Lanarkshire Father Criticizes MND Charity Over Leadership Crisis

A significant leadership crisis has emerged at Scotland’s foremost motor neurone disease charity, MND Scotland, following the sudden departure of its CEO, Rachel Maitland, in September 2023. The situation has intensified with reports of major staff reductions and accusations of mismanagement at the organization’s upper echelons.

Mark Sommerville, a 44-year-old father from Uddingston diagnosed with motor neurone disease (MND) two years ago, has publicly condemned the charity for its handling of the situation. According to the Sunday Mail, staff at MND Scotland have been placed at risk of redundancy, while remaining employees may see their salaries reduced to 80 percent of their current pay.

The leadership upheaval follows Maitland’s exit, which was quickly followed by the resignation of Adrian Murphy, the chairman of the board of trustees. Both individuals were appointed in 2021. Financial records reveal that the charity is currently facing a deficit of nearly £1.4 million, a drastic increase from a deficit of £188,000 four years prior.

Sommerville, who has received accolades for his advocacy work in MND research, expressed his frustration, stating, “This is mismanagement at a high level at MND Scotland. Businesses go down every year, but these people are dealing with people’s lives, and my life matters.” He added, “The only people that are going to lose out here are people dying with a horrible disease. I might be dead in six months.”

The father of four, who married his partner of 22 years, Erika, last year, has faced significant challenges since his diagnosis. Initially told that he might only live for 18 months, he has since lost the use of his hands due to the debilitating effects of MND.

Concerns are mounting that the charity’s financial difficulties could jeopardize crucial services for patients and their families. Notably, a system of grants aimed at improving quality of life, assisting with home modifications, and covering living costs has reportedly been “paused,” according to information from MND Scotland’s website.

Despite the turmoil, MND Scotland maintains that it remains committed to supporting those affected by the disease. A spokesperson stated, “We share the MND community’s frustration that there are currently no meaningful treatments or a cure. MND Scotland was founded to support everyone affected by MND across the country.” They also noted that the charity supported 96 percent of individuals living with MND in Scotland in the 2024/25 period.

The spokesperson added, “Our team of advisors provided personalized assistance, helping people to maximize their income and generating £1.4 million for people affected by MND.” Furthermore, they highlighted that over £586,000 had been distributed in grants, alongside providing 1,560 hours of counselling.

This crisis comes on the heels of growing calls for increased funding for MND research. The My Name’5 Doddie Foundation, established in memory of late rugby player Doddie Weir, who succumbed to MND in 2022, demanded urgent government support for research initiatives last week. The foundation highlighted the need for renewed investment as former England rugby captain Lewis Moody has recently been diagnosed with MND, prompting a fundraiser that has already raised £150,000.

Scotland’s charity regulator, the Office of the Scottish Charity Regulator (OSCR), has confirmed that it is currently engaging with MND Scotland to understand the organization’s situation better.

As the charity navigates this challenging period, the implications for those affected by MND remain critical. The ongoing situation raises pressing questions about the future of support services and the overall mission of MND Scotland to aid individuals and families grappling with this devastating disease.