Getting help with appointments

[Sarah Tee]

I’ve recently realised how impaired I am at medical appointments. I just cannot speak up or correct people or deal with all their nonsense “on the spot”. I really need someone to speak for me, but I can’t think how to find anyone.

My dad (my only family nearby) does his best but he doesn’t know all the fine details of my medical stuff, nor can I expect him to.

A friend who I am sure would help is sadly recently bereaved, so I can’t ask her. Other friends are too far away or have health concerns of their own.

Thus far the best I can do is a letter from my specialist describing my condition and a “To whom it may concern” from me stating that I need disability accommodations as per our law here, with one of the accommodations being the ability to ask questions after the appt with no extra charge.

How has everyone else dealt with this type of situation?

[GasconAlex]

A list helps. Even with a person having a list with what you need from the appointment helps. 

Leave gaps to make notes and if you are really struggling you might be able to  give it to the doctor. 

I also have a truncated medical history available but because it's huge and complex in my case I don't take it out unless asked for something from it.

In some countries, I don't know about Australia, you can have either a social worker or a volunteer from a local disability or medical charity who might be able to go with you. You might find someone sympathtic who is willing to help you- if you are lucky.

Here I get a fairly generous mileage back from the government for going to appointments further afield so this can be used to compensate friends or volunteers for their time and petrol.

Not much help because it's really difficult being ill on your own, I'm lucky my wife helps lots because I  started making stupid errors in appointments when I was on my own in the  appointment.

 

[Pistol]

@Sarah Tee Always make a list of questions. I have a running sheet that I jot down anything that comes in mind and then write it up neatly before the appointment. Once my sister from Germany flew in to see Dr Grubb. We made an extensive list of symptoms, readings and questions. Her english is not so good, so my husband ( who is familiar with dysautonomia since I have it ) came along to translate. They handed him the list and hDr Grubb went through it item for item. At the end she left knowing that all her questions were addressed, although not all of them could be answered. 

[Sarah Tee]

@Pistol and @GasconAlex, thank you for the suggestions.

I have been training up my dad on the finer points of everything. He is doing his best.

@GasconAlex, I’m glad your wife can help you.

I have also been looking into getting a support person to accompany me. But it would be very hard for them to deal with the detailed medical stuff.

My main problem is that when doctors say weird or stupid stuff, my mind goes into “boggle mode” and I simply can’t reply.

I have identified one source this – badly written referrals. My dad is now checking all referrals. We have been shocked at just how bad they are.

[MaineDoug]

I share your concerns and difficulties during medical appointments. Part of it is, there is just SO MUCH! So many symptoms, so many changes, so many diagnoses, so many medications (24 right now for me), so many questions, such a lack of medical experience/knowledge!

 I also use lists. One additional possibility: my providers give me the option of having someone else phone in to my appointments. Just a thought!

[Sarah Tee]

@MaineDoug, it is a lot to manage, isn’t it.

I had an apoointment yesterday and it went okay, so I’m feeling a bit better about it all.

[MTRJ75]

Whenever something new pops into my head or I see something online that I want to bring to the attention of my doctors, I put a note in my phone. I have a different note for each doctor. You can also take notes this way at the appointment. I've frequently asked doctors to write stuff down for me too. 

There are now actually medical coordinators that do this stuff and more for patients for a living, but it does not seem to be a covered expense.