Rosie Barnes and Tony Wolstenholme first met Professor Kondratieva (Elena) in St Petersburg at the Ostrova conference, 17-18 May and we had more time with her in Moscow at the 11th National Russian Cystic Fibrosis Congress 24-25 May. She told us then that she had booked a course in London in late July to improve her English. We arranged to meet her in London and tried to arrange something worthwhile from a CF point of view. The CF Trust was unable to accept a visit by her to their Bromley HQ owing to the CEO having a busy diary and other senior staff being either on holiday or unwell.
Rosie met Elena at her hotel am 2nd August. Rosie said much at the Moscow and St Petersburg conferences in her presentations about the CF Trust and its role and we sensed, not least from Professor Kashirskaya, that the Russian CF community would like to have a single unitary organisation such as the UK’s CF Trust, particularly in its interface with the Federal Government and national funders, ie the Russian Ministry of Health and Social Welfare. At their London meeting, Rosie gave Elena a further briefing on the CF Trust and Elena confirmed that there is (unfortunately) no single CF authority in Russia.
At short notice, Rosie arranged for Elena to attend an out-patients’ clinic at Royal Brompton Hospital, led by Drs Diana Bilton and Ian Balfour-Lynn pm 2nd August. I acted as Elena’s interpreter. The principal matter of interest at the clinic to Elena was the transfer of one 16 year old patient from paediatric to adult CF care.
More details of this visit are below. Elena has made more visits to London in 2014; to further improve her English, to work with the RBH, and to meet with Jim Hopwood.
As mentioned, the main event was the transfer of one 16 year patient from paediatric to adult care. The whole procedure interested Elena – the personal handover between 2 doctors, the very comprehensive docket of handover data, the colossal amount of records that had accumulated during paediatric care, the presence of adult specialist nurse, dietician and physiotherapist at the handover as well as the ambiance between patient, mother and the medical staff.
There were 21 other CF outpatients, some of whose appointments Elena witnessed. These points emerged: –
- RBH looks after 325 children with CF and almost 750 adult CF patients.
- After seeing voluminous paper patient records, Elena also saw how much RBH uses IT in the care of CF patients.
- Elena was interested in gastrostomy – how the patient can be prepared for accepting this device.
- She was interested in dietary advice – who gave it, how and particularly for CF patients with diabetes.
- She was interested in home intravenous treatment – how the parents are trained and monitored.
- She noted the range of responsibilities of the CF specialist nurse – and the outreach of hospital medical staff to the patient’s home.
- Elena had read the 2001 edition of the RBH’s Clinical Guidelines: Care of Children with CF, translated by CHI into Russian and available on our website. Dr Balfour-Lynn advised us that a new edition would be issued towards the end of 2013. We concluded that sufficient changes in care had occurred over the past 12 years to justify a new translation into Russian.
- Elena noted carefully the design of the outpatients’ clinic with its individual consulting rooms for each CF patient, the careful timing of appointments and the cleaning of each room on completion of every consultation. She remarked critically on their arrangements in Moscow.
It was apparent that Elena found a great deal of interest in this short visit. She developed some rapport with Dr Bilton and one follow-up option, particularly if Elena can improve her English further, would be for her to spend a week at RBH, particularly with Dr Bilton, biassing her time towards adult care. I quizzed her about the possibility of Ostrova funding such a visit to London but she had reservations, not least that St Petersburg based Ostrova might prefer to fund Dr Orlov in St Petersburg rather than a Moscow doctor.
Elena spent the day with us on Saturday 3rd August, arriving in Windsor by train from London.
We did a tour of Windsor Castle (Russian audioguide available), had lunch at home, walked by the Thames, helped her with a little shopping and ended her visit by attending Evensong in St George’s Chapel.