Diagnosis delay and disabled children

At Cerebra we have identified that a delay in getting a diagnosis of your child’s condition in the UK can be a problem and that these delays can impact on the well-being of the child and/or his or her family. We’d like to find out more about the experiences of families in gaining a diagnosis for their child or children and we would be grateful if you could help us by completing a short survey. The results of this survey will be used to inform our work and enable us to better support families in the future.

Who can participate?

We are looking for parents and carers of children with a neurological condition who have, or who are waiting for, a diagnosis of their child’s condition. This survey relates to diagnosis and delay in the UK only. Neurological conditions include for example: developmental disabilities; learning disabilities; genetic syndromes; Autism Spectrum Disorder; Cerebral Palsy; ADHD; and seizure disorders (this is not an exhaustive list). If you have one or more children with such disabilities we’d like to hear about your experiences.

If you require a paper copy of the survey, please email Beverley Hitchcock at beverleyh@cerebra.org.uk. (please specify if you require larger text).

How long will the survey take me to complete?

We estimate the survey will take around 2-5 minutes to complete.

Is the survey easy to complete?

Yes, all the questions are multiple choice or just require very short answers, you do not have to fill in the sections that ask for more information but if you have something to share we’d like to hear about it.

Will my information be confidential?

All data collected will remain anonymous and will be kept in a database that is only accessible to those working on the survey.

What are the possible benefits of taking part?

Your contribution to this research is invaluable. While you may not directly benefit by completing this survey we hope that the information you give us will help inform Cerebra’s work in this area and potentially help other parents and young people in future.

What do I do if I experience any problems with the survey or want to complain?

Please email Beverley Hitchcock at beverleyh@cerebra.org.uk.

Please click here to complete the survey.