Acting on the experiences of stroke patients

ANALYSIS: The deficits in care for patients who suffer strokes revealed in a new report pose a major health challenge, writes…

ANALYSIS:The deficits in care for patients who suffer strokes revealed in a new report pose a major health challenge, writes Dr Muiris Houston

WITH ALMOST 10,000 people admitted to hospital in the Republic each year following a stroke and an estimated 30,000 stroke survivors here, today's publication by the Irish Heart Foundation (IHF) of the first national audit of stroke care is a significant milestone in Irish healthcare research.

By combining six separate strands of research encompassing the hospital and community care of the stroke patient as well as a nursing home survey and a study of patients and their carers, the IHF's national stroke review group has provided us with a wealth of previously unavailable information.

While we were aware of the parlous state of stroke services in our hospitals, it is still a shock to find that just 1 per cent of patients who might benefit from clot busting therapy (thrombolysis) were actually assessed for it.

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This is in marked contrast to the availability of a similar life-saving intervention for people who present to hospital emergency departments with an acute coronary syndrome (an event that immediately precedes the onset of a heart attack). But the almost complete absence of dedicated stroke units, known to reduce death and disability by 25 per cent, means that people are unnecessarily dying as a result of this deficit alone.

Why do stroke units make a difference? Care provided in comprehensive stroke care units has been shown to reduce mortality after a stroke. Extrapolating from UK data it has been estimated that 350 -500 deaths a year could be saved by the introduction of stroke unit care in the Republic. In addition stroke units reduce the length of time patients stay in hospital and provide better long-term patient outcomes due to an improved access to rehabilitation services.

The long waiting times for occupational therapy and speech therapy in the community are also worrying. In addition, the finding that, in one in four cases, the follow-up of stroke patients in the community, organised by the hospital never materialised, points to a severe shortage of services to ensure the ongoing recovery of the stroke patient. Nor was the emotional care of the stroke patient adequately resourced.

Sadly, while we are now producing additional therapists from our universities, many are forced to emigrate because of HSE cutbacks. Indeed, local health managers reported a lack of funding and the imposition of staffing ceilings were preventing the provision of adequate stroke management services in the community.

A valid criticism of the health service is that it does not listen to patients. So the experiences of the stroke patients and their carers described in this study must be noted and acted on.

Just 45 per cent of respondents said they were involved in decisions about their care while in hospital. Comments such as "it is very difficult to get information" and "I found it difficult to meet and talk with doctors" are as relevant as a delay in accessing CT scans after a stroke.

Patients and their carers were also let down when it came to the interface between hospital and community care. "He needed a wheelchair but was sent home without one. It took two weeks and had to be collected" is, unfortunately, not an isolated patient experience. The fact that three-quarters of the patients interviewed said that no family conferences took place prior to hospital discharge is probably the key finding in explaining why a smooth return home is not the norm for stroke patients.

"She was on three hours home help a day, then it was cut to one hour/day, then stopped without any notification" explains why, in many cases, stroke patients under the age of 70 paid for such services out of their own pockets.

One of the key recommendations in the report that would go a long way to solving the apparent breakdown between hospital and community services is the need to have a "central" health service contact person who would sort out gaps in care.

Dr Brian Maurer, medical director of the IHF, summed up the situation succinctly when he said: "If a person has a stroke tomorrow, the reality is that the quality of care they receive is determined by chance, location and a haphazard combination of circumstances . . . Acute rehabilitation is only available to  1 in 4 patients which is why so many survivors of stroke are left with avoidable and unduly prolonged disability".

The report shows that stroke care is every bit as patchy as cancer care. It is time for the Minister for Health, Mary Harney, to set up a national stroke control programme.