Résumé :
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Motor Neurone Disease (MND) is a progressive degenerative neurological disorder which is usually fatal within 2-3 years of diagnosis. The majority of deaths are as a result of respiratory failure and or respiratory tract infections. The Respiratory Support & Sleep Centre (RSSC) at Papworth Hospital has provided ventilatory support for patients with this condition on a sporadic basis for many years, either when patients present in ventilatory failure or to provide symptomatic relief and also occasionally to wean from invasive to non invasive ventilation. There is now increasing evidence to show benefits in terms of quality of life and survival to develop this service further. Numbers of patients referred to our unit has increased steadily over the last 15 years but since developing links with the regional MND unit at Addenbrookes Hospital in Cambridge in 2001 reflects an increase in numbers of referrals. In 2001 21 patients were referred and in subsequent years 29, 33, 36, 33 54, 49 and 54 in 2008. Whilst therapies to improve ventilation, cough augmentation and enteral feeding can be delivered in a hospital setting with relative ease it can prove challenging to manage in the community. This poster discusses how : • The numbers of patients being referred to the RSSC do not reflect number of MND patients within the region. • The MND service on the RSSC attempts to optimize patient care by offering frequent follow ups to avoid missing patients that may benefit from NIV. Flexibility between in-patient and day case assessment depending on patient preference. • Improving overall support for patients, relatives and community carers. With closer monitoring and improved data collection it is anticipated that a greater number of patients will benfit from NIV, Cough augmentation and timely intervention for dysphagia with improvements in quality of life and survival.
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