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Commentary on "The Confidential Inquiry into the deaths of people with learning disabilities: the story so far"
- Author:
- DAWKINS Beverley
- Journal article citation:
- Tizard Learning Disability Review, 16(5), 2011, pp.26-28.
- Publisher:
- Emerald
The National Officer for Profound and Multiple Learning Disabilities at Mencap considers in this article the potential impact of the Confidential Inquiry into the deaths of people with learning disabilities and the process of conducting the Confidential Inquiry as outlined in an article by Pauline Heslop and Anna Marriott (Ibid). The commentary discusses the Mencap report Death by Indifference, which exposed examples of unequal health care for people with learning disabilities and was one of the reports contributing to the call for the Confidential Inquiry. It also debates whether and how the inquiry process will address the issues of indifference and discrimination documented in the Mencap report. The author suggests that, as well as the findings of the inquiry, political will to change the way health services are delivered to people with learning disabilities in the future will be crucial.
The Confidential Inquiry into the deaths of people with learning disabilities - the story so far
- Authors:
- HESLOP Pauline, MARRIOTT Anna
- Journal article citation:
- Tizard Learning Disability Review, 16(5), 2011, pp.18-25.
- Publisher:
- Emerald
A Confidential Inquiry to review the deaths of all people with learning disabilities from the age of 4 onwards in Gloucestershire and the Avon area, and to determine whether the deaths of people with learning disabilities are premature or not, was commissioned by the Department of Health in 2010. Its main aim is to improve the standard and quality of care for people with learning disabilities and ultimately their health outcomes. It has been commissioned to run until March 2013. This paper by 2 participants in the work of the Confidential Inquiry outlines the process, covering the background, the team, and the inquiry aims, scope and methodology. It also discusses issues faced in conducting the Confidential Inquiry, including engaging with and involving professionals, maintaining confidentiality, and the tension between wanting to base the findings on a sufficiently large number of cases so that the findings are robust and reliable but also wanting to make immediate changes to any potentially modifiable factors found to contribute to the deaths of people with learning disabilities. The step-by-step process adopted in the inquiry is illustrated in an appendix.
Getting better in hospital
- Authors:
- LEEDS ANIMATION WORKSHOP, (Producer)
- Publisher:
- Leeds Animation Workshop
- Publication year:
- 2011
- Pagination:
- (13 mins.), DVD
- Place of publication:
- Leeds
Six short animated films about people with learning disabilities who need to go into hospital for different reasons. The films feature the following situations: going to A&E with a broken arm; going to the Diabetes clinic; needing an eye operation; being rushed to hospital with chest pains and having treatment for breast cancer. An easy read booklet is included in the pack.
Nonverbal Learning Disability explained: the link to shunted hydrocephalus
- Author:
- RISSMAN Barbara
- Journal article citation:
- British Journal of Learning Disabilities, 39(3), September 2011, pp.209-215.
- Publisher:
- Wiley
Children with a Nonverbal Learning Disability (NLD) resulting from shunted hydrocephalus and spina bifida face many difficulties not experienced by those with a language learning disability. It is believed to be caused by damage, disorder or destruction of neuronal white matter in the brain’s right hemisphere. This article examines the relationship between shunted hydrocephalus and nonverbal learning disability. By linking the medical condition to the learning disability, the article aims to reduce misunderstanding and false accusations of laziness. The article is designed to help teachers, psychologists, guidance officers, support workers, parents and disability service providers whose role is to understand and advocate for individuals with shunted hydrocephalus and spina bifida. Implications for future research and practice are presented.
Improving the health of people with learning disabilities: the role of health checks
- Authors:
- ROBERTS Hazel, et al
- Journal article citation:
- Learning Disability Today, February 2011, pp.32-34.
- Publisher:
- Pavilion
- Place of publication:
- Hove
The Learning Disabilities Observatory analysed data about the update of health checks for people with learning disabilities that was collected from PCTs by the Information Centre for Health and Social Care for 2008/09 and 2009/10. Figures indicated a increase in take up, with more work still to be done. A literature review was also conducted of studies that considered the impact of health checks on the health and wellbeing of people with learning disabilities. The review found strong evidence that health checks are effective in identifying health conditions. Gaps and areas for future research are also highlighted.
Inclusion and healthcare choices: the experiences of adults with learning disabilities
- Authors:
- FERGUSON Morag, JARRETT Dominic, TERRAS Melody
- Journal article citation:
- British Journal of Learning Disabilities, 39(1), March 2011, pp.73-83.
- Publisher:
- Wiley
Those with learning disabilities have fewer decision-making opportunities than the general population. This study investigated the decision-making experiences of two groups of individuals with a learning disability. Group 1 included irregular attenders who had opted out of healthcare appointments for avoidable reasons, and group 2 included regular attenders who had attended all appointments or not attended for unavoidable reasons. Interviews were carried out with 4 people with learning disabilities and/or their 13 primary carers. In addition to these interviews, physiotherapy staff participated in a focus group. Those with learning disabilities described experiences of and opportunities for making everyday decisions but mostly identified others as being responsible for making their health care choices. Overall, the paper concluded that a greater understanding of the health care expectations and experiences of individuals with learning disabilities, and those that support them, is required to enable people with learning disabilities as participants in their own health care decision-making processes.
Access to healthcare services by people with intellectual disabilities: a rural-urban comparison
- Authors:
- NICHOLSON Laura, COOPER Sally-Ann
- Journal article citation:
- Journal of Intellectual Disabilities, 15(2), June 2011, pp.115-130.
- Publisher:
- Sage
- Place of publication:
- London
Considering that access to healthcare services is difficult both for adults with intellectual disabilities and for people living in rural areas, it is likely that adults with intellectual disabilities in rural areas may be at an extra disadvantage. This study examined data from 39 rural and 633 urban participants from Scotland. Data on demographics, healthcare, and access to services were collected from face-to-face interviews and primary care notes. Analysis revealed that the rural sample to have significantly more contact with primary and secondary health care. However, contact with allied healthcare professionals was not significantly different, except that people in the rural sample were significantly more likely to have had recent contact with a dentist and an optician. The authors concluded that adults with intellectual disabilities in rural areas were not disadvantaged when compared to urban service users.
Is there a case for community learning disability teams considering the spiritual needs of people with learning disabilities?
- Author:
- WILSON Claire
- Journal article citation:
- Tizard Learning Disability Review, 16(3), 2011, pp.31-40.
- Publisher:
- Emerald
Scottish health guidance suggests that spirituality is part of healthcare. This study gathered the views of service managers, parents, faith-based professionals and service users about their experience of fostering the spiritual lives of people with learning disabilities (LD). Participants were from local faith-based groups for people with LD. The author asked: (1) whether this was a legitimate topic for healthcare professionals to enquire about during clinical contacts; (2) what they knew about related training issues; and (3) whether accessible information and communication passports might be helpful. Findings revealed support for the first and third questions, but little awareness of any training for health staff on spiritual matters. The author concluded that, by allowing more obvious pressing concerns to predominate, especially in the context of cutbacks, service managers may be overlooking a potential source of distress for service users.
Reliability and validity analysis of the Stay Well and Healthy! Health Risk Appraisal for persons with intellectual and developmental disabilities
- Authors:
- HAHN Joan Earle, ARONOW Harriet Udin
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 24(4), July 2011, pp.341-350.
- Publisher:
- Wiley
The Stay Well and Healthy! Health Risk Appraisal (SWH-HRA) tool was developed for assessing health and risks of persons with intellectual and developmental disabilities (IDD). It was developed in the context of a large pilot study of an in-home preventive healthcare programme for persons ageing with IDD. This paper presents the results of reliability and validity assessment of the SWH-HRA tool. The participants of the study were 201 adults with IDD aged 32 or older living in community settings who were assessed using the SWH-HRA upon entry into the pilot study. The reliability of the SWH-HRA tool was assessed using descriptive statistics, scale item analyses and correlation analyses. The findings support the tool’s overall reliability and validity for persons with IDD. They add support for continued use and testing of the SWH-HRA in randomised clinical control trials comparing SWH-HRA use to usual care with persons with IDD. Further psychometric testing is indicated with persons with other types of disabilities.
The learning disability health self-assessment: three years on
- Authors:
- SOCHOCKA Jackie, ANDERTON Jenny
- Journal article citation:
- Tizard Learning Disability Review, 16(2), April 2011, pp.18-22.
- Publisher:
- Emerald
This article describes the learning disability self-assessment and its development. It was designed to create an environment where people from partnership boards and other interested groups could work systematically alongside health and social care professionals to improve the health of people with learning disabilities in their community. The process has now been used in all 10 English regions, making it possible to identify innovative good practice, and also system and service deficits having an impact on the health of people with a learning disability. This article particularly looks at the progress made in Yorkshire and the Humber over the past 4 years to identify system and service deficits at year 1 and to determine the main factor in tackling these deficits to achieve service improvements by year 3. It concludes that self-assessment has strengthened commissioning and offered a foundation and rationale for service development. It has led to better local and regional governance, accountability and systematic reporting, and has been a catalyst for greater and more meaningful involvement and inclusion in the health economy of people with a learning disability and their families and carers.