The European and International Congress on Obesity (ECO-ICO2020) was held Sept 1-4th online and I was lucky to attend and be part of this huge event which over 3,000 people registered for. One session which particularly stood out in my mind was on Wednesday 2nd Topic Session: Physical Fitness and Function in Childhood chaired by Dr. Grace O ‘Malley and Physiotherapist Colin Dunlevy. Dr. O’Malley is a pediatric physiotherapist at Temple Street Children’s University Hospital in Dublin, Ireland, and coordinator of the Temple Street W82GO Healthy Lifestyles Programme. She also was the recent Chair of the Association of Studies of Obesity Ireland (ASOI). Dr.O’Malley was in touch with both the European Coalition for People Living with Obesity (ECPO) and the Irish Coalition for People Living with Obesity (ICPO) patient organisations, and requested to speak with patients about their physical activity and pain management.
Patients volunteered and their experiences were pre-recorded and made into a video which was played as part of the presentation. It was emotional for me to listen to. Primarily because it is upsetting and raw to hear how obesity has such a devastating effect on patients lives, but also because each person who spoke was so giving of themselves and their very personal experiences. Those attending the session could not help but take away an increased understanding of the patient experience. Those who work as a healthcare professionally more importantly should be able to apply this knowledge for better practise.
Here are some of the memorable quotes that resounded with me.
Linda “It wasn’t until I attended the Weight Management Service that I realised the team were there to support me, they didn’t criticise me but said go five minutes from your home and back and that’s how I started. I stopped believing I had to walk for an hour. I have been able to hike mountains at the week-ends with my sisters after years of being the only one sitting at home alone”
Ben “Walking has never been a problem, standing still is. Dressing rooms were always a disaster. Seats on planes were a disaster. Everywhere you go you can be very restricted.”
Maura “I enjoy the pool where I can walk in the water without pain. Getting out of the pool with the weight is a reality check. I am afraid to walk too far, so I will stay near in case my knee or back will hurt and I am afraid I won’t make it back home. I’m 67 now and I feel like when I was 18. I have energy and my family tell me to sit down but I can’t sit still”
Lorna “There are a lot of practical things a health care professional can do. Having an examination bed big enough with a step up, and a weighing scales that will go to the higher weight. People simply need to be polite. If you go in bleeding don’t say, well you need to lose weight.”
Shell. “My son has Autism, there are days where I cannot keep up with him. I had very little pain before I lost a vast amount of weight. Now I cope with burstitis in both knees, nerve pain, arthritis, I’m in constant pain. It can take me ten minutes to put my foot to the floor in the morning. My experience of the Weight Management Service was positive. If I achieved half of the steps they set out for me they celebrated that with me. You came back for appointments because they made you feel good.
People expect you to push through the pain but some days you literally can’t. Don’t be judgemental, work with people and listen to them, we ARE trying”
The responses after the presentation was over was inspiring. It was clear that these patient experiences made a difference. They brought insight and possibly challenged beliefs that healthcare professionals previously had.
Dr O’Malley finishes off by stating that having people who understand the physiological barriers is important to understand to how to effectively engage and support people who live with obesity.Dr. Margarita Tsiros who presented in this session commented on the common theme from the patient voices which is “the importance to celebrate the success no matter how small, even small regular bursts for five minutes is something to be celebrated. That was powerful”
I hope the patient voice continues to be heard more and more. At ICPO we have been asked if we could create similar videos, or use role playing which could be used for training upcoming new healthcare professionals, and this for us will be a priority.
I am so incredibly proud of my fellow Irish advocates who are newer to this, just like I was three years ago. I remember feeling uncertain if my voice would make a difference and at this session it is clear the patient voices most definitely did. I cannot wait to see how confident and strong a voice we will have combined as an organisation in three years time!