Ken Clare, UK


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So my name is Ken Clare, I’m 54 years old, I’m from Liverpool in the northwest of England, which is in the United Kingdom. I’m here today to talk about obesity. I’ve suffered from obesity all my life.

It’s affected me in many, many different ways, which I’ll talk about in detail later on in this video. I’m speaking because I’m a member of the European Patients Council, set up by EASO, the European Association for the Study of Obesity. It’s an exciting venture that I think is going to make a real difference to people living in Europe with obesity problems.

I want to talk about a personal approach, about how my mood and behaviour and thoughts have affected my obesity. Looking back, I can see that pattern has developed when I was a child. If I had a good day at school, it would be celebrated with food.

If I had a bad day at school, I’d commiserate myself with food. For me, it was an expression of what was going on in my mind. It was a good friend, a cruel enemy, and a bitter mistress.

I think that some days I can not think about food at all. If I’m busy and occupied, I can get into a situation where food doesn’t affect me in a negative way. Food can be the last thing on my mind.

Obesity, say for instance, my exercise plan can just go out of the window. When I first came into the obesity treatment, I could walk about 50 steps unaided. Yesterday, I walked 4,500 steps around an airport.

I realised then, no matter what the scales say, that my life has improved considerably. The thought that that made me feel last night, when I got a message from my phone that told me it was my best walking day for a month, made me feel really positive. I’ve been feeling over the last month that I’ve not been doing well, was a good day.

It’s about the balance between food, mood and exercise that for me is difficult. If it was easy, if there was a magic pill or a magic formula, I’d look like everyone else, but there isn’t. Obesity is a complex disorder with many dimensions.

It’s about psychological things, it’s about physical things, genetic things, and probably lots that I don’t understand and probably even some scientists haven’t yet explored. Stigma in obesity has several dimensions. I think there’s a personal dimension for me, but there’s also about how it affects some of the people that I work with and some of what I observe in broader society.

For me personally, I think I’ve seen stigma in my employment. When I was told to lose 10 stone in a year by an occupational health doctor, completely impossible. She didn’t recommend weight loss surgery either at that time.

I’ve also experienced stigma by being passed over for employment opportunities for promotion. I’m very overcompensate for who I really was and I didn’t really feel as confident as I made out, but I always used to be larger than life. Some of the people that I work with have experienced a lot more problems.

They’ve experienced stuff around not being able to get a job and I’ve just been running a course recently to help people get better outcomes from their bariatric surgery, weight loss surgery. Several people have got jobs as a result of completing the course. Two people have started in further education.

So people are getting real increases in their life, real opportunities. Somebody else got a promotion at work, but it’s about confidence and about relationships. Nobody likes to be the fattest person in a room.

It’s a very, very lonely place. So in trying to think about some personal examples about how my weight has caused a stigma and made difficulties for me, the first one is about any job that I’ve had with a uniform. It’s really difficult to get uniforms beyond a very small range of sizes, to the point that when I worked in theatre and operating theatre, I had to get some special blue scrubs made in my size.

And that was really embarrassing to have to ask and even more embarrassing to have to wear. Travelling on a train was a nightmare at my biggest. I am still obese, but I’ve lost probably about 50 kilo of lost and maintained the loss in over 12 years.

At my biggest, I get stuck in train seats. I once got stuck in a toilet on a train. I’m still, even yesterday, I was very anxious about going to the toilet on an aeroplane.

I wouldn’t even go and look how big it was. I thought that if I looked through the door and someone had seen me and it was too small, what would you do? So I just didn’t. Yesterday, walking around the airport, I saw the transporter that I used to use regularly, which is a sort of four-wheel drive Jeep that a man comes and drives you around the airport if you’re unable to walk.

I used to use that frequently. On occasions, they’d send a wheelchair and the person pushing the wheelchair would take one look at you and would quote health and safety and say that he couldn’t push you around the airport and I understand that. When I was looking into having bariatric surgery in 2002, I looked around the internet and I found some American websites, but I could find no English or European information on weight loss surgery.

So I decided to set a website up and with the help of a few willing volunteers, we very quickly grew. We started off with a website, as I say, discussion forums and then we started a range of support groups across the UK. We have two national meetings a year and we find that the peer support that people give each other is the most important part of this procedure.

We find that speaking to someone who’s not only had an operation but has been through it, lived it and survived to tell the tale allows for a unique bonding with someone and we’ve got success stories over and over again. The success isn’t just about losing weight, it’s about gaining health and I think people forget that. Okay, it’s nice to lose weight, but it’s nice to be able to walk properly, to be able to walk with your kids, to be able to get off medication for high blood pressure, to stop having to use a mask at night because you’ve got sleep apnea, to stop taking insulin or tablets for your diabetes.

All those things together are just the side effects of weight loss surgery. So I think we’re standing at very interesting times for WLS Info. I’ve been talking to charities and groups across the UK about how we could work together to form a coalition of patient groups in the UK.

I’ve had the support to do this from the European Association for the Study of Obesity Patients Council and we’re hoping that we can form some sort of strategic alliance that patient groups can speak for people not just in surgery but right across the obesity spectrum and from childhood to old age. So looking to the future for, first of all, for weight loss surgery information and support. I think it’s going to be a charity that goes forward and it encompasses hopefully more of a European approach because I think there are European groups out there and I think we’d like to link with them.

I think that we’d like to move into supporting people who are taking medication for obesity and attending commercial slimming providers. So I set up a charity called Weight Loss Surgery Information and Support and then about five years later I realised that weight loss wasn’t the most important dimension, that health is. So if you haven’t got health it doesn’t matter how much weight you’ve lost and I’ve come to that conclusion.

So it’s onward and upward for me, speaking at more conferences and getting the message across to healthcare professionals and media professionals alike because I think people need to hear people’s stories because I think that’s what excites people is that when you hear the story and you hear the changes it’s made.