MND patient seeks more support from next government

A man from north Staffordshire who has Motor Neurone Disease (MND) is urging parliamentary candidates to sign a pledge to support people who live with the condition.

The MND Guarantee, created by the Motor Neurone Disease Association, asks candidates to commit to raising awareness of the disease, and supporting the MND community in Parliament.

James Gilliver, from Mow Cop, was a fit and active 62-year-old before being diagnosed earlier this year, and believes more support is needed.

"It's hard enough fighting the disease without having to fight the system as well," he told BBC Radio Stoke.

MND is a life-shortening condition affecting the brain and nerves.

The guarantee asks candidates to commit to accessible homes, access to treatment, improved cost-of-living support, sustainable social care, and support for MND carers.

"It encourages the next government to ensure that MND sufferers get looked after, get listened to, and get helped as much as possible, no matter where they live in the country," said Mr Gilliver.

His wife and full-time carer Lisa Gilliver said it would make a real difference to the MND community.

"We do have really good staff that we have access to," said Ms Gilliver.

"But there's a point when it comes to really supporting us financially to make adaptations, which we have to do rapidly, we've hit a brick wall with support."

The couple said a platform lift to accommodate Mr Gilliver's needs would cost more than £20,000.

They added that while they could afford that, many families in their situation cannot.

"That type of project for MND sufferers, without a lottery win, is very hard to stomach," said Mr Gilliver.

"The amount of adaptations that we need will rapidly use up our savings.

"I'm then at a point where the only option I have is to sell my business to fund whatever else it is I need."

He said many people with MND were "not as fortunate".

Tim Atkinson, National Campaigns Manager for the MND Association, said too many people living with MND live in "unsuitable and unsafe housing".

He added that support for unpaid carers was "not good enough".

"With the support of all political parties and their prospective parliamentary candidates, we can make a difference," he said.

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