Man with motor neurone disease moves into flat after winter in motorhome

Richard Youle, Local Democracy Reporter 

A 67-year-old with motor neurone disease (MND) said he felt “very safe” after surviving an “awful” winter in his motorhome and moving into a council flat in Swansea.

Harold Hope had chosen to live in a motorhome for years as he loved fishing and travelling, and being cooped up in a flat previously hadn’t suited him.

He continued his unconventional domestic arrangements after his MND diagnosis in 2023 but it became more and more evident that he needed help.

The disease affects the motor neurone nerves found in the brain and spinal cord and is usually life-shortening. Symptoms and how quickly they progress differ from person to person – they can be managed with treatment but there is no cure.

Swansea Council offered Mr Hope a flat in Waun Wen but, keen to remain based in Swansea Marina where his friends and wider support network were, he turned it down.

He was put on the waiting list for a flat in the marina and, after a final winter in the motorhome, he is now making himself at home in a groundfloor unit in Gloucester House, off Cambrian Place.

‘Security’

“I’m waking up in my own warm space, and I feel very safe,” he said. “It’s such a sense of security.”

Asked what winter was like, he replied: “Awful. My mobility was deteriorating so rapidly. I totally lost my independence. I was becoming a broken man. I wasn’t eating properly. Now I’m eating three meals a day.”

Mr Hope said he felt media coverage of his situation last autumn had helped him get support. “I had a visit from housing options, and was given a direct line to a lady there who kept in touch once a week,” he said. “I also got a social worker, and a package of care was put together.”

Former ceramics lecturer Mr Hope moved into the flat just over a month ago. He already had an electric wheelchair and now has a riser-recliner chair and a flexible hospital bed as well. Carers come in twice a day to help with washing and other tasks.

Mr Hope said his social worker and carers were brilliant and that friends have also provided superb support.

Things most of us do without thinking are a challenge. He can’t lift a kettle but now has a “one-cup kettle” which he boils.

“I have to slide it across the kitchen worktop and use both hands to pour in milk from the fridge,” he said. “I then hold it with both hands and rest it on my lap and try to get to the table without it spilling on my lap.”

‘Lucky’

Mr Hope said he felt lucky compared to some. His heart went out to the family of 14-year-old Kyle Sieniawski, 14, of Pontypridd, who died last November less than a year after being diagnosed with MND. Kyle’s family spent months living with him in Noah’s Ark Children’s Hospital, Cardiff, because their home wasn’t adaptable to meet his needs.

“What the family must have gone through,” said Mr Hope. “I’m very fortunate.”

While grateful for the help that has come his way he is under no illusions. “There are no plateaus with MND,” he said. “The inevitable is the inevitable. I’m not stupid.”

Mr Hope has check-ups from his respiratory therapist and has regular blood tests. He said he doesn’t drink much alcohol if he’s out as getting to the toilet can be problematic. He said he was cheered to hear that the manager of The nearby Queens pub had recently asked after him.

“That’s the thing – people are checking up on me,” he said. “I feel I’m part of the community. It’s essential for proper human existence.”

Twinkle 

A twinkle regularly appears in Mr Hope’s eye. He’s just put in his first ever online order of supermarket groceries. “It’s worrying – I never thought I would be a 21st Century man,” he said with a grin.

He also tried to recall the last time he was showered or bathed before his MND took hold. “My mother probably washed me in a tin bath in front of the fire – and I would have been fourth in it after my mother, father and brother,” he said.

Five years ago Swansea Council signed up to an MND charter established by the Motor Neurone Disease Association charity. It calls for early diagnosis and information, high quality care, and for sufferers to be treated with dignity and respect and given the chance to maximise their life.

Speaking last autumn a council spokesman said the authority was doing all it could to help Mr Hope with his housing request, including awarding him full medical points to reflect his condition.

Mr Hope is giving his motorhome to his two sons, who live in Baglan and London, to share. One of them has two daughters and he hopes they will have some adventures. “It’s all I’ve got to leave them, I thought I might as well give them that,” he said.