New to the community but not new to heart problems - I've lived with rheumatic heart disease most of my life (diagnosed in 1963) but recently was diagnosed with angina and am booked in to a Rapid Access Chest Pain (RACP) appointment early next week as the GP thinks I may be in heart failure. I'm taking Bisoprolol 1.25mg+aspirin every morning and so far that is working very well for me - no side effects after a very mild headache the first week. I also have a NitroLingual pump spray I carry everywhere but haven't needed since starting the Bisoprolol.
My question is how do I keep from annoying the medical professionals I'll be coming into contact with now the heart problems have progressed to the point of, well, needing more contact with medical professionals? I've lived with rheumatic heart for so long I think I know everything and I know that can be off-putting to doctors and nurses. I also have a growing list of questions but don't know when to pull out the list and start firing off those questions - I also don't know who to ask those questions.
I want to be a good patient. I want to live as normal a life as I possibly can for as long as I possibly can and know I can't do that without medical professionals - how do I keep from being one of those annoying patients the experts dread seeing on the rota?
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Hello. Tell them what you’ve just told us (only shorter version). Don’t worry about being the perfect patient. I think that’s a very British thing. I didn’t want to be a bad patient and got left for hours. Polite questions and treating the medical staff/porters/cleaners etc with respect will get you the answers you need I’m sure.
Whenever I have been in hospital the nurses always say that I am the worst patient they have ever had!
I tend to get on better with the ancillary staff and other patients' visitors-and other patients
I don't think a list of questions is a terribly good idea
I tend to carry my blood donor's card with me in case they don't know my blood group (A Rh Pos) as I did my share of medical negligence cases and would put nothing past them
My feeling is they're the ones with the expertise born of training and experience...but I want to see those scans and have an explanation - something I know an NHS medic simply hasn't time for.
I'm on a (very small, sigh) private pension and my husband and I are thinking it would be best used to go private so I can reasonably expect my medical team to provide a bit more time to explain things with the scan on screen for visual reference.
This is all so new to me (being so unwell and needing a higher level of care) - as I said, I know NHS staff hasn't the time to put up with someone as 'needy' as I know myself to be and I don't want to the patient they dread having to deal with. Any and all advice from those 'been there-done that' folks is quite helpful!
I had a detailed discussion with my surgeon including options. Every question was answered. I think most are happy to answer questions if they are sensible. If you have read the relevant leaflets from BHF you have a good starting point. They might roll their eyes if you spout some Dr Google carp!
Thank-you for replying. Yes, I know about Dr Google I am ploughing through quite a stack of BHF publications, several of my questions come from reading, actually. I plan to take my list to the RACP appointment but also plan to keep it in my handbag until (if) someone says 'Any questions?'. I'm assuming a consultant will be assigned and he/she is the right person to address that list with but I also know time is limited with any of the medical professionals so 'been there-done that' advice is very helpful, thank-you again.
Be tactful about letting the medics know you know more than them.
Do not tell them that NHS training is all orchestrated by "Big Pharma".
Ask a carido nurse... they know more about cardio that the GP - and they are more likely to spare the time to tell you... and might even take the time to find out anything they do not know.
Hope to get an appointment when it is not good golfing weather!
The NHS is a wonderful organisation - and they have given me many thousands of pounds worth of free treatment.
Of all the helpful replies I've got so far, yours has to be the most helpful yet - I feel a 'forehead smack' coming on I genuinely wouldn't dream of denigrating their training or 'Big Pharma' but suggesting I ask a cardio nurse is brilliant, thank-you so much!
I am laughing to myself at your question, as that is me!!! Im a retired nurse( the most annoying) and my hubby thinks I am annoying to my docs. I write my questions down. I apologize ahead of time and tell them part of my obcession is anxiety, most of it is I know “ too much” and you as a doc must prove to me what you are saying is true. So far I havent been “ fired” by any docs, Im polite, they answer my questions.
My late husband was a British trained but US based surgeon (we raised two children there then I was widowed over ten years before remarrying and returning to Britain in late 2010) and I think he likely was the all-time worst patient on the planet owing to his training He did say he appreciated patients who bothered to learn all they could about their conditions and were cooperative with their medical teams but he really did not appreciate the ones he found 'know-it-all-better-than' types. I really want to avoid being one of those 'know-it-all-types' but I also want to have answers to these questions, and will definitely take your advice re advance apologising and asking questions politely. Thank-you for your reply!
Ive found with a fib that there are too many gray areas, science hasnt found the answers, which makes it harder for docs. Ive sought second opinions in many of my quests, only to find I end up back with my original cardiologist. He and I agree to disagree on certain subjects but he lets me have what I want. One subject he isnt a fan of is pill in pocket. He thinks I should take flecainide daily, I insist on only taking as needed. So far, it has worked for me but day may come I will need to change my opinion, lol.
When I am being less diplomatic ... sometimes I think that the good doctors are the ones that admit that they do not know all the answers.
Machines are made by people - so engineers have a better chance of understanding machines than medics have of understanding people!
It's quite unusual to have anyone, who has an established "rheumatic heart condition" on this hub. So, thank you for sharing.
My guess is that you would know far more about "rheumatic heart diseases" than any average Cardiologists. There are Cardiologiests, who understand Rheumatic Heart diseases, but these special Cardiologists seem to be extremely rare as far as I am aware.
RHD (or RHS) isn't diagnosed much these days as rheumatic fever nowadays is usually 'caught' before it even develops from a strep throat or the even less common scarlet fever case. But back when I was a 7yo child it was common where I was living (American Desert SouthWest - my Scottish and Welsh expat parents owned a cattle ranch there) - and my strep throat was so mild no-one noticed I was unwell until it developed into rheumatic fever. If I'm honest, though, having the condition didn't really 'slow me down' until my late 50s, and the 'slow down' crept up on me owing to my letting lifelong habits slide. I had a real scare the past month and am paying quite a lot more attention now!
When I have any medical appointment I write a list of any questions I have on a piece of paper or on my phone. Writing a list gives me an opportunity to think about the appointment and prepare myself. Indeed my next appointment is not for a couple of months but I already have two questions written down.
When I was in hospital (9weeks) I kept a pad and pen beside to write down questions. I have never had any doctor or nurse of any level take offence or refuse to answer any questions, nor should they.
As to when to ask questions, I put my list on the desk when I go in so it's ready. I find it best to keep my questions to near the end of the consult as they are often answered during the meeting. You have every right to ask questions and should not be palmed off.
It is also worth if possible taking someone with you to act as a second pair of ears, research has proved that most people only in less than half of all information given in a stressful clinical situation.
Hope all goes well and your questions are replied.
Thank-you for the reply, the excellent advice, and the reassurance Too right about questions often being answered in the consultant's discussion - I think I'll be taking notes and hopefully ticking off some of my list before needing to ask, with real luck all my questions will be answered without having to resort to the list. Also, my husband hopes to go in with me so he can be that second pair of ears. Thank-you again.
I always take my list of points I wish to cover before a consultation with my Cardiologist.
I live with an unusual condition and I help my Cardiologist by sending any new research articles to him before my appointment. This he really appreciates as it saves him time. He always reads what I send him.
We work in a partnership he respects my expertise by experience and I respect his knowledge regarding possible medication and treatment.
We wrote my admission plan together and the discussion at my next visit will be the revision of my plan and recent hospital admission.
I had to laugh at my last visit he kept wanting to look at my list and wanted to keep it to put into my notes.
That's a great way to make sure nothing important slips your mind, I think I'm going to do something similar for the Rapid Access Chest Pain (RACP) appointment.
When I came home from the US to Britain and registered with the GP I did hand the UK GP surgery nurse as accurate a list of meds and diagnosed conditions. She weren't interested, sadly, and I'm pretty sure she binned my list. Over the next 8 years I'd try to get my heart conditions addressed but they still didn't seem interested and I knew things were not going well but got the impression (very strong) they found me a 'problem patient'. So I gave up, really and had been 'winging it' on my own, which clearly wasn't working.
Last September (2018) my husband and I downsized to a one-level bungalow six miles away in a different town. To be honest, I didn't bother to register with the new GP until I had a disturbing incident in the dentist chair 22 April 2019, and he stopped the procedure insisting I go straight to the GP, register to be seen that day - or go to A&E, my pick.
Surprisingly I was in the new GP exam room very quickly. I'd done another print of my list I was keeping in my handbag (in case I collapsed in the street and some first responder bothered to have a look) and I thought, 'Oh why not' and handed her the list - I feel her willingness to actually read the list and add it to my record made for a quicker response. She took me seriously, I was examined and very quickly had the prescriptions, same day bloods and an ecg done and a RACP appointment made before I even left the surgery. The next day I had another exam with her and she told me apparently the old GP surgery never sent for my US records, and there was nothing noted regarding my RHS. She said 'We're going to start from scratch using your list as a reference point.' Confidence builder, that.
I'm thinking once the RACP results are done and a definite diagnosis made, I'm going to join MedicAlert so I all I have to do is wear the bracelet and be sure the wallet card is in my purse.
My admission plan was written individually for me to meet my specific needs when I am admitted.
My Cardiologist and I wrote it together.
I gave him an outline of the care I needed.
He did all the medical side re medication etc.
We had input from the Pain Team and 2 Professors of Cardiology who are world experts in my condition too.
It came about because I kept being left in severe pain due to the same repeated mistakes were being made by the medical staff. This has left me quite naturally with fear of going into hospital.
The NHS Constitution supports our right as a patient to be involved in the planning of our treatment including care plans.
I have no trouble at all understanding your hospital aversion brought on by mistakes - that same feeling made me unwilling to trust the first GP surgery I registered with on my permanent return to the UK after they 'didn't want to hear it' but also didn't want to find out if maybe possibly I was telling them the truth about my health.
I feel much more confident in my new GP surgery but the earlier experience is why I want as many sources of official, accessible information available as possible. I will make sure to (politely) get the same sort of information you have out to where any medical professional can get to it quickly - as I wrote in my opening post, I want to live as fully as possible as long as possible, and I know I can't do that without a good working relationship with primary and secondary medical care providers.
This is a very interesting topic and is so relevant now, given the pandemic and the workload of medical staff. And it's amazing how many people have joined the ranks of volunteers to help doctors treat people from this virus. That's why I want to be one of them, even though I don't have a medical degree. I learned that there is a home health aide, I found some info about it on exploremedicalcareers.com/h... . If you know anything about this, please share your experience and thoughts.
I also take a list with me - ever since I realised I had forgotten to ask something, and had to wait six months for another chance. It’s also a great way to prioritise what is important to you, and what you need to know for peace of mind. You won’t be asking them anything they haven’t been asked before.
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