Motor Neurone Disease (Research)

Baroness Keeley Excerpts

Monday 12th July 2021 Westminster Hall

[Barbara Keeley (Worsley and Eccles South) (Lab) [V]]

I thank the Petitions Committee for arranging a debate on this important topic. We have seen during this pandemic the transformative impact that medical research can have. Whether by creating vaccines on a timescale that was previously thought impossible or identifying effective and low-cost treatments for people with covid-19, the research community has saved millions of lives around the world during this pandemic, but the level of investment related to covid-19 is not replicated for other conditions.

We are discussing motor neurone disease, which received only £3.5 million from the Medical Research Council in 2019-20 and no funding at all from the National Institute for Health Research. As we heard earlier, the Government have claimed that they invested £4 million over the last five years in MND research, but as the MND Association found, much of that was spent on general neurological research rather than MND-specific programmes. For a condition that has such a major impact on the lives of people living with it, that is simply not good enough. Failing to invest in that research means condemning more people to go on living with, and eventually dying of, motor neurone disease.

As we have heard, although there may be only 5,000 people living with MND at this time, that is not because it is rare. The condition affects one in 300 people across their lifetime, but many of them will die within a year of diagnosis. That means that, without an effective treatment being developed, 200,000 people alive in Britain today will die from MND. Over the last year, we have rightly poured money into projects looking at covid-19. We now need to use the advances that we have made as an inspiration to prioritise medical research for a far wider range of conditions.

One of the many reasons that motor neurone disease should be a priority is the insights that it can give us into other neurological conditions. MND progresses rapidly, which means that we are able to pioneer and trial treatments on a realistic timeframe, potentially opening the door to treatments for other conditions, such as Alzheimer’s or Parkinson’s, which are far slower to develop. The ask from the motor neurone disease community is simple: £50 million for research spread over the next five years to develop an MND translational research institute. That comparatively modest investment has the potential to transform motor neurone disease, to make real progress to make MND treatable, and to accelerate treatments for Alzheimer’s disease and other dementias.

Rather than investing in piecemeal projects, that funding could bring together a new central institute to oversee and co-ordinate a range of research into MND. This would allow knowledge and breakthroughs to be shared widely, potentially accelerating our progress.

Part of the Government’s life sciences vision is addressing great healthcare challenges, including by improving translational capabilities in neurodegeneration and dementia. That is exactly what this proposal for an MND translational research institute addresses, so will the Minister commit to significantly increasing funding for MND research over the next five years and provide hope to everyone currently living with motor neurone disease? In finishing, I thank Greg Broadhurst and Alison Railton of the MND Association and all the campaigners who are raising awareness of this disease and supporting those living with it and their family carers.