– in the House of Commons at 3:54 pm on 20th October 2022.
I beg to move,
That this House
has considered the matter of investing in the future of Motor Neurone Disease.
After much delay due to circumstances out of our hands, I am grateful that we have the opportunity to debate this vital issue. I thank the Backbench Business Committee for its efforts in finding us time to speak about it today and Jessica Morden for her support. Time is of the essence for those affected by motor neurone disease, but a time of calm seems not to be fated for the debate, having endured rail strikes at the first attempt and our national loss of Her Majesty at the second attempt. I had intended to comment that at least today was a day of calm, but that does not appear to apply.
I do not usually speak in the Chamber as filler material for procedural purposes. I speak only when I think that I have something to contribute, and that is very much the case today. Back in 2017 when I was selected to stand in my constituency of Northampton South after my time as an MEP, my first meeting was during a visit to the Motor Neurone Disease Association headquarters, which is in my constituency. I had heard of motor neurone disease, of course, but I had no idea that it would become so central to my time in this place and an issue that I would hold so close to my heart. As soon as I joined Parliament, I became a member of the all-party parliamentary group on motor neurone disease. I became a vice chair, and then chair, following Madeline Moon, a former colleague and a formidable campaigner on this topic.
I am sure that hon. Members know what comes with a diagnosis of motor neurone disease. It is a fast-acting and rapidly progressing neurological disease affecting nerves that control muscles. It leads to a rapid deterioration of the body, leaving many sufferers unable to speak. Ultimately, it results in death. Sadly, at present there is no cure. About a third of MND sufferers pass away within a year of diagnosis, and more than half within two years. It affects up to 5,000 people at any one time in the UK. However, I stress that that number would be much greater were it not for the fast-acting nature of the disease. It is therefore in a critical sense not a rare disease.
The debate is about not just stands and numbers but people, many of whom I have worked with and been inspired by. All hon. Members in the Chamber as well as those watching in the Gallery and at home will know about the campaigning of rugby league legend Rob Burrow and his family, as well as his teammate Kevin Sinfield, who have not only brought the Government’s attention to MND but raised its profile. Colleagues will know about the powerful BBC documentary that Rob produced.
Alongside Rob, Doddie Weir and Stephen Darby have shown the same tenacity and dedication to raising the profile of MND, as well as Lee Millard, David Setters and Chris Johnson, who have worked closely with the all-party parliamentary group. They have attended several of my meetings in Parliament and met Ministers as well. From my own constituency, Emma Moss, a mother and former deputy headteacher diagnosed with MND, has just received a Points of Light award for her campaigning. I am in no doubt that her family, especially her daughter, are immensely proud of all she has achieved in the face of adversity. I would like to also mention Ganesh and Rachel Thayanithy, whom I spoke with recently following from Rachel’s diagnosis. They have also shown that inspirational quality.
There are a lot of people I could mention who have done so much to highlight MND and support those with it, but I want to mention my right hon. Friend Sajid Javid whose help was crucial as Secretary of State for Health, one of the busiest roles in Government. When I arranged for a group of MND sufferers and carers to come—this remains one of my most treasured memories—and proceed through the streets to No. 10 to demand action, my right hon. Friend came to see us. He did not just come and say hello; he stayed and spoke to virtually everyone. He had a lengthy discussion with the MND teams and with Professor Al-Chalabi in particular. Outside the bubble, and indeed even inside it, it is not always possible to know who really treats people well and with respect and gives them a fair hearing. I have certainly had some experiences of that myself here, but none of that applies to my right hon. Friend the Member for Bromsgrove, so let the record show that he really is one of the good guys.
In recent years, there has been ever-growing interest from the research community and the pharmaceutical industry in MND. A real surge in studies and trials have offered sufferers and their families some renewed hope for treatment and a cure. Some of those have included the treatment of spinal muscular atrophy, an inherited degenerative condition that targets motor neurones that predominantly occurs in infants and children. The ATLAS trial is actively recruiting SOD1 gene carriers and aims to establish a blood test which can give an early warning that physical disease will manifest within the coming six to 12 months. Participants can then take part in trials of the Tofersen treatment, which initial evidence suggests can substantially slow progression of severe disease, thereby boosting respiratory function, muscle strength and quality of life.
Essential to enabling that research is, of course, funding. After long dedicated campaigning, the United to End MND coalition achieved a huge victory in November 2021 with a commitment from the Government to invest £50 million over the next five years into targeted MND research, involving the creation of an MND research institute to accelerate the quest for treatments. What a rollercoaster that was from there not being any announcement in the Budget—down—to a special announcement a week later—up—that £50 million was forthcoming, made by my right hon. Friend the Member for Bromsgrove. The Government further confirmed in September 2022 that the funding would be ringfenced, which provided confidence, and further victories have followed. A group of charities and Government research organisations have awarded £4.25 million to MND experts at six UK universities to kick-start collaborative moves to find solutions to problems hindering MND research, such as better testing, data collection, wider trial participation and wider access to the only current life-extending treatment for MND, with the aim of making real progress and making it fully treatable within 10 years.
There is, however, so much more to do. The initial ambition of the bid was that the virtual research institute would free up researchers from having to engage with multiple application systems and assessment exercises marked in Whitehall. That detracts from the time researchers can spend on pure research and progressing treatments. I therefore suggest to Ministers that this would be a perfect opportunity to put into practice the new, new Government’s emphasis on cutting red tape. Researchers, desperate to get on, are presenting a way to make better use of public money for the benefit of the cause. Please be more imaginative about tackling process. Please do not let officials say that we have always done it that way. I am very pleased to go and see the Under-Secretary of State for Health and Social Care, my hon. Friend Neil O’Brien to make progress on this issue. I believe that if anyone can cut through this, given his skills and experience, it is him.
Another key area on which progress is needed is access to genetic testing. That is particularly critical in the case of the Tofersen treatment, because it is a gene-based therapy targeting an inherited form of MND caused by mutations in the SOD1 gene. Currently, genetic testing for MND is typically restricted to patients with family members also affected by the disease and patients who do not have a family history but have symptoms starting early in life. According to the Institute of Psychiatry, Psychology and Neuroscience at King’s College London, that state of affairs potentially overlooks hundreds of people, including many over-40s, who have a genetic form of the disease and for whom those new treatments, which are gene-based, could make a real difference. However, there are broader benefits in widening access to genetic testing, too, because it enables people to have an understanding and therefore earlier access to key advice and counselling, regardless of their age.
The confirmation of an MND diagnosis is devastating for anyone to hear. A survey by the Neurological Alliance of 8,500 people living with such conditions found that 40% of those surveyed did not feel that they had adequate access to mental health services. That needs to change. Many said that they had waited a year from their first symptoms after seeing their GP to see a neurological specialist. That also needs to change— notwithstanding the backlogs from the pandemic, and so on—and not only for MND, but for the majority of neurological conditions. In the light of that, I hope that the Government will listen to growing calls from the MND community for the Government to invest in and establish a neuro taskforce to drive forward improvements in neurology services and ensure that the impacts of the pandemic are both understood and addressed for people seeking help for living with MND.
Many sufferers require around-the-clock care, which often falls to family members and loved ones. Although many will give the care that their loved one deserves, that is a difficult and demanding experience. The MNDA carried out a survey and found that 33% of those surveyed spent more than 100 hours caring for their loved one and 45% of those received no benefits at all. That heartbreaking situation should not happen, with even those who receive the carer’s allowance struggling to support somebody, having had to give up a full-time job to care for an MND sufferer—not to mention the problems with disabled adaptations. The MNDA is therefore calling on the Government to publish a recovery and respite plan for unpaid carers, which would focus on packages for carers, including mental health, financial and other measures.
As we move into the winter and spring, there are justified concerns from the MND community about the non-inclusion of MND carers in the winter and spring covid booster vaccination programme. I would be grateful if the Minister considered expanding access to MND carers.
MND is a disease that affects people from all communities. The nature of the disease requires specifically trained carers, as that not only ameliorates the condition but helps to prolong sufferers’ independence and autonomy, maintaining their wellbeing and dignity as the disease progresses. Given those specific needs, it is conspicuous that only 26% of people with MND received that sort of care.
Social care has been a matter of much discussion over the past few years and is one that I have spoken about many times in the House. As a former county council leader and a member of the Levelling Up, Housing and Communities Committee, I can say that the situation for sufferers of MND is a reflection of wider social care failings. The complexity of taking care of MND sufferers should not limit their access to services because agencies are reluctant or unable to commit time or money to that service. There is a need for specific support, particularly for respiration, but people with MND try to live their lives as richly as possible and the failings of social care must not hinder that.
Limited specialised care will otherwise continue to contribute to unnecessary danger. Inadequate understanding on how to use equipment, for instance, has left patients leaving hospital with incorrectly attached tracheostomy tubes, resulting in individuals having entirely preventable critical emergency readmissions. In the best-case scenario, the lack of access to skilled social care puts the burden on friends and families; otherwise, it leaves people going prematurely to hospital or to a hospice. The Department of Health and Social Care, which provides 20% of the £50 million that I referred to, clearly needs to recognise the relevance of social care to the conversation. We ask the Government to invest wisely to improve the quality of and access to social care. Those who live with MND need skilled and trained staff.
We are talking about significant sums being invested, but it imperative that the closer-to-home costs of MND are also addressed. Given how aware of finances we are in the current cost of living crisis, it does not take a very significant stretch of the imagination to understand that those with MND are all the more vulnerable to rising energy costs. Indeed, the household costs are double for people with MND, piling on top of already rising costs. The bills that MND sufferers face make very sombre viewing.
It is no surprise that four out of five people with MND consider the impact of the disease to be very negative. Their costs only increase over time as the disease progresses and they rely further on energy-consuming equipment. Inevitably, they spend more time at home fatigued by the disease, which has an energy impact. For those with MND, who have more to deal with than most of us can imagine, that financial uncertainty should be one less thing to have to think about.
I therefore hope that the Government will try to ensure that disability benefits are uprated in line with inflation and that those who live with MND and other disabling conditions receive continuing support with energy costs after the proposed end to the cap scheme in April. I also hope that the Government will increase the emergency support package that they announced in May to ensure that the most vulnerable are supported through the coming winter.
There are a huge array of issues to tackle with MND, simply because of the severity of the disease, but I hope that I have provided a run-through of the issues that need to be considered, especially by the Government. I look forward to colleagues’ speeches.
Order. It will be obvious that we have well under an hour left for this debate. If every Back Bencher takes about six or seven minutes, everyone will have an equal chance to contribute. I hope we can manage without a time limit.
It is a pleasure to follow Andrew Lewer.
Motor neurone disease is a rapidly progressing neurological illness. About 400 people in Scotland and 5,000 people in the UK are living with this terminal condition. In a healthy person, the motor neurones carry signals from the brain directly to the muscles, but motor neurone disease stops signals from the brain reaching the muscles. Over time, muscles weaken, deteriorate and eventually stop working. At present, there is no cure for motor neurone disease, although there are treatments that aim to manage symptoms and improve quality of life.
My first encounter with the disease was when one of my sporting heroes announced that they had received a diagnosis. A landmark study by the University of Glasgow found that the risk of MND among Scottish sports players was 15 times higher than in the general population. The research, which compared 412 former Scotland internationals born between 1900 and 1990 with more than 1,200 non-players of the same age, area and socio- economic status, also found that rugby players—all male —were twice as likely to develop dementia and more than three times as likely to receive a diagnosis of Parkinson’s disease. A 2017 study at the University of Stirling by the same researchers showed direct evidence for short-term sub-concussive changes in the brain following any sport-related impact to the head. The research found that former professional footballers were three and a half times more likely to die from illnesses such as motor neurone disease and dementia than the general population.
Ultimately, MND claimed the life of my sporting hero, the great Jimmy Johnstone, but not before he put up a heroic fight against the illness, helping to educate people on the disease. Knowing that any cure would come too late for him, he campaigned valiantly for stem cell research so that others could get some relief.
These important studies have added to the growing evidence that repetitive head impacts in the sporting arena may lead to an increased risk of neurodegenerative disease, and that it will be even worse in 20 years’ time.
It would be remiss of me not to mention someone who has been a tireless MND campaigner in recent years, the former Scottish rugby player and icon Doddie Weir. Doddie was diagnosed with MND in 2017, and has since set up the foundation My Name’5 Doddie in order to raise funds for research into cures for the disease and to provide grants for people living with the condition. So far he has raised more than £1 million. I am sure all Members on both sides of the House welcome that, and will join me in commending him for it.
I am also sure you agree, Madam Deputy Speaker, that it is only fitting for the UK Government to do Doddie’s legacy justice and reconsider their approach to MND funding. They are currently spending £50 million on MND research, and we in the Scottish National party welcomed the announcement of that in November last year. However, given the increasing impact and prevalence of this disease in our communities, it is surely only right and proper for the Government to outline the progress they have made in allocating the funds. I look forward to hearing what the Minister has to say in that regard.
This becomes even more important because there is optimism—optimism that increased research outputs will translate into discoveries, and those discoveries will ultimately lead to the new treatments and the cure that we all wish to see. Just this week, researchers at the University of Aberdeen found that the same proteins thought to contribute to MND can be found in the gut many years before brain symptoms crop up. Those amazing findings have led researchers to suggest that it could be possible to detect and act on MND long before the brain is affected. Not only would additional funding from the UK Government result in an increase in MND investment, but it might contribute to tackling other neurological diseases.
We cannot allow such diseases to progress. Instead, we as a society must progress, find treatments to help those who are suffering, and then prevent others from suffering also.
Motor neurone disease is an incredibly cruel and scary illness. It can strike anyone at any time. It can knock young and healthy people down in their prime. What makes this disease so frightening is the fear of the unknown. There is no cure for it. We do not know why it occurs. All that makes it even more remarkable that so many brave people suffering from MND find the courage to speak out candidly and publicly about their condition. I pay tribute to all those who campaign so passionately to find a cure, especially those who suffer from the awful effects that the disease causes to them personally. In this debate, however, I want to highlight one particular inspirational person who suffers from MND, and whom I am proud to say I represent as his Member of Parliament in the Scottish Borders.
Long before he was told he had MND six years ago, my constituent Doddie Weir was a hero to people across the Borders and all over Scotland, but he has become even more of a hero since his diagnosis. In his playing days he was a tartan colossus, a giant of Scottish sport. He was a big character on the pitch at Murrayfield—once famously described by the Scottish commentator Bill McLaren as being
“on the charge like a mad giraffe”.
However, Doddie is an even bigger character off the park. He lives his life to the fullest, even now. His positive energy is infectious. When anyone has been around Doddie, they are happier for it. He fought hard every time he took to the rugby pitch, and he continues to fight, even harder, on his mission to find a cure for MND.
I cannot say enough how much I admire Doddie for remaining relentlessly positive, no matter what life throws at him. Receiving an honorary degree earlier this year in Scotland, he said:
“Six years later, still fighting, still pushing for that cure, and still winning with every new day. If things don’t go your way, don’t give up. Instead, use your tremendous energy and brains, try again. There’s always a way round, another way to achieve your goals—find it.”
We owe it to Doddie and everyone in his position to keep fighting for a cure, and we owe it to Doddie to listen closely to his frank assessment of the Government’s funding for research. He said recently that the Government needed to act with more urgency. He said that the fight for a cure was
“definitely getting better but the government has not given MND the money they promised.”
He also said:
“The current process for accessing the money is just not delivering for the MND community. It needs to be streamlined or the professors will spend their valuable time writing multiple applications instead of tackling MND.”
Last year, the Government made a generous and welcome commitment to invest £50 million in motor neurone disease research. I was incredibly proud to play my part in pushing for that funding towards a cure for the devastating disease. That victory, won overwhelmingly by Doddie’s relentless campaigning, was a wonderful display of compassionate government; it is one of the finest actions that this Conservative Government have taken.
But just as Doddie never stopped on the pitch and continues never to stop loving life, we must keep pushing to make sure that this vital funding reaches the frontline faster. Today I want to urge the Government and the Minister to listen to Doddie and do what he asks—not just for his sake, but for every patient in need of some hope. I urge them to provide more resources for MND research, to improve the process and to deliver on our promises. Let us continue to play our part in finding a cure for this awful disease.
It is a real pleasure to speak in this debate. I commend Andrew Lewer for setting the scene so well. I also commend others for their contributions and look forward to those to come from Back Benchers, the shadow Minister and the Minister.
Most of us here will be aware of what MND is: a fatal, rapidly progressive disease that affects the brain and the spinal cord and attacks the nerves that control movement so that muscles no longer work, leaving the sufferer locked in a failing body unable to move, talk or, eventually, breathe, although their mind remains completely intact—a prisoner in their own body. It affects people from all communities, classes and cultures and it is equally devastating to them all. It is a death sentence for too many, killing a third of people within a year and more than half within two years of diagnosis. Six people per day are diagnosed with MND in the UK. It affects up to 5,000 adults in the UK at any one time and kills six people per day—just under 2,200 per year. Currently, it has no cure.
Others have referred to those they have known and to inspirational sportspeople. Back in 2010, before I came here, I was a member of Ards and North Down Borough Council. I had a good friend and colleague—an alderman; we came from different political parties, but worked together on so many things. I was elected here in the May, but met him—I am not going to mention his name—at an event at Portavogie in the September. I said, “You don’t look too well.” He said, “Jim, I’m not well.” When I asked him what was wrong, he told me that he had MND. I visited him as his health deteriorated. I watched an exuberant, energetic gentleman, who was very much aware of what was happening around him, go downhill rapidly. He lasted only slightly over a year. I also remember the impact on his family, who ended up selling the house, which had too many bad memories for his wife and children. They moved on. That is my personal knowledge of how the disease affects people.
I want to comment about Northern Ireland, which is not the Minister’s responsibility so I am not expecting an answer. I will give a perspective of how we do it back home—or perhaps, in this case, what do we not do, although we should.
People with MND in Northern Ireland have a worse standard of care and access to specialist help and support than those in any other part of the United Kingdom. There is a lack of specialists and multidisciplinary care for people with MND in Northern Ireland, where only one part-time specialist neurologist is available. They are available for only one day per month to help people with MND—my goodness! That inevitably leads to longer waiting times for diagnoses of MND and in turn to poorer outcomes and potentially shorter life expectancy post diagnosis. There is only one specialist MND nurse in Northern Ireland, and Northern Ireland is the only part of the UK that does not have an MND care co-ordinator. We fall badly short of what is needed.
The situation for carers in Northern Ireland, both paid and especially unpaid, is a matter of shame. Carers receive almost no support, but they are a vital part of the lives of those living with MND, particularly in light of the current lack of care provision within the NHS in Northern Ireland. For many reasons, including those outlined above, there has been no specialist research into MND in Northern Ireland. People living with MND in Northern Ireland should be offered full and equitable access to MND research.
I am ever mindful that health is devolved, but has the Minister contacted his counterpart in the Northern Ireland Executive to discuss a UK-wide MND taskforce? MND has been overlooked, and that must be reversed. Northern Ireland can gain and learn from what has been done in England, Scotland and Wales.
After months of dedicated campaigning, the United to End MND coalition of patients, charities and researchers won a huge victory in November 2021 with the news that the Government would invest £50 million over five years in targeted MND research. I thank the Minister, the UK Government and the Northern Ireland Executive, as this funding is welcome. The announcement was made by the then Prime Minister on
Since the announcement, the coalition has engaged with both the Department for Business, Energy and Industrial Strategy and the Department of Health and Social Care, and we understand that BEIS will provide 80% of the funds and DHSC will provide the remaining 20%. This is incredible news, and I ask to Minister to confirm it in his response.
Without the funding, the existing system will not support the infrastructure needed for close collaboration between five of our leading universities and 22 research centres. Without this ongoing close collaboration, game-changing progress cannot be realised. How can we better use the universities and that collaboration? Having full, reliable funding over five years, without the need to reapply repeatedly, will free scientists to conduct science, rather than making time-consuming grant applications, as John Lamont said. The funding will also support the retention of key staff, and cash will be released at pre-determined time points, according to the approved work plan.
The challenge posed by the existing system is that the Medical Research Council and the National Institute for Health and Care Research fund grants of up to £2 million at most, and many grants are for far less. The aim of a co-ordinated national approach is to avoid piecemeal efforts that break the united vision of a single co-ordinated UK team working to cure MND.
The Government’s “Life Sciences Vision,” which seeks to establish the UK’s position as a post-Brexit life sciences superpower, refers to building on the
“ways of working from COVID-19 to tackle future disease challenges”.
We learned a lot from how the Government responded to covid-19, and we can use that expertise to research cures and treatments for MND. One of the vision’s missions is:
“Improving translational capabilities in neurodegeneration”.
MND is the neurodegenerative disease that is most ready for translation. MND is a gateway disease to illnesses such as dementia.
We need to address the cost of living issues with a benefit uplift, increased support for unpaid carers and the provision of access to skilled social workers. These are all essential, and they all need ministerial direction. I look forward to hearing from the shadow Minister, who is a dear friend, and the Minister, who has the power to give that direction. People with MND are living in a prison, and we have the ability to open the door and let in some light. I believe we must do that by providing the help they are crying out for.
The issues and concerns about MND were brought back to me in the past few weeks when Jim Hughes, a very prominent local businessman in the community where I live, in Moffat, in my constituency, was taken by the disease. Jim was a larger-than-life character and this just reaffirms that the disease can take anyone.
The disease first came to my attention during the referendum campaign. In the “Better Together” campaign, there was a young man called Gordon Aikman who had worked in the Scottish Parliament for the Labour party and was an important support to Alistair Darling during those activities. Gordon was just in his late 20s and his initial symptoms were very minor—he had a numbness in his fingers, for example. When he went to have some medical examination, he received this dreadful diagnosis. Steven Bonnar mentioned Doddie Weir, as I will, because the disease has often been dwarfed by the courage of those who, like Jimmy, Doddie and Gordon, have been driven to raise awareness of it. Gordon, before he died at only 31, raised half a million pounds, some of it through a dreadful thing—I think my hon. Friend John Lamont will remember—called the ice bucket challenge. People had to appear, often on video, and have a bucket of ice poured over their head. Lord Darling having that done to him was a moment of amusement I will retain.
As well as campaigning, Gordon summoned the strength to give a stark message that, a number of years on, is worth repeating. He said:
“MND is a progressive, neurodegenerative condition that eats away at your body until you can no longer walk, talk, eat or breathe for yourself. There is no cure. Soon it will kill me…It’ll be too late for me, but we can and we must find a cure for the next generation. With your help I can turn a negative into a positive.”
From the experiences that Members have relayed in today’s debate, that is what we want to see the Government do, Minister. We want them to take the negative, and the experiences, passion and fervour of these individuals, and turn that into action.
It has been a huge pleasure for me on a number of occasions to meet Doddie Weir, a giant of a man both on and off the pitch. He has the courage and the ability—I am sure Jimmy Johnstone was the same—to reach out to people who do not necessarily take health seriously and connect. We have heard many discussions in the Chamber about how men, particularly middle-aged and older men, do not take their health seriously, but by working with rugby interests and in communities across the Borders and across Scotland, his My Name’5 Doddie Foundation has been a hugely positive force. For anyone who has not visited its website, let me say that it really is very worthwhile and demonstrates a host of ways in which people can help and become involved. Constituents of mine, such as Hilary Carmichael in Boreland, in Dumfriesshire, who had no personal connection to Doddie have been inspired to campaign locally—to run small events to raise funds. We see that happening across the piece, including to larger organisations such as Peebles rugby football club, which took part in August in the MND big pull weekend. Given all the money that has been raised by Gordon, Doddie and those people who have come to understand and be concerned about the disease, we want to see the Government matching that level of support.
Some of these issues are devolved in Scotland, and the Scottish Government have played a positive part. Indeed, the Euan MacDonald Centre for MND research in Edinburgh is making great strides. There is also research into terazosin, which may be able to slow the progression of MND, and, again, that is to be welcomed, along with the £50 million the Government have already committed and the £375 million for research into neuro- degenerative diseases in general.
However, as Members have indicated, they want to see a vigour and a focus in that research and they want to see the Government playing their part to ensure that we can move, hopefully, towards a cure and a fitting real legacy for people such as Doddie, Gordon, Jimmy Johnstone, and Jim Hughes who have effectively given their life for this disease.
I am grateful to the Backbench Business Committee for arranging this very important debate, and to the hon. Members for Northampton South (Andrew Lewer) and for Newport East (Jessica Morden) for securing it. I am grateful, too, for the thorough manner in which this debate was opened.
This vital issue clearly has cross-party support. I find myself in complete agreement with all the points that have been made from both sides of the House. I, too, have been impressed by Doddie Weir, whom I met last year before speaking in a previous debate. I was taken by his positivity and energy, which was truly inspirational and something that inspires so many.
I will keep my remarks brief as the points have been so well made by earlier speakers. As we have heard, MND seems like a rare disease, but it 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. It is a truly horrible disease. As 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 develops 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 in more than 1,500 people across the UK.
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. All NHS boards in Scotland have a named MND clinical nurse specialist, either employed directly by the board or provided by a neighbouring board through service level agreements. I encourage the UK Government to follow the lead of the Scottish Government in providing universal free prescriptions. Free prescriptions are just one small way that we can help improve the quality of life of those who have been diagnosed with MND while research is still ongoing. Prescription charges, as we know, were abolished in Scotland in 2011, while in England the current charge is £9.35 per item.
Most worryingly, MND is on the increase, and we do not yet know why. The only effective drug available to fight it is called riluzole or Rilutek, which can deliver a small improvement in patients’ overall survival, but it is not a cure and does not stop the condition progressing.
Last year, I spoke at length on this issue when opening the Petitions Committee debate in July. The urgency and potential benefit of dedicated research funding has been well made over a sustained period by many Members here and Members who were in that previous debate. That need is more urgent than ever now.
The research for new therapies requires a truly multi-disciplinary and pan-national approach, spanning the entire translational pathway. Establishing a virtual MND translational research institute, which campaigners have consistently called for, will deliver that. There is no doubt that extra MND research funding from the UK Government is needed to support effective patient treatment and medicines, in the hope that a cure for MND can be found soon. That is what the petitioners in the previous debate and the sufferers of this disease need, and I believe that it is possible. Sufferers simply do not have time to wait for action. They need results now—their life expectancy is, sadly, too short.
I was truly delighted, therefore, when the UK Government announced the £50 million funding specifically for research into MND last November. I have praised them on the record for it before and I do so again today. I am also grateful that we had confirmation only last month that that funding is ring-fenced. However, I would particularly like to know what progress has been made in allocating the funding. Just when will the consultation on the MND partnership result in a tangible plan? Progress on that feels too slow for my liking, so if the Minister could address those points I would be grateful.
I congratulate Andrew Lewer and my hon. Friend Jessica Morden on securing this debate; I thank the Backbench Business Committee for granting it and I welcome the Minister to his place. I also pay tribute to the MND Association, the My Name’5 Doddie Foundation and MND Scotland for their tireless campaigning to improve the lives of people affected by MND.
This has been a short and small, but perfectly formed debate. I particularly thank David Mundell for his kind words of tribute to Gordon Aikman. I also thank the hon. Members for Coatbridge, Chryston and Bellshill (Steven Bonnar), for Berwickshire, Roxburgh and Selkirk (John Lamont) and for Strangford (Jim Shannon), and Martyn Day, who leads for the SNP on these matters.
We know that MND impacts up to 5,000 adults across the whole UK at any one time. Tragically, MND kills one third of people within a year of diagnosis and more than half of people within two years. Many people have experienced the tragedy of motor neurone disease in their own families and communities; I know I am not alone in that. My cousin’s husband tragically died in his late 40s from amyotrophic lateral sclerosis, as it is known in the United States. He and my cousin moved there to live their dream, but sadly the dream was shattered by this dreadful disease.
Last year, my hon. Friend Liz Kendall spoke on behalf of the Opposition in a Westminster Hall debate on MND. She rightly called on the Government to turbocharge investment and reform in MND research, bringing together industry, the public sector and charities to ensure the best possible outcomes for those affected by the condition.
The moral case for investment in research is clear, to help to find treatments to transform the lives of those affected by this condition, but the economic case is just as strong. Treatments in the late stages of MND are up to nine times more expensive than early intervention. Investment into research that enables earlier treatment leads to better outcomes for the NHS and better value for the taxpayer. Investment in MND research also has the huge economic benefit of building on our world-class research and science sector, delivering the high-skilled, well-paid jobs we so badly need.
In November 2021, the Government made a welcome announcement of £50 million of ring-fenced funding into MND research over the next five years. However, almost a year since the promise was made, we still have a long way to go to achieve the progress we need to support those living with MND. Unsurprisingly, given the uncertainty around the future of our economy and the future of our Government, there is also uncertainty about what the future holds for MND and those affected by it.
I will start briefly with the future of MND research. First, when the Minister rises, will he confirm that the pledge of £50 million of ring-fenced money into MND funding is still Government policy? If it is still policy, when will it be delivered? We will support him in turbo- charging that roll-out.
Will the Minister also give assurances about the wider future of R&D spending? As he knows, there are worries in the sector: we are being told that, at the current Chancellor’s forthcoming fiscal event, we can expect cuts to public services and public funding. Should we expect cuts to R&D spending, as many in the science community fear? I hope that is not the case. As the Minister also knows, soaring inflation means that funding counts for less, and the devalued pound means that the cost of the imported equipment and technologies that are crucial to running research laboratories is rising. What assessment has the Minister made of that issue?
Investment in research is crucial to treating MND, but it is not the only thing that matters: if we want to invest in a better future for those with MND, we must also invest in a better future for our NHS and social care system. If we look at the workforce, there are 132,000 vacancies in the NHS and 165,000 vacancies in social care. Given those chronic shortages, it is hardly surprising that, according to the MND Association, more than a third of people with neurological conditions such as MND have reported waiting more than a year between first experiencing symptoms and getting a diagnosis; that only 44% of adults with neurological conditions ever have an appointment with a specialist nurse; and that only 26% of people living with MND receive social care support. Those figures are further proof of the desperate need for a workplace strategy, which this Government have not yet delivered. I hope to impress on the Minister the urgency of that matter. Will the Government listen to the MND Association’s calls for a recovery and respite plan for family carers? As the Minister knows, the enormous stresses that those people are under anyway have been compounded by the impact of the pandemic. Again, if the Government produce such a plan, we will support it.
Finally, providing housing that meets the accessibility needs of people with MND is a vital part of making sure they can maintain their dignity, independence, and the choice to stay in their own home for as long as possible. A guiding principle of Labour’s approach to social care is “home first”, because the vast majority of people want to stay in their home for as long as possible, yet too many struggle to get even the basic support for home adaptations that makes that possible, with a quarter of housing authorities describing their need for accessible homes as severe. Investment and reform in research, the NHS, social care and housing are the steps needed to ensure a better future for those with MND. Labour is committed to delivering that better future, and to supporting this Government to deliver it while they remain in office. Please, let’s just get on with it.
I thank my hon. Friend Andrew Lewer and Jessica Morden for securing this important debate, and thank everyone who has taken part. My hon. Friend the Member for Northampton South has been a fantastic champion for research on this cause. I was grateful for his comprehensive speech, and for the chance to speak to him beforehand. He has given me very clear marching orders.
Steven Bonnar made important points about head impacts in sport, which is clearly a key priority for research, while my hon. Friend John Lamont gave us the inspiring words of Doddie Weir and made the important point that we must simplify funding for researchers. Jim Shannon made a typically compassionate and experienced speech, and made important points about the need for all of us around the UK to learn from each other and the interaction between MND research and research into other diseases. My right hon. Friend David Mundell told us about the inspiring courage of those who have been victims of this terrible disease, but go on to channel that into campaigning for improvements. He also made important points about the need for older people to get themselves checked up, and talked about some of the encouraging research that is happening in Edinburgh.
I was extremely sorry to hear about the terrible personal experiences of the Opposition Front-Bench spokesman, Andrew Gwynne. To answer some of his questions directly at the start, that £50 million is still absolutely Government policy. He was completely correct to highlight the importance of social care, hence our announcement the other day of an extra £500 million for social care.
I pay tribute to all those impacted by MND who dedicate their time to campaigning for a better future, including those involved in the “United to End MND” campaign and the My Name’5 Doddie Foundation. There is a lot that we must be grateful to them for.
MND is a brutal condition. We have heard throughout the debate about the devastating impact on people and their families. We have made great strides in research, but we still do not know exactly what causes motor neurones to die off. I echo the sentiment expressed in the House: we must move fast for people living with MND now and those who will be diagnosed in future. We need a better scientific understanding of the causes and mechanisms of MND, and we need to ensure that we are delivering the highest-quality care and support for those living with it and their families.
I will now talk about how we are supporting people living with MND and then talk about research. People living with MND need treatment and support to ease their symptoms and maintain their independence for as long as possible. As such, NHS England has set out that all services for patients with MND should be specialised, commissioning the specialised care that those patients may receive from 25 specialised neurological treatment centres across England. That includes the prescribing of complex communication devices, to enable people with MND to communicate as effectively as possible; offering non-invasive ventilation to support respiratory function; and compassionate personal care and support that meets people’s individual needs.
In 2019, the National Neurosciences Advisory Group published a toolkit for improving care for progressive neurological conditions, including MND. That toolkit is helping commissioners to make improvements to pathways for people with MND, enabling quicker and more accurate diagnoses. It also helps to commission services that are co-ordinated, flexible and responsive to the rapidly changing needs of the patient, with improved choice in end of life care for people with MND. That will ensure that people with MND receive the best possible care.
We know we need to get things right for people living with MND and other neurological conditions. That is why we are delivering the neuroscience transformation programme, which will support services to deliver the right service at the right time for all neurology patients closer to home. NHS England has appointed a national clinical director for neurology, who will provide national leadership and specialist clinical advice, and an announcement on that is expected imminently.
Through research, we are making major advances in understanding and treating the disease and funding world-class researchers across many of our universities in the UK. We are seeing real progress, and there are many reasons for optimism. The Medical Research Council invested £10.3 million in MND research in 2020-21, supporting vital research to increase understanding of the causes and genetic mechanisms of MND. At the UK Dementia Research Institute, scientists are investigating the root causes of amyotrophic lateral sclerosis, or ALS—the most common form of MND—and identifying ways to protect brain cells from damage. Earlier this year, the researchers developed a test to detect abnormal protein in the brain. This protein causes 40% of familial ALS cases—that is, ALS that occurs in more than one family member. That highly sensitive test is now being used in a clinical trial to assess the effectiveness of a new treatment for ALS.
At the Francis Crick Institute, researchers are working with stem cells to investigate the molecular processes that cause MND. That research is identifying what may go wrong with neurones, to find ways to treat the underlying disease mechanisms. The National Institute for Health and Care Research translates scientific breakthroughs into treatments that will benefit patients. The NIHR spent £3.2 million on MND research last year, supporting research on care and quality of life, as well as trials of new therapies. Researchers at NIHR’s biomedical research centre in Sheffield have pioneered evidence-based interventions to manage the symptoms of MND. For example, many people with MND struggle to consume sufficient calories, even though there is evidence that eating a high-calorie diet may improve survival. Researchers are developing nutritional interventions to support people with MND in eating a high-calorie diet, which may enhance their quality of life.
The NIHR is also supporting trials of potential new therapies to treat the underlying disease. One study under way is the Lighthouse 2 study, which will test the effectiveness of Triumeq, a repurposed drug from the treatment of HIV, in improving survival rate, function and quality of life for people with MND. In September, NIHR-funded scientists reported findings from a phase 3 trial of the drug tofersen. The trial showed that the drug can slow and reduce progression of the disease in patients with MND caused by the faulty SOD1 gene.
During the debate, we have heard about the need for greater investment in MND research. We have already talked about the £50 million that we are investing over the next five years, and that commitment was reaffirmed in September and again today. That money is available to apply for now from the NIHR and UKRI, and officials continue to work closely with the MND research community and those in aligned scientific disciplines to ensure that the scientific ambitions for MND research can be realised.
In June, we launched a new £4.25-million collaborative partnership, which is jointly funded between Government and charity partners, to bring the MND research community together. That partnership will be led by Professors Ammar Al-Chalabi and Chris McDermott. I know that they and the patient group that has been campaigning for greater investment in MND research are optimistic about the opportunities that the new partnership will provide. Some of its key aims are: to develop better ways to clinically measure MND progression, to develop a bank of human cell models on which to test new therapies, and to improve MND registers so that doctors can collect detailed, high-quality data about the disease. We also launched an NIHR highlight notice on MND to signal to the research community that MND is a priority area and to invite ambitious research proposals from all researchers working in MND and aligned scientific areas.
I am sympathetic to researchers who want to minimise the number of applications that they have to make to secure funding, which is why, during the summer, officials from the Department of Health and Social Care, the Department for Business, Energy and Industrial Strategy, the NIHR and the Medical Research Council met researchers linked to the United to End MND campaign to discuss how the MND research community could effectively access funding through a smaller number of focused applications. The NIHR and the MRC look forward to seeing those applications when they come in and to talking more about how we simplify things.
I personally welcome the opportunity to meet some of those researchers in due course to discuss their progress and how we can further streamline funding and avoid wasting researchers’ time with lots of applications for small penny packets of research funding. That is an important priority in research across the piece, but it is more important in this area than anywhere else, because the research is so urgent and there are many people desperate to see progress. I am keen to meet those researchers and take that forward.
Motor neurone disease is a priority for the Government. I am encouraged that we are seeing progress in research. We will continue to invest in MND research and work with charities, the research community, and people with MND and their families to build on the successes and deliver breakthroughs for people living with MND now and in future.
I thank all hon. Members who have spoken in this debate—I will not name them because I do not want to miss anyone—for their powerful speeches and for being here. It illustrates the importance of the work of the all-party parliamentary group, which provides an opportunity to work together and put political differences to one side for the benefit of our constituents. We know about dashing around for APPGs and emailing people to get them to turn up, but I never have to do that for the APPG on motor neurone disease; we always pack the room when we have a meeting.
The Minister has listened closely to the debate and the contributions of hon. Members, including the Front Benchers. His comments have been very encouraging, especially about getting to grips with red tape. He also made reference to the Francis Crick Institute—Francis Crick was, of course, a Northampton man.
“Moonshot” is the word used for MND research, but the genetic breakthroughs that I spoke about earlier mean that we now know where the moon is and we have a good idea how to get there. That £50 million can help us to achieve a cure for MND, but we need more haste in getting launched and onwards to the dream. What we have heard today has been really encouraging in that regard.
I thank all those at the MND Association for all their hard work and support over the years for me, and for the contribution that other key charities, such as MND Scotland and My Name’5 Doddie Foundation, make towards this work. That led to United to End MND, which has really punched through, as I described in my speech earlier.
This debate has focused on those who suffer from MND and their tremendous courage in facing something that none of us wants to face. We can hardly imagine the severity and experience of those who go through it and those who care for them and love them. I hope that we have demonstrated today that we take those suffering seriously and we take the inspiration that they provide us with seriously. It is a tribute to those who care for them that we are all so determined to help to find a way forward for people so that they do not have to suffer in that way in future.
Question put and agreed to.
That this House
has considered the matter of investing in the future of Motor Neurone Disease.