Saturday, 19 May 2012

Doc Talk: Communicating with Your Health Care Team About CFS

Video uploaded by SolveCFS, Nov 2010

Cindy (Lucinda) Bateman, MD, gives some tips about approaching health-care providers - namely your doctor - whenever you go to see them about your condition. Here are the summary notes from the webinar:

- Find a good Primary Care Provider (PCP) - should be personable, open-minded, and up-to-date. It is NOT essential that they are necessarily experts in M.E./CFS.

- A good PCP coordinates health care and should pay attention to: prevention, urgent care, diagnosis, management, referals.

- Specialists should stay FOCUSED.

- Concerns expressed by PCPs about treating M.E. patients: "time-consuming" and clogs the schedules, thus affecting turnaround quotas. Patients have "a million complaints." The presentation of the disease can be very complex, and there is a general lack of knowledge in how to diagnose and treat these patients.

- When you go to a doctor, BE PREPARED. Prioritize your issues. Only aim to present one issue in one session. If it helps you organize your thoughts, write down a short list of what you want to say.

- Arrive early in the morning, since the PCP is likely to be less tired. Alternatively, if you are able to wait until the end of the day, there will be less time pressure.

- Inform the PCP in advance of requesting a prescription refill. Fill out any forms in advance. PCPs don't get paid for any paperwork outside of your appointment. Doctors are likely to take better to you if you are known as an 'easy' patient.

- If you suffer from fibro, offer a pain diagram. Color in the parts of the body that are hurting. This is much easier for the PCP to comprehend than just saying to them "My body hurts all over."

- Keep a track of all the vaccinations, medications, and medical visits/history that you've had. Use the log to remind the PCP when e.g. your next tetanus vaccine is due, or when you last had a reaction to a particular medication. PCPs will not automatically remember everything that you want them to.

- Carry an up-to-date list of all the medications you are taking. Include drug name, pill size, daily intake, purpose of drug, side effects. If you are on many medications, divide the list up into categories - e.g. 'pain drugs: (list)' 'allergy drugs: (list)'

- Some PCPs have a belief that M.E. patients actually don't want to get better. One strategy to show your PCP that you are motivated is to try and streamline your medication. Get one drug that covers multiple symptoms if you can, rather than multiple drugs for multiple symptoms.

- You need to show your PCP that you are taking their advice on board, otherwise the PCP will soon get frustrated with you and might not be so motivated to help in the future. Acknowledge that you have been trying out suggestions in your next session, and give positive feedback and thanks.

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