This week is Action for Brain Injury Week, an event that takes place every year, highlighting different aspects of brain injury and its impact. Acquired brain injury is the leading cause of death and disability for people aged under 40 in the UK and a new report published by the United Kingdom Acquired Brain Injury Forum (UKABIF) reveals the economic costs to the UK of ABI are an estimated £43.0bn annually1.
Action for Brain Injury Week is spearheaded by Headway, a UK-wide charity that works to improve life after acquired brain injury (ABI) by providing vital support to survivors and families through support and information services. This year the focus is ‘on a good day’ and draws awareness to the vacillating needs and experiences of those living with the consequences of brain injury which can make life feel unbearable one day and filled with hope and optimism on another.
As co-chair of Anchor Point, a national organisation driving change for #FamiliesAfterABI I am particularly drawn to Headway’s recent survey results where 67% of carers have had to change their life goals because of the injury and 70% of brain injury survivors and carers report that their mental health is worse after brain injury. Furthermore 73% felt their relationships were worse on a bad day in contrast to 66% who felt relationships were better on a good day2. This suggests that living with brain injury symptoms is complex and constantly changing and this has consequences for family members. The new report by UKABIF has estimated the cost of these consequences on family members, both in terms of life satisfaction and lost productivity.
“The total cost associated with loss of life satisfaction amongst carers of people with ABI is estimated to be £47m per year of caring”
“There is also a large cost of £4.9bn incurred because individuals and informal carers are out of the labour market”
As an academic researching in this field, this understanding is not new and I, and my colleagues, are working together to improve the landscape for families who are often hidden, ignored, undervalued and dismissed when it comes to both their contribution to the recovery of the injured person but also in their own right as someone who is affected by the enduring consequences of brain injury.
This leads me to want to critically unpack a recent article in the New England Journal of Medicine Catalyst Innovations in Care Delivery3, which calls for a paradigm shift in the way we treat carers and family members and the troubling assumptions behind this article in the hope of broadening the debate on what families need after ABI.
The article starts by highlighting an opportunity to expand the definition of the healthcare workforce to include informal caregivers such as family members, friends, and volunteers. It correctly identifies their contributions as critical yet often unrecognised. However, while the gesture toward inclusion might sound progressive, simply adding informal carers to the workforce does nothing to address the deep structural inequities they face, particularly for families affected by ABI.
As co-chairs of Anchor Point, Dr Aly Norman, Associate Professor of Psychology University of Plymouth, and I have been engaged in practice, research and advocacy for families living with ABI for over two decades. We’ve seen, heard, or lived the devastation wrought by brain injury, not only in its immediate aftermath, but in the years of sustained, unsupported caregiving that follow. We have witnessed the secondary trauma of navigating health and social care systems that systematically marginalise, dehumanise, and exploit family members, often to the point of physical and emotional exhaustion.
While the article is likely well-intentioned, it perpetuates the longstanding neglect of this population by failing to acknowledge carers as people with needs, rights, and lives of their own. It frames them as adjuncts to the system, rather than as individuals worthy of care, protection, and dignity in their own right.
The article states that family carers usually provide more hours of support than paid professionals. Of course, this is true but this informal ‘workforce’ do so without the protections that being in a ‘paid workforce’ allows. This includes, primarily a choice to work, the freedom to change our working environment and conditions affords us a privilege that is not available for family members. This ‘informal workforce’ is not able to benefit from employment rights such as sick pay, pensions, annual leave, occupational health. They do not ‘handover’ caring responsibilities to the next shift, they are no psychological safety nets, no debriefs after traumatic experiences or continuous professional development nor clinical supervision to help them cope with the complexity of their work. Informal carers are not a ‘workforce’ this is unpaid labour, extracted from people who love someone, and who too often pay for that love with their health, careers, identities, and futures.
The article notes that informal carers “tend to know” their loved one’s preferences. This hedging language is not only inaccurate but also patronising. Family members are often the only people who know what is “normal” and what is not. Their expertise should not be a footnote. It should be the foundation of care planning. Recognising their contributions without actually listening to them reinforces the very marginalisation the article claims to address.
While it is commendable that the article cites the staggering £162 billion saved by unpaid carers in the UK, it fails to interrogate the ethics of a system that relies so heavily on this unpaid, unsupported labour. When carers “rely on instincts and love rather than tools and education,” it is not a quaint anecdote, it is a damning indictment of policy failure.
The article goes on to discuss the importance of education, in the same empowering style of patient education.
“By providing carers with the right education tools, we’re not just filling gaps; we’re unlocking this hidden workforce.
Of course, education is essential in this population. But as our research and understanding of the lived experience shows, no training course in ‘how to care for your loved one’ can prepare someone for the long-term psychological, relational, and existential impacts of ABI on themselves. No hoist training at discharge will teach someone how to navigate ambiguous loss, disenfranchised grief, or post-traumatic stress, all of which are common among family members of those with ABI. Education alone cannot solve the wholesale neglect of responsibility by state and wider society.
This brings me to perhaps the most dangerous part of the article, the framing of informal carer education as a solution to our staffing crisis.
“Imagine scaling this kind of training across millions of caregivers. This is a small change, empowering informal carers with knowledge and tools, but it could create enormous efficiencies when delivered at scale.”
This risks further normalising the transfer of professional duties onto unprotected, unpaid individuals. Framing this as "innovation" is deeply troubling. It is not innovation to shift systemic burden onto exhausted families. It is not innovation to celebrate inefficiencies that are solved through unpaid labour.
The article invites us to imagine a world where carers can confidently use a hoist or administer medications.
Imagine a world where that gentleman can confidently use the hoist on day one, or a world where a son knows how to manage medications for his mother, or a neighbor can monitor the early signs of complications. These are all micro skills, but if they were applied consistently, they could transform health care delivery”
I ask us to imagine a world where they don’t have to do it alone. A world where they are listened to, included, and respected. Where they have agency, support, and recognition from society, the state and the health and social care professionals with whom they work alongside. A world where carers and family member’s health and aspirations matter too.
The new report on from UKABIF clearly shows that family wellbeing costs the UK economy in terms of lost productivity, life satisfaction and mental health1. We do need to empower this “hidden workforce”, but not by absorbing them into a system that already fails them. We must empower them as human beings, not just as unpaid extensions of a failing system. We must invest in their wellbeing, protect their rights, and within ABI do this through a lens of trauma. This means redefining care not only in terms of efficiency, but in terms of equity, ethics, and humanity.
Until we do that, this isn’t a paradigm shift, it’s just a repackaging of the same systemic neglect.
1Misak, J. (2025) The Cost of Acquired Brain Injury to the UK Economy, Right to Rehab, United Kingdom Acquired Brain Injury Forum. Available from: https://ukabif.org.uk/resource/resmgr/resources/the_cost_of_acquired_brain_i.pdf, [Accessed on: 22/05/2025]
2Action for Brain injury Week 2024 A life re-written An exploration into the ways in which life can be re-written after acquired brain injury. Available from: https://www.headway.org.uk/media/12168/abi-week-2024-a-life-rewritten-an-exploration-into-the-ways-in-which-life-can-be-re-written-after-brain-injury.pdf [Accessed on: 22/05/2025]
3Shand, J., 2025. Empowering the Hidden Workforce: Redefining Care in Health Systems. NEJM Catalyst Innovations in Care Delivery, 6(1).
