Our UK based families are invited to complete a short, anonymised online survey to help improve standards of care for long-term ventilated children and young adult patients under the age of 25 years. The online survey, which can even be completed from your smartphone, asks some easy questions about your long-term-ventilation care and takes about 20 minutes to complete. For example, it asks you how you rate the current respiratory care you or your child currently gets, and how you believe things can be improved, if at all?

Please feel free to start the survey by clicking the link below, whenever you have about 20 minutes to spare:


NCEPOD, the people who developed the survey, are an independent national confidential enquiry organisation that looks at patient outcomes. This survey has  been commissioned by NHS England and UK governments and departments of health to assist in maintaining and improving health treatments in the UK as a part of a wider study which has been developed to explore the quality of care received by children and young people on long-term ventilation (LTV) aged 0-24 years. As well as the anonymised survey, they have also invited our families to join a larger 90 minute online patient study which can be accessed from home from your computer or smartphone.

At the end of the survey, in December 2019, they will produce a report for doctors, nurses and other professionals about how to improve the care they deliver and guidance for patients and families on what care you should expect to receive.

Thank you for your help!