The condition

• MND is a rapidly progressive, fatal disease.
• The cause of MND is unknown and there is no cure.
• Most people diagnosed with the disease are over 40, with the highest incidence occuring between the ages of 50 and 70.
• 50% of all people die within 14 months of diagnosis.
• MND is characterised by progressive muscle wasting and weakness, with the muscles affected varying in every individual. Symptoms can include loss of limb function, leaving people unable to walk or use their hands and arms, loss of speech and swallowing, inability to breathe and some people may experience cognitive change.

Incidence and prevalence

The incidence of MND is approximately two per 100,000 which suggests that there may be 100 new cases of MND diagnosed each year in Yorkshire and Humberside. The prevalence of MND is approximately seven per 100,000, suggesting there are 350 people currently living with MND in Yorkshire and Humberside.

The impact on health and social care services

Over the course of the disease, people with MND are likely to require input not only from the core team of health and social care professionals, but also from:

• Gastro-enterology/endoscopy team
• Respiratory team
• Specialist palliative care team
• Paid carers – for direct care and also for carer respite

Multiple items of specialist equipment are likely to be required (eg specialised wheelchairs, non-invasive ventilators, suction machines, environmental controls, communication aids, etc). In the latter stages funding is required from Continuing Healthcare Budgets.