#1 'How to close patient-doctor disconnects.'
Building our language/questions to feel like we've done our best to advocate for ourselves AND improve our chances of being heard in a medical consultation.
Hello, Dear Reader! Welcome to our new Carer Mentor community members!’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?
In short, after a career climbing the corporate ladder and 18 relocations across 10 countries, I made a head-heart-gut-aligned decision to help my Mum care for my Dad. He had a litany of health issues that were destabilised by a major hospitalisation in 2015: congestive heart failure and rheumatoid arthritis were compounded with a diagnosis of vascular dementia and then bladder cancer.
Dad passed in January 2020. Shortly after his funeral, we moved to another rollercoaster— treatment for Mum’s cancer.
What do you say when you’re consulting with a doctor or nurse?
How can we advocate for ourselves, identify actionable phrases to use with medical staff and close potential patient-physician disconnects?
Can we help each other articulate needs and concerns?
The Initial Consultation and why there’s a patient-physician disconnect.
Today, there’s a greater onus on us (patient/caregiver) to close the disconnect and assert our needs.
In the UK, our parents’ generation experienced a health service where a GP could build a long-term care partnership with each family. Now, consultations are shorter and can feel like a ‘find-and-fix’ single process, with less continuity over time.
Triage is by electronic form filters or appointment staff. Sometimes this works well, sometimes not. (If you have escalating or acute symptoms, it’s always best to call emergency services)
In today’s context, we can feel pressured to research and learn more to ask the ‘right questions,’ and speak the ‘medical/health language’, but we’ve no medical degree. How can we ask or describe our needs if we don’t know what we don’t know?
While some may call this patient empowerment, it can also mean entering a health discussion uninformed, unaware, and without an established bond of trust.
This puts us at a disadvantage and defaults to a parent-child-like power dynamic, where we play catch-up—a Patient-Physician Disconnect.
A consultation can feel like a timed test. We have to summarise and communicate the essentials efficiently, laying out facts for the expert to review.1 Do you ever feel like it’s a negotiation, or you start second-guessing your symptoms or why you came in the first place?
I was going to write about communication in general, but a Times Newspaper article by Katie Strick (published Sunday, March 9) shares some solid guidance about how to prepare and engage with doctors to reduce this disconnect and support better outcomes.
She mentions two information sources for optimising medical communications that I haven’t explored:
TikTok and social media, where several doctors share questions and ideas to support us in consultations—I was sceptical initially, but then I read the examples below.
Using ChatGPT to optimise questions, make them more specific or provide alternative phrases.
How to prepare/engage with doctors to improve consultations
The Times Newspaper article: How to get your GP to listen to you. After her doctor brushed off her symptoms, Katie Strick turned to an unlikely source for advice
[This contains direct quotes from Katie Strick's article]
A few weeks later, on a trudge around Battersea Park with my friend Annie, a doctor, I told her how defeated I felt trying to explain how the pain was affecting me. “Have you tried TikTok?” she asked, pulling up a video from a London doctor, Matt Barrett, outlining the key questions medics often ask to help them quickly assess and evaluate a patient’s pain2.
I watched the clip, sceptical. I am well aware of the dangers of trusting health advice from TikTok. But Barrett wasn’t peddling snake oil: he was using TikTok to attempt to close a communication gap between doctors and those patients — like me — who were leaving appointments feeling like they hadn’t been listened to.
The TikTok video transcript by Dr Karanr that Katie Strick highlights in her article “From 'it's just anxiety' to how you can advocate for yourself”:
Ask the right questions because you deserve a proper work up. For example:
'What tests have been done to rule out other causes' - this puts the responsibility back onto the doctor to explain their diagnostic process.
"Can you explain why you're confident this is anxiety and not a physiological condition" - if the answer is blood work, fine
“Have we ruled out conditions that mimic anxiety?” - Many conditions can cause symptoms that mimic anxiety. For example, Hyperthyroidism dysautonomia mast cell activation syndrome (MCAS).
“What is the treatment plan beyond treating anxiety?” - If the answer is just therapy and SSRIs, ask 'What else can be explored?'
Be specific about your symptoms
Instead of saying, 'I get dizzy a lot', say, 'I get dizzy when I stand up, especially in the morning, worse after eating or after I've been sitting for a long period of time. This could suggest something like POTS3 instead of generalised anxiety.
The more specific and data-driven you are, the harder it is for a doctor to wave it away as generalised stress.
Keep a symptom diary because data talks. Track your symptoms and what you eat daily, and bring this log to your doctor.
What you ate
timing
exacerbating factors
relieving factors
severity
Note patterns: does it correlate with standing, eating, and sleep? Hormonal changes
Do you have a family history of heart disease, diabetes, cancer
Hard data makes it harder for them to dismiss you. There's a huge difference between saying your condition is causing anxiety and saying your symptoms are just anxiety. The first acknowledges your experience. The second erases it.
Dr Noa Sterling (she founded Sterling Parents and here is her TikTok channel), a US obstetrician-gynaecologist with 218,000 TikTok followers, recently went viral thanks to her advice for pregnant women on what to say if they are told their symptoms are normal.
“This is what you say: ‘I know that normal pregnancy symptoms can sometimes be an indication that something more serious is going on. What about my situation tells you this is not something serious and not something that I need to be concerned about?
The videos also taught me that my number one rule as a journalist — not to be afraid to ask stupid questions — applied in the consultation room too. I’d often been nervous to ask doctors to explain terminology for fear of embarrassment, but it’s OK to ask a GP for a more simple explanation.
The BBC broadcaster Emma Barnett has become a champion for better gynaecological health treatment since her diagnosis of endometriosis aged 31.
“That’s terrible — have you ever had a gynae scan?” the endocrinologist asked as I described the knifelike pelvic pain and the way it often feels as though my insides are falling out of me — descriptions I’d brainstormed with ChatGPT on the advice of my friend Annie. I had asked it how I could be as clear as possible about the pain.
I used numbers too, another lesson from TikTok. My periods often lasted seven days, I told her, plus another five days of discomfort and crushing fatigue. Give or take, these so-called “women’s problems” had had me underperforming at work, struggling to exercise and dragging myself through social occasions more than 40 per cent of the time.
In many ways my appointment was nothing remarkable. I asked questions about my symptoms and possible follow-ups; my doctor booked me in for scans. Yet it felt groundbreaking. For the first time in my life I’d pushed for a second opinion and gone in armed with details.
I can now apply the lessons I learnt whenever I talk to a GP: keep detailed notes; be as specific as possible with symptoms and questions; never be afraid to seek a second opinion. Is every appointment perfect? Of course not. Do I walk out feeling I’ve advocated for myself? Finally, yes. And funnily enough, I tend to walk out feeling like I’ve been listened to.
TikTok tips on making yourself heard by the GP
Find the right doctor
Look up their specialisms before booking and ask for a double appointment if you have multiple issues to discuss. (Note from Victoria - GPs can have specific additional specialities e.g. ear nose throat (ENT), cancer. )
Treat appointments like meetings.
Bring a timeline of your symptoms. Set out your priorities in an opening statement (use phrases such as “my biggest concern is”). Prepare a list of questions. Summarise next steps before you leave. Take notes or record (though always ask your doctor’s permission first).
Don’t be confrontational.
Try not to be affected by the memory of previous frustrating medical encounters — it will just make your doctor defensive.
Note from Victoria - Ask open questions to invite their ‘expert’ opinion but clearly ‘bottom-line’ their point, or clarify the ‘so what’ / ‘so for us that means.’
Be specific
Incorporate context to your symptoms (what was going on when you noticed the problem? What time of day does it begin?). Describe it evocatively (is a pain sharp or dull?). Give examples of how it affects daily life.
Note from Victoria
use adjectives, e.g. sharp, throb, ache, intensifying, crescendo
describe duration and frequency with a timeframe, e.g. how often per minute/day/week
concerning time of day and positions, e.g. when I get up in the morning, lie down, stand up.
Consider amplitude/intensity or impact and use analogies, e.g. the dull ache is constant. Recently, I’ve had a sharp pain in the morning when..
Try to identify the specific location or shifting locations in the body
use comparisons, patterns, correlations, stimulated by, intensified by, avoided by, relieved/dissipates when
Think about your five senses inputs impact: see, touch, hear, taste, smell e.g. colour of pee, smell of pee, pallor of skin, crepe-paper skin, yellow eyes, dry mouth, etc.
These are useful as prompts at home to monitor daily symptoms.
Ask the right questions.
It’s OK to ask your GP to repeat or rephrase. Cover questions such as: ”What might have caused the problem?”; “Can you explain why you think this is normal for me?”; “What future symptoms might suggest I need emergency care or a follow-up?”
Know your rights
Don’t hesitate to seek a second opinion or bring someone to appointments. Having a companion there to take notes and reaffirm your symptoms can be game-changing.
P.S. Think friendly, firm, direct and rephrase to recheck.
Always summarise agreed actions ‘The Echo back-contract’: who is doing what, by when, and what to do if you don’t hear anything by a specific date.
Check if a standard diagnosis protocol is being followed (so you can google it afterwards) - these are standards for cancer diagnoses/treatment. ‘Could you let me know if there’s a standard diagnosis/treatment protocol we’re following for this?’
Next steps. Recap your understanding. ‘Just so I’m clear…
The next step is a referral, test, or scan. Within what timeframe, in what place, and by what department? Should I call here/there if I don’t hear anything in the next few days? (Names and telephone numbers are essential.)
Usually, the results will be relayed to me by whom and when. When can I expect to hear about the results, and how—via a call from yourself or someone else? (Think: who, what, when, where, why, how.)
What’s worked for you? What would you add?
Thinking about a recent consultation with a doctor/nurse - how did you prepare for it, what information did you share, and what questions did you ask?
Can we help each other articulate needs and concerns?
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Caregivers can feel the added stress of simultaneously being the interface and the universal translator for both the medic and the loved one!
“key questions medics often ask to help them quickly assess and evaluate a patient’s pain” It’s worth remembering that doctors are trained to triage, listen-out for red flag symptoms and words, and to do this quickly. Pro Tip: start talking a little slower, and more deliberately with content rich messages. Take a little control back in terms of the pace of the consultation.
This is a great resource, Victoria! People need to know how to advocate for themselves.