Statement from PatientsUnited2EndMND following the Budget 27/10/21

Please note, this IS a disappointment, but we are confident government is taking notice and looking at ways to help us. Keep tuned here for further updates

We are disappointed that our submission to the spending review for a £50 million investment over five years into a virtual MND Translational Research Institute was not accepted. We believe this would have been the quickest and most efficient way to accelerate the current promising progress that our scientists are making towards the first-ever meaningful treatments for this brutal condition. It would have attracted considerable investment into the UK from the major pharmaceutical companies, in line with the government’s ambition for the UK to be a ‘scientific superpower’.

We continue to challenge the government’s considerable overestimation of spending on targeted research for MND via BEIS/MRC and DHSC/NIHR. It is only through a thorough examination of the publicly available data that Ministers and their advisers will come to an understanding of the current low funding of around £5 million per year as opposed to the claims of around £15 million.

A positive response would have offered hope to thousands in the UK who are affected by MND, whether as a patient, family member or friend.

However, we are encouraged by the continuing statements made by the Prime Minister, his Ministers, MPs and their advisers which suggest that they really are seeking ways to solve our issue which, essentially, is that current government funding mechanisms are too fragmented, inefficient and simply do not work for the current status of MND research.

We are calling for an immediate renewed focus on these efforts. We simply cannot wait for the 200,000+ people alive in the UK today, yet to be diagnosed, who WILL die from MND without meaningful treatments and ultimately a cure.