Families of disabled young people urged to challenge health professionals
Janaki Mahadevan
Wednesday, July 25, 2012
Carers who look after profoundly disabled young family members are being advised on how to challenge health professionals who fail to listen to their views.
Under the Mental Capacity Act 2005, all health professionals are expected to consult with family members when a young person with profound and multiple learning disabilities does not have the capacity to make medical decisions for themselves.
But a Mencap report in February into deaths of people with learning disabilities found that healthcare professionals often fail to consult or listen to the views of family carers.
In a bid to tackle this, Mencap has produced a guide to the act to help carers have a greater say over the care provided to their family members.
Funded by the Social Care Institute for Excellence, the guide includes sections to help family carers understand both their rights and responsibilities towards children and young people in their care.
Beverley Dawkins, policy manager 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.”
The resource gives practical suggestions of how carers can make sure that they and their family members are involved in decisions, such as drawing up health action plans to share with professionals.
In the guide, parent carers are also urged to prepare to allow their children to make more decisions for themselves before they reach the age of 16 where possible, to allow for a healthier transition into adulthood. The resource includes film clips of families talking about their experiences of healthcare.
Young people with profound and multiple learning disabilities are defined as having more than one disability; having a profound learning disability; having great difficulty communicating; needing high levels of support; having complex health needs or mental health difficulties.
