CHI
Child Health International
Helping children with Cystic Fibrosis live life
The 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.
The programme
| Date | Time | Event | Comments |
|---|---|---|---|
|
Sunday 22nd Feb |
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 | |
|
Monday 23rd Feb |
0930 | Attend CF team meeting | At SGH. Arrive no later than 0915. |
| 1030 | Bronchoscopy | ||
| 1100 | Meet adult CF team | ||
| 1130 | CF Ward round | ||
| 1400-1600 | CF Clinic | Annual reviews | |
|
Tuesday 24th Feb |
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 | |
|
Wednesday 25th Feb |
0930-10.30 | CF team meeting | |
| 11 am | Meet Julie Argent Radiologist – CF x-rays | ||
| 1130-1230 | Child Health Grand Round | ||
|
Thursday 26th Feb |
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 | |
|
Friday 27th Feb |
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