After a stroke people are seen by a number of health care staff including hospital doctors, GPs, nurses and therapy staff (physiotherapists, occupational therapists, speech and language therapists, dieticians and psychologists). Some people felt that they had received excellent all round care whilst others commented either positively or negatively on particular aspects of care that they thought important.
Some people commented on what they thought was good or poor quality medical care from general practitioners. For example, one person commented favourably that his GP had ensured he had good access to psychological support to help manage depression after their stroke whilst another commented unfavourably on a GP who would not come out to see them on the night they had their stroke so they called an ambulance and subsequently changed GP. A few were surprised that their GP was not more involved in their care after leaving hospital.
Being treated as a person
Most comments were on personal aspects of care. Many people talked about the importance of being recognised and treated as a person rather than a patient or ‘stroke victim’. It was important to be treated as an individual as each stroke is different with different symptoms and consequences.
Malcolm says, Ive had a stroke but Im not stupid.
Some felt their care had been excellent and that every effort had been made to make them feel cared for as an individual. One woman said she felt like a VIP.
Felt that she was shown great kindness in hospital and treated like a VIP.
Others, however, felt their care had been impersonal and had sometimes been judgemental or lacking in dignity. One young woman who was a very active fitness instructor and mother of two described how she felt when the consultant repeatedly asked her if she had taken drugs. She had, however, also experienced what she felt was excellent, warm, human care.
Felt judged and blamed and that she wasn’t treated as a person because she was young to have had…
People said that the best way to make them feel that they were treated as a person was to talk to them and share some interaction. One man whose ancestry was Indian said that nurses made assumptions about him based on cultural identity and that they assumed he could not speak English. He went on to say that he thought simple interaction would help nurse and patient build up a relationship. Another man felt that he had experienced terrible nursing care in hospital and contrasted this with kind, personal care he received from therapists. He advised health professionals working with people who have had a stroke to make time to talk as people.
Felt that nurses made assumptions about him without knowing who he is or what his background is….
Contrasted the kind, personal, care he received from therapy staff with that from nursing staff…
Small things matter
Some individuals talked about meaningful memories in care, including a caring nurse who took the time to chat, a health provider who would sit down and have a cup of tea, or a friendly dog visitor in the hospital. These small things made a huge difference during time in hospital which can be frightening, overwhelming and frustrating. Some individuals commented on what it is like when these small matters are not attended to, and how it negatively affects their experience.
Stellas daughter comments on the lack of attention to small matters (including dressing and…
A person, with communication difficulties due to aphasia, felt that the speech and language therapist was rude and not interested in her as a person, which she thought was very bad care.
Person with aphasia felt that the speech and language therapist was rude and did not care about…
Emotions and being believed
One of the things people said they did not like was when their emotional response to having a stroke – feeling upset and crying – was dismissed. One person was upset and crying when she was in hospital, however, she was outraged when the nurse said to her that she had no reason to cry and should stop because there were a lot of people worse off than her. Another person felt that it was wrong when she had told the occupational therapist that she was depressed by not being able to do things but the therapist, whose husband had been diagnosed with a serious illness, asked how she thought her husband felt and that she had better pull herself together.
Told the occupational therapist that she was feeling depressed by not being able to do things and…
People also responded strongly to feeling that they were not believed or felt challenged by a healthcare professional. One person described how her GP had challenged whether she was taking the correct medication, disagreeing with the medication prescribed by the hospital consultant. Even though she said that she argued with him and that he eventually agreed, she said it made her feel vulnerable and advised others to have someone accompanying them to the GP.
She lacked confidence when her GP tried to change her medication even though she had been told…
Another person lost faith in her neurologist because he didn’t believe that she felt completely numb on one side and she decided not to see him again.
Being able to ask questions and decision making
One of the things that people said was good about care was being given information about what was happening and being able to ask questions.
Felt that one of the good things about care was being able to ask questions.
Another woman’s consultant recommended that she have carotid artery surgery to help prevent further TIAs and stroke and she felt completely involved in all of the decisions, which she appreciated. However, a wife whose husband had been left very disabled by his stroke, wanted to care for him at home and felt completely unsupported in her decision, which left her feeling vulnerable and isolated.
Felt would have liked someone to talk to because felt very unsupported in their decision for the…
A young woman with stroke felt that health staff did not communicate well with her at all whilst in hospital which had a negative impact on her recovery.
Michelle felt that staff did not explain what was happening to her.
Good care for people with communication difficulties
How problems with communication were dealt with by health professionals varied. Some people felt that staff were well trained and made every effort to understand and communicate with them. Others felt that they were not given enough time or that the health professionals made no effort to try to understand them. One man felt that the speech and language therapist just could not find a way to communicate with him which made him feel rotten. Another felt that the care he received in hospital was good because the doctors and nurses encouraged him to take his time when trying to say something.
He felt the speech therapists gave up on him because they couldn’t make out what he was saying…
Felt that despite his aphasia communication with hospital staff was good because they encouraged…
Better management of medication
Some individuals were not clear about why they were taking certain medications, what the side effects were, and how they should be taken (time of day, with meals,etc). Some were wondering if a recent change in medication played a role in causing their stroke. Others felt that they should have been taking medications sooner to address health issues such as high blood pressure. One woman suggests that individuals should regularly request to have their blood pressure monitored and double check existing medication types and dosages with their doctors to avoid future problems.