CQC - Who I am matters: Experiences of being in hospital for people with a learning disability and autistic people (3 November 2022)

Summary

This report by the Care Quality Commission (CQC) looks what people with a learning disability and autistic people experience when they need physical health care and treatment in hospital.

People with a learning disability face huge inequalities when accessing and receiving health care, and initiatives to try and improve people’s experiences have not brought about improvement at the speed or scale needed. The consequences of this are serious, as when people do not get care and support that meets their individual needs, it can lead to avoidable harm and premature death. Equity for people with a learning disability and autistic people is therefore a critical patient safety issue.

Content

Key messages

People have a right to expect:

• access to the care they need, when they need it and that appropriate reasonable adjustments are made to meet people’s individual needs. This starts from the first point of contact with a hospital. This is not just good practice – it is a legal requirement.
• staff to communicate with them in a way that meets their needs and involves them in decisions about their care
• that they are fully involved in their care and treatment.
• the care and treatment they receive meets all their needs, including making reasonable adjustments where necessary and taking into account any equality characteristics such as age, race and sexual orientation.
• that their experiences of care are not dependent on whether or not they have access to specialist teams and practitioners.

However, the report highlights the following issues:

• People said they found it difficult to access care because reasonable adjustments weren't always made. Providers need to make sure they are making appropriate reasonable adjustments to meet people’s individual needs.
• There is no ‘one-size-fits-all’ solution for communication. Providers need to make sure that staff have the tools and skills to enable them to communicate effectively to meet people’s individual needs.
• People are not being fully involved in their care and treatment. In many cases, this is because there is not enough listening, communication and involvement. Providers need to make sure that staff have enough time and skills to listen to people and their families so they understand and can meet people’s individual needs.
• Equality characteristics, such as age, race and sexual orientation, risked being overshadowed by a person’s learning disability or autism because staff lacked knowledge and understanding about inequalities. Providers need to ensure that staff have appropriate training and knowledge so they can meet all of a person’s individual needs.
• Specialist practitioners and teams cannot hold sole responsibility for improving people’s experiences of care. Providers must make sure that all staff have up-to-date training and the right skills to care for people with a learning disability and autistic people.