Mencap produces resource to ensure family carers are involved in important decision-making

Learning disability charity, Mencap, has produced a practical resource to ensure parents and carers of people with profound and multiple learning disabilities are involved in all important decisions with their health.

The Mental Capacity Act 2005 requires all health professionals to consult with family members when an adult lacks the mental capacity to make the relevant decision themselves.

However, in its latest report into the deaths of people with a learning disability in NHS care, 'Death by indifference: 74 deaths and counting', Mencap found family carers are not always involved and listened to when decisions are made by healthcare professionals and this can have tragic consequences.

“We know from our campaigning work that family carers are often excluded from decision-making, and this is particularly significant when it comes to decisions about health and medical treatment,” said Bella Travis, Mencap’s information and policy officer for PMLD.

“Families often have invaluable knowledge about their loved one, such as how they express that they are in pain, but health professionals are failing to meet their legal duty to consult them.

“Mencap has developed this resource because it is very important that families know their rights and feel able to challenge when they are not being involved,” she added.

The new resource, which is aimed primarily at families of a person with profound and multiple learning disabilities (PMLD), informs parents of their rights and gives practical suggestions on how to ensure that they and their family member are involved in decisions.

It includes film clips of families telling their own stories of their experiences of healthcare. It also outlines useful tools that families can use, such as hospital passports and health action plans.

The resource has been funded by the Social Care Institute for Excellence with families providing guidance through an advisory group.

To download the resource, go to www.mencap.org.uk/node/14764