People with motor neurone disease (MND) don’t have time.

They are living with a terminal illness which kills a third of people within a year of diagnosis and half within two years.

During that time, their body will increasingly fail them as the disease robs them of their ability to walk, move, eat and eventually breathe.

It effects people from all backgrounds. It has no cure.

MND sufferers need support, they need the chance to retain their dignity and they need to feel safe and secure in their own home.

Sadly, many don’t. I have heard too many stories of people with MND trapped in their own homes, unable to get upstairs and unable to use the bathroom – all because they can’t access the financial help they need to make basic adaptations to their homes. Ive even heard of people dying while waiting for the adaptations to be installed.

That’s why we’ve been campaigning for change under the banner 'Welsh Homes for MND'. We are calling for an end to the excessively long waiting times people with MND face when applying for housing adaptations.

And it’s why we were so pleased when Senedd members from across the political spectrum voted for a motion to introduce a fast-track, non-means tested process for people with MND when applying for vital housing adaptations.

As the Member of the Senedd for Monmouth, Peter Fox, who led the debate, said: “We need action now because MND will not wait.”

The National Wales: Peter Fox MS has been calling for more action on MNDPeter Fox MS has been calling for more action on MND

What we are calling for needs to materialise quickly.

The additional million pounds pledged to local authorities by the Minister for Health and Social Services, Eluned Morgan MS, will, she suggested, mean that the ‘vast majority if not all local authorities’ will have scrapped means testing by April 2022.

The MND Association will continue to campaign to ensure that a fast-track process is introduced in councils for people with MND.

It is my hope that everybody with MND in Wales will be able to live in safe and accessible homes.

Small changes - things like ramps, stair lifts and wet rooms – really do make all the difference to day-to-day life for those with this brutal disease.

Sian Guest is the Policy and Public Affairs Manager for Motor Neurone Disease Association Cymru.

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