Noise and difficulty sleeping, a lack of attention to individual needs and poor communication – stroke patients have laid bare their experience of “unpleasant” hospital environments in a new study.
Not being able to get a vegetarian meal, being told not to use a mobile phone after a certain time and call bells not working are just some of the criticisms recorded in the study by Royal College of Surgeons in Ireland (RCSI) researchers, the first to feature the opinions of those directly affected by stroke – patients, carers and healthcare professionals.
With communications identified as the “biggest gap” by most participants in the study, many stroke survivors and carers highlighted the difficulty in accessing staff to ask questions.
One carer described how she felt she had to “stalk” the consultant, while a patient treated during Covid-19 restrictions and who couldn’t speak felt staff “could have tried a little bit harder to perhaps understand”.
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Navigating the care system was extremely challenging, particularly at the time of discharge from hospital or rehabilitation. “Participants often felt that they had to ‘fight’, ‘push’ or ‘badger’ to secure needed services, which was time consuming and a source of stress. There was no standard post-discharge care pathway, with variation in service provision around the country,” the study by RCSI’s school of population health found.
Participants described how they “stumbled across” a service, while eligibility criteria were often seen as unclear and arbitrary, according to the study. “In particular, there were often age criteria for services and supports, with older adults unable to access more specialised services, and younger adults not entitled to support for equipment or housing adaptations.”
One patient described the shock of finding they couldn’t access neuro-rehabilitation because it doesn’t treat people aged over 65: “Sure, that’s just crazy ... It’s quite an insult ... You know 65 then, you’re ready for the heap.”
Professionals also believed insufficient therapy hours were being provided to maximise recovery. Several patients accessed private therapy services to supplement what was available in the public system.
While many survivors and carers were reluctant to consider long-term care, which was perceived as isolating and lonely with minimal stimulation, those who had taken this route often had positive experiences.
According to those interviewed, future stroke services must prioritise specialist community-based rehabilitation, ongoing support for life after stroke and better information and support for navigating services.
They also emphasised a need for improved staffing, access to specialist care and support for mental health. Stroke survivors and carers also thought more attention needs to be paid to improving speed of access to services for people with unusual or atypical symptoms.
In-depth interviews were conducted with up to 34 stroke survivors, 19 carers and 80 professionals for the study, published in PLOS ONE journal.
Of stroke patients admitted to hospital in Ireland, 10 per cent die, one-third have moderate or severe disability, one-third have mild disability and 20 per cent have dementia.
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