Rob Burrow says government has 'blood on its hands' over delays to MND funding

Rob and Lindsey Burrow
Rob and Lindsey Burrow are campaigning for funding for research into MND. Credit: PA

Rugby league legend Rob Burrow says the Government has "blood on its hands" over delays in funding for motor neurone disease (MND) research.

The former Leeds Rhinos and Great Britain player, 39, has become a leading light in the campaign to raise awareness of MND, after he was diagnosed with the terminal illness in December 2019.

The government pledged last November to make £50million available to the Motor Neurone Disease Association as part of a £375million investment into neurodegenerative disease research but, eight months on, scientists have yet to see the money.

Burrow told the PA news agency: "I have 100 things to say to this Government but I will keep it to one.

"People with MND don't have the luxury of time to wait. It is as if there is no rush to give our scientific researchers the opportunity to join the race to find an effective treatment while six people die each day from motor neurone disease.

"There is blood on your hands, this Government and the civil servants, with the red tape you are putting up."

Rob Burrow with his children

Burrow's stance is supported by his wife and full-time carer Lindsey, who said: "I am hopeful that one day a cure will be found but we need the UK Government to support people with MND and provide more funding for research into the disease.

"In September 2021, the Prime Minister and Health Secretary pledged £50million for research but no money has been received by the MND researchers yet.

"A third of people with MND die within a year of diagnosis and don't have time to wait."

Burrow's comments come after his father, Geoff, said his family had been left "frustrated" by delays in fulfilling a pledge made by Boris Johnson last November.

But after recent soundings from the government, said he was "hopeful" funding was on its way.

A spokesperson for the Department of Health and Social Care said: "We have invested millions of pounds into motor neurone disease research - leading to major advances in how the disease is understood.

"For example the funding has supported clinical trials of a repurposed drug, Triumeq, which has shown promise at reducing a type of virus in the brain thought to kill motor neurons.

"We remain committed to spending at least another £50million to help find a cure and researchers can apply for funding at the National Institute for Health and Care Research and UK Research and Innovation."

Burrow, who was given two years to live at the time of his diagnosis, says his condition has not worsened since he started taking an immunotherapy drug used in clinical trials for various types of cancer.

"I've been using proluekin in the form of IL-2," he said. "I've been on this drug for almost two years and I have not got any worse since I have been on this cancer drug."

Burrow and his former captain Kevin Sinfield have spearheaded fundraising.

Burrow has provided an update on his battle with MND in a new chapter of his autobiography, Too Many Reasons to Live, which is now out in paperback, and has maintained his famous sense of humour despite being confined to a wheelchair and being able only to speak with the aid of voice technology.

"I've been this way for 18 months now and I have got used to being like this," he said. "I have been a professional box-set watcher."

With close friend Kevin Sinfield, the former Leeds and England captain, Burrow recently completed the Leeds 10k in a specially adapted wheelchair to raise money for the Leeds Rhinos Foundation and the Rob Burrow Centre for MND.

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