Man in motorhome with MND hopes to find suitable housing with winter looming

Richard Youle, local democracy reporter

A man with an incurable wasting disease who lives in a motorhome is hoping suitable housing can be found as his condition deteriorates and winter looms.

Harold Hope, who has motor neurone disease (MND), feels most at home in Swansea Marina where his friends and wider support network are and is on Swansea Council’s housing list.

The 67-year-old contacted the housing department in 2023 after being diagnosed with MND and was offered a flat in Waun Wen but turned it down.

Mr Hope said he’s been told he’s fifth in line for a flat in the marina but has no idea how long it’ll be before one becomes available. He doesn’t want to live anywhere else.

‘Housing crisis’

“It’s my fault in many respects because I don’t want to move away from my social network,” he said. “There is a housing crisis in Swansea – everyone knows that.”

He claimed, though, that housing staff weren’t able to say whether his condition afforded him priority status when he asked the question recently. A spokesman for the council said it was doing all it could to find him a suitable place to live.

Mr Hope said basic daily tasks were becoming increasingly hard, that on some days he could hardly manoeuvre himself out of his motorhome and onto his mobility scooter, and that his legs have given way on two occasions due to muscle wastage.

He said he’s lost dexterity in his hands and has to ask for help emptying his motorhome toilet cassette which he doesn’t like doing.

There are four main types of MND, which affects the motor neurone nerves found in the brain and spinal cord. These nerves effectively tell your muscles what to do. The disease is usually life-shortening and symptoms differ from person to person and how quickly they progress. Symptoms can be managed with treatment but there is no cure.

‘Kick in’

Mr Hope said: “I am one of the fortunate ones who can still speak and I don’t have any breathing or swallowing issues at the moment. I consider myself fortunate in that respect.

“But it is really starting to kick in now. I know I’m going to need carers. I’m increasingly concerned. I don’t know if I’ve got six months, 12 months, or two years. Some people live for longer.

“All my support network are saying: ‘You can’t do another winter in the motorhome.’ My heart tells me that I can but my body tells me I can’t. I’ve done minus seven degrees before but I was fitter and had a dog.”

The vehicle has heating and cooking facilities but no running water. Mr Hope said he was able to use a premises’ showers nearby. He added that he will hand in his driving licence this year.

He has two grown-up sons living in Baglan and London who both help out, a brother in Cumbria, and “a very supportive” ex-partner who lives in the marina area.

Mr Hope was a lecturer in ceramics and spent “two years getting bored” after taking early retirement and went on to get a job as assistant bosun and then bosun at Swansea Yacht and Sub Aqua Club.

He’s a keen fisherman and has been living in a motorhome for more than a decade having rented a “noisy” flat in the city’s Wind Street. For years the motorhome way of life gave the rod and line angler freedom to fish the Wye and other rivers.

Muscle spasms

Referring to his diagnosis in 2023 Mr Hope said he’d been experiencing muscle spasms and hand tremors and “was in some ways prepared” when a neurologist told him he was pretty certain it was MND following an MRI scan and nerve function tests. “I turned to him and said: ‘I suspected the same thing’,” he said.

Mr Hope said he’s had excellent ongoing care and support from a specialist clinic in Morriston and that he felt very sorry for those around him. “They are watching somebody physically deteriorating in front of their eyes,” he said. “It’s a cruel one because mentally nothing changes but physically it’s not you.”

He said he was very saddened when former England rugby star Lewis Moody, 47, announced he had MND earlier this month and his heart went out to his two teenage sons in particular.

He said he has been prescribed Valium – a drug mainly used to relieve anxiety – but uses it very sparingly. “I don’t want to be a gibbering idiot,” he said.

Mr Hope admitted there were dark moments, particularly at night. “I deal with them as best as I can,” he said. “You’re constantly trying to distract yourself.”

The council said it was doing all it could to help Mr Hope with his request for housing.

‘Full medical points’

A spokesman said: “We awarded Mr Hope full medical points to reflect his condition and offered him suitable ground-floor accommodation near the city centre in 2023 shortly after his application was made to us. Unfortunately this offer was refused because it was not located within the marina.

“Accommodation in the marina is very limited, particularly in terms of providing adapted housing that meets the needs of individuals with limited abilities. At present there are no vacant properties which would provide him with his additional needs.”

He said Mr Hope has also been registered with a scheme called Adapt, which is a partnership between the council and other social housing landlords. “This will enable us to look at all properties in his chosen area,” he said.

The council’s housing list fluctuates from day to day and month to month. In March this year it stood at 7,535. Most were new applicants for housing while the remainder were existing councils tenants seeking to transfer to another property.

Mr Hope said even moving to an area like Sandfields, a flat neighbourhood not far from the city centre, would uproot him and require frequent taxi journeys. “If I died in the van it would be better than moving away,” he said.