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This paper aims to present data about access to and use of health and social care services by adults with learning disabilities during the COVID-19 pandemic in England, Northern Ireland, Scotland and Wales.

Data were collected in three waves between December 2020 and September 2021 and concerned the use of health and social care services during the COVID-19 pandemic. Data were collected at one or more time-points directly from 694 adults with learning disabilities and through separate proxy reports by family carers and paid support staff of another 447 adults with learning disabilities.

Many people with learning disabilities who reported regularly accessing services/supports pre-pandemic were not receiving them during the timeframe of this study. There were indications of increasing access to some services and supports between Wave 2 and 3, but this was not universal.

People in Cohort 2, who were likely to have severe/profound learning disabilities, were less frequently reported to access online community activities than people in Cohort 1, which is likely to exacerbate existing social isolation for this cohort and their family carers. Service providers should seek to ensure equitable access to services and activities for all people with learning disabilities in the event of future lockdowns or pandemics.

This is the largest longitudinal study about the impact of the COVID-19 pandemic on health and social care services for adults with learning disabilities in the UK. We primarily collected data directly from adults with learning disabilities and worked with partner organisations of people with learning disabilities and family members throughout the study.

Direct payments in mental health services have come a long way in the last few years, but are personal budgets and the increasing prominence of social care in policy terms having detrimental effects on their success? While most people agree that direct payments are a good idea, in reality less than five per cent of those eligible to use community care services actually use them. Realising the government's intention of ‘prevention, early intervention, enablement, and high quality personally tailored services’ still has a way to go.

Transition to adulthood can be a difficult time for all young people and their families, but young people with learning disabilities face additional stresses. Transition for young people with learning disabilities is highly topical, in relation to both policy and practice. Legislation and guidance offer various mechanisms for improving transition, including transition planning, health action planning and Connexions personal advisers. This study of 283 families with youngsters with learning disabilities found that existing legislation and guidance were largely failing youngsters with learning disabilities and their families at transition. There were substantial discrepancies between what ought to have been provided and what young people and their families experienced in practice, and significant difficulties as youngsters moved between children's and adult health and social services. Other difficulties experienced at transition are also reviewed, along with possibilities for improvements in practice.

This article reports on support that people with learning disabilities who self‐injure say they have found, or would find, helpful in relation to their self‐injury. It is an important issue, because most interventions and approaches are based on past patterns of support or what professionals think is helpful or appropriate. Rarely has the voice of the person concerned been heard. The clear message from people with learning disabilities, including those who use little or no verbal communication, is that they want opportunities to communicate their feelings and to be listened to. Being open to listening and developing one's own communication skills is essential for supporters of people with learning disabilities who self‐injure.

Young people with learning disabilities frequently experience mental health support needs, especially at the transition stages as they move into adulthood. The Count Us In inquiry (Carpenter, 2002) suggested that the prevalence rate for mental health needs in young people with learning disabilities may be as high as 40%, four times as high as for young people in general. This paper reports on an action research study in Somerset which was funded by the Foundation for People with Learning Disabilities. The study followed young people and practitioners in adopting a largely social model of mental health distress. It focused on positive emotional support, and worked with young people themselves to find new ways of tackling these issues. Young people in the study said that the support they most valued was that gained through friendships. A small, self‐selecting group of students worked with the project, and they designed and piloted a short course about emotional support for other young people. The findings show that this was effective in helping the young people talk more freely about their feelings, and build their confidence and mutual trust. This article argues that, by developing their own self‐determination, young people with learning disabilities can build their resilience to emotional problems and take more control over their own lives.

Psychotropic medications are a treatment commonly used for people with learning disabilities. Legislation and guidance suggest that, for a person to give informed consent to treatment, they must have knowledge of the potential treatment. This study of 21 people with learning disabilities, and their carers and prescribers, living in four different regions of England, suggests that few of the people with learning disabilities were fully informed about their treatment. Many of their carers said that although they knew how to administer the medication, they knew little about why the person was taking it and what the implications might be. Despite this, people with learning disabilities made the general assumption that carers would, or should, know everything about their medication. The current provision of information to people with learning disabilities and carers was found to be poor. Four key strategies identified in supporting people with learning disabilities in obtaining information about medication were spending more time providing and reiterating key information, providing accurate, up‐to‐date, accessible information about medications, providing training for carers in wider aspects of medication usage, and tailoring information to each person's individual needs.

This paper seeks to provide a commentary on the previous paper in this issue “Does he have sugar in his tea? Communication between people with learning disabilities, their carers and hospital staff”.

This commentary outlines some “reasonable adjustments” for people with learning disabilities in primary and secondary care.

The paper finds that there is a potential for Hospital Passport‐type documents to provide a better link between individuals and primary and secondary healthcare services.

The paper suggests that one way of helping to improve outcomes for people with learning disabilities would be to work more creatively across traditional boundaries.

This paper aims to outline the process of undertaking the Confidential Inquiry (CI) into the deaths of people with learning disabilities and discusses three particular issues: engaging with 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 CI into the deaths of people with learning disabilities reviews the deaths of all people with learning disabilities living in the (former) Avon and Gloucestershire areas. It has been commissioned by the Department of Health to run until March 2013. One of the key drivers for a CI has been the work of Mencap in exposing the unequal health care that some people with learning disabilities received in the NHS.

The principal goal of the CI is to improve the standard and quality of care for people with learning disabilities and ultimately their health outcomes. The CI team aims to detect potentially modifiable contributory factors in the care of a person with learning disabilities who has subsequently died, share any examples of good practice in their care and provide information to guide the commissioning of services.

It is anticipated that the findings of the CI will provide a considerable amount of evidence on which to improve the standard and quality of care for people with learning disabilities and ultimately their health outcomes.

The purpose of this paper is to present data about the experiences of adults with learning disabilities during the COVID-19 pandemic across the UK.

Interviews were conducted with 609 adults with learning disabilities. Family carers and support staff of another 351 adults with learning disabilities completed a proxy online survey. The data were collected between December 2020 and February 2021 and concerned both worries/negatives and anything positive that had happened because of the COVID-19 pandemic.

Social isolation was the most commonly reported worry/negative for adults with learning disabilities, with other frequently reported worries/negatives including: changes to/loss of routine; loss of support/services; and decreased health/well-being/fitness. A large proportion of participants indicated that nothing positive had happened because of COVID-19, but some positives were reported, including: digital inclusion; more time spent with important people; improved health/well-being/fitness; and, a slower pace of life.

Future pandemic planning must ensure that adults with learning disabilities are supported to maintain social contact with the people who matter to them and to support their health and well-being (including maintaining access to essential services and activities). Some adults with learning disabilities may benefit from additional support to improve their digital confidence and access. This may in turn enable them to maintain contact with family, friends and support services/activities.

This is the largest study about the experiences of adults with learning disabilities during the COVID-19 pandemic in the UK. The authors primarily collected data directly from adults with learning disabilities and worked with partner organisations of people with learning disabilities throughout the study.