This is a report of the visit to Minsk 24th to 28th September 2007, a major part of the CHI Belarus Cystic Fibrosis Project.
This visit took place as a result of collaboration betweenSolvay Pharmaceuticals GmbH (now Abbot) (represented by Dr. Ulrike Tanneberger) and Child Health International. Solvay sponsored the project at an estimated cost of 5000 Euros.
The aim of the project was to exchange experience between medical professionals in Belarus and UK in diagnosing and caring for children with cystic fibrosis (CF). It was envisaged that the CF paediatric service in Belarus might enjoy some benefits, thereby improving the life expectancy and quality of life of those with CF.
The programme in Minsk was drawn up with the help of the Solvay Pharmaceuticals Representative Office in Minsk together with CHI.. Its key parts were to establish relations with those involved in CF care in Belarus: principally Dr Vladimir Bobrovnichij, relevant officials of the Belarus Ministry of Health, and representatives of the (CF) Parents’ Association; and to hold a Conference on 26th September.
The UK team consisted of:
- Dr Mark Rosenthal Consultant in Paediatric Respiratory Medicine
- Nicola Collins CF Physiotherapist
- Rivanna Stuhler CF Dietician
- Tony Wolstenholme CHI Project Manager
Sadly, Angela Clarke specialist CF nurse had to withdraw from the team on the eve of departure owing to ill health.
Care of children with CF as in-patients is undertaken at Children’s Hospital No 3 in Minsk. The leading specialist is Dr Vladimir Bobrovnichij. His principal job is as a Lecturer at the Belarus State Medical University. Until 2006, he had responsibility for CF cases in Minsk only, but his responsibilities were then extended to be Republic-wide. He has good plans to provide wider coverage; these deserve support.
- The number of known cases of CF in Belarus is about 150. For a population of 10 million, this suggests many instances of CF are notdiagnosed – maybe as many as 1000. Of the 3 patients seen, 2 were diagnosed only by ages 5 and 15 years. Dr Bobrovnichij has 28 patients at his clinic and he offers consultations to anyone referred to him. Awareness of CF in the Belarus medical fraternity, and in the wider population, is judged capable of improvement.
- Of the 150 known cases of CF, 21 are over the age of 18.
- There has been some good collaboration between CF medical personnel and the Parents’ Association and a CF Centre in Verona, Italy since 1996.
- There is a Parents’ Support Group, whose Chairman is Natalia Dobrova, with 80 members but it needs to expand to cover the whole of Belarus, not just Minsk. It appears to lack some resources to be really effective in supporting CF families.
- Sweat testing is the optimal way to diagnose CF. Confusion seems to exist on the level of Cl ion, at which a diagnosis of CF should be assumed. Testing is unreliable owing to the lack of Macroduct equipment.
- Physiotherapy techniques were found to be only partially effective; with satisfactory percussion but an absence of breathing exercises. Thus the Active Control Breathing Technique, ACBT, created much interest.
- We only encountered two doctors who were competent to teach and practise physiotherapy for CF – both had learnt their skills in Verona. No specialist physiotherapists appear to exist.
- Whilst the importance of nutrition to children with CF is recognised, there are no trained dieticians working in the CF field in Belarus.
- Creon has been provided by the State since 1997. As a result chiefly of meeting adult patients, a significant increase in doseage of Creon was recommended. It appears to be under-prescribed.
- Much CF information, produced by the UK CF Trust, was handed out. Gifts of an oximeter and lung function machine were made to Dr Bobrovnichij.
- The UK team strongly advocated a “team” approach to the care of children with CF. The team should include: consultant doctor, physiotherapist, specialist nurse, psychologist and dietician. This was enthusiastically accepted by Belarusian colleagues.
- The services of interpreters with medical training were invaluable.
At a meeting at Solvay Pharmaceuticals’ Minsk office, the results of the project were evaluated. Much goodwill had been generated during the week and all involved, including officials at the Belarus Ministry of Health, wished to have continuing collaboration. It was agreed:
- Exchanges should continue by all means possible; a probable channel of communication would be e-mail.
- Consideration should be given to a visit to Royal Brompton Hospital for a small team from Minsk, including Dr Bobrovnichij and Dr Papij. This would allow them to see how CF care operates in Britain, and Dr Papij to develop her physiotherapy techniques.
- As Dr Bobrovnichij’s plans for CF care Republic-wide evolve, and at a time judged suitable by him, the UK team could return to Belarus and undertake a number of joint clinics with him and his team over a period of a week. Clinics might be held in selected centres such as Minsk, Gomel, Brest, Hrodna and Vitsebsk together with small seminars.
5th October 2007 Tony Wolstenholme, CHI project manager