Yaroslavl Online Conference

Russians use the term kinesitherapy, meaning physiotherapy plus exercise. This report by CHI Project Manager, Russia, Tony Wolstenholme covers the contribution by UK based CF physiotherapists, Tracey Daniels and Elizabeth Shepherd and how we prepared for the conference, ever mindful of what our Russian partners wanted from us. Whilst the Russian CF service recognises the importance of kinesitherapy, there is a severe shortage of practitioners. Arguably, in terms of collaboration with CHI, providing guidance and masterclasses is the top Russian priority. There was a tentative plan to organise masterclasses in St Petersburg in April 2020 and, when this had to be postponed owing to Covid 19, there was a plan to organise them around the 30th anniversary of the Russian CF service in late June with masterclasses in Moscow and Kazan. It was not to be. It became increasingly clear that we should consider delivering masterclasses virtually – and the opportunity was, in the end, realised at this Yaroslavl Forum. Elizabeth Shepherd, physiotherapist at UHS and Tracey Daniels, physiotherapist at York Teaching Hospital were our two experienced “trainers/ educators”. They deserve our wholehearted thanks for undertaking this responsibility with the extra burdens of Covid 19 never far away. We decided to pursue the virtual route early in July. Russian kinesitherapy requirement. We were asked to deliver a 45 minute lecture and a 45 minute workshop, during which kinesitherapy techniques would be demonstrated by video, preferably on young children, rather than adults. One task was to refine the purpose of the…

First Russian CF Forum

A first Russian CF Forum, deliberately bringing together medical CF personnel and CF social welfare organisations at Yaroslavl, NE of Moscow on the Volga. CHI was represented by Dr Mary Carroll, Adult CF Consultant, Judi Maddison, paediatric CF Nurse Specialist, accompanied by Jim Hopwood, CHI Chairman. A good number of parents was present. Topics covered by the CHI team included transition from child to adult care, palliative care and clinical trials. As a result of these events, the following matters formed an agenda for ongoing collaboration: To deal with a critical shortage of CF kinesitherapists, Russian Federation-wide, CHI to run some 2 day physiotherapy master classes in Moscow, St Petersburg, Kazan, Samara and to arrange these either in conjunction with a national Russian CF conference or with kinesitherapy courses organised by Ostrova in St Petersburg annually in April and September. A handful of individual requests for training at RBH, all of which will require each person to complete the RBH online course and to have a certain degree of competence in the English language. Request for help on how to treat difficult cases – for example consultant to consultant via Skype, Zoom etc.  

UK CF team visit Moscow

A “Russian School of Cystic Fibrosis” was organised mostly by Dr Siobhan Carr, RBH and Professor Elena Kondratyeva in Moscow, February 2016. The team was Dr Siobhan Carr, paediatric CF respiratory consultant, Dr Su Madge, consultant nurse, adult CF care (now i/c Adult CF care RBH), Suzie Nolan, paediatric CF dietician and Fiona Cartwright, adult CF physiotherapist. Apart from local Moscow personnel, there were CF medical personnel from  St Petersburg, Crimea, Stavropol, Izhevsk, Nizhny Novgorod, Rostov on Don, Arkhangelsk and Smolensk. The Russian side chose the topics, which ranged from Transition from child to adult CF care, newborn screening, lung transplantation, CF nutrition, airway clearance techniques to fertility and pregnancy issues and CF related diabetes. Proceedings were filmed and used later in Tomsk at a training event for Siberian CF centres.

Online CF course

RBH designed an online distant learning CF course and also a one week on site course. The online course was designed for all CF medical professionals including doctors, physios, dieticians, nurse specialists and pharmacists. Anyone who passed the course became eligible for an onsite internship of about 2 weeks’ duration. At the 2014 July meeting between Royal Brompton Hospital and Child Health International it was proposed that the online course should be translated into Russian. Ostrova took on the role of promoting the course by publicity and additionally Ostrova paid the course fee of £350 to anyone that passed the course. Uptake was generally poor, the reason for which has been difficult to acertain. The online course has since been updated and the revised course yet to be translated. Child Health International is currently considering how to improve this service and create a resource that will be more widely utilised.

Visit to Royal Brompton Hospital

Professor Elena Kondratyeva returned to Royal Brompton Hospital (RBH) for one week in late November 2014 with Dr Siobhan Carr and the CF paediatric department. During her time at RBH, a follow-up meeting to the July 2014 meeting took place. Significantly, the Russian CF service in Moscow had been reviewed by Professor Tiddens of the Erasmus University Medical Centre in Rotterdam. He made a series of recommendations and pledged the support of EUMC in implementing them. His recommendations included: Uniform cross-infection prevention. Better collaboration between the CF team and other hospital specialists. Rationalise / improve physiotherapy provision. More nutritional advice. Encouraging the various parents’ associations to merge. (comment: to form a body more like the UK’s CF Trust) Developing a research capability with a view to joining the ECFS Clinical Trials Network and accessing research funding. Developing an Electronic Patient Dossier. As of 2021, we are unaware of the progress of the Tiddens recommendations.

Russian CF team visit RBH

In July 2014 Professor Kondratyeva and Ostrova attended a meeting at RBH to discuss further collaboration and opportunities to utilise existing UK-Russian relationships. Key discussion points are summarised below: It was proposed that a group of senior Doctors and health service managers/ Ministry of Health officials could be invited to the UK to gain a greater understanding of the UK CF service (following the example of the Ukrainian visit in 2002 [enter link]). However, after further discussion it was felt the timing for such a visit was not right, and that priority should be given to addressing the current lack of practising CF physiotherapists (kinesitherapists) and dieticians. The Russian team enquired about short-term internships of 1-2 weeks’ duration at RBH. Little progress followed and it is an issue not resolved – and post Covid – even in 2021. See below – re online courses at RBH. The possibility of presenting a “Multidisciplinary Team (MDT) CF case of the month” via videoconferencing to help in the education of other CF MDTs was discussed. Whilst the intention was that the RBH would do this primarily for UK-based learning, the potential for this to be opened up to Russian cases was also explored. No decisions were made, however, this remains a valid proposition if simultaneous interpretation could be provided.

Head of Russian CF service visits UK

Professor Elena Kondratyeva (Head of Russian CF service) came to Royal Brompton Hospital for one week, principally in the adult CF department with Dr Di Bilton. The visit was facilitated by project manager, Tony Wolstenholme, who also acted as interpreter as required. This was a very intensive week – and it was agreed before Elena went home that she would come back for a further week in the paediatric CF department in July 2014. Elena’s choice of the UK and the Royal Brompton Hospital (RBH) to deepen her knowledge of cystic fibrosis was significant and a reflection of RBH’s standing in the CF world.

CHI patron presents at Russian conferences

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…

Intial project complete

Child Health Internationals intitial three year project partnering Russian medical teams with the Southampton cystic fibrosis centre draws to a close. However, key relationships formed during this time will ensure that collaboration and communication continues, both with Child Health International, and directly between medical specialists. At the end of the project, life expectancy of a CF patient in Moscow had doubled to 22 years and the benefits of treating a sick child with a multidisciplinary team was acknowledged.

Collaboration between Moscow and Southampton

Dr Chris Rolles, now President, CHI, after visiting the Republican Children’s Hospital, Moscow in early 1993,  decided that there was much he could do to improve the treatment regime in Moscow. A 3 year collaborative project was set up between the Moscow CF service and Southampton, 1993-96. A child born with cystic fibrosis in the UK had a life expectancy of 25; in Moscow, 11. The UK emphasised sustaining children’s good health through out-patient monitoring, whereas funding for care in Russia depended on CF hospitalisations, disincentivising prevention. Doctors were dominant, and CF families ineffectual in advocating for better standards of care. Care in the UK averaged $15k/year (including e.g. lung transplants); this project set a target of $1k/year for Moscow, prioritising early diagnosis (through neonatal screening) and prevention (no passive smoking, regular out-patient clinics, meticulous health records, tailored dietary advice and specialised physiotherapy) by which it is possible to achieve 80-90% ‘wellbeing’ for <10% of UK costs. At that time, there was no Zoom, Skype and it was early days for emails. The collaboration relied on regular face to face contact and so there was much travel between Moscow and Southampton. “Comradeship” (to use a Soviet term!) grew warmly between the two teams – Dr Chris Rolles, Judi Maddison (Nurse specialist) and the Moscow team led by Professors Nikolai Kapranov and Natasha Kashirskaya, which flourished for over 25 years. Friendship flourished in part because it became the norm to stay in each others’ houses/ flats. Professor Kapranov sadly died on…