Participation Works

The Council for Disabled Children is taking part in  new project that will help place children with neurodisabilites at the centre of evaluating NHS care.

The CHildren's oUtcomeMeasurement Study (CHUMS) has received almost a quarter of a million pounds in funding and will assess how to capture the views and experiences of children with neurodisability and their families in order to measure the outcomes of the NHS care they receive.

The CHUMS project, led by researchers from the Peninsula College of Medicine and Dentistry, has received the funding from the National Institute of Health Research (NIHR) Health Services Research programme (HSR). Co-investigators in the project are the Council for Disabled Children, researchers at the Universities of York, Leeds and Oxford, NHS paediatricians, and parents of disabled children.

This study comes at an important time for the healthcare of children with neurodisabilities as the NHS changes how it delivers care and measures outcomes. To make sure the views of children and their families are included, the CHUMS project will assess the best ways to measure the outcomes of the NHS care they receive.

To help make sure Patient Reported Outcome Measurements (PROMS) work for children with neurodisabiilities and their families, the CHUMS study will:

• Ask children and parents whether current questionnaires measure what they think is important
• Assess if existing outcomes questionnaires are accurate and reliable.
• Investigate if the outcomes that children and parents think are important match those of health professionals.

The research will also look at how disabled children and young people can report their own opinions, particularly exploring how technology can be used to support  this.

Amanda Allard, Principal Officer for Health at the Council for Disabled Children believes "capturing the views of disabled children is a critical step which has the potential to drive changes in the health service and improve disabled children and young people's health outcomes."

For the purpose of the CHUMS study neourdisability is a classification of Neurological impairments that relate to the central nervous system comprised of the brain and spinal cord, such as cerebral palsy, epilepsy and autism.

NCB provides a variety of opportunities for children and young people from all across England to have a say in different aspects of their health. See what young people thought about the NHS White Paper, NHS Constitution and their ideas for HealthWatch.

Have a look at our Health and Disability topic areas.

Mon, 30/01/2012 - 11:43