1. Improving health care and social services for patients with Neuro- muscular diseases in the Southeast healthcare region in Sweden Rebecka Pestoff*, Department of Clinical Pathology and Clinical Genetics ƚ, Charlotte Lilja, Department of Paediatrics ƚ, Olof Danielsson, Department of Neurology ƚ, Cecilia Gunnarsson, Department of Clinical Pathology and Clinical Genetics ƚ ƚ Department of Clinical and Experimental Medicine, Linköping University, Linköping, Sweden Contact information: rebecka.pestoff@lio.se charlotte.lilja@lio.serebecka.pestoff@lio.secharlotte.lilja@lio.se Regional Project of Rare Diseases, Linköping University Hospital, Linköping, Sweden Shifting adherence to international guidelines as well as several bottlenecks were identified at most clinics in the care of NMD patients. The main issues being long lead times and coordination as shown in red in Figure 1. Identified issues: Long waiting times - to see a general practitioner - for referrals to specialists - for testing and for test results - until diagnosis is made Coordination of care for patients - many different clinic visits - lack of communication between caregivers - lack of communication between medical care and social services - different City Council organisation within the same region Identified reasons: Understaffing Lack of expertise Lack of knowledge amongst caregivers of where to turn for help. Proposed solutions: Creating a regional Centre for Rare Diseases (CSD) - Administrative and organisational role - CSD to offer support and help to the general public, social services, primary and specialist health care providers and patients. - Multidisciplinary medical expert teams liaise with CSD - One coordinator leading each expert team Uniform steering in the City Councils to ease regional collaborations Improve the structure for paramedic care (adults) The project found that The National Insurance Office already have started their work in this area and are interested in initiating collaborations with a future CSD to further improve the health care pathways for patients. The work to improve health care pathways for patients with rare diseases has started in most of Sweden´s seven healthcare regions. Each region has a different polito-administrational organization, comprising of 1-7 county councils, and differing geographic and demographic realities. This is a presentation from the Southeast Healthcare region (Sydöstra sjukvårdsregionen), where a pilot project was initiated in 2013, to survey the current situation and make an organisational suggestion. This poster shows the main findings and conclusions one year into the project. The project was initially funded for two years to map the health care pathways for patients with neuromuscular diseases (NMD) and to suggest a organisational structure for a regional Centre for Rare Diseases. Introduction Method Fifty paramedical staff working with NMD patients at 10 different clinics at hospitals in the region participated in semi-structured interviews. General themes were identified from the material and summarized as a flow chart of the patient’s health care pathway when it comes to rare diseases. Collaborations with the National Role of Rare Diseases and Association of Rare Diseases were also initiated. Results Conclusions Figure 1: Flowchart showing the patient’s health care pathway from initial health problem to diagnosis and follow-up. The blue shapes symbolise the pathway for the patient and the red shapes symbolise identified issues. CSD management OTHER HEALTH CARE Politicians Long waiting times for patients with Neuromuscular Diseases Unequal and sometimes poor quality of care for patients with rare diseases within the same region, due to local differences Multidisciplinary care planning of both health care and social services necessary CSD and coordinators can support better health care pathways Introduction of an NMD expert team (pilot team) to be applied to other rare disease groups in the future. Figure 2: A possible organisational structure for the regional Centre for Rare Diseases (CSD).