EASO Patient Council: November 2014
Spotlight on Ken Clare
Ken, please tell us a bit about yourself.
I am 53 years old, and after a lifelong struggle with obesity I am still morbidly obese.
As far back as I can remember, weight has been an issue. My mother was obese and was always dieting. Worrying about my weight, she encouraged me to try to diet, though in the sixties I don’t think we were as enlightened as we are now.
I hated physical activity at school and felt shy and embarrassed about my body in an all-boys school. People gave me verbal abuse and bullied me
because of my weight. I don’t know about other countries in Europe, but men in the UK are usually reluctant to discuss their health or weight with one other, which only heightened my isolation.
I left school as soon as I could and went to college to study to become a nurse. At 18 I went away to work and it was suggested that I work in mental health, as my large frame and height would be an asset.
My weight continued to increase I was promoted to a job that required less physical activity, but my food intake stayed the same or increased. I married, lost weight then gained it again in 12 months. My wife and I had a daughter who is now 24 years old. My weight just continued to rise. My doctor never mentioned this. I stopped using the scales when I was too heavy for my weight to be recorded. I was struggling with my mobility; had severe joint pains and could only walk for about 75metres.
Approaching the age of 40 in the year 2000, I decided to do something about this myself. At this time my weight was approximately 200kg. I was referred to a specialist weight management clinic. It was here for the first time I felt listened to and helped. This was a major turning point for me.
I jumped right into this course though I was the only man participating. I took part in physical activity. I went for Cognitive Behavioural Therapy. All this enthusiasm was unusual for me. I tried Orlistat, but the other two drugs available at the time were unsuitable for me.
At the end of two years I was referred to a surgeon and I underwent a gastric bypass. The effects were dramatic. In 12 months I lost 100kg. My mobility had improved and I was able to work out in the gym and even take part in 5K races.
Shortly after my operation I set up a charity (not for profit) called WLSinfo www.wlsinfo.org.uk
This has not been an easy journey but my life is 1000% better than it was. I have experienced a rocky road to my recovery; along the way I was diagnosed with bipolar, alcohol problems and a brain haemorrhage. But I am here and I am doing well today.
Just recently, I have been fortunate to be involved with another charity which obtained funding from our National Lottery, and we are running short courses for people who have had bariatric surgery to help them achieve better outcomes.
In the last 12 months I have been involved as a patient member on a national group looking at obesity treatment policies. It has been an interesting experience. I have learnt a lot about health economics.
I continue to be a qualified nurse and that helps me get involved with obesity and its treatment. I have attended the European Association for the Study of Obesity annual Congresses in both Liverpool and Sofia, where it was great to meet like minded people from across Europe. I hope we get further opportunities to meet and achieve more together through the Patient Council.
I love the internet and gadgets. I am an early adopter of new technology and I especially love Apple products. I am a keen photographer – you can see some of my pictures on my Facebook page https://www.facebook.com/pages/Ken-Clare-Photography/163039187153494
Where do you live?
I live in Liverpool, a large port city on the River Mersey in the North West of England. Most famous for the Beatles, we also have two football clubs, Liverpool and Everton. If anyone comes to visit, do let me know I will give you the tour.
Please tell us how you currently advocate for patients and hope to support people who experience obesity in the future. Do you have advice to share?
We are fortunate enough to have a National Health Service which is free for for all at the point of access and time of need. It is clear, however, that there are financially difficult times ahead and I have concerns obesity will be an area where cuts are made.
My advice is to be persistent – if a door is closed in your face – keep pushing. I believe unity and patient power are powerful forces that clinicians and politicians will find it hard to resist.