CHI
Child Health International
Helping children with Cystic Fibrosis live
life
Belarus
Background
Nicola Collins gives
physiotherapy demonstration and leads discussion.
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 between Solvay Pharmaceuticals GmbH
(represented by Dr. Ulrike Tanneberger) and Child Health International.
Solvay sponsored the project at an estimated cost of 5000 Euros.
Aim
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.
Programme
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.
UK team
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.
Observations
A
slide from Dr Rosenthal's presentation - and Dr
Elena Nevero, Chief Paediatrician, Belarus Ministry of
Health.
Rivanna
Stuhler, on bed, discusses dietary needs with two patients
- 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
not diagnosed – 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.
Recommendations.
Dr
Vladimir Bobrovnichij making his presentation.
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
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