Motor Neurone Disease

Andrew Gwynne Excerpts

Thursday 20th October 2022 Commons Chamber

[Andrew Gwynne (Denton and Reddish) (Lab)]

I congratulate the hon. Member for Northampton South (Andrew Lewer) and my hon. Friend the Member for Newport East (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 the right hon. Member for Dumfriesshire, Clydesdale and Tweeddale (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 the hon. Member for Linlithgow and East Falkirk (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 the Member for Leicester West (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.