Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps he is taking to support patients with motor neurone disease.

At the national level, there are a number of initiatives supporting service improvement and better care for patients with motor neurone disease (MND), including the Getting It Right First Time Programme for Neurology and the RightCare Progressive Neurological Conditions Toolkit. NHS England has also established a Neurology Transformation Programme, a multi-year, clinically led programme, which has developed a new model of integrated care to support integrated care boards to deliver the right service, at the right time, for all neurology patients, including those with MND.

We have set up a United Kingdom-wide Neuro Forum, facilitating formal, biannual meetings across the Department, NHS England, the devolved administrations and health services, and Neurological Alliances of all four nations. The new forum brings key stakeholders together, to share learnings across the system and discuss challenges, best practice examples, and potential solutions for improving the care of people with neurological conditions, including MND.

NHS England commissions the specialised elements of MND care that patients may receive from 27 specialised neurology centres across England. Within specialised centres, neurological multidisciplinary teams ensure patients can access a range of health professionals and specialised treatment and support, according to their needs.

Government responsibility for delivering MND research is shared between the Department of Health and Social Care, with research delivered via the National Institute for Health and Care Research (NIHR), and the Department for Science, Innovation, and Technology, with research delivered via UK Research and Innovation. Government funders are continuing to invest into MND research. For example, investing £12.5 million to support the best discovery science in MND at the UK Dementia Research Institute, £6 million of Government funding for the MND Translational Accelerator, which is seeking to speed up the development of treatments for MND, and an £8 million investment into EXPERTS-ALS, which screens for drugs that have the potential to be successful in clinical trials for people with MND.