What is healthcare if not, at its heart, a relationship? We hear people talking of going to an appointment, or visiting the GP, or even seeing the eye specialist. What do they mean? I might argue that they may not notice it, but they are describing entering into a relationship where they will play the part of someone seeking care in relation to someone who will hopefully be able to play the part of providing it.
Similarly, as the consultation plays out, they may not notice that any relationship is happening – they enter the consulting room, describe their symptoms or complaint, and the health professional nods sincerely and offers care appropriate to their understanding of the issue. If all goes well in this relational transaction then healthcare is delivered, and both sides of the relationship can go home feeling fulfilled and happy, completely unaware of the relational aspect of what either of them have just taken part in. I often refer to this as the ‘John Lewis’ model of healthcare; A care relationship that goes smoothly, untroubled by any real relational anxiety, leaving both parties feeling as if something useful has happened. So smoothly in fact that the relationship element is almost invisible due to its mundanity – like the air around us that quietly keeps us alive. I would suggest however that for any healthcare to happen then to a greater or lesser degree this type of relational dynamic needs to be present. Interestingly I have never seen this overtly (or even covertly) stated within health service literature – in fact there seems to be a basic unstated assumption that everyone can do the healthcare relationship with equal capacity; that everyone has equal relational access to care.
But where do any of us learn to do this care relationship? We all start in relationships – in fact our psychological and physical survival is dependent upon it. A new-born infant will not survive long in this world if it cannot get into a relationship with a caregiver in pretty quick time, and after that on an ongoing and regular basis. In this regard it is a relationship of extreme vulnerability; a vulnerability that may not be noticed as long as it is responded to appropriately, but one that may become all too apparent if it is not. One might even say that continuity of care is essential for life, at least initially, and possibly for the full duration. This perspective throws a particular light on the care relationship, positioning it as one of the fundamental human experiences, and one that given its occurrence within such critical periods of development is learned quickly and so deeply that it can last a lifetime. But as with many of the things that we learn in our early years we typically do so in an unconscious way, meaning that we do not notice it happening (who can remember learning to speak? And who has ever tried to unlearn it?). We learn automatically and carry that learning into adulthood in ways that we are not always fully aware of.
The connection with healthcare provision should be clear. The healthcare relationship is one that maps very closely on to care experiences that we learned about at times that we did not know we were learning, and certainly at times where we had no choice in what we were learning. If we were lucky, we learned that being-in-need-of-care was a safe relational place to be, one relatively free from anxiety about how the need would be met. From these experiences we may then be able to go forward into the rest of our life with enough relational capital to freely access healthcare almost completely unaware of the resources we have that allow us to do so. We can walk into the GP surgery or hospital clinic troubled only by the anxiety related to the procedure rather than any fear about the relationship surrounding it. But this is not a universal experience.
There are many people for whom the earliest experiences of being-in-need-of-care were run through with large and at times chronic and unmanageable levels of anxiety and fear. Developmental trauma, just like healthcare, tends to be defined by, and occur within a relationship. For those whom being in early dependent relationships was primarily a frightening and deeply aversive experience, by virtue of trauma, neglect, or other forms of mistreatment, then the consequences can be a variety of life limiting injuries. These can take the form of the acute physical and psychological injuries associated with the various events they had to endure, as well as longer term physical and psychological consequences. Of these longer-term effects, a severe relational injury is something that can have profound impact upon an individual’s capacity to engage with anything where relationships are required – which is pretty much everywhere and everything. By relational injury, I mean a profound insult to the persons capacity to trust, connect and attach to others in ways that might allow them to get even their most basic physical, psychological and emotional needs met. And by severe, I mean an injury so profound that it is learnt as deeply, quietly and routinely as the learning of a language, and so can be just as impossible to unlearn despite different future experience. Such a severe injury can have life limiting impacts across all social and interpersonal settings and across the whole lifespan. From early education that requires a pupil to get into a teaching/learning relationship with a teacher, to the interpersonal and romantic world that require a capacity to trust and believe in the solidity of the other, to healthcare as described above. Such an injury can leave people with a deep feeling of disconnection to the human world they exist in, often exacerbated by a recognition that all around them seem to be able to the business of relating as easily as they breathe – making friends, going to the cinema, finding work, joining a running group…. Like a bird with a deep fear of flying, comfort must be found elsewhere, and there are many who find relationships with psychologically soothing substances are the only ones they can come to depend upon, filling the hole that smashed trust has left behind.
A severe relational injury, like any other injury to a life critical system, if left untreated can lead to a myriad of physical and mental health problems. But where is the healthcare provision that may help them with their growing sense of distress and isolation? Bounded by invisible relational barriers that only they seem to be able to see or feel. For healthcare systems were typically designed by the relationally healthy, and they designed them in their own image – organised around a never verbalised idea that everyone has the relational ability required to access care. But for those with a developmentally acquired severe relational injury, seeking care can feel to be one of the most dangerous things they could ever consider doing. Despite this, there are of some with relational injuries who do manage to seek care and offer some description of their need and distress, but who are then unable to access the care that is then offered. I have heard them called such things as, ‘Serial non-attenders’, ‘Smear defaulters’, and ‘Time wasters’, and seen many signs and notices around healthcare settings that come close to shaming those who do not attend offered care. Conversely, I have not seen much that attempts to think about what we as healthcare providers may not be attending to in these situations. All the existing responses locate the blame and responsibility onto the patient in a way that we would never get away with should we have placed a wheelchair clinic on the fourth floor of a building with no lift.
And then there are those that are just missing. Those for whom the health services may as well be at the peak of Mount Everest they are so relationally distant. Those for whom the being-in-need-of-care is the health problem. Those for whom the relationship with care itself is the life limiting condition. For those who try and get so far, and for those who cannot even manage that, my experience is that the condition is typically a worsening one. As care is not accessed, potentially treatable conditions worsen, and as conditions worsen and the need increases, so does the anxiety and fear about seeking care. And so, the injury is progressive in all the wrong ways. Conditions that may have been ameliorated with relatively straightforward care become chronic and lead to the development of secondary issues. The increasing sense of disconnection and aloneness leads to an ever-worsening state of mental health. The healthcare system is in sight, but the relational stairs are too many, too steep, too costly, too remote, too frightening. Too dangerous.
I would argue that for those with severe relational injury, the continuity of care is not the context within which care needs to happen, rather it is the care that needs to happen (as was actually the case for all of us in our developments.) This may not be easy work, as relational dynamics born in trauma can often be traumatic to be part of, and in the absence of a dedicated ‘NHS trust repair service’, difficult to fit into current job plans.
Those with severe relational injury are at least four-times disadvantaged. Firstly, their early experiences leave them at increased risk of developing a range of physical and psychological difficulties. Secondly, the services they could benefit from can only be fully accessed through a relational capacity that their injury has left them without. Thirdly, it is not unusual that the ways in which their relational injuries manifest do not evoke care, concern or compassion in those trying to deliver care. Fourthly, the longer they are without care, the worse their care needs typically get, and the less likely they become to seek anything that might address those needs in a progressively worsening cycle.
I would argue that we need to recognise that there are some injuries that while not readily visible or discernible on any scan or x-ray, are nevertheless present and are of such a severity as to be chronically life limiting. We need to recognise that our healthcare systems, while laudable in many areas of adaptation and accommodation for the limitations people experience by virtue of other injuries, typically make little or no allowance for those who have been most psychologically harmed in their earliest experiences of care, are in the greatest need of health, and who are some of the least able to access it.
Dr Adam Burley is a Consultant Clinical Psychologist. He has written more about the ‘invisible relationship’ here.