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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”.
It seeks
“new investment of £50m over 5 years”
to kick-start 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.
I am looking to call Front-Bench speakers from about 5.25 pm, so if Members could limit their contributions to between four and a half minutes and five minutes, I would be very grateful and we can get everybody in.
It is a pleasure, Mrs 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.
It is a pleasure to serve under your chairmanship, Mrs 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.
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, research on 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.
I am delighted to serve under your chairmanship, Mrs 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.”
Thank you, Mrs 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.
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.
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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 for 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 for 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 they understand 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, and that 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 significantly increase targeted research funding for MND and invest £50 million over five years to kick-start 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.
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.
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.
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 In finishing, disease? 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.
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.
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 lifetime 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.
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.