Motor Neurone Disease (Research)

David Amess Excerpts

Monday 12th July 2021 Westminster Hall

[Sir David Amess (Southend West) (Con)]

I congratulate the hon. Member for Linlithgow and East Falkirk (Martyn Day) on the way he introduced the debate—I agreed with all his points. I do not have the expertise of the hon. Member for York Central (Rachael Maskell) in this area, but I wish to make a number of points, mainly on behalf of a friend of mine.

The National Institute for Health and Care Excellence says that most people with the disease will die within two to three years of developing symptoms, as we have already heard, with only 25% alive after five years and just 10% after 10 years. I certainly appreciate that, in the light of the global coronavirus pandemic, the Minister has many calls on her time. Of course, many of these illnesses existed before the pandemic and still do now, and they have to be dealt with.

A local Southend guesthouse owner who happens to be a friend of mine had to work 12 hours a day to recover financially from the first lockdown but developed problems with his left hand and leg. Physiotherapy did not help, and pain spread to the entire left-hand side of his body. An appointment was made with a neurologist, and it was revealed that he had motor neurone disease and had only two to four years to live. He is no longer able to work and is having difficulties obtaining financial support.

That upsetting story about my friend is, unfortunately, replicated throughout the country. Relevant up-to-date information about symptoms and how to check for motor neurone disease should, I believe, be widely accessible and discussed in hospitals with relevant communities to raise awareness of the disease.

Furthermore, people living with terminal illness often die before they get the benefits that they need, which is ridiculous. I am very pleased that the Government have announced that they will reform the benefits system for terminally ill people. I hope that is done as a matter of urgency so that patients and their families do not have to spend their valuable time battling for financial support.

The best way to treat a disease and to find a cure is to fully understand it, so as we have already heard, specific research targeted at motor neurone disease, not just general neurological conditions, is very much needed. Increasing Government funding from less than £5 million annually to £50 million annually over five years—I know that is a lot of money—would not only help to fund a new research institute, but help us to discover effective treatments and save the Government in healthcare, social care and benefits in the long run.

If we pioneer the way in motor neurone disease research, it would truly put our country on the map again, at the forefront of international scientific and medical discovery. I was delighted to sign the letter from my hon. Friend the Member for Northampton South (Andrew Lewer) to the Minister, in which he asked for more investment from the Government in specific motor neurone disease research. That is much needed and would benefit neurovegetative diseases such as the dementias.

At business questions recently, I asked the Leader of the House to find time for a debate on research into motor neurone disease. In his answer, I was told that our 2019 manifesto

“committed to doubling funding for dementia and neurodegenerative disease research”.—[Official Report, 22 April 2021; Vol. 692, c. 1150.]

I hope that that is done urgently and that research into motor neurone disease receives its fair share.

In conclusion, one in 300 people will develop motor neurone disease in their lifetime and there is currently no cure. That is not a small percentage of our population. We need more investment, and I hope that the Minister will commit to it.