Patient Voices

My name is Ken Clare. I’m the former chair of the European Coalition for people Living with Obesity, ECPO. I’m also a Director of Support Services at obesity UK. And I’m the lead for personal and public involvement in obesity at the Obesity Institute in Leeds Beckett University, which is in the north of England. I’ve been sort of around personally in obesity management since 1999, and it’s been an interesting time to reflect on what that has meant for me personally.

I spent two years in the medical weight management clinic. I tried a couple of medications, which were eventually be withdrawn from the market because they were unsuitable. I also had some cognitive behavioral therapy, some complex assessments. And then I eventually had bariatric surgery. Way back in 2002. Bariatric surgery was a big success for me. But it’s not just the full picture.

One of the things I’ve come to realise as a patient advocate is that obesity is a complex, chronic, relapsing disease, and we need to be thinking about everything that we do and say in that framework. For me, over the years, I’ve learned that weight can go up and down. I’ve learned that weight isn’t the only measure of how things are for me, but also about things, about how healthy I am and what the quality of my life is.

I’ve been fortunate to live in Liverpool in the United Kingdom, where we have an excellent weight management service, and I was referred back into that. I’ve had some further psychological support because for me that is very important, but it’s not for everyone living with obesity. But if it is, then it should be made available. I’ve also had some support around physical activity in a way that was very good.

I’ve had very good primary care. My GP really understood my surgery and he also understood obesity, and more recently I’ve been fortunate to be able to get for myself some medication, injectable medication, which has been part of a new treatment. But it’s helping me maintain my weight and I’ve lost some weight on that. But all these things are equally important.

And I don’t think for me, I was a guy who was a 34 stone (UK measurement) 216 kilos, and I’ve been all the way down to, 17 stone, 108 kilos. Along the way, I’ve needed all those things. And obesity affects you for the rest of your life.

Once you treat obesity. It doesn’t disappear. It’s there.

I think we’ve got to look at that. And we’ve got I think the challenges I think for patient advocates, for people living with obesity, and for clinicians, is to work with the patient to find the best treatment for them.

I’m Susie Birney. I’m the Secretary of the European Coalition for People living with Obesity. I was at a conference recently, and on the programme they had three fantastic speakers. But the title of the session really bothered me because it said Lifestyle Interventions versus Pharmacotherapy versus Surgical Options. For me, I’ve tried lifestyle. That wasn’t enough. I needed a treatment for obesity.

I had bariatric surgery and then years later with regain, I need pharmacotherapy. All three play a part in my life. Why is one pitted against the other as a choice? Obesity is a chronic relapsing disease, and we really need to understand that and make sure even these titles on the programme are correct.