Red tape cut to clear the way for Motor Neurone Disease research

Neurologists now have a way of applying for £50million of funding

PETITION: United To End MND campaigners went to Downing Street in September last year to seek £50m (Image: Jonathan Buckmaster)

After weeks of tough talks with MPs and civil servants, neurologists now have a way of applying for £50million of funding which they are positive will allow them to focus on finding effective treatments for the rapidly progressing terminal condition.

Prime Minister Boris Johnson and Health Secretary Sajid Javid gave thousands of people living with MND hope last November, by committing the money over five years for targeted research to find a cure.

That pledge came four months after the Sunday Express launched our Fund the fight to cure MND crusade and joined forces with a coalition of leading patients, scientists and charities.

However the United To End MND coalition was dismayed when told earlier this year by civil servants that scientists would have to make between 100 and 300 applications for the £50million, which would have delayed research by decades, as each application takes weeks or months to process.

The team had been hoping that the funding could have been accessed through a single application, which was not acceptable to the Government.

Leading neurologists Prof- essor Ammar Al-Chalabi, from King’s College London, and Professor Chris McDermott, from Sheffield University, have been in talks since then to find a way to allow scientists to focus on research instead of on filling out hundreds of forms.

A compromise has now been reached for which they thanked Dr Jo Latimer, head of neuroscience and mental health at the Medical Research Council and Dr Claire Kidgell, assistant director of the National Institute for Health and Care Research.

READ MORE: MND: Warning signs and possible cause

Care Minister Gillian Keegan, and MPs Andrew Lewer and Stephen Baker have also been instrumental in finding a way to reduce the red tape.

Professor Al-Chalabi, director of the MND Care and Research Centre at King’s College London, said: “It is not our preferred method but it is a compromise we can work with.

“So it won’t be a single application for the whole pot but it will probably be about three or four applications a year which we can help co-ordinate across the MND scientific community nationally.

“For 300 applications we would have had to make two or three applications every week to get the £50million within the five years, which was ridiculous.

“This is the best way forward and we are optimistic.”

The leading neurologist said that work can now start on three applications for about £6million of the £50million to use in the first year.

These will be for the best way to store huge amounts of data that is accessible to five universities and 22 research centres, a model for testing new drugs nationally and an infrastructure for clinical trials to take place at regional centres instead of just a few specialist research centres.

Prof Al-Chalabi said: “I would expect it to be about a year before we receive the first of the £50million funding.

“That is why it was frustrating to have this six-month delay in agreeing how we get the funding.

“At some point you have to stop talking about how you are going to get the money and just get on with it.”

He added: “This will help us move towards finding a cure for MND within years, rather than decades.”

And international colleagues, including those based in the Netherlands and Spain, have expressed an interest in the campaign run by the coalition and this newspaper as a model they can adopt to get funding for research.

Lee Millard, who is living with MND and came up with the idea of the campaign with another patient, David Setters, said: “There has been flexibility shown by the Government.

“The processes that would have been prohibitively restrictive for the £50million MND mission are now being streamlined with the new partnership and with the help of Government departments.

“Our researchers are increasingly confident that this new model will enable the funds to be released efficiently.”

Former rugby union star Doddie Weir, who is also living with MND, said: “I’m happy we’re finally making progress with accessing the promised money but it’s frustrating that it has taken this long.

“I think the Prime Minister and Health Secretary are genuinely keen to fulfil their promises but red tape seems to slow everything down.

“People with MND don’t have time on their side, so we must keep pushing and working together if MND is ever going to be beaten.

“That element of hope is essential.”

Kirsten and her mum at a family wedding

Kirsten and her mum at a family wedding in 2016 (Image: Kirsten Jones)

‘Mum died within just six months of being diagnosed’

When mum was diagnosed with Motor Neurone Disease in January 2020 we thought we had time to accept and adapt, to make peace and move on, says Kirsten Jones.

Truth is, Mum didn’t have that time on her side. Six months after diagnosis she peacefully slipped away.

I remember asking, on my birthday in July 2019: “Mum, why are you slapping your feet down when you walk?” She shrugged and said: “I’m just tired – old age!”

She was only 58 and not an old woman by any stretch – she walked miles every day and had a social calendar to rival a Hollywood socialite. Then, just weeks later, she couldn’t pull on her shoes or unscrew a jar.

“It’s all right, don’t worry about me,” she smiled.

But she knew what was wrong. A talented nurse, Mum saw the signs of Motor Neurone Disease , but she didn’t want to believe it.

MND is a progressive and life-shortening disease affecting one in 300 people. It stops messages from the brain reaching muscles, causing them to weaken, stiffen and waste away. As it progresses, it affects people’s ability to walk, talk, eat, drink and, ultimately, breathe. Many think of Stephen Hawking, who lived for 55 years, but that’s very rare.

Some live for 10 years or more with slow deterioration. Others (like Mum) become trapped in their bodies and lose their battle in a matter of months.

It was Mum’s first question, when the consultant gave his diagnosis. “How long?” she sobbed. He just didn’t know.

I was numb for days, watching my strong mum crumble as she broke the news to friends and family.

But this was just the beginning. Mum and I were best friends and shared everything with each other.

She’d whisk me away on seaside holidays while Dad worked hard at home.

My parents separated so we were especially close, spending weekends together shopping, playing Scrabble and putting the world to rights on country walks.

After her diagnosis Mum made me go back to London, to my normal life, but I couldn’t stop worrying. We’d have daily phone calls, crying as we said goodbye.

I’d cuddle my boyfriend, feeling helpless as I tried to hold down my stressful job and fretting over looming redundancies, while desperately wanting to be with Mum. Then lockdown happened.

In March 2020, as the country hid away from Covid, I hired the last car available in London and drove 160 miles north to look after Mum. “I don’t know what I would’ve done without you,” she cried, her hands wrapped around my neck as I lifted her to her feet. In two months since diagnosis her voice had become more slurred. She couldn’t walk and could barely use her hands.

Kirsten Jones and her mum back in 1994

Kirsten and her mum back in 1994 (Image: Kirsten Jones)

Before her symptoms began, Mum was a special school nurse – loved and respected by all who knew her.

But just months after retiring in 2019 she was safe in the knowledge she would, one day, become just as dependent and helpless as those children.

Some people accept their illness and the knowledge they’ll die. But Mum’s disease was the cruellest, progressing at a speed none of us ever expected.

As the weeks passed, my childhood home became a hub for round-theclock carers and travelling doctors.

Stuck in bed, robbed of her voice and body, Mum would scream like I’ve never heard anyone scream before.

That noise will haunt me forever.

Her character changed from an amazing, independent woman who helped everyone in her life, to a sobbing shell of the person she was.

I miss my Mum. We were together 24/7, tackling everyday tasks I take for granted like using the loo, stretching her legs and sipping a hot coffee. I would lie awake at night as Marie Curie nurses came and went, giving Mum another shot of morphine.

One night, I appeared by her bedside as she gestured to nurses: “Just kill me.”

It was a living nightmare, but we weren’t alone. My godmother Jeanette and my aunt Kate put their lives on hold for Mum, and her many friends and colleagues rallied around and showed us just how much they loved her.

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Mum was pumped full of drugs – synthetic morphine and enough sedatives to knock out an elephant. But for months, despite her failing body, Mum fought.

She had hidden her illness from me, her family and friends, even the professionals, until she couldn’t hide it anymore. I look back and realise how scared she was of every piece of equipment or dose of medication which might make her life a little bit easier. For her, it was another chink of independence taken away. I’m not sure what’s worse, slowly marching to the end or losing your abilities at great speed. Could you accept the reality that you’re dying too soon?

The thought haunts me every day.

After all, there’s no knowing if Mum’s MND is genetic and there’s nothing I can do if it is – no treatment, no cure.

In July 2020, the nurses sent me home to rest. I was anxious and exhausted. I couldn’t bear the thought of Mum dying without me, but the nurses assured me they’d call. Days later, the phone rang.

“Kirsten, it’s time,” a nurse said softly.

I jumped in the car and got home to find Mum limp in her bed. Her eyes fluttered open as I held her hand. I gave her a smile and said: “I’m going nowhere.”

Mum held on, sleeping soundly, for two more weeks. Then, on July 23, 2020, at 5.20pm, she took her last breath.

I held her hand up to my cheek as the colour drained from her skin and whispered: “You’re so loved.” We’d come to the end of Mum’s fight against MND.

It’s been almost two years since Mum died and I can’t believe that she’s gone.

But I’m lucky to have great friends and Mum’s family, to pick me up and remember the good times.

On her 60th birthday, I climbed Mam Tor in the Peak District and imagined her walking right beside me.

Everyday there are things I want to tell her, then I remember she’s not here. That feeling of loss doesn’t get easier.

Mum donated her brain to science in the hope that it’d help find a cure. I hope that one day her dream will be a reality, so that no one has to suffer like she did.


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