Learning Disabilities In England Research Articles

The oral health of adults with learning disabilities: A secondary analysis of the Adult Dental Health Survey 2009.

Adults who have learning disabilities are a vulnerable group, little is known about their oral health and how this affects their quality of life. The aims of this secondary analysis of data from the 2009 Adult Dental Health Survey (ADHS) were to describe the oral health status of adults with learning disabilities, determine if severity of learning disability is associated with oral health and identify some of the methodological complexities of working with this population. The survey yields the most recent representative data on the oral health of adults with learning disabilities in England and importantly, contains information about oral health related quality of life (OHRQoL). Secondary analysis of data from a supplemental survey of adults with learning disabilities collected alongside the 2009 ADHS. 607 participants with a diagnosed learning disability aged 18 years and over. Adults with learning disabilities had similar levels of active dental caries, fewer natural teeth, and fewer fillings than comparable participants from the general population. Self-reported oral and general health were worse for adults with learning disabilities than the general population. Possible associations between the severity of learning disability and the numbers of decayed, missing or filled teeth were identified. However, large amounts of missing data limited the analysis. There are important questions relating to the accessibility of existing self-reported oral health questionnaires and the reliability of proxy-reported questions about OHRQoL that should be addressed to give a fuller picture of the oral health of adults with learning disabilities.

Hard to reach, or struggling to be heard? Real‐life experience of coproduction with people with learning disabilities

AbstractBackgroundCoproduction is a fast‐developing approach to patient involvement. It entails health and social care services users working as equals in partnership with providers and other public institutions to produce novel research and information, usually aimed at the improvement of service planning and delivery.MethodsThis paper presents two real‐life examples of attempted coproduction with a group of men with learning disabilities in England. The first case study concerns the piloting and assessment of a ‘user‐friendly’ version of a local authority's ‘vision statement’. The second explores an attempt to secure funding to develop and evaluate a community intervention with and for people with learning disabilities.FindingsTogether, these portraits capture two important and intertwined problems that afflict the field of coproduction: namely, the drive to create fast results and the challenges of time and resource allocation that service users and professionals face whenever they attempt to coproduce work in a meaningful way.ConclusionsThe paper concludes with some suggestions for how policy and practice might seek to address these issues in the future.

Moving house: How much choice do people with learning disabilities have about where they live?

AbstractBackgroundPeople with learning disabilities have the right to choose where they live. However, evidence suggests people's choices are limited due to a shortage of housing.Methods200 Lives was a mixed methods research project, which evaluated supported living and residential care for people with learning disabilities in England; 107 people with learning disabilities took part, 77 from supported living and 30 from residential care.FindingsTwo‐thirds of people in supported living compared to half of those in residential care chose the place they were currently living in; however, less than half of all participants looked at another property before moving to their current house. People in supported living were significantly more likely to have chosen who they lived with. Reasons for moving mainly consisted of reactive moves following an issue with the previous living situation. Many people had not considered moving in the future.ConclusionFindings suggest that people's choices about where to live were constrained regarding the properties on offer and who to live with. This suggests that people's housing rights were not being upheld. Support and housing providers should ensure that housing can adapt to people's changing needs and wishes over the course of their lives.

'Do they ever think about people like us?': The experiences of people with learning disabilities in England and Scotland during the COVID-19 pandemic.

People with learning disabilities in England and Scotland have experienced an increased risk of illness and death during the COVID-19 pandemic. Drawing on data of a longitudinal qualitative study with 71 disabled people and 31 disability organisations, this article examines the experiences of 24 people with learning disabilities in England and Scotland during the pandemic, reflecting on what rendered them vulnerable and placed them at risk. Qualitative interviews were conducted with participants and key informants at two timepoints; June–August 2020 and February–April 2021. Findings emerged across four key themes: failure to plan for the needs of people with learning disabilities; the suspension and removal of social care; the impact of the pandemic on people’s everyday routines; and lack of vaccine prioritisation. The inequalities experienced by people with learning disabilities in this study are not particular to the pandemic. We explore the findings in the context of theoretical frameworks of vulnerability, including Fineman’s conceptualisation of a ‘vulnerability paradigm’. We conclude that the structured marginalisation of people with disabilities, entrenched by government action and inaction, have created and exacerbated their vulnerability. Structures, policies and action must change.

Personalisation policy in the lives of people with learning disabilities: a call to focus on how people build their lives relationally

Social care provision across high-income countries has been transformed over the last ten years by personalisation – a policy agenda to give people with eligible support needs more choice and control over their support. Yet the ideological underpinnings of this transformation remain highly mutable, particularly in the context of reduced welfare provision that has unfolded in many nations advancing personalisation. How the policy has manifested itself has led to an expectation for people to self-build a life as individual consumers within a care market. This article draws on a study exploring how people with learning disabilities in England and Scotland are responding to the everyday realities of personalisation as it is enacted where they live and show the relationality inherent in their practices. We propose that the personalisation agenda as it currently stands (as an individualising movement involving an increasing responsibilisation of individuals and their families) ignores the inherently relational nature of care and support. We propose that social care policy needs to recognise the relational ways in which people build their lives and to advocate a redistribution of responsibility to reduce inequalities in the allocation of care.

Utilising the Orthoptic Skill Set to Improve Access to Eye Care for Adults with Severe/Profound Learning Disabilities-A Service Evaluation.

Intro:There is a wealth of research evidencing the high incidence of visual impairment (VI) and poor uptake of eye care services by adults with learning disabilities (LD). Despite this, very few authorities within England currently provide the additional support required by those with severe/profound LD (S/PLD).Method:By means of an initial funded pilot study, an unmet need was evidenced locally and a small service established to improve access to eye care for adults with S/PLD. Operational since 2007, this service has provided evidence to support the campaign for a nationally funded eye care pathway.This service evaluation outlines the initial service set up, aims and objectives, and provides an analysis of the current service by means of a detailed breakdown of service-user outcomes during a sample 5-year period.Results:Orthoptic home visits (OHV) revealed high levels of strabismus (54.4%), refractive error (43.3%), cataracts (23.3%), and many other ophthalmic conditions (29%). Over a quarter of the adults with LD (26.6%) were certified as VI and 61% of people were provided with tailored strategies, the majority of which were for visual processing difficulties.Conclusion:The prospect of a nationally funded eye care pathway for adults with LD in England is now a real possibility. This service model has identified a clearly defined unmet need and illustrates the unique skill set orthoptists can offer to address this health inequality. Requiring minimal financial outlay and flexible enough to be integrated into any future national eye care framework, this service has ensured that access to eye care is truly equitable for all people with LD.

Response to Symonds, Abbott and Dugdale (2020) ‘“Someone will come in and say I'm doing it wrong.” The perspectives of fathers with learning disabilities in England’

Response to Symonds, Abbott and Dugdale (2020) ‘“Someone will come in and say I'm doing it wrong.” The perspectives of fathers with learning disabilities in England’

The Use of Self – Advocacy to Reduce Social Exclusion of People with Learning Disabilities in England

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"Someone will come in and say I'm doing it wrong." The perspectives of fathers with learning disabilities in England.

Accessible summary When people with learning disabilities have children and become parents, they sometimes need good support to help them.Research about parents with learning disabilities and the support they get is usually about mothers and not fathers. There is not very much written about dads with learning disabilities.This paper is about interviews with eight dads with learning disabilities who told us about what it was like to be a dad and about the kind of support they had got.We think more support needs to be given to parents with learning disabilities and that dads should be included in this. BackgroundThis article reports on the perspectives of fathers with a learning disability in England about being fathers and the support they have received. Although there is an established literature that considers parenting with a learning disability, few studies have focused on the perspectives of fathers.MethodWe adopted a qualitative approach for this study, using semi‐structured interviews with eight fathers with learning disabilities, recruited through learning disability organisations and social media. The data were analysed using thematic analysis.ResultsBeing a father was important to participants and the findings are presented in three themes: descriptions of fatherhood; challenges of fatherhood; and support with fatherhood.ConclusionWe discuss how fathers' perspectives on fatherhood relate to wider transformations of fatherhood in society, the impact of these on fathering with a learning disability and the implications for services.

Social care for adults with learning disabilities in England: trends over time

Purpose The purpose of this paper is to examine trends over time in social care usage and expenditure for adults with learning disabilities in England. Design/methodology/approach Returns from councils with social services responsibilities in England concerning social care usage and expenditure were analysed to examine the national picture and trends over time for adults with learning disabilities. Findings In 2017/2018, 147,915 adults with learning disabilities were receiving long-term social care, an increase of 5.7 per cent from 2014/2015. Social care expenditure increased by 10.2 per cent from 2014/2015 to £5.54bn in 2017/2018; adjusted for inflation this was a 2.7 per cent increase. For adults with learning disabilities who receive social care, increasing numbers of people are living with families or in supported accommodation/living, with gradual declines in the number of people living in residential or nursing care. The number of adults with learning disabilities in temporary accommodation is small but increasing. Social implications While councils appear to be attempting to protect social care for adults with learning disabilities in the face of cuts to council expenditure, social care expenditure and coverage are not keeping pace with likely increases in the number of adults with learning disabilities requiring social care. Originality/value This paper presents in one place statistics concerning long-term social care for adults with learning disabilities in England.

Do Learning Disabilities Affect Testicular Cancer Survival: A National Cohort Study Between 2001 and 2015

BackgroundSome 1.5 million people in the UK have a learning disability (LD). This vulnerable group derives less benefit from population-based education programs. They are prone to underenrolment in screening programs and may lack the ability to perform self-examination. ObjectiveTo identify patients with LD in England and assess their testicular cancer (TC) survival in comparison to the general population. Design, setting, and participantsPatient records were identified from the Hospital Episode Statistics database. All patients resident in England with a diagnosis of mental debility, “developmental disorder of scholastic skills”, or attending under the specialty of LD between April 1, 2001 and June 30, 2015 were included. Outcome measurements and statistical analysisWe measured survival outcomes according to the Kaplan-Meier method and used log-rank tests to assess survival difference between demographic groups. Results and limitationsOf 158138 male patients with LD, 331 had TC and 32 died of cancer. LD patients had a poorer prognosis, with 10-yr TC-specific survival of 88.4% (95% confidence interval [CI] 84.5–92.4%) in the LD group versus 96.8% (95% CI 96.6–97.1%) in the non-LD group. LD patients also had lower all-cause survival rates. The 10-yr survival rate was 77.6% (95% CI 72.2–83.3%) for LD patients versus 89.9% (95% CI 89.4–90.3%) for non-LD patients, while the corresponding 5-yr rates were 84% (95% CI 79.9–88.4%) versus 92.2% (95% CI 91.8–92.5%). ConclusionsEducation regarding self-examination for TC must be provided in a format suitable for those with LD. Carers for male patients with LD should be informed about testicular examination and sinister signs. Patient summaryTesticular cancer patients who also have a learning disability (LD) have a one in nine chance of dying, compared to a one in 36 chance for testicular cancer patients without LD. This is because patients with LD are less likely to detect the disease at an earlier stage.

Development and implementation of the Steps to Successful Palliative Care programme in residential care homes for people with a learning disability.

For health and social care services to meet the needs of a growing and ageing population they need to respond appropriately. This response is only going to be possible if attention is paid to the individuals within it. This includes those people living with a learning disability (LD). To develop and implement a palliative care programme that would meet the needs of people with a LD, their families and care home staff. A palliative care programme and resource folder was created following a literature review and meetings with LD and specialist palliative care experts, organisations and care home managers. This folder was further developed collaboratively throughout the programme's implementation. 39 homes were recruited and 86% completed the programme. This programme enabled the identification, assessment and management of the health and social care needs of people living and dying in a care home with a LD.

The Learning Disabilities Mortality Review (LeDeR) programme

BackgroundSince the 1990s reports have consistently highlighted health inequalities faced by people with learning disabilities. Data from the Primary Care Research Database suggests an all-cause standardised mortality ratio for people with learning disabilities of 3.18, and that people with learning disabilities die approximately 20 years sooner than people without learning disabilities.AimThis presentation will provide an overview of the Learning Disabilities Mortality Review (LeDeR) programme. LeDeR aims to contribute to improvements in the quality of health and social care for people with learning disabilities in England through retrospective mortality reviews.MethodInitial reviews are undertaken of all deaths notified to the LeDeR programme of people with learning disabilities aged 4 years and over. Where indicated, a full multiagency review is conducted. Deaths of young people aged 18–24, and of people from Black and Minority Ethnic communities are subject to priority themed review; each of these receive a full multiagency review.ResultsThe LeDeR programme will be fully rolled out across England by the end of 2017. In this presentation we will share some of the learning from reviews that are particularly pertinent to GPs, and some of the service improvements that have resulted.ConclusionTo our knowledge, this is the first national programme of mortality reviews of people with learning disabilities in the world. Its focus is service improvement: it is about learning lessons and making changes to improve the lives of, and support for people with learning disabilities.

Paid employment amongst adults with learning disabilities receiving social care in England: trends over time and geographical variation

Purpose The purpose of this paper is to examine trends over time and geographical variation in rates of paid employment amongst working age adults with learning disabilities receiving long-term social care in England. Design/methodology/approach Data were drawn from NHS Digital adult social care statistics examining paid/self-employment for working age (18-64 years) adults with learning disabilities known to social care (2008/2009 to 2013/2014) or receiving long-term social care (2014/2015 to 2016/2017). Findings In 2016/2017, councils reported that 5.7 per cent of working age adults (7,422 people) with learning disabilities receiving long-term social care were in paid/self-employment, with higher employment rates for men than women and most people working less than 16 hours per week. Paid employment rates seem to be slightly declining over time, and there is wide variation across councils in reported paid/self-employment rates. Social implications Despite good evidence for the cost effectiveness of supported employment support, employment rates for adults with learning disabilities receiving long-term social care remain extremely low. Originality/value This paper presents in one place statistics concerning the paid employment of working age adults with learning disabilities in England.

Moving on: Transitions out of care for young people with learning disabilities in England and Sweden

Accessible summary When young people with learning disabilities leave the care system, they can experience many problems. Here we describe some of these problems and what they do (or would like us to do) to improve things. Young people do not always want the same things that professionals or family carers want. We do not spend enough time listening to what young people can tell us. AbstractBackgroundYoung people with learning disabilities are frequently underrepresented in research accounts. This study describes the experiences of young people moving from the care system.MethodsWe scoped the English and Swedish literature for first‐hand accounts and interviewed four young people with learning disabilities leaving the English care system. We combined findings from both sources.Findings“Grey” and campaigning literature are more likely than academic studies to include the voices of service users, but even then, the voices tend to be those of professional or family carers. Both the literature and interviews demonstrate young peoples’ awareness and understanding of the social as well as financial benefits of work. Good foster care could be precarious, and young people in unhappy placements lacked direction. Exploitation around a young person's housing and finances could be problems. There was evidence of “threshold” difficulties in accessing services.ConclusionsDespite an NHS commitment to listening to users in the UK, and similar aspirations in Sweden, our search of the literature identified few studies reporting care leavers' with learning disabilities own words. Our data add to the voices of a group frequently silent or silenced. We found evidence of resilience and hope as well as difficulties and frustrations. The accounts in the literature and our interviews provide data on what it can be like to try to operate “the system.” The people we spoke with and those whose accounts we found in the literature were thoughtful and engaging. They provide an important source of knowledge for policy and practice.

Variation in rates of inpatient admissions and lengths of stay experienced by adults with learning disabilities in England

PurposeThe purpose of this paper is to analyse rates of inpatient admissions for people with learning disabilities in England and to identify factors associated with higher rates of inpatient admission.Design/methodology/approachSecondary analysis of data submitted as part of the Transforming Care programme in England.Findings2,510 people with learning disabilities in England were inpatients on 31st March 2016. Findings indicate that people with learning disabilities are at risk of higher rate of inpatient admission than can be explained by prevalence within the general population; this risk may be associated with areas where there are higher numbers of inpatient settings which provide assessment and treatment for people with learning disabilities.Research limitations/implicationsVariability in the quality of the data submitted by commissioners across the 48 Transforming Care Plan areas mean that greater attention needs to be paid to determining the validity of the common reporting method. This would improve the quality of data and insight from any future analysis.Practical implicationsThe study’s findings are consistent with the hypothesis that geographical variations in the risk of people with learning disabilities being admitted to inpatient services are not consistent with variations in prevalence rates for learning disability. The findings support the hypothesis that building alternatives to inpatient units should impact positively on the numbers of learning disabled people who are able to live independent lives.Originality/valueThis is the first study which examines the data which commissioners in England have reported to NHS England on the experience of people with learning disabilities who are admitted as inpatients and to report on the possible factors which result in higher rates of inpatient admission.

Deprivation of liberty applications concerning people with learning disabilities in England: trends over time and geographical variation

PurposeThe purpose of this paper is to analyse trends over time and geographical variation in Deprivation of Liberty Safeguards (DoLS) applications for adults with learning disabilities.Design/methodology/approachSecondary analysis of national- and local authority-level statistics collected and reported by NHS Digital.FindingsThere has been a sharp national increase in the number of completed and granted DoLS applications regarding adults with learning disabilities since the 2014 “Cheshire West” Supreme Court judgement, with a greater proportion of completed DoLS applications being granted. There is extreme geographical variation across local authorities in England in the rates at which DoLS applications are being made and granted.Practical implicationsThe extreme variation in DoLS applications regarding adults with learning disabilities is highly unlikely to be a function of differences in mental capacity and living circumstances experienced by adults with learning disabilities across local authorities, and urgent attention needs to be paid to this variation.Originality/valueThis is the first paper to analyse the geographical variation at local authority level for completed and granted DoLS applications regarding adults with learning disabilities.

Day services and home care for adults with learning disabilities across the UK

PurposeThe purpose of this paper is to compare data from national social care statistics on day services and home care for people with learning disabilities across England, Scotland, Wales and Northern Ireland.Design/methodology/approachNational social care statistics (England, Scotland, Wales and Northern Ireland) reporting the number of adults with learning disabilities accessing day services and home care were reviewed, with data extracted on trends over time and rate of service use.FindingsRegarding day services, despite some variations in definitions, the number of adults with learning disabilities in England, Scotland and Wales (but not Northern Ireland) using building-based day services decreased over time. Data from Scotland also indicate that adults with learning disabilities are spending less time in building-based day services, with alternative day opportunities not wholly compensating for the reduction in building-based day services. Regarding home care, there are broadly similar rates of usage across the four parts of the UK, with the number of adults with learning disabilities using home care now staying static or decreasing.Social implicationsSimilar policy ambitions across the four parts of the UK have resulted (with the exception of Northern Ireland) in similar trends in access to day services and home care.Originality/valueThis paper is a first attempt to compare national social care statistics concerning day services and home care for adults with learning disabilities across the UK. With increasing divergence of health and social service systems, further comparative analyses of services for people with learning disabilities are needed.

National Diabetes Audit 2015–2016 shows variations in care processes and targets

National Diabetes Audit 2015–2016 shows variations in care processes and targets

1085 - Testicular cancer in patients with learning disabilities in England from 2001-2015: A national cohort study

1085 - Testicular cancer in patients with learning disabilities in England from 2001-2015: A national cohort study