Visit to Latvia 21^st -24^th 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

UK team.

• Dr Gary Connett: Consultant paediatrician in respiratory medicine, Southampton General Hospital (SGH).
• Sarah Payne: CF physiotherapist, SGH
• Tony Wolstenholme: Project Manager, CHI

Programme.

Logistics/ costs.

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° C to -20°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. Click here for more about George Armitstead.

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°C) morning, 23^rd 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 1/7^th 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.

Conclusions.

• 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.

Ongoing collaboration.

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 ½ day course in Valencia, Spain 15-16 June. How and who would fund this to be considered.

Tony Wolstenholme, 21^st 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.