Opinion

Removing the barriers to referrals can save lives – like mine

7 Comments
  • Judy L says:

    WOW! What a brave and informed woman and patient! When folks ask who is responsible for their health outcomes, I say YOU are, because medical staff have their own specialty and often after that they are done. We learned the hard way only after not seeking a second opinion for my then 44 year old husband in 1999. The practice here in Alberta is that the neurosurgeon who sees you in emergency is your surgeon. He was inexperienced and specialized in back surgery. That operation left my husband with significant deficits which we now know could have been avoided . The second surgery in BC, we researched and that surgeon, specializing in brain tumors and in that critical area has been wonderful. Now as it is growing again, and research has led us to a third surgeon in the USA, but always we are dealing with the first botched surgery’s side effects. We have been part of the local Brain Tumor support group since 2005, where we hope sharing our experiences, and new knowledge on other things such as exercise, spiritual growth, nutrition, and other resources may smooth others’ journeys.

  • Caitlyn Gooding says:

    Your such an inspiration! This was very well written and very interesting. thanks for being so willing to share your story, it could help so many other people.

  • Natalie Charette says:

    Emily, thank you for writing this piece, my father has been diagnosed with a brain tumour and it has taken us nearly a year to have an appointment with a specialist. Your words and story are inspiring and comforting. Thank you friend <3

  • Maureen Smith says:

    Emily,
    Thank you so much for sharing your inspiring story and journey. It makes me so incredibly sad that patients who do not have your extensive science background are not able to basically save their own lives. I know that you have helped so many people by sharing your skills, yet there are so many others who are in similar situations. And you’re right that this is a major issue for people with rare conditions or diseases. I’ve experienced it several times myself but fortunately it wasn’t for situations as grave as yours. In my opinion, the issue is the hesitancy for specialists to refer patients to their fellow specialists who have read all the studies because that is their area of focus. Specialists are best positioned to know who the experts are and this referral doesn’t take anything away from their own skills and achievements. There’s probably many reasons for this as you have alluded to but none of them can possibly be acceptable to patients. I do hope that some of the efforts to produce lay language summaries of research and all the work that patient advocacy groups do will widen the net of access to research for patients, research that could potentially save their lives! I’m grateful that you have raised such an important issue and that you are doing well.

  • Amar says:

    I understand that we can not expect specialists to know everything, however all doctors have to understand their own strengths and weaknesses. If the two neurosurgeons were not 100% sure about their diagnosis, they should have been honest with themselves and with you. If they were dealing with an area that they had little experience they should have let you know. They could have done further research, talked to their colleagues and made the appropriate referrals. The important thing to note is that, despite not being a neurosurgeon Emily was able to do the necessary research and get the treatment she needed. Why couldn’t the two neurosurgeons do the same? The problem is not that the two neurosurgeons came to the wrong conclusion, but how they came to their conclusion. It appears that they did not put enough work into their diagnosis. They gave a diagnosis that was rushed and not well researched.

    Neurosurgery is one of the most difficult areas of medicine. It is not possible to get through the residency and fellowship, unless you are the best. Not only do they learn surgical skills, but they also develop their soft skills such as the ability to problem solve. In this case the neurosurgeons did not have the experience, but they also did not use their problem solving abilities. Neurosurgeons are well compensated (there is a lot of debate about this, however based on the average wage of a family of 4 in Toronto, they are well compensated). They are saving lives, therefore I don’t think anyone would say that they are overpaid. However the mistakes that a Neurosurgeon makes has to be limited. It is true that there will be a number of cases where nothing can be done. However if the problem is because the surgeon did not recognize their limitations, did not consult with colleagues or did not do the necessary research, the problem is much bigger.

  • Mike Fraumeni says:

    Thanks for sharing your story Emily, I learned from your story. I agree it’s not fair that patients should expect specialists to know all the latest research in their speciality area due to a mountain of published studies or whatever nature. However what bothers me are specialists who tell you something and then you research it in the peer-reviewed literature and learn they are wrong. In my case a psychiatrist told me that in order to have Huntington’s disease, the MRI must show basal ganglia atrophy which is incorrect as I learned from the American College of Radiology that early in the disease, MRIs can be normal. This specialist also mentioned to me that in order to have Huntington’s disease, one of your parents must have been diagnosed with it, again incorrect according to peer-reviewed literature.

    So happy you were able to have a positive outcome for a very distressing disease such as a brain tumour diagnosis. Nice!

  • Matt Barber says:

    Great read Emily from your brain tumour buddy across the pond:) Very insightful article which just goes to show how difficult it can be to navigate the world of brain tumours and the benefits of research and second opinions. Well done you and long may your journey continue .

Author

Emily McIntosh

Contributor

Emily McIntosh recently earned a PhD in Human Health and Nutritional Sciences and is currently seeking opportunities to translate research into healthcare and improve health-literacy for patients.

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