We are all looking for advice and guidance when navigating our health journey.
During your health journey, have you been asked any questions or given any guidance (within healthcare services or outside) that you have found particularly helpful or unhelpful?
Thank you in advance for sharing your experiences 😀
Anna
Hi
Yes.
After my stroke the Dr an Endocrinologist wished to put me on Metroprolol. I said NO THANX. She gave them to me anyway.
NZ or Northland DHB gives Metroprolol to all stroke victims.
I had breathlessness, fatigue and 24 monitor showed 2 x pauses of 2 secs during night.
I was finally changed to Bisoprolol 2 years 3 months later! By Heart Specialist DHB.
Still not CONTROLLED AF with rapid persistent H.R Day put on CCB Diltiazem by PRIV Heart SPECIALIST.
Controlled on 120mg AM Diltiazem and 2.5 Bisoprolol PM.
Day 123/68-80. 62-88 H/R
Night always stays down at 47.
A CCB best ever drug for me.
Cheri JOY. 74. (NZ)
The most helpful advice was to be my own strong advocate for my health care. Learn as much as possible about my conditions and speak up when I have a concern or question or differing opinion. We know and care about our bodies more than anyone else. So we need to act like it!
Best advice is to be prepared when seeing the doctor. Before your appointment, write out questions you want to ask, make notes of any and all symptoms, no matter how small, and keep a journal of your diet and activities and how you have been feeling. Make sure the doctor is paying attention to you when speaking with them, not making notes in the computer. Ask for labs, and then ask for explanations of the labs every time you go. The more prepared you are, the better the appointment and the doctors appreciate it.
spot on good advice always be prepared 🇺🇦🔥👁️
Unhelpful advice - "you have to think positively." No, negative thoughts and feeling are there for a reason and should not be supressed or bottled up.
Unhelpful questions - endless assessments, not followed up by any actual help. There are too many people in the system who assess you then pass you on to someone else, who just does the same., until you're dizzy from going round and round in circles.
Another unhelpful question - "How are you?" when asked by people who just walk away if you actually tell them. I long ago gave up answering, most of the people who ask it just mean "Hello" so I just say "Hello" in reply. If they really care they'll ask again.
Unhelpful advice - "Don't look on the internet." Yes, there is a lot of rubbish online and lots of scaremongering stuff that's best ignored, but there is a lot of good information and advice out there. Being able to tell the difference is an important life skill. So is knowing how to search the internet effectively.
Useful advice to anyone bed-bound in hospital - "Never fall out with the people whose job it is to wipe you bum." I'll leave it at that.
And ditto re. asking questions, if you need a stay in hospital. Ask questions during ward specialist circuit. Drs and Nurses ae there for you and not for their own good. Good clinicians will give you the time to talk and respond. Make sure everything is clear. If something bothers or upsets you, speak to someone about it. They are all there to help You have a good experience and recovery. If it's embarassing dont worry they've heard it all before OR have to learn about it. Treat them respectfully however, and always give trainees opportunities to be engaged in your condition and treatment.
Everyone has to learn, and it's important for trainees to get as broad an experience as possible. BUT...
I used to always allow trainees to be involved, and I still would if it was a straightforward issue, but I was badly hurt by a lumbar puncture done by a doctor in training,, which made me now think twice. I now would refuse to have a trainee if I know that I really need expert help and I judge that an inexperienced person could actually harm me or distract the attention of the expert when I badly need them to be 100% focused on me, not on being a teacher., for example if I'm trying to get answers to something that two other doctors have already been baffled by.
You always have the right to say no, and sometimes you may just feel like one doctor is all you can cope with, you don't want two people touching you, asking intrusive questions, seeing you naked or whatever they are doing that is stressful. Sometimes I say No because I'm having a bad day and I just can't face being used as Exhibit A today.
Part of what trainees need to learn is to respect the rights and wishes of their patients - someone saying No to them sometimes is a lesson they need. The trainers sometimes need a reminder of the patients' rights too!
Take up Yoga and join a gym both of which cost money!! This was purely for back and neck pain and to avoid referring me for physio.
Def agree with comments here....it does NOT help when people say 'you're lucky to be alive' 'you must think positively ' ' just put it all behind you ' ...etc etc. 'Don't read the internet ' is another one ....ICU steps from the internet the only thing that is getting me through in absence of icu diary and any follow up . 5 months on I'm still very limited ...get breathless and worn out with the slightest thing ...so 'you look well' doesn't help at all . Neither does 'how ARE you ...you must be feeling better' ...actually no I'm not and I actually did tell someone where to go yesterday 😏 I was told by an ICU doctor that ICU in emergency VERY different from a planned admission ....and it's really really annoying when someone who had a heart by pass said he was in ICU after it and was 'fine'. His situation also helped by a very thorough weekly check up and follow ups ....cardiac and stroke and cancer patients get a lot of follow up ...my first appointment for ANY help is coming up ...it will be 6 months ...and this last 6 months has been a living hell .
I can tell you the most unhelpful "sometimes people just have joint pain and there is no reason for it"
Unhelpful is being offered medication after a rushed 5 min brief chat . Menopause .
Best - after gastric surgery being referred to the PARIS scheme which was a discounted membership to a gym with an on hand trainer to show you how to use all equipment safely following a tailored programme which was amended to suit . Little known about but via NHS .It transformed my life . No repeat meds in fact aged 63 with access to free prescriptions I take no meds for anything . I have good friends I met at the gym . I am maintaining a sizeable weight loss 5 years on .
💬 Discussion Topic: How does your health condition impact your mental health?💬 Discussion Topic: Are your mental health needs being met by your clinician or healthcare provider?💬 Discussion Topic: What could improve your trust in healthcare providers? 💬 Discussion Topic: what is important to you?💬 Discussion Topic: What are the most critical aspects of patient experience that should be considered in healthcare research?
