Motor neurone disease: People 'trapped in inaccessible homes'

A charity wants to see more money given to help those with condition to help them more quickly.

3/3/2021 1:12:00 PM

People with motor neurone disease 'trapped in inaccessible homes' because they cannot get the right support, a charity warns

A charity wants to see more money given to help those with condition to help them more quickly.

image captionTerry Williams and his wife Claire have applied to change parts of their home to make it more accessibleSome people with motor neurone disease are becoming "trapped in inaccessible homes" because they cannot get the right support, a charity has warned.

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The condition affects how people talk, walk, drink and breathe because cells in the brain and nerves stop working.The Motor Neurone Disease Association has called for commitments to increase funding to help those get support and be able to adapt homes quickly.

The Welsh Government said £4m extra funding had been given to councils.Terry Williams, from Penygroes, Gwynedd, has motor neurone disease (MND) which is fast progressing.Campaigners hail 'very exciting' MND breakthroughHis wife, Claire Yardley Williams has applied to change parts of their home to make it more accessible but she said the process had been hard and frustrating, with the pandemic making it tougher.

"The stairlift has been put in but because of the way Terry walks, he can't use it", she told BBC Radio Cymru's Dros Frecwast."He sleeps downstairs because the bed upstairs isn't suitable."We had made an application to do the bathroom up but because we have had to wait so long the adaptations would not be suitable now."

The pandemic has affected many services and though Ms Yardley Williams said she understood the pressures, she added her husband should be given the correct equipment "now".The charity has called on the Welsh Government and political parties to implement the current Neurological Conditions Delivery Plan for Wales, improve healthcare for people with MND, deliver accessible homes and support unpaid family carers.

'Stuck in homes'"Things happen too slowly," said Sian Guest, policy and public affairs manager at the MND Association."MND develops very quickly and once people have been assessed it takes too long for those home adaptations to happen.

"In the meantime people with MND are stuck in their homes and sadly some people have died waiting for those changes."A Welsh Government spokesman said: "Local authorities have statutory duties to provide eligible disabled people with a disabled facilities grant.

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"We also provide an additional £4m capital to enable local authorities to provide essential adaptations without a means test and without delay."Welsh Labour said it wanted "everyone to receive the help and care they need" and welcomed suggestions on "how that can be a reality".

Plaid Cymru and the Welsh Conservatives have not responded to requests about their policies on the issue. Read more: BBC News (UK) »

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poor people they should never have to wait ,Government should stop spending on illegals staying in our hotels and the money used to help these and other people My step mother had MND. I have to say the council /government were really good with her. They spent over £15,000 adjusting the house for her, it's not a council house, so we were all surprised they spent the money on it. She had hoists, custom wheelchair and a lift installed.

DFG funding has increased to over 500mill last year to improve accessibility of peoples homes. Problem is, it's not ring-fenced so councils are using the extra money to plug holes in other places that their austerity measures have depleted. It's there to be used. It's about time councils recognise that people with MND haven't got the time to wait !!