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What can a social worker bring to your CF team? What support can they provide and what challenges can they help you navigate? We spoke with social worker Nick Alaimo to learn more about how social work can support people with CF.

 

What does a social worker do? 

It varies. If you’ve got a question and you don’t know who to ask in the team it probably is the social worker. 

It’s crisis support, counselling, advocacy within the hospital and external to the hospital, discharge assistance. They can try to link you with external community supports, be that encouraging linking with CFCC, or Centrelink or university disability liaisons. All those sorts of things are what social work does. And the crossover with psychology can be around coping with stress, dealing with changes, dealing with loss, providing counselling support. 

Psychology looks at a person, how you see yourself and from within yourself whereas social work is how you interact with all the systems around you. Be it all those things spoken about there—hospitals, Centrelink—but also family, community, education, work. 

The idea is by supporting, not necessarily doing stuff for people unilaterally, but hopefully doing it together, is to either share the burden or reduce the burden of whatever is going on. 

 

What can a social worker bring to the CF clinic team? 

What I’ve noticed or hoped to have been able to bring is an understanding, especially to the other clinicians of the context of the person with CF.  

The number of tasks that the medical teams, nursing, and dietitians, and physio, and pharmacists give people with CF to do is ridiculous. You can’t achieve it and live life. And so, it’s about trying to find that balance within the team and within the person. It’s okay not to be perfect, maybe some of your physio can be playing golf with your mates because that is something that brings you joy.  

On the practical side, it can be assisting with VPTAS, Centrelink, NDIS and those sorts of things. On the more emotional side it can be providing counselling support, crisis support, support around coping with stress or change.  

 

It seems like the social worker can be a conduit between the clinic team and the person with CF.  

Absolutely. And a lot of the time people will talk to us because they might be a bit worried about bringing something up with the doctor. And so, they’ll bring it up with us and then discuss what is the best way of approaching the situation.  

It’s important that the physios and dieticians tell you how to be perfect, and what to achieve and what the goals are, absolutely, but I see our role as seeing how you the person then fits in with that, where you are in life at that time.  

Maybe you’re starting a new job, which can be really stressful and so it’s working out what you need to do to be able to manage that stress and maintain your health in the best way possible. Or knowing you’ve got a holiday coming up and so things aren’t going to be perfect there and planning for that.  

If you've got a question and you don't know who to ask in the team it probably is the social worker.

Nick, social worker

Is some of your role also about helping people to build skills themselves? 

That’s the goal. That is the aim. Successful social work is when social work is not needed. It’s that self-advocacy and getting to a position where even on the practical things, you’re not needing the support to go through the Centrelink process—or hopefully getting to the point where you don’t need Centrelink. Or getting to the point where you don’t need this support and that’s the aim. But also, allowing people to have the knowledge and feel supported so if the wheels fall off, as they do for all of us at different times, there will be support there.  

 

And what about if something goes wrong, how can a social worker help then?  

The most basic part of social work is seeing the world through power and who has power, who doesn’t have power. And it’s my role to try and have it as much in balance as possible. And so, within the hospital system it is about saying, ‘Okay, how can I help a patient within the service and within the hospital more generally have more power in a way that fits in with the ethics and rules of the hospital’ and to balance that out as much as possible.  

An example of that might be something has not gone right, or you’ve had a clash with a doctor and so trying to support you to find out how you can best be okay with that. Sometimes it might not be worth the battle, you might be happy to move on or it might be pulling me in and having a chat with, let’s say the doctor or dietician or whoever it is. It might be helping you make formal complaints to the hospital or giving you information about going to the health commissioner. It’s about trying to balance that power in a practical way, but in a safe way for a person because there is a massive power balance within the hospital. 

So, it’s trying to empower people and allow people to feel safe to provide feedback in order for the service to get better. Because the problem is that you’ve got to come back and ask for help again next time and it’s a pretty vulnerable place to be if you haven’t had a good experience or something has been actually really bad, saying it has. There’s the rightful fear of consequences and it’s about trying to be practical about it, allay the fears and get whatever result the person wants.  

 

How can people with CF get the most out of the support that’s offered by social workers? 

The hard thing is understanding what we do but not being afraid to ask to speak to us. Wherever you are, if you haven’t met us, next time you’re in or have an appointment, ask to speak to us and just say hi, and have a bit of a conversation. 

Often the availability just might not be there immediately and so just being aware of that as well. But just asking and talking, talking as honestly as you feel comfortable with and knowing that it’s a process and that sometimes you just don’t get along and that’s ok. 

I always say that I’m the one person on the team that people can tell a go away and that’s okay. 

 

What would you like people with CF to know about social work? 

One that we exist. That we’re here and we’re here to assist. We’re part of the multi-disciplinary team, and we’re here to help people in a wide variety of ways, not just about CF stuff. And also, to acknowledge that there’s systemic issues that go along with being chronically unwell and we’re here to try and balance that power. 

If you’re ever hesitant to speak with social work or to speak about a topic to social work, then it’s okay to say so. It absolutely should be about us respecting what you want and need. And realistically, I think the only time that we should be a more insistent is if the nurses or doctors are saying, ‘hey, someone’s really in trouble or really struggling’ then we might be a bit more insistent, but we should be saying that to you. 

We should be there to give people information and respect their decisions and their choices, whatever that is. 

How a social worker can support you

CF can present many challenges that are not always directly related to maintaining or improving health. Social workers are the professionals who can support and assist you with resolving issues.

This story was published in May 2022. If you would like to share your story, please contact us at [email protected]. We’d love to hear from you and so would our readers.