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…
CHI covered the travel costs for physiotherapist Aliona Roznerita to attend a training course organised by CF Europe in Belgrade. As a thank you she sent postcards made from paintings by some of the young patients.
CHI sent a spirometer, a baby scale and an adult scale to the day centre in Chisinau, with the help of medical charity MAD Aid. These will allow regular check-ups and prompt intervention at the first sign of problems which greatly reduce the damage caused by cystic fibrosis.
A new chair of the Moldova CF Association was appointed, taking a more active role in lobbying government and raising funds to increase the quality of Moldovan cystic fibrosis care. A new out-patients unit opened with assistance from a German charitable foundation, operated two days a week by Dr Turcu, and with strong support from the CF Association. Contact with Child Health International was reinitiated with a request for help securing medical equipment. In May 2015 CHI sent donated drugs and equipment to the new centre, transported free in one of their regular trucks by MAD (Make A Difference) Aid. These were gratefully received and distributed to patients in need. MAD Aid specialise in taking second hand medical equipment, mostly donated by NHS hospitals, to Moldovan clinics. When asked what was needed, Dr Turcu replied: “Our list of equipment required is long, but any help is welcome: Medical spacers with mask Compressor nebulizer systems PARI Nebulizers PARI spirometer (for lung function) Pulse oximeters Hydroalcoholic solution for disinfection Electric steam sterilisers for nebulizer disinfection”
CHI arranged for Dr Oxana Turcu to complete a ‘Nutrition in CF’ course in Leeds. Dr Turcu and Prof Svetlana Sciuca then spent a week observing the Cystic Fibrosis team in University Hospital Southampton, hosted by Dr Julian Legg.
CHI’s medical consultant Dr Julian Legg spoke at a national Cystic Fibrosis conference and delivered three nebulisers to the National Children’s Hospital in Chisinau, allowing children to be treated with saline or inhalable antibiotics at home.
CHI’s medical consultant Dr Julian Legg, physiotherapist Alicia Lander (Senior Physiotherapist, Poole Hospital), Tony Wolstenholme and Jim Hopwood made an exploratory visit to the National Children’s Hospital in Chisinau, at the invitation of Dr Barbova of the medical genetics unit. They team also met with the British Ambassador to understand what support was currently available for the cystic fibrosis teams working there.
Prof Manika spent time with each member of the CF Multi-Disciplinary Team – specialist nurses, physiotherapists, dietitians, pharmacists, social workers, CF psychologist, specialist Microbiologist and palliative care team. We provided her with protocols in each of these areas and particularly pharmacy protocols for IV antibiotics. In addition, Prof Manika attended adolescent transfer clinics run in the paediatric department, the purpose of which is to smoothly transfer adolescents over to the adult CF service. Prof Manika spent time with our service manager who discussed organization and delivery of CF services, which included management of a Multi-Disciplinary Team, infrastructure and logistics around maintaining an efficient, well-resourced service.” “My training on CF care in Adult Cystic Fibrosis Service in Southampton England has been a multidimensional experience which I hope will change my every-day work in Greece. I would like to thank all the members of the multidisciplinary team for their time and for sharing their knowledge and experience with me. I am also grateful to the Child Health International and in particular Mr. Jim Hopwood, chairman of the board of trustees of CHI for making this training possible. I would especially like to thank Dr Mary Carroll for coordinating this complex training, for introducing me to a different and wider way of thinking on CF care, and for always making me feel welcome.”
September 2016, a physiotherapist from Thessaloniki where there are 50 CF adult patients, spent a week with the team in Southampton, funded by CHI.
In summer 2016, two physios from Athens attended training in Belgrade organised by CF Europe.