My View: Motor Neurone Disease and the Recent APPG Meeting on Improving Access to Care

Thank you to everyone who got in touch with me to let me know about the most recent meeting of the Motor Neurone Disease APPG. Whilst I was unfortunately unable to attend, I did want to outline my thoughts on MND and what we can do to improve research into this horrific disease. I sympathise deeply with all those living with motor neurone disease (MND) or supporting a loved one, and have experience myself of how awful this disease really is. We must improve care for people with neurological conditions and ensure they receive the treatment they need.

I’m aware that our Government has recently met with the Motor Neurone Disease Association to discuss a range of issues, including access to tofersen. Although tofersen has been approved by the Medicines and Healthcare Products Regulatory Agency (MHRA), guidance from the National Institute for Health and Care Excellence is still in development.

The manufacturer of tofersen, Biogen, has established an Early Access Programme (EAP) for people diagnosed with SOD1 amyotrophic lateral sclerosis who meet certain inclusion and exclusion requirements. An EAP allows early access to new medicines which have been licensed by the MHRA but do not have NICE guidance in place. Participation in these programmes is decided at an individual NHS trust level.

Under EAPs, the cost of the drug is free both to patients taking part in it and to the NHS, though NHS trusts must still cover the costs of administering the medicine. Many NHS hospitals have been able to identify the extra staff and resources needed to take part in the EAP and safely provide tofersen to as many eligible patients as possible.

Alongside supporting access to treatments, our Government is funding MND research in different areas. I note that work is under way to improve care for patients with motor neurone disease through initiatives like the Getting It Right First Time Programme for Neurology and the RightCare Progressive Neurological Conditions Toolkit. NHS England is also developing a new model of integrated care so that neurology patients receive the right service at the right time.

I know that our Government recognise the importance of timely home adaptations, especially for individuals with rapidly progressing conditions like MND. Local authorities have a statutory duty to provide adaptations for people who satisfy a needs assessment, eligibility criteria and a means test, and have powers to agree a more generous local policy. To support this duty, I am pleased that funding for the Disabled Facilities Grant has been increased by £86 million per year to £711 million for both 2024-25 and 2025-26. It will increase again in 2026-27.

Please be assured I will monitor developments as NICE continues its evaluation of tofersen, and thank you again to everyone who brought this important issue to my attention.