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SUDEP Action welcomes Neurological Alliance’s report on improving the quality of neurological data and intelligence


The Neurological Alliance has today published a new report and accompanying factsheet which reveal the economic and societal impact of neurological conditions and set out the steps needed to address the major gaps in neurological data and intelligence.   

Measuring up: improving the quality of neurological data and intelligence and Neuro Numbers, the Neurological Alliance’s new prevalence and statistics resource, unveil new figures showing that:

•    The number of neurological cases in England has now reached approximately 12.5 million – this equates to 59,000 cases per clinical commissioning group
•    1.3 million hospital admissions were recorded for people with a neurological diagnosis in 2012/13 – representing an increase of more than 500,000 over a five year period
•    The NHS spent over £4.4 billion on neurological conditions in 2012/13 alone
•    NHS expenditure on neurological conditions increased by over 200% between 2003/4 and 2012/13

Despite their huge impact, historically very little information has been collated and published about neurological conditions and how people affected by them are cared for and supported by the NHS and social care services. There has also been a poor understanding of their prevalence and economic and societal impact among decision-makers at the national and local level.  

Momentum behind better data collection and analysis has begun to grow however. Following the 2012 Public Accounts Committee (PAC) report on neurological conditions, which drew national attention to the dearth of neurological data and intelligence, and work that the Alliance has undertaken with Dr David Bateman, the National Clinical Director for Neurological Conditions, NHS England and the Health and Social Care Information Centre (HSCIC), the first neurological dataset was launched in March of this year. This brought together for the first time accessible neurology data from various sources within health and social care in to a single national and publically accessible resource. 

Whilst the publication of the dataset is a seminal step forward, it is only the beginning, with Measuring up forming a vital part of the neurological community’s campaign to push for the creation of a comprehensive system of neurological data and intelligence capture and analysis. With this in mind, the Alliance’s report:

•    addresses and reaffirms the rationale for improving the collection and quality of neurological data and intelligence;
•    sets out a roadmap for improving the wider collection and analysis of neurological data and intelligence, setting out clear short, medium and long-term goals.

SUDEP Action welcomes this latest report by the Neurological Alliance and support it ambitions; it will be an important tool in the months ahead in maintaining momentum towards delivering data parity for neurological conditions within the reformed health and social care landscape.