TEONÉ BURRIDGE

Sir Chris Bryant

House of Commons

London

SW1A 0AA

Dear Sir Chris Bryant, 

I am writing to you, the Chair of the All-Party Parliamentary Group on Acquired Brain Injury (ABI), to discuss rehabilitative psychological support. ABIs are a leading cause of death and disability. Every 90 seconds, someone from the UK is admitted to hospital with a brain injury, costing £15 billion annually (UKABIF, 2024a). Neurosurgical advances are increasing the number of ABI survivors, hence increasing the need for rehabilitation (Awuah et al.,2024; McGregor et al., 1997). I want to thank you for drawing attention to what you describe as an “invisible epidemic” (UKABIF, 2024b). However, my specialisation in Medical Anthropology at the University College London and my personal experience illuminates the severe neglect of psychological provisions. I believe that neurorehabilitation services reinscribe socioeconomic injustices through an absence of psychological interventions. 

In September 2023, my father had an intracranial aneurysm. This left him partially paralysed, affected his comprehension, and resulted in a cranial deformity. The damage is long-term, and he is dependent upon carers who help with essential bodily functions. My father was lucky enough to be treated in one of the best NHS Neurological Critical Care Units (NCCU), where he underwent extensive brain surgery. He remained in a coma for three weeks and was provided with around-the-clock care. However, after he was considered noncritical, I witnessed a steep decline in institutional care, both in hospital and post-discharge. I had no choice but to meet this with an increase in familial care. Although no longer comatose, my father was semi-conscious, non-verbal and was fitted with a tracheostomy. I spent hours repositioning, washing, massaging, pushing a small water-soaked sponge around his mouth, and communicating his needs. However, I could not always advocate on his behalf. His neglect became undeniable when I found preventable ammonia burns on his body from hours of lying in his urine. Like other ABI patients; my father’s physical suffering was accompanied by an unforeseeable destabilisation of his life trajectory. This is what widely known medical anthropologist Cheryl Mattingly (1994) describes as ‘narrative rupture’. 

The rehabilitation post-code-lottery

Clinical time is predominantly characterised by suffering and re-establishing a coherent life plot is central to a meaningful life (Mattingly, 1994). For ABI survivors, this is achieved through rehabilitation that re-orients the patient towards the future. As discussed with my father, those suffering largely exist in relation to a resolution. Rehabilitation services engender hope. However, many survivors are held to ransom by the ‘post-code lottery’ of rehabilitation services in the UK (McGregor et al., 1997; Newton & Owusu, 2022). This is what Singer et al. (2017) point to as a social condition that expedites ill-health. Such conditions encourage ‘syndemic’ interactions wherein the co-present interactions of multiple health issues worsen one another. People are forced to opt for private interventions that offer better psychological and physiological support, thus disenfranchising lower-income individuals who are predisposed to mental health problems that exacerbate their ABIs (McGregor et al., 1997). Many people become physiologically and financially reliant upon public services. Syndemic interactions typically result in disease clustering and socioeconomic injustices. Hence, current rehabilitation services afflict those who need them most. Many cannot arrange rehabilitation for themselves, especially in early stages of recovery when it is most effective (Nielsen et al.,2022). The rehabilitation post-code-lottery delineates a hierarchical value on human life (Fassin, 2007).

What has been done to address this?

In December 2021, the Government agreed to implement an ABI strategy following your campaign and securement of a ‘Private Members’ Bill’ (UKABIF, 2024a). This was followed by your call for evidence in March 2022, aiming to collate information and inform the development of a cross-departmental ABI strategy (GOV.UK, 2024). A draft strategy was produced but did not address the needs of those participating in the call for evidence. While a bridging document has been suggested, there is nothing within this that guarantees ABI rehabilitation. Many people who made decisions about the strategy are no longer in parliament. It appears that this has become a political football. Yet, as you are aware, this is not a game.

Critical psychological support

In disregard to the scientific measurability of psychological techniques, mental health interventions are treated as secondary to technological (biomedical) interventions (Green & Brock, 2000). Although categorised as a physical affliction, ABIs distinctly require psychological rehabilitation. A lack of appetite is symptomatic in ABI survivors. Since the removal of the nasogastric tube, my father has struggled to consume enough calories to complete physiotherapy, reducing the chances of remobilisation. Biomedicine questions whether a patient can eat. From a psychological perspective, it becomes a question of whether he will eat. The onus of optimal recovery falls outside of the biomedical purview. When ABI survivors are considered non-critical, their psyche remains critical to recovery. Hence, my father’s psyche not only expedites his recovery but also underpins it. According to revered medical anthropologist, Arthur Kleinman, biomedicine operates within an economic framework that limits the provision of non-biomedical care (Kleinman, 2012). Funding physiotherapy for an individual who is unable to eat due to depression is a waste of resources. After eighteen weeks in a hospital with no rehabilitation access, my father was “lucky” enough to be given twelve weeks of funding for an award-winning rehabilitation centre. However, he expressed anger and suicidality when told to eat. At this point, my father had no prospect of resolution, as he was not receiving psychological support (Mattingly, 1994). However, psychological support is a necessary step to ensure the efficacy of physiotherapy. This misuse of funding is reflective of a broader, biomedical disregard for the psyche. The centre curtailed his stay at eight weeks because he was not improving through physiotherapy. I appealed, explaining that he needs psychological intervention to underpin physiological progression. The panel stated that psychological considerations would not be made. 

My father is now indefinitely held in an elderly care home at age fifty-nine. Since his initial hospital admission, he has endured another bleed and several seizures and has lost over half his body weight. The care home addresses essential hygiene; however, rehabilitation needs are neglected. The prospect of NHS rehabilitation had become a dangerous waiting game. My father had gained recognition of his cranial deformity, a large, bowl-shaped cavity on the right of his head. Biomedical professionals consider this a cosmetic issue. Although inevitable, surgery is indefinite. My father’s perception of himself as unattractive and disabled is only becoming more ingrained as he runs his fingers over the ridges of bone and soft skin and brain tissue in between. Kohn (2000) highlights the effectiveness of psychological considerations for children with craniofacial anomalies. In her ethnography, professionals employed depersonalising language to neutralise the deformity, attaching it to the present moment rather than to the future (Kohn, 2000). This is relevant for ABI survivors, who often have temporary yet long-term deformities. Kohn attributes the efficacy of such encounters to a concept Mattingly (1994) defines as ‘therapeutic emplotment’ (TE). Mattingly defines TE as a negotiation of clinical time wherein the ‘emplotment’ of an individual into a narrative structure, indicates a foreseeable future. She highlights how ABI recovery is socially (re)constructed. Such psychological techniques can ease clinical time by constructing a plot with a beginning (aneurysm), middle (endurance of suffering and rehabilitation), and end (a physically able self without a cranial deformity). This would engender future-oriented meaning that underscores recovery (Heidegger, 1962; Mattingly, 1994). 

The social conditions of the care home interact synergistically with ABIs, expediting his ill health (Singer et al., 2017).  Currently, my father is surrounded by elderly people who do not share the same prospects of recovery. As you can imagine, this diminishes his hope for the future. Given his indefinite relegation to the care home, my father exists as a stranger in a liminal space with little to no social role (Malkki, 2015; Simmel, 1950). His paralysis and care needs confine him to the care home, causing loneliness and a decline in mental health. Owing to a lack of rehabilitation, my father cannot comfortably sit in the communal areas at mealtimes. He does not eat or drink without someone to encourage him. Consequently, he faces malnutrition and the resultant physical and psychological decline. To remedy this, nurses provide him with antidepressants, which, according to him, have already lost their efficacy. In the anthropological literature on care homes, the rapid clustering and copresence of these effects are known as ‘confinement syndrome’ (Reppas-Rindlisbacher et al., 2021). This is a social rather than an individual pathology. Although my father’s mental and physical decline was initiated through his aneurysm, his condition has been worsened by the “spiralling” absent sociality, specifically communal eating. Furthermore, confinement syndrome makes him more vulnerable to other health concerns, such as dementia (HoltLunstad, 2021). Not only would psychological support have helped my father with his appetite, but it would also have provided him with more meaningful and protracted interactions. Confinement syndrome is commonly faced by elderly people, but because of being low-income, my (considered medically young) father had no choice but to be placed in whichever facility had space. Therefore, not only are social pathways the root cause of his decline within the care home, but his low-income status constricts access to better-established facilities that include rehabilitation services. Hence, the consequences of ABIs are worsened through poverty as a barrier to psychological support and subsequent increased appetite and increased physiotherapy. This again serves to reinscribe socioeconomic inequality, reinforcing a hierarchy of whose lives can be risked (Fassin, 2007; Singer et al., 2017). If people who are considered medically young are put into care homes, psychological provision that realigns them with life goals is the least that can be done. 

Living alongside ABIs

Rehabilitation failures place insidious responsibilities upon family caregivers who are inadequately represented (Kleinman, 2012). NHS principles, such as the promise of needs-based provisions rather than income-assessed care, do not align with neoliberal responsibility transfers from the state (NHS) to the individual (patient or family member) (Rylko‐Bauer & Farmer 2002). The absence of psychological support prevents the individual from cultivating their own care, forcing families to ameliorate the limitations of biomedicine. Given that the psyche underpins ABI recovery, my responsibility is extensive. As a family carer, I must nourish, motivate, and 

‘stay strong’ while dealing with the preventable decline of my father. This is both daunting and premature as a twenty-two-year-old reliant on government loans. The syndemic interaction of poverty and mental health bleeds out to relatives who cannot afford their own psychological provisions (Singer et al., 2017). I am an ‘informal volunteer’ wherein my responsibility feels obligatory, yet I perceive my work as guilt-ridden ‘non-action’ because my father makes little progress (Martinez et al., 2011; Seaman, 2018). Such frustrations can lead to relationship breakdowns (Bowen et al., 2018). Therefore, an advocation for better psychological support is done on behalf of ABI patients as well as their family carers. 

Too little too late?

My father’s girlfriend is now scraping the barrel to finance private rehabilitation. After just two weeks, his appetite, mobility, and mood have improved. But there are some things that cannot be gained back. To end the preventable suffering and re-inscription of socioeconomic inequalities among people living with ABIs, I urge you to consider the following in your formulation of the ABI strategy: 

• Reconsideration of what it means to be non-critical for an ABI patient through recognizing the link between psyche, food consumption, and physiotherapy.
• Equal provision of psychological support in the knowledge that it underpins long-term ABI recovery. 
• Consideration of anthropological literature on restructuring clinical time, family caregiving, and synergistic interactions between social and health conditions. 

In the time it has taken you to read this letter, six people have been admitted to a UK hospital with a brain injury. 

“The shock reaction is readily extinguished, and people everywhere seem to have an enormous capacity to absorb the hideous and go on with life and with the terror, 

violence, and misery as usual.” (Scheper-Hughes, 1995:416)

Please, on behalf of those living with the consequences of ABIs, do not let that be you. 

Sincerely, 

Teoné Burridge 

UCL BSc Anthropology Graduate

References 

Awuah, Wireko Andrew, Arjun Ahluwalia, Kwadwo Darko, Vivek Sanker, Joecelyn Kirani Tan, Tenkorang Ohenewaa Pearl, Adam Ben-Jaafar. 2024. “Bridging minds and machines: the recent advances of brain-computer interfaces in neurological and neurosurgical applications.” World Neurosurgery.

Bowen, Ceri, Siobhan Palmer, and Giles Yeates. 2018. A relational approach to rehabilitation: Thinking about relationships after brain injury. Routledge. 

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Singer, Merrill, Nicola Bulled, Bayla Ostrach, and Emily Mendenhall. 2017. “Syndemics and the biosocial conception of health.” The Lancet 389 (10072): 941-950. 

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Image source

Wels, P. (2019). Broken Sand Timer. Pixabay. Retrieved July 14, 2024, from https://pixabay.com/photos/time-hour-hourglass-clock-timer-3961758/.