Long-term stroke survivors ‘in black hole’, warn experts


By Geir O'Rourke

21 Sep 2022

Long-term stroke survivors are falling into a ‘black hole’ after the initial phase of their care because the Australian health system only treats the condition as an acute one, it is being argued.

Rehabilitation experts say urgent reforms are needed to address the issue, arguing the current system is disjointed, leading to major inequalities in who receives which services and when.

In a recent perspective, they pointed to research showing that despite significant improvements in survival rates over recent years driven by advances in acute care, a large portion of survivors were left with lifelong disability.

Outlining the current model of care, the team said patients were typically admitted to hospital for early management, receiving inpatient rehabilitation if they met the selection criteria, followed by outpatient rehab.

“In reality, the amount of rehabilitation provided by the hospital sector is limited,” they wrote in the MJA (link here).

“It is time to focus on the individual burden of disease and how we can best support people with stroke in the long term.”

While 64% of people after stroke were referred for community rehabilitation, figures compiled by the Stroke Foundation showed uptake was seriously limited, said the academics from Macquarie University and the University of Sydney

And based on a 2020 report published by the foundation, 22% were discharged with no collaboratively developed plan for their ongoing care.

The other major problem was patients falling between the cracks of the health, disability and ageing sectors – mostly because the design of the NDIS meant it was difficult to access for patients with disability due to stroke.

They pointed to NDIS figures showing the scheme supported just 5160 people who nominated stroke as their primary disability in 2020, about 1% of those living after stroke in Australia at the time.

“If not eligible for the NDIS, people after stroke may need to wait until they are eligible for aged care services, which are currently not only inadequate but do not optimise participation and quality of life,” they wrote.

The team suggested this needed to change, saying the model of care should centre on the disability sector rather than the health sector to give survivors the best chance at an improved quality of life.

They added: “People after stroke need the ability to have regular ongoing check-ups with services implemented where required, more support for ongoing lifestyle changes such as text reminders, person-centred tools such as self-management, habit-forming exercise, ongoing gym memberships, and strategies for meaningful social interactions.”

“These issues are applicable not only for people after stroke but also for many others with ongoing disability. We support the urgency for a national rehabilitation strategy to move the rehabilitation focus from the hospital to the community.”

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