In 1846 in the small Lithuanian town of Birstonas, the therapeutic properties of the local mineral waters were officially confirmed.  In April 2012, a group of 100 physiotherapists, haematologists and patients gathered at this picturesque location.  But they were not here for a relaxing spa weekend – instead, they had come to attend the first symposium held by the NNHF Lithuania project team.

Organised by Reda and Egidjius of the Lithuanian Patient Association together with haematologist Dr Sonata Trakymiene, the focus of the event was how physiotherapy can be used to benefit patients with haemophilia. Some aspects of haemophilia care in Lithuania are generally at a good level, however, physiotherapy is yet to become a standard part of the multi-disciplinary care offered to patients.  “One important issue is that there is a lack of awareness of the benefits of physiotherapy amongst people with haemophilia, and therefore a lack of motivation to participate in it”, says Dr Trakymiene.

To help address this, three international experts – Prof Adly Sabbour, Piet de Kleijn, Natasa Jankovic and  from Egypt, the Netherlands and Serbia respectively – together with Dr Sonata (pictured left), led a mix of theoretical and practical sessions at the event.

They were joined by two physiotherapists, Viktorija and Veslava, and one psychologist, Brigita, from Lithuania, who had recently returned from training in Canada funded as part of the NNHF project.

At the beginning of the session Augustas, a member of the patient association said, “I am looking forward to learning more about taking a progressive approach to sport – I don’t want to start doing something too difficult straightaway then fail and become demotivated.  My motivation comes from wanting to get fit, and based on the physiotherapy sessions I’ve had so far, knowing I will feel better afterwards.”

During the three day session, delegates were introduced to haemophilia and learnt about synovitis, arthropathy and methods of treatment and evaluation.  In addition to the practicalities of treatment, the sessions also emphasised that the approach to haemophilia care is key: “To ensure the physiotherapy concept is a success you firstly need a haematologist with an awareness of physiotherapy, you need good collaboration, and you need physiotherapists who have knowledge of their own country” explains Piet.

On the importance of collaboration, Prof Adly adds, “Good haemophilia care is down to whole team efforts – and that means the patients and their families, the haematologists and the physiotherapists.  Identifying a problem means talking to the patient and getting to know them.  To make a functional assessment we shouldn’t just look at each joint in isolation, but at how the body is functioning as a whole.  It is only then that we can identify the cause of any problems, and in doing so find a solution.”  This is why a key recommendation is to involve everyone in the assessment – including the parents of patients, as they can be best placed to discover any changes in the joints simply by observing how their children walk and play.

These concepts were put into practice during the practical sessions.  In their role as supervisors, the three experts took a step back, allowing participants to get hands on experience of carrying out assessments.  Keen to provide guidance whilst not over-supporting, they wanted the participants to get a sense of a real life assessment scenario.  One physiotherapist asked Natasa for additional support during the session, saying “You are the expert” to which Natasa replied, “But you will become the expert.”

The notion that local physiotherapists need to take control of providing haemophilia care in their own countries is key – local knowledge is vital when providing appropriate care.  It is for that reason that the Lithuania project aims to develop a train-the-trainer concept, so that local physiotherapists such as Viktorija and Veslava can pass on their learning to their counterparts, thus leading to sustainable care in their regions.

With the knowledge gained through the training in Canada, and from Piet, Natasa and Prof Adly, the project team is now planning two more symposia to train more physiotherapists.  In addition, they are developing educational materials for patients and people with haemophilia, “We are currently developing brochures for  people with haemophilia and physiotherapists and a film showing patients what physiotherapy they can do themselves at home” says Egidijus, president of the haemophilia association.  “In addition we are developing a web-based portal so that physiotherapists and people with haemophilia can communicate with each other, and use it as a source of information” continues his wife and fellow patient association member Reda (pictured left with NNHF Project Manager Denise Ineichen).