ESA: People with Motor Neurone Disease
Debate between Drew Hendry and Stephen Twigg(6 years, 5 months ago)
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Stephen Twigg
I absolutely concur and echo what my hon. Friend says. Local campaigning efforts—as well as the local support, fundraising and opportunities to meet—are what the MNDA and MND campaigns do so well. That local voice is absolutely crucial.
Motor neurone disease is the umbrella term for several neurodegenerative disorders that selectively affect motor neurones. Motor neurones are the voluntary muscles that control processes such as walking, talking and breathing. Eventually, the muscles become so weak that the patient loses even the most basic of motor functions, such as the ability to walk, eat or breathe unaided.
Unfortunately, little is known about what causes MND. We know that it affects about one in 100,000 people, and we know that, in about 90% of cases, the cause is completely unknown. There is also no known cure. The average life expectancy following diagnosis is between two and four years, although we know that around one in 10 go on to live for 10 years or more. Most patients eventually pass away as a result of respiratory failure.
In 2016, the ice bucket challenge became a viral sensation, with many celebrities, sports stars and even politicians throwing ice-cold water over themselves to raise awareness of MND. It was a global campaign and raised in excess of $100 million for support and research into the causes of, and potential cures for, MND. It was so successful that the additional funding helped scientists at the Massachusetts Institute of Technology in the United States to uncover a new gene that they believe may well be the cause of MND. Although we are still far from a cure, we are—hopefully—getting closer.
Drew Hendry (Inverness, Nairn, Badenoch and Strathspey) (SNP)
The hon. Gentleman is making a powerful and important speech. He mentions that MND is a terminal disease. Scotland has replaced the arbitrary definition of “terminally ill” as being likely to die within six months with the clinical judgment of a medical practitioner that someone has a terminal illness. Does he agree that that is a far more sensible way to proceed, and will give dignity to people with MND?
Stephen Twigg
I was not aware of that change in Scotland, which sounds an excellent way of addressing the issues I will come on to. I will also set out suggestions from the MNDA regarding Department for Work and Pensions policy.