Research exploring patients’ experiences after weight-loss surgery at the UK’s busiest NHS bariatric surgical unit has uncovered how society’s judgments surrounding the operation have a huge impact on their lives.
In collaboration with the bariatric surgical team at Sunderland Royal Hospital’s specialist ward, which treats those who are morbidly obese and have undergone bariatric surgery, the team of researchers at the University of Sunderland gained a unique insight into patients’ experiences of their struggles with obesity and related illnesses, the reality of the transformational operation and its impact on their daily lives.
The three-year study found that while none of the patients regretted the surgery, which resulted in them losing up to 60 per cent of their body weight, the findings exposed many of the social risks they encountered. These included their daily challenges of adjusting to their new lives; from the ‘nightmare’ of eating out in restaurants and society’s negative perceptions of bariatric surgery, to be being viewed as a weight loss ‘cheat’.
The findings will have significant implications for the way in which bariatric patients are supported both before and after their surgery by healthcare practitioners and will help patients to prepare for post-surgical life.
Dr Yitka Graham, who led the research for her PhD, explained: “We have this effective method of weight loss that keeps the weight off, resolves diseases such as diabetes, and for many, it’s the only method of weight loss that you can maintain long-term and the published evidence for it is proof that it works, yet what we discovered through our research is that we still live in a bariatric-unfriendly society.
“My doctorate looked at how patients adjust to bariatric surgery in their everyday lives and what they experience as a result. We know bariatric surgery works, but we need to know more about how this surgery affects someone in a social sense, so we can better support people outside medical settings and create a more bariatric-friendly society.
“I found that no one regretted having surgery, but discovered that there seemed to be three different ways in which people adjusted to living life with a surgically-altered body, especially when it came to social situations and eating.
“Because bariatric surgery alters your digestive system your eating is fundamentally changed. So what you eat, how and when you eat is affected and there’s social risk in that.”
The three profiles identified were:
– The Risk Accepter: these patients reported being comfortable with the risks associated with bariatric surgery, and had a way of dealing with the adjustment which was linked to a positive network of family and friends. They also were willing to comply with the changes to their lives needed in order to achieve their goals and expectations of surgery.
– The Risk Contender: this group reported experiencing setbacks in their life, both self-inflicted such as weight gain, and incidents out their control. Some experienced guilt for the cost to the NHS because of surgery, while others reported that couldn’t tell their family members they felt ashamed. It was an on-going process to accept their situation.
– The Risk Challenger: there was one patient’s journey which seemed to be different from the others. He acknowledged that life adjustments post-surgery had to be made, but refused to adhere to the recommendations and advice given for these. His desire was to live a ‘normal life’ as opposed to a life that was dictated by the ‘demands’ of adjusting to life after surgery.
The research showed that exploring the attitudes towards risk allowed a deeper understanding of the meanings and actions which the participants performed in their everyday lives.
Dr Graham commented: “As a society we don’t like bariatric surgery because we think you should lose weight through diet and exercise. So surgery is perceived as a form of cheating or wasting NHS money, and because of all these negative views, no one wants to touch the subject. We found many patients would simply lie about their surgery to avoid being judged for their decision, having already been subject to stigma as an obese person.”
She added: “We have only recently begun to recognise obesity as a disease and what we have to remember is surgery is only recommended to a person with obesity who has unsuccessfully attempted to lose weight through other methods. Surgery offers rapid and sustained weight loss, improves obesity-related illnesses and makes significant changes to a person’s appearance and eating habits.”
It is hoped the study will be helpful to patients who are considering or have undergone bariatric surgery, to help practitioners who work with patients gain a deeper understanding of the social aspects of adjusting to weight-loss surgery, which exists outside routine clinical care, and to challenge the negative perceptions of bariatric surgery , to support the increasing number of people who seek bariatric surgery as a weight-loss intervention, across a range of relationships and social settings.
Dr Graham also hopes to challenge societal views of weight-loss surgery and has been helping to develop an app to list bariatric friendly restaurants in the region.
Consultant surgeon Peter Small, specialist in charge at City Hopitals Sunderland NHS Foundation Trust’s weight management surgery unit, commented: “Dr Graham’s thesis has explored the often-ignored society’s prejudice against the obese person and produced extremely interesting findings of how that person copes with a new-found life. This is important in that weight loss surgery cannot be compared with any other branch of surgery and requires a holistic approach to patient care. The Surgical team recognises psychosocial changes are a major part of the patient’s new life and are now better able to understand the attitude of the patient both before and after surgery.
“Dr Graham’s work will allow the surgical team to approach and guide the patient’s expectations following surgery. Future collaborative work between the University of Sunderland and City Hospitals Sunderland NHS Foundation Trust will allow us to develop a scoring questionnaire which could quantify the patient’s approach to risk and measure this against surgical outcomes.”
Consultant surgeon Kamal Kumar Mahawar, added: “Though it is tempting to concentrate only on direct patient care, we will never see any medical progress without meaningful clinical research. This is probably why GMC now recognises conducting research as one of the core attributes of a good medical practice. I think it is a part of my wider responsibility as a consultant surgeon in one of the UK’s biggest bariatric surgery units to help with patient-focussed research as much as I can.”
To view the full study published in Clinical Obesity, click here: http://sure.sunderland.ac.uk/7161/
The findings have also been published in the journal of the World Obesity Federation.
Peter Wright – case study
A number of life-changing factors led to Peter Wright’s weight gain and unconsciously built up slowly over time, starting in his mid 30s when a knee injury left him unable to exercise regularly. Then came a stressful job, followed by the devastating news that his wife had cancer and caring for her at home until the final stages in 2010.
By this time the 55 year old, from Gateshead, had reached his peak weight of almost 20 stone, suffering Type 2 diabetes, asthma and in desperate need of two knee replacement operations. Despite repeated attempts to lose the weight through diet, Peter got so far, but would always put the weight back on and some more. But four year ago he decided enough was enough and pressed his doctor to put him forward for weight-loss surgery.
He underwent a gastric bypass at Sunderland’s NHS bariatric surgical unit, which led to him losing almost eight stone, and the results he says have been life-changing.
“Everything changed and the impact on my life was enormous,” he explained. “My diabetes immediately disappeared and I no longer needed medication, my blood pressure went down to a normal level, amazingly I no longer needed surgery for my knees and I’m on much less medication for my asthma, even the woolly headed feeling I suffered went away. The day after surgery I felt like I could live another 20 years.”
He added: “I’m so much more active now, I’m full of confidence, have a wonderful girlfriend and am able to walk down the corridor at work and smile at people. I found people used to avoid eye contact when I passed them previously. I am still the same person, but people inevitably treat you differently when you’re that size.”
Peter admits he was initially nervous about the surgery, but says he was on his feet and walking around the next day.
However, he says the biggest impact has been adjusting to the small portion sizes: “It took a lot of self discipline and hurts if you eat too much!
“The surgery throws many different aspects of a new lifestyle at you, but I couldn’t contemplate going back to that 20 stone man. I would recommend surgery to anyone.”
However, he believes what the surgery can’t cure is the mental illness associated with obesity. “I only had mild depression, but of course many reach this size as they used food to cope with their emotional and mental health problems. I also think some people go into a sense of mourning when they have to give up eating the way they did.
“People used to say to me, ‘why don’t you just eat less?’, but it’s far more complex than going hungry for 24 hours a day. We also live in a world where it’s very hard not to put on weight with so many hidden sugars in all the food that surrounds you.”
Peter, who works in environmental health, says he hopes society develops a lot more understanding of people living with obesity due to the complex nature of the disease.
“I very much welcome the University of Sunderland’s research, which highlights what many patients are experiencing both before and after their surgery.”
“I used to feel guilty, like what would people think of the NHS paying for me to have surgery…but when I got compliments I would brush them off because I was thinking it was the surgery, not me that made me lose weight and I would feel guilty….” (Patient K)
Sometimes I think I should just come clean about it, but I don’t want to be judged, or talked about…. maybe it’s self-perpetuating, maybe those of us who have had it done should talk about it more, but I don’t want to be judged… I don’t have any regrets, I want to tell others, ‘look I had it done, you could too’.”(Patient Q)
“I never told anyone, except my Mum…I just didn’t want to be talked about…I didn’t want that from anybody, so I made that decision…the only person I can talk to about it is my mother, who has been really good and supportive… I have two children and they don’t know a thing….people judge you and I worry what people will think…definitely…even now I worry more now what people are thinking, more than before” (Patient D)
“I have been told by others that surgery is the easy way out, and that surgery means you are a failure, that was another one, or how do I feel knowing I have cheated….they see it as other people doing it for you, like the surgeons doing the operation is losing the weight for you and you are not doing it yourself, they’ve done it and you’ve played no part in it…it’s a miracle you’re not part of…they don’t like it for some reason, I don’t know, but that’s how I think…jealousy maybe…but people who are still big are the ones who ask me do I feel like I’ve failed or guilty because I’ve not done it on my own, so I ask them do you feel guilty because you have not done it on your own? (Patient R)
“I think people should be fat…once in their life, just to be a little less narrow-minded. Not every fatty is… a waste of space. If I said to someone, hey I’m a drug addict, they would be so, oh my God, I’m so sorry, what’s wrong. I sit here, but I was and I am addicted to food and it’s like, you greedy b***h, get over it…right, lock the door, lock the fridge, but if I’m an alcoholic or a drug addict it’s all fine, even if I’m an anorexic…that’s so bad, poor thing, can’t eat, but you, you’re greedy and you’ve got diabetes because you’ve eaten all that chocolate…you’ve done all this to yourself.” (Patient C)
“Once I was out for dinner with friends and one of them said to me if I find out you’ve had an operation, I will never speak to you again. She said it was wrong and it was cheating.” (Patient D)
“I wish I had done it sooner…this isn’t a regret but an observation…I think doctors need to stop thinking about it as major surgery and start realizing it can change your life and the affect it can have on someone’s life…they need to understand more” (Patient L)