Question to the Department of Health and Social Care:

To ask the Secretary of State for Health, what recent assessment he has made of the effectiveness of the diagnosis and treatment of motor neurone disease.

Motor neurone disease (MND) is a rare incurable neurodegenerative condition and there are estimated to be up to 5,000 people with MND in the United Kingdom. In its early stages the disease can be difficult to diagnose because the symptoms a patient may present with, such as fatigue, clumsiness and muscle weakness are shared with more common, less serious conditions. No two people with MND will be affected in exactly the same way and there is no one test to diagnose the condition.

To support general practitioners (GPs) to spot the potential symptoms of MND, the Royal College of General Practitioners (RCGPs) and the MND Association have worked together to produce a ‘Red Flag Tool’ which sets out key signs of MND to help GPs to identify suspected cases and refer them promptly to a neurologist for appropriate investigation. The RCGP and British Medical Journal have also both produced MND e-learning courses which together cover both signs and symptoms as well disease management.

All services for people with MND should be commissioned as a specialised service in line with NHS England’s neurosciences service specification. This sets out what providers must have in place to deliver high quality specialised neurological care.

Specialist MND care can include a range of services such as counselling and emotional support, respiratory care, speech and language therapy, physiotherapy, respiratory secretion management, neurorehabilitation, physiotherapy and palliative care. Drugs can be used for symptom management, but riluzole is the only pharmacological drug licensed in the UK to slow the progression of MND.

Finally, the Department has asked the National Institute for Health and Care Excellence to produce a clinical guideline on MND. Development is currently underway and the guideline is anticipated for publication in February 2016.