Experiences of treatment

NOTE: Quotes are presented word for word apart from minor editing for readability and clarity. Identifying details have been removed. Square brackets show text that has been added or, where ellipses (three dots) appear, removed. For example, ‘as soon as I have that first sip, a change comes over me and that’s all that matters […] I just feel the physical buzz when I have the first drink.’

The men interviewed for this module use a variety of treatment services including counselling, support groups, in-hospital withdrawal management and home-based withdrawal management. Nearly all the men interviewed receive medical treatment for alcohol-related health problems at an out-patient clinic attached to a public hospital. Some participants describe difficulties accessing other forms of treatment, such as medication-assisted home-based withdrawal management or psychiatric counselling. Most explain that accessing medical care for their health conditions through their general practitioner (GP) or emergency service happened quickly. For most of our participants, the medical focus on practical advice around improving nutrition and diet and exercise is preferable to psychological therapy. Treatment was sometimes stressful and frightening for those undergoing diagnosis and medical procedures for their health conditions. For example, Arjun [late 30s, Indo-Fijian, unemployed but previously worked as a chef, no drinking in last six months] describes drinking more to manage the stress of starting treatment, while John [60 years of age, Australian, retired, drinking less] describes treatment as ‘scary’. Some say the constant monitoring and support from medical staff, especially nurses, helped them feel more comfortable and at ease. For example, John [60 years of age, Australian, retired, drinking less] explains that his nurse liaises between different clinics and health professionals on his behalf and helps him navigate the busy hospital. He says, ‘I don’t know what doctor to call in this place because I’ve seen about four of them, but I contact my nurse and she contacts the correct doctor. All of a sudden, I get a text message or a letter telling me I have to be here at so and so [time …] I’ve got appointments in the near future [that] I’ve got to go to’. Some describe going through treatment a few times before becoming seriously concerned about their health conditions, or being able to drinking less.

Accessing treatment

Most participants enter into medical treatment through their GPs or emergency services.

Jakub [mid 70s, Polish, retired, drinking less] explains that he was taken to the hospital after drinking and experiencing heart problems. (Read his personal story)

I lost consciousness. It was connected to my heart and I ended up [at the hospital] […] after drinking, and I was taken to [the hospital]. I wasn’t too drunk, so the ambulance which arrived and people working in ambulance [only] realised I had a problem with my heart. So, despite [that] I was a little bit drunk, they had to look after me. So, they took me to Emergency Department […. and] [it was the first time I realised] I have a problem with my heart, which means heavy consumption affected my heart. It was the first time. [It] was not really [a] heart attack, but it was like my heart was working too fast […] alcohol drinking can cause your veins or other things to be narrow, you understand that, because something is deposited inside, not only because you’re drinking, also because of fat, but they find out drinking makes the heart work overtime, let’s say like this. This is why they found out I have got problem with delivering to my heart enough blood and enough oxygen, and like I said, partly it was because of disease which [is] connected to cholesterol, but also because of using too much … drinking too much alcohol which they explained to me makes my heart working too much. At work and after work, you sit to relax, alcohol makes the heart beating faster. After this first episode, after treatment, someone from […] the Department of Drug and Alcohol Abuse or something, had seen me and he explained to me what is availability to do something with my alcohol.

Others, such as Michael [early 50s, Australian, works in retail, no drinking in last three months] accessed treatment through their regular GPs. (Read his personal story)

Basically, I had a bleeding problem in the rear end and my doctor referred me to [the hospital]. When I came in […] they put me in to have banding on the haemorrhoid and, yeah, it basically started from that […] That was last year. They turned around and did… well my doctor found our first. He did the blood tests and told me I had a problem, but they did a scan [an ultrasound] […] and that’s when they told me I had the cirrhosis.

Many of the men interviewed discussed having positive experiences of treatment. For some, having regular treatment and monitoring was considered a routine part of managing their health. For example, Anthony [late 50s, Australian, works in hospitality, no drinking in last three months] says, ‘Yeah, good health to me means coming in here and following up with [the treatment service].’ Nearly all described active referral, coordination and follow-up from relevant health professionals and between health services as essential.

Arjun [late 30s, Indo-Fijian, unemployed but previously worked as a chef, no drinking in last six months] explains that receiving treatment through a clinic in a public hospital is convenient because there is coordination between his GP and the clinic and the different services within the hospital. (Read his personal story)

All my files and […] records are here. They know exactly what they’re doing in terms of [thinking], ‘Okay, we’re going to get you in for this, this, [and] this.’ [If] I go to my GP, if there’s a serious matter, she will always refer me. ‘Okay, you’ve got to go into ER.’ […] Yes. I mean they can refer me to different sections – getting pathology done and things like that. But it’s […] within the [one] system and I don’t have to go here and there, back and forth. [I] just come here, [and] get it done, and it’s sorted out […] I found that, with the nurses, because they were there 24 hours a day and they knew my situation […] that was a really helpful thing to go through. Because at least you have them 24 hours [a day], while family members or friends [are only there for an] hour or so […] I found a lot of support there.

Anthony [late 50s, Australian, works in hospitality, no drinking in last three months] describes how the nurses always managed to find him even when he moved house. (Read his personal story)

Yeah, I would still get [the appointment reminder] […] even if I changed phones or […] lost my phone because I was drunk or whatever. They would eventually track me down, you know, by the address […] They’d send me a letter or they’d send a letter to my doctor. You know, I couldn’t hide.

Sometimes the friends and families of our participants were instrumental in encouraging them to access treatment. Some participants found attending treatment challenging when feeling ill from drinking.

Dylan [late 40s, Australian, unemployed but previously worked in construction, continuing to drink as usual and is on a methadone program] describes one incident when he didn’t seek help because he was bed-ridden for three days. (Read his personal story)

Yeah, when I was drinking bad, I was drinking wine. I don’t now drink wine, but yeah […] Because it made me real sick at one stage, and I just thought ‘no more wine’ […] I was bed-ridden for about three days, spewing up, diarrhoea, yeah alcohol poisoning I think, I don’t know. I didn’t go to the doctors, but yeah, about three days I was really crook. [I was] too sick to get out of bed really. I didn’t even come in to get my methadone, that’s how sick I was.

Diagnosis and treatment

Experiences of diagnosis, medical tests and treatment were often complex and intense. Most men describe having pain and other health problems they didn’t realise were alcohol-related or serious until they had treatment. Most speak about the need to be individually motivated to change for treatment to be effective.

Wayne [late 50s, Australian, unemployed, continuing to drink as usual] explains he needed to stay in hospital for the staff to diagnose his health condition, and says his treatment is painful and upsetting. (Read his personal story)

My falling over […] was very serious, and my daughter brought me to hospital and the doctors couldn’t figure out what was wrong with me. There was two of them […] They checked my pulse and kept me in hospital for a few days to see what was going on. The other thing is I don’t think people realise how painful and upsetting it is to get the taps put into your tummy […] They tap your tummy to get liquid out. I came in two weeks ago for a tap and I wasn’t carrying any water, I’m not carrying any weight, I’m not carrying any water, there’s no water in there inside my peritoneal cavity, so I didn’t have it. But I’ve got a tap organised for next month and I will turn up to that to see what happens. I’ve also got surgery on Thursday for my portal vein* [which] is bleeding. So they’re going to go in with an endoscopy and put some super glue in my portal vein to see if that’s going to help my symptoms, stop [it] bleeding into my stomach.

Note*: Wayne means that he is undergoing surgery on some veins in his oesophagus caused by the cirrhosis, as they sometimes bleed.

Arjun [late 30s, Indo-Fijian, unemployed but previously worked as a chef, no drinking in last six months] underwent an endoscopy and experienced life-threatening side-effects from a liver biopsy. (Read his personal story)

I came into hospital in 2017 […] vomiting blood. I got that rectified [and] had [an] endoscopy done just to seal the bands again [on a gastrointestinal perforation]. Then about a year later, I had a tap put in my body and, at that stage, I was basically told I wouldn’t [live] past the New Year’s. I wouldn’t survive it […] I had many specialists come and visit me. They did a biopsy on my liver. I had a side-effect from that where I couldn’t breathe, couldn’t, like, do anything, then they automatically put the mask and everything on me to provide oxygen. Then they realised, okay, it was from the biopsy. Then they recycled my blood for the kidney […] The thing also was when this situation was happening, literally I was considered dead. But, every morning I woke up, and I kept moving forward and I surprised a lot of the specialists [in] what I’ve achieved. Now it’s more of a stable condition.

Bryan [late 40s, Australian, unemployed but previously worked in business, no drinking in last three weeks] went in for a cardiology problem and the doctor told him he had a fatty liver (from heavy drinking). (Read his personal story)

What happened was I have a family history of serious cardiology problems. Mum’s had a bypass and all that sort of stuff. So, I went to a cardiologist just to get it checked out and I had a … it was an angiogram, but an angiogram through the MRI, not through the traditional up the groin area. Then he told me I had a surprisingly good result. He told me, ‘I thought you were going to have a shit result […]’ and I said, ‘Just lucky, I guess, mate. I’m born to party!’ [laughs] you know. And he said, ‘Well, why don’t you use this opportunity of having a good heart result and just pull your head in a bit?’ He’s a bit of a lad [the cardiologist]. And in the end, he said, ‘Right, now there’s something else that’s showing up.’ He goes, ‘We didn’t look at this, but they noticed it.’ He said, ‘Your liver, it’s showing that it’s got this and that, and there’s fatty tissue in that.’ He goes, ‘Basically, it’s saying you’re fat,’ and I said, ‘Well, thanks, doc’, you know. So, we sort of laughed and he said, ‘Why don’t you, you know, start pulling your head in a bit? You’ve had a good result. Try and use it as a positive’. So, he told me I had a liver problem and then I had a liver blood test, and I’ve been watching my blood test for my liver numbers creep up over the last couple of years.

John [60 years of age, Australian, retired, drinking less] explains that his drinking resulted in unexpected weight gain, which was actually found to be caused by liver cirrhosis and ascites. (Read his personal story)

I didn’t know [it was] cirrhosis straight way. It’s when my stomach started to expand. I was getting weak and I was losing weight rapidly and I was concerned. ‘Oh, I better eat more,’ and I wasn’t. I got to eat more and I got myself scales and I’m losing a kilo by the day and I went, ‘Whoa! This is not right.’ So, to compensate for it, I drank more. [laughs] Stupid as it sounds, but I did […] hat’s when my stomach started to expand and I went, ‘Oh! I’m getting a beer gut,’ and I’d never had one. It wasn’t. It was ascites, and you can imagine the size of my belly with 15 litres of liquid in there, and that’s documented. Fifteen litres they took out. The doctors were surprised, and then they took another three litres after that, and they had me book in for more drainages, but I haven’t needed it luckily because [when] they drained it, it started to hit me. It was ascites. That’s when I was told I [also] had cirrhosis.

Interactions with health professionals

Most men say that staff attitudes are important to their experience of treatment. Some say the attitudes and behaviours of key health professionals are essential to their progress. Arjun [late 30s, Indo-Fijian, unemployed but previously worked as a chef, no drinking in last six months] explains that the ‘care’ from staff gave him ‘strength’ in a time of ‘transition’. Several of the men interviewed describe instances where health professionals’ attitudes could be improved by better taking account of their priorities and perspectives.

Bryan [late 40s, Australian, unemployed but previously worked in business, no drinking in last three weeks] explained that Valium helped him when withdrawing from alcohol and managing cravings, but felt his doctor’s perception of him would prevent further prescriptions. (Read his personal story)

I suspect [the doctor wouldn’t give me Valium because] from my local doctor’s point of view, it’s because I live in a high-risk area and I’ve told her that I’ve been a party animal for all my life. I’m 48 now and I’m still single and no kids. So, it gives you an idea of what kind of life I’ve led. I’ve always had good jobs, but I’ve always liked to party as well and, yeah […] She was worried about that, yeah. Because the other day [when] she said to me, ‘Now, how many have you got left?’ I said, ‘I’ve got one sleeve left.’ She said, because she only wants me to take it when I absolutely need it now, the few that I’ve got left over after the detox, which is fine. I understand that. I’ve been pretty good. I don’t know. I think they were worried that maybe I was going to go home and get on the piss and suck down some Valiums and get smashed, but I wanted to get well. It’s not a matter of access to drugs, it’s a matter of, ‘Bloody hell! I’m crook.’

Dylan [late 40s, Australian, unemployed but previously worked in construction, continuing to drink as usual and on methadone program] says that when he attends appointments with his GP he receives education about the liver but he would rather just get a new methadone script. (Read his personal story)

[I see my doctor every] couple of months. Yeah […] the doctor here is very thorough […] Especially with [the] liver, and he really tries to get it into your head, you know what I mean, all the damage that you can do […] Like he always shows you the liver, you know what I mean, the model liver and what it does yeah […] Well I already know it really, yeah. [It’s] more annoying [laughs] [… I’d rather] just get what I need done and yeah, that’s it […] Just [a] brand new methadone script.

In the following video, Wayne [late 50s, Australian, unemployed, continuing to drink as usual] suggests that his doctor ended counselling because it was unproductive. He describes clinical encounters where he was unsure of the aims and value of the encounter. (Read his personal story)

Well, I tried to see a psychologist but it didn’t work, because I didn’t know where she was going to and from with it […] I didn’t understand it, because I don’t know where it was going, I don’t know what she was doing, she was just asking me all these questions about my family and I said, ‘How relevant is this to me being here?’ […] The same as the addiction unit [at] the hospital. I went twice and we couldn’t figure out what I was meant to be doing there. […] He asked me the same kind of questions, which I found really strange […] it was all about my family, my mother and father and, I mean, she was going, ‘Does your mother drink, does your father drink? Do they smoke, do you smoke?’ There was none of those questions, like ‘Where were you born, what triggered this latest drinking bout […] how often do you do this, how often do you do that? Do you have any problems at home because of it?’ […] I just didn’t bother following or making appointments to go to the disability [addiction] clinic or the disability [addiction] doctor. I didn’t make any effort after that.