Preparing for appointments

I’ve recently retired after 30 years of medical practice, having seen thousands of patients in that time. Over the last 18 months, I’ve spent a lot of time on the other side of the desk in the patient’s chair. Most of that has not been related to Parkinson’s, so it’s been eye-opening for me to be in that position. I’ve often felt like I’ve been in a “limbo state”, with colleagues treating me a little different to a patient who is not a doctor. That has not always been a good thing! The upside of my experience, which included a bout of COVID, mild depression, five operations and of course, Parkinson’s, is that it has given me a lot of think about regarding doctor-patient interactions.

I’d like to share some suggestions about how to make the most of your next specialist visit; these pertain mainly to Parkinson’s, but they could also apply to other specialties. Appointments with specialists like neurologists tend to be infrequent, typically every 6 months; sometimes more, sometimes less. I observed some people being quite nervous about their visits, speaking quickly and trying to make the most of every minute, only to forget a crucial question they wanted to ask. It’s important to take some time to prepare. I’d suggest the following:

In the weeks before

• Make sure you have an up-to-date referral – this will usually mean a visit to your GP. The referral is an integral part of the Australian Medicare system, which should help enable better communication between GPs and specialists. Without a referral, you will not be able to claim a Medicare rebate.
• Test results – If the specialist has ordered tests (e.g. scans, blood tests), make sure there is plenty of time for the results to become available – I’d recommend about a week. Never assume that the lab or radiology firms will get the results to the specialist. In my private practice, I’d always look up the results the night before to ensure I was ready for the consultation and to avoid wasting precious time during the consultation.
• Forms – If you have paperwork that needs completion, e.g. NDIS, insurance forms, or driver’s license renewals, let the specialist know this before the consultation. Often they will need to ask you questions to complete these forms. Don’t assume they know what your occupation is, and what it involves – insurance forms often ask for this. I now understand how important these forms can be; it’s very stressful if your driver’s license is due and you don’t have an appointment. It’s also frustrating for the specialist to be given a huge form during the last minutes of a consultation that needs to be done urgently.

On the day

• Make sure you leave plenty of time to get there. Parking is at a premium around most major medical centres, so allow extra time, especially in the middle of the day. If you are running late, call the office or clinic; that way the doctor can readjust their list. Sometimes it may be better to reschedule than to see a doctor who is rushing.
• If your appointment is late morning or late afternoon, it usually means you are one of the last patients to be seen in that specialist’s session of work. Most specialists tend to “get behind” the clock as the session progresses, so don’t be surprised if your allocated time comes up and you are still waiting to be called. Make sure you communicate with the secretary; good secretaries will call you to advise on “how things are going and if the doctor is running on time.”
• Emergencies happen, and sometimes an appointment becomes more complicated than expected, so the doctor gets behind on time. Rather than getting upset, consider the extra time and attention you would want if something came up that needed extra time. If you are last on the list, you may get bonus extra time; I would sometimes schedule a complex follow-up last, so there was no stress about running late and making the next patient wait.
• Wear comfortable clothes that you can remove and put back on easily to allow for examination. Things get missed if specialists don’t examine you thoroughly, and usually this requires proper exposure.
• Bring someone with you – spouse, carer, friend, support worker. Another set of eyes and ears is invaluable.
• Make sure you bring an up-to-date list of medications with doses and for Parkinson’s medications the times when you take them. The specialist will usually be happy to write scripts for Parkinson’s medication but may not be comfortable with medications for other conditions they are less familiar with.

If you are taking L-dopa, it will be useful for you to think about a few aspects.

1. Do you feel it is making a difference in motor (movement) symptoms, think of examples e.g. effect on handwriting, stiffness, slowness.
2. Can you feel the effect of c/l coming “on”, or wearing “off”? e.g. do you usually take your pills at 6am, 10am, 2pm and 6pm but find that you feel like you need your next dose earlier than before?
3. When do you take medications in relation to meals? (Especially in relation to protein consumption, as even milk in your tea and coffee can interfere.)
4. Have you noticed any difference in your symptoms if you have been late on a dose or missed a dose?
5. Have you had side effects, e.g. nausea, or light-headedness?

Don’t forget to think about non-motor symptoms:

• lack of motivation (e.g. apathy or loss of interest in things you used to love doing)
• changes in mood (e.g. unexplained anxiety and depression)
• intolerance of extreme temperatures (e.g. can’t regulate your temperature, getting too hot or too cold in certain situations)
• sleep disturbances (e.g. restless legs syndrome, REM sleep behaviour disorder, nocturia, insomnia)
• bladder and bowel problems (e.g. constipation, urinary urgency, incontinence).

Symptom tracking

It may also be useful to think about how your overall symptom control compares to 3, 6 and 12 months ago, and before and after any medication changes. Think about any change in specific activities you regularly do over time, e.g. how easily a regular walk might be, whether you can put your pants on whilst standing up, and can you still do up buttons unassisted.

• Importantly, bring a written list of questions, with the most important ones at the top of the list.
• Don’t be afraid to ask questions. If you don’t understand something, be sure to ask for further explanation.
• At the end of the consultation be sure you understand if there are to be any changes in medications or tests. Be sure to ask about the side effects of new medications.
• Make sure you have a means of making contact before the next appointment. Most specialists should be prepared to be contacted through work e-mails. Don’t expect to be given a private e-mail address or mobile number.
• Ask for a copy of the letter from your visit to be sent to you; this will help remind you of what was covered and is useful to keep in your records. Also, ask for any of your results to be copied to you as well.

Reprinted from a Parkinson’s WA article with permission from author David Blacker AM, MB BS, FRACP,  Medical Director, Perron Institute, Parkinson’s Australia Board member, Board member Parkinson’s WA