Since 2014, first-year medical students at the University of Leicester, have been learning how to bring online consultations into the real-world of health and care delivery, with Patients Know Best.
This year, the students wrote reflective essays of their experience. The winning essays were selected by a group of volunteer patients, for the 2020 prize draw sponsored by Patients Know Best.
Understanding the depth of learning outcomes has been profound. This education programme is certainly something we will continue to support as we welcome our next generation of health and care professionals to the sector.
My Experience of Promoting Health and Wellbeing with my PKB Patient
To demonstrate exactly how vital this learning is for our future professionals, we have shared their winning entries below:
In reflecting on my experiences with Patients Know Best (PKB), I hope to consider the following: what preconceptions about patients and the patient experience I may have carried into this exercise, how those preconceptions impacted my experience, and how I will consider them going forward. I would like to also consider how PKB as a model for patient-centred care can be integrated into my future practice, and whether my experiences in these last two years have changed my beliefs about the value of such systems. Finally, I will consider my learning goals, and attempt to implement a plan for developing them.
Introducing Mrs ‘W’
To begin, I’ll set the context of this reflection by briefly describing my experiences with PKB to date. I was introduced to my PKB patient, who for the purposes of protecting patient confidentiality I’ll refer to simply as Mrs W, in late 2018, in my first semester as a medical student. For the last 18 months we have communicated through the PKB message board and have met in person three times. Our discussions have ranged from questions about Mrs W’s lived experience of illness, her hobbies and lifestyle, as well as her experiences of social prescribing. On the few occasions that we did meet in person, we discussed her life, her family and how living with a long-term condition has impacted both. Throughout our interactions, I have tried to provide advice and suggestions about how Mrs W might implement changes to her lifestyle and activities that would benefit her health and wellbeing.
‘bed four’ or ‘the specials’
Before meeting Mrs W, and indeed before starting as a medical student, my beliefs and understandings about patients and the healthcare sector, in general, were based on my lived experience of being a patient myself, caring for my family members in times of illness, and primarily on my work as a healthcare assistant. For two years I worked first as a Healthcare Support Worker in a medium secure psychiatric unit, then as a Healthcare Assistant in a large London hospital. Whilst these experiences taught me valuable lessons about the role of healthcare staff and systems, if I reflect on how they made me see patients, it would primarily be as passive receivers of care. Working in a busy, often stressful role, in which therapeutic relationships with patients were often short-lived, and at times very superficial, it seems clear to me why I may have come by this belief. This view was probably reinforced by working under even more stressed and busy nurses, many of whom appeared jaded by the system. On busy shifts, patients were often simply referred to as ‘bed four’ or ‘the specials’ (referring to their status as being under ‘special observations’ aka 1:1 nursing). Whilst I would never have consciously admitted seeing patients in this way, I can see now how my frustrations with the pressures of the work often coloured my interactions with my patients. Whilst this is understandable, it is something I would like to be more cognisant of going forward.
Considering patients as people with agency
Getting to know Mrs W and hearing about her experiences has provided me with the opportunity to reconsider these past frustrations and move away from seeing patients as passive and lacking in agency. Mrs W would often talk about how brief interactions with doctors, be it GPs or consultants, would have a huge impact on her mental wellbeing. For example, after Mrs W was admitted to an Egyptian hospital while travelling with her husband, she was told that 60% of her stomach had herniated into her chest cavity (this later turned out not to be the case). On her return to the UK she was told by a GP that she would likely not be suitable for surgery as she would not survive the operation. This single comment, probably uttered in a few moments of a GP’s busy day, stayed with Mrs W and profoundly affected her mental wellbeing. Perhaps the GP was simply considering surgical referral protocol and didn’t want to waste time making a referral that would go nowhere. Reflecting on when I have been in similar positions in the past, I can recall times where I have perhaps not considered fully the consequences of what and how I have told a patient. Rather than simply taking this advice and sitting on it, Mrs W sought out several second opinions, including from private consultants. When one surgeon told her the decision about surgery was not up to the GP but up to the anaesthetist, Mrs W told us “it felt as though a huge weight has been lifted off me”. Simply being told that surgery was not out of the question was enough for her. Hearing this experience has helped me to consider how even a small interaction can have a big impact on our patients, and how important it is to be mindful of this when dealing with frustration or time pressures. I can also reflect on how Mrs W showed agency in her response to this situation, seeking a second opinion and even paying £130 for a private consultation, just so she could put her mind at rest. In the past my thinking of patients may have ended on discharge, especially considering how many came through my ward so quickly, but this experience with Mrs W has encouraged me to consider how patients are people too, and have lives outside of the ward or consultation room.
‘these words have really stuck with me’
Considering patients as people with agency has also encouraged me to ask how I can facilitate patient choice and values in the future. On several occasions, I spoke with Mrs W about options available to her that might improve her health and wellbeing. Reflecting on our first conversation, I think I may have been more interested in pushing my own agenda. Perhaps the responsibility of being told that as a first-year medical student I was being trusted with forming a therapeutic relationship made me feel somewhat daunted. Whilst I am quite comfortable speaking to patients, the impact I know my words can have on them does make me anxious, and I think that anxiety can lead me to push ahead with my internal script or agenda. Having now spoken to Mrs W on several occasions and having heard her talk about her own health and her view of the role of doctors, I see that patients are not necessarily interested in being spoken at, or at simply being told what to do and think. Mrs W told me early on, “the healthcare system is a two-way thing…explain, listen and if you do not agree, say why”. She is not afraid to challenge doctors to justify their position and will actively seek out second opinions if needed. I’ve therefore tried to make further consultations more focused on what the patient is looking to get out of the interaction. When we last met, at an event about social prescribing, I asked Mrs W what was most important to her in adopting healthy behaviours. She explained that spending time enjoying nature with her husband was something that makes her feel like being released from the prison that a long-term condition can impose. These words have really stuck with me and made me realise that if patients are to make healthy life choices, they must be the ones to make those choices, not doctors. It is our role to facilitate that choice, to understand the patient’s feelings and concerns, and provide them with a supportive environment to make real change. Based on what she had said, I decided it would be more beneficial to tell her about a new app that could help her and her husband find new and interesting walking routes, rather than pushing ahead with my plan to recommend public exercise classes. As a result, Mrs W was much more receptive to my suggestion, and this made me feel justified in taking a more patient-centred attitude.
An alternative way of understanding the patient-doctor relationship
If I were to set myself the challenge of taking forward the lessons I’ve learned from PKB, I want to hold the patient’s own emotional state, life ambitions, and concerns in the forefront of my future consultations. Moving away from the passive and restrictive view of patients I may have held in the past, I would like to consider that patients are active agents in their own lives, and in their experiences of the healthcare system. I hope this will result in a better experience not just for my future patients but will also help me deal with the frustrations I may encounter as a working clinician. Overall, my experience with PKB has been a hugely positive one. It has helped me feel more optimistic about the healthcare system, and passionate about the importance of patient-centred care. I believe that the PKB model offers an alternative way of understanding the patient-doctor relationship. The benefits of this patient-centred care (PCC) are already well-proven, and systematic reviews have found “stronger evidence for positive influences of PCC on satisfaction and self-management” (1). The importance of carefully considering what one says to a patient, and framing the discussion around their wishes, is something I will implement into my future practice. PKB has been one of the most valuable learning opportunities of my medical school career so far, and I’m very grateful for the trust that Mrs W has shown by sharing her experiences so candidly.
1 Rathert C, Wyrwich M, Boren S, Patient-Centered Care and Outcomes: A Systematic Review of the Literature. Medical Care Research and Review (2013, 70, 351-379).
In order to reflect on the experience, I have been re-reading the correspondence that we as a Belbin have had for the last two years with our assigned patient, named Patient X to maintain confidentiality, who has been living with Multiple Sclerosis (MS) for the last 30 plus years.
There are certain traits of the patient that I will no doubt repeat, like the resilience and fluency in communication of our patient but I would say in completion of the process, respect and solidarity are what I feel predominantly. I find the easiest way to reflect on our communication with Patient X is by working through it chronologically as the pivotal moments for me are meeting the patient face to face, which sandwiches the online conversation we have had.
Describing our ‘typical’ patient
As a group, prior to meeting patient X, we were tasked to draw an image of our 70-year-old patient and any potential descriptors we would expect. Naively we used words such as frail, expected a walking aid and greying hair. Looking back it was so shallow, not even considering non-physical conditions or the fact that age is just in fact a number and frailty does not necessarily correlate. Thus to our surprise, patient X walked in well dressed, walking independently, black hair, looking not a day over 50, to be honest. This meeting was the first point of self-reflection, we had such a fixed stereotype in our heads- an older patient with a ‘debilitating’ chronic condition but Patient X challenged all of those views. They were independent, had a great understanding of their own condition, a very positive outlook and lifestyle factors to mirror that – which in itself was almost difficult for us as brand new medical students. We come into the course hoping to be problem solvers and help those who are in need, but when that patient has those medical needs but is equally able to take care of themselves far better than we can, it was intimidating. We all left that meeting bit shocked, as our initial image had been shattered but was a great learning experience straight off the bat and had us excited for the prospect of keeping in touch with someone I personally found inspiring, I say at the risk of sounding cheesy or cliché.
‘doctors are gods’
The online correspondence that followed was propped up by the tasks we had been set by the university, including probing into the patients psychological and emotional impacts, lifestyle factors and healthcare experiences in general. Whilst reading back on our responses I almost winced at the slightly abrupt approach we had to begin with. Patient X was able to very articulately recount their experiences, in particular the hardest 2 years following their diagnosis, but we started off showing a lack of empathy or personality. I am glad to have seen we improved on that front, moving away from asking the questions required of us and instead asking things more relevant to the patient. This also reinforces the idea of the patient agenda I feel, and the significance of tailoring a consultation to that of the patient. I feel like when we did that, a warmer rapport developed, even small things such as the patient signed off using a nickname/ abbreviation, which we were able to refer to them as, reflected the easing dynamics. It is a small detail that I don’t think I noticed at the time but reading back on it, I can see there was a change in tone, to one that was less cautious. Looking back on the contents of the messages, their experiences were invaluable learning tools for us as prospective doctors. There was bitterness towards doctors, very much justified by the traumatic experiences. Patient X is eloquent, intelligent, and even has expertise in the area of healthcare as a physiotherapist. Despite all these qualities, the doctors were unable to treat them as a person rather than a case and that impersonal and almost arrogant approach, led to a very negative healthcare experience for the patient with long-term repercussions that they experience to this day in the form of anxiety before appointments. One of the things said by the patient was ‘patient-centred care is just a sound bite to me’ and that really summed it up beautifully, and is something I shall strive to change in my own practice, emphasising the importance of holistic care.
To conclude the first year correspondence, we had to present what we had learnt back to the patient. A daunting experience to say the least. As mentioned earlier, the strong, independent nature of the patient was intimidating for some of us, dealing with a patient that isn’t helpless or isn’t afraid to say it as it is, a trait which is also what I admire most. However, the presentation proved to resonate with the patient to our great relief. Thankfully the patient felt accurately represented – having described the struggles yet also showing they have come out of it as a multi-faceted, working parent of two grown sons in a happy relationship, something that wasn’t always the case after the initial diagnosis. It was moving for me too, I was so apprehensive but seeing the vulnerable side, the one where the patient gave in to emotions of the awful experiences, was humbling. It definitely culminated the experience on a positive note, and proved to us that the old school, ‘doctors are gods’ approach can be avoided resulting in more open, telling, conversations.
Understanding how to offer advice
This year’s tasks involved information giving to our patient. This has proven to be challenging in itself. How are we supposed to give advice to someone who has been coping with this condition for 30-35 years? As a result, we as a group went back to an over-cautious approach in which we were less clear with our questions leading to a communication gap. This may have been due to the long period over which we had no correspondence or the virtual platform of PKB itself where words can sometimes be misconstrued. In the future, though from this I have learnt that the best way to tackle uncertainty is by being clear and to the point, giving disclaimers as we did was only detrimental. The discrepancy naturally cleared up after the face-to-face meeting as the conversation came more naturally in a form we are used to. We found that some of the suggestions, for example, book clubs or mindfulness for socialising and overcoming anxiety respectively did not go down well, although the patient was understanding of our reasons for recommending them, they did not find either a feasible solution, which is fair enough. Maybe we could improve this by being less literal but the platform does make it difficult to have a discussion, as there is a period of lag between each reply. Having said that, I think as initial suggestions we weren’t off the mark, we implemented our own experiences, but dialogue would allow us to almost bargain to find a solution that serves purpose and comfort of the patient.
‘a profound moment to witness’
The third time we met our patient in person was as a part of a mental health history-taking session. Our patient provided an objective yet insightful case for both depression and anxiety based on life experiences of their own. It was difficult to hear our patient speak of their personal turmoil during the diagnosis stage, deteriorating health at such a young age with two young children – who the patient described as their greatest motivating factor and support in this period, it shows the dimensions to a patient’s lifestyle factors. It was an emotional and a very impactful moment. It was a moment of vulnerability and was a profound moment to witness. When I was on the hot seat of asking the questions myself I found it very difficult to face our patient and ask what felt like a checklist. On reflection this may be because I don’t want to trigger such upsetting thoughts or my inability to comprehend the hardships, I don’t know how much I can help. Our patient noticed my nervousness and reassured me that the fact we care is coming across. This is one of the greatest teachings throughout this process, that feeling listened to and genuine care goes a long way, allowing us to ask what we need to as medical professionals without being intrusive or condescending. This experience again softened the image of Patient X- someone who is strong by circumstance but can struggle too, a story many chronically ill will relate to.
A lesson for the future
Overall this has been a great experience in patient-centred care. It’s taught me that a patient doesn’t have to look or act a certain way to still have medical needs, which feels ignorant to say now but is a misconception many of us came in with. Additionally, a patient values being listened to and respected above all, optimising efficiency in communication and following care for both parties. It allowed me to reflect- feeling out of my depth with conditions I don’t fully understand or can empathise with properly can make me visibly uncomfortable. I also learnt how much I rely on face-to-face contact to be able to communicate best. Knowing these points, I will try and be more conversational on all platforms and be transparent with the patient even when out of my comfort zone. I am grateful to our PKB patient for being so great – transparent, insightful and strong enough to be able to relive hardships for us to learn from. In the future, I hope to transfer the skills from this experience to be a more personable, sincere clinician.