Motor Neurone Disease (Research)

Judith Cummins Excerpts

Monday 12th July 2021 Westminster Hall

[Judith Cummins (in the Chair)]

I remind hon. Members that there have been some changes to normal practice in order to support the new hybrid arrangements. Timings of debates have been amended to allow technical arrangements to be made for the next debate. There will also be suspensions between debates. I remind Members participating physically and virtually that they must arrive for the start of debates in Westminster Hall. Members are expected to remain for the entire debate.

I must also remind Members participating virtually that they must leave their camera on for the duration of the debate, and that they will be visible at all times, both to one another and to us in the Boothroyd Room. If Members attending virtually have any technical problems, they should email the Westminster Hall Clerks at [e-mail]. Members attending physically should clean their spaces before they use them and as they leave the room. I also remind Members that Mr Speaker has stated that masks should be worn in Westminster Hall.

[Martyn Day (Linlithgow and East Falkirk) (SNP) [V]]

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”.

It seeks

“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.

[Judith Cummins (in the Chair)]

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.