One of the most important ways you can stay healthy is to be an active member of your own health care team. One way to get high-quality health care is to find and use information and take an active role in all the decisions made about your care.
Research has shown that patients who have good relationships with their doctors tend to be more satisfied with their care – and to have better results.
Around 80% of the information your doctor needs to make a correct diagnosis comes from what you say to him/her. The remaining pieces of the puzzle are found when you are examined and have tests carried out.
This verbal information, ‘the history’, is very important and is mostly obtained in two ways – the first is when you answer your doctor’s questions, the second is when you say things without being asked.
Never be frightened to give your doctor information; something you think is insignificant may be just the piece that cracks the diagnosis.
Some of you had fantastic tips to ensure that you don’t forget an important piece of information during your appointment;
• “Take a list of medications and latest symptoms. It saves time and makes sure you don’t forget”
• “I have started writing things down weeks before I go to any appointments. I also found it good to print photos as you never have the rash or swelling or anything else when your appointment is due….The Dr said it was a great idea and to keep it up.”
• “I start to make a list a good few weeks before an appointment, with things that I want to bring up, because as we all know with the brain fog, it won’t stay there for long!!!”
• “At the height of my most recent flare in April, I developed really bad sores on my lips, 4 different kinds of rashes and blisters all over my body and also visible, swollen red inflammations in various joints. It was therefore easy to get photographic evidence. I went to the rheumatologist, put my laptop in front of her and said: this is my story of the last month. 30 pictures later (which equals 30 seconds later), I was able to give a powerful presentation (showing her much more than I would be able to tell her in half and hour – therefore saving a lot of time and she could see how severe it was). I was immediately sent to the dermatology department (no appointment – not even a referral) and a biopsy was done on the same day.”
• “I always have a list with me that I’ve gone through with my husband as well.”
• “I keep a diary of things, when the pains start, where the pains are, how the meds make me feel – as I’m currently trying a few…”
• “I’ve taken to photographing swellings/rashes on my phone, as sometimes the symptoms can be short-lived and might not be there for an appointment. My rheumatologist has found this helpful”
• “I take someone along with me. She is a great friend and attends with me when I go to the GP and Rheumy. If I forget things to mention then she can prompt me.”
• “Whether I am seeing my GP or a consultant, I always make a note of what I want to say and have learned to make sure that I manage to say it. I have learned in the past, if you don’t, they are always too busy and the time you get to see them seems so short. This way, at least you have done the best for yourself that you can”
Patients and doctors are assumed to speak the same language, but sometimes they don’t. Doctors often use technical language and some words, which may mean one thing to him/her, but may mean something completely different to you.
That’s why it is so important to spell things out and not be embarrassed if you don’t understand something. Nobody will think you’re stupid. It makes everyone’s lives easier and can avoid problems. Similarly, if your doctor asks you what you mean when you say something, then try to explain it in a different way so that he/she understands.
Here are a few of our top tips to help you and your doctor become partners in improving your health care.
• Give Information. Don’t wait to be asked.
o You know important things about your symptoms and your health history. Tell your doctor what you think he/she needs to know. Doctors are human too and may forget to ask you about certain things.
o It is important to tell your doctor personal information – even if it makes you feel embarrassed or uncomfortable.
o Have any medicines you are taking with you – or a list of your medicines – include when and how often you take them and what dose.
• Get Information.
o Ask questions. If you don’t, your doctor may think you understand everything that has been said.
o If it will help, ask your doctor to draw pictures to explain things.
o Let your doctor know if you need more time. If there is not time at this visit, ask if the practice nurse can help you or make another appointment.
• Take Information Home.
o Ask your doctor for written instructions, particularly if being prescribed new medication.
o The surgery/hospital may have leaflets that can help you. If not, ask how you can obtain these.
• When you leave the Surgery/Consulting Room.
o If you have problems with your medicine or your symptoms worsen, make contact with your doctor.
o If you have had tests and are expecting to hear from your doctor, but do not; ring the surgery or consultant’s secretary.
o If your doctor said you need special tests, check that these are booked.
o If your doctor wants you to see a specialist, make sure you are referred.
• Remember.
o Be honest, when you tell your doctor how you feel, say not only where you are hurting, but for how long you have been hurting too.
o Tell him/her how you feel about your condition and treatment. If you don’t want to take a treatment, it is better to say so and discuss other possibilities than to go away and not bother with it.
o Your care will be much more successful if your doctor knows how you are feeling. You don’t have to say you’re ‘fine’!
o If you are upset about your condition, talk to your doctor. He/she may be able to recommend a counsellor or psychologist who can help you deal with the emotions you are feeling and any decisions you may want to make.
Some other tips that you sent us included;
• “You have to be quite firm with doctors and know how to get what you need. Don’t be a yes man – question what is being done, but take the medication you need”
• “I found greeting them and asking how they are puts them off guard and usually gets the consultation on a more even footing”
• “Taking a friend or relative seems to focus the doctor’s mind on being more attentive…”
• “I changed my GP a few months ago because my old one openly admitted he knew very little about SLE or APS, so I was teaching him. My new GP has an interest in SLE and APS and so is eager to find out all she can”
• “I have managed to get a referral to a new consultant as my old one didn’t listen. It is important to make sure you are being listened to”
• “I keep a box file dedicated to each clinic, with a brief log in each that lists my treatments etc. chronologically. I begin appointment preparation for each clinic by reviewing and updating the right log. My aim is to become so familiar with my pattern of relapsing/remitting symptoms relating to each clinic, that I barely need to look at my notes, so that, if I’m feeling well enough to ad lib, I can look the doctor/consultant in the eye and say, ‘hello, how are you today?’ That usually surprises them: It seems to wake them up and make them actually look at me as a person instead of a medical problem…”
Thank you so much to everybody that submitted their tips and experiences for the article this month. We apologise if we were unable to use your submission.
If you’ve got an experience of a doctors’ appointment that you’d like to share with us, please leave a comment below. Also, let us know if you find any of the advice in this article helpful for you.
