Leading learning disabilities research advocate Irene Tuffrey-Wijne uses her role to ‘shout about’ the need to involve service users in healthcare decisions that affect them
Irene Tuffrey-Wijne has made it her life’s mission to campaign on behalf of people with learning disabilities and autism when it comes to end of life care and bereavement. To read the full article, log in using your MPFT NHS OpenAthens details.
This is an important judgement as it further clarifies what is an acceptable care setting. The appearance of the proposed service did not match with the residential area it was located within and was too big - there was a supported living service on the same site. This did not promote integration with the local community.
A cross-sectional study examined data from the national census to explore links between learning disability and autism on mental health and poor general health. To read the full article, log in using your MPFT NHS OpenAthens details.
Book Review. A blend of personal and family experiences, and research evidence, this book focuses on girls and women on the autism spectrum, an area that has up to now been neglected. To read the full article, log in using your MPFT NHS OpenAthens details. To read a copy of the book in this review, please contact the library
he Chair of the UK Parliament’s Human Rights Committee, Harriet Harman MP, has written to the Chief Executive of NHS England, Simon Stevens, with questions about the roles and responsibilities of its Commissioners for St Andrews and Whorlton Hall, two institutions for people with learning disabilities and autism recently closed or put in special measures.
Intellectual disability (ID) is associated with polypharmacy particularly off‐label psychotropics for “challenging behaviour.” NHS England introduced the “stopping over medication of people with a learning disability (LD), autism or both” (STOMP) initiative. As ID services are a professionally diverse group, it is important to know whether teams have suitable knowledge to deliver STOMP. The impact of delivering bespoke STOMP training was evaluated.. To read the full article, log in using your NHS Athens details. To access full-text: click “Log in/Register” (top right hand side). Click ‘Institutional Login’ then select 'OpenAthens Federation', then ‘NHS England’. Enter your Athens details to view the article.
The Committee is undertaking an inquiry into the inappropriate placement of children and adults with learning disabilities and/or autism in mental health hospitals, and the threat that such placements pose to their human rights.
This report gives the interim findings from our review of the use of restrictive interventions in places that provide care for people with mental health problems, a learning disability and/or autism.
Soccer is the world's most popular sport. The present authors evaluated the effect of the Game of Life (GOL) soccer initiative on soccer skills, fitness and mobility of adults with intellectual disability (ID) and autism spectrum disorder (ASD).. To read the full article, log in using your NHS Athens details. To access full-text: click “Log in/Register” (top right hand side). Click ‘Institutional Login’ then select 'OpenAthens Federation', then ‘NHS England’. Enter your Athens details to view the article.
Anne Longfield, the Children’s Commissioner for England, is today publishing a new report, ‘Far less than they deserve: Children with learning disabilities or autism living in mental health hospitals’. The report shows how too many children are being admitted to secure hospitals unnecessarily – in some cases are spending months and years of their childhood in institutions when they should be in their community. It warns that the current system of support for those with learning disabilities or autism is letting down some of the most vulnerable children in the country.
The Care Quality Commission (CQC) is calling for an independent review of every person who is being held in segregation in mental health wards for children and young people and wards for people with a learning disability or autism. These reviews should examine the quality of care, the safeguards to protect the person and the plans for discharge.
The Chair of the UK Parliament Human Rights Committee, Harriet Harman MP writes to the Health Secretary Matt Hancock MP regarding abuse towards vulnerable adults at a hospital in County Durham.
Although parental stress is higher for children with neurodevelopmental disorders (NDs), it is unclear how this stress compares to more common NDs. The current study compared stress in parents of children with Williams syndrome (WS), Down syndrome (DS) and autism spectrum disorders (ASD). The impact of individual and contextual factors was also explored.. To read the full article, log in using your NHS Athens details. To access full-text: click “Log in/Register” (top right hand side). Click ‘Institutional Login’ then select 'OpenAthens Federation', then ‘NHS England’. Enter your Athens details to view the article.
To determine the level of evidence on the effectiveness of health coaching for parents of children with disabilities.. To read the full article, log in using your NHS Athens details. To access full-text: click “Log in/Register” (top right hand side). Click ‘Institutional Login’ then select 'OpenAthens Federation', then ‘NHS England’. Enter your Athens details to view the article.
Several studies have investigated whether in utero exposure to selective serotonin reuptake inhibitors (SSRIs) is associated with increased risk of developing mental‐ or behavioral disorders. The aim of this study was to perform a systematic review and meta‐analysis based on this literature.. To read the full article, log in using your NHS Athens details. To access full-text: click “Log in/Register” (top right hand side). Click ‘Institutional Login’ then select 'OpenAthens Federation', then ‘NHS England’. Enter your Athens details to view the article.
The Learning Disability Employment Programme recently held two webinars which were facilitated by the National Development Team for Inclusion (NDTi) to help support NHS organisations to employ more people with a learning disability and/or autism. The webinars were recorded and are now available to watch anytime.
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Describes a system to track prescribing of antipsychotics, antidepressants and other psychotropics for people with learning disabilities, autism or both.
Emeritus Professor Alan Glasper, University of Southampton, discusses a new initiative for additional training for health professionals in England. An open consultation is inviting nurses and others to comment on the proposals. To read the full article, log in using your MPFT NHS OpenAthens details.
The use of restraint has been a popular topic in the care sector in recent years, with restrictive practice increasingly seen as unacceptable unless in extreme cases to prevent harm. The Government’s policy Positive and Proactive Care came into place in 2014, after the Winterbourne View abuse scandal. But even to date many organisations fall behind the standards outlined in this document.
Children with special educational needs and disabilities (SEND) comprise about 14.6 % of pupils in England. Research shows that aspects of relationships and sexuality education (RSE), both formally and informally, have tended to be low priority for professionals and parents of these children. Proposed government changes to RSE policies in all schools in England will take effect from September 2020. To read the full article, log in using your MPFT NHS OpenAthens details.
Systematicity principle, used during analogical reasoning, enables building up deeper abstract concepts as part of structure mapping. The purpose of this study was to investigate structure mapping processes that occur during acquisition of new relational categories and to identify the learning patterns and systematicity of children with autism spectrum disorder (ASD) compared with intellectual and developmental disabilities (IDD) and typical development (TD). Comparison effect and level of familiarity were used to investigate structural mapping processes.. To read the full article, log in using your NHS Athens details. To access full-text: click “Log in/Register” (top right hand side). Click ‘Institutional Login’ then select 'OpenAthens Federation', then ‘NHS England’. Enter your Athens details to view the article.
The government wants to know how we can make sure that health and social care staff have the right training to understand the needs of people with a learning disability and autistic people, and make reasonable adjustments to support them.
We have worked with NHS England on a programme to ensure children and young people with a learning disability, autism or both are able to access appropriate medication, and are not prescribed inappropriate psychotropic medication. Find out more and read our full pledge.
The Joint Committee on Human Rights takes evidence from the NHS and the Care Quality Commission for their inquiry into the conditions in learning disability inpatient units.
The purpose of this paper is to examine data on absences and exclusions from school amongst children with learning disabilities and autistic children in England in 2016/2017. Design/methodology/approach: Data were drawn from Department for Education statistics for the school year 2016/2017 on school absences (authorised and unauthorised) and school exclusions (fixed-period and permanent) for children in the primary special educational needs categories of moderate learning difficulty (MLD), severe learning difficulty (SLD), profound and multiple learning difficulty (PMLD) and autistic spectrum disorder (ASD). Please contact the library to receive a copy of this article - http://bit.ly/1Xyazai
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As part of its inquiry into detention, the Joint Committee on Human Rights will hold two evidence sessions about the treatment of people with learning disabilities and autism in Assessment and Treatment Units (ATUs) and other inpatient units.
The Joint Committee on Human Rights hears from people with learning disabilities who have been detained, and from family members of people with autism who have been detained.
Little is known about the population prevalence of co‐occurring intellectual disabilities and autism, and its impact on general health status. The study aimed to investigate this, in comparison with the general population in Scotland.. To read the full article, log in using your NHS Athens details. To access full-text: click “Log in/Register” (top right hand side). Click ‘Institutional Login’ then select 'OpenAthens Federation', then ‘NHS England’. Enter your Athens details to view the article.
Letter from the Department of Health and Social Care and NHS England. It reminds health and social care employers of their statutory obligations in terms of staff training, following the Learning Disability Mortality Review Programme (LeDeR) 2nd annual report.
In response to the report, the government committed to writing to employers and professional groups to promote greater awareness of the Learning Disabilities Core Skills Education and Training Framework.
Childhood neurodevelopmental disorders such as attention deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD) and intellectual disability (ID) typically are complex, heterogeneous, conditions that show considerable clinical overlap.1 There are both genetic and environmental contributions to their aetiology, which are not yet fully elucidated. However, immense progress has been made in our understanding of their genetic basis in the last two decades. This short review aims to synthesise the key findings in this regard, with a focus on some of the factors that are most relevant to clinical practice.. To read the full article, log in using your NHS OpenAthens details.
This statistical release makes available the most recent data relating to patients with learning disabilities and/or autism spectrum disorder receiving inpatient care commissioned in England.
The aim of the current study was to identify functional predictors of perceived impact of childhood disability among families of children with neurodevelopmental disorders and disabilities. We first examined the relationship between sub‐domains of adaptive and problematic behaviour and perceived family impact. Second, we examined whether the same sub‐domains would emerge as significant after controlling for the impact of child diagnosis, including autism spectrum disorder, cerebral palsy and intellectual disability.. To read the full article, log in using your MPFT NHS OpenAthens details.
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This guide is applicable to all adults whose care is commissioned in an area that is different from where they hold ordinary residence, including those whose services are governed by the Mental Health Act.
The So What, What Next? project was designed by the Transforming Care empowerment steering group to look at ways of supporting people with a learning disability or autism who have recently been discharged from hospital to explore their skills and passions and to find ways to contribute these to their local communities.
This statistical release makes available the most recent data relating to patients with learning disabilities and/or autism spectrum disorder receiving inpatient care commissioned in England.
Parents often face many barriers when taking care of their offspring with disabilities. In childhood, support needs vary with families of children with Down syndrome often reporting less caregiving challenges. However, it is unclear whether support needs vary in adulthood. This study compared parents of adults with Down syndrome (DS), autism spectrum disorder (ASD) and cerebral palsy (CP) regarding support needs of their offspring with intellectual and developmental disabilities (IDD) and their families.. Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
Self‐injurious behaviour is a debilitating characteristic that is commonly expressed in people with autism and other neurodevelopmental disorders, but the neurobiological basis of this maladaptive behaviour is not understood. Abnormal dopaminergic and glutamatergic neurotransmission has been implicated, especially in relation to basal ganglia and mesocorticolimbic circuits. As neurotensin is an important modulator of dopamine and glutamate in these circuits, we investigated its potential role in vulnerability for self‐injury, using the pemoline model in rats.. To read the full article, log in using your MPFT NHS OpenAthens details. SSOTP (legacy account) - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
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Transition from child-centred to adult-oriented health services occurs at a time when young people are going through adolescence, with all the excitement and uncertainty that accompanies it. Most elements of good transitional care for young people with disabilities are the same as those for all young people with long term conditions.
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A new report outlines the challenges and solutions to moving people with learning disabilities, autism and/or mental health conditions out of long-stay inpatient care.
The report from VODG (Voluntary Organisations Disability Group), Transforming care – the challenges and solutions, addresses NHS England’s policy ambition to enable people to move from inpatient settings, closer to their homes.
merging evidence suggests that children with fragile X syndrome (FXS) exhibit abnormal gesture use early in development, although few studies have investigated the emergence of gesture use in this population or the impact of autism spectrum disorder (ASD) features on these behaviours. The present study examined the longitudinal development of gesture use in infants with FXS relative to low‐risk controls and infant siblings of children with ASD (high‐risk siblings), with the goal of establishing potentially unique patterns of gesture development in infants with FXS and understanding the relative impact of ASD symptom severity on these patterns.. To read the full article, log in using your SSSFT NHS OpenAthens details. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
Hyperactivity and repetitive behaviour are characteristic features of fragile X syndrome (FXS). However, little is known about the influence of autism symptomatology on how these characteristics develop over time. We investigate the profiles and developmental trajectories of overactivity, impulsivity and repetitive behaviour, in males with FXS over three time points spanning 8 years.. To read the full article, log in using your SSSFT NHS OpenAthens details. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
NHS England is today (25 April 2018) asking more doctors and health care professionals to sign up to a pledge to stop the overmedication of people with a learning disability, autism or both.
The renewed drive to widen support for Stopping OverMedication of People with a Learning Disability (STOMP), is being backed by the government and will target NHS trusts, CCGs and those in the independent sector, to review and seek alternatives to prescribing psychotropic drug prescriptions.
The future of Learning Disability and Autism services within England is a priority in the Five Year Forward View.
As a crucial part of this work, we are asking all service providers who provide Learning Disability & Autism services to complete a survey regarding the Learning Disability & Autism workforce.
Obesity and lack of physical activity are frequently reported in persons with intellectual disability (ID) or autism spectrum disorder (ASD). We hypothesised a higher prevalence of diabetes and hypertension in this population.. To read the full article, log in using your SSSFT NHS OpenAthens details. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
The Department of Health is consulting on draft guidance on reducing the need for restraint and restrictive intervention for children and young people with learning disabilities, autistic spectrum disorder and mental health needs.
Although the benefits of a range of disability-centric therapies have been well studied, little remains known about how they work, let alone how to monitor these benefits in a precise and reliable way. To read the full article, log in using your SSSFT NHS OpenAthens details. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
A research team, led by Drexel University in Philadelphia, used three analytical methods to look at 273,107 mother-child pairs in Stockholm, Sweden The children were age four to 14 and had been born between 1996 and 2007.
Women had reported their use of folic acid, iron and multivitamin supplements at their first antenatal visit and cases of child autism spectrum disorder (ASD) were identified from national registers.
The researchers found multivitamin use was associated with a lower likelihood of child ASD with intellectual disability. No consistent evidence was found for iron or folic acid contributing to reduced risk.
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Little is known about sport participation in youth with Autism Spectrum Disorder (ASD). The current study examined sport characteristics (frequency, diversity, positive social experiences [PSE]) for youth with ASD and intellectual disability compared to youth with intellectual disability alone and explored the personal and contextual correlates of involvement. Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
Acting as an advocate for someone with special needs can help defuse potentially volatile situations, says retired nurse Vanessa Martin, an RCN fellow and RCN Foundation trustee
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This document provides guidance for Transforming Care Partnerships (and their local partners Clinical Commissioning Groups / Local Authorities) in commissioning support and services for children and young people with learning disability, autism or both.
Aimed at supporting people with sight loss, hearing loss, autism or learning disabilities, a series of new guides have been developed to help patients use GP services online such as book appointments, repeat their prescriptions and view medical records.
Lancashire Care’s Children and Adolescent Mental Health Service (CAMHS) is pioneering a novel idea to promote inclusion and participation among young service users with learning disabilities or autism by including them on the interviewing panel for recruiting new members of staff.
People with fragile X and autism share common needs. In both conditions, for example, individuals can respond too readily to sensory stimulation, in the case of people with fragile X especially, this oversensitivity is due to overexcitement of the neurones. The overstimulation of the neuronal pathways leads to seizures and sensory hypersensitivity.
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People who have learning disabilities and/or autism are some of the most vulnerable people in society. What then about those who have learning disabilities and/or autism and who have committed sexual offences? How do the health, social care and criminal justice systems treat them and how can those services be improved when staff do not even speak a common professional language?
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The assessment of autism in individuals with mild intellectual disabilities (MID) is complicated because of the overlap between autistic traits and intellectual limitations. Impaired social emotional reciprocity is a core diagnostic criterion for autism. However, it is unknown whether reciprocal behaviour differs between MID individuals with or without an autism spectrum disorder (ASD). This study explored differences in reciprocal behaviour of 35 children and adolescents with MID ...Login using your SSSFT NHS OpenAthens details for full text.
Adults with intellectual disabilities and/or autism are often excluded from participating in health and healthcare research. Understanding study information, which is an important aspect of demonstrating capacity to give informed consent, can be a particular challenge. This study surveyed clinical researchers to discover: (i) their experiences of assessing mental capacity for research; (ii) what methods they used to facilitate the inclusion of adults with intellectual disabilities and/or autism; and (iii) their views about a proposal to develop new resources to facilitate mental capacity judgements with adults with intellectual disabilities and/or autism for informed consent for research. Login using your SSSFT NHS OpenAthens details for full text.
This week, 7 Days of Action is focusing on the increasing role of independent sector companies in driving these inpatient services for people with autism and/or learning difficulties, combining rigorous analyses of what’s happening with people’s experiences of dealing with services provided by these companies. A report, A Trade in People: The inpatient healthcare economy for people with learning disabilities and/or Autism Spectrum Disorder published by the Centre for Disability Research at Lancaster University and led by Mark Brown of the 7 Days of Action campaign summarises some of these analyses and experiences.
The Green Light Toolkit has been rolled out across the Trust over the last 18 months, and focuses on making reasonable adjustments to improve the care which people with learning disabilities and autism receive, such as providing easy read patient leaflets and care plans. The Trust is sharing information about the changes it has made during Equality, Diversity and Human Rights Week, which runs until Friday.
We’ve just heard that SSOTP will not be renewing their agreement with SSSFT LKS for library services for this financial year. Because of this we will be reviewing our Be Aware bulletins. Sadly we won’t be accepting any new sign-ups from SSOTP staff and will be withdrawing some of the physical healthcare bulletins that we…
NHS England has worked with self-advocacy groups to produce a film helping people with a learning disability, autism or both, to understand more about NHS 111. The film is also being used during training for the services’ advisers to help them better understand the needs of people with a learning disability, autism, or both.
A new social worker pilot scheme has been unveiled to tackle the lack of continuity of social workers for people with learning disabilities, autism and mental health. Login using your SSSFT NHS OpenAthens details for full text. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you requesting.
People with autism, learning disabilities and mental health issues – and their carers – often have to face the challenge of having a lack of continuity of social workers. It can be frustrating and it can lead to bad physical health. A new initiative – the Named Social Work pilot scheme – is addressing this by creating the role of a single named social worker. An interim report on the project’s progress is launched today.
SSSFT staff can use the OVID link, or you can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
Friday 30 December at 11am sees a ‘relaxed’ performance, specifically designed to welcome families and groups who would benefit from a more relaxed environment, including people with an Autism Spectrum Condition, sensory and communication disorders, or a learning disability. Theatre lighting, special effects and sound levels will also be adjusted to reflect the audience’s needs.
Recent research suggests that around 16% to 18% of children with Down syndrome (DS) also meet diagnostic criteria for autism spectrum disorder (ASD). However, there are indications that profiles of autism symptoms in this group may vary from those typically described in children with ASD. Login using your SSSFT NHS OpenAthens for full text. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
Mark's story is the first in a short series of articles that describe quality of life and behaviour change outcomes for individuals referred to the Positive Behavioural Support Service (PBSS) described in previous issues of this journal (Toogood et al, 2015a; Toogood et al, 2015b). Mark was engaging in high rate, high risk challenging behaviour and his placement with local foster parents was in jeopardy, putting him at risk of long-term residential care. Login using your SSSFT NHS OpenAthens details for full text. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you requesting.
The Shared Lives model will support people who have needs which make it hard for them to live on their own. This is achieved by matching them with a Shared Lives carer to share their family and lives, receiving care and support in the community. People using Shared Lives may have a learning disability, dementia, mental health problem or other needs which need long or short term support. It will offer them the opportunity to either live with their matched and approved Shared Lives carer, or visit them regularly for day support or overnight breaks.
CHANGE is working in partnership with the Patient Information Forum to understand and prevent the overuse of anti-psychotic medication for people with a learning disability/autism. NHS England found that 72% of people with a learning disability have been prescribed anti-psychotic medication, but only 29% of people have a record of severe mental illness. We believe that by improving patient communication, this will support people with a learning disability to have more choice and control.
CHANGE, with PIF & NHS England, have published a report investigating the over use of anti-psychotic medication for people with a learning disability and/or autism.
The purpose of this research was to examine effects of a therapeutic recreation (TR) program designed to increase executive function (EF), social skills, adaptive behaviours and well-being of adults with autism spectrum disorder (ASD) and intellectual disability (ID). Login using your SSSFT NHS OpenAthens for full text. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
Community participation is associated with a range of positive developmental outcomes; however, the frequency, depth and resources associated with participation for youth with intellectual disability (ID) and autism spectrum disorder (ASD) are not well understood. Login using your SSSFT NHS OpenAthens for full text. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
To investigate the prevalence of autism spectrum disorder (ASD) and attention-deficit–hyperactivity disorder (ADHD) in a population-based group of children and adolescents with Down syndrome, and to relate the findings to level of intellectual disability and to medical conditions. Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
Local plans to transform care for people with a learning disability and/or autism have been published today, backed by millions of pounds of dedicated funding announced by health and care leaders.
Come and visit our first pop-up library at Severn Fields, Shrewsbury 19th July 11.00am-3.00pm. Join the library, borrow and return books, get help finding information and evidence, set up an Athens account, find out what the library can do for you and your team.
New guidance launched today will support prescribing healthcare professionals to review inappropriate prescriptions for people under their care who have a learning disability and/or autism.
Participation in social and physical activities has a number of benefits for children with or without disabilities. However, individuals with disabilities are often excluded from taking part in social activities. Most of the research on activity participation has focused on adults or youth with milder disabilities. However, children and adolescents with severe and complex needs, including those with autism, are often excluded from this type of research because of their complexities and level of functioning. Thus, we examined the social participation and friendships of children and adolescents with severe developmental disabilities, with and without autism, compared with peers without developmental disabilities. Login using your SSSFT NHS OpenAthens for full text. SSOTP - request a copy of the article from the library - http://bit.ly/1Xyazai
Identification of Autism Spectrum Disorder (ASD) in persons with intellectual disability (ID) is challenging but essential to allow adequate treatment to be given. This study examines whether the combination of two ASD screening instruments specifically developed for persons with ID, namely, the Diagnostic Behavioral Assessment for ASD—Revised (DiBAS-R) and the Autism Checklist (ACL), improves diagnostic accuracy when used in combination compared to the application of the single instrument. Login using your SSSFT NHS OpenAthens for full text. SSOTP - request a copy of the article from the library - http://bit.ly/1Xyazai
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OF THE 700,000 people in the UK with autism, between 60% and 70% also have learning disabilities, while between 25% and 40% of people with learning disabilities also have mental health problems.These conditions are associated with stigma, discrimination and low self-esteem, which can make living independent lives or working in fulfilling jobs seem like impossible goals. In this context, assistive technology can have an important role by helping to foster a growth in independence. Login using your SSSFT NHS Athens for full text. SSOTP - request a copy of the article from the library http://www.sssft.nhs.uk/library
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