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Building Trust In the Relationship with Your CF Clinic Team

This month, we are focusing on Healthcare and we are happy to highlight an important aspect of this subject: the Relationship with the CF clinic team.

We asked our CF blog contributors to share tips and advice on how they manage and build trust in their relationship with their CF clinic team. Their responses are shared below:

 

“The CF clinic team is like an extension of my family.  They are there in good times and bad, in sickness in health, for richer for poorer…hmm, sounds like a good marriage.  Well, it is. And, like any good marriage, you need to nurture the relationship.

Relationships are a two-way street with both sides having to communicate, participate and sometimes compromise even when they think they know best.  Having an open and honest relationship is extremely important, especially considering that your life may literally be in their hands. You may not always agree on the diagnosis or suggested treatment, but having the ability to question respectfully and express yourself honestly and productively is very important.

If what the team suggests does not make sense, will create undue hardship or does not sit well with you…talk to them about it. They are people first and foremost.

As many other persons with CF can relate to, I have been treated by many CF caregivers over the years.  Some were great, some were good, some were not so good! No matter what we feel about them personally we need to keep in mind they are there to help us and to keep us as healthy as possible.

Lastly, if you feel you have a conflict with a medical provider that cannot be resolved through respectful dialogue, tell someone on the team you trust. Or, speak with your hospital’s patient advocate.”

– Brenda Chambers-Ivey

 

“Building trust takes time.

I have been with my adult CF clinic for decades.  My trust was firmly set a long time ago.

We have grown together.  Open dialogue, group decisions and forthrightness and honesty, with a touch of playful banter, has strengthened our relationship.  I seek answers and clarification if necessary.  I trust the information and advice I receive from my team. I try to offer about myself as a person and listen when something is offered in return.

Though there is a different dynamic to this sort of relationship, I believe the relationship I have with many of my team members has evolved.  The passage of time and the importance of some of the information we share has enabled trust and confidence.  I value the rapport I have with my CF team because I am part of the team.

In regards to advice I have to share… be yourself, share about yourself, self-advocate and grow with your team.  Time passes at the same rate for all of us.  My team has extended my time and I am humbled by their efforts and dedication. “

– Alex McCombes

 

“I have a very open and honest relationship with my team and although they don’t always approve of how I manage my health they love my results. They trust me to know my body the best. I can contact them whenever by email or phone and it’s really great to have that support! “

– Rebecca Harder

 

“A hospital, doctor’s office, specialist and clinic are very much a business. The relationship you build is also very much the same as one with a local business in your community.

Trust is built through experience. I have worked in the outdoor retail industry for almost 20 years. People come to our small store, some I know through years of interactions and others are familiar faces. Many of our customers are regulars returning monthly, seasonally or every few years but still to a very recognizable face. Sometimes this is because they trust the advice I have given them or how I went the extra mile for them previously. This is the same with my medical team. I continue to seek their advice because in the past they have gone the extra mile, took time to get to know me, and on several occasions their recommendations have saved my life.

This isn’t always the case. Sometimes certain departments or other hospitals I have attended have not treated me with care or ignored my voice and made recommendations that in a few cases could have led to death if not for my CF clinic stepping in.

My best advice, if you find someone you trust and treats you well, stick with them. When things don’t go as planned or you are treated poorly, it may be time to move on. Specialists, nurses, and other medical professionals are a business. If they are great, let them and their boss’ know through thank yous, or comment cards and surveys. If the service is poor, do the same. Always try to be kind and respectful, even when you’re in pain, uncomfortable or being treated poorly. This is a lesson I continue to remind myself and learn with each time I visit.”

– Rob Burtch

 

“I think the best way to build a relationship with your clinic team is by being open and honest. Don’t be afraid to tell them how you are feeling, not just the answer you know will get you out of clinic the quickest. It’s better to deal with things as soon as they come up then to wait until it gets out of control. Many clinics have a lot of patients to see, so wait times between returned phone calls and emails can get long and when you aren’t feeling well that isn’t ideal.

Your clinic team has your best interests in mind; when first meeting the CF team, trust can be difficult to have right away but throughout time, and the almost guaranteed frequent visits to the hospital, you will get to see how they operate and where you fit in.

Don’t be afraid to voice your opinion…if you don’t understand why something is or isn’t being done…ask. This will make way for an easier dialogue between yourself and the team! You must be your own advocate, CFers tend to know themselves better than most other patients…so force yourself to speak up…nobody knows you better than you!”

– Meaghan Addante

 

“It’s a semi-difficult question to answer because I don’t feel I have much of a relationship with my team other than when I’m at clinic. That being said, I feel the clinic team are all well-educated and have my best interests at heart. I get along with them very well and they seem genuinely happy to see and talk to me.

I never see or hear from them outside of clinic, which is disappointing, but I understand they have their own lives and they can’t keep track of all of us outside of the clinic. I wish I had more personal relationships with the people who have taken care of me for so many years.

Trust is built in individual experience and an understanding of the code of conduct. My clinic members seem to keep my information between us which I appreciate very much. They typically seem to do their homework and review my case in depth before each clinic appointment so that when I arrive they ‘remember’ what’s going on with me. I’ve never had an issue with trust with my team.

My advice to other persons with CF is to ALWAYS give full disclosure of how you’re feeling. Never keep anything to yourself. And remember these folks are doing a job and aren’t really there to be your friend although they are definitely friendly.

My only personal disappointment is when a member of the clinic switched jobs or retires and I’m never given warning. It hurts my heart a bit because they have been my caregiver for so long and then suddenly they are gone with no more contact.”

– Tim Vallillee

 

“I have found that the best way to cultivate a trusting and productive relationship with my CF team is to be as honest and forthcoming with them about my health, my care, and any concerns that come up.

I used to assume that they would get inundated with questions from other patients all the time, so I would only get in touch when I was feeling sick. I have since learned that when I open up about questions, concerns, and updates, not only is my care improved, but my relationship with the team improves too!

Now the team knows they can trust me to be honest about what is going on with me, my voice holds a bit more weight when it comes to making decisions about my care. Also, because the team has made a habit of listening to my concerns, I trust them to know what course of action is best to take.

To sum it up: it goes both ways!”

– Terra Stephenson