Child Health International was invited to join a 20th anniversary celebration of the start of the Southampton- Moscow project. Mrs Rosie Barnes, CHI’s patron and former CEO of the UK’s Cystic Fibrosis Trust, attended the event, presenting her experience from the CF Trust. Recognising the lack of coordination between groups currently involved in Russian cystic fibrosis care, and the fragmented interface these groups presented to the Russian Ministry of Health, it was recommended that the Russian Federation consider forming a unified body for cystic fibrosis . This would ideally represent Doctors, associated medical professionals, scientists, geneticists, patients and their families.
Rosie Barnes made the same presentation at a conference organised by Ostrova in St Petersburg and in Moscow at the National CF Congress. Language barriers were successfully overcome by presenting Russian slides whilst speaking in English.
Click here to view full presentation in English {Note – link to be added – apologies for inconvenience}
Click here to view full presentation in Russian {Note – link to be added- apologies for inconvenience}
Further Recommendations:
- CF care funding structure: In the UK, the Government, through the NHS, funds the cystic fibrois service, medical staff and medicines. The CF Trust also raises money through donations to help families and support research. This latter supplementary funding function in Russia is undertaken by Ostrova, but due to cultural differences, is more reliant on a single philanthropist. It is recommended that an insight into the role of the CF Trust in the UK would be useful for those managing Ostrova and PSGs. It was also recommended that a small group of those involved in the support of CF families in Russia be invited to come to UK for 3-4 days to study the role of the UK’s CF Trust and learn more about charitable giving/ fundraising, however this recommendation was not achieved.
- Site visit to Royal Brompton adult CF department: It was agreed that the new Head of Russian CF, Professor Elena Kondratyeva, would come to London and spend a week with the Adult CF department at RBH from 16-23 November to lead to a review of future collaboration.
CF care funding. In Britain, the Government, through the NHS, funds the CF service – medical staff and medicines – but the CF Trust raises much money, given voluntarily by donors, both to help families and support research. This latter supplementary funding function in Russia is undertaken by Ostrova – but is more reliant on a single philanthropist’s generosity. Different countries ………. different cultures, but it is concluded that an insight into the role of the CF Trust in Britain would be useful for some of those managing Ostrova and PSGs.