Where is the evidence?

Episode 6, 17 November 2016

Read the transcript below

The internet is full of health information, and there are so many people offering treatments for stroke, that it can be hard to know what to trust. Especially when you're well and in need of help, you can be very vulnerable to misinformation. So how do you find information that's based on real evidence, and how do you know someone claiming to be a health professional is genuine?

We're going to try to find out how to find evidence-based information and how to sort the good from the bad.

Our guests for this episode are:

  • Professor Tammy Hoffmann, a clinical epidemiologist from Bond University who specialises in evidence-based practice.
  • Dan Englund, who had a stroke at 38-years-old but who has recovered enough to complete a 1000-km run.
  • Jude Czerenkowski, a social worker and national manager of Stroke Connect for the Stroke Foundation.

Online chat
On Thursday 19 January 2017 we held an online chat with the guests from this podcast about finding evidence-based information. Download a transcript of the chat.

Podcast transcript

Download the 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.

You can join the conversation at enableme.org.au.

This series is presented by Australia's national Stroke Foundation and sponsored by Allergan.

Chris: The media and especially the internet are full of health information, and there are so many people out there offering treatments for stroke. It can be very hard to know what to trust. And especially when you have a condition like stroke and you're not well and in need of help, you can be very vulnerable to misinformation.

How do you find information that's based on real evidence and how do you know someone claiming to be a health professional is genuine? We're going to try to find out how to find evidence-based information and how to sort the good from the bad.

We'll be speaking to clinical epidemiologist Tammy Hoffmann about evidence-based practice, and to social worker Jude Czerenkowski abut the pitfalls of looking for treatments and how to avoid them.

First though, we have stroke survivor Dan Englund. Dan's life changed when he had a stroke at only 38 years old, but he's persisted with his rehabilitation and to show just how much he's achieved, in 2014 he ran the distance of 1,000 kilometres. He did that to raise awareness and to reduce the stigma of stroke. Thank you for joining us, Dan.

Dan: You're welcome. Thanks, Chris.

Chris: Now, I'll get onto your run shortly, but first, could you tell us your stroke story?

Dan: It was May 16th 2011. Probably like everyone else, you would've never really paid much attention to a stroke, but I was getting ready for work on a Monday morning and I heard a humming in my left ear and I said to Tania, "What does vertigo feel like?" Because I was starting to hear something as well as feel a bit dizzy. She proceeded to say, "Why don't you go lie down?" which I guess most people would do, just sleep it off.

As I went down to the bedroom, I thought, "No, I'll just go check an email," and as I went to the office desk, turned the computer on, felt my left arm drop to my side. When I felt it, I could just see it drop down to the lap. I thought, "That's strange," and when I looked at it, the left hand was all curled in and when I went to push the chair back, only my right leg moved. The left leg didn't want to activate, and I thought, "Oh, no." Anyway, we were in a three-sided office desk area and my wife Tania couldn't hear me, but I yelled out to her and probably it was two minutes before she came into the room. Our rule in the house is if you need something, you go and get them. You don't yell across the house. She comes barrelling in and says, "What's wrong with you? Why don't you get off?" I said, "Something's really wrong. I can't feel my left side." She said, "Really?" She looked at me and she knew it was serious, and she said, "I think you're having a stroke." Oddly enough, it was the national Stroke Foundation's spam email that brought her attention to this, because it was probably three months prior, she had seen the FAST message and yeah, we called 000 and that was the start of the stroke journey, I guess.

Chris: Right. Now, speaking of journey's though, as I mentioned you've been able to run 1,000 kilometres. First of all, I just want to ask how long did it take you to run that distance?

Dan: Well it was... We did it in 35 days, but it was actually 20—I have to get this right—about 25 days of running. We had some time off in between, just to recover and have some time down with the family, but yeah. Break it into little intervals, between 40 and 50 kilometres a day and, yeah, over the month of August. It was actually 2012.

Chris: Okay, 2012, that was about a year after your stroke then, was it?

Dan: Yes, sir.

Chris: It wasn't that long then for you to get up to that level of recovery, I guess. Now, how did you manage to get to that point?

Dan: Physiotherapy, physiotherapy, physiotherapy. I'm a firm believer in the conventional treatment with physios and occupational therapy.

Hard work, and I would say a very good team, between the stroke unit starting rehab immediately—I think it wasn't even the third day, they had me up on my wheelchair and sitting up and down and they just started immediately. I think that was the best thing that could've happened was to get me back into the movements as soon as possible.

Chris: You had a very good team working with you there, but were there a lot of other people out in the community or that you would get information from who were suggesting other different treatments to try?

Dan: Yeah. Look, we lived in the outback, a long ways from anything and I was getting a little down because the outback only ... Even with a private health insurance plan, I could still only see a physiotherapist twice, no once a week, and it was about a one-hour session once a week, which leaves you however many hours the rest of the week practising, but I felt there had to be something else.

I don't like to shed negative light on things, but there was a gentleman that was running a gym and he was trying to push a theory, and it was really… It was my wife Tania wanted anything we could for therapy, so I went along to this gentleman's gym—and I guess I can tell you, but I don't really feel like smearing names—he charged me $300 for a listening session and all he did was push his own theory and then tried to force me to sign up at a gym. Now, I found that really confronting that there was someone who was going to force you to join a gym for 12 months when you've had a stroke and really, I wasn't even able to do anything at the gym other than physiotherapy.

Now, I went to my doctor and I asked him what he recommended and the best advice that came from him was, "What you've had was a medical event, you need a medical treatment and it doesn't come from a gymnasium." Along with the physiotherapist, she said, "Do I believe in 12 months from now that you'd be better off going to the gym program as well as physiotherapy? No." So I just stuck with my physiotherapy.

Chris: Do other factors come into it as well? Like you said that the cost commitment and the time commitment they're asking from you, is that part of deciding whether something is worth trying?

Dan: When you have a stroke, you really don't have much choice. It's either public physiotherapy through the regional hospital, or you have a private practice, which at the time was so overburdened with everything else between sports and work injuries that they can't just simply give you more than a day a week or one hour a week. It basically puts the emphasis of the rehabilitation on the individual.

I find that if you're not determined to fight the stroke and fight the symptoms, I think you will be left in the dark. I think that's where the depression and all of the other mental issues that follow a stroke occurs, that it isn't easy. It's the hardest thing I've ever had to do, yeah.

I think one of the hardest things is when you go to the physiotherapist, they aren't asking you to do things that are comfortable and they're not asking you to do things that you would enjoy. I wouldn't do those activities outside of having had the stroke.

So no, but every week, you go back and you go back and you back, and every time you come back, you can see progress. I think for people who've had a stroke that don't do physiotherapy, one of the hardest things they do is they don't let the physiotherapy work.

But through the course of time, what you end up getting is a timeline where there's events. And I remember physically seeing things like drawing a circle on the wall, now, I couldn't make the circle connect. When you take the marker, you go around a big loop, there was no way for me to put the marker back to the beginning. But throughout the times of doing physiotherapy and then, we'd come back and do these benchmark tests, you can start to see with your own eyes what actually is happening before you.

Like I said, I think physiotherapy and occupational therapy have been tried and true for me, but I never really had any other treatments other than the guy at the gym.

Chris: It sounds again, it comes back to the people you had working with you, like the health professionals, like your local doctor and your other team who you could trust. Is that part of it for you, is knowing you can rely on certain people or do you think there are other ways that you can assess whether a treatment is evidence based?

Dan: Look, I think all medical anything comes through science and I think of it ... Norman Doidge if you read his book, which was introduced to me by a neighbour, his neuroplasticity was laughed at when he brought it up.

But there is things that are evidence based, but I think it has to be integrated through a general practice or through the Stroke Foundation and its positions that work parallel with the medical system, because I think there is a lot of people out there that are begging for other types of treatments and I think there's other people that are seeing that and they're seeing it as an opportunity to make money.

I'm very blessed. I feel that I've had the best care. If I had a stroke, I'd want to do it all over again the same way.

Chris: Right. On that basis, do you have any particular advice for other stroke survivors?

Dan: Yeah. I guess first thing is to understand that everybody's stroke is different. I've had hundreds of people ask me on the run, or in the communities where I live, "How'd you do it? How'd you get through? How'd you get so quickly back?" I have a lot of faith. I believed in my faith, but I also think that if you don't believe that you can get better, you just don't have the energy or the ambition to fight through the difficult moments.

Now again, everybody's strokes are different. I had purely physical loss. I didn't have cognitive or incontinence, or I didn't have any digestive issues, so I was very blessed that it wasn't all of the different things that could've been. A lot of the people that have come to me have had, I would say the majority of them have a problem with the memory. Again, it would be really hard to go and face through all of these steps of progress, but you can't remember how bad you were.

My advice to the people who are having a stroke or starting their stroke rehab journey is to contact and keep with the Stroke Foundation. Talk to people. I think communicating in a group forum like the Stroke Foundation has been paramount to meet other people, especially in outback Australia, because there isn't anyone else. Your GP is a nice guy, but he doesn't have time to be a counsellor.

I remember sitting at the waiting room for one of my routine check-ups and I said, "Man, there's got to be somewhere else to turn," and I looked up stroke survivor stories on Google and up came the national Stroke Foundation and hence, it started from there. We've felt obliged to help other people and did the run.

I'm always available. You can contact the Stroke Foundation if you'd like, but I'm very happy to help people through stroke. I really get a lot out of encouraging people to get through their stroke journey.

Chris: Brilliant. Thank you, Dan. I'm sure you have helped a lot of people there with your own experience. Thank you very much for taking the time to speak to us. I hope you keep up the running as well.

Dan: No worries. Thank you very much, Chris.

Chris: Cheers.

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Chris: Professor Tammy Hoffmann is a clinical epidemiologist from Bond University, who specialises in evidence-based practice. This is about making sure that health professionals look at the evidence and also that they discuss that evidence with their patients and share in making decisions about treatment.

Thank you for joining us, Tammy.

Tammy: My pleasure.

Chris: Now in the introduction there, I used the word evidence a few times. What do we actually mean when we say evidence?

Tammy: Yeah, so in this sense when we're talking about healthcare evidence, we're talking about evidence from research study. Evidence-based practice is where a health professional considers not just their clinical expertise and experience, and not just what's going on in the patient's life, but also what research studies tell us about the most effective care and that's an important source of information to also consider.

Chris: Why is that important?

Tammy: Because if we rely on things like anecdotes, like "It worked for my neighbour Sue and therefore it'll work for me," we know that's unreliable. And also, if we rely just on the experiences of others, it might be for example, a health professional says, "Well, the last three patients, this treatment worked for, therefore it'll work for you," has been shown time and time again to be not accurate.

So the only way that we can have reliable information to guide us in terms of what might be the most effective care, the most accurate test or the most effective treatment is to do various study designs and actually test in an empirical, in a scientific way actually put those things to the test.

Chris: What kind of research are we talking about, can you expand on what you mean by these different kinds of studies? Because when you said, say someone might say, "It worked for my last three patients," that to most people would sound like that is some sort of evidence, some of sort of research that had been done. How does formal research differ to that?

Tammy: Sure. When we're talking about treatments, there's a certain study design type that gives the most reliable evidence and that's something called a randomised trial. It means we take a group of people and we randomise them, so randomly allocate some of them to get the experimental treatment and some of them to get whatever the comparator is. It might be another treatment, it might just be usual care.

That way, if the two groups are fairly evenly matched at beginning of the trial, and then the trial goes on and one group gets the treatment and one group doesn't, when we measure whatever it is that we're measuring, it might be something like pain or quality of life or mobility or anything like that, if the group that got the treatment improves more than the group that didn't, that's one way we can be reasonably sure that they improve because of the treatment, rather than a whole other host of other factors which can make muddy the waters.

It could be that without having that comparison group, maybe they were going to get better anyway without the treatment. Maybe there's something else they did at the same time that helped them to get better. So by having a controlled trial, where we know what one group gets and what one group also gets and we compare the two in a fair way, that way we can be reasonably confident that it was the treatment making any difference, rather than anything else.

Chris: Can you tell me a little bit of then your work that you're doing with health professionals and helping them to use evidence-based practice?

Tammy: Sure. My work spans across nearly every aspect of evidence-based practice, right from teaching health professionals when they're at university, but also once they’ve graduated, what it is and why it's important. Historically, health professionals just relied on doing what they thought was best. The concept of evidence-based practice is a reasonably new one. It's been around about just over 20 years and so some of the older generation health professionals, it's still percolating through.

Some of my research is about teaching, the most effective way of actually teaching these skills, to new and experienced health professionals, helping them to find ways of quickly finding the evidence. There's thousands of new research studies coming out every week and no health professional has time to sit down and sift through all those to find the good quality ones that are relevant to their practice, so we teach them some of the most reliable sources and quick ways of searching. Also, how to check whether the research is good quality.

A lot of what is published—this is surprising to most people—is actually flawed and flawed in such a way that we can't actually believe its findings. It's very much finding a needle in a haystack. It's sifting through lots of the studies that we can't rely on and finding those good quality ones we can use, working out how to use them in practice.

And then the final step, which is a really important one, is how do we then work with patients and communicate the evidence in a way that can help them make informed decisions. My research covers pretty much all of those steps.

Chris: That is quite a bit. Now, it sounds like it certainly is a lot of challenge just for the health professionals themselves. How then do people going to see a health professional know that the person they're seeing is using this kind of approach, is using evidence in their practice?

Tammy: Good question. I think one of the most simple ways is just to ask. Any time when a health professional makes a recommendation, particularly something to do with getting a test or starting a treatment, is to actually ask them, "Can you tell me what the evidence is for that, for what you're suggesting?" A health professional who is following evidence-based practice should be able to tell you when it's based on this many studies have looked at this for example.

Also to point out that some... It's not every type of question that people have that we need research evidence for. Things like practical suggestions, or support information, we don't need research evidence for that. We're talking here about when we want to know what's the most accurate test, what's the most effective treatment.

It’s just worth realising not every question that a patient will have for a health professional need evidence behind it, but certainly some of them do.

Chris: Then it is a matter then to be able to discern when the evidence is required and whether, as you're saying, the evidence is strong enough. How can people do that? How can they tell whether the information they're receiving or what they're being told is sufficient?

Tammy: Yeah, there's no quick and easy way of doing this. As I said, first of all, asking a health professional, "What's the evidence for what you're suggesting?" is a good place to start.

There's three questions that we encourage people to ask the health professional, which is what are my options? And knowing that there's nearly always more than one option, even if one option is just to wait and watch and see what happens.

The second question is what are the possible benefits and harms of each of those options? And that's where the evidence should start coming in into the answers. We know this many people will be helped by this amount and this many people might be harmed. And also, how likely are those benefits and harms to happen to me?

If you're going to have a fairly comprehensive discussion with those questions as guiding points, you know that you've considered that the evidence is being considered during that conversation.

Chris: Now, we are though also living in the age of Doctor Google, as I think it's often referred to. Is it right for people to try and I guess come into their discussion with the health professional informed by things that they've read or looked up themselves?

Tammy: Yeah, certainly the internet is a wonderful source of health information, but it comes with all the cautions. Some of it is good and a lot of it is bad. It's about being able to filter out the good and the bad.

There's no quick and easy way of doing this. As a rule of thumb generally websites that are government, ones like .gov or .gov.au in Australia, or .org, tend to have more reliable health information than ones that have a commercial interest, the .coms.

There's some basic things you can look at. Who's behind the site? Who's funding the site? It might be a particular company or a product who's trying to sell something. Obviously, that's red flag. Where's the information come from? Are there any references or evidence citing the sources? Just because there are though, that doesn't guarantee that it will be good quality information, that it might be... Someone might have randomly just picked some references and popped them in there. It is worth taking a very sceptical, cautious eye at health information.

Then if in doubt, printing it out, taking it into your health professional and going through it with them. That's a thing that more and more health professionals these days are very used to doing, is actually saying, "Look yes, there's some evidence for what that website's suggesting. Would you like to talk about that further?" or "These three things here, no, that’s nothing that's got any research done. It's unlikely to help you." It absolutely is worth checking with somebody and not just taking everything you read at face value.

Chris: But it is that, as you were saying before, that shared approach, that collaboration between the patient and the health professional, of assessing the evidence and working out what's best for them.

Tammy: Yeah, absolutely. That's becoming more and more common, and it's an approach called shared decision making. Because for most things, as I said there are more than one option and it may be that one option suits a patient better for whatever reason. It might be to do with their circumstances and what's going on in their life at that time, or their preferences or their values.

For a patient to make an informed decision, they need to know all the options, the pros and cons of each of them, and then work together with their health professional, or their team of health professionals, to think what matters to me and what's the best thing for me to try at this point in time in my life.

Chris: Great. Do you have any other advice that you would give our stroke survivors there, if they are trying to make these decisions of what they can trust and what they can't trust?

Tammy: I think certainly being very wary of what you do read on the internet, particularly in forums and Facebook posts where it usually is anecdotal evidence, but as I said earlier, it's not... For support and practical suggestions and just sharing and all of that, that information is absolutely fine, but if it's medical advice about which treatment to go and get or what test you need, that's when you actually need to dig a bit deeper into, is there any evidence, is it supported on reputable health sites?

Some health sites have a system called Health On the Net code. Health On the Net is a not for profit organisation that gives a seal of approval if the information meets certain criteria. It can be worth checking whether it is a reputable website.

Then certainly, anything that you see that you're considering, even if it's something you think might not have implications, like complementary and alternative medicine or natural products, even still checking those, having that discussion with your health professionals and making sure you ask those questions about what's the evidence for this, is this right for me?

Chris: Fantastic. All right, that sounds like some good words to base the decisions on. Thank you very much for speaking for us again. That was Professor Tammy Hoffmann from Bond University.

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Chris: All right, just before we go on, I have with me here today Lynne from the Stroke Foundation, to talk about Stride4stroke, which is on throughout this November. Lynne, can you tell us, what is Stride4stroke?

Lynne: Hi, Chris. Stride4stroke is our annual fundraising campaign to raise much needed funds and awareness to fight stroke. The great bit about Stride4stroke is that anybody can take part no matter what their fitness level is. You can ride your bike, swim a few laps in the pool, you can run the marathon. All that matters is that people take the challenge to get moving or helping us in our vision to fight stroke.

Chris: Why is it good for people to get moving and to be part of something like this?

Lynne: We chose to make our major fund raising campaign a physical challenge for a reason. We know that too many Australians aren't doing enough physical activity and it's literally killing us. Not moving puts your health at risk and combined with things like smoking, poor diet and high blood pressure, it really does put you at serious risk of stroke. So taking part in Stride4stroke is a great way to keep active while raising money for such an important cause.

We know that more than 450,000 stroke survivors are living within our community and every dollar raised makes a difference in how we can support them. There are just too many families that are impacted by stroke and really doing it tough. Since 2014, Stride4stroke has raised more than $265,000 to support the stroke community.

Chris: Great, so how can people get involved in it then?

Lynne: It's really easy to register. We're asking people to go to www.stride4stroke.org.au and “stride 4 stroke” is the number 4. You register and then you get your free event kit sent out. Once you've registered, you will get your event kit, but you can also then go online and set up your fundraising page, which you can personalise and that helps you track your progress through MyFitness app, or you can do it on you FitBit or various other technology. Then you can ask your friends and family to support you in your challenge.

Another great way to do it just to make it a team effort, you can get your friends and family or even your work colleagues involved and ask them to join your kit team. That way you can fundraise together and it really helps keep each other motivated and striding those kilometres through November.

Chris: Brilliant. Thank you very much, Lynne. That is stride4stroke.org.au. Thank you, Lynne. Keep striding.

Lynne: Thank you very much.

Chris: Finally today, we have Jude Czerenkowski. Jude is a social worker and also the national manager of Stroke Connect for the Stroke Foundation. Thanks for coming in, Jude.

Jude: Thanks for having me.

Chris: Now, why is it that people are seeking out all these different treatments when they have a health condition like stroke?

Jude: I think basically this is the job of recovery. Stroke impact is really individual and as Dan said earlier, everyone's stroke is different. So the kind of impacts that you're left with and then the level and pace of your recovery is also very individual. Really, there is no one pathway for stroke recovery, no one treatment, no one therapy, and not even really no one health professional that you can go to for your stroke recovery.

Then add to that, needs change as your recovery progresses and that can lead you to exploring different things. Also, some impacts can be very difficult or slow to improve and that will definitely lead you to try different things throughout your recovery.

Chris: Do you think people are particularly vulnerable under these circumstances?

Jude: I think sometimes yes. Anyone's that's experiencing a health condition, particularly a long-term health condition like stroke, can be vulnerable and we can all be vulnerable in different ways at different times. Stroke survivors are a bit up against it I think when they first have their stroke, because no one really knows much about a stroke before they or a loved one has one. Yet having good information and having some expertise about stroke and stroke recovery is really important as you go through that work that Tammy was talking about, about weighing up your options.

Stroke survivors always talk about, they often talk about needing to go from beginner to expert really, and needing to do that quite quickly to start really taking control of their recovery and making good decisions, but unfortunately, that actually does take time. 

We might be vulnerable because we're still developing the knowledge base and expertise that we need. But beyond that, I think also life may be very different after a stroke and the feelings that come up because of that can really have an influence on our decision making.

It's very human to look, when you're experiencing any kind of hardship, to look at it as a quest, to expect to be rewarded through your efforts in your recovery with success, to find it frustrating and difficult when that doesn't happen and also, to be pretty persistent in finding the thing that will make a difference to our individual situation. Human beings long for the miracle. It's very natural, absolutely natural.

Sometimes, part of that can be that our emotional responses can make us vulnerable. I think that the answer is not always to try and be perfectly rational—though for some people that's their natural style and that's what you see them doing—but rather I think what's probably most important is to really be aware of how your emotions might be impacting you as you travel through your recovery, and consider it as a factor in how you make decisions about pursuing particular therapies and treatments.

Chris: Because as we've heard, there are people who are trying to make money out of, exploit these situations of vulnerable people and, there's maybe the quacks or charlatans that people should all watch out for. It can also be well-meaning friends and family who will be giving advice and trying to help someone. How do you cope with that?

Jude: I think we all give each other advice all the time and some of that advice is absolutely spot on, like Dan was talking about his neighbour putting him onto Norman Doidge's book and the impact that that had on him. But getting advice from everyone that you meet is definitely part of the territory when you have a long-term health condition. You will constantly get asked the question, "Have you tried, have you tried?" For the people I think that are close to you, your close friends and family, they will also need to go through a process of becoming expert and starting to understand what the evidence is around stroke recovery. For those people, it's really about bringing them along the journey with you. Take the information that you're gathering and use it to educate them so that they can actually be helpful to you and discuss things in a helpful way.

But you will also I think need a standard response for the random suggestions that closes that conversation because it actually can get very annoying. "I haven't tried that, but I have a really good recovery plan in place and I've got a great team. Thanks for your concern though."

Chris: Right. That's a good script. People should get it printed on a card perhaps. What are your other top tips that you have for stroke survivors, for looking for evidence-based treatments and health professionals?

Jude: I think the most important thing is actually to develop your own expertise and your own knowledge base first. If you understand the reasons behind the impairments, the processes that you're dealing with, you can make better decisions about treatments and therapies. You're less likely to think that something without a great deal of evidence is going to be the magic pill, if you actually can understand what are the underlying reasons why things are the way they are.

Use the internet in a smart way. I think that ill-informed views and people who are really just after your money, they've been around since time began, but the internet has really ramped those things up. But, flip-side is that you can use the internet to do your own research and develop your own knowledge, so that as Tammy was saying, you go into your consultations with your doctor and other professionals really well informed.

I always start with the Better Health Channel. It's a Victorian website, but it's very evidence-based, it's very well written. Start with the government and the reputable organisations' websites. That's a really good place to start.

I think the other thing to think about when you start weighing up your options is that, recovery can be hard work so, there is definitely some weighing up that you need to do about when you're considering a therapy or treatment, how much time am I going to have to put into this? How much is it going to cost? The higher those things start to go, the more evidence you want to see before you start committing to that particular kind of therapy. I think that's quite important.

Also, we always say on StrokeLine really, as everyone does, if it sounds too good to be true, it probably is. But another good thing to keep in mind is cost. I noticed with a lot of the things where there's not a lot of evidence behind them, that sometimes they're actually too expensive to be good and that's a bit of a warning sign as well. Sometimes, the ingredients or the components of the therapy are quite mysterious and sometimes also, they're quite commonly available, but the price is high. There's only one place to get it from. We tend to think yeah, that's a good indication to be careful. As humans, we do tend to associate cost with quality as well, so you need to be careful about that one.

Finally, I think another thing that we often talk to people about on StrokeLine is really, as you progress through recovery and you're working through different therapies and treatments, just keep in mind how you're feeling and how your quality of life is going.

There is definitely a point where you can find yourself pushing too hard and generally, you'll find that this starts to make you feel pretty terrible. Make sure, yes, work your recovery, but make sure you're also making sure that you're thinking about how your recovery is making you feel as you go along.

Chris: Very good. Now as Jude mentioned there, you can call Stroke Line. You can talk to people on Stroke Line. We have health professionals there who can answer your questions about various treatments or anything else you need to know in your stroke recovery. You can call Stroke Line on 1 800 787 653 or 1 800 STROKE.

Now, that is all we have time for today. If you like what you've heard, we're going to ask you again, you can help us out by giving us a good rating and a review on iTunes or whichever other podcast service you're using.

Thank you once again to our guests, Dan Englund, Tammy Hoffman, and Jude Czerenkowski.

Announcer: At Allergan, we know every stroke is different and so is every recovery. After stroke, many people have muscle weakness and loss of movement, but you might also be experiencing tight muscles or stiffness in your arms, fingers, or legs. It's called spasticity. You might have muscle spasms or uncontrollable jerky movements in your arms or legs, changes in your posture, or unusual limb positions, and it can cost pain. It can be treated though.

Physiotherapy or occupational therapy can help you adapt and improve your movement. There are other possibilities too, such as injections with botulinum toxin type A, electrical stimulation of the muscles, electromyograph or EMG biofeedback, and muscle relaxing medication. What is important is to start your rehabilitation as soon as possible after a stroke and to discuss your goals and progress with your rehabilitation team at every stage. Allergan is proud to bring you this EnableMe podcast.

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 the series at our website enableme.org.au.

It's free to sign up and you can talk with thousands of other stroke survivors, carers and supporters. We also have health professionals from Stroke Line who can answer your questions and give evidence-based advice.

The advice given here is general in nature and you should discuss you own personal needs and circumstances with your health professional. If you would like to suggest a topic or provide feedback, contact us via the website enableme.org.au.

The music in this podcast is “Signs” by stroke survivor Antonio Iannella and his band, The Lion Tamers. It was recorded at Antonio's studio, which you can find out more about at www.studiofour99.org.au

This EnableMe podcast series is produced by the national Stroke Foundation in Australia, with the support of Allergan.

Where is the evidence?

Episode 6, 17 November 2016

Read the transcript below

The internet is full of health information, and there are so many people offering treatments for stroke, that it can be hard to know what to trust. Especially when you're well and in need of help, you can be very vulnerable to misinformation. So how do you find information that's based on real evidence, and how do you know someone claiming to be a health professional is genuine?

We're going to try to find out how to find evidence-based information and how to sort the good from the bad.

Our guests for this episode are:

  • Professor Tammy Hoffmann, a clinical epidemiologist from Bond University who specialises in evidence-based practice.
  • Dan Englund, who had a stroke at 38-years-old but who has recovered enough to complete a 1000-km run.
  • Jude Czerenkowski, a social worker and national manager of Stroke Connect for the Stroke Foundation.

Online chat
On Thursday 19 January 2017 we held an online chat with the guests from this podcast about finding evidence-based information. Download a transcript of the chat.

Podcast transcript

Download the 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.

You can join the conversation at enableme.org.au.

This series is presented by Australia's national Stroke Foundation and sponsored by Allergan.

Chris: The media and especially the internet are full of health information, and there are so many people out there offering treatments for stroke. It can be very hard to know what to trust. And especially when you have a condition like stroke and you're not well and in need of help, you can be very vulnerable to misinformation.

How do you find information that's based on real evidence and how do you know someone claiming to be a health professional is genuine? We're going to try to find out how to find evidence-based information and how to sort the good from the bad.

We'll be speaking to clinical epidemiologist Tammy Hoffmann about evidence-based practice, and to social worker Jude Czerenkowski abut the pitfalls of looking for treatments and how to avoid them.

First though, we have stroke survivor Dan Englund. Dan's life changed when he had a stroke at only 38 years old, but he's persisted with his rehabilitation and to show just how much he's achieved, in 2014 he ran the distance of 1,000 kilometres. He did that to raise awareness and to reduce the stigma of stroke. Thank you for joining us, Dan.

Dan: You're welcome. Thanks, Chris.

Chris: Now, I'll get onto your run shortly, but first, could you tell us your stroke story?

Dan: It was May 16th 2011. Probably like everyone else, you would've never really paid much attention to a stroke, but I was getting ready for work on a Monday morning and I heard a humming in my left ear and I said to Tania, "What does vertigo feel like?" Because I was starting to hear something as well as feel a bit dizzy. She proceeded to say, "Why don't you go lie down?" which I guess most people would do, just sleep it off.

As I went down to the bedroom, I thought, "No, I'll just go check an email," and as I went to the office desk, turned the computer on, felt my left arm drop to my side. When I felt it, I could just see it drop down to the lap. I thought, "That's strange," and when I looked at it, the left hand was all curled in and when I went to push the chair back, only my right leg moved. The left leg didn't want to activate, and I thought, "Oh, no." Anyway, we were in a three-sided office desk area and my wife Tania couldn't hear me, but I yelled out to her and probably it was two minutes before she came into the room. Our rule in the house is if you need something, you go and get them. You don't yell across the house. She comes barrelling in and says, "What's wrong with you? Why don't you get off?" I said, "Something's really wrong. I can't feel my left side." She said, "Really?" She looked at me and she knew it was serious, and she said, "I think you're having a stroke." Oddly enough, it was the national Stroke Foundation's spam email that brought her attention to this, because it was probably three months prior, she had seen the FAST message and yeah, we called 000 and that was the start of the stroke journey, I guess.

Chris: Right. Now, speaking of journey's though, as I mentioned you've been able to run 1,000 kilometres. First of all, I just want to ask how long did it take you to run that distance?

Dan: Well it was... We did it in 35 days, but it was actually 20—I have to get this right—about 25 days of running. We had some time off in between, just to recover and have some time down with the family, but yeah. Break it into little intervals, between 40 and 50 kilometres a day and, yeah, over the month of August. It was actually 2012.

Chris: Okay, 2012, that was about a year after your stroke then, was it?

Dan: Yes, sir.

Chris: It wasn't that long then for you to get up to that level of recovery, I guess. Now, how did you manage to get to that point?

Dan: Physiotherapy, physiotherapy, physiotherapy. I'm a firm believer in the conventional treatment with physios and occupational therapy.

Hard work, and I would say a very good team, between the stroke unit starting rehab immediately—I think it wasn't even the third day, they had me up on my wheelchair and sitting up and down and they just started immediately. I think that was the best thing that could've happened was to get me back into the movements as soon as possible.

Chris: You had a very good team working with you there, but were there a lot of other people out in the community or that you would get information from who were suggesting other different treatments to try?

Dan: Yeah. Look, we lived in the outback, a long ways from anything and I was getting a little down because the outback only ... Even with a private health insurance plan, I could still only see a physiotherapist twice, no once a week, and it was about a one-hour session once a week, which leaves you however many hours the rest of the week practising, but I felt there had to be something else.

I don't like to shed negative light on things, but there was a gentleman that was running a gym and he was trying to push a theory, and it was really… It was my wife Tania wanted anything we could for therapy, so I went along to this gentleman's gym—and I guess I can tell you, but I don't really feel like smearing names—he charged me $300 for a listening session and all he did was push his own theory and then tried to force me to sign up at a gym. Now, I found that really confronting that there was someone who was going to force you to join a gym for 12 months when you've had a stroke and really, I wasn't even able to do anything at the gym other than physiotherapy.

Now, I went to my doctor and I asked him what he recommended and the best advice that came from him was, "What you've had was a medical event, you need a medical treatment and it doesn't come from a gymnasium." Along with the physiotherapist, she said, "Do I believe in 12 months from now that you'd be better off going to the gym program as well as physiotherapy? No." So I just stuck with my physiotherapy.

Chris: Do other factors come into it as well? Like you said that the cost commitment and the time commitment they're asking from you, is that part of deciding whether something is worth trying?

Dan: When you have a stroke, you really don't have much choice. It's either public physiotherapy through the regional hospital, or you have a private practice, which at the time was so overburdened with everything else between sports and work injuries that they can't just simply give you more than a day a week or one hour a week. It basically puts the emphasis of the rehabilitation on the individual.

I find that if you're not determined to fight the stroke and fight the symptoms, I think you will be left in the dark. I think that's where the depression and all of the other mental issues that follow a stroke occurs, that it isn't easy. It's the hardest thing I've ever had to do, yeah.

I think one of the hardest things is when you go to the physiotherapist, they aren't asking you to do things that are comfortable and they're not asking you to do things that you would enjoy. I wouldn't do those activities outside of having had the stroke.

So no, but every week, you go back and you go back and you back, and every time you come back, you can see progress. I think for people who've had a stroke that don't do physiotherapy, one of the hardest things they do is they don't let the physiotherapy work.

But through the course of time, what you end up getting is a timeline where there's events. And I remember physically seeing things like drawing a circle on the wall, now, I couldn't make the circle connect. When you take the marker, you go around a big loop, there was no way for me to put the marker back to the beginning. But throughout the times of doing physiotherapy and then, we'd come back and do these benchmark tests, you can start to see with your own eyes what actually is happening before you.

Like I said, I think physiotherapy and occupational therapy have been tried and true for me, but I never really had any other treatments other than the guy at the gym.

Chris: It sounds again, it comes back to the people you had working with you, like the health professionals, like your local doctor and your other team who you could trust. Is that part of it for you, is knowing you can rely on certain people or do you think there are other ways that you can assess whether a treatment is evidence based?

Dan: Look, I think all medical anything comes through science and I think of it ... Norman Doidge if you read his book, which was introduced to me by a neighbour, his neuroplasticity was laughed at when he brought it up.

But there is things that are evidence based, but I think it has to be integrated through a general practice or through the Stroke Foundation and its positions that work parallel with the medical system, because I think there is a lot of people out there that are begging for other types of treatments and I think there's other people that are seeing that and they're seeing it as an opportunity to make money.

I'm very blessed. I feel that I've had the best care. If I had a stroke, I'd want to do it all over again the same way.

Chris: Right. On that basis, do you have any particular advice for other stroke survivors?

Dan: Yeah. I guess first thing is to understand that everybody's stroke is different. I've had hundreds of people ask me on the run, or in the communities where I live, "How'd you do it? How'd you get through? How'd you get so quickly back?" I have a lot of faith. I believed in my faith, but I also think that if you don't believe that you can get better, you just don't have the energy or the ambition to fight through the difficult moments.

Now again, everybody's strokes are different. I had purely physical loss. I didn't have cognitive or incontinence, or I didn't have any digestive issues, so I was very blessed that it wasn't all of the different things that could've been. A lot of the people that have come to me have had, I would say the majority of them have a problem with the memory. Again, it would be really hard to go and face through all of these steps of progress, but you can't remember how bad you were.

My advice to the people who are having a stroke or starting their stroke rehab journey is to contact and keep with the Stroke Foundation. Talk to people. I think communicating in a group forum like the Stroke Foundation has been paramount to meet other people, especially in outback Australia, because there isn't anyone else. Your GP is a nice guy, but he doesn't have time to be a counsellor.

I remember sitting at the waiting room for one of my routine check-ups and I said, "Man, there's got to be somewhere else to turn," and I looked up stroke survivor stories on Google and up came the national Stroke Foundation and hence, it started from there. We've felt obliged to help other people and did the run.

I'm always available. You can contact the Stroke Foundation if you'd like, but I'm very happy to help people through stroke. I really get a lot out of encouraging people to get through their stroke journey.

Chris: Brilliant. Thank you, Dan. I'm sure you have helped a lot of people there with your own experience. Thank you very much for taking the time to speak to us. I hope you keep up the running as well.

Dan: No worries. Thank you very much, Chris.

Chris: Cheers.

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Chris: Professor Tammy Hoffmann is a clinical epidemiologist from Bond University, who specialises in evidence-based practice. This is about making sure that health professionals look at the evidence and also that they discuss that evidence with their patients and share in making decisions about treatment.

Thank you for joining us, Tammy.

Tammy: My pleasure.

Chris: Now in the introduction there, I used the word evidence a few times. What do we actually mean when we say evidence?

Tammy: Yeah, so in this sense when we're talking about healthcare evidence, we're talking about evidence from research study. Evidence-based practice is where a health professional considers not just their clinical expertise and experience, and not just what's going on in the patient's life, but also what research studies tell us about the most effective care and that's an important source of information to also consider.

Chris: Why is that important?

Tammy: Because if we rely on things like anecdotes, like "It worked for my neighbour Sue and therefore it'll work for me," we know that's unreliable. And also, if we rely just on the experiences of others, it might be for example, a health professional says, "Well, the last three patients, this treatment worked for, therefore it'll work for you," has been shown time and time again to be not accurate.

So the only way that we can have reliable information to guide us in terms of what might be the most effective care, the most accurate test or the most effective treatment is to do various study designs and actually test in an empirical, in a scientific way actually put those things to the test.

Chris: What kind of research are we talking about, can you expand on what you mean by these different kinds of studies? Because when you said, say someone might say, "It worked for my last three patients," that to most people would sound like that is some sort of evidence, some of sort of research that had been done. How does formal research differ to that?

Tammy: Sure. When we're talking about treatments, there's a certain study design type that gives the most reliable evidence and that's something called a randomised trial. It means we take a group of people and we randomise them, so randomly allocate some of them to get the experimental treatment and some of them to get whatever the comparator is. It might be another treatment, it might just be usual care.

That way, if the two groups are fairly evenly matched at beginning of the trial, and then the trial goes on and one group gets the treatment and one group doesn't, when we measure whatever it is that we're measuring, it might be something like pain or quality of life or mobility or anything like that, if the group that got the treatment improves more than the group that didn't, that's one way we can be reasonably sure that they improve because of the treatment, rather than a whole other host of other factors which can make muddy the waters.

It could be that without having that comparison group, maybe they were going to get better anyway without the treatment. Maybe there's something else they did at the same time that helped them to get better. So by having a controlled trial, where we know what one group gets and what one group also gets and we compare the two in a fair way, that way we can be reasonably confident that it was the treatment making any difference, rather than anything else.

Chris: Can you tell me a little bit of then your work that you're doing with health professionals and helping them to use evidence-based practice?

Tammy: Sure. My work spans across nearly every aspect of evidence-based practice, right from teaching health professionals when they're at university, but also once they’ve graduated, what it is and why it's important. Historically, health professionals just relied on doing what they thought was best. The concept of evidence-based practice is a reasonably new one. It's been around about just over 20 years and so some of the older generation health professionals, it's still percolating through.

Some of my research is about teaching, the most effective way of actually teaching these skills, to new and experienced health professionals, helping them to find ways of quickly finding the evidence. There's thousands of new research studies coming out every week and no health professional has time to sit down and sift through all those to find the good quality ones that are relevant to their practice, so we teach them some of the most reliable sources and quick ways of searching. Also, how to check whether the research is good quality.

A lot of what is published—this is surprising to most people—is actually flawed and flawed in such a way that we can't actually believe its findings. It's very much finding a needle in a haystack. It's sifting through lots of the studies that we can't rely on and finding those good quality ones we can use, working out how to use them in practice.

And then the final step, which is a really important one, is how do we then work with patients and communicate the evidence in a way that can help them make informed decisions. My research covers pretty much all of those steps.

Chris: That is quite a bit. Now, it sounds like it certainly is a lot of challenge just for the health professionals themselves. How then do people going to see a health professional know that the person they're seeing is using this kind of approach, is using evidence in their practice?

Tammy: Good question. I think one of the most simple ways is just to ask. Any time when a health professional makes a recommendation, particularly something to do with getting a test or starting a treatment, is to actually ask them, "Can you tell me what the evidence is for that, for what you're suggesting?" A health professional who is following evidence-based practice should be able to tell you when it's based on this many studies have looked at this for example.

Also to point out that some... It's not every type of question that people have that we need research evidence for. Things like practical suggestions, or support information, we don't need research evidence for that. We're talking here about when we want to know what's the most accurate test, what's the most effective treatment.

It’s just worth realising not every question that a patient will have for a health professional need evidence behind it, but certainly some of them do.

Chris: Then it is a matter then to be able to discern when the evidence is required and whether, as you're saying, the evidence is strong enough. How can people do that? How can they tell whether the information they're receiving or what they're being told is sufficient?

Tammy: Yeah, there's no quick and easy way of doing this. As I said, first of all, asking a health professional, "What's the evidence for what you're suggesting?" is a good place to start.

There's three questions that we encourage people to ask the health professional, which is what are my options? And knowing that there's nearly always more than one option, even if one option is just to wait and watch and see what happens.

The second question is what are the possible benefits and harms of each of those options? And that's where the evidence should start coming in into the answers. We know this many people will be helped by this amount and this many people might be harmed. And also, how likely are those benefits and harms to happen to me?

If you're going to have a fairly comprehensive discussion with those questions as guiding points, you know that you've considered that the evidence is being considered during that conversation.

Chris: Now, we are though also living in the age of Doctor Google, as I think it's often referred to. Is it right for people to try and I guess come into their discussion with the health professional informed by things that they've read or looked up themselves?

Tammy: Yeah, certainly the internet is a wonderful source of health information, but it comes with all the cautions. Some of it is good and a lot of it is bad. It's about being able to filter out the good and the bad.

There's no quick and easy way of doing this. As a rule of thumb generally websites that are government, ones like .gov or .gov.au in Australia, or .org, tend to have more reliable health information than ones that have a commercial interest, the .coms.

There's some basic things you can look at. Who's behind the site? Who's funding the site? It might be a particular company or a product who's trying to sell something. Obviously, that's red flag. Where's the information come from? Are there any references or evidence citing the sources? Just because there are though, that doesn't guarantee that it will be good quality information, that it might be... Someone might have randomly just picked some references and popped them in there. It is worth taking a very sceptical, cautious eye at health information.

Then if in doubt, printing it out, taking it into your health professional and going through it with them. That's a thing that more and more health professionals these days are very used to doing, is actually saying, "Look yes, there's some evidence for what that website's suggesting. Would you like to talk about that further?" or "These three things here, no, that’s nothing that's got any research done. It's unlikely to help you." It absolutely is worth checking with somebody and not just taking everything you read at face value.

Chris: But it is that, as you were saying before, that shared approach, that collaboration between the patient and the health professional, of assessing the evidence and working out what's best for them.

Tammy: Yeah, absolutely. That's becoming more and more common, and it's an approach called shared decision making. Because for most things, as I said there are more than one option and it may be that one option suits a patient better for whatever reason. It might be to do with their circumstances and what's going on in their life at that time, or their preferences or their values.

For a patient to make an informed decision, they need to know all the options, the pros and cons of each of them, and then work together with their health professional, or their team of health professionals, to think what matters to me and what's the best thing for me to try at this point in time in my life.

Chris: Great. Do you have any other advice that you would give our stroke survivors there, if they are trying to make these decisions of what they can trust and what they can't trust?

Tammy: I think certainly being very wary of what you do read on the internet, particularly in forums and Facebook posts where it usually is anecdotal evidence, but as I said earlier, it's not... For support and practical suggestions and just sharing and all of that, that information is absolutely fine, but if it's medical advice about which treatment to go and get or what test you need, that's when you actually need to dig a bit deeper into, is there any evidence, is it supported on reputable health sites?

Some health sites have a system called Health On the Net code. Health On the Net is a not for profit organisation that gives a seal of approval if the information meets certain criteria. It can be worth checking whether it is a reputable website.

Then certainly, anything that you see that you're considering, even if it's something you think might not have implications, like complementary and alternative medicine or natural products, even still checking those, having that discussion with your health professionals and making sure you ask those questions about what's the evidence for this, is this right for me?

Chris: Fantastic. All right, that sounds like some good words to base the decisions on. Thank you very much for speaking for us again. That was Professor Tammy Hoffmann from Bond University.

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Chris: All right, just before we go on, I have with me here today Lynne from the Stroke Foundation, to talk about Stride4stroke, which is on throughout this November. Lynne, can you tell us, what is Stride4stroke?

Lynne: Hi, Chris. Stride4stroke is our annual fundraising campaign to raise much needed funds and awareness to fight stroke. The great bit about Stride4stroke is that anybody can take part no matter what their fitness level is. You can ride your bike, swim a few laps in the pool, you can run the marathon. All that matters is that people take the challenge to get moving or helping us in our vision to fight stroke.

Chris: Why is it good for people to get moving and to be part of something like this?

Lynne: We chose to make our major fund raising campaign a physical challenge for a reason. We know that too many Australians aren't doing enough physical activity and it's literally killing us. Not moving puts your health at risk and combined with things like smoking, poor diet and high blood pressure, it really does put you at serious risk of stroke. So taking part in Stride4stroke is a great way to keep active while raising money for such an important cause.

We know that more than 450,000 stroke survivors are living within our community and every dollar raised makes a difference in how we can support them. There are just too many families that are impacted by stroke and really doing it tough. Since 2014, Stride4stroke has raised more than $265,000 to support the stroke community.

Chris: Great, so how can people get involved in it then?

Lynne: It's really easy to register. We're asking people to go to www.stride4stroke.org.au and “stride 4 stroke” is the number 4. You register and then you get your free event kit sent out. Once you've registered, you will get your event kit, but you can also then go online and set up your fundraising page, which you can personalise and that helps you track your progress through MyFitness app, or you can do it on you FitBit or various other technology. Then you can ask your friends and family to support you in your challenge.

Another great way to do it just to make it a team effort, you can get your friends and family or even your work colleagues involved and ask them to join your kit team. That way you can fundraise together and it really helps keep each other motivated and striding those kilometres through November.

Chris: Brilliant. Thank you very much, Lynne. That is stride4stroke.org.au. Thank you, Lynne. Keep striding.

Lynne: Thank you very much.

Chris: Finally today, we have Jude Czerenkowski. Jude is a social worker and also the national manager of Stroke Connect for the Stroke Foundation. Thanks for coming in, Jude.

Jude: Thanks for having me.

Chris: Now, why is it that people are seeking out all these different treatments when they have a health condition like stroke?

Jude: I think basically this is the job of recovery. Stroke impact is really individual and as Dan said earlier, everyone's stroke is different. So the kind of impacts that you're left with and then the level and pace of your recovery is also very individual. Really, there is no one pathway for stroke recovery, no one treatment, no one therapy, and not even really no one health professional that you can go to for your stroke recovery.

Then add to that, needs change as your recovery progresses and that can lead you to exploring different things. Also, some impacts can be very difficult or slow to improve and that will definitely lead you to try different things throughout your recovery.

Chris: Do you think people are particularly vulnerable under these circumstances?

Jude: I think sometimes yes. Anyone's that's experiencing a health condition, particularly a long-term health condition like stroke, can be vulnerable and we can all be vulnerable in different ways at different times. Stroke survivors are a bit up against it I think when they first have their stroke, because no one really knows much about a stroke before they or a loved one has one. Yet having good information and having some expertise about stroke and stroke recovery is really important as you go through that work that Tammy was talking about, about weighing up your options.

Stroke survivors always talk about, they often talk about needing to go from beginner to expert really, and needing to do that quite quickly to start really taking control of their recovery and making good decisions, but unfortunately, that actually does take time. 

We might be vulnerable because we're still developing the knowledge base and expertise that we need. But beyond that, I think also life may be very different after a stroke and the feelings that come up because of that can really have an influence on our decision making.

It's very human to look, when you're experiencing any kind of hardship, to look at it as a quest, to expect to be rewarded through your efforts in your recovery with success, to find it frustrating and difficult when that doesn't happen and also, to be pretty persistent in finding the thing that will make a difference to our individual situation. Human beings long for the miracle. It's very natural, absolutely natural.

Sometimes, part of that can be that our emotional responses can make us vulnerable. I think that the answer is not always to try and be perfectly rational—though for some people that's their natural style and that's what you see them doing—but rather I think what's probably most important is to really be aware of how your emotions might be impacting you as you travel through your recovery, and consider it as a factor in how you make decisions about pursuing particular therapies and treatments.

Chris: Because as we've heard, there are people who are trying to make money out of, exploit these situations of vulnerable people and, there's maybe the quacks or charlatans that people should all watch out for. It can also be well-meaning friends and family who will be giving advice and trying to help someone. How do you cope with that?

Jude: I think we all give each other advice all the time and some of that advice is absolutely spot on, like Dan was talking about his neighbour putting him onto Norman Doidge's book and the impact that that had on him. But getting advice from everyone that you meet is definitely part of the territory when you have a long-term health condition. You will constantly get asked the question, "Have you tried, have you tried?" For the people I think that are close to you, your close friends and family, they will also need to go through a process of becoming expert and starting to understand what the evidence is around stroke recovery. For those people, it's really about bringing them along the journey with you. Take the information that you're gathering and use it to educate them so that they can actually be helpful to you and discuss things in a helpful way.

But you will also I think need a standard response for the random suggestions that closes that conversation because it actually can get very annoying. "I haven't tried that, but I have a really good recovery plan in place and I've got a great team. Thanks for your concern though."

Chris: Right. That's a good script. People should get it printed on a card perhaps. What are your other top tips that you have for stroke survivors, for looking for evidence-based treatments and health professionals?

Jude: I think the most important thing is actually to develop your own expertise and your own knowledge base first. If you understand the reasons behind the impairments, the processes that you're dealing with, you can make better decisions about treatments and therapies. You're less likely to think that something without a great deal of evidence is going to be the magic pill, if you actually can understand what are the underlying reasons why things are the way they are.

Use the internet in a smart way. I think that ill-informed views and people who are really just after your money, they've been around since time began, but the internet has really ramped those things up. But, flip-side is that you can use the internet to do your own research and develop your own knowledge, so that as Tammy was saying, you go into your consultations with your doctor and other professionals really well informed.

I always start with the Better Health Channel. It's a Victorian website, but it's very evidence-based, it's very well written. Start with the government and the reputable organisations' websites. That's a really good place to start.

I think the other thing to think about when you start weighing up your options is that, recovery can be hard work so, there is definitely some weighing up that you need to do about when you're considering a therapy or treatment, how much time am I going to have to put into this? How much is it going to cost? The higher those things start to go, the more evidence you want to see before you start committing to that particular kind of therapy. I think that's quite important.

Also, we always say on StrokeLine really, as everyone does, if it sounds too good to be true, it probably is. But another good thing to keep in mind is cost. I noticed with a lot of the things where there's not a lot of evidence behind them, that sometimes they're actually too expensive to be good and that's a bit of a warning sign as well. Sometimes, the ingredients or the components of the therapy are quite mysterious and sometimes also, they're quite commonly available, but the price is high. There's only one place to get it from. We tend to think yeah, that's a good indication to be careful. As humans, we do tend to associate cost with quality as well, so you need to be careful about that one.

Finally, I think another thing that we often talk to people about on StrokeLine is really, as you progress through recovery and you're working through different therapies and treatments, just keep in mind how you're feeling and how your quality of life is going.

There is definitely a point where you can find yourself pushing too hard and generally, you'll find that this starts to make you feel pretty terrible. Make sure, yes, work your recovery, but make sure you're also making sure that you're thinking about how your recovery is making you feel as you go along.

Chris: Very good. Now as Jude mentioned there, you can call Stroke Line. You can talk to people on Stroke Line. We have health professionals there who can answer your questions about various treatments or anything else you need to know in your stroke recovery. You can call Stroke Line on 1 800 787 653 or 1 800 STROKE.

Now, that is all we have time for today. If you like what you've heard, we're going to ask you again, you can help us out by giving us a good rating and a review on iTunes or whichever other podcast service you're using.

Thank you once again to our guests, Dan Englund, Tammy Hoffman, and Jude Czerenkowski.

Announcer: At Allergan, we know every stroke is different and so is every recovery. After stroke, many people have muscle weakness and loss of movement, but you might also be experiencing tight muscles or stiffness in your arms, fingers, or legs. It's called spasticity. You might have muscle spasms or uncontrollable jerky movements in your arms or legs, changes in your posture, or unusual limb positions, and it can cost pain. It can be treated though.

Physiotherapy or occupational therapy can help you adapt and improve your movement. There are other possibilities too, such as injections with botulinum toxin type A, electrical stimulation of the muscles, electromyograph or EMG biofeedback, and muscle relaxing medication. What is important is to start your rehabilitation as soon as possible after a stroke and to discuss your goals and progress with your rehabilitation team at every stage. Allergan is proud to bring you this EnableMe podcast.

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 the series at our website enableme.org.au.

It's free to sign up and you can talk with thousands of other stroke survivors, carers and supporters. We also have health professionals from Stroke Line who can answer your questions and give evidence-based advice.

The advice given here is general in nature and you should discuss you own personal needs and circumstances with your health professional. If you would like to suggest a topic or provide feedback, contact us via the website enableme.org.au.

The music in this podcast is “Signs” by stroke survivor Antonio Iannella and his band, The Lion Tamers. It was recorded at Antonio's studio, which you can find out more about at www.studiofour99.org.au

This EnableMe podcast series is produced by the national Stroke Foundation in Australia, with the support of Allergan.