A visit was made to Riga, Latvia, from Tuesday 19 to Saturday 22 March 2014 by Brandon Taylor (BT), Peter Weller (PW), and Tony Wolstenholme (TW) to review the possibilities for future CHI support in this important Baltic nation against the background of some previous contact between CHI and the cystic fibrosis (CF) paediatricians at Riga’s central hospital.
The visit was useful and we are now trying to consolidate appropriate aims and projects with a probable visit next year.
The hospital CF clinic has 56 patients, mostly children. There is a separate clinic room for out-patient visits, with in-patient facilities comprising two beds per cubicle, with the possibility of segregation. However the cross-infection control measures could be improved.
The incidence of CF in Western Europe suggests there should be up to 200 patients in Latvia (population 2.25 million). This means that many cases remain undiagnosed, probably dying in early childhood. Neonatal CF screening, which is now carried out in most European countries, would lead to early diagnosis and much improved treatment outcomes. However for screening to be effective, there has to be a protocol of management in place with a multidisciplinary team (MDT) to effect this. If screening was performed in Latvia there should be around 6 new CF patients diagnosed each year. At present there is neither the infrastructure nor adequate MDT to manage these infants. The proposal of a pilot CF screening study, initially just for the population of Riga, would act as a catalyst to establish a multidisciplinary team, eventually improving the care of all CF patients.
CHI team’s activities
The CHI team’s activities during this visit were of two main kinds.
- During most of 20 and 21 March 2014 consultations were conducted by PW for a total of eight children, accompanied by one or both parents, with Dr Vija Swabe, Dr Elina Aleksejeva and Dr Liene Kornejeva in attendance in various combinations at various times, and with TW and BT present throughout. PW applied his long experience with CF children at Birmingham Children’s Hospital and his up to date knowledge of advanced techniques in the UK and elsewhere in Western Europe, and gave detailed advice on management in each case.
- During these consultations it became clear that in Riga at present the training of physiotherapists remains inadequate in the sense that few have CF experience; also nutritionists and dieticians are not eligible to qualify for hospital practice and hence play an insufficient role in the present treatment of CF both in Riga and therefore in Latvia as a whole. PW recommended that Latvia must aspire to EU recommended standards for best practice for CF management, guidelines having been published in 2005.
- During the afternoon of 19 March the CHI team held a meeting with the Parents’ Support Group, run by Alina Belinska, with ten parents present and with BT, PW, and TW all present. TW gave a summary of CHI origins and recent activity, followed by a talk by PW on his Birmingham and UK experience, followed by questions to PW. PW emphasised that the philosophy of CF care must be preventive, with children maintaining ‘normal’ home and school life where possible.
The Parents’ Support Group announced a plan to hold a conference of CF care to which government ministers might be invited and future expenditure on CF discussed. CHI’s position remains that such a conference would remain premature until fully detailed costings for a neo-natal screening programme have been worked out – but in other respects encouraged the Parents’ Support Group to continue their important work.
The CHI team also had a brief meeting with Professor Gardowski, Head of Paediatric Services, who undertook to play a mediating role in any future contacts between CHI and the Latvia Ministry of Health.
The focus of the visit was the possibility of establishing a neo-natal screening programme initially for all new-borns in Riga. The Latvian team emphatically agreed that there should be screening in place for the whole of Latvia. CHI are aware that there was a neo-natal trial programme during 2007-8 which measured some 7040 babies. However CHI believes this programme was unsatisfactory, in (i) not including a repeat IRT test after 3 weeks, (ii) not optimising the DNA analysis for Latvian CFTR mutations, and (iii) not lasting long enough to give evidence for the effectiveness of universal neonatal screening. Provisionally, if parties concerned agreed and funding could be obtained, a new pilot screening study would take place in 2015-16.
Steps identified prior to presenting a case to the Minister of Health for installing universal neo-natal CF screening in Latvia included:
- consulting with Dr Kornejeva on the equipment needed to set up neo-natal CF screening for Latvia, based in Riga, with detailed and realistic costings of essential new or second-hand equipment (including updating of currently defective IRT equipment), and initially continuing for five years in the first instance.
- perhaps commissioning a Latvian-English translation of such costings from a Latvian national with fluent English. (NOTE: It was stated during discussions that other Baltic states might well be interested in participating in a neonatal screening trial. Subsequently, during the visit by Estonian CR Doctors Putnick and Vasar to Cardiff in late March 2014, it was confirmed that there is no neonatal screening in Estonia and that Drs Putnick and Vasar would like to be kept informed of CHI’s progress in Latvia, and attend any conference in which CHI was involved).
- holding off from any immediate further communication with the Parents’ Support Group until progress has been made with the strategy outlined above.
We are taking various further actions:
- Investingating the specification and costs of a new screening project.
- Investigating whether good working-order CF equipment from UK might be given to the Riga hospital, when it becomes available.
- Contact the manager of Abbott Pharmaceuticals (successor to Solvay) in Riga with a view to sponsoring a conference on launching a neonatal screening study in Latvia.
- Contact Karline de Rijcke of Cystic Fifrosis Europe to discuss a possible October conference. At the time of our visit, Nutritia was the only funder of the Parent Support Group.