Rehabilitation: underfunded and underestimated

AUSTRALIANS believe in a world where, if you stumble and fall, you deserve a fair dinkum chance to have another go. Through my own experiences, I have come to recognise that painful reality.

Australia’s rehabilitation services, along with my extraordinary wife have carried me, supported me on my own long journey of recovery. It is a long and often tortuous journey, and I am one of the luckier ones. Teams of warm-hearted, professional experts have shared my journey, occasionally picking me up when I stumbled. Without them I might have surrendered to the injuries and subsequent depression that threatened to crush me.

As a critical care physician, I never considered how an individual fared after surviving brain trauma. If they were wheeled out of the intensive care unit alive, that was a win for us.

As a patient, 3 years on from the cycling accident that injured my brain, I have an intimate understanding of the complex challenges ahead of any survivor. I have benefited from outpatient, psychology, neuropsychiatry and physiotherapy expertise, and now I also benefit from being part of the brain injury community, sharing stories and experiences.

• Podcast with Dr Bruce Powell

So many of the challenges that present during rehabilitation are not even supported by our current system. Medicare does not cover examinations for life insurance or superannuation, ambulance services, most dental examinations and treatment, most physiotherapy, occupational therapy, speech therapy, eye therapy, chiropractic services, podiatry, or psychology services, acupuncture, glasses and contact lenses, hearing aids and other appliances, and of course, home nursing.

Impact of COVID-19

Data from an unpublished Australasian Rehabilitation Outcomes Centre (AROC) audit of 143 rehabilitation services reveal COVID’s devastating impact on the rehabilitation sector. The outcomes reveal rehabilitation’s low priority in the minds of government and health executives.

The data showed that 40% of inpatient rehabilitation services have been closed or repurposed; rehabilitation bed numbers reduced by 48%; outpatient rehabilitation services have been halved; and 72% of inpatient rehabilitation services reduced their patient admissions.

The impact of COVID-19 on rehabilitation nursing staff has been similarly dramatic. Forty-seven per cent of rehabilitation staff were deployed to other areas, and 83% of specialist services had specialist nurses replaced by inexperienced colleagues. In total, one-third of all inpatient rehabilitation allied staff and half of all outpatient staff were deployed elsewhere. Tellingly, 40% of those inpatient and outpatient redeployments were not due to services closing.

For anybody with an acquired brain injury, recovery is a lifelong struggle. Rehabilitation is a traumatic, all-encompassing experience for patients and carers alike. Governments and health resources do not yet acknowledge and prioritise this fragile partnership. This failure heightens the risk that the injured individual may never achieve a self-sufficient life, independent of medical institutions.

What is wrong with rehabilitation?

As with every “wicked problem”, the answer is complex and multifactorial. Rehabilitation is too painstaking and methodical to sustain a television drama; too expensive for public funding; too complex for government departments to collaborate upon. On the clinical side of the bed, rehabilitation staff are too devoted to their patients, too tired to march on Canberra, too busy to do anything other than “cope”. Rehabilitation culture, shared by staff, patients, and their families, is one of survival. Long term chronic rehabilitation services are often hidden in acute hospitals whose key performance indicators, unsurprisingly, focus upon bed occupancy.

With or without COVID-19, inpatient beds are at a premium. For the chronically impaired, the only way out of an inpatient bed is to be supported and cared for by their community. The path to an organised, expert discharge process is through rehabilitation and yet, at the time of greatest need, we have cut the services that supervise that path.

The Royal Australasian College of Physicians (RACP) extol the virtues of a devoted Australian Faculty of Rehabilitation Medicine (AFRM) stating how the AFRM’s focus on interdisciplinary training and teamwork should make their physicians the “natural leaders for teams of allied health staff, nurses, and other medical practitioners”. Certainly, goal-directed rehabilitative care provides coordinated, patient-focused, individualised programs that have the potential to reduce costs and improve brain injury outcomes. Ironically, despite collegial support, many Australian rehabilitation facilities are still run by non-AFRM fellows.

No one is suggesting that non-specialist clinicians, politicians and health executives don’t care about patients with brain injury. It has always been difficult for politicians and administrators to discuss the financing of health care without seeming callous and cruel. We hear endless media accounts of the spiralling costs of the National Disability Insurance Scheme (NDIS), but nothing of the money saved by effective rehabilitation.

The funding of rehabilitation is difficult for governments of all political persuasion. Costs to the public health budget, for an individual patient, can be huge. Conversely, the social and economic benefits derived from a patient’s successful rehabilitation are reimbursed across a diverse range of cost centres. While government budgets change annually and the political landscape shifts with each election, unequivocal support of the rehabilitation sector, both patients and staff, must be guaranteed into the foreseeable future.

There is a systemic underestimation of the cost-effectiveness of rehabilitation. Although rehabilitation is expensive, costs are regained within a few years and continue for a lifetime. Definitive peer-reviewed evidence from the UK demonstrates that inpatient rehabilitation is most cost effective in those with the most significant dependency on admission, costs are recovered more quickly, and the average annual savings are much higher.

One of the key challenges in traumatic brain injury data-collection is the so-called ceiling effect. That is to say that high dependency patients are difficult to score and the most remarkable improvements are hard to quantify. Similarly, improvements in those who are independent on admission might be missed, despite substantial benefits in terms of cognition and behaviour. Effective inpatient rehabilitation also shortens the bed days accrued, reducing costs to the hospital. Thus, intensive inpatient and outpatient rehabilitation and support can save huge amounts of money in the short and long term, even enabling some of these individuals to return to employment.

Throughout the current election cycle, irrespective of the origins of the NDIS, why haven’t we heard Ministers of all political persuasion trumpet the success of the NDIS and vow to bolster it further in the future? Even if we discount the fiscal benefits, the value of the inspirational, courageous stories among patients with brain injury is incalculable. The Australian community appreciates the value of the compassion and generosity that abounds in this sector, be they families, sportspeople or domestic violence victims.

As a patient living a new life thanks to my wife and the health services who supported her, what else am I to do but advocate and demand bipartisan support for rehabilitation? As the consumer representative for the Australian Rehabilitation and Outcomes Centre, and a former State Leader for DonateLife, I am mindful of the difficult job that faces health executives and politicians alike. I do believe that patience and an inclusive, compassionate, strategic plan can deliver financial and societal rewards for Australia. That does not mean abandoning patients to their carers, but standing next to them both, shoulder to shoulder.

It is difficult to manage the complexity and politics of health. But when I attend a rehabilitation clinic and see tetraplegic, tracheostomy-dependent patients, and their devoted families, I feel obliged to remind myself what “difficult” really looks like.

We owe it to courageous patients and their extraordinarily generous carers, to cherish our rehabilitation services.

Rehabilitation is the starting point for health care, not the dumping ground. We must be proud of our commitment to costs like the NDIS, in a positive, balanced way, not as an ever-expanding expense. We must celebrate the courage of patients and the professionalism of those who care for them. The more we care for people, patients, carers and staff, the more we, as a community, will profit in the long term.

Dr Bruce Powell was formerly the State Director for Organ Donation in Western Australia and is now an advocate for patients with brain injury. He is the Consumer Representative at the Australian Rehabilitation and Outcomes Centre.

The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated.

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