Motor Neurone Disease

Jim Shannon Excerpts

Thursday 20th October 2022 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

It is a real pleasure to speak in this debate. I commend the hon. Member for Northampton South (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 14 November 2021, and £50 million was the exact figure requested by the coalition’s submission to the 2021 spending review for the establishment of a virtual MND research institute to initiate a comprehensive five-year plan specifically for translational MND research to accelerate the discovery of treatments for this devastating disease. It is really good news that something like this is coming from the Government.

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 the hon. Member for Berwickshire, Roxburgh and Selkirk (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.