Russia 2016

Russia Projects as at March 2016

Background

CHI’s first Russia project, led by Chris Rolles transformed CF care in Moscow and defined the approach that CHI has taken in all its later work. Twenty years on it is fondly remembered by those involved and their successors.

In May 2013, Rosie Barnes, CHI Patron and ex-CEO of the CF Trust, and Tony Wolstenholme, ex-CHI Chair and Project Manager, attended a conference in St Petersburg organised by Russian charity ‘Ostrova’ and the National CF Congress in Moscow. During these visits they discovered that Prof Elena Kondratyeva, about to take over as head of CF in Moscow, planned to come to London for English lessons. Rosie Barnes arranged an invitation for her to spend a week with the adult CF team at the Royal Brompton Hospital. This visit in November was a great success and resulted in a number of proposals for further collaboration.

In July 2014 a long delayed meeting was held at RBH to discuss these proposals, coincidentally during a second visit by Prof Kondratyeva for English lessons. As Tony Wolstenholme had expressed a wish to withdraw from CHI activities, Jim Hopwood attended for CHI.

In November 2014 Prof Kondratyeva spent a week with the paediatric CF team at RBH hosted by Dr Siobhan Carr.  At a further planning meeting attended by Jim it was agreed that Dr Carr would speak at the Moscow conference and develop plans for a longer training visit.

Recent Developments

Dr Carr did attend the Moscow conference in April, at no cost to CHI, and agreed in principal to return to run a ‘master class’ with a multi-disciplinary team in October or November.

Prof Kondratyeva has taken over from Prof Kapranov as head of the Moscow centre. Kapranov is now head of the “All-Russian Association for patients with CF”.

Meanwhile, Ostrova again held its own conference in St Petersburg and invited Helen White, leader of the Leeds Nutrition in CF course. Ostrova paid all travel and accommodation expenses but were not allowed to pay for her Russian visa, which was covered by CHI.

Russian School of Cystic Fibrosis –February 2016

The RBH team consisted of:

  • Dr Siobhán Carr, Paediatric Respiratory Consultant
  • Dr Susan Madge, Consultant Nurse, Adult Cystic Fibrosis Service
  • Suzie Nolan, Specialist Paediatric Dietitian, Paediatric Respiratory Medicine
  • Fiona Cathcart, Specialist Physiotherapist, Adult Cystic Fibrosis Service

Whilst two currently work with children and two with adults, all have experience of both.

The school was organised and hosted by Prof. Elena Kondratieva with strong support from Prof. Nataliya Kashirskaya, now living in the Netherlands but continuing to work for the Dept. of Genetic Epidemiology (Cystic Fibrosis group), Research Centre for Medical Genetics and was held in the Polyclinic of the Central Clinical Hospital RAMS, where the centre is now based, after two recent moves.
Attendees came from three CF centres in Moscow and from hospitals in St Petersburg, the Crimea, Stavropol, Yaroslavl, Izhevsk, Nizhny Novgorod, Rostov-on-Don, Arkhangelsk and Smolensk – 30 people in total.

 

Programme

Day 1

9.00 – 9.15                   Opening of School: Words of Welcome

9.15 – 10. 00                ‘Newborn screening’ The UK Pathway & the Royal Brompton Experience  SC & SN

10.00 – 10.30               ‘Clinical presentation and diagnosis’                         SM

10.30 – 11.00              Meconium ileus case discussion                                 SN & SC

11.00 – 11.30               Break

11.00 – 12.00               ‘Transition from paediatric to adult care’  with case discussion & video       SM & FC

12.00 – 13.00               ‘Lung transplantation’ with case discussion               SM & FC

13.00 – 14.00               Lunch

 

14.00 – 15.00               Workshop 1     (60 minutes)   

Workshop a:                Nutrition in CF, pancreatic enzyme use with case                                             discussion, CF related diabetes                                                   SN & SC

Workshop b:                Airway clearance techniques & nebuliser therapy                       FC & SM

15.00 – 15.30               Break

15.30 – 16.30               Workshop 2     (60 minutes)

                                    Repeat in alternate groups                

16.30-17.30                 Multidisciplinary team case discussions                    All                                                  (6 cases presented by Russian doctors from different clinics)

 Day 2

9.00 – 10.00                 CF care model in the UK (inc home therapies & funding) SM

10.00 – 11.00              ‘Microbiology and antibiotic treatment’                    SC

11.00 – 11.30               Break

11.30 – 12.30               ‘Fertility and pregnancy’ with case discussion           SM & FC

12.30 – 13.00              ‘Complications of CF’                                                  SC       

 13.00-14.00                 Lunch

14.00 – 15.00               Workshop 1     (60 minutes)                                       

Workshop a:                ‘Enteral nutrition’ (nasogastric tubes, gastrostomies) ‘Vitamins and other micro nutrients’                         SN & SC

Workshop b:                ‘Posture and exercise’   Other issues’ (SUI, end of life) FC

15.00 – 15.30              Break

15.30 – 16.30               Workshop 2     (60 minutes)

                                    Repeat in alternate groups

16.30 – 17.30              Multidisciplinary team case discussions                      All                                               (6 cases presented by Russian doctors from different clinics)

17.30 – 18.00              Presentation of certificates

In the event, strong interest and detailed discussion caused the workshops to overrun, therefore the topics from both days were amalgamated into one double length session on each day.

Review and Observations

As a non-expert observer I thought the program worked well. Advanced topics requested by our hosts were addressed but with strong reminders of the importance of getting the basics right; by sharing topics and their responses to the cases presented, the RBH team demonstrated the multidisciplinary approach.

 The visit was much appreciated; our hosts clearly felt it had been very beneficial. The level of questions and participation in discussions supported this.

The large number of delegates from regional hospitals was most encouraging; there are now specialist CF services throughout the country, supported and guided by the Moscow centre.

It was disappointing to hear about the unplanned move to new premises, continuing competition between centres and, partly as a result, that 18 months after his detailed assessment little progress has been made on implementing Prof. Tidden’s recommendations. There is still too little emphasis on preventing infections as opposed to curing them. However the centre does now have a dietitian and a physiotherapist; they are keen to get specialist training for them. We reached agreement in principle for RBH to provide and CHI to fund training for the physiotherapist from the Moscow clinic and encouraged them to find one or two additional candidates.

The online course ‘Managing the care of children and adults with cystic fibrosis’ run by Susan Madge, has now been translated into Russian; promotional leaflets were distributed at the school (http://www.cfcourse.co.uk/). Following successful completion of the course follow-up clinical placements with the paediatric and adult CF services at RBH can be organised. Currently Susan Madge, Elena Kondratieva and Nataliya Kashirskaya are in negotiation with pharma companies to help financially support this.

Jim Hopwood, March 2016