A recent question has reminded me of the difficulties some of us encounter when we are diagnosed with uncommon and rare conditions.
Doctors can not have in-depth, up-to-date knowledge of every condition, many struggle to keep up to date with the most common ones they encounter.
Some of us have conditions which many cardiologists rarely see during their careers.
But it is now more possible for us to get information and access research and medical publications as well as sharing information with other people affected by such conditions. So we “patients” can often know more about our conditions than most doctors we encounter. We certainly know more about what it feels like to live with these conditions.
My big question is:
How do we respond to doctors who know very little or know much less than us and are reluctant, unwilling, or too arrogant to believe that we have knowledge and experience they could use?
This is often an issue on an individual level, but it is also a larger scale issue as doctors are more pressurised and become more specialised.
I hope this is a place where some constructive sharing might help many of us.
Written by
fishonabike
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I agree with you but my feeling is that until ALL doctors listen to us and stop dismissing what we tell them nothing will change. I don't have a problem with them lacking the knowledge, but I do have a problem when they perpetuate myths and inaccuracies because they don't listen to their patients who actually LIVE with a condition. How many bother to glance at a support group for a condition to see what symptoms which may not be listed as an official symptom but is commonly experienced by sufferers.
I worked with the public all my working life, well over 40 years, and you need a different approach with different people. Yes, you get misinformed people but it's possible to explain things to them so their understanding is better.
I think you are absolutely right. My personal bugbear is the poor quality of NHS patient information, especially about rarer conditions; proper investment in more detailed guides could do a lot to promote shared understanding. BHF is great on some things, not so good, and occasionally pretty bad, on others.
One approach could be around training people to 'be better patients' using some ideas about 'managing upwards' to improve your relationship with the consultant in your life.
I made a huge mistake in my first cardiology appointment thinking it was a booking for an hour - because that was the slot offered - when (I think) the cardiologist's goal was to keep every conversation with a new patient under 10 minutes. I also made a huge mistake getting referred to the wrong cardiologist in the wrong hospital with the wrong specialism; happily, I was able to use the 'second opinion' approach and negotiate a transfer to a cardiologist I am now happy with and respect, even when - or particularly when - I am challenged in relation to what should be done about my condition. (But, and it is really important to me, I do notice that when the consultant writes up our discussions, the letters to the GP have included very careful, accurate and succinct accounts of what I have said in the course of them.)
So, some other things I would say are: understand the constraints they are under, respect the breadth of their knowledge and experience which, among other things, will mean they often get quite good at spotting simple and common explanations and solutions, and most likely outcomes, and at the same time recognise that they can't know everything or even have time to read everything.
Accept that you won't have infinite time to discuss your condition with them, accept that the relationship will take time and effort on both sides to make it work (I was advised early on that it takes at least two clinics before you really get anywhere), accept that sometimes it just may not work and you may need to find someone else for a better fit with your condition and your own approach to living with it.
The thing that scares me a bit is that I am exceptionally well placed to negotiate these things. I have medically qualified family members and spent years working as a medical journalist - though following an area of medicine outside cardiology. But still, I made a heap of mistakes. What chance does someone without those advantages have, to make the system work for them?
It was comments you made in anther post which prompted me to ask my question.
You make some interesting suggestions but my concern about many of them is the word "accept". That is exactly what we already have to do in many cases and I am sure I am not alone in feeling that this is equivalent to giving in.
You stress the limited time we have to build a relationship with the doctor, but that is just as much their responsibility as ours. However we all know that in hospital settings we rarely see the same team member twice in a row.
Also I am sure we are all in awe of the breadth of experience and depth of knowledge doctors need to build up in order to even qualify, however thee respect should be mutual and it sounds like you have also encountered the medics who don't respect our lived experience and built-up knowledge.
It would be helpful to have some strategies which we could use to help cut through the barriers to effect partnerships. I attended an "Expert Patient" Course offered by the NHS for people with chronic conditions several years ago, i found it very helpful but it would help if doctors attended courses on how to interact with patients who are experts in their own bodies and conditions.
Thank you very much: I do agree with and take on board your comments.
I spent years working in the HIV voluntary sector, where the relationship between medical leaders and community advocates was and remains profoundly different to the relationships I observe in cardiology, and a lot of that came from the understanding on the part of the doctors that if they failed to engage communities as active partners, their job would be impossible.
That experience wasn't unproblematic or without conflict, and managing that conflict in a creative and positive way was an achievement on both sides. There's been recent discussion of this around Anthony Fauci's retirement; if you Google 'Peter Staley' and 'Anthony Fauci' you get a flavour.
Meeting cardiologists definitely has given me a case of culture shock, though there are some who I do think are good communicators and open to discussion and engagement.
There are problems with 'activism' - especially in the era of Twitter, Trump and Musk - and I fully understand the horror that comes over doctors looking at what has happened in some areas, particularly around chronic fatigue syndrome/ME, with some really toxic elements. It's been claimed that some researchers have changed fields because they can't be doing with death threats. One of my own career highlights was to be listed on a leaflet as a perpetrator of 'genocide' alongside many people I greatly respect, for daring to support a controversial clinical trial. The authors of the leaflet 'knew' what the result of the trial would be, and at one level they were right, and yet the result of the trial was that medical practice changed overnight, in a way that wouldn't have happened without it.
So, there's challenges about how to move things forwards in the right way, but I do agree with you that they need to move forwards and also that it will take action and change on the part of professionals as well as patients/the public to make it happen.
One of my current projects, where I'm definitely 100% in support of the BHF, is as a public participant in the work of their Data Science Centre, looking at how to promote better use of imaging data. So, all is not hopeless ...
I started working in the NHS in 1980 and have worked with a variety of doctors, nurses and other health professionals as well as being one myself until my retirement. What you say about challenges is far from new to me, but I hope other readers find that it helps them understand the problems.
Despite my own years of experience at both ends of the stethoscope/syringe etc I am still looking for better ways for both sides to work together. What would be new and helpful is some positive, constructive ideas.
As I see it, fishonbike, the answer you crave may only be found in a recognised and well respected body articulating on behalf of the sufferer. I choose the word sufferer over the word patient. The BHF is one such body and their views and articles are well respected. However, they, like Drs, consultants and nurses are limited by their size to generalistic comments and communication. Your mecca of having a patients voice on rare conditions may require a plethora of specialist bodies, earlier referred to as support groups. Perhaps one way to overcome this would be to set up an overarching body ,say a charity, to act as an umbrella for each rare condition. The advantage being that the overarching body becomes the renowned, so called, expert in communication with the medical fraternity.
I am grateful to those unsung heroes, and during my own time as a nurse did my best to play that role at times - but it seems that all to often we need to know how to be our own heroes when we should not even be in a situation where heroism should be necessary
tips on quiet individual heroism are probably what i need!😀
interesting that my search for suggestions and strategies is seen a a search for a single answer, a "mecca" or a patient voice. An overarching body would not address the individual issues we have with individual doctors.
They do exist, and thank goodness for our charities like the British Heart Foundation and Macmillan, MDS and so on. Also this forum. I was actually referred here (to the MDS section) by either my GP or a member of the Macmillan team at the hospital where I was diagnosed with a rare blood cancer. So I don't expect any help from my GP but here, and the nurses team on the end of the phone - there is always someone with knowledge and understanding if we need advice. There are books published about blood cancer that explain to us and to our families what our disease is and how it's likely to develop, and there's a lot of information from the charity online. We could do with them becoming, as you say, the renowned, so called, expert in communication with the medical fraternity.
Thanks for your reply. It's good to hear that some professionals accept these informal forums as a place of information sharing. If only that would grow and enhance the overall experience. Good that you have been able to find some of the answers you are looking for.
To be honest, Wooodsie, after the initial shock of the diagnosis, and finding out all I could, and educating myself a bit, I'm not sure it affects me very badly (yet?) I have compression fractures and I need no reminders that I have them, but they're nothing to do with the MDS. I was originally diagnosed with both MDS and MPN - both rare - but recently my blood tests have shown that my platelets are really normal, so I don't think I still have an MPN. Not sure my haematologist would agree, but I'll just have to keep watching and waiting.
I recently had this piece published in the European Journal of Cardiovascular Nursing about my own cardiology journey which covers similar points doi.org/10.1093/eurjcn/zvac115
thank you for pointing out the "What Matters To You" initiative - a lot to take in there and I will explore it
The question ' how can I support you to live well with your heart condition ?' should always be the starting point - however most of us are not met with that and shifting the current approach will not happen instantly
I think the fact that no-one has yet come up with practical suggestions or examples of how they have stepped through the "Me Doctor, you patient!" barrier indicates just how difficult it is!
I've said a number of times on different forums that I feel very fortunate to have been diagnosed with my own condition by sports cardiologists, in that their ethos starts from what the individual is aiming to get from their physical activity, and to support that as far as they can.
The question 'what matters to you?' connects, as some of the materials you've linked to also mention, with the concept of shared decision making, which is definitely where sports cardiology aims to go, in managing uncertainty and risk.
In my experience, there are still some problems with it.
The cardiologists may respect your right to take some level of risk, but do the sports governing bodies and insurance companies? The latter tend to look for clear answers, even where the evidence isn't as clear as anyone really wants.
Also, I may feel that the balance between risks and benefits of treatment favours treatment, given what I want to do, but who then pays for it? This is a really tough question when the treatment involves major surgery ... and, even after major surgery, it would most likely reduce, but not eliminate, risks.
Lots to relate to there, even though my issues probably equate to less than 1% of yours.
For me the situation has got worse since the pandemic when my GP practice chose not to accommodate 1 to 1 care - patient to their personal GP. At one time I had a good relationship with my GP and was able to discuss medication and health issues in considerable detail with him. Now all I get from GPs at the practice, most of whom I have never even met, are those dismissive comments, usually related via the clerical staff. Apparently after a heart attack, two stents and a triple bypass I am now "fixed". If ever there was an untruth, that must be it.
In an era where communication is key, it seems some in the medical profession are headed for the Dark Ages, intent on dismissing the patient's view. I believe this is to enhance their status and self-importance. This is not good when patients' lives may be at rusk. The only way this can be overcome is through education and unfortunately I cannot see this happening in the forseeable future.
I feel it reflects the experience of many who have been at both ends of the stethoscope and confirms my long-helped belief that a dose of ill-health should be a required part of the training for all health professionals!
My own ill-health during training made a profound difference to how i responded to the people i was meant to be helping, sadly it does not seem to have taught me how to help other health professionals make use of my experience and knowledge.
Thank you ever so much for the article, it echoes my own experience of first being referred to a crisis-oriented general cardiology service, and then moving to an Adult Congenital Heart Disease (ACHD) team.
As you describe very vividly, the culture is very different. Even though my first ACHD clinic with my current consultant was over the phone, I would say it was one of the best medical discussions I've had, took 30 minutes.
My first in-person clinic with the consultant included a review of the full-aorta and neck MRI scans they had arranged for me, was equally long and answered a host of questions.
Even where we've differed slightly on the way forwards, I've definitely felt listened to.
I'd say the difference was between encountering a service which was focussed on finding out if there was an immediate crisis that could be fixed and, if not, aimed to get rid of me ASAP, and one which recognised that I had a diagnosis which had changed my life forever and was welcoming me in to a rather odd kind of family.
The question is, how can we make health and social care services generally more like the ACHD experience, and I see that your own work is focussed on exactly that point.
The GP in charge of my surgery is such a man. (It does seem to be men who have this attitude).
I once thought that he was excellent, in that he was confident in his diagnoses. Then I got an attack of gout. He said it absolutely was not gout, and was uninterested in my agony.
I ended up seeing a rheumatologist who charged me £200 took one look and said gout, he treated it appropriately and it improved.
The GP is still there, and was just as dismissive when I presented with unusual angina after having had a STEMI. He said that it could not be angina because it did not happen immediately during exercise.
What to do about it?
Find a GP who will listen and not dismiss your ideas as crackpot because they don't fit in with preconceived ideas
Present the GP with clear symptoms and a clear diagnosis. Be prepared to argue your case.
The latter is difficult because whatever you may think about the doctor, he/she has more medical knowledge than you, and may well shoot your ideas down.
You are absolutely right, and it makes sense that the more people there are researching online etc, the less work the doctors need to do on our behalves. It's only common sense.
We have to persuade our GPs that we are mostly sentient beings with some education behind us - and more recent education that we have been forced into following diagnosis of a rare condition. I think they can only learn that we are not idiots by listening to how we speak and present our reasoning. Perhaps a well-written letter at some point would convince them. One of the problems is also that as we age, some of us go into a decline, and if we're not careful, we will get dumped into being "one of those elderly people" who we'll have to talk down to or they won't understand. It's easier just to give them a prescription and see what happens. We've got to put a stop to that attitude!
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