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.
For further information about the February 2008 programme in Riga, a record of the discussions and recommendations, click here.
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:
- 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.