A four-person team visited the CF centre in Varna in March 2015 and spent 3 days with members of the Bulgarian team who demonstrated great enthusiasm for working with CHI. The visit was extremely useful and enabled the creation of a strategic plan for future work. The CHI team comprised Dr. Julian Legg, Victoria Keenan (Senior Physiotherapist, Southampton Children’s Hospital), Sian Phillips (Senior Dietician, Southampton Children’s Hospital) and Adrian Gamble (Project manager).
Observations from the visiting CHI team
- Overall, a strong cohesive cystic fibrosis team which will facilitate changes and improvements.
- Many of the important service components are available in Bulgaria.
- There needs to be a structured, all-inclusive approach to each patient that assesses all aspects of care (consider introducing an annual review process).
- A more aggressive approach to nutrition would be helpful with an emphasis on achieving a BMI above the 50th centile for age. Southampton team to share A4 sized diet sheets with the Varna team. AquaADEK has the brand recognition for vitamin supplementation but other, cheaper combinations would do the job.
- Physiotherapy: an ongoing issue. Need to establish age appropriate routines; suggestion of a list of vetted web sites / videos.
- MDT: there is no formal MDT although patients are discussed at meetings attended by multiple doctors. Could they move to our team based model?
- Database: there is a web-based option to leverage the ECFS database however there are internal hurdles to this solution and consequently JL suggested that the Varna team work up a simple Excel database to cover the key information.
- Sweat Test: JL and the team had been struck by reports of different techniques and inconsistent findings; the Varna team said they have no confidence in its use in Bulgaria.
- Creon: being under-used and not taken with all meals / shakes; a widespread belief in the 10,000 unit per kg per day upper limit; prescribed by respiratory doctors who speak to that limit, above which parents have to pay.
- The other CF centres in Bulgaria: we understand that they don’t have the teams in place and Varna find it hard to communicate with them.
- We will access the National parents association via the Varna team.
The Bulgarian team have written to say they were very satisfied with the visit and also with the TV and media coverage which it generated. They also told us that the patients and families we saw were very happy and had found the meeting useful.
Abbott Bulgaria generously paid for our flights and accommodation. The trip consequently cost CHI no more than incidental expenses.