CF and Latvia – the story begins
As we began thinking about the re-design of our own website, we looked at other cystic fibrosis related websites. On Cystic Fibrosis Worldwide’s website ( www.cfww.org )in March 2007, we found this plea for help from Latvia:
Doctors in Latvia are not interested in CF because the disease is incurable and patients die…. We have only 29 alive patients, the youngest is 6 months, the oldest 24 years old. About 8 babies should be born each year with CF, but we were only able to diagnose 1 in 2 years! We have no newborn screening, problems with the sweat test and doctors mostly don’t (want to) think of this diagnosis. We don’t have a CF centre. Patients come to me, the only CF doctor in Latvia, for control. They get most essential medicines for free and antibiotics in the hospital. The last 12 years colleagues from the Stockholm CF centre in Sweden have assisted us, so we were able to get some knowledge about CF. We need help to organize a system for diagnosis and treatment, but the authorities here are not interested in CF and even don’t know the needs of the patients. A father of a CF child who set up the Latvian CF Association told me about your meeting. We hope that this CF Day will make people aware and maybe help us to get the necessary support through the EP and the EC.
Sincerely yours, Vija Svabe, only CF doctor in Latvia
We made contact with Dr Svabe . We invited her by E mail, using our standard questionnaire, to expand on her problems, described above, and to tell us what kind of help she would like.
Dr Svabe soon commented:
I am Vija Svabe, pediatrician-pulmonologist. But my main job is teaching students in Pediatrics Chair at Riga Stradins university. I have been working with CF since 1973. From 1993, I received help from Stockholm CF center – they helped us magnificently for many years.
In my opinion, our main problem is that there cannot be care of CF patients in Latvia nationwide. We have just 2,3 million inhabitants in Latvia and 27 alive diagnosed CF patients. I have been advised that there will never be CF center with such small amount of patients and I am sure – then there will never be qualified care. If we had CF screening we could have about 100 CF patients ( and with good care, if they will live no less than 20 years).
……. I would be very happy if you could have any idea how to help my CF patients and especially those, who die without diagnosis.
We considered her completed questionnaire. We asked Dr Gary Connett of Southampton General Hospital (SGH), CF Paediatric Consultant to go to Riga, accompanied by our Medical Adviser, Dr Chris Rolles. Some time elapsed before the visit could take place but it went ahead in late February 2008 – the 29th to be exact!
They discovered that the majority of children with CF are presenting with failure to thrive in infancy and are dying of malnutrition or chest infections before diagnosis. Dr Svabe did not have a medical colleague to share and continue her work, nor did she have the professional back-up of a team of physiotherapists and dieticians. Certain key drugs and equipment were found not to be consistently available.
CHI’s Medical Adviser, Dr Chris Rolles, who was accompanied by his wife, a retired General Practitioner, has done an analysis of the strengths and weaknesses of the Latvian CF care system – a SWOT analysis. To see this click here.
Our reports of the February visit were shared with both Professor Gardovska and Dr Svabe in Riga.
It was now necessary to work out some effective ways of strengthening the CF care system in Latvia. After discussion we developed the following ideas:
We would write a letter to Prof Gardovska, recommending the establishment of a CF multi-disciplinary team at the Latvia University Children’s Hospital, which would become, in due course, the Latvian National CF Centre of Excellence and explaining the advantages. To encourage this process, the letter would also offer a provisional invitation to this “embryo” team to come to UK and to Southampton General Hospital to see how its CF team operates – the invitation would suggest that Dr Svabe should come with her nominated successor, a potential CF specialist physiotherapist and a specialist CF nurse/ administrator plus possibly a dietician.
- Dr Connett would prepare some educational material about CF for use in training Latvian medical staff at the primary care level with the aim of improving their capability to diagnose CF. In the meantime, it would probably be helpful to translate some appropriate leaflets on “CF awareness” into Latvian – suitable leaflets in English are almost certainly available from the UK’s CF Trust and the CF Trust is generous in allowing the translation of such material.
- Dr Connett had been asked by Professor Gardovska to draft an algorithm on the topic “Why does this child not thrive?” and he was happy to produce this.
- Noting that the Parents’ Support Group in Latvia has a rather minimal role, we asked ourselves how such groups develop. We could not decide how we might actually help build an effective group but …….
We thought the steps involved:
- Appointment of an active Chairman/ CF parent.
- Elect a Committee with standard functions.
- Produce educational materials in local languages
- Develop a PSG website, perhaps using the UK’s CF Trust website as a model.
- An initial injection of funds to get the Group “off the ground”.
- Set up a helpline.
- Allocate some resources to helping and advising a family when the child is first diagnosed with CF.
- We began to consider whether there could be advantages in developing a Baltic States approach, combining our current project with Prof Dumcius in Vilnius/ RBH link, Latvia and Estonia, where we know little about the CF service or whether there are children with CF. This might lead to a conference or series of workshops, perhaps in Vilnius. It might last 2-3 days and the agenda might include:
- CF service developments in the three countries.
- How to improve medical education in CF in the Baltic States.
- How can diagnosis of CF be improved?
- Explaining and offering twinning with UK CF centres: for example Vilnius with RBH, Riga with SGH and Estonia with ????
- Guidance on setting up Parents’ Support Groups.
- Examination of medication availability in the 3 (EU) countries.
- CF genetic similarities and differences.
Of these options, we have focused on items 1-3 – and the next major outcome was the visit to Southampton General Hospital from 23rd to 27thFebruary 2009 by Dr Vija Svabe, Dr Elina Puke and a physiotherapist, Inga Velde.
The below gives an outline of visit to the Cystic Fibrosis service of The Latvia University Children’s Hospital (link to English pdf), taken from a report by Gary Connett, Consultant Paediatrician and honorary Senior Lecturer at Southampton University Hospitals Trust.
Schedule of visit
CHI’s first visit to The University Children’s Hospital in Riga, Latvia was conducted by Drs. Gary Connett, Chris Rolles and Toni Rolles between 28thFebruary – 2nd March 2008. During this visit the team followed the following schedule:
Arrived late evening
08.30: Met at our hotel by Dr. Vija Svabe and travelled with her by trolley bus to the Children’s Hospital.
09.00-11.00: Discussions about CF care arrangements in Latvia with Dr. Svabe.
11.00-12.15: Dr. Connett’s Lecture to the Department (see attachment 1 for presentation).
12.15-13.30: Lunch in the hospital kitchen with Dr Svabe and hosted by Dr. Dzintars Mozgins the director of the hospital.
13.30-16.30: Joint consultations of CF children (see attachment 2 for case summaries).
16.30- 17.00 Meeting with Prof Dace Gardovska, Head of the Department of Paediatrics, a representative of the Governmental Health Ministry and other senior paediatricians.
9.00-10.00: Meeting with Arvis Eisaks, Country Manager for Solvay Pharma.
10.00-13.00 Joint consultations with CF children and their families.
Information about CF Care in Latvia (largely provided by Dr Svabe)
The Children’s Hospital in Riga was established in 1899 by an Englishman called James Armistead.
Latvia has a population of approximately 2.3 million people and a land area similar to that of Wales. The population is 60% native Latvian and 25% Russian. There are two medical schools in Latvia but the drop out rate from these is high because in general a career as a doctor in Latvia is not well paid. The system of health care is complex but many of the CF medicines are state provided or else can be reimbursed through insurance schemes. Children do not pay for hospital consultations.
The only resource in Latvia for CF care is based in the Children’s Hospital in Riga. This is a large centralised tertiary referral centre. Dr. Svabe is the only paediatrician providing CF services. She spends half of her time on CF care and half on University teaching responsibilities. The CF service is within the paediatric respiratory service. There are between 8-12 paediatric pulmonologists/physiotherapists in Latvia.
Dr. Svabe has had links in the past with the CF service in Stockholm, Sweden. This was initiated in 1993 with interactions occurring approximately twice/year. The nurse and paediatric pulmonologist from Sweden have visited the Children’s Hospital although this link is not ongoing currently.
On the advice of the Swedish CF visiting pulmonologist a parent’s organisations was established. This organisation is not particularly active currently although we did have the opportunity to meet the convenor of this group.
There are 28 patients currently attending the tertiary centre aged 6 months to 24 years. The highest number of patients at any time has been 31. Approximately 15-18 of these diagnosed patients are cared for within the city of Riga and the remainder have been referred in from outside and travel to the capital for hospital consultations.
Dr Svabe thinks that, on the basis of cord blood sampling genetic studies, there should be up to 8 new cases of cystic fibrosis diagnosed each year in Latvia (there are approximately 20-22,000 births/year in Latvia). This is considerably greater than the number of cases that are currently referred to her for diagnostic sweat tests. Based on these figures there should be up to 200 patients attending the regional CF centre for care. Dr. Svabe does not believe that any other paediatricians are caring for children with a diagnosis of cystic fibrosis in Latvia.
Latvian civilians attend general practitioners as their first point of contact for health care problems. Unfortunately, general practitioners’ knowledge of paediatrics is often poor and there are no paediatricians working in primary care services. One can only assume that the majority of children with CF are presenting with failure to thrive in infancy and are dying of malnutrition or chest infections before diagnosis.
The biochemistry department in the Children’s Hospital has the only sweat testing equipment in Latvia. This uses the nanoduct method. The more traditional Gibson and Cooke method (as still used in Southampton and many other regional centres in the UK) was rejected by the Latvian association of biochemists. Up until 10 years ago Dr Svabe performed all sweat tests and the titration of analytes herself. Research grants have funded genetic studies for CF in Latvia but newborn screening is not currently available. Cascade screening of relatives of index cases is available. Seventy-five percent of CF genes in Latvia are the most common DF508 mutation.
Most patients are on a similar treatment regime. All those with pancreatic insufficiency receive Creon 25,000 (or 10,000 through a reimbursement scheme). Creon micro (a formulation for infants) is not available.
Children receive the fat soluble Vitamin E and many take Acetylcysteine by nebuliser two to three times a day and also by mouth. This is a “mucolytic” agent often used in eastern European countries but for which there is little scientific evidence of benefit.
Patients do not have access to nebulised antibiotics such as Tobramycin and Colomycin or the mucolytic agent rhDNase although these drugs do occasionally become available as a result of budgetary negotiations for limited periods of up to 3 months at a time.
Intravenous antibiotics are available. These include Piperacillin, Gentamicin, Amikacin and Ceftazidime. Oral Ciprofloxacin is also available.
Most patients use outdated nebuliser systems that were originally donated from Sweden. This equipment is not state provided.
Notes on the meeting with Arvis Eisaks Country Manager for Solvay Pharma
Dr. Rolles began this meeting by discussing the history of CF developments in Russia, India and more recently Lithuania.
Arvis Eisaks explained that currently Creon is Solvay’s 3rd most important product in cash terms in Latvia but approximately 90% of the local market is over the counter prescribing for digestive complaints and gastroenteritis rather than proven pancreatic insufficiency. There has been a long tradition of using pancreatic enzymes in this way in the Baltic states and a relatively poor understanding among the local population and some doctors as to the proven indications for the use of these medications.
Unfortunately, therefore, Solvay currently had only a small interest with regard to the use of Creon for CF in Latvia. However, with improved diagnostics to identify the large number of children who are currently escaping diagnosis, and access to appropriate care, this could lead to an increased market for Creon and the situation could change. He was keen to support a project to address this issue.
Discussions centred around educating primary care physicians (“the gate keepers”) but Dr. Eisaks pointed out that the problems were probably more related to secondary care paediatricians not considering the diagnosis of CF when individuals are referred to them. Dr. Connett pointed out that Prof Gardovska, the Head of Paediatrics and Infectious Diseases had talked about her meeting yesterday, concerned with care pathways for the febrile child. A similar problem based approach with an algorithm for the child with failure to thrive might usefully be developed that includes early consideration of the need for a sweat test and/or CF genotyping. This could be promoted either through Latvian Health Care Journals, inclusion of such materials in the undergraduate syllabus or Post Graduate Educational Meetings.
Dr. Rolles stated that the CF Trust might be willing to help with the provision of parent information that could be translated into Lithuanian. Further discussions considered the possibility of project planning across all of the Baltic States to increase the “patient power” to raise CF issues at a political level more effectively.
Observations and Suggestions
The Children’s Hospital in Riga is clearly a centre of excellence for the delivery of tertiary specialist paediatric services. This centralised model of health care for rare and life threatening conditions has enabled paediatricians to develop good services to meet the needs for such children throughout the whole of Latvia. However these services do depend upon clear referral pathways to ensure that sick children access the most appropriate specialist service and it would appear that this is not currently happening for the majority of CF children in Latvia. Whilst the services for CF have developed to a high standard within this institution they have depended almost exclusively on the hard work and dedication of a single paediatrician, Dr Svarbe. CF care in Latvia is currently critically dependent upon the continued efforts of this one individual and there does not appear to be any other paediatrician receiving specific training in this speciality. There is clearly a need to train a larger number of interested paediatricians in CF care to support Dr. Svabe and to plan for the continued provision of CF services into the future.
The current model for specialist care for CF in Latvia is very much consultant lead and there is no multidisciplinary team akin to that which has been developed in many other countries. There is no doubt that CF sufferers would benefit from a care package delivered by an expanded team including input from physiotherapists, dietitians and nurses with specialist skills in the management of this condition. This might facilitate the move to a less hospital centred approach to care and keep patients more healthy within their local communities – in effect, as out-patients.
Whilst there is a microbiological basis for antibiotic prescribing in Latvia, the only specimens processed currently are either expectorated sputum or lavage specimens obtained by fibre optic bronchoscopy. This means there is no information obtained about the presence of infecting bacteria in young non-expectorating CF sufferers unless they are bronchosocped (most children cannot expectorate until at least the age of 7). It is not practical to carry out such tests very often (i.e. once or twice a year). The visiting Swedish CF team had recommended laryngeal aspirate specimens in non-expectorating children but this invasive specimen collection method has understandably not been taken up because it is poorly tolerated by patients. Most CF centres apart form those in the Scandinavian countries do not use these types of specimens. The use of cough swabs as an alternative means of detecting infection in non expectorating children would be a major advance. This would enable treatment of early infections before the progression to severe complications such as advanced bronchiectasis. Nebulised antibiotics have been perceived as being poorly effective in the Latvia clinic. This might be for a number of reasons including their relatively late introduction for treating patients after established infection in more severe disease, poor compliance and/or poor drug delivery from out of date nebuliser systems. In the UK and many other countries, the introduction of nebulised antibiotic therapy, coupled with the provision of good nutrition, is believed to have been one of the major advances in CF care. It would seem preferable to opt for this approach to preventing CF lung infection with relatively inexpensive nebulised antibiotics such as colomycin and the soon to be generically available tobramycin rather than mucolytic agents such as acetylcysteine. There is now good evidence for the use of relatively inexpensive hypertonic saline as an agent to promote mucociliary clearance and perhaps the increased use of this agent could be usefully explored as an aid to clear airway secretions with physiotherapy. Nebulisers are not state funded. PARI-LC nebulisers are now cheap and highly effective costing around £40 to purchase in the UK. Providing this sort of equipment to the Latvian CF service would be a hugely cost effective means towards ensuring that prescribed nebulised therapies are effectively getting into patient’s lungs.
There is clearly a major problem with under diagnosis of CF throughout Latvia. This is probably happening at a primary care (GP) level but the diagnosis must also be being missed by paediatricians, to whom sick infants are being referred but they do not consider this diagnostic possibility. As already alluded to in the discussions with Dr. Eisaks, there are many vital opportunities to increase awareness about CF throughout Latvia. In particular a care pathway could be developed whereby children presenting with failure to thrive enter a diagnostic process that includes sweat testing. This “gold standard” diagnostic test needs to be more readily available to all paediatricians as an investigation that they can request when faced with poorly grown children and/or those with chronic respiratory symptoms. An alternative or complementary consideration would be the introduction of newborn screening throughout Latvia for CF. Genetic studies indicate that there is a very high carrier rate of common CF mutations and so screening test based on a few genotypes is likely to be highly successful in diagnosing the majority of patients with severe early onset phenotypes. This should prove cost effective in avoiding the initial presentation of severely affected individuals with advanced disease and therefore needing more prolonged in patient stays. There is clearly a well developed genetics unit with a motivated team, which could successfully take such an initiative forward.
There are clearly opportunities to link more closely with the pharmaceutical industry as already alluded to in the discussions that occurred with the Country Manager of Solvay Pharma. Similarly, more could be done to help develop the local parent’s group. Accessing materials and information from the UK CF Trust would be of benefit here.
Our visit to Latvia was most enjoyable. We were looked after extremely well and there was genuine interest in our visit coupled with a desire to try and improve the paediatric service where possible. Professor Dace Gardovska, the Head of The Department of Paediatrics has requested a copy of my report from the visit and I will forward this to her as well as to Dr. Vija Svarbe who provided most of the above information. I particularly enjoyed sharing consultations of patients with her and was impressed by her clear documentation, knowledge and dedication to the care of CF children. I appreciated the opportunity to establish such a link and find such common ground in a foreign country.
Consultant Paediatrician, Honorary Senior Lecturer
Southampton University Hospitals Trust, UK
Analysis 2008 Visit to Latvia
This page gives an analysis of the visit by Child Health International to the Cystic Fibrosis Service in Riga, Latvia, March 2008. It includes a few comments on the CF service in Latvia, to underline the points made in Dr Connett’s excellent and detailed report. We consider these in the form of a S.W.O.T. analysis (Strengths, Weaknesses, Opportunities, Threats). We recognise that these comments are based on impressions obtained during a very brief visit and will not represent the whole picture of CF in Latvia. However, they are presented in the hope that they may be useful in the development of what is already very admirable work. We thank our hosts, particularly Dr. Svabe, for their warm hospitality.
- Latvia is a small country with centralised tertiary paediatric services ideally suited to the continuing development of a centre of excellence for CF, a model which has been shown to produce the most favourable outcomes for CF patients.
- CF services are led by a dedicated, respected and well qualified professional, Dr. Svabe, who knows all her patients and their families, well. She has provided continuity of care and support over many years and has been motivated to maintain her expertise in CF.
- Dr Svabe has well documented personal records on all the patients.
- The Children’s Hospital is a well-run, friendly place and provision is made for parents to stay with their children.
- Provision of the essential drugs for CF care is free.
- Many of the biochemical and microbiological tests required for CF care are available and there is an enthusiastic genetic service.
- There is a rudimentary parents’ group.
- There appears to be an interest and willingness to look into the development of CF services from hospital management, academic paediatrics and from the government.
- The underdiagnosis of CF suggests that, outside Riga, CF is poorly understood both by GPs and by regional paediatricians.
- Dr. Svabe combines her CF work with academic teaching, which has a varying timetable. This produces organisational difficulties for the scheduling of very necessary routine follow up appointments. It is not possible for her to work within a team framework. Ideally she would have some administrative help, and professional backup including physiotherapy and dietetics. She has been unable to identify a medical colleague to share and eventually continue her work. The lack of a team approach will have understandable implications for the patients, but also places a heavy burden, not least an emotional one, on Dr Svabe, who inevitably becomes closely attached to her patients.
- Dr. Svabe’s own records are independent from the hospital records.
- Certain drugs and pieces of equipment, such as nebulisers, required for CF treatment are not freely available, and although they are sometimes provided free, this is subject to the vagaries of budgets.
- A few essential biochemical and microbiological tests are unavailable.
- The parents’ group, at the moment, lacks impetus.
- There appears to be a lack of interest among junior and other medical staff to become involved in CF work.
- The strengths of the CF service in Latvia far outweigh the weaknesses and provide an excellent springboard for future development, which would rapidly increase the number of children saved from premature death and improve the quality of life for known cases.
- Research potential is considerable particularly if there could be collaboration, e.g. with the other Baltic States, starting with a well organised data base linked with genetic studies.
- Funding could be sought from the E.U., International CF organisations and also from pharmaceutical companies.
- The English CF trust is willing for any of its literature to be used. Translation and dissemination of this might form the basis of a project by which the Latvian CF parents’ group became energised as well as spreading information about CF and raising funds.
- In Western Europe, CF is seen as an essential part of paediatric pulmonology, although gastroenterology forms a major component of CF and some leaders in the field are gastroenterologists rather than pulmonologists. CF is seen as an exciting challenge with opportunities for research and travel. A twinning programme between Riga and a centre such as Southampton could increase enthusiasm to take on this work as well as giving opportunities for mutual exchange of ideas and data and for experiencing different approaches to practice. Such a twinning would be multidisciplinary, and include parents.
- The use of educational meetings, either in Riga or in the regions for GPs and paediatricians to consider CF as part of the spectrum of “Failure to Thrive” would increase awareness of the condition as well as hopefully upgrading other aspects of paediatric care.
- The failure to develop a team to support Dr. Svabe’s work and continue it in the long term.
- Perpetuating the idea that CF children are not interesting and will “die anyway”
- The concept that improving outcomes in CF depends on using the latest and usually most expensive treatments, rather than on doing the basic things – such as nutrition, physiotherapy, parent education and attention to clinical detail – regularly and well.
B.Sc., F.R.C.P., F.R.C.P.Ch
(Retired Consultant Paediatrician, and Honorary Senior Lecturer)
D.C.H., F.R.C.G.P.(Retired General Practitioner)
Visit by Latvian CF team to UK 22nd-27th February 2009
The Latvian team consisted of Dr Vija Svabe (Senior CF specialist), Dr Elina Puke and Inga Velde (physiotherapist).
The host Consultant at Southampton General Hospital was Dr Gary Connett.
The project manager for the visit was Brandon Taylor, assisted by Judi Maddison.
|1230||Latvian team arrive at Gatwick on Air Baltic Flight BT 651||Met by Tony Wolstenholme. Drive to Southampton|
|1530 approx||Arrive at home of Drs Rolles||Latvian team will be accommodated at Bassett Wood House, Bassett, Southampton.|
|1600||Welcome reception and programme briefing||Brandon Taylor and Judi Maddison present|
|0930||Attend CF team meeting||At SGH. Arrive no later than 0915.|
|1100||Meet adult CF team|
|1130||CF Ward round|
|1400-1600||CF Clinic||Annual reviews|
|0930-1155||CF Clinic||Nurse-led. First part of annual assessment.|
|1200-1245||CF Microbiology||With Dr Graeme Jones. (team must have BCG vaccination against TB)|
|1330-1600||CF Review Clinic|
|Evening||Social event||A visit to Winchester|
|0930-10.30||CF team meeting|
|11 am||Meet Julie Argent Radiologist – CF x-rays|
|1130-1230||Child Health Grand Round|
|0908||Catch train to London and on to Bromley south via London Victoria., arriving 1104.||Visit to CF Trust at Bromley, accompanied by Brandon Taylor and Tony Wolstenholme|
|1130-1400 approx||CF Trust|
|pm||Sightseeing in London||O/c return to Southampton|
|0930 approx||Depart Southampton to Gatwick|
|1130||At Gatwick Airport||Check-in|
|1320||Depart Gatwick on Flight BT 652 for Riga|
Aspects of CF care in Latvia in 2009
During the visit several issues emerged regarding the CF health service in Latvia. Some of them were recognised and reported by Drs Connett and Rolles in February 2008. For the record, they included:
- CF diagnosis. Only 1-2 cases of CF are diagnosed each year among new-born children; some 5-6 expected cases escape detection. The failure to diagnose is linked to a lack of education at the primary care level.
- CF awareness. There seems to be a broad lack of awareness of CF in Latvia, which could be tackled by the publication of more articles about CF in relevant family and health journals, newspapers etc.
- Nebulisers. There is uncertainty about the nebulisers being used by CF patients. Some are secondhand Swedish nebulisers. Dr Svabe advised that new nebulisers were funded and should be delivered this year but this may not materialise owing to a difficult financial situation in Latvia. Dr Connett has recommended PARI-LC nebulisers, costing about £40 each in UK. The UK’s CF Trust has offered to fund 2 nebulisers per year at a cost of up to £1000/year.
- Parents’ Support Group. There is no active Latvian Parents’ Support Group.
- Physiotherapy. The senior physiotherapist with CF skills is currently on maternity leave. Her current relief, Inga, has limited experience of CF specific physiotherapy and confines treatment to in-patients. It is not usual for her to teach parents how to give physiotherapy to their children at home.
- Dietary advice. There appears to be no specialist advice available to CF patients on nutrition.
- CF education. The UK’s CF Trust permits the translation of any information published by them into Latvian.
At the end of the visit by Dr Svabe and colleagues, we discussed how we might continue to collaborate to improve the CF service in Latvia. For our visitors, they naturally wanted time to reflect on all they had seen and learnt and we shall need to take into account their ideas.
The following items are defined as matters of mutual interest:
- The early introduction of new-born screening would obviate the need for greater education of doctors at the primary care level to diagnose CF.
- It may be helpful if Dr Gary Connett with some members of his multidisciplinary team could spend a few days at the Latvia University Children’s Hospital in a combination of clinics and workshops.
- There may be a case for giving Inga Velde more CF physiotherapy training, especially if EuroCareCF funding remains available.
- Notwithstanding the limited resources for CF education in Latvia, it should be worthwhile to bring together CF parents, perhaps on a Saturday morning, to try and launch an effective Parents’ Support Group. This might be linked to (2) above.
- The situation with Nebulisers should be kept under review.
- The Latvian team is warm to the idea of a “Baltic States CF conference/ workshop”. Namely: A conference/ series of workshops, perhaps in Riga, Vilnius or Tallinn. It might last 2-3 days and the agenda could include:
- CF service developments in the three countries.
- How to improve medical education in CF in the Baltic States.
- How can diagnosis of CF be improved? Is new-born screening the answer?
- Explaining and offering twinning with UK CF centres – Vilnius with RBH, Riga with SGH and Estonia with University of Cardiff Medical School
- Guidance on setting up Parents’ Support Groups.
- Examination of medication availability in the 3 (EU) countries.
- CF genetic similarities and differences.
- To improve public understanding of CF, CHI will seek permission from Channel 4 TV to dub their film ” A boy called Alex” into Latvian and for the film to be shown on Latvian TV.
Child Health International thanks Dr Gary Connett and his team at SGH, Mrs Rosie Barnes and her staff at the CF Trust for hosting the visitors and Drs Chris and Toni Rolles for accommodating our guests.
30th March 2009 Tony Wolstenholme
Visit to Latvia 21st -24th January 2010
Purpose of the visit.
This visit formed part of a continuing programme of collaboration with the University Childrens’ Hospital, Riga and the CF team, led by Dr Vija Svabe, In this instance, Dr Gary Connett would give two lectures on CF. One was to hospital doctors about recognition of CF and its general treatment. The second would be to some 400 Latvian-wide paediatricians and practitioners working in primary care, aimed at raising the index of suspicion for the diagnosis of CF and referral to the children’s hospital for diagnostic sweat testing and subsequent specialist care. It was planned to see 8 children with CF in clinic, review their cases and offer guidance both to hospital physiotherapists and parents on the application of physiotherapy.
Hosts in Riga.
- Professor Dace Gardovska: Head of the Paediatric Department, Riga Stradins University.
- Dr Vija Svabe: Senior CF paediatric specialist
- Dr Elina Puke: paediatric respiratory doctor
- Inga Velde: physiotherapist
- Dr Gary Connett: Consultant paediatrician in respiratory medicine, Southampton General Hospital (SGH).
- Sarah Payne: CF physiotherapist, SGH
- Tony Wolstenholme: Project Manager, CHI
|21st January||UK team depart Gatwick on flight BT652 at 1310. ETA Riga 1750 local.|
|9:00-10:00||Lecture by Dr. G. Connett at the Children’s University Hospital conference|
|10:00-11:00||Meeting with different specialists (Prof. D. Gardovska, gastroenterologist Dr. I. Kaze,)|
|11:00-13:00||Clinic with CF patients|
|13:30-16:30||Clinic with CF patients|
|16:30-18:00 1900||Free time Dinner|
|10:00- 11:30||Lecture by Dr. G. Connett at the Latvian Paediatric Association conference|
|13:30-16:30||Meeting with CF patients|
|19:00||Evening event ( La Traviata at Latvian National Opera house)|
|24th January||UK team depart Riga on flight BT651 at 1130. ETA Gatwick 1220 local.|
The visit and programme were agreed between the participants by E Mail.
No visas were required as Latvia is in the EU.
Flights were booked on-line with Air Baltic. 3 return flights (with meal) cost £495.
Accommodation was booked at Hotel Sesame (west bank of the River Daugava). 3 single rooms, B+B, for 3 nights cost £380. The hotel was adequate and warm (the temperature during the visit was -10 Degrees C to -20 Degrees C – the coldest winter in Latvia for about 20 years).
The overall cost of the visit, including other travel costs and subsistence, was £1220.
The exchange rate at the time of the visit was £1 = 0.713 Lats
Account of the visit.
The CHI team landed at Riga airport about 1735, collected baggage and, by prior arrangement, were taken by taxi to the Hotel Sesame – about 15 minutes’ drive from the airport.
On Friday morning, Dr Puke collected the team from the hotel and drove us to the University Hospital. This was founded by a Yorkshireman and one-time Mayor of Riga, George Armitstead in about 1906.
New facilities are under construction; otherwise the buildings are predominantly of Soviet style.
Once a week on a Friday morning, the hospital doctors meet. This was, therefore, an opportunity for Dr Connett to give a presentation about CF, The modern management of cystic fibrosis, to some 60-80 Doctors and answer some questions. The presentation was also video linked to another medical institution in Latvia. The talk was in English, without an interpreter and seemed to be understood. The PowerPoint presentation can be seen here. Dr Connett described the current multiple strands of CF care and the current status of CF pharmacological research. He highlighted the importance when dealing with CF of doing the simple low-cost things well. He covered four important elements of modern management:
- Newborn screening (not yet available in Latvia)
- Multidisciplinary team care
- Nutritional care
- Respiratory care
In the Latvian context, there are 30 registered children attending the national centre. There should be higher numbers – perhaps 90-100 or more. It is estimated that there are 6-8 new cases each year – many are being missed. Dr Connett mentioned the benefits of nebulised hypertonic saline solution for enhancing airway clearance. It was important that parents have the capability to monitor their child’s health and that any respiratory exacerbation be treated urgently.
A meeting took place with Professor Gardovska and several Doctors associated with CF care. Professor Gardovska expressed an interest in using Standards for CF Healthcare, developed by the UK’s CF Trust for assessment of UK CF centres, in her own hospital. She felt that this would be supported by a senior Professor Paediatrician in the Latvian Ministry of Health. The specialisations included dietology (Dr Diana Lagzdina), palliative care, psychotherapy and gastroenterology.
4 children with CF attended the clinic. Dr Connett has a record of their condition and advice given (confidential). 3 of the 4 children scheduled to attend the Saturday clinic came. All families spent time with Inga and Sarah, reviewing physiotherapy techniques and receiving advice. These observations from the clinics are noted: –
- Some families came a long way to see Dr Connett – in one case – 320 km.
- There is no mechanism for taking or analysing cough swabs to identify CF pathogens responsible for lung infection in non-expectorating patients.
- There is some lack of confidence in the results of sweat testing.
- Adequate doses of Creon are the norm.
- There was no evidence of an active Parents’ support Group.
- Tobramycin is not easily available in Latvia.
- Not all desirable vitamin supplements are easily available, eg Vitamin D, in conjunction with vitamins A, E and K.
- Little formal CF dietary advice is available within the out-patient service.
On Friday evening our hosts generously treated us to dinner at the Flying Frog restaurant.
The Latvian Paediatric Association organises a monthly meeting at a Riga venue (Club). Some 400 paediatricians assembled on a wintry (-15 Degrees C) morning, 23rd January. The meeting was supported by pharmaceutical companies, medical equipment and book suppliers (most books in Latvian but many in English). More than 95% of the Doctors were female.
Dr Connett presented his lecture, Diagnosing Cystic Fibrosis. Dr Elina Puke interpreted into Latvian. Introducing his talk, Dr Connett explained that he worked in Southampton and that one of its claims to fame was that the Titanic had set sail from Southampton in 1912. Unfortunately, she did not reach her destination but sank, after hitting an iceberg. Showing a picture of an iceberg, Dr Connett likened the small number of identified children with CF in Latvia to the ‘tip of the iceberg’ and the bulk of the iceberg, below the surface, to the large number of children with undiagnosed CF. His presentation slides can be seen here.
After defining CF, Dr Connett described the symptoms that should make the paediatricians suspect a case of cystic fibrosis. He explained how CF can be diagnosed. In Latvia, based on a study, 1 person in 28 carries the CF gene and 1 in 3250 births will produce a child with CF.
A worried parent brings a child to see the doctor. The child is ‘failing to thrive’. There could be many reasons. The Doctor – with CF as a possible explanation should ask herself 3 questions: –
- Does your child taste salty when kissed?
- How often does your baby poo and what is it like?
- Does your baby have a persistent wet cough?
Concluding his presentation, Dr Connett returned to his slide of the iceberg, which Titanic had struck. He hoped, on his next visit to Latvia, that the iceberg would be inverted – the 6/7ths below the surface would be diagnosed cases of CF and only 1/7th of CF births would be undiagnosed.
Dr Connett took many questions. Tony Wolstenholme made a short presentation in Russian (which seemed to be acceptable to the audience) on the role and activities of Child Health International.
Outside the auditorium, further contacts were made, including with an American born Latvian, Edvins Grechko, just setting up a paediatric clinic in Riga.
Dr Connett’s lecture is potentially very significant. He was addressing a large number of doctors, located all over Latvia, who would be the primary point of contact for a parent with a possible CF child.
CHI hosted a simple but enjoyable lunch at the Lido.
The second clinic with a further 3 children took place on Saturday afternoon. Some complex cases – in the absence of the patient – were reviewed together. Problems with the BCG vaccine, administered on Day 2 of life, were mentioned.
For the ‘finale’ of the programme, our hosts treated us to a lovely evening at the Latvian State Opera House and a performance of La Traviata.
- Dr Connett gave two major lectures which, hopefully, will lead to earlier and more reliable diagnosis of CF.
- 7 cases were reviewed, thereby sharing experience and knowledge.
- There are encouraging signs of a CF multidisciplinary team forming around Dr Svabe.
- There was an effective exchange of physiotherapy techniques and advice both with professional physiotherapists and families.
- More can be done to provide formal advice on nutritional care to Latvian families.
- A full range of vitamin supplements does not seem to be available.
Items for consideration include: –
- Young Doctors to Southampton. Dr Elina Puke to come to SGH and spend a week deepening her understanding of CF diagnosis and care and for Dr Inita Kaze, gastroenterologist, also to spend a week at SGH but CF diet orientated. Dr Inita, in addition, to undertake a short course at the Institute of Human Nutrition.
- CF care standards. The CF Trust sets standards for CF care in UK – and assesses centres against these standards. Professor Gardovska expressed an interest in applying such a standard within her Department, perhaps insofar as it affects CF care. Action. To liaise with the CF Trust on releasing relevant documentation.
- Dietary information. Provide CF Trust’s dietary advice (leaflets) to Dr Svabe/ Dr Diana Lagzdina for adaptation to Latvian use – and dissemination to CF families.
- Latvian physiotherapist to attend ECFS pre conference physiotherapy training. It might be beneficial for Inga Velde to attend this 1 � day course in Valencia, Spain 15-16 June. How and who would fund this to be considered.
Tony Wolstenholme, 21st February, 2010
Child Health International thanks Dr Gary Connett and Sarah Payne for giving their whole-hearted commitment, time and experience to this project – and to Dr Vija Svabe and her colleagues for their hospitality and courtesy.
Dr Connet made a short visit to Latvia in December 2011. As a result of that visit, CHI arranged for Dr Diana Lagzdina from Latvia to attend the CF course at Leeds Metropolitan University early March 2012, where she joined Dr Turcu from Chisinau. After the course she travelled south and spent time with the Southampton Cystic Fibrosis team. The visit gave her a wider perspective of CF treatment, especially the role of the multi-disciplinary team. She took these home to Riga. It was not easy to get the new ideas accepted. However, in July we were delighted to hear that the first multi-disciplinary team had been set up in Riga.
We see this as a very promising step forward and are looking forward to further interaction between the Southampton team and the Latvians, and think CHI still has an important role to play.
Visit to the Riga Children’s Hospital and the Latvian CF Conference, October 2015
Brandon Taylor, CHI Project Manager and Dr Maya Desai, Consultant Respiratory Paediatrician, Birmingham Children’s Hospital, Birmingham, visited Riga to explore the options for restarting work in Latvia.
One day was spent at the Children’s Hospital CF unit where they met the local medical team, toured the facilities and saw 4 patients in clinic. The second day was spent at the conference organised by the Latvian CF Society. They also met 2 Russian doctors and the President of CF Europe.
The major conclusions were:
- The CF team at the Riga Children’s Hospital would benefit from a visit to a CF centre in the UK to see how CF care can be delivered and to learn about some of the interventions used here.
- A further visit to Riga by a team from the UK may be beneficial in the future.
- New-born screening is probably the most cost-effective way to improve the outcomes of children with CF in Latvia. As there is already a newborn screening programme for 2 other conditions, adding CF screening to this will be less expensive than setting it up from scratch.
Visit of Latvian doctors to CF Services at Birmingham Children’s Hospital: 3-7 October
Following the visit by Brandon Taylor and Dr Maya Desai from Birmingham Children’s Hospital to the international CF conference in Riga last year, a return visit was made to BCH by members of the Latvian team: Dr Elina Aleksejeva (CF consultant), Signe Kursite (CF nurse) and Arta Gaile (CF physiologist). The context of the visit was the efforts already made by CHI to help establish a neo-natal screening programme for all new-borns in Latvia.
The position prior to October 2016 was that little progress was being achieved to obtain funding through the Latvia Ministry of Health. However the Latvian delegation arrived in the UK with the good news that the recently appointed Minister of Health (formerly from the Riga hospital) had recently announced a funding stream for neo-natal screening in that country, beginning January 2017. The Birmingham visit therefore took place against this background and gave a very timely context for the study of advanced UK techniques in CF screening.
The timetable for the visit, constructed by Dr Desai and her team, in outline was as follows:
Tuesday 4 October am: Meet and greet, and hospital tour followed by in-patient ward round
Tuesday 4 October pm: visits to the Birmingham physiology team, to the dietician team, to the nursing team, and discussions with each
Wednesday 5 October am: Bronchoscopy demonstration by Dr Desai, meeting with CF and respiratory staff, followed by sweat-testing demonstration and practice for Dr Aleksejeva
Wednesday 5 October pm: CF clinics
Thursday 6 October am: CH clinics
Thursday 6 October pm: visit to new-born screening labs, new-born screening nursing team, and closing remarks by Dr Desai
In the context of the opportunity to establish neo-natal screening in Riga from early 2017 the Latvian delegation expressed unanimous pleasure and gratitude for the opportunity to discuss contemporary techniques for CF screening but also to practice relevant methods, as well as discuss nursing and physiotherapeutic techniques. They express tremendous gratitude to CHI and return to Riga full of optimism for the new programme, while being wary of the hard work involved in establishing effective methods for monitoring, record-keeping, and staffing of the new facility. 4. It remains open whether CHI will need to provide further funding assistance to Latvia. On the one hand there are positive indications that CHI’s original objective stands a good chance of success during the year 2017 and onwards. However it would be prudent to remain in close contact with the Latvia team to ensure their objectives and requirements are in fact being met. Dr Desai has generously made herself available for discussion both of general matters and particular cases. Meanwhile CHI should keep in communication with Dr Aleksejeva throughout the autumn and onwards and be ready to offer to support on a case by case basis, should the need arise.
We understand newborn screening for CF will be introduced in Latvia this year and have offered technical support if required. We will also offer further training visits to ensure that the team have the capability to provide good quality care to the increased number of patients expected to be diagnosed.