Early Care Experiences

Admission to hospital

Most of the people we spoke to had been admitted to hospital following their stroke. However, a few with more minor strokes or Transient ischaemic attacks (TIAs) had attended the hospital stroke clinic as day patients or had mainly seen their GP. It is recommended that people with stroke-like symptoms should not delay but should phone 999 and get immediate assessment at hospital (see 'Getting medical help' for the FAST test of symptoms that might be due to stroke).  Even for those whose symptoms have completely resolved when arriving at hospital, 50% (those at high risk of a full stroke) will require immediate admission to hospital, and those at lower risk will be referred for urgent investigation in a rapid access clinic.

Admission into hospital was usually via Accident and Emergency. It is recommended that people who have a stroke are admitted immediately to an Acute Stroke Unit to receive comprehensive specialist stroke care. This happened to some people who were put immediately onto a ward specifically for patients with stroke. Others were not given immediate specialist care, but were temporarily put onto a general ward or surgical ward because of lack of a suitable bed. A woman who was initially put on a surgical ward found the experience very frightening because her stroke made her confused and she thought that she was going to need surgery. A man who was left on a surgical ward for a week felt he was not receiving proper care. He complained and was eventually moved. 

At first he was put on a surgical ward but felt he wasn't getting the proper care so complained and was moved.

Some were first put onto an acute ward and then were moved to a specific stroke rehabilitation centre which was sometimes in another hospital (see 'Talking about - What happens now? Rehabilitation and care').

He was temporarily put on a general ward before being moved to the specialist stroke unit. There was a delay over the weekend but he did not worry.

People we spoke to who were unconscious, or only partially conscious, after their stroke were usually put into intensive care or a high dependency unit. They often had little memory of this time, although a few had vague memories of conversations with friends and family. One man's daughter had kept a diary of this time which he found interesting when he recovered.

A couple of people had been overseas when their stroke happened. They had travel insurance and felt they had received good hospital care, although they found that relatives sometimes had to help with personal care in hospitals overseas.

Early experiences and memories of hospital

The first few hours on the ward was when many people started to realise the extent of their stroke and it effects on their body. A few people told us that they had tried to get out of bed, usually to go to the toilet, and had discovered that they were unable to move. Others commented on feeling that parts of their body did not feel like they belonged to them or felt like a cold lump in the bed. Some tried to speak and realised that other people did not understand them. This was a very frightening and confusing time and people valued the reassurance they received from the medical staff and from friends and family that what they were feeling was normal for someone who had had a stroke.

Diagnosis, tests and monitoring

In the first few hours and days in hospital after a stroke, assessment, monitoring and treatment is very important because it limits the effects of the initial event, reduces the likelihood of further extension of the brain damage, and prevents complications which can be fatal. Lack of appropriate care at this time can result in increased likelihood of death, as well as the effects of the stroke being much worse than they should have been. 

Some people recalled ongoing monitoring of their blood pressure or neurological tests in the first 24 hours. These could sometimes disturb sleep although people found it reassuring that they were near the nurses' station and were carefully monitored.

In the first few days many people also went through further diagnostic tests establish the cause of the stroke and which parts of the brain had been affected (See 'Talking about - Getting a diagnosis').

Start of the recovery process

Getting up and out of bed and moving around if possible is recommended after a stroke.  Moving around reduces post stroke complications which can be fatal. Most people we spoke to were helped to get going as quickly as possible, which was a surprise to some people [Interview 16]. A few, however, said that for the first few days they were confined to bed. Whilst it was sometimes suggested that this was because they were too ill, it is not recommended practice. A few commented that lack of staffing, or their first few days being over a weekend or holiday, had meant that they did not get going quicker and some found this frustrating.

At first he was frightened about the impact of the stroke but was reassured if a little surprised that he would be helped to do things for himself very quickly.

Personal care and going to the toilet

Being helped with using the toilet and washing was a difficult experience for most people. Many described the experience as awful, degrading and embarrassing, although most recognised that it was just part of a stroke that they had to get through. One man commented that you leave your dignity at the door when you come into hospital [Interview 16]. Others saw it as a challenge that spurred them on to recover. A few said it did not bother them or that they had previous experience and knew what to expect [Interview 29]. 

Found it hard to get help with personal care and using the toilet and said that although the nurses are great you have to leave your dignity at the hospital door.

He was not bothered about being helped with washing and dressing because he had previous experience when he had been injured in the army.

Many people were initially unable to get up to use the toilet or if they tried were told not to. Men were provided with a bottle for urinating, which most found okay. Women, however, found that urinating in a bed pan or kidney dish extremely difficult and several told us about the embarrassment of wetting the bed or night clothes. 

Some people, normally those who had lost consciousness, had a catheter inserted, despite recommendations that catheterisation should be avoided unless there are specific exceptional circumstances. This had taken some people by surprise, because apart from not needing the toilet they did not feel the catheter. 

Bed pans or commodes were usually provided for bowel movements. Both men and women found this difficult and embarrassing. A few, however, said it had not been as issue as they had not needed a bowel movement for the first few days and put this down to the shock to the system.

Most also required some help with washing and dressing. Those who were bed bound initially received bed baths and some commented on how efficiently these were done. Others were taken to a shower or bath in a wheelchair. The first bath or shower people had was very much appreciated. 

She was hoisted onto a commode and eventually taken to the shower by a nurse which was a great relief.

Others found it encouraging that they were quickly expected to start returning to doing things for themselves.

Found it difficult to be helped with washing and said it was a turning point when the nurses started to leave her to wash herself.

The approach used by the person helping with personal care was important. People found it reassuring to be told that personal care was just part of the nurses' job. Others appreciated the nurses who were friendly and even chatty (see Interview 10 above). In contrast, people found it difficult when staff were disinterested or impatient. One older woman felt that nursing care was okay, but not as good as it used to be, but thought that this might be because nurses were expected to do some of the jobs that doctors used to do.

She had mixed experiences of nursing care but feels that personal care was sometimes neglected because nurses now have more responsibilities.