Russia - Child Health International

There are currently 3200 registered cases of cystic fibrosis in Russia, compared to approximately 10,600 in the UK. This translates to a density of 1 case per 23 km²in the UK compared to almost 1 in 5000 km²in Russia. This geographic sparsity creates significant challenges to the adequate provision of multidisciplinary care, especially in more rural regions.

There are currently only 40 regional CF centres outwith Moscow and St Petersburg, covering an area of almost 70 times the size of the UK.

Whilst cystic fibrosis care in Moscow and St Petersburg is generally of a good standard, the geographic sparsity of specialist centres creates significant challenges to the adequate provision of multidisciplinary care across rural regions.

Life expectancy for a child born with cysitic fibrosis in Russia doubled during the first three years of Child Health International’s involvement

Key issues identified include the following:

A lack of diagnostic skills at the primary care level in rural regions (compensated to a degree by the advent of neonatal screening).
A significant lack of specialist physiotherapists.
A limited number of specialist dieticians and psychologists.
At the adult level, additional training is required for doctors, specialising in endocrinology, gynaecology and psychology.

Child Health International’s work in Russia

Child Health International have been working in Russia since 1993 when Dr Chris Rolles started a 3-year collaborative project between Moscow cystic fibrosis centre and Southampton. Close working relationships formed during this intial 3-year period have enabled ongoing communication between UK and Russian teams, with activities including conference attendence, specialist training and work shadowing and ad hoc information sharing.

Download our full project summary by clicking on the link below.

Project Summary

Find out more about the structure of Russian cystic fibrosis organisations below.

Organisational Structure

2020

Yaroslavl Online Conference

Judi Maddison, Nurse Specialist from University Hospital Southampton, presented information covering palliative care, the legal aspects of administering IV antibiotics at home, and care of a CF patient in the community, following a request to Child Health International.

2019

First Russian CF Forum

Medical CF personnel and CF social welfare organisations gather at Yaroslavl, NE of Moscow, with CHI represented by Dr Mary Carroll (Adult CF Consultant) Judi Maddison (Paediatric CF Nurse Specialist), and Jim Hopwood (CHI Chairman).

2016

UK CF team visit Moscow

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 visit Moscow

2015

Online CF course

Royal Brompton Hospital designed an online distant learning CF course, translated to Russian for greater accessibility.

2014

Visit to Royal Brompton Hospital

Professor Elena Kondratyeva returned to Royal Brompton Hospital for one week in late November 2014 with Dr Siobhan Carr and the CF paediatric department.

2014

Russian CF team visit RBH

Professor Kondratyeva and Ostrova attended a meeting at RBH to discuss further collaboration

2013

Head of Russian CF service visits UK

Professor Elena Kondratyeva (Head of Russian CF service) came to RBH for one week, principally in the adult CF department with Dr Di Bilton.

2013

CHI patron presents at Russian conferences

Child Health International invited to join 20^th anniversary celebration of the start of the Southampton- Moscow project

1996

Intial project complete

Life expectancy over the course of the project increased from 11 to 22 years with a growing recognition of the need for multidisciplinary care.

1993

Collaboration between Moscow and Southampton

Child Health International starts a three year collaborative project between Moscow and Southampton cystic fibrosis centres.