Last year I spent 69 nights in NHS beds – 48 in hospital and 21 in a rehabilitation centre funded by the NHS. Plenty of time for reflection but, although I may well owe my life to the NHS, I did not give much thought to the structure or vision that I thought the organisation needed. Rather I turned an ethnographic eye on what I was participating in.
It all happened very suddenly. One Sunday, last July, we went for a long walk by the sea before I purchased a print from a gallery with a tea room. Forty-eight hours later, I was writhing around with abdominal pains in the worst agony I have ever experienced. I called 111; they listened to what I had to say and within minutes two paramedics were pumping morphine into me. It didn’t have the desired effect and they decided I needed to go to A&E urgently for an assessment.
This was the point when I knew that I wanted to nominate someone as my next of kin. I am a single man who lives a long way from my biological family. I didn’t really want to hand over urgent major decisions to a group of strangers. I wanted to have an advocate who knew me. I have known DS for over 40 years; we live in the same block of flats and see each other every day. He is an experienced trade unionist and is not intimidated easily by people in authority. The role of next of kin is legally complicated and sometimes contested; in fact, there was no problem here and everyone treated him with respect. Someone who knew me well was rooting for me.
I was compos mentis enough to agree to an emergency operation for a strangulated hernia. Nobody mentioned that the risk of mortality is seven times greater when these operations are done on an emergency basis rather than electively. But what could I have done with the information if they had? For the next few days I was in some kind of drug-induced parallel universe. I managed to lose 10 kilos of weight in less than a week. My grandmother’s wedding ring which I have worn for 30 years kept falling off my little finger in a way that it never had done before.
I may well have become a difficult patient to manage; I was pulling cannulas out of my arm; at one point security was summoned to get me to go to bed. This is what I am told; I have no memory of this time. DS and another friend, SC, spent a lot of time by my bedside but my side of the conversation was limited to the occasional grunt. My eyes remained closed for much of the time. I could have died. I certainly felt very near it. Meanwhile DS was fretting and finding it difficult to get anyone to take seriously his insights into my condition or my life history.
DS finally made a connection with a senior nurse who paid attention to his fretting. Shortly afterwards, I was diagnosed with peritonitis. I am glad that no one conveyed that diagnosis to me because I had this notion that people normally died of peritonitis. That may once have been the case but in 2016 surgery was an option. The effects of the morphine changed and having been morose I allowed my imagination to go into overdrive. I was convinced I was flying to places like Iceland and nobody seemed interested that I had got the last flight out of Reykjavik. Because of my confused state, a special procedure for consent to further surgery was invoked that did not require my verbal agreement. A second general anaesthetic six days after the previous one really was a big deal.
My other closest friend, NS, came from Spain and read extracts from the short stories of Meagan Delahunt. The words made no sense but the sound took me to a place that felt comforting. NS also took it upon himself on his return to Spain to update people through Facebook about my condition and that proved a really useful way to communicate with people who did not live near me.
Seventeen days after the second operation, I was shipped off to a rehabilitation centre where I was almost the only male resident out of a total of 20. I spent a lot of time listening to Radio 4 on my transistor; nursing care was only available for 12 hours a day; during the night you could either dial 111 or make use of the services of the friendly night staff. Their commitment and imagination went well beyond the requirements that might have been expected of someone earning the minimum wage. Some of their dressings were positively Heath Robinson but they did enable me to get a good night’s sleep.
The return home was not the happy ending I had been hoping for. I found that it was easy to become dehydrated; on occasions, I lost my balance and fell over. It was a time spent in the shadows. Part of me was preparing for the end; I was disposing of things in the way that I remember my mother doing shortly before she died. Seventy days after returning home, I was re-admitted to hospital.
Once in hospital, I seemed to be on a constant drip to restore my levels of salt and magnesium. I didn’t know how the situation was going to resolve itself. Then I was offered the possibility of more surgery; initially I had a very negative response. After two forays with surgery already that summer, I was really averse to any more general anaesthetic. I was aware that I was not the only septuagenarian whose body was more of a covert masterpiece of medical engineering than anything that could be described as ‘natural’. But I did have to think about it; and I talked about it with friends (particularly DS, NS, SC and LF) and a couple of friendly nurses. The prospects for my quality of life seemed miserable. What did I have to lose? Eventually, I agreed to let them make some more cuts to my intestine. Of course, it was a risk.
The surgery took place on 14 December. I had no memory of being in the recovery suite before and when I came round I asked the nurse who was taking care of me if I was in Dundee. She was a nice girl from Malaga and I am not sure that she really understood my question but she was able to assure me that I was in the same city as I had been before I went under the anaesthetic. I continued plaguing her with questions because it felt like there was a fog obscuring my vision. DS was in Derbyshire, visiting his elderly father, but I wanted the reassurance of speaking to him. She rang his mobile and found him having a lunch break in Clay Cross churchyard; he was able to assure her that my querulous behaviour was fairly normal post-operatively and that set her mind at rest. He and I did not have much that was concrete to say to each other but the sound of his voice helped me to clear the fog and to bring me back into the real world.
This is not an article about the crisis in the NHS. I didn’t even attempt a back of the envelope calculation of how much my 69-night stay on NHS premises might have cost me in a less egalitarian scheme. But I do have things to say about the staff who took care of me. They came from a variety of backgrounds – all over the EU and poorer parts of South Asia, as well as Sussex and other parts of the UK. They worked hard and during the night and they also had to engage with tangential mental health problems on the part of many of their patients. A couple of them told me that they were afraid that, as a result of Brexit, they would be shipped back to their countries of origin. I don’t think they found my view that they will be allowed to stay, but with a second-class status, very helpful.
Certainly, this hospital without EU staff would be a forlorn place. I felt that communication between different groups of staff could be improved – or even valued. There were too many silos in the system and they all seemed to have their own internal hierarchies of deference. But the communication between me and individual members of staff was beyond criticism. Staff did want to do well. That was also true of the ancillary staff who served the tea or swept under the beds. On the day of my departure, two such staff came looking for me in the room where I was waiting for the wheelchair to take me to the room where I would wait for the ambulance. As the woman who served tea said to me: ‘When people are ill, they need people to be friendly to them.’ She was proud to be part of a service that cared.
Usually when patients are allowed to go home, it takes ages to organise the details. There is something approaching a ritual dimension to it. Wives or brothers have to be phoned to see if they remember promising to pick the patients up; then there are frequently bad tempered follow-up calls to explain the layout of the car park. The pharmacists have to bring medication and that has to be checked by two other members of staff; it can all take hours. So, I was rather surprised to be asked to vacate my bed in 10 minutes. It seems that there was a man who had been waiting in A&E for a long time and my bed was the only male bed left in the hospital. There was no slack at all; no time to disinfect the bed thoroughly. But someone’s sense of guilt about the haste surrounding my departure ensured that my transport home was arranged quickly.
It’s difficult to know how to finish this article. There’s neither a happy ending nor a tragic finale. I am face to face with a different – but manageable – post-operative reality. I remembered how David Bowie had helped me to make sense of lots of the ch-ch-changes in my life in 1971 and so I turned to him again. In his 2015 video, ‘Where are we now?’, the questions he asked about how to make sense of his life struck a chord with me. ‘Where are we now? The moment you know you know you know…Fingers are crossed just in case.’
It would be hard to explain just what it is that I do know, but I am aware that I am more curious about the spiritual dimensions of my knowledge levels than ever before. Perhaps because I have less faith in my body than I once had. I have no idea where any spiritual path might take me – or whether I even want to follow it – but I am clear that after four months of the darkest times, my knowledge of myself, my limitations and of the perils and the pleasures of the world around me, is much more sure and grounded than ever it was before. Knowledge alone is not enough but it is a starting point that enables me to try to live meaningfully. One day at a time – what else can you do?
By Bob Cant | 21 June 2017