25 August 2017
Over 50 patients and carers attended a conference at the Royal Free Hospital for people who use non-invasive ventilation (NIV) at home.
NIV is a treatment used for patients with a variety of breathing problems to improve their quality of life by providing breathing support without using an invasive artificial airway. Royal Free London (RFL) is one of only four centres in London providing this highly specialist service to patients.
The conference was the first of its kind in the United Kingdom and speakers joined staff and volunteers from RFL as well as the sponsors for the event, Philips Respironics and ResMed.
The conference covered a range of topics, from patients with respiratory illnesses travelling abroad to lifestyle management. There was an open questions and answers panel where patients and carers were able to ask experts, questions they’ve always wanted to know the answers to.
We also wanted to help empower patients to live life to the full and manage their condition as best as possible.
The conference was also an opportunity for people to meet and talk to other patients who are having the same treatment as them, to share stories and experiences and get top tips from each other.
Consultant respiratory physiotherapist, Stephanie Mansell said: “We identified that although there are charities for patients with specific conditions there aren’t specific support groups for patients using NIV at home.
“We really wanted to give patients and their families a chance to meet other patients undergoing the same treatment as them.
“We also wanted to help empower patients to live life to the full and manage their condition as best as possible. We all really enjoyed the day and we hope that all the patients and their families did too.”
Tara, a patient with a chest wall deformity who uses NIV said: “I found the day really helpful, especially learning from each other about how to manage the side effects.
“I really enjoyed the session on traveling and flying. It was a really wonderful day, thank you so much.”
Feedback from attendees was positive and the sleep and ventilation team plan to run the conference bi-annually, with the next conference being held in 2019.