specialist advice. There's occupational therapists across Australia that really specialise in this area. And sometimes I've found in clinic that people just haven't had the information that things like spinner knobs, etc., are available. So seek out information to get the information at the right time that you need it for increasing your chances of getting back to driving.

Chris: Great. Well, thank you. That's some great advice, Stacey. Thank you so much for speaking to us today.

Stacey: Thank you.

Chris: That was Associate Professor Stacey George.

Announcer: [24:36] If you're a family member or friend of someone that has had a stroke, you know that it's just the start of a long journey to reclaim their life. As one of Australia's biggest killers and a leading cause of adult disability, we still have a long way to go until we can say we have beaten it. At the Stroke Foundation, we draw our inspiration from the determination and persistence of stroke survivors. And that's why we work every day to prevent, treat and beat stroke.

There are many ways you can join us to fight stroke, including volunteering your time, telling your story for us to share with the media, speaking up and approaching your local member of parliament with our advocacy team, getting your workplace or community group behind an event like National Stroke Week or Stride4Stroke, running a fundraiser, donating or leaving a lasting gift in your will, or just by sharing the FAST message with the people around you so all Australians will know how to recognise a stroke and act FAST. Join the Fightstroke team. Find out more at strokefoundation.org.au.

Chris: [25:36] Finally today, we have with us Simone Russell. Simone is also an occupational therapist, and people can speak to her on the Stroke Foundation's StrokeLine. Thanks for joining us, Simone.

Simone: It's my pleasure. Chris.

Chris: [25:48] As I mentioned, you are one of the voices on StrokeLine. Based on what you hear through that, how big an issue is returning to driving for stroke survivors that you speak to?

Simone: Yeah, look, it is one of the big issues or calls that we receive, and also enquiries through EnableMe. I'd say driving is one of the top enquiries, along with some other common enquiries like returning to work and mood changes. So it is definitely a big one. And I think it's for a number of reasons. I think, as Stacey touched on, sometimes there can be conflicting information about return to driving. The process might not be clearly outlined in the rehabilitation or acute phase of the stroke. And so people call us really wanting to clarify, can I go back to driving? What does the process look like? 

And I think also in the early days of stroke that there's so much information given to stroke survivors around their stroke and recovery and prevention, that it's only afterwards that they start to think, "Oh, hang on, what about driving?" So we do get lots of enquiries and it's a really big, important topic for people. I think first they think, "Okay, I've survived the stroke. I need to get home." And then after they're home, driving starts to become one of their big key goals. So it's definitely a big issue. 

It also depends on the person, I think, as well. Sometimes if the person is well supported and has a partner or husband, wife that drives, or family members that are really easy to access for support for driving home after stroke, then it might not be as big a deal or issue for somebody. Or perhaps they weren't driving very often before their stroke and it's not such a big deal. But for the majority I'd say it is definitely a big, big deal. 

People are reliant on driving to get back to work, to socialise, to get about their communities. And particularly in rural or isolated regional areas of Australia, there isn't a lot of other public transport. So people that may not have as many supports can also find that return to driving is a huge, huge issue for them and something they're really keen to explore.

Chris: [27:41] Yeah, and we've certainly heard how it is a priority for people, particularly in those situations, and how it can also take quite a while to get back to driving. But I imagine for some people, though, they never reach that point. They may have impairments that mean that they can't actually return to driving. How do those people cope with that? How do they feel about that, first of all, I guess?

Simone: Yeah. Look, I think a return to driving or driving in general is a fairly emotional and sensitive topic. And I think we've heard Tania share her emotional story, and she is someone that has been able to return to driving even though it was a fairly lengthy process for her. I think Tania's story highlights that it's emotional. Even if people do get back to driving as well, it can be a really big deal.

But absolutely those that aren't able to return to driving for medical reasons or for functional reasons, which Stacey touched on. The two different, you know, the medical kind of reasons that someone might not drive, and also there might be functional reasons why they might not drive. Regardless, it's a big thing for someone to overcome if they're not able to drive again after stroke. You know, that's that real sense of loss of independence, that loss of freedom. And I think driving's really, really attached to someone's sense of self worth and sense of identity.

And again it can really highlight someone may feel more of a burden on their family. Or if they don't have those supports, it can lead to social isolation. And we already know that anxiety and depression is quite common after stroke, and certainly returning to driving and not being able to return to driving can impact on that further. So it's definitely difficult for people that aren't able to return to driving. I think a lot of people struggle with that decision being taken away from them, so that lack of control over it can also be quite difficult to adjust to.

Chris: [29:19] I guess it makes it all the more important then for people in that situation to find alternative options for transport then. What sort of options are there available?

Simone: Yeah, look, Stacey touched on a couple of options. I mean, the most obvious that comes to mind is public transport for people in major cities. But that can be a really big concern for people that are living rurally and more isolated. We sometimes have calls to StrokeLine where stroke survivors are waiting hours for their local bus to pick them up, and then they're having to wait hours again at the other end to get the bus back home. So public transport is an option, but not always an appropriate one for some people. 

Taxi cards, so getting a discounted taxi card is an option. Again, it can be problematic. I think that Tania shared really well, you know, highlighted the fact that it was still costing her about $85 to get to see her doctor even with the taxi card.

Chris: [30:10] Is that subsidised from the state government?

Simone: That's right, yeah. So each state will have different processes for applying for a taxi card, but usually starting with the GP is a good starting point to get that application in to see if you meet the criteria.

You know, other things like community transport. So that might be through the local councils. There's often community buses that can take you shopping. There are some volunteer services in some particular areas in Australia that will also provide some assistance. And in some cases medical transports, so non-urgent medical transport in some cases to hospital appointments can be also an option. But again, it varies depending on where you live, so it's not always available for everybody.

Otherwise, other things might be family and friends, which I think Tania touched on. She said it was really, she was heavily reliant on family and friends to start with after her stroke and when she wasn't able to drive. So family and friends. And also there's services such as Guide Dogs who offer an orientation and mobility service. So if you have, particularly with vision impairment similar to what Tania touched on with her hemianopia and you're not able to return to driving, then there are some rehabilitative services that can actually help you to regain your confidence and independence, accessing the local community.

Travellers Aid is another option for public transport, so it might be someone providing assistance in transit if you're getting to one train station and needing to make your way to another platform, for example. So there's a few different options. It really does depend on where you live and what's available. And giving us a call on StrokeLine or talking to your health professionals, your rehabilitation team, can be a really good step to talk about that and help navigate. And again, really find out what is available then if I can't drive, so that you've got all that information to start to explore.

Chris: [31:53] Okay. Now, speaking of things depending on where you live, I guess we're talking a lot about, I suppose, the impact on people and some of the general issues like medical and functional, like you said, that can affect people driving. But we're also dealing with something that is involved with driving regulations, which do vary around the country. There are, I understand, national standards that were put in place that most states and territories have adopted. However, I'm sure there are some differences. How big a factor is that, the fact that there are going to be these local differences around the country?

Simone: Yeah, look, it does make it a little bit challenging. And I think it's something that we always suggest if people call in, to really become familiar with not just the national fitness to drive guidelines but also their state guidelines as well. So each of the state driving authorities have information on their websites. And certainly on our Return to Driving fact sheet we list all of those contacts.

So I'd suggest making sure that you're really familiar with your state standards, as well as the fitness to drive guidelines and talking to your health professionals and your medical team, the doctors that are involved, to really find out how your state might differ. An example is that in South Australia mandatory reporting from health professionals of someone when they have a stroke is one of the standards, whereas other states aren't currently enforcing that. So it is the stroke survivor's responsibility to report any condition that they may have that might affect driving.

So certainly a stroke survivor, after they've had a stroke, needs to take that and contact the state authority. But as I said, there's some other differences in the state standards. They do vary. So just really being familiar with that helps to understand the process and how it might affect you.

Chris: [33:33] Great. And as you said, that is something people can look up on the fact sheet. Also, I believe we have information on EnableMe and the contacts so people can find out and be informed about what the rules are in their state or territory. Okay, aside from that, Simone, what would be your top tips for people wanting to return to driving?

Simone: Yeah, so I guess just touching on a little bit more about what Stacey and also Tania have shared. I think, really discussing return to driving if it is a goal. So bringing it up really early on and flagging that. You know, really talking to your team about when's the best time to sort of start working on that as a goal. And that can be certainly doing specific rehabilitation exercises that are going to increase some of those skills that Stacey talked about. Like, you know, your attention and concentration or your physical ability. So really strengthening that leg perhaps is going to lead down the track to you being able to get back to driving. So thinking about breaking down that goal into smaller steps to work on, so you feel like you're actually progressing.

But there might be a time or a more appropriate time to have a driving assessment or to have that medical review. So once those minimum timelines of the four weeks after stroke and two weeks after TIA, but down the track it might be that there needs to be that period of time for the vision to settle before you get your vision tested.

Or it might be that, actually, the therapists believe that six to 12 months later you're going to be in a much better position to actually pass that occupational therapy driving assessment and get your licence back. So there might be those sort of discussions that are really important to determine when's the best time to look at driving. It might be that fatigue's really quite significant in the early days and that that may impact on your driving, so you need to wait for a little bit of time to pass.

But otherwise I'd just say make sure that you've got an awareness of the key people involved as well and that you do know the guidelines, or you know the process. And ask questions. I think Tania was great in saying she had to ask a lot of questions and get really a lot more information so she understood the process. So don't be afraid to ask questions. Sometimes a driving assessment is required. Sometimes it is just a medical clearance from the doctor. The journey looks quite different for different people.

I would say, as we said, understand the guidelines and the state guidelines as well if they differ. Liaising with your doctors. You know, if you have a specialist involved, making sure that you keep in contact with them if you wish to review driving down the track. Some people may have also eye specialists involved as well. Obviously you can call StrokeLine for advice if you're wanting some more specific advice around your specific case or your state where you're from. We also have an Ask a Health Professional section on EnableMe. They can always call in or contact us via EnableMe. 

And seek additional support. So if driving isn't a possibility for you after your stroke, make sure that you get adequate support to manage and adjust that change. It is a big change to be told that you can't drive. And seeking either support of a psychologist or a counsellor or talking to your health professionals, talking to your GP, calling StrokeLine. Really getting that support to adjust and also to look at those other options available to make sure that you can still participate in those activities that you enjoy and you can still socialise and still maintain that level of wellbeing.

There is a goal-setting tool as well on EnableMe. Many, many people have driving as a goal, so feel free to come across to EnableMe and access that goal-setting tool as well.

Chris: [36:50] Yeah, I've seen that that big list of everyone wanting to return to driving as their main goal.

Simone: Yes, yes.

Chris: It is heartening, I think, to see that people are so keen about it.

Simone: Yeah, that's right. And another thing that does come up as well is the cost of returning to driving. So calling us on StrokeLine to have a chat about that as well, and what options might be available in terms of funding. Whether it's NDIS funding is available, or whether there's public services available that you can actually undergo. Some of the assessment process through a public system can also reduce costs. So do give us a call, basically, if you've got any questions around return to driving after stroke.

Chris: [37:26] Great. Well, okay. Fantastic, Simone. Thank you. Now, if you want to talk to StrokeLine or get some other excellent advice such as that, remember that you can call it on 1800 787 653, that's 1800 STROKE. Or you can go to the EnableMe website and ask a question. There's an Ask a Question of a Health Professional section, and you can get a response from them and from other stroke survivors who are in similar situations.

Chris: And that's all we have time for today. Now, if you like what you've heard, please take the time to give us a good rating and review on iTunes or whatever podcast service you're using, as that helps to lift us up in the search rankings and other people can then find our podcast.

Chris: So thank you once again to our guests, Tania Shirgwin, Associate Professor Stacey George and Simone Russell.

Announcer: [38:16] That's all for today's EnableMe podcast. You can find out more on this topic and continue the conversation, or listen to other podcasts in this series, at enableme.org.au. It's free to sign up and you can talk with thousands of other stroke survivors, carers and supporters. You can also suggest a topic or provide feedback on this podcast. EnableMe has qualified health professionals from StrokeLine who can answer your questions and give evidence-based advice. The advice given here is general in nature and you should discuss your own personal needs and circumstances with your health care professionals.

Announcer: The music in this podcast is "Signs" by stroke survivor Antonio Iannella and his band The Lion Tamers. It's recorded at Antonio's studio, which you can find out more about at facebook.com/studiofour99.

Announcer: This EnableMe podcast series is produced by the Stroke Foundation in Australia, working to prevent, treat and beat stroke. See strokefoundation.org.au.

Driving

Episode 18, 21 September 2018 

National regulations state you shouldn’t drive for two weeks after a TIA or four weeks after a stroke, and that you need medical clearance to start driving again.

Many people find getting back to driving helps their independence and their sense of returning to a normal life, but there can be obstacles. In this podcast, we talk about the process for returning to driving after a stroke, the issues that can affect someone’s ability to drive and what you can do about them. We also consider what happens when you can't return to driving and the impact it can have.

Our guests are occupational therapist Associate Professor Stacey George from Flinders University; stroke survivor Tania Shirgwin, who has regained her licence and organised a fundraising drive; and occupational therapist Simone Russell, from StrokeLine.

You can support Tania's fundraising Long Drive UP at doit4stroke.everydayhero.com/au/the-long-drive 

Podcast transcript

Announcer: Welcome to the EnableMe podcast series, where we bring together stroke survivors, health professionals and researchers providing you with practical advice to enable you on your journey to reclaim your life after stroke. The advice given in this podcast is general in nature and you should discuss your own personal needs and circumstances with your health care professionals. You can join the conversation at enableme.org.au.

This series is presented by Australia's Stroke Foundation, working to prevent, treat and beat stroke.

Chris: [00:33] Having a stroke can affect your driving, which means that you shouldn't drive for two weeks after a TIA or four weeks after a stroke, and that you need medical clearance to start driving again. Now, many people find that getting back to driving helps their independence and their sense of returning to a normal life, but there can be obstacles in the way. In this podcast, we're going to talk about the process for returning to driving after a stroke, the issues that can affect someone's ability to drive, and what you can do about them.

We'll be speaking to occupational therapist Associate Professor Stacey George from Flinders University, and Simone Russell from StrokeLine. But first we have on the line Tania Shirgwin, who got her licence back after having a stroke nearly four years ago. She is now planning a Long Drive UP from Adelaide to Alice Springs to raise money for stroke. Welcome to the podcast, Tania.

Tania: Thank you, Chris.

Chris: [01:32] Now, I do have a lot to ask you, including about your fundraising drive. But first I have to ask you the question that we always ask stroke survivors: could you tell us your stroke story?

Tania: Well, yes, quite happily. I had a stroke Christmas Day, 2014. So I woke up and couldn't feel my left side. And because I worked in an industry where we pushed F.A.S.T. a lot, I knew straight away that I'd had a stroke. And I couldn't move my left side, but I'm right-handed so I was very lucky I could get to the phone. Rang the ambulance straight away.

So I spent Christmas Day in emergency and I'm going to tell you, no one wants to do that. It's not the greatest experience out. But I also spent time in rehab and that, and then I was released to no licence. Couldn't drive and I lived by myself, so I was stuck in a rural area without the ability to drive. So that's my stroke story to the point.

Chris: [02:31] Right. I understand that when you got home you had a letter saying that you couldn't drive. How did that feel?

Tania: Well, it was devastating. But I knew I wouldn't be able to drive because I have hemianopia. So my loss of eyesight, you know already that you're not going to be able to drive. So that wasn't ... It was frustrating but I was prepared for it.

Chris: Can you describe the hemianopia for us, please?

Tania: Well, I can't say the first ... It's two words, isn't it? Hemianopia or something, but I can never say the first part so I just call it hemianopia. And basically I'm blind in both eyes for a certain amount. So I've got partial sight. Probably for me that's the hardest thing. I am a web developer so I'm very visual, and not being able to see as well as I used to does affect me. But the thing with hemianopia, because your eyesight might return.

It took me six months. I wasn't allowed to even consider driving again, or trying to see if my eyesight was fine until your brain kind of calms down. So they won't even test you for six months.

Chris: [03:53] Right. What did you go through after that in terms of getting your licence back? Presumably this is after the six months.

Tania: So the first six months was I'm going to say hell, because you don't know if you're ever going to drive again. You've had a stroke, you're depressed. There's a lot that goes on after, and all stroke survivors will understand what I'm saying. But I went down one day to the ophthalmologist and I thought, "I'm not going to be able to drive. How am I going to cope with this?" You know, trying to get your mindset right.

And when she told me I have enough eyesight to get my licence, I just broke down crying. And I think she totally understood because she had a big box of tissues there and gave me a big hug. After that, that's when it got even a bit harder because then I had to find an OT and learn to drive with my eyesight issues. So that took me 18 months.

Chris: [04:43] I mean, it must have been a huge impact on your life, particularly if you live remotely. I mean, how did you cope in that time that you weren't able to drive?

Tania: Well, look, I don't live remotely. I live in the Barossa, which... it's small towns. But I lived in one town, my mother lived in the other and my physio and doctors were all in another town. So it used to cost me $85 every time to go to the doctors in a taxi. There's no public transport between the towns, so that was a problem. And even though I got ... Oh, what do you call it when you get a discount from the government for transport? But it still costs a small fortune to go anywhere.

I survived thanks to family and friends, and that's all you can do. But once I found my OT and he took me out the first time and he said, "You'll do this fine. You'll be fine." Once I got to that point and he took me out on the open road, my whole life changed again. I thought, "I can do this. I've got this. Let's move on." But it took me 18 months after my stroke to get my licence back.

Chris: [05:59] So was the confidence there a factor as well?

Tania: Yes. Probably I fixated on driving. Everyone fixates on something, I believe, after you've had a stroke. Whether it's walking again or doing something that's really major in your life, you want to regain the before life, to be honest. We all do. Mine, I fixated totally on driving and that got me through. And having a really good OT that understood the process, what people were going through. Yeah, it was just once he said you've got this, you'll be fine, my confidence, yeah, everything changed.

Chris: [06:40] Okay. Now I've been handed a piece of paper that says "homonymous hemianopia". Is that the correct name?

Tania: That's the name. But like I said, I can never say the first bit.

Chris: Excellent. So did you require any modifications to the vehicle or anything to deal with issues like that?

Tania: Yes. I have mirrors. The other thing is I lost movement on my left side and it took me a while to regain that movement. I'm still in pain on my left side all the time. My car was a manual. And I got my full licence back but I have to drive with mirrors. But I found driving a manual car was too difficult, and I think driving a manual car is driving. A country girl here. And so I found that hard, so I've had to swap my car over and get an automatic, which makes it so much easier. I'm zipping around the Barossa all the time now.

Chris: [07:39] Fantastic. And, yeah, so you are planning this fundraising drive. Can you tell us a bit about that?

Tania: Like I said, I fixated on getting my licence back. For some strange reason that was what got me through. And I swore to myself, "Okay, if you're planning to get your licence back, explain it to people." I don't look any different than I did before the stroke. People don't know that I'm partially blind or I've got left-side mobility issues, unless I get up and nearly fall over or something. But I wanted to raise awareness about this, and I wanted to raise funds. The other thing is, I'm originally from Alice and just driving up there once again, you know, it just feels like freedom to me.

Chris: And you're not doing it alone, I understand?

Tania: No. My copilot is David Lloyd. His father died rather young of stroke and David wants to do something to raise awareness for stroke also.

Chris: [08:33] It sounds like a great adventure and I do wish you the best of luck with that. Apart from that, what advice would you have for other stroke survivors who're wanting to return to driving?

Tania: Just find yourself a really good OT. I had to ask lots and lots of questions and I thought these poor guys are going to not want to work with me. Because I had no idea. You know, you're not given this information when you leave the hospital or anything. You've got to find most of this out by yourself. So I just kept asking them questions. And the more I asked the more I understood, which made it a lot easier. But these guys, like OTs, they give you the confidence to do things again too. It's not just getting back on the road but moving, doing different things. So it's really important to make sure you get a good OT.

Chris: Well, look, thank you for that. And I do hope that you get plenty of support from people on your drive. I believe we will be putting a link up to your fundraising page on the EnableMe website so people can find out more and donate.

Tania: Excellent. Thanks, Chris.

Chris: Brilliant. Well, that was stroke survivor Tania Shirgwin.

Announcer: [09:43] Setting goals is crucial to stroke recovery. Goals can be as simple as walking to the letterbox to check the mail, or bigger goals like getting back to work. EnableMe has a unique tool where you and your carer or family can plan what you want to achieve, track how you're progressing and celebrate your successes. You can also connect with other people who set goals similar to yours, and challenge or inspire each other. You can even set up a blog to write down how you are feeling and share your own story. And don't forget, our professionals from StrokeLine can help with personalised and confidential advice to help you grow stronger after stroke. Visit enableme.org.au.

Chris: [10:23] And now we are joined on the phone by Associate Professor Stacey George. Stacey is an occupational therapist from Flinders University and she's published a number of research papers on driving after a stroke. Thanks for joining us, Stacey.

Stacey: Thank you.

Chris: [10:35] We've talked about, there's a time that you definitely shouldn't drive after a stroke or a TIA, and that's four weeks for a stroke or two weeks for a TIA – but longer if you have a commercial licence. But is it possible to say when most people can start driving again, or is that different for everyone?

Stacey: It's very different for everyone. It really depends on the combination of changes that they have following their stroke and how they interact together. So those, what's important to remember, they're minimum standards you can't drive. But then after that there'll be a range of people that go straight back to driving after that if there's no changes following their stroke and they're medically cleared. Or people that take a number of months or years to go back.

Chris: [11:15] What are the kind of issues that people can have that might affect their driving, or their returning to driving?

Stacey: Yeah well, there's a range of issues that are variable and individual. There may be things around vision, so people's eye movement, double vision, their ability to see the whole spatial area when they're driving. There may be weakness in their arms and legs, their balance. Fatigue is a big one following stroke and that can be both physically – so how long they can operate the physical controls of the vehicle – or it can be more cognitive or visual related where people get overwhelmed by all that stimuli coming in from driving.

Because it's quite a complex task and everything's changing all the time. One big area is also seizures that can be quite common after stroke. And with a seizure you need to have at least 12 months seizure-free time. But in saying that, all these things, everyone's individual changes, but also how they improve over time, will vary as well. So they're just minimum standards for when people can commence examining going back to driving.

Chris: [12:05] Okay. Are any of the impairments that you might have, sort of deal-breakers? Is there something that someone could have that you would say, "Oh, no, they're not going to be able to drive again." Or again, is this something that is a different degree for everybody?

Stacey: Yeah, there is some deal-breakers but it does depend on how far following their stroke is, and some things do improve rapidly. Other things take longer and improvement still happens with neuroplasticity. But some of the things that are really important is vision, the standards for how well they can see and how much of the visual environment they can see. Because, of course, with driving vision is so important.

Some of the other things that are really hard to retrain are things like, that sort of judgement, anticipation. So we're talking about further on after a rehab recovery process, but they're quite difficult to retrain as well. But if things are purely physical, there's many modifications that are available and people can really learn to adapt. And we'll talk more about those. So there is some deal-breakers, but it really depends on where they are following the time since their stroke and if we're anticipating recovery or not.

Chris: [13:13] Okay, so what is the process then for driving assessment and getting that clearance?

Stacey: Well, there's a bit of a phased process. But medical clearance needs to be provided by a specialist, and that's staged in the standards. So people need to have that clearance previously. And then for those people that have some functional changes following their stroke, and that might be related to vision, physical, thinking, etc., then there's the opportunity to visit someone like an occupational therapist who specialises in driving assessment.

And what this often involves is that they will do a pre-driving assessment where they look at vision, cognition, physical that may influence driving. They establish the type of vehicle and modifications people may require, and the type of on-road they'll do. And then people participate in on-road assessment with a driving instructor to really look at how those changes following their stroke impact on driving, what can be alleviated and what may be rehabilitated as well.

Chris: [14:22] Okay. Now, as I mentioned, you have done quite a bit of research on driving after stroke. What kind of things have you studied and what sort of things have you found?

Stacey: Well, I love this area of research. So there's probably three key areas that I focused on in my research. And I still work clinically in driving, so I still work with people every day that give me more ideas for research. So I've looked at assessments and, you know, it's very difficult within a clinical setting or when you're sitting in an office to determine are people ready to go back to driving? Is there areas that will make them unsafe driving, or is there areas that we think we can rehabilitate?

So we've done some work around looking at the types of assessments that really give us the best information of when it's most likely people are going to pass or participate in rehab and get back to driving. 'Cause you really want to look at that timing. But people's confidence and also how we use resources as well. And we've found that it's really a combination of things that look at visual scanning, how quickly people process that information and how they can make decisions. And this has been really well supported from some interesting research coming from Canada, where they're looking at people doing assessments and then looking at how they're going on a driving simulator while they're actually getting their brain scanned. So it's a combination of functions. Not one small test is really going to predict that, so we need to look at complex and interrelated skills. 

We've also looked at how we can measure people's confidence in driving in a standardised way, because we know that confidence really relates to people being able to get back to driving and how they can self-regulate or adjust their driving skills to keep them safe once they get there.

The other area we're really looking at is retraining. So we did a review, which we're just updating now, around what is the evidence for effectiveness for retraining and stroke internationally. And there isn't much, and that's mainly because a lot of the research hasn't been done. There's a little bit of evidence around driving simulation, but we're looking at comparing driving simulation and driving lessons to see what aspects following stroke they'll retrain, and potentially a combination of both. So we're just collecting that data now and some results will come out next year. 

And the other important thing we have looked at is people's, following stroke, their driving perspective. And that's really demonstrated to us that driving is really, really important to people following stroke. It's really pivotal to their independence and their sense of themselves and life satisfaction, so it's an important area for all of us within stroke work to really address it with our client group.

Chris: [16:49] Yeah, that's definitely a common impression we've got from our community. We've had some... we normally put a call out for our questions for our podcasts, and we've had quite a few people expressing frustration when they have been told they can't drive, for instance by their GP, when they think they should, or they've got other advice from another health professional who says they should be able to return to driving.

Stacey: Absolutely, yes.

Chris: Yeah. Is there anything that can be done about those, I guess, differences of opinion? Or like an appeal, I suppose?

Stacey: Yeah. I think what we need to do is perhaps consider more education around what the standards are as well, because I see the same when I see clients in clinic, that they've often been told conflicting aspects of what the process is. So we really need, as health professionals, to look at how we can best provide education to people around what the standards are, but then what the options for assessment and rehab are as well.

The important thing to remember is that the standards state that the clearance does need to be provided initially by a medical specialist, so people need to ensure they have contact with that specialist, depending where they are in Australia. But the other thing I find is it's really important to differentiate between the medical and the functional ability. So the medical specialist is signing off on that they meet the medical standards, but the ability to functionally drive is something that can be determined by other health professionals. So differentiating that really gives people a pathway.

Chris: [18:07] I guess this comes back to what we were talking about, about vehicle modifications and those sort of things which will probably be determined by what someone is actually functionally able to do. What kind of modifications or assistance can there be, or maybe conditions on someone's licence that might be imposed when they return?

Stacey: Yeah, there's a range of modifications out there, and with new technology they're always developing and changing. Some of the modifications we prescribe a lot with people following stroke that get them back driving, are things like left foot accelerators which, when people have hemiplegia or weakness in their right side and can't operate the accelerator, it can be flipped over to the left. Things like spinner knobs, which go onto the steering wheel when people have weakness in one arm. You legally need both arms to be able to drive and to have good control of your vehicle. So a spinner knob is a really useful modification that can be put on the strong side.

Chris: [19:04] What is a spinner knob? I've heard this term and I'm not really sure what that is.

Stacey: Basically it's a ball that sits on the wheel on your strong side, and then it allows you to get a full turning circle with one arm. So that if one arm's weak you can still fully control the vehicle while turning. And so they're used quite extensively. There's a big range out there that can be developed for people's particular hand position or function. So they just allow you to achieve good control. Because if you try and do a turning circle with both arms when one's weaker, or one can't participate, you can't maintain control for the whole period of time. And they have a range that have indicators within them, or mechanical indicators as well, if you need to put the indicators on to the other side of the wheel. So they're quite common in things like forklifts and people can learn to adapt to use them quite well. 

The thing about them, though, is that we just don't want to put them on the steering wheel. It's how we use them going forward which maintains safety and skill as well. And also what's important is people need to be taught how to use them effectively, so not to damage the arm if one arm's weak and they're using one arm predominantly following their stroke. We really want to look after that shoulder and arm and the skills associated with that. So they do give people a lot of independence as well, and they're required if you do have weakness and can't use both arms. 

There's mirrors that can be prescribed as well. For example, if you have reduced neck movement or some dizziness, sometimes things like that can be really helpful. But the main thing to recall is that they need to be individually prescribed, and it's that interaction between the equipment and how people use them that make them independent and look after themselves going forward. Because our aim when we get people out there is we want them to be safe and driving for as long as they can.

So the restrictions that go onto people's licences can be things like the equipment or modification prescribed, and they need to be on people's licences if they need to use them to drive. So there's a process in each state to go through regarding that. But some of the other restrictions that may be related to people following stroke are things like distance from home if fatigue is impacting on driving or potentially when people first get back to driving. There may be things like only driving during the day if there's changes in people's vision or how they can contrast between different light.

So they're the types of things that can be put on people's licences. But they're individual and they're determined by a combination of medical, visual and practical assessment together to know what people need to keep them safe out there and keep driving.

Chris: [21:33] I'm thinking again what you mentioned before when you were talking about the research about some of the retraining that you do. Are there things that are available currently for people to do to improve their chances of getting their licence back, apart from these kinds of modifications or maybe in addition to these modifications?

Stacey: Well, there's no evidence to support things yet, but the type of things people participate in is driving lessons or things like driving simulation. And, of course, at that point, well, for driving lessons anyway, people need to be able to have the medical clearance to go back to driving. But prior to that there's a range of things people can do. Really discuss it with their team, their treating team, if they're working with someone.

But really, to break down the skills required for driving. So if we think about driving, it's quite a complex skill but it requires components of vision, movement, thinking skills. So really engaging with their rehab around those subset of skills to work towards driving is really important. And I think that's something we should consider to keep people's goal of driving, but work towards them in a systematic way when maybe they're not quite ready to get there or they're not medically cleared yet to do that.

The other thing that's really important is really for people to keep participating in those activities that they feel that's important, because we know driving offers us such a sense of wellbeing and independence. And we hope most people can get back to driving, but for some people with their stroke they may not be able to. So it's really important to investigate other forms of transport, whether that's public transport or lifts or other forms, so that people can keep doing those activities that are really meaningful to them outside the home that transport is involved with. And that really allows them to maintain their leisure and social activities, and their confidence and wellbeing, following their stroke.

Chris: [23:17] Now, we had one other question that we've recently been asked, which was when we're talking about, I suppose, people not being allowed to drive themselves. Is someone who's got that sort of restriction, are they allowed to then also be a supervisor driver? Say, for a learner driver?

Stacey: No. My understanding is they can't because legally they're required to be able to take over control of the vehicle if the learner driver for some reason can't continue driving. So no, they can't.

Chris: [23:20] Okay. Well, we're just about finished now. Do you have any other final advice for stroke survivors who are looking to return to driving?

Stacey: No, just to really go back and really talk to their treating medical and allied health team about how important driving is to them, and ask questions about the process, and clarity and opportunities for them to maximise their ability to get back as well is important. And seek specialist advice. There's occupational therapists across Australia that really specialise in this area. And sometimes I've found in clinic that people just haven't had the information that things like spinner knobs, etc., are available. So seek out information to get the information at the right time that you need it for increasing your chances of getting back to driving.

Chris: Great. Well, thank you. That's some great advice, Stacey. Thank you so much for speaking to us today.

Stacey: Thank you.

Chris: That was Associate Professor Stacey George.

Announcer: [24:36] If you're a family member or friend of someone that has had a stroke, you know that it's just the start of a long journey to reclaim their life. As one of Australia's biggest killers and a leading cause of adult disability, we still have a long way to go until we can say we have beaten it. At the Stroke Foundation, we draw our inspiration from the determination and persistence of stroke survivors. And that's why we work every day to prevent, treat and beat stroke.

There are many ways you can join us to fight stroke, including volunteering your time, telling your story for us to share with the media, speaking up and approaching your local member of parliament with our advocacy team, getting your workplace or community group behind an event like National Stroke Week or Stride4Stroke, running a fundraiser, donating or leaving a lasting gift in your will, or just by sharing the FAST message with the people around you so all Australians will know how to recognise a stroke and act FAST. Join the Fightstroke team. Find out more at strokefoundation.org.au.

Chris: [25:36] Finally today, we have with us Simone Russell. Simone is also an occupational therapist, and people can speak to her on the Stroke Foundation's StrokeLine. Thanks for joining us, Simone.

Simone: It's my pleasure. Chris.

Chris: [25:48] As I mentioned, you are one of the voices on StrokeLine. Based on what you hear through that, how big an issue is returning to driving for stroke survivors that you speak to?

Simone: Yeah, look, it is one of the big issues or calls that we receive, and also enquiries through EnableMe. I'd say driving is one of the top enquiries, along with some other common enquiries like returning to work and mood changes. So it is definitely a big one. And I think it's for a number of reasons. I think, as Stacey touched on, sometimes there can be conflicting information about return to driving. The process might not be clearly outlined in the rehabilitation or acute phase of the stroke. And so people call us really wanting to clarify, can I go back to driving? What does the process look like? 

And I think also in the early days of stroke that there's so much information given to stroke survivors around their stroke and recovery and prevention, that it's only afterwards that they start to think, "Oh, hang on, what about driving?" So we do get lots of enquiries and it's a really big, important topic for people. I think first they think, "Okay, I've survived the stroke. I need to get home." And then after they're home, driving starts to become one of their big key goals. So it's definitely a big issue. 

It also depends on the person, I think, as well. Sometimes if the person is well supported and has a partner or husband, wife that drives, or family members that are really easy to access for support for driving home after stroke, then it might not be as big a deal or issue for somebody. Or perhaps they weren't driving very often before their stroke and it's not such a big deal. But for the majority I'd say it is definitely a big, big deal. 

People are reliant on driving to get back to work, to socialise, to get about their communities. And particularly in rural or isolated regional areas of Australia, there isn't a lot of other public transport. So people that may not have as many supports can also find that return to driving is a huge, huge issue for them and something they're really keen to explore.

Chris: [27:41] Yeah, and we've certainly heard how it is a priority for people, particularly in those situations, and how it can also take quite a while to get back to driving. But I imagine for some people, though, they never reach that point. They may have impairments that mean that they can't actually return to driving. How do those people cope with that? How do they feel about that, first of all, I guess?

Simone: Yeah. Look, I think a return to driving or driving in general is a fairly emotional and sensitive topic. And I think we've heard Tania share her emotional story, and she is someone that has been able to return to driving even though it was a fairly lengthy process for her. I think Tania's story highlights that it's emotional. Even if people do get back to driving as well, it can be a really big deal.

But absolutely those that aren't able to return to driving for medical reasons or for functional reasons, which Stacey touched on. The two different, you know, the medical kind of reasons that someone might not drive, and also there might be functional reasons why they might not drive. Regardless, it's a big thing for someone to overcome if they're not able to drive again after stroke. You know, that's that real sense of loss of independence, that loss of freedom. And I think driving's really, really attached to someone's sense of self worth and sense of identity.

And again it can really highlight someone may feel more of a burden on their family. Or if they don't have those supports, it can lead to social isolation. And we already know that anxiety and depression is quite common after stroke, and certainly returning to driving and not being able to return to driving can impact on that further. So it's definitely difficult for people that aren't able to return to driving. I think a lot of people struggle with that decision being taken away from them, so that lack of control over it can also be quite difficult to adjust to.

Chris: [29:19] I guess it makes it all the more important then for people in that situation to find alternative options for transport then. What sort of options are there available?

Simone: Yeah, look, Stacey touched on a couple of options. I mean, the most obvious that comes to mind is public transport for people in major cities. But that can be a really big concern for people that are living rurally and more isolated. We sometimes have calls to StrokeLine where stroke survivors are waiting hours for their local bus to pick them up, and then they're having to wait hours again at the other end to get the bus back home. So public transport is an option, but not always an appropriate one for some people. 

Taxi cards, so getting a discounted taxi card is an option. Again, it can be problematic. I think that Tania shared really well, you know, highlighted the fact that it was still costing her about $85 to get to see her doctor even with the taxi card.

Chris: [30:10] Is that subsidised from the state government?

Simone: That's right, yeah. So each state will have different processes for applying for a taxi card, but usually starting with the GP is a good starting point to get that application in to see if you meet the criteria.

You know, other things like community transport. So that might be through the local councils. There's often community buses that can take you shopping. There are some volunteer services in some particular areas in Australia that will also provide some assistance. And in some cases medical transports, so non-urgent medical transport in some cases to hospital appointments can be also an option. But again, it varies depending on where you live, so it's not always available for everybody.

Otherwise, other things might be family and friends, which I think Tania touched on. She said it was really, she was heavily reliant on family and friends to start with after her stroke and when she wasn't able to drive. So family and friends. And also there's services such as Guide Dogs who offer an orientation and mobility service. So if you have, particularly with vision impairment similar to what Tania touched on with her hemianopia and you're not able to return to driving, then there are some rehabilitative services that can actually help you to regain your confidence and independence, accessing the local community.

Travellers Aid is another option for public transport, so it might be someone providing assistance in transit if you're getting to one train station and needing to make your way to another platform, for example. So there's a few different options. It really does depend on where you live and what's available. And giving us a call on StrokeLine or talking to your health professionals, your rehabilitation team, can be a really good step to talk about that and help navigate. And again, really find out what is available then if I can't drive, so that you've got all that information to start to explore.

Chris: [31:53] Okay. Now, speaking of things depending on where you live, I guess we're talking a lot about, I suppose, the impact on people and some of the general issues like medical and functional, like you said, that can affect people driving. But we're also dealing with something that is involved with driving regulations, which do vary around the country. There are, I understand, national standards that were put in place that most states and territories have adopted. However, I'm sure there are some differences. How big a factor is that, the fact that there are going to be these local differences around the country?

Simone: Yeah, look, it does make it a little bit challenging. And I think it's something that we always suggest if people call in, to really become familiar with not just the national fitness to drive guidelines but also their state guidelines as well. So each of the state driving authorities have information on their websites. And certainly on our Return to Driving fact sheet we list all of those contacts.

So I'd suggest making sure that you're really familiar with your state standards, as well as the fitness to drive guidelines and talking to your health professionals and your medical team, the doctors that are involved, to really find out how your state might differ. An example is that in South Australia mandatory reporting from health professionals of someone when they have a stroke is one of the standards, whereas other states aren't currently enforcing that. So it is the stroke survivor's responsibility to report any condition that they may have that might affect driving.

So certainly a stroke survivor, after they've had a stroke, needs to take that and contact the state authority. But as I said, there's some other differences in the state standards. They do vary. So just really being familiar with that helps to understand the process and how it might affect you.

Chris: [33:33] Great. And as you said, that is something people can look up on the fact sheet. Also, I believe we have information on EnableMe and the contacts so people can find out and be informed about what the rules are in their state or territory. Okay, aside from that, Simone, what would be your top tips for people wanting to return to driving?

Simone: Yeah, so I guess just touching on a little bit more about what Stacey and also Tania have shared. I think, really discussing return to driving if it is a goal. So bringing it up really early on and flagging that. You know, really talking to your team about when's the best time to sort of start working on that as a goal. And that can be certainly doing specific rehabilitation exercises that are going to increase some of those skills that Stacey talked about. Like, you know, your attention and concentration or your physical ability. So really strengthening that leg perhaps is going to lead down the track to you being able to get back to driving. So thinking about breaking down that goal into smaller steps to work on, so you feel like you're actually progressing.

But there might be a time or a more appropriate time to have a driving assessment or to have that medical review. So once those minimum timelines of the four weeks after stroke and two weeks after TIA, but down the track it might be that there needs to be that period of time for the vision to settle before you get your vision tested.

Or it might be that, actually, the therapists believe that six to 12 months later you're going to be in a much better position to actually pass that occupational therapy driving assessment and get your licence back. So there might be those sort of discussions that are really important to determine when's the best time to look at driving. It might be that fatigue's really quite significant in the early days and that that may impact on your driving, so you need to wait for a little bit of time to pass.

But otherwise I'd just say make sure that you've got an awareness of the key people involved as well and that you do know the guidelines, or you know the process. And ask questions. I think Tania was great in saying she had to ask a lot of questions and get really a lot more information so she understood the process. So don't be afraid to ask questions. Sometimes a driving assessment is required. Sometimes it is just a medical clearance from the doctor. The journey looks quite different for different people.

I would say, as we said, understand the guidelines and the state guidelines as well if they differ. Liaising with your doctors. You know, if you have a specialist involved, making sure that you keep in contact with them if you wish to review driving down the track. Some people may have also eye specialists involved as well. Obviously you can call StrokeLine for advice if you're wanting some more specific advice around your specific case or your state where you're from. We also have an Ask a Health Professional section on EnableMe. They can always call in or contact us via EnableMe. 

And seek additional support. So if driving isn't a possibility for you after your stroke, make sure that you get adequate support to manage and adjust that change. It is a big change to be told that you can't drive. And seeking either support of a psychologist or a counsellor or talking to your health professionals, talking to your GP, calling StrokeLine. Really getting that support to adjust and also to look at those other options available to make sure that you can still participate in those activities that you enjoy and you can still socialise and still maintain that level of wellbeing.

There is a goal-setting tool as well on EnableMe. Many, many people have driving as a goal, so feel free to come across to EnableMe and access that goal-setting tool as well.

Chris: [36:50] Yeah, I've seen that that big list of everyone wanting to return to driving as their main goal.

Simone: Yes, yes.

Chris: It is heartening, I think, to see that people are so keen about it.

Simone: Yeah, that's right. And another thing that does come up as well is the cost of returning to driving. So calling us on StrokeLine to have a chat about that as well, and what options might be available in terms of funding. Whether it's NDIS funding is available, or whether there's public services available that you can actually undergo. Some of the assessment process through a public system can also reduce costs. So do give us a call, basically, if you've got any questions around return to driving after stroke.

Chris: [37:26] Great. Well, okay. Fantastic, Simone. Thank you. Now, if you want to talk to StrokeLine or get some other excellent advice such as that, remember that you can call it on 1800 787 653, that's 1800 STROKE. Or you can go to the EnableMe website and ask a question. There's an Ask a Question of a Health Professional section, and you can get a response from them and from other stroke survivors who are in similar situations.

Chris: And that's all we have time for today. Now, if you like what you've heard, please take the time to give us a good rating and review on iTunes or whatever podcast service you're using, as that helps to lift us up in the search rankings and other people can then find our podcast.

Chris: So thank you once again to our guests, Tania Shirgwin, Associate Professor Stacey George and Simone Russell.

Announcer: [38:16] That's all for today's EnableMe podcast. You can find out more on this topic and continue the conversation, or listen to other podcasts in this series, at enableme.org.au. It's free to sign up and you can talk with thousands of other stroke survivors, carers and supporters. You can also suggest a topic or provide feedback on this podcast. EnableMe has qualified health professionals from StrokeLine who can answer your questions and give evidence-based advice. The advice given here is general in nature and you should discuss your own personal needs and circumstances with your health care professionals.

Announcer: The music in this podcast is "Signs" by stroke survivor Antonio Iannella and his band The Lion Tamers. It's recorded at Antonio's studio, which you can find out more about at facebook.com/studiofour99.

Announcer: This EnableMe podcast series is produced by the Stroke Foundation in Australia, working to prevent, treat and beat stroke. See strokefoundation.org.au.