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We read with interest the review by Polkeyet al 1 pointing out the need to use all means possible to enable patients with motor neurone disease to achieve the best quality of life.
The authors state that, in order to maintain 24 hour ventilatory support, nasal ventilation must be complemented with alternative strategies during the day that are not suitable for widespread use in district general hospitals. We consider that it is possible to maintain 24 hour non-invasive ventilation in patients with motor neurone disease if nasal ventilation is combined with other non-invasive techniques such as mouth piece ventilation or a pneumobelt, and with manual or mechanical expiratory muscle aids to clear secretions in those patients whose weakness makes spontaneous coughing ineffective.2 It is important to provide these techniques because they can delay tracheostomy and additional problems in most patients with motor neurone disease and are the only way for those patients who reject tracheostomy but not ventilatory support. However, we are in agreement with Polkey et al that this treatment must be performed by trained staff in respiratory care units. Moreover, these units are the best place to prevent respiratory morbidity and mortality, to enhance cooperation between patients, relatives and caregivers, and to manage clinical and psychological problems during the terminal phase of the disease.
In our experience the care of patients with motor neurone disease outside respiratory care units needs to be improved. These patients must not be negatively discriminated against compared with other chronic patients receiving even more expensive but socially accepted treatment. We must therefore try to ensure that all patients with motor neurone disease have access to management in a respiratory care unit in order to receive standardised quality care both in hospital and at home.
author's reply We thank Dr Servera and colleagues for their interest in our paper. We agree that patients with motor neurone disease should have access to specialist expertise where this is necessary. However, we are also conscious that travel can be difficult for some patients with advanced disease and our experience is that, in many cases, satisfactory palliation can be achieved using non-invasive positive pressure ventilation alone. This treatment could theoretically be provided by an interested chest physician working in a district general hospital. We recognise that, in practice, it may be difficult to identify the necessary resources and that, conversely, an under-resourced service may lead to suboptimal care; however, this is true both of district hospitals and specialist centres.
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