Rohit Shankar

University of Plymouth | UoP · Plymouth University Peninsula Schools of Medicine and Dentistry

In November 2023, the Department of Health and Social Care published guidance, entitled ‘Baroness Hollins’ Final Report: My Heart Breaks – Solitary Confinement in Hospital Has no Therapeutic Benefit for People with a Learning Disability and Autistic People’. The report's commendable analysis of the problems and identification of the areas where pra...

Background Multidisciplinary care planning for people with intellectual disabilities who engage in behaviours of concern (BoC) is challenging and complex. Effective collaborative understanding and action planning across all stakeholders is essential. Cornwall’s Adult Community Learning Disability Team developed a care planning tool (Connect Behavio...

People with intellectual disability are more likely to experience mental health difficulties, and their treatment responses may differ from those in the general population. This book, written by leading clinical practitioners from around the world, provides comprehensive guidance on prescribing for people with intellectual disability, as well as ge...

Background: People often look online for information about health concerns, but the vast amount of available and unregulated information can cause misinformation and potential harm. Health recommender systems (HRSs) can address this issue by recommending personalised health information. Previous research has evaluated individual systems, but there...

Epilepsy is a common condition in the population of people with intellectual disability and for many proves intractable. Over the last 20 years a host of new antiseizure medications (antiepileptics) have been introduced to the market, and the evidence base to support their use in people with intellectual disability is reviewed. This will aim to cov...

Autism Spectrum Disorders (ASDs) are a group of severe developmental and neuropsychiatric disorders usually apparent by the age of three. Autism, referred to as autism spectrum disorder in the 11th revision of the International Classification of Diseases (ICD-11), is a neurodevelopmental condition characterised by persistent deficits in social inte...

Background People with intellectual disability (PwID) and epilepsy have increased premature and potentially preventable mortality. This is related to a lack of equitable access to appropriate care. The Step Together guidance and toolkit, developed with patient, clinical, charity and commissioning stakeholders, allows evaluation and benchmarking of...

Background Outcome measurement is essential to determine the effectiveness of health interventions and improve the quality of services. The interplay of social, individual, and biological factors makes this a complex process in the psychiatry of people with intellectual disability (PwID). Aim Review of outcome measures which are validated in PwID...

This editorial considers the value and nature of academic psychiatry by asking what defines the specialty and psychiatrists as academics. We frame academic psychiatry as a way of thinking that benefits clinical services and discuss how to inspire the next generation of academics.

Background Medication data are a valuable resource in epidemiological studies. As the most common data collection method of medication data is self‐report, it is important to understand the accuracy of this in comparison with other methods such as dispensing records. The aim of this study was to compare the agreement between two different sources o...

Background: Sudden Unexpected Death in Epilepsy (SUDEP) is a leading cause of mortality among people with epilepsy (PWE). Risk factors such as increased seizure frequency, drug-resistant epilepsy, and early epilepsy onset are well recognised. However, little evidence of the role of seizure severity, specifically Status Epilepticus (SE) on SUDEP ris...

Background Adults with learning disability face multiple adversities, but evidence on their needs and primary care experiences is limited. Aim To compare the characteristics and primary care experiences of adults reporting learning disability with those who did not. Design and setting An analysis of the 2022 General Practice Patient Survey, a nat...

Background People increasingly rely on online health information for their health-related decision-making. Given the overwhelming amount of information available, the risk of misinformation is high. Health recommender systems, which recommend personalised health-related information or interventions using intelligent algorithms, have the potential t...

Background: Epilepsy prevalence in sub-Saharan Africa is high with a significant treatment gap. In this context, epilepsy presents substantial challenges to effective and safe reproductive and maternal healthcare. To improve this, it is important to understand the views and perceptions of healthcare professionals delivering epilepsy care to this po...

Communication can be a challenge for a significant minority of the population. Those with intellectual disability, autism, or Stroke survivors can encounter significant problems and stigma in their communication abilities leading to worse health and social outcomes. SpeechMatch (https://www.speechmatch.com/) is a digital App which is a pragmatic mo...

Introduction: The aim of the paper is to establish the requirements and methodology for the development and implementation of a recommender system for mental health apps to support patients in self-managing their mental health while awaiting formal treatment. Methods: The system was developed using an algorithm-based approach, including: (1) user n...

Introduction: There is increased focus on the negative impact of the overprescribing of medication, specifically psychotropic medication, including anti-seizure medications (ASM), in people with Intellectual Disability (ID). This is particularly important for the older adult population, where multi-morbidity and polypharmacy are more common. ASMs...

Aims NHS England's ‘Transforming Care’ initiative introduced care and treatment reviews (CTRs) for adults with intellectual disabilities and/or autism to avoid inpatient admissions, improve inpatient care quality and support timely discharge. CTRs are completed by an independent panel including an expert by experience, a clinician, and the commissi...

It could be argued that perhaps one of the greatest advances in the management of epilepsy, alongside the growth of genetics, antiseizure medication, and surgical options, has been the recognition of the importance of the coexisting cognitive, psychological and psychiatric, and psychosocial conditions. This book brings together leaders in the field...

Background:Sublime is a centuries old concept of emergent experience arising from immense and threatening awareness provoked by overwhelming fear and dread when faced with an incomprehensible situation as is common to autistic people. Extended Reality (XR) technologies have been used since the mid-1990s, in regulating emotions, behaviour and suppor...

Valproate is the most effective medication for generalised epilepsies, and several specific epilepsy syndromes. For some people, it will be the only medication to establish seizure remission, and withdrawing it carries risks of seizure recurrence and Sudden Unexpected Death in Epilepsy (SUDEP). It is also of proven efficacy for bipolar disorder and...

Background and purpose Sudden unexpected death in epilepsy (SUDEP) is a leading cause of epilepsy mortality. All international guidance strongly advocates for clinicians working with people with epilepsy (PWE) to discuss SUDEP. Clinician views working with PWE in the UK and Norway on SUDEP counselling are compared. Methods A cross‐sectional online...

Sudden unexpected death in Epilepsy (SUDEP) is one of the leading causes of death in people with epilepsy (PWE). Awareness and taking adequate preventive measures are pivotal to reducing SUDEP. Nearly 80% of PWE live in lower-middle-income countries (LMICs) such as India where for many, epilepsy management is by psychiatrists. To evaluate the knowl...

Objective This study was undertaken to validate a set of candidate biomarkers of seizure susceptibility in a retrospective, multisite case–control study, and to determine the robustness of these biomarkers derived from routinely collected electroencephalography (EEG) within a large cohort (both epilepsy and common alternative conditions such as non...

Background Brain network analysis is an emerging field of research that could lead to the development, testing and validation of novel biomarkers for epilepsy. This could shorten the diagnostic uncertainty period, improve treatment, decrease seizure risk and lead to better management. This scoping review summarises the current state of electroencep...

Background A quarter of People with Intellectual Disabilities (PwID) have epilepsy compared with 1% of the general population. Epilepsy in PwID is a bellwether for premature mortality, multimorbidity and polypharmacy. This group depends on their care provider to give relevant information for management, especially epilepsy. There is no research on...

Background: People with epilepsy are at increased risk of multiple co-morbidities that may influence risk of adverse outcomes including impact on quality of life and premature mortality. These risk factors include potentially modifiable clinical characteristics associated with sudden unexpected death in epilepsy (SUDEP). For services to tackle risk...

Background After the rapid implementation of digital health services during the COVID-19 pandemic, a paucity of research exists about the suitability of remote consulting in people with intellectual disabilities and their carers, particularly for neuropsychiatric reviews. Aim This study examines when remote neuropsychiatric routine consulting is s...

Background Recovery colleges provide personalised educational mental health support for people who self-refer. The research evidence supporting them is growing, with key components and the positive experiences of attendees reported. However, the quantitative outcome evidence and impact on economic outcomes is limited. Aims To evaluate the impact o...

Background Constipation is overrepresented in people with intellectual disabilities. Around 40% of people with intellectual disabilities who died prematurely were prescribed laxatives. A quarter of people with intellectual disabilities are said to be on laxatives. There are concerns that prescribing is not always effective and appropriate. There ar...

People with Intellectual Disability (ID) were more likely to contract COVID-19 infection and more likely to die from the consequences. However, there is no evidence on the long-term impact of COVID-19 infection in people with ID. Post-Covid Syndrome (PCS) is an established diagnosis that requires specialist clinical support. To date there is no dat...

Background We are a research team of clinical, academic and advocacy‐based researchers with and without learning disabilities, working on the Humanising Healthcare (for people with learning disabilities) project. The project is dedicated to finding and sharing healthcare practices that enhance the lives of people with learning disabilities. As part...

Epilepsy is one of the most common neurologic conditions. Its clinical manifestations are not restricted to seizures but often include cognitive disturbances and psychiatric disorders. Prospective population-based studies have shown that people with epilepsy have an increased risk of developing mood disorders, and people with a primary mood disorde...

Background One-third to half of people with intellectual disabilities suffer from chronic constipation (defined as two or fewer bowel movements weekly or taking regular laxatives three or more times weekly), a cause of significant morbidity and premature mortality. Research on risk factors associated with constipation is limited. AimsTo enumerate r...

Introduction: Fragile X syndrome (FXS) is the most common inherited cause of Intellectual Disability. There is a broad phenotype that includes deficits in cognition and behavioral changes, alongside physical characteristics. Phenotype depends upon the level of mutation in the FMR1 (fragile X messenger ribonucleoprotein 1) gene. The molecular under...

Background The frequent prescribing of psychotropics and high prevalence of polypharmacy among older adults with intellectual disabilities require close monitoring. AimsTo describe change in prevalence, predictors and health outcomes of psychotropic use during the four waves (2009/2010, 2013/2014, 2016/2017, 2019/2020) of the Intellectual Disabilit...

Background A third of people with epilepsy are drug resistant. People with drug-resistant epilepsy (DRE) have a higher risk of mortality and physical injuries than those who respond to anti-seizure medication (ASM). This study describes patient characteristics, comorbidities, and mortality in people with DRE in the UK. Methods The Clinical Practic...

Background People with intellectual disabilities (ID) die on an average 20 years earlier to the general population. They have higher rates of multimorbidity and polypharmacy. Around 25% of people with ID report chronic constipation. The England Learning Disabilities Mortality Review found that nearly 25% of deaths identified constipation as a long‐...

Post-traumatic stress disorder (PTSD) is an anxiety condition caused by exposure to severe trauma. It is characterised by nightmares, flashbacks, hyper-vigilance and avoidance behaviour. These all lead to impaired functioning reducing quality of life. PTSD affects 2-5% of the population globally. Most sufferers cannot access effective treatment, le...

Abstract Background: The Draft Mental Health Bill proposes removal of both intellectual disability and autism from Section 3 of the Mental Health Act for England and Wales (MHA). This would lead to people with intellectual disability (PwID) and/or autism could not be detained beyond 28 days, in the absence of diagnosed co-occurring mental illness....

Widespread, and sometimes inappropriate use of psychotropics in adults with intellectual disability has been an international concern. These medicines have been used to treat mental health conditions, but also, controversially, some types of behaviours not necessarily associated with the diagnosis or in the absence of a relevant diagnosis. Results...

Background Around 2% of the population have intellectual disabilities. Over one-third people with intellectual disabilities (PwID) present with ‘challenging behaviour’, which nosologically and diagnostically is an abstract concept. Challenging behaviour is influenced by a range of bio-psycho-social factors in a population, which is unable to suitab...

Intellectual disability (ID) is a lifelong neurodevelopmental condition involving deficits in both intellectual and adaptive functioning, with onset during the developmental period (from birth to 18 years of age). Individuals with ID experience a greater burden of co-occurring physical and mental illness compared to the general population, and freq...

Background The study aims to understand system barriers to research participation for people with intellectual disabilities. Methods A mixed-methods approach examined the inclusivity of people with intellectual disabilities (IDs) in a random sample of National Institute for Health and Care Research (NIHR) studies conducted in 2019–2020. An online...

Background: Approximately one quarter of people with an intellectual disability (PwID) have epilepsy of whom nearly three-quarters are pharmaco-resistant. There are higher reported neuropsychiatric side-effects to anti-seizure medication (ASM) in this group. Levetiracetam (LEV) is a first-line ASM with a stronger association with neuropsychiatric...

Aims Racial microaggressions occur when subtle or often automatic exchanges of aversive and covert racism are directed towards people identifying as racialized groups. Consequently, affecting individuals' mental and physical health. Healthcare professionals are a vulnerable group to the effects of racial microaggressions, given the high prevalence...

Background There is a bi-directional relationship between seizures and substance misuse, i.e., alcohol and recreational drugs. Seizures and substance misuse are recognised separately to influence increased emergency department (ED) admissions and early death. There is however no understanding of the cumulative influence of these matters on repeat E...

Abstract Purpose This commentary explores the challenges and themes enumerated by the associated article “Why am I still in hospital? Evaluation of delayed discharges from two learning disability assessment and treatment units in England”. This commentary broadens and outlines the research’s background, premise and potential impact. This paper aims...

Background: Nearly a quarter of people with intellectual disability (ID) have epilepsy with large numbers experiencing drug-resistant epilepsy, and premature mortality. To mitigate epilepsy risks the environment and social care needs, particularly in professional care settings, need to be met. Purpose: To compare professional care groups as rega...

Background: Conducting electroencephalography in people with intellectual disabilities (PwID) can be challenging, but the high proportion of PwID who experience seizures make it an essential part of their care. To reduce hospital-based monitoring, interventions are being developed to enable high-quality EEG data to be collected at home. This scopi...

Background: The Health of the Nation Outcomes Scales for people with Learning Disabilities (HoNOS-LD) is an 18-item measure which provides a structured and standardized approach to rating various clinical and psychosocial outcomes and has been in use nationally since 2002. Aims: To revise and improve the HoNOS-LD's utility in contemporary intell...

People with intellectual disabilities (PwID) have a bidirectional relationship with epilepsy. Nearly 25% of PwID have seizures and 30% people with epilepsy are thought to have a significant intellectual impairment. Furthermore, 70% of PwID are thought to have treatment‐resistant epilepsy. In the United Kingdom, antiseizure medications (ASMs) are th...

Almost a quarter of people with intellectual disabilities have epilepsy. This life-long condition adversely affects their health, safety and well-being and carries an increased risk of sudden unexpected death in epilepsy (SUDEP) in this population. This commentary considers what not only health and social services but also communities and people wi...

Background: People with intellectual disabilities (PWID) are at six times higher risk of death due to COVID-19. To mitigate harm, as a high-risk group, significant social changes were imposed on PWID in the UK. Alongside these changes, the uncertainty of the pandemic influence, caused PWID and their carers to encounter significant stress. The evid...

Background: Women with epilepsy (WWE) are vulnerable in pregnancy, with increased risks to mother and baby including teratogenic risks, especially from valproate. The free EpSMon mobile-phone app allows self-monitoring to afford patient-centred feedback on seizure related risks, such as sudden death in epilepsy (SUDEP) to its users. We sought to g...

Background People with epilepsy (PWE) and people with intellectual disabilities (ID) both live shorter lives than the general population and both conditions increase the risk of death further. We aimed to measure associations between certain risk factors for death in PWE and ID. Methods A retrospective case–control study was conducted in ten regio...

There is higher prevalence of epilepsy and SUDEP in people with intellectual disability (PwID) compared to general population. Accurate seizure recording particularly at night can be challenging in PwID. Neuro Event Labs seizure monitoring (Nelli) uses high-quality video based artificial intelligence to detect and record possible nocturnal seizures...

Background: Constipation is common in children with intellectual disabilities and/or autism, but poorly researched. This study looks to understand parental knowledge, attitudes and management practices towards constipation in children with intellectual disabilities and/or autism. Methods: A cross-sectional online survey developed with patient fa...

Introduction The PERMIT study is the largest pooled analysis of perampanel (PER) clinical practice data conducted to date. Methods This post-hoc analysis of PERMIT investigated the effectiveness, safety and tolerability of PER when used as early add-on therapy (after failure of one or two previous antiseizure medications) in comparison with late a...

Background: Epilepsy is a common neurological disorder which frequently presents with co-morbid physical health conditions, including constipation. However, the nature of the relationship between the two conditions has not been well defined. Aim: To quantify constipation’s relationship with epilepsy and anti-seizure medication (ASM). Method: A scop...

Background: Brain in Hand (BIH) is a UK-based digital self-support system for managing anxiety and social functioning. Aims: To identify the impact of BIH on the psychological and social functioning of adults with autism. Method: Adults with diagnosed or suspected DSM-5 (level 1) autism, identified by seven NHS autism services in England and W...

Background A retrospective, multi-site case control study was carried out to validate a set of candidate biomarkers of seizure susceptibility. The objective was to determine the robustness of these biomarkers derived from routinely collected EEG within a large cohort (both epilepsy and common alternative conditions which may present with a possible...

Purpose Nearly a quarter of people with Intellectual disability (PwID) have epilepsy. Many have seizures across their lifetime. In the UK supporting their epilepsy linked risks and needs, particularly in professional care settings and in the community, requires significant social care input. Therefore, the interface between social and health care s...

Background: Overprescribing of off-licence psychotropic medications, particularly antipsychotics, for challenging behaviours in people with intellectual disabilities without a psychiatric disorder is a significant public health concern. In the United Kingdom, the National Health Service England launched an initiative in 2016, 'STopping Over-Medica...

Antiseizure medications (ASMs) are the second most widely prescribed psychotropic for people with intellectual disabilities in England. Multiple psychotropic prescribing is prevalent in almost half of people with intellectual disabilities on ASMs. This analysis identifies limited evidence of ASM benefit in challenging behaviour management and sugge...

The draft Mental Health Bill, which amends the Mental Health Act 1983 for England and Wales, proposes protections for people with intellectual disability and/or autism (ID/A) to prevent detention in hospital in the absence of mental illness. This editorial critically appraises the positive impact and unintended consequences of the proposed reforms...

Sudden Unexpected Death in Epilepsy (SUDEP) is a major concern for people with epilepsy, their families, their care givers, and medical professionals. There is inconsistency in the SUDEP counselling doctors provide, compared to what is recommended in clinical guidelines. Numerous national and international surveys have highlighted how epilepsy prof...

Background The media are an important source of information on mental health. They are often implicit in reinforcing negative stereotypes of people with mental health problems. There are no studies in German-speaking countries or Russia on media attitudes to mental health and mental health professionals’ (MHP) attitudes to the media. Aims This stu...

International current best practice recommends the discontinuation of antipsychotics for challenging behaviours in people with intellectual disabilities (ID), due to lack of evidence of efficacy and risks of harmful side-effects. In clinical practice, discontinuation may be difficult. The aim of this study was to gain insight into prescribers’ prac...

Background In recent years, a significant proportion of inpatient facilities for people with intellectual disabilities and/or autism has been de-commissioned in England, This has resulted in individuals with intellectual disabilities being sent to distant hospitals far away from their families and carers leading to challenges in follow-up, communit...

People with intellectual disabilities (PwID) are frequently prescribed long-term antipsychotics for behaviours that challenge (BtC) despite the lack of proven effectiveness and the increased risks for side effects of these medications in this population. National and international good clinical practice guidelines recommend deprescribing antipsycho...

Background Psychological stress has an established bi-directional relationship with obesity. Mindfulness techniques reduce stress and improve eating behaviours, but their long-term impact remains untested. CALMPOD (Compassionate Approach to Living Mindfully for Prevention of Disease) is a psychoeducational mindfulness-based course evidenced to impr...