Experiencing the NHS as a Patient

During a week in which the NHS received much negative press coverage (1-7 October 2007), I spent the best part of 6 days in an NHS General Hospital. While the Government appears to be concerned with the numbers of admissions, waiting lists, MRSA and cutting costs, very little emphasis is placed on patient experience. I would like to share my experiences with you as objectively as possible, but first feel a need to present my credentials.

I am 71 years old and an Emeritus Professor of Gerontology after a university research career during which part of my energy was directed towards improving social policy and services for older people. In the course of my professional career, I have visited medical facilities in Australia, Canada, China, Denmark, France, Germany, India, Japan, Sweden, Slovenia, Poland and the United States. I have worked in a range of countries and have experienced conditions in urban and rural China and India, so am not easily fazed by less than optimum standards of cleanliness or privacy.

I serve on the North Wales NHS Research Joint Advisory and Grants Committees and am Chair of the Older People & Ageing Research & Development Network (OPAN Cymru) Steering Group. I served briefly as a non-executive director of the Oncology Unit at Clatterbridge Hospital. I am on the editorial board of several professional journals, including Quality in Ageing: Policy practice and research and Dementia: The international journal of social research and practice. I regularly review research proposals, research reports, papers for publication and abstracts for conference inclusion.

While I could afford private medical care, I support the NHS and an integrated health service. I do not have private health insurance on principle. I would wish that every person in the United Kingdom received a high standard of health care, comparable with other developed countries.

On Day 2 of my stay in hospital, the papers (Guardian, Daily Post and Daily Mail, which I read) reported that in the context of Europe, the standard of health care in the United Kingdom comes 17th, lower than some countries of the former soviet bloc. Our cancer survival rates are among the lowest in the world, our waiting lists among the longest and our record on super-bugs and access to new drugs and dentists is damned as ‘poor’ and when value for money is taken into account, the UK comes 26th out of 29 in the league (Daily Mail, Day 2). It was also noted that more than half of patients in UK hospitals are dissatisfied.

General Practice: Generally my health is good but on 30 September I experienced some rectal bleeding. On 1 October it was worse and I telephoned my general practice. I was given an appointment immediately without discussing my symptoms. The surgery is clean, well ordered and offers electronic check-in in reception and computer records on the GPs desk, added to during consultations. I was given a probable diagnosis and advice and told that if the problem deteriorated I should go to A&E. By early afternoon I was in A&E of the local general hospital. I was admitted to the hospital, put on a drip and restricted to only water by mouth.

The envelope of the letter given to me by the hospital on discharge to be delivered to the GP had the wrong address on it. I needed to open it to ensure it referred to me and not another patient.

Hygiene – Infection Control: I admit that I was anxious about being admitted to this hospital. My mother had been admitted during her nineties on several occasions. She had been very ill twice from hospital-acquired infections and had on another occasion (aged 92) refused to be admitted with a broken leg because she was afraid of further infection. Earlier this year a friend had been admitted to the same hospital with a mental illness, contracted a severe lung infection in hospital and died in ITC. A life-long friend in the South of England, suffering from non-Hodgkin’s lymphoma has contracted MRSA in hospital and is now a carrier.

It has been suggested that much of MRSA infection comes from outside the hospital. All the more reason that people coming in from outside should all disinfect their hands before they have access to treatment areas. Within the last two years I had visited patients in this hospital and had been concerned that there was no clear point at which outsiders entering wards were expected to use disinfectant on their hands. Since that there has reportedly been a drive to enforce stricter hygiene standards. I expected to find improvements. In my experience better precautions are taken to prevent the spread of FMD and they are better observed.

I was therefore disconcerted to realise that there was still no obvious place through which outsiders had to pass where disinfecting their hands was expected. No bottles of hand rub were clearly visible on entry to the ward although there was a bottle at the end of each bed. However, I saw few visitors use it and some staff did not use it either. It is important to stress that this was a surgical ward reputed to be probably the best in the hospital (personal communication from a consultant.)

Day 5 of my stay, the Daily Post ran an article headed Ward sisters may get more power over cleanliness. It was reported that Hospital sisters could be handed more power to help fight infections. Edwina Hart is cited as stating, ” I consider a major part of a ward sister’s role is to improve the environment of care including the cleanliness of the ward ….” I refer to this in the next section. However, it is the hygiene of the whole hospital that needs attention before entry to wards is achieved.

Hygiene – Lavatory and Washing Facilities: I was asked to collect all my urine, faeces and blood in a bedpan and hand each one to a nurse so that output could be measured. There appeared to be four patient lavatories for a ward of 36 patients (females and males). Two were in cubicles with nothing else, i.e. no way of washing and nowhere to put anything down – such as full bedpans or clean clothing. Since I was bleeding, I tried to use a lavatory with a washbasin, soap and waste bin in the same cubicle. Even if these facilities were clean they would be inadequate.

In most instances, I needed to clean the lavatory seat before I felt I could use it. The seat more often than not showed evidence of urine or faeces, occasionally blood. Why did I clean it myself? I did it myself because often I could not wait for someone to come and clean it for me. There was often urine on the floor sometimes starting to crystallise as it dried. There were frequently used incontinence pads lying around and used toilet paper discarded on the floor. The lid of the waste bin, occasionally overflowing or already holding used intimate dressings, was the only dry place where anything could be put down.

Subsequently, I was expected to take the used bed pan to the nurses’ station and ‘hand it to a nurse.’ On most occasions the pan contained badly smelling dark blood and blood clots. Sometimes nurses took it from me, sometimes I had to ask a nurse to take it from me, some nurses avoided eye contact, once I felt so faint and dizzy I had to put it down on the floor and once I had to ask a doctor to take it from me.

For all visits to the lavatory I had to trundle the stand for the drip with me. It was old-fashioned, heavy and the wheels squeaked so loudly that not only did it draw attention to me every time I went to the lavatory but the noise woke up other patients day and night. As I became weaker it became heavier. This stand was heavier and more old-fashioned than one I had used in a Californian hospital 35 years ago.

I felt that my squeaking drip stand made everyone aware of my presence as I arrived at the nurses’ station with my bedpan of foul smelling blood to wait for someone to take it from me often in front of patients, porters and visitors. Luckily I am not someone who is easily embarrassed but this was a thoroughly uncomfortable experience exacerbated by my increasing weakness and dizziness and I did wonder how other more sensitive patients might cope. By Day 5 I was off the drip and discovered that the staff and visitors’ lavatories near the lifts to other floors were marginally cleaner and stopped using ward lavatories or bedpans and no one seemed to notice.

I felt well enough to take a shower on only 2 days after the drip had been disconnected. The shower cubicle I used was dirty and the door was broken. The grouting was filthy and did not appear to have been cleaned for a long time. No bath mats were provided. There was one dirty plastic chair. On one occasion I had a bad bleed in the shower. I cleaned away all the blood and asked the cleaner to disinfect the shower, which she agreed to do. But what else from other patients had only been flushed away with water? On both occasions I felt I might faint and was forced to sit on the dirty plastic chair to recover.

There were two washbasins in curtained cubicles near one shower. These facilities were shared by the whole ward and some of the other women repeatedly expressed their dismay that men walked in on them when they were washing.

Ward sisters may get more power over cleanliness (Daily Post, 5 October 2007). Wrong! They may be given more responsibility, but they have no power to change outdated and inadequate facilities and however often they check they do not have time to check often enough because the use by often very ill patients is heavy. Staffing levels make it difficult for all clinical/nursing work to be accomplished. I was told that the lavatory and shower facilities had not been improved over the last 37 years.

This is a hospital in a rich developed country. In airports and other public places in Europe, lavatories flush within seconds of one standing up and a new clean seat cover rolls out to replace the used one. But in this hospital there were not even any old fashioned seat covers. On Day 1, a letter from Lord Roberts was published in the Daily Post asking why so much money is to be spent on prestige buildings for the Welsh Assembly Government while the health service in some postcode areas denies patients life-saving treatment. The fact that low budget cleaning and maintenance tasks cannot apparently be afforded is another problem.

Equipment and (minor) Material Resources: I have already mentioned the noisy and heavy drip stand above. Later in the week, after I was off the drip, another patient used it and it was still squeaking and she too found it heavy. Oil would make the stands easier to move and quiet. The tables which can be pulled over the bed were also very heavy and the wheels squeaked and needed oil. Most patients could not move them. They were also disturbing if patients were sleeping. An oil can on every ward would help, would not need legislation and could possibly be absorbed by existing budgets.

Bedside chairs made a loud shrieking noise when pushed against the floor, but most patients were too weak to lift them. This could be remedied by small pads on the feet.

I read a lot but the light over my bed flickered all the time I was there. The NHS is to be commended on adopting energy saving bulbs, but the fitments were not entirely compatible and that was the problem I was told. I was told that they would ask an electrician to come and look at it but no one came. Perhaps the Hospital Friends volunteers, the Rotary, or some other charitable organisation could raise the money to provide adequate and safer electrical connections.

Another patient had expected to be transferred to a cottage hospital on Day 1, then on Day 2. She was dressed and ready to go all Day 2. At 19.00 she was told that there was no ambulance available to take her. She was finally transferred on Day 4. A relative was prepared to take her by car but the rule is that such transfers must be by ambulance. She had told me that she had only a short time to live as a result of secondary and metastasized cancer and “I feel I am just wasting some of the days I have left.” She was, of course, blocking a bed in the acute hospital while another bed in the cottage hospital was being held for her.

A related matter is telephone use. Over the last year or so, press reports have informed us that the use of mobile telephones in hospitals is not hazardous for medical equipment. This information had not permeated the hospital to which I was admitted. Iconic signs forbade their use. When I enquired about this of the nurses, they told me that this information seemed to be very slow getting through and they were not stopping patients using their mobile ‘phones. Every day telephone calls for patients continued to come through to the nurses’ station. This not only tied up those telephones, but used valuable nurse time. Now that most people have mobile phones a saving of time and energy could be made.

Treatment by Doctors: Overall I am satisfied with the medical care I received. I accept that doctors have to see many patients, that medical situations change from hour to hour or day to day, but I felt that I could have been given better information or explanation at times.

I found it difficult to understand why it was necessary, before I reached the ward, to undergo maybe 5 digital examinations of my rectum. Did each doctor expect to find something different? Had no doctor recorded his findings to share with others? Were they students practising? How do more easily embarrassed patients or patients in pain cope with this?

The more senior the doctor, the less likely they were to introduce themselves by name. I had to ask who they were and the response seemed to indicate that this was considered rather quaint behaviour. A first response was, “I’m the consultant” and I had to ask again for their name. They called me by my first name but introduced themselves as Dr. Whatsit, giving no first name.

Day 1, I was told you will need a sigmoidoscopy tomorrow. Day 2, as I recall I was told you will have a sigmoidoscopy later today. It did not happen. Day 3, I was told that I would not have a sigmoidoscopy as I was still bleeding and they would not be able to see anything. I would be sent home when the bleeding stopped and come in as an outpatient for a barium enema. I asked them how many days they were prepared to wait. They seemed unsure. Something was said about a transfusion if the blood count continued to drop. Day 4, I was told that since the bleeding had not stopped, I was having the sigmoidoscopy later that day, which is what happened. No mention of not being able to see anything. By this point my confidence was undermined by what seemed to be contradictory ad hoc reasoning. I raised this but received no really satisfactory answer.

By Day 3, having eaten nothing since breakfast on Day 1, as a borderline diabetic and still bleeding I was feeling increasingly faint and dizzy. The evening before, I had been given a sugary drink by the nursing staff because my blood sugar was down to 3. I asked the doctors why I could not have food. They said I should have to wait until after the exploration. I could not follow their logic and reminded them that they had just said I would not have the sigmoidoscopy but was to come in as an outpatient for a barium enema instead. They admitted that I was right and I was allowed to have food.

My confidence in medical decision-making was being undermined. I had a lot of questions to ask before signing the release for the procedure. On the basis of recent reports in the press I needed to be reassured that this was the right clinical decision and not a cheaper option. I no longer feel assured that doctors in the NHS have the freedom (or power) to make the best clinical decision.

I have had diverticular disease for ca. 40 years. They had told me that this type of bleeding usually stops of its own accord. I was still bleeding. Recent press reports have noted money saving clinical decisions. Would a scan be more appropriate than the sigmoidoscopy? I needed to give informed consent and to understand their logic. I was aware that a scan costs nearly twice as much as the other procedure and I needed to be assured that the decision was being made on clinical grounds. The doctor was very helpful, was not defensive and reassured me. I watched the monitor and was able to ask questions. Nothing was found except the old diverticular disease!

Nurses’ Treatment: For the most part I felt treated well by the nurses and most of the disappointments were, I felt the result of shortcomings in the funding and management of the hospital. Often I did not ask for help because it was clear that nurses were under stress to get everything done and often there was no nurse around.

I had lost a lot of blood and the first night on the ward I was cold. Eventually I asked for a second blanket. The nurse was apologetic and explained that there were no extra blankets to be had. I later discovered that many patients send for blankets and pillows from home because of shortages or low quality provision in the hospital.

On Day 3 the 85 year-old woman in the next bed could not eat her breakfast until she had worked hard to get the attention of nurses to bring her her false teeth. As mealtimes have now been made ‘protected time’ nurses were less likely to be available. On Day 4, I did not eat my cereal because there was no milk available.

The woman above had been a nurse herself. Every day she had to ask repeatedly for post-operative pain relief because of shift changes. She complained vociferously.

Nurses clearly had assigned tasks. However, they were often called away in the middle of performing them to help others. They worked together co-operatively, but there were not enough of them to meet all needs:

On more than one occasion I was left with blood pressure cuff and finger heart rate monitor until a nurse returned. During her absence the BP cuff pumped itself up three or more times.

Another patient had pain in her legs and was offered a stool. It was ca. 36 hours before it materialised, during which time she spoke frequently about her discomfort.

I was bleeding heavily and thus drinking a lot of water to counter thirst. A nurse said that she would fill my empty jug one evening but I had no water all night.

I had brought supplies of all of my medications from home. When one (simavastin) ran out it was not immediately refilled and there was none on the ward the next time it was needed.

When my blood sugar dropped too low I was offered a drink of Lucozade, but the nurse found there was none on the ward.

When my blood sugar leapt up 24 hours later, I was asked what I had eaten, but had only eaten the hospital diabetic food. I think it was probably salad dressing and mayonnaise that were probably not diabetic.

To me all these and other incidents indicate that not enough allotted time is being purchased by the NHS.

I was upset on one occasion when a senior nurse reprimanded a less qualified nurse and a student nurse loudly in front of patients. This was not professional behaviour and the student nurse looked at me and seemed embarrassed.

I was distressed by the way the nursing staff addressed patients, although after the first couple of days I recognised that this is some sort of nursing micro-culture. The patients are addressed as ‘my darling’, ‘sweetie’, ‘love’ and other terms of endearment, not occasionally, but constantly. This seemed very condescending and patronising to me.

The patronising approach came to a head when the Sister/nurse in charge of the ward reminded me in front of doctors that I would be going ‘for a look up the back end’ (or words to that effect) with appropriate hand gesture. When challenged, it was suggested that some people might not understand medical terminology. I pointed out that I had observed patronising attitudes to other patients and to less-qualified and student nurses. After a defensive response, to be fair this was later acknowledged and accepted.

On Day 3, a woman was admitted to the bed opposite me from a psychiatric unit. I have no way of knowing, but from body language and demeanour, I guessed that she was a long term patient. It was soon very clear to me that she was a Welsh speaker who was less comfortable in English. However, there was only one nurse who spoke to her in Welsh – and none on the night shift. Most of the other patients and nurses ignored her. I went to speak with her and because I pronounced her Welsh first name correctly she broke into a smile, but was then monosyllabic when I tried in English to ask how she felt. She looked sad, lonely and distressed.

The mentally ill woman (I will call her E) was restless and got into and out of bed frequently. Occasionally she wandered towards the nurses’ station opposite. During the night between Days 4 and 5, I found it hard to sleep as there was loud conversation going on at the nurses’ station. E. kept getting out of bed and heading for the lavatory holding up an incontinence pad in front and behind. No knickers had been supplied. She was repeatedly told to ‘get back into bed’ and ‘go to sleep’. Not only did this keep all the other patients awake but in my case I felt increasingly disturbed and upset at the way a vulnerable woman was being treated.

At the end of the day shift of Day 3, I became aware of the fact that one senior nurse remained on the ward. Two night shift nurses – I think one SEN and one student – tried to persuade her to go home. She said that she was not prepared to leave them without adequate cover as she had realised that it could be a difficult night. If necessary, she said she would stay all night. She telephoned nurse management but was told that there was nothing that could be done and no nurses were available. She then telephoned other wards. One ward offered a student nurse for one hour for ‘settling down’ and another ward said that a trained nurse from there would visit the ward at regular intervals throughout the night in case there was a crisis. She went home late but was back before 07.30.

Many nurses demonstrated dedication to their job and loyalty to their colleagues. I heard nurses urging nurses who were not well to go home and go to bed. Some were told they should have stayed home to take care of themselves. There was apparently some sort of ‘flu’ going around. Sick nurses insisted on coming in and staying to the end of their shifts because their colleagues would be even more short-staffed if they were there not there. Nurses I know personally tell me that they have been telephoned by management to ask them to come in even if they are ill. Taking time off to be sick is apparently not seen as acceptable behaviour.

Bear in mind that this was a surgical ward with a high need for asepsis.

Response to Psychological Stress: By the early morning of Day 5 I was very distressed and depressed. I had slept little. I felt weak and unsteady on my feet. I felt that the lack of cleanliness of lavatories, washing facilities and showers, the hit and miss hygiene measures and the general risk of infection in hospitals were a threat to my increasingly vulnerable state. I felt I needed to get out. I approached a nurse to arrange to self discharge. I was told I had to wait for the day shift. I felt suicidal and angry – but the bleeding was diminishing. By now acting irrationally, I checked the exits and found that fire doors were padlocked.

Just being in a hospital where both my parents, my husband and friends had been very ill, even though they did not die there, was upsetting. I kept thinking about the hospital infections my mother and my friend had suffered. I felt guilty because my children were worrying about me. I was concerned about the way other patients were being treated. Having worked all my professional life in the area of social policy and the care of older people, I felt heart-broken to find that conditions were if anything worse than they were 25 years ago. I felt that my efforts had been futile.

Both doctors and nurses were very supportive and kind, reassured me of my right to leave but tried to persuade me to stay for 48 hours without bleeding. I negotiated it down to 24 hours and in the afternoon agreed to stay for 24 hours. On Day 6 I was allowed home in the late afternoon.


The UK Government is reported to be increasingly concerned with human well-being (The Guardian, 5.10.07). Politicians and policy makers, too, are rethinking what government can do to make people more positive (op cit.). This is apparently to be achieved by reducing consumption. Many ways in which the well-being of hospital patients can be improved are self-evident from my experiences. I find myself with little faith that improvements will be made.

Visible lack of hygiene measures and dirty facilities, together with the recent experiences of family and friends resulted in my deciding to discharge myself irrespective of the impact on my health. When my mother refused to be admitted due to her fear of another infection, I was subsequently told by the general practice that, since she had refused hospital admission, she was not entitled to community care. I asked the doctors about this and they assured me that it would not affect my future care.

NHS patients who complain about a poor standard of care are at risk of being victimised, health inspectors warn today after the first national audit of the complaints system in England (The Guardian, 8.10.07). My mother’s experience suggests that the same is true in Wales. In England it was found that no hospital had comprehensive safeguards to ensure that people who complained could be confident their care would not suffer as a result. To be fair to the nurses and doctors I complained to, they were not only sympathetic and understanding but recognised that my complaints were valid. They appeared to be equally frustrated by the poor level of service.

In writing this report, I do not intend to criticise individual members of staff. I find it heart-breaking that a national health service of which the UK was once so proud, has reached such a parlous standard. The Government has suggested bringing in private companies to solve the problems of the NHS. There are many other European countries with national health systems from which the UK Government and Welsh Assembly might learn, including low budget countries which have achieved a higher standard of health care, such as Estonia and the Czech Republic; and better value for money such as Bulgaria, Poland and Latvia. As one of the richest countries in the world, the UK should aim to provide one of the best health care systems in Europe.

Emeritus Professor G. Clare Wenger Gwaenysgor, Flintshire

10th October, 2007