Caring for adults with a learning disability in acute hospitals

The aim of this report is to help improve the inpatient care of adults with a known learning disability in acute hospital settings. A person with a learning disability has a reduced ability to understand new or complex information, learn new skills and live independently. In the UK, it is estimated that approximately 2% of adults have a learning disability. Providing equitable care to people with a learning disability is a priority for the NHS.

Health and care services are required to identify and record the specific needs of each person with a learning disability and any ‘reasonable adjustments’ they require, so they can be cared for safely and effectively. Reasonable adjustments are changes made by organisations to make it as easy for people with a disability to use services as it is for people who do not have a disability.

As an example, which is referred to as ‘the reference event’, HSSIB investigated the care of a man with a learning disability who was admitted to hospital because of worsening health. Throughout the patient’s stay, his individual needs were not always identified and reasonable adjustments to meet his care needs were not always made.

The reference event found a range of factors within the health and care system that may have influenced identifying the patient’s needs and providing reasonable adjustments to meet these needs. These related to: identifying, assessing, recording and sharing information about the patient’s learning disability and the reasonable adjustments he needed; supporting staff without specialist skills or experience in working with people with a learning disability; and the availability of support from a learning disability specialist in the hospital.

An investigation was undertaken to explore the factors affecting:

• the sharing of information about people with a learning disability and their reasonable adjustment needs following admission to an acute hospital
• how ward-based staff are supported to deliver person-centred care to people with a learning disability.

The investigation engaged with: people with lived experience; 10 acute hospitals with acute learning disability liaison services; a provider of specialist learning disability services; experts in learning disability; safeguarding and mental capacity staff; and national bodies that influence policy and strategy within the NHS (such as government departments and national charities).

• The health and care system is not always designed to effectively care for people with a learning disability.
• People with a learning disability who are admitted to an acute hospital are often cared for by staff without specialist training, skills and experience in working with people with a learning disability. These staff often have limited support and are unable to take the time they would like to meet the person’s needs.
• There is no standard model or national guidance for an acute learning disability liaison service (that is, teams that are specifically trained in caring for people with a learning disability). Consequently, there is variation in how these services are funded, their availability, the size of teams and what they are expected to do.
• The quality of learning disability services is currently monitored via the learning disability improvement standards annual benchmarking survey which is funded until the end of 2023/24. Decisions on future years have yet to be made.
• Staff in acute hospitals may lack confidence and support in assessing the mental capacity of people with a learning disability, in line with the Mental Capacity Act (2005).
• There is no national shared system with a single point of access for storing and managing information about the needs of people with a learning disability and the reasonable adjustments required for each individual.
• Current mechanisms for sharing information about a person – such as ‘care passports’ (a document that gives staff helpful information about the person’s health and social needs, including their preferred method of communication, likes and dislikes) and alert flags (a way to highlight key information to staff) on the electronic patient record – can be unreliable. Instead, information is often gathered from friends and family.
• Evidence exists that people with a learning disability experience health inequities. Long-held societal beliefs about the abilities of people with a learning disability may influence the provision of and decisions made around their care.

You can download an Easy Read version of this report. It does not include all of the original information, but it will tell you about the important parts.