More about me...
Since his health problems have worsened and his weight increased, Paul has found he is unable to do many of the things he did before, “I’m always the ‘go to guy.’ If there’s a problem that needs doing, come to me and I’ll sort it. I can’t do that anymore”. His weight gain is having an impact on his daily life, making getting dressed, personal care, and walking a challenge. Changes to his health and weight have had an impact on how Paul sees himself, “because part of me won’t, can’t accept it because that’s not me, this is somebody else. Don’t know who this is, I don’t know who’s staggering around on crutches, I don’t know who he is. The guy that can’t do anything. [sighs] Who’s that?”
Although Paul knows how to lose weight, he feels his health conditions are a barrier to doing this as he finds exercise painful. Similarly, Paul cannot control his weight with his diet. Paul’s eating habits have always been “sporadic”. He grew up in difficult circumstances where “there’s nothing in the cupboard to eat”, so instead of eating meals, Paul only tends to eat when he is hungry. This means that Paul often does not eat throughout the day, so “it’s very difficult to eat less”.
Because of his health conditions, Paul is unable to work. Paul initially used his savings to support his family, but after 3 years, he applied for financial support from the government. However, Paul was listed as “fit for work”, and had his application refused. Paul now receives a housing benefit which is “a help”, but does not cover his rent.
Although he is “grateful” for the health service, Paul feels strains on the NHS are impacting his care. He has had difficulty communicating with his hospital, and has also found it hard to get an appointment at his GP, “The days of sitting down with a doctor and going, “Now tell me all about it. Tell me all your worries.” Again, gone”. The only advice Paul has received from healthcare professionals about managing his weight has been through a leaflet. Paul feels more personalised care is needed, “I need to eat right, and I need to exercise. It’s not rocket science. But then maybe for me what I’m saying is I need somebody to break that down even further…I would like my exercise to be more structured towards me”. He asks healthcare professionals to “listen without prejudice”, and respect their patients, “I really have felt like a naughty boy sometimes. And I’ve done something wrong and I’ve been called to the Headmaster’s office. I’ve been treated like a ten-year-old and I’m not a ten-year-old. I’m a fifty-seven-year-old struggling with his health and health and weight is part of that”.
Paul X describes how being overweight (and associated gout, joint problems and heart problems) affects his everyday life, including not being able to dress himself or bend over and pick things up.
I said, “Obviously I’m struggling just going upstairs, I struggle. Trying to do something, trying to be helpful around the house, I struggle. I get out of breath. It’s horrible, just going for a walk sometimes. Just trying to walk up to the village. Took me, took me two and half hours to walk up the road and back about two weeks ago. It’s hard, hard work.”
So you don’t do much in terms of,
I don’t and again this is where this [pats tummy] suddenly is now and even more of an issue. Not only can I find myself, I can’t put my socks on and some of my personal care I can’t do, I find now that I can’t walk. Let’s just go for a walk. It has to be planned like a military operation. I can’t just say, “Let’s go for a walk.” Because I can end up somewhere up the road not being able to get back and it’s happened. A doctor called the, called an ambulance for me. I made it to the doctors and he said, “I’m calling you an ambulance here.” Rushed me into hospital. So, you know, again, this sudden weight is impacting on,
So you notice more the effect of the weight now…
Yeah. On everything.
…. on your level of activity?
Yeah, yeah, on, on. I just can’t do it. I can’t, you know pick that up now, pick this envelope up here now. As soon as I get to here, I can’t, this is now in the way. Now if I didn’t have this [pats tummy], it would still be an effort because of my heart to pick that up. To bend over and pick that up with my heart. I’d then get up and go [breathes heavily]. Now how the hell do I pick it up when I’ve got this thing in the way? I’ve never had, what’s this, you know, and believe you me it looks worse when this top’s off. I won’t show you, don’t worry, you’re, you’re all right but I’m, you know, I’m nearly at the stretch marks stage. This thing has just appeared and suddenly it has effects on everything I physically, that I try and do.
There was one stage when I could have done my car. I like, I like cars, I like motors and I, I started to do that car the way I wanted it. I can’t do it anymore because if I get down to do something on the car, I can’t get back up or I’m struggling to get back up or when I get back up [heavy breathing] and it has an impact where I say, “Not doing it.”
Paul X explains that losing weight is ‘hard bloody work’ when you live with heart disease, asthma and other co-morbidities.
Have you tried to find information about how to lose weight?
I know how to lose weight. Go and, eat healthily and exercise. There you go, that’s it. That’s how you lose weight. It’s as simple as that. This is not rocket science, it’s as simple as that. But my argument then is, ‘Okay, yeah, I’ll go for a walk.’ Ten-minute walk we’re told by the NHS. Do that. It hurts. I’ve got me ankles and me toes and then I’ve got to carry this around [touches tummy ]and I’ve got this thing [touches heart area] banging away. It’s hard bloody work and then I’ve got to take all this bloody lot and then I’m going, I think I’m going bloody daft. Now all these things, you know, the straw that breaks the camel’s back, there’s a lot of straw on this old camel’s back.
So it is difficult?
It is, yeah, exactly, it is so difficult. It sounds so easy and you’re right. “Go for a ten- minute walk. Just go for it, go for one now.” It’s not as simple as that with me or I perceive it as not as simple with me. Maybe I’ve got myself stuck in such a rut I can’t climb out.
Paul X thinks the NHS doesn’t have the time to plan individual health care “It’s a totally different NHS today than it was.”
Has your diet changed since you were diagnosed with heart problems?
Has my diet? I carried on drinking when I was diagnosed and so when I was drinking to excess then my diet, well it wasn’t even a diet. It would be whatever was first to hand. Not, not, it certainly wasn’t, “Right, now, let’s sit down and do a plan.” Nobody, nobody has ever done it with me at the NHS. I’ve always been surprised that somebody hasn’t called me in to say, they call me in enough for my heart and I’m thankful for that, but nobody’s sat down and said, “Well, let’s sit down and, and go through....” The NHS hasn’t got time for that anymore. It’s a totally different NHS today than it was.
Paul X says it’s usual to see a different doctor each time he has an appointment. The allotted time is not enough to go through all his issues and he feels it’s a case of “get them in get them out”.
I’ve been in and out of doctors and hospitals and we don’t have, up in our doctor’s surgery you don’t have one particular doctor, so you might see a doctor one day. You go again the next week and you see a totally different doctor. He might even not be from that practice. He might be a locum. So, you never get that kind of care where you sit down, and they go, “Oh hello Paul.”
Because then, you have nine minutes with a doctor. They’ll never admit it, but they want you in and out because it’s, a doctor’s surgery’s a number crunch just the same a big hospital is. Get them in get them out. Get them in get them out. The days of sitting down with a doctor and going, “Now tell me all about it. Tell me all your worries.” Again, gone. Get in tell me what’s it’s like and go.
So, if you’ve got to see somebody that you’ve never seen before, you have to sort of recap and there’s four or five minutes of your time gone. I once went in and I said, “I’ve got three things.” I trapped my finger in the door, in that door when we moved here. It flattened the finger. I said, “I’m here about my heart and oh by the way...” She said, “No, no, no, one thing.” I said, “But oh...” “No, no, no, one thing. Yeah, yeah that looks okay.” She said, “You can’t have two. You, you have one. You have one issue and you go” [sighs].
Paul X would like healthcare professionals to listen, treat people with respect and “not just go through the motions”.
What would you like from them? What would you advise them to do?
For people like you?
Yeah, listen. Listen without prejudice. Listen without anything really going on between your ears. We can, we can label people. We can put them into pigeon holes. The fact that this hospital or this surgery, GP surgery cannot tailor make a solution for an individual is not that individual’s fault. So, don’t treat it like he’s a, he or she is just that. He’s a, he wants too much. He’s a nuisance. Listen to what he’s got to say, and I mean listen. It’s not his fault that you don’t have the resources. It’s not their fault that you, and I mean you in the meaning of XXX, that you don’t have the resources is not my fault, you know, people work hard, they pay their taxes, part of your taxes you pay to the NHS.
What governments do with the NHS is up to them. But don’t treat people like, and you might, if you treat people with respect, and that’s with working with disabled people that’s one of the first things that I learnt as well as choices and, you know, you treat people with respect and that goes all the way down the line, down the line when you’re talking, I, I really have felt like a naughty boy sometimes. And I’ve done something wrong and I’ve been called to the Headmaster’s office. I’ve been treated like a ten-year-old and I’m not a ten-year-old. I’m a fifty-seven-year-old struggling with his health and health and weight is part of that.
So, yes, health professionals, you listen and you, you don’t just go through the motions with somebody because you’re doing more harm than good. If you can’t help them, don’t give them false hope. “We’ll do this, and we’ll do that and in x months’ time you’ll be this,” because you set people up, you know.