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.

Strengths

• 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.

Weaknesses

• 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.

Opportunities

• 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.

Threats

• 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.

Christopher Rolles

B.Sc., F.R.C.P., F.R.C.P.Ch

(Retired Consultant Paediatrician, and Honorary Senior Lecturer)

Toni Rolles

D.C.H., F.R.C.G.P.(Retired General Practitioner)

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