CHI, with its partner at the time, Dzvin, undertook a major project with the Lviv Specialised Children’s Hospital in 2002. The collaboration took the form of a visit in April by a team from the Royal Brompton Hospital to Lviv and a return visit to UK by a Ukrainian team in November. At the end of 2002, we felt much had been achieved. The door was left open for continuing collaboration but the Lviv team decided they had seen enough to draw up their own development plans for improvements to CF care in the whole Western part of Ukraine.
Various proposals for follow on projects, possibly to include the entire Ukraine, came to nothing for various reasons; for example the Orange Revolution in late 2004 led to the dismissal of many staff in the Ministry of Health and we could not get approval for a visit. CHI’s attention turned to other projects, such as the one in Belarus. In June 2009, however, CHI received an appeal for help from the West Ukrainian CF association DZVIN in Lviv. This had been forwarded by the Director of the EuroCare CF project, David Sheppard at Bristol University. He knew we had worked in Ukraine and was powerless to respond directly as Ukraine is not in the EU.
CHI restored communications with Lviv – luckily, those who had taken part in the 2002 project were mostly still in post, including Dr Lyudmila Bober in Lviv, Dr Mark Rosenthal at RBH, CHI’s project manager, Tony Wolstenholme, and our invaluable interpreter/ translator Dr Ihor Hrytsyuk. This resulted in three visits as described below: two smaller visits from Ukraine to the UK, and a larger visit from the UK to Ukraine. Fuller details, including the programmes and reports, are included
Initial training at Royal Brompton Hospital, London, February and June 2011
The first step brought Dr Nataliya Rohovyk, a young CF physician and Katerina Yavna, Psychologist to the Royal Brompton Hospital. Both had adequate knowledge of English to undertake training at RBH. We sent them an invitation in November 2010 to them to come to UK; this allowed visas to be obtained, and flights and accommodation booked. They duly arrived on Sunday 20th February 2011. There is significant RBH documentation to be completed before training can begin.
Their programme can be seen here. As is often the case, we wished that their time at RBH could have been longer. But releasing them from their responsibilities in Lviv for extended periods is also a factor. It transpired that it would not be possible for Dr Rohovyk to return to UK before 2012 but it was feasible for Katerina Yavna to come back in June (within the validity period of her visa) to be at RBH from 18th to 29th June. Michele Puckey, Clinical Psychologist, kindly agreed to act as mentor to Katerina. The timing of Katerina’s visit was helpful too as it was on the eve of the departure of the RBH team to Lviv in early July, and so allowed some of the late planning of the Lviv visit to be completed with her in London.
CHI/ RBH visit to Lviv 3rd-9th July 2011.
Having agreed with our Lviv counterparts that a British team would visit Western Ukraine in mid year 2011, the first task was to choose the team’s personnel. Dr Mark Rosenthal would be the CF Consultant and the composition of the team became:
- Dr Mark Rosenthal, Consultant in Respiratory Medicine/ CF (see report)
- Emma Dixon, CF Physiotherapist (see report)
- Pat Stringer, CF Specialist Nurse (see report)
- Mary Jurd, CF dietician (see report)
- Rosie Barnes, Parents’ Support Group Adviser
- Tony Wolstenholme, CHI Project Manager (see report)
On arrival at the re-named Western Ukrainian Specialised Children’s Medical Centre. We were welcomed by the recently appointed Director of the hospital, Dr Andriy Synyuta. In the course of our discussions, he stressed the importance of mobilizing the parents (of CF children) to seek increased resources for CF care. By late morning, a joint clinic with Drs Bober and Rosenthal was underway and, after each child had been seen, the child and its parents had a dietary consultation with the team’s dietician, Mary Jurd. The dietary consultations were preceded by a visit to market in Lviv, accompanied by Katerina Yavna, to understand better the Ukrainan diet and to appreciate current food prices. Some typical food prices as of 3rd July in Lviv can be seen here.
The clinic and the dietary consultation extended until almost 19:00. After a short break, our hosts treated us to a very interesting tour of the historical parts of Lviv by night.
By Tuesday breakfast time, the British team was at full strength. Joint clinics for out-patients continued all day with separate physiotherapy and dietary consultations. Patients had travelled considerable distances to attend the clinics: as much as 1400km. Two families had come from the Carpathians, some 350km away. The children differed widely in age from a few months old to young adult (18½). All patients seemed to take adequate Creon, supplied at no charge. All day, in every scenario, there was a full and open exchange about the CF children’s conditions and ways to help them and their families. Language was not a barrier; Dr Ihor Hrytsyuk acted a chief interpreter but the local abilities of the CF staff to work in English is good: Katerina Yavna and Dr Nataliya Rohovyk are commended for their efforts!
Rosie Barnes and Tony Wolstenholme had a session with Oksana Darmoriz, President of West Ukrainian CF association DZVIN and Milana Skoryk about Parent Support Groups. Attention was drawn to all the information available at the (UK) CF Trust website and particularly a document there entitled “Standards of CF care“. Oksana and Milana asked if CHI could produce a list of low cost medications and antibiotics for use in Ukraine and some other countries. This will be investigated: what might be cheap in UK might not be cheap in Ukraine, or not registered for use in Ukraine.
Our hosts entertained us once more after work with a late night tour of Lviv but in a rather more humourous vein – a “Kumpel Tour“.
Wednesday was Conference Day. The programme can be seen here. The conference was well attended by medical specialists, CF parents and covered by the local TV company, who interviewed Dr Rosenthal, Rosie Barnes and Tony Wolstenholme. In the morning the home team gave a series of presentations. The UK team took the stage in the afternoon, gave presentations (the topics had been agreed in advance) and answered questions. The presentations can be seen here. By common consent, this conference was successful and complemented the practical exchange of knowledge of the previous two days.
The day was far from over! As guests of Dr Bober and her team, we all boarded a small bus in central Kiev and set off on the 130km journey to the Carpathian mountains: to Zakhar Berkut in the village of Volosyanka. This was a fine opportunity to enjoy the scenery in the South Western region of Ukraine. It became increasingly rural: in the style of the houses, the number of cattle and horse-drawn carriages, the abundance of wild flowers. Once settled into our rooms at the Zakhar Berkut Tourist Complex (a large modern hotel), we were entertained to a splendid dinner and the festivities of a “Night before Ivan Kupala”! This Festival is the Feast of St John the Baptist – seehttp://en.wikipedia.org/wiki/Ivan_Kupala_Day. The latter mainly consisted of us gathered around a fire beside the valley stream invoking various spirits and all in pouring rain! See some images of this part of Ukraine (site in Russian or Ukrainian), or click here (English). It was a very friendly and rather late night! The rain had almost ceased the next morning but the mountains were shrouded in mist. We went up the mountain in the chair lift. Horse-riding was an option. Strolling about, chatting, admiring the profuse wild flowers all very relaxed and capped with a splendid lunch in the restaurant “Café-Koliba” Vysokii Verkh (high summit).
The party returned by coach to Lviv and there were some farewells and exchanges of deep-felt thanks; both for the programme of work and for the generous hospitality of our hosts, particularly for the Carpathians excursion.
Unfortunately, not all aspects of the visit went so well. It was initially hoped that this visit would include both Kiev (capital of Ukraine) and Lviv (where we had previous contacts in Western Ukraine). The Kiev part had to be cancelled at the last minute, leaving us with the inconvenience of extra travel but without the benefit.
Dr Svitlana Skopychenko is President of the “Ukrainian Association of help to patients with CF” (comparable in concept to the UK’s CF Trust). She was the Solvay Manager in the Kiev office in 2002, and had provided some background information about the Association and its future plans. Tony Wolstenholme (Project Manager) arranged to meet her while passing through Kiev en route to UK, but even this came to nothing because of a late train.
Project Manager’s final remarks.
- First and foremost, as observed above, the most heartening features of the visit to Lviv were the improvement in the health of the children and the professional competence of the team led by Dr Lyudmila Bober.
- The hospitality we were afforded in Lviv and in the Carpathians was superb.
- It was disappointing that the Kiev leg of the project was cancelled at short notice.
- It was a privilege to watch the RBH paediatric CF team at work: so caring, professional, dedicated and with good humour.
- We shall try to bring a physiotherapist and a specialist CF Nurse from Lviv to RBH to learn more about these roles.
- It requires more study and correspondence with Dr Svitlana Skopychenko to identify what help can be given to the Ukrainian Association of Help to CF Families.
- The visit came in well under budget. Savings arose because of the generosity of our hosts and team members paying for themselves on a number of occasions.