Advocating for the Patient
Good morning, everyone, and thank you for joining for this webinar.
The most important thing to know about me is that I am a person living with obesity, and in addition I’m also a vocal advocate for people living with obesity. I feel that the patient lived experience is vital – it must be included in any healthcare discussion regarding obesity management. Just to give you a little bit of background about myself, I have lived with obesity for my entire adult life.
My journey has been very long and arduous towards improving the quality of my life, which is standard for most of people living with Obesity in the United Kingdom. To put it very plainly, prior to my gastric bypass surgery that I had in December of 2018 here in London, I was weighing on the scales at 164 kilos. My height is 164 cm, so that put me in a BMI range of 61. So effectively, as clinicians, you can understand that my quality of life was severely impeded.
I believe, from a patient lived experience is quality of life, and that is a term that I now use the whole time when talking about my lived experience of obesity.
Did any Health Care Professional ask how I felt about talking about my weight using numbers? NO – not back then. I get extremely anxious talking about it and even contemplating the thought of talking about my weight in numbers makes me anxious.
I recently went for a scan and was “told “to get on the scales by the nurse. I declined and asked the reason why, and explained that I am a person living with Obesity. The dumbfounded look I received from the nurse was incredulous, and the nurse said that I did not look Obese. And to get on the scales.
Even within the bariatric clinic themselves. I am triggered by scales. I'm triggered by numbers, but this was never considered when speaking to healthcare professionals at any stage. It was always, just get on the scales. What do you weigh? Let's take this number.
However, once I had lost over 20 kgs, I realized that I could measure my quality of life in different ways: how many steps I could now take as opposed to how many steps I could take prior to my surgery - without having to rest, sit or even losing my breath. Also, it was the ability to reduce the size of my clothing, and to be able to wear different types of clothing for example, moving from elasticized waists to zips and buttons, the ability to sit in a chair that has arms, the ability to walk into a room and without the first thought entering my mind, is that I am the largest person in this room.
So, in an ideal world, how would I, as a person living with obesity and an advocate for people living with obesity, want to redefine the usage of PROMS within a clinical setting? I believe that what should be done is that questionnaires should be used across the board, asking the correct qualitative, as well as quantitative questions. Measurement tools such as how many steps can you walk right now without having to rest? Which style of clothes are you wearing? Do you have the ability to sit in bar chairs or in a booth? Do you walk into a room and scan the room for people who are larger than you? Questions like that. It may seem silly to you, but those are the ways that the majority, people living with Obesity actually judge themselves and measure themselves. And then let's say after two years post-surgery, which you know is generally termed as “the honeymoon period”, you then ask those same exact questions and then you compare the results - so effective having both measurements in quantitative and qualitative form.
In other words, using Non-Scale Victories, NSV.
We need to adopt the usage of NSV’s more, because it is it is a more empathetic way of dealing with people who have suffered criticism, self-internalization of stigma, external stigma and many many complexities, that have effectively stopped people living with obesity from having any form of decent quality of life.
Now what is quality of life? I know that my esteemed colleagues on the panel here will talk about quality of life and how you measure it, but I hope it's come across clearly what quality of life now means to me.
What we also need to understand is that quality of life is not only physical but it is also psychological and the mental health aspect is extremely important as well and we need to look at those problems that identify how we are feeling about ourselves pre and post intervention, and treatment. Thankfully the coding of quantitative and qualitative analysis is not left up to myself. It is left up to obviously the people who are experienced enough to be able to do that.
I know that what I am hoping for is very idealistic and it’s not as simple as I've put it forward. But the most important thing to remember is that it has always been the emphasis on clinical data However, when actually engaging and speaking with a person living with obesity, you must remember these non-scale victories. Even if you do not have the PROMS that do this, just ask the patient in front of you.
That qualitative information for us actually makes far more sense than the quantitative information that you seek. And as I said before, it helps us to understand that we have achieved things that ordinarily couldn't be achieved before, has dramatically increased our quality of life and has allowed us to regain our health. I look forward to answering any further questions later on and I hand over to the rest of the panel