In this blog, Leeanne MacPherson and Dr Ben Chetcuti from the NHS mental health, alcohol and drug liaison team in Ayrshire and Arran, share their experiences of working with alcohol-related brain damage (ARBD) patients and the various ways these service users can be stigmatised through their treatment journeys.
Leeanne MacPherson’s views
Having worked in the health and social care system for over 25 years, I have supported many individuals with differing needs and requirements, many of whom were residing in the community with alcohol-related brain damage (ARBD).
When I joined the NHS full time in 2014, some of the first patients I cared for were individuals with ARBD. The interesting thing was this was within an inpatient acute psychiatric assessment unit and they were also relatively young (in their mid-fifties). The admissions were prolonged, and all resulted in the individuals being transferred to care home settings that were primarily occupied by older adults who had diagnoses of dementia. Four years after my first encounter with one female patient, she was admitted under the care of my team in a specialist dementia unit which consisted of NHS continuing care beds; these beds require strict criteria for individuals who often experience stress and distress due to their condition and require higher level specialist care. To this day the patient remains in this unit and only now meets the age criteria of ‘older’ (65 years old), meaning that for 11 years many of her needs will have gone unmet within NHS institutions. I naively believed that these were isolated cases and ARBD was rare!
When I moved to my current role working as part of a mental health, alcohol and drug liaison team within the general hospitals, I quickly realised that there were many patients coming through the hospitals with Alcohol Use Disorders (AUD), many of whom were frequent attenders. Professional curiosity led me to question why this was, what was happening and what these admissions looked like. Many of the people being referred to the team are being detoxed from alcohol, receiving any necessary medical treatment and then discharged after a review by our team. At times, cases can be more complex and patients may appear confused, presumably experiencing adverse withdrawals and requiring mental health legislation to ensure safe and effective treatment.
Despite referrals for on-ward support, negative attitudes quickly became apparent to me, including differential treatment to other patients and structural barriers to person centred care, which can be additionally challenging for a patient who is perceived as difficult potentially due to an unidentified cognitive impairment.
As a healthcare professional, stigma does not sit well with me, and it is a real shame that this is still something we are faced with within the services.
Undoubtedly though, most healthcare professionals would strongly deny having ever shown prejudicial or stigmatising behaviours towards patients – stigma is insidious and often appears indirectly but can have devastating and have significant consequences for patients.
From basic attitudes to structural barriers, stigma is threaded throughout our healthcare system and in this case, to the detriment of patients with ARBD.
Language is a huge part of stigmatising behaviour. Medical and nursing notes can include mentions such as ‘known alcoholic’ and requests to move patients to psychiatric units because they are ‘bad not mad’, claiming the patients are aware of their behaviour. Many staff make judgements based on these notes and view a patient’s dependence as ‘self-inflicted’. When this happens, moral judgement gets in the way of medicalising alcohol dependence and allowing the treatment that is needed. However, with a patient who has ARBD the choice is often not theirs to make when their executive function is impaired. This can lead to compassion fatigue, frustration and a lack of empathy for these patients who are admitted frequently. Lack of specialist community supports unfortunately make this unavoidable sometimes.
Substandard care – again this may come from the repeat admissions and frustrations staff experience from this. We have had very real situations when significant concerns have been raised over the capacity of individuals, only to discharge them before assessments can be carried out because ‘that’s just how he is’.
It is no secret that the NHS is under pressure and medical beds are at a premium, however, patients with substance use issues are often the low hanging fruit and first to be moved on and discharged. This may be at the cost of longer treatment with essential vitamins, formal OT assessments and MDT discussions before discharge, all of which may go a long way to offering more support and reducing admission rates.
Diagnostic overshadowing is also a real issue, particularly with a patient who is confused and misattributing this as being due to alcohol withdrawals but could be Wernicke’s Encephalopathy.
Prevention of ARBD is possible through treatment with IV Thiamine or Pabrinex. In every case, the initial treatment of a patient with alcohol dependence should include IV Therapy for the first 3-5 days, however, often if the patient is non-compliant then the treatment is not given.
The complex and unpredictable behaviour of patients with ARBD, which includes confusion, aggression, impulsivity and emotional lability, can prove challenging in a busy acute hospital setting, but it must be acknowledged that it is still a medical issue, and we need more education to support the wider healthcare system to understand this and improve outcomes for these patients.
In summary, healthcare professionals within the acute hospital settings face significant challenges when trying to support individuals with ARBD and stigma further impacts this and can lead to negative outcomes. As a liaison team we are striving to break down these barriers. Our recent work with Carol Mochan MSP to raise awareness has been exciting and a privilege. We will continue to challenge the negative narratives and educate staff on ARBD in various settings – all with a view to one day having a fully functional specialist service delivering the support services that are so very needed for this underrepresented group of patients.
Watch Carol Mochan MSP’s member’s business on a holistic approach to ARBD: Members’ Business — S6M-16291 Carol Mochan: Holistic Approach to Alcohol-related Brain Damage | Scottish Parliament TV
Dr Chetcuti’s views
Stigma and Alcohol-Related Brain Damage (ARBD): A Call for Understanding and Change
Alcohol-Related Brain Damage (ARBD) presents a unique and complex challenge within healthcare systems. This condition, an umbrella term encompassing disorders such as Wernicke’s encephalopathy, Korsakoff’s syndrome, traumatic brain injury, and strokes related to alcohol use, often slips through the net due to systemic gaps in understanding and care. Beyond the medical challenges, the stigma associated with ARBD casts a long shadow over patients and their ability to access timely and appropriate treatment. Addressing this stigma requires a compassionate and multidisciplinary approach, grounded in reflection and a commitment to systemic change.
Understanding ARBD: A Diagnostic and Treatment Challenge
ARBD patients face significant barriers to diagnosis and care, beginning with diagnostic overshadowing. Often presenting for detoxification, these individuals are frequently misdiagnosed as simply having alcohol problems, leading to their physical and neurological issues being overlooked. Brain injuries, strokes, and other medical comorbidities are missed, often due to intoxication at the point of admission.
From a psychiatric perspective, ARBD patients sit in a challenging grey area. While their condition involves brain injury, it is not always classified as a primary psychiatric disorder, making it difficult to determine the best treatment pathway. The lack of understanding about critical interventions, such as the administration of thiamine and vitamins to prevent encephalopathies, further exacerbates the problem. Moreover, the rehabilitation these patients require—both neurological and cognitive—remains largely unavailable in current healthcare frameworks, often leaving them in care homes or long-term facilities where opportunities for recovery are limited.
The Multifaceted Nature of Stigma in ARBD
Stigma surrounding ARBD stems not from malicious intent but rather from misunderstanding. Healthcare professionals dedicate themselves to helping others; their work is driven by compassion and the desire to make a difference. However, the complexity of ARBD, coupled with gaps in education and systemic limitations, creates significant challenges in delivering optimal care.
A key source of stigma is the lack of public understanding about ARBD. Few people are familiar with the condition or its implications, leading to widespread misconceptions. The cognitive and behavioral issues associated with ARBD are often misattributed to patients’ personalities rather than the disease process itself. This misunderstanding is particularly pronounced because many individuals with ARBD appear outwardly cognitively intact, masking their underlying impairments. As a result, their behavioral difficulties are wrongly seen as character flaws or deliberate choices, further marginalizing them and reinforcing stigma.
For healthcare professionals, the challenges associated with ARBD can be overwhelming. These patients require specialized care, such as intravenous vitamins and support during withdrawal, yet the logistical difficulties of providing such care can induce feelings of helplessness. Coupled with fear and uncertainty about how best to treat these individuals, stigma becomes an unfortunate byproduct of systemic issues, rather than the attitudes of any one person.
Breaking Down Institutional Stigma
The stigma associated with ARBD is more than a societal or individual issue—it is embedded within the very fabric of healthcare systems. Current services are not designed to address the diverse needs of this patient population, with care often divided between medical and psychiatric specialties. Patients frequently fall through the cracks, deemed unsuitable for either setting despite their clear need for intervention.
Addressing this institutional stigma requires a shift towards integrated, multidisciplinary care models that bring together expertise from neurology, psychiatry, medicine, social care, and rehabilitation. These services must be tailored to the specific needs of ARBD patients, offering not only immediate medical intervention but also long-term support to enable recovery and reintegration into the community.
A Compassionate Path Forward
The challenges of ARBD demand a thoughtful and compassionate response from healthcare systems, professionals, and society as a whole. Healthcare workers approach their roles with the intention to care and heal, yet gaps in education and services leave them struggling to manage this patient population effectively. By understanding the systemic roots of stigma and addressing them through integrated care and education, we can begin to dismantle the barriers that prevent ARBD patients from receiving the treatment they need. These individuals deserve more than to be seen as the sum of their condition—they deserve the chance to recover, rebuild, and thrive.
SHAAP Blogposts are published with the permission of the authors. The views expressed are solely the authors’ own and do not necessarily represent the views of Scottish Health Action on Alcohol Problems (SHAAP).