Using the words of her husband, Motor Neurone Disease sufferer Rob Burrow, his wife Lindsey says the government will have “blood on its hands” if it does not dedicate more funding - and quickly - to the disease.
Yesterday, the Daily Mirror supported calls for both former Rugby League superstar Rob, 40, and his friend and ex-teammate Kevin Sinfield, 42, to be knighted for their joint crusade to raise crucial awareness and funds for MND research and care.
Responding this morning, Health Secretary Steve Barclay praised their “remarkable characters”, adding the government had committed £50million to the cause and work was under way.
But the sum was first pledged in 2021 and last year Rob called for its distribution in the face of “red tape” delays. Now, Lindsey believes although over half has been allocated, it has still not fully been distributed although “researchers are waiting”.
The 40-year-old, who is a full-time carer for Rob, first diagnosed with MND in 2019, said it was a “good start” but the delays left she and Rob angry and frustrated, especially after seeing the speed Covid vaccine research was funded by comparison.
She said: “To use Rob’s words, the government has got blood on their hands because MND patients don’t have time to wait. If you look at the statistics, a third of people will die within a year.
“They need the research and the funding now - we need to get on with finding some form of effective treatment and a cure for the disease.
“It is frustrating - they have made that pledge and you hope they keep their promise and deliver. You feel quite angry, why is there no treatment or cure?
“The £50million is a great start but they need more funding from the government and backing from pharmaceutical companies to keep the momentum going.”
Last year, Rob urged the government to commit the £50million promised to MND research, saying: “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.”
Lindsey added: “It’s really hard to watch someone who was well and active deteriorate to a point where just scratching their nose is now impossible. It’s devastating, and it’s really hard to watch him go through that - and the effects it has on the whole family.
“To just have something to slow down the progression, to give people more time, MND sufferers would take anything.
“Look at the Covid vaccine, all the funding that went into that, we have researchers there and waiting, we just need that funding, it’s crucial.”
Speaking on BBC Breakfast this morning in response to the Mirror’s calls for knighthoods, Mr Barclay said: “As a health secretary and a rugby fan I think what they have both done is amazing, I think they are both remarkable characters.
“They are inspirational figures and what they have done for the MND community is absolutely remarkable. We have responded as a government… The government has committed £50million and has been working with researchers on this. I think their campaign is absolutely inspirational.”
Lindsey continues to work one day a week as a NHS physiotherapist while providing full-time care for Rob and caring for their three children, Macy, 11, Maya, eight, and Jackson, four.
Her devotion to Rob, who she met aged just 15, is captured in a moving new ITV documentary, Lindsey and Rob: Living With MND, to be shown tomorrow night at 8.30pm.
Rob retired from professional sport in 2017, less than two years before his devastating diagnosis, and was initially told he had two years maximum to live.
He has now lost all voluntary movement and the ability to speak, and Lindsey carries him around their home.
He and Kevin have joined campaigners to push for greater investment in MND to find treatments and a cure, raising millions between them for the cause.
Last month Kevin ran the Leeds Marathon pushing Rob around the track and finally carrying him over the finish line. The powerful image of friendship moved people across the country.
Kevin has raised around £8million through incredible sporting challenges since his friend’s diagnosis.
Backing calls for Kevin to receive a knighthood, Lindsey said: “He is an incredible, selfless, extraordinary person who has gone above and beyond for his friend and the MND community.”
Rob and Kevin’s fellow former Leeds Rhinos teammate Jamie Peacock has also backed calls for the knighthood.
The former Great Britain captain said: “I would love Kev to be awarded a Sir, he more than deserves it given everything he has put himself through and what he’s managed to do to raise money for MND, and set it on the course to getting closer to finding a cure.”
Some are angry protocol may be blocking the move, as Kevin received an OBE last year and rules say he may have to wait four more years before receiving the honour.
No Rugby League player has ever been knighted.
Lindsey added: “He has given families hope. We hope in the future when people are diagnosed, the diagnosis will be followed up with ‘but we have this treatment’ - and ultimately, that there will be a cure. Kev has had the drive to change that for patients, to change their future.
“He has helped Rob hold onto that hope, too.”
A Department of Health and Social Care spokesperson said: “We are determined to improve the lives of people with MND and congratulate Rob and Lindsey Burrow for their incredible fundraising and awareness work.
“Since 2017/18, we’ve spent over £74 million on MND research and we’re speeding up research to find a cure by accelerating £29.5 million of the £50 million government funding for MND to be invested through specialist research centres. The remaining £20.5 million will be allocated through an open call and we encourage more applications from researchers.”
* Lindsey and Rob: Living with MND airs tomorrow night on ITV at 8.30pm
