Anyone with a Relative or Friend in Hospital Must Read This
Dr Vernon Coleman MB ChB DSc FRSA
This is a true medical story.
* * *
The final year of my motherís life was a living nightmare.
And yet if the incompetent staff at two hospitals in Devon had been a little more alert, and a little less arrogant, my mother could have been cured. She had idiopathic normal pressure hydrocephalus but, despite her obvious symptoms, and much prompting, the diagnosis was ignored. Her treatment can only be described as uncaring and barbaric.
I still find my motherís story enormously difficult to relate but it should provide all of us, patients, relatives, doctors, nurses and administrators, with valuable lessons and so I have included it here.
My motherís story begins when, in October 2004, she had difficulty in walking. When she was 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. Suddenly, 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 and was described, by her consultant oncologist, as Ďfrail, confused, bedbound and dependentí. 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 but the oncologist who had made this diagnosis told me that my mother either had cancer of the breast or the lung with secondary deposits and that she was too weak for treatment. ĎThatís the nature of the beastí, said the consultant.
My wife (who has no formal medical training) made the diagnosis by keying my motherís symptoms and signs into a search engine. Antoinette came up with several different diagnoses. From the short list she produced, we both agreed that idiopathic normal pressure hydrocephalus was by far the most likely diagnosis. The disease fitted my motherís 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 idiopathic normal pressure hydrocephalus.
We repeatedly suggested the diagnosis of idiopathic normal pressure hydrocephalus but doctor after doctor rejected it until it was too late. They seemed bizarrely desperate to settle on every possible diagnosis that wasnít the right one, and in retrospect I can only suspect it was because they knew little or nothing about idiopathic normal pressure hydrocephalus.
Moreover, is it possible that my motherís condition was ignored or treated superficially because of her age? She was 83 when her symptoms started but had been in excellent health up until that point. A couple of weeks before the onset of her illness, my mother and father had visited my wife and me in Paris. While in France, my mother had been alert and perfectly mobile. She had walked 15 miles one day when we had strolled down from Sacre Coeur in Montmartre to the area around the Eiffel Tower, taking an enjoyable roundabout route.
After her illness began I repeatedly contacted my motherís GPs in Budleigh Salterton in Devon and I spoke and wrote regularly to the vast variety of doctors at the hospital in Exeter. On a number of occasions I suggested that my mother was suffering from idiopathic normal pressure hydrocephalus but the doctors and nurses seemed concerned only to produce diagnoses which were untreatable and terminal. Only at the end, when it was too late to do anything, did they agree that she had all along been suffering from idiopathic normal pressure hydrocephalus.
Sadly, I do not think that this attitude is uncommon. Medical staff take little interest in patients who are over 60 years of age, and this lack of concern has been endorsed and encouraged by politicians. The United Nations has introduced Sustainable Development Goals which allow governments and health services to discriminate against anyone over the age of 70 on the grounds that people who die when they are over 70-years-old cannot be said to have died prematurely and so will not count when a nationís healthcare is being assessed. The Sustainable Development Goals give politicians the authority to ignore the health needs of citizens who have reached their Ďthree score years and tení and who are regarded by societyís accountants as an economic burden. Indeed, there is, regrettably a widespread assumption in hospitals everywhere that anyone who is over the age of 70 (and, in some cases, 60) must simply learn to live with their problems and adapt to changes which are simply an inevitable part of the ageing process. The Liverpool Care Pathway, which entitles doctors and nurses to withhold food, water and essential treatment from patients who are over the age of 65 and who are, therefore, regarded as an expensive nuisance is still used as a guideline by many doctors and nurses and hospital bureaucrats who are searching for ways to clear Ďblocked bedsí and reduce nursing costs.
On Sunday 21st November 2004, we noticed that my motherís 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 hadnít 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 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 completely wrong.
My mother stayed in the Exeter hospital for the next few months.
(The Royal Devon and Exeter hospital where my mother was treated so appallingly is a teaching hospital where medical students are turned into doctors.)
Numerous consultants saw my mother and decided that there was nothing to be done. Just about every different doctor came up with their own favourite diagnosis but although my wife and I repeatedly suggested that my mother might be suffering from idiopathic normal pressure hydrocephalus, no one seemed keen to accept this solution. No one really seemed to know anything much about it. My motherís 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.
Idiopathic normal pressure hydrocephalus is not something of which GPs are aware. But it is the sort of thing teaching hospital doctors really should know about. I had never seen a patient with it. The hospital doctors looking after my mother listened politely to my suggestion that they consider idiopathic normal pressure hydrocephalus but immediately dismissed the idea and stuck with their neoplastic madness. There was never a shred of evidence in support of that diagnosis.
The care my mother received was appalling. She spent virtually all her time in bed, becoming steadily weaker. We couldnít move my mother to a private hospital because she had not yet been diagnosed, and clearly a private hospital would not have the investigative wherewithal. When I asked if I could send in private physiotherapists, I was told that I could not. The nurses on the ward did not seem to have heard of the danger of deep vein thrombosis or the need to avoid pressure sores by moving patients around.
On occasion, my mother would throw off all her clothes and we would have to rush to draw the screens while we fought to pull the bed covers over her. The nurses didnít come because the ward had been designed in such a way that from the nursesí station it was difficult if not impossible for nurses to see what was happening on the ward.
Once I sat beside my motherís bed when two nurses arrived. One said: ĎHave you had a drink this morning?í ĎYes thank you,í said my mother, who had been officially declared demented and mentally incompetent. ĎRight.í said the nurse. She wrote this information down on the fluids chart she was carrying. The cold cup of tea was standing, untouched, on the bed table in front of my mother. If we hadnít helped her drink, I firmly believe that my mother would have died of dehydration. Maybe that was the idea.
At one point during her stay in the Exeter hospital, at my urging, my mother had a diagnostic lumbar puncture and a quantity of cerebrospinal fluid was removed. Immediately afterwards she improved noticeably. For a day or two she seemed stronger and her mental function began to improve. It seemed to me that the improvement was significant and suggested that there had been too much fluid around my motherís brain. It seemed likely that the lumbar puncture, by removing some of the fluid, had reduced the pressure and alleviated her symptoms. Maybe the diagnosis of idiopathic normal pressure hydrocephalus was correct after all.
The doctors at the hospital all dismissed my suggestion and insisted that the improvement was simply a coincidence. What would a former GP and a writer of books know about these things? No one actually patted me on the head but it felt as though they had done so.
It was not until just before she died that my mother was finally diagnosed as suffering from idiopathic normal pressure hydrocephalus. Here is what one large medical textbook says: ĎTo help with the diagnosis, doctors do a spinal tap (lumbar puncture) to remove excess cerebrospinal fluid. If this procedure relieves symptoms, idiopathic normal pressure hydrocephalus is likely, and treatment is likely to be effective.í There are very few devastating diseases that can be cured so cheaply, so quickly and so permanently.
On Monday 25th April 2005, the neurology registrar at the Royal Devon and Exeter hospital announced that my motherís prognosis was bleak. The hospital staff still hadnít made a diagnosis. The cancer diagnosis had been forgotten. I was told that six neurologists and numerous other consultants had seen her and that 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 for 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.
On Tuesday 26th April 2005, my mother was, at my request, moved to Budleigh hospital so that my father, who lived in Budleigh Salterton, 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 wasnít terribly impressed by the nursing care she had received. If I had to choose two words to describe the hospital care, they would be Ďapatheticí and Ďneglectfulí. The hospital in Budleigh was clearly what used to be a cottage hospital Ė suitable for providing nursing care for local patients.
On Wednesday 27th April 2005, at 9.00 p.m., someone from Budleigh hospital telephoned my father (who was 85 at the time) and asked him when he would be moving his wife out of the hospital. My mother had been in the Budleigh hospital for just slightly more than 24 hours. No one there had made any attempt to make a diagnosis.
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 mother home for him to look after by himself. She was incapable of doing anything for herself. She was now 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 didnít fall onto the floor. On the odd occasion when she tried to feed herself, she ended up with food everywhere Ė 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.
My wife and I were in France when my mother was moved to the hospital in Budleigh. We came straight back and visited the hospital on Thursday the 28th April.
Within five minutes of my arriving at my motherís bedside, a nurse asked me to go to the sisterís office where a rude and aggressive nurse demanded to know when my mother would be leaving the hospital. My mother had, by then, been in the hospital for no more than 48 hours. I found the questioning cruel, unfeeling and inhumane.
My father, who had been in a state of shock, now became depressed as a result of the hospitalís attitude. Up until Monday the 25th April, my father had hoped that he would eventually be able to have my mother back home or that, at the very least, he would be able to take her out of the hospital for trips in a wheelchair. He had been making plans to buy a motorised chair and a suitable vehicle so that he could do this. He had retained the hope that someone would find a way to treat my mother and produce some improvement in her symptoms.
When I spoke to the nurse at Budleigh Hospital on 28th April 2005, I was told that an assessment had been done and that my mother was considered fit to move out of the hospital. I was also told that she was now regarded as mentally alert. My mother had, according to Budleigh Hospital, been cured from her dementia within two days. She had received no new treatment. The nurse admitted that my mother needed nursing care but insisted that mentally there was nothing wrong with her. The hospital had, she told me, already applied for an enforcement order to have my mother removed from the hospital. I was shocked by their ruthlessness.
In reality, there had been no change whatsoever in my motherís condition. Several neurologists at Royal Devon and Exeter hospital had already agreed that my mother was suffering from severe dementia and though it turned out that they had missed the primary diagnosis, there wasnít much doubt that a diagnosis of dementia was accurate.
I complained about the fact that my father had been rung at home the evening before but the nurse didnít seem to think that there was anything wrong with that. She didnít apologise. I wanted to know just how ill you had to be to be in hospital these days. I felt overwhelmed with guilt. I had arranged for my mother to be moved to the Budleigh Hospital so that my father could visit more easily. And now they wanted to throw her out. But where could we take her? I went back to sit by my motherís bed. As I sat down, my mother looked up and pointed to a stranger on the other side of the ward. ĎIs that Vernon over there?í she enquired. We were living a nightmare. She didnít know who I was. She didnít recognise my wife. And she often wasnít sure who my father was. When I talked to her, my mother didnít even know that she was in hospital. Somewhere in the hospital a bell rang. ĎThereís someone at the door,í she said.
A day or two later someone at the Budleigh hospital threatened to send my mother home in an ambulance, even though they knew that my father could hardly look after himself let alone care for someone who needed intensive nursing care. My mother was, said one NHS employee, terminally but not finally terminally ill. It was the first time Iíd heard the phrase.
My father was devastated. ĎWhat do I do if they send her home?í he asked. ĎDonít answer the door,í I told him. ĎDonít let them into the house. Call me.í
I was telling my father to refuse to let the ambulance men bring my mother into the house.
It was awful, just bloody awful. If the plan was to put us under pressure it was working very well. Iíd never seen my father so distraught.
My motherís GP at the time agreed that we would not be able to find a local nursing home capable of looking after her. No one at the Budleigh hospital seemed to me to give a damn about what happened to my mother as long as she wasnít their responsibility.
As far as I am aware, no one made the slightest attempt to make a diagnosis during the time my mother was in the Budleigh Hospital. Since they didnít want to nurse her and they didnít do any diagnostic tests, itís difficult to see the point of the hospital Ė apart from providing employment for the staff.
On the 11th May, I had to attend a meeting at Budleigh hospital to discuss my motherís expulsion from the hospital. I was told that the hospital did not have enough beds and desperately needed to get rid of my mother. There were four people at the meeting: two members of the nursing staff, someone who looked like an administrator and my motherís GP. The meeting was held in a completely empty ward. There were plenty of beds, all empty, and it seemed to me that this wasnít the first time the empty ward had been used for a meeting. If the hospital was short of anything it was patients, not beds.
The meeting lasted an hour and it turned out to be one of the most unpleasant hours of my life. It was not a meeting where the words Ďcompassioní and Ďcaringí figured large. I have been grilled by some of the countryís toughest television and radio interviewers. I have given evidence in the House of Lords and the House of Commons but nothing prepared me for this. For a solid hour, the four of them battered at me to take my mother out of the hospital. They used every manipulative and emotional trick in the book. I quickly realised that no one there cared a damn about my mother or my father. They just wanted to get rid of a patient who seemed likely to be a long-term expense. This was business. I was still desperate to try to find a diagnosis. I was still trying to support my father. I was grieving for my mother who no longer even recognised me.
I was told that my mother would be better off in a nursing home and that the hospital didnít have any long-stay beds. I was told that they needed her bed for other patients (no one seemed to see the irony in the fact that the meeting was being held in a completely empty ward) and that my father would be better off if my mother was elsewhere. They didnít explain how this could be when there was no nursing home for miles that would be able to cope with her needs.
At the end of the meeting I was told that they couldnít agree to my mother staying in the hospital and that she had to leave. I left the meeting and went back to my motherís bedside. She was still unable to move. She still didnít know who she was or where she was. She didnít know who I was. She was still faecally incontinent. She still had a catheter in her bladder to collect her urine. She still had to be fed. She still couldnít walk or even wash herself. But according to the hospital staff she was fine and mentally alert.
Ageism is the new racism: no respect, no consideration, no courtesy, no dignity, no caring.
For several weeks after that, my father didnít dare visit my mother at all. He was frightened that he would again be pressured by the staff to move my mother. He didnít know where he could take her. Overwhelmed with grief he was now also tortured by guilt and anxiety.
Another mental assessment was done on my mother. It was a sick joke. The assessor asked my mother what I did for a living. My mother thought for a while. ĎHeís a teacher,í she said at last. She didnít know who I was, let alone what I did for a living. ĎThatís close enough,í answered the assessor putting a tick in another box. My mother was declared mentally competent.
Later that day my father was sitting by my motherís side when the vicar called. My mother told him they were waiting for a train. The vicar thought it was a joke but my mother was serious. She kept asking my father why the train wasnít there and why there were dogs fighting in the vicinity. My mother now didnít recognise my father (to whom she had been married for over 60 years) or know what heíd done for a living. She didnít even know who she was or where she was. She held her head a good deal though and it was clear that she was having constant headaches. (No one at the hospital realised that these were caused by the increase in the amount of fluid surrounding her brain.)
On the 27th July, I attended another meeting in Budleigh Hospital. This time there were nine people there representing the hospital and the NHS. My motherís GP was there, together with two nurses, a Ďcontinuity care managerí, an Ďacting leading continuity nurseí, a Ďhospital care managerí, a Ďdischarge facilitatorí, a representative of the administrators and a representative from Exmouth social services.
Someone began by saying that they all had my motherís best interests at heart. Someone else said they were delighted to report that my mother was much better and was improving. I asked them why, if this was the case, they werenít giving her any occupational therapy or physiotherapy. No one had an answer to this. I asked them how they had managed to produce this miracle without any treatment. I wanted to know how a woman who had been officially declared terminally ill and demented, and in need of constant care, had suddenly become Ďphysically capable and mentally alertí after a few weeks in a small town hospital. No one had any answers.
In fact, of course, when the final diagnosis was made it was quite clear that my mother could not possibly have shown any physical or mental improvement. She was suffering from idiopathic normal pressure hydrocephalus which was steadily getting worse. NHS staff who said that my mother had recovered and was no longer demented and could be discharged were lying because they wanted to throw her out of the hospital.
When I pointed out that my mother needed intensive nursing care, a continuity care manager claimed, to my utter astonishment, that catheters, hoists and ripple beds were not medical equipment. I asked him what would count as medical equipment. He said a ventilator would count as medical equipment. The phrase Ďfinal stage terminal illnessí was now used. And again I heard the phrase Ďterminally, terminally illí. I asked how they knew that a patient was terminally, terminally ill and was told that they could tell this through liver and kidney deterioration. I asked if they had done any tests to check on this, and it was generally agreed that they couldnít remember whether any such tests had been done.
I have no idea why nine people wasted a good chunk of a day on such a pointless meeting. I hate to think what it must have cost. It occurred to me as I sat there that if they were all sacked there would be plenty of money left for looking after patients. I told them that the bullying had won and that we would take my mother out of the hospital so that they could have yet another empty bed.
The truth was that my father couldnít bear it any longer. The staff at the Budleigh Hospital were making us feel so unwelcome, and harassing us so much, that we had no choice but to move my mother. As far as the NHS was concerned, it was all about money. They wanted to avoid the cost of looking after my mother Ė even though they had a moral and legal responsibility to do so.
We found a private nursing home in Exmouth where for a vast weekly fee a week my mother had a private room which seemed crowded with three adults visiting. If a hotel had offered us the room we would have walked out in disgust. Naturally, there were now no attempts to make a diagnosis.
My father sold his home and bought a small house near to the nursing home so that he could visit regularly.
Towards the end of her life, we were visiting my mother in the nursing home when Antoinette pointed out that my mother had a swollen, bulging eye. (My wife had, by this time, more knowledge of idiopathic normal pressure hydrocephalus than the entire NHS medical staff in Devon.)
The diagnosis was now beyond doubt. My mother had a bulging eye because of the pressure inside her skull.
In idiopathic normal pressure hydrocephalus, the pressure within the skull remains normal because the expanding fluid volume compresses and destroys brain tissue. When the brain cannot be compressed any more then the fluid pressure must rise.
I contacted my motherís new GP and asked him to arrange for my mother to go back into Exeter hospital. I donít believe that he or any of the nursing home staff had noticed anything wrong.
In the Royal Devon and Exeter Hospital, the doctors at last confirmed the diagnosis of idiopathic normal pressure hydrocephalus. It was the diagnosis weíd offered them months earlier. Numerous consultants (including several neurologists), countless junior hospital doctors, two GPs and several dozen nurses all missed the diagnosis. If theyíd acted within days or even weeks of her being admitted to hospital then they could have saved her life. We watched my mother die a terrible, slow death. She died because the doctors failed to make the diagnosis until it was too late.
The moral is simple: donít trust doctors or hospitals. Always ask questions and prepare to make yourself unpopular on behalf of anyone receiving medical treatment.
Copyright Vernon Coleman 2016
Taken from Millions of Alzheimerís Patients Have Been Misdiagnosed (And Could Be Cured) by Vernon Coleman, available as an ebook on Amazon.