Introduction Attitudes to surveillance for and treatment of ventilatory failure among people with MND have changed over several years. In the UK this culminated in the publication in July 2010 of National Institute of Clinical Excellence (NICE) guidance designed to increase access to non-invasive ventilation (NIV). The services offered in our respiratory unit have evolved on the basis of published evidence in advance of formal guidelines. We examined the impact of compliance with practice parameter recommendations in NICE to our referral numbers and uptake of NIV in East Anglia.
Methods A retrospective review of number of referrals and new NIV starters from 1984 to 2010 in a regional respiratory support unit. Between 2001 and 2005 the MND Association helped to establish a care centre in Cambridge and closer working was established with the respiratory service. From 2006 the default position was to offer all patients newly diagnosed with MND a respiratory assessment and structured 3 monthly follow-up appointments in a fashion subsequently detailed in the NICE guidance.
Results The numbers of new referrals and people starting NIV are shown in Abstract P271 figure 1. Between 1984 and 2000 there was slow growth but the mean annual values were just seven referrals and four new NIV starters (57%). With closer working between neurologists in the care centre and the respiratory unit between 2001 and 2005 mean referral numbers increased to 31 with 17 new NIV starters (55%) per year. With default referral and 3 monthly reviews the number referred grew to 44 with around 31 NIV starters per year (70%).
Conclusion With an estimated population of 2.5 million in East Anglia, and an annual incidence of 2.8 per 100 000 we estimate 70 new cases of MND per year. Around 60% of patients are therefore being referred and 70% of these are starting NIV. Implementing the NICE guidance could have a similar impact across the UK, a great improvement on the position in 2000 when only around 3% of patients were being offered NIV.1