Early care experiences after a stroke

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 or 112 from a mobile 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, (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 (A&E). 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. In some cases, there were long waiting periods. 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. 

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 'What happens now? Rehabilitation and care').

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 its 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.

Some individuals have very little recollection of their initial hospital experience if they were in critical condition. One man recalled a near death experience where he had a very close brush with death.

Start of the recovery process
Getting up and out of bed and moving around if possible is recommended as soon possible after a stroke (NICE guidance CG162 June 2013).  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.

Personal care and going to the toilet

Help 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. 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. 

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. 

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

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 uninterested 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.


Last reviewed June 2017.
Last updated June 2017.



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