20 October 2020

How patients want their healthcare team to communicate

Clinical Patient Perspective

Effective communication is an essential part of quality healthcare. Doctor-patient communication is much better than it used to be but patients say communication between healthcare providers can leave a lot to be desired.

Most healthcare practitioners spend the bulk of their day communicating with patients. For the most part, you are all very supportive and good at discussing things like symptoms, results, and treatment plans with us and we appreciate it.

However, we at CreakyJoints Australia regularly hear from patients who experience poor communication between their doctors. This can cause treatment delays, stress, and can have serious consequences, especially regarding medications.

DOCTOR-PATIENT COMMUNICATION

Robyn: “My experience has been a positive one. I feel along my journey, apart from one specialist, I have had very good support and my GP and specialist were on the same page … I think that it is important for doctors to listen to what their patient wants to do in their life and (learn about) things that are making it hard for them to live a reasonably normal life.”

As more practitioners use a patient-centred approach these days, our experiences have mostly been similar to Robyn’s. But … we still need you to do better when it comes to listening to our feedback and overall needs. We are not our conditions; we are people first.

We also need you to share detailed information about our health and treatments with us as much as possible. Yes, this may not be feasible with all patients and some don’t want to know all the details. For  many of us, though, that is one way we cope with our conditions. Information is power.

COMMUNICATION BETWEEN OUR TEAM MEMBERS

Good communication and shared decision-making between all the members of our healthcare team (including allied health practitioners) is just as important as good communication with us. Again, we know that most of you get it right most of the time.

Yet there’s also no denying that some of you do drop the ball in this area at times, even if it’s unintentional. Seemingly minor things like forgetting to check our medical history or consulting with our treating doctors before prescribing medication or making a diagnosis can have serious consequences for us.

Here are some examples from members of the CreakyJoints Australia Patient Council of things that can and do go wrong.

Shannyn: “I find one of the biggest issues is doctors and specialists not having the same information or files are incomplete. Repeat tests then get done. Or, one doesn’t have the whole picture and you need to provide the information yourself and, sometimes, re-attend.”

Naomi: “I’ve had experiences where the specialists talk with each other but don’t involve me in the picture. I recall overhearing doctors talking in the hallway while I was a (hospital) patient and discussing my history of my infection. I could clearly hear they were getting details wrong and was mad that they were not involving me in the discussion as it could have saved time and made the information correct from the start. When they did come to talk to me I told them off for not involving me in the treatment plan FOR ME and that they had key information incorrect, which they should have simply just asked me as I was only 10 metres away!”

Rosemary: “I have multiple conditions and medications. After one surgery, I was put on an anti-fungal medication for life and had follow-up appointments for a few years with one specialist then didn’t see them for ages. In the meantime, I’d been experiencing embarrassing hair-loss which was attributed to one of my necessary arthritis medications. It wasn’t until I happened to see that specialist again for a different reason I learned I could have stopped taking that anti-fungal medication five years earlier as it was no longer recommended for life. I also learned that it was a known cause of hair loss. None of that information was passed on to me or my rheumatologist so I had five years of unnecessary side-effects for no benefit.”

WHAT WE’D LIKE YOU TO DO

By highlighting examples like these, we hope we’ve reminded you to be extra diligent when you share information with us and with other members of our team.

We need information to be shared promptly and accurately and it needs to be accessible in times of emergency. This is especially true for information regarding pain management, allergies, and contraindications. Ideally, we’d like this information to be available on a common platform, such as My Health Record.

We understand that getting all the relevant people to talk with each other, particularly in a hospital setting, is also difficult. Managing chronic, complex patients takes extra effort so perhaps having a kind of complex disease coordinator in clinical settings could help to streamline communication and make our care more efficient.

Above all, please check your facts with us whenever possible before sharing information with our other healthcare providers and share copies of reports and correspondence with us if you can as well.

Finally, we recognise that we also need to be active players when it comes to the communication surrounding our care. We need to keep our own notes regarding our medications, appointments, and outcomes and speak up if things don’t seem right. When we all work together, we can achieve better outcomes more often.

Rosemary Ainley wrote this article on behalf of the CreakyJoints Australia team.

CreakyJoints Australia would like to thank Rheumatology Republic for this opportunity to share the patient voice within the Australian rheumatology community. creakyjoints.org.au