In the UK there are 8000 who live with CF. As a result of advances in therapy and developments within the NHS, strongly supported and encouraged by the Cystic Fibrosis Trust, the quality of life and outlook for sufferers has improved enormously over the last 20 years. Average life expectancy is now over 31 and rising, with much resource and effort going into research and alternative therapies.
The population of Lithuania is 3.3 million, with 100 CF patients identified – a figure, which obviously underestimates the real number by at least 100%. It is uncommon for sufferers to live long into adulthood. Resources are limited and there is no equivalent of the CF Trust or any charitable support for children or parents.
Against this background, in February 2008, CHI organised a visit by a team from Vilnius to Professor Andy Bush and his colleagues at the Royal Brompton Hospital, London. Building on contacts developed by CHI in a visit to Lithuania in March 2006, the exchange followed the model used successfully on previous occasions with other ex Soviet bloc countries. The aim – to give the team a first hand opportunity to see and learn from good practice in UK at an acknowledged centre of excellence in the treatment of CF.
CHI’s role was to organise the visit and programme and then ensure ongoing support back in Lithuania as people on the ground there work to implement improvements.
The visitors from Lithuania included Professor Sigitas Dumcius from Vilnius, two medical colleagues and Mrs Vilma Narkuniene, the mother of a two year old daughter with CF. They had a busy week observing and discussing inpatient and outpatient care (including hands-on experience for the clinicians), with professionals, patients and parents, and attending clinical review meetings; and one day was spent at the Bromley HQ of the powerful and influential Cystic Fibrosis Trust. The full schedule is available here.
The Team was especially impressed by the extent of the integration in the RBH approach, almost entirely absent in their own service, and the relaxed and informal atmosphere it produced in the relationship with patients and parents. The approach embraces specialist doctors, nurses, physiotherapists, social workers, dieticians, psychologists, domiciliary care and management support, all working closely with the patient and thereby ensuring a comprehensive, joined up system of care; and, importantly, facilitating the critical transition from paediatric to adult treatment.
They were struck by the richness of potential treatment regimes, with a wide array of antibiotic and enzyme therapies, contemporary physiotherapy, nutrition and so on. In Lithuania there are problems in securing full funding for such services especially during the transitional period as patients become adult.
The team were able to take copies of the RBH Clinical Guidelines (Care of children with Cystic Fibrosis 4th Edition 2007) to enable them to develop their own systems.
Championing the cause
The visit to the Cystic Fibrosis Trust (CFT) proved to be a rich source of information and inspiration, especially in how to create an effective mix of information, publicity, and political profile. CFT offered assistance with the production and translation of information, and to share a clinical database, which would enable comparison with outcomes in other countries.
There is no organisation in Lithuania such as CFT, but there is a desire among parents of CF children to organise themselves and bring pressure to bear to secure improvements. CHI is keen to help in this process.
A detailed report of the visit, prepared by CHI and the Lithuanian team, is available (in pdf form), and schedule here. This highlights the benefits of integration, the need for specialist physiotherapy (a physiotherapist will be coming for specialist training at the Brompton in September 2008), the desire to develop parent support facilities and ways of using comparative information to improve care and raise the public profile. Professor Bush is keen to develop a twinning arrangement and is visiting Vilnius in mid April 2008.
CHI’s role is to facilitate and support these processes. The differences and difficulties are considerable but February’s visit, costing a few hundred pounds to organise, has demonstrated how productive such an approach can be. CHI will be working with all concerned to ensure progress on the actions identified and a further review will be undertaken mid 2008.
This visit resulted in two smaller follow-on visits.
Ieva Domarkaite, a physiotherapist at the Vilnius University Hospital came to UK in September. She spent two weeks at the Royal Brompton Hospital (RBH), London and almost all the costs were covered by a EuroCare CF grant. She spent the first week on a course Managing the Care of Children and Adults with Cystic Fibrosis which provides specialist training to Level 3 accreditation and approved by the Chartered Society of Physiotherapists. During the second week, she shadowed Nicola Collins, a paediatric CF specialist physiotherapist.
Another consequence of the Lithuanian visit to UK was the re-establishment of a Lithuanian CF Parents’ Association with Vilma Narkuniene as the newly appointed President. In November 2008, CHI’s project manager, Rod Halls, went to Vilnius to explore how CHI might best continue its collaboration. The focus was ways in which CHI might support the Parents’ Association, to understand better the local conditions not just in Vilnius but in Lithuania as a whole. We also wanted to progress an idea that CHI, with Solvay support, might organise a Baltic States CF workshop. Lastly, we wanted to review progress in identifying a doctor to specialise in dietary advice so that he/she might attend the EuroCareCF at RBH in April 09.
For various reasons on both sides, we were not able to make much progress in the next couple of years. However, the interaction restarted seriously in 2011 with a CHI visit to Lithuania reported here.