We are looking for parents of disabled children who want to take
part in an exciting research study to help develop a Patient
Reported Outcome Measure (PROM) for disabled children.
As part of an important new health study the Council for
Disabled Children would like to speak to parents of children and
young people with neurodisabilites about their health, what health
outcomes are important to them and how the NHS can measure
Study (CHUMS) is being lead
by the Peninsula Cerebra Research Unit for Childhood Disability
Research, with research support from the Universities of York,
Leeds and Oxford and NHS paediatricians. The study comes at an
important time for the healthcare of children with
neurodisabilities as the NHS changes how it delivers care and
measures outcomes. The CHUMS project will shape this process by
influencing how the NHS sets health outcomes for children with
neurodisabilites and how it works with children and their families
to measure them.
For this study the definition of neurodisability being used
is a disability that affects the brain and nervous system. This
may, for example, result in predominantly physical difficulties
(such as cerebral palsy), learning and communication difficulties
(such as autism), or other medical conditions (such as the problems
associated with epilepsy). Sometimes it is difficult to label a
child's condition with a specific diagnosis, however for the
purposes of this project we are broadly inclusive.
The voice of children and young people with neurodisabilities
and their families is central to the CHUMS project and CDC wants to
listen to what they think about their health. This will help us
make sure PROMS work for children with neurodisabilities and their
This is a vitally important opportunity for parents to have
their say about health care.
If you work with parents or are part of a parent forum and know
parents who would be interested in taking part in this study we
would like to hear from you. We are looking to run 6 (one
off) focus groups across the country with up to 12 participants in
each focus group.
If you are interested please contact Amanda Allard at firstname.lastname@example.org or on 020 7833 6843.