Motor Neurone Disease (Research)

Anum Qaisar Excerpts

Monday 12th July 2021 Westminster Hall

[Anum Qaisar-Javed (Airdrie and Shotts) (SNP) [V]]

It is a pleasure to serve under your chairship, Ms Cummins. I welcome the petition and thank each and every person who signed and shared it. This is democracy in action.

I reiterate the comments made by my hon. Friend the Member for Linlithgow and East Falkirk (Martyn Day) that extra research funding is essential to support patient treatment and medicines in the hope that a cure for MND can be found soon. The work carried out by organisations and charities such as the MND Association and MND Scotland has ensured that MND research is rightly at the forefront of political debate. I also reiterate the comments made by my colleague the hon. Member for Berwickshire, Roxburgh and Selkirk (John Lamont) that the work done by the My Name’5 Doddie Foundation goes beyond the constituency that he represents and where Doddie lives.

It is important to acknowledge that 1,100 people across the UK have been diagnosed with MND. It is thought that diseases related to motor neurones affect approximately 5,000 adults at any one time. Today, we have heard colleagues from across the political spectrum unite. Every one of us has gained an understanding of how debilitating MND can become. While research into this life-limiting illness continues, we recognise that additional funding is required to further advance the ambitions of experts who believe that getting a cure is becoming closer than ever.

As the hon. Member for Edinburgh West (Christine Jardine) stated, the numbers are frightful. After developing symptoms, most people with MND will die within two to three years. About 25% of people live beyond five years, and that reduces to 10% at 10 years. Additional funding for research will be vital to extend life after diagnosis and improve quality of life by slowing the disease’s aggression.

Although today we are discussing research and funding, they cannot be seen as isolated factors. There are clear links between research and investment in palliative care standards to improve the quality of life of those with MND while research continues to develop. As the hon. Member for Wycombe (Mr Baker) said, we need progress and targeted support.

On a personal level, I remember scrolling through Twitter back in 2014, in the middle of a hotly contested referendum on Scottish independence, and seeing politicians united in their support for MND research. Gordon Aikman, the director of research for the Better Together campaign, who had previously worked for the Labour party, was diagnosed with MND. I pay tribute to him because I was always in awe of him. I never knew him and had never met him, but I always felt a strong sense of resilience from him. His campaign was fearless and forceful, and was exactly what was needed to put MND high on the agenda. He championed more investment, research into MND and general awareness of the disease.

Campaigns have been absolutely vital in raising awareness of MND. The Scottish public raised £500,000 in the ice bucket challenge, through which more than £7 million was raised in the UK and more than $100 million worldwide. Such challenges may seem trivial, but their impact is profound. As well as raising incredible sums of money, they generate awareness. That is commendable, but we cannot rely on the generosity of the public and internet trends to ensure that the UK leads the way in pioneering research into devastating diseases.

In Scotland, the Scottish Government are committed to ensuring that neurological patients can access the care, support and information they need, and that they can understand their condition following diagnosis. Between 2015 and 2018, they committed more than £700,000 to research for motor neurone disease. Additionally, in 2019, about £400,000 was invested over three years to fund two postdoctoral posts at the UK Dementia Research Institute at the University of Edinburgh to research and develop new treatments for MND.

Recent University of Edinburgh research found a problem with MND patients’ nerve cells, which could be repaired by repurposing drugs approved for other diseases. It found that the damage to nerve cells caused by MND could be repaired by improving the energy levels in mitochondria—the power supply to the motor neurons. In fact, it discovered that in human stem cell models of MND, the axon—the long part of the motor neuron cell, which connects to the muscle—was shorter than in healthy cells, and that the movement of the mitochondria, which travel up and down the axons, was impaired. The scientists showed that that was caused by a defective energy supply from the mitochondria, and that boosting the mitochondria caused the axon to revert to normal. Although the research focused on the people with the most common genetic cause of MND, the researchers said that they were hopeful that the results would also apply to other forms of the disease. The results of the study are now being used to look at existing drugs that boost mitochondrial function.

The hon. Member for York Central (Rachael Maskell) spoke about an international approach to tackling MND. The results from the University of Edinburgh show what can be achieved in a single research centre. The MND research strategy now needs to move beyond single centres and small collaborations that answer narrow research questions towards a large-scale, co-ordinated approach to tackle every aspect of the translational pathway, with the multi-disciplinary expertise available nationally and internationally, and rapidly find and develop new effective therapies for MND. As my hon. Friend the Member for Linlithgow and East Falkirk stated, the search for new therapies requires a truly multidisciplinary, pan-national approach spanning the entire translational pathway. Establishing a virtual MND translational research institute, which the petitioners have called for, will deliver that. We must also note that researchers have developed a line of thinking that suggests that delivering a cure for one neurological disease may in fact make possible effective treatment for others. This is because the disease processes are closely linked. As the hon. Member for Rochdale (Tony Lloyd) has said, not only would additional funding from the UK Government result in an increase in MND investment, but it may contribute to tackling other neurological diseases. Does the Minister recognise this, and will she commit to action and not simply words?

The UK Government should follow the lead of the Scottish Government on universal free prescriptions. Although we are specifically discussing research and investment, we must also bear in mind that around one in every 300 people, across all communities, will develop MND in their lifetime. It is not an age-specific illness, and people will experience different circumstances in the early stages of MND. The Government support available must not systematically target those who have this debilitating illness. Free prescriptions are just one way that we can improve the quality of life of those who have been diagnosed with MND while research is still ongoing. Will the Minister commit to considering that?

There is no doubt that extra MND research funding from the UK Government is needed to support effective patient treatment and medicines, in the hope that a cure for MND can be found soon. As the hon. Member for Worsley and Eccles South (Barbara Keeley) noted, over the last year we have poured money into the pandemic response and, as we look forward, additional funding into MND research will transform people’s lives.

I conclude by noting that Members today have contributed in an eloquent manner. Many have spoken from personal experience, including the hon. Member for Liverpool, West Derby (Ian Byrne) and for Southend West (Sir David Amess) and the right hon. Member for Hayes and Harlington (John McDonnell). I therefore hope to hear a positive contribution from the Minister and an actual commitment from the UK Government to help to transform MND research.