Not even the gale force winds could keep our dedicated research nurses from performing a home visit to a child with Muscular Dystrophy on a Clinical Trial in the Isle of Man.
ResearchNurse.co is involved in a study which involves a new innovative treatment for young boys with a life threatening muscle wasting disease.
Initially, the families and these boys were travelling to various hospitals in the UK involved in the trial. This is where ResearchNurses.co became involved. Our aim is to visit the boys in their own homes to give the trial drug and take blood from these boys (and the paperwork of course!) , thus preventing a major disruption to the family’s life. It enables the rest of the family to have a ‘normal’ daily routine and more importantly for the boys not to miss too much of their schooling. This though, is from the parents’ point of view, in our experience the boys are quite happy to miss a day at school each week!
One of our first visits in this study was to one of the boys on the Isle of Man and started out as a normal days work. The visit went really well and the boy was so happy to see us and even set up a character of us on his Wii, so that we could have a game with him! Mum was really happy with the service and welcomed us into their house. On completion of the visit we set off to our very happy awaiting taxi, (a great fare!) to the airport where things started to go awry! The winds were gale force and the waves were 70 feet high. It was difficult to stand or walk. As we sat in the airport it was slowly becoming obvious that there were issues with the flights. One by one announcements were made for flight cancellations. We sat with fingers crossed as the screen for our flight changed from check in open, wait in lounge to go to gate and then the dreaded announcement to tell us the flight was cancelled. Great, we had no provisions with us, no toothbrush, hairbrush or make up! Tragedy!! We spent the next few hours in a queue to re arrange flights and book a hotel for the night. Finally we sat down to a very, very welcome bottle of wine and reflect on the day’s adventure.
On reflection, we should be more prepared for the next visit in January!
By Jan Sleigh and Heather Glover
Senior Research Nurses at ResearchNurses.co