A FAST-TRACK process for home adaptations for people living with Motor Neurone Disease (MND) is needed now, before it’s too late – warned a Member of the Senedd.
Peter Fox, who is the MS for the Monmouth constituency, made the call, following a meeting with the Motor Neurone Disease Association (MNDA) and a Motor Neurone Disease (MND) sufferer.
He and the charity jointly agree that the current process for adaptations to be carried out is too drawn-out.
Mr Fox, who has also now become the Motor Neurone Disease Champion for the MNDA charity, said:
“Following diagnosis, MND kills a third of people within one year, and more than half within two years. Currently, there is a 1 in 300 chance of being diagnosed with MND.
“More action is needed quickly because MND will not wait and therefore I decided to become a Motor Neurone Disease Champion.
“Currently, people living with MND across Wales are becoming trapped in inaccessible homes because they cannot afford or cannot access support for necessary adaptations. Some patients have died while waiting for alterations to be made, and we fear the pandemic has worsened the situation in many cases.
“We want to see the delivery of safe and accessible homes for people with MND across Wales.
“To do this I am calling on the Welsh Government to help local authorities put into place a transparent, fast-track, non-means tested process for adaptations for people with MND at their houses because, at the moment, the process is too drawn-out.”
He added:
“Everyone with MND should be supported to maximise the quality of life they have left.”
And Sian Guest, Wales Policy & Public Affairs Manager for the MNDA charity, said:
“People are not able to apply for adaptations until they need them, when people living with Motor Neurone Disease (MND) get to this stage they need adaptations quickly as MND is a rapid progressive disease, the system doesn’t allow for this, things move slowly and very often by the time the adaptations are installed the disease has further progressed to another level in which the approved adaptation needs have been superseded by a more complex need.
“We need a fast-track system in place for people living with MND urgently.”
Editors’ notes:
MND affects the nerves called motor neurones in the brain and spinal cord. These nerves tell your muscles what to do. When motor neurones are damaged, it can affect the way your body works. This worsens over time and cruelly robs people of their speech and mobility.
