Consent, capacity and best interests

For sharing beyond direct care, consent matters, and consent only works when the person can actually give it. That brings in the Mental Capacity Act 2005, which governs decision-making for people in England and Wales who may lack capacity.

The starting point: assume capacity

Every adult is assumed to have capacity to make their own decisions unless there is evidence otherwise. A diagnosis of dementia or a learning disability does not by itself mean a person cannot decide who sees their information. Capacity is decision-specific and time-specific: someone may be able to decide about sharing a photo but not about a complex financial matter, and their capacity may fluctuate.

You must also take all practicable steps to help someone decide for themselves before concluding they cannot: plain language, easy-read materials, pictures, a familiar supporter, a better time of day. An unwise decision is not the same as an incapable one. A person with capacity is entitled to refuse sharing you think would help them.

When someone lacks capacity

If, after support, a person cannot make a specific decision about their information, decisions are made in their best interests. That means:

• Considering their past and present wishes, feelings, beliefs and values, including anything they said or wrote when they had capacity.
• Consulting people who know them well, such as family, carers, or an attorney or deputy if one has legal authority over the decision.
• Choosing the option that is genuinely best for the person, which is not automatically what the family prefers or what is easiest for the service.

A best-interests decision to share, or not to share, should be recorded: what was decided, why, and who was involved.

Children and young people

In brief: young people aged 16 and over are generally presumed able to consent for themselves, and younger children can be if they have sufficient understanding, often called Gillick competence. Parental responsibility matters for younger children, but the child's welfare always comes first. If your role involves children's information, follow your organisation's specific guidance.