Experts with lived experience of having a learning disability offer advice on the importance of obtaining informed consent

People need clear descriptions of the risks, benefits and alternatives to medical interventions so that they can truly give informed consent.

Practitioners should assume capacity and make reasonable adjustments when asking for consent unless they have conducted a Mental Capacity Assessment (MCA) which has confirmed that the person having the operation or procedure does not have capacity to make the decision.

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Worryingly, one quarter of the people with a learning disability who died in England in 2022 did not have a MCA which was required as part of their treatment.

‘If informed consent is not done right, it can cause a lot of grief or anger, or it could turn into a court case’

Richard Keagan-Bull, research assistant, Kingston University

It is important that informed consent processes are improved for people with a learning disability. This requires clear, open and sensitive communication taking place in relaxed contexts. We can learn much from listening to what people with a learning disability have to say about this.

‘It is important to talk to the person with a learning disability first’

Experts with lived experience Amanda Cresswell (AC) and Richard Keagan-Bull (RKB), who have a learning disability, provide some advice on how nurses can get informed consent right.

‘It is sometimes like we don’t exist. It is important to talk to the person with a learning disability first.’ [AC]

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‘You need to talk to us in a way we can understand. You can use Books Beyond Words, sign language or pictures. Have a few goes every so often. Nurses should be clear and open about things [informed consent]. They should make us feel relaxed. You could make it into a game.’ [RKB]

‘They are serious conversations, but they are very important. When I was told I had cancer I was shocked, but I was glad that I found out what was going wrong. Don’t feel nervous telling someone that they need to have an operation because it could save their life.’ [AC]

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‘If informed consent is not done right, it can cause a lot of grief or anger, or it could turn into a court case.’ [RKB]

Amanda Cresswell, research assistant, Kingston University, London

Richard Keagan-Bull, research assistant, Kingston University, London

Jonathon Ding, research assistant, Kingston University, London and King’s College London