Motor Neurone Disease

These important studies have added to the growing evidence that repetitive head impacts in the sporting arena may lead to an increased risk of neurodegenerative disease, and that it will be even worse in 20 years’ time.

It would be remiss of me not to mention someone who has been a tireless MND campaigner in recent years, the former Scottish rugby player and icon Doddie Weir. Doddie was diagnosed with MND in 2017, and has since set up the foundation My Name’5 Doddie in order to raise funds for research into cures for the disease and to provide grants for people living with the condition. So far he has raised more than £1 million. I am sure all Members on both sides of the House welcome that, and will join me in commending him for it.

I am also sure you agree, Madam Deputy Speaker, that it is only fitting for the UK Government to do Doddie’s legacy justice and reconsider their approach to MND funding. They are currently spending £50 million on MND research, and we in the Scottish National party welcomed the announcement of that in November last year. However, given the increasing impact and prevalence of this disease in our communities, it is surely only right and proper for the Government to outline the progress they have made in allocating the funds. I look forward to hearing what the Minister has to say in that regard.

This becomes even more important because there is optimism—optimism that increased research outputs will translate into discoveries, and those discoveries will ultimately lead to the new treatments and the cure that we all wish to see. Just this week, researchers at the University of Aberdeen found that the same proteins thought to contribute to MND can be found in the gut many years before brain symptoms crop up. Those amazing findings have led researchers to suggest that it could be possible to detect and act on MND long before the brain is affected. Not only would additional funding from the UK Government result in an increase in MND investment, but it might contribute to tackling other neurological diseases.

We cannot allow such diseases to progress. Instead, we as a society must progress, find treatments to help those who are suffering, and then prevent others from suffering also.

We owe it to Doddie and everyone in his position to keep fighting for a cure, and we owe it to Doddie to listen closely to his frank assessment of the Government’s funding for research. He said recently that the Government needed to act with more urgency. He said that the fight for a cure was

“definitely getting better but the government has not given MND the money they promised.”

He also said:

“The current process for accessing the money is just not delivering for the MND community. It needs to be streamlined or the professors will spend their valuable time writing multiple applications instead of tackling MND.”

Last year, the Government made a generous and welcome commitment to invest £50 million in motor neurone disease research. I was incredibly proud to play my part in pushing for that funding towards a cure for the devastating disease. That victory, won overwhelmingly by Doddie’s relentless campaigning, was a wonderful display of compassionate government; it is one of the finest actions that this Conservative Government have taken.

But just as Doddie never stopped on the pitch and continues never to stop loving life, we must keep pushing to make sure that this vital funding reaches the frontline faster. Today I want to urge the Government and the Minister to listen to Doddie and do what he asks—not just for his sake, but for every patient in need of some hope. I urge them to provide more resources for MND research, to improve the process and to deliver on our promises. Let us continue to play our part in finding a cure for this awful disease.

I want to comment about Northern Ireland, which is not the Minister’s responsibility so I am not expecting an answer. I will give a perspective of how we do it back home—or perhaps, in this case, what do we not do, although we should.

People with MND in Northern Ireland have a worse standard of care and access to specialist help and support than those in any other part of the United Kingdom. There is a lack of specialists and multidisciplinary care for people with MND in Northern Ireland, where only one part-time specialist neurologist is available. They are available for only one day per month to help people with MND—my goodness! That inevitably leads to longer waiting times for diagnoses of MND and in turn to poorer outcomes and potentially shorter life expectancy post diagnosis. There is only one specialist MND nurse in Northern Ireland, and Northern Ireland is the only part of the UK that does not have an MND care co-ordinator. We fall badly short of what is needed.

The situation for carers in Northern Ireland, both paid and especially unpaid, is a matter of shame. Carers receive almost no support, but they are a vital part of the lives of those living with MND, particularly in light of the current lack of care provision within the NHS in Northern Ireland. For many reasons, including those outlined above, there has been no specialist research into MND in Northern Ireland. People living with MND in Northern Ireland should be offered full and equitable access to MND research.

I am ever mindful that health is devolved, but has the Minister contacted his counterpart in the Northern Ireland Executive to discuss a UK-wide MND taskforce? MND has been overlooked, and that must be reversed. Northern Ireland can gain and learn from what has been done in England, Scotland and Wales.

After months of dedicated campaigning, the United to End MND coalition of patients, charities and researchers won a huge victory in November 2021 with the news that the Government would invest £50 million over five years in targeted MND research. I thank the Minister, the UK Government and the Northern Ireland Executive, as this funding is welcome. The announcement was made by the then Prime Minister on 14 November 2021, and £50 million was the exact figure requested by the coalition’s submission to the 2021 spending review for the establishment of a virtual MND research institute to initiate a comprehensive five-year plan specifically for translational MND research to accelerate the discovery of treatments for this devastating disease. It is really good news that something like this is coming from the Government.

Since the announcement, the coalition has engaged with both the Department for Business, Energy and Industrial Strategy and the Department of Health and Social Care, and we understand that BEIS will provide 80% of the funds and DHSC will provide the remaining 20%. This is incredible news, and I ask to Minister to confirm it in his response.

Without the funding, the existing system will not support the infrastructure needed for close collaboration between five of our leading universities and 22 research centres. Without this ongoing close collaboration, game-changing progress cannot be realised. How can we better use the universities and that collaboration? Having full, reliable funding over five years, without the need to reapply repeatedly, will free scientists to conduct science, rather than making time-consuming grant applications, as the hon. Member for Berwickshire, Roxburgh and Selkirk (John Lamont) said. The funding will also support the retention of key staff, and cash will be released at pre-determined time points, according to the approved work plan.

The challenge posed by the existing system is that the Medical Research Council and the National Institute for Health and Care Research fund grants of up to £2 million at most, and many grants are for far less. The aim of a co-ordinated national approach is to avoid piecemeal efforts that break the united vision of a single co-ordinated UK team working to cure MND.

The Government’s “Life Sciences Vision,” which seeks to establish the UK’s position as a post-Brexit life sciences superpower, refers to building on the

“ways of working from COVID-19 to tackle future disease challenges”.

We learned a lot from how the Government responded to covid-19, and we can use that expertise to research cures and treatments for MND. One of the vision’s missions is:

“Improving translational capabilities in neurodegeneration”.

MND is the neurodegenerative disease that is most ready for translation. MND is a gateway disease to illnesses such as dementia.

We need to address the cost of living issues with a benefit uplift, increased support for unpaid carers and the provision of access to skilled social workers. These are all essential, and they all need ministerial direction. I look forward to hearing from the shadow Minister, who is a dear friend, and the Minister, who has the power to give that direction. People with MND are living in a prison, and we have the ability to open the door and let in some light. I believe we must do that by providing the help they are crying out for.

From the experiences that Members have relayed in today’s debate, that is what we want to see the Government do, Minister. We want them to take the negative, and the experiences, passion and fervour of these individuals, and turn that into action.

It has been a huge pleasure for me on a number of occasions to meet Doddie Weir, a giant of a man both on and off the pitch. He has the courage and the ability—I am sure Jimmy Johnstone was the same—to reach out to people who do not necessarily take health seriously and connect. We have heard many discussions in the Chamber about how men, particularly middle-aged and older men, do not take their health seriously, but by working with rugby interests and in communities across the Borders and across Scotland, his My Name’5 Doddie Foundation has been a hugely positive force. For anyone who has not visited its website, let me say that it really is very worthwhile and demonstrates a host of ways in which people can help and become involved. Constituents of mine, such as Hilary Carmichael in Boreland, in Dumfriesshire, who had no personal connection to Doddie have been inspired to campaign locally—to run small events to raise funds. We see that happening across the piece, including to larger organisations such as Peebles rugby football club, which took part in August in the MND big pull weekend. Given all the money that has been raised by Gordon, Doddie and those people who have come to understand and be concerned about the disease, we want to see the Government matching that level of support.

Some of these issues are devolved in Scotland, and the Scottish Government have played a positive part. Indeed, the Euan MacDonald Centre for MND research in Edinburgh is making great strides. There is also research into terazosin, which may be able to slow the progression of MND, and, again, that is to be welcomed, along with the £50 million the Government have already committed and the £375 million for research into neuro- degenerative diseases in general.

However, as Members have indicated, they want to see a vigour and a focus in that research and they want to see the Government playing their part to ensure that we can move, hopefully, towards a cure and a fitting real legacy for people such as Doddie, Gordon, Jimmy Johnstone, and Jim Hughes who have effectively given their life for this disease.

Most worryingly, MND is on the increase, and we do not yet know why. The only effective drug available to fight it is called riluzole or Rilutek, which can deliver a small improvement in patients’ overall survival, but it is not a cure and does not stop the condition progressing.

Last year, I spoke at length on this issue when opening the Petitions Committee debate in July. The urgency and potential benefit of dedicated research funding has been well made over a sustained period by many Members here and Members who were in that previous debate. That need is more urgent than ever now.

The research for new therapies requires a truly multi-disciplinary and pan-national approach, spanning the entire translational pathway. Establishing a virtual MND translational research institute, which campaigners have consistently called for, will deliver that. There is no doubt that extra MND research funding from the UK Government is needed to support effective patient treatment and medicines, in the hope that a cure for MND can be found soon. That is what the petitioners in the previous debate and the sufferers of this disease need, and I believe that it is possible. Sufferers simply do not have time to wait for action. They need results now—their life expectancy is, sadly, too short.

I was truly delighted, therefore, when the UK Government announced the £50 million funding specifically for research into MND last November. I have praised them on the record for it before and I do so again today. I am also grateful that we had confirmation only last month that that funding is ring-fenced. However, I would particularly like to know what progress has been made in allocating the funding. Just when will the consultation on the MND partnership result in a tangible plan? Progress on that feels too slow for my liking, so if the Minister could address those points I would be grateful.

In November 2021, the Government made a welcome announcement of £50 million of ring-fenced funding into MND research over the next five years. However, almost a year since the promise was made, we still have a long way to go to achieve the progress we need to support those living with MND. Unsurprisingly, given the uncertainty around the future of our economy and the future of our Government, there is also uncertainty about what the future holds for MND and those affected by it.

I will start briefly with the future of MND research. First, when the Minister rises, will he confirm that the pledge of £50 million of ring-fenced money into MND funding is still Government policy? If it is still policy, when will it be delivered? We will support him in turbo- charging that roll-out.

Will the Minister also give assurances about the wider future of R&D spending? As he knows, there are worries in the sector: we are being told that, at the current Chancellor’s forthcoming fiscal event, we can expect cuts to public services and public funding. Should we expect cuts to R&D spending, as many in the science community fear? I hope that is not the case. As the Minister also knows, soaring inflation means that funding counts for less, and the devalued pound means that the cost of the imported equipment and technologies that are crucial to running research laboratories is rising. What assessment has the Minister made of that issue?

Investment in research is crucial to treating MND, but it is not the only thing that matters: if we want to invest in a better future for those with MND, we must also invest in a better future for our NHS and social care system. If we look at the workforce, there are 132,000 vacancies in the NHS and 165,000 vacancies in social care. Given those chronic shortages, it is hardly surprising that, according to the MND Association, more than a third of people with neurological conditions such as MND have reported waiting more than a year between first experiencing symptoms and getting a diagnosis; that only 44% of adults with neurological conditions ever have an appointment with a specialist nurse; and that only 26% of people living with MND receive social care support. Those figures are further proof of the desperate need for a workplace strategy, which this Government have not yet delivered. I hope to impress on the Minister the urgency of that matter. Will the Government listen to the MND Association’s calls for a recovery and respite plan for family carers? As the Minister knows, the enormous stresses that those people are under anyway have been compounded by the impact of the pandemic. Again, if the Government produce such a plan, we will support it.

Finally, providing housing that meets the accessibility needs of people with MND is a vital part of making sure they can maintain their dignity, independence, and the choice to stay in their own home for as long as possible. A guiding principle of Labour’s approach to social care is “home first”, because the vast majority of people want to stay in their home for as long as possible, yet too many struggle to get even the basic support for home adaptations that makes that possible, with a quarter of housing authorities describing their need for accessible homes as severe. Investment and reform in research, the NHS, social care and housing are the steps needed to ensure a better future for those with MND. Labour is committed to delivering that better future, and to supporting this Government to deliver it while they remain in office. Please, let’s just get on with it.

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.