Reform rehabilitation services for TBI patients in the UK.
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Dear Mr Bryant,
We are writing to you in your role as head of the All Party Parliamentary Group for Brain Injury.
Brain injury is common and has the potential to be utterly devastating. There are almost twice as many hospital admissions per year for brain injury as for heart attacks (1-2). Traumatic brain injury, a major cause of disability in the young, is a particularly pressing public health problem.
Traumatic brain injury survivors often have a range of long term consequences. These include major cognitive, psychiatric and physical disabilities, which are life-changing (3). The personal cost is huge. Many patients are unable to continue to work or study, and relationship breakdown is common.
The cost to society is even higher. Over half of those who have a traumatic brain injury are of working age, meaning that any burden of disability has widespread and severe effects (4), as people lose the ability to provide for their families and companies lose valuable employees. A conservative estimate is that £5 billion is lost each year due to on-going care costs and loss of economic productivity (5).
Yet, for such a common problem, with such a high personal and societal impact, our current care provision is simply inadequate. We can, and should, do so much better.
A patient having a heart attack has seamless care from the hospital into the community. There are national guidelines and service frameworks which specify gold standards of care for once patients leave hospital.
A similar framework is needed for traumatic brain injury patients. Patients now receive excellent hospital care, in specialist major trauma centres. Life-saving treatments are delivered by highly skilled clinical teams. However, there is a huge drop-off in their care once they leave hospital. Very limited rehabilitation services are available, there is high geographical variation in availability, and the pathway to finding and accessing any available services is obtuse and tortuous. People struggle on their own, often failing to cope and losing jobs, university places, homes and personal relationships.
There is an assumption that patients who can walk out of hospital are fully recovered. This is often not the case. Their ‘hidden’ disability is real, but often masked by their apparent physical recovery.
We know that intensive rehabilitation can be of real benefit (6). But there are no coordinated systems in place to ensure that every survivor has access to specialist post-hospital care. Over the last decade, survival rates from traumatic brain injury have increased. However, the long-term care that is available for traumatic brain injury survivors remains inadequate. These patients are as capable of rehabilitation and regaining of function as any other neurological condition. We have got much better at saving lives, but not much better at restoring lives.
We need a network of rehabilitation centres, led by traumatic brain injury specialists. This could be delivered through a national framework, which sets the standard for post-hospital care in traumatic brain injury.
The cruel nature of brain injury is that traumatic brain injury patients, with their cognitive and psychological difficulties, are often the least able to advocate for themselves. We hope that you will be the advocate for them, at the time when they need it the most.
1 : British Heart Foundation Cardiovascular Disease Statistics 2014
3: Whitnall L, McMillan TM, Murray GD, Teasdale GM. Disability in young people and adults after head injury: 5-7 year follow up of a prospective cohort study. J Neurol Neurosurg Psychiatry. 2006;77(5):640-5.
4: Faul M, Xu L, Wald M, Coronado V (2010) Traumatic Brain Injury in the United States: Emergency Department Visits, Hospitalizations and Deaths 2002–2006. In: Centers for Disease Control and Prevention, editor. Atlanta (GA).
5: Gustavsson A, Svensson M, Jacobi F, Allgulander C, Alonso J, Beghi E, et al. Cost of disorders of the brain in Europe 2010. Eur Neuropsychopharmacol. 2011;21(10):718-79.
6: Malec JF and Kean J. Post-Inpatient Brain Injury Rehabilitation Outcomes: Report from the National Outcome Info Database. Journal of Neurotrauma 2016; 33: 1371-1379
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