A lot of work needs to be done to activate MSers to become more engaged in their treatments. #MSBlog #SurveySpeak #ClinicSpeak
“Many thanks to those of you who completed yesterday’s lymphopaenia survey. The results indicate that too few of you are engaged with your pharmacovigilance. You need to engage in tracking your own blood and urine results and understand why you are doing this and the reasons for the frequency of testing. I would expect nothing less from an expert patient. In addition to pharmacovigilance it is also time that you engaged with the tracking of your own disease activity. Please remember information is power and the more information you have about your treatment and its monitoring the more power you will have over your own health and the ability to optimise it. We are entering an era when the activated patient is the change agent that will catalyse the revolution we need in healthcare delivery and consumption; you simply can’t rely on the medical profession to do this. Trust me when I say, the medical profession is one of the most resistant professions when it comes to change and the adoption of new innovations.”
“Many thanks to those of you who completed yesterday’s lymphopaenia survey. The results indicate that too few of you are engaged with your pharmacovigilance. You need to engage in tracking your own blood and urine results and understand why you are doing this and the reasons for the frequency of testing. I would expect nothing less from an expert patient. In addition to pharmacovigilance it is also time that you engaged with the tracking of your own disease activity. Please remember information is power and the more information you have about your treatment and its monitoring the more power you will have over your own health and the ability to optimise it. We are entering an era when the activated patient is the change agent that will catalyse the revolution we need in healthcare delivery and consumption; you simply can’t rely on the medical profession to do this. Trust me when I say, the medical profession is one of the most resistant professions when it comes to change and the adoption of new innovations.”
When I started on Tysabri in 2009 I was told the (then monthly) blood tests were only to check liver function. We now have less frequent blood tests and I only discovered last month that my haemoglobin levels are monitored because a letter was sent to my GP, with me on copy, advising the levels had dropped below normal.My GP has sought, unsuccessfully, in the past to get full blood test results from my prescribing hospital so I don't have to have a separate blood test at the GPs.I had my vitamin D levels checked a few years ago at my GP after reading a post on this blog and now take 5000iu per day. I haven't asked for a re-test.I always ask about my MRI results.This post has re-vitalised my resolve in getting my historical blood tests from my neurology team.
I would love to be able to monitor my own blood results (alemtuzumab patient), but I don't have access to them. How do others manage this?
Where are you located? I'm in Australia & you can ask your ms nurse, neuro or GP to email you a copy.
I'm under the care of the University Hospital of Wales in Cardiff and they send all my results to me after every test and a copy to my GP. Can't fault them at all.
Da iawn!
You would assume this is all obvious but it's not. Thank you for such a proactive and direct blog post urging us msers to be the change we want to see. I'll definitely start to educate myself w regards to my blood and urine results. (On Tecfidera treatment for last 4 months and so far not a single side effect)