Around two people in every 100,000 of the general population will develop MND each year. Therefore, GPs and others in the primary care team may come across few people living with MND during their professional lifetimes.
The pattern, speed of onset and development of symptoms can be difficult to monitor in the primary care record causing delays in referral, diagnosis, and treatment.
The MND Association and the Royal College of General Practitioners (RCGP) collaborated to produce a 'Red Flag' tool for MND which is designed to prompt GPs to look for additional symptoms and improve timely referrals to neurology and therefore speed up the time to accurate diagnosis. Research using the QResearch database has also demonstrated that key elements of the tool can be independently predictive of subsequent MND diagnosis by neurology specialists.
Working in association with the Motor Neurone Disease Association, PRIMIS has developed a real time GP clinical system alert that will be triggered if clinical terms entered during consultation are considered indicative of MND when relevant terms pre-exist in the patient record. The alert will provide a template and further information to help steer the consultation to enable a suspected MND referral decision to be made.
The GP and primary care team can be pivotal to the person with MND maintaining a dignified quality of life throughout the course of the disease. Therefore, in addition to a timely referral for diagnosis it is anticipated that the MND tools provided by PRIMIS may also contribute towards the monitoring of disease progression of this patient group.
Given the rarity of MND the number of alerts triggered is expected to be low. Therefore, during the initial pilot phase the trigger criteria and patient journey to referral will be regularly monitored and adjusted to be as supportive and accurate as possible.
PRIMIS will soon be recruiting practices into a pilot. If you would like to find out more, please register your interestvia our online form and we will be in touch when we have more information:
Register interest for the pilot study
Please find all references (and links) relevant to MND in the Publications page.
This project involves the following PRIMIS services:
Applied Health Research Building
University of Nottingham
Nottingham, NG7 2RD
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