Explore the vast range of titles available.

Background: Studies on the experiences of consumers with Motor Neurone Disease Associations at end of life and bereavement are lacking, and their role and capability within the broader sectors of health and disability are unknown. Objectives: To ascertain the experiences and views of bereaved motor neurone disease caregivers with Motor Neurone Disease Associations about service gaps and needed improvements before and during bereavement and to propose a model of care that fits with consumer preferences and where Motor Neurone Disease Associations are effective enablers of care. Methods: A national bereavement survey was facilitated in 2019 by all Motor Neurone Disease Associations in Australia. A total of 363 respondents completed the section on support provided by Motor Neurone Disease Associations. A mixed-method design was used. Results: Respondents were generally positive about support received before bereavement (73-76%), except for emotional support (55%). Positive experiences related to the following: information, equipment advice/provision, advocacy/linking to services, showing empathy/understanding, personal contact and peer social support. Negative experiences included lack of continuity in case management and contact, perceived lack of competence or training, lack of emotional support and a lack of access to motor neurone disease services in rural areas. Suggested improvements were as follows: more contact and compassion at end of life and postdeath; better preparation for end of life; option of discussing euthanasia; providing referrals and links for counseling; access to caregiver support groups and peer interaction; provision of a genuine continuum of care rather than postdeath abandonment; guidance regarding postdeath practicalities; and more access to bereavement support in rural areas. Conclusion: This study provides consumer perspectives on driving new or improved initiatives by Motor Neurone Disease Associations and the need for a national standardised approach to training and service delivery, based on research evidence. A public health approach to motor neurone disease end-of-life care, of international applicability, is proposed to address the needs and preferences of motor neurone disease consumers, while supporting the capability of Motor Neurone Disease Associations within a multidisciplinary workforce to deliver that care.

Background: Family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, an incurable, mostly rapidly fatal neurodegenerative disease, face many challenges. Although there is considerable research on caregiver burden in Motor Neurone Disease/Amyotrophic Lateral Sclerosis, there is less knowledge of the positive aspects of caring. Objective: To explore the experiences of family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, specifically the relationship between positive and negative experiences of caring, and to identify possible ways to better support these caregivers. Methods: Secondary thematic analysis of 24 semi-structured qualitative interviews conducted longitudinally with 10 family caregivers. Interviews explored rewarding and unrewarding aspects of caring. Results: Themes emerged around burden, needs, rewards and resilience. Resilience included getting active, retaining perspective and living for the moment. Burden was multifaceted, including social burden, responsibility, advocacy, ambivalence, guilt and struggling with acceptance. Rewards included being helped and ‘ticking along’. Needs were multifaceted, including social, practical and psychological needs. The four main themes were interrelated. A model of coping was developed, integrating resilience (active/positive), burden (active/negative), needs (passive/negative) and reward (passive/positive). Conclusion: Burden, resilience, needs and rewards are interrelated. Caregivers’ ability to cope with caring for a person with Motor Neurone Disease/Amyotrophic Lateral Sclerosis oscillates between positive and negative aspects of caring, being at times active, at times passive. Clinical implications: Coping is a non-linear process, oscillating between different states of mind. The proposed model could enable clinicians to better understand the caregiver experience, help family caregivers foster resilience and identify rewards, and develop appropriate individualised caregiver support plans.

Background Motor Neurone Disease (MND) leads to muscle weakening, affecting movement, speech, and breathing. Home mechanical ventilation, particularly non-invasive ventilation (NIV), is used to alleviate symptoms and support breathing in people living with MND. While home mechanical ventilation can alleviate symptoms and improve survival, it does not slow the progression of MND. This study addresses gaps in understanding end-of-life decision-making in those dependent on home mechanical ventilation, considering the perspectives of patients, family members, and bereaved families. Methods A UK-wide qualitative study using flexible interviews to explore the experiences of people living with MND ( n  = 16), their family members ( n  = 10), and bereaved family members ( n  = 36) about the use of home mechanical ventilation at the end of life. Results Some participants expressed a reluctance to discuss end-of-life decisions, often framed as a desire to “live for the day” due to the considerable uncertainty faced by those with MND. Participants who avoided end-of-life discussions often engaged in ‘selective decision-making’ related to personal planning, involving practical and emotional preparations. Many faced challenges in hypothesising about future decisions given the unpredictability of the disease, opting to make ‘timely decisions’ as and when needed. For those who became dependent on ventilation and did not want to discuss end of life, decisions were often ‘defaulted’ to others, especially once capacity was lost. ‘Proactive decisions’, including advance care planning and withdrawal of treatment, were found to empower some patients, providing a sense of control over the timing of their death. A significant proportion lacked a clear understanding of the dying process and available options. Conclusions The study highlights the complexity and evolution of decision-making, often influenced by the dynamic and uncertain nature of MND. The study emphasises the need for a nuanced understanding of decision-making in the context of MND.

This perspective paper presents a first-person account of life with motor neurone disease (MND). Through the lens of lived experience, it explores the complex and often prolonged diagnostic journey, shaped in part by the protective grip of denial. This paper then delves into the emotional impact of MND on the individual and their close relationships, capturing the strain on identity and family dynamics. It also highlights the vital role of the multidisciplinary team in providing support throughout the journey. A central focus of the paper is the personal journey of voice banking. It reflects on the restorative experience of reclaiming a pre-disease voice through tools such as ElevenLabsTM. This narrative underscores the critical importance of early intervention and timely access to voice banking, positioning voice not only as a tool for communication but also as a powerful anchor of identity, dignity, and agency. The paper concludes by highlighting key systemic gaps in MND care. It calls for earlier referral to speech pathology, earlier access to voice banking, access to psychological support from the time of diagnosis, and better integration between research and clinical care.

There has been an increase in the use of mechanical ventilation (MV) in motor neurone disease (MND) to alleviate symptoms related to hypoventilation. Little is known about its use at the end of life, and the withdrawal of MV is a challenging topic. A scoping review was conducted to map the existing evidence of ventilation use at the end of life in MND. The Joanna Briggs Institute methodological framework was used, and a total of 31 documents were included in the data extraction. Boarder themes around place, planning, cause and comments on death were identified. Our findings show that the focus of the literature has been on the process of the withdrawal of ventilation, creating the subthemes of timing and reason for withdrawal, along with ethical, emotional, and practical issues, medications used and the time until death. There is a foundation of evidence to guide the process and discuss the ethical and emotional issues of withdrawing ventilation. However, there remains limited evidence from patient and family member perspectives. Importantly, there is almost no evidence exploring dying with ventilation in place, the active or passive decisions around this process, how the interface might impact the dying process, or what families think about this.

Laura Goldstein originally joined the Psychology Department in 1987 at the (then) Institute of Psychiatry, also undertaking clinical work at the South London and Maudsley NHS Foundation Trust. She retired in September 2024.Laura is a Fellow of the British Psychological Society and has undertaken internationally recognised research into the neuropsychological and broader psychological consequences of neurological disorders (especially motor neuron disease and epilepsy) and their comorbidities as well as functional neurological disorder.Recently Laura was involved in evaluating psychoeducational and psychological interventions for people with epilepsy and she ran a large NIHR HTA-funded multicentre randomised controlled trial of cognitive behavioural therapy for patients with dissociative (non-epileptic) seizures (the CODES Trial). She has also been involved in NIHR HTA-funded trials studying the use of Acceptance and Commitment Therapy for people with motor neuron disease (the COMMEND trial) and the use of specialist physiotherapy for adults with functional movement disorder (Physio4FMD) as well as supervising neuropsychological studies in motor neuron disease.Previously, alongside her clinical and research activities, Laura played a major role in the post-qualification training of UK clinical neuropsychologists through leading PG Diploma courses at the Institute of Psychiatry over a 16-year period. Together with Jane McNeil, Laura co-edited two editions of ‘Clinical Neuropsychology. A Practical Guide to Assessment and Management for Clinicians’ (2nd edition 2013; Wiley) as well The Clinical Psychologist’s Handbook of Epilepsy: Assessment and Management, Routledge Press (published in 1997) which she co-edited with Christine Cull.Neuropsychologists’ interest and involvement in service delivery for people with FND have both shown a marked increase in recent years. It is the case, however, that current service provision is less advanced than research and clinical developments in the field. Neuropsychologists, clinical psychologists and other psychotherapists will, however, have a range of skills and expertise to offer to this area of clinical specialty. Indeed. recently the British Psychological Society’s Division of Neuropsychology has outlined a range of potential important contributions that neuropsychologists and other psychological practitioners can make to clinical services for people with FND. Other groups, for example in the USA, have also highlighted how neuropsychologists can contribute to work in this area. The current talk will outline not only the range of FND-related settings in which neuropsychologists/other psychologists can work and their potential roles but will focus in particular on the evidence base which now supports the delivery of different models of psychotherapy, both in terms of individual therapy and as part of a multidisciplinary team, for people with FND. It will also highlight the important role that neuropsychologists can play in the neurocognitive assessment and treatment of individuals with FND and in particular functional cognitive disorder. Other roles for psychologists working with people with FND will be highlighted such as psychoeducation, liaison, consultation, education, and dissemination. The talk will conclude with some thoughts as to suitable staffing levels.

AimsTo establish 14 Key Performance Indicators (KPIs) of clinical care to provide a prospective audit framework to review routinely collected data fields on the Care Audit Research Evaluation (CARE-MND). Based upon Scottish and UK motor neuron disease (MND) standards of clinical care outlined in HIS/QIS Neurological Standards (2009) and NICE MND Guidelines (2016).Methods14 KPI categories of clinical care were reviewed. The completion percentage of 53 fields from CARE-MND were analysed for deceased people with MND (pwMND) diagnosed between 01/01/2015 and 31/12/2018.ResultsThere was a 73% average completion in data capture for deceased patients diagnosed in the specified range for the 14 KPI areas of clinical care.ConclusionsThe introduction of CARE-MND as a research register and tool to support clinical care has resulted in more complete routine data capture of information which can be used to audit and improve delivery of care. The KPI audit framework will be repeated in the future to assess variation in data capture.

Imran was born in Lahore, Pakistan, and later moved with his family to Karachi, where he grew up as one of six siblings. From modest beginnings, his exceptional academic achievements earnt him a place at Dow Medical College. Driven by a dream to work in the UK, he embarked on a journey in the 1980s that saw him contribute to healthcare in various cities. He was staff grade in elderly care for several years before becoming a GP. As a beloved, single handed family doctor in Birmingham, he served his community with compassion and pride for decades. Imran qualified long before “GP with special interest” was a title but he did carry out joint injections which helped several of his patients with mobility problems.

Fungi are important infectious disease-causing agents, but are often overlooked as environmental factors in disease. We review several lines of evidence that point to a potential fungal origin of sporadic amyotrophic lateral sclerosis (ALS), the most common form of motor neurone disease. Approximately 90% cases of ALS are sporadic, and the aetiology of sporadic ALS is still unknown. We have previously postulated that grass or soil-associated fungal infections may be a leading cause of sporadic ALS. Herein we extend this proposal to water-associated fungi. A wide variety of fungi have been reported in drinking water including Acremonium, Alternaria, Aspergillus, Cladosporium, Fusarium, Penicillium and Trichoderma. Some of these are known to produce neurotoxic mycotoxins. Despite this, drinking water is not routinely monitored for fungal contamination. Fungal contamination could explain the close correlation between distribution of well water and cases of sporadic ALS in the United States. We propose several mechanisms by which an opportunistic fungal infection from environmental exposure (to water, soil or plants) can lead to long term neuronal degradation resulting in the hallmarks of ALS. If confirmed, the association between fungal infection and sporadic ALS could lead to novel treatment strategies for this progressive and fatal disease.

This study aimed to quantify, characterise and localise motor fatigue in people with motor neuron disease (MND) using a combination of clinical assessments, neurophysiology and muscle phosphorus-31 magnetic resonance spectroscopy (31P-MRS).We quantified fatigability using the fatigue index (FI) in twenty patients and 10 healthy controls. F-wave amplitudes, motor unit number index (MUNIX) and 31P-MRS were acquired pre- and post-maximal voluntary contraction to investigate fatigability at different sites of the motor system (spinal cord, peripheral nerve and muscle, respectively). Between-group differences and associations were assessed using regression models.There were no between-group differences in FI (p=0.115). MUNIX (p=0.008) and f-wave amplitude (p=0.024) declined significantly post-contraction in controls, but not in patients (MUNIX p=0.284, f-wave p=0.264). FI was associated with resting intracellular magnesium (R=0.869, p=0.001, FDR-corrected) in controls, but not patients. Resting magnesium and post-contraction MUNIX decrease were associated with greater fatigue in controls. A decrease in post-contraction f-wave amplitude was associated with greater fatigue in patients, after accounting for denervation (MUNIX) and magnesium.There is a differential response to fatigue in MND compared to healthy controls. Fatigability appears related to spinal excitability (f-waves) in patients, whereas peripheral (MUNIX) and muscular (magnesium) components predominate in healthy controls.