Second CHI visit November 2015

Dr Mary Carroll with nurse Tes Hodson, dietitian Clare Pearson and physiotherapist Emma Holland visited Sismanoglio Hospital in Athens to see selected patients and discuss medical cases  with the Athens MDT. This was much appreciated and all wish a return visit as soon as it can be arranged.

2 day visit to Sismanoglio hospital

First CHI visit April 2014 Dr Mary Carroll, Director CF Southampton Adult Service, Dr Valia Kechagia CF Clinical fellow, Mrs Tes Hodson CF nurse specialist, Mr Rod Halls, CHI representative, made a 2 day visit to Sismanoglio hospital in April 2014. Day one comprised of a visit to the Athens department, a 15-bedded ward to meet the staff and patients. Day two comprised a presentation to the patients, invited by the Hellenic Cystic Fibrosis Association, and staff of Sismanoglio hospital. Follow up Subsequently 2 Greek physiotherapists and the newly appointed director of the Athens service, Dr Diamantea and the head nurse Mrs Anna Tazarni have visited Southampton adult centre. In addition Dr Carroll has visited Athens on 3 further occasions with members of the Southampton Adult Multidisciplinary team to talk at Conferences and to see Greek patients, all organised by the Greek patients. [Financed by funds raised in memory of Dr Kechagia.]

CF patients request help from CHI

  In 2013, two Greek CF patients contacted a member of CHI at an international CF meeting to ask for help in improving the Athens adult CF service. Subsequently both patients visited the Adult CF centre in Southampton and were able to observe a working day in the department. The patients were particularly keen on improving their access to a trained CF physiotherapist. At Southampton we were fortunate in having a Greek Doctor as a member of our team, Dr Valia Kechagia. She was able to translate and make subsequent contact with the Athens service. With the financial help and planning from CHI, members of the Southampton Adult CF team were invited to visit the Athens CF service and to speak to a group of CF patients about CF care.

Medical team visit Varna

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…

Medical team visit Sophia

Dr. Julian Legg and Adrian Gamble visited Sofia from 27-29 November 2014 for a short series of meetings with the principal representatives of the medical and parent groups who lead the CF effort in Bulgaria.  This was primarily a fact-finding trip and, while it was several months in gestation, it ultimately proved worthwhile. It was facilitated and almost entirely funded by Abbott who arranged travel, accommodation and logistical support for all attendees. Summary Positive initial meetings and atmospherics suggest the situation in Bulgaria lends itself to support from CHI; one of the most promising first trips Julian has been on. The conference was very well attended and the Bulgarian CF community appears comparatively well joined up. We agreed several areas where our support would be useful. The most probable next step is for CHI to return in the summer with a multi-disciplinary team. Abbott organised all the logistics, paid for practically everything and everyone, and pledged ongoing commitment to the initiative. We achieved our principal aim of establishing direct contact with the key people and explaining to them the role CHI can play. Others have been before us and failed to deliver; we will need to deliver to gain full trust CHI-Bulgaria conference, 28 November After initial introductions Adrian and Julian gave short presentations on the background to CHI and its approach to the treatment of CF. This was followed by a presentation in English from Prof. Galeva, the senior medical representative at the conference, on the treatment of CF…

Strategy planning in Bulgaria

Following an exploratory visit to Bulgaria, Dr Julian Legg concluded that the most useful improvement in the treatment of CF in the country at the present time would be the development of a register of CF patients. He arranged to meet Dr Lutz Naehrlich, Director of the European Cystic Fibrosis Society Patient Registry at a CF Europe conference in Sofia. The outcome is a plan to hold a two-day conference, probably in Varna, to establish a National Patient Register. The conference will be attended by representatives from all four CF centres in Bulgaria. It will be part funded by Abbott Laboratories and will be facilitated by our team from Southampton Children’s Hospital.