Do you have approximately 90 minutes to spare to help with an important study that will aim to improve care for long-term ventilated children and young people in the UK?  If yes, perhaps you can help the The National Children’s Bureau by joining them in an online focus group interview, which will take place as a Webinar in February or March this year, at a time that is convenient for you.  Download the NCB flyer here (PDF)

The information from the focus groups will help improve the understanding of long term ventilation (LTV) care for children and young people. It will also feed into concrete recommendations on what good care pathways look like.

To take part, you will need to:

  • Be a parent of a child or a young adult under the age of 25
  • Use BIPAP, CPAP or Tracheostomy for some hours of the day or night (long-term ventilation)
  • Have access to a computer
  • Have 90 minutes to spare, at a time that is convenient for you in February or March 2019

The National Children’s Bureau (NCB) focus groups are as a part of an NCEPOD study on children and young people who are on long term ventilation (LTV) ( They want to hear your views and experiences as the parent or carer of an LTV child, and how LTV can affect family life, employment and income. We’re also interested in your experiences of care services, and the level of support you get from different agencies.

You can participate from your home using an online platform called GoTo Webinar, which the NCB will help you access. The focus group will take place in late February or early March at a time that is convenient for you, and will last around 1.5 hours.

If you are interested in taking part, or if you have any other questions relating to the focus group or study, please contact Senior Researcher Jon Eilenberg ( or Senior Participation Development Officer Jo Carr (