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TIMELINESS OF MOTOR NEURONE DISEASE CARE– DIAGNOSIS TO SERVICE ACCESS
  1. Priya Devi Shanmugarajah,
  2. Linda Tuttle,
  3. Agam Jung
  1. Leeds Centre for Neuroscience, Leeds Teaching Hospitals NHS Trust

Abstract

Background MND is a rapidly progressive incurable neurodegenerative condition. The unpredictable rate of deterioration poses challenges to timely seamless co-ordinated care delivery. We performed an audit mapping time intervals of the patient's journey at the Leeds MND Centre to inform local service development.

Objectives Evaluate the time period from symptom onset to referral, diagnosis and access to multidisciplinary services.

Method Retrospective medical records review for newly diagnosed patients between 2010–2012. Time intervals were compared with MNDA Standards of Care and King's MND pathway.

Results 33 case notes were analysed. Median symptom onset to neurology referral was 36 weeks. Diagnosis was confirmed within 5 weeks. Post diagnosis nurse specialist review was within 2 weeks; however MDT review and consultant follow-up did not meet standards.

Discussion This audit identified the lack of a standardised diagnostic and referral pathway. It resulted in significant service review and redesign. Measurement of specific time intervals can be a practical and relevant measure for assessing variation in quality of care. The limitations of a modest sample size and limited time frames can be overcome by a national prospective audit. This will identify delays in both diagnosis and multidisciplinary team access thus ensuring equitable provision of services for patients.

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