Motor Neurone Disease

Neil O'Brien Excerpts

Thursday 20th October 2022 Commons Chamber

[The Parliamentary Under-Secretary of State for Health and Social Care (Neil O'Brien)]

I thank my hon. Friend the Member for Northampton South (Andrew Lewer) and the hon. Member for Newport East (Jessica Morden) for securing this important debate, and thank everyone who has taken part. My hon. Friend the Member for Northampton South has been a fantastic champion for research on this cause. I was grateful for his comprehensive speech, and for the chance to speak to him beforehand. He has given me very clear marching orders.

The hon. Member for Coatbridge, Chryston and Bellshill (Steven Bonnar) made important points about head impacts in sport, which is clearly a key priority for research, while my hon. Friend the Member for Berwickshire, Roxburgh and Selkirk (John Lamont) gave us the inspiring words of Doddie Weir and made the important point that we must simplify funding for researchers. The hon. Member for Strangford (Jim Shannon) made a typically compassionate and experienced speech, and made important points about the need for all of us around the UK to learn from each other and the interaction between MND research and research into other diseases. My right hon. Friend the Member for Dumfriesshire, Clydesdale and Tweeddale (David Mundell) told us about the inspiring courage of those who have been victims of this terrible disease, but go on to channel that into campaigning for improvements. He also made important points about the need for older people to get themselves checked up, and talked about some of the encouraging research that is happening in Edinburgh.

I was extremely sorry to hear about the terrible personal experiences of the Opposition Front-Bench spokesman, the hon. Member for Denton and Reddish (Andrew Gwynne). To answer some of his questions directly at the start, that £50 million is still absolutely Government policy. He was completely correct to highlight the importance of social care, hence our announcement the other day of an extra £500 million for social care.

I pay tribute to all those impacted by MND who dedicate their time to campaigning for a better future, including those involved in the “United to End MND” campaign and the My Name’5 Doddie Foundation. There is a lot that we must be grateful to them for.

MND is a brutal condition. We have heard throughout the debate about the devastating impact on people and their families. We have made great strides in research, but we still do not know exactly what causes motor neurones to die off. I echo the sentiment expressed in the House: we must move fast for people living with MND now and those who will be diagnosed in future. We need a better scientific understanding of the causes and mechanisms of MND, and we need to ensure that we are delivering the highest-quality care and support for those living with it and their families.

I will now talk about how we are supporting people living with MND and then talk about research. People living with MND need treatment and support to ease their symptoms and maintain their independence for as long as possible. As such, NHS England has set out that all services for patients with MND should be specialised, commissioning the specialised care that those patients may receive from 25 specialised neurological treatment centres across England. That includes the prescribing of complex communication devices, to enable people with MND to communicate as effectively as possible; offering non-invasive ventilation to support respiratory function; and compassionate personal care and support that meets people’s individual needs.

In 2019, the National Neurosciences Advisory Group published a toolkit for improving care for progressive neurological conditions, including MND. That toolkit is helping commissioners to make improvements to pathways for people with MND, enabling quicker and more accurate diagnoses. It also helps to commission services that are co-ordinated, flexible and responsive to the rapidly changing needs of the patient, with improved choice in end of life care for people with MND. That will ensure that people with MND receive the best possible care.

We know we need to get things right for people living with MND and other neurological conditions. That is why we are delivering the neuroscience transformation programme, which will support services to deliver the right service at the right time for all neurology patients closer to home. NHS England has appointed a national clinical director for neurology, who will provide national leadership and specialist clinical advice, and an announcement on that is expected imminently.

Through research, we are making major advances in understanding and treating the disease and funding world-class researchers across many of our universities in the UK. We are seeing real progress, and there are many reasons for optimism. The Medical Research Council invested £10.3 million in MND research in 2020-21, supporting vital research to increase understanding of the causes and genetic mechanisms of MND. At the UK Dementia Research Institute, scientists are investigating the root causes of amyotrophic lateral sclerosis, or ALS—the most common form of MND—and identifying ways to protect brain cells from damage. Earlier this year, the researchers developed a test to detect abnormal protein in the brain. This protein causes 40% of familial ALS cases—that is, ALS that occurs in more than one family member. That highly sensitive test is now being used in a clinical trial to assess the effectiveness of a new treatment for ALS.

At the Francis Crick Institute, researchers are working with stem cells to investigate the molecular processes that cause MND. That research is identifying what may go wrong with neurones, to find ways to treat the underlying disease mechanisms. The National Institute for Health and Care Research translates scientific breakthroughs into treatments that will benefit patients. The NIHR spent £3.2 million on MND research last year, supporting research on care and quality of life, as well as trials of new therapies. Researchers at NIHR’s biomedical research centre in Sheffield have pioneered evidence-based interventions to manage the symptoms of MND. For example, many people with MND struggle to consume sufficient calories, even though there is evidence that eating a high-calorie diet may improve survival. Researchers are developing nutritional interventions to support people with MND in eating a high-calorie diet, which may enhance their quality of life.

The NIHR is also supporting trials of potential new therapies to treat the underlying disease. One study under way is the Lighthouse 2 study, which will test the effectiveness of Triumeq, a repurposed drug from the treatment of HIV, in improving survival rate, function and quality of life for people with MND. In September, NIHR-funded scientists reported findings from a phase 3 trial of the drug tofersen. The trial showed that the drug can slow and reduce progression of the disease in patients with MND caused by the faulty SOD1 gene.

During the debate, we have heard about the need for greater investment in MND research. We have already talked about the £50 million that we are investing over the next five years, and that commitment was reaffirmed in September and again today. That money is available to apply for now from the NIHR and UKRI, and officials continue to work closely with the MND research community and those in aligned scientific disciplines to ensure that the scientific ambitions for MND research can be realised.

In June, we launched a new £4.25-million collaborative partnership, which is jointly funded between Government and charity partners, to bring the MND research community together. That partnership will be led by Professors Ammar Al-Chalabi and Chris McDermott. I know that they and the patient group that has been campaigning for greater investment in MND research are optimistic about the opportunities that the new partnership will provide. Some of its key aims are: to develop better ways to clinically measure MND progression, to develop a bank of human cell models on which to test new therapies, and to improve MND registers so that doctors can collect detailed, high-quality data about the disease. We also launched an NIHR highlight notice on MND to signal to the research community that MND is a priority area and to invite ambitious research proposals from all researchers working in MND and aligned scientific areas.

I am sympathetic to researchers who want to minimise the number of applications that they have to make to secure funding, which is why, during the summer, officials from the Department of Health and Social Care, the Department for Business, Energy and Industrial Strategy, the NIHR and the Medical Research Council met researchers linked to the United to End MND campaign to discuss how the MND research community could effectively access funding through a smaller number of focused applications. The NIHR and the MRC look forward to seeing those applications when they come in and to talking more about how we simplify things.

I personally welcome the opportunity to meet some of those researchers in due course to discuss their progress and how we can further streamline funding and avoid wasting researchers’ time with lots of applications for small penny packets of research funding. That is an important priority in research across the piece, but it is more important in this area than anywhere else, because the research is so urgent and there are many people desperate to see progress. I am keen to meet those researchers and take that forward.

Motor neurone disease is a priority for the Government. I am encouraged that we are seeing progress in research. We will continue to invest in MND research and work with charities, the research community, and people with MND and their families to build on the successes and deliver breakthroughs for people living with MND now and in future.