“Businesses go down every year but these people are dealing with people’s lives and my life matters.”
MND sufferer Mark Sommerville and his wife Erika
Scotland’s leading motor neurone disease charity is fighting for survival after the exit of its CEO and massive staff cuts – with campaigners blaming mismanagement at the top.
Mark Sommerville, 44, who was diagnosed with the incurable disease two years ago, has accused MND Scotland of letting down sufferers.
The charity was plunged into turmoil last week, with all staff put at risk of redundancy and those who remain set to have their salaries cut to 80 per cent of their current level.
It follows the sudden departure of CEO Rachel Maitland in September – followed swiftly by chairman of the board of trustees Adrian Murphy early this month.
Both were appointed in 2021. Annual accounts show, as of 2024, the charity is in deficit of nearly £1.4million – up from £188,000 four years ago.
Mark Sommerville with his family.(Image: UGC)
Activist Mark, from Uddingston, Lanarkshire, who previously won praise from Keir Starmer for his campaign to boost MND research, hit out: “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.
“I honestly feel they don’t care. For them [the CEO and the chairman] to just leave without explanation speaks volumes.”
The dad of four 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.”
Mark – who married his partner of 22 years Erika last year and is father to Olivia, 12, and Cole, eight – was originally told he might only live for 18 months after his diagnosis which came following pulses in his arm. The 44-year-old has since lost use of his hands from the debilitating muscle-wasting condition.
Last year, Mark married his partner of 22 years Erika
It’s feared the charity cash crisis could put its services for patients and their families, such as financial support and free counselling, at long-term risk.
As of this month, a system of grants MND Scotland offered to sufferers to improve quality of life, make home modifications and help with living costs has been “paused”, according to its website. MND Scotland told the Sunday Mail its wellbeing grants, which are delivered in partnership with My Name’5 Doddie Foundation have all been delivered for the 2025-26 financial year.
We previously told how Mark set up his own charity, the Mark Sommerville Foundation, to help fund research of treatments and a potential cure, raising tens of thousands of pounds.
It comes after the My Name’5 Doddie Foundation – established in honour of late Scots rugby star Doddie Weir who died in 2022 after a battle with MND – last week urgently demanded a fresh injection of research funding by ministers.
Former England rugby captain Lewis Moody is the latest figure from the sport to be diagnosed with MND. Yesterday it was revealed a fundraiser for the 47-year-old had already raised £150,000.
Doddie Weir
Rugby star Lewis Moody has been diagnosed with MND (Image: ITV)
An spokesperson for MND Scotland said: “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. The support we provide to people living with this disease, and their families, is not available through statutory support and is not provided by any other charity.
“While we undoubtedly face a challenging time, we are passionate, committed and determined to continue for the MND community in Scotland that needs us.
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“In 2024/25, MND Scotland supported 96 per cent of people with MND in Scotland. Our team of advisors provided personalised assistance, helping people to maximise their income and generating £1.4million for people affected by MND.
“We provided over £586,000 in grants to individuals and 1560 hours of counselling.”
Scotland’s charities regulator OSCR said: “We are currently engaging with MND Scotland in line with our standard policies and procedures to understand their current situation.”