Our ‘Topic of the Month’ in November is, ‘Getting the Most from Medical Appointments'
One of the most important ways you can stay healthy is to be an active member of your own health care team. 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.
We would really love to hear your tips and experiences about getting the most out of medical appointments. We'd like to present advice for people trying to get a diagnosis as well as those who have an existing relationship with their doctor. If you have had any particularly good experiences and can identify any factors that helped, please let us know.
Let us know all of your tips and experiences and we’ll compile them at the end of the month for an article. Please share in the comments section below, or email paul@lupusuk.org.uk
The article itself will be posted on the LUPUS UK Blog at lupusuk.org.uk/category/blog/
All submissions will be anonymised.
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Paul_Howard
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Well for myself, I've learned that the success or otherwise of consultations usually depends on being really well prepared in every possible way.
This preparation, in my case, involves taking a printed list with new and longstanding symptoms laid out clearly in bullet points on one A4 sheet so that the consultant can read and pick out the key points at a glance. This is especially important for a first consultation I feel. Best not to hand them the sheet straight away - just refer to it yourself until they ask to look. Otherwise just pass it over to them at the end of the consultation. This way they may well pick up on important symptoms when writing their clinical letters afterwards - many doctors find it useful.
Also having 3 or 4 key questions to hand is helpful and the more you have considered and rehearsed these questions, the more likely you are to remember to ask them, even under the inevitable time constraints and unexpected emotions or diversions that often arise during an appointment.
I have found that it's important to be friendly and keep some humour in reserve, so I don't appear overly intense and anxious. Most doctors are just human after all and it's important to locate and appeal to the human in them where possible! Try to maintain good eye contact and stay firm in the face of any attempts to belittle or diminish your symptoms and signs.
Equally it's really good if I can manage not to ramble, become defensive/ prickly or undermine myself by falling back on small talk or self deprecating humour - as I'm prone to! Be friendly and polite of course - but not too friendly or desperate to please/ impress. Time is always of the essence so rambling or repeating oneself isn't good - but I still often do it!
I have taken my phone in my bag set to record - to almost all of my rheumatology and neurology appointments over the past five years and played them back to myself afterwards to digest or remember what was said, and so I can learn how to convey things better next time. Personally I don't ask if this is okay because I believe it's my right, since the consultation is about me. But I've only ever played these recordings back to myself and my husband on the occasions when he wasn't there with me (usually I go alone as this seems to suit me better).
Some people find it better to take a partner or friend. I don't find this better always - and it can alter the dynamic of a doctor patient relationship in a negative way so I have found. Some doctors become defensive or even show off if my husband is there. This depends entirely on the individual though. If you are shy or timid natured then it can be useful having a person to support what you are feeling but maybe unable to express.
All the same things apply to GP consultations, but obviously shorter lists and fewer, more succinct/ focussed questions are required!
Finally, if you're anything like me, it is important to emphasise as honestly as you can, how much pain or fatigue are affecting/ impacting on your daily life and work. I tend to forget to do this because I find it awkward or embarrassing - but when I've done it the doctor has usually opened their eyes wider and thought harder about me from this moment on.
This is excellent Twitchytoes especially as I've got my second opinion appointment next month and I'm feeling anxious, I've been waiting six months for it and I've been rehearsing in my head what I need to say , having had a really bad experience this year with a rheumatologist I need to be calm, I have everything written down. I know everyone says to take someone in with you but I often feel if I go in alone I am more focused and not distracted so it's nice to see that I'm not alone in preferring to go alone ! Recording is a good idea but do you ask them first if they mind or do you do it 'undercover'?
Diane I do it undercover so they don't get the opportunity to say no or make me feel stupid!
Example: A month ago I went to neurology appointment having previously gone with hubby and come out feeling miserable and shafted. This time I went in alone, super well prepared and I recorded the appointment - switched on "record" while in waiting area as I could see when she came out and turned it on five minutes after the person before me went in.
It all went really well this time, but then I have had a irrefutable diagnosis by time of second appointment so head held higher and wasn't going to be told I looked too well to have a CTD or that I was over thinking this time! She talks very fast with a German accent and leaves very little room for the patient to speak - it's all "yes no - this is what I think (lecture) and see you in six months" with this consultant - with her piercing pale grey eyes!
So the recording I made is invaluable to me as I have understood the gist better and also realise now that she made some very valid points about possible toxicity of future drugs. I wrote a letter to her afterwards, clarifying a few points and making my own position clear. She's not a rheumy so there are large gaps in her knowledge about Sjogrens and she describes anti rheumatic drugs as "very sinister and even life threatening". As I wrote in my letter to her afterwards, I find the drugs she is wanting me to try, equally sinister. And unlike immunosuppressants they are handed out like sweeties and not well monitored at all. I am in a very good position to say this having had serious allergic reactions to bothe families - symptomatuc treatments and DMARDs!
Best of luck with this appointment - I'm sure it will go better. It was my old GP who tipped me off that sometimes bringing partners or friends along can alter the dynamic for the worse. X
That's interesting , thanks yes fingers crossed I'll get somewhere this time and hopefully this consultant will actually know what he's talking about and not just fob me off! My GP is very supportive and she's hoping I'll get a definite and correct diagnosis now.
You mentioning about drug reactions, although I haven't had nasty reactions I do have a lot of trouble tolerating drugs, I've just had to stop Hydroxy after trying really hard to slowly build it up since May but it was making me feel dreadful and sedated on top of already feeling dreadful! It doesn't bode well if I need anything stronger!
Thanks for your input it's been really helpful and encouraging for me.
From your last paragraph, since I moved to a new practice, I am finding the doctors are really doing their best to help me, but with so many allergies to foods and drugs, I realise it is difficult for them.
I can vote for the A4 bullet point list - I was recommended to do this by my endocrinologist when he was helping me try and get to the bottom of what was going on with my body. Before that various consultants would ask me about symptoms and I'd start explaining the long list of non specific and intermittent problems and would see them glaze over and not really listen. Handing them a list seemed to get their attention much more and it meant I could update it to keep track of how my body was reacting as you often don't notice changes that happen slowly over time, both good and bad. The only thing I did find was that the rheumy thought I'd gone on a lupus page and copied their list as it made it so clear what the problem was ... I'm not sure he believed me when I said I'd never heard of lupus as I actually thought I had either RA or MS!
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