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"Toms, Jonathan"
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Citizenship and Learning Disabled People: The Mental Health Charity MIND’s 1970s Campaign in Historical Context
Current policy and practice directed towards people with learning disabilities originates in the deinstitutionalisation processes, civil rights concerns and integrationist philosophies of the 1970s and 1980s. However, historians know little about the specific contexts within which these were mobilised. Although it is rarely acknowledged in the secondary literature, MIND was prominent in campaigning for rights-based services for learning disabled people during this time. This article sets MIND’s campaign within the wider historical context of the organisation’s origins as a main institution of the inter-war mental hygiene movement. The article begins by outlining the mental hygiene movement’s original conceptualisation of ‘mental deficiency’ as the antithesis of the self-sustaining and responsible individuals that it considered the basis of citizenship and mental health. It then traces how this equation became unravelled, in part by the altered conditions under the post-war Welfare State, in part by the mental hygiene movement’s own theorising. The final section describes the reconceptualisation of citizenship that eventually emerged with the collapse of the mental hygiene movement and the emergence of MIND. It shows that representations of MIND’s rights-based campaigning (which have, in any case, focused on mental illness) as individualist, and fundamentally opposed to medicine and psychiatry, are inaccurate. In fact, MIND sought a comprehensive community-based service, integrated with the general health and welfare services and oriented around a reconstruction of learning disabled people’s citizenship rights.
Journal Article
Mental hygiene to civil rights: Mind and the problematic of personhood, c.1900 to c.1980
Imagine yourself looking at a large oil painting. It stretches from floor to ceiling on the wall in front of you. On it is displayed a scene from a busy market square. Full of people of different descriptions, all living their lives, but frozen here in time and space. Who are they? What are they doing? How would you interpret them? Perhaps you would categorize them into groups with common characteristics. What are their motives? Perhaps you would interpret a look on a face, a smile, a frown, a look of fear.But imagine now that you walk towards the picture. You don't stop at the canvas and the frame that contains it but continue on into and within the frame itself. As you do so you find the scene simultaneously shifting from two dimensions to three and from stasis to animation. Noise, colour and movement confront you. And most of all voices. These people are alive and speaking back at you. You realize that your knowledge has only ever been one-way and that your looking through the frame from outside has delimited what is available for you to see and here. It is not that you have thrown away the frame and exposed the world in its totality. You have entered within the frame itself. No longer the sole interpreter; you are both the interpreter and the interpreted. Can you ground your knowledge? Can you resist the urge to step back outside the frame? It was safer then wasn't it?
Dissertation
Characterising patterns of COVID-19 and long COVID symptoms: evidence from nine UK longitudinal studies
Multiple studies across global populations have established the primary symptoms characterising Coronavirus Disease 2019 (COVID-19) and long COVID. However, as symptoms may also occur in the absence of COVID-19, a lack of appropriate controls has often meant that specificity of symptoms to acute COVID-19 or long COVID, and the extent and length of time for which they are elevated after COVID-19, could not be examined. We analysed individual symptom prevalences and characterised patterns of COVID-19 and long COVID symptoms across nine UK longitudinal studies, totalling over 42,000 participants. Conducting latent class analyses separately in three groups (‘no COVID-19’, ‘COVID-19 in last 12 weeks’, ‘COVID-19 > 12 weeks ago’), the data did not support the presence of more than two distinct symptom patterns, representing high and low symptom burden, in each group. Comparing the high symptom burden classes between the ‘COVID-19 in last 12 weeks’ and ‘no COVID-19’ groups we identified symptoms characteristic of acute COVID-19, including loss of taste and smell, fatigue, cough, shortness of breath and muscle pains or aches. Comparing the high symptom burden classes between the ‘COVID-19 > 12 weeks ago’ and ‘no COVID-19’ groups we identified symptoms characteristic of long COVID, including fatigue, shortness of breath, muscle pain or aches, difficulty concentrating and chest tightness. The identified symptom patterns among individuals with COVID-19 > 12 weeks ago were strongly associated with self-reported length of time unable to function as normal due to COVID-19 symptoms, suggesting that the symptom pattern identified corresponds to long COVID. Building the evidence base regarding typical long COVID symptoms will improve diagnosis of this condition and the ability to elicit underlying biological mechanisms, leading to better patient access to treatment and services.
Journal Article
What is the impact of longer patient travel distances and times on perioperative outcomes following revision knee replacement: a retrospective observational study using data for England from Hospital Episode Statistics
ObjectivesPatients undergoing revision total knee replacement (RevKR) surgery often have difficulties mobilising and increasingly rely on family support. Evolving practice in England aims to manage these patients in specialised centres with the intention of improving outcomes. This practice will result in longer travel distances and times in this frailer group of patients. We want to examine the types of distances and travel times patients can be expected to travel for this complex orthopaedic surgery and to explore concerns of how these impact patient outcomes.DesignRetrospective observational study from the Hospital Episode Statistics. Multivariable adjusted logistic regression models were used to investigate the relationship between patient travel distances and times with perioperative outcomes.SettingPatients presenting to tertiary referral centres between 1 January 2016 and 31 December 2019. A tertiary referral centre was defined as a trust performing >49 revisions in the year prior.ParticipantsAdult patients undergoing RevKR procedures for any reason between 1 January 2016 ando 31 December 2019.ExposureThe shortest patient level travel distance and time was calculated using the Department of Health Journey Time Statistics using Transport Accessibility and Connectivity Calculator software and Dijkstra’s algorithm.Main outcome measuresThe primary outcome is emergency readmission within 30 days. Secondary outcomes are mortality within 90 days and length of inpatient stay.Results6880 patients underwent RevKR at 36 tertiary referral centres. There was a weak correlation between social deprivation and travel distance, with patients from the most deprived areas travelling longer distances. Overall, 30-day readmission was not statistically associated with longer driving distance (OR 1.00 95% CI 0.99 to 1.02) or peak driving times (OR 1.00 95% CI 0.99 to 1.01).ConclusionsThere was no association between increasing travel distance and time on perioperative outcomes for RevKR patients.
Journal Article
What factors are important to patients when considering a revision total knee replacement in a network model of care? An exploratory qualitative analysis
Background
Revision knee replacement carries significant implications for healthcare systems both clinically and financially. Rationalising revision knee replacement surgery in fewer, more experienced hospitals and their surgeons has the promise of reduced reoperation rates and lower costs. However, this may create additional logistic and financial challenges for patients. This study aimed to explore the factors important to patients in the decision-making process for revision knee replacement surgery in a regional network model of care.
Methods
An exploratory analysis was performed using semi structured interviews with 7 patients (median age 75 years: range 61 to 86) with experience of revision knee replacement either as a previous patient, family member or lay member of a research group. Interviews were audio-recorded, transcribed and de-identified and analysed using a descriptive thematic analysis.
Results
Four themes were important in participants’ accounts: importance of returning to normality; faith in surgical expertise; travel for major surgery; travel for shorter hospital visits.
Conclusions
Our findings suggest that the theory of travelling further for better results is universally acknowledged by patients, but that age, mobility and dependency often place restrictions on accessibility. Utilising local services for shorter hospital visits before and after revision surgery is an attractive option for patients hoping to benefit from surgical expertise.
Journal Article
The Use of Induced Pluripotent Stem Cells as a Model for Developmental Eye Disorders
Approximately one-third of childhood blindness is attributed to developmental eye disorders, of which 80% have a genetic cause. Eye morphogenesis is tightly regulated by a highly conserved network of transcription factors when disrupted by genetic mutations can result in severe ocular malformation. Human-induced pluripotent stem cells (hiPSCs) are an attractive tool to study early eye development as they are more physiologically relevant than animal models, can be patient-specific and their use does not elicit the ethical concerns associated with human embryonic stem cells. The generation of self-organizing hiPSC-derived optic cups is a major advancement to understanding mechanisms of ocular development and disease. Their development
has been found to mirror that of the human eye and these early organoids have been used to effectively model microphthalmia caused by a
variant. hiPSC-derived optic cups, retina, and cornea organoids are powerful tools for future modeling of disease phenotypes and will enable a greater understanding of the pathophysiology of many other developmental eye disorders. These models will also provide an effective platform for identifying molecular therapeutic targets and for future clinical applications.
Journal Article
Use of computerised adaptive testing to reduce the number of items in patient-reported hip and knee outcome scores: an analysis of the NHS England National Patient-Reported Outcome Measures programme
ObjectiveOver 160 000 participants per year complete the 12-item Oxford Hip and Knee Scores (OHS/OKS) as part of the NHS England Patient-Reported Outcome Measures (PROMs) programme. We used a modern computational approach, known as computerised adaptive testing (CAT), to simulate individually tailored OHS and OKS assessment, with the goal of reducing the number of questions a patient must complete without compromising measurement accuracy.MethodsWe fit the 2018/2019 PROMs data to an item response theory (IRT) model. We assessed IRT model assumptions alongside reliability. We used parameters from the IRT model with data from 2017/2018 to simulate CAT assessments. Two simulations were run until a prespecified SE of measurement was met (SE=0.32 and SE=0.45). We compared the number of questions required to meet each cut-off and assessed the correlation between the full-length and CAT administration.ResultsWe conducted IRT analysis using 40 432 OHS and 44 714 OKS observations. The OHS and OKS were both unidimensional (root mean square error of approximation 0.08 and 0.07, respectively) and marginal reliability 0.91 and 0.90. The CAT, with a precision limit of SE=0.32 and SE=0.45, required a median of four items (IQR 1) and two items (IQR 1), respectively, for the OHS, and median of four items (IQR 2) and two items (IQR 0) for the OKS. This represents a potential 82% reduction in PROM length. In the context of 160 000 yearly assessments, these methodologies could result in the omission of some 1 280 000 redundant questions per year, which equates to 40 000 hours of patient time.ConclusionThe application of IRT to the OHS and OKS produces an efficient and substantially reduced CAT. We have demonstrated a path to reduce the burden and potentially increase the compliance for these ubiquitous outcome measures without compromising measurement accuracy.
Journal Article