In the first part of ‘How doctors killed my mother’,  Dr. Vernon Coleman describes a heartbreaking experience of his mother undergoing a misdiagnosis and mistreatment during her illness.

Initially admitted for walking difficulty, she was later diagnosed with terminal cancer despite evidence to the contrary. Subsequent negligence in reporting symptoms and dismissing alternative diagnoses caused further suffering. Dr. Coleman’s wife’s research suggested normal pressure hydrocephalus, a diagnosis the hospital staff refused to investigate.

By Dr. Vernon Coleman

The following essay is taken from my book entitled `How and Why Doctors Kill More People than Cancer’.

Part One

In October 2004 my mother had difficulty in walking. When she was first admitted to Royal Devon and Exeter hospital in Exeter, she was thought to need extensive physiotherapy to help her walk again. She was mentally alert. In November 2004, after a rapid deterioration, it was decided that my mother was suffering from terminal cancer with metastases. She was not considered healthy enough for palliative radiotherapy. She was described, by her consultant oncologist, as “frail, confused, bedbound and dependent.” She had to be catheterised because she was incontinent. The idea of rehabilitation was abandoned because of her alleged terminal cancer. A neurologist who assessed her mental state reported that my mother did not know where she was and had failed to recognise the doctor. She was given the usual simple mental test (date of birth and so on) and scored 0 out of 10. My father was telephoned at home and told that my mother was terminally ill with cancer and that there were metastatic deposits in her spine, lung and possibly liver. It was thought that her mental condition could be caused by secondaries in her brain. No one knew what sort of cancer she was suffering from or where the primary was situated. My father was telephoned and told that a breast cancer she had many years earlier, and from which she had officially recovered, had suddenly recurred, though there was absolutely no evidence for this theory. (Following an operation to remove a breast, she had refused chemotherapy and radiotherapy after asking to see evidence that the proposed treatment might be suitable for a woman of her age. Although she was over 70 at the time she was only given evidence showing that the suggested treatment might be suitable for premenopausal women. My mother, who had left school at 14, could see at a glance that this wasn’t of much relevance to her. She decided that “it’s what we do” didn’t count as a scientific explanation and so she and my father decided that she’d pass on those, thank you very much for offering. She made a complete recovery but now, years later, as she lay in her hospital bed various members of staff blamed the cancer. My father was devastated. The diagnosis caused him untold grief, soul-searching and guilt. It subsequently turned out that the people who told him this were quite wrong. My mother’s illness and her death had absolutely nothing to do with the breast cancer.)

I telephoned the cancer specialist. She told me that my mother either had cancer of the breast or the lung with secondaries and was too weak for treatment. “That’s the nature of the beast,” she said. She told me that there was no hope but did agree that the registrar’s action in telephoning my father when he was at home alone was barbaric.

On Sunday 21st November we noticed that my mother’s urine bag was red. There was clearly blood in her urine. A nurse had changed the catheter bag several times without bothering to report to anyone that the urine in the bag was red with blood. Or perhaps they hadn’t noticed. I reported the blood and a doctor put my mother on amoxicillin for a urinary infection. After the blood appeared in the urine the cancer specialist told me that my mother had secondaries in her kidneys. By the 30th of November, the urine was clear and the bag was no longer red. The diagnosis of cancer secondaries in the kidneys was never withdrawn, though it too was wrong.

My mother stayed in the Exeter hospital, which is a teaching hospital, for the next few months. Numerous consultants saw her and decided that there was nothing to be done. Her symptoms now seemed to defy diagnosis. She managed to get out of bed occasionally but was unsteady on her feet. And she had developed a rather strange way of walking with her feet wide apart.

My wife, Antoinette, who has no medical training, put my mother’s symptoms into an Internet search engine. She came up with several differential diagnoses. From the short list she produced we both agreed that normal pressure hydrocephalus was the most likely diagnosis. I’d never heard of it but the disease fitted my mother’s symptoms perfectly.

She had an unusual wide-legged walk. She had a tendency to fall. And she had urinary incontinence. She was also showing signs of dementia. These are precisely the symptoms shown by patients with normal pressure hydrocephalus. Precisely.

Normal pressure hydrocephalus is not something GPs see very much if ever. But it is the sort of thing teaching hospital neurologists really should know about. I had never seen a patient with it. The doctors looking after my mother listened politely to my suggestion that they consider normal pressure hydrocephalus but immediately dismissed it and stuck with their neoplastic madness. There was never a shred of evidence in support of that diagnosis.

At one point during her stay in the Exeter hospital, my mother improved noticeably after she had a diagnostic lumbar puncture and some cerebrospinal fluid was removed. I thought that the improvement might be significant. It was the only time during her stay in Exeter that she showed any signs of improvement. For a day or two she seemed stronger and her mental function even began to improve a little. It seemed to me to suggest that there had been too much fluid around my mother’s brain. Maybe the lumbar puncture, by removing some of the fluid, had reduced the pressure and alleviated her symptoms. Maybe the diagnosis of normal pressure hydrocephalus was correct after all. The doctors to whom I mentioned this dismissed my suggestion and insisted that the improvement was simply a coincidence. What would a former GP and writer of books know about these things? No one actually patted me on the head but it felt as though they had done so.

After my mother had finally been diagnosed as suffering from normal pressure hydrocephalus (just before she died) I checked with a large medical textbook. Here is what it says: “To help with the diagnosis, doctors do a spinal tap (lumbar puncture) to remove excess cerebrospinal fluid. If this procedure relieves symptoms, normal pressure hydrocephalus is likely, and treatment is likely to be effective.”

There are very few devastating diseases that can be cured so cheaply, so quickly and so permanently.

In the spring of 2005, my mother was still in the hospital and her condition had deteriorated. On Monday 25th April 2005, I saw the neurology registrar at the Royal Devon and Exeter hospital who confirmed that my mother’s prognosis was bleak. The hospital staff still hadn’t made a diagnosis. The cancer diagnosis had been forgotten. I was told that six neurologists and numerous other consultants had seen her. Every conceivable test had been done. The registrar told me that it would be difficult to find a nursing home capable of looking after her. In addition to her physical paralysis, she was again diagnosed as suffering from dementia. I was told that this could be vascular or a consequence of possible encephalitis. It seemed clear that my mother needed to stay in hospital for the rest of her life.

I was advised that there were no nursing homes in Budleigh capable of looking after my mother. Afterwards, we sat by my mother’s bedside. Antoinette, my wife, was feeding my mother. I sat on the other side of the bed. As we left my mother pulled her urine catheter bag out from under the bedclothes and tried to blow her nose with it.

On Tuesday 26th April 2005, my mother was, at my request, moved to Budleigh hospital so that my father, who lived in Budleigh, could visit more easily. For six months he had visited the Exeter hospital once or twice a day to feed my mother (who would otherwise have almost certainly starved to death). I also wanted my mother out of the hospital in Exeter because I wasn’t terribly impressed by the nursing care she had received. If I had to choose two words to describe the hospital care they would be “apathetic” and “neglectful.”

On Wednesday 27th April, at 9.00 p.m., someone from Budleigh hospital telephoned my father (who is 85) and asked him when he would be moving his wife out of the hospital. This was the second time he’d received an evening telephone call that had frightened him out of his wits. My mum had been in the hospital for just slightly more than 24 hours. No one there had made any attempt to make a diagnosis. It didn’t strike me as the sort of hospital that does terribly much in the way of diagnostic work. It was, it seemed to me, what used to be called a cottage hospital.

My father was startled and shocked by the suddenness and timing of the telephone call asking him when he would be moving my mother out of the hospital. He got the impression that the hospital was planning to send my mum home for him to look after her by himself. She was incapable of doing anything for herself. She was doubly incontinent, required nursing on a ripple bed and had been diagnosed as demented. She had to be kept in a bed with cot sides so that she didn’t fall onto the floor. On the odd occasion when she tried to feed herself, she ended up with food everywhere – with the result that both she and the bed had to be changed. My mother was so incapable of moving by herself that the nurses had a hoist and a bed lift fitted to the bed so that they could move my mother around and in and out of bed. It took two nurses to move her up the bed. She needed constant nursing attention.

About the Author

Vernon Coleman MB ChB DSc practised medicine for ten years. He has been a full-time professional author for over 30 years. He is a novelist and campaigning writer and has written many non-fiction books.  He has written over 100 books which have been translated into 22 languages. On his website, www.vernoncoleman.com,  there are hundreds of articles which are free to read.

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