Motor Neurone Disease: ‘No words to describe how bad it is’

Lack of awareness. That was the problem when the ambulance was unable to take Pauline Scott to hospital.

Coling Hardy representing MNDA in Berwick. (Motor Neurone disease awareness)

Pauline needed medical help after a fall. She had Motor Neurone Disease. Her brother, Colin Hardy, recalls that when the ambulance arrived at her Scremerston home it was not sufficiently equipped to cope with a patient imprisoned in her own body.

Instead, Pauline’s family had to transport her in their own specially-adapted car, with paramedics sitting in the back. The ambulance followed behind as Pauline was taken to Wansbeck hospital in Ashington.

“We had taken an ambulance out of service and they then insisted that we went to Wansbeck,” Colin explained. “When we got to Wansbeck they couldn’t deal with my sister because they didn’t know what the condition was.

“Because she had Motor Neurone Disease she should have been taken to the RVI in Newcastle. That is where the Motor Neurone team is. It is a specialist team. There are only three nurses and one doctor. They look after the whole of the north east. So it is limited.

“But the problem was the health professionals themselves did not know enough about it. There is a total lack of awareness about this horrendous disease.”

Pauline was diagnosed with Motor Neurone Disease on January 8. She died three months later on Easter Monday.

Colin knows more than most about the devastating impact of a condition he describes as a “death sentence”.

“The reason I’m so passionate is that some people still think it is something you can work through it,” he explains. “But there’s no cure. There are no tablets. There is no chemotherapy. It is a death sentence.

“It takes away the power to control your muscles. In varying stages, you lose the ability to walk, use your arms, to feed yourself, to swallow and to speak. In the end you lose the ability to breathe.

“If you imagine someone who cannot move a muscle; cannot swallow; cannot clear their throat. Someone who has difficulty breathing to the extent that you wonder every minute if it is going to be their last breathe. It is a horrendous disease and it is more common than people think.

“My sister said on three occasions that she wanted to die.

“She was disabled with polio from the age of 14 months, but it affects different people on different ways. It is fast and fatal.”

Although Professor Stephen Hawking has lived with the disease for a number of years, many others only last a number of months.

Colin has a neighbour in Berwick who suffers from MND. He also lost a good friend, a former Berwick fireman, to the fatal disease.

Following his sister’s death, he is now on a one-man mission to raise awareness not just in his home town of Berwick, but across Northumberland and beyond.

Colin is Northumberland’s only representative of the Motor Neurone Disease Association, the national charity covering England, Wales and Northern Ireland which focuses on care, research and campaigning.

Using the charity’s awareness month campaign as a platform, he has been working hard in June to spread the message and hopes to establish a group that can offer help and support to sufferers and their carers. He knows only too well how much support is needed.

He has witnessed the suffering and deterioration at close hand. He knows the horrors. He knows how it shatters lives.

“There are not words to describe how bad it is. I’ve witnessed death and I’ve lost people in tragic circumstances, but Motor Neurone Disease means going down with no hope,” he said.

Colin has had meetings with local politicians, including Sir Alan Beith and Anne-Marie Trevelyan. He also addressed Berwick Town Council on Monday and was pleased that councillors agreed unanimously to sign the MND charter.

But more needs to be done, particularly to improve the package of support on offer in Northumberland.

“You normally end up with a partner who has to give up work to look after a loved one in their home 24/7. The carer gets £96 a week after giving up their job. It is 24/7.

“The bottom line is that people are very much left on their own to get on wit it. Yes, they’ll send somebody in, if you’re lucky, for a little bit of respite.

“But the only respite available in Berwick is at the hospice. The girls in there are absolutely wonderful. But it is a charity and it only open one day a week.

“If we took the burden of cost and put it on the health service 24/7 it becomes an invariable cost.

“My sister worked. She put money into a pension fund. But she’s not going to get that government pension. She’s not here to get that back. That should have been given in the form of some sort of care or some sort of respite. Even a communication device, an iPad with an adaptor, would help with quality of life.

“My own experience of the disease is not a good one because of our postcode, because of where we are.

“It is not the people. It is easy to point at professionals and criticise. They are fighting with very limited funds and limited resources because we are so far behind.

“So I’m banging the drum and trying to raise awareness.”

Colin has found that the lack of awareness and understanding of the disease extends way beyond the general public. In his experience, too many health professionals don’t know enough about it either.

“When my sister was diagnosed, we found that even health professionals didn’t know what it was about. There’s a total lack of awareness.

“Even the health professionals didn’t talk to my sister, they talked to me. She was the third party for her own illness.

“Once you are there, locked in to a dead body with an electrically sharp mind you go from happiness to sadness in an instant. You go from trying to get through it to total frustration.

“If you can imagine your partner explaining to friends, right in front of you, what is wrong and why you can’t communicate… every time you hear it you die a little bit inside.

“You are having to educate the professionals. We didn’t even get a care package in place for my sister.

“By the time people are diagnosed you go through the process of trying to get a care package and facilities. It is not unusual for that process to take 18 months.”

His sister would have benefited from a spreader bar for a hoist which would have made it easier to transport her. But after months of discussions and red tape about the £25 piece of equipment, it was too late.

“We counted out the trips back and forward to Newcastle, the funding meetings and professionals from Berwick being involved. You’re talking near enough £800 spent on trying to justify spending £25. It is a farce. We had to go through the rigmarole of red tape. But after three months it was too late.”

Colin has spent time at the garden centre and the library talking to people about Motor Neurone Disease. But one of the problems he has come across is that sufferers are often housebound. It many ways, it makes MND invisible.

But it is here in Northumberland. Colin knows of cases in Cornhill and Wooler, as well as Berwick.

“The lady going through Motor Neurone in Berwick at the moment, my neighbour, is probably in her 40s. There are people younger than that.

“What people need is fast and definite support. Even down to bereavement benefits and tax forms, all these sort of things that you have to do. The group could be there to help.

“People cross the street rather than say ‘there’s someone with a fatal diseases who can’t really speak’. I know what it is like for people who find it difficult and cross the road instead. My son was tragically killed in Berwick and people didn’t know how to approach me.

“I want people out there to be aware that there is an association that will help them.

“I want to help them. It is important to spread the message.”