People With Intellectual Disabilities Research Articles

Family quality of life of Ghanaian families raising people with intellectual disability

This study examined the family quality of life (FQOL) of people with intellectual disabilities (PWID). Participants were 176 Ghanaian parents of PWID (mothers = 71.6%). The mean age of the parents was 41.64 years (SD = 9.21 years). The parents completed the Beach Center Family Quality of Life Scale. Descriptive analysis revealed that while the parents of PWID were satisfied with overall FQOL, they were least satisfied with FQOL subdomains including disability-related support, physical/material well-being, and emotional well-being. There was evidence of variabilities within FQOL among families raising PWID. Female parents of PWID reported a higher overall FQOL than male parents. Parents who had male children with intellectual disability reported a higher overall FQOL, compared to those who had female children with intellectual disability. Our findings highlight the need for FQOL support for families of PWID and a need to develop interventions to improve different aspects of FQOL for higher family life satisfaction.

Factors influencing an advanced nursing practice service for people with intellectual disabilities

Abstract Background People with intellectual disabilities (PWID) have less access to preventive healthcare services and are therefore more likely to suffer from certain chronic diseases. Advanced Practice Nursing (APN) can be a suitable approach for this group. However, APN is not yet widespread in all European countries. This intervention focuses on PWID in Hamburg, Germany, who receive case management and prevention focusing on stress, nutrition, mobility and addiction through community-based APN to improve their health status. We aimed to explore the facilitators, barriers and experiences of stakeholders in the context of the APN intervention. Methods We conducted 90 semi-structured problem-centered interviews with PWID, family members, professional caregivers and prevention service providers in 2023 and 2024. We employed convenience sampling. Data were analyzed by qualitative content analysis with mixed inductive-deductive coding using MAXQDA. Results Overall interviewees were satisfied with the intervention. It was reported that the clients exercised more, ate healthier, learned techniques to reduce stress and coped better with addiction. In addition, barriers to preventive services were reduced. We identified factors that positively influenced the success of the intervention: good interprofessional collaboration, successful relationship building with clients, concise goal setting and target group-specific work materials. Barriers were: neglect of the professional care network, difussion of agreements, lack of available prevention services, and communication problems. The results are preliminary. Conclusions This is one of the first evaluation studies of an APN intervention for PWID in Germany. The results show that this new form of care can be implemented if the relevant stakeholders work together and good relationships with the clients are established. Specific goals should be defined and the professional carergivers should develop a community network. Key messages • APN is a suitable approach for disease prevention and health promotion for people with intellectual disabilities, given interprofessional collaboration and a well-established relationship with clients. • Preventive healthcare for the target group is difficult to implement if the stakeholders do not work together and if there are insufficient suitable preventive services available in the community.

Evidencing the challenges of care delivery for people with intellectual disability and epilepsy in England by using the Step Together toolkit.

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 essential epilepsy service provision for PwID in eight key domains, at a care system level. To evaluate care provisions for adult PwID and epilepsy at a system level in the 11 integrated care systems (ICSs) of the Midlands, the largest NHS England region (population: approximately 11 million), using the Step Together toolkit. Post training, each ICS undertook its benchmarking with the toolkit and submitted their scores to Epilepsy Action, a national UK epilepsy charity, who oversaw the process. The outcomes were analysed descriptively to provide results, individual and cumulative, at care domain and system levels. The toolkit was completed fully by nine of the 11 ICSs. Across all eight domains, overall score was 44.2% (mean 44.2%, median 43.3%, range 52.4%, interquartile range 23.8-76.2%). The domains of local planning (mean 31.1%, median 27.5%) and care planning (mean 31.4%, median 35.4%) scored the lowest, and sharing information scored the highest (mean 55.2%, median 62.5%). There was significant variability across each domain between the nine ICS. The user/carer participation domain had the widest variation across ICSs (0-100%). The results demonstrate a significant variance in service provision for PwID and epilepsy across the nine ICSs. The toolkit identifies specific areas for improvement within each ICS and region.

Outcome Measures in intellectual disability: A Review and narrative synthesis of validated instruments.

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). Review of outcome measures which are validated in PwID. A PRISMA-guided review was conducted, using a predefined criteria and a relevant word combination on four databases: EMBASE, Medline, CINAHL and PsycINFO. Each included study was examined for relevance to intellectual disability psychiatry. The psychometric data of each tool was critically assessed. Findings were narratively synthesised. Of 1,548 articles, 35 met the inclusion criteria. Several outcome measures were identified relevant to intellectual disability psychiatry, including tools for challenging/offending behavior, specific neurodevelopmental/clinical conditions such as ADHD, epilepsy, and dementia however, psychometric properties, validity and reliability varied considerably. The tools identified were largely clinician rated, with a dearth of measures suitable for completion by patients or their family carers. Most outcome measures used for PwID lack suitable psychometric properties including validity or reliability for use within the ID population. Of importance, those with alternative expression or are non-verbal have been excluded from the research developing and reporting on measurement instruments. There is an underserved population who risk being left behind in the era of value-based medicine and increasing use of outcome measurement when assessing the effectiveness of healthcare interventions on individual and population levels. This is the first of its kind review in this area.

Vision Care as A Strategy to Prevent Falls Among People with Moderate or Severe Intellectual Disability in the Hostel Setting in Hong Kong

Background: Factors contributing to the higher fall risk among people with intellectual disabilities (PIDs) are complex due to their discrete patterns of multimorbidity. Visual impairment, such as cataract, was common at old age and could be a crucial risk factor. Given the insufficient evidence regarding this relationship, the present study aimed at investigating this issue in a hostel setting in Hong Kong. Methods: This study was conducted in four hostels which served people with moderate to severe intellectual disability. Health data of residents collected in the year of 2022-23 was utilized for the current analysis. Data included fall risk, assessed by Morse Fall Scale, as well as other health conditions (osteoporosis, osteoarthritis, cataract) and demographics (age and gender) among residents. Results: The sample consisted of 199 residents (85 were males and 114 females), with an age range of 22 to 76 years. Around 40% (85; 42.7%) of them aged above 45 years old. Among the whole sample, cataract was the most common health condition and its prevalence reached 27.14%. Those who aged 45-year or above were 4.61 times (95%CI 2.09-11.07) more likely to have cataract. Bivariate analysis results showed that presence of fall risk was associated with older age (above 45 years old; OR 2.38; 95%CI 1.28-4.49), diagnosis of cataract (OR 3.3; 95%CI 1.71-6.33) and osteoarthritis (OR 12.68; 95%CI 1.70-564.75). Logistic regression analysis further illustrated that cataract (p = 0.04) remained as a significant predictor of fall risk after controlling age, gender, osteoarthritis and osteoporosis in the model. Conclusion: Our data showed that presence of cataract diagnosis was significantly associated with higher fall risk among PIDs in hostel setting. Given cataract was a prevalent condition especially among aging PIDs, early screening and intervention could be crucial components of fall prevention strategy in a hostel setting.

Pay Attention to Hypertension (PAtH): Findings from a cardiovascular health promotion intervention for adults with intellectual disabilities participating in Special Olympics programming.

Cardiovascular disease (CVD) affects adults globally. People with intellectual disabilities (PWID) may be at higher risk of CVD and associated risk factors (e.g. obesity, hypertension, and diabetes). We developed Pay Attention to Hypertension (PAtH), a cardiovascular health promotion intervention, and tested its impact on changes in blood pressure (BP), lifestyle behaviours and health-related empowerment among PWID. PAtH was developed with a Special Olympics community organisation that supports PWID in developing self-confidence and social skills through participation in sports. The 6-month intervention consisted of 1-h individualised virtual sessions delivered monthly by nursing students/novice nurses. Sessions covered specific themes, including monitoring BP, adopting healthy lifestyles and managing stress, and were individually tailored to the capacities and needs of participants. A single group pre-post-intervention design was used to assess the intervention's effects among participants who completed the intervention and data collection. Data included baseline and follow-up BP measurements from 7-day logbooks and questionnaires assessing lifestyle behaviours [physical activity (PA), screen time and diet], and health-related empowerment. Seventy-four participants were included in the analyses. Between baseline and follow-up, there were no changes in systolic and diastolic BP, PA or leisure screen time. The proportion of participants who reported adding salt when cooking decreased from baseline to follow-up (19.7% vs. 12.7%, P=0.034), and we found improvements for several items measuring health-related empowerment (P≤0.003). Improvements in health-related empowerment were found following PAtH. More intensive interventions may be needed to result in changes in lifestyle behaviours and BP. The integration of adapted cardiovascular health promotion initiatives within well-established community organisations such as Special Olympics is a promising avenue to contribute to cardiovascular health promotion among PWID.

Family Perceptions About the Methodology of the “We All Are Campus” Training Program

<p style="text-align:justify">The transition to adulthood involves not only the acquisition of professional skills but also the development of social and emotional competencies that enable individuals to fully integrate into society. The educational program "We all are campus" of the University of Murcia focuses on preparing young people with intellectual disabilities for the ultimate goal of employment. In this study, 30 family members or guardians of people with intellectual disabilities (PcDI) participated and were consulted about their perceptions of this educational program. The research was conducted using a mixed qualitative methodology, adopting a case study approach. The main results indicate that the training received by the students improves aspects such as their interpersonal relationships and development. In addition, it is relevant to highlight that the family members emphasize an increase in maturity and the knowledge of the people with intellectual disabilities who attended the program "We all are campus". It is concluded that there are several aspects that are relevant to the families, among them, the optimism and support that their relatives need in the face of the uncertainty of their future.</p>

Efficacy and tolerability of Brivaracetam in people with intellectual disability compared to those without intellectual disability

IntroductionIn England, nearly a quarter of people with intellectual disability (PwID) have epilepsy. Though 70 % of PwID have pharmaco-resistant seizures only 10 % are prescribed anti-seizure medication (ASMs) licenced for pharmaco-resistance. Brivaracetam (BRV) licenced in 2016 has had nine post-marketing studies involving PwID. These studies are limited either by lack of controls or not looking at outcomes based on differing levels of ID severity. This study looks at evidence comparing effectiveness and side-effects in PwID to those without ID prescribed Brivaracetam (BRV). MethodsPooled case note data for patients prescribed BRV (2016–2022) at 12 UK NHS Trusts were analysed. Demographics, starting and maximum dose, side-effects, dropouts and seizure frequency between ID (mild vs. moderate-profound (M/P)) and general population for a 12-month period were compared. Descriptive analysis, Mann-Whitney, Fisher’s exact and logistic regression methods were employed. Results37 PwID (mild 17 M/P 20) were compared to 102 without ID. Mean start and maximum dose was lower for PwID than non-ID. Mean maximum dose reduced slightly with ID severity. No difference was found between ID and non-ID or between ID groups (Mild vs M/P) in BRV’s efficacy i.e. >50 % seizure reduction or tolerability. Mental and behavioural side-effects were more prevalent for PwID (27.0 % ID, 17.6 % no ID) but not significantly higher (P = 0.441) or associated with ID severity (p = 0.255). ConclusionThis is the first study on BRV, which compares ID cohorts with differing severity and non-ID. Efficacy, tolerability and side-effects reported are similar across differing ID severity to those with no ID.

The relationship between clinical presentation and the nature of care in adults with intellectual disability and epilepsy - national comparative cohort study.

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 care status relationship and clinical characteristics of PwID and epilepsy. Explore and compare the clinical characteristics of PwID with epilepsy across different care settings. A retrospective multicentre cohort study across England and Wales collected information on seizure characteristics, intellectual disability severity, neurodevelopmental/biological/psychiatric comorbidities, medication including psychotropics/anti-seizure medication, and care status. Clinical characteristics were compared across different care settings, and those aged over and younger than 40 years. Of 618 adult PwID across six centres (male:female = 61%:39%), 338 (55%) received professional care whereas 258 (42%) lived with family. Significant differences between the care groups existed in intellectual disability severity (P = 0.01), autism presence (P < 0.001), challenging behaviour (P < 0.001) and comorbid physical conditions (P = 0.008). The two groups did not vary in intellectual disability severity/genetic conditions/seizure type and frequency/psychiatric disorders. The professional care cohort experienced increased polypharmacy (P < 0.001) and antipsychotic/psychotropic use (P < 0.001/P = 0.008).The over-40s cohort had lower autism spectrum disorder (ASD) and attention-deficit hyperactivity disorder (ADHD) comorbidity (P < 0.001/P = 0.007), increased psychiatric comorbidity and challenging behaviour (P < 0.05), physical multimorbidity (P < 0.001), polypharmacy (P < 0.001) and antipsychotic use (P < 0.001) but reduced numbers of seizures (P = 0.007). PwID and epilepsy over 40 years in professional care have more complex clinical characteristics, increased polypharmacy and antipsychotic prescribing but fewer seizures.

The views of psychiatrists on proposed changes to the England and Wales Mental Health Act 1983 legislation for people with intellectual disability: A national study.

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. To obtain views of psychiatrists working with PwID in England and Wales regarding the proposed MHA changes. This study focusses specifically on the impact on PwID. A cross-sectional online mixed methodology survey of Likert and free-text response questions was developed, to ascertain perceptions of proposed legislative changes to the MHA. A non-discriminatory exponential snowballing technique leading to non-probability sampling was used to disseminate the survey. Quantitative data was analysed using descriptive statistics, Mann-Whitney and Fisher's exact tests. Thematic analysis was conducted on free text responses. A total of 82 psychiatrists (33%) from approximately 250 eligible completed the survey. Nearly two-thirds (64%) reported good awareness of the proposed changes, with over half (55%) reporting disagreement with the changes. Psychiatrists working in inpatient settings for PwID reported increased awareness of the changes, less agreement with the reforms, and increased expectations of the reforms having negative unintended consequences, compared to their peers working exclusively in the community. Consultants reported greater disagreement with the changes compared to their non-consultant peers. Qualitative analysis identified five main themes: impact on diagnosis and treatment, seeking alternative options, introducing inequities, resources, and meeting holistic care goals through the Care, Education and Treatment Reviews (CETR) process. Psychiatrists working with PwID report widespread disagreement with the proposed changes to the MHA for PwID, with greater levels of disagreement among those working in inpatient services. Caution with respect to the proposed changes, and monitoring of the impact of the changes if implemented, is advised.

The potential for medicinal cannabis to help manage challenging behaviour in people with intellectual disability: A perspective review.

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 suitably comprehend and/or communicate concerns. This predisposes to poor health and social outcomes. There is no evidence-based treatments for managing challenging behaviour. Cannabidiol (CBD) and tetrahydrocannabinol (THC) are being trialled for a range of disorders, which are over-represented in PwID and provoke challenging behaviours, such as severe epilepsy, spasticity, post-traumatic stress disorder, social phobia, pain, etc. This perspective review explores the different conditions, which benefit from medicinal CBD/THC preparations, by analysing recent literature from neurobiological, pre-clinical and clinical studies related to the topic. The evidence is synthesised to build an argument of the therapeutic benefits and challenges of medicinal cannabis to manage severe challenging behaviour in PwID. There is developing evidence of medicinal CBD/THC improving psychiatric and behavioural presentations in general. In particular, there is emergent proof in certain key areas of influence of medicinal CBD/THC positively supporting challenging behaviour, for example in children with neurodevelopmental disorders. However, there are significant challenges in employing such treatments in vulnerable populations such as PwID. Further clinical research for the considered use of medicinal CBD/THC for challenging behaviour management in PwID is needed. Strong co-production with experts with lived experience is needed for further testing to be done in this exciting new area.

Physical Activity and Quality of Life among People with Intellectual Disabilities: The Role of Gender and the Practice Characteristics.

Staying physically active is synonymous with good health and well-being, and its benefits on the health of people with intellectual disabilities (PWIDs) have been studied. However, there is a lack of information on how it can influence their quality of life (QoL). This study aimed to analyze the relationship between QoL and physical activity in PWIDs according to gender and the characteristics of the practiced activity. A questionnaire was administered to 380 PWIDs (mean age of 28.23 ± 12.53), 54.21% of which were men. The QoL dimensions and second-order factors were studied in relation to practicing physical activity, the practice type, the context, and gender. The results indicate that people who practiced any activity showed better QoL values. Those who engaged in a nonregulated physical activity had better values in self-determination, emotional well-being, social inclusion, and personal development, while those who did sports presented higher scores in interpersonal relationships and physical well-being. In addition, it also appears that the association between physical activity and the QoL dimensions is distinct in inclusive and specific contexts. In conclusion, physical activity is related to a better QoL, although the impact of the practice type and context differs for each QoL dimension.

Neuromuscular control of masticatory muscles in people with intellectual disability, middle-aged adults and older adults.

Motor control issues are common for people with intellectual disabilities (PWID), resulting in difficulties with basic activities of daily living, including eating. Mastication, which is crucial for digestion and overall health, is poorly understood in this population. PWID shows frailty similar to older people, highlighting the importance of comparing masticatory motor control with older adults. This study compared the neuromuscular control of the masticatory muscles in middle-aged, PWID and older adults. A cross-sectional analytical design was used. During the mastication task of a carrot piece (2cm in diameter and weighing 0.5g), surface electromyography was used to record muscle activity patterns from the right and left masseter and temporalis muscles. Principal component analysis (PCA) was used to assess neuromuscular control. A z-score normalisation of the first component's variance from PCA to identify those individuals with altered neuromuscular control. A mixed ANOVA was performed to assess the interaction between principal components, groups and body composition. Thirty PWIDs (aged 35-55years), middle-aged adults and 32 older adults were recruited. PWID and older adults showed decreased neuromuscular control of the masticatory muscles compared to middle-aged control adults (P<0.05). PWID had the highest proportion of individuals with altered neuromuscular control of the masticatory muscle (53%) compared to older adults (19%) and middle-aged adults (0%) (P<0.05). Our results indicate that PWID and older adults have reduced neuromuscular control compared to middle-aged adults. Notably, a significant proportion of the PWID showed altered masticatory muscle control compared to older adults. Further research is needed to explore the potential benefits of masticatory muscle training for PWID.

The duration of To Be(Hold) in Revere: An Exhibition of Historical Photographs of People with Intellectual Disability

In this article, I discuss my curation of a photographic exhibition of people with intellectual disability (PWID) who were institutionalised at the Grahamstown Lunatic Asylum, from 1890 to 1920. The exhibition titled, To Be(Hold) in Revere, aimed to display affirmative photographs and humanising stories of PWID obtained from the Asylum's casebooks. The Sites of Conscience movement influenced the exhibition's aim. The movement seeks to recover the agency and personhood of those who lived at a site of human suffering in order to establish a collective memory of their voices and experiences. This article details my curatorial approach; it provides a telling of the life stories of seven patients and outlines how I adopted the principles of the Sites of Conscience movement in facilitating exhibition walkabouts with the public. A key facet of the walkabouts was encouraging the public to witness the personhood of the Asylum's PWID, as well as to explore the current issues faced by today's PWID and advocate for their human rights.

Mental Health of People with Intellectual Disabilities Living in Residential Care before, during, and after Lockdown.

The impact of the COVID-19 on the well-being of people with intellectual disabilities (PID) has been little studied. We analyzed its impact with a cohort study quantitatively analyzing anxiety, depression, organic symptoms, quality of life, and support needs in 24 PID, aged 19-74 years (x¯ 40, σ = 13.09), living in a residential center, before, during, and after the pandemic. Their mental health improved unexpectedly at the onset of the lockdown although there was an increase in organic symptoms. But, with the progress of the lockdown, their mental health deteriorated drastically. On the contrary, as expected, their quality of life and support needs worsened from the beginning of the lockdown until the country returned to normality, a time when there was a general recovery, without reaching pre-pandemic levels. These results show that the mental health of PID was affected differently to that of people without intellectual disabilities.

People with intellectual disability at the Grahamstown Lunatic Asylum: humanizing photographs, stories and narratives from the casebooks, 1890–1920

In the medical literature of South Africa in the early twentieth century, Dr Thomas Duncan Greenlees published a dehumanized portrayal of people with intellectual disability (PWID) who were institutionalized at the Grahamstown Lunatic Asylum. To restore the humanity of the institutionalized patients, the asylum’s casebooks provide a valuable resource. To this end, the article investigates the casebook entries and photographs to explore the humanity of PWID. The investigation of the casebooks follows Ariella Azoulay’s call for us to engage with, and retrieve, the stories of the photographed PWID that tell of times before and after their admittal to the asylum, of multiple spaces in and beyond the asylum, and by including the various roles and positions that they performed in the asylum’s body politic. These stories are enriched by adopting a disability mode of analysis.

Overcoming Communication Barriers to Facilitate Healthcare Access for People with Intellectual Disability

Communication barriers are one of the many reasons why People with Intellectual Disability (PWID) are prevented from accessing appropriate healthcare services. As a result, the health of this population is poorer than the general population in many countries around the world. Understanding the nature of the limitations faced by PWID in language learning and communication forms the basis of creatively developing strategies to overcome them. Building bridges of understanding between the clinician and the PWID increases the chances of accurate diagnoses of health conditions, effective treatment, and an overall improved quality of life for the patient.

Supporting a Patient with Intellectual Disability in a GP Clinic: A Practical Approach

People with intellectual disability(PwID) pose a challenge to Primary Care Physicians due to their complex care needs arising from their multiple biological, psychological, social and factors. Although the exact prevalence is not documented in Singapore, it is estimated that about 3% of the population has Intellectual Disability. The local primary healthcare landscape is due to undergo significant changes with the implementation of Healthier SG and this will see the empanelment of patients to one family physician to ensure ongoing care continuity and personalised healthcare for the local population. Primary healthcare providers are aptly placed to manage PwID, with the aim of maintaining these patients in the community and reducing the stressors that their secondary care partners are already facing. To achieve this, it is recommended that comprehensive assessments looking at the patient as well as their family, social and care network be done. There are numerous obstacles to consider, from encouraging and allowing access to healthcare providers, to managing the consultation so that effective information exchange can occur, to effective management of medical, behavioural issues and management of the patients carer, family and support network. An effective interprofessional approach in the management of PwID and support to their family/carers not only ensures their holistic well-being, but also their ability to integrate into the community.

A systematic review of physical activity: benefits and needs for maintenance of quality of life among adults with intellectual disability.

The inactivity of people with intellectual disabilities (PwID) is a major contributor to ill health. Probably because people with intellectual disabilities are not adequately informed about physical activity and intervention programs required to enhance their fitness. This study critically reviewed physical activity: benefits and needs for maintenance of quality of life among adults with intellectual disability. An extensive search of bibliographic databases such as PubMed, PsycINFO, BioMed Central and Medline identified 735 academic papers. The research rigour was evaluated, and the validity of the findings was established. Based on the inclusion criteria, 15 studies were included in the review. Various forms of physical activity were studied as interventions. The results of a critical review indicate that physical activity has a moderate to strong positive impact on weight loss, sedentary behaviour, and disability-related quality of life. Adults with ID may benefit from physical activity as a non-pharmaceutical method of improving their health needs. However, this study's results may only apply to some adults with intellectual disabilities. The sample size needs to be increased in future studies in order to draw generalizable conclusions.

The long-term psycho-social impact of the pandemic on people with intellectual disability and their carers.

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 evidence of the pandemic's psycho-social impact on PWID originates mainly from cross-sectional surveys conducted with professionals and carers. There is little research on the longitudinal psycho-social impact of the pandemic from PWID themselves. To examine the long-term psycho-social impact of the pandemic on PWID. A cross-sectional survey, following STROBE guidance, of 17 Likert scale statements (12 to PWID and 5 to their carers) to ascertain the pandemic's psychosocial impact was conducted. Every other PWID open to a specialist Intellectual Disability service serving half a UK County (pop:500,000) was selected. The same survey was re-run with the same cohort a year later. Descriptive statistics, Mann-Whitney, Chi-square and unpaired-t tests were used to compare responses. Significance is taken at p < .05. Comments were analysed using Clarke and Braun's approach. Of 250 PWID contacted, 100 (40%) responded in 2020 and 127 (51%) in 2021. 69% (2020) and 58% (2021) reported seeking medical support. Carers, (88%, 2020 and 90%, 2021) noticed emotional changes in PWID they cared for. 13% (2020) and 20% (2021) of PWID had their regular psychotropics increased. 21% (2020) and 24% (2021) had their pro re nata (PRN) medication adjusted. PWID or carers demonstrated no statistically significant variation in responses between themselves from 2020 to 2021. PWID were more likely to report being upset/distressed compared to their carers' perceptions of them in both years (p < .001). Four themes were identified. This longitudinal study highlights the diverse psycho-social impact of the pandemic on PWID in the UK. The Pandemic's psycho-social impact has been significantly underestimated.