Motor Neurone Disease

Martyn Day Excerpts

Thursday 20th October 2022 Commons Chamber

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

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.