Child Health International contributes four speakers at the Yaroslavl Conference 2021.
On 12/13 November 2021, Child Health International was invited to participate in the Third Annual Yaroslavl International Forum arranged by the ‘All-Russian Association for Cystic Fibrosis Patients’. The Forum was entitled “Let’s Unite our efforts in the battle against cystic fibrosis” and was dedicated to the memory of Professor Nikolai Kapranov. Professor Kapranov had been the Head of Russian CF healthcare for almost 30 years; he and his wife both died in March 2021 after becoming Covid-19 infected. Our participation was significant in so much as Child Health International provided four out of eleven overseas speakers.
CHI has supported this Forum since its inauguration in 2019. It was established to bring together doctors, geneticists and scientists on the one hand with CF patients and parents/ carers, who are represented in many, rather disparate charities. After the first Forum, attended in person, our Russian partners asked CHI to help with the development of CF physiotherapy by giving a series of masterclasses in such cities as Moscow, St Petersburg, Samara and Kazan. Because a typical CF patient needs physiotherapy up to 3 times a day to clear mucus from the lungs, it is vital not only to have a cadre of professional CF physiotherapists but parents too need the skills to give physio in the home. When the pandemic struck in March 2020, sending UK physios to Russia became impossible – the new era of Zoom, Teams, YouTube dawned …. And, at the 2020 Forum, two experienced CF physios, Tracey Daniels and Elizabeth Shepherd, gave their virtual presentations. Instead of flights, hotel expenses and visa fees, there was no expenditure by CHI. Even so, transferring this kind of expertise online is arguably inferior to actual physical contact and with a real patient.
This third Forum, attended virtually by 208 doctors and 383 parents and patients from all over the vast Russian Federation, covered everything from genetics, targeted therapy, regional issues (many regional CF centres have less than 100 patients), palliative care and funding issues through to physiotherapy, home care and the work of foundations and patient organisations.
The speakers from Child Health International were David Wilford, Chairman, who gave a presentation entitled ‘Collaboration both Internationally and at home. An essential approach to obtain the very best outcome for CF patients’ while Dr Mary Carroll spoke on ‘Palliative Care and Lung transplantation over 30 years at the Adult CF centre in Southampton UK’. In addition, Tracey Daniels gave two presentations, ‘Growing up with CF: adapting physiotherapy through adolescence’ and ‘Sports or physiotherapy? An alternative or a necessary supplement?’ while Judi Maddison gave a presentation entitled ‘Home hospitalization unit – allocation of responsibilities (patient, relatives, doctors)’.
All the presentations were well received and Child Health International has already been invited to attend the fourth Annual Yaroslavl Forum in November 2022.
Tony Wolstenholme, Project Manager, Russia