We should be so much better than this.

Post-stroke treatment neglects the most effective – and cost-effective – options. Patients, the health system and the whole economy pay the price.

Most people who have a stroke do not die. Not right away, anyway.

After 28 days, 80% of people having a first-ever stroke are still alive. By 12 months, the figure drops to 63%. And for those who survive that long, the chances of having a second stroke within five years are one in six.

The declining death rate from stroke – it’s now less than half the rate of 40 years ago – follows the general decline in general cardiovascular mortality. There are many factors in this, in both prevention and treatment. The strong decline in stroke deaths in the 1980s coincided with the introduction of statins to treat excess cholesterol and the widespread availability of screening blood tests. (The tick-up in cardiovascular deaths from 2019 is the result of COVID-19).

But although the death rates are going down, the number of cases is rising – partly due to the ageing of the population. Over the 20 years to 2021, the number of people having strokes in a given year increased by 25%.

Because more people now survive their stroke, the number living with the after-effects has risen substantially. The need – not only for acute treatment but also for rehabilitation and long-term support – is now much greater than it was two, three or four decades ago. But our health system has not kept pace. The emphasis has been on acute care, rather than on the longer-term care that is disproportionately needed in stroke patients. More people are being treated more quickly and effectively, with antithrombotic drugs administered soon after an attack, and treatment in specialist multidisciplinary stroke units.

But there is still a long way to go. According to the Stroke Foundation:

• Less than half of stroke patients spent the majority of their acute hospital stay in a stroke unit;
• Only 38% of stroke patients presented to the hospital within the 4.5-hour window for thrombolysis (clot-busting) treatment;
• Australian stroke patients received less timely thrombolysis than patients in the US and Britain.

Rehabilitation: the greatest neglect

The acute phase, however critical, is only the beginning of the difficult pathway for stroke patients. The shortcomings in rehabilitation and long-term support are also in urgent need of attention.

This table shows how different stroke is from most other conditions in terms of long-term needs. Measuring the burden of disease calculates the loss to patients from premature death as well as from disability. Usually, more than half of disease burden comes from death. But in stroke, by far the greatest loss comes from long-term disability.

In 2009, when the Australian Institute of Health and Welfare surveyed the area, an estimated 131,000 people were living with disability as a result of stroke. That represents about one-third of all people who have ever had a stroke. And although older people were more likely to be affected, the numbers among people under 65 (36,000) are considerable.

Most of those with long-term disabilities experience more than one problem. It’s easy to understand, for instance, why someone with significant physical limitations might also develop psychological symptoms. In 2009, 131,000 individuals accounted for 400,000 separate disabilities.

All of this indicates the critical need for multidisciplinary rehabilitation teams comprising a range of fields including physicians, specialist nurses, physiotherapists, occupational therapists, speech therapists and psychologists. But nowhere in Australia has anywhere near enough capacity to deliver the extent and intensity of care that stroke patients urgently need. Only Queensland comes close. The laggard is Tasmania, where the rate of public hospital rehabilitation treatments is only a third of even the inadequate national average.

Official guidelines in the US and Britain specify that people recovering from stroke need an intensive multidisciplinary therapy program consisting of at least 3 hours a day 5 days per week.

“Stroke rehabilitation is the lifeline of hope for survivors, their caregivers, and their communities in the days, months, and years after stroke” says the American clinical position statement. “It is imperative that governments and other funding agencies balance the support needed for acute stroke and stroke rehabilitation treatment.”

Though people can benefit from rehabilitation therapy at any time, most improvement takes place within the first six months after a stroke. It is therefore crucial that treatment facilities should be available for everyone who needs them during this critical period. In Australia, that is clearly not the case. Tasmania, by far the least capable state, is well behind even the inadequate national average.

As this table shows, care is available in Tasmanian public hospitals at a fraction of the rate delivered in the rest of the country. The only significant category in which Tasmania’s figure is higher is for “clinical assessment only” – that is, where a doctor assesses a patient’s needs but nothing else happens.

This is how it compares to the rest of the country. On a population-adjusted basis, New South Wales has an even worse result that Tasmania.

The need for post-stroke care does not coincide with its availability. The Australian Institute of Health and Welfare has issued the first estimates of the number of people experiencing a stroke, by state. Tasmania, with by far the lowest rate of rehabilitation care, has proportionally the greatest number needing that care.

Nor does stroke occur evenly across the population: it is strongly correlated with relative poverty. People with lower incomes tend to have greater levels of risk factors: obesity, smoking, high blood pressure, high cholesterol levels.

Despite that need, people in the lower socio-economic quintiles do not have proportionately greater access hospital care. The richest 20%, who can afford private care, have a relatively much higher rate. But with cash-strapped private hospitals walking away from rehabilitation, which doesn’t bring in enough money, it’s uncertain how long that option will last.

It makes little sense to scrimp on stroke rehabilitation, which is a relatively cheap option. Adequate rehabilitation can avoid much greater subsequent costs to the health system from further strokes, hospital readmission and community care. Public hospitals account for three quarters of all the health system costs of stroke treatment.

This is reflected in economic evidence, which shows massive savings – to the health system, to patients, their carers and the community. Intensive rehabilitation is more effective and more cost-effective that less-intensive interventions. Multi-disciplinary treatment is more cost-effective than lower-standard care.

A recent Australian cost-effectiveness study, published in the British Medical Journal, found that every dollar spent on rehabilitation for acquired brain injury – which includes stroke – resulted in a benefit of $92.

Into a black hole

The longer-term prospects for people dealing with the disabilities of stroke are even less inspiring. Associate Professor Kate Scrivener, a Melbourne-based clinician and researcher, and three other leading Australian practitioners in stroke rehabilitation wrote in the Medical Journal of Australia that long-term survivors have “fallen into a black hole”.

Scrivener ... 'recognise the realities'

“Stroke is a chronic, lifelong health condition, but it is managed like an acute condition in Australia. Typically, a person after stroke is admitted to an acute hospital for early management; they then receive inpatient rehabilitation if they meet the selection criteria, followed by outpatient rehabilitation. In reality, the amount of rehabilitation provided by the hospital sector is limited.

“Recent moves towards early discharge and rehabilitation in the home have been shown to be less effective in maximising function than inpatient rehabilitation, whereas functional gain is possible with investment in subacute and community rehabilitation. After hospitalisation, 64% of people after stroke are referred for community rehabilitation; however, the actual amount of community rehabilitation that occurs is profoundly low.”

The failure to provide adequate treatment, both at the acute and rehabilitation stages, ensures a large and avoidable cohort of people with disabilities that demand – but often don’t get – life-long care. That responsibility falls mainly on patients’ partners, parents and children.

The National Disability Insurance Scheme is not of much help. “In 2020,” the researchers wrote, “the NDIS supported 5,160 people who nominated stroke as their primary disability — approximately 1% of people after stroke living in Australia at that time.”

Stroke survivors do not usually qualify for the NDIS if their disability first occurred after the age of 65. That immediately disqualifies three-quarters of potential beneficiaries. Other restrictions, which fail to recognise the realities of post-stroke disability, made the NDIS all but irrelevant for stroke survivors and their carers.

“It’s time,” the Melbourne researchers wrote, “for people with long-term disability to have access to the services they need, when they require them.”

Under the present, fragmented system, no authority has overall responsibility for ensuring a more humane and, in the long run, cheaper – approach. Without a national effort, led by the federal government, nothing much is likely to change. But, as with so much in health policy, that national leadership is missing.