Pro-Social, not Anti-Science

Sunday Blog 133 – 28th April 2024

In readiness for the forthcoming Health Consumers’ Council Book Club event with Susannah Fox, I’ve been reading Rebel Health, a Field Guide to Patient-led Revolution in Medical Care. My biggest take away so far is the importance of this distinction as a patient advocate – I am not anti-science—I am pro-social. What this means to me is that I believe in the vital importance of patients, family members & carers and lived experience advocates to be decision makers in all aspects of how our health system works. I believe the way we care for each other in our communities helps us to stay healthy. I also believe that there are many incredible treatments and passionate, caring clinicians who are keen to help us with our health issues. We need to work in partnership where we can, but rebel when the door is locked against us.

A Four Corners episode on spinal surgery leaving people much worse off was confronting.

It all starts with us as patients giving informed consent. But how do we manage the yawning gap of medical knowledge between our surgeons and ourselves? How can we ask the right questions when we don’t know what we don’t know?

Do we understand what we are hoping to get out of the surgery, about what’s important to us? Are we eager to buy a “quick-fix” solution to our problem? Will we be able to stop and think? Will the expensive fifteen-minute appointment with our specialist, that perhaps we’ve waited months for, be enough time to fill in all the gaps?

Everyone’s circumstances are unique, and yet five questions can be all that’s needed to guide us towards the right solution.

• Do I really need this test, treatment or procedure?
• What are the risks?
• Are there simpler, safer options? (e.g. physiotherapy, lifestyle changes)
• What happens if I don’t do anything?
• What are the costs?

I would add to this:

• Take someone along to the appointment so they can take notes or record conversation on the phone to reflect on afterwards.
• Get a second opinion—this may not please your surgeon. Don’t worry about that. You have to live with the consequences for the rest of your life. They may never see you again after the surgery is done. (I did a whole blog on second opinions you may want to dip into)

The last word belongs to the two doctors who wrote Hippocrasy—How Doctors Are Betraying Their Oath.One author, Ian Harris, appeared on the spinal surgery Four Corners episode. https://www.pipbrennan.com/blog/2022/07/10/second-opinions/