Respiratory functional assessments should be performed as part of the initial assessment of MND patients as quickly as possible post diagnosis as well as regular 2-monthly reviews according to the new NICE guidance. This will hopefully fit in with an accurate time frame of deterioration to ensure all ‘current’ care needs are met timely and accurately and should ensure advance care planning is taking place.
Motor neurone disease (MND) is a progressive disease that affects (and progressively deteriorates) the motor neurones in the brain and spinal cord which leads to weakness and wasting. There are around 4,000 individuals with motor neurone disease in the United Kingdom and tragically most die within 2–3 years of developing symptoms with the most common type of MND is amyotrophic lateral sclerosis (ALS).
A survey of 919 of the 4,000 individuals has taken place to assess the impact and response of these guidelines and overall effects have been positive. The results are as follows:
- Awareness of MND: More people have heard of MND at the time of diagnosis.
- Diagnosis: The diagnosis experience itself has improved. More people are having tests explained to them, the opportunity to ask questions and to receive the diagnosis in a private place.
- Care: An increased number of people have a named person co-ordinating their care.
- Regular monitoring of breathing: More people are having their breathing regularly monitored with increased access to both non-invasive ventilation and machines, including ‘cough assist’.
Have you read the guidelines? What do you think? Leave your comments below.