Consent to treatment
How to read the stories

Consent to treatment

The advice that follows is based on Seeking Consent: Working with People with Learning Disabilities (Department of Health, 2001) and the Mental Capacity Act (2005) Code of Practice. The situation is different in other jurisdictions such as Scotland, Canada and the USA. You should check the position in your country or state. In Scotland, for example, consent is covered by the Scottish Executives’ Adults with Incapacity (Scotland) Act 2000.

For the patient’s consent to be valid, the patient must be:

capable of taking that particular decision (‘competent’)
acting voluntarily (not under pressure or duress from anyone)
provided with enough information to enable them to make the decision.

In English law, adults are always presumed to be capable of taking health care decisions, unless the opposite has been demonstrated.

It should never be assumed that people are not able to make their own decisions, simply because they have learning disabilities. In addition it should never be assumed that a person is not able to make a decision unless all practical steps to support them have not worked.

Information needs to be provided in a form that the patient can understand. This means explaining what is involved in simple terms and short sentences, and being willing to repeat or reword explanations. It may involve using pictures such as the ones in this book. The person may be able to repeat the information to you in their own words or they may show that they understand by their behaviour, for example by rolling up their sleeve for a blood test.

Capacity to consent

For people to have capacity to take a particular decision they must be able to:

comprehend and retain information material to the decision, especially the consequences of having or not having the intervention in question
use and weigh this information in the decision-making process.

Capacity to consent should not be confused with an assessment of the reasonableness of the patient’s decision.

How to read the stories

There is no right or wrong way to read the stories.

Some people are not used to reading stories. Start at the beginning and read the story in each picture. Encourage the reader to move through the pages at their own pace.
Encourage the person to tell the story in their own words. You will discover what they think is happening, what they already know, and how they feel. If you are using the pictures to help explain a procedure to someone, you may need to describe or clarify the actions being shown in each picture to help them understand. Try not to challenge the reader(s) or suggest their ideas are wrong.
Some pictures may be more difficult to understand. It can help to prompt the people you are supporting, for example:
• Who do you think that is?
• What is happening?
• How is he or she feeling?
• Do you feel like that? Has it happened to you/ your friend/ your family?
Allow people enough time to follow the pictures at their own pace. Allow time for discussion of each picture.
Some people may benefit from reading the larger story from which the extract has been taken. This will allow them to explore their feelings and experiences in more depth. To buy the complete book, follow the link to the bookshop that appears at the end of the story.