1.3 Explain ways to support an individual to give informed consent in line with legislation, policies and guidance

This guide will help you answer 1.3 Explain ways to support an individual to give informed consent in line with legislation, policies and guidance.

Informed consent is a fundamental legal and ethical principle in healthcare. It empowers individuals to make decisions about their care and treatment after understanding all relevant information. For individuals with learning disabilities, additional effort may be required to ensure they can give informed consent. Supporting someone to give informed consent means ensuring they understand the information, feel comfortable asking questions, and are free to make their own decisions without pressure.

What is Informed Consent?

Informed consent means that an individual agrees to a proposed plan of care or treatment after they fully understand what it involves. This includes:

• The purpose of the treatment or procedure.
• Potential risks and benefits.
• Any alternative options available.
• The consequences of refusing treatment.

Consent must be given voluntarily, without coercion or undue influence. It can be provided verbally, in writing, or even non-verbally (e.g., through gestures).

For people with learning disabilities, ensuring their understanding may take extra time, and the way information is presented should be adjusted to meet their specific needs.

Why is Informed Consent Important?

Informed consent is not just a courtesy—it is a legal requirement and a key part of respecting an individual’s rights. Without informed consent, any medical intervention could be considered unlawful and a breach of a person’s human rights.

In England, the following legislation, policies, and guidance underpin the issue of informed consent:

Mental Capacity Act 2005 (MCA)

The MCA is a primary piece of legislation governing consent. It operates on the following principles:

1. Assumption of capacity: Every adult is presumed to have the capacity to make decisions unless proven otherwise.
2. Support to make decisions: People must be given all the help they need to understand and make a decision.
3. The right to make unwise decisions: A person’s decision should not be overridden simply because it is deemed unwise or unconventional.
4. Best interests decision-making: If a person lacks capacity, decisions made on their behalf must be in their best interests.
5. Less restrictive option: Decisions should minimise restrictions on the person’s rights and freedom.

When an individual with learning disabilities is asked to consent to a treatment or service, the MCA guides professionals in how to assess and support their capacity to do so.

Equality Act 2010

The Equality Act requires reasonable adjustments to be made for individuals with disabilities, ensuring they can understand and process information needed to give consent. This includes:

• Providing information in accessible formats.
• Allowing a trusted person, such as an advocate or family member, to explain the information.
• Offering a quiet space for discussions if the individual experiences anxiety.

Care Act 2014

The Care Act emphasises person-centred care and informed consent as crucial elements of adult social care. It requires care providers to enable individuals to participate as fully as possible in decisions about their care and treatment.

Ways to Support an Individual to Give Informed Consent

Supporting individuals with learning disabilities involves practical steps tailored to their unique needs. Below are effective strategies:

Use Accessible Communication

• Provide information in formats suited to the individual’s communication style. This could include easy-read documents with pictures, videos, or verbal explanations.
• Use visual aids, such as diagrams or models, to explain medical procedures.
• Break complex information into smaller, more manageable pieces and avoid jargon.
• Speak slowly, use simple language, and give the individual plenty of time to ask questions or process information.

For example, instead of saying, “This medication is a sedative that will help you during the procedure,” you might say, “This medicine will help you feel calm while the doctor helps your body feel better.”

Encourage Questions

Individuals must feel free to ask questions to clarify anything they do not understand. You can prompt this by asking, “Would you like me to repeat anything?” or “Is there anything that isn’t clear?”

Actively involving the person in this way helps them feel included and reduces any uncertainty they might feel about their options.

Involve Advocates or Trusted Supporters

Advocates or trusted supporters, such as family members or carers, can assist individuals with learning disabilities in understanding their choices. Advocates can:

• Simplify explanations or rephrase information.
• Speak up on behalf of the individual if healthcare professionals fail to explain information clearly.
• Offer emotional reassurance during decision-making.

Advocates, however, must not influence decisions. Their role is to support the individual’s understanding and ensure they feel confident in their right to decide for themselves.

Use Decision-Making Aids

Decision-making aids can include tools like visual charts, videos, or step-by-step explanations. For example, a traffic-light system, with green for “yes,” orange for “not sure,” and red for “no,” can help individuals express their preferences.

Professionals should provide repeated opportunities for discussion using these aids, as some individuals may require time to fully grasp all aspects of a decision.

Provide Extra Time

Many individuals with learning disabilities may need additional time to process information or ask follow-up questions. Avoid rushing the process. Instead, schedule extra time for appointments or allow multiple sessions to complete the discussion about treatment.

For instance, if the individual needs to undergo surgery, healthcare providers should spread the consent discussions over several days, if necessary, to allow the individual to process the implications of their decision.

Respect the Right to Refuse

Every individual, regardless of their disability, has the right to refuse consent. If an individual chooses not to proceed with treatment, caregivers and healthcare providers must respect their decision, provided it is made with capacity. Only when it’s determined that the individual lacks capacity may professionals make decisions in their best interests, following MCA guidelines.

Assess Capacity if Required

Under the MCA, it must be presumed that a person has capacity unless there is evidence otherwise. If there is concern that the individual may lack capacity to give informed consent, a formal capacity assessment must be carried out.

This assessment looks at whether the individual can:

1. Understand the information relevant to the decision.
2. Retain that information long enough to make the decision.
3. Use or weigh up the information as part of the decision-making process.
4. Communicate the decision, whether verbally or through other means.

If the assessment finds that the person lacks capacity, decisions must be made in their best interest, considering their known wishes, needs, and preferences.

Encourage Consistent Practices

Healthcare organisations should develop consistent practices for gaining informed consent from individuals with learning disabilities. Staff must be trained to understand their legal duties, communication techniques, and the specific challenges individuals might face.

Avoid Coercion or Pressure

It is essential that the individual feels free to decide without being coerced or pressured. Supporting independence and giving unbiased information allows the individual to take control of their own healthcare decisions.

Examples of Supporting Informed Consent

1. Explaining medication: A person with learning disabilities is offered a medicine to manage anxiety. The GP provides an easy-read leaflet showing the benefits, possible side effects, and what alternative therapies are available. The GP gives the person several days to decide after discussing their concerns.
2. Surgery consultation: A hospital patient is preparing for an operation but finds the prospect overwhelming. The healthcare team arranges for the patient’s family member to attend discussions and uses diagrams to explain the procedure step by step.
3. Health check: A learning disability nurse takes a patient through a health check. They present each stage—like weighing, taking blood pressure, etc.—in simple terms and only proceed when the patient gives permission.

Final Thoughts

Supporting an individual to give informed consent is about listening, explaining, and ensuring they feel fully in control of their decision. By using accessible information, involving advocates, and respecting legal principles, individuals with learning disabilities can make informed choices about their healthcare. This promotes their dignity, autonomy, and right to participate actively in their care.