Report of meeting with Care Minister Gillian Keegan

26th April

Representatives of the United2EndMND coalition (MND Association, MND Scotland, My Name’5 Doddie Foundation, researchers and patients) met with Gillian Keegan MP (minister for health and social care), Steve Baker MP, Andrew Lewer MBE MP and senior DHSC civil servants on 26 April in Parliament. The meeting was setup to push forward on the processes for applying for £50m pledged by the PM and SoS Sajid Javid in November 2021 for a new mission to fight MND.

The coalition has been liaising with various government departments on the need for a single application for the 5-year plan proposed to the spending review in October 2021. A pilot project with the medical research charity, LifeArc, totalling £4.25 million (consisting of £3.25m of charity funding and just £1m of government funding) has been under peer review since January 2022. The review by an international panel of eminent scientists fully supported this project. It was anticipated that this project would become the implementation vehicle for the additional government investment of £50m for the mission.

The main task was to seek an agreement that this project would be the model and effective recipient of the mission funding. At the meeting officials raised issues about this approach. We are seeking to resolve these with a further meeting on May 10 with officials from the DHSC and BEIS and members of our researcher community.

We will further update the MND community as soon as possible. It is our firm intention to seek to ensure the delivery of the funds to enable the rolling out of the 5-year scientific plan as soon as possible in 2022.

Patientsunited2endMND