I’m often asked how I’ve managed to get the most out of healthcare appointments, there is no quick answer so I’ve decided to write a longer one. As always, this post is written from the dual perspective of expert patient and healthcare professional. Much of this post is written from my own personal experience.
During my Occupational Therapy training we often talk about ‘Therapeutic Relationships’ this is basically a fancy way of explaining the interactions between patient and healthcare provider. A good therapeutic relationship is a partnership between patient and healthcare provider, there is trust and honesty from both sides and everyone communicates perfectly. In reality this doesn’t always happen.
Since I have fairly complex health issues I have been ‘lucky’ enough to interact with a fair few healthcare providers so I’ve learnt a thing or two about what it feels like to be a patient, I’ve also done two practice placements where I learnt what it was like to be an OT. Using these experiences I’m going to attempt to give you all a few tips for building positive therapeutic relationships. I have no intention of causing offense or upsetting anyone but I might have to be a little blunt in the post just to get the point across.
First off I’d like you all to remember that you don’t know everything. This is true whether you’re a patient, healthcare professional or both! Acting like you know everything is a surefire way to put the other person on the defensive.
As an expert patient with a number of rare conditions I have often walked into an appointment being fairly sure I knew more about my conditions than the ‘expert’ I was due to see. On a number of those occasions I’ve been proven right! Even if this is the case it’s worth remembering that the ‘expert’ you are due to see has a LOT of years of training and experience. Even if they don’t know the specifics of your condition they will have some transferable skills. For example, they haven’t heard of my condition but pain is a symptom and they are a pain specialist so they can still help me. Make sense?
If you are walking into an appointment and you’re a medical zebra then make sure you give the healthcare person a chance to give you their opinion, to explain what they do know and to ask you questions in their own time. You may well have to explain your entire medical history in detail but if you jump the gun and start lecturing then you’re kind of assuming the worst about the person who’s there to help.
Try to remember there are a massive number of infinitely complex medical conditions out there, it’s impossible to be an expert in all of them!
If you are a little medically complex (like myself) you might well find you have to be your own expert. When I first got my diagnosis I spent hours online learning everything I could and trawling through forums. I would actively encourage everyone to be an expert in their own health conditions but please be careful about where you get your information from. Doctors often warn about the dangers of the internet diagnosis, you google symptoms of a common cold and a dodgy website informs you that it’s probably leukaemia or the plague. If you do decide to go the internet route then try to stick with websites that have the NHS Information Standard or a similar accreditation, scientific or medical journals are also a safe bet.
Now if you do turn up to an appointment with print outs (from reliable sources) that explain your symptoms, don’t simply thrust them under your GP’s nose and expect them to read the lot in front of you, time is short and this isn’t the best use of your appointment time. Keep the print outs in your bag, if your GP is stumped and doesn’t know where to turn then suggest your google theory and ask them what they think. If they are receptive to the idea then you can offer them the print outs for reference later on. If your GP suggests something else, that’s equally likely then don’t dismiss their suggestion. Part of building a good therapeutic relationship is negotiation, agree to try it their way for a few weeks or pursue both diagnoses until one is proven. Often with medical situations it’s worth ruling out the obvious causes because they are easiest to test for! Just because you have a rare medical condition doesn’t mean you can’t also have something totally mundane like an ear infection or the sniffles.
This next scenario is one I experienced myself, it involves communication and it is an important lesson for both patient and healthcare provider alike.
In an appointment with a new GP I was asking to reduce one of my pain medications with the intention of coming off it all together. The new GP listened to my reasons then pulled up my records and said “Well! you are on a lot of medications aren’t you”. I sort of froze on the spot here and instantly felt pretty defensive, one of the most common fears of chronic pain patients is being labelled a drug seeker. I know there are legitimate drug seekers out there but the vast majority of us don’t want to take any more pills than we absolutely have to!
My GP could have meant absolutely nothing by that comment but for the rest of the appointment I felt like I needed to justify the meds I was taking. I was defensive and so he became defensive too. It was a pretty rubbish appointment. I left in tears feeling totally useless. I know I might have over-reacted but I’m the patient, I’m scared and in pain so I’m allowed to over-react! It’s the professionals job to be calm and level-headed.
Healthcare professionals, it is important to think about how your comments sound from the other side of the table. There are lots of issues with communication including medical words like ‘benign’.
To you (the healthcare professional) ‘benign’ means that my condition is not going to change my life expectancy. It won’t kill me. Patients often don’t see it the same way, I’ve spoken to sobbing patients who feel like by labelling their condition ‘benign’ you’ve minimised the impact on their lives, it sounds like you’re not all that worried about it. Think about ‘benign’ joint hypermobility, the condition doesn’t affect life expectancy but it can be severely disabling and living in pain has a massive negative impact on quality of life, not all that ‘benign’ is it really?
Healthcare providers, if your patient arrives with notes on paper looking a little flustered and struggles their way through an explanation, please be patient. You might have seen 20 patients today with the same thing or even something worse but for that patient, right then, they should be the most important person in the room. We (the patients) know you work hard but it doesn’t make our illness any less scary or painful or anything else.
My final tips are for patients to make to make the most of appointments:
- Make a list – jot down anything you’d like to talk about, you can start the list weeks in advance and add to it as you think of things.
- Take someone with you – not only for support and cuddles but also because two minds are better than one and your ‘someone’ can help you remember important info.
- Get contact details – especially if this is an important, out-of-town appointment. Make sure you get an e-mail address or phone number incase you forget something.
- Allow plenty of time for travel, you don’t want to arrive flustered and unprepared.
- Be patient – let your Doctor finish typing or writing before overloading them with the next piece of info.
- Be clear and try to be calm. Explain what’s wrong in the simplest way possible and use language that’s comfortable to you. If you know your anatomy in latin then great, go for it. If you need to point at the bit that hurts then that’s just fine too!
- If you’re asked to do something that could hurt or upset you then don’t be afraid to say NO but do explain why or your poor medical professional will be baffled.
- Ask questions, there are no stupid questions only stupid answers. You’re not expected to know anything about medicine but if you don’t ask then medical professionals might assume you know more than you actually do!
- You are entitled to a second opinion. If you’re not sure about what you’ve heard then feel free to ask for someone elses opinion.
For both patients and professionals my final piece of advice is to remember you are dealing with a human being. Even Rheumatology Professors and neurosurgeons have bad days.
I do hope you’ve found this helpful and I’d love to hear your thoughts, questions or comments!