enableme online chat transcript: Where is the evidence?

Chris Lassig
Hello everybody, the chat will start in 5 minutes so get your questions ready.
Diana
Thanks Chris
Chris Lassig
Hi everybody, we're underway and live! For the next 45 minutes we have clinical epidemiologist Professor Tammy Hoffmann answering your questions. Social worker Jude Czerenkowski will also be joining us shortly.
Tammy
Hi everyone
Chris Lassig
One quick request with the conversation: so that we can follow who's talking to whom, please mention the name of the person you're talking to when replying.
Jude
Hi everyone
Diana
Hi Tammy and Chris are there any sites that you suggest for information?
Tammy
Hi Diana, can I narrow that down a bit please. Information about what specifically?
Ahmed Khan
Hi every one, this is 1st time on chat
Diana
Hi Ahmed lovely to meet you
Diana
I am looking for advice on managing medicine after stroke
Ahmed Khan
Thanks, Diana in regards to taking medicine there is an app for medicine list and you can set alarm on it. I have never missed any of my medicine
Chris Lassig
Hi Ahmed, what's the name of the app?
Tammy
Diana, medication information is one of the trickiest areas to get reliable information from the internet. This information is best obtained from your treating Doctor and pharmacist. One of the main reasons is that the interaction of medications with each other is important to consider, AND other health conditions that you may have.
Diana
Ahmed do you know the name?
Ahmed Khan
It’s called medicine list, I got it on my phone
Ahmed Khan
Check on play store
Diana
Thanks Tammy I appreciate that - it was suggested to get a medicine review regularly - every 12 months?
Tammy
Diana, yes a regular review is important. How often that should be depends on many factors to do with your health. If you're starting new meds, then more often is needed to allow for adjustment of dosages. And a review to see if there are medications you no longer need is important too. Certainly don't be afraid to ask your GP about your medications every time you see him/her - even if it's for another reason.
Diana
Ahmed Medicine list - found it http://www.nps.org.au/topics/how-to-be-medicinewise/managing-your-medicines/medicines-list 
Ahmed Khan
Yes that’s the one... very helpful. I take 8 tablets daily so never missed one
Diana
Hi Jude, I have seen discussions about medicines such as using statins online on facebook and in enableme what is the best approach? Is there a site or something?
Jude
I really like the NPS Medicinewise website (www.nps.org.au) - it's a government website so it's trustworthy. They also have a helpline 1300 633 424. A good strategy is to do some research yourself before you visit your doctor - this really helps you make the most of your consultation.
Diana
Tammy what are your tip tips for finding advice online - are their questions we should think about?
Tammy
Diana - being very careful about the source of any online health info is important. As a general rule, government sites and organisations (like Stroke Foundation!) are more likely to have accurate information than other types of sites/forums, etc
mzwagerman
Hi Tammy, when my brother was in rehab from his stroke, the doctors were quoting the usual 3-6 month recovery time. However, I have read many stories of people who have continued their recovery beyond those times. My feeling is that the 3-6 months timeframe has more to do with the standard times that people are in rehab and nothing to do with plasticity of the brain that will allow for recovery at any time. Where is the latest evidence on recovery and brain plasticity? Thanks.
Diana
Great question mzwagerman
Tammy
Hi mzwagerman - yes, we certainly know from longer follow-up studies of people who have had a stroke that recovery is possible beyond 3-6 months. Some people report recovery years later. As for who is likely to get that recovery and the extent to which plasticity is responsible, that's not yet clearly known.
mzwagerman
Tammy. My brother is now 2.5 years post stroke and believes the doctors that he won't recover anymore. Where can I find some evidence to give him hope?
Diana
Hi mzwagerman if I message you in enableme with links to stories of long term recovery - would that help?
mzwagerman
Hi Diana, that would be great. Also, have you heard of any intense therapy places which achieve good results?
Tammy
Thanks Diana - I think that would be very helpful. While there are studies that talk about long-term recovery, they're not an easy read and not aimed at consumers. So stories and encouragement from other stroke survivors is important. Another possible source that may have long-term recovery stories is: http://www.healthtalk.org/ 
Diana
mzwagerman I haven't but I would post that question in the forum here
Diana
Hi Jude sometimes you forget all the questions that you want to ask - is there a guide or resource or something that you can download and take with you to prompt you?
Jude
Hi Diana, here's a quick guide to finding a good GP and making the most of visits: https://strokefoundation.org.au/blog/2015/05/20/looking-for-dr-right-how-to-find-a-good-gp 
Diana
Thanks Jude
Jude
Also Diana - the Post-Stroke Checklist was designed to help doctors and stroke survivors work together to manage the all the issues that arise after stroke. Great to download and print out to take to visits. It's here: https://strokefoundation.org.au/About-Stroke/Help-after-stroke/Stroke-resources-and-fact-sheets 
Diana
Thank you Jude
Chris Lassig
Thanks Jude. The Post-Stroke Checklist and other questions to ask are also on enableme, https://enableme.org.au/Resources/Questions-to-ask 
Ahmed Khan
I had stroke in June 2014 and still have not recovered. Finding very hard to cope my day to day
Tammy
Ahmed - I'm sorry to hear that. Have you joined the enableme community or a local support group?
Ahmed Khan
I had a lot of support from My GP, Rehab and Physio I have come a long way from ICU to 4wheel walker and not using a walking aid. It is just my mood swings, anxiety is issue
Tammy
Ahmed - have you asked your GP for a referral to a psychologist? If you'd rather not see a psychologist in person or if getting to visits is tricky, then there are some free online CBT resources - which have been tested in trials and shown to be effective. Some are listed in this resource: http://www.racgp.org.au/your-practice/guidelines/handi/interventions/mental-health/internet-based-or-computerised-cbt-for-depression-and-anxiety/ 
Ahmed Khan
Tammy, I did see one for 5 months
Jude
Hi again Ahmed: mood swings, depression and anxiety are very common after stroke so you're not alone. There are different treatments, management strategies and lifestyle changes with evidence to show their effectiveness, but it can take time to find what works best for you. It would be great if you could give StrokeLine a call, or even email them, to talk to one of our health professionals. 1800 787 653 or strokeline@strokefoundation.org.au 
Ahmed Khan
Hi Jude, Thanks I will do this.
Diana
mzwagerman and Ahmed have you read Norman Doidge's book? The brains way of healing?
Ahmed Khan
No not yet
mzwagerman
Thanks Diana for the book tip!
Diana
Ahmed it's about neuroplasticity, I will message you with details
Chris Lassig
mzwagerman and Ahmed - we also talked about long-term recovery in our podcast on neuroplasticity, https://enableme.org.au/Community/Podcasts/Neuroplasticity 
Diana
mzwagerman and Ahmed here is a link http://www.normandoidge.com/ there are two books
mzwagerman
Thank you Diana.
Diana
Tammy when you are reading something not on a Govt website - what are some questions that you should ask yourself?
Tammy
Diana - the items listed on the DISCERN website are good questions to keep in mind when looking at health information online http://www.discern.org.uk/discern_instrument.php
Tammy
Diana - as a quick list, it covers things lie:
oops like: A good quality publication about treatment choices will:
Have explicit aims
Achieve its aims
Be relevant to consumers
Make sources of information explicit
Make date of information explicit
Be balanced and unbiased
List additional sources of information
Refer to areas of uncertainty
Describe how treatment works
Describe the benefits of treatment
Describe the risks of treatment
Describe what would happen without treatment
Describe the effects of treatment choices on overall quality of life
Make it clear there may be more than one possible treatment choice
Provide support for shared decision-making
Diana
Thanks Tammy do you have advice about reading reviews from survivors or carers. Is it good to search for those?
Tammy
Diana - can I clarify what you mean by 'reviews'?
Diana
Hi Tammy I mean you see conversations about some treatments and in online websites there are stories that seem too good to be true - how do you know?
Tammy
Diana - ok, thanks. I think the 'rule of thumb' is to treat all information from these types of sources skeptically. It's the old adage of "If something is too good to be true, it probably is." From anecdotal stories, there is no way to "know". At best, you could ask if they know of any research to support their claims, or work with a health professional or StrokeLine folk to search the research literature to see if there is any support (ie evidence) for the stories being provided.
Diana
Hi Tammy thanks for that - good advice
Tammy
Diana, my pleasure
Chris Lassig
By the way everyone, we'll put all these links in the transcript of this chat, which we'll upload after it's finished.
Ahmed Khan
That will be great Chris
Tammy
Thanks Chris. Links to richer sources are useful and saves a lot of very quick typing!
Jude
Just a plug too while we’re here for my favourite general health website, the Better Health Channel (www.betterhealth.vic.gov.au). It's easy to navigate and the information is very clear. It's a Victorian government website but relevant whatever state you are in. I always start there for health information.
Tammy
Thanks Jude - yes, the Better Health Channel carefully check the information that they upload, so a good resource as a starting point
RobAnderson10
Stories from others about what they would do to improve their rehabilitation would be useful. The quality of my rehabilitation services was overall excellent. However it was 3 months before a follow up appointment for a cardiologist at a public hospital after an echo cardiogram. I felt like exercising but was really restricted. So we soak up as much online information as we can.
Tammy
Hi Rob, unfortunately I don't have any advice to deal with the frustration of waiting times for health professional appointments. Were you restricted from exercising because you didn't have the "all clear" from your cardiologist or because you didn't know where to start with the exercises? If the latter, this site might be of interest http://www.strokeclass.com/ 
RobAnderson10
My GP wouldn't give me the all clear. The cardiologist finally said just exercise up 160bps if you've done this before. I took the risk prior to this. Everything worked out OK. After the stroke I was told that getting into rehab ASAP was important.
Tammy
Hi Rob, I can see that it would have been frustrating for you to have to wait and not be able to exercise as soon as what you wanted (and were generally advised to do). I'm glad to hear that you're able to exercise now and that all worked out ok.
Diana
Hi Jude - when you are unhappy with the 'service' or info you are getting from your treating health professional - what should you do?
Jude
Hi Diana, the most important thing is to know that you deserve better, and there are strategies and systems that can help you get better healthcare. Many of us have a natural tendency to put up with things, but that's not helpful for anyone, health providers included. I wrote a blog about this after my family went through it. I worked with my StrokeLine colleagues to put together everything we know about advocating for yourself or a family member. It's here: https://enableme.org.au/Users/Profile/My-Blogs/View-Blog?blogId=5d3be234-50f7-4730-aee4-13151111a955 
Diana
Thanks Jude
Chris Lassig
Hi everybody, we have Tammy with us for another 5 minutes. Any final questions for her?
Tammy
Unfortunately I have to go to another commitment, so have to leave. It was nice chatting with you all. I wish you all the best in your recovery.
Chris Lassig
Thank you heaps for joining us, Tammy.
Tammy
My pleasure.
Spc
Thanks for all the links to useful resources.
Chris Lassig
No problem, Spc
Diana
Thanks All
Jude
Thanks everyone and just remember: when in doubt say "Show me the evidence!"
Chris Lassig
Thank you again everybody for joining us today, we've had some great discussions! Come back shortly for the full transcript with links to resources