CF and Latvia – our project so far

Outside the CF Trust's office.
Inga Velde (physiotherapist), Dr Elina Puke, Dr Vija Svabe (Head CF Doctor) and Brandon Taylor (Project Manager).

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:

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:

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 29^th 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:

Free time during the 2009 Latvian visit to UK.

1. 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.
2. 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.
3. 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.
4. 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.
5. 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:
   1. CF service developments in the three countries.
   2. How to improve medical education in CF in the Baltic States.
   3. How can diagnosis of CF be improved?
   4. Explaining and offering twinning with UK CF centres: for example Vilnius with RBH, Riga with SGH and Estonia with ????
   5. Guidance on setting up Parents’ Support Groups.
   6. Examination of medication availability in the 3 (EU) countries.
   7. 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 23^rd to 27^th February 2009 by Dr Vija Svabe, Dr Elina Puke and a physiotherapist, Inga Velde.

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