Motor Neurone Disease (Research)

Liz Kendall Excerpts

Monday 12th July 2021 Westminster Hall

[Liz Kendall (Leicester West) (Lab)]

It is pleasure to serve under your chairmanship, Ms Cummins. I thank the 110,000 people who signed the petition, including 49 from my own constituency. I also thank the Motor Neurone Disease Association, the My Name’5 Doddie Foundation and MND Scotland for their tireless campaigning on this really important issue.

All hon. Members have spoken very powerfully and personally about the scale and impact of motor neurone disease, including on their constituents, friends and colleagues. While those who suffer from this disorder face a very fearful future at the moment, there is a real opportunity here and, if we seize it, we can transform people’s lives for the better. However, we have to deal with the significant and fundamental challenges in the existing research funding model, and we have to move beyond single centres and small collaborations to a large-scale, international, collaborative and co-ordinated approach. We know from experience that that is how fundamental change is achieved, and that is what we are calling for today.

I do not simply want to make the case that this funding should be provided and this model adopted for a moral reason—to stop appalling human suffering—although that is clear and unequivocal. Supporting this proposal should be a major part of how, after covid-19, we build back a better country that draws on our amazing nation’s world-class strengths in science and research, and that uses the potential of the NHS for clinical trials. Not only will doing so lead to the development of new drugs and treatments that will transform the lives of people with MND and their families and, potentially, those with dementia and other conditions, but it will help to create the high-quality, high-skilled jobs we need, so that we have an economy that is fit for the future.

This case is based on three areas. First, the economic case for funding investment in this sort of research is that if patients get earlier diagnosis and better treatment, and their condition is kept stable earlier on, that delivers better value for money. Treatments in the late stage of MND are up to nine times more expensive, so such investment will ultimately help to deliver better value for money. Secondly, we have real opportunities here for the UK research and pharmaceutical sector, because MND, as many hon. Members have said, is one of the fastest growing sectors in UK health and biomedical research. If that is the case, we should be trying to turbocharge that research and development and give it backing from the broad range of public, private and charitable research funding. That mixed economy approach is a huge strength of this country, and in MND we need to build on that. Thirdly, although everybody has rightly said that the debate is about having very specific funding for research into MND, we know that there may be very valuable results out of it for advances in the treatment of other degenerative disorders, such as dementia, which is a huge issue facing this country.

What now needs to happen? I do not need to repeat what hon. Members have said, but we need to bring this together into an MND research institute to implement rigorous clinical research programmes and sustainable MND trials programmes, linking up with the NHS, to provide infrastructure to accelerate treatments and bring them to market in a partnership between our research and industry, and support world-leading drug discoveries and development. If the Minister has not already, will she meet those involved in this sector from the medical research charities, universities and industries, and bring them together, alongside her colleagues from the Department for Business, Energy and Industrial Strategy and the Treasury—we need a cross-Government approach on this—to go through the proposal in detail and look at the value for money, as well as the patient outcomes that it would develop?

On the point that my hon. Friend the Member for York Central (Rachael Maskell) rightly made, will the Minister also meet the Association of Medical Research Charities, if she has not already? During the pandemic, all medical research charities have seen their income slashed, and we really need a plan to get that research going again. As my hon. Friend said, the Association of Medical Research Charities has proposed a life sciences charity partnership fund, so that all the research done and the skills, knowledge, people and expertise do not go to waste because of the pandemic, and so that we get this back on track.

Let me end where I began. If we want to build back a better country after this pandemic, we need to think and work differently rather than in the same old ways. We are world leading in science, research and the pharmaceutical sector. Alongside our NHS, with the potential that leaves for clinical trials, it is a no-brainer that this is an area that we should focus on. I ask the Minister to raise her eyes, sights and mind to think about all the potential that this could bring for sufferers and their families, and for the life sciences, in which Britain leads and should continue to lead in future.