Motor Neurone Disease

Department of Health written question – answered on 27th April 2016.

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Photo of Rebecca Long-Bailey Rebecca Long-Bailey Shadow Minister (Treasury), Member, Labour Party National Executive Committee

To ask the Secretary of State for Health, what steps his Department is taking to increase funding for motor neurone disease (a) research treatment and (b) patient care.

Photo of Rebecca Long-Bailey Rebecca Long-Bailey Shadow Minister (Treasury), Member, Labour Party National Executive Committee

To ask the Secretary of State for Health, what steps his Department is taking to help ensure the earliest possible diagnosis of motor neurone disease.

Photo of Rebecca Long-Bailey Rebecca Long-Bailey Shadow Minister (Treasury), Member, Labour Party National Executive Committee

To ask the Secretary of State for Health, what provision there is for people with motor neurone disease to access the drug Riluzole; and how soon after diagnosis people with that condition are able to access that drug.

Photo of Jane Ellison Jane Ellison The Parliamentary Under-Secretary of State for Health

On 24 February 2016, the National Institute for Health and Care Excellence (NICE) published a new guideline on the assessment and management of motor neurone disease (MND). The guideline sets out the signs and symptoms of the disease and recommends that robust protocols and pathways are in place to inform healthcare professionals about MND and how it may present and to inform healthcare professionals in all settings about local referral arrangements. NICE is clear that patients suspected of having MND should be referred without delay. The guideline can be found at the following link:

www.nice.org.uk/guidance/ng42/resources/motor-neurone-disease-assessment-and-management-1837449470149

To support general practitioners (GPs) to spot the potential symptoms of MND, the Royal College of General Practitioners (RCGP) 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 as disease management.

Riluzole is the only drug licensed in the United Kingdom to slow the progression of MND. In 2001, NICE recommended that Riluzole should be available for the treatment of individuals with the amyotrophic lateral sclerosis (ALS) form of the disease within its licensed indications, which are to extend life or the time to mechanical ventilation for individuals with ALS. The National Health Service is legally obliged to fund and resource medicines and treatments recommended by NICE's technology appraisals. Decisions regarding the initiation of Riluzole therapy are a matter for individual clinicians in discussion with their patients.

The usual practice of the Department's National Institute for Health Research (NIHR) is not to ring-fence funds for expenditure on particular topics: research proposals in all areas compete for the funding available. The NIHR welcomes funding applications for research into any aspect of human health, including MND. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality. Current NIHR awards include a £0.3 million doctoral research fellowship looking at the use of telehealth in MND.

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