The invisible patients

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.

The problem with resilience

‘Resilience’ is one of those words its hard to avoid at the moment. No one seems to be quite sure what it means, but one suggestion has been that it refers to a person’s ability to maintain or regain a state of mental health in the face of significant adversity or death; in which case it is a quality in which I am undoubtedly lacking. I am very sensitive to the ups and downs of life especially loss. I get anxious and depressed; I’ve had periods off work. I may have successfully survived a lifetime of work as a psychiatrist and an academic, but I’ve also had to use mental health services to keep afloat. Life in the NHS is challenging and I’ve not got through my career without some serious wounds to show for it.

Before the word ‘resilience’ achieved common usage, and its current prominent space on the buzz word bingo board of healthcare, I understood it broadly to be inversely related to the degree of vulnerability conferred by a combination of genetic heritage (see Goldberg & Goodyer)- which influences our temperament, personality and susceptibility to some types of mental health problems, early life experiences and social learning in childhood. If a group of people are exposed to the same degree and type of stresses most will cope, they will demonstrate resilience, but a minority will not. We all have differing degrees of it. Some will develop common mental health problems like depression and anxiety in response to traumatic events, and others less common ones, such as psychosis, but many others will get through relatively unscathed.

The General Medical Council (GMC) with whom I am still registered, although I no longer practice psychiatry, has recently decided that the current generation of doctors is less resilient than those in the past and students need to undergo resilience training in order to be tough enough for the job. I have a number of problems with this view:

  • As an excellent review of the topic by Balme and her colleagues in BMJ Careers recently stated ‘there are no consistent definitions, no standardized, valid or reliable measurements; and no robust studies into what resilience is, what the predictors of resilience are, and whether resilience is related to better patient care.’
  • So if you intend to screen for it please check out this first. If I were starting medical school now (and I still dream I haven’t yet passed my finals) I would want to know, as will others, exactly what it is I am lacking in (given that I tend to get depressed I will likely feel guilty and even more insecure) and whether being without it is going to be of harm to anyone but myself. We don’t screen out people with diabetes from being health professionals. Why should we even consider doing that with people who might be vulnerable to depression.
  • Because in an increasingly hostile working environment the reality is health care professionals are going to experience more mental health problems. They are human beings like the rest of us, although they are not encouraged to admit they need help, for fear of appearing weak. The culture is tough enough already.
  • Please don’t dress up this quality called ‘resilience’ as something for which they must take full responsibility (I have a problem because I lack resilience) rather than the NHS (I’m not very well because I do not work in a supportive and caring workplace). As Balme et al. point out resilience is always contextual – it’s a complex interplay between the person and their environment.
  • Please don’t assume that attending a few short workshops would increase my resilience much either. The evidence for the effectiveness of resilience training is patchy at best, and though there is a suggestion of some positive outcomes, these are mainly from self-report in studies lacking rigorous methodology. It might be more effective to address these problems I have in relating to the world and coping with stress much earlier in life before any thought of being a health professional is even a twinkle on the horizon.
  • What I would need is help to identify coping strategies like problem-solving. There is evidence that this works for people with depression, and those who self-harm in response to life stresses. I wish someone had taught this to me in childhood, it might have helped me earlier. I would need things I can rehearse to put into action at times when life gets tough. But I’m also going to need to be encouraged not feel too ashamed to ask for support and how to identify I might need it earlier rather than later, as so many health professionals who have consulted me have been unable to do. Fast and confidential access to help and support too, not having no choice but to consult a service that I work in, which happens to so many people now in mental health services in the UK.
  • And finally, please don’t assume that just because I’m not as tough as the GMC would perhaps like me to be, I would not be a good doctor. Since my book was published a month ago, I’ve heard from medical students who have feared for their future because they have experienced mental health problems at medical school, worried that they will not be strong enough to cope. Yet these very young people, who have experienced what its like to be a patient can bring a very special dimension to their work. Like me, they know what its like to be on the other side.

We all differ in our ability to deal with traumatic events and the stress of work, yet within that spectrum of abilities lies the potential for us to learn to listen, support and care for each other: as friends, colleagues, some managers and a insightful and proactive occupational health service did for me; supporting me through my sometimes difficult career.

My memoir about experiencing depression during my career in psychiatry is out now: The Other Side of Silence: A Psychiatrist’s Memoir of Depression ‘published by Summersdale.

A life in the NHS

I arrived in this world seven years after the birth of the National Health Service. My life has been framed by it. I was born in a cottage hospital and regularly weighed by the nurse at the district clinic. As I grew I was taken to the General Practitioner who for many years had a surgery attached to the side of his home. I don’t remember much about those visits other than on one occasion my mother took me along expecting the GP to advise her (and me) what should be a reasonable bedtime. I know she was disappointed by his response.
‘She’ll sleep when she’s tired.’
An American psychiatrist I met many years later suggested I may have had ‘Oppositional Defiant Disorder.’ I remember retorting, ‘No I’ve just always been difficult.’ My mother certainly seemed to think so anyway.
When I left school, I studied medicine, and qualified as a doctor and then as a psychiatrist, working in the NHS in Scotland and the North of England for over 30 years. I was, and still am, proud to have been part of the massive social experiment that began the day Aneurin Bevan was symbolically handed a large bunch of keys by the matron of Park Hospital in Davyhulme.

I’ve seen firsthand what life is like in a country where the market governs healthcare. Several years ago I spent a few months studying the American health system as a Harkness Fellow in healthcare policy. A few memories from my time travelling between clinics in Washington State remain with me, indelibly burned into my memory.

• The young woman with poorly controlled asthma stifling her tears because she had to say goodbye to her doctor even though she was not moving away from town. She had changed jobs and her new employers’ insurance system contracted with a different ‘provider’.

• The middle-aged man on the telephone in the waiting room pleading with his friend down the line. ‘Can you lend me some money…I can’t afford to pay for my insulin.’

• The young man in paint splashed overalls who lay flat on the front seat of the bus writhing in agony, getting himself to the Emergency Room by public transport; probably to avoid having to pay for an ambulance he could not afford.

• The general practitioner who told me how she struggled to help a young woman in her clinic who was acutely psychotic. Her basic state medical insurance didn’t cover specialist mental health care, so the visiting psychiatrist, who was in the next office, was unwilling to either see her or advise.

• The nephrologist who specialized in treating African Americans in a southern state with a high prevalence of diabetic renal disease who told me that he could personally ensure his low income patients without health insurance got the care they needed through his academic interest in them, but others would not. He seemed curiously accepting of the status quo. ‘That’s how it is here.’

Don’t get me wrong. The NHS is a complex many-headed beast, fraught with problems. I have not only benefited from it, but I have suffered from it, and seen others do so too. I have struggled with and been bullied by bureaucratic and hostile management and survived an attempt to remove me with some serious consequences for my mental health. I’ve also known visionary managers some of whom became friends. But I’ve also seen the NHS try and fail to entirely abolish traces of the mentality of the huge county asylums it inherited in 1948. I’ve worked with many extraordinarily compassionate and caring practitioners, yet I still hear service users relate examples of attitudes and behaviour towards them, which are all too familiar from my early days as a consultant in a decaying mental hospital.

The gap between physical and mental healthcare, which was wide even when the new district general hospital psychiatric units were attached to the rest of the hospital by long corridors, grew to a chasm with the separation into acute and mental healthcare trusts. Despite evidence that investment in mental health care might have significant impact on the spiraling costs of physical healthcare, the concept of ‘parity’ still seems something to which little more than lip service is paid. Mental health care has been cut by a greater percentage in funding than any other area. And now, with the decline in numbers of GPs and funding of primary care, where 90% of mental health care is provided, we should not be surprised that it is harder than ever for people to get the help they need when they are in acute distress.

Throughout my adult life I’ve been in receipt of mental health care, most of it provided by NHS staff, who went the extra mile even though I wasn’t always easy to help. I’m still and always have been contrary. No one ever suggested it wasn’t in his or her contract to treat me but the goodwill that used to ensure mental health professionals didn’t have to receive treatment in the places where they work has largely disappeared. Rules reminiscent of what I encountered in my times in the USA are becoming increasingly used to determine who gets help.
‘We’re not commissioned to provide care for people with (you name it- Aspergers, Autism, Personality Disorder, Analgaesic abuse….the list grows).’

And now I’m getting older, and I have recently been diagnosed with kidney disease, I know there is a very real possibility I will one day be as dependent (a sorely unfashionable word I know) on the NHS as the day I was born, only this time for dialysis. I’m worried about whether the NHS will exist when I really need it to save my life, or whether I will struggle, as the patients I saw in the USA, to obtain care from an uncaring system.

Last time I visited Park Hospital, now known as Trafford General Hospital, the black and white pictures of the great day the NHS was founded were still on the walls of a corridor in an old part of the building, but clearly forgotten and sorely neglected. Their state seemed to me to represent the ways in which successive governments have tried to forget, suppress or actively derail Bevan’s extraordinary achievement. For all of our sakes let us not sleep walk compliantly into a future when it will suddenly not be there for any of us to depend upon.

In order to do this we must never stop being ‘difficult’. I prefer to call it ‘creatively contrary.’