Quality of Aftercare Through the Eyes of a Patient
Ben Steele speaks with David Festenstein, a former hospital patient, about his experience of the healthcare system after suffering a stroke which left the right side of his body paralysed, and what this taught him about the real benefits of patient-centricity.
David’s experience of the healthcare system is different from most of those you’ll read about, insomuch as is was largely positive, something of a rarity in these times it seems and a refreshing change from the usual doom and gloom. However he does admit that there were times when he felt as if his needs as a patient were not being looked after, but rather than finding issue with his hospital stay, his was a battle for continued support and aftercare to rehabilitate his body and mind once he left hospital.
“One complaint I had was with the follow-up treatment I received after leaving hospital. For me this represented a failure to see things through the eyes of the patient.”
“After my initial outstanding treatment in hospital I received two weeks of intensive physiotherapy by Bobath-trained specialists. I was told after I had finished that this was the end of my treatment, and there would be no on-going physiotherapy to help me improve my walking and further adapt to living at home. I protested at this sudden termination of treatment and they agreed to give me a six week ‘rehab’ course; at the end of this they told me this was truly the last physiotherapy I was allowed.”
The choice of words here is quite telling, David had had as much care as he was “allowed” – no mention therefore of what he actually needed. As a UK citizen, David’s treatment was under the National Health Service, a service notoriously under-funded and under-resourced, with a finite budget for after-care.
“At this point I had made significant recovery but there were still problems with my gait and I didn’t feel like I was back to my normal self. I had to employ a private physiotherapist, who told me that a lot of the exercises I had been doing in the ‘rehab’ course were meant to be only strengthening exercises and were not neurological exercises geared towards increasing my range of mobility. This was something I wasn’t made aware of while on the ‘rehab’ course, because the system wasn’t designed properly from a patient’s point of view. Healthcare resources are limited, and it is of utmost importance that they are allocated effectively. If the system had been designed from a patient’s perspective, it would have been clear that I wasn’t getting the type of physiotherapy I needed. Two years later I again experienced what can go wrong when the system fails to understand the needs of the patient. I had keyhole surgery, after which I developed complications meaning I had difficulty walking. At this time I was offered no ‘rehab’ therapy at all to help me regain movement, although I later learned that this is usually required to get over the surgery I had.”
David sees these as examples of the healthcare system failing to listen to the needs of the patient, something he thinks is vital. “When I talk about these matters I usually describe it as a ‘your world, my world’ model: how to connect ‘my world’ as a patient with ‘your world’ as a physician. I think now we are starting to connect the two, which should result in a more natural delivery of health care. The exemplary professionals I dealt with had this ability to deal with the patient feedback, and when their approach wasn’t working they would change what they were doing.” According to David, this move towards patient-centricity is more noticeable in some areas than others.
“There were people in the team who looked after me who had that deep level of empathy, and who could communicate that through voice tone or body language, so that the patient feels like they understand their world. If these exemplary health practitioners could be identified, studied and their interactions codified into some kind of standard training effort, I think that would be excellent. In every healthcare system there are going to be exemplary staff, and they need to be tapped into, as an amazing resource in the system.”
Another thing which can make the difference between a positive and a negative patient experience is the extent to which care is co-ordinated across different stages in the patient’s journey, “my experience is that when the system is working well, it is because it is joined up. All the procedures they needed to do when I had a stroke were centralised and controlled by the stroke unit. Yet for the keyhole surgery, treatment took place at a hospital and then the follow-up was thrown out to the GP to deal with, which lead to me not getting the care I needed. In this case, the system needs restructuring so that even if the patient is in a different location geographically, the care is still being managed centrally.”
Patient communities are becoming more and more important, both for patients themselves as they seek to understand their conditions and for physicians and pharmaceutical companies searching for ways to improve the patient’s experience in the healthcare system. David agrees that patient communities offer multiple benefits for the healthcare system: “I am friends with a fellow stroke survivor who says that the support she got from a group on Facebook was absolutely incredible, she even went as far as to say it had saved her life. I can see that the support offered by communities such as PatientsLikeMe is incredibly important. People feel part of the community and that they are not on their own in dealing with their condition.”
While David did not access an online patient community in his journey to recovery, he did attend a support group. Interestingly, unlike online patient communities, the support group was made up of a mix of patients suffering from various long-term conditions. He felt like this helped him to connect to others and contextualise his own experience – “I think it is important to talk about the difference between patients, and how this effects what people get out of patient communities. After all, we are all different, and we process information and experiences differently. It is very helpful to see how other people process experiences.”
David believes that gaining knowledge from a patient about how he or she deals with a medical condition is a step on the road to helping others deal with the same condition. “What interests me as a communication specialist, and my consultant at the hospital was interested in this as well, was how the techniques I developed to aid my recovery could be used to help other people. This was a great example of how things should be done, as here was a health professional trying to look through the eyes of a patient and use that experience to improve the lives of other patients, instead of simply believing he knew best. I think this is an example of the new patient-centric direction that healthcare is taking both in the States and to some extent in the UK too.”
You can read more about David’s journey to recovery, on his website, www.strokerecovery.co.uk.