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    • #16364
      Jenny Livingston
      Keymaster

      March is National Social Work month in the United States, so it seems like an appropriate time to give a shoutout to our CF social workers!

      I’ll admit, there was a time when I didn’t know what the point was of having a social worker in clinic. I’d talk with them and they seemed friendly enough, but I never understood the need for them.

      As both my health and my life became more complicated, I began to lean on my clinic social worker a bit more. I can distinctly remember a time when I was hospitalized and was facing problems at my place of employment. My social worker sat with me, helped me brainstorm, and together we came up with a plan to address my work issues. Turns out, it helped tremendously and my work situation was much better moving forward.

      Now, years later, my current CF social worker is one of my favorite people! She has helped me address so many issues related to both my health and life in general. She is full of resources and advice. She regularly helps me find the tools I already have within me to tackle and cope with the mental and emotional aspects of this disease. I have greatly benefited from having a social worker as part of my multidisciplinary care team (which seems like a tremendous understatement).

      Can you relate? Do you have a CF social worker? Have you benefited from their care? I’ve had conversations with people who’ve had miserable experiences with their social workers, and while those stories are sad to me, they are definitely welcome here as well! I am genuinely curious to know what your experience with CF social workers has been.

    • #16389
      Paul met Debbie
      Participant

      It’s not a part of my normal yearly visit, but if I request so, I can see a social worker who is part of the team.

      I only did so once, after having a particularly complicated phase in my personal life. She was a great help and we met a couple of times. It was very good to see one’s thoughts and behaviour mirrored back in a wise way. She put me on the trail of mindfulness, which had a profound and liberating impact on my life after.

      In the future, when needed, I will certainly seek their input again.

    • #16405
      W. Hoh
      Participant

      I’m so happy you wrote this post!

      I’m almost embarrassed to admit, that as a physician, I didn’t see the point of having a social worker on our team at the CF clinic at University of Pittsburgh… UNTIL I needed her.

      There are so many programs out there to help children/adults with chronic healthcare needs but you rematch need an experienced expert to navigate to system. THE SOCIAL WORKER IS THAT EXPERT NAVIGATOR!

      Also, licensed clinical social workers/LCSWs can practice as psychologists in most states. They’re very good at listening and helping to get you “hooked up” with a mental health expert if/when you need one.

      They may not get the respect they deserve, but they ARE very valuable member of any CF team. I think they should be there for every patient at every meeting. (Univ of Pittsburgh CF clinic has a clinical social worker there for us at EVERY visit and it has been extremely helpful!)

      Never be afraid to ask the social worker what they can offer to your care. An open-ended question like that may give you a surprising answer.

      Thank you all for taking the time to read my reply. And as always Jenny, keep up the great work!

    • #16407
      John F Schroeder
      Participant

      Social workers are an ABSOLUTE necessity on the CF Care Team. Early on in our family’s experience in CF, Social Workers were looked on as unnecessary by doctors and clinicians. They’d be asked to “fix” things when a patient or parents got “emotional.” But as the clinicians got to see how helpful Social Workers were they welcomed them with open arms. Social Workers do help “fix” things but they are also enormous fonts of information on coping with medications, nebulizers, who to ask about “whatever problem” you are having, etc. And the good Social Workers are also very empathetic. They GET what’s going on and work with patients to solve problems. And I don’t mean this as a slight against doctors and clinicians, at all. Most CF docs/clinicians I’ve known are very empathetic problem solvers too. But the combination of a doc and a Social Worker and other CF Team members, make a formidable team that helps people with CF and their parents and caregivers deal with the many “issues” faced by a person with CF. So THREE CHEERS FOR SOCIAL WORKERS!

      Disclaimer: My Wife is a retired LISW 🙂

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