Learning disability charity Mencap has produced a resource for parents and carers of people with profound and multiple learning disabilities (PMLD) to help ensure they are involved in making best-interest decisions about health matters (24th July 2012).

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.

But as Mencap found in its latest report into the deaths of people with a learning disability in NHS care, 74 Deaths and Counting, family carers are not always involved and listened to when decisions are made by healthcare professionals, sometimes with tragic consequences.

The new resource equips parents to know their rights and gives practical suggestions of how they can 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.

Beverley Dawkins OBE, policy manager for profound and multiple learning disabilities at Mencap, said: “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. 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.

The resource can be downloaded here