A research team including Prof Mary O’Brien from Edge Hill University, Prof David Oliver from the University of Kent and Prof Chris McDermott from the University of Sheffield are inviting people with MND to take part in a study looking at the way the diagnosis is told to people, the information they are given and if the process is in line with the Guidance produced by the National Institute for Health and Care Excellence (NICE). They are also looking for family members/caregivers of people diagnosed with MND to understand more about how the process is seen by them. It is hoped that the results will be published in scientific papers to enable neurologists, and others involved in health and social care, to be aware of the issues that are raised so that there can be improvements to care. The study has been reviewed and given ethical approval from Edge Hill University Faculty of Health & Social Care Research Ethics Committee.
You will be asked to complete a questionnaire asking about your (or your family member’s) experience of being told the diagnosis of MND. The questionnaire is web-based and can be accessed via the links below. If you would prefer a paper copy of the questionnaire, or for any other queries, please contact Prof Mary O’Brien, firstname.lastname@example.org (01695 650918).
Survey for people with MND: https://www.surveymonkey.co.uk/r/people-with-mnd-survey
Survey for family members/carers: https://www.surveymonkey.co.uk/r/family-carers-survey