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I beg to move,
That this House has considered e-petition 564582, relating to research into motor neurone disease.
Motor neurone disease is a rare disease that is sadly all too common. It is the most common neurodegenerative disease of midlife, and many younger people are also affected. It is currently a terminal and incurable progressive condition. Progression is rapid, with one third of people dying within a year of diagnosis. Because people with the condition generally die so quickly, only 5,000 people in the UK live with the disease at any one time. However, MND is not rare. One in every 300 people across all communities develop MND in their lifetime, and about 200,000 of the current UK population will die of MND unless effective treatments are found. It is diagnosed in 200 Scots every year, and more than 1,500 people in the UK.
Currently, the only drug available to directly affect MND is called Riluzole, or Rilutek, but I am told that it has limitations, so it is hardly surprising that the petition achieved more than 110,000 signatures. The petition calls on the Government,
“to significantly increase targeted research funding for motor neurone disease”.
“new investment of £50m over 5 years”
to kickstart an MND research institute, which the petitioners argue
“would lead to better, faster and more definitive research outcomes and hope for those with MND.”
In their response, the UK Government recognise the immediate challenges faced by people with motor neurone disease and reiterate their commitment to supporting MND research, which is welcome and I hope gives some encouragement that common ground may be found to take the issue forward. I will return to the Government response to the petition in more detail shortly, with some questions that I hope the Minister will address when responding to today’s debate. First, I want to pay tribute to the amazing work carried out by the petitioners and the charities and individuals involved in tackling MND on a daily basis.
George Wilson “Doddie” Weir created the petition and is one of rugby’s most recognisable personalities, earning 61 caps for Scotland during a successful playing career. He represented the British and Irish Lions on their successful tour to South Africa in 1997, and won championships with his two club sides, Melrose and Newcastle Falcons. In June 2017, six months after receiving his diagnosis, Doddie revealed he was suffering from motor neurone disease. From then, his mantra has been “I’ve just got to crack on.” Five months on from going public, Doddie and his trustees launched and registered the charity, My Name’5 Doddie Foundation, with a shared vision of a world free of MND. The No. 5 is special for the foundation. It features in its name and is a reference to Doddie’s playing number for his clubs and the jersey he wore when he earned 61 caps for Scotland.
On meeting Doddie, albeit virtually, last week, I was struck by the positivity and the energy that he continues to have four and a half years on from his diagnosis. Doddie is not the only high-profile personality to succumb to this terrible disease and face up to it. The most recognisable scientist of modern times, Stephen Hawking, defied it for 55 years. Rob Burrow, another rugby great, was diagnosed with motor neurone disease in December 2019, just two years after ending his playing career by captaining Leeds to a record-extending eighth super league grand final. He described the disease as follows:
“First it comes for your voice. Then it takes your legs. It tries to rob you of your breath. But it can’t sap your spirit.”
Inspirational as these people are, that does not portray the difficulties of living with MND. Everyone living with it is inspirational. They understand that what is holding back progression in the development of effective treatment and a cure is a lack of targeted funding.
I have heard testimonies from Emma, a young mother diagnosed with MND at 37, who can no longer stand, and David, diagnosed in 2012, who accepts that he is lucky because of the slow progression of his MND. Both consider themselves lucky still to have a voice. Indeed, everyone I met during my research for today’s debate is excited about the progress made thus far, but they also know that MND research is disparate and needs to be targeted. I urge the Government not to dampen the growing expectancy that currently exists among the MND community and to meet the requests of the petitioners.
I would now like to go through the official Government response to the petition in some detail, and to comment and question the Government on it. The response stated:
“Over the past five years, the Government has spent £54m on MND research, through the National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI) via the Medical Research Council.”
Yet according to a written parliamentary answer of 14 January this year, the National Institute for Health Research
“funded no Motor Neurone Disease-related projects”
during 2019-20. Can the Minister provide details of any MND-related projects or programmes that received funding from the NIHR over the past five years? The same answer detailed £5 million of MND-related projects funded by the Medical Research Council during 2019-20. Can the Minister provide details of any other MND-related projects or programmes that have received funding from the MRC over the past five years?
Analysis carried out by the Motor Neurone Disease Association, MND Scotland and the My Name’5 Doddie Foundation shows that the figure of £54 million of Government spending over the last five years, which is repeatedly cited in written parliamentary answers, includes general neurological research that often has no tangible link to MND. The same analysis shows that funding for targeted MND research stands at less than £5 million annually, which is more in line with the £5 million allocated in 2019-20 that was detailed in the parliamentary answer of 14 January.
Another passage says:
“The Government remains strongly committed to supporting research into dementia and neurodegeneration, including MND.”
While funding into dementia research is much needed and very welcome, it is reported that, in about 5% of cases of motor neurone disease, there is a family history of either MND or a related condition called frontotemporal dementia. Frontotemporal dementia is just one of the many clinical features of MND, yet dementia features 10 times in the UK Government’s response to this petition. It is therefore understandable that the MND research community, who are all experts in their field, appear to be united in their assertion that MND research should not be adjoined to dementia research. Therefore, I wholeheartedly agree with Ammar Al-Chalabi, professor of neurology and complex disease genetics at King’s College London, when he says that it is no longer appropriate for MND to be tagged on to dementia research initiatives.
Another passage in the response says:
“The UK Dementia Research Institute has significant investment in MND research, with a particular focus on the mechanisms that cause the disease.”
Again, this is positive, but can the Minister give details of that significant investment in MND research? Additionally, the statement talks of research that focuses on the causes of the disease, not treatments. That is an area that needs to be focused on. The MND research community have called for targeted funding for MND research because it understands the substantial progress that has been made in establishing much of the basic science around MND and have identified the need to progress to research into treatment.
Another passage in the Government response said that the 2019 Conservative manifesto committed to doubling funding for dementia research, including MND research, including MND research, and the Government are putting plans in place now to deliver that commitment. I checked that manifesto and there is no mention of MND nor of neurodegeneration; there is only mention of dementia. Can the Minister detail what the plans are specifically for MND and say how much funding will be targeted on MND research?
In another passage, the Government response says:
“The Government has been working to establish a rich ecosystem for neurodegeneration research in the UK. Significant elements are the UK Dementia Research Institute, Dementias Platform UK, NIHR Dementia Translational Research Collaboration, and Join Dementia Research.”
Given that four dementia-related organisations are mentioned in a response to a petition calling for targeted research funding for MND, does the Minister accept that the lack of a pioneering MND research institute, which would attract targeted funding, remains a barrier to progress in finding effective treatments and a cure for MND?
Another passage in the Government response says:
“It is not usual practice to ring-fence funding for particular topics or conditions.”
However, it appears from the Government response that funding for dementia has been ring-fenced. In addition, recent global efforts to find a vaccine for coronavirus, including involvement with numerous research institutes, show how quickly progress can be made when funding is ring-fenced for conditions. Those efforts also enabled the fast development of a coronavirus vaccine. People living with MND need fast development of an effective treatment and a cure because of the rapid progression of this disease. Considering recent scientific developments, the UK Government’s levelling-up agenda and the current economic climate that puts charitable funding at risk, the time is right to increase significantly targeted research funding for MND and invest £50 million over five years to kickstart a pioneering MND research institute.
In conclusion, the research for new therapies requires a truly multidisciplinary and pan-national approach, spanning the entire translational pathway. Establishing a virtual MND translational research institute, which the petitioners call 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, because that is what the petitioners and the sufferers of this disease need.
It is a pleasure, Ms Cummins, to serve with you in the Chair this afternoon.
I am pleased to take part in the debate on this petition, which has attracted so much support from my own constituents in the Scottish borders, with my constituency of Berwickshire, Roxburgh and Selkirk ranking second in the United Kingdom for the number of signatories in a constituency. I imagine that part of the reason for this is that Doddie Weir, founder of the My Name’5 Doddie Foundation, lives in the Scottish Borders. However, Doddie Weir’s impact extends far beyond the Scottish Borders. In fact, the reason we are all here today for this debate is because the petition was launched by Doddie and his foundation.
Doddie is someone I know well, and I can understand why he has persuaded so many people to support his campaign and petition. He has faced his fair share of challenges on the rugby pitch and has a remarkable list of achievements to his name: 61 caps for Scotland; representing the British and Irish Lions; and playing locally for Melrose as well. However, Doddie has said on numerous occasions that the greatest challenge he has faced is off the pitch—battling motor neurone disease.
In June 2017, Doddie revealed that he was suffering from MND, and within months he and his trustees launched a registered charity—My Name’5 Doddie Foundation. The way in which Doddie is driven to champion fellow sufferers and research into this devastating and currently incurable disease is both admirable and inspiring. His selfless work has been vital in raising awareness and generating millions of pounds for such an important cause. Doddie and the foundation have generated huge momentum among individuals, sports clubs and other organisations to raise awareness and vital funding for MND research and support. I was honoured to raise money for the cause by running the London marathon in 2018.
Many other borderers have completed challenges for My Name’5 Doddie Foundation. There are too many to mention in this short contribution, but challenges such as Lions Trek for Doddie and the Coast to Coast in 24 hours come to mind. The Prime Minister also threw his support behind Doddie’s Active Inter-District challenge, which raised more than £1 million.
At the crux of this debate is a devastating disease—a rapidly progressing neurological condition that leaves individuals unable to walk, talk, eat and, ultimately, breathe. One in 300 people develop it in their lifetime, and a third die within a year of receiving their diagnosis. My Name’5 Doddie Foundation provides practical help through grants, and funds research into this terrible disease. It gives considerable sums to the MND Association and MND Scotland to provide support for individuals and their families living with motor neurone disease. Overall, it has raised more than £8 million since 2017. It has granted more than £3 million to medical research projects, and more than £1 million has been given through grants to help sufferers of MND.
In March, when I asked the Prime Minister about funding for MND research in Prime Minister’s questions, I was reassured to hear that the Government have spent £54 million on research over the past five years through the National Institute for Health Research and UK Research and Innovation. I am also glad that the Government are putting in place plans to deliver their 2019 manifesto commitment to double funding for dementia research, which includes MND research. However, it is crucial that we redouble our efforts to consolidate the work that has been done. It is vital that Governments across the UK, the research community and charities work together in the hope that, one day, we can find a cure.
I pay tribute to Doddie, My Name’5 Doddie Foundation, MND Scotland and the MND Association. Those organisations are dedicated to supporting sufferers of MND and their families, and are striving relentlessly to find a cure for this horrible disease.
It is a pleasure to serve under your chairmanship, Ms Cummins. Like me, you will be well aware of the position of Rob Burrow, the former Leeds Rhinos player, who had an illustrious career as a rugby league player. He is lending his strong support to Doddie Weir’s campaign for more work to be done on motor neurone disease because of the devastating effect on him, once a super-athlete. It has reduced him to someone who knows that he is enjoying the last of his days on a kind of borrowed time—not the way any super-athlete would expect to end.
I also want to talk about the sheer humanity brought out by motor neurone disease. I have lost friends to this horrendous disease. A very good friend of mine, Steve Mycio, who worked with me when I was a police and crime commissioner—he was the deputy chief executive at Manchester City Council—had a sharp brain and a keen intellect and was a very powerful runner, but when motor neurone disease struck him, it was not long before it had a devastating effect on him. Because he was such a strong character, he did everything he could to make sure life continued as normal. He described the consequences of losing the use of both arms and falling flat on his face as almost comical, but he lost the capacity to do things he had taken for granted for so long. It is such a cruel disease.
The wife of another friend of mine said to me after he died, “Actually, death was a blessing. He didn’t want to live locked into a condition that left him at the mercy of his brain, but not with the use of his body.” That is the reality of MND. That is why this debate and the petition are important. We need research, and I hope the Minister will be able to give us some proper answers today.
When I talk to neuroscientists they say that they believe it is possible to find, if not a cure, at least pharmaceutical solutions that can take people forward on their MND journey, and maybe control MND in the long run. The prospects are truly enormous. The hon. Member for Linlithgow and East Falkirk (Martyn Day) made a very good speech. It is right and proper that the funding for MND be there in its own right, not simply linked to other neurodegenerative diseases. Nevertheless, the possibility of cracking the code for MND gives hope, so neuroscientists tell me, that we can begin to look for cures and solutions to other neurodegenerative diseases.
We know that a third of those who contract MND will be dead within a year, and for others the prospects are not good. There may be 5,000 people at any one time suffering from this disease, so £50 million as an investment in stopping that kind of suffering makes human and societal sense. In the end, it makes financial sense, because if we invest now and concentrate efforts, there is a possibility of seeing results very soon. It could be world-advancing science, and this country has the neuroscientists and researchers capable of taking it forward. I join very strongly the demand of the e-petition that we make this investment in an MND translational research institute. It can make a material difference. It can stop the human suffering that MND causes. That is worth spending some of our money on.
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.
I am delighted to serve under your chairmanship, Ms Cummins. I am grateful to the petitioners and those who signed this petition. The purpose of the petition is to seek to secure an increase in targeted research funding for motor neurone disease with a new investment of £50 million over five years to kick-start a pioneering motor neurone disease research institute. We do not need to stand here today and wonder how it could be done, because I hold in my hand an excellent proposal from the Motor Neurone Disease Association, My Name’5 Doddie Foundation and MND Scotland for how to make progress on a UK motor neurone disease translational research institute, but of course it needs £50 million over five years, as colleagues have spoken about. I understand that about 185 of my constituents signed the petition, which closed on 6 July. They would like progress, and I would like progress, which is why I am here to speak up for them.
We have heard from colleagues that motor neurone disease is not rare, but it is devastating. It is the most common neurodegenerative disease of mid-life, which is a sobering thought for those of us who have just turned 50. I join the My Name’5 Doddie Foundation in calling on the Government to invest this £50 million. Of course, £50 million is a large sum of money when viewed from the perspective of an individual, but taken over five years and viewed from the perspective of the Government, it seems to me a reasonable sum to invest when progress could be so possible.
I just turn to the charities’ briefing, where they set out the opportunities:
“Despite limited investment, MND is one of the fastest moving sectors in UK health and biomedical research. Current trials hold real promise of a licensed treatment in just 2-3 years for some forms of MND…Counterintuitively, MND, with its relatively low prevalence, is incredibly valuable to research into the more common neurodegenerative diseases such as the dementias. The very rapidity of MND progression makes it easier to pioneer and trial treatments in a realistic time frame.”
It also says that there is increasing interest in MND research from global pharmaceutical companies, and that although the size of the MND market is not insignificant, drug companies also see this as a route to the treatment markets for Parkinson’s and Alzheimer’s disease. That really points to what could be possible if the Government are willing to find this sum of money for a research institute. I implore Ministers to make the case to the Treasury to do that, because this significant cash injection is needed to fund this virtual research institute. I have had a number of exchanges with Ministers in letters and parliamentary questions. I think we need to be clear that the £54 million cited takes within it a broad spectrum of research. What is being asked for is targeted research, specifically on MND. It is about getting this plan done.
It would be reasonable for Ministers to ask what success would look like, and I am happy to say that, on page 15, the proposal sets out what success would look like. I will just make four points. First, the institute would maintain relentless progress and urgency in ensuring a continuous pipeline of treatment candidates, with at least 10 novel drug compounds prioritised into pre-clinical and early-phase human studies by year five. I believe that would count as tremendous progress. Success would also involve: the deployment of an innovative, on-demand clinical trials platform; learning rapidly from each and every trial, successful or not, through newly developed biomarkers; and, crucially, driving nothing short of a total revolution in the consultant-patient discussion, making sure that the offer of a trial of treatment would be the expectation from the very first consultation upon diagnosis, as opposed to the exception, so that it would become part of every patient’s care plan.
Because of the particular characteristics of motor neurone disease, and because of the particular sum involved and the nature of the proposal made by the charities and everybody else involved, I implore the Minister to look carefully at how this proposal can fit into the Government’s plans. I think we are still passing the Bill to establish the Advanced Research and Invention Agency, the research institute. If we are not going to do this with this money—if we are not going to make this kind of progress, this fast, in people’s interests—whatever are we passing that Bill to do? Please, do back this proposal.
Thank you, Ms Cummins, for chairing this afternoon’s debate. I also thank the petitioners for their strength in putting forward the petition we are debating today: I know that for many of them, this issue will be personal. For myself, as a clinician who worked in neurology, I worked with many people with motor neurone disease. I am also a constituency MP who is supporting my constituents, and my uncle—a radical academic in his day—sadly was lost to MND.
One in 300 people is likely to have MND, and once diagnosed, life passes all too quickly, so in opening I put on record my thanks to all those who have supported people with MND over the past year, in what has been the most challenging of all years: the clinicians, the families, the carers, the Motor Neurone Disease Association, and the wider community. At times, it has seemed that covid-19 has been the only battle the NHS has had to face, but its dominance has compounded the challenges that others have had in other areas of medicine. Although we have seen so many miracles in the NHS over the past year, we are now calling for another miracle, which is for the Government to release vital research funding. As clinicians, we want to do everything we can for our patients, and it is frustrating and stressful when we can see the solutions, but do not have the means to deliver them.
As we have seen, when we put the necessary investment into prevention and cure, it provides hope, and our nation has been given that hope about covid-19 by the brilliant scientists who have developed the vaccine. We want that research to lead to a new path for people with motor neurone disease. Of course, we understand that scale matters, and that is why so much focus has been given to the pandemic. However, when a third of a million people at any one time across the globe has motor neurone disease, we can see that scale is important for that disease, too. As internationalists, we must work across borders to ensure we find the right science and solutions in medicine. To date, the cause of MND is largely unknown, and the cure is yet to be found. Most research has been based on bettering somebody’s prognosis over a shorter period, and enhancing their quality of life while they are able to hold on to it.
Although the Government are one source of funding, uniquely in the UK the charity sector funds medical research, accounting for about 51% of all funding through the generous donations of 7 million people, research trusts, and funds. That sector funds about 17,000 researchers in all, and the basis of research in the UK needs to be thought through again so that big pharma is not taking some of the resourcing and the long-term profits, to ensure reinvestment in research and more money going into that area.
Back in 2014, MND had a funding boost through the ice bucket challenge, which certainly increased research opportunities. However, this pandemic has had a significant chilling impact on medical research over this past year—one we can ill afford—as research scientists have had to find work elsewhere. Charities themselves have had fundraising opportunities stopped and their shops shut, and Governments have not stepped in to support the charities that are behind all of this important medical research, not least on motor neurone disease. That is why the proposal to create a bespoke £50 million fund over five years to invest in a specific MND research institute, making the UK a global leader yet again, is so important for all of us. I therefore urge the Minister to seriously consider this proposal, not least because the Association of Medical Research Charities came together last year and made a proposal for a life science charity partnership fund, with £310 million invested over a three-year period, to address the deficit that they have experienced during the pandemic. The Government have not come up with the resources to meet that challenge, which is grossly disappointing.
I trust that the proposal before us will be acknowledged, because for every £1 invested, there is a 25p life-time return in benefit, which far outstrips the value that other investments made by Government can bring. If health and science development and research is a major industry in the UK, valued investment in that research will bring long-term economic benefit, as well as real personal benefit for those involved.
As our melting pot of research enables world-class research to move forward, as well as enabling innovation here, I trust that the Minister will respond positively and bring real hope to the thousands of families who need to know that hope is on the horizon.
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.
It is an honour to serve under your chairship, Ms Cummins. I thank the hon. Member for Linlithgow and East Falkirk (Martyn Day) for introducing this important petition to the House.
I thank the 110,700 people, including 225 of my constituents, who signed the petition and campaigned for an increase in much-needed funding for urgent research into motor neurone disease. I pay tribute to constituents in West Derby who have been diagnosed with motor neurone disease and to their families and friends.
The petition has one clear ask: new Government investment of £50 million over five years to kickstart the pioneering MND research institute. That call is based on the assessments made by the Motor Neurone Disease Association, MND Scotland and My Name’5 Doddie Foundation. The Government, in their response to the petition, claim that they have spent £54 million on MND research over the past five years, but analysis by the MND Association shows that the figure includes general neurological research, often with no tangible link to MND. I therefore urge the Minister to come back with the package of targeted support that is needed.
Today, I will speak about a friend and constituent, Mark Maddox, his fight against motor neurone disease and how his work exposed me to the heart-breaking impact that it can have. I will do everything I can to assist in this campaign moving forward.
I first met Mark a decade ago, when I helped to coach his youngest son’s football team—he will laugh, watching this, at the word “coach”. Mark was diagnosed with motor neurone disease in 2010. It was my first experience of the disease, with the impact that it had on him, his family and friends. Mark is an absolute legend of the local football scene both in Liverpool and at Altrincham football club, where between 1996 and 2006 he made 349 appearance as a tough-tackling captain and centre-half. The bravery with which he has tackled the disease was hewn from that background.
After being diagnosed with motor neurone disease, Mark ran three marathons, skydived, did bike rides, released an album and, in 2011, fronted a nationwide campaign through every football league in the country, reaching more than 2 million people through match-day programmes. He also appeared on Manchester United TV—despite being a huge Liverpool fan—BBC North West and various radio stations, as well as LFCTV making a mini documentary about Mark. That was all done to raise awareness and funds for the campaign to fight this cruel disease.
Mark was told at diagnosis that he would be lucky to live beyond a year—that was 11 years ago. Mark believes that the love and support he receives from his family—his wife in particular—his friends and often complete strangers have helped him to get through to this day. Over the past decade, however, Mark has become increasingly frustrated with the Government’s lack of understanding of people with motor neurone disease and their families and of its devastating effects. He wants change.
To finish, I urge the Minister to listen to Mark and the many other people who have been diagnosed with motor neurone disease and to say, “No more!” Motor neurone disease stopped Mark achieving great things in football and, with world-leading UK scientists on the cusp of major breakthroughs in MND research, we need a commitment from the Government: for a vital increase in the funding that will accelerate the discovery of treatments; and to pledge the funding needed to kickstart a pioneering motor neurone disease research institute. Together, we can work to end motor neurone disease so that people diagnosed, like Mark and countless others, can fulfil their potential.
It is a pleasure to serve under your chairmanship, Ms Cummins. Like others, I thank the hon. Member for Linlithgow and East Falkirk (Martyn Day) for presenting the debate today and for the meticulous, detailed and caring way he laid out the statistics and what motor neurone disease means to so many people in this country.
The statistics are frightening. One in 300 of us, as we have heard, can be struck by motor neurone disease in our lifetimes, but because it claims lives so rapidly we are never as a society fully aware of its impact, of the number of lives disrupted, families torn apart, and the suffering in our own communities. I am sure many of us, as has already been mentioned, have experienced the trauma of watching someone we know and love fighting this debilitating, progressive and ultimately always, at this point in time, fatal effects of motor neurone disease.
Like others, I want to pay tribute to all of those who have done so much to raise this petition and bring this debilitating condition to public attention. Almost 400 people in my constituency of Edinburgh West signed it, and I know that many more of them are aware and determined that we should make a difference—many because my constituency is also the home of Scottish rugby, of Murrayfield, the site of many of Doddie Weir’s on-field achievements. For my generation, seeing him on a rugby field or hearing his name in a commentary was reassurance that Scottish rugby was in safe hands. I say “on-field” because the work he is doing to raise awareness and his campaign for research is also a magnificent achievement.
However, it should not be left to those battling the condition to come up with a solution. We have already heard that just £5 million a year is targeted at motor neurone disease research. That is “targeted”. We know that there is general neurological research, but we need to know more about this specific condition itself. That is why it is so important that we have this £50 million investment over five years to establish a virtual motor neurone disease translational research institute and to consolidate the UK’s position as a global leader in neurological disease research. We have also heard that research into motor neurons could open the door on other conditions, and there are practical and financial implications for society and the NHS of being able to relieve people of this burden.
The Motor Neurone Disease Association, MND Scotland and the My Name’5 Doddie Foundation, who have jointly submitted a bid to Government for this year’s spending review, are undertaking a task—a crusade almost—for so many people in this country who are struck by this cruellest of conditions. I say to the Government that £50 million over five years is not a lot in monetary terms, but it could be so much in terms of progress against this disease.
I thank the hon. Member for Linlithgow and East Falkirk (Martyn Day) for the eloquent way he introduced this debate. I will try to be as brief as possible so that everyone can get in. I want to address my remarks to the Minister directly. She has heard why we are here. More than 100 of my constituents signed the petition, and quite a few of them, including myself, have had experience of motor neurone disease affecting either family or friends. It is a brutal, savage condition, but we meet people all the way along the road dealing with this dreadful condition, and they all work on the basis that there will be light at the end of the tunnel, and the light that we see now at the end of the tunnel is research.
Like others, I have been using the Government’s figure of £54 million investment without realising that only £5 million was directly targeted. The sense I get from people at the moment, and from the associations and charities that work in this field, is one of optimism that we could be close to a breakthrough in identifying how to predict, prevent, treat and cure this condition. The sense I get is that a little more money, distributed effectively and invested wisely, could tip us over the edge in tackling this condition.
I say to the Minister that the problem we face is fragmented funding sources and the lack of certainty and predictability about the scale of investment that will really help us to bring the science together and tackle the issue effectively. We will assist her in lobbying the Treasury. We are at that stage in the spending review process when departmental bids are going in and hard negotiations are well under way. We will help her in those negotiations, because not only do we believe that we are on the cusp of a breakthrough but it chimes with everything that has been said by the Prime Minister, the Chancellor and successive Health Secretaries about how we need to invest in life sciences, link with the pharmaceutical industry, and in that way become world leaders.
In the context of the overall spending review, this is not a great deal of money to be asking for on such a critical issue, which affects so many of our constituents and their families in a heartbreaking way. We will support the Minister as much as we can in her submission on this matter. The £50 million that we are talking about over a five-year period is a drop in the ocean in comparison with some investments in other conditions. Many of us believe that we are clearly on the edge of something big that could, again, chime with what the Prime Minister has been saying about how we can be world leaders in the field of life sciences research.
I urge the Minister to take on board everything that has been said by this cross-party group of Members. Behind us, literally hundreds of thousands of people are looking to the Government for the small step forward that could provide us with such an immense breakthrough.
It is a pleasure to serve under your chairship, Ms Cummins. I welcome the petition and thank each and every person who signed and shared it. This is democracy in action.
I reiterate the comments made by my hon. Friend the Member for Linlithgow and East Falkirk (Martyn Day) that extra research funding is essential to support patient treatment and medicines in the hope that a cure for MND can be found soon. The work carried out by organisations and charities such as the MND Association and MND Scotland has ensured that MND research is rightly at the forefront of political debate. I also reiterate the comments made by my colleague the hon. Member for Berwickshire, Roxburgh and Selkirk (John Lamont) that the work done by the My Name’5 Doddie Foundation goes beyond the constituency that he represents and where Doddie lives.
It is important to acknowledge that 1,100 people across the UK have been diagnosed with MND. It is thought that diseases related to motor neurones affect approximately 5,000 adults at any one time. Today, we have heard colleagues from across the political spectrum unite. Every one of us has gained an understanding of how debilitating MND can become. While research into this life-limiting illness continues, we recognise that additional funding is required to further advance the ambitions of experts who believe that getting a cure is becoming closer than ever.
As the hon. Member for Edinburgh West (Christine Jardine) stated, the numbers are frightful. After developing symptoms, most people with MND will die within two to three years. About 25% of people live beyond five years, and that reduces to 10% at 10 years. Additional funding for research will be vital to extend life after diagnosis and improve quality of life by slowing the disease’s aggression.
Although today we are discussing research and funding, they cannot be seen as isolated factors. There are clear links between research and investment in palliative care standards to improve the quality of life of those with MND while research continues to develop. As the hon. Member for Wycombe (Mr Baker) said, we need progress and targeted support.
On a personal level, I remember scrolling through Twitter back in 2014, in the middle of a hotly contested referendum on Scottish independence, and seeing politicians united in their support for MND research. Gordon Aikman, the director of research for the Better Together campaign, who had previously worked for the Labour party, was diagnosed with MND. I pay tribute to him because I was always in awe of him. I never knew him and had never met him, but I always felt a strong sense of resilience from him. His campaign was fearless and forceful, and was exactly what was needed to put MND high on the agenda. He championed more investment, research into MND and general awareness of the disease.
Campaigns have been absolutely vital in raising awareness of MND. The Scottish public raised £500,000 in the ice bucket challenge, through which more than £7 million was raised in the UK and more than $100 million worldwide. Such challenges may seem trivial, but their impact is profound. As well as raising incredible sums of money, they generate awareness. That is commendable, but we cannot rely on the generosity of the public and internet trends to ensure that the UK leads the way in pioneering research into devastating diseases.
In Scotland, the Scottish Government are committed to ensuring that neurological patients can access the care, support and information they need, and that they can understand their condition following diagnosis. Between 2015 and 2018, they committed more than £700,000 to research for motor neurone disease. Additionally, in 2019, about £400,000 was invested over three years to fund two postdoctoral posts at the UK Dementia Research Institute at the University of Edinburgh to research and develop new treatments for MND.
Recent University of Edinburgh research found a problem with MND patients’ nerve cells, which could be repaired by repurposing drugs approved for other diseases. It found that the damage to nerve cells caused by MND could be repaired by improving the energy levels in mitochondria—the power supply to the motor neurons. In fact, it discovered that in human stem cell models of MND, the axon—the long part of the motor neuron cell, which connects to the muscle—was shorter than in healthy cells, and that the movement of the mitochondria, which travel up and down the axons, was impaired. The scientists showed that that was caused by a defective energy supply from the mitochondria, and that boosting the mitochondria caused the axon to revert to normal. Although the research focused on the people with the most common genetic cause of MND, the researchers said that they were hopeful that the results would also apply to other forms of the disease. The results of the study are now being used to look at existing drugs that boost mitochondrial function.
The hon. Member for York Central (Rachael Maskell) spoke about an international approach to tackling MND. The results from the University of Edinburgh show what can be achieved in a single research centre. The MND research strategy now needs to move beyond single centres and small collaborations that answer narrow research questions towards a large-scale, co-ordinated approach to tackle every aspect of the translational pathway, with the multi-disciplinary expertise available nationally and internationally, and rapidly find and develop new effective therapies for MND. As my hon. Friend the Member for Linlithgow and East Falkirk stated, the search for new therapies requires a truly multidisciplinary, pan-national approach spanning the entire translational pathway. Establishing a virtual MND translational research institute, which the petitioners have called for, will deliver that. We must also note that researchers have developed a line of thinking that suggests that delivering a cure for one neurological disease may in fact make possible effective treatment for others. This is because the disease processes are closely linked. As the hon. Member for Rochdale (Tony Lloyd) has said, not only would additional funding from the UK Government result in an increase in MND investment, but it may contribute to tackling other neurological diseases. Does the Minister recognise this, and will she commit to action and not simply words?
The UK Government should follow the lead of the Scottish Government on universal free prescriptions. Although we are specifically discussing research and investment, we must also bear in mind that around one in every 300 people, across all communities, will develop MND in their lifetime. It is not an age-specific illness, and people will experience different circumstances in the early stages of MND. The Government support available must not systematically target those who have this debilitating illness. Free prescriptions are just one way that we can improve the quality of life of those who have been diagnosed with MND while research is still ongoing. Will the Minister commit to considering 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. As the hon. Member for Worsley and Eccles South (Barbara Keeley) noted, over the last year we have poured money into the pandemic response and, as we look forward, additional funding into MND research will transform people’s lives.
I conclude by noting that Members today have contributed in an eloquent manner. Many have spoken from personal experience, including the hon. Member for Liverpool, West Derby (Ian Byrne) and for Southend West (Sir David Amess) and the right hon. Member for Hayes and Harlington (John McDonnell). I therefore hope to hear a positive contribution from the Minister and an actual commitment from the UK Government to help to transform MND research.
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.
It is a pleasure to serve under your chairmanship, Ms Cummins. I thank the hon. Member for Linlithgow and East Falkirk (Martyn Day) and congratulate the petitioners on securing this important debate. I pay particular tribute to the petitioners and to the charities, the MND Association, MND Scotland and My Name’5 Doddie Foundation, for leading the campaign that has brought us here today. I also thank all hon. Members who have spoken so powerfully, sharing the stories of people suffering from this cruel disease and adding their voices to the petitioners’ campaign.
The petition was started in the name of Doddie Weir, the Scottish rugby legend, who has been an inspirational figurehead, campaigning for a world free of MND, since he revealed in 2017 that he was suffering from the disease himself. I had the good fortune to meet, virtually, Doddie and others with MND at a recent roundtable event and I, too, was inspired by their campaign for a brighter future for people living with MND. Doddie’s charity, My Name’5 Doddie Foundation, works tirelessly to raise funds for research into a cure and to provide grants to people living with MND. I want to express my immense gratitude to Doddie and to everyone living with MND for giving their voices to this campaign and sharing their experiences of this awful disease and their hopes for the future. I know that people living with MND will be listening to the debate today and looking for hope. It is to them and to the more than 100,000 people who stand in solidarity with them that I address my remarks.
MND is a brutal condition that has a devastating impact on those who are diagnosed, and on their families and loved ones. As the petition has highlighted, MND can progress very rapidly, and tragically there is currently no effective treatment and no cure. We still do not know exactly what causes motor neurons to die off. Although a small percentage of cases are genetic, the majority of people with MND have no family history of the disease. There is only one drug treatment for MND, and it may slow the disease’s progression for some people. The lifetime risk of developing MND is as high as one in 300 people.
We are making great strides in research, which I will talk about shortly, but we still have a way to go in our research to understand the disease mechanisms and to identify effective treatments. Before I address that progress and our plan to accelerate MND research, I want to speak about how the Government are currently supporting people with MND. Through specialised services delivered by the NHS, people with MND are receiving treatment and support to ease their symptoms and to support their continued independence for as long as possible. That includes the prescribing of complex communication devices to help people with MND to communicate as effectively as possible; offering non-invasive ventilation to support respiratory function; and delivering personal care and support for the needs of the individual.
In 2019, the National Neurosciences Advisory Group published a toolkit for improving care for people with progressive neurological conditions, including MND. That toolkit is helping commissioners to improve the pathways for people with MND, enabling quicker and more accurate diagnoses, services that are more co-ordinated, flexible and responsive to the rapidly changing needs of the patient, and improved choice in end-of-life care for people with MND. That is so that people with MND receive the best possible care. However, although the NHS is delivering that specialised treatment and support to people with MND, we know that it is not the same as a cure.
In recent years, researchers have made major advances in our understanding of MND. For example, we now know more about the types of MND that have a genetic cause, for which gene therapy might be an effective treatment. Although that accounts for only about 10% of people with MND and we still need treatments for the remainder, it is an important development. Researchers are also making progress in the development of the MND register and MND biobanks—data resources that are aiding researchers in understanding the disease. Through the development of novel biomarkers, scientists have more effective ways to monitor responses to treatment in clinical trials; and through innovative and flexible trial designs, researchers are able to conduct faster and cheaper trials, which will deliver potential new treatments to patients more quickly.
I can assure hon. Members here today that this Government are committed to supporting research into MND. I have heard the request from campaigners for Government to invest £50 million to create an MND research institute, and I understand why petitioners are asking for this. However, ring-fencing funding for particular diseases can stop great science. That is why the Government make funding available for researchers in all areas to apply for. Awards are granted in open competition and determined by the quality of the science. Through those funding mechanisms, the Government are supporting a wide range of research into MND.
In 2019-20, UK Research and Innovation, through the Medical Research Council, spent £16 million on MND research. That included research that aims to increase understanding of the causes and genetic mechanisms of MND and amyotrophic lateral sclerosis—ALS—a form of MND. For example, scientists at the UK Dementia Research Institute are working to increase understanding of the root causes of ALS and frontotemporal dementia, and to identify ways of protecting brain cells from damage. There is significant overlap between the genetic causes of MND and some types of dementia, which is why the UK Dementia Research Institute, funded in partnership with Alzheimer’s Research UK and the Alzheimer’s Society, has made significant investment in MND research.
At the Francis Crick Institute, which is co-funded by the Medical Research Council, Wellcome and Cancer Research UK, researchers are working with stem cells to investigate the earliest molecular events of MND. With support from the Department of Health and Social Care, the National Institute for Health Research is directly funding MND research, for instance the Lighthouse phase 2 study, which is a clinical trial of a drug repurposed from the treatment of HIV. This study, involving 300 people with MND, will test the effectiveness of the repurposed drug in improving survival rate, function and quality of life for people with MND.
I am grateful to the Minister for outlining all the research that is being done. However, the benefit of a virtual research institute would be co-ordination, to ensure that there was real focus on bringing about a real resolution for people with MND. Having a piecemeal approach will not provide the real focus that is required. Will she recognise that and therefore reflect on the ability to bring forward such a proposal in the comprehensive spending review in the autumn?
I thank the hon. Member for her point; I will come on to say a bit more about that, and I assure her that I have absolutely heard her argument. However, I am addressing as I go some of the comments and questions raised by hon. Members during the debate, one of which was a request for some examples of research. I have just mentioned one, but there are a couple more that I want to give.
At the NIHR Sheffield Biomedical Research Centre, researchers are trialling the safety and efficacy of a drug called tauroursodeoxycholic acid, or TUDCA, as a treatment for people with ALS. The NIHR is also funding research to enhance support and care for people with MND, with ongoing studies looking at nutrition, diet and therapies to improve psychological health.
Over the past five years, the Government have spent almost £60 million on research into MND and we are currently working on ways to boost this research even further. The hon. Member for Linlithgow and East Falkirk and other colleagues asked about the total figure of nearly £60 million over the five-year period from 2015-16 to 2019-20. That includes research funded by the Government—through both NIHR and UKRI—focused solely on MND; research on MND and frontotemporal dementia, the causes and mechanisms of which have a substantial overlap with MND; research on neurodegenerative conditions that have many commonalities with MND; and spend on research infrastructure within NIHR, supporting MND studies. I hope that that provides some greater clarity on the research spending. In addition, the Government fund research on the structure of the nervous system, cell biology and genetics, and mental processes such as learning and memory. UKRI supports that research with around £30 million of funding per annum.
I am listening to my hon. Friend the Minister with great interest. Of course, following the relative merits of these different programmes is slightly beyond my capabilities in biological science, much as I try. May I invite her to meet the proponents of the research proposal—it compares business as usual, if I may call it that, with the potential results of the proposal —so that she can hear directly from them the advantages that could be gained from it?
I would be delighted to meet the proposers. I was just coming on to talk about a recent roundtable that I hosted, together with the NIHR Sheffield Biomedical Research Centre, which focused specifically on boosting MND research. It brought together researchers, charities, people with MND and funders to consider ways that we could boost research into MND. Government officials are now working with those who attended that roundtable to take things forward, and to encourage and support MND research proposals.
On the particular point about a research institute, applications for funding for research infrastructure, just as for research itself, can and should be made to NIHR or UKRI as appropriate. Bids can win funding through that process, which includes peer review and evaluation. A strong case for this institute has clearly been made in the debate. I am happy to meet my hon. Friend the Member for Wycombe (Mr Baker), and I assure all who are listening that the Government are working with MND charities and researchers on ways we can boost research.
I end by again thanking the petitioners for bringing this issue to the forefront. MND has an enormous impact on individuals and families, and I pay tribute to everyone across the country who is supporting people diagnosed with the condition, and to the incredible and life-changing research that is being undertaken. The Government are committed to working together with the MND community to catalyse further investment and to accelerate progress so that, one day, we will achieve a world free from MND.
I thank the Members who have taken part in the debate. I trust that the Minister will have seen that there is a considerable degree of both consensus and urgency. Given the quick progression of MND, sufferers simply do not have the time to wait. Urgent action is needed to give them hope, and they need that hope now. The ask is relatively modest in the grand scheme of things, especially given that 200,000 current UK citizens will die from this appalling disease if nothing is done. To slightly misquote Doddie himself, it is time to crack on with it. I hope the Minister will bear that in mind.
Question put and agreed to.
That this House has considered e-petition 564582, relating to research into motor neurone disease.