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 I tried a couple of medications, which were eventually be withdrawn from the market because they were unsuitable.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've always been the big person in photos at school. I'm the bigger one. Food has always been a comfort to me. However, the weight really started to pile on when I had my first daughter. When I was at home with her, and she's a little baby at the time, I wasn't out working 5 days a week. I wasn't doing any of the exercise that I used to do. I was at home with this new baby and that was when the weight really started to pile on.

You can't walk as quick as other people. You make excuses why you need to stop and have a breather. For me it got to the point where I couldn't enjoy life with the girls like I wanted to. I went to my doctor's surgery on numerous occasions and said, ``I need some help.`` And they just say, ``Go on a diet. Do this. Do that. Do this for a year. Follow that for a year. Follow that for another year.`` There's not the right amount of support out there for ladies and gentlemen who need
serious weight loss help. Until I saw myself on a film that I thought, ``Oh my goodness, there's other people in that picture who to me are a healthy normal size and I was twice maybe three times their size.`` And that seeing myself on telly and comparing myself to other people, I thought this needs to change. I need to change my life and I need to lose some weight.

Having weight loss surgery is really scary. The whole process from picking up the phone to um making that first appointment to see the consultant to actually following it through and having that operation. It's a massive, massive step to take. But it's changed my life. It saved my life ultimately. And I think if you're of a certain size, you know, you need more help than just doing
routine diets. Now I've lost a lot of weight. I can see the compensations I did as a larger lady. I can move more now at work. I can get more involved with the children, the clothes. I don't have to either look online for specific large lady shops.

I've got more energy as well. I'm able to do stuff with the girls rather than being the token bag holder when we go to the theme parks. I'm on the rides now with them. I'm uh correct size to be able to fit into the seats. I don't have to stand there and just cheer them on from the sides. I'm there on the rides. They're there holding my hands while I scream as we go around the rides together.

As a larger person, I was not disrespected, but sort of in the background a bit more. But now I think I'm treated slightly differently, slightly better than I was a few years ago. Before surgery, I had several health conditions. I still have them now, but they're nowhere near as bad as they were before the surgery. I had high blood pressure, and I was taking two tablets daily for that. I had asthma and eczema.My eczema has now improved. I only put creams on when I need to, which isn't very often at all. My asthma is really well controlled. I don't need the inhalers anymore. And my blood pressure, I don't take any tablets now.

I don't think I would have been able to carry on for many years at the size I used to be. So, it has given me a whole new lease of life.