ESA: People with Motor Neurone Disease

Nick Thomas-Symonds Excerpts

Wednesday 11th July 2018 Westminster Hall

[Stephen Twigg (Liverpool, West Derby) (Lab/Co-op)]

I beg to move,

That this House has considered employment support allowance for people with motor neurone disease.

It is a great pleasure to serve under your chairmanship, Mr Owen. I begin by congratulating the Minister on his return to the Department this week. I look forward to his response to my speech. I also thank the campaigners who have pressed the Government so hard to scrap all employment and support allowance reassessments for people living with motor neurone disease. They have been in Westminster on several occasions over the past six months. I first met them in February, outside the House in Parliament square, after they had braved the beast from the east and were covered head-to-toe in snow.

I particularly thank Sandra Smith, who is in the Gallery. She is a tireless voice for people with MND and has campaigned hard on the important issue of access to benefits. I also pay tribute to the Motor Neurone Disease Association, which does a fantastic job of standing up for, and giving support to, people living with MND, their families and loved ones.

Today I remember my very good friend, Marge Carey. It was Marge who first encouraged me to get involved with the Merseyside branch of the MNDA, and I am proud to be patron of that branch. I am incredibly grateful to the branch’s committee and volunteers, who do so much to support people with MND and their families.

[Nick Thomas-Symonds (Torfaen) (Lab)]

I congratulate my hon. Friend on securing the debate. I join him in thanking the campaigners, because the employment and support allowance application and reassessment systems just are not suitable for people with motor neurone disease. Will he join me in congratulating those who campaign locally? Torfaen lost its former mayor, Doug Davies, to MND. His son Giles, also a councillor, has been doing great work with the local MNDA branch. That local campaigning complements national campaigning. Does he agree that it is important?

[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.