HSSIB: Caring for adults with a learning disability in acute hospitals (2 November 2023)

Summary

The aim of this investigation and report is to help improve the inpatient care of adults with a known learning disability in acute hospital settings. It focuses on people referred urgently for hospital admission from a community setting, such as a person’s home or residential home.

In undertaking this investigation, the Health Services Safety Investigations Body (HSSIB) looked 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-base staff are supported to delivery person-centred care to people with a learning disability.

Content

Reference event

The investigation used as a reference event a patient safety incident involving a 79-year-old man who was recorded on his GP’s learning disability register as having a mild learning disability. After being admitted to hospital due to his worsening health. Throughout the patient’s stay, up to his death following a cardiac arrest, his individual needs were not always identified and reasonable adjustments to meet his care needs were not always made.

Findings

• 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.

Safety recommendations

As a result of this investigation, HSSIB recommended that NHS England should:

• Develops and issues learning disability liaison nursing service best practice and workforce guidance to all acute hospitals. This is to help local decision making about specialist learning disability provision and enable appropriate support for people with a learning disability and the staff who care for them.
• Ensure that the national learning disability improvement standards annual benchmarking survey for the care of people with a learning disability is continued for acute hospitals in order to help assure that local population needs are met.
• Commission the development and dissemination of guidance on the practical assessment of the mental capacity of people with a learning disability in acute hospitals. This is to ensure that appropriate decisions are made about the person’s care.
• With support from key stakeholders including the Professional Record Standards Body, work collaboratively to develop and publish a set of guidelines on information to be included in a health and care passport (which could be paper based, digital, or both) for people with a learning disability with consideration of the reasonable adjustments that people may need. This is to ensure the most current and accurate information about reasonable adjustments to the person’s care is accessible when and wherever it is needed.

Safety observations

HSSIB made four safety observations as a result of this investigation:

• Health and care providers can improve patient safety by ensuring that local configuration of electronic patient record systems consider the accessibility and usability of the digital record reasonable adjustments flag in patient records.
• Health and care curricula can improve patient safety by aligning with the national code of practice on statutory learning disability and autism training, when finalised.
• Health and care providers can improve patient safety by advocating for all people with a learning disability to have an up-to-date care passport.