Parents and carers in contact with Rainbows Hospice Loughborough and Together for Short Lives told us about the difficulties they experienced when their child, who lacks mental capacity for some or all decisions, became age 16 and required support from health services or social care.

This is because at the age of 16 there is a change in the legal framework from the way decisions are dealt with for small children (almost always entirely in the hands of those with parental responsibility) to the framework for adults set out in the Mental Capacity Act 2005, which applies to anyone over 16. The law also recognises a period of transition in which a child may become more able to make decisions for themselves. But in cases where a child will not have capacity as an adult, the change in the legal framework at age 16 can feel arbitrary and abrupt and can cause problems, especially if it comes as a surprise.

Parents and carers supporting this website wanted others to know that it is best not to wait until you child turns 16 before you begin to consider how the Mental Capacity Act 2005 affects you and your child when health and social care is required.