A painful topic: what doctors need to know (according to patients)

What doctors need to know (according to patients)

Ok, so I was wrong. I really liked the RACGP good GP television commercial. It had some flaws but I thought they were small in the grand scheme of things (see my last post). But many patient advocates did not agree and were unhappy about the lack of communication portrayed in the video.

Blogger Michelle Roger commented: “My current GP asks me what I want to do, what I think is most important and together we sort through the problem at hand and potential solutions. I feel valued and heard and trust her more knowing that she listens and knows me and my family.”

“That for me was missing in the video. It was one-sided and the patients appeared little more than props to be talked at. In fact the patients had no voice at all. A problem that still permeates a lot of medicine.”

Crockey health blog posted an article titled ‘The Good GP never stops learning: the RACGP video that made doctors cry – and patient advocates wince’. In a response to this article Irish blogger Marie Ennis-O’connor wrote on her blog: “We can’t just talk about a commitment to patient centred care – we have to live it. It is only by bridging the divide which places patient and doctor expertise on opposite sides that we can achieve more personalized and meaningful care of the patient.”

Patient blogs

I wondered why the patient opinion was so different to mine. On Twitter it was suggested to me that more doctors should read patient blogs to understand their view better. I thought that was a good idea so I asked for some recommendations and started reading.

I can tell you, it didn’t cheer me up but it was enlightening. It felt a bit like a refresher course “do’s and dont’s for doctors”. What I read was that, in the eyes of patients:

  • Doctors often don’t know how to deal with disabilities
  • Doctors sometimes blame patients for treatment failures
  • Some doctors find it hard to accept patients as experts
  • Doctors don’t always communicate well.

Now that I’ve read the blog posts I feel that I can better appreciate the patient response to the RACGP video – and I learnt a lot more along the way.

I have been given permission to share parts of these blogs and I recommend anyone who works in healthcare to read on. It may help to bridge the divide. Doctors beware: don’t expect flattery.

Empathy towards disability

Carly Findly

Carly Findlay: “Doctors need to move past the textbook and immerse themselves in the disability community to truly learn and empathise with our experiences.” Source: Carly Findly

In one of her posts writer and speaker Carly Findlay tells the story of how doctors gave up on her and told her parents to prepare for her death, and how she later met one of these doctors.

(…) “Over the Christmas holidays, I introduced myself as an adult to the dermatologist who gave me a pretty dismal prognosis as a baby. He pretended not to remember me until he told me I always had blocked ears. I think he was surprised to see me. I told him some of my achievements including how I am now educating dermatologists about my condition (something he needed when he treated me).”

(…) “Other people with Ichthyosis tell me that doctors didn’t give them a chance either. My friends have said that their parents were told they wouldn’t make it into mainstream school, that they wouldn’t have relationships or children, and that they would be social outcasts.”

(…) “The political models of disability can determine a person’s compassion and empathy towards disability. And so a doctor’s low expectations for a baby born with a disability can set the scene for their attitude through the lifespan of that patient.” (…) Doctors need to move past the textbook and immerse themselves in the disability community to truly learn and empathise with our experiences.”

Read the complete post here. Follow Carly on Twitter

Blaming patients

Caf

Caf: “I’m not sure that I truly trust any doctors, despite having a lovely GP.” Source: Rellacafa

Blogger Caf explains how doctors told her to see a psychiatrist when their attempts to treat her chronic pain failed.

“I had arrived at the appointment of the reveal, hobbling with a pair of forearm crutches. I could hardly bear any weight on the offending ankle. It didn’t take long for him to deliver his message, laced with condescension and arrogance. ‘There’s nothing wrong with your ankle. Why are you on crutches?’”

(…) “Chronic pain has been misunderstood and stigmatised for so long that many people probably don’t know what to believe. Even patients themselves often wonder if they’ve just gone crazy because their symptoms are so utterly illogical.”

Caf says that her experiences have affected her trust: “I’m not sure that I truly trust any doctors, despite having a lovely GP.”

Read the complete post here. Follow Caf on Twitter

Michelle also writes about pain in this post: “And there is a pervasive idea of the drug-seeker, seen in every patient who has chronic pain. That those who simply don’t get over pain and require ongoing pharmaceutical management are weak.”

“Friends who have used pain clinics tell stories of dismissal and blame. That they are not trying hard enough when they don’t recover, when I know the lengths they have gone to to try and alleviate their pain. And compassionate pain doctors who become the exception not the rule.”

The patient as expert

In another post she writes: “As a patient with an unusual, complex, and poorly understood disorder, 9 times out of 10 when I see a new doctor I am the expert in the room.”

(…) “I spend my spare time researching my disorders on Medline. I flip through Cochrane Reviews, and review consensus statements regularly. I read up on the drugs I’m taking and keep abreast of current research trials. On forums, I can ask questions of other patients.

“The constant fight to be heard is exhausting

Arm rash Michelle Rogers

Michelle Rogers: “I awoke to welts and rashes across my body. My pre-op information met with eye rolls, a sense that I was over-anxious, and thus completely ignored.” Source: Living with Bob (dysautonomia)

(…) “Some doctors are quite happy to acknowledge that I may know more about my disorder than they do. For example, my GP is happy for me to take the lead on my treatment needs. Even my cardiologist is happy to discuss my disorder in more of a collegiate manner, than the traditional doctor-patient relationship.”

(…) “Yet there are many others who are nothing short of dismissive. Should I dare to suggest a potential treatment or line of investigation the appointment can become adversarial. At times what I say is outright ignored.”

“Case in point my recent hospital admission. Despite having a red allergy band on my arm, sharing the information from my Allergist, and speaking to both my neurosurgeon, anaesthetist and senior nurse about my allergy to adhesives, I awoke to welts and rashes across my body. My pre-op information met with eye rolls, a sense that I was over-anxious, and thus completely ignored.”

(…) “The constant fight to be heard is exhausting. We are told that we must be our own advocates. That the future is patient-centred medicine. That rapport and making a patient feel part of the decision-making model leads to more compliance and more successful outcomes.”

New technology

Michelle: “Patients no longer live in a bubble where they are reliant upon their doctors as the only source of information. With the advent of social media and the ease of access to medical journals, patients can be as up to date, and at times, in front of their doctors, with regard to advances within their various disorders. We come empowered and informed to our appointments and have an expectation that our doctors will be equally informed or at the least, willing to listen and work with us.”

“We have an expectation that our doctors will be equally informed or at the least, willing to listen and work with us

“The medical community needs to be aware of the new ways information is being shared, especially the speed at which information can now travel. Instead of criticising patients for researching their ailments, they should instead be working with them, especially to direct them to more appropriate medically sound sources of information.”

“Patients are already distrustful of big pharma and the way research is funded. If their physicians also refuse to help them navigate these areas or are dismissive of their efforts, such distrust will also pass to them, to the detriment of both practitioner and patient.”

Read the complete post here. Follow Michelle on Twitter

Doctors who listen

Carly: “I went to hospital earlier this year. I was so sore, and a bit miserable. I saw a junior doctor, one I had not seen before. I spent an hour in the consult room, talking to her about Ichthyosis, but also my job, blogging, wedding plans, travel and the Australian Ichthyosis meet.”

“Their compassion means I am a human being first

“She said I was the first patient she’d met with Ichthyosis and she wanted to learn more than what she’d seen in the textbook. Her supervisor came in to provide further input into my treatment. Again, we talked about life, not just Ichthyosis.”

“And she told this junior doctor how lucky they are to have me as their educator. What a compliment. I am so lucky to feel empowered as a patient at my hospital. These doctors listen to me. They treat me as a person not a diagnosis. They see my potential and are proud of my achievements. Their compassion means I am a human being first.”

Follow me on Twitter: @EdwinKruysDisclaimer and disclosure notice.

28 thoughts on “A painful topic: what doctors need to know (according to patients)

  1. To me the main message of the video was that your GP will be with you for many years and through the good times and the not so good times. The associated message was that people should stick with the same GP as their usual GP, in order to receive the best care that will be based on a good knowledge and understanding of each other.

    Unfortunately these important messages were not made explicit, and the ‘lifelong learning’ bit at the end bore no relationship to what preceded it.

    Liked by 1 person

  2. you don’t need me to confirm that I have more than several supporting experiences to multiple points made in the post. the standard face-to-face part of a clinic consult is EIGHT MINUTES though. I have sympathy for many of the doctors coping with their organisation environment.
    Keep the good work coming.

    Liked by 1 person

  3. As a patient l thought the video was good. To me it reflected a doctor’s caring and understanding attitude.
    It is a brief scenario showing a few seconds of several interviews, assumptions are being made about his presumed attitudes.
    It says, trust your doctor, he cares.
    No GP can possibly have all knowledge of complicated health issues, that is why we have specialists.
    I have found it to be true that not all doctors want to know about your knowledge of your disease, so just find one who does.
    Knowing everything you can about your health problem is essential, can be easily found being sure to access reputable sources, and is to be shared with your doctor. If not, find one who will respect your knowledge and join with you in reaching the best possible outcome.

    Liked by 1 person

    • I’d prefer to be known as a patient/person with Ichthyosis, rather than a suffer please. Language around disability matters.
      Ichthyosis is very rare and there are many types of the condition, ranging in severity. And so doctors don’t often come across the condition.

      Like

      • Dear Carly, as someone who has never spoken to someone with ichthyosis I automatically used the word “sufferer” and will probably use it again. Sorry if this affects you, but I am an ordinary (depressed) citizen and cannot cater for every individual in Australia when I write/speak. My language around disability matters is completely uncontrolled as I feel too disabled to cope with every groups niceties. Maybe once I feel better.

        Like

      • Carly forgive me too please as I would have used the same word, thinking that every day you have to suffer things the rest of us don’t. My debilities are invisible, it’s no advantage. How lucky you are with wonderful parents who gave you the strength to simply ‘brand’ yourself, take the rarity and run with it. May you go from strength to strength with that.
        Doctors, as with parents and plumbers, come in varying degrees of charm, as the comments here prove. Congratulations on your discovery of a good one.

        Like

        • Certainly don’t want to make this blog a discussion on clinic staff but feel I should say a word in their favour. At a fairly senior age l can say I have never struck a rude or badly trained worker at a clinic, on the contrary l am sometimes amazed at how well they handle patients, emergencies and sometimes stressed fellow workers. Have many times had their caring assistance in a medical crisis. The same applies to pharmacists and their assistants. Find it very hard to understand the ‘princess’ tag. They are all in a caring profession and in my experience behave accordingly. A smile works wonders.

          Like

          • Val you obviously don’t live in Ballarat, and obviously are not enduring fibromyalgia and advanced osteoarthritis (diagnosed by rheumatologist 1993). Pharmacies guard all codeine products as if they are pure heroin. There is no need for them to demand my drivers licence in a menacing way, when I am bent over, an aged person, and a regular customer of the pharmacy adjunct to the clinic of the doctor who prescribes my NSAID.
            The topic here is “what doctors need to know” and practice management is relevant.
            A goddess receptionist dismissed curtly my elderly friend for whom I had obtained an agreement [because I have been his regular housesitter for several years] from the doctor who owns the large practice, that he would take her on. My elderly friend meekly left. She had moved from Melbourne to be near her daughters, without understanding the state of regional health and had tried many practices and been refused. Many established Ballarat practices have signs ‘We do not take new patients’.

            Like

  4. Although I didn’t think the RACGP video was terrible, I thought it would fail to communicate anything much to the poor, minority ethnic and diagnostic groups, and of course our First Nations Peoples. It was very white, middleclass and bland. And I’m white and middleclass, so it may not even do much for my lot either! It needed to be more warm, friendly and inclusive without being totally “matey”. Perhaps they need a different video production company!

    Like

  5. Some of the things that have made good GPs in my opinion is one who upon being asked about a theory found on the internet admitted he had never heard that but could see how it made sense and said go for it as it could not hurt. It was in relation to a test.

    My wife had a rare heart condition. One that cardiologists could go through their career and not come across because most who had it died as kids. It was actually a couple of problems. Many just could not understand that she had two perfectly functioning lungs but one was not connected to the heart. they thought she only had one working lung.

    One GP had who I found was good was always late without fail unless you were the first appointment of the day. Once we spent five minutes discussing a book and movie (I had the book with me). What it meant was that I had a good relationship with him. That meant I told him everything he needed to know so he could give me the right treatment. If I found a GP cold and distant I would give minimal information to get out as soon as possible.
    He was also honest about what the medical profession does and does not know. Sometimes GP’s act like they know everything when truth is they simply don’t.

    Liked by 1 person

  6. I just had my gall bladder removed after more than 2 years of issues with it & about 6 months of continual terrible pain, difficulty breathing as the pain affected an oesophageal spasm I have issues with and after massive weight loss. Test after test said it was fine, but obviously I was not & there was a history in my family, my sister went through the same problem & my Mum died due to sludge build up that didn’t show in a scan blocking a duct to her pancreas.

    Still I had people say it was my stomach, or stress, that the pain of the attacks could not be my gall bladder. I had a psychologist try to say my gall attacks were psychosomatic. I researched attacks for all organs in that area, I knew the symptoms I knew the location. I knew what it was. 2 surgeons on the day of the surgery about a week ago again tried to talk me out of it. The only reason they did it was some sludge had FINALLY shown up in an ultrasound. Every other test was “normal” over all that time. When they opened me up my gall bladder was not normal at all. It showed inflammation, adhesions and evidence of long term attacks. I haven’t read the report of the internal biopsy yet. Even as I came around from the anaesthetic I already felt better.
    A week later & I am slowly recovering after months of terrible unnecessary illness.

    Best of all in 3 weeks I am going in to have more surgery to remove my reproductive organs & mop up the last of cervical adenocarcinoma found late last year, I had been gradually becoming ill with that as well & tried to tell my GP who had not even asked me once in 6 years where was I having my pap smears done. Over & over I told him that I felt something else was seriously wrong. With that I gained weight very rapidly & had awful pain, heavy clotting, spotting, etc & felt beyond exhausted. He told me the last time I saw him that it was because I was overweight & if I exercised more I would feel better. Within a week I went to a women’s clinic & the cancer was found luckily it seems, in time. Yes, I should have sorted the pap smears myself, but I was dealing with a few other issues such as my gall bladder, thyroid problems, some interesting neurological symptoms, etc & time went past easily. I mentioned peri-menopause, he told me there was nothing he could do to help with that. This was only a few years ago!

    I now have a new GP who took ages to find, a woman that I like & I am learning to trust as she LISTENS to me. I am not a Dr, but I have an IQ of 131 & I KNOW my own body. I am not a fool or a hypochondriac or an addict seeking pain meds. In fact most serious pain meds make me ill, so I have to do without a lot of the time. I am also NOT depressed & I am TIRED of specialists trotting that out as the first excuse for everything that puzzles them. I have actually had depression for 2 years a long time ago, it was successfully treated. I know what it is like I know how it feels & I also know when I have it! I am also sensible enough to be able to work out a genuine medical web page with serious advice and research, from those selling snake oil. I know many people take time to learn the difference between them, but instead of throwing a child like temper tantrum because a patient has dared to try to educate themselves, I would suggest Drs actually get online themselves, so they can advise their patients on good places to go for information & find out about reputable health advocates. It is sheer desperation from experiences such as my own that turn people towards online info & questionable sources of information such as the Dr Oz Show.

    Some quotes from a couple of specialists over the years:
    “There, there dear, its not ALL in your head”.

    “It could be far worse, it could be cardiac problems” (This when I was in so much pain I could barely stand or walk).

    “I see plenty of blue eyed middled aged women with “this”, its like gulf war disease”.
    That quote is a favourite of mine it was from a top neurologist at a major NSW hospital. He would not admit what he thought “this” was.

    Most recently an endocrinologist suggested a change to my liothyronine meds for my thyroid. Within days it caused my throat to swell shut & bleed & swell externally as well, with severe flu like symptoms. He then had the audacity to say to me: “Oh, but you felt better after you did it right?”
    Yeah doc, sure I did.

    Liked by 1 person

  7. First, many thanks for your column, and for the research and discomfort that must have preceded it.
    Second, yes, I do understand that you need to be diplomatic, or else the worst offenders, the people who most need to read this, will reject the few words they bother to skim.
    Third, I still feel compelled to respond, because your description doesn’t begin to elucidate the depth and breadth of the problem.

    “Doctors often don’t know how to deal with disabilities”
    I have encountered only one medical practice that didn’t expect me to stand waiting and waiting and waiting to check in, then to check out. One. Ever. Not when I was post-op, not when I was on crutches or a walker, not when I was in a boot or knee immobilizer or cervical collar or lumbar or s/I brace or shoulder immobilizer or wrist and/or spica braces or ankle braces, splints, or AFO or (more usually) some combo of the above. Despite my having postural orthostatic tachycardia syndrome and neurocardiogenic syncope, so standing in one place can be a shortcut to syncope. Despite my having cervical and thoracic and lumbar spinal and foraminal stenosis, severe disc degeneration, a ruptured disc, etc, so that when I stand or even sit upright too long, my legs stop working and I lose bladder and bowel control.

    Also, I get stupid really quickly when vertical. So keeping me that way and asking me to repeat myself over and over is not good. And taking the final iteration, when I can’t pronounce my last name or remember why I would want to, and using that as the definitive version? Bad idea.
    Many, many people have writing difficulties or one sort or another. Let me downloads our paperwork in advance and do it in my computer over the course of several good days (better give me at least a week, so I can catch those good days), and it will be clear and complete and legible. Hand me paperwork at check-in, to do before this appointment, and it will be incomplete, incoherent, illegible.

    “Doctors sometimes blame patients for treatment failures”
    Often. Very often.

    “Some doctors find it hard to accept patients as experts”
    Most. But I fire them quickly.

    “Doctors don’t always communicate well”
    Good communicators are precious as jewels, and twice as rare. Physicians who will actually look at the patient are rare; ones who will listen are rarer. “Expert syndrome” is rampant, particularly among male physicians (this phenomenon is well documented in medical anthropology).

    Personally, I don’t need another best friend. I need a competent clinician who will not blame my joint issues on my weight (n.b.: I was underweight and over-trained until the joints went south).
    Oh, and speaking of weight, no, I don’t need a diet — the carefully chosen 1,100 kcal a day I consume is already more extreme but better balanced than whatever you were suggesting; and no, I am not eating too little, if I eat more I gain more — I need to find someone who will properly address my multinodular thyroid and pretty clearly hypothyroid status (dear ex-endocrinologist: the dysautonomic tremors I got after your staff had me doing laps of your office do not mean that, despite all blood work and all other symptoms, I am hyPERthyroid, really they don’t).
    I need a doctor who will not tell me I could not possibly have a broken foot // torn ligament // separated or dislocated this that or the other, because I am not …well, basically, acting like the stereotypical “hysterical female” (n.b.: the foot was broken, ligament ruptured, disc failed, shoulder badly separated, rib dislocated, knee dislocated, etc). Oh, and folks, when you make me play that role in order to get treatment, even though I don’t have energy to spare for that nonsense, don’t you dare then write my problems off to nonexistent anxiety attacks.

    I need a doctor who will not tell me that my shingles can’t possibly be shingles because I am not old enough yet. If only that were true. (I’ve had three episodes; my younger sister has had one. Yes, our family has a weakness for the herpes family.)

    Me? I have the recently described trio of Ehlers-Danlos Syndrome (ednf.org), postural orthostatic tachycardia syndrome and NCS (dynainc.org/Dysautonomia), and probable mast-cell activation syndrome (mcad or mcas); Sjögren’s Syndrome (Sjogrens.org); celiac and “IBD” problems to be elucidated later, to which dysmotility and EDSer’s colonic toruosity appear to be major contributors; allergic asthma; various neurological sequellae to the severe CNS Lyme disease I had a decade or so back; an ever-increasing and really annoying collection of allergies possibly explained by mast cell issues; an intermittently positive ANA; possible Factor XII deficiency, based on routine blood tests to which I’ve recently gained access, and yes it would have been nice if someone had been willing to look for that sort of thing sometime in the forty-some years I’ve been mentioning easy bruising and showing photos to explain what I mean.

    Phew. Yes, you kind of struck a nerve. Many thanks for taking a look at doctor-patient communication from the other side of the mirror.

    Liked by 1 person

    • Hi Ginny I must comment re shingles because since my friend got it I am an expert. It is an epidemic in Melbourne Victoria. Despite her wealth, and despite AUS possibly having the best health care in the world, the medical assistance she got was hopeless.
      Because attention must be very immediate to be effective, the only solution is immunisation and I urge all readers to find the money, soon to be pharmaceutical benefits listed we hope.
      wishing you good days.

      Like

  8. I wanted to say a huge thank you to Edwin for taking the time to read all the posts that came his way when he agreed to read patient blogs. This post captures many of the issues patients face. There are many fantastic doctors and now 9 years after being sick I have a great team but it took time. I’m lucky in that my life circumstances allowed me to keep searching when I was faced with ignorance or hostility. However not all patients are that lucky and it is those that I worry most for.

    The common refrain of if you don’t like it change is often tossed out when patients have a bad experience with a doctor. It is easy to say if you don’t like a doctor, be it GP or specialist, change, but the reality is that it is not always possible for some patients. For example if you have a particularly rare disorder there may be only one or two treating specialists in your state, or in some cases country.Issues such as finances mean that for some they cannot afford a private physician and must go through a public system where referral may be pot luck. Finances may also mean that patients do not have the means to travel to other cities. Mobility issues also affect the ability to travel to other clinics. Rural and remote patients have even less choice and in pushed medical clinics many GPs close their books and patients are relegated to a single GP with no choice of movement. There are also those patients not confident to confront or correct a doctor and simply agree with whatever they are told. For many patients the medical system is a foreign land and low levels of health literacy mean they don’t know how to negotiate the system or information they are given. It is for these patients that I would love to see a change.

    A good GP is like gold. They are the person there for the long term. I haven’t had a GP for life as the original video implied (and in this mobile age I wonder how much this holds true) as I’ve had to move around, but I have been lucky to have a series of great GPs and I am very grateful for their efforts. There is an idea that rapport and relationship are somehow time intensive and therefore difficult in a time pressed consulting room, but nothing could be further from the truth. It takes little effort to show you care and have a genuine interest in the person as well as the patient. The human touch is gold and in the case of the GP I have now it was clear from the first interaction that it was present. That human touch encourages patients to open up and tell the doctor things they wouldn’t have normally. That human touch breeds trust. It increases the likelihood that a patient will follow through with a treatment or take a doctors advice. And that leads to better health outcomes.

    In the end we both want the same outcome. Patients want to be as well as possible an doctors want their patients to be as well as possible. Opening up the dialogue in post such as this can help greatly in closing the divide. I know in the many patient groups I have shared this post, there is a unified sense of finally feeling heard and that is a great starting point.

    Liked by 1 person

  9. better Practice Management could have saved Ginny Ickle [above] from added discomfort. Medical Receptionists in my experience, seem to absorb by osmosis, all the status inferred by their doctor’s training/discipline etc, and act like Goddesses Of The Front Desk, completely unaware that EVERYBODY who approaches them either feels bad, or is frightened, or stressed by the cost, and this goddess complex seems to prevent them being gentle, or understanding and making concessions re behaviour and/or ill-chosen words. Too many clinics and pharmacies have instead, posted those signs saying ‘Do not be curt with our staff or we will throw you out’ etc.
    How hard is it to be a really good medical receptionist and study and follow the ways to handle a stressed ill person? It’s not rocket engineering.

    Like

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