ELF Reception, 27 September 2011

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During the ERS Amsterdam Congress, patient organisations were invited to an ELF Reception, which was an informal opportunity for them to meet and discuss potential collaborations with other patient organisations, how to influence the future ERS agenda and meet the ERS leadership.

Some of the patient organisations gave presentations about the work that they are currently carrying out in their individual countries and explained how these projects may be useful to other European organisations.

The presentations can be downloaded below for further information.

1. Romanian TB Patients’ Association (ARB-TB)

During the ELF Reception at this year’s ERS Congress, we had the chance to initiate a debate regarding one of our ongoing projects – “Living together, breathing together”, which is an educational project of multidisciplinary care, related to the ACSM & IEK activities (WHO Stop TB Partnership). It involves TB patients supporting groups (education between peers) and advisory experts (from pneumology, psychology, sociology, anthropology, biology, social sciences, pharmaco-economy). The idea of this project came to us due to the fact that Romania has the highest incidence of TB, MDR-TB and TB-HIV co-infection across all the European Union countries, and because we believe that through the migration phenomenon, TB can affect even the countries with a low incidence rate. Therefore, we hope that countries of the European Union will address TB more as a global problem rather than a national one.

2. Lovexair Foundation
The project is working to develop a viable model for chronic disease management, in an attempt to overcome high healthcare costs and productivity issues. The model should also be easily reproduced for other conditions in other countries. The project aims to create an ongoing personalised education programme for patients and carers, to include: physical exercise, educational materials and workshops. The programme will be delivered through a trained educator network either in small groups or on a one-to-one basis. The development of an e-health platform will allow patient progress to be monitored and evaluated to enable personalised therapies to be developed in the future.


3. Apneuverening

The Dutch Sleep Apnoea Association is the first patient organisation to classify sleep centres and award those with the best performance. In September 2011, 41 out of 78 sleep centres in Holland received 1 to 5 Stars and these were awarded by patients with obstructive sleep apnoea syndrome.

The research, which has been carried out since 2004, has asked sleep apnoea patients how ill they feel, whether they experience any co-morbidity, how long it lasted before going to the doctors, if they got the right referral, how they rated their assessment at the sleep centre, did they get enough information and guidance on using CPAP, what CPAP and mask were they were given to use, do they use it every night, all night etc. The study shows that sleep centres are very eager to receive our star rating. The importance of our findings on patient experience is boosted because the insurance companies take our information into consideration when contracting sleep centres and CPAP delivering companies, which has strengthened the position of our patient organisation.


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