chronic illness – Patching the Soul

When I was a doctor I was a keeper of stories- and I don’t mean just the person who entered those stories into casenotes. As Danielle Ofri says in her memoir of life at Bellevue Hospital in New York, Singular Intimacies, I often felt the weight of balancing so many patients’ stories within me. I remembered what people told me, the expressions on their faces, their pain and anguish, the events of their lives, and the impact that what had happened to them not only had on the person telling their story to me- but how it affected me- the listener.

From the general practitioners, psychologists and psychiatrists who have seen me through episodes of depression to the nephrologist I visit every year for my kidney disease there are a small number of people who know my story of ill health. I used to be able to count the ones who have been important on one hand but as I grow older it now takes two. There aren’t very many because most saw me for many years, through periods when I was very unwell, and much less frequently, in times of good health too. We knew each other. It was such a relief that I didn’t have to repeat my story each time we met. When my mood deteriorated, they remembered how I could be, what I had achieved in my life, and helped me to distinguish the person that I might really become from the one beaten down by the overwhelming impact of depression and anxiety. Over time, I was able to develop sufficient trust in each one to allow them to help me. I believed that they cared what happened to me, and the hope that they held for me each time I became unwell acted as a lantern to light the way on the road to recovery. They have been the keepers of my story.

Seeing the same health professional over time, something we call relational continuity of care, really matters. It is particularly important in primary care, where person-focused rather than disease focused care is far preferable for people with multimorbidity- older people like me with sometimes several different conditions. A recent systematic review led by Professor Sir Denis Pereira Gray, a veteran advocate of continuity of care who consulted in the same house as both his father and grandfather, has shown that it saves lives. Being able to see the same doctor really is a matter of life and death. Yet our policymakers have prioritised fast access over continuity so that it can now be increasingly difficult to see the same GP.

Continuity is also crucial in mental health care. When, at the recent Royal College of Psychiatrists International Congress, a mother told an audience the story of how her teenaged son had seen nine difference consultant psychiatrists in one year, many of us were shocked. How could such fragmentation of care have been allowed to come about in our mental health care system? How could the impact be anything less than highly detrimental? Yet it is clear from the reaction of so many people with whom I’ve discussed this in the last month that this story is so far from unusual. Nevertheless there is evidence that continuity of care is associated with better quality of life for people with severe mental illness. Another more recent study that compared mental health care systems based on continuity or specialisation pointed towards reduced length and number of hospitalisations, and faster or more flexible transitions between services in continuity systems. And both patients and staff (unsurprisingly) preferred continuity models.

This is not however to say that the old ‘sectorised’ model of the past, with one consultant overseeing a community, was without problems. Sectors were often too large, with one consultant perpetually overstretched, and there was limited opportunity for choice when the relationship between doctor and patient broke down, or a sector consultant had particularly strong views about certain diagnoses, or treatments. When I arrived to take up my first consultant post in general adult psychiatry, I found to my horror a ‘blacklist’ of patients my predecessor had refused to see or admit to his unit- most of whom I eventually managed to engage and help. I saw many for second opinions from within and even outside our organisation. The NHS was more flexible then and extensive paperwork was not required. Later, working side by side with a colleague across one sector, we were able to provide our population with more choice, and between us a range of different expertise and interests.

Now service users and patients are shuttled from one functional team to another – from community to crisis team, to in-patients, to recovery, back to their GP and then back again around the circle- each with a different consultant. Add to that the problems with staff retention in both mental health and primary care and the savage cuts to services and I fear we may have a generation of doctors who no longer know both the pleasure, and responsibility, of the keeping of stories. Instead they have become, like those who saw me in hospital last year, the anonymous faces who struggle to piece enough information together to get through the day safely, relying even more on patients, if they are able, to fill in the necessary gaps. We seem to have forgotten that it is the power of the relationships that are forged between us – professionals and patients- that matter, not the number of ‘contacts’ we have notched up; and these sustain not only our quality of life- but life itself. For me as a doctor it was the power of those stories and my ability over time to make a difference in how they ended that fulfilled me, and sometimes prevented me from moving on even when other things in a job were getting difficult. How much is lack of continuity, and the increasing sense of anomie accompanying it, not only caused by failure to retain staff, but fuelling it?

And, most of all, we patients feel increasingly unsafe too.

Anonymous, anxious and wary as we wonder: Who is the keeper of my story now?

I had been essentially bed bound for 5 days, catheterized, cannulated and weak as a new born, in a ward for the elderly which I will call ‘ward A’, when the first senior nurse I had spied came into the 4 bedded room in which I lay. She chatted and giggled for ten minutes or so with the nursing assistants, who all stopped what they had been doing. I couldn’t hear much of what was said as I wasn’t wearing my hearing aid, but I picked up the gist that it wasn’t work related. Then, picking up her paperwork, and after a cursory glance through each of us patients as though we were invisible, the senior nurse departed again.

Five days earlier the highly professional doctors and nurses in the Emergency Department and medical assessment unit saved my life. I was diagnosed with sepsis secondary to pyelonephritis, given iv fluids and antibiotics and admitted initially to the medical assessment unit. There I was cared for by a pleasant final year nursing student, who told me her name and explained that I would be transferred forthwith to another ward for on-going care. Sadly, that was when things took a downhill turn.

If I hadn’t had anything to compare it with (see below), I might have thought that the care I received in ward A was the best on offer. On arrival I was left in a metal wheelchair in a corridor for 2 hours, with nowhere to rest my head other than a table-top and the body of my husband standing next to me. I’m 61 now, but I was by far the youngest in ward A, and I wondered if that played a part in some of the nurses apparent perception that I didn’t need any help- even though I was acutely ill, apparently rambling at times, and receiving intravenous antibiotics for the antibiotic resistant e-coli bouncing around my circulatory system that I had acquired in another hospital after a routine cystoscopy. Each morning I was expected by the night staff to get out of bed and sit in a chair with no pillow for 2 hours even though I was septicaemic and unable to support my own weight, while I waited for the day staff, a couple of whom chewed gum all the time, to ‘come and do the beds’. After 2 days I rebelled and crawled back onto the bare mattress but they didn’t come any sooner and left me until last. While lying there I heard the lady in the next bed who was barely conscious referred to as a ‘bed-blocker’. Then I refused to get up altogether at 6.30 am and my increasingly stained sheets were left unchanged for 3 days while the dressing on one of my bilateral cannulas, left in for almost a week, began to discolour and smell.

Neither the nurses nor the ever-changing doctors who visited each day introduced themselves and I couldn’t read their name badges as I didn’t have my glasses with me. I gradually learned which nurses to ask if I wanted something, and which ones would ignore me or get inpatient if my request didn’t fit with their all-important routine. Two of the staff nurses and one of the untrained nurses showed me considerable kindness- they told me that they had been hospital in-patients too and knew how important it was to be provided with information. Another left me for 2 hours in acute pain. Three days into treatment I was mistakenly given my medication orally rather than IV, but even this didn’t warrant a conversation with the lead nurse. When I made my first unsteady foray out of the room and down the corridor, fortunately without falling, I couldn’t resist a cynical snort when I saw a poster all about ward A’s dedication to providing high quality patient centered care.

Halfway through my stay, as I began to recover I was transferred to another ward, which I will call ‘B’. I was immediately greeted by the senior nurse who expressed horror at the sight of the tube hanging from my arm and insisted on its replacement. This was a surgical ward, and it was quieter, but only at first, and it soon filled up completely with post-operative patients and quite a few people as disabled as those I had shared a room with before. Everyone there introduced themselves with ‘Hello my name is’. I became visible again- as a person who was sick and needed care and assistance. Each day my bed was remade and I was able to get back into it if I needed, as I was still utterly exhausted. This was the NHS that I recognized but it felt as though I had been moved to a different hospital – not just to another floor. The mattress was even more comfortable (this was not a halo effect- my lower back no longer required a supporting pillow!). I was assured that beds were the same, yet it seemed to me that the people most at risk of pressure sores were sleeping on the oldest and most worn in the hospital. I also realised that the floor of ward B, unlike that in ward A, which had caked on dirt by the side of my bed, was actually clean.

I hate to criticize the NHS. I spent my life working in it, and I do believe it is the best health care system in the world- but I don’t think that means we should assume that all of its failings are related to lack of money and understaffing. I’ve worked in and researched health care long enough to know that isn’t true. From treating NHS employees with mental health problems who were bullied or excluded by managers and staff cliques, I know how much culture and management play a part in how effectively a unit operates, and how leadership style is crucial. That I only once saw a senior nurse in my time on ward A- and I and my fellow patients were invisible to her, was, I believe a contributing factor in why ward A was failing to provide the care it aspired to. In ward B the senior nurses were regularly seen around the unit and were approachable to patients and relatives.

After 2 weeks, I was discharged home where I am still slowly recovering. My bruises are disappearing and my desire to do something to change things has returned in force. I’m not good at being invisible- it’s a life long problem. I will be writing to the Chief Executive of the Hospital Trust … and also suggesting that if any of the Board are in doubt about the state of the beds in ward A they should be invited to spend a night (or two) in them.