Easy Read materials are sometimes provided by healthcare services to help people with intellectual disabilities to understand written information. This study examined literature on the development, review, regulation, delivery, and impact of Easy Read health information (ERHI) with the aim of elucidating best practice. A systematic review of five bibliographic databases and three grey literature databases was registered, conducted, and synthesised using meta-aggregation. Studies from 2006 onward regarding ERHI for individuals with intellectual disabilities were included. The twenty-nine included studies revealed variability in ERHI development, review, and quality control processes. Individuals with intellectual disabilities valued ERHI and assistance in appraising it, however empirical evidence of ERHI effectiveness was limited. ERHI's empirical evidence base is underdeveloped and largely consists of low-quality research. Subjective and inconsistent application of guidance leads to variable ERHI quality. Standardised resources and rigorous research are needed to evaluate ERHI as a health education intervention.
Wilson, H., Irvine, K., Alexander, R. T. and Mengoni, S. E.
Read researchAdult community intellectual disability services in the United Kingdom (UK) are required to deliver specialist, evidence-based care for a variety of conditions while minimising restrictive practices and reliance on inpatient provision. Care pathway models have emerged as a potential mechanism to reconcile these aims yet remain under-used in care philosophies in intellectual disabilities. We propose a generalisable pathways model for community intellectual disability services and examine its implications for policy, clinical practice, and research. The model integrates care navigation, proportionate specialist input, and defined clinical condition care including behaviours that challenge, mental and physical health, forensics, neurodevelopmental conditions, epilepsy, and dementia within a community-based service architecture. It considers recent focus on digitalsation, prevention, workforce and practice innovation. The model aligns with contemporary policy priorities. We argue that pathway-based care delivery provides a pragmatic and ethically grounded framework for organising services. It supports consistency, integration, and preventative care while reducing reliance on reactive risk-based responses. By synthesising service design principles, core pathway functions, and system interfaces, this paper offers a coherent model for contemporary community intellectual disability services. Further empirical evaluation is required to assess the impact of care pathways on outcomes, patient experience, and cost-effectiveness.
Shankar, R., Sawhney, I., Tromans, S. J., Perera, B., Korb, L., Sheehan, R., Hanna, H., O’Kane, N., DeVilliers, J., Rajagopal, G., Watkins, L., McCarthy, J., Laugharne, R., Purandare, K., Alexander, R., Roy, A., Zia, A., Gangadharan, S. and Hassiotis, A.
Read researchPeople with intellectual disabilities (ID), particularly those with co-existing mental health difficulties, experience health inequalities and premature mortality. Cancer is a prominent cause of mortality, partially due to the difficulties this population faces in accessing screening. This paper explores the rates of colorectal, breast, cervical and prostate screening over a 28-month period within an Enhanced Physical Health Clinic (EPHC) set within a specialist ID psychiatry service in Essex, United Kingdom (UK). We examined completion of, and any barriers to screening among EPHC patients (n = 463), and compared this to population-wide screening data in the UK among people with an ID. The EPHC facilitated support with screening by providing reasonable adjustments, including providing easy-read leaflets or booking appointments. The number of patients eligible for screening was colorectal (n = 83), breast (n = 73), cervical (n = 120) and prostate (n = 50), respectively. In comparison to the population-wide data available for people with ID, successful screening by EPHC patients was significantly higher for colorectal (93% vs. 78%), breast (74% vs. 53%) and cervical screening (40% vs. 31%). While there is no national prostate screening programme to generate comparison figures, 98% of those eligible accessed screening through the EPHC. These results suggest that the EPHC, which operates within a specialist ID psychiatry service in secondary care, is an innovation that may help improve cancer screening rates.
Sawhney, I., Patteril, E., Chester, V., Gale, T., Sathick, M., Zia, A. and Alexander, R.
Read researchThe Royal College of Psychiatrists was established in 1971 with psychiatric training as its core business. Drawing on a feature written by a former president in 2000, this editorial is a reflection on how his predictions played out in the real-life practice of psychiatry and the suggested way forward.
Regi T. Alexander
Read researchThe NHS 2025 Health Plan aims for radical reform but overlooks people with intellectual disability. This editorial highlights critical omissions in policy, services, research and rights protections. Without intentional inclusion, digital and community shifts risk deepening inequality. True progress demands co-produced strategies to ensure equitable care for this vulnerable population.
Shankar, R., Sawhney, I., Tromans, S., Jaydeokar, S., Oodiyor, M., Sheehan, R., Perera, B., Blake, A., de Villers, J., Purandare, K., McCarthy, J., Mukerjee, R. A. S., Laugharne, R. A., Hassiotis, A., Strydom, A., Alexander, R. and Roy, A.
Read researchUnderstanding autism prevalence within the Criminal Justice System (CJS) and forensic settings has implications for identifying clinical/forensic needs, planning responses, potentially improving outcomes. This systematic review aimed to synthesise studies investigating autism prevalence within CJS/forensic cohorts, and the prevalence of CJS/forensic involvement in autistic cohorts. Searches were conducted on 6 June 2023, alongside backward searching and expert consultation. Studies were synthesised narratively with reporting quality appraised. The search yielded 6481 articles. Following duplicate removal, titles and abstracts of 4207 articles were screened; 71 articles were full text screened and 41 met eligibility criteria. Prevalence rates of autism in CJS/forensic settings were examined in 25 studies, varied from 0–60%, with rates of autism higher than the general population prevalence estimate of 1% in 24 of 25 included studies. Prevalence rates of CJS/forensic involvement in autistic populations were examined in 16 studies, with reported rates varying by 3–71%. Studies examining prevalence of CJS/forensic involvement among autistic people indicate a rate of offending at a lower, or equivalent level to comparison samples. However, studies examining autism prevalence within CJS/forensic settings suggest over-representation. Possible explanations fall within three categories: pre-sentencing factors, autistic offender factors or post-sentencing factors. Implications for practice and research are discussed.
Chester, V., Melvin, C., Bunning, K., Alexander, R. and Langdon, P. E.
Read researchEditorial by Verity Chester and Sam Tromans
Chester, V., and Tromans, S.
Read researchEditorial by Verity Chester and Samuel Tromans
Chester, V., and Tromans, S.
Read researchWhile growing evidence highlights the challenges faced by autistic females during diagnostic
assessments, it remains unclear how well this research is applied in clinical practice. This study aimed to gather
consensus among clinicians on recommendations for autism assessments to improve diagnostic validity for cisgendered
females. A three-round Delphi study was conducted with registered healthcare professionals experienced in
conducting autism diagnostic assessments with females. Thematic analysis of Round 1 responses identified five themes: Attributes of the Assessor, Post-Clinical Qualification Education and Learning, Diagnostic Tools, Questions Asked, and Sources of Information. These themes produced 28 statements evaluated in Rounds 2 and 3. Eighteen reached 80% consensus in the final round. Experts emphasized the important of assessors having strong knowledge of research into autism in women, cooccurring conditions, other developmental conditions, and masking. Ongoing professional development on autism in women was considered essential and it was recommended that new assessors shadow female assessments. Experts agreed the ADOS-2 is not always useful for females, whereas screening tools can provide valuable narrative insights, though these need to be interpreted carefully due to potential male bias. Experts supported including more prompts to explore subtle differences in social communication and repetitive patterns of behaviour and stressed the importance of masking behaviours and experiences across different relationships. Masking should also be considered when interpreting informant information. Findings reveal inconsistencies in how clinicians consider sex-related factors in autism assessments, highlighting the need for formal guidance. The next steps will be to develop this guidance, incorporating research evidence, the perspectives of autistic women and girls, and Delphi results. This aims to improve the experience, and accuracy of diagnosis for girls and women undergoing autism assessment, increasing consistency across services, and supporting clinicians.
Trundle, G., Chester, V., Alexander, Z., Morris, P. and Crump, I.
Read researchThe past twenty years, British academic psychiatry has made significant scientific advances in neurosciences, psychopharmacology, imaging and genetics with patients increasingly being involved as research partners. However, this progress has coincided with marked structural deterioration. Despite a 50% expansion in medical school places and rising mental health needs, full-time academic psychiatrists numbers fell from 330 in 2004 to 206 in 2023. This reduction has constrained research capacity, limited educational opportunities, and exacerbated regional disparities. The current academic landscape is precarious. While research-active services deliver demonstrably better patient outcomes and service outcomes (productivity/efficiency), the research workforce remains small and unevenly distributed. Recent calls to action have emphasised how academic psychiatry must be seen as ‘everyone’s business,’ and highlighted its role in fostering critical thinking, high-quality teaching, and impactful research. In future, sustained investment in workforce development, diversity, and infrastructure is essential. Emerging technologies including digital health, artificial intelligence and precision psychiatry offer transformative possibilities. Regional, networked and virtual academic units can democratise participation and broaden engagement. Academic psychiatry must adopt an entrepreneurial mindset, collaborating with diverse stakeholders, including the private sector. This specialty is indispensable for innovation, clinician development and evidence-based compassionate care for our patients but needs to justify it.
Shankar, R., Bowater, L., Laugharne, R., Tracy, D. K., Critchley, H., Young, A. H., Terry, J. R., Bhugra, D. and Alexander, R.
Read researchCare (Education) and Treatment Reviews (C(E)TR) are meetings to review individualized needs of people with intellectual disabilities (PwID) at risk of or currently undergoing psychiatric hospitalization. We aimed to understand C(E)TR impact and effectiveness from professionals working with PwID. An online mixed-methodology survey which included 34 questions (either Likert or free text) was shared with networks including relevant professionals. Quantitative data are presented descriptively. Thematic analysis was conducted on free-text responses. Of 66 people representing multiple intellectual disability teams across the UK, 67% found the C(E)TR process useful, 35% felt C(E)TRs made a difference to their clinical care, while 36% felt it did not. Thematic analysis showed four overarching themesj: processes and structures, recommendations, accountability, and statutory vs. advisory. Clinicians find C(E)TRs useful for their practice but remain concerned about significant clinical risks and service issues beyond their control which C(E)TRs fail to identify.
Amiola, A., Patteril, E., Chester, V., Tromans, S., Triantafyllopoulou, P., Price, J., Purandare, K., Sawhney, I., Courtenay, K., Roy, A., Alexander, R. and Shankar, R.
Read researchIn the United Kingdom (UK) and Ireland, the psychiatry of intellectual disability (ID) is treated as a speciality, with a linked training pathway. This is subsequently linked to dedicated secondary care services, which provide care for those only with ID. This prompts debates around the strengths and weaknesses of specialization, versus mainstreaming, whereby those with ID are supported to access generic services. This chapter describes the care and treatment of those with ID in the UK and Ireland both historically and the present day. Furthermore, research detailing epidemiology, quality of life factors such as employment and social contact, service provision, and the future of care for this population are discussed.
Tromans, S. J., Chester, V., Hiremath, A. and Gumber, R.
Read researchThe Mental Health Bill, 2025, proposes to remove autism and learning disability from the scope of Section 3 of the Mental Health Act, 1983 (MHA). The present article represents a professional and carer consensus statement that raises concerns and identifies probable unintended consequences if this proposal becomes law. Our concerns relate to the lack of clear mandate for such proposals, conceptual inconsistency when considering other conditions that might give rise to a need for detention and the inconsistency in applying such changes to Part II of the MHA but not Part III. If the proposed changes become law, we anticipate that detentions would instead occur under the less safeguarded Deprivation of Liberty Safeguards framework, and that unmanaged risks will eventuate in behavioural consequences that will lead to more autistic people or those with a learning disability being sent to prison. Additionally, there is a concern that the proposed definitional breadth of autism and learning disability gives rise to a risk that people with other conditions may unintentionally be unable to be detained. We strongly urge the UK Parliament to amend this portion of the Bill prior to it becoming law.
Beazley, P., Alexander, R. T., Taylor, J. L., Velani, B., Dewson, H., Shankar, R., Tromans, S. J., Odiyoor, M. M., Hassiotis, A., Roy, A., McKinnon, I., Zia, A., Strydom, A., Keown, P., Perera, B., Khan, M., McCarthy, J., Butler, M., Chester, V., Fitton, L., Chiu, K., Bew, A., Lane, T., Gay, T., and Gay, B.,
Read researchThis study aims to explore an intervention that addresses the physical health inequalities and premature mortality experienced by people with intellectual disabilities and comorbid mental health difficulties. In the UK, physical health care has traditionally been coordinated and delivered through primary health-care settings. There is a case that physical health inequalities for those with intellectual disabilities and mental health difficulties can be reduced further if primary care interventions are supplemented by Enhanced Physical Health Clinics (EPHCs) co-located in mental health outpatient settings.
Sawhney, I., Patteril, E., Alexander, R., Sathick, M., Gale, T., Zia, A. and Chester, V.
Read researchAnticholinergic burden (ACB) is the cumulative effect of taking multiple medications with anticholinergic properties. ACB is associated with polypharmacy, increased comorbidity, and premature mortality in people with intellectual disability (PwID). No clinical standards for ACB monitoring specific to PwID exist, particularly in psychiatric inpatient units where the risk of ACB is highest. We used the ACB Calculator and Anticholinergic Effect on Cognition (AEC) scale to compute ACB scores in two English psychiatric units. We administered the Liverpool University Side Effect Rating Scale (LUNSERS) and Glasgow Antipsychotic Side Effect Scale (GASS) to examine patients’ perception of side effects. Of 19 patients, the ACB Calculator mean was 6.68 and AEC 4.21. The LUNSERS mean was 22.72 (low side-effects) and GASS 9.12 (absent/mild side-effects). Two prescriber groups and two multidisciplinary sessions discussed the findings. Based on our findings, practice/audit recommendations to minimize ACB for PwID in psychiatric inpatients are suggested.
Tharian, R., Hicks, M., Sahadevan, S., Patteril, E., Chester, V., Alexander, R., and Shankar, R.
Read research