Brave resident will be champion for those living with MND

Council to review policy so more people with disabilities can be part of meetings

A Plymouth resident has been given the title of Plymouth City Council Champion for people living with motor neurone disease (MND).

Father of two Steven Wharton from St Budeaux, who lost his ability to walk and talk 18 months after being diagnosed three years ago, is pioneering how the city council provides access to democratic services for people who are housebound.

Councillors, reduced to tears by Steven’s story, watched a video about his life with MND at their full council meeting this week, before he joined them remotely from the bed to which he is confined.

MND is a rapidly progressive disease that affects the brain and nerves and causes weakness of the muscles, making walking, breathing, speaking and swallowing more difficult. Steven communicates by moving a mouse around with his eyes and selecting letters to build words and phrases which are then turned into speech. He tastes using a special liquid which creates a foam that dissolves on his tongue without the need for swallowing.

He says he aims to be “the new poster boy for MND” and can talk to his friends, shop, control the television, and “tell people off when they annoy him.”

“I just want to say if you have MND like me it might seem like there is no hope, but we don’t know what the future holds,” he said. “Be strong, be brave and never give up.”

Cllr Jon Dingle (Lab, St Budeaux) proposed a motion to lobby government for a better deal for MND sufferers for better funding for research, energy support during the cost of living crisis, as well as asking the council to review its policy for how housebound people can access democratic services.

These were supported by councillors who said Steven is “inspirational.”

Cllr Dingle said few diseases are as devastating as MND, made more difficult by the cost of living crisis. According to the Motor Neurone Disease Association, equipment that people living MND use are all run by electricity and the recent increases in tariffs causes many sufferers to rely on grants.

It is believed that families managing advanced MND could spend £800 to £900 a month on electricity for such equipment.

Cllr Sue Dann (Lab, Sutton and Mount Gould) said the council would continue to support the Plymouth group of the Motor Neurone Disease Association in its fundraising and also provide help for MND sufferers. She mentioned a charity bike ride by local man Andy Cooper which raised thousands of pounds for Plymouth MND to help provide equipment like stairlifts and home adaptations.

Cllr Natalie Harrison (Con, Plympton St Mary) said people suffering debilitating illness should be fast-tracked to services. This had happens with disabled parking permits for people with cancer and should apply to people with MND.

Cllr Sally Haydon (Lab, St Budeaux) said: “Steve has been able to join our meeting through live link which is the first time the council has allowed this to happen. It is extremely important that Steven was allowed to be part of this meetings as unlike those who are allowed to attend in person it would have been impossible for him to be here.

“It’s not been easy to arrange this, but we have done it and maybe we can adopt this going forward so people with disabilities can be part of our democratic process and not just be watching online.”

She said from now on Steven is the right person to be Plymouth City Council Champion as “he inspired me and he will inspire others.”