Call for next government to improve support for MND carers

On Global MND Awareness Day, the MND Association says Rob Burrow's passing has increased awareness of the disease

The MND Association says Rob Burrow's passing has increased awareness of the disease
Author: Harry BoothPublished 21st Jun 2024

A Liverpool man who lost his partner to motor neurone disease wants the next government to give MND carers more money, so they can afford to care for their loved ones at the end of their lives.

Today is MND Global Awareness Day - which aims to teach more people about the disease, understand it, and see the devastation it wreaks on people’s lives.

It also aims to highlight the people living with MND and their carers, and remember those who have died from the disease.

Alun Owen's partner passed away in 2001, which was the driving force in him doing all that he can to support people and their families who are living with MND.

Alun, the chair of the Merseyside branch of the Motor Neurone Disease Association, said:

"Each day, six people are diagnosed with motor neurone disease somewhere in the country and that's alarming because, at the moment, there's still no cure.

"But there's a long road ahead, a difficult journey, and everybody's journey is different, so you don't know exactly how it's going to pan out, but you know that ultimately it is a fatal condition.

"It's a hugely debilitating disease"

"It's a diagnosis that tells you your life is going to be cut short and for many people, it's about suddenly you become dependent on other folk for support to be able to do the simplest things like moving from a chair to another chair, if you need a drink, you need someone to help you drink. If you eat, you need somebody to help you eat and in many cases you're eating and drinking functions are affected, so you've got to find different ways to get the nutrition inside your body so you can live as long as you possibly can, so it's a hugely debilitating disease.

"Somebody living with MND - most of the time, they need to be in a hospital or in any kind of other care setting. They're quite comfortable at home as long as the carers have got the energy and the strength and the time to actually look after that person. Obviously we know the care sector is fraught with difficulties at the moment for many reasons.

"How how do you manage that? One way is to find a way to actually give enough money to people so they can afford to care for that person at the end of their life without worrying about how they're going to pay their electricity bill and ironically, many of the support things put in place to support people such as a riser recliner chair, or a means of getting upstairs, such as using a stair lift, they all rely on electricity. So you're giving people things that are going to increase their bills, but yet we're not looking after them financially.

"So many people will try to keep going to work and then that's when things can go horribly wrong.

"The most recent survey, is that we know that nearly half of carers report that they worry about money and the rest of them said it has caused financial difficulty.

"Support the call for improved care... and greater provision for caregivers"

"There is a carers allowance which people are entitled to, but it really just doesn't cover the bills. So one of the things the MND association are doing nationally - they're asking the government, whichever one wins the election, to support the call for improved care and specifically greater provision for caregivers who are just unpaid in their current role and it will just give them the opportunity to provide that care.

"After all, it's the end of someone's life, however long it may be, until they do die, but actually just giving them the opportunity to do the right things, live a life and be able to pay their bills without worrying would make such a difference."

The Motor Neurone Disease Association says the passing of rugby star Rob Burrow has dramatically increased awareness and internet searches about the condition.

The charity says 45,000 people visited their website on the day of his death nearly three weeks ago - searching for information about signs and symptoms.

Alun added:

"The fact that he and his family made the decision to really do the best they could to raise awareness of the disease, we really thank them for that and anybody else who who puts themselves out there, whether they're famous or not famous because it just helps to let people know about the disease and about how you can support them and hopefully get more money, so we can eventually find a cure through investing that money in research."

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