The hell of finding myself in a hospital bed
My life and career had been blessed. I was appointed a Senior Lecturer in 1987 and a Professor in 1998; in 2002, I was almost at the peak of my career. I had been an adviser to the World Health Organisation twice, I was Sub-Dean for examinations of my primary Royal College and was also an elected Fellow on Council, and had just been appointed to sit on a United Nations committee. My long-term partner had just proposed marriage to me. We had a good year, attending operas and dinners, had travelled widely and enjoyed tennis and sailing together. Then everything changed so very suddenly. I felt a lump in my right breast and at 11.30am on Wednesday November 27 2002 I was told that I had breast cancer: a five-centimetre stage 2 “ductal carcinoma”, which was invasive. I now began my second career – as an NHS patient. Little did I know that my medical CV would soon be almost as long as my academic CV.
My cancer treatment was arduous. I had eight chemotherapy sessions, lasting five months; I then had a partial mastectomy and radical lymph node clearance, and then six weeks of daily radiotherapy. My second and final oncologist advised me to have two “extra chemos”; despite the side effects – septicaemia, continuous nausea, plus vomiting blood because of the pressure on the veins in the throat, undiagnosed restless feet and legs and, naturally, complete hair loss – I agreed. The desire to live and get better was huge.
All this meant that I passed through numerous hands and numerous shifts of staff. Most of the professional staff and particularly the medical teams in the NHS are great: the cancer staff seem particularly caring, as they spend much time talking with, listening to and really caring for their patients.
Since cancer I have been diagnosed as having a “syndrome” – too many dark spots on the skin, which has an association with breast cancer; I have had no fewer than 20 biopsies (thank heaven – none malignant); then I had a total hip replacement (THR); and I also attend various other clinics including the asthma clinic, the lipid clinic (for a blood disorder) and a complementary cancer clinic.
I have, on the whole, been treated very well, especially by the doctors looking after me – and the cynic would say, “Well, of course, she is a doctor”. But I have not always been treated so satisfactorily. I began my cancer treatment with chemotherapy at a London teaching hospital. The side effects were ghastly, the worst of which was the septicaemia. I had to be admitted to hospital in a blue-light ambulance and do not remember two full days: I am lucky to be alive.
Apart from the consultant surgeon, who I thought was really super, the hospital staff were not very kind to me. A junior doctor asked me if I knew “my diagnosis and prognosis” and the oncology consultant appeared off-hand and failed to turn up to an appointment. I subsequently left the hospital, and my GP then transferred me to “my” hospital, where I completed the rest of my treatment and at which I am still an out-patient.
When I felt better in myself and stronger, I wrote to the CEO of the first hospital and received a complete white-wash of a reply. I felt aggrieved, but was too ill to “fight the system”. At my hospital, the doctors and consultants have been fabulous to me, but the same cannot be said for all of the professional groups there.
For instance, nearly all the nurses on the ward when I had the hip replacement a couple of years ago adopted “assumed intimacy”, calling me by my first name when not invited to do so. In fact, one of my visitors asked the nurses where Prof Robertson was – only to be assured that there was no one there by that name on the ward. I was only known as “Mary in bed 10”.
I have always called my adult patients Mr Smith or Mrs Jones; I even ask the youngsters and children what I should call them. This is, I discovered, not always the case in the NHS, particularly in some disciplines. Many a time, while having an X-ray or MRI, I have been called “Mary”. Once, when I did not reply to that, the radiographer asked “Aren’t you Mary?”. “No,” I replied. “To you I am Professor Robertson – I am your patient, not your friend.” Another time in the same department I complained and was told that using first names was their policy – this was despite the fact that the radiographer had not introduced herself, nor was she wearing a name badge.
While some of the nurses are really outstanding (my specialist nurses for breast cancer, lymphoedema and dermatology), others are far from good. Again, when I had my hip replacement, some of the nurses, in particular some Health Care Assistants (HCAs), let me and other patients down. For example, I vomited and was left for half an hour before being cleaned. Once when I used the bed-pan I was left alone and one of my visitors (who is a doctor and physiotherapist) actually took it upon herself to take the bed-pan away. I was left without a wash for two days.
There was also a shortage of nursing staff, which had repercussions for patients. An HCA challenged an 85-year-old woman as to why she could not walk to the lavatory, and everyone could hear her, which was unacceptable. A second HCA told the same 85-year-old – when the patient said she “was bursting and wanted to go to the toilet and would end up wetting her bed” – “That doesn’t matter”.
All of this was in sharp contrast to the female night staff nurse who virtually manned the ward herself, put up and changed my IV drip for a blood transfusion, gave all of us our night medications, changed my bed-pan and once, when it had spilled over on to the sheets, even made my bed. She greeted every patient when she came on duty with a warm smile. Yes, thank heavens, there are still the real “Florence Nightingales” like her, who actually want to be nurses, but then there are others who appear merely to want a job, and a job in the NHS is secure – it is quite difficult to be fired.
I can see now, as a patient and a doctor, that, in contrast to 30 years ago in the NHS, managers have much more control. Many of my doctors (with me as the patient) and also my colleagues (with me as a doctor) are frustrated, and morale is lower than it used to be. In the days when I started in the NHS, matrons in blue uniforms and starchy white hats ruled the roost, and consultants were held “on high”: everyone worked hard and loved it. People called the professor “Professor”. Now it seems that Professors and doctors are being side-lined: a friend of mine is a senior surgeon and has a midwife as boss and line manager.
There is now no dedicated doctors’ canteen in many hospitals, and complaining about this is not me being elitist – much work used to be done over lunch, obtaining an opinion on a difficult problem. Doctors, in the main, no longer have their own offices either, so many of them have to dictate patients’ letters within hearing of other folk who have nothing to do with the patient.
With all this new management come new rules and conditions, not really made by senior doctors. And then, of course, we also have the European working time rules. When I had my hip operation, the junior doctor (house-man or intern) was rushed off her feet. She was pleasant and, I am sure, competent. But all I saw was her running around like a headless chicken, greeting patients briefly, checking if they had a variety of pains, whether they had had a “pee or poo”, whether they had walked, whether or not they were in pain, whether or not they had had their bloods taken.
“No” was my answer to all: she looked aghast at the last – “Oh, that means that I will have to come and take it”. The rest of the time she seemed to be writing up the drug/medication charts or filling in forms: surely that brought little job satisfaction. I remember as a house-man working endlessly but doing everything and being a proper doctor involved in my patients’ care. I undertook draining of pleural effusions (taking water off the lung), reducing ascities (similar, but taking excess fluid off the abdomen), doing endless lumbar punctures, initiating emergency treatment and so on. We all also made time to talk to and listen to our patients. Even now, I still remember some of my patients’ names from those days, nearly 40 years ago.
A new language has insidiously crept into the medical world. Patients are increasingly called “clients”. I am not a “client” when I am ill – I am a patient and want to be treated by doctors and nurses. I am a customer in a shop and a client in a legal firm. “Breach” and “targets” are also very important new “medical” words. A breach means that a patient misses being allocated an appointment within a specified time, and the target is that specified time (heaven forbid – heads will roll and/or salaries drop).
I have had this happen to me as a patient, illustrating just how crazy it is. My previous GP referred me for a community para-medical appointment: I was offered an appointment within three days (the target) at a centre many miles away – necessitating two bus rides. I declined and asked for one at a clinic within easy walking distance from my home. No – for that appointment and clinic I would have to telephone again next day, or else I would “breach the community practice target”. When I did phone, all appointments were full, and so I was given a place on a waiting list for an appointment within six weeks. I wrote to the manager, pointing out the absurdity, and was given the appointment within three days: but imagine if I could not type and was not articulate – I might still be on the waiting list!
I took early retirement because of my cancer and work one day a week pro bono, so I am not bothered by many of the changes – for example, I almost never go to management meetings. But with the NHS changing so much, many of my academic and NHS colleagues are now taking early retirement, and continuing with academic sessions; that is what doctors love – their work.
Recently, I had the privilege of observing the entire process of deep brain stimulation (DBS; functional neurosurgery – like a “pacemaker” to the brain) for a patient with a movement disorder. The whole day was a pleasure. “Happy hierarchy” ruled and almost all called me and my senior colleague “Prof”. Everyone got on with their jobs and there was a huge esprit de corps.
DBS is probably the most amazing medical development in my 39-year career as a doctor. The day brought out everything that is fabulous about medicine – apart from the fact that in a target-besotted NHS, the operating theatre lacked a pillow for the patient and an appropriate trolley to take her to theatre, so the sister and registrar had to go searching for them.
The NHS is an absolute treasure – my thought is that we should not abuse it. This goes for both staff and patients. NHS staff should act professionally and courteously all of the time and so should patients, by turning up for their appointments (much NHS time and money is lost through missed appointments). All of this makes the NHS, according to some, an inefficient system. Let us at least try to cure that. Long live the weird and wonderful system that is the NHS.
Mary Robertson is Emeritus Professor of Neuropsychiatry and Visiting Professor and Honorary Consultant Neuropsychiatrist at two London teaching hospitals and universities.
